Search results for:

Cheers for the donation.

I forgot how awesome this forum is sometimes...

This is essentially the treatment everyone's hoping I get accepted for SOMEWHERE anyway.

https://eandt.theiet.org/content/articles/2018/03/chemo-free-cancer-vaccine-moves-to-human-trials/

In its infancy but basically the only chance I've got

Sorry if that's a total jumbled mess of thought spaghetti, but I needed to get it all out. Last 24hr's has been a hellish rollercoaster of distraught phonecalls and generally upsetting pretty much every single person I've ever known

Well, I had my Oncology/ENT meeting yesterday.

Same type of lymphoma found in both tonsils, not just the left one as had been anticipated. 3rd time around seems to be dramatically more complicated to treat long term. Dramatic enough that if I don't make it on to a new type of trial drug program that I've essentially got about 6 months left.

Yup, 6 months.

Having a PET scan either Monday or Tuesday so they can workout how many tumours there are other than the few we've already discovered lower down the left side of my neck. Hopefully it's only stage 3 at the moment, but could well be stage 4 already given that I've had some mild pain in my liver and small intestine in the last week.

The treatments I had first and second time around will be tested on cell samples to see if there's any reaction this time, then I'll likely be straight in to St.Georges for a few strong and narrowly spaced rounds of chemo to reduce if not get rid of the tumours I already have.

If that doesn't make any serious inrodes in the disease and extent the time I can wait for a trial place to open up for me, they've said there really won't be much hope unless I get accepted for the same sort of trial in France or Germany.
Failing that, the last hope would be a trip to the US but the treatment would be likely to cost in excess of £100,000 maybe way way more.

The reason I've been given for the outlook being so bad is that it's the fact that it's back at all, a third time, after a successful stemcell transplant. The odds of it coming back were very low i.e. 2-3% per year at this point but it having come back now poses new challenges because we're out of conventional drug combos that are going to have more than a temporary effect.
We can completely eradicate every cell with the same drugs as last time and i'm almost guaranteed to have a recurrence within 6 months, which is why they've said my only real hope is the new Cancer "vaccine" which will train my body to have a strong immune response to Lymphoma cells in the future.

Cheers.

On a plus note, as always the frustration triggered a 40min turbo ride.... which then triggered a mood boost, which led to food, leading to energy, leading to another 55k around Richmond park.
This then led to cramps, further hunger and a hunt for beer... and as a result of that I've probably just consumed as many calories in the last 6hrs as I've managed since surgery.

Every cloud etc...

Cheers for the massive donation boosts guys @Señor_Bear and @dancing james @Dammit, @Stonehedge , untaggable teenslain and a few others.
What you've given me alone has been enough to let me do a LOT of overdue life maintenance. None of it's going on bike related stuff (other than a spare hanger so I can attempt to ride between whatever end-boss level treatments might get thrown at me over the next x months.

I only had a little unpaid on a credit card, but that's another small weight off my shoulders. Another months rent and council tax covered and British gas are off my back about settling an account.

The only major, and I do mean MAJOR problem I've got is that while got more and more Ill I didn't register my limited company as dormant with HMRC. I instructed my accountants back in September to cease ALL services and stop logging of payroll with HMRC.... however...

....they carried on charging me each month, and told HMRC that I'd been drawing out £680 a month all the way up till this month, despite bank records clearly showing no invoiced income and no withdrawals for 6 months.

Where it really gets messed up is that it turns out THAT'S why my benefits are as low as they are - they think I've been running a business on the sly (ALL records prove the exact opposite).

I'm now being investigated for benefits fraud for non-discosure (while previously suicidal and physically broken) of being a Director of a company despite it clearly not trading. Essentially they're now fixated on imaginary earnings despite me now instantly sharing business and personal bank records with them and have blocked further benefits.

I'm 2 days away from finding the 'verdict' of my biopsy and what's in store for me... and for all intents and purposes, mistakes by me my accountants AND the DWP have combined to make the time I need to be the least stressful, the most stressful I could ever imagine.

DWP issues are being handled my an aunt.
HMRC I have to make an arrangement with.
My health is in the hands of the best but most abused and neglected healthcare system in the western world.
My career's destroyed and unlikely to ever be resurrected again.
Just to make it even better, I'm likely to be persecuted if I'm spotted doing any exercise outdoors + I still haven't done my PIP assessment (going to be soooo fun)

At least I've got LFGSS, guys.
Means so much that people will rally around someone trying to show off by having cancer a third time 😆

.

Thanks a lot.

@TW I feel like the entire system has been intricately designed or redesigned now to obstruct anyone, even medical professionals having the final say in someone's condition and suitability for work. Every conversation I've had, even with the actually really concerned case manager I've been assigned, has concluded with "Our hands are tied. You have to fill out this form and that form etc.. for independent assessment".

I think the reluctance to directly confirm or disprove someone's medical state by a simple phonecall to a doctor etc. speaks volumes. Detailed medical reports from a hospital are apparently trumped by a GP's long term sick note. Only problem is by GP surgery has consistently let me down over the last 6 months and don't have any relevant information about the current situation, so they're not happy with being who signs me off.

...and so the merry-go-round spins on....

Don't know what they can do in terms of actually stepping in on my behalf or taking over claims discussion/resolution though. What's compounded this the most now is that I'm not really going to be able to talk to anyone for weeks as of Tuesday, so I'm not really going to be able to have any ongoing dialogue with anyone either way.

Sorry if any of that's a rambling mess. The last 4 or 5 months of mounting distress and pressure finally overwhelmed me yesterday and my mind's a bit ragged

Not sure where to start this really...

I had an appointment with a specialist Head & Neck / ENT surgeon yesterday as a follow up to seeing a general ENT consultant.

Turns out he thinks my tonsil problem isn't a viral infection (1st diagnosis Dec), nor a fungal infection (2nd diagnosis late January, nor Tonsillar stones (3rd diagnosis early march). He described what he suspects is more than likely an aggressive ulcerative malignant recurrence of Non-hodgkins again.

Surgery which was due to be in a few weeks is now happening on Tuesday morning, after he basically shunted me the the very front of his list... The bad tonsil, good tonsil and another piece of my throat around the bad tissue is due to be removed and cauterised.

After 4 months of crippling depression brought on by complete inaction or urgency (until now) by anyone I've pestered about this. Heavy resistance by almost everyone I've tried to talk to about emergency benefits. Being forced to attend job seeker meetings.
My previous employer (job officially ended on Jan 10th although I'd already been signed off from mid-december) reported my tiny Jan earnings as being Feb earnings. This conflicted directly with my earnings declaration which set off all the DWP's alarms. HMRC corrected their records, the DWP have seen my P45 confirming everything I'd originally told them.....

And still I'm being refused the benefits I should have been due since January.
I've received the grand total of £119 and just don't know what to do now. All savings are gone, overdraft almost maxed out, and unlikely to be able to work again for at least another month.
I still owe rent for last month and this month is still unpaid. Ditto council tax x3 months.

I wouldn't come here unless I was desperate, but having already been through this scenario 2 times, and had to frantically rebuild my life within months of treatment without really ever recuperating, I'm really not going to get through it all again without doing it properly this time.

I have to stress nothing's 100% confirmed with the surgeon's diagnosis because it obviously takes a lab test for proof but he's told me he's seen what's in my throat enough times that it's more to be sure than really determine anything. The full tonsillectomy I'm having is also the biopsy I expected to have yesterday. He said we can't wait for that, so it's being done the other way round.

This page I've set up goes some way to explain the situation but the writing space isn't nearly big enough and the situation is just so complicated now I'm not sure I could even work out how to explain it fully if I tried. I just want to be able to hold myself together for the next few months and re-emerge out the other side of whatever this ends up being, without any debts, having been evicted, or not having had a chance to recovery properly this time.

ANYTHING anyone can do to help would be incredible

https://www.justgiving.com/crowdfunding/andrew-coe

Ditto. Not been in about 3 years! Definitely be up for this

Anyone about?

Will pop down for one if anyone's about. Been months and months!

It's_Fucking_Kosher!

Summer gear donned. Up in a bit hopefully.

Not massively bothered about it being 2nd hand as long as there's no obvious damage and nothing more than light heel rub in terms of wear.

If anyone's got one and needs to get rid, suggest a price! Cheers

Anyone going to be up't hill?

I would try to bend it back in to place, but the dropouts are full carbon... and hollow. Thankfully completely intact. I might have to call around a few local shops and see what they'd do if I handed the frame over.
Just such a headache. Only got this bike back from Evans 6 months ago, them having completely fucked my previous SLR

Went to replace the rear mech and hanger on my BMC yesterday having noticed a bend in it after getting it out of storage at work.... only the damn star-headed microscopic screws holding the hanger in place are impossible to loosen.
It's almost like they were machine fitted and with a considerable amount of force. I honestly don't know how it's possible to get enough force through a 3mm screwdriver without fucking the frame and/or the screws and/or my hand in the process.

Anyone got any clever ideas?

Aaah yeah. That does make sense actually. Real shame though - I think it was only the monthly calc that was wildly off, but the weekly and daily seemed pretty accurate. Hope it comes back before the festive 500

Anyone have any idea what's happened to the Daily/Weekly/Monthly mileage trackers on the righthand side of the dashboard?

Seems to have reverted from an extremely useful tool that lets you know how many miles you should do each day or week, to the single intimidating figure showing how I'm 219miles behind my target at the moment!

"Inconclusive. Ultrasound is rubbish for bowels, which is why we never do them. Why were you referred to us?"

" I don't know - I asked for a CT scan to get a very clear answer of what was going on."

"Well, there's always too much gas obscuring the images for ultrasound to work. You should have had a CT scan really."

"So can you see ANYTHING that jumps out at you on the screen?"

"Can't tell if there's anything there... or not there really. Too blurred. Probably be another month's wait for a CT, just to let you know..."

"Thanks."

Happy fucking christmas

Ultrasound abdominal scan in T-minus 4hrs...

Really hope the month of stomach pains I've had is just a work/life related stress issue so I can tell my client I won't be in again this side of christmas. All I want to do is go out and get some day-time riding in again. Feels like it's been months!!

FML

Might know someone who'd want this. Provisional dibs