Saturday 29 January 2011

All The Small Things

Cast your mind back to the first post I made when I revealed the extent of my illness. Well, I said I would be giving a brutally honest account of how I'd be coping with my treatment, so I dare not cheat you out of any details. Basically, I had an enema today. And even though it made me feel about 8000000 million times better than before, it was the most horrifying experience of my life. And that's where I'm gonna be leaving that.

Moving on.

Today I've been thinking about routine, and how important it can be for a place like this. These last few days I've really been suffering from feelings of boredom, pain and isolationism, and through that any sense of routine that I was holding on to was haphazardly discarded out of the nearest window. Today I feel like I've turned a corner of sorts, as life simply takes a new twist in hospital as opposed to just being put on hold. Yet the one thing I'm struggling on is what kind of routine to adhere to. TV hours? Xbox sessions? Strenuous exercise routines? I've got to be honest, being confined in a space so small has left me short on ideas as to what to do with my day, so I thought WHY NOT ASK YOU LOVELY PEOPLE? If you've got the capabilities to comment in the box below then do so! I'd love some suggestions. Some facts about me that might help: I like the colour green. Craft work amuses me. Keep it clean, people.

Short and sweet today you might think. I'll be sure to get an update to you early next week, focusing a bit more on how the treatment itself is going. Chemo affects your mood in so many different ways it can be tricky to keep a close tab on the exact extremities that your body goes through. What's important to remember though is that this blog is not only a great way to reach out to others, but to act as a way for me to fully come to terms with my treatment, so I'll be sure to keep you all informed on all the weird and wonderful side effects that I'm going through!

Big love!

Ryan.

Monday 24 January 2011

Headaches and best mates.

Well first thing's first, I thought I'd apologise for the lack of an update for the past few days. I don't mean to keep you in the dark, and I have to say I've been absolutely touched by the interest that you've all invested into my recovery. So to make it up to you, here's a bumper entry about the last four or so days of my life, though I'm terribly sorry to report that they've been on the most part BORING AS HELL.

Perhaps the most significant development was on Thursday with my lovely lumbar puncture, a process which involves taking fluid samples straight out of the spinal chord and then injecting the chemo directly to my brain. Dramatic as hell, you might think, but the process itself wasn't actually that bad, and I joyfully walked out of the procedure thinking all this chemo lark was all a bit of a picnic and that I was practically invincible. Never again in my life am I endorsing any such feelings of underestimation. The after effects of that procedure have been hellish. Imagine the worst headache known to man, coupled with the vision and audio of Bono poorly playing the citar with a choir full of Miley Cyrus/Macy Gray clones bringing up the vocal rear behind him and you're not even close. Spinal fluid imbalance is no joke kids, so be wary indeed.

I thought I'd also point out that if Biggie was still alive and found out one of his raps had been remixed with Miley Cyrus, he'd probably kill the bitch.

But in amongst the gloom and anguish of chronic headaches I've had some good times, I assure you all. Saturday in particular was brilliant, mostly down to the huge number of beautiful visitors that came to see me throughout the day. When dealing with treatment as heavy as this, sometimes the best method is simply forgetting about it all and laughing with friends and family, and that's what Saturday was all about. Being surrounded by people that I care so dearly about actually made me forget about all this Luke nonsense (by the way, I'm now simply calling my condition 'Luke'), and even if it's snippets of nostalgia or bemoaning a typical bad result for West Ham, it's so nice to be reminded that I have a life waiting for me as soon as I get this treatment out of the way. Yesterday I was upset trying to comprehend the amount of time I have to spend in this ward, but I assure you now as I write this blog I have a smile on my face as I look forward to all the time I'm going to have when I'm on the road to recovery. Things aren't so bad.

That's not to say don't visit me for the meantime though. I love visits, hence COME VISIT ME. Even if it's just a quick hello or yearnings for some of my wise counsel, you'll be doing me the world of good by showing your lovely faces.

That'll do for now. Just a quick word to all my fellow English peeps sitting Victorian Lit tomorrow: sorry I can't be there, I'm sure you're all gonna smash it though and get the grades you need. Remember, Robert Browning was an absolute gangster and is well worth writing a question on. Believe.

Much love.

Ryan.

Wednesday 19 January 2011

Acquiring the blood of others has made me desperate to become a vampire.

You know, a badman vampire, like Blade. Or Dracula. Or Gangrel. Not the modern day pussy type. You know who I mean.

What can I say about today!? I got my head shaved, my Chemotherapy started and for reasons unknown my mouth has started to fail at articulating the words that my brain tells it to. I would say something that started meaningful but the sentence would slowly descend into a pitiful combo of slurs and mumbles which would eventually end in a semi awkward silence and a confused outlook on myself. What's the deal there? I'm glad I can still type though because otherwise the escapism I enjoy with this blog would be greatly dimininini blu blu meow blerp...

SEE WHAT I DID?

Shaving my head was a big step. I was always going to do it - in a weird way I saw it as an act of defiance. It's like I'm refusing chemo the satisfaction of taking my hair away, and doing it myself would be the perfect 'bring it on' sentiment. Now I'm not so sure, purely because the vain little princess deep down inside is crying into her pillow and contemplating an 'unkempt bastard' personality switch. In other words, I don't like it. Obviously though there will come a time when I will have no choice but to accept it. The important thing to remember here is that losing your hair is not like losing a part of yourself. No matter what changes my body goes through over the months or even years, I'm still coming through as the same person I've always been. Just a bit wiser. Though that's not close to being a certainty.

Speaking of wise, I feel I should introduce one of the aliases I've created for certain characters of my epic tale. Now as I write more and more entries you will come across various people, such as my absolutely wonderful girlfriend Ellise, my brilliant family members and various friends of mine, and they will of course be referred to according to their real names. Now as for the hospital staff, I've decided to give them rather silly aliases - not for any legal reasons, just because I'm bored of their proper names/don't confidently know them enough to refer to them correctly on here. So, my Consultant? Dr. Greybeard. He is neither grey, nor has he a beard, but I just associate grey beards with being wise and true. He's an excellent Consultant, knows his stuff and I fully trust him with spearheading the logistics behind my recovery. Hence I implore you to have a drink on Greybeard next time you go for a pint.

Other than that there's not much else to report. I've just been to the vending machine and it's only gone and eaten my only pound coin. This has made me more angry than anything else in the world right now and I'd hate for my attitude to reflect on what has been a rather encouraging post. All I know is after I get out I'm leading a student style demolition protest on vending machines cause I'm sure the bastards are more devious at stealing your money than god damn fruit machines.

Peace and joy,
Ryan.

Monday 17 January 2011

Consider our fight begun.

Today has been an eventful one, to say the least. I've learnt a great deal about my treatment and pleasingly there was a lot of good news. For starters the preliminary results of my chromosome test came back and it looks like there's no Philadelphia chromosome to be seen. To explain, with many cases of leukemia this chromosome is present and is an abnormality, leading to complications in treatment which may further lead to a bone marrow transplant (numerous if an exact donor is unable to be found), stem cell treatment and difficulties in fully eradicating the source of the leukemia. So as you can imagine, hearing that I'm lucky enough to not have it has left me in superb spirits. Onwards and upwards from here!

That's not to say everything's going to be plain sailing. Tomorrow morning is a busy one indeed, and at about 9.30am I'll be having my Hickman line put in. Hickman lines are wonderful little creations. Acting as a tap of sorts to your bloodstream, it enables transfusions and blood tests to happen without the psychological trauma of needles and syringes. I've become quite tired of having more holes in me than a Tetleys teabag, and in a ward such as the Haematology ward, it truly is the ultimate fashion accessory. Once 'installed' in the upper right corner of the chest, it can stay as part of the body for up to a year, meaning that a difficult treatment period can be made much more simple. Quite the gadget, you would agree.

There are difficulties though. Namely the procedure involved. Any time the nurses have said the words 'local anesthesia' in the same sentence I can't help but bust out the cynicism card. Last use of local anesthetic? Bone marrow biopsy. Feelings of anguish and despair? Through the bloody roof. So naturally undergoing a procedure that literally involves crafting a bit of plastic to your skin and tissue, no matter how undeniably cool that bit of plastic is, is a bit terrifying. Call me a wimp if you will, but even Robocop would think twice about this one.

Moving on, I'm also undergoing a lumbar puncture tomorrow, a perhaps equally painful and disturbing procedure which involves injecting needles into my spine. This is significant though as it officially marks the beginning of the first phase of my chemotherapy. This is it, the real deal. Considering how much waiting the last few days have consisted of, everything feels a bit surreal. On the one hand I feel like a small child at Christmas, eager to bomb it down the stairs in the morning to unwrap his presents and eat all the Quality Streets. But then the fear of it all is hard to shake off, no matter how determined you are to get on with things. Some sleep will clarify my thoughts I hope, but tomorrow will certainly be another momentous day of my life.

It's time for bed now. I've got 300ml of blood being pumped into me as we speak and the sensation is just as bizarre as it always is, but I seem to get tired from blood transfusions and drift off quite easily. If you're looking for a hair update, it's still sitting comfortably atop my crown, which is nice because having hair is generally a great thing and it feels soft. Unfortunately though I'll be needing to get a move on with liberating it should I want to avoid the distress of seeing clumps of my own hair on the floor of the shower room. I'll keep you all posted.

Love you all.
Ryan

Sunday 16 January 2011

I'm going to get straight to the point on this one. On Thursday the 13th of January, just three days ago, I was diagnosed with ALL, which stands for Acute Lymphoblastic Leukemia. I have cancer of the blood. And as you can imagine, it's turned my entire life upside down.

Just typing those words is a massive weight off my chest. Sure, I've been talking about my illness for three or four days now and it's enabled me to come to terms with it. Still, considering that only a handful of people actually know of these 'recent developments' as of now, it's been hugely difficult to come up with a way of making people on a wider scale aware. I would hate for people to find out over some ridiculous facebook status twitter malarky so I figured that this was the best way of doing things. Telling people is one of the hardest parts, but if I'm going to beat this illness then I must face up to the responsibilities that come with it. And I'm totally gonna win.

So, remembering only yesterday that I actually had a blog and was utilising it as much as Sarah Palin utilises a sense of shame, I thought it was as good a time as any to give it another go, except this time give it some more purpose. I'm hoping to post daily updates on my treatment and recovery, as well as giving you a bit of insight into how one copes with something so astronomical such as this. You'll also get a first hand experience of a few of the quirky ins and outs of time spent in a hospital ward (and trust me, there are lots). There will be bad days, but plenty of good ones too and I hope to not only write with a sense of humour, but also present to you a truly honest account of my life on the road to recovery.

I'll leave it there for now, best this be brief. If you want to ask me anything about anything then absolutely don't hesitate. I'll let you know how tomorrow goes. It might involve me shaving all my hair off OH MY CHRIST.

Thanks for reading, love you all.
Ryan.