A forum for family, friends and carers of pancreatic cancer patients

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Dcoleman
Posts: 38
Joined: Wed Apr 30, 2014 10:46 pm

my heart is broken my dad has gone x

Postby Dcoleman » Sat May 24, 2014 4:19 pm

My dad was diagnosed on march 20th with pancreatic cancer that has spread to his liver he will be 79 in June.. We were devastated as march the previous year the hospital did a scan and said there was a cyst on his pancreas but was nothing to worry about. It was only because my dad kept saying he didnt feel right that our GP did any more. Sadly a year later we are given this news. He has gone down hill considerably since we were told. He has lost at least a stone in weight he is barely eating. He did have one chemo appointment but decided that he wouldn't continue and as he put it ...would let nature take its course. Now we have no appointments at the hospital but a McMillan nurse is coming round on Wednesday. Today he says he feels very tired. His stomach feels very rigid and he says it feels like it does when you have an upset tummy a bit like butterflies? Luckily though he isn't in pain and has not suffered any pain at any point and for that I'm very grateful. Does anyone have any ideas on what it could be or what I should do. This is all very new to our family and we are a bit baffled as to how we should know when he is going down hill rapidly in case we miss the signs! Who should we contact?
Last edited by Dcoleman on Sun Nov 02, 2014 5:12 pm, edited 2 times in total.

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Please can someone advise me!

Postby Cathy » Sun May 25, 2014 5:45 pm

Hi there

Sorry to hear about your Dad. Well done on finding this forum though - you will get a lot of support and good advice from here.

Glad to hear that your Dad isn't in any pain. Of course, it is entirely up to your Dad but chemotherapy isn't necessarily debilitating and can give quality of life. Gemcitabine is normally easily tolerated. Perhaps his oncologist might have a chat with him?

Re his weight loss... many PC patients need extra enzymes to help digest food. Ask the GP for a prescription for creon and start on 40 000 per meal to see if that helps. The GP can also prescribe high calorie drinks and the like. I added cream to everything when my partner was losing weight.

I would ask for his tummy to be examined. It might be a build up of fluid which again can happen with this type of cancer.

Very best of luck

Cathy xx

Dcoleman
Posts: 38
Joined: Wed Apr 30, 2014 10:46 pm

Re: Please can someone advise me!

Postby Dcoleman » Sun May 25, 2014 7:58 pm

I think I will get a lot of support from this forum. Thankyou for taking the time to reply to me. I will contact the GP on Tuesday to see if he can get another scan maybe. Since going to the hospital in march and one round of chemo we have seen no other health professional so we are very much in limbo as to what happens next really. I have seen a lot of people on here saying about creon and we will ask the Macmillan nurse when she comes on Wednesday. He seems to be losing weight all over but his tummy seems to be getting larger so maybe you are right. He also says he feels very cold all the time is this just another symptom of this horrendous illness?
Xx

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Please can someone advise me!

Postby Cathy » Sun May 25, 2014 11:28 pm

Hi,

I understand about the limbo thing. It can feel a bit disjointed. I would say to ring your oncologist or their secretary to find out when your Dad will be seen or what happens next. Your Macmillan nurses will be able to help a bit as well.

It "could" be that your Dad losing weight is making his tummy more pronounced but ask for him to be examined. They can do this just by hand but, if in any doubt, his GP can refer him for a scan or X-ray.

Best of luck

Cathy xxx

LMD
Posts: 120
Joined: Tue Apr 15, 2014 10:06 pm

Re: Please can someone advise me!

Postby LMD » Mon May 26, 2014 10:10 pm

Hi there,
Sorry to hear about your dad's diagnosis. Hopefully the Macmillan Nurse will be able to give you some answers and, of course, your GP tomorrow.

My father has also lost a lot of weight (and hasn't really put much back on) - he takes Creon with each meal.

Thinking of you x

Dcoleman
Posts: 38
Joined: Wed Apr 30, 2014 10:46 pm

Re: Please can someone advise me!

Postby Dcoleman » Sun Jul 20, 2014 8:26 pm

Just wondered what would happen next? Dad had a blood transfusion about 3weeks ago which really helped him as he was getting really out of breath and felt really cold all the time, after wards you could really see a difference. But now he has reverted back to how he was... It is so awful to see him just sitting there head in his hands. He isn't eating only having fortisip drinks and is so out of breath with out doing any thing. Is this how we will know that he is starting to go down hill quite rapidly or will they keep giving him blood transfusions. We have no idea what the next step might be i was wondering if any one might know. It's awful seeing my dad like he is its actually heart breaking. Please can some one advise me x

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: Please can someone advise me!

Postby sandraW » Sun Jul 20, 2014 8:48 pm

Sorry I don't have any answers for you, but I just wanted to let you know I am thinking about you take care sandrax

Dcoleman
Posts: 38
Joined: Wed Apr 30, 2014 10:46 pm

Re: Please can someone advise me!

Postby Dcoleman » Mon Jul 21, 2014 10:28 am

Thank you Sandra....it's so hard seeing dad deteriorate like he has. Everyone talks about breast cancer and all the other cancers but no one discusses pancreatic cancer and I now realize how devastating this illness is that cannot be cured in many cases as it is too late to diagnose. Times are going to be tough and I'm sure we will get through it but its the not knowing what signs to look for that is the hardest x

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Please can someone advise me!

Postby J_T » Mon Jul 21, 2014 10:49 am

So sorry to hear about your dad and how he is struggling. Yes, this type of cancer is relentless :(

His breathlessness may due to clots in his lungs, clots being common in pc. What has your doctor said? He could maybe doing with having clexane injections.

I fully understand what it is like to see your loved one so low - that doesn't really describe it but it is awful. All you can do is support and love your dad, hold his hand and make sure he gets the palliative care available.

Very best wishes
Julia

Dcoleman
Posts: 38
Joined: Wed Apr 30, 2014 10:46 pm

Re: Please can someone advise me!

Postby Dcoleman » Mon Jul 21, 2014 7:07 pm

Thank you Julia....it does feel at the moment we are coping alone although the hospice are really lovely. Dad has had his worst day today. Constantly cold out of breath and now he has got the shakes. He is going in tomorrow for a transfusion but I'm scared that these symptoms are worse and that we won't have done enough to look after him properly in his final days. Unsure of what to do next x

EmmaR
Posts: 197
Joined: Fri Sep 20, 2013 11:06 pm

Re: Need some advice if possible !

Postby EmmaR » Mon Jul 21, 2014 11:39 pm

Hello I agree with Julia the breathlessness could be due to a clot my hubby had those symptoms and I remember Julia saying about them so I called an ambulance and he did have a large clot on his lung so be aware hope all will be ok but PC is a bloody awful disease .
Take Care .
EmmaR

Dcoleman
Posts: 38
Joined: Wed Apr 30, 2014 10:46 pm

Re: Need some advice if possible !

Postby Dcoleman » Tue Jul 22, 2014 11:51 am

I took him to the hospice this morning and raised the issue of the breathlessness with the nurse and she said it's probably because his blood levels are low and it's not allowing the oxygen round his body. But I'm worried it could now be clots but I won't be there to ask the question when the doctors come round and I didn't want to say anything in front of dad incase it scared him. Thank you for your replies it certainly is so comforting to know we are not alone with this terrible illness x

PCUK Nurse Jeni
Posts: 1075
Joined: Mon Jun 14, 2010 1:30 pm

Re: Need some advice if possible !

Postby PCUK Nurse Jeni » Wed Jul 23, 2014 5:24 pm

Hi there,

The blood levels you are referring to here are a specific component called haemoglobin, which is what carries oxygen around the body. If these levels are low, then it is called ANAEMIA. It can cause extreme fatigue, breathlessness and low energy levels etc....Also, the cold feeling your dad has had.

He should feel much better after the blood transmission, as this will allow enough oxygen to his vital organs again, and improve his energy levels.

I hope he feels better soon.

Kind regards,

Jeni.

Dcoleman
Posts: 38
Joined: Wed Apr 30, 2014 10:46 pm

Re: Need some advice if possible !

Postby Dcoleman » Thu Jul 24, 2014 7:23 am

Dad came out of the hospice last night and he still isn't good. I think because the last time he had the transfusion he felt so much better that this session would make him feel the same. He seemed whilst he was in there to feel quite perky he ate more whilst he was there than he had in the 3days leading up to when he went in. But he came out feeling miserable and he now says that he has bad back pain though he seems to think that is due to the bed.... I'm unsure if it is the cancer. Up until now he has had no pain whatsoever which when you read about the symptoms of pc they all say there is varying degrees of pain. So it has been nice up until now that he has been pain free. So not so good and when you consider that when we went to the docs hey said he would have about 6 months ( being diagnosed on march 20th) it seems like his symptoms are starting to lead to his decline which I'm terrified of. My mother in law died of pc two weeks ago but she passed away quickly and in the end had a pulmonary embolism. It was very sad but looking at my dad going through what he is going through I just feel what a lovely release for her. Xx

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Need some advice if possible !

Postby J_T » Thu Jul 24, 2014 9:01 pm

Its so hard isn't it? Just keep supporting your dad as best you can through these very difficult times. I hope his pain can be sorted out so he feels more comfortable.

So sorry to hear about your mil too.

Julia x