My Cancer Diary (10/04/09)
by Lee Wyatt on Friday, April 10, 2009 at 4:54pm
I wrote this to go on the Macmillan forum to help people know what it feels like to go through bowel cancer after my nurse suggested I should write a diary, so I thought I might as well share it here. So here's my story so far...
My initial reaction was "OK, what do we need to do to get rid of it?" I cried for my girlfriend and family but not for myself at the time. The initial shock only lasted a few hours. I was adamant I wanted to make the most of the time before I went into hospital and I knew staying positive was important. In fact, that night I saw one of the best shows I had ever seen and slept well.
I had known I was ill for 6 months, but looking back I was not well for much longer. First constipation, then acute pains at the bottom of my ribs. Sometimes I was doubled over in pain.
The first doctor I saw sent me home, like I'd wasted her time. The next one told me I had strained stomach muscles. The fifth doctor I saw sent me to a specialist and for scans. In that period I had become severely anaemic and I was not far from having a blood transfusion. Iron tablets only masked the real problem. I carried on playing football weekly, but just before I started the iron tablets I could feel I was running on an empty tank before I'd even started to run. That's when I knew I was seriously ill.
I underwent surgery on the 12th Jan 2009. Those 20 days in between the diagnosis and being admitted felt more like 200. A thousand questions run through your head, but no one has all the answers. The best doctors in the world don't have the answers you want. But gradually I learnt to accept that some things are beyond our control and you have to be patient. You have to be well informed and trust the doctors and nurses making decisions that could save your life, or not.
Many things aren't out of your control though, and I consider myself one of the lucky ones to have a family so caring and some of the best cancer doctors around in my local area.
A bowel specialist at Stepping Hill Hospital in Manchester oversaw my operation. I awoke without my large bowel, as planned, but also without my spleen and part of my pancreas. Another surgeon had to be called and the operation took longer than expected. The cancer had spread quite aggressively since my last scan. The pain relief from an epidural wasn't enough, so I relented and asked for some morphine. I spent two nights in intensive care, half awake and half sleeping.
The days following the surgery were frustrating, I wasn't even able to sit myself up. I was totally reliant on the nurses and family for a good week before I could walk. During surgery they had shoved a tube down my member and inflated a balloon inside me, AKA a catheta. But no one bothered to tell me! Once I'd come round from the aesthetic I asked if I could pee somehow because I was desperate. The nurse agreed, so I plucked up the courage to pee the bed, thinking it would get cleaned up somehow and I shouldn't be too ashamed as I could barely talk, let alone walk. So I went. Some hours later I lifted my sheets to see what damage the surgeons had done, I was amazed to see a huge tube shooting straight out of my manhood. "It could be worse," I thought.
I got to sleep that night easily enough, aided my copious amounts of morphine (which is brillaint by the way). But in the early hours of the morning a nurse was doing her rounds and attempting to empty my catheta bag, which was on the end of the tube. Well, she dropped it. I shot bolt up right and made a noise closely assimilating a lama. I thought someone had pulled my todger clean off!
I looked under the sheets, and was more pleased to see it still there than when I was told the surgery had gone well. Looking back I wished somebody else was there to appreciate just how hilarious it must of been. The nurse failed to see the funny side, and must have apologised about ten times. I accepted her apology but didn't take too kindly to her refusal to rub it better.
Roughly five days after the surgery, I tried to eat soup but my body wasn't ready for it. After days of feeling full even though I had barely eaten, I was sick, a lot. It was a relief in a way. I think a lot of it was remnants from the surgery and some of it gunk that my body didn't want inside me any longer.
Family and friends spent hour after hour with me; some times talking, some times cheering me up, some times propping me up, some times just being there.
I was content but frustrated in hospital. Everything was an effort, things we take for granted usually; being able to eat, going to the toilet, reaching under the bed for your slippers, getting to sleep. That said, the nurses of ward B3 at Stepping Hill were incredible. They work horrible hours, but they're always there when you need them.
A few days after the operation I got pneumonia (tons of guitar on my lungs) but that passed in a few days. Just after I'd got over the pneumonia I nearly fainted and my breathing become extremely laboured. I was given oxygen and sent for a scan to see what was going on. They could see a large collection of blood where my spleen had been and suspected it was infected. I was kept in hospital and given antibiotics for a week. It didn't clear the blood so they inserted a drain in between my ribs to draw the blood out. "It shouldn't hurt too much and it will be out in a couple of days," they said.
It turned out to be pretty painful and a really strange sensation, knowing something was in between your ribs. Initially not much came out of the drain, but after a fiddle and yank blood starting come out. It didn't stop coming out for weeks. But it was all for the good I was told. To say having a drain in your side and a bag attached to your ribs is an inconvenience is quite an understatement, but it was necessary.
Two weeks after the surgery, scans showed that I had tumours in my liver that didn't show in the initial scans. Later, I noticed a lump in my neck that turned out to be a tumour as well. They wouldn't do anything at this stage, just hope the chemotherapy would clear it. If not, then another operation. This blow wasn't as heavy. At that point I'd already found enough strength to deal with it rationally.
I stayed positive but after three weeks of a sweaty, hot, hard, noisy mattress I was ready for home. I was expected to stay in hospital for at most ten days.
I was happy to get home but adjusting to things wasn't easy. I'd lost two stone and almost all my muscle. Standing long enough for a shower without fainting was an achievement. I found my relationship with food extremely difficult at first. It was one of my great loves in life and now I could only eat a fifth of what I would normally eat at a time, sometimes less.
At home I still struggled to get to sleep at night, as I had in hospital. I was somehow immune to sleeping tablets. So many things run through your mind, whether you want them to or not, and make it difficult to shut down. In part I was anxious for the chemotherapy to start but I understood I had build myself up first, ready for the onslaught.
As the weeks went on I got stronger and stronger. At first I'd take small walks and then I was well enough to cycle on an exercise bike. But once I got my wits about me again, that's when I really started to deal with having cancer mentally.
In hospital you're mind is occupied by the pain and unfamiliarity; by the drips pumping things in you, by the drains drawing things out of you, by the constant needles being stuck in you. There's always something going on and I met some characters in hospital. One guy thought he was Doctor Who, another thought he was at a wedding reception. When you don't get a minute to yourself, how are you supposed to come to terms with having cancer?
Finally accepting cancer came after a few weeks of serious frustration and endless questions once I had come out of hospital. I learnt patience. I learnt there are so many questions that will go unanswered it's best not to think of them too much. I learnt to not look too far ahead and take each day at a time. I learnt that it's a given that bad things are bound to happen in our lives and we have to deal with them the best we can. I learnt it's OK to fail, what's important is that you're not afraid of failing and you do your best in trying.
After I'd mentioned Lance Armstrong, a cyclist who went on to win 7 consecutive Tour de Frances, one of the greatest sporting achievements ever, after having cancer, my Grandparents bought me two books he has written. They helped me immensely. He is an inspiration to everyone and anybody who is told they have a chance of surviving cancer should read his books. Not only did he achieve one of the greatest ever sporting feats, he explains things eloquently that helped me conceptualise my own problems and feelings. I was able to relate to what he said and it felt good to know that somebody else had similar feelings to myself. His cancer charity - The Lance Armstrong Foundation - found at laf.org has raised over $23,000,000 so far.
I also learnt faith; faith in my family and friends, faith in my doctors, faith in medicine, and faith that I was going to be healthy again. I had grown as a person. I could tolerate more pain, I could tolerate more anguish, more suffering. To do that you find strength and courage that you never knew was there. But once that pain goes away you're left with the same strength and courage that you had to find in the first place. It take the place of the pain.
I could feel I was a stronger person, and on realising this I admitted to some family members that I would rather go through cancer and become a better person than not. It seems a strange thing to say, especially as everyone had suffered so much, not just myself, and I grappled with it in my head for a while. But then I read that Lance Armstrong, the cyclist, would rather survive cancer than win a Tour de France because of the good it had done to him. To me, a least, it made sense.
Despite that, I've lost almost all spontaneity, if only for a little while; I can't just go out and get drunk, I can't 'book it, pack it n f**k off,' I can't snowboard, I can't even go for a round of golf. My stomach muscles still hurt sometimes, three months after surgery. I used to play football and tennis as much as I could. I won't for a while, but there's still plenty of time for that and I try and make the most of the things I can do. I've temporarily lost a lot (including a bit of hair which I'm told will return), but I've gained things that will hopefully stay with me for life; I've discovered the joy of reading (for non-educational purposes), I've become closer to family members and friends and I've gained patience that some will say I lacked occasionally.
I've been through three of twelve chemotherapy cycles, which will take six months in all. They aren't easy. You're pumped with toxic chemicals for three days every fortnight until your body is close to breaking point. It wears you down, at first physically, then mentally. I've got used to the pattern now. For a couple of days after the treatment I sleep longer, I can't concentrate on anything, I get restless and agitated, and I can feel tissues wasting away. Then you feel drained mentally for a few days, almost a depression as your body is so run down and so busy repairing other parts. But I always recover, almost overnight. I still get the odd twinge, wake up a lot for no particular reason, and it hurts to pee sometimes, but I feel alive again, thankful for being here.
When you come close to dying, you appreciate everything you took for granted. You learn to appreciate things you had never appreciated before. Your outlook on the important things in life change, fears and hang-ups disappear.
This is my second chance and I want to make the most of it. "Carpe Diem", seize the day, was my school motto. And everyday I"m able to, I will try to. I now feel more focused and these events have reaffirmed what I want out of life. Amongst other things, I want to inspire people with the music I make and get it heard by as many people as possible. And I want to see the world, and see it quicker. I want to help other people with cancer too (myself, family and friends have raised nearly £1,000 already and are planning more). I'm in a privileged position to know how it feels. I'm one of the lucky ones.