I feel there is a more appropriate thread you can update from here on in, oh titanium wünder piece owner...
https://singletrackworld.com/forum/topic/wc-dh-tech-randoms/
Well that made difficult reading but thanks for the update poops...... it's good to hear that things are looking up ☝️👍
All credit to you for being so open about it, cant have been easy. All the best for the recovery, hope it goes smoothly from here on.
Well this is making the old "my vasectomy was awful" threads shrivel into insignificance 😳
shrivel into insignificance
I’d refrain from using that description! Read the room man!
(Sorry, going to be messy as typing this in a hurry whilst in the mood to do so.)
So, just over a year since everything kicked off so a bit of a catchup is due. There will inevitably be numerous double entendres both intentional and mistaken. Also i dont mean to offend anyone else going through their cancer journey or caring for someone that has it.
If you remember i was discharged from St Georges after 2 weeks or so and that was great as it meant my old mum wouldn't have to go into emergent care. My sister had bailed if you remember. Well... I was fine for 4 days after discharge then BOOM the initial chemo i was on led to the modt painful gout I've ever had. I've had gout in a big toe once or twice in the past... this time it was in both feet, in the big toes, the toe next to them and the ankle. I cannot describe how painful gout is. I used to think gout was lfunnyl until i had it!😁 It got so bad over 3 days that i had to p*ss into a little plastic pet carrier as i couldn't make it into the toilet from my bedroom. I called up my local hospital to cancel my very first haematology with them. A little later the consultant called back to say he was very concerned at me not attending and that the gout needed investigating. He hinted that he would call an ambulance if i didn't. So... I called up my son to bail me out. Again. He dropped everything and comes over to look after my old mum. I call an ambulance (couldn't walk to my lads car... I had to get down the stairs on my arse with my legs in the air to let him in... Its doable, trust me), a paramedic in training kneels on my toe whilst taking my blood pressure... "I screamed like a little girl" according to my son who was upstairs. I'm given morphine and it helps a little whilst i am sat down, but as soon as i tried to stand even the morphine didn't cut it. In the end i walk on hand and knees to the gurney in the hall and haul myself onto it, with my lower legs/ feet bent up into the air so they are off the ground. Wheeled into ambulance as curtains are twitching in the neighbours houses in our usually very quiet road.
After a while at the hospital in put up onto a ward with other cancer patients. Humbling. There are a few guys there I'll never forget but that's not for this forum. Some won't be around by now. I have to use a commode as i can't walk a single step without being in agony. Even the bed sheets touching my feet hurts like a pig. Outside, the heatwave continues, just a it did in St Georges and i wish to God I was on the SDW moaning about running out of water or a crash. On second day i tell the doc I'll *have* to leave by 31July ( 3 days from then i think) as my son was starting his new job in the police and i had to be home to look after my 94 yo mum. I'm jabbing loads of blood tests etc as they think I.might have an infection as well as the gout. Feet are now like balloons, swollen with fluid.
My local hospital is very different to St George's. Massively understaffed, ward ffittings falling to bits but the staff doing their absolute best. As always. Patients in the ward with only a few months to live and knowing it, guy next to me totally abandoned by his family, his phone flat and no charger, nurses doing the jobs 3x their number would struggle to keep up with. The 31st comes. They are still unsure about infection but they confirm chemo brought on the gout but either way, ive got to go home. Doc and nurses not happy but i tell them i have to discharge myself. Sign a hand written disclaimer on the back of a menu sheet. Given another lecture on how stupid i am being and I totally agree but there is no choice. I'm *not* going to potentially jeopardise my lads new career or put my old mum into some emergency care where she will totally lose the plot due to her dementia. Son picks me up with my mum's wheel chair and we head to his car.
Home. My lad and my partner have adapted my mum's room for me to sleep in on a blow up mattress, small tv installed in the room and cold food and bottles water all in the room along with my and mums meds. The plan is to live in there till i can walk again. I ordered builders knee pads whilst in hospital. For first 2 days i use them to walk around on my knees (feet up in the air) to go to toilet, give mum her meds and stuff. I live off tinned rice pudding straight from the can. I don't mind, I like it and I'm HOME Son and g/f come over with care packages.😁 On day 3 i can make it downstairs on mums stair lift. Feet still agony but i start getting mum down stars and some sort of "normality" returns. After a week or so my feet can tolerate a pair of slippers with a big scissor cut down each side. With a walking stick and these slippers i.l am able to get to corner shop... though I'm walking like I'm in in my 90's as feet still very painful and i just have zero energy. This goes on for weeks. The gout improves for a day or two here and there and then another wave hits. All toes affected in both feet as it's worst and going into the ankles too, that's new. Gout. Is. Not. Funny. After about 6 weeks i can fit my feet into a pair of wide fit trainers i order. I found out that the Allopurinol meds (to prevent the gout my chemo can cause...) I was given in St. Georges can also bring on gout in the first few months of taking them. So the gout was a combination of anti gout med and the chrmo... Such is life. Haydn starts training to become a cop, my partner (we don't live together) is the dictionary definition of patience and love. I owe her and my son anything. Welling up as i type this.lol Im still very angry at my sister.
Imatinib.
The wonder drug, my saviour. I have "novel" Chronic Myeloid Leukaemia. Novel? The Philadelphia chromosome is mutated but not in the usual way. I can't begin to tell you the intricacies. I do know that it could mutate again and that could be bad...but as it stands bloods are looking good, my skin isn't transparent, I dont look ill like I did energy is returning. I miss my bike rides.
Cocks and Concorde.
As mentioned in a pst update. "I am titaniuuummmm"... Well, part out me is. I have a third ball in my scrote that i press to pump the little guy up and lower down the "assembly" is a button you press to deflate. I'm taught how to do this by the obligatory "attractive nurse" up at UCLH in London. When I first manage to do it she says (in the manner of a mum congratulating a 5 year old on his drawing of a dog with crayons) "well done you, well done! I don't feel in the least patronised. I have done well, I *am* a good boy, I am very chuffed.😁 I have to pump it up one or twice a day, leaving it inflated for half an hour or so each time. Its actually pretty easy... Apart from when the bulb pings out of my grip and hits my nuts. That's not great.
I already knew there is the chance of the head of my cock drooping even with the implant. Its called lglans droop"... Also known as "Concorde cock"... You can probably guess why. Suffice to say it now looks like as well as pumping the little fella up I'll also have to rub a cream onto the helmet to get that to harden up. Spontaneity might be out of the window. Also, from the scare in my scrote right up the underside of my todger up to the tip... Its utterly numb. No sensation. That's not great but nothing to be done. Obviously some nerve damage there and it's unlikely to come back.
Now.
There s a lot I've forgotten, it's been a bit of a blur. Some other stuff is just too lengthy. Ive put on a lot of weight, id like to blame the chemo as it can do that but in reality it's pizza and chocolate. And pasties. And pies. Imatinib still doing its job, one type of blood cell count is a bit low but consultant isn't concerned and that's good enough for me.
I'm now trying to get Zwift set up again and build up my beloved Jeffsy ready for some late summer short rides. No SDW this year, or even Peddars Way... But next year? Perhaps. Got to take my biking shoes down to cobblers for him to try and knock some extra width into them. My feet are buggered now. Ive now got painful bunions but NO MORE GOUT! I can line with bunions.
Mums dementia is getting worse, it's accelerating and I know there are tough times ahead.
Not going to lie, I've been struggling for some time now to the point where the cancer is very much at the back of my mind these days. That's a luxury I am lucky to have as the treatment is going well. I'm aware it's not a luxury many cancer suffers have.
So that's it for now. Some things could be a lot better but I'm glad to be around still to worry about them a year later. Can't ask for much more.👍
Talk about rollercoasters!
I tip my hat to you for surviving with humour and compassion. Have a hug from me
If you remember i was discharged
🤭
Some other stuff is just too lengthy
🤭
Jesus Mr Scoop! You’ve been through the wringer and dealt with it better than most would. The candid and highly amusing way in which you’ve coped with all this is unbelievable. Massive love and hugs from the Funk family to you and your mum. Congratulations to your son too.
If there is anything I can do please drop me a message. I live in Macclesfield but can easily travel if you need anything 👍🏼
I love you, Poop.
That's not a lot of help, but I do nevertheless.
Not much to say mate but absolutely top effort. You're ****ing nails.
Hard as ****ing nails mate, and still thinking about others the whole time.
Certainly puts day to day frustrations like the oven breaking into perspective.
Cripes! Hope you get a break!
Wow! So impressed at what you’ve got through and the Frank, honest and amusing way you write about it. Keep at it, and try to look after yourself too, anything any of us can help with, ask, as you know we will…
Well you have certainly been through shit Poops, jeezus! But well done for keeping positive thoughts, yeah some late summer short rides soon, once you get your footwear sorted out, and SDW next year! 👍
I've just looked up stoicism, you have a mention in the definition. Have a big man hug and keep on keeping on.
I am amazed and humbled by the way you can recount such a grim and overwhelming set of circumstances, and still inject so much humour and positivity into the telling of it. What an incredible attitude, you are one tough cookie. Things will get better. One day, you'll be on a sun dappled woodland trail on your Jeffsy, savouring how special that is. Fingers crossed that happens sooner rather than later 🤞🤞🤞
That is some epic level keeping on keeping on.
You have done so well to get through all that, let alone document it in such an upbeat way, while still being brutally honest.
Your son and partner have been amazing too
Well done mate! Reading your posts makes my own cancer journey feel like a walk in the park.
Thanks guys, really.
@bearnecessities I love you too buddy!😁
Ooh, one very little thing that happened and makes me smile and cringe in equal measure.
I'm up in London to have the little guy checked out a few weeks after the op.
Consultant in room, another doctor, both male and a student of some type... Inevitably the student is female...
In all honestly these days I'm just used to pulling my cacks down and letting anyone that resembles a doctor have a fondle upon request.
Consultant had a fondle, other doctor had a fondle... Then the consultant asks if the young female student can have a fondle. So the poor girl had to have a fondle of some 54 year old, vintage knackers and prosthetic cock.
All done, I get dressed and say thanks to both the doctors as I go to the door... then I pause just enough to make it weird... and look directly at the poor female student and say "thank you" just at about the same time as the sentient part of my brain was screaming at me, "Don't you say it! Don't you say it you freakish piece of sh*t!"... Too late of course and I slink out of the door to the sweet, sweet beauty of the waiting area.
Where no-one knows of the weirdness that just happened.😁
JordanFull Member
Well done mate! Reading your posts makes my own cancer journey feel like a walk in the park.
I dont think there is any such thing mate (walk in the park I mean) and I hope things are going well for you too. Apologies if I've missed a post, not been on here much for a few months for "reasons." Nothing to do with STW I should add!
Where no-one knows of the weirdness that just happened.😁
Hehehe....
You're some stoic dude. 👍
I was reading your update planning on posting "yeah, never mind all that mate, how's your nob?" But then you covered that off too, so... 😁
Honestly, I want to say something but I don't know what. I reject platitudes in either direction. Just... I guess, keep on being you, people are here, listening, concerned, and taking the piss because otherwise the alternative is worse. Right?
"I'll laugh about this one day." When you're feeling a little better, get yourself up here one weekend somewhere in the land of the folically challenged pastry-fuelled lad with the crayons and we'll guarantee that.
When you’re feeling a little better, get yourself up here one weekend somewhere in the land of the folically challenged pastry-fuelled lad with the crayons and we’ll guarantee that.
Ha ha! Now that's an invitation take up one day! 😁
So well done! In your place, I’m sure I wouldn’t have the fortitude and humour that you have had. The energy you spent on updates - despite all you are still going through.
Ha ha! Now that’s an invitation take up one day! 😁
To coin the phrase of, I forget now if it was Billy Connolly or (master distiller) Richard Paterson, "you lazy bastard, it's no' that far!"
PoopscoopFull Member
JordanFull Member
Well done mate! Reading your posts makes my own cancer journey feel like a walk in the park.I dont think there is any such thing mate (walk in the park I mean) and I hope things are going well for you too. Apologies if I’ve missed a post, not been on here much for a few months for “reasons.” Nothing to do with STW I should add!
Cheers Poop! All good here, two years all clear after a year of Immunotherapy treatment. Which had it's downs but, well you know..you just get on with it and hope for the best!
Good news you're on the mend.
@poopscoop, I'm glad to hear you're on the mend too. I'll admit to missing all the stuff after the first couple of pages so had no idea about anything after the thread title. Sounds like you've had a tough time of it but I admire your dedication to looking after your mum and the extra pressure that's put you under, just make sure you're taking the time to recover too.
We've never met but you had some kind words for me when my dad was ill and subsequently passed away last year and always used to give me a thumbs up when I used to zwift so I have nothing but best wishes for you.
Also, I'm not a million miles from St George's so if you ever have the misfortune of ending up there again feel free to let me know and I can smuggle you in a Greggs
Truly inspirational determination and fantastic support from those closest to you. Keep on keeping on
@Jordan, may that 2 years go on for a very, very long time.👍
@swdan It sounds like you've been through the wringer and I'll let you know about that Greggs! I won't lie though, I hope I have no need to ask for a food drop.Lol It was a great hospital but I'm all "hospitaled" out.😉
Just a small update.
Just had my latest phone review after my recent blood test.
The "molecular response" (I think he called it) is on track and I've only 1 cancer cell per 10,000 cells. I think he said that anyway... I really should have a paper and pen handy.
One type of white blood cell had been low since I started the chemo. It's been at 1.2 and should be at 1.4 plus. For some reason it's 1.9 now so that's good. It's important for immune response apparently.
Still have Concorde cock syndrome but that's another matter.
Getting tough at home these days. Mum hallucinating all last night so zero sleep and feel like crap. She kept seeing a young girl at the end of her bed with matches in her hand or something. I try to convince her it's not real but of course that doesn't work.
I f******* detest dementia. It's a hateful disease. Next year is going to be bloody tough but at least I'll be here to see it. I wasn't so sure about that a year and a half ago.
That is great news about your personal health, but sad about your mum. Now might be a good time to mention that I have been pretty inspired by the way you've handled the hand of cards dealt to you. Your optimism, humour and upbeat attitude are awesome. I've had a few health issues over the last 2 years including a cancer diagnosis (not life threatening at the moment) and seeing the way you have have dealt with your issues has given me a real lift. So thanks for that. You are very definitely one of the good guys on here. I really hope things pan out as well as possible with your mum, I think you have the attitude and resilience to deal with it whatever, but be kind to yourself and vent on here if you need to. Happy Christmas to you and the Kraken!