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

... radiotherapy.

they want to give me three weeks. I'm not sure. but I did sign consent forms. How they expect you to take tricky decisions after wrecking your brain with chemo for four months... dunno.

want the beam to come 'up' from left arm pit, through the collar bone area (where there were a few very slightly enlarged nodes). it'll then hit my throat, for no good reason, and possibly my thyroid, which it may distroy.
The radiation may also dammage my spine, and mean I don't have a functioning left arm.
They say the risks, of thryoid dammage, and spinal cord dammage are low; but don't have a figure they can put on it. I'm a scientist. I don't understand the phrase 'very very low risk', its meaningless.
Asked Dr about missing, then refound discharge letter, mentioning possibility of my having brain lymphoma, he went all unscientific again, and used words/phrase like;
"probably been looked at".
that doesn't mean anything to me.
Should ahve gone with my first instinct and just ripped his throat out, in front of his two student doctors.
instead I just signed the consent form.
Got unexpected phonecall this mornig; free space in the scanner, so back at hospital tomorrow, 9.15, for scan, which is something to do with radiotherapy. may try see if I can speak to someone there tomorrow, as I'm quite unhappy about the radiotherapy plan, more I think of it; and, having thought of it, I think any risk of loosing an arm, is too high a risk.
did bloods yesterday. no idea why. Dr didn't know they'd done bloods, he didn't have results, and no one told me the results; no idea if I'm neutropenic, or low white cells. excellent.

no chemo follow up whatsoever. unhelpful.

May have to barrage my local GP with weekly, then daily appointments, until I annoy him enough that something gets done, about following up this discharge letter, as I've no idea who I'm ment to contact at hospital anyhow.

Just wish they knew how to communicate. perhaps one day someone will invent a really fast, easy effective communication method, I don't know... perhaps call it 'E-Mails'.

went to Surgery today got repeat of eye drop things. they gave me wrong ones.

starting to think treatments all been a waste of time really. I'm fed up with the lot of them.

You need to ask about proton radiotherapy. (I really need to finish writing that entry.) With this much risk and considering all the damage your body has suffered already, surely proton treatment is justified. I don't know how the NHS works, but you should definitely ask (or demand) it. It will minimize damage to the surrounding tissues immensely.

It may mean waiting a bit longer (not that I think you'd mind a bit of a break) but it's definitely worth checking out.


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Aw, crap. The UK doesn't have proton centers yet, but they're coming... still worth asking about.

http://www.theguardian.com/society/2015/apr/04/uk-three-proton-beam-therapy-centres-ashya-king-cancer

I thought proton therapy could only be applied to the head, not to the softer parts of the body. Will read your link and improve my knowledge on this.

Two very annoying journals this morning re health care - yours here, 2legs, and Galaxy Babe's about her mum's carers and the doctor.

You need a project manager, 2legs, to co-ordinate all the different aspects of your current healthcare.

Oh, wait, shouldn't that be your GP? Definitely keep hassling him.

In the meantime, I'm moved to offer up a again. Your crap just seems to keep getting crapper.

Deb

dunno... guesss I was just a bit down yesterday Kinda peed off there was no follow up to chemo;

Today after scan etc., spoke to receptionist, got to speak to one of the chemo nurses from the day care unit, who said I should have a follow up chemo clinic type appiontment...... - I don't... apparently she's gona hastle someone who I'm not sure who she is, who's going to do something

Differnt hospitals in UK work differntly; m ost of teh people I talk to online, who've got lymphoma and currently ungoing treatment, have a keyworker they see weekly, or fortnightly... no idea if I'm ment to have one, if I do I've never seen her/him

Well, went in today crack of dawn

Had my death-mask made.

which. was very cool

Hmm. possibly inappropiate response to such a ting.... they're all like 'this will be unplesent and ... bleh bleh bleh' and I'm like... 'yeh whatever'

So... they get my shirt off insist I remove the purple collar luckily I'd not put my ribbons in my hair, or worn much chainmail today or... other bodily ... attachmnetns

anyhow, get me on to the scanner bed thinggy, lay me out......

Then drape this warm plastic over my face Oo.... sucha gorgeous feeling of bondage.... feeling it being tightened over, then to skin tight all over my face, tops of my arms/shoulders, and chest, down to about the level of my nipples...

then they attach it firmly to the scanner bed/thing Oo ... MMMMM....

hten they start sticking stickers and things onto the outside of the death-mask, and, one nurse... a female one... was... doing something.... at, basically the level of my nipples, which seemed to involve her, sort of pushing something on/rubbing it across yeh.... I know... I cna't help it though

Then they shot me in and out the CT scanner a few times, and I was done W came back in and they removed the death-mask

Apparently scanner isn't big enough, to take the size of 'cast', so got to go back Wednesday to be re-scanned

got the itinary for my radiotherapy; I get about a three week 'break' between now and when it starts (three weeks form MOnday I think; of course, thanks to their not being able to communicate; I don't get given a copy of it myself. they only provide a print copy, which William's taken home, so he can type it in, and E-mail me.)

15 zaps, and 3 sort of I guess clinic appointment days during it so it drags out onto a forth week

Still wanna find a Dr to talk to about the actual risk of potential side affects, of the chronic kind.... but at least I've three weeks to do that, also need to follow up the non-existant chemo follow up appiontment, and, trace the missing discharge letters contents, and whether its been followed up apon or not.

Really tempted to find a private clinic I can go to, over teh next few weeks, to get bloods done, and get a full picture myself of endochrine stuff, as the hospital endochrinology are just opperation on geological timescales with that; they've never even mentioned the SIADH, so I'm guessing they've never seen teh discharge letter; discharge letter didn't give any actual indication how they disagnosed SIADH, so that may still be spuriors; but, it fits in with many symptoms and signs, so well, as well as tieing in with the addison's thing, beging pituitary related, tieing in with my head trauma back in 93/94, that I'm practically convinced just by patient presenting symptoms TBH but bloods to confirm it would b enice; if I leave it to hospital, I'd not be gettins such results until mid next year

at least I might recover a bit from the chemo, before zapping beings; it'll be five weeks after my last infusion, by the time it gets going - If I'm feeling half decent, in a week or two, I'm taking William away for the weekend.

new bed here... is new curtains arrived today; but need to get new curtain rail, despite what it said, on website, I can't see no way to afiz it to a pole, type rail; no way to affix rings to teh curtains, so looks like we'll pop along to DIY store some tim e this week, after I've measured up, get a standard rail, and I can put that up, I guess...

new bedding, duvets pillow cases, etc., finally dispatched, so hopefully they'll arrive soon But... MMM... liking the new bed a lot, even without teh other bis for it... especially if W continues doing things as .... he did last night befor ebed.... to me damnit... I'm way too passive when I'm this week and feeble

one side affect though... repositionging the bed... it seems infinatly closer to the l leather bbraided cane, from where It hangs, and ... hmm. yeh, that's such a better position for the bed

Asked nurse some questions I wanted answering, and got answers that were not answers. yet. again. - "your not neutropenic so don't have to worry about the sterliasing/excessive handwashing , don't need to avoid certain foods"., followed immediately by "yes you still need to monitor temp for infection, and no, you can't take paracetamol"... I can't quite figure out how both coul be true at teh same time... either I've gotta still be ultra cautious about infections, or I haven't....
Guess I'll end up going ahead with radiation now. just see what's lef of me at the end, and try build that into something if I can.

found some proper scientific papers, concerned with dammage to healthy tissue, from radiotherapy ahh... numbers Hmm.... looks like, for the purposes of where I'm recieving my rads, I might as well basically be considered to be a female breast cancer patient, as all the papers, are concerned with that, really, as its the same genreal area, for both that, and where my nodes hav ebeen, albeit, in me, its higher up, collar bone, armpit, etc rather than directly in chest area cool its missing my heart entirely, and the nominal lung affect, really, isn[t gona be 1/1000th, the affect I've already given myself by twenty years smoking, so I can ignore hear and lungs, I guess; anyhow, I've already got a big increase in lung cancer risk, from being on the bleo chemo drug and, I got it wrong its not the spinal cord, its gona hit, its the bracchial plexus, err, however its spelt, luckily William reemmbered that, my chemo brain didn't - dr said it'll miss the pineal spinal cord, which is rather good not sure to what extent it may affect osophagus and pharynx though, as well as thyroid, they're a bit wild card, ATM, thinking more along lines I'll try arrange meeting with radiology once they've had their MDT meetings, and decided for final, on exact dose, direction, nature, and type of radiation etc, as I think that was still up for discussion (one assumes based on scan I'll now hav e Weds) looking more likely now I'll go for the radiation, the sort of area we're talking, in terms of percentage likelyhood of dammage perminant, to brachial plexus, is circa 1%, with around 60 GY radiation; last number I saw; albeit a long long while ago, was that I was due for circa 30 gY, which, is clearly half the 60 GY dose that is more common for female breast cancer patients damnit... I cna't even do cancer masculinely I so should wear a dress to my radiotherapy ... or the cute teddy..... or, perhaps ... hmm, the corset might get in the way a bit, actually, of the death-mask more background readig to do today.

two letters from hospital today, one from months ago, so, of no use whatsoever, (clinic letter), and one cancelling the 10.30 AM opthmology appoitment in the middle of radiation, and replacing it with one at 8 am; which we can't get too, as buses don't run that early shall have to ring them to rearrange, and find a time that times in better, with the radiotherapy on that day too; there really isn't anything to do at the hospital for 8 or more hours waiting ; there isn't a single outlet that does drinkable coffee in the hospital for a start and, by then, middle of radiation I might be ultra-fatigued/ill onwards and upwards, to insanity and beyond, to be broken and bent before rebuilding commences