Insa’s Diary – March 2001
Been through first chemotherapy and second bout will hopefully be next week if I have recovered enough. Legs still not moving yet but I have been in a wheelchair (by hoist) and been outside for brief spells of fresh air.
Another tiring day – hair yesterday, gone today. Decided to get it shaved
instead of finding hair all over the place. Bit of a shock for me and my hospital visitors!
3rd & 4th March
Best friend from Germany came to visit. Was again very tired.
Eh – my mood is best described as being very angry. Why can’t I control my movements. For 3/4 days I have had reflex muscle spasms in my legs – it is really annoying that I can’t control them and move myself.
2nd Chemotherapy course will start on Wednesday 7th. I am hoping that it will not be as tough as last time but I still expect that I will be very exhausted again. Please phone if you are thinking of visiting. I am getting into a wheelchair again today so that I can get some fresh air before I sleep for ages – that taxi rank and the fumes have never been so refreshing.
Chemo started on the 7th as expected. Now midway through the course – it has made me very tired again but I am sleeping well at night – which is a good thing. Unfortunately drugs tire me out through the day as well. This makes my new daily physio regime a little more difficult but I am determined to get my independence back so I try to do it even when I am half asleep. I am now pulling rubber bands from the top of the bed, waiting to work my way from the green to the black belt in rubber pulling. Wish me luck.
Chemo ended Saturday, this time round it seemed to affect me mentally. I was very weepy over the weekend! Side effects manifesting themselves in hot flushes and being wide awake at night. Went out to the park yesterday but got caught in the rain! Sun’s out just now, and I’m hoping it will last so we can spend some more time outdoors. Fresh air!! Other news is that there was a so-called development meeting about my mid-term future today. This meant all the doctors, physios, social workers etc discussing how my life is best organised. We’ll have to look into finding a new home as I’ll be in a wheelchair for a long time. The prof said it might be for the rest of my life, but I’m not having that!!! In the meantime though I keep busy building those upper body muscles (I’m moving on to the blue rubber bands today!). Determination is everything!
Sniff. Stewart’s away to work for a couple of days and the hospital have removed my lap-top. Site won’t be updated as regularly – but Stewart will do his best!!!!
Spent 6 hrs in chair yesterday and I am getting a blood transfusion today so I’ll not be up today. Still trying to cope with yesterday’s news.
Went to the gym again today. Managed to use the beach ball to roll forward about 20 times and they helped me do a transfer from my wheel chair to a bench. They did most of the work but it showed me what I need to learn to do. Social worker was round and there does not seem to be any suitable housing in our area so we need to look elsewhere. Also had a visit from the wheelchair man to fit me for my new wheels. Feeling good.
Bad day. My white cell count and neutraphils are low meaning my immune system is knackered – so I am not allowed out into the park – it is a lovely day and I am very disappointed.
Mum flies back to Germany today and Stewart leaves for a couple of days of work in Liverpool. White cell count is back up but my red count is done so I need some blood transfusions – this means I’ll hopefully be bursting with energy. Went to the gym and couldn’t do much as I was very tired and not having done any physio over the weekend it was hard work. My support doctors said that I should get my lap-top back for a while.
Spinal injuries person from the Southern General hospital visited me today – more news on this later. Quite a few visitors and Ian (Stewart’s brother) took me out in the wheelchair for a quick breathe of fresh air. Gym work out was better today.
Very tired today but I’ll need to get my energy to go to the gym. Missing Stewart.
Quite a few things on the news front. Let’s update you on the spinal injuries thing first. They can’t put me in the unit while I’m receiving chemo, but I got some good advice and suggestions for exercises to help me become more independent. They also said that with my kind of injury there’s a 20-30% chance of walking again! Ha! I just have to hold on to that thought_ One of mine and Stewart’s new things to do is scouting restaurants for disabled access. We went to the Kelvingrove Art Gallery for lunch and also had a look at two photo exhibitions. Found out that disabled lifts can be either very well or very badly constructed. My friends Ellen and Kerstin came up from Germany at the weekend, and we went out for a lovely evening meal at a restaurant near the hospital. I don’t think I’ve eaten that much in a long time. Just goes to show what decent food can do!
And the last bit of big news is that I’m moving to a hospice after the next chemo. If all goes well, I’ll be in Hunters Hill Hospice on 2nd April. I’m told it’s a very nice place, and they have internet access in their library. Their nurse/patient ratio is somewhat higher than here, so there’s more individual care. Their physios will keep me working on those transfers (I’ll need to learn how to get into a car as the hospice is nowhere near anything), although it has, at least, a garden (done over by Beechgrove). My wonderful palliative support team are trying to get me a single room again which would mean I could take my harp. I’m told Hunters Hill try very much to make their patients feel at home and give them a sense of normality. That’s just what I need – I’m getting so fed up with being in hospital. As nice as everyone is, 2 months is a long time, and I really need a change of scenery!
I seem to be doing well in the doctor’s eyes so my third chemotherapy started yesterday – a day earlier than planned!! As a result I am feeling tired and am flaking out very early in the evening – because of this four visitors from Ottakars were sent away,sniff. Still trying to work out hard so that my muscles are strong (All the better to hit me with – SK). The sister has organised a relexology / Reiki person to visit me on Friday – I can’t wait. A homeopathic doctor visited today to organise some homeopathy medicines to combat some of the side effects that I am getting.