Wednesday, March 29, 2006


I was sent home from the hospital on the Friday evening. I really don't remember that weekend. I was very groggy and uncomfortable. My shoulder was very stiff and I was walking around like a hunchback: I didn't want to stand upright because it pulled on the stitches and was uncomfortable. Having a bath was awkward because I couldn't get the area wet - so I could only really wash my lower half and I couldn't get out of the damn bath once I'd gotten in it. My bath is a deep enamel one and requires strength in two arms to push oneself up to standing position to clamber out. My mum was having to help me wash and help me get out. It must have been strange for her to be bathing her daughter again - and to have to see my adult body and know that it was diseased and was going to be cut apart. The flesh she gave birth to. I often sat on the edge of the bath and lifted my legs over the side because I was so unsteady on my feet -- and there are lots of hard, pointy, sticky-out-y things in bathrooms to impale oneself on. I couldn't wash my hair either because we have no shower and I couldn't bend over to put my head in the sink or lie back in the bath. So I felt all grimy and horrible. The anaesthetic had left me feeling quite nauseous on and off - especially when moving around. I think I did lots of sleeping. Getting out of bed was pretty awkward too. I ended up rolling sideways to try to egt out - that, or using my legs to lever myself up. Noone tells you that things like this are going to be a problem! I couldn't get into clothes. I couldn't get on a bra or a vest top so I was wandering around naked under a button-down shirt - a little chilly! My mum went out and bought me a nightshirt that buttoned all the way down the front but I had to be helped into that too. I barely went out of the flat at this time - I was so unsteady on my feet. My dad kept helping me to try and straighten up but I couldn't stay like that for too long.

Then, when it came time to change the dressing, my dad did that ( I should perhaps say here that my father is a university lecturer in the area of landscape - absolutely no medical background). I was standing in the kitchen (quite why we chose the kitchen escapes me now - it made sense at the time!) and dad unwrapped the dressing kit we'd been given. Noone had showed us how to do it but there was a plastic sachet of saline in there and lots of gauze squares. First though, we had to get the old dressing off - which was actually transparent, plastic film called Tegaderm which meant you could see the incision and the stitches through it - that really made me feel a bit peculiar. But the wound was a little semi-circle about an inch across. It was stitched inside so you couldn't see the stitches - just the ends of them at either end where a 'tail' of the thread stuck out and had two beads threaded on it - one round and one square bead. This looked totally odd to me. But it's left a very neat scar with only the incision line - no stitch marks. There was also an inch and a half incision along my neckline where they were supposed to put the tube into the vein and finally a third, tiny incision with a stitch in, between the other two incisions - which I was totally surpsied by. I'd been told there would only be two incisions and noone explained what it was about and for some reason I did not ask. Anyway, we ended up pouring the saline all over the area to try and clean in - of course, it went everywhere - it was running down my body: I was soaked and then very gently dabbed with the gauze and then stuck another dressing over it all. I was shaking / trembling by the time he'd done it. It took so much self control - I didn't want it to be touched - it was painful and scary. It was a hole into the inside of my body and I was trying to work out how to live with the uneasiness that caused me and I didn't want it messed with any further. But we did it and I sat on a chair in the kitchen to recover - limp and dishrag spring to mind.

After the weekend I was still really groggy and kept sleeping all the time, my shoulder wasn't feeling any better and I was still doing my hunchback of Notre-Dame impression. On the Thursday night I went to bed pretty early - I wasn't feeling too brilliant - make that even less brilliant. I felt a bit warm. I woke up at three in the morning - I was going hot and cold. Bad news. When I started chemotherapy one of the warnings I'd been given had been to keep an eye on my temperature because one side effect from the chemo is falling white blood cell counts and these are what protect you from infection. If you get an infection then your body is less able to fight it and if my temperature went above 38 degrees centigrade (100 degrees fahrenheit) then we were to ring the hospital PDQ. I had a thermometer next to my bed - guess what? You got it, 38 degrees c. Next problem, getting the attention of my parents asleep in the next room. I couldn't get up - I didn't even try - I tried calling out but I could barely make any noise. I started trying to throw things at the wall. After a little time, my dad heard me and came in and my mum came in. We took my temperature again - still 38 - they fished out my record book that showed what treatment I'd had and gave the warning signs to look for. We decided to wait an hour and take the temperature again as per instructions. My parents sponged me down with a damp washcloth. I was shivering and on fire at the same time - I was shuddering. When we took my temperature again it was still 38 - we rang the hospital and they told me to come in to A&E and the oncall doctor for the oncology ward would check me out. My parents got up and dressed and called a taxi. They bundled me into a mixture of clothes. I was wearing a night shirt tucked into scabby tracksuit bottoms with a ratty cardigan over the top and wearing felted wool clogs and I was shaking. They took me to the hospital.

Tune in later for the next instalment of this saga - it lasts for days so it'll go on a bit: you've been warned.

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