my heart is broken my dad has gone x

[Dcoleman]

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?

Edited November 2, 2014 by Dcoleman

[Cathy]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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

[Dcoleman]

Right...what to do next. Dad has only been out of bed for about 2 hrs all day. He still has these terrible pains in his back that seem to build up and then shooting pain happens. He also has pains in his tummy. It's hard to understand or gauge exactly how I'll he is because he was always so fit and healthy. Is this the next stage of his illness.? He hasn't eaten anything really only his fortisip drinks and the weight is still falling off of him. I feel like we are letting him down by not doing something to help him if this is the last few weeks that he has with us. Has anyone got any advice as to what I should do x

[J_T]

Has he got a Macmillan nurse? Ours was brilliant at controlling pain issues together with our GP. Nag them, till you get it sorted!

Julia

[Dcoleman]

I wasn't with dad when the man from the hospice came. I'm not sure that dad tells him everything which doesn't help. I feel like I'm being a nuisance when I phone them. Should I phone them again do you think ?

[brodders]

It sounds to me like you are being the perfect loving daughter. My dad and I felt like that about my precious mum- it's normal. Are you with him now? Is he in a lot of pain. My dad and I called the night team out, they were brilliant. They gave my mum pain relief and something for her nausea- they came within the hour and 3 times in the night. Please you are not alone. Take care - Cate xxxx

[brodders]

Hope your dad had a good night sleep. Thinking of you Cate xx

[Dcoleman]

Thank you cate. Dad had a better day today he is now taking tramadol regularly which seems to be helping with the pain. He managed a cup of soup as well which isn't much but is better than nothing I guess. He managed to stay out of bed for longer as well today which is good. I decided that we embrace the good days as not sure how many more good ones we shall have x

[Dcoleman]

Dad seems to have quite severe breathlessness now. I gave read that pc can mean that there are blood clots on the lung or pulmonary embolism should I be concerned and phone the hospice I'm not sure what I should do x

[brodders]

How are you getting on. My mum had excellent care provided by the district nurse- which then fed into a night team. They were very helpful and kind. Sending you lots of love. Are you on your own with your dad? Xx

[Dcoleman]

No.my mum and partner are here too.i just feel like I'm being an inconvenience by contacting the hospice if it's not necessary.

[SueH]

Hi I would give them a call. You are not an inconvenience!! They are there to help. Hope all goes well. Sue