Family, friends and carers
A forum for family, friends and carers' of pancreatic cancer patients.
654 topics in this forum
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Feeling Low and Wondering What Next
by janem- 9 replies
- 7.7k views
Hi I've been reading other peoples posts but only asked one question before. I thought the people on here would understand how I feel. 3 months ago everything seemed so normal and straight forward. My dad was diagnosed with pc at the end of October and life has been a complete nightmare since. Dad had pains and then got jaundiced, they tried to put a stent in but it wasn't long enough so the second attempt 2 days later worked and he improved but was back in 2 weeks later with jaundice again, the stent was blocked and replaced by a metal one. We have been told that it is inoperable but that if chemo shrinks it they will review it and see if they can then operate. In t…
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Hi everyone, Finally I am taking the plunge and posting on here. I have spent many hours reading your posts, smiling and shedding tears, although I know none of you. I have drawn so much comfort from knowing I am not alone, and although I don't know what this will bring me,it seems the time is right. Our diagnosis was a bolt from the blue, no history of ill health, nothing, off colour for a couple of weeks, painless jaundice, scans, stent, EUS (x3!) and a positive biopsy in January for my best friend and husband. Our normal is now so very different and my children, still secondary school age have had to hear the hardest conversations. Sadly, an inoperable tumour, and…
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Just checking in
by Didge- 11 replies
- 9k views
Hello Everyone. Have been reading your posts a bit more recently and it's nice to know there are people to contact who can offer support. My bf was diagnosed at the end of Sep, operated on end of Oct and has just started gemcitabine but has to have a break after only two doses due to an infection. Got a feeling I'm going to need this forum in the months to come. Happy New Year to you all!
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After treatment
by Helen 36- 8 replies
- 7.1k views
Hi This is my first time on the Forum , although I have been accessing it for a while. My husband is just 48 and was diagnosed with inoperable PC in April last year, although symptomatic to start with these symptoms quickly disappeared with a drug regimen, he quickly felt a lot better ready for chemo. My husband finished his 6 months of chemo and 5 1/2 weeks of radiotherapy plus oral chemo in the middle of December. Now we are to wait 3 months for a CT scan to see if there has been any change in the tumour size. Is this a normal length of time to wait? it seems an awfully long time, I feel we are just waiting for symptoms to reoccur. Any little twinge and I start to pan…
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Feeling Depressed, Anxious, Guilty or Isolated?
by InfoForMum- 3 replies
- 13.4k views
There have been some really useful posts lately about dealing with the darker feelings which are bound to sometimes ambush patients, carers and those dealing with the loss of loved ones. I thought I'd start a thread to point to related posts and sources of support and information. As a carer for my Mum, someone who's father had severe bouts of depression and someone who had her own tangles with depression after my father died I've also added my own point of view. I claim no expertise or special insight, but hope it may help someone. From Dianne on the support line - a comforting and informative post about dealing with those blacker periods including links to some …
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not again
by marie souter- 5 replies
- 6.2k views
amg feels like yesterday since I lost mom and now my hubby just found out his nana has bowel cancer .... just bin told his dad has skin cancer/copd and been hiding it from us as well ... had enough like atm can;t believe it ...
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Pancreatic cancer or bile duct cancer? 1 2
by belgrade- 41 replies
- 30.5k views
My husband was admitted to hospital in early April with jaundice thought at first to be an infection or a gall stone. Within a week he was transferred to a more specialist hospital to have a gall bladder drain, after an ERCP failed due to obstruction in the bile duct and his bilirubin was 500. He went downhill rapidly with kidney and liver failure, bilirubin over 700 and pancreatitis. Following a number of scans, MRI and insertion of a stent, we were told the most likely cause was bile duct cancer but nothing could be done until his jaundice subsided and his liver and kidneys improved. By the start of May his kidney function was almost back to normal and he was sent ba…
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Skin problems
by gbest1958- 2 replies
- 4.9k views
Hi My sister is 3 years , 8 months post whipples and chemo. She's very well apart from recent shingles followed by a rash of very large boils on her back. Her last bloods 3 months ago showed slightly raised ca 19 and these are to be repeated soon. Has anyone had a similar problem? Many thanks Gillian
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mom was diagnosed with pancreatic cancer stage 4 spread to the lungs in april of this year.. pain is localised in the upper abdomen but the last 2 weeks she has had several horrendous vomitting spells with severe nausea, she has a syringe driver which delivered cyclizine anti nausea (useless) and injections of Haliperidol (also useless) FINALLY after those two weeks the macmillan nurse came and kicked arse, now shes on a different anti nausea drug WHICH WORKS and morphine 40mg through the driver (not quite enough as she still takes oromorph and has morphine injections on top) docs think there is an inflamation somewhere and have also to injection an anti colic drug along …
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We were so pleased to be offered this regimen but God its hard. We thought at first Ray was going to get off lightly, he was knackered and that seemed to be it but now the vomiting has started. I suppose its early days and it could get even worse! I keep thinking, he's got to go through all this and its not even a cure He's very noise sensitive and we sit in silence most of the time, its very difficult. Everything seems to be so noisy, even the screw cap on the milk! I have to make sure doors are closed to minimise the noise in his bedroom if I'm trying to do something downstairs. I can't make any suggestions regarding food or drink (his appetite is non existen…
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Jon's s Farewell .
by EmmaR- 7 replies
- 7.8k views
Well it all when brilliantly , Jon 's Funeral was yesterday the vicar read my eulogy and my oldest grandson 22 read the poem He is gone so loud and clear had it not been a crematorium it would have brought the house down so proud as would have been granddad ! about 180 people turned up , today was the internment of the ashes 15 year old grandson read Do not stand at my grave and weep another so proud moment ! The other grandkids put flowers in and I put a sprig of rosemary from our garden on the casket , feel so emotional tonight on my own! told the children go home and live your lives as me and your dad have I know you are there if I need you , but you must live …
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Our dad died this morning
by Thriae- 14 replies
- 9.8k views
Hello lovely people. I will post more later but have just come to say that our dear dad David died at 09:20 this morning aged 68. Dad was diagnosed in October this year and underwent one chemotherapy session. I'd just like to say thank you once again for your messages of support and for your donations to PCUK via my JustGiving page set up in dad's name and now in his memory. Love Aimie
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Bill has gone
by Jwilson- 14 replies
- 11.1k views
Well, that's it over. Bill is being cremated tomorrow. He lost the fight at 12.20 last Tuesday morning. To be honest I would not have wished him to live one more minute. He couldn't swallow, couldn't open his eyes, couldn't speak, couldn't stand and had to have a syringe driver put up a matter of hours before he died along with a catheter. BUT we have raised over 4 thousand pounds for the cause so far which he would be delighted about!!!! Much more to come as well. Purple ribbons on every child in our school, armbands in purple at every sports match, flag at half mast, school closed on Monday for memorial to Bill. Taking a deep breath and bracing myself to speak at…
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Slipped way this morning .
by EmmaR- 12 replies
- 8.6k views
My wonderful wonderful Jon peaceful passed away 7-10 this morning over the weekend he became very unwell I had amazing help off district nurses who secured a bed in a peaceful hospice on Monday afternoon the room had a sliver birch tree outside the window which he would have loved sat with him all night as did my daughter and son we left the nurses to attend him and made a cup of tea when we came back they said his breathing had changed and 10 minute later he was gone it was quick an very peaceful I think it was Jon sparing us to much heartache , he is free of that awful awful pain and all those tablets which really did nothing . He was diagnosed on the 3rd of September…
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Such a horrible disease 1 2
by jules 2015- 37 replies
- 24.6k views
Hi I have been reading the posts on here for some time but have not had the courage to post until now. My dad was diagnosed with pancreatic cancer in july and since then life had been like a really bad dream, everytime we think that things are bad, we have been hit with even worse news. My dad has been unwell since about easter and after various illnesses and tests we were finally advised that he has non operable pancreatic cancer. Originally although devastated, we were advised he could have chemo to reduce the tumour, unfortunately this made him so unwell that he ended up in hospital. It was then that we were advised that the cancer has spread towards his stoma…
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Time to say hi
by claralondon- 2 replies
- 4.9k views
Dear all You don't know this but you've all been an amazing support to me over the last year. I am writing this in the immediate aftermath of my darling dad's peaceful passing after about 13 months of living with PC(and I use the word 'living' deliberately). Dad was a wonderful man, but he was intensely private in many regards, and as such I never felt I could post openly about his experiences on a forum. I also hoped that he might occasionally come on here to read all the inspirational posts and would have felt bad if he'd seen me posting about him without his permission. Anyway, since dad's diagnosis last October I've been on this forum multiple times a day and…
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Hubby coming home from hospital .
by EmmaR- 11 replies
- 8.7k views
Well Jon as been in hospital for 10 days after a PE and as been on oxygen most of the time they have been weaning him off it and say that his levels are fine ! but Jon is not convinced he thinks he should have oxygen at home , I think he was so frighten by the pain when he couldn't breathe that he is convinced it will happen again ,well they are hoping to send him home maybe later today he is also coming home with a commode plus bottle which I hope he won't need we live in a bungalow ,but it think his confidence are been really shaken I know he is very poorly which could be the result of the PE or is it the progression of the dreadful disease ,feeling very uptight about …
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Stop press: but remaining realistic
by Thriae- 2 replies
- 4.8k views
Okay, I posted earlier about dad's serious decline... Syringe driver, no coming home from hospital, fluids and antibiotics stopped. Well, I was reading over earlier replies to my threads and was reminded of a poster who's husband had a very bad reaction to first Chemo... I also, in the meantime, received some text updates from mum and sister who were with dad today (I had said a final goodbye to dad yesterday and had not intended to return, expecting him to die over the next few days due to decline and stopping of fluids and treatment for sepsis). Although dad is still unable to speak - relying on hand motions and murmurs - still with catheter and still gravely ill, he…
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Very down and despondent.
by EmmaR- 3 replies
- 5k views
Hello all, Just feeling so so low , Jon sleeping again not improving at all had his steroids put back up to 4mg a day hope that will help with eating as he is not at the moment , first visit from macmillan nurse and district nurse this week both lovely ladies but just put this Awful thing into perspective more plans ! I feel other people have taken over our life know they mean well but .... This morning after his tablet taking session and what a session ! He said he could just lay back and forget it all I felt like saying ok then ! how cruel am I ,we were fit 70 year olds ( thankfully I still am ) who felt like 50 year olds ok girls don't lol until two months ago Jon…
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Scared for my dad 1 2
by Helen_Catherine- 42 replies
- 27k views
Hi I have never posted on anything like this before but hoping that just making my feelings known with others in a similar situation to me might help. I have found out unfortunately that not a lot of people I know, know anything about this type of cancer as I didn't until this nightmare happend to me and my family. My dad went to the doctors a few months ago with complaints he wasn't feeling well, the symptoms were strange, he just felt generally unwell, no appetite, stomach problems and was losing a lot of weight. My dad was trying to lose weight anyway for my up and coming wedding so we thought he was just being careful what he was eating. About a month before my …
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Our hero lost the battle 1 2 3
by karen17- 55 replies
- 31.4k views
Can't quite believe I'm posting this but my brave bob finally passes away in the early hours this morning. We are exactly a year from diagnosis and he has worked full time, used the gym and really lived life 2 the full till 5 weeks ago when jaundice took him into hospital. Those weeks were not easy but we finally got our wish for him to be transferred to our local community hospital on Wednesday where he received fantastic care till the end. My daughter and I were with him on beds by the side of his with me cuddled up to him in our usual sleeping position. He had been fairly unresponsive all day but was aware that family visited and we brought his dog in for a few hours. …
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Pin badges
by KATB- 18 replies
- 14.6k views
Does anyone know how we can get hold of the purple ribbon pin badges? I followed a link to this site from Twitter but it didn't work and I can't even find the page at all by coming here directly. Hayulp!
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coping - or just
by liz99- 21 replies
- 13.8k views
I am writing this in the hope that putting it 'down on paper' (or to speak) will help me deal with the emotions I am currently facing. I am sure many of you will understand the difficult emotions of living with someone with pancreatic cancer. A short summary - my husband (aged 44) was diagnosed in April this year with pancreatic cancer. We were informed it was inoperable due to vein involvement. We however discovered a surgery in Germany that would operate, we went for the operation in May - and discovered the cancer had spread to liver - so operation did not happen. During all this time we were awaiting oncology appointment here in Uk. We then waited 8 weeks for a…
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My Brave Dad here in Ireland
by Heidilyn- 7 replies
- 6.2k views
HI everyone, I have been reading your posts the last few days, and can I first say thank you for your honesty in how you are coping with the god awful disease. My Dad was diagnosed with a Pancreatic tumour in May, he was very jaundiced and had tummy pain, he had an ERCP fitted and seemed to be doing ok. In early June, he started vomiting one day and got very confused, he was shaking and was very cold to touch, it turned out the stent was `in transit` so he had the plastic one replaced with a metal one, he is taking Creon to help his appetite. He started on Gemcitabine (affectionately known as Jameson in our house as the treatment bag comes in a green sleeve)for 9 se…
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J-T, Karen, Cathy??
by Jwilson- 21 replies
- 13.7k views
Has something gone a bit wonky on the forum? I could see that people had posted recent messages but when I looked I couldn't find the recent stuff? Perhaps I am being a bit thick! How are things with all of you? Please......no bad news for anybody. Bill about to start round three of chemo tomorrow. Within the next couple of weeks he will have a scan to see if the chemo is helping. Dreading that meeting! Anyone else got DVT in the calf muscles? Bill taking claxane for that but the doc is concerned about the amount of swelling in the legs and feet. Could be kidney function or the tumour leaning on superior vena cava. Dunno how you spell that. Really hope its not…