h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

Over the last couple of years some people have got into the habit of sending me newspaper articles. They used to be about bees and fibromyalgia... I still get those, but now they can be about cancer and the NHS too. The most recent was a couple of pages from the 5th June issue of the Daily Mail, where a doctor lady with a very similar type of cancer - "small round cell" - (only hers sounds far worse, having spread further) to mine, laid out her experience in diary form. Most of her experience of the actual disease didn't ring any bells with me. For one thing, she's far more upset about it than I am. She cries a lot and I've yet to shed a tear over it. But hers sounds incredibly painful - which I find terrifying. That would certainly make me blub. And then she's only 30, poor little dab, and she was just enjoying a nice life when this disaster suddenly happened to her. I'm 56 and, for the last decade and a half, finding life to be a crock of the brown stuff.

But her experience of the treatment... that did ring bells for me.

Just done a search and found the actual article: http://www.dailymail.co.uk/health/article-2154683/How-having-terminal-cancer-better-doctor.html

It was the part where she says her consultant knows she "thinks cancer doctors flog their patients, especially the young ones, with horrendous treatments until the last possible moment despite incurability" that got me nodding in agreement. Of course, she's a doctor, so her opinion carries a bit more authority than a mere patient, with only their own isolated experience to base a judgment on. I owe her. I was going through the hated chemo in order to prevent incontinence (that was the *lie* they told to trick me into it), but also to keep my brothers happy. Now my duty's done and I'm not having any more treatment. The 4th cycle of chemo was supposed to start next week, but I have a treatment review first and I'll have the satisfaction of telling them NO! And if they get very pushy and pressure me, I'll say yes, but then ring my MacMillan nurse from a safe distance and tell her to tell them I lied just to get out of the office and away from their overbearing methods of persuasion.

Since I last wrote about this in a journal, I've had a couple of alarming run-ins with the NHS:

1) The last (3rd) cycle of chemo. I got a mad nurse. An absolute nut-case. The same nurse deals with you all day when you're in for chemo. This one, as soon as she learned I needed a pillow behind my back to make sitting all day bearable for the trapped nerve in my spine, kept coming over to say she might have to take the pillow away for another patient, if another patient needed it. These pillows are scattered all over the chemo suite, for patients to rest their arm on while the needle is being inserted, ready for the drips. I'm the only one using the pillow for their back. Everyone else has discarded their pillow after the needle insertion. She doesn't need my pillow for another patient. Then, I ask her about the anti-sickness medication I'm supposed to be taking home with me after the treatment. She fetches my notes, looks through them and tells me there's nothing written in them by my Dr about anti-sickness treatment to take away. I ask another nurse to have a look. The other nurse finds the note straight away and says she'll show Gosia. The nut-case returns and says that although my Dr has written in the order for anti-sickness drugs to take away, she's on holiday and the Dr standing in for her hasn't written anything. So what, I say. My Dr wrote it in. Let me have them. "You should have made her write you a prescription, then", she says, "she hasn't written one". This refusal to let me have the anti-sickness medicine went on all day, right up until about 10 minutes before I left (I was the last to leave) then I asked her how to spell her name, so I could take up the matter with my consultant. At that point, she stopped pratting about and got me the medicine. Now I'm pretty sure that the only reason that insane woman is working in the chemo suite, is that she enjoys other people's suffering and she likes to make vulnerable people as miserable as possible.

2) My white blood cells refuse to recover after chemo, so they keep sending me home to wait for an improvement and telling me to come back next week when I turn up for chemo. This time they decided I should get a 5 day course of growth factor injections, to get my white blood cells to increase a bit quicker. The district nurse was to come over and give me the jab. Only they sent her to the wrong place and they didn't give her signed authority to give the injection. I did see her the once, when she told me I'd have to inject myself and showed me where to stab the needle into my abdomen - then I was left to my own devices with the collection of syringes. Sticking needles in myself was horrible. I hated it. I did it every day for 5 days and dreaded every one of them.

Now that's it. It's confirmed: the NHS is exactly the hellish, pointless organisation my instinct told me it was. And I'll do everything I can to avoid it in future. If the pain gets unbearable, I think I'll go out and get hypothermia or drown myself, rather than risk another encounter with that bunch of evil clowns.

...on the problem of the recalcitrant who was being difficult about coming up with the medications, it could be a case of inexperience 'erring on the side of caution'.

...on the other hand, though its unusual in my experience, I have on one or two occasions had problems with hospital employees stealing medications, so I always check for intact seals and count the pills (or whatever).

If you think you may have a problem of the second kind and decide to report it, be careful whom you report to, who may overhear and remember the 11th commandment: "Don't get caught.".

(My Mom recently had a problem with a live in companion settled on her by my sister stealing pain medications.)

Good grief! Don't know which is most appropriate: should I laugh or cry

At least I've managed to shake loose of them now. At the last review I told them I didn't want any more treatment. Told them about the problems - including the mad nurse. They just assumed suitably lugubrious expressions and advised me to continue with the treatment. They sent a letter to the person designated as my GP (a woman I've never met) and sent me a copy, telling her about what was said at the review appointment. It was an absolute crock... unrecognisable to me as the review I attended. So anyway - now it's over and I just get on with my life until the metastases kicks in and the hospice looms. Oh and the community MacMillan nurse visited me. Said she was going to send me one of those "do not resuscitate" forms. This is a couple of months ago and the form hasn't turned up yet. She said that without the form, no matter how many organs had packed up, no matter how diseased and finished you were, they'd try to resuscitate you. And there was a good chance they'd have a go at bringing you back even if you'd signed the form to say they mustn't. Because the forms go astray, instructions don't get passed on. And, most of all, there are a lot of morons working in the NHS!

Best not to think about it