Cycling with cancer

I'm amazed you managed anything at all. My treatment finished more than a year ago and I'm still fucked. I'm hoping to get back on the bike, or at least get running again, in the spring, but my main problem apart from the chronic lack of stamina is that I have absolutely zero tolerance to cold, especially in my fingers and toes.
Keep it up.

Just sitting in the wind at Herne Hill station this morning I felt like the air was passing straight through me. Even at home in jeans, jumper and slippers with the heating on, I still feel a horrible chill, so no idea what riding in this weather will feel like.

I did manage one slow steady 25 mile group ride back in September a week after chemo course 1. Started physically shaking on the final 5 miles back home. Shaking that then carried on for about 3hrs or so...

Really don't want to experience that again. Unlikely I will though considering my total lack of energy for who knows how long. Really hoping a few gentle gym sessions will wake my muscles up and reduce the permanent arthiritic ache I'm suffering from at the moment.

Layers Andy, base layer for indoors. And leech off Emma's warmth!

Donated.

Keep grafting. Three days after my last chemo I rode at SSUK 2015 - I was shit, but the secret to getting through it was not giving a shit where I came. Just don't back down.

All the very best for the new year...

Cheers Bullheart - really appreciate it, even more so knowing you've been there and probably had money struggles while you were (are?) Ill. I've put it towards a months gym membership starting in the morning.

Chances are I'll need to force myself back in to part-time work from Feb onwards, but my doctors aren't too happy with that plan.

It is brutal. I'm sorry I couldn't give more, but my wife is currently a student re-training and we're having to make do on my salary; with kids thrown into the mix the money thing can sometimes be exhausting.

Two things: Macmillan grants are useful and can be accessed every six months (I think). I used mine for travel into London from Kent and it proved a godsend. Get your treatment team to help you with the application. Secondly, and in no way a flippant statement, look at diet. I modified what I was eating (because all I could fucking well taste was metal anyway!) to include food that was both high in nutrition (recovery) but very low in cost - lentils, pulses, tinned tomatoes for pasta etc. Our family of four now eat for less than £40 per week.

I hear you on the Macmillan thing - will make all the difference really. Still waiting to hear back on their decision (only got round to applying mid-december).
Ditto benefits - applied well over a month ago and obviously asked for the full 3-months back dated too. How much the 2 initial lump sums end up combining to is what will make the real difference in terms of recovery time I'll be able to allow myself. The weekly amount after that will inevitably mean I'll have to try to start working again around a month later before I go well and truly in to the red.

Got my first 8 miles in today anyway. Planning on adding another 4 miles on each day for 3 days, and 10% per day for a month after that. Lets see anyway- Didn't feel fast by any means and my average HR was around 175 which is in line with what it was last time round, but strangely I didn't feel weak either and no painful shortness of breath.

Just had exactly that for dinner tonight - Whole-wheat penne with a 40p tin of chopped tomatoes, a chopped frankfurter, herbs and garlic etc. Probably no more than £1 total. Hardly haute cuisine but filling and nutritious - definitely the way forward

Hows your recovery and long term situation going anyway? I've literally only just gone back and read the last 2 years worth of this thread (again? who knows; chemo brain innit) and had no idea how intensive your treatment had to be in the end.
All going as hoped?

I've noticed something strange lately, an unexpected aspect of the neuropathy from the chemo.
I can't fucking open jars and packets of stuff anymore. Even things like packets of crisps (not that the saliva glands would allow anything so sophisticated) defeat me, and I have to open them with scissors. I nearly launched a bottle of passata through the kitchen window over the weekend because I was absolutely unable to get the lid off. I was even contemplating smashing the bottle into a saucepan and then straining it though a tea towel .
In the end I punched holes with a screwdriver, then ripped the lid with a mole wrench.
I was always the person who got handed the things that nobody else could open.

Overall though, not bad. I'm back at work full time, and not taking any drugs.
I haven't been given the all clear, but I think I'm doing ok. I just have to wait for UCLH to tell me to stop coming.

Bloody thank fuck for that - I thought it was just me. Had to ask my girlfriend to reopen a jar of gherkins for me the other day..

Guessed it was just the drastic change from gripping handlebars for 3 or 4 hours per day to holding them 3 or 4 hours a months that did it. Probably a combination of both really, but it's got to be something that improves with a lot of perseverance isn't it? A bit like relearning to walk after months in a coma.

Something I noticed while filling out a form the other day was that I or rather my hands had almost completely forgotten the once daily movements needed to do joined up writing...
Seems a lot better after a few hours practice.

Good to hear you're ok - it's the damn limbo of never knowing if or when 'it' could strike again that's the worst though isn't it? I'd go through another 5 courses of chemo now if someone could guarantee 100% that it'd never come back again. Just want my normal life back to be honest...

Maybe we should start a Difficult Jam-Jars thread...

I already attend a support group for this in Penge. Along with a Shoelaces group, and a 'Turning Yale keys in a tight lock' group.

Flippancy aside, you do mourn for the things you lose through treatment. I used to be legendary for going out in all weathers in a t-shirt and shorts because I simply didn't feel the cold.

Now I am cold to the core, even when it is temperate. I feel like my (albeit shit) superpower has gone. Fucking Kryptonite. Er, chemotherapy...

Yes! Everything is bloody cold. I feel like Withnail, needing to cover myself in deep heat and get up against the radiator.

Hello all,

My wife wants me to paint our shed. In order to get out of it I said the first thing that came into my head. Which was that I couldn't because I was walking up Snowdon with a fridge on my back to raise money for Fightforlife.org, a small UCLH affiliated charity for children with cancer. Clearly I hadn't really thought this through, because (a) I already have cancer and (b) I had half my back removed in October because of cancer.

But I really don't want to paint my shed, so there you go.

https://www.justgiving.com/Team-Bullheart/

Most of you know my story (http://www.team-bullheart.uk) and some of you have even raced for me, helping to raise money for charitable causes. Do me a favour - even if you don't fancy chucking a quid or two in, share the following link on your respective Myfacebookspace pages and pass the message on. It's a win-win; we help smash childhood cancer and you get to point and laugh as the bovosapien hybrid cries a bit as he hits the pain barrier in the car park when putting on his 'fridge'...

All the best,

bullheart

http://www.team-bullheart.uk

PS: On a genuine note I'm looking for corporate sponsorship for a genuinely tough challenge in 2017. Please drop me a line if you feel you could help via the Team Bullheart website.

I'm going to a wedding this weekend, and it will probably get a bit messy.
I'm searching for a good Karaoke tune which is throat cancer friendly. Will probably go for this...
https://www.youtube.com/watch?v=zkj_ov_0LA4

but open to suggestions

Turns out that they slightly zapped my thyroid gland while I was under the big machine, so it's not working quite correctly. It explains my sensitivity to cold and the tiredness, so it looks as if I'll be taking something called Thyroxine for the foreseeable future. One of the side-effects seems to be hair loss, so I hope the moustache survives...

Maybe you know all this but Thyroxine (quite often referred to as T4) is a hormone your Thyroid naturally produces. So I am going to guess the zap has resulted in you now being clinically hypothyroid which would explain the cold and tiredness.

Taking it (I'm going to guess it's levothyroxine?) can cause short term hair loss (and being hypothyroid causes hair loss too) but if it persists then get back to your doc it shouldn't be long term.

Likewise on the cold being felt in fingers and toes.

In fact my toes always feel as if they are just thawing out after a walk in the snow - 'Slightly tingling'. This does not changed - no better , no worse.

btw, my chemo finished 10 years ago and no, none, zilch further symptoms and no continuing medication either.

Best of luck@Bad Science and Bull Heart.

Best of luck to you too, thanks for the advice.

Many thanks fella.

Funniest cancer-related moment this month;

My oncologist, when discussing protocols for future treatment, used the line "I've got your back" when trying to alleviate my concerns, clearly oblivious to the fact that she does in fact actually have my back.

In storage, at the RNOH.

I laughed. She, alas, did not.

Argh. This thyroid function shit is making me miserable. I hadn't really twigged until they did the blood test, but the doctor did tell me that low T4 can result in mild depression.
I know it's just a chemical reaction in my brain, and it will all get sorted soon, but I've spent most of today sitting on my own in a room with no lights on, telling people to fuck off when they knocked on the door.
In lieu of the proper pills, I'm self-medicating with a marvellous cocktail of my own invention.
2 measures Gin
1 measure King's Ginger
Ice
Top with ginger beer.

repeat to fade

I'm trying to think of an appropriate Knock Knock joke, with a punchline along the lines of "fucking well leave me alone"...

Hope it gets better fella. You seem rufty tufty enough to weather the storm. And just remember; worse things happen at sea. Although my feeling is that this would only really be true if you were at sea, on a raft, without food and water, with fucking cancer.

This started as a bit of a joke. I emailed Tfl, pointing out that pregnant women get a twee little badge, but ill people who might like to sit down get nothing. I got a snotty email back, along the lines of "that really isn't very appropriate...", so I left it, but it's been bugging me for months.
Anyway, I got some badges made. My ultimate aim is to convince TFL that this is a good idea. Going though therapy is a ball-ache, and sometimes you just need to sit down. I had radiotherapy on my throat, so there was simply no way I could actually ask someone to move, and nobody would have understood me through the frothing at the mouth and the morphine.
The badges ended up costing me about 50p each, and I'm guessing that little padded envelopes and postage will be about the same. I want to knock out the ones I have for at least a couple of quid, and give all the profits to Macmillan.
Ultimately though, I'm not looking to make any money out of this. I just want to see if we can get Tfl to change their mind and start giving these badges out to people who might find they come in handy.
Please spread this as far and wide as you can. PM me if you want a badge, either here or via @moustachewax on twitter.
Oh, and Tfl, I fucking dare you to sue me for copyright. Taking a veteran and cancer patient to court is entirely the publicity I need.

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This is in danger of going viral. I was interviewed by the Evening Standard about this today, and I'm going to be on the ITV London news on Friday evening (pretty sure it was someone from here who pushed for that, so thank you, whoever you are).
Some very surprising positive replies to my scattergun email technique as well.

Watch this space.