Family, friends and carers
A forum for family, friends and carers' of pancreatic cancer patients.
654 topics in this forum
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- 11 replies
- 14.1k views
Hi there My Mum was diagnosed with PC just over a month ago. It was a big shock for our family. The knowledge levels locally on this issue have been shocking (as mirrored by lots of others). My Mum also suffers from acute anxiety as well as IBS and it has been so hard trying to work out what pains/symptoms are associated with which health problem. PCUK have been the only organisation who seem to have the knowledge and ability to join up the dots!! We are incredibly grateful to the team of nurses here. She has spent some time in the local hospice sorting out drugs and even here the consultant did not seem to know about the use of enzymes. One junior doctor e…
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New Diagnosis, First Oncologist Meeting tomorrow 1 2 3
by fionaw- 54 replies
- 49.3k views
My partner was diagnosed yesterday.. I don't know the stage, the type, the prognosis, anything. The first meeting with the oncologist (at which I believe MacMillan nurse/palliative care is just one of the subject likely to arise) is tomorrow. Can anyone suggest questions they wish they'd asked - my main concern is whether he can be made comfortable, whether he'll ever be able to fly again, what foods might actually be palatable AND maybe good for him, and how on earth we can get him into a comfortable position to sleep. This is all a bit plain and simple - I've left out all the emotional pain and angst and fear and so forth. Oh, I forgot to say the original consu…
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- 7 replies
- 10.9k views
I parent our 14 (nearly 15) year old son most of the time on my own because my other half - who was diagnosed a week ago, inoperable, drain next week chemo hopefully startingnext week too - lives in the UK, we live in Spain. He's been difficult for several months but as soon as we got the news he was lovely, behaving well, etc. We've had to return to Spain for school and now, 8 days after diagnosis, he's acting up - room a mess (yes he's a teenager), not doing what told, not caring if I point out how we need to be nice with each other. Is there any online support for either teen PC family members or teen cancer family members, or parents of them? I'm at my wits' en…
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Hi all, I wanted to take a little more time to say thank you for all of your help and advice on the treatment forum. Sorry I could not do it straight away but I have two children and one goes to school 30 miles away and wants constant lifts to see his girlfriend over that way as well, I have an 8 year old in childcare and I work full time and study. Plus my obsessive researching does not leave much time for other things. I relied on my dad far too much I realised now. I am humbled by your stories that I have read and I am sure you have seen many people like me come on here thinking that not only can they conquer the world but even more impressive than that, they ca…
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Our journey to date 1 2
by Eileendonald- 29 replies
- 28.6k views
Just thought I would write down about my dad's journey after reading so many of your stories. Jan 15th dad (78) took himself to the doctors as felt unwell, a cold he said but he wasn't even sniffy, doctor rang an ambulance as he was very breathless. Met him at hospital, loads of questions and tests, eventually sent to surgical triage where he was to be kept in. They did a full CT scan as they wanted to check his chest for his breathlessness, his bladder as he has had bladder cancer. Jan 17th hospital rang me to go in and have a meeting with doctor. Took hubby and me with dad to a side room where we were told he had pancreatic cancer and that it had spread to his …
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Our journey to date
by Eileendonald- 0 replies
- 8k views
Just thought I would write down about my dad's journey after reading so many of your stories. Jan 15th dad (78) took himself to the doctors as felt unwell, a cold he said but he wasn't even sniffy, doctor rang an ambulance as he was very breathless. Met him at hospital, loads of questions and tests, eventually sent to surgical triage where he was to be kept in. They did a full CT scan as ghey wanted to check his chest for his breathlessess, his bladder as he has had bladder cancer. Jan 17th hospital rang me to go in and have a meeting with doctor. Took hubby and me with dad to a side room where we were told he had pacreatic cancer and that it had spread to his liver.…
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Feel alone
by Eileendonald- 13 replies
- 14.6k views
My dad was diagnosed on 17th of Jan he has pancreatic cancer and it's spread to his liver. They told us that it's incurable and when we saw the consultant they said that he was to weak to have chemo and also they didn't like to offer it when it would only add a few weeks onto gge weeks that he has. This week he has really gone downhill. He us looking very yellow looks like he has a suntan lol, he isn't wanting to eat and is finding it hard to get around. He says he isn't in pain although I am controlling it with regular doses of paracetamol and ora morph. His speech is slurred and he is very confused. I know in my heart of hearts he hasn't got long but I feel so alone, …
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Help for my sister please 1 2
by George- 25 replies
- 25k views
Hello, I am posting for my sister. She has given me permission. Here are some of the background. In April she was getting really bad pain that radiated to her mid back, mainly when she was sleeping. One night she had had enough and decided to go to the ER. Once there they did blood-work. That came back as showing slightly high liver enzymes. They also did a CT scan and it showed double duct dilation on her common 7mm and pancreatic ducts 4mm. No stones that she could see. So they told her to follow it up with my GP to get an ultrasound. She had that ultrasound but there was too much air for them to see. Dr told her not to worry about it, because the ducts are …
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Biopsy results
by Elaine123- 6 replies
- 11.1k views
Hi everyone the MDT meeting to discuss Pete was today and we got a phone call to say that his liver biopsy was cancerous and that he would get an appointment to discuss chemo with the oncologist within next three weeks. As you can imagine this immediately dumped him further down . In the past three weeks he has had a diagnosis of pancreatic cancer then the next week a blood clot on the lung and now cancer in his liver. He has been very quiet since the phone call and lying down for a sleep. I just feel so scared that the more things that are piled onto him may affect his determination to fight this. I know you all understand my fears. Thank to this forum for allowing me an…
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Extreme weakness, what do to?
by bubble- 4 replies
- 9k views
Hi, I wrote a post in June: http://forum.pancreaticcancer.org.uk/viewtopic.php?f=4&t=1784 and sorry I didn't write more then, but things hasn't changed much until last month. My mom had a huge pain around her liver, and her stool became white-ish. There was a biliary blockage which caused these, and doctors tried to put a stent in, but it didn't succeed because of the narrowing of the duodenum. So later they decided to do a biliary bypass surgery, which was successful, and took away that huge pain. During the procedure they took out a sample from the fundus of the gallbladder to make a biopsy out of it. The result confirmed malignancy, which the doctors already suspec…
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- 13 replies
- 14.6k views
Hello, this is my first post. I have been reading the experiences of fellow PC patients and family members and have found support just by doing this. My Mother was diagnosed 2 weeks ago, PC on the tail and some lung metastases. We have a couple of appointments with consultants and will find out whats going to happen. They want to do a biopsy and another endoscopy just to confirm. I find the waiting is most frustrating. My heart is breaking and i fear for the worst. I have read of experiences of fellow patients who have been overseas for surgery. We are looking keenly at this, and was wondering if anybody would like to share some details or stories. I appreciate …
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- 11 replies
- 14.4k views
I hope I am posting in the right place and apologise in advance for the long post! My dear Mum has pancreatic cancer and today we have been told she only has around 4 months to live. A bit of background info- Mum was a fit and active 65 year old who up until June was fine. She started complaining of backache and feeling full when eating. My Dad persuaded her to visit the doctor who ordered blood tests which came back showing raised liver enzymes. She then quickly went downhill and stopped eating, was spending all day in bed and became dehydrated and jaundiced. She was taken into hospital mid July where numerous tests were done and it was discovered she had a tumou…
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- 28 replies
- 25.4k views
Hello everyone. Like many others I've come to this forum dazed and confused after my 84 year old mum's recent diagnosis. She was told two weeks ago that she has stage 4 pancreatic cancer which has spread to her liver. In March this year she was given a prognosis of 6 months at worst and a year at best for an untreatable heart condition that she has. That was a terrible shock for our family as mum has always been so strong in body and mind, age never making a difference, but to now have this cancer diagnosis 7 months later is a double blow. Mum has awful back pain, can't eat much and is so, so tired, which is not her at all. She cannot have any treatment due to her …
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Confused
by Elemoy- 17 replies
- 21k views
Hi everyone, I'm after a bit of advice if anyone has any to offer. My dad was diagnosed with PC last year. He was very jaundiced in June, spent weeks in hospital ill, developed diabetes and then got a diagnosis. The tumour is on an artery. Since then he has had 12 lots of folfirinox. The tumour had grown when scanned after first six and remained same six when scanned this time. Consultant confirmed that it is inoperable on Friday (my parents had been convinced it was going to shrink and op would be possible). He is due to start more chemo again tomorrow and they told me that they are awaiting an appt re:radiation. I'm not sure what chemo he is having this time round a…
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Advice re nanoknife 1 2
by Joanna- 27 replies
- 25.2k views
Hi everyone, I'm new to this forum, and have read a lot of very useful information on here over the last couple of days so thank you. My Dad was diagnosed with stage 4b pancreatic cancer in May (in head of the pancreas, surrounding the artery in the pancreas and spread to the liver). Was such a massive shock at the time, but I think we are all slowly getting back to a normalish life. He's been on a trial and his latest CT shows that the tumour has reduced by 25% so that was a nice to get a bit of good news after 3 months of no good news! I was wondering if anyone had had any experiences with nanoknife - in particular when the cancer had already spread? We we…
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Mum diagnosed with stage 4 recently
by Coxylewis- 13 replies
- 15.8k views
Hi coxylewis here, my lovely mum was diagnosed with stage 4 on Christmas Eve. It is inoperable And she was offered chemo to help with symptoms. Unfortunately she only had 1 session as she's not eating at all now or taking much fluids. She's been admitted where she's having anti sickness Medication dripped in via tummy. Also potassium and sodium drip. Very frustrating she has stopped her soups, and also Her ensure drink. Now palliative care team looking at feeding tubes, which is scaring us all. Don't know if this will be permanent as they are still deciding. Unfortunately she is also in Ireland so I'm popping over to see her when I can. Feels like we're all in a nigh…
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Advice needed on how to speed up referal times
by Chris011- 7 replies
- 11.1k views
My uncle was diagnosed with primary pancreatic with secondary liver cancer 4 weeks ago. He has had a telephone discussion with a consultant with a basic treatment plan involving chemo & palliative care discussed. Since then he's been waiting to see an oncologist to set up his treatment. He has been told that the disease is terminal but obviously he's really concerned how long things are taking as he wants to understand what treatmens he might have access to extend the time he has left. Does anyone have advice or suggestions regarding how he might get things moving more quickly? xx in London is his regional Pancreatic specialist unit (he lives in Kent). What's the f…
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Hi , I haven't posted my own thread as in a way ive been denying this is happening. Husband was diagnosed with an ampullary duct tumour in October 2013 but it behaves as pancreatic cancer. He had a whipples in November and recovered well. Hes 49. In January he was about to start a trial but they discovered a 4mm mass on liver and his 19,9 marker rose to 1800 from 140 after op. They were not truly convinced what it was and decided to put him on the gemcitabine. His numbers dropped to 1400 and mass stayed the same. Plan was to stop chemo in the summer and monitor mass. He had put weight on was eating like a horse, exercising, decorating etc Two weeks ago we were told…
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Hi everyone, I have read a great many posts since finding this site a month or so ago but by no means all. My husband is 83 years old so significantly older than most of the partners or parents I have read about and I am grateful for that. I am a lot younger but we have been married for 40 years so being with him has been almost my entire adult life. Whatever disease took him would be hell but as he has heart problems I guess I had not reckoned on it being this. I do feel that given he has had a good and long life I have no real right to be posting on here at all but I am encouraged by responses to occasional posts. We both knew back in January when a diagnosti…
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Advice Please
by NorthYorkshire- 7 replies
- 11.9k views
Thanks for accepting my request to join. Not sure if I'm posting in the correct place, please feel free to move if I'm the wrong forum. I'm posting on behalf of a wonderful friend (and his equally wonderful wife). He went to docs feeling unwell the very end of June and as of 2 weeks ago was diagnosed with PC. 2 attempts to fit a stent later and he is finally losing the jaundice. he has also been put onto Creon meds. "Something" was showing up on MRI scan on his liver that they were unsure about so they did a liver biopsy. Friday brought the devastating news that cancer has spread to his liver. Palliative chemo only to be offered. The tumour is 2.5 can in the head of…
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New member...
by Veema- 22 replies
- 22k views
Hi all My husband was diagnosed at the end of November with a currently inoperable pancreatic cancer. It was still contained in the pancreas, but was pushing up against the blood vessel that feeds the bowel, so the surgeon wasn't hopeful that she could get it all out. So, the plan is to have 6 cycles of Folforinox and see if that shrinks it away from the blood vessel, with the hope of then being able to remove it surgically. We are going for the 3rd cycle tomorrow and so far he is tolerating it reasonably well...some diarrhoea and tiredness last cycle, but in general it's not going too bad. I fluctuate between being really positive (because he looks so well at th…
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Dealing with Mum's diagnosis... 1 2 3
by CurlyLittleMiss- 73 replies
- 54.6k views
This is my post from earlier, copied on to here as I piggybacked on to another thread: Hello all, I hope you don't mind my addition to this conversation but the title caught my attention. My mum was diagnosed with pancreatic cancer on Christmas Eve and since then "lost" is pretty much the word that sums up how I feel. Her diagnosis came as a complete shock to all of us, as we'd been told it was probably gall stones causing her symptoms. Looking back now, I can see that's what her GP wanted it to be, but I cannot praise him enough for how quickly he got in touch and got mum back up to the hospital when her blood tests had obviously shown something else. Mum…
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6 weeks!
by Hillbill- 14 replies
- 14.2k views
It is 3am and I can't sleep. I am still reeling from the shock of it all. 6 weeks ago today my dad (a very healthy 75 year old) had the results of a blood test taken by his GP. He had gone as he had been feeling nauseous and had noticed his urine had changed colour. The Doctor informed him that he thought he may have pancreatic cancer. He told myself, my 2 sisters and 3 step sisters that day. It was a mega blow, especially as my step mum had died last November. A week later he had started to become quite jaundiced and unwell and we all agreed that he should move to live with my sister so he could be nearer us all. As he hadn't had his hospital appointment yet we tra…
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3 months today
by kloweey- 7 replies
- 12.6k views
It was three months ago today we recieved the call from the hospice asking us to get there as fast as we could..20 minutes, 20 minutes too late, my dad passed away just before we got there, it hurts more than ever sometimes I just don't want to get out of bed I feel like I've got no one to talk to anymore because it's just "old news" to everyone else, I can't stop thinking of all the things my dads missed, moving into my first house and getting my first job, I keep thinking about the future without him and t hurts so much knowing he won't be there to walk me down the isle if I ever get marries he won't meet his grand kids if I ever have any I miss my dad more each day I'd…
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I have been following comments on this board since about May 2015 and have spoken to the excellent nurses a few times. I have found it very supportive to see come on here and I thought as Didge mentioned 'silent' members I would at last post as I probably need the support of people here. Or story begins probably in November 2014 and will end soon. In November 2014 my husband, Stephen, was diagnosed with diabetes. He wasn't a typical Type 2 diabetic but he did the sensible things and got fit and cut down on food. But around February 2015 he developed stomach pains and this was initially thought to be due to some of the medication he was taking for the diabetes. However,…