Progress

My last post was written in September, just a few days before I was to have my bone marrow transplant and at the time I was very scared of what was to come, but now feels like the right time to write an update on how everything panned out.

The transplant process began on September the 24th and as expected the chemotherapy caused the usual side effects of vomiting and lack of appetite. This was then followed by high intensity total body irradiation for five days. I'd never experienced radiation before and it wasn't great. The process only lasts for about twenty minutes per session and I had been told that compared to the chemotherapy it was far less unpleasant. However, I experienced a rare effect whereby I could taste when the irradiated beams were aimed at me. This is not uncommon in radiation localised to the throat or mouth but was not something I was forewarned of, as even the Radiographers had not met someone who had encountered this sensation during the full body (and less concentrated) process. The taste was truly bleak, a mixture of pumpkin and metal and it stayed with me for hours afterwards which added further struggle to eating properly.

A major side effect of the radiation is an incredibly sore mouth, one which makes it nigh on impossible to eat. Due to the fact that I had already been eating less leading up to the transplant, it was decided that I would have a Nasogastric tube inserted into my nose and down into my stomach so that I would have access to food at any point and hopefully not lose too much more weight. Again, this was pretty uncomfortable and involved a lot of dry wretching but it didn't take long for the line to be put in. Incidentally I didn't get any symptoms of a sore mouth and vomited up not one, but two of these NG tubes which left one end hanging out of my nose and the other out of my mouth. Joy.

The stem cell infusion itself began on the 2nd of October and at the end of day five of radiotherapy. I was to have twelve bags of my donors bone marrow (which I'm told is a lot) over the course of about five hours. It was an underwhelming five hours in truth, after being hooked up to so many I.V.'s in the two months leading up to it, the donor's marrow could have just been any other blood transfusion in the end. My Mum, Dad and sister stayed with me the whole time which stopped me freaking out, I'd been alone in hospital many many times before, but that night felt of greater importance than any other and I needed my whole family around me. The next day was when all the trouble began...

My poor physical response to the chemotherapy meant that the doctors were deeply concerned that my terrible immune system would mean I would get a life threatening infection. Therefore, it had been decided that if any family members were a match with mine then they would donate their Granulocytes (white blood cells) to me to help fight off infection in the first two weeks of transplant. Happily both my Mum and my sister were matches and both offered to donate. However, it was only weeks afterwards that I discovered that there were some potentially very grim consequences of donating these white blood cells and although I don't want to go into these consequences on here, suffice to say that both Mum and my sister were incredible not to hesitate to donate for me.

Meanwhile, on the second day of my transplant I had awoken feeling very under the weather, understatement of the year. Being in isolation on the bone marrow unit was different to the TYA unit as nurses were checking up on me as regularly as a couple of times an hour. Therefore, it didn't take them long to notice that my already low blood pressure was dropping rather worryingly lower. Optimal blood pressure is about 120/80mm/HG, by the time I was moved almost comatose to Intensive Care my blood pressure was 56/28mm/HG. Although I was barely conscious initially, once in the ICU I had regained full awareness of my surroundings...unfortunately. I already had a Groshong line in my chest to allow for I.V.'s to be pumped into me, but the doctors in ICU needed more access to my blood vessels to give me more treatment. As such, I was completely awake when they cut slits into my neck on both sides with a scalpel and inserted a further five tubes into various blood vessels as well as one into my wrist. At this point my Mum and sister were donating the aforementioned Granulocytes in South Mead Hospital on the other side of Bristol so were being updated by my Dad over the phone until their donating was completed, which left everyone feeling powerless. I was in ICU for four days with a nurse not leaving my side for even a minute! Mum spent almost all the hours of each day with me and undoubtedly they were some of the hardest we had to get through. However, get through them we did. I was effectively strapped to my bed and to complicate matters I didn't even have control of my own bowels, Mum would have to lift me off the bed for me to urinate or defecate and if I'm being honest most of the time I was so weak, slipping in and out of consciousness that I'd more often than not miss the bed-pan anyway. I look back at those days with astonishment, words can't really describe the sheer respect I have for my Mum. She was phenomenal and took everything in her stride as if this was all normal. Everything she did was to make my life just the tiniest bit easier, it's hard to explain to anyone who hasn't experienced that complete debilitation, there was absolutely no shame or embarrassment when she would help me dress or clean me because I was too ill and broken for those things to be a necessity. I now find that seeing these words in writing is quite crushing, being at home recently has meant that these events have faded to what feels quite a distant memory and I've taken for granted how much better life is now.

After having the lines from my neck removed in ICU, I returned back to isolation in the Bone Marrow Unit in the Haemotology Centre. I received the Granulocytes donated by my Mum and sister and infection was warded off. The doctors kept saying that they were looking for a rash on my skin called GVHD which would show them that my donor's marrow had grafted into my bones and on approximately day 11 this rash appeared at Grade 1 level (the lowest). This led me to having to use some mild steroid cream to prevent the spread of said rash and once it had disappeared I was free to leave on day 22. In total I spent about a month in isolation and I wrote a lot of my thoughts down in a book at the time and kept myself busy with YouTube and reading familiar books. My family were allowed to visit me in hospital but because I was so susceptible to infection I wasn't allowed many visitors at all. The one thing that did break me was the food. Hospital food completely wore me down, especially as I was/am on a "clean diet" meaning that all my water is boiled and I can only eat from a very strict list of foods. Boiled water was warm and so in the end I stopped drinking, in the last two weeks of hospital I would get all my nutrition from Weetabix and all my fluids from the left over milk in the bowl. When I left the hospital I weighed a meagre 56kgs in comparison to the 78kgs I weighed when I first arrived and so I've spent the last three months attempting to put on weight.

In the time that followed I was still visiting the hospital at least twice a week and staying in a room provided by the charity CLIC Sargent with my Mum a short walk away. We filled the days with walks and short trips out but had to steer clear of lots of people and busy public places but around day 50 I noticed another rash breaking out on my skin. The doctors diagnosed a very low Grade 1 GVHD again and yet in two days it had covered 86% of my body and developed to Grade 3! This led to lots more tablets being needed as well as various creams having to be applied until it was all under control.

In comparison to the months beforehand, November and December were fairly subdued until I managed to contract an infection from a splinter of all things, on December the 20th just 3 days before my sister's 18th birthday. However, with 14 extra tablets to take a day the infection was brought back under control and I've had the longest break from hospital in 6 months, a whole week and a half off! Gradually the doctors have let me have longer and longer trips back home and as I said earlier this has led me to taking things for granted far more than I'd like. I'm ashamed how quickly I've forgotten how much worse things could be.

The last few months have been fairly nightmarish, often terrifying and at one or two points I've flirted with death. Yet through all this I couldn't have managed without my my friends and even more importantly my family. My transplant still has a 50% success rate and I don't really know how long I'll be taking tablets for, or what infection I'll pick up next, but I know do know one thing, it's so important to take the most pleasure out of life when possible, because it can all change so quickly.

It's Been A While...

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