Tag Archives: radiotherapy

Trip Tips & Treatment

When holidaying you always need certain things to ensure a good trip –

Food – Let’s say it’s a good job there’s a Chinese takeaway opposite along with a pie shop and visitors willing to bring sandwiches and other stuff in.

Accommodation – It’s a bit dated but functional.  A replacement has been approved but has been on and off more times than a er, [insert own suitable phrase here as the only one I can think of is slightly rude and thinking about it is actually the finishing line to ‘up and down more times than a’]

Location – Very good.  If I could get out its within walking distance of the city centre with its wide range of shops, eating places and if the urge grabs you museums and other tourist attractions – like the yarn/fabric/craft shop nearby.

View – Well, whatcha think?

I think it’s pretty good and includes two cathedrals and on a clear day, like now but you also need a good camera, the Welsh Hills.  If there’s a really, really big boat on the River Mersey that can be seen too.  I have to admit without that point of reference I’m be hard pressed to correctly identify the river itself – I mean I can get close but certainly wouldn’t bet my life on it or even money for that matter.

Now that picture is quite deceptive because the glass is coated with a film which reduces glare and at this moment through the little gap of one of the open windows the sun is dazzling off Paddy’s Wigwam ie, the Catholic Cathedral – I think you should be able to pick that one out yourself – and to the left of the clock tower is the Anglican one.

Internet – Let’s not dwell on this.  I was so desperate the other day I even tried the one provided free and remembered why I don’t use it but my own has been so intermittent anyone close enough to hear me mutter would have been forgiven for thinking my mobile broadband provider was ‘For &*^£’s sake’.  However I may be discharged today so although our home one isn’t super fast, or super reliable come to that, it is somewhat better.

And then there are decisions to be made every day, some important, some not so important, some difficult, some not so difficult ie,

What to eat – Well in light of my comments on food above the hardest one in respect of eating anything off the menu is whether I want porridge or cereal for my breakfast.

What to wear – Obviously jim jams in some way, shape or form.  Although the tripper in the next bed who went home yesterday, on a similar basis to me today, we’re less likely to catch a bug at home, got dressed after her morning shower!!!!!!  It’s the first time I’ve encountered this personally and found it quite odd – basically because I don’t even need a weak reason to stay in my PJs and being on holiday is a really, really GOOD one.

However jim jams are not without their own complications.  Somehow by the time I’ve been in more than a week (sometimes sooner) I seem to have acquired a collection of items that aren’t necessarily the ones I wear most often at home (even though I’m pretty sure they’ve been washed) and items that don’t go together.  As we found out yesterday that I could probably go home today B just brought me one pair for today but last night (because I do change them before going to bed as well as after a shower) I ended up wearing a pair of red polka dot pants and pale denimy blue top!  I know not ideal but not too bad I mean I have stopped receiving actual T-shirts.  Ah yes I remember (not fondly) the purple check pants and pale green T-shirt ensemble.  Speaking of pants they are a whole other matter themselves.  We all, well I’m pretty sure all, have our own favourite (or worn more often) knickers or underpants and these quite often are not necessarily items you would want to be found wearing should you get knocked down by a bus.   On Tuesday I was due to have, and did, an intrathecal (into the spinal fluid) chemo injection and was selecting my garments to take into the shower in the morning when I realised that the knickers I’d picked although being peachy and complementing the jim jams nicely weren’t of a ‘hit by a bus calibre’.  This left me with a bit of a quandary – I did have other knickers to choose from and in the end plumbed for a pair that  though they practically guarantee an invisible panty line aren’t a pair I usually voluntarily wear for lounging but it was either those, which are extremely respectable both in style and condition, or a pair with smiling or surprised looking pineapples and lemons on them along with ‘Fruit Salad’ print – just in case you were unsure about the fruit.  And then I had the same dilemma yesterday when I had a bone marrow biopsy.  … sorry I just had to double check today’s as there’s another intrathecal injection later – it’s okay they are fine – I had indeed chosen appropriately.

Treatments – Now there isn’t a huge globbit of information available on treatment regimes for myeloma cerebrospinal fluid (CSF).  The figures say it happens in about 1% of cases but our consultant thinks that figure is on the high side or they would see more here.  Denise, very kindly, provided details of the chemotherapy drugs used there – currently thiotepa and previously depocyte and after that my injections are methotrexate!  It’s basically because we’ve gone for chemotherapy and radiotherapy but let me explain – last Friday our consultant was thinking depocyte and then we said thiotepa which is a drug he has heard of but never used personally.  Then on Monday when I saw the oncologist over radiotherapy, just on my arm I thought, she discussed radiotherapy on my skull and spinal cord too if I wanted a more effective treatment.  Our doctor had looked at this option over the weekend and found studies on 100 patients which showed it in a quite positive light.  However he said that with this complication he would never come across the ideal clinical data whereby 50% of patients were given one treatment, say radiotherapy, and 50% another, say chemotherapy as the numbers of patients just didn’t exist – or I thought ‘not at the same time’!  He was going to review the information the oncologist would provide later on Monday and let us know his thoughts – which were that the radiotherapy looked at good option but along with chemotherapy.  However I couldn’t have both at the same time – the oncologist had said to me that would be too toxic.  The need to get some injections in before starting the radiotherapy influenced the choice of medication.  The oncologist advised against depocyte as it remained in the system too long – one of the things the consultant liked as it would mean less injections, thiotepa although still being looked at and certainly not ruled out, was not readily available and indeed, if I remember rightly, not in the hospital, plus with not being familiar territory was a bit of an unknown with regard to side effects – particularly with having it before another type of treatment too,  and so methotrexate was picked.  It was here, I could have the first one on Tuesday, and it was reasonably familiar – not to me like I’d never heard of it, mind I’d never heard of depocyte or thiotepa Denise told me about them last week.

Speaking of Denise, if you’ve not seen it you need to go look at her comment on ‘B didn’t waste time’ from earlier this week – 22 May.  B was left unsupervised, by me that is, in Day Care on Wednesday as he waited for me to get back from Clatterbridge and collared the passing pharmacist to ask about thiotepa, a supplement very kindly given to me by Janice (as the doc wanted to ensure it wouldn’t cause an issue with either any meds or my kidneys) and pigeons.  I said to the doctor yesterday that if B happened upon him in the corridor he shouldn’t be surprised to find he was being asked about pigeons too.  I explained why and he laughed and replied ‘I think we can safely say I’m not going to find a research paper on that’.

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The beauty of it

The whole aim of attempting to post on Monday was to basically confirm that I was still ‘here’.  However it didn’t exactly pan out – I mean I am still here but the posting bit wasn’t as easy.  So I when I managed to get it to post yesterday I thought that I would make sure I posted every day even if what I posted had no relevance whatsoever to my current medical status.  I fully intended to start today, mind you I fully intended to be the first of the three of us on the six bed bay  to have a shower today and I ended up being third and possibly missing the docs’ ward round as a consequence.

So I’d fully intended to tell you today about why my visitors yesterday looked like this…

(I was swabbed on Monday and tested positive for para flu yesterday – caught from another patient last week I’ll have you know and not from one of my visitors), who thought that the visiting myeloma consultant was a vicar who was in with us so long he must have been trying to flog me something and possibly a little something on suggested treatment.  I was going to do this before I went to Clatterbridge (a hospital just under 14 miles away) for a planning appointment relating to radiotherapy.  Needless to say I didn’t get it done before I was collected at about 1.20 pm.  I’d just, so just I had just emptied my bag of ‘out’ fluid down the sluice) finished my peritoneal dialysis (PD) fluid exchange and hadn’t even packed for my little trip out.  I went for a wee and threw some knitting, sweets and a puzzle book into a bag and set off wearing a mask – to protect other people from me.

We arrived at ten to two for my appointment at half two.  I was shown to a little office, to keep me away from the other patients and staff and well, everybody, and shut in.  As it turned out I ended up speaking to the oncologist from there that I’d seen on Monday at the Royal as she called in for a quick chat when she saw me as she was passing.  The door wasn’t initially shut.

After that I waited, knit, waited, threw up – in the sick bowl I’d brought, on my knitting, carrier bag, the chair, the floor, my cardy and my right trouser leg, waited, waited and waited with this to look at on the back of the door…

There were other more graphic drawings of the male doings but I thought everyone should know where the prostate is and how to poke it.  I had finally got planned – which involved a warm plastic piece of flat plastic being formed into a mask over my tilted back face, flashing my bare bosoms to the three radiographers and being asked questions I couldn’t really answer as with the warm flannel like plastic over my face I daren’t shake/nod my head and couldn’t speak.

I made it back to ‘the room’ in my mask at five oh four pm just as B was ringing me and was offered a drink and biscuits.  This is what I got…

Now I fully admit it could be my smutty mind but that is exactly how those buscuits were on the paper towel.  Either its my smutty mind or I wasn’t the only one who’d spent long hours looking at the back of the office door.

Because of the para flu I ended up coming back in an ambulance which was order for ‘within the hour’.  I got back to The Royal at eight by which time B had gone back home, got changed and called back in, ready for work and my Auntie Ann had waited over an hour as I think she’d thought I’d forgotten to let her know I was back but was way too polite to say so.

And now I have to go to sleep because I’ve just completed my fourth PD exchange of the day – the schedule of which was thrown well out of whack by the afternoon outing – ‘Did you have a good time out girl?’ the elderly lady opposite asked me when I got back – I can barely keep my eyes open but needed to do exactly that while I did the bed time one.  Just as well because I’d been made some toast and cheese spread, the lady in the next bed had accepted the offer but the elderly lady had said no and then asked where her’s was when the health care assistant came back with it – so she got some too – and during the exchange mine made an encore appearance.  I’d blamed the half a bowl of mushroom-y, in a very loose sense, soup at lunch time but maybe it was the intrathecal injection I had yesterday after all.

So tomorrow I may tell you about where we are up to with suggested treatment or I may just show you my knitting.  Don’t panic I threw away the first lot of knitting that got sick on it and fortunately declined the offer of a pasta carbonara from the freezer and settled for toast so it wasn’t too unpalatable coming back.  And now off to get some beauty sleep because, as my husband informed me today, I need it.  This being the reason why I sleep more than him even at the best of times.

Oh, oh and I nearly forgot, that’s how asleep I am, but we had some good news on Monday.  I can reduce the amount of PD I do.  Either my reducing the number of exchanges in a day or the number of days I do exchanges in the week.  I went for Monday, Wednesday and Friday dialysing and Tuesday, Thursday, Saturday and Sunday off.  I knew this would need verifying by B and indeed after initially saying ‘Whatever you think’ went on to say ‘Tuesday, Thursday, Saturday would be better to do exchanges’ because of appointments on Monday, Wednesday and Friday.