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!
Monday, 6 September 2010
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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