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.