Avastin trial at The Royal London & Barts:
I’ve talked briefly about the Avastin trial that I did from September 2012/13. This took place on Ward 7a at Barts Hospital. I have very mixed feelings about that time as it’s been tinged by the anger I feel towards the care I received from The London. I am very aware of the fact that at least some of my frustration comes from the fact that it was my Dr at that hospital who was the bearer of bad news and if I’m being rational, it’s unfair to hold that against the hospital. However there is far more to it than that but it does mean that some of my memories of that time have probably been slightly warped.
Anyway, as I’ve said above, the Avastin trial was a year long and consisted of IV infusions every three weeks. Claire accompanied me on most of these trips and Andy and my mum joined me for some of them. Ward 7a, the chemo ward, is not the most friendly of places. It’s very clinical and I felt quite anonymous there – just another patient, another number, someone to tick off the day’s list. The nurses often struggled to find my veins and so getting a cannula in was fraught with difficulty. More often that not I’d find myself apologizing for my bad veins and was always terrified that they’d insist I’d have a semi-permanent port fitted to save time on treatment days.
On one occasion it had taken several goes to get the cannula in and I began to feel very woozy. Claire was with me and I didn’t want her to worry so heard myself saying – it’s really fine, I just feel a bit fuzzy. At which point the nurses had put my chair right back and were giving me oxygen as I was clearly about to faint or be sick. Thankfully I did neither. Once I’d recovered and someone had at last managed to get a cannula in I realized that Claire was looking a little shell-shocked. Apparently my reassurance that I felt ‘fuzzy’ was not as comforting as I thought – to be fair I may have said ‘fizzy’. I think I probably sounded a little fuzzy too plus she says I wasn’t a very good colour.
I’m convinced that the nurses on ward 7a thought we were quite peculiar as we often sat and giggled and were generally fairly irreverent about the whole experience. It doesn’t take a genius to work out that we often found that if we didn’t laugh we’d cry but on the occasion of the ‘fuzzy’ attack I think we struggled a little more to laugh as neither of us do very well when I wasn’t actually feel very well. It was much harder to pretend that sitting in chemo ward is anything other than pretty grim.
Funnily, even looking back now, I do have some fond memories of my Avastin year. It’s also when Claire and I established some of our many ‘rules’ about when it was alright to relax and have a cup of tea and bar of chocolate. For some reason this was only allowed to happen once I was properly plumbed in and the treatment was going in. The moment it started, Claire would rush off and get us cups of tea and pull out what appeared to be an endless supply of Dime bars from her bag.
Treatment at The Marsden has been very different. I went to the hospital on Wednesdays and Thursdays every two weeks. The treatment was done in 6 week cycles and so on weeks 1 and 5 on the Wednesday I had blood tests, the nurse checks my blood pressure, weight and temperatures and I saw the doctor and then went for treatment on the Thursday. Week 3 of the cycle was basically the same but I didn’t have to a blood test on those weeks.
The treatment was given by IV infusion so the nurses have got to get a cannula into my arm in order to administer the drugs. Despite being extremely squeamish about needles when I was little I have genuinely become totally used to this process. I can now even watch when they put the needle in and poke around. They often had to plunge my hand in hot water for a while first so they can actually see and feel my veins and on some occasions they’ve had to use a magic vein-viewing machine which I think is amazing but I’m not sure the nurses love it as it means they’re having to cannulate me at an odd angle. Each nurse was allowed two goes at getting the cannula in and mostly this is more than enough.
A lot of them did it on the first go but occasionally it all goes wrong and on one day it took 5 or 6 attempts and my arm looked pretty battered the next day. However, despite the discomfort of it all the nurses were always phenomenally kind and I had every confidence that they’ll get the needle in eventually so never got frightened that I won’t receive my treatment. When I did the previous trial I was always terrified that the very clinical but not terribly compassionate nurses would take issue with my bad veins and not let me have my treatment. I realize this isn’t terribly rational and in fact it’s probably counter-productive as I’m convinced that when I don’t have great confidence in whoever is wielding the cannula my veins follow suit and scarper.
Since the move to The Marsden the quality of the chocolate consumed by Claire and I improved. We figured that in that we were hanging out in Chelsea a Dime bar just wouldn’t cut it and so my Dad became the provider of posh chocs for hospital days and this added a touch of glamour to our Thursdays.
Whilst I’m happy not to being having so many hospital appointments since coming off the trial and it’s very nice not being constantly poked with needles there are bits of the routine that I miss. I miss Claire and I selecting our lunch and chocolate for the occasion. I miss the nurses – they really are that nice and I miss the routine which somehow made me feel secure and that like I was actively doing something.