Now I know what will kill me though I don’t know when it will happen and that knowledge brings a certain sort of calm.
I had always assumed that I would live into my nineties as did my parents and my mother’s sister but the odds are now that if I make 75 I will be doing well and somehow that doesn’t matter. After all, the purpose of life surely can’t just be to hang on to it for as long as possible no matter what it contains or what it’s quality.
Obviously I hope that when death comes be it in ten months or ten years then I want it to be free of pain and that it leaves me with my dignity intact. Dignity is still strangely important to me.
There is one practical implication. I had always assumed that I would survive Ann but clearly there is now a good chance that I will die first so all the vague strategies I had devised in odd moments for how I would manage without her are likely to be useless and instead we have to work out how she will survive and have a decent life after mine ends.
On Wednesday I will attend the Christie to have my rhenal function tested to see what sort of chemotherapy is most suitable for me. Hopefully that means I can start my first cycle the following Wednesday.
Sunday, 28 June 2009
Friday, 26 June 2009
Meeting The Surgeon
Today I talked to the surgeon who will do the operation & I came away a little cheered. I had read about bladder reconstruction as an alternative to a stoma on the Cancer Research UK website about a week ago & had rejected it as not for me but, although I'm by no means sold on the idea, I'm not ruling it out as yet. After all, a radical removal of the bladder with a stoma bag for the rest of my life isn’t an attractive option either.
http://www.cancerhelp.org.uk/help/default.asp?page=3169
All inall I think I do have more options as I learn more and talk to the experts.
He agreed that chemotherapy could improve the 50% five-year survival rate by 5% which is worthwhile and acknowledged that in some cases it might make radiation therapy an alternative to surgery. After all, even if radiation therapy doesn't do the job surgery is still there as the last possible treatment so nothing is lost.
Fiona, the MacMillan nurse I met a couple of weeks ago, was also present and she is going to put me in touch with their specialist stoma nurses and somebody who has been through all this stuff before me. My wife, Ann, definitely needs some support because at the moment she feels like a helpless passenger on a train heading at full speed for the buffers.
What I need now is for the Christie to get their fingers out, carry out the kidney function test & get chemo started.
http://www.cancerhelp.org.uk/help/default.asp?page=3169
All inall I think I do have more options as I learn more and talk to the experts.
He agreed that chemotherapy could improve the 50% five-year survival rate by 5% which is worthwhile and acknowledged that in some cases it might make radiation therapy an alternative to surgery. After all, even if radiation therapy doesn't do the job surgery is still there as the last possible treatment so nothing is lost.
Fiona, the MacMillan nurse I met a couple of weeks ago, was also present and she is going to put me in touch with their specialist stoma nurses and somebody who has been through all this stuff before me. My wife, Ann, definitely needs some support because at the moment she feels like a helpless passenger on a train heading at full speed for the buffers.
What I need now is for the Christie to get their fingers out, carry out the kidney function test & get chemo started.
Wednesday, 24 June 2009
At The Christie
This morning I saw a cancer specialist at Manchester’s Christie, a centre of excellence for cancer treatment.
The Urology consultant who had diagnosed the cancer had told me I would get an appointment as chemotherapy prior to surgery might increase the chances of surgery ridding me of the tumorous cells by about 5% provided, of course, I was fit enough to undertake it. I was not to excited by the prospect of this visit but on the other hand I wasn’t going to fail to attend as I’m just not that confident in this new world I’m inhabiting.
Actually the visit was very positive. It appears that the response to three cycles of chemotherapy differ very widely and are unpredictable. In about a third of cases the tumor responds so well that surgery can be avoided and radiation therapy used instead. /Clearly I can go for that!
Today bloods were taken & my chest was x-rayed. Next week my kidney function will be tested to make sure I can handle flushing out the residues of the therapy and then, if all goes well, I will start the first of three cycles of chemotherapy with each cycle lasting three weeks.
On the first week the treatment is given as a drip over some 16 hours so involves staying in hospital overnight. In the second week it’s given by injection & in the third week of the cycle tests are carried out to make sure I can handle another cycle. I’m told that side-effects aren’t usually too unpleasant during only three cycles but tend to develop in those who require longer term treatments.
After these three cycles my bladder’s performance and scans will be used to assess whether surgery is still required.
One in three isn’t bad odd, I reckon.
The Urology consultant who had diagnosed the cancer had told me I would get an appointment as chemotherapy prior to surgery might increase the chances of surgery ridding me of the tumorous cells by about 5% provided, of course, I was fit enough to undertake it. I was not to excited by the prospect of this visit but on the other hand I wasn’t going to fail to attend as I’m just not that confident in this new world I’m inhabiting.
Actually the visit was very positive. It appears that the response to three cycles of chemotherapy differ very widely and are unpredictable. In about a third of cases the tumor responds so well that surgery can be avoided and radiation therapy used instead. /Clearly I can go for that!
Today bloods were taken & my chest was x-rayed. Next week my kidney function will be tested to make sure I can handle flushing out the residues of the therapy and then, if all goes well, I will start the first of three cycles of chemotherapy with each cycle lasting three weeks.
On the first week the treatment is given as a drip over some 16 hours so involves staying in hospital overnight. In the second week it’s given by injection & in the third week of the cycle tests are carried out to make sure I can handle another cycle. I’m told that side-effects aren’t usually too unpleasant during only three cycles but tend to develop in those who require longer term treatments.
After these three cycles my bladder’s performance and scans will be used to assess whether surgery is still required.
One in three isn’t bad odd, I reckon.
How It All Began
A couple of years ago I started to experience urinary discomfort. It would last for a week then go away only to return a couple of weeks later. In the end after some nagging from “She Who Must Be Obeyed” I consulted my GP.
Her opinion was that I had an enlarged prostrate though from the symptoms I had described probably not prostate cancer. She referred me to the Urology department at a local hospital.
The consultant confirmed her diagnosis and prescribed an alpha blocker and told me to come back in six months.
After a few months the symptoms were no better and I was starting to suffer from a very tender penis. At its worst it had me walking round bow-legged though that wasn’t usual I’m pleased to say.
I’d had an extensive X-ray survey which seemed to suggest there was nothing serious wrong other than the non-malignant enlarged prostate but it turned out later that there was a hint of something in the bladder. The consultant ignored it.
The discomfort increased and the treatment really didn’t seem to be very effective despite fenisteride being added to my daily drug intake and I was determined to push for a rethink at my appointment in March 2009 when I had a letter cancelling it.
After not hearing of a new date I chased it up and was told that the consultant had returned to Poland and after a few phone calls my care was transferred to another consultant at a different hospital. I was quite pleased at this news as it gave me a fresh start with a fresh mind looking at my problem.
This new consultant ordered various tests and also spotted the remark on the earlier X-ray and saw a similar shadow on an ultra-sound scan he had ordered. He said he wanted to get a camera up into my bladder to see what was going on and so on May 11th i went to have my urethra stretched andan internal examination of the bladder.
When I came round I was told by the consultant that he had taken tissue samples for testing but in his view I had a cancer which had spread into the muscles of the bladder.
I saw him again about a week later when he confirmed this and said the next step was an MRI scan to determine how far the cancer had spread. He thought radiation therapy was the probable treatment but he couldn’t be sure until he had seen the results of the MRI scan.
Last week I saw him again and it was worse than he had thought and he is recommending that a complete removal of my bladder is necessary with possibly some chemotherapy first.
So here I am facing a future of carrying a bag of urine under my shirt.
Her opinion was that I had an enlarged prostrate though from the symptoms I had described probably not prostate cancer. She referred me to the Urology department at a local hospital.
The consultant confirmed her diagnosis and prescribed an alpha blocker and told me to come back in six months.
After a few months the symptoms were no better and I was starting to suffer from a very tender penis. At its worst it had me walking round bow-legged though that wasn’t usual I’m pleased to say.
I’d had an extensive X-ray survey which seemed to suggest there was nothing serious wrong other than the non-malignant enlarged prostate but it turned out later that there was a hint of something in the bladder. The consultant ignored it.
The discomfort increased and the treatment really didn’t seem to be very effective despite fenisteride being added to my daily drug intake and I was determined to push for a rethink at my appointment in March 2009 when I had a letter cancelling it.
After not hearing of a new date I chased it up and was told that the consultant had returned to Poland and after a few phone calls my care was transferred to another consultant at a different hospital. I was quite pleased at this news as it gave me a fresh start with a fresh mind looking at my problem.
This new consultant ordered various tests and also spotted the remark on the earlier X-ray and saw a similar shadow on an ultra-sound scan he had ordered. He said he wanted to get a camera up into my bladder to see what was going on and so on May 11th i went to have my urethra stretched andan internal examination of the bladder.
When I came round I was told by the consultant that he had taken tissue samples for testing but in his view I had a cancer which had spread into the muscles of the bladder.
I saw him again about a week later when he confirmed this and said the next step was an MRI scan to determine how far the cancer had spread. He thought radiation therapy was the probable treatment but he couldn’t be sure until he had seen the results of the MRI scan.
Last week I saw him again and it was worse than he had thought and he is recommending that a complete removal of my bladder is necessary with possibly some chemotherapy first.
So here I am facing a future of carrying a bag of urine under my shirt.
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