Total wipeout

Interestingly, there are side effects despite there being no impact upon you during the actual rads treatment. And they're actually, annoyingly, quite tangible (though nothing compared to the nauseated chemo experience, as I keep having to remind myself!)

I slept until 11:30am today. I haven't been able to sleep long for ages - not since I started feeling tired from cancer, not even after chemos. But last night I was so wiped out it was unreal. I could just imagine all of the little cells in my neck and chest frantically dividing and redividing as they dealt with the impact of the the rads.

I wasn't really responsive to my parents talking to me and, unusually for me, I didn't feel like gaming and instead just watched trashy TV until 10, when I went to bed.

I can only imagine the tiredness getting worse! It's okay, though - part of it is definitely the fact that it was my first full(ish) week back at work on top of the rads, which is, in itself, fairly tiring... I guess I used to sleep quite late on Saturdays pre-cancer too (though I was, invariably, quite hungover) so I'd suppose it's a case of plus ça change, plus c'est la même chose...

Other side effects include a feeling of very slight sunburn on my neck and chest and, also, a weird salivary situation. My mouth feels pretty dry (necessitating a lot of ice cream and fruit pastilles ice lollies) the whole time, and, when I'm digesting food, the spit feels kind of thick. Very weird.

But, all in all, it's very manageable. 12 days to go until I'm done treatment.

Zap One

No, it doesn't hurt at all. It's just like having a scan - except you're in a green face mask which is tightly clamped to your cranium.

I basically just took my shirt off (don't all scream at once, girls) and was led into a room which housed this contraption:

Saturn the radio waver

 It's called Saturn (they're all named after planets) and it's the machine that delivered the radio waves to my affected areas. You can see my mask perched on the end of the bed, too.

I was positioned, repositioned, tweaked and moved slightly to the left and right for what felt like ages - all in all, the treatment itself actually took about 5 minutes, but they had to keep moving me around to ensure I was at the right angle to be hit by the beams in the affected areas. As I looked up, this was the amazing view I had:

You can see my topless reflection, ladies

acquiescent aqueous cream

 And yeah, that was it - it felt like having a scan taken, as I've said. I didn't feel anything at the time, and I don't really feel anything right now either.

In any case, the radiographer explained to me that I'd get some soreness on the neck, bit like sunburn, and probably some dryness of the throat and perhaps some minor difficulties swallowing. I've been given the cream on the right to lather and soothe the skin, twice a day.

And yeah, that's it. I walked out, and got on the tube as if I'd just had a normal scan. Perfecto.

Same again tomorrow, for the next 15 days - hopefully it'll be as quick and painless as that next time around!?

T

the one before the radiotherapy

So, I get zapped tomorrow. It's a bit weird to think that I'm on the eve of starting another treatment, on the precipice of one further unknown. I don't know - I hope that it is, as advertised, painless, with minimal side effects compared to the chemo. All I'm doing is thinking that yes, it'll be okay - I've lived through the worst. This has got to be it. I wish I could write more, and more eloquently, but the fact remains that all I want is for all of this to be over now.

I have 3 weeks' worth of radiotherapy coming up now. We have 15 days of it; no weekends, just weekdays. Every day for 10 minutes.
I hear I won't experience anything too bad until the very end of the 'fractions', when I might have a bit of a tiredness, maybe some dryness of the mouth as the zaps are near my salivary glands.

16th June. The last day of my cancer treatment.

I hope so much that this is it. I really, really do.

in the name of science

Soo it happened

yay

I had some beer and some wine. I ate some cheese. We roasted some potatoes and some pork.

And I didn't itch uncontrollably!

No pruritus. Nothing.

I don't have it! Itching all over was the major telltale sign of HL for me!

And it's gone! All gone!

I don't have Hodgkin's anymore! I actually don't think I do!

Of course, I kept drinking in the name of science... 

But it's all gone. I genuinely think it has.

Deep breaths.

A new day dawns.

T

the first non tense thursday

Today is the first Thursday I haven't been tense on since I can remember.

16 weeks ago I was scared and massively apprehensive. I was about to go through chemo treatment for the first time. I had hair. I had muscle. I had cancer.

I could barely sleep the night before - I finally peeled off through exhaustion around 4, having worried myself to oblivion about what would happen to me. I knew I had to do it, I kept telling myself so; but the apprehension of the unknown is a scary thing.

I went through chemo, and felt the sharp pain of the needle, what it was like to be attached to a drip for real, the cold fluidic cytotoxic drugs slowly seeping into my veins; even now, it makes me shudder. I tasted horrendous chemicals at the back of my throat. I felt my veins burn at the arms. I felt what it was like to begin to realise and be overwhelmed by a rampant nausea that turned the pit of my stomach - I threw up everywhere after the taxi ride home. I hadn't felt anywhere near as bad since before. All I could do was lay there and hope to fall into a fitful sleep.

I was scarred by what happened.

And so it was that every 2 weeks, on the Thursday before the Friday chemos, I'd begin to go through the motions. I'd leave work, saying my goodbyes, feeling the pit of my stomach start to churn. I'd make a phonecall to my nan to hear her tell me it's be okay - one more down. But I couldn't ever buy it - the apprehension often felt like a great wave crashing over my once-again-reformed self. And at night I didn't sleep well, knowing what was to come.

And it would be the same. I would have good days, and bad ones. But it was always the same. Less throwing up, though.

I can't believe I did that 8 times. I still can't, if I really think about it. It was so hard, and I found a strength within me I never realised was there. Everything I've been through doesn't feel like anything compared to it. I was so lucky to be in remission so quick. I'm lucky that I don't have much treatment left.

If I could tell myself from that time anything, I wouldn't know. You know why? Because nothing I could have said would have prepared me, or softened the blow. It was a path to be taken alone: with supporters by the wayside, massively appreciated, but alone.

Maybe I would say you'll make it. Time marches on; tempus edax rerum, time; the devourer of all things. I'd get to the end, it'd just be a slog. A big, nihilistic trudge. But you'll get there. There's no rhyme or reason to it - nor, indeed, to anything associated with cancer. But you'll get there.

In sum: I'm looking forward to not going to chemo tomorrow. Instead, I'll enjoy the sunshine.
T

onwards

A bit of a lull in writing recently, I know. But, as the old adage goes, no news is good news.

It's been a fairly uneventful few days; I've just been recovering from the chemo and getting on with things. I feel a lot better than usual, which is the good news; almost definitely because the "threat" of another chemo sesh coming up has been alleviated for good now.

Consequently, I'm looking forward to seeing what happens to me in terms of my recovery after Friday; it'll be the first 2 weeks in what feels like bloody ages (almost 5 months now!) which is not bookended by cytotoxic drugs being pumped through my system.

On that, I went / tried to go for a run on Sunday and it amazed me just how much I've lost my physical fitness now.  I mean, I shouldn't be too surprised, given what my body's had to deal with, but still; I was halfway down the road and my lungs began to feel like I'd been on 30-a-day for the last few months... lovely! I guess I'll build it slowly as time allows.

Other things; went to clinic today - nothing of importance to note except that my final PET scan is on the week commencing 6th September; I'm booked back into clinic on the 16th September to hear the (what she said should be expected to be good) results. I'll try to forget about it now, lest the scanxiety begin.

Not much else planned - I'll write again this time next week once I've had my maiden radiotherapy sesh

Casting call

I went for pre-radiotherapy planning today!

It was very interesting; they basically make a cast of your face out of some mesh plastic, and mark up the places (based on another CT scan) where the radio beams will be aimed.

Here's a pic of me being fitted with the mesh (please ignore the obvious fat / lack of muscle... blame it on the chemo) and what it looked like afterward:

the mask

live long and prosper

Anyway, I had that and a scan. Prepping for the scan involved a cannula for the dye to be injected into me... oh boy. I had to get Dad out very quickly to get some chewing gum to get rid of the taste of the saline (he ran out quick - he'd seem me proj vom enough last Friday!)
Unfortunately, as I told the Doctor but she did it anyway, the veins in my right are as shot as the left... she couldn't advance one of the cannulas, and the one she actually did get in was in my hand.

Ugh. So painful. So bruised. Far too soon - the smell of hospitals makes me feel sick still.
The scan was straighforward, though.

Radiotherapy begins on the 27th May and will run until the 16th June. I'll be there for 10-15 mins per day, and it'll be painless, so they say :). So not long til the end of treatment at all!!

Today is the last day of anti-sickness pills! My last domperidone will be tonight!

Write soon!

my last ondansetron

... was today

I'm down to just ONE anti-sickness pill now - 2 more days of that until I have just the anti-congestant... and one week or so until I have NO MORE PILLS!

Wow, it's all finally coming to an end.

In general, I'm tired but feeling okay. Trying desperately to keep my mind busy, alongside keeping my taste buds busy too - this time's yuckmouth is unfortunately too close to what I tasted in hospital on Friday.

I must've thrown up at least 10 times, all whilst dealing with the side effects of the chemo being pumped into me. It was one of the hardest days of my life for sure. I guess, if you wanted an ending, it was a grisly one.. but it felt like it was an end. A crucible of an apt ending.

I think I'll take a couple of weeks off work to get my head together. I've started to think about life after chemo now the shackles of the chemo cycles has been lifted... more on this later on.

The next hospital appointment is on Wednesday, where we'll be planning my radiotherapy and, I'd guess, getting the equipment for it. By equipment, I mean they will need to have a plastic mould of my upper body with only tiny holes penetrating it at which the radiation will be aimed... I'd guess the rest would deflect it. I may even need tattoos apparently to pinpoint exactly where they'll be aiming the radiotherapy... we'll have to see after Wednesday. I'll doubtless need another CT scan, too.

On Thursday I am going to my GP to get some crazy dental toothpaste for radiotherapy patients. I went to see the dentists last week in prep for the radiotherapy (they passed me dentally fit to be zapped!) but said I needed some special toothpaste for poor chemo gums.

I'll have more info on Wednesday

I did it!

Well, I did it. No more chemo!!!!

It was the worst one ever. Oh my, do I love irony. I was keeping it together but completely lost it at the smell of the tape around my cannula and the taste of the domperidone. Cue about 10 voms throughout the chemo :( I am normally in and out by 3... Yest I was in til 8 cos of how horrifically nauseated I was. Most of it was mental rather than physical... As I say, v ironic that I only buckled mentally on the last sesh

But its day 2 now and I'm slowly inebriating myself on anti emetics. 

And, suffice to say, it's tinged with victory. 

I did it!

I'll write soon

Tom

ps Hi Nan and Auntie Jean!

100 days later

My hair is thinned. My veins still ache. My muscle has diminished to nothingness.
But my mentality endured.

at the end of chemo

I've almost made it
Tomorrow will be 100 days since chemo began on the 29th January 2015.
And it feels like its been really long time.

I never believed I'd be the one going through this kind of thing, much less actually experience it. I never thought I'd get used to feeling that sharp spike of pain as the cannula hits my arm. The cold chill as the drugs smash through my cracking veins. The flood of relief as the drip is disconnected. The rush of nausea as I stand up for the first time, with cytotoxic drugs sloshing around in my veins. The nights of near delirious agony, clutching my stomach and telling myself it's one more down, Tom, it's one more down.

And, now, I can't believe it's (almost) all over.

Obviously at the moment I don't know how I will feel, on the eve of the last infusion; I'm imagining massive relief, alongside the inevitable nausea (the apprehension for which is turning my stomach even now as I write this). I really hope with everything I have that I have beaten this thing. That's that. Done for good. And, hopefully, life is there for me to reclaim.

I've been thinking a bit recently about who post-cancer-boy Tom will be. It's a bit strange, actually; I don't think it could be said that I'm an apt subject for one of those Hollywood-esque narratives wherein an originally obnoxious and self-centred boy turns into caring sensitive man via pain and adversity. I was already quite empathetic and not particularly self centred. Perhaps, behaviourally, it will have made a change. But, mentally, I think it might have just ossified things I already knew about myself, alongside shortening my shrift for things in life that people care about that I'd always kind of suspected were meaningless.

But let's see. I have one more infusion to go, 36 hours til it's all over. I can't wait for that final needle to be removed from my vein.

Bye chemo. It's been educational but, seriously, I will not be sorry if I never see you again.