Insa’s Diary – April 2001
It’s been a bad few days, I’ve been very weepy again, thinking about life, death, the universe and everything. There was a mixup with the Reiki practitioner and I was sent an aromatherapist instead who was only allowed to massage my arms. It was nice, but obviously not what I had hoped for. Add to that the general side effects of the chemo, the fact that the palliative support team and the physio were on holiday and that Hunters Hill will happen but certainly not tomorrow or the day after, no fresh air for days, and maybe you can imagine why I’ve been feeling pretty low. Well, things are looking up a wee bit with palliative support and physio back from tomorrow, my parents coming up next week, and the visits to the park (we try and catch the sun when we can!). I hope I get out of the hole I dug myself into over the last few days, so watch this space…
I moved today!! They managed to get me into Hunters Hill – the Marie Curie Hospice. It is wonderfully quiet. Still unpacking with Stewart – I seem to have amassed a lot of clutter in my time in Hospital!
Started working out with the physio and had a jacuzzi bath – the quietness is great.
Very bad news – white count went down too far so I need to go back to the hospital (SK – Insa seems devastated) as the Hospice are not able to deal properly with the situation. Aaaaaaggggghhhhhhhhhhhh.
Well, here I am back in the Beatson roasting with a temperature and wishing that I could have a hammock to sleep in so that I could get fresh air all around me. I don’t know how long I’ll be here, hopefully no longer than two or three days. It all depends on how my blood counts improve (No white blood cells = no immune system). If that wasn’t bad enough, I have a throat ulcer – another common side effect of the chemotherapy – it means I have difficulty eating & drinking anything. In here the foods not too bad but the Hunters Hill Hospice seems to have food prepared with a little bit more love and effort. Let me recover from this setback (SK – sidestep not back!) and I’ll keep you updated and let you know when I can have visitors.
After a five-day spell on intravenous antibiotics at the Beatson (neutropenia with added streptococcus infection), getting back to HHH felt almost like coming home. It’s been a bit busy what with all the doctors, pharmacists, physios, occupational therapists etc wanting to talk to me…
My parents are in the country now, they’ve been with me for a few days, now they’re travelling around a bit, but will be back in time for Easter Bunny Day and the next chemo.
My white cell count went a bit haywire (43 instead of the average 7-11), so they’re keeping an eye on me re infections, but the main reason is probably the amount of growth hormone I was given after the last chemo, so there’s nothing seriously wrong. Anyway, I’ve no intention of being sent back to the hospital before Tuesday morning!!!
Since I typed the last bit, I’ve met HHH physio no.2 who got me to transfer from one wheelchair to another with the board from hell (wooden, with gripholes in the middle – for carrying, not for using during transfer, as my sore fingers soon showed me!). It was also a transfer from one soft surface to another which made it more tricky, plus my trainers kept getting stuck in the wheels, but I got there and back again in the end. She left me with lots of homework, pushing myself up from the bed and the chair, but I seem to get a little further up every time, so that’s good.
I have to say the food in here is so much nicer than at the hospital. They made a yummy herby garlicky veg lasagna just for me (wish I could have eaten more, but I’m still finding it difficult after a throat infection which hardly let me swallow anything for five days, including drinks). Today’s lunch was scampi, chips and peas, and even some red sauce with it. Felt like having a pub meal…
Right. Now that I’m here I’m up for visitors again, phone the numbers below to check before you come. If you feel you may be carrying an infection (cold or whatever), please get the all-clear from your GP before you visit – but you know that, don’t you?
Yesterday I had my first hangover in a very long time – from just half a pint of beer (cheap rounds!) Stewart brought in a bottle, a home made pudding and the Billy Elliot video – for a few hours I just forgot I was ill. During the night my temperature went up again – not much, but Ms Worryclogs here only stopped panicking when my mum and the nurses agreed it may have been caused by the alcohol!! Plus a rotten feeling in the morning reminded me of a hangover! Next chemo starts Tuesday night – I am “looking forward” to it with the usual apprehension. Hopefully this time I won’t get so depressed and will keep up my exercises. I can change my position slightly in the wheelchair now with lots of effort & gritted teeth – all I need to do now is learn to do that in the bed – trickier without the knowledge that there is back support ready to catch me. Keep your fingers crossed for me – if you want to visit call Stewart or the Beatson – probably won’t be ready for visitors until the weekend and will hopefully be back at the Hunters Hill Hospice early next week.
Back at the Beatson where some imaginative people had got me a dry cheese sandwich and a plate of potatoes for lunch – and a roast beef sandwich (!!!) and a plate of chips for dinner. Welcome to the culinary world of the Western Infirmary. After a walk in sunny Kelvingrove park I’m now hooked up to chemotherapy No 4 – things that go beep in the night – gone that peaceful hospice sleep. Well I’ll get through this too. Hopefully my blood counts won’t freefall this time and I can stay at the hospice for all the time after this chemo until next chemo – if things go well I’ll return to the hospice Friday pm or Saturday am. Wish me luck!.
Oh well – chemo number 4 ended on Friday but thanks to a transportation mix up I only got transferred back to the hospice early afternoon today (monday). On the bright side I’m back here at HHH and I’m determined to stay the full two weeks this time – al digits crossed. I have now also got my own dinky wheelchair which is a lot easier to move around in than those hospital issue owns. Oh, I have also now progressed to pulling the black rubber bands (what’s after a black belt?)and I’m doing push-ups (single) in the wheelchair. I just wish those muscles were more visible and I still need to put more weight on – more chocolate binges required – teehee! I’ll finish off on that cheerful note (you would not have liked last weeks downbeat mood) and you now how to get in touch if you want to visit, speak to me, mail me etc.
It has been a couple of rollercoaster days – my blood counts are playing up, I do wish they wouldn’t. Currently my platelets are low and they were going to send me back to the Beatson this morning (Saturday) but overnight they rose very slightly so they have decided that they don’t haver to yet. Whites and reds also down but blood transfusions have got they reds up and the whites aren’t down at critical level but as they control mu immune system please don’t visit if you have cold/flu etc. Throat is sore again with possible blisters – however ice cream seems to work well! Watch this space to see what happens now – no-one seems to know quite what is happening to me!