Yesterday was “marking up” day.
It was back to the Christie for a CT scan and some permanent marks on my stomach to act as reference points for the forthcoming radiotherapy which starts a week today, Tuesday. I’m a bit disappointed about the delay but I gather it takes a few days for a doctor to overlay the results of the CT scan with the MRI scan results and form a plan of attack so I really shouldn’t complain.
I had a consultation with Dr. K. whom I’ve spoken of before and she took me through the likely side-effects which include an irritated bladder leading to more frequent and painful urination (well, there’s nothing new about that), fatigue and some minor bowel problems. She did say, however, that most people who have been through chemo don’t find the tiredness from radiotherapy as bad as from chemotherapy so if we’ve got through one the other shouldn’t be too bad.
In the meantime, as I have a week of grace, I am going to sit in court on Friday. This will be my first sitting since early Summer so it will be tough but at least it will end my leave of absence formally. OK, it may be mid-November before I am recovered enough to do another session but Jan, our rota clerk, says she can probably fix it so I can come back for mornings only a couple of times until I am fully fit.
Isn’t normal life wonderful!!!
Tuesday, 29 September 2009
Sunday, 27 September 2009
Returning To Normal
My body is gradually returning to normal.
During my chemotherapy I noticed that instead of needing a second shave by early evening I barely needed one by next morning and the charge in my shaver’s stand lasted nearly a month rather than just over a week. This last few days I have noticed a “late afternoon” stubble appearing again. Mind you, I am still losing hair so I’m treating my scalp very gently.
Yesterday I worked hard hoovering the house and towing a heavy trolly of shopping home during the morning then spending nearly four hours on my feet cooking and cleaning the kitchen during the afternoon and early evening. I may have overdone it a bit as Ann had to wake me this morning … at nine o’clock.
Also I’ve noticed that I’m up to the toilet only twice or three times during the night. I suspect that if I didn’t have an alcoholic drink immediately before bed time it would be only once.
As far as I can tell the sensations of urinating are normal now though I have to admit that after two years of discomfort and pain I can’t be sure any more what “normal” feels like.
Even my brain and energy levels are much better. This week I finally addressed the long-standing shortage of storage space on my computer system and bought a Western Digital “My Book” mirror edition and installed it myself. I also cleaned up a lot of unwanted software that was cluttering my machine. A few weeks ago I really wouldn’t have had the drive and energy to tackle those problems.
What I want now is for the radiotherapy to start as soon as possible so it is complete and I have recovered from it before Christmas. Tomorrow I have my “marking up” appointment and I should find out when the treatment will start.
I heard from Stephen this morning. Sadly the results of his MRI scan were not too good. The cancer has not shrunk much since the first cycle of chemotherapy and the various consultants will need to get their heads together to see what is likely to be the best way forward for him now. I fear that the outlook for him is not good though he is facing the future with his usual courage and positive attitude.
During my chemotherapy I noticed that instead of needing a second shave by early evening I barely needed one by next morning and the charge in my shaver’s stand lasted nearly a month rather than just over a week. This last few days I have noticed a “late afternoon” stubble appearing again. Mind you, I am still losing hair so I’m treating my scalp very gently.
Yesterday I worked hard hoovering the house and towing a heavy trolly of shopping home during the morning then spending nearly four hours on my feet cooking and cleaning the kitchen during the afternoon and early evening. I may have overdone it a bit as Ann had to wake me this morning … at nine o’clock.
Also I’ve noticed that I’m up to the toilet only twice or three times during the night. I suspect that if I didn’t have an alcoholic drink immediately before bed time it would be only once.
As far as I can tell the sensations of urinating are normal now though I have to admit that after two years of discomfort and pain I can’t be sure any more what “normal” feels like.
Even my brain and energy levels are much better. This week I finally addressed the long-standing shortage of storage space on my computer system and bought a Western Digital “My Book” mirror edition and installed it myself. I also cleaned up a lot of unwanted software that was cluttering my machine. A few weeks ago I really wouldn’t have had the drive and energy to tackle those problems.
What I want now is for the radiotherapy to start as soon as possible so it is complete and I have recovered from it before Christmas. Tomorrow I have my “marking up” appointment and I should find out when the treatment will start.
I heard from Stephen this morning. Sadly the results of his MRI scan were not too good. The cancer has not shrunk much since the first cycle of chemotherapy and the various consultants will need to get their heads together to see what is likely to be the best way forward for him now. I fear that the outlook for him is not good though he is facing the future with his usual courage and positive attitude.
Sunday, 20 September 2009
My Dilemma
I can’t say that Fiona’s idea that radiotherapy could make surgery impossible didn’t unsettle me, because it definitely did. So on the following Monday I spoke to Elaine, the community MacMillan nurse to pick her brains.
She had not heard of anything like that but, as she admitted, she is not connected to the surgeons so it was not within her immediate area of expertise. After a lengthy discussion she suggested I make an appointment with Dr. W. to clear my mind. Overnight I gave it a great deal of thought and on the Tuesday I spent ages with Google looking for research results and other material which could cast some light on the issue.
I found something I had come across ages before, soon after I was diagnosed, but had forgotten which stated that for the early stages of bladder cancer radiotherapy was a standard treatment but that if the cancer returned later surgery to remove the bladder was the response. That seemed to dispose of things.
As regards the success rates of radiotherapy versus surgery I did find some material from the Royal Marsden which suggested that it depended on the patient’s age and sex as to which was best. For a man of my age it really was just about even so that wasn’t too helpful.
However I couldn’t find any results which looked at the treatment regime I had gone through compared to surgery. There didn’t seem any research comparing chemotherapy followed by radiotherapy as against chemotherapy followed by surgery. I suspect that my treatment is too far ahead of the game for there to be any trustworthy figures.
So in the end I decided I didn’t need to see Dr. W. again and I put Fiona’s concerns to the back of my mind as I told Elaine when she rang later in the week. She had asked around her contacts and none of them had heard of the problem Fiona had raised so I’ll accept that there could be a slight risk but nothing more.
I know I have no medical training but somehow systemic chemotherapy to shrink the primary growth and hopefully kill off any microcellular traces that may have escaped followed by a carefully concentrated month of radiotherapy directed on any remaining cancer in the bladder sounds pretty good and I’m sticking with my decision. And if I’m wrong and the damned cancer comes back then I reckon I still have a pretty good chance that surgery will work.
In the meantime I am feeling pretty good and life is returning to normal. I still get tired in the early afternoon and I am shattered by about six in the evening and need a sleep but over the last couple of evenings I have managed to clear up the kitchen after our meal.
In some ways I feel a fraud as people I meet tell me how well I look. That cheers me up no end but some evenings I seem to drift in and out of sleep for a couple of hours.
Elaine says that just because I haven’t had major surgery doesn’t mean my body hasn’t taken a severe beating because the effects of three cycles of radical systemic chemotherapy can be just as serious. And I suppose that if I am still suffering aftereffects then the treatment may still be working.
Am I glad, therefore, that when I washed my hair last night I still found the plughole full of hair? I’ll leave you to decide.
She had not heard of anything like that but, as she admitted, she is not connected to the surgeons so it was not within her immediate area of expertise. After a lengthy discussion she suggested I make an appointment with Dr. W. to clear my mind. Overnight I gave it a great deal of thought and on the Tuesday I spent ages with Google looking for research results and other material which could cast some light on the issue.
I found something I had come across ages before, soon after I was diagnosed, but had forgotten which stated that for the early stages of bladder cancer radiotherapy was a standard treatment but that if the cancer returned later surgery to remove the bladder was the response. That seemed to dispose of things.
As regards the success rates of radiotherapy versus surgery I did find some material from the Royal Marsden which suggested that it depended on the patient’s age and sex as to which was best. For a man of my age it really was just about even so that wasn’t too helpful.
However I couldn’t find any results which looked at the treatment regime I had gone through compared to surgery. There didn’t seem any research comparing chemotherapy followed by radiotherapy as against chemotherapy followed by surgery. I suspect that my treatment is too far ahead of the game for there to be any trustworthy figures.
So in the end I decided I didn’t need to see Dr. W. again and I put Fiona’s concerns to the back of my mind as I told Elaine when she rang later in the week. She had asked around her contacts and none of them had heard of the problem Fiona had raised so I’ll accept that there could be a slight risk but nothing more.
I know I have no medical training but somehow systemic chemotherapy to shrink the primary growth and hopefully kill off any microcellular traces that may have escaped followed by a carefully concentrated month of radiotherapy directed on any remaining cancer in the bladder sounds pretty good and I’m sticking with my decision. And if I’m wrong and the damned cancer comes back then I reckon I still have a pretty good chance that surgery will work.
In the meantime I am feeling pretty good and life is returning to normal. I still get tired in the early afternoon and I am shattered by about six in the evening and need a sleep but over the last couple of evenings I have managed to clear up the kitchen after our meal.
In some ways I feel a fraud as people I meet tell me how well I look. That cheers me up no end but some evenings I seem to drift in and out of sleep for a couple of hours.
Elaine says that just because I haven’t had major surgery doesn’t mean my body hasn’t taken a severe beating because the effects of three cycles of radical systemic chemotherapy can be just as serious. And I suppose that if I am still suffering aftereffects then the treatment may still be working.
Am I glad, therefore, that when I washed my hair last night I still found the plughole full of hair? I’ll leave you to decide.
Saturday, 12 September 2009
A Tale Of Two Nurses
Yesterday, Friday, we had a visit from Elaine, our community MacMillan nurse as arranged to discuss the findings of the MRI scan and to help me make any decisions that I hadn’t felt able to make on Wednesday. In a sense her visit was unnecessary as I had already decided to go with radiotherapy at this stage, a decision which she clearly felt was right. She talked me through the procedures and the likely side-effects and left.
Shortly afterwards I had a phone call from another MacMillan nurse who works closely with Mr. M. the surgeon who would have and will do my surgery should it prove necessary. She seemed unaware that I had decided to go for radiotherapy and clearly wanted me to think again. She told me that radiotherapy can leave tissue damaged and distorted making surgery difficult or even impossible if it is required later.
Eh, What???
This is the first time anybody has mentioned such a possible outcome and I have to admit that it is a little alarming. I will speak to Elaine next week but I doubt if I will change my mind concerning the next step.
I hope I am not going to be piggy in the middle of some rivalry between consultants.
In the meantime apart from the tiredness I am feeling superb and better than for yonks.
Shortly afterwards I had a phone call from another MacMillan nurse who works closely with Mr. M. the surgeon who would have and will do my surgery should it prove necessary. She seemed unaware that I had decided to go for radiotherapy and clearly wanted me to think again. She told me that radiotherapy can leave tissue damaged and distorted making surgery difficult or even impossible if it is required later.
Eh, What???
This is the first time anybody has mentioned such a possible outcome and I have to admit that it is a little alarming. I will speak to Elaine next week but I doubt if I will change my mind concerning the next step.
I hope I am not going to be piggy in the middle of some rivalry between consultants.
In the meantime apart from the tiredness I am feeling superb and better than for yonks.
Wednesday, 9 September 2009
It's Good News Week!!!
The news is about as good as I could realisticly have hoped for. The MRI scan shows the size of the growth has greatly diminished and the tube connecting my right kidney to my bladder is entirely clear. And remember I have had one more session of chemotherapy since that scan was done.
Ann came with me to the Christie today because it was important to us both that she was getting as much information as I did and had a chance to ask questions, too. Dr. W explained my options now were surgery, the removal of the bladder, or radiotherapy to finish the damned thing off followed by regular inspections of my bladder to spot any recurrence as quickly as possible. We had quite a long discussion about percentage recurrences and five-year survival rates but data seemed a bit thin on the ground and some of it wasn’t directly applicable. However he didn’t argue when I said that a good response to chemotherapy which I have undoubtedly had must tip the odds in my favour. If the cancer does recur then surgery becomes the only option, of course, and there is a slight risk that secondries may have had a chance to develop elsewhere in my body. However one would hope that the chemotherapy which impacts on the whole body would have already wiped out any escaped cancer cells.
So I now have a gap before the radiotherapy begins to allow my body to recover completely from the chemotherapy though I have an appointment on September 28th to have a CT scan and a consultation.
I gather that the likely side-effects of radiotherapy are fatigue, painful and more frequent urination (sigh!) and either constipation or the squitters.
We can handle those and they tend to come late in the process and improve slowly during the five or six weeks after the sessions end.
So a few weeks of normal life lies before me with my fatigue from the chemo easing and my general fitness improving. On both Monday and Tuesday I walked to and from the Village, a round trip of about two miles, and actually enjoyed the walk. Yesterday I even had about ten or fifteen minutes on my exercise machine with some good rocking music belting out.
Inshort I feel better than I have for over two years and I am very optimistic about my future.
Ann came with me to the Christie today because it was important to us both that she was getting as much information as I did and had a chance to ask questions, too. Dr. W explained my options now were surgery, the removal of the bladder, or radiotherapy to finish the damned thing off followed by regular inspections of my bladder to spot any recurrence as quickly as possible. We had quite a long discussion about percentage recurrences and five-year survival rates but data seemed a bit thin on the ground and some of it wasn’t directly applicable. However he didn’t argue when I said that a good response to chemotherapy which I have undoubtedly had must tip the odds in my favour. If the cancer does recur then surgery becomes the only option, of course, and there is a slight risk that secondries may have had a chance to develop elsewhere in my body. However one would hope that the chemotherapy which impacts on the whole body would have already wiped out any escaped cancer cells.
So I now have a gap before the radiotherapy begins to allow my body to recover completely from the chemotherapy though I have an appointment on September 28th to have a CT scan and a consultation.
I gather that the likely side-effects of radiotherapy are fatigue, painful and more frequent urination (sigh!) and either constipation or the squitters.
We can handle those and they tend to come late in the process and improve slowly during the five or six weeks after the sessions end.
So a few weeks of normal life lies before me with my fatigue from the chemo easing and my general fitness improving. On both Monday and Tuesday I walked to and from the Village, a round trip of about two miles, and actually enjoyed the walk. Yesterday I even had about ten or fifteen minutes on my exercise machine with some good rocking music belting out.
Inshort I feel better than I have for over two years and I am very optimistic about my future.
Thursday, 3 September 2009
It's Over!
Yesterday, Wednesday, saw my last chemotherapy treatment. Hurray!
Over the previous few days the fatigue from last week’s treatment had relented slowly to the point where I walked to and from the Village on Tuesday, about two miles, and didn’t feel at all bad as a result. There is no doubt that I tolerated the different treatment far better than the old one.
On Tuesday afternoon I attended the Christie for that all important MRI scan, the results of which will decide the next step in my treatment so by Tuesday evening I was feeling pretty tired after what for me was a busy day.
Strangely enough yesterday’s treatment did knock me over by mid-afternoon in a way which hadn’t happened during the two previous cycles. I think that was because at this stage I had already felt pretty rough so didn’t really notice any difference whereas this time I was feeling pretty good. Anyway this morning all I’m suffering from is a bit of a hangover as I foollishly had too much to drink last night. It’s a self-inflicted injury so I can’t expect any sympathy.
Our thoughts are now focussed on next Wednesday when we will see Dr. W to find out the results of the MRI scan and see where the road leads us next. I am very optimistic and I’m busily trying to dampen that optimism so as to avoid a huge disappointment if the chemotherapy hasn’t eliminated enough of the cancer to save my bladder. Still, whatever the next steps may be at least the chemo is over and somehow we’ve survived it.
Radiotherapy or surgery, whichever comes next, will present new problems, new challenges but we will get through those together as we have all through our married lives. While we have one another we can get through anything life throws at us.
So for the next few days it’s a case of hoping for the best whilst being prepared for the worst.
Over the previous few days the fatigue from last week’s treatment had relented slowly to the point where I walked to and from the Village on Tuesday, about two miles, and didn’t feel at all bad as a result. There is no doubt that I tolerated the different treatment far better than the old one.
On Tuesday afternoon I attended the Christie for that all important MRI scan, the results of which will decide the next step in my treatment so by Tuesday evening I was feeling pretty tired after what for me was a busy day.
Strangely enough yesterday’s treatment did knock me over by mid-afternoon in a way which hadn’t happened during the two previous cycles. I think that was because at this stage I had already felt pretty rough so didn’t really notice any difference whereas this time I was feeling pretty good. Anyway this morning all I’m suffering from is a bit of a hangover as I foollishly had too much to drink last night. It’s a self-inflicted injury so I can’t expect any sympathy.
Our thoughts are now focussed on next Wednesday when we will see Dr. W to find out the results of the MRI scan and see where the road leads us next. I am very optimistic and I’m busily trying to dampen that optimism so as to avoid a huge disappointment if the chemotherapy hasn’t eliminated enough of the cancer to save my bladder. Still, whatever the next steps may be at least the chemo is over and somehow we’ve survived it.
Radiotherapy or surgery, whichever comes next, will present new problems, new challenges but we will get through those together as we have all through our married lives. While we have one another we can get through anything life throws at us.
So for the next few days it’s a case of hoping for the best whilst being prepared for the worst.
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