Journal Entries
Hey! Baldy!
Posted Apr 18, 2012
I'm bald. The wig lady took off what little was left and gave me the wig. It's nice and cool without hair. Should've done it years ago
I went in for the second cycle of chemo this morning but it never happened. The blood test I had 2 days ago showed my white blood cells were too low, so they did another blood test to see if they'd increased at all... but they'd actually decreased since Monday, so they gave me the order of the boot and told me to come back next week.
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Latest reply: Apr 18, 2012
Up and down like a fiddler's elbow
Posted Apr 14, 2012
I decided not to have any more treatment after a week of pain and nausea. Started wishing I'd not bothered with the emergency trip to hospital in the first place and quietly bled to death. Nice way to go, I thought... fairly painless and quick. Anyway, I had a treatment review yesterday and the doc has prescribed better sickness and pain control (or so she assured me) and thereby persuaded me to have another cycle of chemo... also radiotherapy. I'd refused the radiotherapy before because they wanted to slice me open and bring my ureters to the surface so that my kidneys could drain into a bag glued to the front of me. Yuk! Not a hell of a lot better than being incontinent... which is what I'll be (or so she assured me) if I don't carry on with the chemo. She agreed I could have the radiotherapy without the disgusting rearrangement of my waterworks. So there it is. The hair is now coming out in clumps so it'll be a relief to get it all shaved off on Wednesday.
Journals may be slow to appear as I'm staying with my brother while this treatment continues and he has a very dodgy and intermittent broadband signal. I've been trying to get on line for days without success until now.
I now have some very important work to do... got to rack some apple wine.
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Latest reply: Apr 14, 2012
From mellow to green
Posted Mar 29, 2012
Feeling sick now. Comes and goes. Had the first chemo yesterday. Got to the hospital at 8.30am, ready for poisoning to commence at 9am... only they'd neglected to get a vital document signed by the consultant and so had to chase about for the next couple of hours trying to find and get the consultant to sign the form. So the first drip went up at about 11am and the treatment finished correspondingly late, at 5.30pm. I was the last to leave by a considerable distance. Other than that, it was okay. Lots of people in for treatment. Must have been a couple of dozen, plus a lot of companions.
Hair's predicted to fall out in about 3 weeks, so the wig lady is going to shave it all off and give me a wig. That'll be weird. Chosen the shortest and nearest to my own hair colour, which is sort of light sandy brown shot through with grey. It'll fool no-one. I looked an absolute fright in most of the wigs. Three weren't too bad, of which one actually fitted me. Surprisingly, they don't do the various wigs in different sizes, so I couldn't say I'll have a larger size in this one that's too small for me, for example.
Got in a pickle with the 2 days of oral chemo they gave me to bring home with me. Mixed the timing of the chemotherapy drug up with the steroid. No time written on the chemo dose, so an accident waiting to happen. Beyond that, they packed me off with a wagon-load of drugs for more or less every eventuality. Also, I have every incarnation of ginger, given to me by a friend, because, apparently, ginger is good for stopping you feeling sick or throwing up.
Had a bit of good news on chemo assessment day (Tuesday). They tracked down my missing PET/CT scans. This showed that the cancer hadn't spread up, as they expected, but had only spread out sideways. I don't think this changes the original prognosis. It just doesn't make it any worse. There's still a metastatic wanderer on one of my lymph nodes and all the rest.
I've told the folks at work that, once I've got Pam prepared to take over from me, I'm retiring. I'm planning to spend my final days playing with the dog and making booze.
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Latest reply: Mar 29, 2012
Busy but mellow
Posted Mar 23, 2012
I can see how this works now. Some doctor tells me something terrifying and alarms me for a day or two. Then, if nothing else changes, I'm back to my usual, mellow self shortly. I don't feel too bad now, which for me, is as good as it gets. And I'm busy. Been to work as usual all the days I haven't been stuck in a hospital. Showing one of the partners how to do my job - so if anything, I've been working longer and harder, coz after I've shown Pam as much as she can take in, I stay a bit longer to get some of my work done. I meant to try to get everything tidied up a bit on Wednesday, but then had to go back to the hospital (one of the three hospitals!) to collect a prescription for the pills that are stopping the haemorrhage...
Every one of the people I've met who works for the NHS, has been a nice person. But the NHS is a horrible mess. You couldn't call it an "organisation". Bill already understood why I tried to avoided going anywhere near any of their establishments, but this last few weeks has been an eye-opener even for him. Let me count the ways:
1) With no resistance after losing all that blood, they put me in a room with three ladies all coughing up a storm (two of whom had already got the cough from the first with the terrible chest infection - all three of them very weak and vulnerable, so they could all make the same complaint). It's taken me weeks to fight off the infection they saddled me with.
2) They prepared me for an anaesthetic in order to carry out a painful procedure, then kidded me on that it wouldn't hurt, so they could get me to agree not to have the anaesthetic... didn't even replace the general they were going to give me with a local. The effect on me of pulling that stunt, is that I don't believe anything that any of them say now - not just the b*st*rds who lied to me and put me through a hellish procedure that's now a source of nightmares.
3) At least 3 of my "local" (they're all about 16-17 miles away from where I live and upto 30 miles from each other) hospitals share staff and resources. So they made me an appointment with a different hospital for my oncology tests and treatment. There, the doctor complained about how difficult it was to do her job of assessing and informing me, when all my notes, scans and test results were at the other hospital and so not available to her.
4) Then they sent me for a scan at yet another hospital. The scan people told me to ring my consultant in 48 when the results would be in his/her hands. I didn't know who my oncology consultant was so I rang the hospital 48 hours later and asked one of my three nurses (yes, I have 3 now and one actually is a Macmillan nurse) and she didn't know who my consultant was. So she told me to ring the secretary of the most likely consultant. She didn't know either, so put me through to another consultant's secretary, who also didn't know. We eventually, by a process of elimination (since none of them could find any trace of me on their "system") found who it *probably* was. Then they couldn't find the PET/CT scan results and concluded they must have been sent to the wrong hospital - a hospital I hadn't even been to.
5) In the meantime, the blood loss is increasing and I'm wondering what I should do, so I ring the first of my nurses. She says she'll find a doctor to ask and ring me straight back. About eight hours later she rings back - at work - and tells me to increase the dose. Then she packs up for a week's leave. This is a Friday. When I get home and check the bag of meds they gave me when I left the hospital, I find I've got 4 days' supply of the pills that slow the bleed, if the dose remains the same - 3 days if I increase it. So it should last the weekend. They gave me no instruction when they gave me the bag of pills and potions as to whether the course finishes when the stuff runs out, or if I should get more. So if I'm to increase the dose, presumably I should get more. It takes till the following Wednesday, what with the weekend and all three nurses being unavailable for various reasons, to get an answer - then I have to go to the second of the hospitals and collect a prescription from one of the consultant's secretaries.
That'll do. The PET/CT scans were eventually tracked down and the consultant might, if they don't lose them again before she gets sight of them, tell me what they show, some time next week, when I'm in for the chemoassessment or (next day) for the chemotherapy.
On the brighter side, my brother took me in for the prescription Wednesday (so neither us did what we meant to do with our Wednesday) and later in the afternoon, I started a 40 pint bucket of beer. The keg of Wherry is nearly all gone. Everyone who tried it really liked the Wherry. I'm going to bottle this next lot. It's a different type of beer and I've added a few enhancements to it, so I hope it goes down as well as the last lot.
Just had an email from my other brother, Andy, saying he's coming up to see us tomorrow. So I'll be staying at Bill's the weekend again. I've hardly been home since all this drama started. In fact, I was critter sitting when it started and I've (mostly) either been in hospital, at Bill's or at work ever since.
There was another drama yesterday, that I only heard about when I finished work and went over Bill's for dinner. It's actually played on my mind and upset me more than this cancer thing. He took his motorbike out for a short ride - just to start it and make sure it was okay after sitting still all winter. And he dropped it. It's a huge brute of a thing and he came off on a cattle grid - got his leg pinned under it and his foot trapped in the grid. He could have been trapped that way for hours (this is on farm track between his house and the road, where there's very little traffic). Fortunately, a delivery van came within a few minutes and the driver helped him lift the bike and escape. Now the ankle is bandaged up... nothing broken. But it could've been really bad. I think it might be time to put the motorbikes away. Big, heavy motorbikes, aren't for old geezers.
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Latest reply: Mar 23, 2012
Reality sinks its gnashers in deep
Posted Mar 14, 2012
Up to yesterday I felt pretty well detached from the reality of what's growing inside me. The blow finally landed when I went for my oncology appointment. The Doc drew pictures of where the cancer is known to be already, where it's expected to go next and how far it's likely to travel. She wrote down its name. It's a small cell neuroendocrine and squamous cell cancer. This is, apparently, one of the worst types - it's what they call "metastatic", ie spreads to other organs - and they don't have to be adjacent organs to be infected. It's a real nasty one. It's already spread sideways a bit and it's touching my bladder, where it's likely to eat through. It may be blocking my left ureter and if the urine can't drain into the bladder, the left kidney will die. It may be spreading up but they need the PET scan to tell them that. The doc said there was a tiny chance of "cure" (she made the quotes sign as she said "cure" and indicated tininess with her thumb and forefinger) - if I agreed to the treatment. This is nonsense of course. I don't buy lottery tickets because I'm not a mug and I guess I'd have more chance of winning the lottery than a cancer of this type being "cured". Such a "cure" might last as long as 5 years, she said. I can only guess at the quality of life resulting from the kind of "cure" on offer here.
Still, the one thing that isn't on offer is the one that would be open to my dog if my dog was in this state. They just can't help themselves. They have to do everything in their power to keep you hanging on, by however thin a thread - however vile your experience of the arse-end of life. You WILL drink the dregs! That's what the NHS/Welfare State version of compassion has given us. You might call my cynical, but people's livelihoods depend on our illnesses, and that's no encouragement to put the miserable out of their misery.
No sudden death happening within the next few days then... probably. It might drag on for a while. So I've agreed to some chemotherapy, in the hope of preventing the incontinence that would result from that bl**dy cancer eating into my bladder - and the dead kidney, of course. Now I'm scared. The chemical they propose to use is called "cisplatin" and they say it's very harsh and "we intend to hit you very hard with it" (the doc's exact words). It'll make me feel sick and ill, my resistance to infection will disappear, my hair will fall out - and it's going to last 3 to 6 months. They should know if it's doing any good after about the 3rd treatment.
I haven't had my hair cut since I was about 20. That was 36 years ago. It's long. They suggest I should cut my hair before it all falls out. They can sort me out a wig. So people won't stare.
Gulp
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Latest reply: Mar 14, 2012
Tibley Bobley
Researcher U170471
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