2012

Getting On With My Life

This year started fairly easily on the health front. The side effects had plateaued so I was able to go to work, organise the loft conversion of my flat and still get out to play netball. I even managed to go on a skiing holiday to Austria. It was my first attempt and to be fair to myself, I wasn’t at all healthy enough to do this. I didn’t have enough energy and the altitude was causing me further problems. The swelling in my legs meant that I was in pain whilst wearing ski boots and I kept getting cramp that just went on and on without me having the leg mobility to stretch it out. This was something that I suffered from badly for quite some time – I’d wake up in the middle of the night and leap out of bed then just have to wait for it to pass which could take what seemed like ages. Anyway, I enjoyed the time I had just relaxing, exploring the town, getting massages… I did also manage to get sunstroke one day due to sitting in a bar on the slopes in the sunshine, wearing thermal clothing, in what turned out to be 20 degree heat. Only I can do something like that!

In March I moved into my almost completed flat and a guy broke in but was chased off straight away – there was nothing much to steal anyway as I hadn’t collected most of my stuff at this point. In May I travelled to Washington to do some tourist stuff before heading to a friends wedding in Baltimore. I was so glad to still be able to travel. I took a hospital letter everywhere with me just in case I was stopped with unmarked white tablets at customs, but no one ever said anything. On my return home I had amazing news at the hospital following another scan –  my disease was almost gone and I had just a few nodules that were only a few millimetres in diameter. I was so happy and words can’t describe the relief that I felt. I was always aware that this wouldn’t necessarily be a long term fix as the others on the trial had mostly reached a maximum of 10 months before their disease had started to grow again. I was quietly hopeful, but then I have always been an optimist to some degree. I was also delighted to be told that I now only needed to go for check ups every fortnight.

Lympoedema

I had been referred to the Lymphoedema Clinic as the water retention tablets that I had been prescribed had no effect (as expected, but it was worth a try). I had my legs and arms measured using a tape measure and a machine that calculates volume. My left arm was unsurprisingly bigger than my right (due to the dissection on that side) so I was given a glove and full length sleeve to wear daily. It didn’t really bother me, once I got used to putting them on but when I went out I had to remember not to order any food that you would eat using your fingers as it made a right mess of the glove! One thing that I didn’t expect was how many people would comment on the sleeve (mostly people that I didn’t know) – many asked if it was for RSI and proceeded to tell me about their arm pains. Others just straight asked what it was for so I started to say things like I had been bitten by a shark and it was a bionic arm. I found it quite intrusive and nosey of people so I chose to come up with silly replies. Due to the swelling of my limbs it also provided a challenge when I needed to have blood taken or a cannula for the dye used in scans. I was down to just being able to use my right arm and fortunately a couple of the staff were renowned for their ability to get blood out of a stone. I had blood taken out of the back of my hand and at one point, my thumb knuckle – wow that hurts! I just had to grit my teeth and breathe through it. I also had the CT dye injected manually via a cannula in one of my knuckles – that was also incredibly uncomfortable but I have to admire the skills involved.

Due to the oedema that I was suffering from on all of my limbs I had a lymph test to determine whether my pathways were blocked. This involved having dye injected between my fingers and toes (no, it doesn’t feel “like a bee sting” as they said it would!) and then I was scanned at regular intervals in order to see how quickly it progressed. My legs and right arm responded as normal taking around 40 minutes before the dye got to the lymph nodes. My left arm showed that the pathway was completely blocked due to the disease and surgery that I had previously had. They scanned me and scanned me, then sent me away for a coffee as it was taking so long. I had my final scan just over 2 hours after the process had started. The results of this unfortunately meant that there wasn’t really anything that could be suggested to help reduce the swelling in my legs. I just had a problem with “super leaky veins”.

Throughout the year I had many bouts of cellulitis. It seemed to be in a cycle of 2 weeks of antibiotics then 3 weeks without. It happened so often that I was given a stash of Augmentin so that I could self-medicate when needed. I got used to diagnosing myself fairly early on and I was constantly on the look out for a red mark on my left arm.

Good Times

In July I went on my travels again, this time heading to Italy and Slovenia. It was a lovely and relaxing break with my friend and I very much enjoyed my time drinking prosecco in Prosecco! In August I had tickets to watch an Olympic football match at Wembley Stadium so I had a great time watching the game with friends, followed by drinks and a curry. Perfect. I also joined a friend for an evening of beach volleyball accompanied by rain and wine. I managed to get tickets for the Olympic closing ceremony where Blur were headlining – they are my all-time favourite group and it was just a shame that the volume of the concert was so low. August was a busy month as I helped a friend celebrate a big birthday with dinner at The Savoy, which was all very lovely (and not as extortionate as one might think). September saw another visit to Hyde Park for Proms In The Park where we had posh picnics and prosecco then waved flags to Il Divo and Kylie before the grand finale.

The year came to a fairly quiet close (apart from a very long night of partying on New Years Eve) and I was looking forward to what 2013 had in store for me.