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!