Christmas, At Last!

It’s Christmas at last!

Back in May when my cancer was diagnosed and it was likely that I would have to undergo radical surgery to remove my bladder I dreaded the next few months and wished I could sleep until Christmas when, hopefully, I would be well on the way to recovery. As it’s turned out I’ve been able to avoid that surgery, so far at least, and, although much of the last few months has been pretty rough, I still feel I’m well on the way to recovery.

I had my radiotherapy follow-up appointment about ten days ago and so now I’m officially finished with the Christie and presumably handed back to the consultant at Trafford General. No doubt I will be hearing from them early in the new year to arrange my first bladder inspection, an event I am rather dreading partly because of the procedure itself and also because if the results show the cancer is still present then surgery is back on the agenda.

In the meantime we had Christmas and it was absolutely wonderfull My side-effects are now slight leaving me with some fatigue but a bladder which is not causing me pain and which is performing the way it should acting as a storage vessel for several hours rather than a tube with a five-minute delay switch built into it.

I now get up only once or twice a night which should mean that I awake much more refreshed than I have for ages. However it isn’t quite working like that as my sleep is very “active” owing to the quite powerful dreams I experience every night.

I have always dreamed just as most people do and they are an important part of sleep. Indeed, dream-deprivation can do more psychological damage than simple sleep deprivation but my dreams are so powerful that I am not getting as much really refreshing sleep as I should.

Obviously when I was up many times in the night I was deprived of much of my dreaming as every time I sank into REM sleep my bladder would wake me and end the dream.

I thought at first that I was simply making up for lost time and making up some sort of “dream shortfall” but the intensive dreaming is continuing every night.

It isn’t that the dreams are unpleasant though they do all seem to be placing me in frustrating situations where I am unable to influence events or make progress towards whatever outcome I set out to achieve. Maybe this reflects my worry that I am no longer wholly in charge of my destiny and am unhappy that so much of my future is being handed over to the medical profession.

If – no, when my check up comes up with a clean bill of health I hope this anxiety will reduce and the dreams will diminish. I should know in early February.

Cancer Survival Rates

I know this has been my first note for some weeks but really there has been little to report except for a progress report on the side-effects of my treatment and I doubt if anybody really wants a blow by blow account of those. Suffice it to say that I still get very tired and that my digestive system still isn’t back to normal though both of those are improving. However every day is different and a pattern is ard to identify.

This item in the news this morning has really got my blood up, however.

http://news.bbc.co.uk/#startcontent


I’m very pleased to hear that cancer survival rates are greatly improved in the UK though still not as good as most of Western Europe’s. The differences in one year survival rates across different parts of the country is disturbing and it doesn’t appear to relate solely to prosperous or deprived areas as one might expect.

The biggest problem seems to be in diagnosis. Patients aren’t taking their symptoms to their GP early enough and GPs aren’t referring their patients to specialists promptly enough. This makes me a bit angry.

I went to my GP with symptoms of a urinary problem in the Summer of 2007 and, because there was no sign of an infection, she quite rightly, referred me to a urologist whom I saw in August that year. He diagnosed my problem as a non-malignant enlarged prostate and began treating me for it despite the presence of leukocytes in my urine sample. I learnt much later that this is a marker for, amongst other conditions, bladder cancer.

My condition was not finally diagnosed until May 2009. Hardly my fault or my GPs!

It's Over!

It’s over!

I’ve had all twenty of my radiotherapy treatments and, apart from a follow up to make sure the side effects are fading, I’m finished with the Christie.

It’s odd because I have little time for hospitals and doctors but I actually felt a little sad as I left on Monday. Unlike most bits of the NHS I’ve experienced throughout my life the staff at the Christie, medical and admin, treated me like a person rather than just another damned case there to make their life difficult. In three months time I will be back at Trafford General or Wythenshawe to let them put a camera into my bladder to check that the tumour is really gone. I’m not looking forward to that, of course, but it’s necessary. Mind you, I am pretty sure that I will spot the symptoms of a return of bladder cancer before they spot it.

As usual on Mondays I saw a doctor after my treatment. I was expecting Dr. W., the consultant, as usual and I had a few questions to ask him about how confident he felt that he had finished the damned tumour off completely but instead of him it was a junior doctor. There was absolutely no point in asking him.

Despite feeling a bit sad I am really relieved not to be spending an hour and a half or two hours on a hospital visit every weekday especially in the early afternoon which is just when my body wants a rest. Today was great as I had a short sleep and felt fine for the rest of the afternoon.

The side-effects have got a bit worse over the last week so that’s another reason I’m pleased the course of treatment is complete. Hopefully things may start to improve after the weekend.

Mind you, I have unwittingly contributed to the rather uncertain state of my bowels. When I was on chemotherapy I suffered from severe constipation and the hospital gave me a box of sachets of stuff to be dissolved in water. On radiotherapy, when I complained of being a bit loose they gave me a similar box of sachets to help that too. I’m an old-fashioned soul and didn’t want to waste the older box so started taking those rather than opening the new one. Unfortunately as I found out this morning the two boxes though similar did not contain the same stuff and I had inadvertently been taking a laxative rather than something to ease my loose bowels. Ah well, at least things should start to improve now I’ve stopped using the wrong stuff.

Sixty-Five Today

I’m sixty-five today and I have only two treatments to go.

The day started badly as I had the runs and had to resort to a couple of Imodiums to settle things down before I went out. From such a start things can only improve.

It’s been a day to make me realise how damned lucky I have been. When I was waiting for my treatment I was listening to a conversation between two women waiting for their husbands to come out from radiotherapy. Both men had had cancer in their throats or mouths and both had had to have part of their tongue removed. The surgeons had reconstructed their tongues using muscle from their arms and legs. I think that’s pretty amazing.

Mind you, the husbands were both having dreadful pains in their mouths and were experiencing great difficulty eating. Indeed one had not eaten for over a week and was being fed through a tube.

Later, after I had returned home a friend arrived to wish me happy birthday. She was telling us about the father of a mutual acquaintance who was dying of cancer. His had started in his bladder, too, but he hadn’t done anything until he had a big lump on his stomach. I just can’t imagine how he could have ignored it that long if his symptoms were anything like mine. Maybe his was far less painful but far more aggressive than mine and he hadn’t really worried about it until it was too far advanced.

Sometimes I wonder why I complain about feeling tired and having the minor inconvenience of the runs.

Fifteen Down

Fifteen down and that means only five more to go. Four more treatments this week and then the last one next Monday and it won’t be a day too soon as the tiredness is really building up now.

Mostly I’m fine in the morning and can get a few things done but then I’m ready for a rest in the early afternoon but, of course, that’s just the time I have to rush round to go to the Christie for treatment and by the time I get back the opportunity has passed. Losing a couple of hours every weekday afternoon is a real bind.

I worked quite hard on Saturday morning and then I felt utterly shattered by lunch time. All the family turned up just after two and the girls were delighted to see their uncle for the first time in many months. The happy sound of little girls’ giggling and shrieking with excitement really got to me which was sad.

Sunday was much easier because I got most of the preparation of the evening meal done during the morning, had a sleep in the early afternoon and then I was OK until about seven o’clock before I started to droop again.

Today, being Monday, I had my weekly session with Dr. W. I mentioned to him a concern I had about a bruised feeling just where my left thigh becomes my left buttock. It’s a pain I had when almost all of me below the waist ached or hurt to some extent and it has returned on and off this last ten days or so. He says it is likely to be some soft tissue being affected and irritated by the radiation but if it is still troubling me in a few weeks he’ll have a closer look at it. His explaination makes sense and I feel reassured.

Twelve Down

Twelve down and eight to go!

So far the side-effects are quite manageable though the fatigue is starting to get a hold now. It wouldn’t be so bad if I could have a sleep during the afternoon but of course I have to go for my treatment and, depending on how late they are running and how quickly my taxi home takes to get to me, it can be three or three thirty before I’m back and then I have other things to do. So I have about an hour’s sleep in the early evening and I’m OK. And of course I’m drinking more to keep fluid moving through my bladder so I’m up several times during the night.

Apart from that I’ve slipped into the routine quite easily but it is a bit of a drag having to go every day.

I heard from Stephen over the weekend and I am worried about him. I mentioned that his MRI scan had shown that he had not responded too well to the chemotherapy and that the team were thinking how to proceed. He has still not heard anything which I find worrying.

And he didn’t sound so good. He said he had had a few rough days caused by painful constipation which he put down to the side-effects of the chemo but I am not so sure as most of my side-effects have gone now. I fear that things are not going to work out well for him.

The First Weekend

It’s Sunday and so far I’ve had four treatments and now I have a weekend off. The NHS does not do weekends.

The treatments are simple enough and take only about ten minutes each day. You don’t even have to undress and wear one of those hideous hospital gowns but just bare the bit to be treated, in my case my pelvic area. It’s been several decades since young women were so keen to pull my trousers down.

It takes a little time to get you lined up correctly on the treatment table and the machine properly positioned above you. The machine emits three laser beams which have to be lined up exactly on the permanent marks on your body. Even then they take a couple of pictures before treating you just to make sure that the set up is exactly as it was on the day the CT scan was done and the markers put on your body. I have the most photographed pelvis since Elvis.

Once everything is right the staff withdraw and you get zapped from above, below and from each side with each zap lasting about ten seconds and then it’s all over for that day.

I have only one complaint and I’m aware how petty it may sound but on three of my four treatments I have been kept hanging around for half an hour beyond my appointment time. I’m an old-fashioned soul and to me an appointment is an appointment and it’s sloppy and lacking in respect when punctuality is treated with such a casual attitude.

So I’ve rushed my lunch to be there on time and then I’m sitting there suffering indigestion as a result. This is the only experience I have of the Christie that reminds me of what the NHS is like.

Now having got that off my chest I can say I am still feeling good. OK, I am going to the bathroom more often especially during the night but that is because I am drinking much more. And one good bit of news which came from a conversation with a readiographer is that tea, coffee and alcohol are perfectly all right as long as I ensure I drink plenty of water as well. That bit of news cheered me up no end as a month or six weeks with water as my main drink would have been a real trial. So every time I pass a tap I drink a couple of glasses of water and when I return to my bed from the toilet during the night I take a good swig of bottled water as I have learned that it’s best to keep my system moving and not to let my bladder run on empty.

I have heard nothing from Stephen and I am worried about him. I suppose I should ring him but I don’t want to push into his life at what must be a difficult time for him and Yvonne so I hope he’ll ring me when he has any news.

Radiotherapy Begins

Yesterday I began my course of 20 radiotherapy sessions and it went very smoothly.

I arrived about five minutes before my appointment time, 12.45, and there was no hanging about at all. I was encouraged to empty my bladder and then I was on the treatment bed with my shirt pulled up and my trousers and pants pulled down to give the linacc unit a clear shot. It took more time actually to line everything up correctly using the marks they put on my skin last week than to do the treatment itself.

Oh, I had received some advice on possible side-effects and how to reduce them and it looks as if drinking tea, coffee and alcohol is out for a while. How can I survive?

I gather it will probably be a couple of weeks before I start to feel any side-effects kick in but then I can expect more frequent and uncomfortable urination and quite likely a rather loose bowel. Oh well, I reckon that, after what chemo did to me, I can handle that.

In the meantime normal life goes on. Last night we went out for a Thai meal to celebrate our wedding anniversary and I drank a pint of Thai beer which will be my last alcoholic drink until this is all over.

Back In Court

I took another step towards normality on Friday by sitting in court for the first time since early July.

Ann didn’t say anything but I’m sure she thought it was a bit premature especially if it was a long day. In fact we did sit through until four o’clock which was quite long enough for me but I didn’t really start to tire until the bus home failed to turn up and I was stuck standing at the stop for half an hour.

I had gone fairly well prepared, however. I would normally have gone out at lunch time to buy a sandwich but instead took lunch with me so that I could, if necessary, find a quiet spot to have a short nap before the afternoon session. As things turned out that wasn’t necessary. I think I was a bit high on just being back that any risk of tiredness was kept at bay until I got home.

Oddly enough one of my two colleagues was also a cancer patient and was currently undergoing chemotherapy. He has been suffering from what began as cancer of the bowels some ten years ago but the disease has spread throughout his stomach and into his liver. Every now and again he undergoes several days of chemotherapy delivered through a tube into his chest from a tank worn on his belt.

I reckon he must be far tougher than me. When I heard about this and how he is carrying on with his life I felt a complete fraud having been as weak as I was during my treatment.

Marking Up

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!!!

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.

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.

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.

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.

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.

Awake At Last

It’s Sunday and the first day I’ve really been up to writing another entry.

I felt quite good on Thursday, if a little tired, and on Friday made my usual bus trip into Sale and back. It went well but by the time I returned home I was exhausted and slept for about half an hour followed by another sleep for most of the afternoon and a third in the early evening.

That pattern of exhaustion and sleep continued on Saturday. Even though I used taxis on Saturday to shop I barely made it back and slept pretty much all day afterwards.

Today I have felt pretty good. Okay, I did miss a couple of minutes of the Belgian GP but it was only a couple of minutes and I didn’t feel really tired until early evening when I slept for about an hour.

This treatment seems a lot kinder as, apart from the seemingly inevitable constipation, extreme fatigue seems to be the only problem I’m having this cycle. I’m even eating quite well and enjoying my food though coffee does taste a bit odd.Early days, of course, but I am hopeful.

Incidentally on Wednesday I ran into Stephen again & he sounded better than I have heard him sound on all our prior meetings. He had a smile in his voice and sounded about ten years younger. Furthermore he had driven himself to the Christie for treatment.

Let’s hope it’s working for him, too.

I'm Home

I am so relieved to be home already. My treatment regime has been changed and I did not need to stay in all night for the new one.

I arrived good and early, had my blood sample taken just before nine and was talking to Doctor K before 9.30. It was a long discussion and she realised that my tolerance to the platinum based treatment was simply inadequate. She explained that the side-effects were cumulative and that made frightening sense.

I had experienced some dizziness during the first cycle but it had been little more than a nuisance and had passed after a couple of days. During the second cycle it had really knocked me over so it was clear that if it were to be even worse during a third cycle I would probably find it difficult to get out of bed safely.

At first she said that they wouldn’t have any stocks of the alternative treatment and it would mean delaying my treatment for a week but that it did not involve an overnight stay as it took only a couple of hours. That in itself was a great relief and would greatly ease Ann’s anxiety. She left me for a time to make arrangements.

She returned after about half an hour with good news. They had a treatment available today and would administer it during the afternoon. She apologised saying that it would mean hanging about for about four hours until both it and a treatment station were free. I reckon that was a decent deal so I agreed to it and rang Ann to tell her the good news.

In fact the treatment started just after one o’clock, went through smoothly and I was home just after 4pm.

During the treatment one of the nurses who I’ve talked to several times before drifted in for a chat on her way off duty and told me what a battle with the hospital management my consultant, Dr W, had had to get the treatment for me today. It seems the unit where I was treated usually closes after lunch but after a rather bad-tempered discussion he won. Had he lost and my treatment been delayed by a week they would then have had to re-arrange my MRI scan currently booked for next Tuesday as it would have been too early. It might not have been possible to get a new slot before the end of September as the kit is heavily used and he didn’t want things to drag on like that.

As it is the MRI scan is close enough to the end of my three cycles to give a very good indication of success or failure. Ann and I will see Dr. K two weeks today to discuss the results of the MRI scan and my bladder’s fate will be decided.

Tomorrow's The Day

So tomorrow is the day.

I hope they will vary my treatment as I am not sure how I could handle yet another bad bunch of side-effects but if they insist on keeping it the same then I don’t realisticly see how I can refuse to go along with it.

On the positive side the last few days have been pretty much normal. OK, my head is still operating at about 85% but that’s acceptable for most things just now. I’m still very tired but we have handled that and we will continue to do so.

Today we lunched in the Thai restaurant as a treat before our next adventure into the unknown tomorrow.

Better But Not Right

I keep thinking I’m clear of all the side-effects but then something happens to show me that I’m only operating at about 80 – 90%.

I made a couple of changes to my PC and stupidly screwed myself. My screen-reading software stopped working as I had managed to bugger up the settings that drive the speech synthesizer. Even worse, while I was trying to work out what had gone wrong the PC’s speakers also stopped working so I had a totally silent machine.

I did sort it out given time to reflect but it shouldn’t have happened in the first place had I been up to scratch.

Yesterday morning, Thursday, I walked Ann’s guide dog, Penny, down to the vet’s by nine o’clock and left her there to have a tooth out and carried on to the Village for a haircut afterwards. By the time I got there my legs were pretty stiff so I was glad for that ten-minute sit as my hair was trimmed.

I grabbed a coke in Trios and was ready to walk home when the rain started so, without a second thought, I grabbed a cab. I suspect the weather was just an excuse.

This morning I made my usual trip to Sale for the bank and to buy my fish. I had intended to walk the two miles back but my legs weren’t that good and my concentration wasn’t too great and I had abandoned the idea pretty quickly. I can’t have looked too good as people were rushing up and offering me help and I think I needed it.

I can think things through provided I have a bit of time but I can easily get confused when things come up quickly. For example when I was waiting for a bus home one drew in and I asked the world in general what number it was. Three people replied in slightly different terms and for some reason it took me several seconds to unscramble what they had said.

So, I’m functioning but not as normal.

And on Wednesday I’m back at the Christie for my next treatment. I am dreading it.

Dare To Hope

Am I being too hopeful?

I have noticed that my need for pain-killers has completely gone.

I do not spend my day worrying about not being too far from a toilet.

I routinely go for a couple of hours or more without the urgent need to urinate.

Over the last few nights I have had to go to the toilet only twice and last night it was only once.

My penis feels as it did before all this started with no tenderness or soreness.

Given that I have had frequent and painful urination for over two years and that my penis has itself been tender, sensitive and even painful for about a year this is quite a remarkable change. I think it is impossible not to assume that the chemotherapy is breaking up the cancer as I can’t see what else could cause such a wonderful improvement in my symptoms but despite my natural eagerness to assume that I am in full remission and close to the end of this nightmare I fear the verdict based on the evidence of the MRI scan on September 1st will show that there is enough of the damned thing left to make surgery the only safe option.

The more I hope the greater will be the disappointment if I get the “thumbs down”.

Prochlorperazine Is Wonderful

Prochlorperazine is wonderful stuff.

I feel as though I am back from the dead after a couple of days on the stuff. My legs are getting steadier, my sense of balance is almost normal and I can even concentrate fairly well. I have even been able to Google around to find and order a herbal anxiety remedy for Ann from the internet and chase both Sky and Virgin up on the subject of accessible STBs for us. Sky are still thinking about it and Virgin don’t know if their box is accessible or not but at least I could make the effort.

Looking back to where I was on Wednesday my recovery is very satisfactory but I do wonder if I will relapse when I finish this course of medication.

This morning I sensibly took a cab into Sale and visited a few shops on foot in a rather cluttered pedestrian-only street before coming home on the bus. I couldn’t have dared attempt that since my last overnight chemotherapy session.

Mind you, Ann and I are both very worried about my next treatment. Actually I am terrified to think what side-effects I might suffer next time so I really hope they can adjust the regime to something much less harsh.

Of course the real issue is how effective it’s being and I can only listen to what my body is telling me. All my pains have gone including discomfort when urinating and the last few nights I have had to get up only two or three times.

Quite frankly my plumbing is feeling better than it has since all this started over two years ago. I hope that means that most of the cancerous growth has dispersed but of course it will be the MRI scan on September 1st that will give us the scientific evidence so I can only wait and hope.

Dealing With Side-Effects

Today was “top up” day in my second cycle but, more importantly, it was a chance for me to find some solution for the horrible way I’ve been feeling this last week. Angela, the district nurse, had told me to make sure they knew the problems as there were meds that could help and Ann had told me to lay it on with a trowel to make sure I came home with something positive.

My treatment chair was booked for 9.30 which meant I really needed to be there for 8.30 to allow time for my blood results to come through. On the basis of how I felt yesterday I didn’t think I could get there so early but as things turned out I felt reasonably alert and got up about 6.30 which gave me time without having to rush.

By arriving that early I avoided queuing for my blood test as they called my number almost before my backside hit the chair & I was soon on my way up to ward 3, the day treatment unit. There are no beds, just comfortable chairs and it’s a pleasant airy space to sit, wait and be treated.

A nurse came along and started the routine checks of BP, temperature, pulse etc and started asking me about how I felt and I let her have it pretty strongly. She called a colleague & I went through it all again. It was decided that I had better see a doctor before treatment and one of the nurses took me back downstairs where, after a few minutes, I saw Dr. K again. I explained all my various symptoms to her and told her that for somebody who can’t see loss of balance, orientation, sense of direction, attention span and concentration levels is not just a nuisance but a real danger which has made me pretty nearly housebound. I told her that I am having trouble even finding my way round my own home so bad is it at times and she took off to consult a colleague.

Damn it! I even broke down in tears again. I have so little control just now & I just couldn’t help it.

Anyway the outcome is that I have come home after today’s treatment with some new tablets to tackle my vertigo, queezy stomach and also my anxiety. It seems that the platinum based medication that is delivered in the all-night sessions is known to effect nerve endings and she thought that this could be what had happened to my vestibular system resulting in the symptoms I’m suffering.

Dr. K also said she will recommend to the consultant, Dr. W, that it might be better to vary my treatment regime and avoid the platinum. It’s not her decision, of course, but if at all possible I would prefer to avoid another period of feeling like this in my third cycle provided, of course, it doesn’t threaten the outcome of the treatment.

So I came home and glad to be back where I feel safe and secure and where if I do have another emotional outburst there’s only Ann to witness it.

I'm rubbish!

I simply haven’t shaken off the aftereffects of last Wednesday’s treatment.

Even today, Tuesday, my legs are full of jelly, my head is full of sawdust and my stomach is most unhappy. As a result I am tired and generally out of sorts struggling to eat and plodding around like an old man.

Even finding my way around my own home is hard as my vestibular system seems to be really fouled up. For example I nearly fell over in the bathroom this lunchtime. I went upstairs, turned left at the top then left again into the bathroom then right to step towards the toilet. That right turn nearly did for me and I had to steady myself by leaning against the wall. God! I feel so damned useless.

I needed to get out of the house so I got a cab to the village this morning and pottered around doing a little food shopping. It was probably a dangerous thing to do as I got lost half way over a zebra crossing but luckily there was somebody there who set me right. Still, I did feel better for getting out.

This afternoon was one of my lowest points so far. Ann and I both wanted to go to a public meeting of disabled people in Sale town hall but for me it was a terrible mistake.

It didn’t help that the taxi was late and therefore the meeting had started when we arrived so I had to shuffle into my seat in view of a bunch of strangers. It didn’t help that we had been standing for 15 minutes or so waiting for the damned cab so that when we arrived at the meeting I could hardly stand up at all and had to hang onto one of the helpers who showed me to a seat.

However that doesn’t explain why I felt like bursting into tears as I sat there but it was a terrible effort to keep my composure and then on the way out at the end of the meeting as I shuffled along I really did burst into tears. I felt so weak, so useless, so inadequate and I made an utter ass of myself.

Then when we called a cab the operator couldn’t seem to grasp my explaination of where we were and I just had to hang up as I couldn’t deal with it. Luckily somebody we know helped and sorted us out.

It was such a relief to get home and, daft as it sounds, within half an hour I was feeling physically and mentally better thanI have since the latest treatment.

Clearly the toxins are still hanging around in my system and as Ann keeps on telling me I am not in charge of either my body or my mind.

Tomorrow it’s back for a “top up”, just one bag so I should be home by lunchtime.

And I’m really going to stress how dreadful I’ve felt this last few days so I can be given some stronger meds to deal with it.

Strategies

It’s Sunday morning and I feel quite good after a relatively undisturbed night’s sleep.

My main symptom of the treatment this time has been dizzy spells, fatigue and a little nausea and the meds have dealt with those pretty well. There’s still damned constipation but even that may be on the move, if you’ll pardon the expression.

I have been giving some thoughts to my priorities and I shared them with Ann yesterday. Don’t get me wrong; I have made no decisions as I don’t have the facts on which rational decisions can be based but I think I am moving towards a basis for those decisions.

My main priority is to maximise my long-term survival chances and if I can avoid surgery without putting survival at risk then I will probably do so. However both Ann and I need some certainty in our lives, a line drawn under events and a chance to start rebuilding to a new normality whatever that may be for us. That need would suggest going for surgery earlier rather than later as surgery does draw that line.

But what are the facts?

I was told that undergoing chemotherapy would improve my five-year survival chances from 50% to 55%. I suspect that is the official figure but I also suspect that that figure covers a multitude of different treatments, doctors and hospitals from world-class ones like the Christie to Nether Alderly’s cottage hospital. Dr. W, who is supervising my treatment so far says that in his experience chemo is so successful that in a third of cases surgery is no longer necessary and radiation treatment can finish the job. That is highly encouraging and there seems to be no down side to undergoing the treatment except that it really knocks you about physically and mentally.

However I have also read that in 40% of cases treated as described above bladder cancer returns and then the only recourse is surgery. Once more I wonder if that general figure really reflects the results obtained locally and that is a question I will need to ask. A 40% chance of reoccurrence is pretty high and for the first few years at least our anxiety levels are going to remain high from test to test hence the option of going for surgery anyway and drawing a line.

Does delaying surgery in this way actually reduce the success rate of the surgery? Another question for the future.

But now I’ll just get through today and then tomorrow avoiding planning too much and letting my body set the agenda.

The family should be here this afternoon and I want a sleep before they arrive so I have the energy to enjoy their visit. They are off to a caravan in the Lakes tomorrow and the forecast is for rain up there. Mind you, one can hardly be surprised that it rains in Windermere in August. After all, this is England.

The Happy Drunk

Today I’ve been “the happy drunk”.

My legs are like jelly and my head isn’t working too well but despite that I feel pretty cheerful if very tired. I certainly wasn’t up to making my usual Friday trip into Sale to my favourite fishmonger and I’m just hoping I am a lot fitter by tomorrow. Mind you, I have lost my appetite and probably wouldn’t have been able to eat my fish even if I had bought it. By this evening soup was all I could manage.

One thing I have learnt is to take each day as it comes and simply let my body dictate the agenda.

Elaine, the community MacMillan nurse, rang Ann this afternoon. She has tried without success to persuade our GP to prescribe something to lower Ann’s anxiety state. She did however come up with something useful. She says she can get me the top rates of DLA with just a letter from the GP stating that I have cancer.

For those who don’t know what DLA is I will explain. Disability living allowance is paid to registered disabled people by the state to help offset the additional cost of living that disability nearly always incurs. There are two components, a care component and a mobility component. There are three levels of payment for the care component relating to the level of disability and in the same way there are two payment levels in the mobility component. Registered blind people are automatically in receipt of the lower levels of payment for each component.

Cancer patients, it appears, qualify for the highest levels. Seeing how much we are currently spending on taxis each week we could certainly make use of the extra cash.

The Emotional Dimension

I’m doing this as a separate item as it deals more with the emotional issues than the mechanical ones.

When I was waiting for my blood results to come through I ran into Stephen who I have written about before. He was due for the short treatment this week but he was feeling very unwell. After a lot of discussion it was decided to proceed with his treatment but to keep him in afterwards to monitor his condition. His wife and brother were there and clearly very worried about him.

This was going to be hard for Ann too since her friend Jill has gone home and she was going to be alone overnight. She had it pretty well planned out and I said I would give her a ring on my mobile if I could. Sadly the network connection from the ward was unusable and we gave up on that idea. I tried to ring her the next morning while waiting for my taxi home but once more without any luck so when I did get home I found her worried to death and in tears because I was a couple of hours later getting home than last time & she was concerned something had gone wrong.

She feels she does need something to help reduce her anxiety levels as she is struggling to cope just now. Her GP is proving most unhelpful pointing her towards councilling than pills but I am not sure how effective councilling is if you start out not believing it does much good anyway. Much of its efficacy is likely to be a placebo which does not matter in the slightest but sceptics just aren’t going to find it works for them.

The district nurse said Ann should contact the MacMillan nurse she had spoken to before which she did but that nurse seemed focussed on yoga, relaxation classes and councilling too, none of which really seem to hit the spot.

So it looks as if we just have each other and will have to get by.

My Second Cycle Begins

So I have now begun my second cycle and I’m home again and feeling reasonable.

I wasn’t certain, of course, that my bloods would permit treatment this week & feared that I might be sent home again as I was last week but this time I just scraped through.

The whole process is more about queuing than following appointment times so I decided to try to get a head start on the process by ignoring my appointment time and calling a cab when I was ready. So I arrived at the Christie at about 9.25 a good half hour ahead of schedule and joind the queue to have a blood sample taken. I waited until about 9.45 and then moved to Dr. W’s clinic to wait for the lab results to come back. That took about an hour which is about average. Only when those results are available is a decision made of whether or not treatment can be administered safely. The minimum score for white cells is 1.5 & I just scraped in with 1.8.

Then it’s a matter of waiting until a bed is free and that can take hours. I sat around until about 4pm before mine was ready. It was worth the wait on this occasion, though, as they had decided to put me in a side ward by myself so that I could more easily get to the bathroom for my many visits during my stay. The woman patient who had been using that bed was ready for discharge but couldn’t go until a doctor actually signed her off and it took hours for that to happen.

I will remind those in the UK that this is “change over week” when all the new crop of junior doctors come into hospitals and place a huge training burden on the more experienced staff which can seriously impact on patient care.

Anyway I finally got started on my chemotherapy but it was obvious that I wasn’t going to escape as early this morning as I did during my first cycle.

But I did get home about 12.30 and this afternoon the district nurse turned up to administer an injection of something to boost my immune system against infection. I really do not need that to happen again!

Shattered And Lost

It’s Sunday evening and I’m feeling quite good.

Over the last couple of days I’ve cut right back on pain-killers which is a step forward but I do still get very tired at times.

On Friday I caught the bus into Sale, did my shopping and caught the bus back and I wasn’t too bad afterwards but then I think I fouled up Saturday by drinking too much on Friday night. Ann said I got quite weepy but I don’t remember a thing about it. What I do know is that on Saturday I felt shattered and, like a fool, tried to ignore it. I pushed the Hoover round and then set off on the mile-long walk to the shops feeling worse with every step. I actually got lost though as it turned out I was only about ten yards from where I thought I ought to be.

I did my shopping and called in to the café for a coke and a rest and then realised there was no way I could walk home so called a cab.

I was shattered for the rest of the day which was bad as my son, Ian, and his family turned up as did Ann’s friend Jill’s son, his partner and her daughter. Jill has been staying with us for nearly three weeks and yesterday was her last day. Adam and Eva had come to take her home.

She has been both great fun and a huge practical help these last few weeks but it is nice to have the place to ourselves again.

Anyway I have learnt my lesson and drank very little last night so today has been much better.

Rejected!

Today was the day for the first treatment in my second cycle; an overnight stay while the chemicals are delivered through an IV. I turned up just before ten and queued up to have my blood taken, sat around waiting for a meeting with my consultant to discuss the future then waited again for the lab results on the blood.

About half eleven I was called back in to be told my white blood cell count was too low for a treatment today to be safe. As the nurse said, I’ve had a pretty rough time as the treatment has released some nasty bugs into my system & my weakened immune system has struggled to cope. Obviously the antibiotics have helped as I feel better today than I have for a couple of weeks. My body is recovering, of course, but it’s just not up to another treatment this week.

So home again with a week extra to recover. I was home in time to join Ann and her friend Jill for lunch in our local Thai restaurant which improved my mood vastly. Good food and excellent service works wonders.

The Battle Of The Test Results

Things are so unpredictable as I go from day to day with no apparent pattern in how my body feels. I had the pain-killers sorted out by Saturday using a “pick and mix” of three types but it did seem to work and reduced the soreness thus reducing the frequency of my trips to the bathroom which, of course, increased the soreness.

On Sunday morning I ventured out to the local shop to buy milk. It’s normally about five minutes each way but with my brain trying to operate surrounded by sawdust the round trip took half an hour and I was shattered when I got back. I was poor company when the family visited in the afternoon.

On Monday I was just tired but today, apart from the head full of sawdust, I seem much better. I went to the village about a mile away and bought food and drink for a few more days but I admit that I used a taxi in both directions rather than walking as I usually do. With my brain out to lunch walking would be dangerous as I’d probably step out in front of some poor driver. Still it was good to get out.

And today I didn’t need any pain-killers until mid-afternoon as I haven’t been particularly sore or on frequent bathroom visits. Does this indicate that the discomfort actually was a local infection and that the antibiotics have worked?

I’ve had a bit of a battle with my local GP practice. I knew that the antibiotics were going to run out today & I didn’t want to leave getting a further course until the last minute so on Friday I rang the Christie to see if they felt more would be needed after today. They said they would want to see the outcome of checks on a urine sample before deciding and could I ring my GP to organise one being taken and analysed. To be fair to the GP their nurse turned up within an hour and picked up the specimen to take to the lab.

I rang on Monday but the results weren’t back. I rang today and they were so I asked if they could be faxed to the consultant at the Christie. This seemed to cause a problem as “we don’t usually do that”. My attempt to explain why it needed to be done before my next treatment tomorrow, Wednesday, seemed to not sink in & I gave up before I lost my temper and said things I shouldn’t. With my brain in its current state that is a real danger.

My wife, Ann, was fuming, rang and raised hell. The document has now been faxed.

So tomorrow I go back for the start of my second cycle and an overnight stay.

Moan, Moan, Moan

I am obsessed by my penis.

This soreness, this burning pain has gone on now pretty continuously for a week despite the antibiotics and while it’s happening I can’t move further away from the bathroom than about ten minutes and I often can’t wear anything below the waist other than loose fitting pyjama trousers. As a result I haven’t been out for a week.

The problem is made worse because of Ann’s limited mobility. While she has pressure dressings on her leg she can’t work her guide dog so getting supplies is going to be a problem unless my sore willy can be sorted out.

The antibiotics will run out on Monday and, as the NHS doesn’t operate over the weekend, today was the day for organising more of them if they were required so I rang the Christie to see if they felt I should stay on them which they did.

When I told them which antibiotic I had been prescribed they were concerned as they had suspicions that this very goood bug-killer may cause urinary problems for some patients and they wanted a urine sample tested before deciding which antiobiotic to keep me on. To this end I contacted my GP again and arranged their nurse to collect the sample. It will be Monday at the earliest before the results are available.

I had asked the nurse at the Christie to contact my GP directly but it appears they are not allowed to for some reason so there was I, a layman passing messages with clinical content between two professionals. Joined up thinking, folks? How much scop for mis-communication creeps in when this sort of thing happens.

The only amusing aspect to this ( & you always have to look for one) is that more women are taking an interest in my penis then ever before.

Oh, and I have found a tooth is coming loose. My cup overfloweth!

Stephen

When I was in the Christie for my first overnight infusion I met a chap called Stephen. We talked a lot and his courage gives me hope.

His treatment regime began with chemotherapy but instead of the infusions I am having his was placed directly into his bladder. From what I remember reading this form of delivering chemotherapy is used in the early stages of a cancer where it’s the lining of the bladder that is affected. However in his case for whatever reason the treatment was ineffective and he had surgery to remove his bladder about a year ago. Since then he has been coping well with a stoma or, at least, he was until a couple of months ago it stopped passing urine and secondary tumours were detected. As a result to avoid kidney damage he was fitted with a second bag draining his kidneys directly while these new tumours are dealt with.

He has now had three cycles of chemotherapy and his stona appears to be working but they intend to continue with a couple more cycles.

Anyway he and his wife visited us yesterday and Ann and I both found the talk helpful. As Stephen said, he is one of the unlucky ones for whom removing the bladder is not the end of the story.

I expect we may meet up again next Wednesday when we both begin our next cycle.

A Fine Remedy

After a few very disturbed nights running to the bathroom every few minutes and getting no more than about half an hour’s sleep at a time I thought I would try something that has worked in the past when it was thought to be my prostate that was causing problems. I drank a couple of large Highland Parks before going to bed at about eleven and slept solidly until about three o’clock.

OK, the rest of the night was not much better than had been the case on previous nights but at least I had had that few hours of quality sleep and I feel much more alert today as a result.

Single malt on prescription I reckon.

Catching Up

Well, here’s another attempt to catch up with last week’s events. Sorry it is so late but I really have not had the energy to write over the last few days.

Last Wednesday I attended the Christie for my second dose of chemo. This was a quicker procedure and consisted of a half-hour infusion.

I had been told that my treatment chair was booked for ten o’clock and I got there a few minutes early to discover that I should have been there an hour before treatment-time for blood tests. Still, it didn’t seem to put them out too much and I was home again by a quarter to one.

I don’t think this treatment knocked me about in the short-term as much had the first one of the cycle but I hadn’t slept much over the previous night so I was tired and slept most of the afternoon and evening.

On Thursday the real bad time began with a really painful recurrence of pissing broken glass which made me very sore indeed and creased me completely. The pain-killers did hit it on the head eventually but on Friday it was even worse & I was curled up in a ball with agony most of the afternoon. I thought my penis was on fire & it took a mixture of different pain-killers to make me feel human again.

Since then I have been so sensitive and tender that I’m shuffling around like an old man & I can’t get out of the house. And, of course, I need the bathroom every few minutes day and night.

I remembered that one of the chemo nurses at the Christie had warned me that if the tumour did start to break up the debris had only one way out and that I must drink a lot to keep my bladder flushed out. I wondered if the pain and soreness was caused by the debris in some way having irritated my urethra again so I e-mailed her to ask.

She rang me back yesterday morning and was concerned that I might have a slight infection and strongly advised me to call on my GP for antibiotics which I did. So now I’m on two sorts of pain-killers, two drugs which were originally prescribed to help shrink my prostate & antibiotics. I am now getting full value from the NHS.

It’s embarrassing how many women are taking an interest in my willy just now. I wish as many had taken such interest when I was in my twenties.

I had another rotten night last night running to the bathroom so often I’ve probably warn tracks in the carpet between there and the bedroom. I think the longest period of unbroken sleep was about 45 minutes which means I’m shattered.

This morning a community-based MacMillan nurse came to talk to Ann. At last there was somebody to answer her questions & help her deal with her fears and concerns.

It turns out the the nurse, Elaine, is a fellow-magistrate who I’ve sat with a few times.

Mind you, it’s now clear to me that I won’t be able to sit whilst I’m on chemotherapy and certainly won’t be able to if radiation follows or for some time after surgery if we end up there so I have taken leave of absence from the bench. I regret having to do so but if I can’t do the job properly then I’m not doing it at all.

Carry On, Nurse

I’ve been feeling pretty rough over the last few days so these entries are a little older than I would like.

Let’s start on Tuesday with a visit from Angela, our district nurse. She’s been coming to see Ann for the last couple of months to dress her leg ulcer with pressure dressings. Now, of course, I’ve been referred as well.

I think the purpose of the referral is to check how I’m managing any side-effects of the chemo and offer help and support but for us it’s a chance for Ann to talk to a professional she trusts about my condition. As I’ve said before, this is in many ways harder for the partner than for the patient and Ann is pretty much all at sea and needing some direct answers herself rather than the second or third hand versions I can offer.

Angela said she would organise a visit from a community-based MacMillan nurse who should be able to answer many of Ann’s questions and hopefully settle her mind a bit.

I had a brief chat with Angela and we agreed that if I needed anything I would call her. Besides she will still be visiting Ann for the next few weeks if anything comes up.

On Friday afternoon the MacMillan nurse called Ann and they are to get together next Tuesday.

Feeling Rough

It’s now Sunday so several days have passed since my overnight therapy.

It had occurred to me that after a night on a drip feeding a platinum=-based medication into my system I was probably quite a valuable property. I wonder if that’s the real reason why they collected my urine? Mind you, after last night there can’t be any platinum left in me.

I felt much better when I got up yesterday, Saturday, ate breakfast and set off for the village to do my usual Saturday morning shop. I was disappointed to find how weak my legs still were & how my concentration was not what it should be but I did do everything I wanted to without too much trouble.

Half way round the shops I spent ten minutes drinking a coke in one of the cafes but then had more or less to run home with a bursting bladder.

Ann and Jill went out on a street collection for Guide Dogs in the afternoon so I had a sleep before cooking a roast dinner. The trouble is that my appetite has gone & I had to force mine down. By that time I was shattered again so left the ladies to clear up and had another sleep.

By mid-evening I felt great both physically and mentally & after a glass of Highland Park headed for bed for what I hoped would be a restful night but I was to be sadly disappointed.

My darned bladder had me up about ten or a dozen times during the night so the longest spell of undisturbed sleep I got was about an hour and I woke up this morning feeling like rubbish with a swimming head and a seething stomach.

However this may actually have been a very positive development, the all-night bladder relief I mean, not my feeling horrible. As one of the nurses had pointed out to me, if the tumor starts to break up then there’s only one way for it to get out so drink a lot and piss a lot. Well, I certainly did that last night.

This morning was a very slow recovery with Ann worrying that I am not stuffing food down with my usual gusto but after a couple of cups of tea a couple of the pills they sent me home with and a bit of a sit I did enjoy a crumpet with lashings of butter and honey accompanied by another drink, coffee this time.

Anyway honey must be a great aid to recovery as I managed to push the Hoover round quite happily.


This afternoon may be hard work. Around midday Jill’s son and his partner are dropping in and then later my son Ian and his family will arrive. I hope I’m not a useless lump of dead meat when the granddaughters are here.

Chemotherapy Begins

I’ve started chemotherapy.

The day before I was due to begin I was all over the place. I was fairly well briefed by the staff and some internet links as to what was involved but it’s still a trip into the unknown & I was finding that my normal powers of concentration had vanished & I was doing all sorts of stupid things and really making a mess of routine tasks.

A problem with our old Labrador really wasn’t helping either. She had recently developed a loss of bowel control and was frequently making a mess in the house. One such incident every few weeks we could cope with but now it was happening every couple of days & with my likely reduced resistence to infection caused by chemotherapy looming the problem was becoming much more serious.

So bright and early on Wednesday I picked up my overnight bag and got a taxi to the Christie arriving about ten o’clock and began the checks that are carried out before treatment begins.

The first thing is yet another blood test. I swear the whole thing is a cover operation for a nest of vampires, so much blood do they collect.

Now there’s a wait until the lab reports on the blood. The clinicians will not write your prescription for what are expensive medications until they are certain you are fit enough to have the treatment. About an hour later when the results came through there was a briefing from a doctor and I signed the consent forms and then was taken up to the ward.

A surprising good lunch was provided. A beautiful pork casserole with carrots and creamed potatoes preceded by a vegetable soup and followed by fruit crumble and custard. The carrots wer not cooked to death and, surprisingly for a hospital, salt was available. See! It’s not poison.

At “tea time” I chose cod in mushroom sauce followed by jelly and ice-cream. Once more it was beautifully cooked.

A lot of sitting around until mid-afternoon with occasional checks on pulse rate, temperature and BP then the treatment begins.

There are two anti-nausea and anti-vomitting infusions delivered intraveinously. One was steroids but I can’t remember what the second one was. Then came the first of the two chemotherapy treatments. This was a 30 minute infusion of Gemcitabine. This was followed up by some 16 hours of infusions of Cisplatin CT which is delivered from 4x4 hour bags each of which takes a bit longer than four hours and there’s usually about a ten minute gap while a nurse sets up the new bag.

Once the treatment begins your oral fluid intake is recorded and all your urine has to be collected in bottles. So when you need to go you unplug your drip from the mains, take your bottle in one hand and pull your unit behind you to the bathroom and because of the fluid from the drip and the amount you are encouraged to drink these trips are pretty frequent. On the return to your bed you have to remember to plug your unit in again or the batteries go flat. I forgot twice!

I didn’t bother going to bed that night as the steroids they fed me in tablet form at about 9pm kept me awake. Luckily I had taken “The Death Of Dalziel” with me and that kept me going through the night until I started dozing off at about six o’clock Thursday morning

Breakfast was rubbish. A choice of various cerials or toast which was cold.

My treatments finished about nine ‘clock, a final round of BP, temperature and so on, a final visit from the specialist chemo nurse with briefings on side-effects, diet and so on, some anti-nausea and anti sickness tablets to bring home with me & I’m on my way.

I got back here at about a quarter to eleven to find myself in the middle of our pet Labrador’s final hour.

The vet arrived shortly after me and put her down as I held her. Ann and the vet had had a long discussion that morning and agreed there was no other answer. A damned emotional day for us on top of everything else.

As for my condition after treatment, I was tired and had a couple of naps durinnng the afternoon and evening but apart from that I felt fine and after a stiff whisky I went to bed about my usual time and slept pretty well.

Ann has an old school friend staying with us and Jill is a great support. She is sharing the housework and providing a useful emotional support and a great distraction for us both so there is something in our lives besides my damned cancer.

As for today, I did feel a bit sick in the night and a little nauseus this morning but the meds have sorted that out. My legs are a little unsteady & my concentration is shot. Earlier on my throat was dry and I had a tickly cough but that seems to have gon.

I did go to Sale on the bus this morning and did most of the things I had planned but I grabbed a cab home rather than walking or using the bus & by about two this afternoon I was feeling shattered and slept for about half an hour.

It’s Ann who has the real problem in that she wants to be informed but doesn’t want it to dominate our lives which gives the problem of knowing how much we should talk bout it and how much is sheer self-indulgence on my part.

Hot and Boring

Yesterday was an utter bore. I spent the morning in the Christie having my renal function tested. To be fair, I didn’t actually have to stay there but as the taxi there and back is £18 coming home between different stages of the testing wasn’t an option.

Just before 10.00 they took a blood test then injected me with a mildly radioactive liquid. After two hours they took a further blood sample and two hours later a third one. Analysis of these samples should show how well my kidneys flushed out the stuff they injected me with and therefore what form of chemotherapy my system can tolerate.

I gather that fluid intake is important so I drank lots of coffee then as it got hotter and hotter in there I changed to water. By the time I left at two in the afternoon I was peeing for Britain.

I wrote earlier about what is currently my five year survival rate of 50% and speculated on how general factors of age and fitness could help push one into the right half of that statistic & yesterday as I observed other people coming and going I had the unworthy thought that most of them sounded much older and frailer than me. Just how selfish can one get!

A Sort Of Calm

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.

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.

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.

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.