Chemo no 8 - How to die with dignity?

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foggy said:
The last one was a fucker. No two ways about it. I knew from when the main course went in, a proper tummyflipper. I’ve explained the courses before and the attention seeking bellendery of a self pitying benefit scrounger using drugs as an excuse to milk an embuggerance in no way unique to me.

Chemo’s going in now or magic potion as I think of it.m. Anyway better than the last one, just a bit sweaty of the head but the drugs are in so here we go. Thanks for having me.

I get a better parking spot so it’s not all shit. I park in disabled these days and get a few stink eyes because I “don’t look disabled” but I’m legit, maybe I should lift up my top and show my brutilised torso. A 10 inch scar from the big op, a huge hernia like a bum sticking out with the scar as the arse crack, 3 bullet holes from the laparoscopy and my sticky out chest portacath. It’s an impressive mess.

The doc wrote a letter for work - incurable, palliative care, indefinite chemotherapy until the disease progresses. Now hang on, my defences are still up. 5-3-2 formation. The opposition is a cu nt but never mind ‘until’ Doc. I know you went to Doctor school forever but ‘until’ for fuck’s sake? What’s wrong with an if? What’s wrong with a kiss? Do we have to go straight to the clitoris? I’m a Sunderland supporter, faced worse odds than this, stopped up and everything. Beat Chelsea and Everton. Liverpool back in the day - when no-one beat them and at their place. Gan on Stan. If I’m going to have a relegation battle it will be on my terms. Until, fuck you my new least favourite word.

The bairn - 19 in 2 days time but always the bairn - broke her iPhone so I bought her a better one, two versions newer, to teach her a lesson. And then I got the old one fixed and sold it for £130, bought a lump of driftwood with an old fashioned fancy bulb sticking out of it. For £130 funnily enough. I love that lump of wood. No one else has it. You can’t get it at George.

I used to have a big house, worth loads due to the hyper house inflation of the 90’s to 00-ies, a 4 wheel drive with a panoramic sunroof on the git long block paved drive , dogs and of course me little baby girl, all pre divorce. Sold the house just before the crash. For loads but had to give most away. Divorce. Costs a fortune but f***ing good value. I think of it as an expensive training course.

Now I have a terraced home with a couple of bedrooms. 4 fireplaces, a big bay window downstairs and lots of trees outside where the birds sing. There is the ‘bumpy road’, no tarmac, in front of our houses, where us 26 in the terrace have to bounce along in our cars. 11 of us 26 have a big garden - it used to be an orchard. I don’t have one of those 11 gardens, just a bit out the front for me few plants and my Clock Stand seats from Roker. I sat in them with our lasses’ fatha 30 odd years ago. Last time, Chelsea, 85, already relegated, lot less there than the earlier Milk Cup match with the horrible fuckers that season, we lost, 12k there, traffic was still shit,great day.

She still puts up with me and now even makes tea properly. The little baby girl is just back from university this week, also made me a cup of tea the other morning. What else is there? I have reached the summit. I wouldn’t swap this place for the old house. This is my home.

It even has a ghost apparently. Christened Myrtle by our lass, she is convinced Myrtle doesn’t like her. She is fine with me though. Lives at the top of the stairs just in front of the bathroom.

The neighbours look after their gardens while I potter on. And at night I turn on my lump of driftwood for the ambience. Oh and my Himalayan salt lamps. They have ‘health benefits’, it may be a bit late for that but I got them cos they look nice and make me feel better when they’re on. I don’t know why I’m giving you a virtual tour of my little house, I think it’s a material things don’t matter and appreciate the simple. Yeah, that must be it, little home, birdsong, tea, ghosts, driftwood and salt lamps, happy.

Upstairs it is then. My bedroom was a double and a single originally but is now one room the whole width of the house, two windows looking out over everyone else’s nice gardens and trees, a real fireplace and a settee in there. Up again I have two loft rooms, not up to building regs, so nee good to the estate agents - 3 Velux windows though, get me - I can poke me head out and listen to the concerts at the cricket ground. Madness and Little Mix sounded shite, Tom was canny. I can see for bloody miles, Lumley Castle, the Cricket ground with its put up the other year lights. I wonder If I can get a roof terrace. The planners probably wouldn’t let me but that would be good. I could sit up there for hours.

My latest favourite simple thing is my toilet light. It sits over the edge of the loo itself, senses approach, lights up and scrolls through 8 colours while guiding me stream, I play the can I piss for the whole colour routine game. I have a circle of people who have been f***ing topper throughout this shite, so as a token of appreciation, have started handing out bog lights to them as a ta very much. They seem to like them, well they say it anyway. If you get a bog light from me it means I love you. Fuck flowers, say it with bog lights.

Now that I am on ‘indefinite’ chemo, my non chemo week is Christmas/Birthday/6 wins on the f***ing trot all rolled into one. Someone has just rang the bell in the chemo ward. That means they have finished their chemo so we cheer and clap. I’m happy for them but it hits me that there will be no bell ring for me. Anyway back to non chemo week. I can eat properly on this week, chemo is beans, jackets, cups of tea - Ringtons, soon to be Harrods blend no 14, cheers Flicky, tipped the bairn off for Pop’s day, think she’s on the case. Non chemo week is cookery time and even a beer.

I don’t want to be pity city or owt but how most of you feel all the time is bonus ball for me. I’m loathe to go into ‘putting things into perspective’ and ‘enjoy the moment’ bollocks. But enjoy it yer bastards. Stop moaning about work, traffic jams and other shit that doesn’t matter. Apart from pain - cancer hurts by the way, stings like a bastard truth be told - and impending slow drugged death at the hospice, I’ve never been happier. I mean it. I want more time because I’m a greedy get obviously but by fuck can I appreciate it these days.

Work are ill health retiring me and are going to fast track me using the 12 months to live form. Civil service. A form for every occasion. Piece of piss. The PIP form was 6 months to the big sleep and I got that so hopefully I can crack on with the last chapter sooner rather than later. Me and my dog(s) that I’m after. Missed out on a another Newfie from the rescue place this week. I’ll get there though. Proper retired and back to the dog walking days.

I’m in a private Facebook group for Young Adults with Cancer - 20’s,30’s’40’s the discriminatory fuckers. Dinnar if they’ll chuck me out if i string this shit out, but I’m 49 soon. There was a lass who posted she only had weeks to live, 31 years old. Bowel cancer, spread, wickets. It was the first time I looked at a path and thought oh that’s me. I imagined I was in her place hearing that news. I had a cry. For her but selfishly for me too. I’m cancer brave, whatever that is, mostly I suppose but there are moments when the overwhelm arrives with its too much to deal with shit. I’m on a cliff edge waiting for the doc to tell me what my body has already decided. Thing is the docs don’t kill you with their words, you do that to yourself when the programming goes wrong. But I can’t sit around being in the cancer deli queue with a ticket waiting for my ping to ping. I need to live the rest without thinking about the f***ing Sword of Damocles looming above me. I’m rambling.

I actually get more done now it’s a challenge. I was a lazy fucker before. I never had time to tidy up the garden but always had time to sit on my arse. Now I write down what I want to get done and more often than not do it. I did a big shop on my own last week. It wiped me out. All those years of being able and wasting it. I don’t do regrets or future worries if I can help it but sometimes I have a little ugh sound in my head. I try not to look at other people and think why me. In fact I do this very well but every now and again I could do with a break from this shite and wonder what it must be like to go back to the time before the last 15 months and feel like a not ill person.

I decided at the start, when the first doc uttered the cancer word, that I would have a dignified death. We only get one shot so I don’t want to be silly about it. At the very least I want to do better at it than my O levels. There’s no Death for Dummies so I’ll just have to work it out on my own. First bit is the legacy stuff. Make sure the bairn is catered for, she stands to inherit with me being sensible with pensions and life insurance. Then I don’t know. Get rid of the stuff out of the bedroom bottom drawer in case my mother sees it in the clear out maybe? Thanks Lovehoney but I can’t be arsed these days. I’ll put it in next doors but one’s bin. He’s 80 odd so will give the bin men a laugh if nowt else.
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I've cried reading this mate. Unbelievable post. Unbelievable dignity and humility. I don't know what else to say. "Best of luck"? "Fingers crossed"? They're trivial niceties that I'm sure you're sick of hearing.

Thank you for posting this. I'll learn from it and appreciate what I have in life a lot more.

Take care, mate.

Unbelievable.
 
Blimey. Not been on here enough these last years to keep up with anything like this, but all the best to you, Foggy. Ramble on and keep the dignity.

Right, I’m off for insurance quotes...
 
RokerLegend said:
Horrible news foggy - surely you oncologist thinks the chemo is still doing a job if he’s keeping you on it.

Pleased you got the IHR sorted. I used to be involved with that and the Capita consultant for the North East was a right twat - constantly sending people with your prognosis for referrals.
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I am getting my IH1 to fill in from 18/6, the day I next see the oncologist proper, to make sure she writes a suitably gloomy outlook with a quick turnaround, for the pension - it asks for be a dead by date - people.

So does the fast track, 12 months to go terminal diagnosis version, get me around all that referral shite, like the 6 month to pop it PIP one did?

Cheers. Appreciate stuff like this.
 
powerful inspirational stuff there foggy lad..... needs/deserves a wider audience tbh its wasted on the likes of us;). But I thank you for the sharp perspective
 
foggy said:
I am getting my IH1 to fill in from 18/6, the day I next see the oncologist proper, to make sure she writes a suitably gloomy outlook with a quick turnaround, for the pension - it asks for be a dead by date - people.

So does the fast track, 12 months to go terminal diagnosis version, get me around all that referral shite, like the 6 month to pop it PIP one did?

Cheers. Appreciate stuff like this.
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Are you having a "wake" mate?
 
I love your posts Foggy lad for all of their humour and positivity. As has been said, you do it on your terms and don't let a doctor dictate.
Kick it all ower Chester Market Square.

Your daughter must be really proud of you also.
 
foggy said:
I am getting my IH1 to fill in from 18/6, the day I next see the oncologist proper, to make sure she writes a suitably gloomy outlook with a quick turnaround, for the pension - it asks for be a dead by date - people.

So does the fast track, 12 months to go terminal diagnosis version, get me around all that referral shite, like the 6 month to pop it PIP one did?

Cheers. Appreciate stuff like this.
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Yeah if it’s fast tracked the capita doctor should be able to make decision based on the evidence provided. However I’ve seen cases in the north east region where two individuals have been fast tracked but still sent to Jesmond for a referral. One lady died during the process and became a death in service as opposed to ill health retired.

What i will say though, and it’s a mistake loads of people, their managers and ever doctors make is that the capita doctor isn’t trying to assess or seek proof you have your illness. He/she is looking for evidence that you are unfit to do the job you do permanently. For example if your chemo was every 3 weeks and you said on the IHR form that you felt fine for the two weeks between treatment, then you would be advising the capita doc that you could physically do your job in those two weeks.

I was at a conference a few years ago and there capita doctor seemed almost apologetic when he described reading statements like “so and so tries to attend work but is often sent home” or “so and so can work a few hours but because of treatment /medicine becomes tired and is off the rest of the week”. As the doctor explained these statements prove the person can attend work and referrals are then made to get further info.

It’s also common for managers to try and prove their staff are doing their best to come into work and prove their not ‘exaggerating’ their condition (remember - suitability for the job you do and not your illness) so it might be worth you while having a look what your manager has put on the form.

Having said that, the fast track cases I have seen were rare mind so fingers crossed you won’t have any problems as it’s the last thing you need.

Good luck with it mate and I hope it all gets sorted so you can see some benefit of it. Might also be worth your while taking your maximum award too as iirc benefit is awarded based on weekly/monthly income meaning a higher pension payment would have a detrimental effect. The lump sum though, provided your not a SO/G6/G7/SCS will have no impact. Deffo get proper advice on that though.

PS make sure you have signed the OHS consent form if you haven’t already. That always used to delay any application by at least a week.

What a f***ing pisser ive had to say all that to someone on here. Wishing you the very best possible mate.

On and one more thing (hope i sound like Columbo)

Make sure your manager has contacted mycsp and asked them for a ihr pension calc based on a specific leaving date. Make sure you pick a date e.g 1st August as this will let mycsp calculate your pension now. The date you give might change but that would only mean a slight amendement to a complex calculation. It usually takes mycsp 3 months to calculate someone’s pension so give them as much notice as possible if you haven’t already done so.
 
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I know this place has its moments with shit cliques, mags and WUMs but stuff like this is why you just have to keep coming back.

The SMB is an institution, a living breathing representation of life, Jim, but not as we know it.

Well done @Roger snd the mods for keeping it going through the rougher times and for taking all the abuse that inevitably comes your way.

Filter out the crap, which is quite easily done, and there’s a good solid core of humanity, passion, wackiness and good honest folk get on here.
 
Wicksy said:
To anyone reading Foggy's inspirational posts and nearing their 60th birthday you will receive a testing kit for bowel cancer - please do not bin it thinking you are feeling fine - I had no symptoms but ended up with colon cancer - that kit saved my life and could also save yours.
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I too know someone who had the 60s poo test kit, blood was found, tests were done, lumps removed. Would not have been known about if tests not done SO DO YOUR poo tests.

Lumps would likely have led to an emergency situation.
 
foggy said:
Too right! Lappy and the rest will have to wait for me to tell them to bunch up a bit. I'll be in the posh end, the only thing to stop that will be if I get the big op as that's a 3 months convalesce or if the infection catching gets too frequent. I've read my own thread back now I'm home, this 6 months/12 months to live bollocks is just for forms with a box for such things. I go week to week, chemo to chemo, scan to scan.

How long to live is not what it's about in the real world, unless it's near the end and it's time to pack. It's about the fight, the survival, the getting on as best as. Like I've said before when a few famous people popped off with heart attacks - we get to a chance to really live, hug, dwell, sort, hug, contemplate, hug, say, be and love.

They just have their lights turned out and don't even have to put the chairs on the tables. We are lucky...
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Gan on foggy, keep windmilling the
 
RokerLegend said:
Yeah if it’s fast tracked the capita doctor should be able to make decision based on the evidence provided. However I’ve seen cases in the north east region where two individuals have been fast tracked but still sent to Jesmond for a referral. One lady died during the process and became a death in service as opposed to ill health retired.

What i will say though, and it’s a mistake loads of people, their managers and ever doctors make is that the capita doctor isn’t trying to assess or seek proof you have your illness. He/she is looking for evidence that you are unfit to do the job you do permanently. For example if your chemo was every 3 weeks and you said on the IHR form that you felt fine for the two weeks between treatment, then you would be advising the capita doc that you could physically do your job in those two weeks.

I was at a conference a few years ago and there capita doctor seemed almost apologetic when he described reading statements like “so and so tries to attend work but is often sent home” or “so and so can work a few hours but because of treatment /medicine becomes tired and is off the rest of the week”. As the doctor explained these statements prove the person can attend work and referrals are then made to get further info.

It’s also common for managers to try and prove their staff are doing their best to come into work and prove their not ‘exaggerating’ their condition (remember - suitability for the job you do and not your illness) so it might be worth you while having a look what your manager has put on the form.

Having said that, the fast track cases I have seen were rare mind so fingers crossed you won’t have any problems as it’s the last thing you need.

Good luck with it mate and I hope it all gets sorted so you can see some benefit of it. Might also be worth your while taking your maximum award too as iirc benefit is awarded based on weekly/monthly income meaning a higher pension payment would have a detrimental effect. The lump sum though, provided your not a SO/G6/G7/SCS will have no impact. Deffo get proper advice on that though.

PS make sure you have signed the OHS consent form if you haven’t already. That always used to delay any application by at least a week.

What a f***ing pisser ive had to say all that to someone on here. Wishing you the very best possible mate.

On and one more thing (hope i sound like Columbo)

Make sure your manager has contacted mycsp and asked them for a ihr pension calc based on a specific leaving date. Make sure you pick a date e.g 1st August as this will let mycsp calculate your pension now. The date you give might change but that would only mean a slight amendement to a complex calculation. It usually takes mycsp 3 months to calculate someone’s pension so give them as much notice as possible if you haven’t already done so.
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That is so helpful, you have no idea how much I appreciate it. I'll get my manager trained up. I've tried to get back to work, I'm Prison Service non op manager, Band 8 the daft gets, which sits around SEO in old money I think, although EO's are band 4 so might be knocking on the door of Grade 7. I'm 27 years Classic, 3 years Alpha, which the upper tier enhances to NPA - currently 67 for me. That would be good, more to get there than the f***ing award consolation prize. And yes our pension bods are MyCSP, part Cabinet Office, part private. 3 months for a calculation, f***ing hell, wonder if I can use leave up before being placed on sick proper? That might help with the leaving date back. I think the bairn will get more for a die in service - I am matter of fact out these things, have to be.

The other thing is I will have a pay rise due from 1 April gone, of around 2k, progression to the max, a bit of inflation tagged on and will probably leave beginning of September. Last year it took them until November to backdate and pay. We follow the PSPRB who recommend for the Operational side then us mere non ops follow suit and get paid last. How would that affect the calculations? It's a decent difference.

I am definitely not allowed in prisons the days, at all, following previous OH recommendations, have been to one training centre a few times and had two infections out of the first 6 chemos, delaying one by a week, then it's tumour pain control with mere slow release morphine, nerve pills and good old paracetamol on the in between weeks, all exacerbated by the smallest of trying to get up and about.

So I've tried, failed, been declared incurable, with a bit of a precedent set by the GP with the DWP's fast-track die in 6 form.

Dunno, I have no intention of dying, I have stubborn built in, but the boxes might get ticked. Hopefully just tick boxes...

Thanks again.
 
foggy said:
That is so helpful, you have no idea how much I appreciate it. I'll get my manager trained up. I've tried to get back to work, I'm Prison Service non op manager, Band 8 the daft gets, which sits around SEO in old money I think, although EO's are band 4 so might be knocking on the door of Grade 7. I'm 27 years Classic, 3 years Alpha, which the upper tier enhances to NPA - currently 67 for me. That would be good, more to get there than the f***ing award consolation prize. And yes our pension bods are MyCSP, part Cabinet Office, part private. 3 months for a calculation, f***ing hell, wonder if I can use leave up before being placed on sick proper? That might help with the leaving date back. I think the bairn will get more for a die in service - I am matter of fact out these things, have to be.

The other thing is I will have a pay rise due from 1 April gone, of around 2k, progression to the max, a bit of inflation tagged on and will probably leave beginning of September. Last year it took them until November to backdate and pay. We follow the PSPRB who recommend for the Operational side then us mere non ops follow suit and get paid last. How would that affect the calculations? It's a decent difference.

I am definitely not allowed in prisons the days, at all, following previous OH recommendations, have been to one training centre a few times and had two infections out of the first 6 chemos, delaying one by a week, then it's tumour pain control with mere slow release morphine, nerve pills and good old paracetamol on the in between weeks, all exacerbated by the smallest of trying to get up and about.

So I've tried, failed, been declared incurable, with a bit of a precedent set by the GP with the DWP's fast-track die in 6 form.

Dunno, I have no intention of dying, I have stubborn built in, but the boxes might get ticked. Hopefully just tick boxes...

Thanks again.
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No problem Foggy

Don’t worry too much about the mycsp thing. In fast track ihr cases they will do it quicker but it does no harm in getting them to start now - they just need a date to work too.

Also with your pay/grade in mind make sure on the IHR1 form you have selected to be assessed for severe ill health retirement. Getting that means your award won’t be hammered at the higher tax rate.
 
Fully expecting you to get that 100th birthday telegram from the King or Queen still. As brave and raw and honest and real as ever. There will be plenty more trips to the shops to come.
 
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