My Dads diagnosis

[allyc1]

thank you Leila, my dad takes pregabalin too. He is unwell with a chest infection and still has pain in his back. He has swollen ankles and the McMillan nurse mentioned it could be a sign of heart failure! He feels so poorly and depressed its just heartbreaking to watch. He is at the local hospice to see the Dr so see how it goes

Alison x

[allyc1]

My dad is still in a lot of pain and the Drs are debating what to do. He went to the local hospice on Tuesday and he hasn't really spoken much since, they were asking him about organising his funeral and would he like to know when it's the end! Why do people have to keep reminding him? He knows he is dying and only has a short time left he doesn't need to be told all the time! I spoke to his palliative nurse and explained this to her and she is going to speak to him on Fri. I just don't understand why it's being said all the time, the poor man's head must be ready to explode, he hasn't said 2 words since and he has shut himself away in the bedroom.

Alison

[Sueoliver]

Hi Alison,

How is your Dad? I'm not surprised he is quiet maybe he wasn't ready to talk about funerals! Some people do not want to discuss it and they should be fully aware of that!

Keep supporting him you are doing an amazing job. It is so hard isn't it so many twists and turns!

I have been a bit complacent recently but came back down to earth again yesterday after my stepfather spoke to me. My Mum is very good at hiding things from me! I suppose it is still that protective mother coming out!

Anyway stay strong and at least we can support each other on here.

Love Sue x

[allyc1]

Hi Sue

Thank you. It really helps to know people understand what your going through. It's the hardest thing I have ever had to do. My sister is taking it really badly and I feel as if I have to be strong. My dad is deteriorating daily and he cannot really eat anymore, he is just having ice cream and yoghurts. He went into hospital on Fri for some fluids and help with nausea as he wasn't really drinking, but I know its getting worse and its heartbreaking to watch.

Thanks again

Alison x

[jay]

Thinking of you all Alison

love Jayne

x

[Sueoliver]

I know how you feel. Stay strong and take care of yourself as well.

Love Sue xxx

[Marieb]

Hi Alison

I don't know what to say other than that I understand how you feel having lost my mum last year. The palliative care was fantastic but it is so hard to watch the person you love deteriorate in front of your eyes, you feel so powerless. Whilst being strong for others, please remember you are important too and allow yourself to release the emotions you need to.

I hope your dad is feeling better, take care X

Marie

[sheena]

Dear Alison I hope you are feeling ok .So hard to watch a loved internecine so sick, please take care of yourself ,love and hugs xx

[allyc1]

My brave dad passed away last night after being diagnosed almost a year to the day, he has suffered so much and has never really being free of pain! He was a fighter to the end and we are glad he is no longer suffering, I thank you all for your support and I wish you all well as I understand what each and every one of you are going through

Take care all my love Alison xx

[Sueoliver]

Hi Alison,

I am so sorry to hear your news that you have lost your lovely Dad. Thinking of you at this very sad time.

Take care,

Love Sue xxx

[Didge]

So sorry to hear the sad news. My Rob had a lot of pain in the last few weeks and it is hard to watch. I hope you can take some comfort that your dad is out of pain. Love Didge x

[sheena]

So sorry Alison hope you are holding up ,sorry your dad suffered ,at peace now xxx

[sandraW]

Alison, I am so sorry to hear of the sad loss of your lovely Dad, this is such a wicked disease, as you say he is now at peace and free from suffering. I am sending you love and strength to you and all the family for the next part of this horrible journey. take care sandrax xx

[Marieb]

So sad to hear if another wonderful life lost to this terrible disease, thinking of you, take care xxx

[jay]

I am so sorry Alison, thinking of you,

love Jayne

x

[PCUK Nurse Jeni]

Dear Alison,

We are very sorry to hear of your dad's passing.

On behalf of the nurses here at Pancreatic Cancer UK, and indeed, the wider charity, please accept our heartfelt condolences.

Kind regards,

Jeni.

[allyc1]

Thank you all so much xx

[allyc1]

I haven't been on here for a while since my dad passed away in Nov 2015.

I would just like to know peoples views on the end of life care of their loved ones. My dad found it difficult to come to terms with his diagnosis, and maybe it was his way of dealing with things,when he was admitted to hospital back in Sep15 he was deteriorating which we all knew as the cancer had spread to his liver. The Dr came in when my dad was in a ward of 4 with no privacy, and started asking him if he had thought about end of life care, where he wanted to be etc?. We said we didn't want to talk about it! My dad struggled to talk about it, maybe thought he had a glimmer of hope and as I said his way of dealing with it. She persisted to talk about it, I walked out in tears and so did my dad. I have never seen him cry, but he sobbed. He had some down of breakdown because of this I believe. He thought he was never coming out of hospital, he didn't eat, constantly asking for reassurance, and he was never the same again.

I have put a formal complaint in, which I did back in Sept also, I was promised a letter from the Dr concerned before my dad passed away, not yet received it, we are in Jan 16 now and I have put another complaint in about the last complaint. I was told they forgot to ask her to write the letter! I am disgusted at how my dad was treat and how unimportant it all is to them.

I would like to know if anyone else has been through something like this? I believe the way they tell terminally ill patients needs to be looked at, each person is individual and some can take the news better then others. I believe they should speak to the families more, they know the patient better then anyone.

I would really appreciate your views on this

Sorry about the rant but I just feel we could have had more quality time at the end, instead we saw my dad so frightened and upset

Alison x

[sandraW]

Alison,

I feel so much for you my love, its bad enough loosing your Dad without having to go through all the extra totally unnecessary hurt, you were all caused, and the fact you have had to wait so long for a reply makes it doubly hurtful.

Trevor, my husband never wanted to talk about dying either, I was lucky and when we were near the end Trevor did ask our consultant's registrar how long he had left, she asked him if he was sure he wanted to know, he said yes and she said he had only weeks, in fact he died 10 days later.

I do always try to look at things from all sides and I suppose the problem for the doctors is they deal with death all the time, and they do have and want to try to give patients the right to die where they want. Its just that some of them seem to be so bloody insensitive, probably because they find it hard to do. I do agree they should sound out family members, and find out what they think about how the patient feels about dying, the other problem is of course, they are probably bound by law to find out about these things. I am quite controlling, I think, and the hospital did do everything through me. The Consultant dealing with Trevor on the ward did asked him if he wanted to know what was happening, this was a few days after the Registrar spoke to us, and Trevor said no but that I would want to know, so we went out of the room and everything was explained to me alone.

As soon as I went back to Trevor he wanted to know what they had said, I toned it down for him, but I think he still understood really.

I hope you get some closure on this, not that anything will change the way you feel, and hopefully by bringing this to the doctors attention, it will make them better at doing this particually hard part of their job.

I still remember when the registrar, told Trevor he only had weeks she had tears in her eyes,and she came back the next evening to see us before she went off duty, and said she had been thinking of us all day again with a tear in her eye, it made me realise its hard for them too.

Sending a big cyber (((hug))) please take care love sandrax

[J_T]

I find totally unacceptable. We had those conversations but in the privacy of our own home. I cared for Ray at home with the help of DNs and Macmillan. It was our GP who broached the end of life subject. Of course it was difficult but she was excellent in her approach.

We did have an occasion when a replacement Macmillan nurse came instead of our usual one. The DN was in the room doing her thing and this Mac nurse started asking Ray all these questions about how he was feeling etc. He said 'can we talk about it later', she persisted, he said 'I don't want to talk about it right now', she persisted. I said 'I don't think he wants to talk about it now' she said 'No, he doesn't does he?!'. I told her to go downstairs and wait. The DN was flabbergasted and said 'she doesn't get it, does she?' - Understatement. I didn't complain but the DN must have mentioned to someone because when our regular Mac nurse returned she knew all about it and said it would be dealt with.

Making it known that things aren't right is imperative imho. Stuff can't be put right unless the organisation concerned knows about the wrongs. Following that I made sure if we weren't happy with anything we let them know!

Sorry you have to deal with it. xxx

[Didge]

Alison, it was totally unacceptable and it is also appalling that you have still not had a reply. I expect they are told that they must ask 'difficult' questions but that is no excuse for dealing with it in this way or indeed persisting at all if it is clear that the patient does not want to discuss it or is becoming distressed. When Rob was in the hospice ward, I remember one of the nurses asking 'if you become very ill, where you prefer to be' and he replied 'do you mean where do I want to pop my clogs?' and she then admitted that was what she was referring to, but it was done sensitively and I know that if he had not wanted to talk about it, she would have left it for the time being. Doctors like the one you encountered need to be told (or retrained!) or they will continue to upset people! I do hope you get a response before too long. Didge x

[allyc1]

Thankyou all for your responses.

I don't know what the answer is, but if my complaint stops another family going through what we have it will be a result.

Will keep you posted

Alison xx

[Guest]

Alison,

I am completely with you on this.

My Dad didn't take his diagnosis well, why would anyone? He was so upset, so often. He was very frightened to die. I do not like Macmillan nurses. I did urge my Dad ( when he was ok ) to get one. He didn't want to, but I sort of forced him to. The nurse that went to his house, asked him if he had planned his funeral, and if he had thought about where he wanted to die.

When we went for Dad's last scan results, the oncologist told us the chemo hadn't been working, but he wanted to keep Dad in to sort out his pain ( he had 3 broken lower lumbar bones ).

While we were waiting for a doctor to come and help, and macmillan nurse came in and said "I deal with palliative care, do you know what that means ". My Dad said no. She then said " I deal with end of life care ". I looked straight at my Dad, and he said " do you know....." He then put his hand to his face and was completely still. She said come on Mr XXX (name removed - moderator) , say what you were going to say, I screamed saying he was having a stroke.

The fright of being told his chemo hadn't worked and then that, hastened his death. That haunts me every minute of every day. I cannot imagine for one moment what that would do to someones mind. I was always very sensitive to my Dad's feelings and did everything I could to help him.

I went to see my Dad the next day in hospital and he just looked at me. He never spoke again, and could only move his left arm. He couldn't even hold his own head. My absolutely wonderful so much loved Dad died a week later.

The fear he must of felt must have been so immense to bring on a stroke.

Leila xx

[allyc1]

Leila

I can sympathise with you so much, that must have been terrible for you. My dad went very quiet and withdrawn, and I guess he just gave up. He wouldn't eat, didn't want to go out, basically he thought what's the point! Which I can see where he's coming from. Why would you fight anymore? When they say you have weeks or days. I like you will be haunted till the day I die. The fear in his eyes, sobbing uncontrollably, I can't get it out of my head. I feel robbed of the precious times we should have had at the end, instead we had all the heartache that the so called Dr caused!

Alison xx

[PCUK Nurse Jeni]

Hi all,

Whilst we are very appreciative of differences of experiences across the country when it comes to end of life care, and indeed, different bedside conversations your loved ones have had with various health professionals, we would like to respond to the current topic.

The truth is, that as health professionals, we also have a “duty of care” towards every patient to make them aware of their situation, what is going on, and what their wishes are going forward – this is why we have things such as advanced directives to help people make choices about their own lives and end of lives. It is also extremely important to help as much as possible, to prepare a person for their death – this is much a part of treatment for every individual. Doing this well can deflect fears and help the person to verbalise how they are feeling, what their main fears are etc….Is is very important that health professionals engage in every aspect of a person’s life, which includes dying, and help them to “die well”.

Whilst this may not want to be a conversation a patient wishes to have at a given time, we also know well that such wishes change from week to week, and this is why the subject can be broached more than once – its not an attempt to make the person feel bad or stressed, its just to “touch base” on the topic, and see if the degrees of openness has changed since the last time. As professionals, we really should be checking this, in order to do our best for every patient. The other thing is, and it may be hard to accept this especially if you are very close to a loved one, but sometimes what folk will want to discuss with their nurses or doctors, they don’t want to speak to family about – and again, we need to create a forum in which they can do this should they want to. This may be because they are scared, and don’t want to admit this to a loved one, or they don’t want to burden a loved one with sad news. It might be too that the health professional relationship can be at “arm’s length” – so, they can “offload” without having to dwell on a topic and also, because to a degree, there is not the emotional attachment from the health professional, so mainly they won’t get as upset like a family member would. (I am not saying HP's don't get upset, as we do - we are human too).

Everybody is different. Having worked in oncology for the past 15 years, I have seen every degree of this. I cannot align myself to a notion where nurses or doctors set out to “deliberately” stress a person out, or cause them upset. I agree there are degrees of communication skills – as there are in every walk of life, and if anything, constructive feedback is the way forward in terms of a learning outcome. Most of this, if fed back in a courteous manner, will be taken on board.

I would also like to make a comment on the below comment on the forums:

“The fear he must of felt must have been so immense to bring on a stroke.”

We just need to be very clear about the causes of stroke – first of all, strokes are caused by either a blood clot obstructing the flow of oxygen to the brain, or by a bleed within the brain. Pancreatic cancer has a high incidence of blood clotting, and this risk increases even more when the person is on, or has had, chemotherapy. There is no evidence that a “fright” or fear causes a stroke. The clotting process is a very complex one, and it does not occur in a sudden space of time, and there is no evidence that “fear” can alter the blood clotting functions such that a stroke is brought on. It is likely this would have happened anyhow, as is so often the case.

As always, we aim to keep a balanced view of whats happening, and aim to provide explanations from clinical evidence.

Kind regards,

Jeni, on behalf of Support Team.