Just over two weeks ago I was my normal self. I had a bit of bloatedness, but nothing more.
A bit more walking, it’s just some constipation.
I always eat well, I exercise, I cycle lots and it’s the first time I’ve bought constipation relief.
Boy, that worked. I was on the toilet the next day quite a bit, but my stomach kept growing.
I caught myself in the mirror. I looked gaunt, but I’d but weight on. My stomach was massive – pregnant even. Something was very, very wrong.
I went to the doctor, but with the COVID-19 restrictions I was on a phone appointment. I had to fight to be seen. My stomach got larger. With no doctor available I instead got a nurse recommending a blood test and ultrasound in … “a few weeks”.
We’d gone for a day out to Dovedale but I couldn’t walk properly. My stomach got larger. I was getting out of breath. This is only after 5 days of feeling and looking perfectly normal.
I write this not for clicks. I write this not for attention. I need to let you know the reality.
I called through to 111, tried A&E – all on a crazy busy on Saturday night. Eventually got into local walk-in place where I got a referral letter. This got me into Good Hope Hospital. I had an ECG, Blood Test, Ultrasound, Bladder check, X-ray and more done in hours – I swear if I’d not turned up to that MAU (Medical Assessment Unit) then, well, things would’ve been different. The staff there are insanely brilliant, especially a lady called Jane, who was there throughout all of my time in the department.
I was given fluid and sent home, but asked to come back for more fluids as my salts were all out of whack. They couldn’t fully see why. They needed an expert to re-do the ultrasound and possibly do a biopsy to figure out what was in my stomach. Beans it certainly wasn’t.
Next day, bag of fluid number one goes in via an IV-line into my arm.
I’m sitting in a chair as an out-patient. I’m moaning to the wife on the phone (she’s not allowed in, no-one is due to COVID-19) how shit the daytime TV is (Bargain Hunt? You’ve won £10 to share? What’s that all about?) when they pop in and say…
We’re going to do a CT scan
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That gets done. Lovely ride through the big donut-shaped machine. I’m having a laugh and a joke about it being some sort of portal with my son on the phone after. Then, as the second bag of fluid is hung up, a consultant and doctor come in, shut the door and sit right in front of me on chairs.
Leigh, we need to tell you something, your wife needs to be here, we can wait …..
For some reason I say, “What? Tell me now”….
You have cancer. It’s growing extremely aggressively. It’s expanding…
I phase out.
The floor fell out of my world.
Imagine being stood behind a horse while he kicks you full in the face.
There was literally nothing they could do. It was growing rapidly and looked like a stomach cancer of some sort.
We cried for hours. I went into panic. I looked at insurance, selling the house, everything. Black. Black. Dark. Falling. This wasn’t planned.
I’m young. Not yet, not yet – surely not yet?
It’s getting messed in my head now. My memory of that time is a bit muddled, but I’m then admitted into Good Hope. They struggle to get my bloods settled, I have needles, more needles and then a biopsy. There’s tests – so many tests. I lose count of what’s happening and just let them drive. It’s in their hands now. All the information about my case then gets sent to an “MDT” team – a kinda specialist group of consultants from all of the local Hospital Trusts.
I don’t pretend to know enough about this but in my head it’s like the best of the best from each section / discipline of the medical world you need.
Just some (left) of the fluid drained from my system. More than 11 litres was taken from my stomach.
Eventually the biopsy returns and they find that it’s not actually the cancer they thought it was. No, it’s a blood cancer. It’s something called high-grade non-Hodgkin lymphoma. A consultant called Dr Matthew Lumley sweeps out. Fantastic guy. He sends me off to the QE in Birmingham. I don’t know what’s happening but chemotherapy is mentioned. It’s bonkers clever and somehow I’ve got a chance of life again.
My understanding is that I need my body to be told that the lymphoma is a bad thing, not a good thing. It’s all about reprogramming your body I guess but there’s a billion more bits to it.
The view from my initial “hold” room at the QE in Birmingham. I’m not using any Private services.
The QE just blows me away. There’ so many talented people, so many bright minds, so many different types of cancer. My local neighbour Stephen Sutton had one type, but there’s over a hundred types of cancer. It needs constant work. Day in, day out.
The QE is just utterly world-class. When you get some of the blood vials, you can see the care that has been put into them. The decades of work and effort.
My initial view upon waking up at the QE. I was moved to Ward shortly after, which was equally nice.
I’ve never seen or been in a hospital quite like this. Imagine being on a Space Ship passing through the stars. I got transported, woke up and saw the twinkling lights of Birmingham City Centre in the distance.
The first round of my first bit of chemo is underway, and I’m taking a few minutes of lucidity to write this. I’ve been through some immense highs and some earth-shatter lows.
I’ll fess up – this is the most fucking horrible crap in the world. Your decency, your priorities, your inner being is ripped up and shredded around like a toy. I’ve been delirious, scared and all alone in this ship.
Going even lower
Two nights ago I was down. One of the chemo drugs had gone in and I was reacting really weirdly. The other guys in the ward were proper concerned. The cancer inside of me was being removed but as it went into my kidneys it really made me feel wrong. I tried to go to the toilet – nappy on, pipes everywhere, bags dangling off me. I fell, I couldn’t get up. No strength. Nothing left.
One nurse, I don’t know her name, picked me up – scooped me off the floor. It was like a miracle. When I was all cleared up I vaguely remember someone saying “do you want some music on”.
This was what got me through. The headphones went on and this track was on repeat for 10 times or more. It literally pushed me through it..
Value each day you have guys. This came on quick and it came on hard. Very hard. Call those you’ve not called in a while. Hug those you’ve not hugged in a while. Make time.
I’m gonna give it my all. I’m still at the start right now. Sure, if it goes quiet, you’ll know. However, I’m gonna try pushing it the Kaiser Chiefs way….
Knock me down, I’ll get right back up again
I’ll come back stronger than a powered up Pac-Man
F**k you cancer. F**k you hard.
(Constantly updated) – My Spotify Cancer Beating Playlist. This is what I’m listening to during Chemo.
Update – A lot of the “grey areas” mentioned above have been revealed a little now and, at a few points, I was close to being on kidney dialysis several times in both hospitals. The “pain relief” they gave me while I waited for the biopsy results was actually stacks of morphine – I was out, teetering on the edge of failure and they put me on palliative care.
I remember speaking to the consultant saying, “Don’t do anything until you’ve got ALL the biopsy results back.” They were fairly sure it was in my bowels, lungs, everywhere because the CT scan could see that. Thank God I’m still alive.