A single word date reference reminds me somewhat of the time that I watched the classic Stanley Kubrick / Jack Nicholson film "The Shining. The introduction of the "Steady cam" feature, which allows the film maker to follow the actors on foot giving a sense of being there with them is somewhat akin to blogging. However, more relevantly there was a moment in the film where the soundtrack built within a perfectly dark screen and up popped the word
"Tuesday"
I don't think that I think that I have seen an adult jump as far off the settee before. Kitten seemed to find the word quite scary!
September is the month where my various treatments phase out before the long wait to reassessment.
This process has already started with the final cycle of chemotherapy starting last TUESDAY (let's see if that affects Kitten when she reads it) and today marks the first of the last three self-administered subcutaneous blood boosting injections. I have been doing these with each cycle of chemotherapy and there are using five days (days 8-12) but this time there are three as there is no more chemotherapy to follow.
The last day of radiotherapy is the 8th of September. These last few days of radiotherapy do not hold any foreboding for the treatment, that is just acase of staying still for a few minutes a day. Rather, I am more concerned as to whether the passage of food will deterioriate any more over this period and the period shortly after.
Hopefully (there's that word again) I will look back on August as the month that I dug in a did the hard work with this disease and September was the month when things took a lighter tone. That said, I would be more than happy to graft hard all the way through for the right result.
Roxy - where's the baby!
Also, if anyone is wondering what I am doing blogging at this time of the morning then the bowl of rice pudding will explain it. It's a good job that I like rice pudding.
Tuesday 31 August 2010
Monday 30 August 2010
At the Races
We had a day out today for Sushi's birthday at the Epsom races. Happy birthday, Sushi. I hope that your hangover isn't to severe tomorrow, after all, you have all evening to recover from it!
It was a fun family day out that was commerically oriented towards the kids with running races and attractions as well as a full race card for the grown ups. Most had a little flutter, including the kids!
I had to take a back seat today as I have been very tired over the last couple of days. We were due to take the kids to the local theme park yesterday, but I ducked out and Kitten took the kids ice-skating with Sushi and Sonic is instead whilst Notoplip took his "mini-me" swimming.
Rather than being helpful, not only have I been tired but I have also been cantekerous; being intolerant of some of the things that I normally don't agree with in the house but which the kids normally get away with. I guess I have just been very grumpy!
There are only eight more days of radiotherapy to go, so I guess I will be tired but it's just a case of barrelling through it now.
It's the end of August and I can't deny that this month has been tough. It has been how I had imagined things would be rather than the coast I have been on for the previous months. I just hope that the treatment works enought to get me into surgery and I can then start looking forward to plenty more family fun days (in a more immersive role) and, who knows, the occasional blow out with the lads.
It was a fun family day out that was commerically oriented towards the kids with running races and attractions as well as a full race card for the grown ups. Most had a little flutter, including the kids!
I had to take a back seat today as I have been very tired over the last couple of days. We were due to take the kids to the local theme park yesterday, but I ducked out and Kitten took the kids ice-skating with Sushi and Sonic is instead whilst Notoplip took his "mini-me" swimming.
Rather than being helpful, not only have I been tired but I have also been cantekerous; being intolerant of some of the things that I normally don't agree with in the house but which the kids normally get away with. I guess I have just been very grumpy!
There are only eight more days of radiotherapy to go, so I guess I will be tired but it's just a case of barrelling through it now.
It's the end of August and I can't deny that this month has been tough. It has been how I had imagined things would be rather than the coast I have been on for the previous months. I just hope that the treatment works enought to get me into surgery and I can then start looking forward to plenty more family fun days (in a more immersive role) and, who knows, the occasional blow out with the lads.
Sunday 29 August 2010
Back to the Humour
I rang Sam the Eagle at work on Thursday to discuss progress on our project and I couldn't get him to speak. He was laughing constantly and wouldn't stop. Sometimes there can be interference when ringing using the work set up that I have from my laptop, so I told him I would ring from the house phone.
When I got through he explained that the problem was that my voice sounded like one of the voices that I use on the silly videos and he thought that I was mucking about. I checked the laptop and all of the effects were switched off, so I am not sure what went on. Anyway after I got off the phone I knocked up a quick video to recreate the moment.
I know that it isn't the most tasteful but it makes us laugh!
When I got through he explained that the problem was that my voice sounded like one of the voices that I use on the silly videos and he thought that I was mucking about. I checked the laptop and all of the effects were switched off, so I am not sure what went on. Anyway after I got off the phone I knocked up a quick video to recreate the moment.
I know that it isn't the most tasteful but it makes us laugh!
Time to Dust off the Decks
My DJ setup is still in what used to be the "music room". Now it is two thirds toy room and one wall music room.
So, I have been in there fighting for a bit of space and have got everything plugged up again.
Those who know me, but not well, always assume that I was garrulous party DJ who liked the sound of his own voice, but that is as far from the truth as possible. I DJ ed funky house club music, which was about continuous mixing of music and didn't involve any microphone work at all.
It was my passion for the music that got me into the DJing and that stemmed from the dance floors of the Ibiza "super clubs" such as Pacha and Space. These clubs are a far cry from the 18-30s San Antonio image with which most are familiar and the "superclubs" are a mix of the hedonistic and outrageous as well as being a "Mecca" for the world's leading DJs and "musos". You can be in Space and within half an hour talk to people from the whole of Europe as well as North and South America.
When I started DJing I just wanted to try and understand how the music worked, how it was put together seamlessly and how the DJs were able to control the dynamic of it so that it rose and fell on a roller coaster of which you were a willing passenger.
It was a long journey for me and I put in a lot of hard work. What I lacked in natural music talent, I made up for in drive, analytical technique and the simple ability to bang out a big tune. Having spent years on the dance floor I didn't lose the feeling for what worked.
What I enjoyed about DJing was the dynamics of it. Every night was a different crowd and a different feeling but, because I was playing an established genre of music, there was an understanding that I was working within limited parameters that allows for a mixture of preparation and spontaneity.
In some ways the preparation was as much fun as the playing. Constantly buying new records, getting them home, listening to them and seeing how they fit into the existing material was a thing for a noisy jam in the music room, where Kitten struggled to hear the television in the front room. There is a real value to that period of experimentation that lifts the spirits as you sense that you have struck gold.
The thing about mixing music is that you often get more than the sum of the parts. You can blend records together without been ostentatious or you can go all out for effect in creating a synergistic sound using the dynamics of the different pieces. That may not be so noticeable in your music room but you get to know what works in a club when you have 10KW of sound stuck behind you.
When you play in a club you have to be in good nick because the atmosphere is always messy, but at home working with the decks is like therapy and it offers an opportunity to work in a way which is gentle but also rewarding.
So it's time to take advantage of a skill that I already have and I imagine that Boogle will be itching to get in on the act.
So, I have been in there fighting for a bit of space and have got everything plugged up again.
Those who know me, but not well, always assume that I was garrulous party DJ who liked the sound of his own voice, but that is as far from the truth as possible. I DJ ed funky house club music, which was about continuous mixing of music and didn't involve any microphone work at all.
It was my passion for the music that got me into the DJing and that stemmed from the dance floors of the Ibiza "super clubs" such as Pacha and Space. These clubs are a far cry from the 18-30s San Antonio image with which most are familiar and the "superclubs" are a mix of the hedonistic and outrageous as well as being a "Mecca" for the world's leading DJs and "musos". You can be in Space and within half an hour talk to people from the whole of Europe as well as North and South America.
When I started DJing I just wanted to try and understand how the music worked, how it was put together seamlessly and how the DJs were able to control the dynamic of it so that it rose and fell on a roller coaster of which you were a willing passenger.
It was a long journey for me and I put in a lot of hard work. What I lacked in natural music talent, I made up for in drive, analytical technique and the simple ability to bang out a big tune. Having spent years on the dance floor I didn't lose the feeling for what worked.
What I enjoyed about DJing was the dynamics of it. Every night was a different crowd and a different feeling but, because I was playing an established genre of music, there was an understanding that I was working within limited parameters that allows for a mixture of preparation and spontaneity.
In some ways the preparation was as much fun as the playing. Constantly buying new records, getting them home, listening to them and seeing how they fit into the existing material was a thing for a noisy jam in the music room, where Kitten struggled to hear the television in the front room. There is a real value to that period of experimentation that lifts the spirits as you sense that you have struck gold.
The thing about mixing music is that you often get more than the sum of the parts. You can blend records together without been ostentatious or you can go all out for effect in creating a synergistic sound using the dynamics of the different pieces. That may not be so noticeable in your music room but you get to know what works in a club when you have 10KW of sound stuck behind you.
When you play in a club you have to be in good nick because the atmosphere is always messy, but at home working with the decks is like therapy and it offers an opportunity to work in a way which is gentle but also rewarding.
So it's time to take advantage of a skill that I already have and I imagine that Boogle will be itching to get in on the act.
Saturday 28 August 2010
Succour and Hope
Things have definitely eased for me.
The most difficult thing to have coped with recently was not the changes that took place but the rate at which they happened. The decline in eating capability and the onset of pain came not as a slow and osmotic process but as a battering ram. Before I could adjust I had to get my body off the end of the ram first, which was still swinging wildly.
As soon as you can do that then you are able to normalise things.
Add into the mix the fact that there have been a number of things to lift me physically as well as personally and I am back in a good place, albeit a little more tricky than it was before.
When I wrote about the return of the children it invoked the word "succour" (healing given in a time of need). Like all good medicine it is not just about what you take but about when you take it and their re-emergence has been timed perfectly.
Today Kitten took Boogle ice-skating as I was due to take Huffty to see Chelsea vs Stoke in the Premiership. So they both had the pleasure of the Italian clan (minus Mrs) and Boogle got a new pair of ice-boots. Huffty and I enjoyed an afternoon in the sun and a home victory. As lovely as my lad is, I am sure that he has just a tiny smidgen of thug in him. I say this in jest as at times he seemed much more interested in the chanting from the Chelsea (Matthew Harding) end that we were sitting close to. He was off his seat with his arms in a "V" joining in with eyes starting wildly, in a way that I have not seen before, whilst the action was at the other end of the pitch.
Hope I mention because it occurred to me today that perhaps I have never really understood what hope is. At some level I have always been dismissive of hope because I have always perceived that you make your future by your actions in the present. I have aways understood that what you project and hope for also play a part but today I understood this in a slightly different way.
Today, as I sat there with my son I touched hope in a way not where I envisaged wanting to see my kids grow up (a recurring motivation), but in a way where I saw myself with my kids grown up and that the perception had dragged me to the future.
There is a subtle but significant difference in the perception in that in the one today "hope" was a something real, a tangible vehicle to be used rather than simply a projection of what I would like to happen.
I prefer to base my aspirations on my own steam and on science but there is a long gap between the end of raditherapy, chemotherapy and reassessment and I am aware that my approach and frame of mind is of no little significance. I feel as if I am in a new phase of the process and will be looking to get the best out of it that I can whilst ensuring that my body gets the rest that it so evidently needs.
With any luck the hope vehicle has got a full tank of diesel and the desert and other terrain that I will be travelling over in the next few weeks and months will be a little forgiving.
The most difficult thing to have coped with recently was not the changes that took place but the rate at which they happened. The decline in eating capability and the onset of pain came not as a slow and osmotic process but as a battering ram. Before I could adjust I had to get my body off the end of the ram first, which was still swinging wildly.
As soon as you can do that then you are able to normalise things.
Add into the mix the fact that there have been a number of things to lift me physically as well as personally and I am back in a good place, albeit a little more tricky than it was before.
When I wrote about the return of the children it invoked the word "succour" (healing given in a time of need). Like all good medicine it is not just about what you take but about when you take it and their re-emergence has been timed perfectly.
Today Kitten took Boogle ice-skating as I was due to take Huffty to see Chelsea vs Stoke in the Premiership. So they both had the pleasure of the Italian clan (minus Mrs) and Boogle got a new pair of ice-boots. Huffty and I enjoyed an afternoon in the sun and a home victory. As lovely as my lad is, I am sure that he has just a tiny smidgen of thug in him. I say this in jest as at times he seemed much more interested in the chanting from the Chelsea (Matthew Harding) end that we were sitting close to. He was off his seat with his arms in a "V" joining in with eyes starting wildly, in a way that I have not seen before, whilst the action was at the other end of the pitch.
Hope I mention because it occurred to me today that perhaps I have never really understood what hope is. At some level I have always been dismissive of hope because I have always perceived that you make your future by your actions in the present. I have aways understood that what you project and hope for also play a part but today I understood this in a slightly different way.
Today, as I sat there with my son I touched hope in a way not where I envisaged wanting to see my kids grow up (a recurring motivation), but in a way where I saw myself with my kids grown up and that the perception had dragged me to the future.
There is a subtle but significant difference in the perception in that in the one today "hope" was a something real, a tangible vehicle to be used rather than simply a projection of what I would like to happen.
I prefer to base my aspirations on my own steam and on science but there is a long gap between the end of raditherapy, chemotherapy and reassessment and I am aware that my approach and frame of mind is of no little significance. I feel as if I am in a new phase of the process and will be looking to get the best out of it that I can whilst ensuring that my body gets the rest that it so evidently needs.
With any luck the hope vehicle has got a full tank of diesel and the desert and other terrain that I will be travelling over in the next few weeks and months will be a little forgiving.
Friday 27 August 2010
The Children Bring the Music - But where's Roxy's?
When I returned home from work today the children were back.
They have been away for a week with Kitten's parents and that has given us time to get things on an even keel here, not just from the perspective of my health but to get some balance back into our own relationship. It is easy for love to be tainted by disease but it can soon be dusted off.
Love between two human beings is a special commodity and has its own path and journey which, for many these days is enough. If it is harnessed, worked at and endured it provides a chalice that is always plentiful to drink from.
For many, including us, children take that love and break it down into the music of it. Just as music, children are a gift that allows us to touch our feelings in a way beyond words and normal experience. Children are a creation of our love and a personification of our union and show us aspects of ourselves which we are already familiar with and also things that we have never noticed, or have even denied.
What they do in day to day life is rattle around the house making noise and disturbance in a beautifully uninhibited way which can be memorisingly poetic or completely frustrating in equal measure.
Regardless of what they do they crystallise the love into a family.
The timing of their return is perfect for me. This morning I wrote of feeling as if I am back on my feet and the children have returned with their metaphorical musical pots and pans. It's a noisy brand; there's no suspicion of Vivaldi's "The Four Seasons" but it is their music and ours to share and it only serves to remind me that everything that you love or desire is worth working for.
Nb. My goddaughter "Roxy" is now overdue and should be issuing forth her eagerly awaited compostion very shortly! Come on Roxy; everyone is waiting.
They have been away for a week with Kitten's parents and that has given us time to get things on an even keel here, not just from the perspective of my health but to get some balance back into our own relationship. It is easy for love to be tainted by disease but it can soon be dusted off.
Love between two human beings is a special commodity and has its own path and journey which, for many these days is enough. If it is harnessed, worked at and endured it provides a chalice that is always plentiful to drink from.
For many, including us, children take that love and break it down into the music of it. Just as music, children are a gift that allows us to touch our feelings in a way beyond words and normal experience. Children are a creation of our love and a personification of our union and show us aspects of ourselves which we are already familiar with and also things that we have never noticed, or have even denied.
What they do in day to day life is rattle around the house making noise and disturbance in a beautifully uninhibited way which can be memorisingly poetic or completely frustrating in equal measure.
Regardless of what they do they crystallise the love into a family.
The timing of their return is perfect for me. This morning I wrote of feeling as if I am back on my feet and the children have returned with their metaphorical musical pots and pans. It's a noisy brand; there's no suspicion of Vivaldi's "The Four Seasons" but it is their music and ours to share and it only serves to remind me that everything that you love or desire is worth working for.
Nb. My goddaughter "Roxy" is now overdue and should be issuing forth her eagerly awaited compostion very shortly! Come on Roxy; everyone is waiting.
Someone Switched the Lights Back On
A few weeks ago I rambled on about swordfish and ospreys http://thebookofsilence.blogspot.com/2010/08/swordfish-and-ospreys.html
In the ramble I talked about swordfish diving deep to escape predators, well the last few weeks have taken me deep and my predator has been snapping at my fins (and worse), but I am glad to say that I am back at the surface and jumping into the light.
In the last few weeks I have really met the disease head on at every level, physical, mental, emotional and spritual and it has not been easy. It has been a time for introversion and pulling myself up by my boot straps, obviously with the help of loved ones. At times it is just case of "pull yourself" together, but there have been many different strands to getting through it.
Of course, it wasn't a conscious choice that took me there though perhaps the earlier piece gives an indication that I had a feeling for where I was heading .
The good news is that I have come through that time with a clearer head, a clearer focus and am feeling more relaxed about the big picture.
The next few weeks will not be easy but the fact that I feel concerned only with the end result and have met my fair share of "demons" and shaken them off makes me feel so much stronger.
Here's to calmer waters. I say that at least on a mental level because the kids arrive back from North Wales today. I am really looking forward to seeing them, but I shan't be looking forward to any more peace and quiet, that's for sure!
In the ramble I talked about swordfish diving deep to escape predators, well the last few weeks have taken me deep and my predator has been snapping at my fins (and worse), but I am glad to say that I am back at the surface and jumping into the light.
In the last few weeks I have really met the disease head on at every level, physical, mental, emotional and spritual and it has not been easy. It has been a time for introversion and pulling myself up by my boot straps, obviously with the help of loved ones. At times it is just case of "pull yourself" together, but there have been many different strands to getting through it.
Of course, it wasn't a conscious choice that took me there though perhaps the earlier piece gives an indication that I had a feeling for where I was heading .
The good news is that I have come through that time with a clearer head, a clearer focus and am feeling more relaxed about the big picture.
The next few weeks will not be easy but the fact that I feel concerned only with the end result and have met my fair share of "demons" and shaken them off makes me feel so much stronger.
Here's to calmer waters. I say that at least on a mental level because the kids arrive back from North Wales today. I am really looking forward to seeing them, but I shan't be looking forward to any more peace and quiet, that's for sure!
Thursday 26 August 2010
Today's Clinic
I have the radiotherapy early on the weekly "clinic" days. Clinic days are when I get to sit down with a consultant or their registrar to discuss the relevant issues.
Eating and weight loss were the hot topics.
I've had plenty thrown at me for pain when eating so there are three ways forward
I want to avoid the morphine if possible, just so I can keep the head clear. The food line might seem a bit grim but it is something that I would have to have after operation anyway and it would only be a temporary affair.
The inflammation in the oesophagus should ease as quickly as two weeks after treatment ends, so then eating will become easier again.
I will be persevering with normal food intake for a while, whilst monitoring my weight. I wouldn't want to lose more than another three or four pounds but there is also plenty of time to put weight back on before surgery.
Eating and weight loss were the hot topics.
I've had plenty thrown at me for pain when eating so there are three ways forward
- Stay on current medication and get more food down me
- Move to oral morphine in low doses and build them up if necessary
- Have a food line
I want to avoid the morphine if possible, just so I can keep the head clear. The food line might seem a bit grim but it is something that I would have to have after operation anyway and it would only be a temporary affair.
The inflammation in the oesophagus should ease as quickly as two weeks after treatment ends, so then eating will become easier again.
I will be persevering with normal food intake for a while, whilst monitoring my weight. I wouldn't want to lose more than another three or four pounds but there is also plenty of time to put weight back on before surgery.
Wednesday 25 August 2010
Proceeding with optimism
With the last cycle of chemotherapy administered it is a mill stone that has been removed from around my next.
The eating is getting worse and very painful, but it can be coped with. You don't get this t-shirt for free.
What has happened to me over the last day is that the feeling has changed from being stuck in a situation where I am running to stand still, to it being one of "only another two weeks of radiotherapy and I have to make the most of it".
I am resting well and doing everything I can to help myself along the way. Kitten is being a superstar and is constantly coming up with ideas of different food to cope with my needs chopping and changing.
Not only do I feel more optimistic but I also I also feel more peaceful. I am not quite in a field of long green grass full of golden daffodils with the distant hum of John Denver's "Annie's Song" accompanied by the incandescence of the midday sun, but I am there without the line "let me die of your arms".
As opposed to previous analogies where I have expressed the disease as the dragon, now I feel like the dragon who needs a lie down. I still have plenty of fire tucked away though.
Cymraes and Grumpy are off to see Monty Python's "Spamalot" in Cardiff tonight, a show that Kitten, Notoplip, Sushi, Billy the Fish and Saucy Sue saw on its pre-opening run in London three years ago. It was for Billy the Fish's birthday and what a rollicking show it was too. Largely based on the Holy Grail and The Life of Brian.
The eating is getting worse and very painful, but it can be coped with. You don't get this t-shirt for free.
What has happened to me over the last day is that the feeling has changed from being stuck in a situation where I am running to stand still, to it being one of "only another two weeks of radiotherapy and I have to make the most of it".
I am resting well and doing everything I can to help myself along the way. Kitten is being a superstar and is constantly coming up with ideas of different food to cope with my needs chopping and changing.
Not only do I feel more optimistic but I also I also feel more peaceful. I am not quite in a field of long green grass full of golden daffodils with the distant hum of John Denver's "Annie's Song" accompanied by the incandescence of the midday sun, but I am there without the line "let me die of your arms".
As opposed to previous analogies where I have expressed the disease as the dragon, now I feel like the dragon who needs a lie down. I still have plenty of fire tucked away though.
Cymraes and Grumpy are off to see Monty Python's "Spamalot" in Cardiff tonight, a show that Kitten, Notoplip, Sushi, Billy the Fish and Saucy Sue saw on its pre-opening run in London three years ago. It was for Billy the Fish's birthday and what a rollicking show it was too. Largely based on the Holy Grail and The Life of Brian.
Tuesday 24 August 2010
"Last" Chemo Session Over and Done with
I've just got back from the hosptial and my last scheduled chemotherapy session is over.
I was in a much better state than I was for last week's transfusion and managed pretty well. There was a wobbly moment when we left but I am comfortable in the "safety" of my own environment.
What will be interesting will be the impact of the chemotherapy effect on the vastly reduced choice of foods that I have. I hope that it does not serve to diminish the choice further.
There is no doubt that some of the issues I have had recently have been "in my head", but I think that reasonable given that there has been a strong impact on my physicality over the last couple of weeks. The deterioration in eating has been the toughest to get a grip on. Going forward I only have to worry about making it through the last couple of weeks of radiotherapy, whilst trying to minimise the discomfort and keeping the calorie count up.
All in all it's "Happy Dayz".
I was in a much better state than I was for last week's transfusion and managed pretty well. There was a wobbly moment when we left but I am comfortable in the "safety" of my own environment.
What will be interesting will be the impact of the chemotherapy effect on the vastly reduced choice of foods that I have. I hope that it does not serve to diminish the choice further.
There is no doubt that some of the issues I have had recently have been "in my head", but I think that reasonable given that there has been a strong impact on my physicality over the last couple of weeks. The deterioration in eating has been the toughest to get a grip on. Going forward I only have to worry about making it through the last couple of weeks of radiotherapy, whilst trying to minimise the discomfort and keeping the calorie count up.
All in all it's "Happy Dayz".
Today's Plan - Chemo Goes ahead
I was quite a while in clinic this morning but the end result is that my "bloods" are all normal and I will be having intravenous chemotherapy this afternoon and resuming my chemotherapy tablets today.
I have already had my radiotherapy and am getting some "scram" into my belly as ballast before what is my final chemotherapy session before any possibility of an operation.
I have already had my radiotherapy and am getting some "scram" into my belly as ballast before what is my final chemotherapy session before any possibility of an operation.
Monday 23 August 2010
Today and Tomorrow
Today I popped into work for a couple of hours. I had a task to clear down, but I could have done this from home.
Apart from the work, I had an appointment booked with the Mad Canadian Osteopath (he will enjoy the reintroduction of that term) and I also wanted to get a feel for my energy levels.
Suffice to say that my energy levels are not good. They have "popped" in the last week. This is nothing to do with food intake, as I have upped it and have at least temporarily won my weight battle. Rather it is the condition and treatment that have finally caught up with me and the consensus is that I have done rather well to have been energetic for so long.
I am feeling weak and tired, though only physically. Mentally, I still feel strong and recognise tomorrow's chemotherapy (should it take place) as something I need to get through by hook or by crook.
I will know when I go into clinic tomorrow whether I will be receiving chemotherapy. If I am then I will be off immediately to receive it and then straight down to radiotherapy to get my "daily dose".
What bothers me is not having chemotherapy; that is a well worn ticket. It is simply concern over my body's ability to accept it.
I have adopted some strange but simple and allegedly powerful Kinesiology techniques courtesy of my mother to help me through the process. I gave them a try when I was walking through the Marsden today and they seemed quite funky.
Above all the mental gearing must be right and the recognition that this is the last intravenous treatement I will receive before being reassess to see if I am fit for surgery.
There is no room for failure on my part. The treatment must be successful.
Apart from the work, I had an appointment booked with the Mad Canadian Osteopath (he will enjoy the reintroduction of that term) and I also wanted to get a feel for my energy levels.
Suffice to say that my energy levels are not good. They have "popped" in the last week. This is nothing to do with food intake, as I have upped it and have at least temporarily won my weight battle. Rather it is the condition and treatment that have finally caught up with me and the consensus is that I have done rather well to have been energetic for so long.
I am feeling weak and tired, though only physically. Mentally, I still feel strong and recognise tomorrow's chemotherapy (should it take place) as something I need to get through by hook or by crook.
I will know when I go into clinic tomorrow whether I will be receiving chemotherapy. If I am then I will be off immediately to receive it and then straight down to radiotherapy to get my "daily dose".
What bothers me is not having chemotherapy; that is a well worn ticket. It is simply concern over my body's ability to accept it.
I have adopted some strange but simple and allegedly powerful Kinesiology techniques courtesy of my mother to help me through the process. I gave them a try when I was walking through the Marsden today and they seemed quite funky.
Above all the mental gearing must be right and the recognition that this is the last intravenous treatement I will receive before being reassess to see if I am fit for surgery.
There is no room for failure on my part. The treatment must be successful.
Chemo Looms - Weight Loss Stemmed
It seems that I have won my battle with weight loss for now.
The weight loss was accelerating and I was losing a pound a day, but I have managed to keep my weight stable since the end of last week. The objective now will be to add a few pounds from my current 11st 2lbs to about 11st 5lbs and keep it there.
Because I can only eat small meals at a slow pace and it is diffcult to eat any complex carbohydrates it feels as if I am eating all day long! Heavily mashed potatoes seem to be the only complex carbohydrates that I can get down.
I will be having blood tests today to see if I will receive my final tranche of chemotherapy tomorrow and resume the capecitabine tablets. If I am ok then that will be a tough session.
The weight loss was accelerating and I was losing a pound a day, but I have managed to keep my weight stable since the end of last week. The objective now will be to add a few pounds from my current 11st 2lbs to about 11st 5lbs and keep it there.
Because I can only eat small meals at a slow pace and it is diffcult to eat any complex carbohydrates it feels as if I am eating all day long! Heavily mashed potatoes seem to be the only complex carbohydrates that I can get down.
I will be having blood tests today to see if I will receive my final tranche of chemotherapy tomorrow and resume the capecitabine tablets. If I am ok then that will be a tough session.
Sunday 22 August 2010
An Unmerited and Comical Change of Disposition?
SandD just popped around to give me a birthday present, which was intentionally not for this moment but for the moment.
A magnum of Veuve Clicquot explains that little riddle, which is intended for the day that I get the all clear. Mmmmmmmmmm. Cheers.
I did well for presents from my family and the humour was out from Notoplip and Sushi again with a big winter Welsh coat, matching woolly hat (the sort that comes down over your ears with hanging tassles) and flip flops.
SandD's visit was revealing in a different way though in that I got to hear the gossip that my English mates are dishing out whilst I am on the end of a drip and cannula. The gossip is that the blood I recieved in the transfusion on my birthday was from a gay Englishman.
Cabbie, take me to Mincing Lane in the City, I have a new walk to practice.
Billy the Fish (one half of SandD) proclaimed that my days as a Welshman are numbered!
A magnum of Veuve Clicquot explains that little riddle, which is intended for the day that I get the all clear. Mmmmmmmmmm. Cheers.
I did well for presents from my family and the humour was out from Notoplip and Sushi again with a big winter Welsh coat, matching woolly hat (the sort that comes down over your ears with hanging tassles) and flip flops.
SandD's visit was revealing in a different way though in that I got to hear the gossip that my English mates are dishing out whilst I am on the end of a drip and cannula. The gossip is that the blood I recieved in the transfusion on my birthday was from a gay Englishman.
Cabbie, take me to Mincing Lane in the City, I have a new walk to practice.
Billy the Fish (one half of SandD) proclaimed that my days as a Welshman are numbered!
Changing of the Guard
The day panned out rather differently to how it had been planed a few weeks ago. The original expectation had been built around an intended visit to the south coast for the 18th birthday of Film maker (one of the few I know to share my birthday). Film maker is Notoplip's nephew (his sister's son).
I have rarely met the film maker but am more familiar with his mum and dad (the Carpenters) and his elder sister "coat red".
This all pans back to 1991, which was the year that I met Notoplip, Billy the Fish, D.A. Decorator, Rusty Pipes and Naked Diva.
Having already taken a holiday with theses chaps in early July of this year, Rusty Pipes dropped out of a holiday to Ibiza at the last minute and Notoplip persuaded me to jump into his shoes at short notice.
Apart from being a lads' holiday many of Notoplip's and Mr Carpenter's family were there as this is when the Carpenter's were married, at a church on top of a hill inland in Ibiza. I remember that it was a glorious day, not one to be "suited and booted" but we did so and donned the obligatory shades making the lads look like extras from the Sopranos.
Notoplip and I had been sharing a house for about a month and his eldest daughter (then about four, I think) was a regular visitor. The Carpenter's eldest (Coat Red) was of a similar age and this was the oddest of holiday's in that we all managed to combine riotous night life with family time around the pool with the kids.
Whilst I am not overly short, I am when put into context against most of this group of chaps and I was given the nickname "Little man", which still sticks with Notoplip's daughter "Ice Cube" and Coat Red. As do the jokes about "careful or little man will fall down the plug hole". Ice Cube is so called because of an event when I joined her and Notoplip on their Ibizan holiday about eight years later....
Having returned from a night out on my own (which is never on your own in Ibiza - I met someone that night who I still keep in touch with), I settled down on the sofa at 8am to try and grab some sleep. My entrance disturbed Ice Cube who thought it would be a great idea to stand over me and drip an ice cube on my head for what seemed to be an eternity. In reality it was probably about 20 minutes. She was determined to provoke a reaction and I was determined not to give one in the moment. I was exhausted from a night of the high life and only now that she has been a regular clubber herself does she appreciate quite what she put me through. Very funny.
The last time I saw the Carpenter's and they now fuller family was in the year of Notoplip's 40th, some four years ago, when we all went to a well known family themed resort to celebrate his birthday. There was no Film maker present but I was able to catch up with the Carpenter's who I see very infrequently. It is their 20th anniversay next year, so who knows, we may be in a fit shape to make the journey then.
My lack of fitness for the trip was apparent earlier in the week, hence the Friday departure of the kids to North Wales and my mother's visit here to provide cover for Kitten.
So yesterday's intended trip was replaced by an amble around the shopping centre and stroll by the river Thames with my mother, sister and brother-in-law. I felt washed out after the stroll. In fact I felt washed out whilst I was walking. It was one foot in front of the other stuff. I guess that must be what it feels like to have M.E. (also known as yuppie flu) or some other energy debilitating illness
Despite the travails of the body, my mind was in a good frame and I was being well looked after by my mother who departed in the evening leaving me relaxed in the company of a gripping Tri-nations rugby match between South Africa and New Zealand. This was followed by the second half of the Premiership match between Wigan and Chelsea, so I was somewhat in "Bloke Heaven".
No sooner had I put a saucer of milk outside the front door than the purring Kitten arrived home from North Wales. Timed impeccably, though without purpose, to let me see the end of the game.
On a final note; Happy Birthday to the Film Maker.
I have rarely met the film maker but am more familiar with his mum and dad (the Carpenters) and his elder sister "coat red".
This all pans back to 1991, which was the year that I met Notoplip, Billy the Fish, D.A. Decorator, Rusty Pipes and Naked Diva.
Having already taken a holiday with theses chaps in early July of this year, Rusty Pipes dropped out of a holiday to Ibiza at the last minute and Notoplip persuaded me to jump into his shoes at short notice.
Apart from being a lads' holiday many of Notoplip's and Mr Carpenter's family were there as this is when the Carpenter's were married, at a church on top of a hill inland in Ibiza. I remember that it was a glorious day, not one to be "suited and booted" but we did so and donned the obligatory shades making the lads look like extras from the Sopranos.
Notoplip and I had been sharing a house for about a month and his eldest daughter (then about four, I think) was a regular visitor. The Carpenter's eldest (Coat Red) was of a similar age and this was the oddest of holiday's in that we all managed to combine riotous night life with family time around the pool with the kids.
Whilst I am not overly short, I am when put into context against most of this group of chaps and I was given the nickname "Little man", which still sticks with Notoplip's daughter "Ice Cube" and Coat Red. As do the jokes about "careful or little man will fall down the plug hole". Ice Cube is so called because of an event when I joined her and Notoplip on their Ibizan holiday about eight years later....
Having returned from a night out on my own (which is never on your own in Ibiza - I met someone that night who I still keep in touch with), I settled down on the sofa at 8am to try and grab some sleep. My entrance disturbed Ice Cube who thought it would be a great idea to stand over me and drip an ice cube on my head for what seemed to be an eternity. In reality it was probably about 20 minutes. She was determined to provoke a reaction and I was determined not to give one in the moment. I was exhausted from a night of the high life and only now that she has been a regular clubber herself does she appreciate quite what she put me through. Very funny.
The last time I saw the Carpenter's and they now fuller family was in the year of Notoplip's 40th, some four years ago, when we all went to a well known family themed resort to celebrate his birthday. There was no Film maker present but I was able to catch up with the Carpenter's who I see very infrequently. It is their 20th anniversay next year, so who knows, we may be in a fit shape to make the journey then.
My lack of fitness for the trip was apparent earlier in the week, hence the Friday departure of the kids to North Wales and my mother's visit here to provide cover for Kitten.
So yesterday's intended trip was replaced by an amble around the shopping centre and stroll by the river Thames with my mother, sister and brother-in-law. I felt washed out after the stroll. In fact I felt washed out whilst I was walking. It was one foot in front of the other stuff. I guess that must be what it feels like to have M.E. (also known as yuppie flu) or some other energy debilitating illness
Despite the travails of the body, my mind was in a good frame and I was being well looked after by my mother who departed in the evening leaving me relaxed in the company of a gripping Tri-nations rugby match between South Africa and New Zealand. This was followed by the second half of the Premiership match between Wigan and Chelsea, so I was somewhat in "Bloke Heaven".
No sooner had I put a saucer of milk outside the front door than the purring Kitten arrived home from North Wales. Timed impeccably, though without purpose, to let me see the end of the game.
On a final note; Happy Birthday to the Film Maker.
Saturday 21 August 2010
Angels, Demons and Dylan Thomas
Kitten has taken the children up to the "Outlaws" in North Wales where they will be staying for a week. I haven't seen them much this week (including my birthday), so I am missing the "little devils". It sounds as if they are having a fine time up there as Kitten's brother "The Prodigal son" is also present (I wonder what they are eating!)
Kitten has, as ever, been an angel this week and has done her very best to keep my spirits high. Whilst she is away my mother has been wearing Kitten's "chief carer hat", so many thanks to her too.
The above references to angels and devils isn't the point of this post though rather it is the on-going joust with my own psyche. I have talked at length before about not seeing my experience of cancer as being a battle because the cancer is part of me rather than being some "alien invading force". Of course, there are times when it is impossible not to feel some anger directed at your own situation.
The last couple of weeks the cancer has stuck me into a small dark cupboard, blindfolded me and given me a damned good "kick in", or at least that's how it feels.
Now that I feel slightly stronger there is part of me that would like to return the favour with interest but that is a negative feeling that goes against how I really feel and, as we know, it isn't a real scenario anyway. I do fight but it is at those moments when things go horribly wrong or with issues like trying to stem my weight loss. I am happy to say that I have put a pound back on this morning, which could be transient but rather I see it as a result of efforts over the last week and I hope that it is the start of a trend reversal.
The following quote from the Welsh poet Dylan Thomas is one of my favourites, despite not being as snappy a quote as provided by writers such as Oscar Wilde and it conveys the essence of my philsophy of my journey with the cancer:
I hold a beast, an angel and a madman in me, and my enquiry is as to their working, and my problem is their subjugation and victory, downthrow and upheaval, and my effort is their self-expression
A recent conversation with the osteopath put the above quote into some kind of perspective in relation to my own situation. I am not exactly sure how the conversation came about but the pivotal line was that you shouldn't wish to get rid of your demons because if you do you will lose your angels too.
That sums my thought up in that like anything in life illness is sometimes part of the journey and it is a journey that one travels and learns from. There can be stormy seas and huge risks and also there can be sunny simple days of mill ponds but you have to trust that sooner or later your little boat will come into harbour and you can return to "terra firma". When you do, you will do so in the knowledge that your angels and demons are there to serve you, not you to serve them.
I am not talking about real angels and demons, rather I am talking about one's own essence and understand the self.
Instead of taking the cancer into the cupboard and fighting it until there is an outright winner I would rather rise above it and gently place a shroud over it as I calmly move on. Make no mistake though, I will fight as and when I have to, but I won't fight aimlessly.
I'm going to keep on digging the trenches when I need to, potentially starting with chemotherapy next Tuesday. It will be interesting to see whether I make a better fist of it than I did with the blood transfusion on Thursday.
Kitten has, as ever, been an angel this week and has done her very best to keep my spirits high. Whilst she is away my mother has been wearing Kitten's "chief carer hat", so many thanks to her too.
The above references to angels and devils isn't the point of this post though rather it is the on-going joust with my own psyche. I have talked at length before about not seeing my experience of cancer as being a battle because the cancer is part of me rather than being some "alien invading force". Of course, there are times when it is impossible not to feel some anger directed at your own situation.
The last couple of weeks the cancer has stuck me into a small dark cupboard, blindfolded me and given me a damned good "kick in", or at least that's how it feels.
Now that I feel slightly stronger there is part of me that would like to return the favour with interest but that is a negative feeling that goes against how I really feel and, as we know, it isn't a real scenario anyway. I do fight but it is at those moments when things go horribly wrong or with issues like trying to stem my weight loss. I am happy to say that I have put a pound back on this morning, which could be transient but rather I see it as a result of efforts over the last week and I hope that it is the start of a trend reversal.
The following quote from the Welsh poet Dylan Thomas is one of my favourites, despite not being as snappy a quote as provided by writers such as Oscar Wilde and it conveys the essence of my philsophy of my journey with the cancer:
I hold a beast, an angel and a madman in me, and my enquiry is as to their working, and my problem is their subjugation and victory, downthrow and upheaval, and my effort is their self-expression
A recent conversation with the osteopath put the above quote into some kind of perspective in relation to my own situation. I am not exactly sure how the conversation came about but the pivotal line was that you shouldn't wish to get rid of your demons because if you do you will lose your angels too.
That sums my thought up in that like anything in life illness is sometimes part of the journey and it is a journey that one travels and learns from. There can be stormy seas and huge risks and also there can be sunny simple days of mill ponds but you have to trust that sooner or later your little boat will come into harbour and you can return to "terra firma". When you do, you will do so in the knowledge that your angels and demons are there to serve you, not you to serve them.
I am not talking about real angels and demons, rather I am talking about one's own essence and understand the self.
Instead of taking the cancer into the cupboard and fighting it until there is an outright winner I would rather rise above it and gently place a shroud over it as I calmly move on. Make no mistake though, I will fight as and when I have to, but I won't fight aimlessly.
I'm going to keep on digging the trenches when I need to, potentially starting with chemotherapy next Tuesday. It will be interesting to see whether I make a better fist of it than I did with the blood transfusion on Thursday.
Friday 20 August 2010
Not to be "Trifled" with
As much as yesterday was bad, today has been good. It seems to be a pattern within these difficult periods.
One of the best things about today has been a noticeable reduction in the levels of nausea, which is probably in turn because I have eaten better.
One of my little fillers is small tubs of trifle.
Being brought up in a South Wales family the "Sunday tea" was a weekly occurrence, which consisted of a few savouries but mostly home baked cakes, tarts and the obligatory trifle.
Mr "Butcher" (my mother's brother) and I had a particular fondness for our desserts and especially a healthy looking bowl of trifle. Mr Butcher is on record recently as saying that in my situation he would be liquidising trifle and cake. I believe him to be very fond of an M&S trifle (the family size) and I can certainly relate to his sentiment. I will have to bear this in mind.
Whilst I am using these sorts of snacks to bulk out the diet I have managed to get a couple of the hospital's energy drinks down, more difficult to do because of acid kick that burns (don't ask why trifle is any easier).
I have also had more complete food such as mash and casseroled beef as well as the daily mushy cereal, rice pudding and soup.
OK, so you don't need the detail but the point is that I am getting a grip, trying to get the calories in and put a floor on the weight loss and, equally as important, keep myself hydrated.
That can only be a good thing.
One of the best things about today has been a noticeable reduction in the levels of nausea, which is probably in turn because I have eaten better.
One of my little fillers is small tubs of trifle.
Being brought up in a South Wales family the "Sunday tea" was a weekly occurrence, which consisted of a few savouries but mostly home baked cakes, tarts and the obligatory trifle.
Mr "Butcher" (my mother's brother) and I had a particular fondness for our desserts and especially a healthy looking bowl of trifle. Mr Butcher is on record recently as saying that in my situation he would be liquidising trifle and cake. I believe him to be very fond of an M&S trifle (the family size) and I can certainly relate to his sentiment. I will have to bear this in mind.
Whilst I am using these sorts of snacks to bulk out the diet I have managed to get a couple of the hospital's energy drinks down, more difficult to do because of acid kick that burns (don't ask why trifle is any easier).
I have also had more complete food such as mash and casseroled beef as well as the daily mushy cereal, rice pudding and soup.
OK, so you don't need the detail but the point is that I am getting a grip, trying to get the calories in and put a floor on the weight loss and, equally as important, keep myself hydrated.
That can only be a good thing.
Feeling Better Today
I am feeling much more like my normal self today.
The transfusion must be doing its stuff. Whatever it is I feel more "solid" and more energised to tackle the things that have been weighing me down.
I've done a productive morning's work and I am also drinking and eating better. I am just sitting down to some "broccoli, stilton and cream" soup. There' s plenty of calories there but, if I am being honest, it wouldn't be the first thing I would pick of a menu in a restaurant.
A bit of stability from here would be very welcome in helping me deal with the second half of the radiotherapy treatment and the upcoming chemotherapy next week.
I am booking myself an appointment with Canadian osteopath for next Monday morning and there are one or two other tricks up my sleeve that I will talk about later.
The transfusion must be doing its stuff. Whatever it is I feel more "solid" and more energised to tackle the things that have been weighing me down.
I've done a productive morning's work and I am also drinking and eating better. I am just sitting down to some "broccoli, stilton and cream" soup. There' s plenty of calories there but, if I am being honest, it wouldn't be the first thing I would pick of a menu in a restaurant.
A bit of stability from here would be very welcome in helping me deal with the second half of the radiotherapy treatment and the upcoming chemotherapy next week.
I am booking myself an appointment with Canadian osteopath for next Monday morning and there are one or two other tricks up my sleeve that I will talk about later.
Yesterday and Events Leading to it
It would be easy to say that "I 've never heard such a fuss over having a blood transfusion" and, at a superficial level I would take that on-board as a fair comment. However, yesterday's events were less a reflection of the simple procedure and more an indicator of my marked decline over the last few weeks. Whilst the rest of post appears to be gloomy it is a question of how I move on from here rather than what has happened over the last few weeks. I am looking personally and in conjunction with the hospital to see how I get a good foothold going forward to make the best of the rest of the treatment.
Until my last session of chemotherapy, which also marked the commencement of radiotherapy I have breezed through anything that has been thrown at me. Sure, there have been tough days after chemotherapy and difficult psychological periods to deal with but no sustained downward patterns; just peak and troughs.
What has happened over the last few weeks has been the manifestation of symptoms produced by a sustained battery of treatment together with the effects of the new radiotherapy treatment.
Perhaps one of the most wearing effects has been that of constant nausea. I cannot complain of "heavy" nausea but I have had sustained "queasiness". You may recall that my method of dealing with this in previous cycles of chemotherapy was to eat lots and this in turn appears to mask the symptoms. That approach is no longer an option due to eating problems.
Perhaps the greatest significator over the last three weeks or so has been the deterioration in my ability to eat. The responsibility for this can be laid at the door of the radiotherapy treatment but it has now got to the stage where drinking water is very difficult and the best I manage is sips. That is probably a bit of an overly dramatic statement as it might seem to imply that I can't eat anything, but I am still OK with warm simple foods. Rice puddings, custards and things of similar substance are still OK and I ate some cod in sauce with rice last night. Things like creamy mash are still also OK.
Even though I can eat it is now a very uncomfortable and slow process.
As I have pointed out before this is something which a lot of people have to cope with from the outset, but I have had several months of uncomfortable eating, which has now lead to downright difficult eating. Not only is eating difficult but it is often sore. I have to shy away from acidic and cold foods and drinks. If you are of a sensitive disposition then I suggest that you skip to the next paragraph because........... eating some foods, particularly liquids feels like I am sticking slugs down my throat and they gently slither down to my stomach. Not a pleasant image and not a pleasant experience.
Then there has been the physical pain encountered when getting things stuck with breeds a fear of eating. Previously, getting food stuck was something that could be dealt with by shifting it with liquid. That is no longer the case and getting small things stuck, like tablets leads to intense pain.
The overriding issues when going to hospital though are the omnipresent feeling of nausea, which is aided and abetted by having only a partially full stomach and a mixture of psychosomatic and physical triggers with smells.
My treatment regime should have lasted three cycles until operation and I should now be a month into my recovery from theatre. Instead the hammering I have taken is leaving its legacy of triggers which affect my treatment-heightened sense of smell to certain things. It is obvious that some of these triggers are produced by the psyche because just thinking of certain places or situations can trigger a mild duplication of the reaction. When added to the nausea these become a heady cocktail.
Simple triggers are such as walking into the hospital foyer where the chemical smell of cleanliness is particularly heavy. Others include the smell of the gloves that the nurses use when administering treatment. The standard saline solution now produces an instant and unequivocal response and they now have to use an alternative. These are all things that I used to breeze through but as my "resistance" has been reduced by experience they have become major obstacles.
Yesterday's experience reflected many of the things that I have highlighted and on a partially full stomach I was in difficultly as soon as I got into the foyer. The real problems started when the blood flow started there was a smell and taste in my mouth and an immediate reaction. They decided to administer intravenous anti-sickness, which is something that I have with each chemotherapy treatment. So, I am not stranger to this but it provoked a response of disorientation and agitation and I must confess that panic started to set in.
I am definitely not a panicker but there was a real fear setting in that maybe I would fail, for the first time, to get through the treatment. I was soothed by a visit from the doctor who assured my that the reaction to the anti-sickness drug was not an unusual reaction and it was related to the drug rather than my general condition.
I was not in great physical shape yesterday and not particularly inclined to eat or drink due to the smells of the environment, which just made me weaker. However, I got through it and had one bag of blood, marched off for radiotherapy and then came back for another two and a half hours for another bag. As soon as I got home I was able to eat.
This something that you or eye would do without batting an eyelid under normal circumstances, but things have weighed on me both physically and mentally over the last couple of weeks. It's real. I've lost 8lbs (3.5kg in that time) but free fall doesn't last for ever and I will spend the weekend making sure that I get myself on an even keel.
I have been get yet more medicine to help the eating process. There is an anaesthetic for the oesophagus to be taken before meals, if necessary, and liquid anti-sickness to be taken twice a day to get on top of the constant nausea.
It is times like these i.e. where there is a constant decline where the spirit is tested but I intend to be equal to it. I have plenty of inner resource and plenty of support around me (he says as he watches his mother mop the kitchen floor!)
Until my last session of chemotherapy, which also marked the commencement of radiotherapy I have breezed through anything that has been thrown at me. Sure, there have been tough days after chemotherapy and difficult psychological periods to deal with but no sustained downward patterns; just peak and troughs.
What has happened over the last few weeks has been the manifestation of symptoms produced by a sustained battery of treatment together with the effects of the new radiotherapy treatment.
Perhaps one of the most wearing effects has been that of constant nausea. I cannot complain of "heavy" nausea but I have had sustained "queasiness". You may recall that my method of dealing with this in previous cycles of chemotherapy was to eat lots and this in turn appears to mask the symptoms. That approach is no longer an option due to eating problems.
Perhaps the greatest significator over the last three weeks or so has been the deterioration in my ability to eat. The responsibility for this can be laid at the door of the radiotherapy treatment but it has now got to the stage where drinking water is very difficult and the best I manage is sips. That is probably a bit of an overly dramatic statement as it might seem to imply that I can't eat anything, but I am still OK with warm simple foods. Rice puddings, custards and things of similar substance are still OK and I ate some cod in sauce with rice last night. Things like creamy mash are still also OK.
Even though I can eat it is now a very uncomfortable and slow process.
As I have pointed out before this is something which a lot of people have to cope with from the outset, but I have had several months of uncomfortable eating, which has now lead to downright difficult eating. Not only is eating difficult but it is often sore. I have to shy away from acidic and cold foods and drinks. If you are of a sensitive disposition then I suggest that you skip to the next paragraph because........... eating some foods, particularly liquids feels like I am sticking slugs down my throat and they gently slither down to my stomach. Not a pleasant image and not a pleasant experience.
Then there has been the physical pain encountered when getting things stuck with breeds a fear of eating. Previously, getting food stuck was something that could be dealt with by shifting it with liquid. That is no longer the case and getting small things stuck, like tablets leads to intense pain.
The overriding issues when going to hospital though are the omnipresent feeling of nausea, which is aided and abetted by having only a partially full stomach and a mixture of psychosomatic and physical triggers with smells.
My treatment regime should have lasted three cycles until operation and I should now be a month into my recovery from theatre. Instead the hammering I have taken is leaving its legacy of triggers which affect my treatment-heightened sense of smell to certain things. It is obvious that some of these triggers are produced by the psyche because just thinking of certain places or situations can trigger a mild duplication of the reaction. When added to the nausea these become a heady cocktail.
Simple triggers are such as walking into the hospital foyer where the chemical smell of cleanliness is particularly heavy. Others include the smell of the gloves that the nurses use when administering treatment. The standard saline solution now produces an instant and unequivocal response and they now have to use an alternative. These are all things that I used to breeze through but as my "resistance" has been reduced by experience they have become major obstacles.
Yesterday's experience reflected many of the things that I have highlighted and on a partially full stomach I was in difficultly as soon as I got into the foyer. The real problems started when the blood flow started there was a smell and taste in my mouth and an immediate reaction. They decided to administer intravenous anti-sickness, which is something that I have with each chemotherapy treatment. So, I am not stranger to this but it provoked a response of disorientation and agitation and I must confess that panic started to set in.
I am definitely not a panicker but there was a real fear setting in that maybe I would fail, for the first time, to get through the treatment. I was soothed by a visit from the doctor who assured my that the reaction to the anti-sickness drug was not an unusual reaction and it was related to the drug rather than my general condition.
I was not in great physical shape yesterday and not particularly inclined to eat or drink due to the smells of the environment, which just made me weaker. However, I got through it and had one bag of blood, marched off for radiotherapy and then came back for another two and a half hours for another bag. As soon as I got home I was able to eat.
This something that you or eye would do without batting an eyelid under normal circumstances, but things have weighed on me both physically and mentally over the last couple of weeks. It's real. I've lost 8lbs (3.5kg in that time) but free fall doesn't last for ever and I will spend the weekend making sure that I get myself on an even keel.
I have been get yet more medicine to help the eating process. There is an anaesthetic for the oesophagus to be taken before meals, if necessary, and liquid anti-sickness to be taken twice a day to get on top of the constant nausea.
It is times like these i.e. where there is a constant decline where the spirit is tested but I intend to be equal to it. I have plenty of inner resource and plenty of support around me (he says as he watches his mother mop the kitchen floor!)
Thursday 19 August 2010
All in One Piece
I've had a few queries as to whether I am still in one piece.
Indeed I am, but it was a long and a difficult day. We got back about 6:30pm.
I did get a birthday pint but unfortunately, is wasn't beer!!! (copyright Big G)
All OK though and, once again thanks for all the wishes which I have received through a number of different media.
There's quite a lot of information to share, so I will blog properly tomorrow.
Rest time now.
Indeed I am, but it was a long and a difficult day. We got back about 6:30pm.
I did get a birthday pint but unfortunately, is wasn't beer!!! (copyright Big G)
All OK though and, once again thanks for all the wishes which I have received through a number of different media.
There's quite a lot of information to share, so I will blog properly tomorrow.
Rest time now.
Thanks
Thank you for alll the comments, texts, Facebook messages, cards and presents.
Well I got to 45, so now I am closer to 50 than I am to 40!
Today is one of those "pull yourself together days" but it is good to know that I have the two most powerful forces to help me - The will and love.
There have been more developments over the last day, but I will focus on getting myself down the hospital and getting back this evening. Hopefully, I will feel much better after I have received the blood that someone has generously donated.
Cheers - Swordfish
Well I got to 45, so now I am closer to 50 than I am to 40!
Today is one of those "pull yourself together days" but it is good to know that I have the two most powerful forces to help me - The will and love.
There have been more developments over the last day, but I will focus on getting myself down the hospital and getting back this evening. Hopefully, I will feel much better after I have received the blood that someone has generously donated.
Cheers - Swordfish
Wednesday 18 August 2010
Happy Birthday!
As I write, it is still Wednesday night but very nearly Thursday!
I have tried to stay up past midnight so I could post this blog first thing but old age has caught me and I really need to go to bed!
So, dear followers, friends and family, I ask you all to send your finest wishes, your love and kindest thoughts to my lovely, wonderful, funny, inspirational (and sometimes a little grumpy) husband and shout out loud
"HAPPY BIRTHDAY SWORDFISH!"
I love you x
I have tried to stay up past midnight so I could post this blog first thing but old age has caught me and I really need to go to bed!
So, dear followers, friends and family, I ask you all to send your finest wishes, your love and kindest thoughts to my lovely, wonderful, funny, inspirational (and sometimes a little grumpy) husband and shout out loud
"HAPPY BIRTHDAY SWORDFISH!"
I love you x
Beyond the Statistics - The Big Picture
I am aware that there has been a lot of detail and a lot of statistics from me over the recent period and perhaps less concise imagery of how I am feeling.
It is clear that the last period has taken me down somewhat, but down from what was a position of comfort. It has been a rapidly changing and moving feast and what I have been trying to do is to "dig faster" than it can move.
Firstly, although there has been a deterioration I would not say that I look ill. Certainly anyone who didn't know me would not be able to assume that I had a well advanced cancer. The only sign would be a very tightly cropped haircut, but even that has had good colour during the latest phases of treatment and so just looks like a very tightly cropped haircut! I do look pale but not unnervingly so. I certainly do not look like Uncle Fester of the Adams family.
When I started the radiotherapy I was 11st 9lbs, that's about 74kg over the last couple of weeks I have lost about 7lbs (about 3kg) so I am now 11st 2lbs and 71kg. This is at the bottom end of what I consider a healthy spectrum for me and it should be recognised that a lot of the weight I have lost is "good weight" i.e musculature from shoulders, arms, back and legs rather from where I would like i.e. the waistline. That said, I do not look thin.
The important thing from here, weight wise, is that I get a grip of the downward trend and stick a bottom on it. This is more difficult that it might seem as it would be easy to say "just eat more" but it is getting increasingly difficult to get the calories in. This issue is worthy of a separate blog.
The biggest concern at the moment is energy levels, but these are likely to be at least partially addressed with tomorrow's blood transfusion. The treatment also demands that I rest more now.
Just as important is what goes on in my head. When there is a sudden deterioration it is not always obvious to the outside world but the fact that I have lost weight, have difficultly eating have problems with my ability to carry oxygen (haemoglobin), potentially have problems clotting my blood, have been suffering bouts of pain is a heady cocktail to get a grip of. All of these have manifesting and obvious symptoms except the blood clotting issue. So it becomes more important to deliver on a personal level and make the necessary adjustments to keep the spirits high.
I guess that further near-term blogs will be about what I am doing to keep on top of things. Of course I am not alone in this process and actions such as deferring my chemotherapy are actions by the hospital that are recognition of the burden that my body is having to carry at the moment. When I failed to get into theatre in July I told the hospital that I still wanted to follow a curative path, if possible, and that they should feel free to "smash me" if it was necessary. Well, it seems that they have taken this on board!
Things may be tougher than they were but it is not as if I am in hospital bed-ridden. After an early start, I have finished work for the morning and will be checking in for the afternoon. In the meantime I shall be enjoying a bit of fresh air with Kitten.
It is clear that the last period has taken me down somewhat, but down from what was a position of comfort. It has been a rapidly changing and moving feast and what I have been trying to do is to "dig faster" than it can move.
Firstly, although there has been a deterioration I would not say that I look ill. Certainly anyone who didn't know me would not be able to assume that I had a well advanced cancer. The only sign would be a very tightly cropped haircut, but even that has had good colour during the latest phases of treatment and so just looks like a very tightly cropped haircut! I do look pale but not unnervingly so. I certainly do not look like Uncle Fester of the Adams family.
When I started the radiotherapy I was 11st 9lbs, that's about 74kg over the last couple of weeks I have lost about 7lbs (about 3kg) so I am now 11st 2lbs and 71kg. This is at the bottom end of what I consider a healthy spectrum for me and it should be recognised that a lot of the weight I have lost is "good weight" i.e musculature from shoulders, arms, back and legs rather from where I would like i.e. the waistline. That said, I do not look thin.
The important thing from here, weight wise, is that I get a grip of the downward trend and stick a bottom on it. This is more difficult that it might seem as it would be easy to say "just eat more" but it is getting increasingly difficult to get the calories in. This issue is worthy of a separate blog.
The biggest concern at the moment is energy levels, but these are likely to be at least partially addressed with tomorrow's blood transfusion. The treatment also demands that I rest more now.
Just as important is what goes on in my head. When there is a sudden deterioration it is not always obvious to the outside world but the fact that I have lost weight, have difficultly eating have problems with my ability to carry oxygen (haemoglobin), potentially have problems clotting my blood, have been suffering bouts of pain is a heady cocktail to get a grip of. All of these have manifesting and obvious symptoms except the blood clotting issue. So it becomes more important to deliver on a personal level and make the necessary adjustments to keep the spirits high.
I guess that further near-term blogs will be about what I am doing to keep on top of things. Of course I am not alone in this process and actions such as deferring my chemotherapy are actions by the hospital that are recognition of the burden that my body is having to carry at the moment. When I failed to get into theatre in July I told the hospital that I still wanted to follow a curative path, if possible, and that they should feel free to "smash me" if it was necessary. Well, it seems that they have taken this on board!
Things may be tougher than they were but it is not as if I am in hospital bed-ridden. After an early start, I have finished work for the morning and will be checking in for the afternoon. In the meantime I shall be enjoying a bit of fresh air with Kitten.
Tuesday 17 August 2010
Plus ça change, plus c'est la même chose
As the french proverb goes; "The more that things change the more that they stay the same".
These next few days promised to be very difficult for me and I had begun to "steel myself".
Yesterday's appointment with the Canadian osteopath put me on a better footing in respect of my energy levels, but the prospect of radiotherapy each day, chemotherapy tomorrow and blood transfusion Thursday were a daunting prospect.
I feel as if the treatment has given me a good old-fashioned battering recently (quite appropriate for a fish, I suppose) and not just on a physical level. Just entering the main foyer of the Marsden triggers nausea from the distinctive disinfected smell. Every time I go in I immediately visualise a intravenous bag of chemo. Then there is is the progressive eating dysfunction.
It is times like these where it is obvious that you have come to a crossroads and you have to raise your game mentally and stay strong. By that I don't mean just attempting to "barrel through" but to remind yourself that no matter how difficult the situation becomes it is the "holy grail" of a clean bill of health that it is important. There is no point in thinking about it when it is too later, rather it is better to create a positive framework in which the treatment can get full sight of the illness and target it. This means attempting to calm irrational fears and mental triggers such as that described about the Marsden foyer
In some ways this is easier said than done, but then there are events.
Events are always fast moving and today's clinic pre-chemotherapy was no exception.
Last week I was advised that my platelet count was falling and would be monitored. Platelets are responsible for clotting the blood and insufficient levels can lead to bleeding problems. Today I was told that they had fallen below acceptable levels (42 actual vs 100 advised), so I will be finishing today and tomorrow's chemotherapy tablets but will then wait a week before being reviewed. It is anticipated that the chemotherapy, both intravenous and tablet, will begin again next Tuesday.
The most significant issue is assuring the continuance of the radiotherapy and the doctors are happy to delay the intravenous chemotherapy so long as it is administered during the radiotherapy course i.e. the next three weeks. However, it is important that I restart the tablets as soon as possible as they work well with the radiotherapy.
My haemoglobin levels have fallen further to 10.4 from 11, which means that I am considerably anaemic though nothing like my initial levels. Still, I am well below the level of 12 required for best results of the radiotherapy.
The combination of these factors i.e. eating difficulties, platelets and haemoglobin explain why I have being feeling listless, so I can just focus on Thursday's transfusion which should make be feel much better. I might need a good book as I am up for six hours of it. All in all the changes from the expected are keeping me on a steady pathway (hence the title).
I will be digging deep from here. There is only three weeks of treatment left, plus the run-off from the radiotherapy and chemotherapy so I am determined to make it work no matter how uncomfortable. It is as clear as daylight now that this effort includes large doses of rest.
Thank goodness for the home entertainment facilities, he says whilst nudging up the volume on the surround sound system! What a great investment they were, eh Kitten?
All this probably sound like I have spent most of my day on my back but I've manage three hours at the hospital, three working and a couple taking Huffty to football (though the latter really is sitting on my backside and chatting). Perhaps too busy for a quiet day right now.
These next few days promised to be very difficult for me and I had begun to "steel myself".
Yesterday's appointment with the Canadian osteopath put me on a better footing in respect of my energy levels, but the prospect of radiotherapy each day, chemotherapy tomorrow and blood transfusion Thursday were a daunting prospect.
I feel as if the treatment has given me a good old-fashioned battering recently (quite appropriate for a fish, I suppose) and not just on a physical level. Just entering the main foyer of the Marsden triggers nausea from the distinctive disinfected smell. Every time I go in I immediately visualise a intravenous bag of chemo. Then there is is the progressive eating dysfunction.
It is times like these where it is obvious that you have come to a crossroads and you have to raise your game mentally and stay strong. By that I don't mean just attempting to "barrel through" but to remind yourself that no matter how difficult the situation becomes it is the "holy grail" of a clean bill of health that it is important. There is no point in thinking about it when it is too later, rather it is better to create a positive framework in which the treatment can get full sight of the illness and target it. This means attempting to calm irrational fears and mental triggers such as that described about the Marsden foyer
In some ways this is easier said than done, but then there are events.
Events are always fast moving and today's clinic pre-chemotherapy was no exception.
Last week I was advised that my platelet count was falling and would be monitored. Platelets are responsible for clotting the blood and insufficient levels can lead to bleeding problems. Today I was told that they had fallen below acceptable levels (42 actual vs 100 advised), so I will be finishing today and tomorrow's chemotherapy tablets but will then wait a week before being reviewed. It is anticipated that the chemotherapy, both intravenous and tablet, will begin again next Tuesday.
The most significant issue is assuring the continuance of the radiotherapy and the doctors are happy to delay the intravenous chemotherapy so long as it is administered during the radiotherapy course i.e. the next three weeks. However, it is important that I restart the tablets as soon as possible as they work well with the radiotherapy.
My haemoglobin levels have fallen further to 10.4 from 11, which means that I am considerably anaemic though nothing like my initial levels. Still, I am well below the level of 12 required for best results of the radiotherapy.
The combination of these factors i.e. eating difficulties, platelets and haemoglobin explain why I have being feeling listless, so I can just focus on Thursday's transfusion which should make be feel much better. I might need a good book as I am up for six hours of it. All in all the changes from the expected are keeping me on a steady pathway (hence the title).
I will be digging deep from here. There is only three weeks of treatment left, plus the run-off from the radiotherapy and chemotherapy so I am determined to make it work no matter how uncomfortable. It is as clear as daylight now that this effort includes large doses of rest.
Thank goodness for the home entertainment facilities, he says whilst nudging up the volume on the surround sound system! What a great investment they were, eh Kitten?
All this probably sound like I have spent most of my day on my back but I've manage three hours at the hospital, three working and a couple taking Huffty to football (though the latter really is sitting on my backside and chatting). Perhaps too busy for a quiet day right now.
Monday 16 August 2010
Things Feel Brighter
I am happy to say that things feel a lot brighter this evening. The Canadian osteopath has given me a lift after the physical stress of the weekend and in return I am ceasing to refer to him as the "Mad Canadian". On more than one occasion he has queried why I use the term, as he considers himself to be very grounded. That is reason enough to persist, but as he is doing a good job for me I will be "nice". I conjured the term as an expression of his diversity and also because the term "Mad Canadian" seems to be an oxymoron.
Thanks to him anyway in helping to get me back on track.
Being in good physical and mental shape is of importance when tackling the agenda of the next three days, which will probably be the toughest of my whole treatment program.
Once again there is a real convergence and I am no longer just able to "barrel" my way through. I will be as focused as usual but the itinerary will be more difficult for me to handle with reduced physical capability.
Although I do look a bit pallid at the moment though not outright anaemic but my energy levels still leave plenty to be desired, but that isn't surprising.
I haven't done any Chi-Kung for the last days and this has been a stabilising force for me so I will be off into the back garden as soon as I finish scribing this. I really will look like a nutter standing there still in the pitch dark with my shaved head. Perhaps I should sell card board cut-outs of the image for people to place in their gardens at night? It would keep both the burglars and the foxes away.
Thanks to him anyway in helping to get me back on track.
Being in good physical and mental shape is of importance when tackling the agenda of the next three days, which will probably be the toughest of my whole treatment program.
Once again there is a real convergence and I am no longer just able to "barrel" my way through. I will be as focused as usual but the itinerary will be more difficult for me to handle with reduced physical capability.
Although I do look a bit pallid at the moment though not outright anaemic but my energy levels still leave plenty to be desired, but that isn't surprising.
I haven't done any Chi-Kung for the last days and this has been a stabilising force for me so I will be off into the back garden as soon as I finish scribing this. I really will look like a nutter standing there still in the pitch dark with my shaved head. Perhaps I should sell card board cut-outs of the image for people to place in their gardens at night? It would keep both the burglars and the foxes away.
Needs must (When the Devil Rides)
"Needs must" is a well worn English idiom, but few use the full expression "Needs must when the devil rides".
To me its meaning is very simple i.e. when you don't have control over things you just do what you have to. That explains a change in attitude to blood transfusions on my part.
I have never objected on any kind of logical premise but now that my energy levels are "on the floor" I will look at the receipt of someone elses blood on my birthday as a gift which is, of course, what it actually is.
I've been for a gentle but lengthy treatment with the Mad Canadian osteopath this morning using cranial techniques to work on my energy levels as well as some manipulation to sort out the battering that my back took on Saturday night. left the treatment feeling that my back was in a much better state and with an lighter feeling about me. The heaviness of the last few days had taken their toll a little
I have popped into work for the morning, as it is around the corner but have fiinished for the day and will be leaving shortly. I will be taking the rest of the day easily and continuing the attempt to build my energy levels back up.
Yesterday's trip to Notoplip and Sushi's was a suitably relaxed affair and I was given plenty of space to chill out. I was able tuck into a "roast" dinner (without the roasties) but with the meat an veg reduced. All very nice and a happy birthday from everyone. Although I felt like I had as much energy as a damp dish cloth there was the usual laughter and banter that surrounds us whenever we get together and that is great for the spirit.
There is the usual radiotherapy appointment today at 4:00pm but there begins a battery of appointments from tomorrow.
To me its meaning is very simple i.e. when you don't have control over things you just do what you have to. That explains a change in attitude to blood transfusions on my part.
I have never objected on any kind of logical premise but now that my energy levels are "on the floor" I will look at the receipt of someone elses blood on my birthday as a gift which is, of course, what it actually is.
I've been for a gentle but lengthy treatment with the Mad Canadian osteopath this morning using cranial techniques to work on my energy levels as well as some manipulation to sort out the battering that my back took on Saturday night. left the treatment feeling that my back was in a much better state and with an lighter feeling about me. The heaviness of the last few days had taken their toll a little
I have popped into work for the morning, as it is around the corner but have fiinished for the day and will be leaving shortly. I will be taking the rest of the day easily and continuing the attempt to build my energy levels back up.
Yesterday's trip to Notoplip and Sushi's was a suitably relaxed affair and I was given plenty of space to chill out. I was able tuck into a "roast" dinner (without the roasties) but with the meat an veg reduced. All very nice and a happy birthday from everyone. Although I felt like I had as much energy as a damp dish cloth there was the usual laughter and banter that surrounds us whenever we get together and that is great for the spirit.
There is the usual radiotherapy appointment today at 4:00pm but there begins a battery of appointments from tomorrow.
Sunday 15 August 2010
It's not all Doom and Gloom
What I have been writing about over the last few have been unpalatable but significant events which accurately represent my recent treatment induced decline. I very much doubt if the tone of the blog will change over the next week due to the amount of treatment coming my way, but there are more joyous occasions on horizon.
Whilst I tend to focus on each day as it comes there is a significant date in a couple of weeks as the first of my female cousins on my mother's side is going to have a baby. Roxy, as she is known on here, is not only my cousin (my mother's sister's daughter) but she is also my goddaughter. I wish her well over this last period of pregnancy and I can't wait to see the baby. A special mention also to Crazy Cuz who is Gandalf's daughter (Gandalf being my mother's brother). I believe that Crazy Cuz is due in October.
The kids will be going to North Wales to the "Outlaws" at the end of the week where they are sure to have a good time. They will be staying for a week and Kitten will be driving them up there but will be returning the following day. Cymraes will be coming to see us for the weekend, starting on Thursday.
Treatments will mean that I will have to kick back though I will be in work tomorrow but will be sure to be taking things easier.
Whilst I tend to focus on each day as it comes there is a significant date in a couple of weeks as the first of my female cousins on my mother's side is going to have a baby. Roxy, as she is known on here, is not only my cousin (my mother's sister's daughter) but she is also my goddaughter. I wish her well over this last period of pregnancy and I can't wait to see the baby. A special mention also to Crazy Cuz who is Gandalf's daughter (Gandalf being my mother's brother). I believe that Crazy Cuz is due in October.
The kids will be going to North Wales to the "Outlaws" at the end of the week where they are sure to have a good time. They will be staying for a week and Kitten will be driving them up there but will be returning the following day. Cymraes will be coming to see us for the weekend, starting on Thursday.
Treatments will mean that I will have to kick back though I will be in work tomorrow but will be sure to be taking things easier.
Oh What a Night!
Birthday celebrations today will be low key due to a bit of a torrid night last night.
Up until now I have still been able to get my chemotherapy tablets down. Not any more!
I had three hours of utter agony last night, which I will spare the details. Suffice to say that I said to to Kitten this morning that the pain must have been close to child birth. She was quick with the response when she said "I think so, because you certainly made more noise than I did. It is a good job we have to do the giving birth".
A fair point but perhaps an indication of the level of pain I was in.
I have persisted with taking the tablets whole until now because that is how they work best but, as of this morning, I am dissolving them for which there are lengthy instructions from the hospital.
So we have a tired Swordfish and Kitten but still in one piece and looking forward to a good but simple day.
It is a good job that I am seeing the Mad Canadian again tomorrow because the contractions that he tumour was giving courtesy of stuck tablets were having the antagonistic effect on my back and it was going into spasm from top to bottom.
That said I feel surprisingly OK today and in some ways Kitten got the worse end of the deal as, having dealt with me Huffty then persisted in waking up through the night.
Up until now I have still been able to get my chemotherapy tablets down. Not any more!
I had three hours of utter agony last night, which I will spare the details. Suffice to say that I said to to Kitten this morning that the pain must have been close to child birth. She was quick with the response when she said "I think so, because you certainly made more noise than I did. It is a good job we have to do the giving birth".
A fair point but perhaps an indication of the level of pain I was in.
I have persisted with taking the tablets whole until now because that is how they work best but, as of this morning, I am dissolving them for which there are lengthy instructions from the hospital.
So we have a tired Swordfish and Kitten but still in one piece and looking forward to a good but simple day.
It is a good job that I am seeing the Mad Canadian again tomorrow because the contractions that he tumour was giving courtesy of stuck tablets were having the antagonistic effect on my back and it was going into spasm from top to bottom.
That said I feel surprisingly OK today and in some ways Kitten got the worse end of the deal as, having dealt with me Huffty then persisted in waking up through the night.
Saturday 14 August 2010
A Day of Rest
After taking Huffty to football this morning where I stood and sat down (hardly challenging but nevertheless tiring for me today), I have done nothing but lie on the settee, watch television and snooze.
To be honest it is long overdue even if I don't feel any better for it.
I'm continuing my treatment with the Mad Canadian on Monday and I will be making every effort to keep this little body charged.
Kitten and I are getting to grips with the diet side of things, which is not particularly inspiring but still capable of variety. The secret is to try and get as many "good calories" in with as little intake. Undoubtedly, I will be using supplement drinks going forward and I have some of my own tricks up my sleeve. When I used to do heavier weight training I used to make my own supplement drink from egg whites, skimmed milk powder, water and chopped up banana. It was a supplement between meals, full of protein and carbohydrate but not to overdone of the fatty side. It also benefited from added vitamins and minerals in the skimmed milk powder.
At the moment I am sitting down to some soup, to which Kitten has added minced garlic chicken. She has had a food processor as a gift from her parents for the last two years and it is the first time she has used it. I get the feeling that it may be coming in for some heavy usage in the near term!
Meanwhile this resting malarkey can be taxing. How much footie, old episodes of Top Gear and current episodes of Red Bull X-Fighters can a Swordfish watch?
To be honest it is long overdue even if I don't feel any better for it.
I'm continuing my treatment with the Mad Canadian on Monday and I will be making every effort to keep this little body charged.
Kitten and I are getting to grips with the diet side of things, which is not particularly inspiring but still capable of variety. The secret is to try and get as many "good calories" in with as little intake. Undoubtedly, I will be using supplement drinks going forward and I have some of my own tricks up my sleeve. When I used to do heavier weight training I used to make my own supplement drink from egg whites, skimmed milk powder, water and chopped up banana. It was a supplement between meals, full of protein and carbohydrate but not to overdone of the fatty side. It also benefited from added vitamins and minerals in the skimmed milk powder.
At the moment I am sitting down to some soup, to which Kitten has added minced garlic chicken. She has had a food processor as a gift from her parents for the last two years and it is the first time she has used it. I get the feeling that it may be coming in for some heavy usage in the near term!
Meanwhile this resting malarkey can be taxing. How much footie, old episodes of Top Gear and current episodes of Red Bull X-Fighters can a Swordfish watch?
Light and Shade
It is obvious from the tone of the blog this week that this period has been difficult.
There can be no surprises here being deep into the fifth cycle of chemotherapy and two and a half weeks into some heavy duty radiotherapy.
The radiotherapy was always likely to affect my physical condition, especially when in conjunction with chemotherapy, but I am a little surprised by how quickly it has impacted.
Eating is not only difficult now but it is painful too. There is nothing that I can eat or drink in comfort. There is constant pain in my chest and back and in any swallowing action in the oesophagus. This pain is at perfectly tolerable level though.
Yesterday was a bad day because whilst at work I got into trouble just trying to swallow half a painkiller, so it is a good job that I had covered this base at my clinic appointment on Thursday. Whilst I spent yesterday morning from 10 until 1 in a lot of discomfort I was at least able to pick up some heavy duty soluble painkillers yesterday afternoon.
At this stage I don't want to take painkillers regularly. I would rather do what I said that I was going to do and rest more and just take painkillers when necessary. I can be my own worst enemy and have just put in another sizeable shift this week at work, but now even I recognise that it is time reign things in.
Whilst the week has been difficult, it has been so due most probably to the treatment, so there is no cause for concern. Whilst I breezed though the first 3 cycles of chemotherapy on my way to a supposed operation date in July this is now much tougher but the spirits are still raised even though the energy levels may not be, courtesy of the anaemia and the effects of the programme.
Tomorrow we will have a gentle celebration of my forthcoming 45th bithday, so that should be good fun for the family and we expect to be joined by the Notoplip clan. We are yet to finalise arrangements but, if the weather is good, I fancy something simple like a boat trip down the Thames and a walk down the riverside or some time in Richmond park having a stroll and a picnic. We will see what the consensus is.
I have taken Huffty to football this morning whereas Kitten has taken Boogle ice-skating as I didn't feel up to it but even standing for a couple of hours has left me a little drained. It's time to pull the "man flu" mindset and get some service around here :-)
I'll probably get "lumped" for that last comment as Kitten looks after me well. I still haven't put a duvet cover on!
There can be no surprises here being deep into the fifth cycle of chemotherapy and two and a half weeks into some heavy duty radiotherapy.
The radiotherapy was always likely to affect my physical condition, especially when in conjunction with chemotherapy, but I am a little surprised by how quickly it has impacted.
Eating is not only difficult now but it is painful too. There is nothing that I can eat or drink in comfort. There is constant pain in my chest and back and in any swallowing action in the oesophagus. This pain is at perfectly tolerable level though.
Yesterday was a bad day because whilst at work I got into trouble just trying to swallow half a painkiller, so it is a good job that I had covered this base at my clinic appointment on Thursday. Whilst I spent yesterday morning from 10 until 1 in a lot of discomfort I was at least able to pick up some heavy duty soluble painkillers yesterday afternoon.
At this stage I don't want to take painkillers regularly. I would rather do what I said that I was going to do and rest more and just take painkillers when necessary. I can be my own worst enemy and have just put in another sizeable shift this week at work, but now even I recognise that it is time reign things in.
Whilst the week has been difficult, it has been so due most probably to the treatment, so there is no cause for concern. Whilst I breezed though the first 3 cycles of chemotherapy on my way to a supposed operation date in July this is now much tougher but the spirits are still raised even though the energy levels may not be, courtesy of the anaemia and the effects of the programme.
Tomorrow we will have a gentle celebration of my forthcoming 45th bithday, so that should be good fun for the family and we expect to be joined by the Notoplip clan. We are yet to finalise arrangements but, if the weather is good, I fancy something simple like a boat trip down the Thames and a walk down the riverside or some time in Richmond park having a stroll and a picnic. We will see what the consensus is.
I have taken Huffty to football this morning whereas Kitten has taken Boogle ice-skating as I didn't feel up to it but even standing for a couple of hours has left me a little drained. It's time to pull the "man flu" mindset and get some service around here :-)
I'll probably get "lumped" for that last comment as Kitten looks after me well. I still haven't put a duvet cover on!
Friday 13 August 2010
Humble Pie
Continuing on the theme of emotional issues, on reflection, I have had a lot to deal with this week.
The onset of some serious pain on Monday and Tuesday night was not something that I particularly want to occur on a regular basis though thankfully I retired last night both without pain and without taking pain killers.
On a more relevant note the major event this week is the realisation that I cannot eat "properly" anymore. Kitten has stocked up on some easy to eat foodstuffs - yesterday I sat down to very small pasta shells in a heavy carbonara sauce, which was manageable. The downside is that it is not just a matter of restriction but that eating or drinking anything is now quite a painful experience, due to the side effects of the radiotherapy.
I can cope with that but I don't like my children to see me wincing with pain when I am eating. It is now obvious to them that I am struggling at meal times and they are used to a father who takes the lead at the dinner table, always eating his food and usually the first to finish (though I don't hold the latter as a merit).
These are things that we will have to adjust to as a family but I don't think that any father relishes the prospect of showing signs of weakness to his children.
On a brighter note, humility has been a theme that has popped up a few times on my blog and I guess that I no longer need to be hostage to it. What do I base this on? Well in the early 90's Big G and I went to watch Ireland vs Wales in Dublin. At the time both teams were poor and they were playing to avoid the "wooden spoon". We were staying with Big G's parents and I arrogantly proclaimed that we would beat the Irish comfortably. I was wrong.
When I got home Big G's dad served me a whole pie, which he described as a "humble pie" and it was served with a big wooden spoon to eat it with. Even though I was uncomfortable with Wales' loss I was still very appreciative of the humour and was happy to take my medicine.
If anyone was to pull the same stunt now though, I would simply shrug my shoulders, lift my eyebrow and say
"Sorry, but I can't eat it".
The onset of some serious pain on Monday and Tuesday night was not something that I particularly want to occur on a regular basis though thankfully I retired last night both without pain and without taking pain killers.
On a more relevant note the major event this week is the realisation that I cannot eat "properly" anymore. Kitten has stocked up on some easy to eat foodstuffs - yesterday I sat down to very small pasta shells in a heavy carbonara sauce, which was manageable. The downside is that it is not just a matter of restriction but that eating or drinking anything is now quite a painful experience, due to the side effects of the radiotherapy.
I can cope with that but I don't like my children to see me wincing with pain when I am eating. It is now obvious to them that I am struggling at meal times and they are used to a father who takes the lead at the dinner table, always eating his food and usually the first to finish (though I don't hold the latter as a merit).
These are things that we will have to adjust to as a family but I don't think that any father relishes the prospect of showing signs of weakness to his children.
On a brighter note, humility has been a theme that has popped up a few times on my blog and I guess that I no longer need to be hostage to it. What do I base this on? Well in the early 90's Big G and I went to watch Ireland vs Wales in Dublin. At the time both teams were poor and they were playing to avoid the "wooden spoon". We were staying with Big G's parents and I arrogantly proclaimed that we would beat the Irish comfortably. I was wrong.
When I got home Big G's dad served me a whole pie, which he described as a "humble pie" and it was served with a big wooden spoon to eat it with. Even though I was uncomfortable with Wales' loss I was still very appreciative of the humour and was happy to take my medicine.
If anyone was to pull the same stunt now though, I would simply shrug my shoulders, lift my eyebrow and say
"Sorry, but I can't eat it".
Thursday 12 August 2010
Update - Both Exoteric and Esoteric
This instalment covers a spectrum from Mad Canadians to blood transfusions.
Yesterday, I got the results of my latest blood tests and the trend of my haemoglobin levels has continued downwards.
Now that I am considerably below the preferable minimum for radiotherapy (actual 11 vs minimum 12) there is no alternative but to having a blood transfusion.
I cannot put forward a logical argument for not having one but, on an emotional level I just don't like the idea. Nevertheless it is the bigger picture that is important.
Given that I am not particularly happy about it the timing of the transfusion is impeccable. It will take place on my birthday next week, one day after my latest session of intravenous chemotherapy. They really know how to pile it on considering that I also had chemotherapy on my daughter's birthday but, as usual, I will shrug my shoulders and walk though it. Perhaps of greater concern is waiting that long for the transfusion with the count being low. The Marsden are looking to see if they can get an earlier appointment for me.
Given the load that is coming my way around my birthday I will be looking to celebrate quietly on Sunday to ensure that the day is free from hospital appointments and full of happiness.
So that leaves Mad Canadians. I had the pleasure of being treated by said man on what I envisage as a course of treatment. The Mad Canadian is fresh back from his family holidays in his motherland and he has embraced the wide open spaces and nature of the place. Looking suitably rejuvenated I am certainly hoping that he can pass some of that on to me.
At this stage my body is being hammered by the treatments and I feel that it is important to keep myself as vital as possible in a physical, mental and an emotional sense. My family and friend and I all help in this respect but it is also good to have assistance with someone where there is an easy rapport and where there is a variety of skill sets on hand.
The gloves are off and apart from giving my back a thorough and testy manipulation there was some digging deeper between the banter.
I feel that I am fairly adept at keeping myself on an even keel and I have a go forward approach that doesn't allow me to dwell on what is happening too much. There are, of course, moments and passages of play when I feel the gravity of what is happening. Moments can be simple things like closely shared times with the children. Those give me an instant window in what I will lose if things go "pear-shaped" on me. Then there are phases such as when I didn't know whether treatment would remain on a curative platform. These create which insecurity which is not self-induced simply because there are a number of directions that the experience could pull in, without an input or control from me.
Of course there are emotional currents that underpin these. Whilst I don't analyse or dwell on this it is obvious to the observer that they will eventually "pop out". A good example would be the back. Other than by accidental injury I have only had three occasions when my back has "gone"
The very fact that I am writing about this probably articulates that I consider these things more that most men do but it is difficult to know how to digger deeper into them more than I already do. This is what the Mad Canadian and I discussed for a while i.e. not holding onto the emotional issues which an illness like this causes.
When I am pumped full of steroids at the beginning of chemotherapy cycles I have moments when I feel outright anger but there must be a control of that because released unchecked it can be very destructive, as most know.
So I am considering channels to tap in deeper and an obvious for me is to dust down the decks and get mixing music once more. There is a connection when working with music that requires a concentration and a dynamism that is based on what you feel rather than what you think. Performance magnifies this due to the pressure that you work under, but simply exploring this therapeutic channel may pay dividends.
Then there is the poetry, which I haven't really explored for years. It accesses a deeper and more philosophical element of my thought process; slightly deeper than rugby, football, food, sex and beer, anyway.
It is difficult for me to talk about how I feel because there are only moments when the gravity of my situation stares me in the face and there is an acceptance from me that I can only do my best. So, in all honesty I do not really feel a lot, at least not on a superficial day to day level. Clearly, I am open about what is happening to me but I always believe in taking advice when it resonates with me.
With all this in mind I will be trying to find ways of engaging on a more emotional than logical level, but there is little chance of me dwelling too much, I would rather search for moments of happiness that I can share with those close to me. They are a great release in themself.
Yesterday, I got the results of my latest blood tests and the trend of my haemoglobin levels has continued downwards.
Now that I am considerably below the preferable minimum for radiotherapy (actual 11 vs minimum 12) there is no alternative but to having a blood transfusion.
I cannot put forward a logical argument for not having one but, on an emotional level I just don't like the idea. Nevertheless it is the bigger picture that is important.
Given that I am not particularly happy about it the timing of the transfusion is impeccable. It will take place on my birthday next week, one day after my latest session of intravenous chemotherapy. They really know how to pile it on considering that I also had chemotherapy on my daughter's birthday but, as usual, I will shrug my shoulders and walk though it. Perhaps of greater concern is waiting that long for the transfusion with the count being low. The Marsden are looking to see if they can get an earlier appointment for me.
Given the load that is coming my way around my birthday I will be looking to celebrate quietly on Sunday to ensure that the day is free from hospital appointments and full of happiness.
So that leaves Mad Canadians. I had the pleasure of being treated by said man on what I envisage as a course of treatment. The Mad Canadian is fresh back from his family holidays in his motherland and he has embraced the wide open spaces and nature of the place. Looking suitably rejuvenated I am certainly hoping that he can pass some of that on to me.
At this stage my body is being hammered by the treatments and I feel that it is important to keep myself as vital as possible in a physical, mental and an emotional sense. My family and friend and I all help in this respect but it is also good to have assistance with someone where there is an easy rapport and where there is a variety of skill sets on hand.
The gloves are off and apart from giving my back a thorough and testy manipulation there was some digging deeper between the banter.
I feel that I am fairly adept at keeping myself on an even keel and I have a go forward approach that doesn't allow me to dwell on what is happening too much. There are, of course, moments and passages of play when I feel the gravity of what is happening. Moments can be simple things like closely shared times with the children. Those give me an instant window in what I will lose if things go "pear-shaped" on me. Then there are phases such as when I didn't know whether treatment would remain on a curative platform. These create which insecurity which is not self-induced simply because there are a number of directions that the experience could pull in, without an input or control from me.
Of course there are emotional currents that underpin these. Whilst I don't analyse or dwell on this it is obvious to the observer that they will eventually "pop out". A good example would be the back. Other than by accidental injury I have only had three occasions when my back has "gone"
- The first was on a day when an ex-partner came pick up the rest of her stuff from my place on the same day as my parents moved back to Wales for good
- The second was near the beginning of this current process
- The third was a couple of weeks ago on that day of madness where the projected treatment was all over the place but ended up being my first day of radiotherapy and a new cycle if chemotherapy
The very fact that I am writing about this probably articulates that I consider these things more that most men do but it is difficult to know how to digger deeper into them more than I already do. This is what the Mad Canadian and I discussed for a while i.e. not holding onto the emotional issues which an illness like this causes.
When I am pumped full of steroids at the beginning of chemotherapy cycles I have moments when I feel outright anger but there must be a control of that because released unchecked it can be very destructive, as most know.
So I am considering channels to tap in deeper and an obvious for me is to dust down the decks and get mixing music once more. There is a connection when working with music that requires a concentration and a dynamism that is based on what you feel rather than what you think. Performance magnifies this due to the pressure that you work under, but simply exploring this therapeutic channel may pay dividends.
Then there is the poetry, which I haven't really explored for years. It accesses a deeper and more philosophical element of my thought process; slightly deeper than rugby, football, food, sex and beer, anyway.
It is difficult for me to talk about how I feel because there are only moments when the gravity of my situation stares me in the face and there is an acceptance from me that I can only do my best. So, in all honesty I do not really feel a lot, at least not on a superficial day to day level. Clearly, I am open about what is happening to me but I always believe in taking advice when it resonates with me.
With all this in mind I will be trying to find ways of engaging on a more emotional than logical level, but there is little chance of me dwelling too much, I would rather search for moments of happiness that I can share with those close to me. They are a great release in themself.
Wednesday 11 August 2010
An Air of Stillness
Thankfully my approach last night of taking some pain killers before my chemotherapy tabets paid dividends in handsome fashion. There was no repeat performance of the previous two nights and I was able to get a good night's sleep. Most refreshing!
Also, last night I managed to drag myself from the sofa and get out in the garden and do the usual Chi-Kung practice. This was good both from a physical and mental perspective. Mentally, getting out there for thirty minutes and performing disciplined and routine exercise is a good way of helping me to rise out of the situation.
The rain was hammering down for most of yesterday and the time I chose to go out offered a pleasant surprise because there was a complete air of stillness about the night. There wasn't the slightest whiff of breeze an the whole landscape looked like a silhouette with the heavy cloud adding to the effect set against the vague remnants of light.
Such an atmosphere is soothing, relaxing and peaceful and is just what the doctor ordered.
Although different, the experience reminded me of a time when I watched Shakespeare's A Midsummer Night's Dream in the open air of Regent's Park. There was a moment during the performance where Paula Wilcox (of Man about The House notoriety) was performing a soliloquy and I noticed a rustle of the trees before a complete blanket of stillness descended as if there was a transition from day to night. Like as if night had parachuted in.
Shortly after I wrote the following poem, which is written through the spirit of (the eyes of) the night and its descent.
Also, last night I managed to drag myself from the sofa and get out in the garden and do the usual Chi-Kung practice. This was good both from a physical and mental perspective. Mentally, getting out there for thirty minutes and performing disciplined and routine exercise is a good way of helping me to rise out of the situation.
The rain was hammering down for most of yesterday and the time I chose to go out offered a pleasant surprise because there was a complete air of stillness about the night. There wasn't the slightest whiff of breeze an the whole landscape looked like a silhouette with the heavy cloud adding to the effect set against the vague remnants of light.
Such an atmosphere is soothing, relaxing and peaceful and is just what the doctor ordered.
Although different, the experience reminded me of a time when I watched Shakespeare's A Midsummer Night's Dream in the open air of Regent's Park. There was a moment during the performance where Paula Wilcox (of Man about The House notoriety) was performing a soliloquy and I noticed a rustle of the trees before a complete blanket of stillness descended as if there was a transition from day to night. Like as if night had parachuted in.
Shortly after I wrote the following poem, which is written through the spirit of (the eyes of) the night and its descent.
Tuesday 10 August 2010
Pro-Active Pain Management
Apart from generally easing back I am going to take some other measures before I see a consultant on Thursday.
I am quite capable of absorbing some pain but what I have had to take on board the last couple of nights was no fun.
I am not one to reach for the pain-killers unnecessarily, I have a simple logic that says that the less you use them the more effective they will be.
In these circumstances I am inclined to make an exception and I will take some pain killers in advance of taking my daily chemotherapy tablets. The radiographers seemed to think that the pain is likely to be caused by these tablets in conjunction with the radiotherapy.
Otherwise, "it's all quiet on the Western Front". I am going into work tomorrow at least until lunchtime and whilst I am up in town I have an appointment with the Mad Canadian osteopath who should be freshly invigorated by his trip to his homeland.
I am quite capable of absorbing some pain but what I have had to take on board the last couple of nights was no fun.
I am not one to reach for the pain-killers unnecessarily, I have a simple logic that says that the less you use them the more effective they will be.
In these circumstances I am inclined to make an exception and I will take some pain killers in advance of taking my daily chemotherapy tablets. The radiographers seemed to think that the pain is likely to be caused by these tablets in conjunction with the radiotherapy.
Otherwise, "it's all quiet on the Western Front". I am going into work tomorrow at least until lunchtime and whilst I am up in town I have an appointment with the Mad Canadian osteopath who should be freshly invigorated by his trip to his homeland.
There's Many A True Word Spoken in Jest
One of mine and Notoplip's jokes is rather crude. The image is that at some point the cancer will have me on my hands and knees bleeding out of a particular orifice!
Not a pleasant image and up until recent events I have got away remarkably lightly. However, I found myself reduced to my hands and knees for the second night on the trot, though thankfully spared the other element.
In some ways it is a relief that something is actually happening. Of course, it is better to think that what I have is movement, disturbance effected by the treatment rather than anything more sinister.
The dragon has awoken and it is rather pissed off that its cave is flooded with chemotherapy drugs and it is being subjected to a radiotherapy disco light show.
Dance dragon dance, because life isn't going to get any easier for you.
That said I don't think that it it is going to get any easier for me in the medium term, but as I have always said, I don't care if the end result is right. It not much fun when swallowing the pain killers intensifies the pain further, but eventually they do their job enough for me to get to sleep.
There's a sense that suffering is an integral part of the journey, but it is something I have recently planned for both at home and at work. It has just all come at once.
Definitely time to ease back.
Not a pleasant image and up until recent events I have got away remarkably lightly. However, I found myself reduced to my hands and knees for the second night on the trot, though thankfully spared the other element.
In some ways it is a relief that something is actually happening. Of course, it is better to think that what I have is movement, disturbance effected by the treatment rather than anything more sinister.
The dragon has awoken and it is rather pissed off that its cave is flooded with chemotherapy drugs and it is being subjected to a radiotherapy disco light show.
Dance dragon dance, because life isn't going to get any easier for you.
That said I don't think that it it is going to get any easier for me in the medium term, but as I have always said, I don't care if the end result is right. It not much fun when swallowing the pain killers intensifies the pain further, but eventually they do their job enough for me to get to sleep.
There's a sense that suffering is an integral part of the journey, but it is something I have recently planned for both at home and at work. It has just all come at once.
Definitely time to ease back.
Monday 9 August 2010
Tricky, Tricky, Tricky
A happy birthday to my sister "Tricky Crow". Apart from being my sister of some two years and ten days longer standing than me, she is my only other close relative living in England.
Kitten has just come back from Tricky Crow and Dumbledore's having dropped off a bottle of wine and a card. This is something that I had planned to do myself but I am afraid that I have been hit by the proverbial "lump hammer".
Not only was I up in the early hours in severe pain but there was plenty more dished out today, though not to the same high quality standards. It has been rather more like I have just taken a good beating. I shall have to have a word with the pain committee to see why they eased off the gas.
Eating has become more difficult too. Tonight I just had rice and mince but it was painful to digest and that I think is definitely courtesy of the radiotherapy, so at least it is busily doing something!
I've also been very tired so I have spent a good part of the evening snoozing.
There seems to be a pattern of a lot of things coming together once again repeating itself, which I have said is not unusual for me. The previous blog entry about overdoing it a little will no doubt have played its only part in the process. I will just continue to rest and see where we head tomorrow.
Moan over :-)
Kitten has just come back from Tricky Crow and Dumbledore's having dropped off a bottle of wine and a card. This is something that I had planned to do myself but I am afraid that I have been hit by the proverbial "lump hammer".
Not only was I up in the early hours in severe pain but there was plenty more dished out today, though not to the same high quality standards. It has been rather more like I have just taken a good beating. I shall have to have a word with the pain committee to see why they eased off the gas.
Eating has become more difficult too. Tonight I just had rice and mince but it was painful to digest and that I think is definitely courtesy of the radiotherapy, so at least it is busily doing something!
I've also been very tired so I have spent a good part of the evening snoozing.
There seems to be a pattern of a lot of things coming together once again repeating itself, which I have said is not unusual for me. The previous blog entry about overdoing it a little will no doubt have played its only part in the process. I will just continue to rest and see where we head tomorrow.
Moan over :-)
Overdoing it Just a Little
I had a pretty full week last week and it came back to haunt me just a little.
Yesterday morning I got up feeling OK, but not having slept that well. Just as we were ready to leave for the football at Wembley I started to feel tired an a little drained.
In normal circumstances I would have looked after myself and taken myself off for a rest, but when you have a six year old son ready for his first trip to see his favourite team at Wembley that course of action is not something that really comes on the radar.
The journey up to Wembley is not testing and we got there in plenty of time, it is the coming back that gets a little tricky with 85,000 leaving the stadium. We did our best to avoid the mayhem by hanging back a little.
So a defeat for Chelsea, but we had primed the boys to recognise that this was not the most important of matches and that it was the day out and the chance to see football at Wembley that was the main issue.
We had a great day out with Notoplip and his son Sonic, but I paid for it in the night.
I have not had too much trouble with pain from the cancer, but I do know that when I don't pull back on the warning signs of tiredness that it is ready for me. It's a bit like the Greek myth as articulated in Clash of the Titans and the cry of "Release the Kraken" as Hades (god of the underworld) releases his beast.
If only I had Medusa's head to turn this thing to stone.
Suffice to say that when the Kraken is released the pain is pretty devastating. The funny thing is that I am now findign it difficult to swallow my tablets which are all rather large. So it is quite comical that there I am doubled up but at the same time psyching myself up to endure worse pain caused by trying to get the pain killers down in the midst of the madness.
I can laugh because once the painkillers are in there I can get to sleep and that is a perfect remedy. Knowing that something is temporary makes it easy to deal with in the head. I hope that I don't lose that luxury.
So I am going to back off and take it easy today and relax in the knowledge that my son is quite a lucky little fella. He made it to Wales' Millennium stadium when he was four and again a year later. He has now been to England's stadium too.
Yesterday morning I got up feeling OK, but not having slept that well. Just as we were ready to leave for the football at Wembley I started to feel tired an a little drained.
In normal circumstances I would have looked after myself and taken myself off for a rest, but when you have a six year old son ready for his first trip to see his favourite team at Wembley that course of action is not something that really comes on the radar.
The journey up to Wembley is not testing and we got there in plenty of time, it is the coming back that gets a little tricky with 85,000 leaving the stadium. We did our best to avoid the mayhem by hanging back a little.
So a defeat for Chelsea, but we had primed the boys to recognise that this was not the most important of matches and that it was the day out and the chance to see football at Wembley that was the main issue.
We had a great day out with Notoplip and his son Sonic, but I paid for it in the night.
I have not had too much trouble with pain from the cancer, but I do know that when I don't pull back on the warning signs of tiredness that it is ready for me. It's a bit like the Greek myth as articulated in Clash of the Titans and the cry of "Release the Kraken" as Hades (god of the underworld) releases his beast.
If only I had Medusa's head to turn this thing to stone.
Suffice to say that when the Kraken is released the pain is pretty devastating. The funny thing is that I am now findign it difficult to swallow my tablets which are all rather large. So it is quite comical that there I am doubled up but at the same time psyching myself up to endure worse pain caused by trying to get the pain killers down in the midst of the madness.
I can laugh because once the painkillers are in there I can get to sleep and that is a perfect remedy. Knowing that something is temporary makes it easy to deal with in the head. I hope that I don't lose that luxury.
So I am going to back off and take it easy today and relax in the knowledge that my son is quite a lucky little fella. He made it to Wales' Millennium stadium when he was four and again a year later. He has now been to England's stadium too.
Sunday 8 August 2010
Normal Stuff
It would be easy to get a picture of me living a life of illness because it is the illness that is the purpose of this blog, but that simply isn't the case.
The treatment has been ramped up and a quick glance at the blog's appointment page for August will give an immediate impression.
Despite that I still put in a decent working week, being active everyday and making it into the office for parts of three of the five days. On the other days I was grateful for extra time that he omission of travel affords and was able to focus on the more technical aspects of what I do.
This weekend I took Boogle ice-skating whilst Kitten took Huffty to his football. I have got Boogle back into lessons, which she thoroughly enjoys and there is the added bonus that our normal ice rink, north of the river, is back open for business. I think I may need to step up my exercise regime a little as I was huffing and puffing in no time at all.
Yesterday we also all sat down as a family and watched a film encouraging chants of "Blu Ray, Blu Ray" from Huffty and I as we get in the spirit for today. Although Kitten felt the addition of home cinema equipment to frivolous I think that she really enjoys it when we all sit down for a film.
The kids are out this morning with Kitten at a play area but Huffy and I will be Wembley bound with Notoplip and Sonic at lunchtime. We are off to what is supposed to be the football season "curtain-raiser" Community Shield between Chelsea (Winners of the Premiership and FA Cup) against Manchester Utd (Premiership Runners-up).
This will be Huffty's first visit to Wembley though he has already been to Wales' Millennium Stadium for rugby internationals.
The treatment has been ramped up and a quick glance at the blog's appointment page for August will give an immediate impression.
Despite that I still put in a decent working week, being active everyday and making it into the office for parts of three of the five days. On the other days I was grateful for extra time that he omission of travel affords and was able to focus on the more technical aspects of what I do.
This weekend I took Boogle ice-skating whilst Kitten took Huffty to his football. I have got Boogle back into lessons, which she thoroughly enjoys and there is the added bonus that our normal ice rink, north of the river, is back open for business. I think I may need to step up my exercise regime a little as I was huffing and puffing in no time at all.
Yesterday we also all sat down as a family and watched a film encouraging chants of "Blu Ray, Blu Ray" from Huffty and I as we get in the spirit for today. Although Kitten felt the addition of home cinema equipment to frivolous I think that she really enjoys it when we all sit down for a film.
The kids are out this morning with Kitten at a play area but Huffy and I will be Wembley bound with Notoplip and Sonic at lunchtime. We are off to what is supposed to be the football season "curtain-raiser" Community Shield between Chelsea (Winners of the Premiership and FA Cup) against Manchester Utd (Premiership Runners-up).
This will be Huffty's first visit to Wembley though he has already been to Wales' Millennium Stadium for rugby internationals.
Saturday 7 August 2010
Modifying the Diet - Simple Stuff and Nutty Roasts
As I said, I have been having trouble getting my food down.
Whilst I am now having trouble with even simple food stuffs it should also be acknowledged that I have not really compromised my general habits.
The writing has been on the wall for this approach over the last week as I have been using fizzy drinks to aid the process. They seem to shift the food much easier than other liquids but are not really an answer because a diet of fizzy drinks is not a good diet.
The Marsden advised pureed food but, at this stage, that seems like a hammer to crack a nut.
So I am starting to give the process some thought and am enlisting the help of others too.
I am not a stranger to understanding foods as I read widely on the subject in my late teens and twenties when I was a gym regular. There is also a lot of dietary knowledge in the family due to the widely experienced coeliac issue and Cymraes' interest in healing arts. Kitten is also good on the subject.
I can make simple and immediate adjustments too.
Much of my diet revolves around poultry; chicken being a particular favourite. It is a simple but nutritious source of protein and is low and fat and goes well with lots of other components. It is, however, difficult to get down so it goes out and fish comes in.
I am not a great fish eater but eat the simple stuff like salmon, mackerel, haddock and cod and there is plenty of room for me to take on other sources.
Diary is, of course, an easy source of nutrition and also easy to digest.
There are many simple ways in which the diet can be rebalanced. One of the avenues open to me is the vegetarian route.
Before mother's and her brother Gandalf family had to resort to coeliac diets, which are very restrictive, they were vegetarians. My sister was also vegetarian for a number of years.
Whilst that provided a source of amusement to me, I was not dismissive of it. Rather, I used to enjoy the benefit of some of the better dishes. I had some particular favourites, one of which is nutritious, smash full of calories and easy to get down - at least I imagine it to be when cooked well because it is very moist.
Courtesy of Cymraes and because Big G expressed an interest I am putting the recipe up here, which might be considered an interesting departure from my normal "BS".
Kitten may be surprised if I start making myself handy around the kitchen and I am not entirely sure that she will be as pleased as she makes out. Watch this space
Here's is Cymraes' nut roast recipe (though I am not sure where she got it from) - For the record I often used to eat it at the same time that I ate a steak. That was when I was young and greedy. The liberal application of bread crumbs means that she cannot eat it anymore - awwwwwwwww
Nut roast recipe:
8oz ground cashew nuts or 1/2 walnuts
4oz fresh breadcrumbs
4oz finally chopped onion
1oz butter
1 clove of garlic
1/4 pint milk
1/2 teaspoon finely chopped herbs (thyme or oregano or marjoram)
Salt & black pepper
FILLING
4oz finely chopped onion
8oz of shredded red pepper
1oz butter
4oz grated Edam cheese
1 beaten egg
METHOD
Mix nuts & breadcrumbs
Fry onion in butter & add garlic & fry
Take out of pan, add to the nut & crumb mix
Beat egg with milk & herbs, salt & pepper
Pour into nut & crumb mix
FILLING
Fry onion & pepper in butter, season & remove from heat
Add cheese & enough beaten egg to bind (all stringy)
Put half nut mix into a greased 1lb loaf tin
Add layer of filling, spreading evenly
Add rest of nut mix & bake on about 180-200c electric for 30-40 minutes.
Test by using a knife
Whilst I am now having trouble with even simple food stuffs it should also be acknowledged that I have not really compromised my general habits.
The writing has been on the wall for this approach over the last week as I have been using fizzy drinks to aid the process. They seem to shift the food much easier than other liquids but are not really an answer because a diet of fizzy drinks is not a good diet.
The Marsden advised pureed food but, at this stage, that seems like a hammer to crack a nut.
So I am starting to give the process some thought and am enlisting the help of others too.
I am not a stranger to understanding foods as I read widely on the subject in my late teens and twenties when I was a gym regular. There is also a lot of dietary knowledge in the family due to the widely experienced coeliac issue and Cymraes' interest in healing arts. Kitten is also good on the subject.
I can make simple and immediate adjustments too.
Much of my diet revolves around poultry; chicken being a particular favourite. It is a simple but nutritious source of protein and is low and fat and goes well with lots of other components. It is, however, difficult to get down so it goes out and fish comes in.
I am not a great fish eater but eat the simple stuff like salmon, mackerel, haddock and cod and there is plenty of room for me to take on other sources.
Diary is, of course, an easy source of nutrition and also easy to digest.
There are many simple ways in which the diet can be rebalanced. One of the avenues open to me is the vegetarian route.
Before mother's and her brother Gandalf family had to resort to coeliac diets, which are very restrictive, they were vegetarians. My sister was also vegetarian for a number of years.
Whilst that provided a source of amusement to me, I was not dismissive of it. Rather, I used to enjoy the benefit of some of the better dishes. I had some particular favourites, one of which is nutritious, smash full of calories and easy to get down - at least I imagine it to be when cooked well because it is very moist.
Courtesy of Cymraes and because Big G expressed an interest I am putting the recipe up here, which might be considered an interesting departure from my normal "BS".
Kitten may be surprised if I start making myself handy around the kitchen and I am not entirely sure that she will be as pleased as she makes out. Watch this space
Here's is Cymraes' nut roast recipe (though I am not sure where she got it from) - For the record I often used to eat it at the same time that I ate a steak. That was when I was young and greedy. The liberal application of bread crumbs means that she cannot eat it anymore - awwwwwwwww
Nut roast recipe:
8oz ground cashew nuts or 1/2 walnuts
4oz fresh breadcrumbs
4oz finally chopped onion
1oz butter
1 clove of garlic
1/4 pint milk
1/2 teaspoon finely chopped herbs (thyme or oregano or marjoram)
Salt & black pepper
FILLING
4oz finely chopped onion
8oz of shredded red pepper
1oz butter
4oz grated Edam cheese
1 beaten egg
METHOD
Mix nuts & breadcrumbs
Fry onion in butter & add garlic & fry
Take out of pan, add to the nut & crumb mix
Beat egg with milk & herbs, salt & pepper
Pour into nut & crumb mix
FILLING
Fry onion & pepper in butter, season & remove from heat
Add cheese & enough beaten egg to bind (all stringy)
Put half nut mix into a greased 1lb loaf tin
Add layer of filling, spreading evenly
Add rest of nut mix & bake on about 180-200c electric for 30-40 minutes.
Test by using a knife
About the Journey
At very close to six months since official diagnosis and a further two or three months since I started to feel ill this period of my life can now be considered a journey in its own right.
It is important to realise that I accept the illness as part of my life rather than being some malicious external force that I am battling against. This perspective allows me to continue to enjoy life on a day by day basis rather than constantly wishing it away focusing on a day when I am better.
It is difficult to find a decent analogy to explain the journey but a good one may be as if I have found myself in a pot hole.
I am alone in the pot hole but I have communication with family, friends and underground experts. There is much advice, help and encouragement but nobody knows whether the pot hole actually leads back to the surface because this is the first time that it has been travelled. Furthermore, there are junctions at which the journey presents options in direction and nobody knows which direction is the best.
For all of the collective experience this is a unique journey and, once accepted that is where I am, it is a beautiful journey of self discovery every bit as much as walking in the Andes or sailing on the Amazon. There are times when I am on my belly inching forwards on my belly taking in mouthfuls of water but, equally, there are times when I arrive in huge multi-coloured caves of light and wonder, which have not been seen before. The key to my journey is that there has to be an acceptance that it may end in a dead end.
This is no different to life itself where there are no guarantees for everyone. I was chatting with Sam the Eagle over a drink a few nights ago and he said that when I am crossing a road he feels protective towards me, wanting to make sure that I don't get run over and ruin my chances of recovery. I mention this because it brings into focus that there is risk and danger for us all every day.
Sam the Eagle's mind set is a little different to Notoplip who says that he is going to wait for me on the day that I get the all clear. He is going to sit in a high powered car outside the hospital and just as I come out in jubilant fashion he is going to drive the car as fast as he can and flatten me!
I appreciate both points of view for what they are and it is up to me to enjoy the journey on the way.
Sam, I'll show you a picture of Notoplip so you can shoot him whilst he revs his engine. Don't kill him because I want to be able to share the joke with him whilst he is in hospital with all tubes sticking out of him. I will lean over and gently whisper in his ear, "don't worry mate. Everything will be OK"
It is important to realise that I accept the illness as part of my life rather than being some malicious external force that I am battling against. This perspective allows me to continue to enjoy life on a day by day basis rather than constantly wishing it away focusing on a day when I am better.
It is difficult to find a decent analogy to explain the journey but a good one may be as if I have found myself in a pot hole.
I am alone in the pot hole but I have communication with family, friends and underground experts. There is much advice, help and encouragement but nobody knows whether the pot hole actually leads back to the surface because this is the first time that it has been travelled. Furthermore, there are junctions at which the journey presents options in direction and nobody knows which direction is the best.
For all of the collective experience this is a unique journey and, once accepted that is where I am, it is a beautiful journey of self discovery every bit as much as walking in the Andes or sailing on the Amazon. There are times when I am on my belly inching forwards on my belly taking in mouthfuls of water but, equally, there are times when I arrive in huge multi-coloured caves of light and wonder, which have not been seen before. The key to my journey is that there has to be an acceptance that it may end in a dead end.
This is no different to life itself where there are no guarantees for everyone. I was chatting with Sam the Eagle over a drink a few nights ago and he said that when I am crossing a road he feels protective towards me, wanting to make sure that I don't get run over and ruin my chances of recovery. I mention this because it brings into focus that there is risk and danger for us all every day.
Sam the Eagle's mind set is a little different to Notoplip who says that he is going to wait for me on the day that I get the all clear. He is going to sit in a high powered car outside the hospital and just as I come out in jubilant fashion he is going to drive the car as fast as he can and flatten me!
I appreciate both points of view for what they are and it is up to me to enjoy the journey on the way.
Sam, I'll show you a picture of Notoplip so you can shoot him whilst he revs his engine. Don't kill him because I want to be able to share the joke with him whilst he is in hospital with all tubes sticking out of him. I will lean over and gently whisper in his ear, "don't worry mate. Everything will be OK"
Friday 6 August 2010
Darker Moments - Eating Deteriorates
Up until this week eating may not have been easy but neither has it been a chore.
There has been a marked deterioration over the last few days culminating in me finding it difficult to eat sliced bread that had been dipped in soup.
Hopefully there is room for some creativity before resorting to pureed food, but the decline has been quite startling.
What I do know is that I have been lucky up until now because many with my condition have this problem even with fluids all the way through ,whereas I am now close to six months after diagnosis.
What is perhaps more worrying is not knowing whether this has been brought on by the radiotherapy (in which case it is easy to live with) or whether it is simply the cancer progressing.
My overall health being good has made it much easier to navigate the last few months but such an obvious problem of not being able to digest simple foods is a stark reminder that my body is diseased and ultimately that is what cancer of the oesophagus is all about.
It's a bit like being squeezed by ethereal and sinister hands from the inside. I appreciate that isn't an image to enjoy over a bowl of cornflakes on the weekend but it tells a story.
I guess there may be a fight to be the first to the fridge for the smoothies from now on.
There has been a marked deterioration over the last few days culminating in me finding it difficult to eat sliced bread that had been dipped in soup.
Hopefully there is room for some creativity before resorting to pureed food, but the decline has been quite startling.
What I do know is that I have been lucky up until now because many with my condition have this problem even with fluids all the way through ,whereas I am now close to six months after diagnosis.
What is perhaps more worrying is not knowing whether this has been brought on by the radiotherapy (in which case it is easy to live with) or whether it is simply the cancer progressing.
My overall health being good has made it much easier to navigate the last few months but such an obvious problem of not being able to digest simple foods is a stark reminder that my body is diseased and ultimately that is what cancer of the oesophagus is all about.
It's a bit like being squeezed by ethereal and sinister hands from the inside. I appreciate that isn't an image to enjoy over a bowl of cornflakes on the weekend but it tells a story.
I guess there may be a fight to be the first to the fridge for the smoothies from now on.
Perspective Changes again
First off, a happy birthday to Lindylu. I hope that you have a good one.
Yesterday's conversation with the head of radiotherapy changed a lot of things.
The most important was realising that this isn't a sprint through therapy over the next five weeks, rather it is a gradual process until I am reassessed in seventeen weeks time.
It might seem odd that I didn't already know this but there is a gap between what information you are given, which questions you think of asking and what the facts are. I have accepted long ago that one has to be slightly relaxed and that the moment will present itself when information is ready to be taken on board. Following this blog for any period of time makes it obvious that you have to be adaptable in this situation as it constantly changes, whether through design or through perception.
The new time frame means that it is time for me to keep doing the things that I am doing well and improve on the others and be grateful that the process has longer to work.
Someone said to me today that it must be easier said than done to remain relaxed in these circumstances but the truth is that you become relaxed in any situation given time. The same can be said about the gambler in a casino. The first time that you gamble each bet is accompanied by an adrenaline rush and there is less cold logic but, as you become more proficient a cooler head takes over.
One of the things that I will be putting in place is some regular appointments with the Mad Canadian oesteopath. I have learned that he is not back until next week but when he returns I will use the diversity of his skills as an added tool in my healing box.
It interests me that many people seek out alternative therapies when the end of their journey with cancer has already been marked out, whereas I view complementary therapies as exactly that i.e. complementary to the mainstream approach. The Mad Canadian has a few of the more esoteric healing arts up his sleeve and they will complement not only my treatment but the other things that I am doing for myself.
Yesterday's conversation with the head of radiotherapy changed a lot of things.
The most important was realising that this isn't a sprint through therapy over the next five weeks, rather it is a gradual process until I am reassessed in seventeen weeks time.
It might seem odd that I didn't already know this but there is a gap between what information you are given, which questions you think of asking and what the facts are. I have accepted long ago that one has to be slightly relaxed and that the moment will present itself when information is ready to be taken on board. Following this blog for any period of time makes it obvious that you have to be adaptable in this situation as it constantly changes, whether through design or through perception.
The new time frame means that it is time for me to keep doing the things that I am doing well and improve on the others and be grateful that the process has longer to work.
Someone said to me today that it must be easier said than done to remain relaxed in these circumstances but the truth is that you become relaxed in any situation given time. The same can be said about the gambler in a casino. The first time that you gamble each bet is accompanied by an adrenaline rush and there is less cold logic but, as you become more proficient a cooler head takes over.
One of the things that I will be putting in place is some regular appointments with the Mad Canadian oesteopath. I have learned that he is not back until next week but when he returns I will use the diversity of his skills as an added tool in my healing box.
It interests me that many people seek out alternative therapies when the end of their journey with cancer has already been marked out, whereas I view complementary therapies as exactly that i.e. complementary to the mainstream approach. The Mad Canadian has a few of the more esoteric healing arts up his sleeve and they will complement not only my treatment but the other things that I am doing for myself.
Thursday 5 August 2010
Roots
I was born in South Wales and my roots were sown on a council estate between Cardiff and Bridgend.
The council estate was not the best (sorry Lindylu and Roxy) but neither was it in anyway bad by today's standards. Whatever it was I had a happy few years there in the days when you just went around to someone's house, opened the back door and shouted "It's me. Are you in?"
The streets on the town were and are largely named after trees. I lived in Oak Road and there is Sycamore Road, Birchgrove, Elm Road and Willow Road.
Well, I have definitely gone up the world because the Radiotherapy "suite" at the Marsden is also named after trees but I am in the Juniper suite. How posh is that! It's almost like I should be handed a scone with jam and cream upon exit. "That's you treatment finished for today, Swordfish and don't forget your scone. Single or double cream". Mmmmmmmmm.
Back in the real world the following video, plucked from You Tube captures the working class South Wales spirit, self-parody and also the ability to prick the pompous. Aside from that I think it is bloody hilarious. Already widely viewed but no apologies from me for those who have already seen it.
******** Well I hope that you caught this video before it was removed by EMI for infringing the copyright of the original song. I guess that it didn't make JayZ and Alicia Keys look too cool but it just goes to show how little humour these corporations have!! ********
The council estate was not the best (sorry Lindylu and Roxy) but neither was it in anyway bad by today's standards. Whatever it was I had a happy few years there in the days when you just went around to someone's house, opened the back door and shouted "It's me. Are you in?"
The streets on the town were and are largely named after trees. I lived in Oak Road and there is Sycamore Road, Birchgrove, Elm Road and Willow Road.
Well, I have definitely gone up the world because the Radiotherapy "suite" at the Marsden is also named after trees but I am in the Juniper suite. How posh is that! It's almost like I should be handed a scone with jam and cream upon exit. "That's you treatment finished for today, Swordfish and don't forget your scone. Single or double cream". Mmmmmmmmm.
Back in the real world the following video, plucked from You Tube captures the working class South Wales spirit, self-parody and also the ability to prick the pompous. Aside from that I think it is bloody hilarious. Already widely viewed but no apologies from me for those who have already seen it.
******** Well I hope that you caught this video before it was removed by EMI for infringing the copyright of the original song. I guess that it didn't make JayZ and Alicia Keys look too cool but it just goes to show how little humour these corporations have!! ********
Medical Update
Today was clinic day, so I got to chat to the doctor and my specialist nurse before my radiotherapy treatment.
I say "doctor" but I was lucky enough to see the head of radiotherapy and therefore ask a lot of unanswered questions about my treatment programme as a whole. I have taken a shine to the head of radiotherapy as she is quite a "forward" person and is very happy to engage you. It makes a recipe for a clear and frank exchange. All of staff are good and the other heads of departments are spot on too, but I find an easiness in getting my point across to this lady without having to choose my words.
My shift from standard trial process to more chemotherapy and radiotherapy means that I am now in another process that I have to learn about.
Here are some relevant facts
My latest blood results are OK, so I still don't need a blood transfusion. I am pleased about that though would feel if happier if my haemoglobin wasn't just marginally above the requirement.
I am being given a big dose of radiotherapy and so can only go through the process once. Equally significantly, I will not be reviewed for operation until twelve weeks after the end of radiotherapy and chemotherapy treatment; that takes us into December. The reason for this is that whereas the delay before surgery after chemotherapy is to allow the body to recover the delay after radiotherapy is to allow the radiotherapy to keep working.
So it is a time for calm, routine and just keep doing the things that I am doing.
On a downside note eating is now becoming difficult. My ability to eat has deterioriated a lot in the last week or so and I am using fizzy drinks to get food down. I say this whilst maintaining a fairly normal diet. I will keep an eye on things but may have to compromise further soon.
All said and down, at the moment I am a "Swordfish" without any real vices. It must be the first time in adulthood and it is just a little bit frightening. Unlike Oscar Wilde, I can even resist temptation!
I say "doctor" but I was lucky enough to see the head of radiotherapy and therefore ask a lot of unanswered questions about my treatment programme as a whole. I have taken a shine to the head of radiotherapy as she is quite a "forward" person and is very happy to engage you. It makes a recipe for a clear and frank exchange. All of staff are good and the other heads of departments are spot on too, but I find an easiness in getting my point across to this lady without having to choose my words.
My shift from standard trial process to more chemotherapy and radiotherapy means that I am now in another process that I have to learn about.
Here are some relevant facts
My latest blood results are OK, so I still don't need a blood transfusion. I am pleased about that though would feel if happier if my haemoglobin wasn't just marginally above the requirement.
I am being given a big dose of radiotherapy and so can only go through the process once. Equally significantly, I will not be reviewed for operation until twelve weeks after the end of radiotherapy and chemotherapy treatment; that takes us into December. The reason for this is that whereas the delay before surgery after chemotherapy is to allow the body to recover the delay after radiotherapy is to allow the radiotherapy to keep working.
So it is a time for calm, routine and just keep doing the things that I am doing.
On a downside note eating is now becoming difficult. My ability to eat has deterioriated a lot in the last week or so and I am using fizzy drinks to get food down. I say this whilst maintaining a fairly normal diet. I will keep an eye on things but may have to compromise further soon.
All said and down, at the moment I am a "Swordfish" without any real vices. It must be the first time in adulthood and it is just a little bit frightening. Unlike Oscar Wilde, I can even resist temptation!
Wednesday 4 August 2010
Swordfish and Ospreys - Another Ramble
A few people have asked me "Why the name Swordfish".
The truth is that I closed my eyes, cleared my mind and let the first thing swim in. The aim was to choose something in a symbolic and archetypal manner rather than a logical manner.
I could explain the choice in many different ways but the validation of picking a good symbol is that it will easily morph its meaning as the circumstances change.
I could wax lyrical about the two elements of the name i.e. the Sword, which is symbolic of the mental faculty and the fish which, amongst other things, is symbolic of death (change) and resurrection (Christians will identify with that as it is the symbol that early Christianity associated with Jesus).
I could go on forever about this subject but it is irrelevant. Right now I am interested in the characteristic of the Swordfish that encourages it to dive deeply and quickly when under attack. Sometimes it even spears its nose into the sea bed.
Last month was akin to that. Bad news forced me to go deeper and took me down quickly and forcefully. I have gained from the journey back up where there is time to reconcile events, learn from them and enjoy swimming in calmer waters for the time being.
Now I am not the family's great observer of nature. That mantle is shared between my father and my sister.
As I have journeyed through this illness I have felt more affinity with simple aspects of nature even if it is just watching the wildlife whilst out in the back garden. I have even found myself watching a few nature programmes recently. Nature programmes are something that I will watch if they are on and they are well produced, but I even found myself recording one a few nights ago.
So there I was with Kitten last night watching a programme called "Wild Wales". Ten years ago I might have been hoping that it was a programme about the underground party scene but here I was watching a programme about Chuffs in Angelsea, different types of moss (which I thought was stretching it a bit far) but then the beautiful osprey.
The osprey is a creature that I have admired since childhood. Not that I have spent much time thinking about it, but I remember seeing footage of it catching fish in Scotland. I had always associated this bird with Scotland; I think that when I saw the original footage many years ago there were six pairs of the birds in Scotland and that efforts were being made to encourage a growth in the population.
Of course the closest I have been to Ospreys recently is watching the eponymous Welsh rugby team on the tele and I always wondered why a team would be named after a bird that isn't native to Wales.
The programme put me straight. Ospreys started to "settle" (they are migratory) in Wales in around 2004 and have a growing presence. The filming of the bird for the Wild Wales programme was on the estuary at Port Meirion, which is famous itself as the village in which the original cult 1960's series "The Prisoner" was filmed. The village is now widely known beyond this particular slice of infamy, but again it has relevance to this blog because of a missed opportunity to go there.
I have thought many times about staying in Port Meirion but my one concrete opportunity to go there was missed, somewhat ironically, when I chose to walk up Cadair Idris instead. Cadair Idris is the mountain that I have mentioned several times on this blog and on the day in question I chose to venture with Gandalf, Bee and Beard instead of my parents Cymraes, Grumpy my sister Tricky Crow and brother-in-law Dumbledore the four of whom were off to visit the "Prisoner Village".
Anyway back to Wild Wales and the osprey. The footage of the osprey taught me something new, as all of the previous footage I had seen of the bird hunting was of it swooping in at an angle to the water and hooking the fish out of the water. I did not know that they mostly hover and then plunge down into the water, a sort of attack form of the Swordfish's defence characteristic.
So what is the point of this ramble through Wild Wales? Well it is simply that at this time I am digging and digging deeper and I guess that will be reflected in some of my posts over the next period.
Unlike July though I am descending in attack and not in defence.
The truth is that I closed my eyes, cleared my mind and let the first thing swim in. The aim was to choose something in a symbolic and archetypal manner rather than a logical manner.
I could explain the choice in many different ways but the validation of picking a good symbol is that it will easily morph its meaning as the circumstances change.
I could wax lyrical about the two elements of the name i.e. the Sword, which is symbolic of the mental faculty and the fish which, amongst other things, is symbolic of death (change) and resurrection (Christians will identify with that as it is the symbol that early Christianity associated with Jesus).
I could go on forever about this subject but it is irrelevant. Right now I am interested in the characteristic of the Swordfish that encourages it to dive deeply and quickly when under attack. Sometimes it even spears its nose into the sea bed.
Last month was akin to that. Bad news forced me to go deeper and took me down quickly and forcefully. I have gained from the journey back up where there is time to reconcile events, learn from them and enjoy swimming in calmer waters for the time being.
Now I am not the family's great observer of nature. That mantle is shared between my father and my sister.
As I have journeyed through this illness I have felt more affinity with simple aspects of nature even if it is just watching the wildlife whilst out in the back garden. I have even found myself watching a few nature programmes recently. Nature programmes are something that I will watch if they are on and they are well produced, but I even found myself recording one a few nights ago.
So there I was with Kitten last night watching a programme called "Wild Wales". Ten years ago I might have been hoping that it was a programme about the underground party scene but here I was watching a programme about Chuffs in Angelsea, different types of moss (which I thought was stretching it a bit far) but then the beautiful osprey.
The osprey is a creature that I have admired since childhood. Not that I have spent much time thinking about it, but I remember seeing footage of it catching fish in Scotland. I had always associated this bird with Scotland; I think that when I saw the original footage many years ago there were six pairs of the birds in Scotland and that efforts were being made to encourage a growth in the population.
Of course the closest I have been to Ospreys recently is watching the eponymous Welsh rugby team on the tele and I always wondered why a team would be named after a bird that isn't native to Wales.
The programme put me straight. Ospreys started to "settle" (they are migratory) in Wales in around 2004 and have a growing presence. The filming of the bird for the Wild Wales programme was on the estuary at Port Meirion, which is famous itself as the village in which the original cult 1960's series "The Prisoner" was filmed. The village is now widely known beyond this particular slice of infamy, but again it has relevance to this blog because of a missed opportunity to go there.
I have thought many times about staying in Port Meirion but my one concrete opportunity to go there was missed, somewhat ironically, when I chose to walk up Cadair Idris instead. Cadair Idris is the mountain that I have mentioned several times on this blog and on the day in question I chose to venture with Gandalf, Bee and Beard instead of my parents Cymraes, Grumpy my sister Tricky Crow and brother-in-law Dumbledore the four of whom were off to visit the "Prisoner Village".
Anyway back to Wild Wales and the osprey. The footage of the osprey taught me something new, as all of the previous footage I had seen of the bird hunting was of it swooping in at an angle to the water and hooking the fish out of the water. I did not know that they mostly hover and then plunge down into the water, a sort of attack form of the Swordfish's defence characteristic.
So what is the point of this ramble through Wild Wales? Well it is simply that at this time I am digging and digging deeper and I guess that will be reflected in some of my posts over the next period.
Unlike July though I am descending in attack and not in defence.
Boogle Takes a Trip to the Radiotherapy Unit
I went into the office early yesterday morning to have a number of conversations about current projects and my treatment programme.
I was out of there by 11:45am so that I could make a radiotherapy appointment which was "bang slap" in the middle of the day at 1:00pm. Fortunately, as we get towards the end of this week my appointments are scheduled closer to where I would like them to be, which is at the end of day. The first couple of weeks of appointments have to dovetail with the schedule that is already there for existing patients but then your preference can be accommodated, as others' programmes finish.
As I was getting to the hospital by train, Kitten arranged to pick me up and it was great to see not just her but also Boogle's smiling face when I came out of the treatment room.
I haven't said much about what the radiotherapy treatment entails as from a patient's perspective very little appears to happen.
I have mentioned that the radiotherapy suite is a dedicated new suite at the hospital. The machine that I am treated by is very sophisticated and an its four elements are able to rotate 360 degrees around me, allowing it to deliver the X-Rays from above, below and the sides. I have just scanned the web for a decent picture of the machine but I can't find one that seems to be as up to date as this impressive piece of machinery.
The bed I lay on is adjustable via handset electronics in three different dimensions allowing the radiographers to get my body positioned exactly where they want it. The positioning is aided by laser markers and they make painstaking minor physical adjustments (in addition to the bed positioning), before leaving the room and leaving me to lay completely still for around 15-20 minutes whilst they deliver the treatment and produced scans from an adjacent room.
To be honest I find the whole experience quite relaxing and the communicative manner of the personnel removes the impressive but austere feel of the environment. When I came out yesterday, the senior radiographer said goodbye and, seeing my daughter, invited her to come and look at the treatment room.
I feel that this was a great move because it removed the mystique of "daddy's treatment" from young Boogle's mind and, I assume, some of the worry.
She was allowed to use the handset to rotate the "big machine" and this will have given her the feeling of just a little control over the situation.
Later in the day Boogle saw Kitten at the computer looking at this blog and she asked if she could leave a comment. We try and include the children in the process as much as possible whilst sparing them from things that we believe that it isn't helpful for them to know, so Kitten was happy to help her.
Boogle is nearly three years older than Huffty and her awareness of the situation is much greater. I hope that little things like yesterday will help her feel more comfortable in what is a difficult environment.
I was out of there by 11:45am so that I could make a radiotherapy appointment which was "bang slap" in the middle of the day at 1:00pm. Fortunately, as we get towards the end of this week my appointments are scheduled closer to where I would like them to be, which is at the end of day. The first couple of weeks of appointments have to dovetail with the schedule that is already there for existing patients but then your preference can be accommodated, as others' programmes finish.
As I was getting to the hospital by train, Kitten arranged to pick me up and it was great to see not just her but also Boogle's smiling face when I came out of the treatment room.
I haven't said much about what the radiotherapy treatment entails as from a patient's perspective very little appears to happen.
I have mentioned that the radiotherapy suite is a dedicated new suite at the hospital. The machine that I am treated by is very sophisticated and an its four elements are able to rotate 360 degrees around me, allowing it to deliver the X-Rays from above, below and the sides. I have just scanned the web for a decent picture of the machine but I can't find one that seems to be as up to date as this impressive piece of machinery.
The bed I lay on is adjustable via handset electronics in three different dimensions allowing the radiographers to get my body positioned exactly where they want it. The positioning is aided by laser markers and they make painstaking minor physical adjustments (in addition to the bed positioning), before leaving the room and leaving me to lay completely still for around 15-20 minutes whilst they deliver the treatment and produced scans from an adjacent room.
To be honest I find the whole experience quite relaxing and the communicative manner of the personnel removes the impressive but austere feel of the environment. When I came out yesterday, the senior radiographer said goodbye and, seeing my daughter, invited her to come and look at the treatment room.
I feel that this was a great move because it removed the mystique of "daddy's treatment" from young Boogle's mind and, I assume, some of the worry.
She was allowed to use the handset to rotate the "big machine" and this will have given her the feeling of just a little control over the situation.
Later in the day Boogle saw Kitten at the computer looking at this blog and she asked if she could leave a comment. We try and include the children in the process as much as possible whilst sparing them from things that we believe that it isn't helpful for them to know, so Kitten was happy to help her.
Boogle is nearly three years older than Huffty and her awareness of the situation is much greater. I hope that little things like yesterday will help her feel more comfortable in what is a difficult environment.
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