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".
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