More Good Times
January was pretty uneventful, but it was all leading up to my month long trip to New Zealand in February. I had taken my medication with me but my bloods weren’t looking great so I landed in Sydney and was greeted with an email telling me that i was to take a month off from the medication. I was quite nervous to take a break, but the side effects were increasing in their effect on me. I bounced on through to Auckland where I stayed with a friend for a few days before joining a 19 day tour spanning both the north and south islands. I had a great time sailing, black water rafting, visiting Hobbiton, taking a helicopter flight up Fox Glacier, floating around Milford Sound, riding on a jet boat, white water rafting… I also did my first skydive, bungee and a couple of canyon swings. I loved all of the adrenaline sports! I found it very liberating know that if I put my mind to something then I could succeed. I sent a postcard of me during my skydive to my medical team to show them what they had helped me to achieve. They were so happy for me that they asked to use the photo in talks about their work!
In March I had my first visit to the Royal Albert Hall – it was a charity event for children with cancer. I loved the venue and the music line up was Noel Gallagher and Damon Albarn! Later on in the month I also had my first visit to Dubai to catch up with a friend. We lived it up mainly due to the fact that she worked for the Jumeriah Group so we could get brilliant deals in the hotel restaurants. I experienced my first Dubai Sunday brunch, ate cheesecake next to a ski slope and we went up the Burj Khalifa at night (not all on the same day!) My next trip was to Geneva to visit a friend for a long weekend in May. We mostly just mooched around the city, catching up and drinking wine.
Kidney Problems
Due to the ongoing problems I had with “leaky kidneys” I was referred to a Nephrologist who did several tests and asked me many questions. I told him that my Mum had in fact died from kidney disease so he tried to get hold of her notes for further information, hoping that he could figure out whether my issue was hereditary or caused by the drug trial. Unfortunately Mums hospital were unable to help and as I am an only child who hadn’t been tested before taking any medication, it was impossible to pinpoint. It was decided that it would be best for me to have a kidney biopsy so I went to Guys Hospital for the procedure. There was a room full of people ready to help and check each biopsy under a microscope immediately in order to make it all fairly quick. I had to lay on my front and the procedure was performed under local anaesthetic – this had to be administered in several stages becoming deeper with each pass, which was pretty uncomfortable to say the least. I then had tiny slivers cut from my kidney – they needed 3 slides and ended up taking 4 snips to get all of the cells that they required. The anaesthetic was wearing off towards the end and I was becoming more aware of the pain from each cut. Finally it was done and I was to go to recovery. I felt reasonable and they told me to flip over on to my back. It was when I tried to move that I realised how much I actually hurt. It took me a couple of attempts to turn over and I nearly asked everyone to help me as I was shying away from the pain. Once on my back, all was again ok and I had to lay completely flat and still for 2 hours followed by a further 4 hours where I could be slightly propped up. There were no stitches involved so the wait was to make sure that I wasn’t bleeding internally.
I soon got the results and was diagnosed with Nephrotic Syndrome. This means that my kidneys do indeed leak protein through their walls, weakening them and potentially leading to kidney failure. A symptom is swelling, particularly in the lower legs – that would explain that then! I was prescribed an ACE Inhibitor (who wants their ‘ace’ness to be repressed??) in order to hopefully combat the protein leak. It seems to be working and I have been told to keep taking it indefinitely. It’s hard to decide what feelings I have about this – did I inherit this from my Mum and was I “lucky” to have it picked up through my cancer care? Did the medication that I took cause me to develop the syndrome? Unfortunately this is one of those things that we’ll never be able to tell.
More Holidays!
In June I returned to Dubai for my friends hen party – it was a really good fun time, but I won’t say any more ;o) In July I went to Wembley to see Robbie Williams and the Wireless Festival to see Justin Timberlake with Jay Z. August saw me journey up to Edinburgh for the Fringe Festival where I got to experience many great comedic acts. At the end of September I went away again, this time to Costa Rica where I was lucky enough to see absolutely loads of wildlife and try my hand at white water rafting again along with canyoning and zip lining. Turns out that I love the buzz! I also got to go out whale watching and managed to see a mother and baby Humpback. In November I was treated to a couple of concerts – Editors, then Depeche Mode. I also went away to Tromso, Norway in order to hopefully see the Northern Lights. It was bitterly cold and there was so much snow, but we were lucky enough to see a few green wisps in the air before a storm blew in to town. The year ended with yet another trip, this time to Thailand. The tour group were mostly a nice bunch and there were definitely a couple of interesting characters. We arrived on a pretty little island on Christmas Day then travelled to several more islands over the next few days and New Year.
Staying Mostly Stable
This year I again suffered many times from cellulitis, reaching a total over around 20 times over 2 years. Yes, it did get tedious being on antibiotics for so much of the year, but fortunately they kept working and I managed to muddle through. The side effects I was experiencing were slightly worsening over the year, but I was still mostly ok. I was the only person still on the clinical trial and I made it to a grand total of 26 months – pretty incredible bearing in mind most patient experiences! In December it was decided that although the drugs had been working well for me, they were starting to fail. My body had clearly decided that it had had enough as I suddenly broke out in a red rash that covered most of my torso. There had been a small increase in the size of the cancerous cells that I had and with the severity of the side effects, it was time to come out of the trial. This was a scary time, as it is quite easy to get complacent when the results are the same month after month. I spoke to one of the top guys in the department (such a lovely fella) who said that a trial was still open, but only just, and he recommended that I sign up. It was for an Anti-PD1 immunotherapy that was similar to another that had recently been trialed and had amazing results. I had to have a month free from medication so I had December off and started 2014 ready to have my baseline qualification tests.
I Am Titanium 