Whilst certain things are beyond my control there are some things that I can push for if my energy keeps recovering.
It would be great if I could get into some sort of exercise again and with winter coming and the outdoor ice rink available at lunchtimes that is where I am focused.
I am going to start practising Chi-Kung again soon to help build the energy. I had put this to one side when things got really tough because I was so weak, but now seems a good time to start.
Also, I haven't started on the decks as I suggested I might do and they are ready and waiting.
So, no boozing and brawling over the next few months but some positive activities to keep me occupied. These will supplement a return to relatively normal working patterns whilst also being careful to make sure that I rest plenty too.
If I am up to it, it would be a pleasure to visit South Wales to see the new babies and also to visit Kitten's parents in North Wales. Who knows my little family might even be able to get on a little break in this country too.
Wednesday, 29 September 2010
Mixed Messages
Contrary to what I posted yesterday, it looks as if Kitten's mum will be kept in hospital for a little while yet. There is concern in the hospital that they are not yet on top of pain management for her and they must be happy before she can go home.
I am off into work today for an afternoon presentation. I am taking in a visit to the Mad Canadian Osteopath on the way at 11am. He is working local to my work, so I can do the commute, have my treatment and then walk ten minutes to the office.
I was able to eat again yesterday but the ability regressed somewhat. There was a lot more pain and obstruction at the top of the oesophagus rather than just at the bottom, where the bulk of the tumour is cited.
When I say that there was obstruction at the top of the oesophagus I should put it into perspective that I the biggest thing I am eating is minced meat, it's not as if I am eating bread or anything of bulk.
As I come out of radiotherapy, I have no idea whether my progression is meant to be linear or whether it is likely to be two steps forward and one back. I will discuss these things at my next clinic appointment on the 4th October.
I am off into work today for an afternoon presentation. I am taking in a visit to the Mad Canadian Osteopath on the way at 11am. He is working local to my work, so I can do the commute, have my treatment and then walk ten minutes to the office.
I was able to eat again yesterday but the ability regressed somewhat. There was a lot more pain and obstruction at the top of the oesophagus rather than just at the bottom, where the bulk of the tumour is cited.
When I say that there was obstruction at the top of the oesophagus I should put it into perspective that I the biggest thing I am eating is minced meat, it's not as if I am eating bread or anything of bulk.
As I come out of radiotherapy, I have no idea whether my progression is meant to be linear or whether it is likely to be two steps forward and one back. I will discuss these things at my next clinic appointment on the 4th October.
Tuesday, 28 September 2010
Kitten Surgery
It is all kicking off at the moment.
As I head into clearer waters, we have had Kitten's mum in hospital and my mother, Cymraes, is also suffering with a bad back.
To add into the mix Kitten has been seening a consultant about a problem with her leg and she will be having surgery on November 8th.
My condition meant that the consultant was happy to put her to the front of the queue, leaving Kitten plenty of time to recover before we receive news in December of the success or otherwise of my treatment.
As I head into clearer waters, we have had Kitten's mum in hospital and my mother, Cymraes, is also suffering with a bad back.
To add into the mix Kitten has been seening a consultant about a problem with her leg and she will be having surgery on November 8th.
My condition meant that the consultant was happy to put her to the front of the queue, leaving Kitten plenty of time to recover before we receive news in December of the success or otherwise of my treatment.
Homecoming Queens
Yesterday, saw the return of Swelly Belly and baby from hospital. As the baby was premature there is still some early nurturing to be done. Our thoughts and congratulations are with Swelly Belly and Tattoo boy and we look forward to continued progress from baby.
Also, good news from North Wales where it looks like Kitten's mum will be able to return home soon. There is still some way to go for diagnosis but it looks as if the problem could be manageable through dietary adjustments. Kitten's mum has had a really rough couple of weeks and, under normal circumstances Kitten would have had a greater presence in North Wales to support her mum and also help her dad. So, our thoughts are also with them and we hope that Kitten's mum is able to get a confirmatory diagnosis soon and the medical support required to get on top of the condition.
Also, good news from North Wales where it looks like Kitten's mum will be able to return home soon. There is still some way to go for diagnosis but it looks as if the problem could be manageable through dietary adjustments. Kitten's mum has had a really rough couple of weeks and, under normal circumstances Kitten would have had a greater presence in North Wales to support her mum and also help her dad. So, our thoughts are also with them and we hope that Kitten's mum is able to get a confirmatory diagnosis soon and the medical support required to get on top of the condition.
Monday, 27 September 2010
Anger and Change
On the weekend I was asked whether I get angry?
In some ways that is a bit like asking whether snow melts because anger is part of my nature. That is where my creative streak comes from and it has been with me since birth.
As an adult I have learned to work with anger to channel that energy into things that are productive rather than destructive, but back to the question.
The fact is that I am not angry about being ill. That's just the way it is. What I do find though, is that after periods when I have been under duress anger rears its head just as I get into calmer waters. It is like a release; a kind of "what goes down must come up" and I cannot anticipate it.
A seemly innocuous conversation can get out of hand very quickly. I should stress here that I am talking about verbal expression of anger and that outright physical anger, whilst not alien to my nature is under control. That's not to say that I don't get close to the wind.
The point is that as you go through this process month after month and you come under duress your emotions take an absolute battering as well as your physical-self. I am not aware of this at the time because you are just getting on with dealing with things day by day but, as I said, it is when you relax that you are can be caught unaware.
I noticed this first when there was a repeated pattern of taking steroids for the first few days of chemotherapy and as the days got easier....bang....the anger would surface. Here it was less subtle because the rise in energy was palpable and synthetic and surging.
I take two views about occasional outburst under these situations. The first is that I keep on trying to anticipate with them, deal with them and channel more constructively. Nobody wants to get caught on the end of someone else's anger and it is painful for me and the recipient because it is only someone very close to me who is going to be on the end of it. They are the only people that your defences are down enough for it to be able to take effect. It is an unfortunate paradox that they are also the people that you would least like to hurt or offend.
Kitten and I maintain a dialogue and she is not shy in coming forward in telling me when she feels that I am getting too grouchy and I am not shy in telling her why I am getting grouchy.
Being ill like this is not easy both physically and psychologically and I am a long way short of perfect, but illness also offers opportunities.
Everybody likes the idea that they can change the things about themselves that they are not comfortable with. Well, unlike New Years' resolutions and other good intentions, illness gives you both insight into your flaws and a pathway for change.
Having been ill once before in my life, I view illness as an enormous neon flashing sign of Piccadilly Circus proportions warning that there is a need for change. So, in my opinion every physical journey of this type is also a spiritual journey and a pathway of change. The trick is to embrace that change.
The changes I have made already are ones that will stick throughout life. You will not believe it but some people just don't get the message. I was at the Marsden a few days ago and saw someone outside with intravenous chemotherapy going into their body whilst they smoked a cigarette. Now, I know that their cancer may not have been caused by cigarettes but it really does illustrate a lack of willingness or an inability to recognised that there body is in a serious and precarious position.
There are plenty of changes that I have made and some that I won't own up too on a public blog, but a simple one that I will mention is "over-drinking". I am not someone who has drank all the time in the past, but when I have it is never a couple of glasses. It is more "in for a penny, in for a pound".
For years I have been thinking that I have had some good years drinking in heavy bouts and that my body has had enough, but there hasn't been any reason too change. When you go through illness like this it gives you an opportunity to leave the wheel behind and have reason not to revert.
I am not saying that I won't ever go out and have one too many, but you will never again see me with a free-poured Jack Daniels and Red Bull, a glass of champagne a Long Island Iced Tea and a Budweiser sitting prettily in front of me at the same time, if you get my drift. There is now a sense that the body privileges the person to relax with a drink. Despite the fact that that drink did not make me ill, and I did not consume it often enough for it to do so, I realise that it is not my right to hammer it occasionally and continually and expect it to recover. This is because I have experienced what it is like to see one's body to fail.
Whilst I have dealt with major and necessary changes immediately there is also an opportunity to address minor flaws as one comes out of the depths of the treatment and, hopefully, the illness. Those flaws can be observed easily through the eyes of change that illness provides and it is either an opportunity that the individual embraces or ignores.
All said and done though a person's nature is not up for change, otherwise they become someone else.
In some ways that is a bit like asking whether snow melts because anger is part of my nature. That is where my creative streak comes from and it has been with me since birth.
As an adult I have learned to work with anger to channel that energy into things that are productive rather than destructive, but back to the question.
The fact is that I am not angry about being ill. That's just the way it is. What I do find though, is that after periods when I have been under duress anger rears its head just as I get into calmer waters. It is like a release; a kind of "what goes down must come up" and I cannot anticipate it.
A seemly innocuous conversation can get out of hand very quickly. I should stress here that I am talking about verbal expression of anger and that outright physical anger, whilst not alien to my nature is under control. That's not to say that I don't get close to the wind.
The point is that as you go through this process month after month and you come under duress your emotions take an absolute battering as well as your physical-self. I am not aware of this at the time because you are just getting on with dealing with things day by day but, as I said, it is when you relax that you are can be caught unaware.
I noticed this first when there was a repeated pattern of taking steroids for the first few days of chemotherapy and as the days got easier....bang....the anger would surface. Here it was less subtle because the rise in energy was palpable and synthetic and surging.
I take two views about occasional outburst under these situations. The first is that I keep on trying to anticipate with them, deal with them and channel more constructively. Nobody wants to get caught on the end of someone else's anger and it is painful for me and the recipient because it is only someone very close to me who is going to be on the end of it. They are the only people that your defences are down enough for it to be able to take effect. It is an unfortunate paradox that they are also the people that you would least like to hurt or offend.
Kitten and I maintain a dialogue and she is not shy in coming forward in telling me when she feels that I am getting too grouchy and I am not shy in telling her why I am getting grouchy.
Being ill like this is not easy both physically and psychologically and I am a long way short of perfect, but illness also offers opportunities.
Everybody likes the idea that they can change the things about themselves that they are not comfortable with. Well, unlike New Years' resolutions and other good intentions, illness gives you both insight into your flaws and a pathway for change.
Having been ill once before in my life, I view illness as an enormous neon flashing sign of Piccadilly Circus proportions warning that there is a need for change. So, in my opinion every physical journey of this type is also a spiritual journey and a pathway of change. The trick is to embrace that change.
The changes I have made already are ones that will stick throughout life. You will not believe it but some people just don't get the message. I was at the Marsden a few days ago and saw someone outside with intravenous chemotherapy going into their body whilst they smoked a cigarette. Now, I know that their cancer may not have been caused by cigarettes but it really does illustrate a lack of willingness or an inability to recognised that there body is in a serious and precarious position.
There are plenty of changes that I have made and some that I won't own up too on a public blog, but a simple one that I will mention is "over-drinking". I am not someone who has drank all the time in the past, but when I have it is never a couple of glasses. It is more "in for a penny, in for a pound".
For years I have been thinking that I have had some good years drinking in heavy bouts and that my body has had enough, but there hasn't been any reason too change. When you go through illness like this it gives you an opportunity to leave the wheel behind and have reason not to revert.
I am not saying that I won't ever go out and have one too many, but you will never again see me with a free-poured Jack Daniels and Red Bull, a glass of champagne a Long Island Iced Tea and a Budweiser sitting prettily in front of me at the same time, if you get my drift. There is now a sense that the body privileges the person to relax with a drink. Despite the fact that that drink did not make me ill, and I did not consume it often enough for it to do so, I realise that it is not my right to hammer it occasionally and continually and expect it to recover. This is because I have experienced what it is like to see one's body to fail.
Whilst I have dealt with major and necessary changes immediately there is also an opportunity to address minor flaws as one comes out of the depths of the treatment and, hopefully, the illness. Those flaws can be observed easily through the eyes of change that illness provides and it is either an opportunity that the individual embraces or ignores.
All said and done though a person's nature is not up for change, otherwise they become someone else.
Sunday, 26 September 2010
Eating Improvement Continues its Ascent
Things are starting to move for me now.
I have had two solid meals today, both of them of the mashed potato and mince or tenderised meat variety. However, this is something that I couldn't have countenanced a week ago.
I am drinking Ribena, which would not have been possible because of the acidity and I am also drinking chocolate shakes as well as strawberry. These were also out of bounds due to acidity. It is a good job that I can now have the variety as the strawberry ones are now difficult to get hold of. Our local chemist was busy ringing around on our behalf on Friday afernoon.
The whole process of eating is less painful and the tumour is generally less painful.
Whilst the wider picture is about how well the radiotherapy has worked in reducing the tumour, rather than how easy it is for me to eat, having day to day life become easier is a welcome respite from the torrid waters of the last few weeks.
I am in the office tomorrow morning and the fact that I am getting more calories in and my energy levels are better gives me much more confidence in thinking that I will be able to navigate the morning successfully. This is of particular significance as I am doing a presentation to people that I have not met before. That takes a little more thought and demands a degree of "slickness" to make a good impression.
I have had two solid meals today, both of them of the mashed potato and mince or tenderised meat variety. However, this is something that I couldn't have countenanced a week ago.
I am drinking Ribena, which would not have been possible because of the acidity and I am also drinking chocolate shakes as well as strawberry. These were also out of bounds due to acidity. It is a good job that I can now have the variety as the strawberry ones are now difficult to get hold of. Our local chemist was busy ringing around on our behalf on Friday afernoon.
The whole process of eating is less painful and the tumour is generally less painful.
Whilst the wider picture is about how well the radiotherapy has worked in reducing the tumour, rather than how easy it is for me to eat, having day to day life become easier is a welcome respite from the torrid waters of the last few weeks.
I am in the office tomorrow morning and the fact that I am getting more calories in and my energy levels are better gives me much more confidence in thinking that I will be able to navigate the morning successfully. This is of particular significance as I am doing a presentation to people that I have not met before. That takes a little more thought and demands a degree of "slickness" to make a good impression.
Saturday, 25 September 2010
A Lifting of Energy
Today was quite a surprise because I went to Huffty's football match, came home and watched the end of the Chelsea match on the box and then went to the company BBQ and stayed there for a good few hours.
I would have expected to be completed washed out after the first hour of the BBQ but my energy levels were a complete contrast from yesterday.
We took the precaution of leaving before I got tired but, as can be seen by the time of posting, I wasn't overawed when I got back.
Overall an encouraging day and a pleasant family day. Things seem to be moving in the right direction and long may that continue.
I will be being cautious tomorrow to make sure that I rest plenty after a day of relative activity.
I would have expected to be completed washed out after the first hour of the BBQ but my energy levels were a complete contrast from yesterday.
We took the precaution of leaving before I got tired but, as can be seen by the time of posting, I wasn't overawed when I got back.
Overall an encouraging day and a pleasant family day. Things seem to be moving in the right direction and long may that continue.
I will be being cautious tomorrow to make sure that I rest plenty after a day of relative activity.
BBQ anyone
It's the company BBQ today, which is always a great day for the kids to run around. It is held at a club with great facilities on the banks of the Thames.
This year though there will be nothing on the menu for me. I guess that it is a flask with a milkshake!
I'm bearing up well though, having been to Huffty's football match this morning and looking forward to an afternoon out.
It is the closest that my little family has had to a day out for a while and I am sure that my colleagues will appreciate a quieter than usual Swordfish.
This year though there will be nothing on the menu for me. I guess that it is a flask with a milkshake!
I'm bearing up well though, having been to Huffty's football match this morning and looking forward to an afternoon out.
It is the closest that my little family has had to a day out for a while and I am sure that my colleagues will appreciate a quieter than usual Swordfish.
Gaining Weight
There was some dramatic weight loss last week when I couldn't eat properly.
I was twelve stone pre-radiotherapy. I deliberately got rid of a few pounds to 11st 9lbs but then the involuntary weight loss kicked in and I went down to 11st 2lbs, which is about where I was when my treatment started in the spring. Remember that I put the extra weight on in readiness for the scheduled operation.
After 11st 2lbs I slid gradually to 10st 12lbs but then there was a dramatic loss to 10st 3lbs when it became very difficult to eat.
What was particularly worrying was the speed of the loss over a few days. It makes you wonder where it will end.
Thanks to my magic milkshakes I am now back up to 10st 8lbs. So, rather than sitting here saying "weight loss stemmed" I am feeling good that a few pounds are going back on.
I had to reach for the oral morphine in the middle of the night but that is only the third dose this week and the only pain killer that I have taken.
There are plenty of negatives around too, but I am not interested in those for the moment. What I have summarised is the progress and that is a good thing.
I was twelve stone pre-radiotherapy. I deliberately got rid of a few pounds to 11st 9lbs but then the involuntary weight loss kicked in and I went down to 11st 2lbs, which is about where I was when my treatment started in the spring. Remember that I put the extra weight on in readiness for the scheduled operation.
After 11st 2lbs I slid gradually to 10st 12lbs but then there was a dramatic loss to 10st 3lbs when it became very difficult to eat.
What was particularly worrying was the speed of the loss over a few days. It makes you wonder where it will end.
Thanks to my magic milkshakes I am now back up to 10st 8lbs. So, rather than sitting here saying "weight loss stemmed" I am feeling good that a few pounds are going back on.
I had to reach for the oral morphine in the middle of the night but that is only the third dose this week and the only pain killer that I have taken.
There are plenty of negatives around too, but I am not interested in those for the moment. What I have summarised is the progress and that is a good thing.
Friday, 24 September 2010
Panning Ahead
As I gradually make a recovery from the battering of chemo and radiotherapy it is good to think of the potential for some normal days out with Kitten and the family.
Recent trips out just to watch Huffty play football or going to Chelsea have been tiring but manageable and necessary for the mind to expand away from resting on the sofa and "feeling tired". I am always cautious about adopting a mindset of "I can't eat" or "I can't exercise". You have to put it to the test regularly because the situation changes day by day and it is easy to sink back into the illness.
So, this morning I managed another decent chunk of work and I have set up two half days in the office next week for presentations.
This afternoon the kids were at friends so Kitten and I decided to go out. The weather was lousy, there was nothing on at the cinema at that time of the afternoon, and I can't go to a restaurant so we decided just to pop down to the local shopping centre.
As I was out for a few hours at Chelsea on Wednesday, I thought that a couple of hours in a shopping centre would be a piece of cake. I was surprised that as soon as I got out of the car I had absolutely no energy and I felt like I was walking through treacle.
I lasted about half an hour and went home to be sick.
It is a game at the moment - push, relax, hold - push, relax, hold. It's not an easy game but, like I said, I am hoping that in a few week time I will be able get out for a proper day out with my family.
Recent trips out just to watch Huffty play football or going to Chelsea have been tiring but manageable and necessary for the mind to expand away from resting on the sofa and "feeling tired". I am always cautious about adopting a mindset of "I can't eat" or "I can't exercise". You have to put it to the test regularly because the situation changes day by day and it is easy to sink back into the illness.
So, this morning I managed another decent chunk of work and I have set up two half days in the office next week for presentations.
This afternoon the kids were at friends so Kitten and I decided to go out. The weather was lousy, there was nothing on at the cinema at that time of the afternoon, and I can't go to a restaurant so we decided just to pop down to the local shopping centre.
As I was out for a few hours at Chelsea on Wednesday, I thought that a couple of hours in a shopping centre would be a piece of cake. I was surprised that as soon as I got out of the car I had absolutely no energy and I felt like I was walking through treacle.
I lasted about half an hour and went home to be sick.
It is a game at the moment - push, relax, hold - push, relax, hold. It's not an easy game but, like I said, I am hoping that in a few week time I will be able get out for a proper day out with my family.
Thursday, 23 September 2010
Caution Reigns
It is clear that I am in a far better place than I was just over a week ago, when I couldn't eat.
The fact that I am getting calories in is encouraging and, once again today, I have managed a sloppy sheperd's pie type of affair as well as the milkshakes.
On a more cautious note the meat is ground finely and this and the sloppy potato are still causing me a lot of problems. There hasn't really been any improvement in the eating all week and it would be encouraging to see some progress.
If this is compared with when I was on my original chemotherapy treatment with additional Avastin there is a noticeable gap. Then I was eating almost normally.
Patience is the key, but not knowing when to expect improvement, or how much to expect requires a degree of stoicism.
I have been asked whether the "not knowing" is difficult, but after a while you do get into a "day at a time" mindset. I feel that mindset to be healthy because it puts the focus on the job in hand and removes most of the worry. It doesn't necessarily help those around you though.
The fact that I am getting calories in is encouraging and, once again today, I have managed a sloppy sheperd's pie type of affair as well as the milkshakes.
On a more cautious note the meat is ground finely and this and the sloppy potato are still causing me a lot of problems. There hasn't really been any improvement in the eating all week and it would be encouraging to see some progress.
If this is compared with when I was on my original chemotherapy treatment with additional Avastin there is a noticeable gap. Then I was eating almost normally.
Patience is the key, but not knowing when to expect improvement, or how much to expect requires a degree of stoicism.
I have been asked whether the "not knowing" is difficult, but after a while you do get into a "day at a time" mindset. I feel that mindset to be healthy because it puts the focus on the job in hand and removes most of the worry. It doesn't necessarily help those around you though.
Autumn Arrives
So this morning we had the Autumn Equinox and the Harvest Moon.
It certainly looks like autumn in London, though not the crisp clear sunny kind of autumnal day that everyone likes. Rather it is bleak and rainy.
Against the backdrop of hte full moon Chelsea lost 4-3 at home last night against Newcastle, but it was good to be out with the chaps. Notoplip had kindly arranged for a black cab to pick us up directly from outside the ground, which took the pain out of getting home and back to my life of milkshakes.
I managed a decent day's work yesterday, so it was a full day for me and I was very tired by the end of it. Still, it shows a huge amount of progress from last week.
Meanwhile, Kitten's mum is at least being seen now. She is still in hospital but the doctors are working on diagnosis. The sooner they get to the bottom of things the better. We wish her well.
It certainly looks like autumn in London, though not the crisp clear sunny kind of autumnal day that everyone likes. Rather it is bleak and rainy.
Against the backdrop of hte full moon Chelsea lost 4-3 at home last night against Newcastle, but it was good to be out with the chaps. Notoplip had kindly arranged for a black cab to pick us up directly from outside the ground, which took the pain out of getting home and back to my life of milkshakes.
I managed a decent day's work yesterday, so it was a full day for me and I was very tired by the end of it. Still, it shows a huge amount of progress from last week.
Meanwhile, Kitten's mum is at least being seen now. She is still in hospital but the doctors are working on diagnosis. The sooner they get to the bottom of things the better. We wish her well.
Wednesday, 22 September 2010
Lads' Night Out
My trips outside of the house have been few and far between recently.
I've been to the Huffty's football matches and I managed a trip to Stamford Bridge to watch Chelsea with him on the weekend.
Well tonight I am hoping to go with my mates to watch Chelsea vs Newcastle. Again it will be an in and out occasion. Normally, we go a couple of times a year to these weekday features and then have a drinking session afterwards. I guess that I will be missing the drinking session but it will be good to get out of the house without any responsibilities and just have a laugh. Hopefully, I will be feeling up to it for a few hours.
There are four of us going; Billy the Fish, D.A. Decorator, Notoplip and me. The game isn't a big occasion being the Carling Cup so it is just a chance for the boys to catch up and I am sure that the company will give me a lift.
I've been to the Huffty's football matches and I managed a trip to Stamford Bridge to watch Chelsea with him on the weekend.
Well tonight I am hoping to go with my mates to watch Chelsea vs Newcastle. Again it will be an in and out occasion. Normally, we go a couple of times a year to these weekday features and then have a drinking session afterwards. I guess that I will be missing the drinking session but it will be good to get out of the house without any responsibilities and just have a laugh. Hopefully, I will be feeling up to it for a few hours.
There are four of us going; Billy the Fish, D.A. Decorator, Notoplip and me. The game isn't a big occasion being the Carling Cup so it is just a chance for the boys to catch up and I am sure that the company will give me a lift.
Tuesday, 21 September 2010
Harvest Moon - The Descent of Karma
Many moons ago, my mother (Cymraes) accused me of being shallow, because of my fondness for visiting night clubs. I was deep into my twenties at the time, so no "spring chicken" but hardly past it.
This post is long-winded and philosophical because I am at that point of my journey with this disease where the markers have been laid. I don't know which direction I will be heading in, but nature does. I dedicate the post to Cymraes because it is about a poem I wrote after I had returned from a nightclub "worse for wear" at 3am. Perhaps there is some beauty in the paradox of being "shallow" and "deep" at the same time, or in metamorphosing from one to the other in the time it takes to walk home?
The poem is relevant on a number of different levels. Firstly, it was written about the time of the harvest moon. The harvest moon is the full moon closest to the autumn equinox. This year the harvest moon and the autumn equinox coincide on Thursday of this week the 23rd of September.
The Harvest Moon is traditionally associated with helping farmers to bring in their crops because of the light it provides and there is a sense that after all the treatment I have had I am about to reap what has already been sown. Of course, my efforts to transcend my disease and a farmer's efforts to produce a decent crop are both at the mercy of many other factors. They both sit within a framework which nature has provided and it is she who ultimately decides upon success or failure. So although karma descends upon me, I will have no choice but to accept her ruling in the overall context of my life and nature and medicine's influence upon it.
I will not know what has been decided until December but I do know that the die is already cast.
Ultimately the poem is about the change of season from summer to autumn. The opening verses are the voice of summer and the reply is from autumn.
The voice of summer is unmistakably a lament. However, it is not a lament of self-pity but a lament of craving to understand. The power of the sun is waning and the hand of Autumn is purposeful, strong and ruthless. It cuts through the whimsical desires of summer to "deliver its true reward" i.e. what it has always been destined to receive.
There are strong mythological references here to the gods of the ancients, such as Nut the Egyptian Goddess of the skies, Isis the eternal mother, Nephthys and Anubis. More than anything else the poem is a lesson about the truth of the need to let go of the past in order to move to the future. That is what nature does as a matter of course. It is sometimes what people find difficult to do. In the beginning I was on a process of chemo - operation - chemo and it was easy to believe that I would get better. When that process failed to deliver it became harder. Now that the radiotherapy has finished and I have dealt with the day to day difficulties that the new treatment has challenged me with it is time to lift my head, focus on the future with a singular aim of getting better.
I remember shedding some tears with Kitten when we first realised that I might have cancer. This was pre-diagnosis and courtesy of an ill-judged post endoscopy form. However, I have not been able to shed a tear since. I have been moved many many times especially in interaction with my children but ultimately I don't engage with the process. Someone asked me recently if I cried and I said "No, but I wish I could". The poem contains some of the tears that should be released, but I am saving them for the all clear. I would rather shed tears of joy than sorrow. It would be a bit like sealing the Six Nations Grand Slam against England at Twickenham! I would be happy to blub like a baby in such circumstances.
As always I remain optimistic about my own outcome, but I am wise enough to understand that all I can do is my best then sit back and wait to see what happens. That fits neatly with the poem "Autumn Gold"
This post is long-winded and philosophical because I am at that point of my journey with this disease where the markers have been laid. I don't know which direction I will be heading in, but nature does. I dedicate the post to Cymraes because it is about a poem I wrote after I had returned from a nightclub "worse for wear" at 3am. Perhaps there is some beauty in the paradox of being "shallow" and "deep" at the same time, or in metamorphosing from one to the other in the time it takes to walk home?
The poem is relevant on a number of different levels. Firstly, it was written about the time of the harvest moon. The harvest moon is the full moon closest to the autumn equinox. This year the harvest moon and the autumn equinox coincide on Thursday of this week the 23rd of September.
The Harvest Moon is traditionally associated with helping farmers to bring in their crops because of the light it provides and there is a sense that after all the treatment I have had I am about to reap what has already been sown. Of course, my efforts to transcend my disease and a farmer's efforts to produce a decent crop are both at the mercy of many other factors. They both sit within a framework which nature has provided and it is she who ultimately decides upon success or failure. So although karma descends upon me, I will have no choice but to accept her ruling in the overall context of my life and nature and medicine's influence upon it.
I will not know what has been decided until December but I do know that the die is already cast.
Ultimately the poem is about the change of season from summer to autumn. The opening verses are the voice of summer and the reply is from autumn.
The voice of summer is unmistakably a lament. However, it is not a lament of self-pity but a lament of craving to understand. The power of the sun is waning and the hand of Autumn is purposeful, strong and ruthless. It cuts through the whimsical desires of summer to "deliver its true reward" i.e. what it has always been destined to receive.
There are strong mythological references here to the gods of the ancients, such as Nut the Egyptian Goddess of the skies, Isis the eternal mother, Nephthys and Anubis. More than anything else the poem is a lesson about the truth of the need to let go of the past in order to move to the future. That is what nature does as a matter of course. It is sometimes what people find difficult to do. In the beginning I was on a process of chemo - operation - chemo and it was easy to believe that I would get better. When that process failed to deliver it became harder. Now that the radiotherapy has finished and I have dealt with the day to day difficulties that the new treatment has challenged me with it is time to lift my head, focus on the future with a singular aim of getting better.
I remember shedding some tears with Kitten when we first realised that I might have cancer. This was pre-diagnosis and courtesy of an ill-judged post endoscopy form. However, I have not been able to shed a tear since. I have been moved many many times especially in interaction with my children but ultimately I don't engage with the process. Someone asked me recently if I cried and I said "No, but I wish I could". The poem contains some of the tears that should be released, but I am saving them for the all clear. I would rather shed tears of joy than sorrow. It would be a bit like sealing the Six Nations Grand Slam against England at Twickenham! I would be happy to blub like a baby in such circumstances.
As always I remain optimistic about my own outcome, but I am wise enough to understand that all I can do is my best then sit back and wait to see what happens. That fits neatly with the poem "Autumn Gold"
Monday, 20 September 2010
Progress Continues
I've eaten some "solid" food today. By solid I mean Weetabix sodden in milk and some very wet Sheperd's pie. I only managed a small amount of the latter, but it is a start.
I am still not taking any oral morphine, which is obviously a good indication regarding the pain.
Meanwhile my parents have returned home - thanks to them for all their help. Kitten and Boogle are also home, though her mum is still waiting to be seen properly. Pretty shameful seeing as she has been in hospital since Thursday night.
Kitten says that I look a lot "brighter" than when she left so things seem to be on the up generally. I guess I am in a lot better place that last week when I was unable to consume anything.
I am still not taking any oral morphine, which is obviously a good indication regarding the pain.
Meanwhile my parents have returned home - thanks to them for all their help. Kitten and Boogle are also home, though her mum is still waiting to be seen properly. Pretty shameful seeing as she has been in hospital since Thursday night.
Kitten says that I look a lot "brighter" than when she left so things seem to be on the up generally. I guess I am in a lot better place that last week when I was unable to consume anything.
Sunday, 19 September 2010
Target Fulfilled - Not for the Prudish or Faint-Hearted
Firstly, Huffty and I managed the match today. We left a little early (something that I never do) but I thought it pragmatic to avoid the crush given that Chelsea were winning 4-0 and I am not at my best.
No news from North Wales where Kitten's mum is still waiting to see a proper doctor (Monday morning).
Onto matters of health....
Mine and Notoplip's joke is that you haven't had proper cancer until you have been on your hands and knees being sick and bleeding from "where the sun doesn't shine". That's the most prosaic about our rather differently phrased joke.
I am pleased to announce that I have achieved all three but not all at once. I will leave that honour to someone who is "harder" than me as I am now ready to move on, or as Kasabian would say
"Move on, You got to move on
I'm gonna get you real good
So you can shake on"
My oesophagus is feeling a little less frazzled. Another three milkshakes today and I think I will try something like soup again tomorrow.
Things are turning up now and I hope that the pathway that I am on is the pathway to recovery. I hope that the fire of the pain that I have been feeling is the fire of healing. The fire of cauterisation.
Also, no morphine today.
No news from North Wales where Kitten's mum is still waiting to see a proper doctor (Monday morning).
Onto matters of health....
Mine and Notoplip's joke is that you haven't had proper cancer until you have been on your hands and knees being sick and bleeding from "where the sun doesn't shine". That's the most prosaic about our rather differently phrased joke.
I am pleased to announce that I have achieved all three but not all at once. I will leave that honour to someone who is "harder" than me as I am now ready to move on, or as Kasabian would say
"Move on, You got to move on
I'm gonna get you real good
So you can shake on"
My oesophagus is feeling a little less frazzled. Another three milkshakes today and I think I will try something like soup again tomorrow.
Things are turning up now and I hope that the pathway that I am on is the pathway to recovery. I hope that the fire of the pain that I have been feeling is the fire of healing. The fire of cauterisation.
Also, no morphine today.
A Medical Perspective - No more morphine.
What has become clear to me over the last few days is that the oral morphine and the milkshakes to not mix well in the system.
I have had to separate the intake of these two elements and it is the morphine intake that has lessened.
Of course I have been concerned that I will put myself into a position where I am vulnerable to being hit with some really bad pain, but things seem to be easing. It is better to keep down the food I am taking on board than worry about the pain too much, but conversely I can't be in too much pain or I can't eat.
Fortunately, I seem to be getting the shakes down and I don't think that I had any morphine at all yesterday (it was either that or a single dose).
So I will do without today and see where that takes me.
How one feels changes every day. The situation is very dynamic and it pays to realise that.
I have had to separate the intake of these two elements and it is the morphine intake that has lessened.
Of course I have been concerned that I will put myself into a position where I am vulnerable to being hit with some really bad pain, but things seem to be easing. It is better to keep down the food I am taking on board than worry about the pain too much, but conversely I can't be in too much pain or I can't eat.
Fortunately, I seem to be getting the shakes down and I don't think that I had any morphine at all yesterday (it was either that or a single dose).
So I will do without today and see where that takes me.
How one feels changes every day. The situation is very dynamic and it pays to realise that.
A Busy Weekend
I took Huffty to football yesterday and his team had a moral boosting 8-0 win. Billy the Fish has twins a few years old than Notoplip's Sonic and my boy. Both of his twins (boy and girl) play competitive football and he came down to see how our boys were doing. It was pleasing that both boys played very well. I also received a call from Gandalf giving me an update on Swelly Belly during the match.
Elsewhere there was a little chaos as Cymraes and Grumpy's journey to London was severely hampered by an overnight accident on the M4 that had closed part of the motorway. Their two and a half hour journey metamorphosed into a six hour plus journey, which was not much fun for them at all.
Fortunately for me Billy the Fish was on hand to give me a lift home after football whilst Werthers took Huffty onto his afternoon party with their son Super Striker.
I had an appointment planned with the mad Canadian osteopath for 2:15pm. My parents were scheduled to take me to it but hadn't arrived, so I went under my own steam and took the train. What an enjoyable walk up hill to the station. Confirmation that I have absolutely no puff at all.
My dad was able finish his journey with a pint whilst they waited for me to finish my appointment, so at least his miserable journey had a happy ending.
Meanwhile in North Wales we are no further forward in knowing what is wrong with Kitten's mum because they have to wait for the lab and for a doctor. Apparently, hospitals don't have doctors on the weekend.
There is a contrast in the treatment that I receive from the NHS and normal experiences. Swelly Belly had to go to a different country to have her baby because of lack of facilities and Kitten's mother is waiting all weekend to see a doctor!
Kitten and Boogle are settled in North Wales now though and Cymraes and Grumpy are settled here.
Meanwhile the event of Huffty's weekend is whether or not I will be able to take him to Chelsea vs Blackpool today. Of course I shouldn't go because I haven't got the strength that I was born with, but food and the journey back are the only obstacles. On the way back everyone piles out together and I will be too hungry to hang around so the tube journey is very difficult.
I managed another three 500 calorie shakes yesterday and survive what was a busy physical day by my current standards though I wouldn't describe the experience as pleasant.
Elsewhere there was a little chaos as Cymraes and Grumpy's journey to London was severely hampered by an overnight accident on the M4 that had closed part of the motorway. Their two and a half hour journey metamorphosed into a six hour plus journey, which was not much fun for them at all.
Fortunately for me Billy the Fish was on hand to give me a lift home after football whilst Werthers took Huffty onto his afternoon party with their son Super Striker.
I had an appointment planned with the mad Canadian osteopath for 2:15pm. My parents were scheduled to take me to it but hadn't arrived, so I went under my own steam and took the train. What an enjoyable walk up hill to the station. Confirmation that I have absolutely no puff at all.
My dad was able finish his journey with a pint whilst they waited for me to finish my appointment, so at least his miserable journey had a happy ending.
Meanwhile in North Wales we are no further forward in knowing what is wrong with Kitten's mum because they have to wait for the lab and for a doctor. Apparently, hospitals don't have doctors on the weekend.
There is a contrast in the treatment that I receive from the NHS and normal experiences. Swelly Belly had to go to a different country to have her baby because of lack of facilities and Kitten's mother is waiting all weekend to see a doctor!
Kitten and Boogle are settled in North Wales now though and Cymraes and Grumpy are settled here.
Meanwhile the event of Huffty's weekend is whether or not I will be able to take him to Chelsea vs Blackpool today. Of course I shouldn't go because I haven't got the strength that I was born with, but food and the journey back are the only obstacles. On the way back everyone piles out together and I will be too hungry to hang around so the tube journey is very difficult.
I managed another three 500 calorie shakes yesterday and survive what was a busy physical day by my current standards though I wouldn't describe the experience as pleasant.
Saturday, 18 September 2010
Swelly Belly has Baby Boy
That's all I know so far but congratulations to Swelly, husband Gee and the proud grandparents Gandalf and Bee.
Since originally posting Gandalf rang and told me that the baby is 6lb 5oz. Clearly a good weight for a baby that is a few weeks premature.
Since originally posting Gandalf rang and told me that the baby is 6lb 5oz. Clearly a good weight for a baby that is a few weeks premature.
Friday, 17 September 2010
Team Swordfish
As soon as Kitten found out about her mother's condition there was support for her parents (her brother "Mad4it" is there) and Kitten is on her way first thing tomorrow morning. There is support for me from my mother and father, who are both arriving tomorrow morning but also from a number of others who have offered help and have been in contact straight away.
It articulates the point that I am not facing this illness alone and have a strong team and wealth of help to draw on.
In some ways illness is a funny thing because it takes away the barriers that stop people from expressing how much that they care for each other.
I am glad and proud to be part of a group of people who have a lot of love to share and, assuming that I come through this illness in one piece, it will be because of "team swordfish".
It articulates the point that I am not facing this illness alone and have a strong team and wealth of help to draw on.
In some ways illness is a funny thing because it takes away the barriers that stop people from expressing how much that they care for each other.
I am glad and proud to be part of a group of people who have a lot of love to share and, assuming that I come through this illness in one piece, it will be because of "team swordfish".
Kitten Needs Two Pairs of Hands
Kitten will be travelling with Boogle to North Wales first thing tomorrow morning to see her mum and to help and support her dad.
I am on the up at the moment as I am able to get these protein shakes in at 500 calories a pop.
My mam will be hurtling up the M4 tomorrow from South Wales to take care of the Huffty and I. I am not sure yet whether or not we will also have the pleasure of my father's company.
So, it will be off to football for Huffty and I tomorrow morning and then Werthers will kindly be taking Huffty to his afternoon party with her son Super Striker.
Messy, but all workable.
Thursday, 16 September 2010
Swelly Belly to Be Less Swelly
Roxy and Swelly Belly are both cousins. Children of my mother's sister (Lindylu) and brother (Gandalf).
Roxy had her baby at the beginning of September, Swelly Belly was not due until next month.
Before continuing here I should mention that Swelly Belly is not referred to in that manner because of her current status. Rather it is because of her coeliac condition and the reaction of her abdomen when she comes into contact with gluten.
Anyway, onto the salient point which is that Swelly Belly will be induced today some five weeks early. I wish her well as, I am sure, does everyone else. We await further news.
There is an angle on the news as Swelly Belly has been unceremoniously removed from her native Wales and taken to hospital in Worcester in order to find a suitable bed for her and the baby!
Good luck Swelly Belly.
Roxy had her baby at the beginning of September, Swelly Belly was not due until next month.
Before continuing here I should mention that Swelly Belly is not referred to in that manner because of her current status. Rather it is because of her coeliac condition and the reaction of her abdomen when she comes into contact with gluten.
Anyway, onto the salient point which is that Swelly Belly will be induced today some five weeks early. I wish her well as, I am sure, does everyone else. We await further news.
There is an angle on the news as Swelly Belly has been unceremoniously removed from her native Wales and taken to hospital in Worcester in order to find a suitable bed for her and the baby!
Good luck Swelly Belly.
Five Dollar Shake
Now that I am getting into my calorie redeeming milkshakes this clip from Pulp Fiction seems very appropriate, not least because John Travolta's character is high on heroine (substitute me and morphine).
The video is very quiet, so you will have to turn it up, but don't if you are of a sensitive disposition as it contains bad language.
The video is very quiet, so you will have to turn it up, but don't if you are of a sensitive disposition as it contains bad language.
Bottoming Out? Good News Continues
Perhaps the best news of the last few days is that I am able to drink water with greater ease. As I was more or less relying on some of my foods for fluids this wasn't a good situation.
The best news is that I managed another 500 calorie nutritional shake this morning and am just about to have another.
There is virtually nothing that I can eat at the moment but that doesn't matter if I can get these shakes in until things ease.
With calories going in I am obviously going to feel an awful lot better physically.
Looks like I am turning the corner, though perhaps more like the QE2 than a motorbike!
The best news is that I managed another 500 calorie nutritional shake this morning and am just about to have another.
There is virtually nothing that I can eat at the moment but that doesn't matter if I can get these shakes in until things ease.
With calories going in I am obviously going to feel an awful lot better physically.
Looks like I am turning the corner, though perhaps more like the QE2 than a motorbike!
Wednesday, 15 September 2010
Weight Lifted off my Shoulders
The title serves as both metaphor and fact.
I've lost plenty of weight from my shoulders but yesterday's meeting has rid me of of the battle to keep focusing on the weight.
Kitten and I have had to constantly experiment with food I can eat due to the worsening of the condition and the associated reduction in an already limited range.
Feeling that the pressure is off is a huge relief. At the moment I am trying to drink one of the new protein shakes they have given me. It is difficult because it is slightly acidic and does hurt but it also contains 500 calories. It is also not outright vile,which the other ones were.
I will be in a good place if I know that I can get something down which contains that many calories and so many essential supplements.
...........Well, it took me about an hour and a half but 500 good calories. That's something to supplement and fall back on.
I've lost plenty of weight from my shoulders but yesterday's meeting has rid me of of the battle to keep focusing on the weight.
Kitten and I have had to constantly experiment with food I can eat due to the worsening of the condition and the associated reduction in an already limited range.
Feeling that the pressure is off is a huge relief. At the moment I am trying to drink one of the new protein shakes they have given me. It is difficult because it is slightly acidic and does hurt but it also contains 500 calories. It is also not outright vile,which the other ones were.
I will be in a good place if I know that I can get something down which contains that many calories and so many essential supplements.
...........Well, it took me about an hour and a half but 500 good calories. That's something to supplement and fall back on.
The Bigger Picture - Thanks and Praise
Anyone reading the blog regularly over the last month could be forgiven for thinking that I have a negative outlook on my condition. In fact the opposite is true. Hopefully the radiotherapy and chemotherapy are doing their jobs and will give rise to good news when I reviewed to see whether I am operable this December.
I remember when I was diagnosed there was an almost universal opinion from family and friends that, if anyone was capable of getting through this then it would be me. That kind of opinion is flattering and it is good news to hear that others have faith in you. On the other hand it won't stop a cancer that it well developed from progressing. This is already known after what looked like excellent progress in the first stages.
I remember talking with Kitten during the early stages and saying that I felt I could deal with the illness but that I knew there would be a time where I would be severely challenged and would be reliant on others to lift my spirit. I always imagined this to be in the time immediately after operation. In reality it has proved to be over an elongated period since the middle of August.
Over this time I have remained head-strong, focused and determined but I have also been dragged down by the disease and its treatment. Over this period there has been an outpouring of well-wishing and so many offers of help that it has been somewhat overwhelming.
During the last few weeks things have been kept very tight here. It has just been Kitten, the children and me, a visit from my mother, the hospital and the occasional contact with the outside world. That has reflected the difficulties we have been through. However, the overall "positive vibe" that has been surrounding us from everyone has been extremely uplifting. Those who I know care, but are not usually vocal have been vocal. Those who are normally demonstrative have been "chomping at the bit" to help. Those who have the daily "chore" of looking after me have been overwhelmingly gracious.
There has also been help and generosity with the children's activities where others have stepped in to help to cover for my absence. Gifts of time, as well as thoughtful physical gifts.
There are too many people to thank and I will refrain from making individual reference because otherwise it will turn into a boring Oscar speech and I would not like to miss anyone, but I will extend my heartfelt thanks to everyone who has at sometime had me in their thoughts.
I am doing my level best to survive and transcend this illness and arriving at the point where the world's biggest glass of champagne (metaphorical or otherwise) descends into the journey.
I remember when I was diagnosed there was an almost universal opinion from family and friends that, if anyone was capable of getting through this then it would be me. That kind of opinion is flattering and it is good news to hear that others have faith in you. On the other hand it won't stop a cancer that it well developed from progressing. This is already known after what looked like excellent progress in the first stages.
I remember talking with Kitten during the early stages and saying that I felt I could deal with the illness but that I knew there would be a time where I would be severely challenged and would be reliant on others to lift my spirit. I always imagined this to be in the time immediately after operation. In reality it has proved to be over an elongated period since the middle of August.
Over this time I have remained head-strong, focused and determined but I have also been dragged down by the disease and its treatment. Over this period there has been an outpouring of well-wishing and so many offers of help that it has been somewhat overwhelming.
During the last few weeks things have been kept very tight here. It has just been Kitten, the children and me, a visit from my mother, the hospital and the occasional contact with the outside world. That has reflected the difficulties we have been through. However, the overall "positive vibe" that has been surrounding us from everyone has been extremely uplifting. Those who I know care, but are not usually vocal have been vocal. Those who are normally demonstrative have been "chomping at the bit" to help. Those who have the daily "chore" of looking after me have been overwhelmingly gracious.
There has also been help and generosity with the children's activities where others have stepped in to help to cover for my absence. Gifts of time, as well as thoughtful physical gifts.
There are too many people to thank and I will refrain from making individual reference because otherwise it will turn into a boring Oscar speech and I would not like to miss anyone, but I will extend my heartfelt thanks to everyone who has at sometime had me in their thoughts.
I am doing my level best to survive and transcend this illness and arriving at the point where the world's biggest glass of champagne (metaphorical or otherwise) descends into the journey.
Tuesday, 14 September 2010
Reassurance - Things are Normal
When attending clinic it is not unusual to see a different registrar each time. I was lucky with my initial chemotherapy where we developed a consistency of usually being seen by the same doctor.
The level of experience can vary between the registrars and last time, although the doctor was thorough, thoughtful and informative I thought that some of her comments were a little naive.
In particular I though that the comment about expecting me to be eating between 3 and 4 thousand calories a day with a red raw oesophagus to be a little ambitious.
My thoughts were backed up by my meeting today. As well as being seen by yet another registrar there was also one of the cancer specialist nurses present. I took them through exactly where I am at and explained that even swallowing my own saliva could be excruciating at time.
I told them that I didn't mind dealing with the pain because it was anticipated that it would only be temporary but want to deal with concerns that the hospital had expressed about weight loss.
They sided with the viewpoint that I had previously held which was just to get through the current phase and then concentrate on getting the weight back on.
The cancer nurse added weight by say that my insides would just be a raw mess at the moment, so my discomfort was normal and understandable.
Apparently more oral morphine is the way to go. It is the strongest soluble thing at my disposal.
They have also given me some different protein shakes to try. These ones should be less acidic.
All this is much more assuring. It is better to know that my discomfort is not a wild deviation from the norm and that I can drop the mindset of battling with my weight. I will eat what I can for now and be done with it.
The level of experience can vary between the registrars and last time, although the doctor was thorough, thoughtful and informative I thought that some of her comments were a little naive.
In particular I though that the comment about expecting me to be eating between 3 and 4 thousand calories a day with a red raw oesophagus to be a little ambitious.
My thoughts were backed up by my meeting today. As well as being seen by yet another registrar there was also one of the cancer specialist nurses present. I took them through exactly where I am at and explained that even swallowing my own saliva could be excruciating at time.
I told them that I didn't mind dealing with the pain because it was anticipated that it would only be temporary but want to deal with concerns that the hospital had expressed about weight loss.
They sided with the viewpoint that I had previously held which was just to get through the current phase and then concentrate on getting the weight back on.
The cancer nurse added weight by say that my insides would just be a raw mess at the moment, so my discomfort was normal and understandable.
Apparently more oral morphine is the way to go. It is the strongest soluble thing at my disposal.
They have also given me some different protein shakes to try. These ones should be less acidic.
All this is much more assuring. It is better to know that my discomfort is not a wild deviation from the norm and that I can drop the mindset of battling with my weight. I will eat what I can for now and be done with it.
Taking Action
Weight loss and eating dysfunction has become too severe so I am off up to the hospital clinic to get their view on the state of the nation.
Monday, 13 September 2010
Disability Snobbery
When I was coming back from the Huffty's football on Saturday morning, I was struggling to put one foot in front of the other.
I had elected to go back to the car ahead of Kitten and the kids as I knew that the short walk would be tough.
I was only yards from the car when a lady, in her sixties, went passed me on here disability scooter. As she went passed me she said something that wasn't very nice. I didn't know what she had said but could tell roughly want the contents were by her tone.
I asked her what she had said and she didn't stop but, as she moved on she said "Why don't you take your time, you couldn't walk any slower if you wanted to. I'll just wait forever to get past".
I hadn't even seen or heard her as she was behind me. Not even a polite "excuse me please".
At that point karma took control of my tongue. I won't repeat what I said, but I will say that I didn't swear and I didn't say anything that wasn't fact. Did she even stop? No.
It's amazing that such people exist. Disabled themselves but full of assumptions.
Suffice to say I feel no remorse for venting my spleen, though I wouldn't have if I wasn't struggling so much. I would have just let it go. I am quicker with the spoken word than the written, so I hope that I left her something to think over.
I had elected to go back to the car ahead of Kitten and the kids as I knew that the short walk would be tough.
I was only yards from the car when a lady, in her sixties, went passed me on here disability scooter. As she went passed me she said something that wasn't very nice. I didn't know what she had said but could tell roughly want the contents were by her tone.
I asked her what she had said and she didn't stop but, as she moved on she said "Why don't you take your time, you couldn't walk any slower if you wanted to. I'll just wait forever to get past".
I hadn't even seen or heard her as she was behind me. Not even a polite "excuse me please".
At that point karma took control of my tongue. I won't repeat what I said, but I will say that I didn't swear and I didn't say anything that wasn't fact. Did she even stop? No.
It's amazing that such people exist. Disabled themselves but full of assumptions.
Suffice to say I feel no remorse for venting my spleen, though I wouldn't have if I wasn't struggling so much. I would have just let it go. I am quicker with the spoken word than the written, so I hope that I left her something to think over.
It's here
The time every father dreads; when his daughter likes pop music and thinks that she can sing.
She's upstairs, in the bath and murdering Duffy's "Mercy" so badly, so loudly, and so "warbly" that I just nearly called the police.
I know who is begging for mercy around here at the moment and it isn't the vocalist :-)
She's upstairs, in the bath and murdering Duffy's "Mercy" so badly, so loudly, and so "warbly" that I just nearly called the police.
I know who is begging for mercy around here at the moment and it isn't the vocalist :-)
Things Get Really Tough
I've had a few days on the oral morphine to see whether consistency of taking it would provide pain relief. It does help with pain in general and it also helps in making sure that I sleep soundly. However, it's of absolutely no use for its primary function, which is to help with pain when I am eating.
The last couple of days have been a nightmare for eating because the problem has got so bad that the foods I was relying on for calorific value are now too painful to eat. I am not moaning here because I don't mind how much pain I have to endure as long as I come out in one piece at the end of the "sausage machine. I also have one more trick up the sleeve which is to use a heavy duty antacid solution that they gave me months ago. I have started on this today.
If that does not ease things then I will have to resort to a feeding line as the weight is falling off me again.
Whatever it takes to get me through this period when the oesophagus is inflamed is all that matters but I am now really looking forward to some calmer waters. I have really dug in over the last month and now feel that I deserve some respite. I also feel that my little family deservez it too.
The last couple of days have been a nightmare for eating because the problem has got so bad that the foods I was relying on for calorific value are now too painful to eat. I am not moaning here because I don't mind how much pain I have to endure as long as I come out in one piece at the end of the "sausage machine. I also have one more trick up the sleeve which is to use a heavy duty antacid solution that they gave me months ago. I have started on this today.
If that does not ease things then I will have to resort to a feeding line as the weight is falling off me again.
Whatever it takes to get me through this period when the oesophagus is inflamed is all that matters but I am now really looking forward to some calmer waters. I have really dug in over the last month and now feel that I deserve some respite. I also feel that my little family deservez it too.
Sunday, 12 September 2010
Moments of Truth
There have been many connections for me over the last week with elements of my past.
In a recent post I talked about my nan who was cherished by all of her family and by a wide circle of friends. My nan (my mother's mother) sadly passed away close to six and a half years ago but it feels like a lot less than that. Today is also the 39th anniversary of when her husband, my grandfather, who was also seriously ill at a young age and passed away. I was mindful of the fact that Kitten has become my carer in a similar way as my nan was to my grandfather for many years. I remember that he also often ate the same things with mashed potato and cooked ham being menu regulars. We also (Tricky Crow and I) used to peel and cut apples for him and our honour was to take his lunch through to him in his room
This week has been notable also because news of my illness has also filtered out to someone who was a friend of mine through much of my school experience and with whom I have recently lost touch. It was good to hear from "Mr Ibanez" and shocking to realise that his eldest is 19 and off to university.
I have also just had a difficult conversation with a close family member about my condition. My thrust was how it can affect different people in different ways and that it is important to understand that, in some ways, it is easier for me than for others. I have a constant but continually changing picture, I am optimistic by nature and. I also feel that I am helped by an underlying philosophy that I associate strength with being a willingness to adapt and change rather than an exercise of power resulting in a clear cut win for the defender / aggressor. My philosphy is similar to that of the boxer who believes it to be just as important to be skilled in avoiding punches and being accurate with his work as well as having a knockout punch and a strong chin.
All of these things and the birth of Roxy's child reminding me of a simple rhyming poem that I wrote about realisations, acceptance and the power of drawing from memories of dear ones that we have lost.
At this point it is equally poignant to mention that a good friend and colleague of mine "Hoo Haa" got married yesterday. Now that really is a moment of truth and I was somewhat disappointed that my current problems stopped Kitten and me from attending. Anyway my congratulations to him and his good lady wife. As Hoo Haa is a staunch Englisman it is good to see that he has decided to share his life with a lady of some Welsh roots. Well done Hoo Haa, a good choice.
The poem's reference to a pearl perhaps has extra significance because it is a meaning that often attributed to the name which both my nan and my daughter share. It is also sometimes given the meaning "strong" or "great" My daugther was named after my nan.
In a recent post I talked about my nan who was cherished by all of her family and by a wide circle of friends. My nan (my mother's mother) sadly passed away close to six and a half years ago but it feels like a lot less than that. Today is also the 39th anniversary of when her husband, my grandfather, who was also seriously ill at a young age and passed away. I was mindful of the fact that Kitten has become my carer in a similar way as my nan was to my grandfather for many years. I remember that he also often ate the same things with mashed potato and cooked ham being menu regulars. We also (Tricky Crow and I) used to peel and cut apples for him and our honour was to take his lunch through to him in his room
This week has been notable also because news of my illness has also filtered out to someone who was a friend of mine through much of my school experience and with whom I have recently lost touch. It was good to hear from "Mr Ibanez" and shocking to realise that his eldest is 19 and off to university.
I have also just had a difficult conversation with a close family member about my condition. My thrust was how it can affect different people in different ways and that it is important to understand that, in some ways, it is easier for me than for others. I have a constant but continually changing picture, I am optimistic by nature and. I also feel that I am helped by an underlying philosophy that I associate strength with being a willingness to adapt and change rather than an exercise of power resulting in a clear cut win for the defender / aggressor. My philosphy is similar to that of the boxer who believes it to be just as important to be skilled in avoiding punches and being accurate with his work as well as having a knockout punch and a strong chin.
All of these things and the birth of Roxy's child reminding me of a simple rhyming poem that I wrote about realisations, acceptance and the power of drawing from memories of dear ones that we have lost.
At this point it is equally poignant to mention that a good friend and colleague of mine "Hoo Haa" got married yesterday. Now that really is a moment of truth and I was somewhat disappointed that my current problems stopped Kitten and me from attending. Anyway my congratulations to him and his good lady wife. As Hoo Haa is a staunch Englisman it is good to see that he has decided to share his life with a lady of some Welsh roots. Well done Hoo Haa, a good choice.
The poem's reference to a pearl perhaps has extra significance because it is a meaning that often attributed to the name which both my nan and my daughter share. It is also sometimes given the meaning "strong" or "great" My daugther was named after my nan.
Saturday, 11 September 2010
Proud Dad Day
"The Huffty" has been practising his football skills on a Saturday morning for a little over two years. For the last couple of months he has been getting ready to play his first competitive game in the Little League and the team also features plenty of his mates.
The team is run by Notoplip, who ended his playing days at his local team and subsequently managed them. In fact if you were to open up Notoplip you would probably find a football inside there somewhere. I've known him for close on twenty years and football has always been close to his heart. No surprises then that his son, Sonic is a pivotal member of the team.
I have connections with the club as well. As I have mentioned before, I have been on several of the end of season "football tours" despite not having kicked a ball in anger since I was at junior school. The fact that I know plenty of the people at the club from my socialising and Kitten knows lots of the mums and dads from The Hufftys team makes the whole experience very easy going.
It was great watching the kids play their first match and there was almost as much pleasure for me in watching Notoplip pace up and down barking instruction looking closer to heart failure than after a night out with the boys and a large donor in hand.
For me it was hard work just standing there, but worth the effort.
Everyone showed up and Boogle's ice-skating was postponed until this afternoon so that Kitten could come too.
The boys looked like they would get slaughtered to start with but Notoplip got them together at half-time and sorted them out. At this stage there is an overriding sense that the kids should just have fun, but you also don't want them to take a beating on their first outing because their confidence is fragile.
Anyway, whilst they were considerably smaller than the other team they were fitter and that shone through in the second half. Eventually it also paid dividends with a superb free-kick equaliser from "The Tank".
It's not my intention to turn my blog in a match day report of my son's football but, as it was their first game, it was good to see all those cold Saturday winter mornings producing an end result.
Everyone left with a smile on their face.
The team is run by Notoplip, who ended his playing days at his local team and subsequently managed them. In fact if you were to open up Notoplip you would probably find a football inside there somewhere. I've known him for close on twenty years and football has always been close to his heart. No surprises then that his son, Sonic is a pivotal member of the team.
I have connections with the club as well. As I have mentioned before, I have been on several of the end of season "football tours" despite not having kicked a ball in anger since I was at junior school. The fact that I know plenty of the people at the club from my socialising and Kitten knows lots of the mums and dads from The Hufftys team makes the whole experience very easy going.
It was great watching the kids play their first match and there was almost as much pleasure for me in watching Notoplip pace up and down barking instruction looking closer to heart failure than after a night out with the boys and a large donor in hand.
For me it was hard work just standing there, but worth the effort.
Everyone showed up and Boogle's ice-skating was postponed until this afternoon so that Kitten could come too.
The boys looked like they would get slaughtered to start with but Notoplip got them together at half-time and sorted them out. At this stage there is an overriding sense that the kids should just have fun, but you also don't want them to take a beating on their first outing because their confidence is fragile.
Anyway, whilst they were considerably smaller than the other team they were fitter and that shone through in the second half. Eventually it also paid dividends with a superb free-kick equaliser from "The Tank".
It's not my intention to turn my blog in a match day report of my son's football but, as it was their first game, it was good to see all those cold Saturday winter mornings producing an end result.
Everyone left with a smile on their face.
Friday, 10 September 2010
No Pain, No Gain
I've woken up this morning to an intensification of the pain that I was experiencing yesterday though in some respects things are better.
There is more continual pain, which the morphine can deal with and there is slightly less pain when I am eating. That's good because it is only when I am eating that the pain becomes a problem.
What is also good is that the pain is sharply focused on the main tumour area. If you feel the point at the centre bottom of your rib cage that is where it comes from i.e. the solar plexus area. The pain pumps out in all directions from there. Why is that good? Welll simply because I assume that the radiotherapy is getting on with what it is supposed to be doing and I signed up for it without reservations.
On a humorous note, I am still hugely drawn to fruit based foods but cannot eat them (not even my beloved trifle). The pain from acidic foods is immediate and uncompromising but I can't stop myself from trying.
There are some tinned apricots opened in the fridge and I poured a little juice from the apricot bowl into a glass this morning just to see if I could handle it. The results reminded me of this old Kit Kat advert. The sound on the video is quiet so turn your volume up to hear the moth.
There is more continual pain, which the morphine can deal with and there is slightly less pain when I am eating. That's good because it is only when I am eating that the pain becomes a problem.
What is also good is that the pain is sharply focused on the main tumour area. If you feel the point at the centre bottom of your rib cage that is where it comes from i.e. the solar plexus area. The pain pumps out in all directions from there. Why is that good? Welll simply because I assume that the radiotherapy is getting on with what it is supposed to be doing and I signed up for it without reservations.
On a humorous note, I am still hugely drawn to fruit based foods but cannot eat them (not even my beloved trifle). The pain from acidic foods is immediate and uncompromising but I can't stop myself from trying.
There are some tinned apricots opened in the fridge and I poured a little juice from the apricot bowl into a glass this morning just to see if I could handle it. The results reminded me of this old Kit Kat advert. The sound on the video is quiet so turn your volume up to hear the moth.
Thursday, 9 September 2010
Looking Forward to Some Clear Space
Whilst I am shipping my fair share of discomfort at the moment I am treatment free and looking forward to when the current pain subsides.
I hope that in a few weeks I will be able to get back to a normal life for a little while. No scheduling the taking of tablets, no chemotherapy or radiotherapy and no low immune system to worry about.
That will bring a little freedom and more avenues in which it enjoy myself with the family. Maybe some swimming, food on the go the simple pleasures that we all take for granted. I am not one who is particularly fond of fizzy drinks but I would love to be able to have a coke, or a sprite, fanta or lemonade right now. When they are occasional they are very refreshing.
Most of all it would be good to grab a few days away. There's no possibility of getting abroad for medical reasons but even a few days in Britain will suit me and I would imagine the family very nicely. I mentioned the possibility of a break to Kitten the other day and she immediately imagined somewhere like Egypt, without considering the logistics. It would be rude to rob her of her dreams though.
Maybe next year.
I hope that in a few weeks I will be able to get back to a normal life for a little while. No scheduling the taking of tablets, no chemotherapy or radiotherapy and no low immune system to worry about.
That will bring a little freedom and more avenues in which it enjoy myself with the family. Maybe some swimming, food on the go the simple pleasures that we all take for granted. I am not one who is particularly fond of fizzy drinks but I would love to be able to have a coke, or a sprite, fanta or lemonade right now. When they are occasional they are very refreshing.
Most of all it would be good to grab a few days away. There's no possibility of getting abroad for medical reasons but even a few days in Britain will suit me and I would imagine the family very nicely. I mentioned the possibility of a break to Kitten the other day and she immediately imagined somewhere like Egypt, without considering the logistics. It would be rude to rob her of her dreams though.
Maybe next year.
General State of Play
Since yesterday I have had a lot of pain which trying to eat. The pain is there all the time and is a product of the radiotherapy, but is only a problem when I eat.
I have been taking oral morphine to try and abate it but it doesn't even begin to touch it. I will be taking it consistently for a while so that it has an opportunity to work within the system but I am now concerned that I am not getting enough calories in. When I do get the calories in I am not able to keep them in, so this is not a good situation.
This should only be a temporary state of affairs whilst the inflammation from the treatment persists so I may consider the final avenue that is open to me, which is to have a feed line attached to take nutrition intravenously. This is something that may happen post operation anyway and it would only be for a short while.
I keep on pushing and it is on terrain like this where I fight hard to assert myself.
Not the most uplifting of facts, I know, but it is character building having to fight against the pain with each small mouthful when you are supposed to be consuming 3-4000 calories a day!
On a general note I feel pretty much OK other than this obvious hinderance.
I have been taking oral morphine to try and abate it but it doesn't even begin to touch it. I will be taking it consistently for a while so that it has an opportunity to work within the system but I am now concerned that I am not getting enough calories in. When I do get the calories in I am not able to keep them in, so this is not a good situation.
This should only be a temporary state of affairs whilst the inflammation from the treatment persists so I may consider the final avenue that is open to me, which is to have a feed line attached to take nutrition intravenously. This is something that may happen post operation anyway and it would only be for a short while.
I keep on pushing and it is on terrain like this where I fight hard to assert myself.
Not the most uplifting of facts, I know, but it is character building having to fight against the pain with each small mouthful when you are supposed to be consuming 3-4000 calories a day!
On a general note I feel pretty much OK other than this obvious hinderance.
Wednesday, 8 September 2010
Time to Unwrap the Oral Morphine
I have had oral morphine available to me for a couple of weeks. The idea is to help with the pain and, principally, to help me eat.
I have shied away from it because my instinct told me that it would make me feel sick. It is one thing getting food down but it is just as hard to keep it down.
Today showed that the next couple of weeks could be tough. The pain from the radiotherapy has ratcheted up and the pain during eating has magnified accordingly.
So, I have taken it in a small dose for the first time.
I guess that it must be time to "chillax" on the sofa humming the New Seekers "I'd like to teach the world to sing".
I have shied away from it because my instinct told me that it would make me feel sick. It is one thing getting food down but it is just as hard to keep it down.
Today showed that the next couple of weeks could be tough. The pain from the radiotherapy has ratcheted up and the pain during eating has magnified accordingly.
So, I have taken it in a small dose for the first time.
I guess that it must be time to "chillax" on the sofa humming the New Seekers "I'd like to teach the world to sing".
Tuesday, 7 September 2010
Roxy Fans My Pride
Cymraes told me today that Roxy has given her baby's middle name after the first element of mine (and no it is not "Sword").
That makes me feel proud on different levels. It is flattering in itself, but given that Roxy is my goddaughter it makes me feel that my warmth towards Roxy is extended into the next generation.
Roxy's mother, Lindylu, was close to me when I was a child. She is the youngest of my mother's brothers and sisters and was omnipresent when I visited my Nan as a child, as she was still at home. She also used to babysit for my sister and I on a regular basis before our family moved to London.
That family bond has always been strong and has been fuelled by us staying regularly at their house on trips back to Wales before my parents moved back. We used to stay at the "Butcher's" too.
My earliest recollection of an "event" involving Lindylu was when she threw a teenage tantrum with her knitting and my nan took it off her and threw it into the fire.
My reaction (as a four year old) was to go up behind my nan and bite her leg. I drew blood. This was despite the fact that I cherished my nan.
My nan exacted revenge by walloping me with the "boiler" stick. You will have to remember the days before automatic washing machines to understand that one.
Parenting was rather different in those days though I clearly got what I deserved!
All this action took place in my nan's house, which is now Lindylu and Yorkshire Boy's house and also where Roxy is currently based.
The house was at the foundation of what was a very happy childhood start to my life and I hope that it provides a good start for Roxy's new arrival too.
That makes me feel proud on different levels. It is flattering in itself, but given that Roxy is my goddaughter it makes me feel that my warmth towards Roxy is extended into the next generation.
Roxy's mother, Lindylu, was close to me when I was a child. She is the youngest of my mother's brothers and sisters and was omnipresent when I visited my Nan as a child, as she was still at home. She also used to babysit for my sister and I on a regular basis before our family moved to London.
That family bond has always been strong and has been fuelled by us staying regularly at their house on trips back to Wales before my parents moved back. We used to stay at the "Butcher's" too.
My earliest recollection of an "event" involving Lindylu was when she threw a teenage tantrum with her knitting and my nan took it off her and threw it into the fire.
My reaction (as a four year old) was to go up behind my nan and bite her leg. I drew blood. This was despite the fact that I cherished my nan.
My nan exacted revenge by walloping me with the "boiler" stick. You will have to remember the days before automatic washing machines to understand that one.
Parenting was rather different in those days though I clearly got what I deserved!
All this action took place in my nan's house, which is now Lindylu and Yorkshire Boy's house and also where Roxy is currently based.
The house was at the foundation of what was a very happy childhood start to my life and I hope that it provides a good start for Roxy's new arrival too.
Radiotherapy Finishes (A Day Earlier Than I Thought)
Today was my last radiotherapy appointment. This was a day earlier than anticipated because I have an appointment scheduled for tomorrow. However, I had an extra appointment fitted in on the August Bank Holiday, so that means that I have completed my thirty days of treatment.
So, not only is it my last day of radiotherapy but it is also my last day of chemotherapy tablets too.
Stricly speaking the intravenous cycle of chemotherapy that I had two weeks ago is still working away but, from an application point of view, my treatment is finished.
So, not only is it my last day of radiotherapy but it is also my last day of chemotherapy tablets too.
Stricly speaking the intravenous cycle of chemotherapy that I had two weeks ago is still working away but, from an application point of view, my treatment is finished.
The Culminative Effects of Radiotherapy
I've already discussed at length the pain and inflammation side of the equation and I have touched on the tiredness that builds.
With only two more radiotherapy treatments ahead of me there is no angst or worry, I am dealing with a "known known" (as Donald Rumsfeld would say). To complete the picture it is worth mentioning that at the beginning of the radiotherapy process the body absorbs the treatment without any problem. How different people react to it will obviously depend on a number of factors. For me at the end of the process each treatment hammers me. I come out sore and energy sapped, so it is was a wise move to get my appointments schedule for end of the day. This means that I can function reasonably during the day and then just chill in the evening.
I am often to be found snoozing early evening, which means I am then slightly late in retiring.
On a positive note, whist eating and drinking is still very painful it is becoming noticeably more comfortable. Yesterday, I drank a whole glass of liquid (about 3/4 of a pint) in a reasonable time frame whereas, for the last two weeks, I have only been sipping occasionally during the day and not taking on anywhere near as much liquid as I should. I have been relying on soups and other liquid foods to give me the bare bones of what I need.
With only two more radiotherapy treatments ahead of me there is no angst or worry, I am dealing with a "known known" (as Donald Rumsfeld would say). To complete the picture it is worth mentioning that at the beginning of the radiotherapy process the body absorbs the treatment without any problem. How different people react to it will obviously depend on a number of factors. For me at the end of the process each treatment hammers me. I come out sore and energy sapped, so it is was a wise move to get my appointments schedule for end of the day. This means that I can function reasonably during the day and then just chill in the evening.
I am often to be found snoozing early evening, which means I am then slightly late in retiring.
On a positive note, whist eating and drinking is still very painful it is becoming noticeably more comfortable. Yesterday, I drank a whole glass of liquid (about 3/4 of a pint) in a reasonable time frame whereas, for the last two weeks, I have only been sipping occasionally during the day and not taking on anywhere near as much liquid as I should. I have been relying on soups and other liquid foods to give me the bare bones of what I need.
Monday, 6 September 2010
Facial Tumour "Kicks Up"
In my collection of tumours I have carried a benign facial tumour (haemangioma) for the last 16 years.
The Hair Loss video at the top of the screen (with the super imposed dreadlocks) probably gives the most accurate representation of it. In the bubbleworks video I am pulling a silly face, so it is accentuated.
For the most part the tumour is calm and does not present me with any worries, but it can "kick up" in periods where I am unwell.
It is very swollen at the moment. On par with as bad as I have seen it in several years, so I am monitoring it. I am assuming that it is just because my body is hammered at the moment and will ease when treatment finishes, but I could do without any significant complications.
More excuse to rest!
The Hair Loss video at the top of the screen (with the super imposed dreadlocks) probably gives the most accurate representation of it. In the bubbleworks video I am pulling a silly face, so it is accentuated.
For the most part the tumour is calm and does not present me with any worries, but it can "kick up" in periods where I am unwell.
It is very swollen at the moment. On par with as bad as I have seen it in several years, so I am monitoring it. I am assuming that it is just because my body is hammered at the moment and will ease when treatment finishes, but I could do without any significant complications.
More excuse to rest!
Sunday, 5 September 2010
Golf Humour
Falling asleep after lunch and some threatening showers has put my good intentions of getting out with the kids on the back burner. As I am in the middle of a cycle of chemotherapy I still have to be careful to avoid cold, coughs and such like. Kitten has taken then to the local theme park on their annual passes for the umpteenth time this year and they never seem to tire of it.
As she was leaving I had just got up and was flicking through the TV channels. I stumbled on one of these "couple want to buy a house in the country" type programs and there was a scene where they were taken on the local golf course, all of them rank beginners.
It made me flash back to my only experience of golf, which was funny in a cringe worthy sort of way.
Throughout my twenties, I resisted any impulse to get involved with golf though all my friends have at least flirted with it at some stage. I invested the same time in learning how to mix house music, culminating in a few years where I played out live on a regular basis.
Naturally, my mates tried to cajole me at various stages though, after a few attempts, they eased back and realised that it wasn't going to happen.
A few years ago Notoplip bought himself a new set of clubs. I think that he was using golf as a medium for touching base with customers on a more regular basis. Anyway he kindly offered and brought round his old set encouraging me to get involved. His angle was that it would simply be good if I could join the lads on the odd golfing day out.
Naturally, the clubs sat in my garage for quite some while until Kitten bought me a couple of vouchers for lessons at the local golfing range.
Even then it was a few months before I actioned them and off I went into the garage to retrieve a by now rather cobweb ridden golfing bag.
Anyone who has played golf at all will recognise that at any golfing centre whether driving range or top notch course people seem united in wanting to project a strong sense of golfing image. Even rank beginners often have the latest clothes and the latest look. This is something that amuses me, because whilst I am aware of the impact of image I feel quite scornful towards that sort of attitude.
When Billy the Fish and I used to train regularly at a well known middle class chain of gymnasiums in our 20s and early thirties we stood out as people who were training whilst a lot of people waltzed around chatting, showing off their latest mobile phones with all the women in full makeup and everyone seemingly in the latest Nike gear. Of course our "grunt and groan" approach was not the image that the health club was particularly trying to project but we were popular with the fitness instructors and a regular core of people because they could see that we were working and were interested in what we were actually doing.
So, I'm not one to feel the need to live up to a consensus of image and neither am I one to be intimidated by it. I do conform in what I consider to be appropriate circumstances and feel that I "brush up well" when I make an effort.
So there I was getting out of my car with a generously donated but now slightly tired set of golf clubs in my jeans and T-Shirt.
I confess to feeling slightly uncomfortable as I waited to meet my instructor. The feeling being as much a product of unfamiliarity with the process as much as anything else. Sure enough though, after a bit of a delay, a bloke dressed from head to toe in "the golf look" approached me and asked if I was "Mr Swordfish".
I was quite looking forward to the lesson as I thought that if I could master the basics of the game then I knew that my mates were not of a great standard so I could get out with them for a few beers. I seem to recall that I had recently given up playing live as a DJ and so I had a lot more free time on my hands that had previously been invested in listening to and working with new tunes.
The instructor looked my golf bag up and down and asked if they were my own clubs. I said that they were and that my mate had given them to me to get me started. I said that if I got he golf bug then I would go out and invest in my own set but I thought that I was in a good place to start with.
He suggested that we started with a six iron, or at least that is what I recall. Then there was the moment that made me decide that perhaps golfing was not for me; a sign from the gods.
He pulled the club out of the bag and took the club by handle and exclaimed "Oh, it's all sticky".
Sure enough there was some kind of evil looking residue on the end of the handle, sort of brown and oily and gooey.
I really don't know what it was, or where it came from. Obviously there was something in the bottom of the bag but what it was or how it got there I couldn't tell you.
Anyone who has seen the old sitcom "The Good Life" with Penelope Keith, Paul Eddington, Richard Briers and Felicity Kendall will know that I felt like Richard Briers character Tom at that moment. Reminiscent of him feeling inadequate in front of Jerry's well heeled business associates I decided to play with "a straight bat" and asked the instructor whether he had anything to wipe the handle with.
He didn't.
So there I was with the golfing instructor, clearly dressed up to impress the ladies and anyone else who cared to notice. He was stooped and wiping the club handle back and forth along his perfect piece of artificial grass so that I could begin my lesson.
He probably hasn't experienced a similar event since. I also seem to recall that we stuck with the same club throughout the lesson.
As she was leaving I had just got up and was flicking through the TV channels. I stumbled on one of these "couple want to buy a house in the country" type programs and there was a scene where they were taken on the local golf course, all of them rank beginners.
It made me flash back to my only experience of golf, which was funny in a cringe worthy sort of way.
Throughout my twenties, I resisted any impulse to get involved with golf though all my friends have at least flirted with it at some stage. I invested the same time in learning how to mix house music, culminating in a few years where I played out live on a regular basis.
Naturally, my mates tried to cajole me at various stages though, after a few attempts, they eased back and realised that it wasn't going to happen.
A few years ago Notoplip bought himself a new set of clubs. I think that he was using golf as a medium for touching base with customers on a more regular basis. Anyway he kindly offered and brought round his old set encouraging me to get involved. His angle was that it would simply be good if I could join the lads on the odd golfing day out.
Naturally, the clubs sat in my garage for quite some while until Kitten bought me a couple of vouchers for lessons at the local golfing range.
Even then it was a few months before I actioned them and off I went into the garage to retrieve a by now rather cobweb ridden golfing bag.
Anyone who has played golf at all will recognise that at any golfing centre whether driving range or top notch course people seem united in wanting to project a strong sense of golfing image. Even rank beginners often have the latest clothes and the latest look. This is something that amuses me, because whilst I am aware of the impact of image I feel quite scornful towards that sort of attitude.
When Billy the Fish and I used to train regularly at a well known middle class chain of gymnasiums in our 20s and early thirties we stood out as people who were training whilst a lot of people waltzed around chatting, showing off their latest mobile phones with all the women in full makeup and everyone seemingly in the latest Nike gear. Of course our "grunt and groan" approach was not the image that the health club was particularly trying to project but we were popular with the fitness instructors and a regular core of people because they could see that we were working and were interested in what we were actually doing.
So, I'm not one to feel the need to live up to a consensus of image and neither am I one to be intimidated by it. I do conform in what I consider to be appropriate circumstances and feel that I "brush up well" when I make an effort.
So there I was getting out of my car with a generously donated but now slightly tired set of golf clubs in my jeans and T-Shirt.
I confess to feeling slightly uncomfortable as I waited to meet my instructor. The feeling being as much a product of unfamiliarity with the process as much as anything else. Sure enough though, after a bit of a delay, a bloke dressed from head to toe in "the golf look" approached me and asked if I was "Mr Swordfish".
I was quite looking forward to the lesson as I thought that if I could master the basics of the game then I knew that my mates were not of a great standard so I could get out with them for a few beers. I seem to recall that I had recently given up playing live as a DJ and so I had a lot more free time on my hands that had previously been invested in listening to and working with new tunes.
The instructor looked my golf bag up and down and asked if they were my own clubs. I said that they were and that my mate had given them to me to get me started. I said that if I got he golf bug then I would go out and invest in my own set but I thought that I was in a good place to start with.
He suggested that we started with a six iron, or at least that is what I recall. Then there was the moment that made me decide that perhaps golfing was not for me; a sign from the gods.
He pulled the club out of the bag and took the club by handle and exclaimed "Oh, it's all sticky".
Sure enough there was some kind of evil looking residue on the end of the handle, sort of brown and oily and gooey.
I really don't know what it was, or where it came from. Obviously there was something in the bottom of the bag but what it was or how it got there I couldn't tell you.
Anyone who has seen the old sitcom "The Good Life" with Penelope Keith, Paul Eddington, Richard Briers and Felicity Kendall will know that I felt like Richard Briers character Tom at that moment. Reminiscent of him feeling inadequate in front of Jerry's well heeled business associates I decided to play with "a straight bat" and asked the instructor whether he had anything to wipe the handle with.
He didn't.
So there I was with the golfing instructor, clearly dressed up to impress the ladies and anyone else who cared to notice. He was stooped and wiping the club handle back and forth along his perfect piece of artificial grass so that I could begin my lesson.
He probably hasn't experienced a similar event since. I also seem to recall that we stuck with the same club throughout the lesson.
In Praise of Risk
When my operation date was cancelled at the beginnning of July there was a week of decision making to determine whether I was still viewed as "curable" or whether it was simply palliative care from there on in.
Thankfully the doctors decided to go down the curable route and the object of the combined chemotherapy and radiotherapy is to stop the disease in its tracks and achieve a reduction in its size and amount of nodal infection outside the oesophageal wall. If that can be achieved then I am heading for surgery and potential cure.
If the treatment does not provide adequate shrinkage or the cancer rebounds and starts to grow again then it is palliative care from thereon in.
I am reminded about the conversation I had when signing the consent form for the latest bout of treatment. It is something that I have mentioned before but it is worth another mention in the context of me not having any vices at the moment. I may not have vices but at least I am immersed in risk.
The registrar took me through the potential side effects. He had a form in front of him and ticked each element as he spoke of it. "The treatment could damage your heart, your lungs, your pancreas, your liver, your kidneys". At which point I interrupted him to say "So that's all my internal organs except for my brain then". He looked at me in a matter of fact sort of way and simply said "Yes, it's because of where the tumour is".
The fact is that cancer treatment is largely a passive experience for the patient. All the patient can do is what is asked of them and to try and keep the mental and physical framework as well positioned as possible for the treatment to have the best arena to work in.
I only have three more radiotherapy sessions left and then that is the end of my treatment before being assessed in December.
Between Wednesday's final session and reassessment I will be extending my acquaintance with Faith, Hope and Charity. Self-belief is the weapon of choice going forward a weapon which is questioned whilst in the throws of treatment.
Thankfully the doctors decided to go down the curable route and the object of the combined chemotherapy and radiotherapy is to stop the disease in its tracks and achieve a reduction in its size and amount of nodal infection outside the oesophageal wall. If that can be achieved then I am heading for surgery and potential cure.
If the treatment does not provide adequate shrinkage or the cancer rebounds and starts to grow again then it is palliative care from thereon in.
I am reminded about the conversation I had when signing the consent form for the latest bout of treatment. It is something that I have mentioned before but it is worth another mention in the context of me not having any vices at the moment. I may not have vices but at least I am immersed in risk.
The registrar took me through the potential side effects. He had a form in front of him and ticked each element as he spoke of it. "The treatment could damage your heart, your lungs, your pancreas, your liver, your kidneys". At which point I interrupted him to say "So that's all my internal organs except for my brain then". He looked at me in a matter of fact sort of way and simply said "Yes, it's because of where the tumour is".
The fact is that cancer treatment is largely a passive experience for the patient. All the patient can do is what is asked of them and to try and keep the mental and physical framework as well positioned as possible for the treatment to have the best arena to work in.
I only have three more radiotherapy sessions left and then that is the end of my treatment before being assessed in December.
Between Wednesday's final session and reassessment I will be extending my acquaintance with Faith, Hope and Charity. Self-belief is the weapon of choice going forward a weapon which is questioned whilst in the throws of treatment.
Need an Outlet
Yesterday I was talking about not having any vices left. More importantly, having not worked much in the last week or so, I haven't had any outlets at all and that it seems has made me very grumpy. Probably more grumpy than the two old men in the muppets (Stadler and Waldorf) and probably more grumpy than a sackful of rattlesnakes that haven't been released or fed for three months.
Of course, it is good to rest and rest has been the most important element of the process at this stage. Conversely, when the effort levels are reduced to a minimum I feel that it is good to start "rebuilding" again. Through this process comes change.
I'm in no rush because I have to work with the energy levels I have got, but I will be off to the stores today to get a lead that will allow me to plug my laptop into my music setup allowing me to start producing something tangible. That seems like a good initial point of focus.
It looks like a bright day, so some fresh air wouldn't go amiss either.
Today is the last day before the kids back to school, so I will have to make the most of them too.
Of course, it is good to rest and rest has been the most important element of the process at this stage. Conversely, when the effort levels are reduced to a minimum I feel that it is good to start "rebuilding" again. Through this process comes change.
I'm in no rush because I have to work with the energy levels I have got, but I will be off to the stores today to get a lead that will allow me to plug my laptop into my music setup allowing me to start producing something tangible. That seems like a good initial point of focus.
It looks like a bright day, so some fresh air wouldn't go amiss either.
Today is the last day before the kids back to school, so I will have to make the most of them too.
Saturday, 4 September 2010
All Quiet on the Western Front
After attending the regular radiotherapy appointment yesterday there were a few work issues to deal with and a visit from the "Mustard Man" a friend who lives directly opposite our house. Then the sofa monster got me.
Kitten went out to pick up the kids, who were around friends' houses and I awoke after they arrived back at the end of the first half of the England match. I thought I'd watch the second half but promptly fell asleep again.
There's nothing wrong with sleeping, but then I was awake until 2am, so I am out of sync with the rest of the household.
This is really how boring everything, including me has become. When I commit myself to doing something I do it with singular focus and I now find myself in a strange position of not only not having any energy but not having a any vices either. I have become anodyne.
I was describing this stage of the process to someone and compared it to going for a run with a mate. For the first section you chat and get into your stride but then you hit that mid-section where you are not near the beginning and you are not near the end. You can't talk anymore and it becomes a battle to keep going and keep pushing. Unless there is good reason you know that you aren't going to stop, you will just keep on until you see a marker that signifies that he end is in sight. At that point things get much easier.
The only thing that I haven't actioned yet is the oral morphine, which is intended to make eating easier. I've never had any form of morphine before, so perhaps that's as close to a party as I am going to get in the near future. I haven't touched it yet and, of course, it is only to be taken in small doses but I will probably give it a go this weekend to see if I can get a substantial meal down.
It's a quiet weekend and, under normal circumstances I would be in the car and down to see Roxy's new arrival but I think we will have to pencil that one in for coming weeks when I hope that the energy levels rebound a little.
Kitten went out to pick up the kids, who were around friends' houses and I awoke after they arrived back at the end of the first half of the England match. I thought I'd watch the second half but promptly fell asleep again.
There's nothing wrong with sleeping, but then I was awake until 2am, so I am out of sync with the rest of the household.
This is really how boring everything, including me has become. When I commit myself to doing something I do it with singular focus and I now find myself in a strange position of not only not having any energy but not having a any vices either. I have become anodyne.
I was describing this stage of the process to someone and compared it to going for a run with a mate. For the first section you chat and get into your stride but then you hit that mid-section where you are not near the beginning and you are not near the end. You can't talk anymore and it becomes a battle to keep going and keep pushing. Unless there is good reason you know that you aren't going to stop, you will just keep on until you see a marker that signifies that he end is in sight. At that point things get much easier.
The only thing that I haven't actioned yet is the oral morphine, which is intended to make eating easier. I've never had any form of morphine before, so perhaps that's as close to a party as I am going to get in the near future. I haven't touched it yet and, of course, it is only to be taken in small doses but I will probably give it a go this weekend to see if I can get a substantial meal down.
It's a quiet weekend and, under normal circumstances I would be in the car and down to see Roxy's new arrival but I think we will have to pencil that one in for coming weeks when I hope that the energy levels rebound a little.
Friday, 3 September 2010
A little Vibrancy
Despite Kitten's advice I have popped into the office today and have dovetailed the journey with a visit to the Mad Canadian Osteopath.
I must admit that the short walk from the station to the osteopath's was a bit of a chore, but the point of coming in today was to touch base on a few issues and also just to get out of the house. The treatment also helped and at least lifted my energy levels from "ground zero".
It was before 8:00 when I got to the osteopath's and, at that time, London is a much more serene place than when I emerged back on street level after 9:00am.
Today is clear blue skies in London and, whereas a daily commute very quickly becomes a chore, coming over Blackfriar's bridge on the train was a picture postcard experience this morning.
If you lift your head up for more than a moment days like today show what a vibrant place London is and the fact that I have got off my settee for a while is inspiring in itself.
I am sure that I will pay for it later though.
I must admit that the short walk from the station to the osteopath's was a bit of a chore, but the point of coming in today was to touch base on a few issues and also just to get out of the house. The treatment also helped and at least lifted my energy levels from "ground zero".
It was before 8:00 when I got to the osteopath's and, at that time, London is a much more serene place than when I emerged back on street level after 9:00am.
Today is clear blue skies in London and, whereas a daily commute very quickly becomes a chore, coming over Blackfriar's bridge on the train was a picture postcard experience this morning.
If you lift your head up for more than a moment days like today show what a vibrant place London is and the fact that I have got off my settee for a while is inspiring in itself.
I am sure that I will pay for it later though.
Thursday, 2 September 2010
Now I know why I am so Hungry!
At clinic today I was quite proud of myself in saying that I am getting over 2000 calories in a day which, to me, is a day's food.
What I didn't understand is that the radiotherapy burns calories and I should be getting in closer to 4000!
In order to get 4000 in I think that I would have to be eating constantly because the rate at which I am able to eat is so slow.
What it does explain is why I feel constantly famished. I can polish off 500 calories of rice pudding which although it is not the biggest meal should keep me fed for a while, but I am starving in less than an hour.
It was suggested that it may be time to use the oral morphine to make eating easier but I certainly have to keep getting the calories up. Getting to a stage where I am operable in terms of the tumour but inoperable due to malnutrition is a possibility if things were to worsen. I am currently a long way from that but it is important to keep pushing forward
What I didn't understand is that the radiotherapy burns calories and I should be getting in closer to 4000!
In order to get 4000 in I think that I would have to be eating constantly because the rate at which I am able to eat is so slow.
What it does explain is why I feel constantly famished. I can polish off 500 calories of rice pudding which although it is not the biggest meal should keep me fed for a while, but I am starving in less than an hour.
It was suggested that it may be time to use the oral morphine to make eating easier but I certainly have to keep getting the calories up. Getting to a stage where I am operable in terms of the tumour but inoperable due to malnutrition is a possibility if things were to worsen. I am currently a long way from that but it is important to keep pushing forward
Roxy Delivers
Congratulations to Roxy and her parents Lindylu and Yorshire Boy on Roxy's new arrival.
Roxy had a baby girl at 11:45am who weighs 8lbs 2oz.
It is good to have news of new life and a new energy to immerse in the family.
Roxy had a baby girl at 11:45am who weighs 8lbs 2oz.
It is good to have news of new life and a new energy to immerse in the family.
Clinic Day
Thursdays are weekly radiotherapy clinic days. Clinic involves a chat with the consultant or registrar about progress and any issues.
To be honest there isn't a lot going on at the moment that isn't already known. It is clear that I am just eking my way through the last section of this treatment, as I am feeling weak, run-down and in pain but that is par for the course at this stage and a good excuse to carry on snoozing.
There may be some concern about my weight as I promptly lost another couple of pounds after last week's clinic but my weight has been steady from there. I'm beginning to look a bit of an odd shape as I am stuffing in high fat calories which do nothing for the mid-section whilst the weight falls off my legs and arms. I will probably end up looking like a "skinny Buddha". I definitely have teh ear lobes for it but like Notoplip I am lacking in the top lip department and may just have to settle for being a "Bud" rather than a "Buddha"
I have a cluster of appointments at lunch time; clinic, radiotherapy and dentist (at the hospital), so that will keep me occupied for a while and will probably wear me out. It's a far cry from hedonistic days of yesteryear.
To be honest there isn't a lot going on at the moment that isn't already known. It is clear that I am just eking my way through the last section of this treatment, as I am feeling weak, run-down and in pain but that is par for the course at this stage and a good excuse to carry on snoozing.
There may be some concern about my weight as I promptly lost another couple of pounds after last week's clinic but my weight has been steady from there. I'm beginning to look a bit of an odd shape as I am stuffing in high fat calories which do nothing for the mid-section whilst the weight falls off my legs and arms. I will probably end up looking like a "skinny Buddha". I definitely have teh ear lobes for it but like Notoplip I am lacking in the top lip department and may just have to settle for being a "Bud" rather than a "Buddha"
I have a cluster of appointments at lunch time; clinic, radiotherapy and dentist (at the hospital), so that will keep me occupied for a while and will probably wear me out. It's a far cry from hedonistic days of yesteryear.
Wednesday, 1 September 2010
Fatigue is the Theme
As I enter the last week of radiotherapy the fatigue has set in.
The good news is that despite the difficulties in eating I am getting the calories in. That is in no small part due to Kitten's efforts.
The overall treatment regime has robbed me of the energy levels that I have had until the last few weeks and it is just a case of resting up as much as possible.
I'm taking it easy, but it is boring!
I'm still working, but not anything like full days and a quick lie down on the sofa often turns to a hours snooze and a bit of television watching.
I guess that is just where I am at. My body has been through a lot over the last few months and now it is telling me something as I approach the end of the treatment regime.
The good news is that despite the difficulties in eating I am getting the calories in. That is in no small part due to Kitten's efforts.
The overall treatment regime has robbed me of the energy levels that I have had until the last few weeks and it is just a case of resting up as much as possible.
I'm taking it easy, but it is boring!
I'm still working, but not anything like full days and a quick lie down on the sofa often turns to a hours snooze and a bit of television watching.
I guess that is just where I am at. My body has been through a lot over the last few months and now it is telling me something as I approach the end of the treatment regime.
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