Friday, September 30, 2016

The Big Move

I'm sorry that it has taken so long to update you on everything, but I feel like a lot has been going on, both on a personal level and medically.

Firstly I was able to go on holiday with Sam to Spain, which was lovely. Due to the fact I had blood clots during my treatment I did not think they would let me fly at all, so, even though we couldn't go further than Europe, being able to leave the UK at all was amazing. The last time we went on holiday was when we went to Corfu in late May 2015, when I was already suffering some leukaemia symptoms - even though I did not realise at the time. So, to go to Spain just over a year after I was diagnosed felt like a huge step forward, and gave me a lot of hope that soon I will be able to put all of this behind me once and for all.

Over the past couple of months I have also had the pleasure to attend two beautiful weddings and catch up with some friends that I have not seen in a long time. So, overall, things have been great.


At the end of last week Sam and I also made a big step forward and moved down to London! This was mainly because Sam has started working down here, but I feel like it has been a really good decision for me as well. Moving away acts as a representation of starting a new life post transplant, which I am very much looking forward to. Whilst I was going through all my cancer treatment I don't think I really stopped to think about how huge and, actually, fairly devastating the whole thing was. It has only been over the past couple of months that I have caught myself remembering some parts of it in a kind of haunting way when my mind wanders a little. However, moving down here feels like starting a completely new slate, so I can begin to really come to terms with what I went through and begin to move on from it.

Medically, things have been a little bit more complex. In some very good news my last bone marrow sample was taken successfully (third time lucky) and I have been told that the pesky Philadelphia chromosome has been reduced from being present in 0.3% of my cells to only being present in 0.001% of my cells. This has given me a lot of hope that we will eventually be able to get rid of it completely.

However, every time I reduced my steroids the nausea continued to bother me. So, to find out exactly what was going on the doctors decided to do an endoscopy to see whether I still really had GVHD or whether it was something else causing my nausea. For anyone that does not know what an endoscopy is, it is when they use a camera to have a look around your stomach. It wasn't particularly pleasant, but thanks to sedation, I don't really remember much of it. Here's a handy tip for if you ever need any kind of medical procedure: If they offer you sedation, always say yes. It makes things a million times easier, and you get to feel a little drunk without the hangover afterwards - result.

Anyway, I got the results from the endoscopy yesterday and it was completely clear. In one way this is amazing news, as it means that I don't have GVDH anymore, so I should be able to come off the steroids and my donors cells should completely take control. However, it has left me feeling a little confused, as I now no longer have an explanation as to why I feel nauseous. It has been suggested that this could be because of an allergic reaction to some of my medication. So, I will have to discuss this in my first appointment at University College London Hospital on Thursday.

In good news, if it is simply an allergic reaction, hopefully we will be able to fix it soon and I can get my life fully on track! I definitely feel like I am getting somewhere now,

Laura xo