Family, friends and carers
A forum for family, friends and carers' of pancreatic cancer patients.
649 topics in this forum
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Our story...
by WhatEvenisaPancreas- 24 replies
- 31.2k views
I'm hoping writing this down will feel cathartic and allow me a nights sleep! Hello! My step dad was diagnosed with inoperable pancreatic cancer with mets to his liver in January 17. It was discovered through a CT scan to get to the bottom of something unrelated, which turned out to be nothing. It was an incredible shock, obviously. He is 57 this year, incredibly fit (a postie) and healthy and had experienced no symptoms other than a tummy pain which the doctor said could be muscular. No timescale was ever discussed as he didn't want to know, but he was told it was inoperable and would be on palliative care only. I took to Google straight away to absorb every piece…
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You've got to be kidding me...
by MaxineR- 7 replies
- 12.9k views
Apparently not. Two years (July 2015) ago my mother was diagnosed with T-cell leukaemia/lymphoma. It was described to us as rare and aggressive and she was so poorly we had 'the chat' in the quiet room; you know the one with the warning shots across the bow and then the boom - she's on a knife edge. But my mother is made of the strong stuff and after a half dose of chemo she was well enough to complete the course and kick cancers butt. Apparently not. Fast forward to 2017. A routine check up on bloods for the lymphoma in June was all clear. Amazeballs, we all cried hurrah! and carried on business as usual. However at the beginning of July Mum started that thing again …
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New diagnosis 1 2
by Cjg- 25 replies
- 29.1k views
Hi. My partner is 52. He has just been diagnosed with adenosquamous carcinoma of the tail of the pancreas that has spread to the liver. We are in turmoil. He has had his first course of Folfirinox last week. Our lives have been turned upside down in a matter of 5 weeks. I have no idea how we are going to get through this. We feel this is just one big nightmare that we are going to wake up from sometime soon. Everything is just too much at the moment, and I feel overwhelmed and am struggling to cope with the every day issues of life. We have 5 wonderful children between us and some good friends. We are terrified for the future but really trying to be positive but it's so h…
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- 3 replies
- 10.7k views
Hello to all of the wonderful people of the forums, I am still in shock so please excuse the very confused nature of this Post... I am the sort of person who likes to study and find out as much about things as possible, if that makes sense. The Consultant informed my Mum yesterday that the Cancer is inoperable but that a biopsy taken from his liver will determine the type of cancer as one responds well to chemo and the other doesn't? I am not sure if this has been discussed with the local pancreatic specialist centre (but I presume a discussion has taken place). I am trying to research as I much as I can, having found the Pancreatic Cancer website and read some of t…
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FIL recently diagnosed
by Wonderland- 2 replies
- 8k views
Hi everyone, i've been reading through this forum for a few weeks but hadn't plucked up the courage to post. My FIL has just turned 60, he had stomach cancer about 4.5 years ago, had chemo and had part of his stomach removed. That treatment worked and he was fine up until about 8 weeks ago. Started getting more tired, losing weight etc, then turned yellow. Was admitted into hospital, they put a drain in and did a scan, said they could see a blockage within the pancreas. Due to the reconstruction from last time, they can't put a camera down his throat or even through his belly to have a proper look. They've said they will treat it as cancer but aren't 100% sure. I be…
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Re dark thoughts
by Norma- 4 replies
- 10.9k views
Hello everyone, new to this my dad god bless him has reached the ripe old age of 87 without much illness when suddenly to be told in January this year that he probably only has 3 months to live, he has got pc with it having spread to his liver I am caring for him but I am finding it very difficult to deal with all the thoughts about ending his life sooner he keeps saying what about throwing myself under a bus or shall I book a one way ticket to Switzerland I tell him this is not going to happen but he still persists, I have told the nurse but all she says is don't leave any tablets about, anyone else had this situation, please reply as I am really struggling not to loose …
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Grumpy's Story 1 2 3 4
by Quickasyoucan- 95 replies
- 95.5k views
No not one of the 7 dwarves! My Dad, John, aka grumpy to his 7 grandkids (his choice of grandparent moniker) Just thought I'd start a thread in honour of my Dad. Dad is 83 and until a few months ago a v active go up a stepladder with a chainsaw to trim the hedges type of 83. We lost my darling Mum at 70 to motor neurone disease in 2010 so unrelenting b*stard diseases seem to be our thing. Dad had a blip in 2014 with a large dvt in his leg and, as I have mentioned elsewhere, they did ultrasound him at the time but nothing pc found. Since then he has made several trips here to Australia (where 2 of us live) and generally acted like a 60 something. Fast forward to end …
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Support from your local Hospice
by Sandiemac- 4 replies
- 9.6k views
I have a thread running elsewhere (Stephen's Story) but I wanted to let you know about the support we are getting from our local hospice in the hope it might encourage someone to contact their local hospice in case they were unaware of the help available. I know Marmalade is a fan and has benefited from their resources. Stephen is stable at the moment and at our most recent visit to the oncologist at the beginning of May we were asked by the Macmillan nurse if we wanted the hospice to contact us. Like most people I associated hospices with end of life but they are much more than that. Anyway, briefly, Stephen is now attending a Wellness day weekly where he gets pe…
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Hi. I've been a lurker for a few months and have taken the plunge, so to speak. My husband was diagnosed last October 2016 after being ill for 9 months. He also has bladder cancer but this hasn't been a major problem and has taken a backseat since PC was diagnosed. He had a biliary stent fitted before Christmas because of the jaundice and had 1 round of chemo but it caused the bladder to bleed and he spent 2 nights in hospital on antibiotics so he's decided not to have anymore. The Macmillan nurse calls every week and the DN calls every 2 weeks. The GP also calls every 2 weeks. He's on 120mg MST daily with Oromorph as and when he feels he needs it. He's also on dexomthaso…
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Nina's Dad 1 2 3
by Justamo- 57 replies
- 59.2k views
started for Nina to post her news . . . and copied over from my thread. Hope everybody is happy with that !
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A time to live
by Didge- 3 replies
- 10k views
If anyone missed the BBC's A time to Live this week it is really worth watching on catch up.
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Hi everyone my 67yr old husband was diagnosed two weeks ago with PC with liver mets.He was diagnosed because of jaundice which steadily became worse over a two week period until we became so worried that we attended the A&E department of our local hospital . He was admitted that day and had an endescope next day which led to a diagnosis of PC and had a stent inserted to bring down his level of jaundice. We were told that his results would be sent to the pancreatic unit of another hospital who would then discuss any treatment options which could go ahead after the jaundice levels fell. However seven days later we got a phone call to say that he needed a liver biopsy so…
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Calling all survivors!
by Didge- 3 replies
- 9.5k views
I would like to make a request to survivors! We know that there are long-term survivors out there but they rarely post. Understandably, they want to get on with their lives and forget about PC if they are able. However, if you are one of those who has perhaps used the forum, or just been a silent reader, it would be very helpful if you could set a reminder once a year to come and say hello. It is very daunting for new patients on here when they read some of the posts and hard to keep their spirits up. Some survivors also feel somehow guilty when others are having to cope with bad news. But as it has been said before, we like good news and it is so important for thos…
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How long to get definite diagnosis 1 2 3
by Bowie- 72 replies
- 75.7k views
Hello, my beautiful husband was diagnosed on 27th March with likely pancreatic cancer stage iv. He hadn't been ill, just lost a stone since Christmas and some intermittent diarrhoea. GP wasn't convinced anything much was wrong so he paid for tests himself, colonoscopy and finally CT scan. He then had to wait to see a consultant, then biopsy and as that was inconclusive waiting for second biopsy of metastases, but how long does this all take. I'm ringing the hospitals everyday, but apparently there are a lot of other people waiting and if he chooses to go private the Macmillian nurse has said he will be taken out of the NHS and will have to pay for all and any future …
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Waiting for more news.....
by neurogirl- 13 replies
- 13.2k views
Hello All My sister hasn't been feeling too good for a few months now. She's been back and forth to her GP, had various blood tests with nothing being identified until the last set, which identified the possibility of pancreatic cancer. She's been urgently referred to an oncologist and is waiting to hear when the appointment is. We don't know what to think because pc being put forward as the thing that needs to be investigated further is very worrying. It hasn't been suggested on a 'we need to rule it out basis', it seems quite specific. Can anyone share their experiences a period like this, where something is a possibility, but how much of a possibility is uncertain, …
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My mum has been diagnosed with this awful cancer on 20th May. She is/was a fit and healthy 76 year old playing golf, tennis and walking! Just before Christmas she thought she had digestive problems and visited the dr a total of 4 times. Each time she was prescribed tablets that did nothing. On the bank holiday weekend she had stomach pains so booked a private scan at the hospital. They said they could see something and would fax her doctor. When she went to the dr's they hadn't faxed the results. My mum took herself to A and E and 2 weeks later they diagnosed pancreatic cancer! They have said it is inoperable! On Tuesday she is going in for a stent and then will see an on…
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My mums story
by Blossom- 11 replies
- 14.3k views
Hi everyone my mum is 83 and over a period of about 3 months I noticed her appetite had decreased and she had lost some weight, not a bad thing I thought because she was a bit overweight in the first place she also had a few tummy upsets on the odd day and it didn't occur to her to tell me that her stools were very pale. Then about 5 weeks ago at the weekend, we were out and I noticed that she looked really yellow. On the Monday morning (I live with her) I spoke to her about it and she said she hadn't noticed but I telephoned the Doctors and got an appointment that afternoon. Before we went my mum said shall I take a water sample and I said why not but was shocked when I …
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Mum refusing Whipple operation.
by michelleharrison- 9 replies
- 14.1k views
Hi All, My mum is 76 and we receieved the news that she has PC, we're not new to this cancer my grandmother died of it too. We're lucky and live close to a specialist centre. We went to see the consultant and he's told us that my mum is a lucky one and it's operable, and she can have the Whipple. I was delighted to hear this news, but my mum is refusing she's terrifed of the operation and she thinks she won't make it through the operation, or even the recovery. The thought that her digestion will never be the same again, seems to horrify her. I've spoken to the Macmillan nurse that's been assigned to us, he's suggested looking at the Whipple Warriors and I also cam…
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Travelling with stage 4 from spain
by Pipster- 3 replies
- 9.6k views
Hi, My dad was diagnosed in January with stage 4 pancreatic. Inoperable, but offering (initially) palliative chemo on a trial. Then he got jaundice and so has had 2 bile drains and a stent put in but now waiting to hear if chemo is still an option. Problem for me is he lives in Spain and i don't speak Spanish, and neither of my parents are really sharing full details. He is keen to come to visit me in the uk which i am keen to support. A short visit over easter, and then another at the end of april. My GP says he can sign on as a temporary patient for 3 months. Will he need any special permission to travel? Will he be fit for travel after chemo? Is he likely to have…
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Mom's Story
by LLA- 5 replies
- 10.7k views
Hello Everyone, My name is Lisa and my mom (67 yrs) is undergoing tests to find out what is going on with her. I've spent some time on this forum over the last week and have already learned a lot, thank you for sharing your stories! What we know so far: mom had severe pancreatitis (almost lost her) last summer but she pulled through that. Since then, she has had diarrhoea on and off, has had periodic pain in her abdomen, has been weaker than usual (weaving when walking and falling more often). She was also just told her kidney disease which was diagnosed about a year ago has increased to stage. Mid January, she got ill with either a virus or infection of some sor…
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- 11 replies
- 13.6k 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
- 47.7k 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
- 10.4k 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
- 27.7k 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 …