Not long left for my Wonderful Dad

[poochy76]

Hello,

Glad I have found this website, I've found so many of the comments very useful.

My Dad was diagnosed with Pancreatic Cancer almost 2 weeks ago now and has gone from his normal self to a very frail, ill man in this very short space of time. We were told last week that the cancer had spread to his liver and then today that they will not be giving him chemo as he is too advanced.

Obviously this is a lot to take in and deal with, especially when you know officially that there is no hope. He had a biopsy on his liver last week which we are still awaiting the results on, but the doctors seem sure already that it's bad news. We haven't been given any idea of how much time he has left yet, but I'm expecting it to be weeks if that.

Dad is still struggling to come to terms with this as we all are, but his main wish is to get rid of the nausea and vomiting which is making him miserable. He still has an appetite but eating makes him really uncomfortable and usually sick which completely exhausts him and hurts. They were giving him anti sickness tablets (cyclizine) and have more recently tried him on Ondansetron via IV. Neither of which is helping. Today they started giving him his pain relief and anti sickness from a pump to under the skin.

Just wondering if anyone has any ideas on other ways to treat him nausea, even if it is to make it a little better at least. If he is unable to eat normally will the hospital have to tube feed him?

They changed him from codeine tablets to morphine via the pump today, so am hoping this will control his pain more successfully. At least he won't be vomiting up his medication now. To add to everything he had an endoscopy on Tuesday where they discovered his ulcer was bleeding - they think they have stopped the bleeding now - I hope they are right. He's also been on a little extra oxygen as he might also have a chest infection. I know it's easy to lay blame but he only went into hospital with stomach pain, and now he has all these other issues and is so weak and incapacitated already. Two weeks ago he was completely normal (apart from the pain). Is this how it happens, or is it possible that the cocktail of drugs is making him worse?

Just want him to be comfortable for the short time he has left. Any advice is welcome,

Shelley

x

[laura]

hi shelley, so sorry about you news as dad is in hospital you could ask if there is a specialist oncology nurse, she will be part of your dads team, thet usually are very helpful and be able to answer your questions, of which i am sure there are many, also macmillan nurses are ther for the family as well as your dad.

every case is so different ,,try not to read more into what is said, sometimes whilst waiting for test results the drs cant say too much in case its wrong, im sure everything that can be done will be to have your dad comfortable and out of pain, this is such a frustrating cancer, as all are,but it can hit so quick, ours is 16months since diagnosis my husband has just had his 34th week of chemo, not such a good day 2day, but the only way is up, keep your chin up and talk to your dad about whatever he wants hes probably got different worries to you. my thought are with you xx

[poochy76]

Hi Laura,

Thanks for your message.I've been hoping to talk to someone specialising in Oncology - the problem is that Dad is still on a general ward for people with Gastric Issues and other general things. His Consultant is a gastric surgeon not an Oncologist. He has pretty much written Dad off already and has the worst bedside manner -and upsets my Dad every time he talks to him. Because he has decided there is no point giving Dad chemo he hasn't been put under the care of the oncology department. We did have a Macmillan Nurse and a Palliative Care Consultant speak to us and Dad about him going into a hospice, but as Dad seems to be bleeding internally again so he will have to stay in hospital. They seemed more keen on helping Dad - but only by making him more comfortable. But I don't really want people to keep telling Dad how ill he is - I know he should know the facts but he keeps talking about things in the future and would hate for him to lose that hope.

We are expecting the worst news again as they think it may not be his ulcer that is bleeding. it may be his gallbladder, which they can do something about - but if it's his Pancreas then they have told Dad that they wont be able to do anything for this. He is having another endoscopy on Tuesday morning. I tried speaking with the doctor about this but was only able to speak to the Junior Doctor who couldn't really tell me anything other than that they were just treating him symptomatically now - which we knew already. The consultant gave Dad the choice of having the endoscopy - and as much as dad hates these he decided to go ahead which shows he still has some fight. It surprised me that if he had said no they would just leave the bleeding - which amazes me.

I know Dad can't be cured, I know that he doesn't have much time left, but I feel like the NHS has given up on him. Will they really just leave him to bleed to death?

He had a really good day yesterday - was like his old self again - it was so lovely, and made us all feel so much happier. Then last night he fell over on his way back from the loo and this has really shook him up. He was really tearful and tired today. He was sick twice - compared to yesterday when he wasn't sick at all.

I've been trying to learn as much as possible about his cancer, the complications and the medication - not sure if this helps my state of mind, but I'd rather be informed than ignorant.

How is your husband reacting to chemo? What stage have they diagnosed his as? Sending you lots of hope and hugs that the treatment works - one thing I've learnt is that no two cases of PC are the same, and many people outperform expectations. Hope is a wonderful thing, and not to be underestimated. xxx

[lynbo]

Hi

My husband was on the gastric ward too, which was a nightmare, even though he was diagnosed with pc, he still went back there when he had to go back to hosp 3 days before he passed away?

He had metaclopramide tablets for the sickness, which worked, and my mam also had these when she was in hosp a few weeks ago, admitted because of constant vomitting.

You could ask?

I know how frustrated you feel, it is like they have give up when they realise it's pc and spread, I felt the same.

Keep your chin up, politely but firmly ask to see someone from oncology, take a note pad and your questions you want to ask.

Otherwise you forget what you want to say.

Take care

Lynne xxxxx

[PCUK Nurse Jeni]

Hi Shelley,

So very sorry to hear the situation so far.

Lynne is right -you should ask to be seen by an oncologist. Surgeons are not oncologists, so should not make a decision for your dad not to have chemo without consulting with an oncologist. It is the same as saying an oncologist advised "no surgery" - it is not their specialist area. Even if there is no chance of chemo, they are the right people to refer onto hospice, Macmillan etc...Of course, they may well have discussed this at the Multi-Disciplinary meeting -try and find out if this is the case.

(See http://www.pancreaticcancer.org.uk/treatment_mdt.htm for info on MDT.)

You can also ask for your dad to be seen by a hospital palliative care nurse -he may have been seen already, as they may have been the ones who set up the pain/anti-sickness pump? If not, then they should visit your dad and assess his situation.

They won't let your dad bleed to death -they will try whatever is necessary to stem the bleeding. Sometimes they even use medication for this, to help. Unfortunately, even after all this intervention, a person can still bleed, but it does not mean that he will just be left until this happens. In this case, the surgeons are the correct people to help with these symptoms.

Regarding the feeding, generally speaking, they would not put feeding tubes into people who are in the palliative stage of disease. They may pass a tube down the nose, and into the stomach, called a naso-gastric tube. This is less invasive, and the person can be fed overnight, and/or during the day. You could ask if they intend to do this. Also ask for a dietician to review your dad, and assess his intake, if he is eating anything.

Please feel free to email me at support@pancreaticcancer.org.uk if you need any further information.

KR,

Jeni.

[poochy76]

Thanks Jeni and Lynne,

Dad had an endoscopy today to treat his ulcer. They injected it with adrenalin to temporarily stop the bleeding, he ended up having to have an ecg afterwards as his heart rate shot up to 140.

He has been seen by the palliative care consultant who was the one to set up his pump - and is trying to get him a place in a hospice. She seems to think that my dads pancreas is bleeding, but not sure how they know this for sure. I didn't see the surgeon today as he was in theatre all day - but Dad also said that he told him after his endoscopy that his pancreas was bleeding - but then the ward sister said she had read the notes and all that was mentioned was his ulcer and how they treated it.

I spoke in private with one of dads other doctors who would only say that he couldn't answer any of my questions and that he would pass my queries onto the consultant. I also requested that Dad wasn't given an more bad news directly - and that we would prefer the doctors to tell us instead. But this also seemed to be an issue and was apparently up to the consultant what he told dad or not.

Today the Palliative Care consultant told my sister that Dad only has a week or two left. They have doubled his morphine to 60mg via the pump. They have even stopped doing his obs. I don't want to spend dads last few days trying to fight the system but feel like he could be getting better care and that we could be better informed or counselled.

Wouldn't wish this on anyone - it's so awful to have no hope, and to just watch my amazing dad slowly slip away. My first baby is due in October and I'm heartbroken that he won't be here by then.

[lynbo]

Hi Shelley

I think it's time to be more firm, maybe you and your sister should go to the hospital and ask to speak with the consultant oncologist?

Tell them you want your dad moving to a hospice ASAP!

If the palliative care team have got his pain under control with morphine, then he surely should be able to be moved?

It's no good ward sisters/docs giving you vague info on what is on your dads notes, you need to speak with the person who knows what is going on ( oncologist ) and get them to sort out the next step.

I know it's frustrating and upsetting, but so is being told your dad has a week or two left? It's not on.

I'm thinking of you, hope you get some answers

Xxxxxx

[poochy76]

Dad was moved to the Hospice this morning thankfully. He currently has a side room to himself and hope it stays that way as he should have much more privacy now. I haven't seen him there yet, will be seeing him the afternoon. Have managed to get time off of work now so plan to spend as much time as possible with him - hate the idea of him being on his own and can't expect my mum and my sister to do this on their own - they have been seeing him twice a day and I've only managed once a day - usually after work. But have used a few days holiday to spend the day with him in hospital.

I'm dreading seeing him in the hospice today, it seems so final. Not sure how aware Dad is of this, but my sister told me he was quite upset this morning when he was leaving hospital. God I can't imagine what he must be going through.

I don't know if we had any more feedback from the hospital before he left. And I wonder how much we will get from the Hospice - not sure how my medical intervention, if any, there will be in there?

Need to find out about the bleeding, and whether this will be the thing that sees him off - and how this causes death - will he have a heart attack, stop breathing - not sure what lack of blood will result in. Guess I may have to rely on the internet for the time being to answers these questions.

Need to appreciate that Dad is still here, even if it is for a short time. And we will have time to say goodbye to him. Decided to tell him the name of the baby - we are keeping it a secret for everyone else. I'm not a religious person, but hope that whatever there is after death he will be able to see how things turn out.

[PCUK Nurse Jeni]

Hi Shelley,

I am sorry to hear about your dad, but it is great news that he has been moved to the hospice.

Just to clear up one point about what consultants say or don't say -legally, they are not allowed to discuss anything about the patient with other family members, without first getting witnessed permission from the patient. This could be verbal or written -in fact verbal is fine. Once this is clear, then the patient does not have to be present if their health is discussed. However, they are not permitted nowadays to "withhold" information from patients, so asking them not to tell a person more bad news is not good practice for them, as the patient needs to be fully informed of what is happening. It is difficult, and so different from years ago where the patient was told hardly anything.

In terms of the hospice, there will be such fantastic care there. The environment will be so different to the hospital -more peaceful, and slower pace. They are experts in treating the whole person -so don't just focus on a physical ailment. They also provide some alternative therapies, which might help your dad to be more relaxed and peaceful. They are also experts in keeping a person pain free, and will try their best to do this for your dad. Any symptoms he has will also be monitored eg: nausea, constipation etc...He will have his dignity as a priority, and be as comfortable as possible. Most patients and their families are very impacted by hospice care, and it is a good place for your dad to be for end of life care. What is important is that the staff there will make it bearable, and will be a support to the family also.

It is really sad that your dad wont get to see your baby. I am sure he would have cherished that.

Kind regards,

Jeni.

[lynbo]

Hi

Your dad will be feeling nervous, but, I am sure after a day or so in the hospice he will be more relaxed. Just go there, sit, talk, don't talk, just be there, i know they do a fantastic job.

My husband never got to the hospice, but, I ho to our local one for counseling, and there is a certain feeling of calm in the place.

They are all friendly. I hope you spend some quality time, a few days off work is the best as you also sound stressed, understandable.

There is nothing you can say, as your dad knows you love him, and visa versa, so just cherish, and stay strong.

Love to you all

Xxxxxx

[laura]

hello shelley, just to let you know i am thinking of you, your family, and of course your dad,am so pleased dad has been moved to a hospice, it will be so much nicer for all of you , though you won't realize that now perhaps. make the most of each day you all have, things could well look up for you now, its something we should all do really. but untill something happens to bring us up with a jolt we tend not to acknowledge how precious time is, Take care dear, be kind to yourself, Love laura xxx

[poochy76]

Dad passed away last Sunday morning.

As soon as he got to the hospice he went downhill quickly. It was difficult to accept that the hospice treatment was to let nature take it's course and only to treat Dad with pain relief. He was on 60mg of morhine via the driver. For the first couple days he used all of his strength to maintain his dignity and use the bathroom himself - but it was too much effort in the end and they catheterised him on the Friday afternoon. He didn't really say much whilst he was in there.

On the first evening he was there he could still open his eyes and say the odd word. My husband and I chose this time to tell him our baby's name - god that was so heart-wrenching as he must have known that he didn't have much time left. He was so brave though - I hoped the morphine took away as much of his fear and heartache as possible .

He soon lost the ability to swallow so on his last day all we could do was moisten his mouth, moisturise his lips and try to make him as comfortable as possible.

We played all of his favourite music, read to him and took turns holding his hands. It was the hardest this I have ever had to do. We thought he might go Friday night so said our goodbyes to him then - but had to do it all again saturday night. We had spent all day with him again - My Mum, Sister, my husband and I. We decided to leave him to go home to bed - although the Hospice would have allowed us to stay the night. I still don't know if it was the right thing to do. Mum was adamant that we had to go, and that Dad would want us to - but I wan't sure. We were all mentally and physically exhausted.

I still don't know whether I did the right thing. The hospice thinks he died around 5.30 on Sunday morning - so I would have been with him all night. Maybe I would have fallen asleep to find him dead next to me. Maybe he would have said something, or convulsed or something? I just hate the thought of him dying alone, in a strange place.

When we returned to the hospice to pick up his things and the cause of death certificate it was stated that he was last seen alive on the Saturday night - I didn't dare ask at the time - but did that mean that no-one checked on him until the morning? We had asked for a nurse to keep moistening his mouth to keep him comfortable - not sure if this happened.

Still can't believe this all happened in just over three weeks. His funeral has been booked for next Thursday. It does help to keep busy, and to keep thinking about how he would want you to feel. We've been looking after Mum all week, trying to support her, keep her busy, organise all the paperwork and funeral. I worry more about how life will be for her after the funeral. They did everything together, Mum relied on Dad for so many things. I just want to look after Mum as Dad would have.

I know things will one day get better and less raw. But he has left such an awful gaping hole in our family. He was so loud, funny and caring. He was 70 years old, but still had more energy than all of us put together. I can't believe he just not here anymore - and don't know where - if anywhere, he has gone to.

[AnneD]

Dear Shelley,

I'm so sorry to hear the news about your wonderful dad

and how everything happened in such a short time.

Sincere condolences to you and your family at this sad time.

Anne.

[john27]

Dear Shelley

After just reading your posts I am so sorry to hear that your Dad passed away. He sounded like a very dignified man.

My thoughts and heart go to you and your family.

John

[lynbo]

Dear Shelley

So sorry to hear about your wonderful dad, my thoughts and prayers are with you all.

Please try not to analyse what if you had stayed etc, I know it's hard not to, but you did everything you possibly could, I was the same when my husband passed away, I replayed the morning over and over and questioned myself many times.

You will get over this part, supporting your mum and helping with arrangements is the best thing, she will need you to support her.

Then - maybe you could put her name down on the bereavement counselling list? I waited 14 weeks for mine, but it helps?

It's all a big shock, I know - my Andy was 7 weeks from diagnosis.

Lots of love to you all

Xxxxx

[PCUK Nurse Jeni]

Hi Shelley,

So sorry to hear the news about your dad.

Thinking of you.

Jeni.

[CFF]

So sorry to hear about your dad Shelley.

We are all struggling to come to terms with the timescales of 6 months and then I look at this website and realise some have such painfully short amounts of time with their loved ones - my heart really went out to you when I read your story.

Have also been struggling with the fact that it will be unlikely my dad will see me married or with a baby.

I'm sure your dad knew you were happy and it was a lovely idea to tell him the name of your child.

Take care of yourself. Agree would try some counselling even if you're not sure you ned it right now.

xxx

[ali]

hi i also have just found this web-site 2weeks ago and joined on sat 25th june and posted last night--0n The family/friends/carers site--please read of my mum's experience

Ali

[lynbo]

Dear Shelley

How are you? Been reading old posts and I hope your ok

Xxxxx