I'm a little daunted at the blog post I'm about to write and as such as I'll try to be concise, however, I have a feeling that my writing will reflect the turbulence in my life at the moment.
I stopped writing this blog almost 9 months ago, partly because of A levels (and laziness), but also because I assumed that my final year of treatment would be one spent going through the motions and therefore finding things to write about became less natural. However, two days after my final A level exam ended in June, suspicions that had been growing for a couple of weeks were confirmed and I was informed that my Leukaemia had returned and that I had relapsed. I greeted the news with what looking back was genuine acceptance and calm, while not being a negative person, I had always known that relapse was a possibility and so had prepared myself over months, if not years, for my second dose of life changing news.
Details of the following months are blurred and I struggle to recall dates as days blurred into one after another. I was to have two cycles of very aggressive Chemotherapy called FLAG-IDA, over two months, before a bone marrow transplant in early September. Unfortunately, as is so often the case things didn't go necessarily to plan. The Chemotherapy wipes out the immune system in it's entirety and therefore I was incredibly susceptible to infection. Although the Chemo was only administered over one week and I was therefore allowed home for the remainder of the month, twice in the first cycle I was readmitted to hospital at 3:00am with temperatures that at one point exceeded 40 degrees due to infection, only to receive 3 weeks of anti-biotics before being released again. Therefore the time at home that is so needed to recuperate strength was replaced by lying in a hospital bed in the Bristol Teenage Cancer Trust Ward with visits from friends and family my primary reminder of the outside world.
My second cycle of chemotherapy resulted in significantly worse consequences than just an infection or two. My immune system completely crashed and as such a retinal hemorrhage occured in my left eye rendering me unable to focus on the near or far. After special consultancy with optical doctors, it was decided best to leave the treatment of the hemorrhage until post-transplant so as not to risk infection of the eye and more serious consequences.
However, still the good news kept rolling in!
After managing to leave the hospital in the middle of August to acquire my A level results (and find out that I obtained a place at my first choice University, LSE) I was readmitted once more to the Haemotology Centre that night with another infection. Shortly afterwards a truly unbearable pain began to occur in my lower bowels, turns out, it's not a funny place to get an infection at all. After many, many scans I learned that I would need surgery before going ahead with the transplant, this created all sorts of risks with regards to the bone marrow transplant, but it was decided that it was the best course of action. Luckily, the surgery was very successful but it did delay the transplant by nearly 3 weeks meaning I didn't leave the hospital for a single day, unable to walk or eat properly for 4.5 weeks. 4.5 weeks in the same room, driving me slightly more insane amidst horrendous pain and the waves upon waves of doctors and nurses.
After all of this however, it seems to have been all worth it, I've reached what's known as a "deep remission" which means that the number of Leukaemia cells in my blood has reduced significantly in comparison to before my two cycles of Chemotherapy which is obviously great news, even if the journey getting there nearly broke me.
So this is where I am right now, writing this, on the very precipice of the most terrifying thing of my life.
The bone marrow transplant will start on the 24th of September and will involve both aggressive Chemotherapy and high intensity Radiotherapy before the stem cell infusion on the 2nd of October. All manner of things could, might and will happen to my body in the resulting weeks and it would do neither me nor the reader of this post any good to speculate on the potential consequences that could occur from treatment, trust me on this. After losing nearly 16 kgs in 2 months it's almost certain that I'll need to be fed through a tube through my nose for a while, as the rest of my body needs to be at it's strongest when my immune system is at it's lowest. Oh and I'll be in isolation for a few weeks as well which will mean that while I can have visitors, I can't leave my room for quite probably weeks on end.
So I've outlined what has happened and what will happen, but I haven't really mentioned how I've been trying to make sense of everything that has occured in my head. The sheer number of statistics I've learnt which reflect outcomes of various treatments hurts to think about! However, one which I can't get rid of is that my transplant has effectively 35%-40% success rate based on the number of infections I've had and other factors. "Success" means that the Leukaemia goes away forever, I don't want to really know what failure entails just yet.
I'm terrified, words can't truly convey this debilitating fear. Fear of the physical pain that the consequences of treatment will bring is one thing but by far and away it's the mental struggle that is worse. I'm scared that I'm at my happiest only when looking into the past, I don't live in the present anymore, I hate the present, I certainly can't see a real future ahead and what's the point in thinking about one which may or may not exist. I'm afraid of being alone, I always have been, I'm needy like that and worst of all, I'm afraid that after Thursday there is a significant possibility that I may never leave the hospital ever again. I guess we shall see what happens x
Hi Will,
ReplyDeleteI reached your blog after our mutual friend Rachel posted a link to it on Facebook.
When I was 13 my mother (49 then) was diagnosed with leukaemia. Much like you she had chemo, went into remission and had a little normality back, then relapsed and things started to look a little bleak. She was very fortunate at age 51 - one year after the usual cut-off age - to receive a bone marrow transplant. It's not a happily ever after story as she did catch a bug which took her down a few months later, but she did make it through the BMT and beyond, and as her family we were grateful for the extra time we had.
I doubt I could say anything to cheer you up, and I cannot say I know how you feel as I have never been hospitalised, but I wanted to try to offer you a little reassurance. I am guessing you are going to the BMT unit at the top of Bristol Children's. If so you are in luck as it is a great hospital and the staff in that unit are amazing. They really do their best to make things better and easier for both you and your family. The BMT process from what I can remember is quite gruelling but you have made it so far with the chemo you have already had. It is not fair that life has thrown you so many extra hurdles to jump over but it sounds like you've been doing so well so far. I believe that one of the most important things in overcoming cancer and its various knock-on effects is your will and determination to keep going. They are both hard to maintain especially with increasing setbacks but with that said, I wanted to send my very best wishes to you. Being a stranger perhaps it won't mean as much to you, but it doesn't hurt to have one more cheerleader hoping for the best for you.
And while there is nothing to make you long for the outdoors like being stuck in a hospital room, perhaps you might get to indulge in some indoor rainy day pursuits. There are a lot of great TV shows worth binging on; for completed series I would recommend Friends, Gilmore Girls, The Office (US version) and Fringe. If your eyesight or other factors rule that out, I highly recommend all of the current output from BBC Radio Comedy on Radio 4 and 4 Extra but also I recommend the original radio series of The Hitch Hiker's Guide to the Galaxy. It is the most engrossing audio, cannot recommend it enough, and that's available on CD so you wouldn't need an internet connection. The first two series recorded in the 70s are the best but the other three do follow the same style if you want to hear more.
So to conclude, all my best wishes to you for your next step, and also a huge congratulations on getting into LSE. Even though you can't take that path right now, that doesn't lessen how much of an amazing achievement it was for you to receive the offer.