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!!

Sunday, 12 October 2014

Weight off my Shoulders

The last couple of weeks have been fairly productive! I'm really pleased that I've maintained going to the gym regularly which initially I doubted that I'd be able to stick to. In the last three weeks, thanks as well to a more sensible diet, I've lost a stone and am already feeling healthier for it so I've just got to keep the commitment up now! Also (and arguably more importantly), on Friday I finally sent off my UCAS application, a big relief to get that done now, but also, huge thanks must go to all my teachers for helping me with my Extenuating Circumstances Form which I'd recommend anyone with cancer who is applying to University to fill in. It's purpose is to inform Universities about any potential problems that may inhibit someone from achieving the grades that they are predicted and so some faculties take this into consideration when giving offers.

Anyway, once again I apologise for the very "University focused" post, the process of applying has sort of taken over my life in the last few weeks but hopefully now I can get back on track with normal school work...joy.

Monday, 29 September 2014

Visiting Oxford

Last week was quite a strange one for me. While I managed to finish off my personal statement and fill in the vast majority of my UCAS application, my steroids meant that I was on edge, fidgety and prone to losing my temper a lot quicker than usual. However, I channeled most of that aggression into going to the gym and exercising, which helped more than I thought it would as I was too exhausted to argue with anyone!

On Friday evening, I drove about an hour and a half to Oxford with a friend to visit one of our mates who'd just moved into the Brookes University. He'd been there for about two weeks and seemed pretty settled in his new surroundings. The trip, which was really good fun, has made me look forward to University even more than before! At the moment, it's all I can really focus on and so I'm working my absolute hardest to give me the best possible chance of getting into the places I want to go. All my friends last year said that talking about University takes over your life and you find yourself not really thinking about too much else and I now know exactly what they mean, sometimes I have to stop myself from rambling on about a "new course I've found" or "types of accommodation" to my poor family, who are quite probably getting sick and tired of it all by now!

Anyway, I've got to keep remembering to put everything into some sort of perspective as there are other things that I need to focus on too, for instance, being nice to people when I'm on my steroids!