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Pancreatic cancer and me
After alluding to it in my networking thread it's only fair I elaborate somewhat:
I started having discomfort in my stomach around the start of April which didn't go away. 2 months, a hospital stay, umpteen scans and an endoscopy later it was confirmed I've got stage 4 pancreatic cancer that has spread to my liver and lymph nodes.
I'm on a course of palliative chemotherapy in a week or two that may or may not buy me more time than the 3-12 months initially projected but I can't be cured. Currently the symptoms from the chemo are worse than the cancer, and I'm on 4 cancer side effect mitigation drugs and 7 to mitigate the chemo.
Going from "I'm fine" to "be dead inside a year" in such a short space of time has been a headscrew to put it mildly, especially as at 37 I'm still young enough to think death is forever away. Telling my wife was awful, telling my parents likewise, but nothing compared to the heartbreak of telling my 9 & 12 year old girls that Dad won't be around much longer.
Having had time to reflect I'm being as positive as I can and will be trying to squeeze in as many new memories with them as I can before my time is up. Life also gets much simpler when you know its going to be short, you stop caring about all sorts of things that once seemed important but are now trivial.
Which brings me to this place. Its been part of my life for a
few years now and its a brilliant community. Thank you all for making it so, even if I've argued with you or disagreed with you. I intend to carry on taking part in the various debates on here until I no longer can.
Make the most of life, and those you love most. You never know how long you'll have left with them.
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Re: Pancreatic cancer and me
I am so so sorry mate, I can only imagine how difficult it has been for you and having kids myself I definitely know how hard it must have been telling them.
There are not many things that can be said in times like this but if you ever need anything do let us know. Will pray the chemo gives you more time and will be thinking of you.
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Re: Pancreatic cancer and me
Thanks for posting, you're a star.
Pancreatic is one of those ones we know so little about - I was on a call only last week with some guys at Harvard Mel who are trying to apply AI to the problem.
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Re: Pancreatic cancer and me
So sorry to hear this and thanks for sharing with the community.
Enjoy whatever time you have with your family and make the most of every minute.
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Re: Pancreatic cancer and me
We’ve never met in person, & I’m not even sure we’ve ever exchanged very many messages on Hexus, but I was incredibly shocked & saddened by your post about your cancer diagnosis. Sometimes words just aren’t enough. Life really can be so cruel; I can’t begin to imagine what you & your family are going through, but you are all in my thoughts & prayers.
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Re: Pancreatic cancer and me
37 ! That simply is not fair. Words otherwise fail me.
Feel free to PM me if you need any help in here, that much at least, I *can* do.
David
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Re: Pancreatic cancer and me
Life is short and long at the same time and I guess most of us just take our health for granted, I pray that God will give you healing so you can enjoy much more time with your wife and children than has currently been forecast.
I cant tell you what to do but I know from personal experience that forgiving people in your life that have wronged you and letting that go will help you ease any burdens you have allowing you more time to concentrate on your family as that is your most important thing.
I am wishing you all the best spacein_vader and f-off to the C word.
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Re: Pancreatic cancer and me
Dear spacein_vader, I am so heartbroken to read you post, words can't fully express what and all i want to say.
I am just going to wish you a comfortable life and enjoy you precious and happy moments with you family.
Regards.
Vicar
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Re: Pancreatic cancer and me
How very sad and hard to read, I'm the same age and was diagnosed with stage 4 appendix cancer last year.
Mine having a curable outlook it's very hard to appreciate what you must be going through.
Well done for being open & honest about it and more so publicly, in a way communicating with strangers can make it that little bit easier to talk to the ones you know and love.
If you need any help or advice based on my own experiences, or just to garner some recommended shows to watch, I would be more than willing.
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Re: Pancreatic cancer and me
"Headscrew" is a good way to put it. There's not much anyone can say that'll help, especially given your age. and all I can suggest is to try to get to the point of acceptance, and to make every last minute count. And I'm sure you've already done that.
To everybody else, none of us know what's coming. Make the most of every day.
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Re: Pancreatic cancer and me
Thats a lot rubbishrubbishrubbishrubbish
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Re: Pancreatic cancer and me
Sorry to hear what has happened to both of you! :(
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Re: Pancreatic cancer and me
Really sad news.
Very well written opening post, certainly makes you think.
So young makes it all the worse.
Hard to think or say, but cherish every moment.
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Re: Pancreatic cancer and me
I'm so sorry to hear the news. I had no idea you are only 37. :(
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Re: Pancreatic cancer and me
Thanks all for your kind words. I've had a couple of months to attempt to come to terms with it. Some days I do better with that than others.
The chemo at the minute is harder, more painful and more draining than the cancer but I dread the moment that changes.
Next month I have a scan. It'll be compared to the pre chemo scan to see if it's working. In turn that will give me a better idea how long I've got.
I'd really love one last Christmas with the family so hopefully the scan will give me that long. Pancreatic is so deadly because you often don't get symptoms till its too late. I started getting an upset stomach as the first sign in April, by which point I already had a 5cm tumour and spread.
I'm trying to make the most of every day, been medically retired, my death in service, pensions and life insurance have all paid out so the house is secure for my family. Trying to make as many memories as I can.
Mentally is the toughest part, but you keep going for those you love.
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Re: Pancreatic cancer and me
If you have a gofundme or something spacein_vader, I'd love to donate. If you don't can we as a community do something for you? I'd love it if we could arrange something for you, have a think - maybe an event day we could fund or something?
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Re: Pancreatic cancer and me
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.
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Re: Pancreatic cancer and me
I don't have the words and the ones that come to mind feel clumsy :(
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Re: Pancreatic cancer and me
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
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Re: Pancreatic cancer and me
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...
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Re: Pancreatic cancer and me
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.
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Re: Pancreatic cancer and me
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.
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Re: Pancreatic cancer and me
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.
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Re: Pancreatic cancer and me
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
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Re: Pancreatic cancer and me
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*
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Re: Pancreatic cancer and me
Quote:
Originally Posted by
spacein_vader
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
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Re: Pancreatic cancer and me
Quote:
Originally Posted by
Zak33
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....
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Re: Pancreatic cancer and me
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.
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Re: Pancreatic cancer and me
Quote:
Originally Posted by
spacein_vader
.... 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.
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Re: Pancreatic cancer and me
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.
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Re: Pancreatic cancer and me
Quote:
Originally Posted by
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.
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!
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Re: Pancreatic cancer and me
Quote:
Originally Posted by
AGTDenton
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.
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Re: Pancreatic cancer and me
Quote:
Originally Posted by
spacein_vader
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.
As I mentioned, She and everyone else in your family there will be more than welcome to the family here, too!
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Re: Pancreatic cancer and me
I'm so sorry to hear this.
Thank You for being a part of the awesomeness here at HEXUS, and I hope you have as comfortable a time as possible for as long as possible for yourself and your family.
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Re: Pancreatic cancer and me
What a gut wrenching read.
Really sorry to hear about this, I know this probably won’t help but wishing you and your family all the best.
My dad passed away from liver cancer a few years ago so fully understand the impact and effects of chemo.
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Re: Pancreatic cancer and me
Operation Raise Your Glass continued yesterday. Given decent weather and a free day (as I was supposed to be bed bound after the chemo that got postponed,) we decided to take a touristy trip to Cambridge.
Visited the Fitzwilliam Museum which is highly recommend, had a guided punting trip down the river and visited the Raspberry Pi shop! Lovely place but I'd recommend waiting till the colleges open up again post covid, currently you can walk along the backs or look round the quads.
Bought a build a remote control car pi kit, complete with sensors to avoid collisions and ability to track a line of you programme it right. Was hoping one of the kids would want to make it with me. Turns out they both do, so ordering another kit and pi today. Be great to get them interested in programming it and should be lots of fun.
Kit gives you everything but the chassis. You can use the box it came in, or another box, or lego. Kids are planning to use different boxes or lego designs, decorate them etc to see whose is best. Should be great fun. Kit linked below if anyone is interested. Not bad for £20 (plus a Pi if you don't already own one.)
https://thepihut.com/products/camjam-edukit-3-robotics
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Re: Pancreatic cancer and me
Really sorry to hear this.
Never sits well with me when it's someone younger and should have far more time to enjoy all of the little things in life. Although I'm glad to hear you're surrounded by family, even though we're a part of your life, I hope you spend as much time as possible with them to enjoy the time you do have left (I mean, that should go without saying :p )
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Re: Pancreatic cancer and me
All the best with the treatment.
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Re: Pancreatic cancer and me
Being the ripe old age of 60 I have so scared of this. You have all my respect and prayers. I wouldn't wish it on anyone. Be strong and all the best.
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Re: Pancreatic cancer and me
This post coming live from A&E. Blood in my stool (who says cancer isn't glamorous?) + a low platelet count = checks for internal bleeds.
Fair to say I'm not looking forward to it and hoping the doc has small hands.
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Re: Pancreatic cancer and me
Quote:
Originally Posted by
spacein_vader
This post coming live from A&E. Blood in my stool (who says cancer isn't glamorous?) + a low platelet count = checks for internal bleeds.
Fair to say I'm not looking forward to it and hoping the doc has small hands.
Make sure he warms them, too. :eek:
Thinking of you, spacein.
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Re: Pancreatic cancer and me
Bigger than I'd have liked...
Still, nothing untoward and home by 1 which is pretty good for an A&En attendance recently.
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Re: Pancreatic cancer and me
Brings a whole new meaning to your username eh.
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Re: Pancreatic cancer and me
Quote:
Originally Posted by
[GSV]Trig
Brings a whole new meaning to your username eh.
I was sure there was a gag in there somewhere, but I couldn't quite put my finger on it, and didn't want to make him the butt of the joke.
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Re: Pancreatic cancer and me
Quote:
Originally Posted by
Saracen999
I was sure there was a gag in there somewhere, but I couldn't quite put my finger on it, and didn't want to make him the butt of the joke.
If there was a gag in there, he's gone in the wrong end...
Are we sure this guys a doctor?
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Re: Pancreatic cancer and me
:clapping: thanks both for brightening my day.
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Re: Pancreatic cancer and me
Quote:
Originally Posted by
[GSV]Trig
If there was a gag in there, he's gone in the wrong end...
Are we sure this guys a doctor?
No wonder it was a tad uncomfortable. Still, getting a freebie tonsil check at the same time is at least good value.
If he's not a doctor, he sure has a strange taste in hobbies!! But hey, the world is a strange place and I'm not judging him. ;)
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Re: Pancreatic cancer and me
Quote:
Originally Posted by
Apex
I don't have the words and the ones that come to mind feel clumsy :(
This :(
Quote:
Originally Posted by
g8ina
37 ! That simply is not fair. Words otherwise fail me.
And this; but ofc life is not in any ways fair, and never will be - we're all on the same down escalator (cheerful) and the only way to live imo is (as you say, spacein_vader) to make the most of it.
Thinking of you, for what that's remotely worth, and sending my best fellow 'Hexus fixture' fluence.
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Re: Pancreatic cancer and me
Should have mentioned before, if you're a flavoured tea drinker, I found teapigs lemon & ginger to really help with the nauseous.
I will say it's an acquired taste but when it did actually work for me I was happy to get through a cup for the temporary relief it gave.
Main reason I went for this brand is all the other big brands have a measly 2-3% of ginger, this has a generous 65%.
Other tea tips I got were Chamomile for helping with sleep and Peppermint to also help with the stomach. I didn't find these to work but the two patients I was speaking to said it helped them a lot. However, I tried different brands and didn't think at the time to check the ingredients which knowing what I know now were no doubt low on the active ingredient.
I did at least like the Chamomile one though, quite tasty
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Re: Pancreatic cancer and me
For peppermint tea, which I've grown to like, I had a cheap 'herb' plant from a supermarket, stuck it in a larger pot with compost and plonked it on a shelf. I just harvest three or four medium to large leaves, stick 'em in a cup and add boiling water. Steep for about 5 mins, job done.
To be fair, a few thin slices of root ginger and a squeeze of fresh lemon works too (as lemon and ginger, not peppermint, I mean, that'd be weird). :D
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Re: Pancreatic cancer and me
Space....
What a shocker. Your openness, calmness and humour are beyond commendable. This sort of thing really reminds all of us how much of life is spent on utter nonsense. Cherish life, fill up with and share love and joy - live.
I don't know if there are any needs that can be helped with for your family, but I'm certain the community here would be happy and desirous to help in whatever way.
For my part, I just want to say - and I don't want to cause any offense, but these are those big moments and questions in life - I want to say that there is a reason behind this universe, a point to this whole life, as little as we might grasp of it at times. Justice, love, mercy, peace, romance, all of these are part of the reality we share, and the God who is weaving it all together. I've no desire to start a debate or, as I said, cause offense. I just want to say that if you have any questions or thoughts or doubts or fears, for my part, I'm sure of these things, and that there is a God, that He plans rest for all who would choose it. His requirements are just humility, honesty and love. A resting on Him, an asking of Him to take care of it. Any fears or thoughts shared with Him are not lost or forgotten. There are none who call on Him that He will turn away.
For what it's worth, that's what I believe. I've seen it at work in many lives as well as my own, and I share it with you as the best comfort and light that I have. I've bet my life on it and so far found it trustworthy and true.
Peace be with you.
And again, if there are any needs we can meet, just say the word.
G.
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Re: Pancreatic cancer and me
Quote:
Originally Posted by
AGTDenton
Should have mentioned before, if you're a flavoured tea drinker, I found teapigs lemon & ginger to really help with the nauseous.
I will say it's an acquired taste but when it did actually work for me I was happy to get through a cup for the temporary relief it gave.
Main reason I went for this brand is all the other big brands have a measly 2-3% of ginger, this has a generous 65%.
Other tea tips I got were Chamomile for helping with sleep and Peppermint to also help with the stomach. I didn't find these to work but the two patients I was speaking to said it helped them a lot. However, I tried different brands and didn't think at the time to check the ingredients which knowing what I know now were no doubt low on the active ingredient.
I did at least like the Chamomile one though, quite tasty
Quote:
Originally Posted by
Saracen999
For peppermint tea, which I've grown to like, I had a cheap 'herb' plant from a supermarket, stuck it in a larger pot with compost and plonked it on a shelf. I just harvest three or four medium to large leaves, stick 'em in a cup and add boiling water. Steep for about 5 mins, job done.
To be fair, a few thin slices of root ginger and a squeeze of fresh lemon works too (as lemon and ginger, not peppermint, I mean, that'd be weird). :D
Thanks both, always been in to peppermint and chamomile teas (not together, yuk!) and they have been helping. Tried the ginger thing last time to help nausea
Suffice to say it didn't work and ginger coming backwards doesn't half Sting which has put me off it somewhat.
Quote:
Originally Posted by
Galant
Space....
What a shocker. Your openness, calmness and humour are beyond commendable. This sort of thing really reminds all of us how much of life is spent on utter nonsense. Cherish life, fill up with and share love and joy - live...
Thanks for your post. I've never been religious, I just can't believe in something intangible, I do often envy those who can though. My current position is I still don't think there's anything after death, just now I hope I'm wrong!
After more blood tests yesterday the Bittersweet news is I'm having chemo at 10:30 today. Treatment back on track but another 4 days+ of nausea, sweats, shaking, constant tiredness and feeling of being drugged up. I really do hope the scans show this was all worthwhile.
Guess I'll see you all in 4 days or so. Hope I don't miss anything exciting in the tech world.
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Re: Pancreatic cancer and me
Quote:
Originally Posted by
Galant
For my part, I just want to say - and I don't want to cause any offense, but these are those big moments and questions in life - I want to say that there is a reason behind this universe, a point to this whole life, as little as we might grasp of it at times. Justice, love, mercy, peace, romance, all of these are part of the reality we share, and the God who is weaving it all together. I've no desire to start a debate or, as I said, cause offense. I just want to say that if you have any questions or thoughts or doubts or fears, for my part, I'm sure of these things, and that there is a God, that He plans rest for all who would choose it. His requirements are just humility, honesty and love. A resting on Him, an asking of Him to take care of it. Any fears or thoughts shared with Him are not lost or forgotten. There are none who call on Him that He will turn away.
Tip: If you really don't want to cause offence a better way or wording it would be:
For my part, I just want to say - and I don't want to cause any offense, but these are those big moments and questions in life - as a religious person, I would be happy to discuss anything spiritual with you.
Cut the rest out. It's attempted forcing of religion upon another. Whether you mean it that way or not. :)
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Re: Pancreatic cancer and me
Quote:
Originally Posted by
spacein_vader
After more blood tests yesterday the Bittersweet news is I'm having chemo at 10:30 today.
All the v. best :thumbsup:
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Re: Pancreatic cancer and me
Forgot to say earlier, Im in Northampton, just down the A43, so if you need anything that I can help with, just shout.
Hope the chemo isnt too brutal :(
David
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Re: Pancreatic cancer and me
Well so much for that. Every time I go for chemo there's a very thorough examination first. Now I know why. They found a 3cm ish cyst on my back, I'd known it was there as I get them occasionally so mentioned it in passing.
Straight away the nurse called the consultant down. Apparently I'm very lucky it hadn't become infected already, but if they'd given me chemo as planned the likelihood it would be was over 90%, which would mean days in hospital and in the worst case sepsis.
Instead they called my GP, told him in no uncertain terms he needs to examine me and proscribe the relevant antibiotics today and then gave me a course of self administered injections (eek) to boost my immune system. I'll then be reassessed next Tuesday and if the cyst has gone down enough have chemo next Wednesday.
While frustrating it's served as a timely reminder of how fragile my body is and how thorough, caring and supportive the chemotherapy team are.
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Re: Pancreatic cancer and me
Quote:
Originally Posted by
spacein_vader
Well so much for that. Every time I go for chemo there's a very thorough examination first. Now I know why. They found a 3cm ish cyst on my back, I'd known it was there as I get them occasionally so mentioned it in passing.
Straight away the nurse called the consultant down. Apparently I'm very lucky it hadn't become infected already, but if they'd given me chemo as planned the likelihood it would be was over 90%, which would mean days in hospital and in the worst case sepsis.
Good to hear they're on the ball. Interesting, I didn't get an examination prior, but every time I went to give bloods they asked a series of questions.
Quote:
Originally Posted by
spacein_vader
Instead they called my GP, told him in no uncertain terms he needs to examine me and proscribe the relevant antibiotics today and then gave me a course of self administered injections (eek) to boost my immune system. I'll then be reassessed next Tuesday and if the cyst has gone down enough have chemo next Wednesday.
Ah yes the old Filgrastin? You can ask for a referral to your district nurse if you're not so keen doing it yourself.
I had to in the end because the nerve damage to my fingers meant I couldn't accurately feel what I was doing.
Quote:
Originally Posted by
spacein_vader
While frustrating it's served as a timely reminder of how fragile my body is and how thorough, caring and supportive the chemotherapy team are.
Glad to know you're under a good team.
Yes definitely keep in mind how fragile your body now is. Even though I finished my treatment at the end of July, any little paper cut or knock still takes weeks to heal, I've yet to leave the house to avoid any bad luck. Once I get the results of my next scan & bloods I'll decide whether to go out.
Good luck with your next scan/results. Although mine was in a different area but on the same chemo, I did have a lot of shrinkage prior to an op to remove it. So fingers X you get some shrinkage.
My scan was cancelled on Sunday because of the fuel madness, they had to reserve the day for high priority only.
Quote:
Originally Posted by
spacein_vader
Thanks both, always been in to peppermint and chamomile teas (not together, yuk!) and they have been helping. Tried the ginger thing last time to help nausea
Suffice to say it didn't work and ginger coming backwards doesn't half Sting which has put me off it somewhat.
Fully understand, the burn in the throat is very off putting. I'm still suffering with acid reflux 2 months after I finished.
Good to hear the chamomile and peppermint are helping.
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Re: Pancreatic cancer and me
Hey Space,
Did you manage to get the doc appointment sorted and antibiotics? I can't imagine having to self-administer injections....
Everything look set for Tuesday re-exam?
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Re: Pancreatic cancer and me
Yes, been on antibiotics since Thursday evening, my wife handled the injections, no way I could do them myself.
The combo of the two has floored me though, I'm sleeping 18 hours a day and it's brought on nausea which has killed my appetite.
That said the cyst is calming down and we're looking OK for Tuesday. Main issue for the doc is thst this isikely to reoccur unless removed, but I suspect removing it in my condition is an inpatient procedure.
Have to wait and see.
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Re: Pancreatic cancer and me
Spacein-vader, i have no words, This was so hard to read as it was 6 years ago I lost my sister at only 29 years old to terminal cancer. The chemo didn't work well and it was hard to be on the side-line but enough of that! Godspeed! I really hope you get lots of new memories your family can cherish and I love you outlook on it all! I'm sure your children and wife are cherishing every moment with you right now which can only lift spirits.
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Re: Pancreatic cancer and me
Quote:
Originally Posted by
razer121
Spacein-vader, i have no words, This was so hard to read as it was 6 years ago I lost my sister at only 29 years old to terminal cancer. ....
That sucks pretty badly too.
I don't want this to divert from this thread being about spacein, but it's worth everybody bearing in mind that cancer strikes all ages. Yeah, sure, the older you are the greater the risk, but similar to razer, I lost my sister-in-law (and, clearly, my brother lost his wife) when she was the ripe old age of about 22. And heah, this was 50-odd years ago and treatments were nowhere near as good then as they are now, and there's still a long way to go now.
My point?
Just this .... everybody, all ages, needs to be aware that this calamity is an equal opportunity disaster and pays no notice to age, race, religion, gender, sexual inclination .... none of the usual characteristics we use to pretend we're different from 'them'. If anything loads the odds, it's wealth and at least in this country we have an NHS that treats us all whether we can afford it or not because without that, most of us can't, or not for very long.
Because it is an equal opportunity calamity, and because it often first shows in strange and often apparently trivial ways, if you get a persistent strange problem, get it checked out. I'm not suggesting you go straight to the GP every time you get the slightest twinge, because that's daft and they're over-loaded already, but a persistent (over time) issue might be much more serious than it implies and can show up in apparently unrelated ways and places.
Don't panic, and don't assume every twinge is cancer, but almost all forms of cancer are treatable if caught early. Just bear it in mind.
Sadly, some also show little or nothing in the way of even apparently unrelated warning signs, so if a screening opportunity comes up, don't just dismiss it.
I've lost both my mother and sister-in-law, and another family member still going through it, by not catching on quickly enough. Don't make the mistakes we did.
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Re: Pancreatic cancer and me
Better news from the oncologist yesterday. My cyst has settled down so will be having chemo today (so I probably won't be able to post again till the weekend,) while my tumour blood marker has dropped from 1900ish to 1300ish. This is a positive sign that the chemo is impacting on the tumour.
My CT scan has been booked in for week commencing 25/10 so the following week I'll know how well the chemo is working and if I'm likely to make Christmas. Doc seems confident it's possible though.
Most positive news I've had in one go for a very long time.
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Re: Pancreatic cancer and me
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Re: Pancreatic cancer and me
Good Luck, great to see you in high (ish) spirits after all this carp....
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Re: Pancreatic cancer and me
Just want to post and say still thinking of you spacein_vader. (Hoping no news is a good sign you are off enjoying yourself - posting here should never be a priority for you - but don't want you to feel forgotten for even a minute...)
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Re: Pancreatic cancer and me
Thanks all for your kind messages. I've just spent the weekend with the family at centerparcs, in what is almost certainly my last holiday with them.
For 3 days, I was (most of the time,) me again. I did archery, laser combat and boating with them. The kids eagerly told me stories of how amazing it was seeing a sunset in the outside pool (I can't go in the water due to the line I have in for chemo,) and how amazing it was with the pools lit up after dark.
I paid for it yesterday morning when my body reminded me I'd outdone its current limitations but it was worth it. Memories I and hopefully they will treasure for the rest of our lives.
The best part was last night my Eldest finally opened up to me about how she's feeling about my illness and its end result. It was a hard conversation for us both but brought us closer and I couldn't be more proud of how resilient she's being. I just wish she didn't have to be.
Today I'm practically bedbound recovering, and I have chemo again on Wednesday. But it was worth it.
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Re: Pancreatic cancer and me
Quote:
Originally Posted by
spacein_vader
Thanks all for your kind messages. I've just spent the weekend with the family at centerparcs, in what is almost certainly my last holiday with them.
For 3 days, I was (most of the time,) me again. I did archery, laser combat and boating with them. The kids eagerly told me stories of how amazing it was seeing a sunset in the outside pool (I can't go in the water due to the line I have in for chemo,) and how amazing it was with the pools lit up after dark.
I paid for it yesterday morning when my body reminded me I'd outdone its current limitations but it was worth it. Memories I and hopefully they will treasure for the rest of our lives.
The best part was last night my Eldest finally opened up to me about how she's feeling about my illness and its end result. It was a hard conversation for us both but brought us closer and I couldn't be more proud of how resilient she's being. I just wish she didn't have to be.
Today I'm practically bedbound recovering, and I have chemo again on Wednesday. But it was worth it.
Glad to hear you're managing to make the best of the awful situation you're in. Hoping for many more good days.
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Re: Pancreatic cancer and me
6 chemotherapy treatments completed with the final one last week. Had a CT scan yesterday. They'll compare it to the one I had before treatment started in July then on Tuesday the oncologist will be able to tell me how successful or otherwise the chemo has been in managing the tumour and crucially, a better idea of how long I have left.
Feel free to cross your fingers for me!
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Re: Pancreatic cancer and me
fingers and legs crossed.
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Re: Pancreatic cancer and me
I'm crossing everything for you mate. I hope you get positive news.
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Re: Pancreatic cancer and me
They're crossed for you :)
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Re: Pancreatic cancer and me
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Re: Pancreatic cancer and me
Definitely crossed for you :thumbsup:
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Re: Pancreatic cancer and me
So crossed, I think I've formed them into some sort of fisherman's knot :)
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Re: Pancreatic cancer and me
Fingers, legs, eyes, testicles. All crossed my good sir.
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Re: Pancreatic cancer and me
Fingers crossed here too.
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Re: Pancreatic cancer and me
Yup, likewise. I have pretzel'd myself, appropriately. Now I just have to work out how to have lunch while pretzel'd.
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Re: Pancreatic cancer and me
I'm not going to tell you I have crossed things, because I haven't, however, I will extend the hope that you and whatever you believe in gives you the strength to be everything you can be, and need to be for your family in the coming years.
And I say years intentionally, with a smidge of hope.
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Re: Pancreatic cancer and me
Quote:
Originally Posted by
Saracen999
Yup, likewise. I have pretzel'd myself, appropriately.
Won't that also make it impossible to pee.....?
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Re: Pancreatic cancer and me
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Re: Pancreatic cancer and me
The last 24 hours have been very rocky. Came to A&E at 10 last night (Halloween is a bad time to be in ED,) as my temp hit 39.8. A course of antibiotics to fight off an infection later I was sent home at 4am.
At 10am they called. They've spotted a pulmonary embolism (blood clot) on my lung, can I come back in. Still waiting for treatment on that but shouldn't be admitted.
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Re: Pancreatic cancer and me
Quote:
Originally Posted by
spacein_vader
The last 24 hours have been very rocky. Came to A&E at 10 last night (Halloween is a bad time to be in ED,) as my temp hit 39.8. A course of antibiotics to fight off an infection later I was sent home at 4am.
At 10am they called. They've spotted a pulmonary embolism (blood clot) on my lung, can I come back in. Still waiting for treatment on that but shouldn't be admitted.
Blooming heck :o
How are you coping mentally with it all?
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Re: Pancreatic cancer and me
Quote:
Originally Posted by
MrRockliffe
Blooming heck :o
How are you coping mentally with it all?
Not well, just rolling with the punches. I can see what people mean when they say they get tired of fighting (I'm not there yet) as days like this are exhausting.
The treatment for the clot is 28 daily injections that I have to do myself into my stomach. It's about as fun as it sounds.
Really could do with positive news today.
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Re: Pancreatic cancer and me
Everyone here will be thinking of you & the HEXUS virtual kettle is on, all the v best for today :)
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Re: Pancreatic cancer and me
I really hope you have better few days. Thinking of you.
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Re: Pancreatic cancer and me
Quote:
Originally Posted by
spacein_vader
Not well, just rolling with the punches. I can see what people mean when they say they get tired of fighting (I'm not there yet) as days like this are exhausting.
The treatment for the clot is 28 daily injections that I have to do myself into my stomach. It's about as fun as it sounds.
Really could do with positive news today.
I can’t even begin to imagine what it’s like :(
But it sounds like you’re fighting hard, even if it doesn’t feel like you are at times.
We’re all rooting for you, and we’re all here for you :hexlub:
My contact details are in my signature - reach out whenever :-)
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Re: Pancreatic cancer and me
Quote:
Originally Posted by
spacein_vader
Not well, just rolling with the punches. I can see what people mean when they say they get tired of fighting (I'm not there yet) as days like this are exhausting.
The treatment for the clot is 28 daily injections that I have to do myself into my stomach. It's about as fun as it sounds.
Really could do with positive news today.
On that last point, I don't think I'm being presumtuous when I say everyone here is hoping for exactly that, too.
As for the injections, well, I'll just quote what my wife said, which was "Oh, for pities sake, how much more does that poor guy have to cope with?"
That about nails it.
Best wishds for the meeting, spacein.
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Re: Pancreatic cancer and me
Well we are here when you want to chat. Get well soon and wouldn't wish that on anyone but you sound strong minded. Fingers crossed bud
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Re: Pancreatic cancer and me
Mate I am so sorry to hear this, thinking of you all. :(
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Re: Pancreatic cancer and me
What a rough couple of days, everything crossed for todays results!
Just saw the Centreparcs trip, so glad to read you were able to give it your all
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Re: Pancreatic cancer and me
Results were that the tumour has neither grown nor shrunk. Based on that the average person in my position lives around 6 months from this point.
About the best news I could have hoped for. At least I get Christmas.
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Re: Pancreatic cancer and me
As always, I'm not sure what to say. Because nothing I can say actually helps. But I am really delighted that you will get to spend Christmas with your family.
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Re: Pancreatic cancer and me
Me too, enjoy Christmas and make it the best one ever!
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Re: Pancreatic cancer and me
That's good news spacein_vader, with a bit of luck you might also see spring as well. Thinking of you, you have my WhatsApp, just message if you need too.
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Re: Pancreatic cancer and me
Silver linings :) Have a great one. I guess the care is setup to ensure people are at there best to enjoy Christmas at home.
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Re: Pancreatic cancer and me
Quote:
Originally Posted by
spacein_vader
Results were that the tumour has neither grown nor shrunk. Based on that the average person in my position lives around 6 months from this point.
About the best news I could have hoped for. At least I get Christmas.
From my experience, that is actually pretty good. Yeah, shrinkage would certainly be good, but "stable" is still a result. It may not be a gold medal, but it's a solid silver, and clipped the gold.
Bear in mind, averages are just that, and part of how averages are varied is strength of will. My father was, essentially, given a month to six weeks, and we finally lost him just over 5 YEARS later. I'm not saying to expect 5 years, just that those averages can cover a wide range of results, and stable is, well, stable.
Prepare for the worst by all means, but then, strive for the best. Carpe diem, spacein.
And I am very pleased to hear that outcome.
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Re: Pancreatic cancer and me
I don't think I can add anything on top of what Saracen has just said but pleased its no news. Long may that continue.
Survival estimates are a real problem with cancer. A friends father is just about coming to the end after 5 years battling having originally been told he had months. On the other side of the coin a friends 15 year old passed away recently due to childhood leukemia after just a year even though he was told he should survive it initially (that one hit me hard and I couldn't even visit the funeral the other day as we have COVID currently). Horrible horrible disease (not that any are pleasant). I hope/pray they are underestimating in your case spacein_vader.
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Re: Pancreatic cancer and me
Quote:
Originally Posted by
spacein_vader
Results were that the tumour has neither grown nor shrunk. Based on that the average person in my position lives around 6 months from this point.
About the best news I could have hoped for. At least I get Christmas.
Any plans for Christmas/December?
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Re: Pancreatic cancer and me
Quote:
Originally Posted by
Galant
Any plans for Christmas/December?
Yes. Got the family and close friends all booked in to visit at various points between Christmas & New Year. Aim is to make it a big Christmas, a celebration of friends and family being together one last time. Planning on going to a place I love on the coast with my wife and parents in the new year too. Just hoping I make the end of January booking date!
My wife is thinking of changing how Christmas is done by us from next year. Her thinking is that pretending things are the same when they've changed helps nobody. They can make new traditions. I like that idea.
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Re: Pancreatic cancer and me
Maybe you can record messages for your daughter(s), for them to watch on future birthdays/christmas etc. I know it's something I would do, so you could reflect on their future lives and somehow still be part of it?