Sunday 15 May 2016

This Isn't Flying, This Is Falling With Style

In December of last year I recounted my transplant experience from September onwards and although at the time I was reassured that I'd come through the worst of what was to be expected, I was still very uncertain about my health and the immediate problems I would be facing returning to normal life.

The last 5 months have flashed by and luckily, with only a few minor complications to complain about, the Epstein-Barr Virus and Shingles being the most note-worthy. I have been steadily rebuilding my rebooted immune system and in the process I have become stronger and undertaken greater challenges. I came out of hospital after my transplant severely underweight and now through taking care of what I put in my body and regular exercise I feel like I am returning to the person that I was before the relapse.

I was waiting for something significant to occur before admitting to myself that I was heading in a positive direction. I made a few trips to visit friends at University in Plymouth and Durham, but my week with Shingles mentally knocked me back a few steps as I had to spend a week on anti-viral and anti-biotic drugs in hospital. However, during that time an opportunity presented itself to me that I was very interested in. The Teenage Cancer Trust was enquiring as to whether any former patients in the South West would raise money for the charity via the form of a sponsored Skydive and luckily for me, the airfield was only 40 minutes from where I lived. I put my name forward with expectations that it remained highly unlikely that after only 2 weeks of being finished with the last of my immunosuppressive drugs, I would be allowed to make the 10,000 foot jump. To my amazement, my Consultant deemed me able-bodied enough to take part, although he did remind me that in his years working as a Doctor it was unprecedented for someone only 6 months post-Bone Marrow Transplant to want to attempt anything like this.

Undeterred, today at around 1pm I found myself almost 2 miles above the ground with not a single butterfly in my stomach as the door to the plane was pulled open and I sat with my legs dangling over the side of the aircraft. 11 months ago I was lying in my hospital bed losing weight daily, beginning my cycles of intense chemotherapy and today I was fulfilling a dream I'd had for a very long time with the liberating realisation that very very little can scare me anymore. Although I wasn't nervous, the adrenaline was definitely pumping and I will never forget tumbling out towards the ground in free fall and looking up at the plane flying back into the clouds, it was a rush that I've experienced very few times in my life but I hope not for the last time!

I'm hugely grateful to every single person who made today possible for me, from my ever supportive family to the doctors and nurses who've rebuilt me. I'm especially appreciative to all those who donated to my Just Giving Page and if anyone feels so inclined to donate who hasn't already, then I've left the link at the bottom of this post.

Not so long ago I didn't think that it would be possible to feel the way I do right now. I'm pleased to say that for me cancer hasn't been the end of a normal life as I genuinely thought for a very long time was the case. It's been a long and seemingly impossible process and I'm sure that I'll have many more challenges to come in my future, but I'm now definitely on the up metaphorically and maybe literally as well, because worryingly for my parents, I think I've found a new hobby!

Thursday 31 December 2015


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.

Sunday 20 September 2015

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

Sunday 14 December 2014

Local Anaesthetic

It's been a crazy few weeks for me since my last post on here! I feel like every time I have a little break from writing I always end up saying that, but I guess my life is just a bit all over the place at the moment.

After Find Your Sense of Tumour I focused almost all of my attention onto two things, my performance of Romeo and Juliet at Stratford on the 7th of December and my Cambridge Interview on the 12th. However, before both of these important dates I was scheduled to have a Lumbar Puncture on Tuesday the 2nd and it was going to be the first time my procedure was administered while under Local, rather than General, Anaesthetic. In the past the idea of being awake while doctors insert a needle into my spine had hardly appealed and yet I felt I was ready to give it a go as it saves time spent in hospital and I wouldn't have the groggy hangover that General Anaesthetic normally gives me. Tuesday came and went and although I was apprehensive, I felt calm and quite pleased with how the procedure had gone and soon I was back at home. However, I did have an ache in my back which didn't go away but I was sure that this was a side effect of the change in Anaesthetic.

The pain in my back didn't subside and yet I found that after some rest I began to feel better, the next few days though gave me real cause for concern. I began to get searing headaches and the discomfort in my back would flare up an hour or so after I had woken up and would leave me unable to move my legs and lower back from the pain. However, I was still forcing myself to go into school even though I would inevitably end up vomiting through lessons when on reflection, I should have just stayed at home and rested, something that doesn't come entirely naturally to me. By Thursday I was struggling to concentrate for more than fifteen minutes and at parents evening I was told by my teachers that the amount of times I'd left their classes in the past week was concerning. However, I was adamant that I would be fighting fit for my performance at Stratford and so on the 6th I naively went to stay overnight for the production the following day.

Well, I didn't make it to one o'clock on that Saturday. Curled up in the faetal position I called my hospital and asked if my symptoms were normal after a procedure under Local Anaesthetic. I was told that this was definitely not the case and I should see a doctor, either in Stratford or back at Gloucester immediately. I felt it better that I return to the hospital where I receive the vast majority of my treatment and so returned to Gloucester as soon as was possible. I spent over 9 hours in the hospital and after being rigorously tested for infections in my blood, I was eventually allowed to leave (admittedly after much persuasion) on the condition that I was to try and get as much rest as possible in the following days. It being the weekend, my normal consultant was unable to contact me so on on the Tuesday afterwards (having sadly missed my performance) I again called the hospital to ascertain the reason for my debilitation.

As it turned out, my back pain and headaches were nothing to do with the type of Anaesthetic I was subject to. Instead, it is thought that during the minor op. too much Cerebrospinal fluid had leaked out of my back creating little air pockets which put pressure on my spine and brain, hence the headaches and backaches. This was caused by over eagerness to leave the hospital when I should have remained horizontal for an hour after the procedure. In conclusion, I have no one to blame but myself!!

Well sadly, the effects of this spinal leakage didn't clear up until the Wednesday before my interview which affected my preparation somewhat before I made the trip up. However, the events that transpired leading up to my interview arguably did help me. After being told on the 6th that potentially I could have a blood clot in my spine or brain, it did give me a little bit of perspective heading into the daunting Cambridge environment of what was really important. What happened because of this is that I really enjoyed my interviews and I felt that I managed to give a good representation of who I am as a person and spoke for the majority of the time about what I am really interested in, which is all I really wanted to do.

Now that Cambridge is out of the way and I'm over the disappointment of not performing at Stratford with the awesome Cotswold Players, I'll be focusing on knuckling down at school and (arguably more importantly) making the most of my friends coming back from University this week and spending time with them over the Christmas period! Speaking of which, I need to get my head together in regards to buying some Christmas presents... Urm, I mean, I will be cracking on with catching up on all the work I missed at school the last two weeks if you're reading this teachers/parents

Saturday 22 November 2014

Find Your Sense of Tumour - Second Time Around

Appropriately it would seem, my 50th blog post will be about an incredible experience I recently had that even after almost 2 and a half years of treatment, changed my perception towards dealing with cancer once more.

Last weekend I was privileged enough to not only be allowed back to Find Your Sense of Tumour (the annual Teenage Cancer Trust conference for hundreds of young people who convene at Nottingham Centre Parcs) but I was also given the opportunity to speak on the Sunday afternoon to the rest of the invitees. I was asked to outline the benefits and indeed problems that can be associated with blogging due to the Teenage Cancer Trust having read some of my previous posts on this page. I know it might sound a little corny but after the profound effect that last years FYSOT had on my approach to treatment, I was truly honoured to be asked to say a few words.

However, the weekend was vastly different to the experience that I had last year. For one thing, this year, everyone who attended was between the ages of 18 and 25 which for me was brilliant! Being one of the youngest I spoke to many people who had already finished treatment and had started experiencing life beyond cancer, giving me an encouraging boost for my final year (and one month and 2 days) of treatment. However, the weekend was by no means just a holiday break, an escape from the monotony of school work, as I found that at times I was overwhelmed by the somewhat strange atmosphere. It stands to reason that if you're surrounded by hundreds of people who share the commonality of having a disease, then that's what is going to be primarily discussed. I went from my home environment where I try and put my Leukaemia to the back of my mind, treating myself like a "normal" person, to a place where I was surrounded by the very thing I try every day to forget. I know lots and lots of people deal with having cancer differently and for many, surrounding themselves with other people who share their experiences really motivates them, but sadly this isn't the case for me. I had forgotten the intensity of emotions at FYSOT and I did find it a little distressing watching some people break down at the inspirational talks and others sit their smiling and laughing. It messed with my head a little bit to be honest! This however, did not detract one tiny bit from the absolutely amazing people I met. After shutting myself away from other people with cancer (partly due to not being on a Teenage Cancer Trust Ward for the majority of my treatment as the Royal Gloucester Hospital does not have one) I found it exhilarating to meet teenagers with the most incredible stories of diagnosis, treatments etc. that I'd never have been able to imagine.

I was thrown in with the Bristol and South West group and was fairly nervous about being the little country boy from the Cotswolds with one of the most common (and in my mind, least "interesting") cancers. Yet every single one of the people I met had a maturity and understanding beyond any of their years (sounds patronising but damn is it true). The amount of times I heard from so many young people over the weekend "I don't believe my type of cancer makes me worthy of being here" or "I didn't have to have any chemotherapy so I'm not sure how I fit in" was ridiculous. However, each of these statements was met with the same compassion and realisation that every cancer experience is different and that makes them incomparable to each other. Therefore everyone was welcomed and was made to feel like they could share and be a part of something so much bigger than individuals.

For me, the Teenage Cancer Trust's weekend not only provided a bit of positive respite from having to pretend everyday that I'm always okay, but it also allowed me to make some really brilliant new friends who know how rubbish cancer can be and I feel I can relate to.

Find Your Sense of Tumour brings together people from all across the country and yet no matter where they are from, the one thing that they all have in common isn't just cancer, it's a deep understanding and camaraderie that comes naturally to teenagers who are all in the same boat but are all striving to make the best of a really rough situation.

Sunday 9 November 2014

Dr. Dilys - Going Beyond The Expected

Last time I wrote on here, I thanked the doctors and staff at Gloucester Royal Hospital for coming to support me at my play. However, today I want to be really specific in who deserves the biggest thanks of all.

Dr. Dilys O'Neale is without doubt one of the biggest personalities I've come across as a consequence of my diagnosis. She was there on day one on the 10th of October 2012 and on the 31st of October 2014, she retired from her position at Gloucester Royal and without doubt will be incredibly missed. She influenced me hugely in my approach to treatment, always greeting me with a sly dig and a smile. Dilys understood that it was truly rubbish for me to be in hospital, feeling awful due to chemotherapy and so she would make light of it, which for me, was the perfect response I needed to my complaining. She'd always buy strange plasters and give me stickers after treatment and we'd often laugh at the latest Russell Howard's Good News while she pushed the bleak yellow fluid into the back of my hand, but also, to the back of my mind.

Dilys honestly made hospital a better place to be and therefore, made my life a whole lot better in the process. She'd always (admittedly sometimes a few weeks late) produce reams of charts and graphs to placate my worrying mum and I was always happy with my Disney Princess plasters. I feel like I'm maybe not saying "thank you" as seriously as I should, but I feel like that was exactly what Dilys was like as a person so I don't feel too guilty.

However, Dilys, if you are reading this, then please know that you've had a lasting impact on mine, as well as my family's life, we owe you big time, so thank you! I don't want to say it's all been a barrel of laughs because, well, you know, cancer played a pretty major part in our meeting, but through circumstances neither of us could help, you helped make a bearable situation out of a pretty bad one.

Good luck in everything you choose to do next - Whiny Will x

I realise that I have been very lucky to have had such a friendly face around me for two years at hospital, it must be a really tough job to look after grumpy little b*st*rds like me. I think that it can be easy to forget just how much work all the doctors and nurses do for all patients and so it's always good to remind them how appreciated they are.

Sunday 26 October 2014

Thanks All Round

My performances of "Romeo and Juliet" as "Tybalt" concluded last night and looking back, the entire experience was amazing. I signed up with the Cotswold Players on a whim that it might be fun to do a little bit of acting, to meet some new people after my friends went off to University. I'm a pretty confident person when it comes to talking in front of large audiences anyway, through my public speaking, so I didn't think amateur dramatics could be too scary. Well, I've had an absolute blast. I've been lucky enough to make some really good new friends and while initially I felt out of my depth, every single member of the cast made me feel welcome and helped me improve my rather apt character, who was in essence, a grumpy teenager.

I now have so many fantastic memories and experiences that I can happily look back upon and which have definitely inspired me to join a theatre group at University next September! I know it sounds cliché, but I went out on a limb and put myself outside of my comfort zone, trying something I've never done before just to see what would happen and as you can probably tell, I feel like it has really payed off. Being part of the play over the last couple of weeks, has also been a real help in distracting me from worrying about University offers. Already people are beginning to receive placements and so by taking my attention away from that, I haven't caught my breath long enough to even think about it properly, after seven performances in just over a week and a half. At the moment I'm still on a bit of a high from our last night, but I know sooner or later I'll begin fretting, therefore I've already got a few events lined up to keep me busy. I should be giving a talk on why it is so important to donate blood in the next week or so at my school and also, in mid-November, I'll be speaking at the Find Your Sense of Tumour conference about this very blog and how it has helped me to deal with cancer by reaching out to other people in similar situations to me.

Anyway, with all that to come I'm feeling pretty optimistic about the upcoming couple of months and then, God forbid, it's Christmas...I've already seen Mince Pies going in Morrisons!

One final thank you must go out to all my doctors, nurses and everyone at Gloucester hospital who came to support me at the play and also, put up with my chopping and changing of treatment to fit around my performances, you're all absolutely brilliant and I'll see you on Monday for my steroids!!