Lymphoma Hat-trick. RIP Rowhan

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  • 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 incredible­andrew-coe

  • 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

  • Have you spoken to the Citizens Advice Bureau about your benefits situation? I've had a bit of experience with similar situations to yours and they've worked wonders for friends in financial situations similar to yours alongside serious illness.

  • 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.

  • Mate - this is shit.

    I'm afraid I know very little about how the DWP works, and can only think that there may be people that can advocate on your behalf.

    Could something like Turn2us give advice?

  • Done. Best of luck with this and fight the bugger!

  • 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....

  • .

  • bump

  • How about getting your MP involved? They can be highly effective in situations like this.

  • Drop an email to Henry Smith MP, who chairs the all party blood cancer group.

  • Bump! Big hugs!

  • Bump. Going past that goal, man. Good luck. Some great messages on your page.

  • Bump and largely symbolic gesture from me.

    Fucking DWP, to be put in this situation is outrageous. Hope it goes well on Tuesday and H(eal)TFU as quickly as possible.

  • Bump! ❤️❤️❤️

  • This might be a dumb suggestion (or something you’ve already tried) but have you talked to Macmillan drop-in hours? They are basically masters of finding benefits that you may be eligible for ...

  • Done. This sounds tough as hell. Best of luck buddy.

  • Were are you? You will have been through a head and neck MDT clinic and have been allocated a MacMillan CNS. Thay are utterly brilliant and would be my first port of call. Hope it all works out for you.

  • Bump.

    I've added to the total.

    Looking forward to once again seeing you whizz past me going the opposite way through Clapham.

  • Bumpety bump. I'm trying to help sort a few things out with the benefits situation but I think it is going to take some time.

    Andrew is having surgery tomorrow morning.

  • Best of luck Andrew!

  • 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 😆

  • Sounds monumentally frustrating and shit. Hope things resolve themselves soon. Good luck.

  • 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...

  • Andy, mate this is shit news.. soon as I get paid I will donate. Sending epic vibes until spondooleys arrive.

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Lymphoma Hat-trick. RIP Rowhan

Posted by Avatar for Rowhan @Rowhan