Forums
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Forums
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- 339
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- PCUK WhatsApp and Facebook Groups
- By Support Team,
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- 4.8k
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- Post-chemotherapy neuropathy - how long?
- By Luke1971,
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- 12.5k
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- CA ANTIGEN 19-9 raised level
- By Lcb2024,
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- 1.8k
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- Chemo break
- By antboo-23,
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- 6.2k
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- Peritoneal metastasis adter whipple advice
- By jessie18x,
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- 2.3k
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- Can't get away from the Concern.
- By Janecav,
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- 858
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- Is there any hope?
- By Skippy,
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Recent Posts
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By Skippy · Posted
I can understand your anger. It is so very distressing. I've been in your situation. (Twice). 3 yrs ago I'd never even heard of PC. I've thoughts that Dr's give out just so much info in accordance what 'they think' a Patient can deal with, at the time; giving the patient some 'hope'. We too had the swift nhs conveyor belt, a Whipple op; a long recovery back to up to fighting weight, then necessary follow up chemo to mop up any stray cells. Pre op the day before he turned jaundiced, so speed was essential. He needed that 'hope' to get through it all. I've read that many can manage living with it 3/4/5 lucky years. but your right, it's vicious. I do think back now all it gave was extra precious time but that hope was so necessary. Without the treatment I don't think he would have survived as long as he did. He never regretted the opportunity of the whipple operation. We hope for better studies in this area. I am thinking of you. On reading all sorts - blood tests can give 'false positive readings' / lesions can be benign tumours give false readings. Sadly our Sciences haven't mastered much. -
By Jj24 · Posted
So sorry you are going through this. I lost my husband in June and we were never given any hope but he had hope almost to the very end. It is such a brutal, fast moving and stealthy disease. We thought he was doing OK until 2 weeks before he died but things moved really quickly at the end. He died 6 months after confirmed diagnoss, 8 months after suspected PC. I hope you have lots more time with your husband, make the most of every day together. Sending you lots of strength for the times ahead. -
By Me Mouse · Posted
We’ve been on this crazy journey for 18 months. My husband was lucky, PDAC in tail, caught early enough for curative surgery. He did surgery. He was in the 20%. He did 12 rounds of highest Folfirinox cocktail. Consultant said, all gone. Yes, we believed that. Pain never went away. Scans were inconclusive and dismissed as ‘muck’ from surgery. We’ve had 2 months of ‘pain free’. He was never pain free. And after 6 scans being told its ‘muck’, no one (but me) believing the pain, watching the weight drop off, not able to eat, vomiting, he reached crisis. We knew it was back. Weeks before Consultant reacted Only a v stern call from a v caring Consultant convinced him to go to hospital Yeah it’s back. And it’s nasty. No cure. No idea how long we have him for. So there is no hope right now for PC. None at all. It’s a death sentence. My beautiful, amazing husband was told he’d beaten this crappy disease. But that wasn’t true. And yes, I hate that he was given false hope. He has reached out to our MP, he wants to get funding increased to fund a screening research program. Early diagnosis at ‘in situ’ stage is key. No one should go through this. PC is a killer and will remain so unless early detection is routine for me, I was relieved that he was in the 20% curative stage. But if I’d known there was an 80% chance it’d come back within 2 years. I’d question the point of painful surgery, awful chemo… quality of life is key, not surgeon ego. Don’t know how long we have my husband for. Can’t get a straight answer from anyone. No one will give a clear answer. So yeah , there is no hope. None at all. -
By Jj24 · Posted
@Janecav I am so sorry to hear what you are going through with your friends, I dont really have any words of wisdom but as Skippy said, I wanted you to at least feel heard and understood on here. I would say that perhaps your friend who has lost her parents is really struggling herself and maybe feels hurt that you dont reply straight away to her messages as she is grieving too. I do understand, some of my messages go completely unanswered, as I wonder what to reply to a text that just says how are you ? You would think as you are both grieving that you would be able to understand each other better but perhaps neither of you has the resources to support the other at the moment? It is all so new, this grief we are navigating 10 weeks is no time at all especially as your husband was only ill for 11 weeks. It is difficult because some days I dont want to see or speak to anyone and on other days if I do make arrangements I get really stressed or anxious if the plans are changed. I have found it is sometimes the friends I was not so close to who have been the most help to me. I really hope you find the support you need, perhaps through counselling or from other friends, or if not on here. -
By Jj24 · Posted
Sorry to hear about your health issues Rhi i think the trauma and grief can take a very physical toll on the body. I hope you are feeling better and getting stronger again. Today should be our 21st wedding anniversary, every year we would take ourselves out to a really nice restaurant to celebrate, last year he was suffering from terrible back pain but we had no idea what it meant at that stage. Looking at the photo of him from that day I can see the pain in his face but as ever he put me first and we went out for lunch. In his card he wrote here's to the next 20 years. I want those years with him back, i want our life back. We had just started to look forward to the years ahead with the kids now working or at Uni, we were making plans and couldnt wait to have that time for ourselves to do things just for us. Now I am dreading next week when my daughter will be heading back to uni and my son will be at work, I dont have a job to go back to now, so what do I do? I am intending to have counselling and have lists of things that I should be doing but somehow the days go by and I hardly ever find the motivation to do anything. I took the kids out for lunch today to mark our anniversary and it was a good way to mark the end of this time mourning together. Its only been 11 weeks but I just feel so sad and empty and my mind is on a constant loop of feeling like I let him down when he died and I continue to let him down now. Sorry for the pity party, I guess it is just the first of many difficult significant dates to navigate in the year ahead. -
By Lcb2024 · Posted
Hi all. My dad who is in his early 80s recently had his blood tests done and had one abnormal reading - his CA Antigen 19-9 level was just over 50. Normal range is around 27. I've heard that high levels of CA 19-9 tends to be associated with cancer of the pancreas, bowel, gallbladder, bile duct, lung. Is this true? He has had no symptoms apart from the right side of his abdomen gets distended. He has been referred to further tests (CT scan) in a couple of weeks so not long to wait. But just wondering if anyone has had these high levels of this CA 19-9 Antigen and what this usually means?? -
By antboo-23 · Posted
Hi all My mum has finished 6 months of gemcitabine abraxane. She's had a good result with 2 of the 3 liver lesions disappearing and the pancreatic tumour halving in size. She finished chemo 4 weeks ago and has been well up until the last week. She now needs to rest a lot and her tumour markers have gone from 500 to 3000. CT scan last week showed no change in tumour and a PET scan is being scheduled. Has anyone else experienced such a change so quickly after completing chemo? The oncologist 2 weeks ago was saying have a break and go on holiday etc but is now talking about resuming chemo. We are all feeling very frustrated Any advice would be appreciated -
By Skippy · Posted
You have gone through great trauma and parts of grief is totally unaccepting it, total disbelief, the anger, the worst images, the huge vacuum, loss, whole life changes for you at home and in your habits. I'd not worry so much about your long standing friends or reactions, they too will find it difficult to what to say or how even how to 'say it'. I spent months wanting to go back in time, wishing I'd done this, or said more. It's been one long conveyor belt of pain, images, and distress What helps me, is what if it were the other way around, and that it had been me, what would I want for 'him' the ans I found is I'd want him to find comfort, that he did his very best, and find some positive thoughts to heal from the worst of life's experiences. I hope you cope. If your friends are not available, right now, then you've been heard on this site. Many have endured your loss too and understand it. -
By Janecav · Posted
Anxiety and worry are the most awful feelings.I have lost confidence since losing my Husband from PC and I find myself more anxious and hesitant over lots of things too. No specific advice, just to say I get where you are both coming from and share your feelings. -
By Janecav · Posted
Thank You RHI I will try to ground myself in the day as you suggest.Yes self isolation helps to gather my thoughts I find.Sorry you have had health issues for the past five months but its good that you can go to your Doctor and seek help. I too am on the waiting list for counselling,which I`m hoping will help me. Yes it is a hard journey and its good that we have this forum to talk about things with others that have experienced similar trauma of pancreatic cancer and the devastation that it brings. Look after yourself too.
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