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

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

Oh, no.

Bite the bullet with your hair TB. If it is that long could it be used for a wig? Just a thought. If you have to lose it all at least you won't look as odd these days as you might have a few years ago, though I suppose losing your locks is like losing a large part of you - us women set great store by our 'crowning glory'.

I hope you got my email ok. I wish I could say or do something to help but I can't so just keep in touch.

Has anyone suggested you get in touch with McMillan nurses? At least it would give you someone to talk to who has experience and knowledge and can perhaps help with anything you might need.

You are being very brave but I do hope you have someone close to lean on.

Take care,

Websailor

Hiya Happy Nerd, lil and Websailor

I got your emails Websailor and lil. Thank you very much! Sorry I'm slow in my replies. I'm slow in everything I do these days, but I intend to reply soon.

I've been assigned 2 nurses so far. One in each of the hospitals they've sent me to. Both have said they're the same as McMillan nurses and the only difference is that they're not paid for by the McMillan nurse organisation.

It's a damned funny old set up with the NHS. They sent me to a different hospital for the oncology appointment - where the doc complained that she had none of my notes, x-rays, scans or test results because, of course, they were all at the first hospital. Nobody at either hospital had been able to get through to the PET scan people, so we (me and the bruv) were beginning to think the PET scan department must be like that disappearing Scottish village, Brigadoon. Then I got a mystery message on my answer phone saying I should ring Sinead on this 0845 number. No clue who/why/what. It was the PET scan people - a private company that drive a PET scan lorry from hospital to hospital. I now have an appointment for Monday - different hospital, different county! It's nuts. And I'm not to go near any pregnant women or kids after the scan because I'm going to be radio-active from what they're going to pump into me and I mustn't contaminate any ladies or nippers with my nuclear fall-out

Is it just me or is it all completely surreal?

i would question whether the nurses are the 'same' as McMillan. They are wonderful and fully trained with heaps of experience and more personal, helping family as well as patient.

Thanks for email. Have replied.

The NHS does not make things easy for people who are not feeling their best, to put it mildly. A friend of mine had something similar and couldn't go near anyone as he was radioactive. It is only for about 48 hours isn't it?

on Monday.

Websailor

I don't know about the McMillan nurses then, Websailor. That's what they said. I just took their words for it. They do seem like nice enough girls and they do seem to be on my side.

Not sure how long I'll be glowing and causing the surrounding veg and wildlife to mutate The didn't say.

Thank you for the

Off to read your email now

Just had a rummage through the leaflets and booklets I've been given by the nurses and the one with their contact details is titled "Macmillan Gynaecology Oncology Nursing Services". And the two nurse contact names are labelled "Macmillan Gynaecology Oncology Clinical Nurse Specialist". Confusing. They both said they were that sort of nurse but not paid by the Macmillan organisation. Oh well.

Not sure where I mentioned it... might have been in an email, about doctors wasting the almost miraculous gift of antibiotics, but here's a link to the very article I'd recently read:

http://uk.news.yahoo.com/global-health-alert-over-antibiotics-misuse-161312158.html

I have always instinctively avoided antibiotics and there has been talk for a long time of having nothing new to take over from the ones we are becoming immune to.

Some nurses and doctors are reverting to honey and sugar and going back to old remedies that were abandoned with the appearance of miracle drugs, a bit like many of us are going back to basic cleaning materials like soda, vinegar, lemon etc. I would never use an antibacterial cleaner, yet I know people who are obsessed with them.

I did use an antibacterial handwash when visiting my husband in hospital but only because the hospital was brand spanking new and they were hot on them, and gloves. However, after six weeks of visiting I noticed they had become less bothered!!

Perhaps you could ask McMillan about those nurses - perhaps they are voluntary workers?

Thanks for your email. I agree with what you said about the article content but I do understand her feelings about the way people avoid you just when you need them, though I understand that some people do not know what to say or do and can't handle it.

It is the same when you lose someone - many people never made contact again - having not done so it becomes harder as time goes on.

Will email again soon but don't want to overload you, and anyway I am joining three generations of mothers tomorrow two of us recent widows.

Websailor