Insa’s Diary – May 2001

Insa’s Diary – May 2001

2nd May
After some more platelet transfusions I’ve managed to get all those blood counts back to normal, and I’m still at the hospice! I actually managed to go to a friend’s wedding (well, the registry office ceremony anyway) on Monday, and it was lovely! Mind you, getting to the wheelchair entrance was a bit of an adventure as it led over the Park Circus cobblestones… We got there by black cab. The first driver didn’t have much wheelchair experience as he almost had me lying flat on the road trying to get me in – very scary! The second one was a lot better. He also left Stewart a bit more room to sit by positioning the chair in a different way! I got all dressed up for the wedding, too, so maybe you’ll get a picture. What else is new? I had a visit from Beccy, a penpal from South Africa who was up to see relatives. Yesterday the nurses took some of us out to the park to feed the ducks as it was such a nice day. Quite a bit of excitement then, as you can see. Plus I’m back to some hard work physio, transfers and upper body training. They do keep me occupied here…

8th May
Well here I am back at the Beatson for Chemo Nr 5, forced to share my room-mates choice of TV – will my tapes & CDs be able to drown out crossroads & neighbours? Food hasn’t improved since last time, so the prospect of a Tesco almond croissant for breakfast is simply wonderful – Stewart does really well in getting treats for me. We had a delicious picnic in the park on Sunday – ending in a giant slice of Peckhams finest Death By Chocolate, yum!. Other news – my platelets went funny this time so I needed platelet transfusions last week – they went down to eight which is rather worrying – now at 100ish. My white cells fell but not to a critical level – sheer determination and platelet & blood transfusions meant that for the first time I was able to stay out of the Beatson between Chemos. I got a whole list of new exercises to strengthen my upper body…including music : I’m getting a knee harp, hurrah! Thank you Starfish. Well as I write this my loely Irn Bru coloured chemical is now on drip and this is the chemo really starting. They have changed the regime and altered some of the drugs so they think they won’t have to give me the growth hormone to stimulate white cells. Will this stop my white cells from dropping too far? Will I get de-dripped to get some physio or some fresh air? Will they get a celebrity chef to improve the food? Will I stop sounding like the end of a Batman episode? Who knows? Join us soon to find out what happens next!

16th May
Chemo no.5 kept me in hospital for two extra days due to some side effects and complications. I was put on an extra bag of chemo drugs and IV antibiotics. Physio? Trip to the park? Nope. I missed out on all the nice weather! Back at Hunters Hill now. It’s been a very strange couple of days. Basically, I couldn’t stop crying. Frustration hit in a big way. I was told early on that this would happen, that I couldn’t be happy, smiley, positive all the time, but until it hits you, you don’t know how low you can be. The nurses were great, holding my hands, listening, shedding a tear or two themselves. It just all came out, not being able to walk, being stuck either in a bed or a wheelchair, facing the scanners again just after my birthday (I’m no longer in celebratory mood, more scared), suffering from those flipping leg twitches, thinking of wheeling myself into the duck pond just to see if the shock would click my spine & legs back into function, etc etc etc. Mind you, now I’ve let some of this out, I feel better. More relaxed. I’ve had a visit from the hospice aromatherapist (head massage!lovely!) and hypnotherapist (relaxation exercise!great!), and they’ve offered to let me talk to their shrink. I might. Well, now for the really big news: Looks like we’re getting the flat in Clydebank, the one our social worker really wanted for us! If all goes well, the nurses will take me up in the hospice minibus to have a look at it (taxi’s too expensive, and I still have to learn to transfer into a car). It sounds so wonderful. Thinking about what I will be able to do there (my own cooking for starters –ooh, bad pun!) will be one of the things to help me dig myself out of my depressive spell this time. Let’s just hope I get all the physio I need so I’m stronger sooner because that will mean I can move in! That was lots, so I’ll leave it at that for today. More soon…

26th May
Shortly after the last update my white bloodcell counts went really really low, and I was very worried I’d have to go back to hospital. Yet again, I managed to hang on by a thread and stay in the hospice. Although again, it meant missing out on trips to the park because it was too hot and I could have got a temperature – which I managed to do a couple of days ago just by sitting in a sunspot at the window! Good news of the week is that my harp has arrived! It’s beautiful! I’ve been playing quite a bit already, although I always have to stop when I get those leg spasms, and that is really annoying!

Stewart has now seen the flat and it seems fine, but we’ll need to get rid of all the carpets as they’re somewhat threadbare. We’re thinking of replacing them with laminated flooring as it will not only look nice but will make moving around in the wheelchair easier.

I’m still not looking forward to spending my birthday in hospital. I’m just hoping they won’t make me stay over the weekend because that’ll just make me more nervous about the scans. If they let me go back here, at least I’ll get a proper rest beforehand. Well, we’ll see…

29th May
Moved back to the Beatson for Chemo no.6