Pancreatic cancer and me

[TAKTAK]

I've typed things out and deleted them over and over.
Truthfully, I have no words. The ones that keep coming up are expletive.

I can't even begin to imagine the mental gymnastics that you've been through and are still experiencing.

Really sorry to hear the news, but thank you ever so much for sharing.

[Apex]

I don't have the words and the ones that come to mind feel clumsy

[Zak33]

brace yourself lad..... brace yaself....

/Zak mode fully ON


When we lost peterb, it was a kick in the nad's hard enough to feel thorugh the internet. It wasn't sudden but it felt it... Don't want that again tbh.

So.... with you we have time to chat it through with you, so everyone here... you and them and I... are ready, to what ever extent we can be ready, to deal with a gap.

You're kinda part of the furniture here.... and whille only 37 you're one of the old school. So...please.... you need to balance having all that family time- which is key..... with occassionally dropping in here and telling us whats going on and how you feel

please keep us with you in your head as we will keep you in ours through this , frankly, rubbishrubbishrubbishrubbishty paper round you've been handed.

Love you man

[cheesemp]

I've just turned 40 and have kids a similar age. I can't begin to imagine what you are going through. Cancer is such a awful disease. Go make memories with your love ones as best you can - remember kids don't really remember big trips to disney land, more that parents having time to talk and more importantly listen and play if you're worried Covid is stopping you doing big things. Little things often matter more. What more can I say that hasn't already been said...

[Saracen999]

This copmes at you not only as like a punch in the gut from a world champion heavyweight boxer, or kicked by a horse but also as a tidal wave in breadth and depth in the implications. I'm at least glad to hear of the retirement/house/insurance thing. That will at least take a lot of pressure off the wife and give her more time to spend with the kids. But even so, I can't comprehend that news at that age. It's bad enough when you're much older.

I suppose you did at least get some warning. One of my wife's school (female) friends woke up one morning to find her husband, of a similar age, had had a large brain aneurysm in the night. Went to bed apparently fit and healthy, and never woke up. Four young kids, one of which was a baby. It's a good job she was strong, for the kid's sake. That would have destroyed me, I think. It's not much but at least you get some chance to plan and prepare. It's still a right bitch, though.

As for getting your head on straight, I doubt it's possible to not have bad days. It may even be a useful pressure valve. But I think keeping positive overall matters, and if you falter, think about the kids. As you no doubt do.

I'm not religious but even I will drop a few prayers for those scan results, just in case.

[jimbouk]

Hard to write anything in response but thank you. In glad that financially everything will be secure for the family going forward. Keep living and loving as long as you can.

[spacein_vader]

All those words of kindness you've felt difficult to write I can assure you are just as difficult to read. I'm extremely grateful to you all.

Someone mentioned GoFundMe or similar. It'd be churlish of me to do anything on a personal level, as I mentioned financially we're well looked after. that said I don't have anything set up (maybe I should, when I find time,) but you could donate to Pancreatic Cancer UK who we're trying to support. There's the more generic cancer research Sober October coming up too, but (understandably,) the bulk of their funding goes towards cancers close to breakthroughs so pancreatic is quite low down their list.

Part of the reason pancreatic is so deadly is you don't get symptoms till its very advanced. I had none at all till April, when it was 5cm and spreading to my liver. I've been consistently told by the medics working on me that I'm one of the youngest pancreatic patients they've ever seen (most are 60+) and comfortably the youngest to have no family history of cancer. I'm am having genetic tests to look for some genes that may make me more vulnerable. It won't help me but if they're there my children will qualify for regular screening so it could help them avoid this terrible disease.

Zak, while I've been on here a while I didn't think I posted often enough to be part of the furniture. I'm happy to share as I go, it may be uncomfortable reading though. It may also end abruptly, but I'll try and get Mrs Vader to make a final post if she's up to it when the time comes. I didn't know Peterb well, my ladt interaction was a PM from him tentatively sounding me out about becoming a mod. I replied and never heard back which I thought was odd. When it was announced it did come as a shock.

Yesterday was a big day. I had my first Phycologist appointment. The lady I saw specialises in cancer patients and particularly terminal ones. As you'd probably guess your mind goes to all sorts of places when you get this kind of news. The thing I dread the most currently is my fortnightly chemo. The daub before the chemo because my cancer pain is so well managed I feel totally normal. I can eat what I like, go out, enjoy life.

Then chemo hits like a hammer blow, the universe reminding me in style I have a terminal illness. For 4-6 days after chemo I barely get out of bed, the first 3 days are constant nausea, trying to keep basic foods down and sleeping 18 hours a day. I get extremely sensitive to cold, even it August which is a known side affect. No refrigerated food or drink unless its warmed up first. Not had ice cream since June.

The concept of voluntarily doing that knowing that while it may buy me a bit of time it WON'T save me is more difficult every time. I was also meant to have my 5th chemo session yesterday but the docs rang and said my bloods showed too low a platelet count so they're going to wait a week. My emotional reaction to delaying life prolonging treatment was relief. That's not normal. Talked about it with her and we've got a session next week to come up with some coping techniques.

My best case is I die of failure of the pancreas alone. If I'm unlucky it'll be multiple organ failure as it gets my liver and maybe kidneys too. I need the chemo for that not to happen. Just shows there are no good answers in my situation, some are just marginally less rubbishrubbishrubbishrubbish than others.

I'm the meantime we're filling the days I have with as much as we can. This week's lack of chemo means we're going to go to Cambridge on Friday. Never done it has a tourist so a punt on the river, explore some of the prettier buildings and a trip to the Raspberry Pi shop are all on the agenda! My wife has called this push to do things Operation Raise Your Glass. Despite being unable to drink any more, I quite like that.

It does make you focus on what's important. In my case that's family and friends but also the core values that define us. For me thats openness and integrity. I've alluded to it before but until I was recently medically retired I was a Data Protection Officer by trade, most recently for Kettering General Hospital. A key part of that role is standing up for what's right for patients/staff to directors and other senior staff. I've had many uncomfortable conversations and emails with them doing that very thing but will always do what's right over what's easy. If you live in Northants and have to access either hospital or have had a jab at one of the county vaccination services you can be assured your data is safe as it can be. We even faced down NHS England & the Dept of Health on something they wanted to do with vax data.

I intend to keep that honesty and integrity till the end, partially through posting on this thread. I hope someone finds it useful. Life is fleeting, make the most of it. And for God's sake if you've got a symptom thats been nagging at you for a week or two go and see the doc, it may be nothing but it may save your life.

[Rob_B]

All I can say is that my thoughts go to you and your family.

Regarding the 'get checked' message, it's a really important one, especially in these times when getting GP appointments is a nightmare and we've had to fight past the GP receptionists trying to get you to go away and leave them alone.
I know someone working in the health/data area and apparently cancer numbers have dropped recently, however the reason is likely because people aren't getting checked out any more for those unexplained aches/pains....

This is all rubbishrubbishrubbish

[cptwhite_uk]

I'm very busy at work this week, but when I get a chance I am going to have a go at setting up a gofundme, hopefully tonight. I hope as a community we can do something for you, just to raise a smile or provide some happy memories for you and your family in the time you have left. I'll start a seperate thread if that's okay with details once it is done (just so it doesn't get lost in this post).

*ZAK EDIT - APPROVED AGREED*

[Zak33]

It may also end abruptly, but I'll try and get Mrs Vader to make a final post if she's up to it when the time comes.........
.....


I intend to keep that honesty and integrity till the end, partially through posting on this thread. I hope someone finds it useful. Life is fleeting, make the most of it. And for God's sake if you've got a symptom thats been nagging at you for a week or two go and see the doc, it may be nothing but it may save your life.

Part one - dont you DARE do that to her. She doesnt know us, nor should she care. IF she finds it helpful ONE day, then maybe she can message us . But I do not want her needing to do that. Unless it helps HER, and only IF. You can be ... an enigma here

Part two - never a truer line of text

[spacein_vader]

Part one - dont you DARE do that to her. She doesnt know us, nor should she care. IF she finds it helpful ONE day, then maybe she can message us . But I do not want her needing to do that. Unless it helps HER, and only IF. You can be ... an enigma here

Part two - never a truer line of text

She reads this thread and is happy to do it. Sharing is one of her coping mechanisms and she's enjoying seeing the sides of my life and the people I know online. I'd never make her do it if she didn't want to. In any case I don't think I could!

I'll try to make sure she doesn't have to for a fair while yet though....

[neonplanet40]

I honestly don't know what to say as words (despite being an English teacher) sometimes fail to be meaningful enough to convey feelings. Especially when you don't know the person personally.

But, I am so sorry to hear about this and I really wish you and your family all the very best in what is an awful situation. I think you're very brave for posting about it on here. That alone could help so many others in the future and provide comfort, support and/or courage when they need it most.

It puts life into perspective for others.

[Saracen999]

.... And for God's sake if you've got a symptom thats been nagging at you for a week or two go and see the doc, it may be nothing but it may save your life.

I would utterly endorse that. Unless people have had a personal or family encounter with cancer, they probably don't realise that the overt signs can be very strange and apparently entirely unrelated. It's nearly impossible to predict. That strange pain in the pinky on your left hand, the persistant boil-like lump on the bonce, and/or the muscular problem with your shoulder .... could be a sign of a cancer in, say, the kidney.

That is NOT to suggest running to the GP suspecting cancer every time you get a twinge, but unfortunately, pancreatic is not the only one where there may be no obvious signs and no pain at all until it's too late.

So, don't panic but don't ignore persistent problems that either last too long (however long that is) or keep coming and going, persistently over time. And if you get offered screening, or otherwise qualify, FFS do it.


As for the chemo balance, spacein, that's tricky. I think it varies person to person, and no doubt varies cancer to cancer. Yours sounds pretty aggressive, but not all chemo is that bad and anyone suspecting they may have an issue needs to know that, too. There are some that are very new, very highly targetted and while still not nice, not anywhere near that aggressive.

Ultimately, there's a balance between quantity of life and quality of life. I hope it doesn't sound insensitive, and isn't meant to be, but only the patient knows quite what they can cope with, and it's a judgement call for you and the family if they'd rather have you for a bit less time, but you're actually 'there' for it, or for a few weeks/months more, but zonked out on either chemo, anti-nausea drugs and morphine.

If this sounds like personal experience, it is. It's never easy, and it's very much an individual call. I had this with my mother, and she opted for chemo that, first, pretty much laid her out, and secondly, didn't work anyway. I've wondered ever since (30 years now) if when she asked "Should I take it" my response, to give it a try, was a serious mistake. I really didn't want to lose her, but my answer should have been "Whatever you think is right, I'll support it". I still, all these years later, wonder if she would have tried it if us kids had said that.

I don't think anyone can advise you on quality v quantity, but I do know if I find myself in that situation, I will listen carefully to family and especially the wife, but if anything is ever ultimately my call to make it is that, and I'll make sure the wife knows it's my decision, ultimately, whatever I end up doing, and whatever the results are.

[spacein_vader]

Chemo balance has been the hardest thing. My first treatment ( FOLFIRINOX for those interested,) I suffered a very strong allergic reaction to the Irinotecan element which hospitalised me for over a week. I strongly considered stopping it altogether. Doc said they'd remove the part I reacted to so I gave it another go.

Second go was better but I spent 3 days in bed vomiting and wasn't right for over a week. Still unconvinced I had a very long chat with the oncologist where he explained my 3 options, none of which are pleasant.

1. Stay on the current chemo regime. The side affects are awful but it's the most likely to slow the cancer and crucially, keep it from properly spreading and forming rumours on other organs.

2. Go onto weaker chemo, which may or may not have better side affects but will have less impact on the cancer.

3. Stop all chemo. No side affects but instead of a death manageable at home of pancreas failure it'd spread so I'd be looking at a painful, drug addled death of multiple organ failure likely in a hospital or hospice.

That's why I'm still on option 1. It's the least bad plan.

[AGTDenton]

Chemo balance has been the hardest thing. My first treatment ( FOLFIRINOX for those interested,) I suffered a very strong allergic reaction to the Irinotecan element which hospitalised me for over a week. I strongly considered stopping it altogether. Doc said they'd remove the part I reacted to so I gave it another go.

Second go was better but I spent 3 days in bed vomiting and wasn't right for over a week. Still unconvinced I had a very long chat with the oncologist where he explained my 3 options, none of which are pleasant.

1. Stay on the current chemo regime. The side affects are awful but it's the most likely to slow the cancer and crucially, keep it from properly spreading and forming rumours on other organs.

2. Go onto weaker chemo, which may or may not have better side affects but will have less impact on the cancer.

3. Stop all chemo. No side affects but instead of a death manageable at home of pancreas failure it'd spread so I'd be looking at a painful, drug addled death of multiple organ failure likely in a hospital or hospice.

That's why I'm still on option 1. It's the least bad plan.

Sorry to hear you had a reaction, I feel your struggle, I had 12 sessions of chemo on the same treatment. The nurses were good enough to tweak my anti nauseous drugs each time and try new concoctions, however, by the time I'd finished they never found a mix that fully worked, but they were proactive and did what they could.
I didn't start to feel nauseous until about the 4th/5th session. But it hit hard and had a number of vomiting sessions.
It's possible that you will end up on a weaker chemo dosage anyway, I dropped to 80% on some things over time and by session 11 & 12, I had to drop to 50% because it was affecting my liver. I was also supposed to be on a two week cycle, but by session 3 my white blood cells were never high enough to be on the 2 week cycle, so I ended up on a 3 week cycle.

I don't know if this will help you, but I found watching this video to be useful, Youtuber Totalbiscuit had a similar treatment to mine, and I suspect yours based on what you've mentioned.
I just found it made things a little easier knowing that what I was on is widely used and put a human emotion element to it that I don't think can be conveyed even by doctors.

Total Biscuit explains his treatment:
https://www.youtube.com/watch?v=Ozb2r7c0hxA

Sending as much strength as I can!

[spacein_vader]

Sorry to hear you had a reaction, I feel your struggle, I had 12 sessions of chemo on the same treatment. The nurses were good enough to tweak my anti nauseous drugs each time and try new concoctions, however, by the time I'd finished they never found a mix that fully worked, but they were proactive and did what they could.
I didn't start to feel nauseous until about the 4th/5th session. But it hit hard and had a number of vomiting sessions.
It's possible that you will end up on a weaker chemo dosage anyway, I dropped to 80% on some things over time and by session 11 & 12, I had to drop to 50% because it was affecting my liver. I was also supposed to be on a two week cycle, but by session 3 my white blood cells were never high enough to be on the 2 week cycle, so I ended up on a 3 week cycle.

I don't know if this will help you, but I found watching this video to be useful, Youtuber Totalbiscuit had a similar treatment to mine, and I suspect yours based on what you've mentioned.
I just found it made things a little easier knowing that what I was on is widely used and put a human emotion element to it that I don't think can be conveyed even by doctors.

Total Biscuit explains his treatment:
https://www.youtube.com/watch?v=Ozb2r7c0hxA

Sending as much strength as I can!

Thanks I'll take a look. I should have had session 5 on Wednesday but my platelet count hasn't recovered so it's postponed at least a week. I'll also be dropping to 80% doseage.

They've tried lots of different anti sickness combos on me with limited success too.