Palliative Care

[jobby29]

Back in May my mother had an ultra sound after suffering from what she thought was a tummy bug, she was then sent for ct and mri scans, and in mid july we were told that she would need the whipple procedure as she had a tumour in the head of her pancreas,but would need to be built up for her op( she weighed at the time just under 7 stone). After 8 weeks on a drip feed and putting on no weight what so ever we we're told that she isn't strong enough and that she would not survive the operation, chemo wasn't an option. They did tell us that her pain would be managed.

Yesterday we had a visit from our local hospice, the doctor was great telling us that if my poor mother wanted to stay at home everything will be done to see that was made possible. he also said that her drip feed could stop as it not doing anything but for the time being we have decided to continue with this. She is out of it on morphin and she seems to be going down hill daily, i really dont know what to do or say. My father is her main carer and it heart breaking to watch him watch his wife of 50 years and our mother die. The doctor told me it would be weeks rather than months, but how does he know, how will i know when she is leaving us. I lay with her today and although she is asleep she is restless her breathing is very low, she is moaning and very hot one minute cold the next. she also talks to people that aren't there. she hasn't eaten for 2 weeks now and drinks very little. Has anyone been through this, is she dying and if so how long do you think she will be with us.

[Anneli]

I've just read your story and my heart goes out to you and your family. My lovely Mum died on the 10th August this year after suffering from pancreatic cancer for 8 months. Her cancer was inoperable and she was always too weak to be given chemo, and she tried really hard to put on weight but she almost came to resent food in a way as she couldn't enjoy anything and was sick a lot of the time. Her last month was spent in hospital in Leeds as she was suffering from a build up of abdominal fluid which made her really ill and uncomfortable. On her last day she was very weak but was able to chat, and was due to be moved to a hospice in the next couple of days, but after we left her that evening she deteriorated very quickly. Thankfully we were able to get back to the hospital in time to be with her when she passed away and the end was very peaceful. The only thing I can say to you is just be there as much as you can for your Mum and don't let this distructive disease make you a victim like it has your Mum and my Mum. Try and keep strong but don't worry if some days you feel like crying all of the time as this is normal! What I still can't understand is why PC seems to pick on healthy, fit people? Hopefully someone soon will find a link and put an end to this terrible disease.

Anneli

[rosieh]

Hello

I am so sorry to hear about your mum. Last year my dad passed away 5 months after being diagnosed with pancreatic cancer. It is difficult to say exactly how long anybody has left to live as everybody is different. However, there are things that tend to happen in the final weeks and days which are common amongst all terminally ill people.

My nature is to want to know what might be coming and so when Dad was ill and started to deteriorate I did a lot of research around "end of life" and I have attached links to some of the best websites I came across at the time. If you don't want to know the detail, don't click on the links - the sites are factual but also sensitively written.

http://www.hospicenet.org/html/preparing_for.html

http://www.hospicefoundation.org/endOfLifeInfo/signs.asp

http://www.hospicepatients.org/hospic60.html

http://www.cancer.gov/cancertopics/factsheet/Support/end-of-life-care

Like Anneli's mum, my dad's passing was peaceful and calm, and we were able to be with him.

I wish you and your family strength for the coming weeks and months.

Jan

x

[jobby29]

Thank you so much for your reply, hearing from someone that has gone through the same thing helps alot. My mother seems to be going down hill daily, she sleeps most of the time which is scary as her breathing is laboured and she crackles. When she is awake she is very confused, she often sees and talks to people we cannot see, the next view weeks/months are going to unbareable

[aitch]

Hello,

My 61 year old dad died on 29th August of pc having been diagnosed in January. He died in our local hospice and was peaceful at the end. During the last 3 weeks of his illness dad felt most comfortable at the hospice. The staff from senior consultant to housekeepers were wonderful. As a family we could not have asked for better care. The hospice staff looked after not only dad but the rest of us as well. For most of the last week of his life there were at least 6 of his family at the hospice, we were cared for too. The Palliative Care Teams are so helpful and caring and professional that Dad's passing was made easier for us all.

Some 5 weeks after dad died, the hospice are still in contact with mum and offer her continued support. I know that some people would rather spend their final days at home, but despite the fact that dad was terribly upset about going into the hospice, once he was settled he said he would rather be there than at home. Certainly my mum was much happier with him being there. His condition had deteriorated and the cancer had spread to his stomach, he was in severe pain, and his stomach stopped working completely. The hospice staff kept him comfortable and pain free.

H

H

[rosieh]

Hello to you all

jobby - there were a couple of occasions where my dad also saw and spoke to people who we couldn't see. He also did get confused toward the end - he would ramble a lot about things that didn't make sense to us. I think that is due to the changes in the body's metabolism - I found it a bit scary at first but once I understood what it was I wasn't frightened at all.

I read an excellent book called "Final Gifts" which helped me understand some of the things that happen at end of life. I've attached a link in case you're interested. It helped me cope a lot better.

http://www.amazon.co.uk/Final-Gifts-Kelley/dp/0553378767/ref=sr_1_1?ie=UTF8&s=books&qid=1223625621&sr=8-1

Thinking of you and your family.

Jan

x

[jobby29]

Thank you all so much for your kind words and support, my poor dear mother was taken into hospital after what we think was a stroke on Tuesday 14th October, she had lost her speech and was very scared, she was made comfortable in the local hospitals palliative care ward and she passed away on Friday morning peacefully after a 6 month battle, i cannot belive how this terrible illness can take someone so quickly and savagely, my only comfort is that it is all over for her now. My thoughts are with everyone going through this heart breaking illness.

[lorraine]

Hello

Iam so very sorry to hear about your mother,my thoughts are with you and your family.

Take care

Lorraine x

[jobby29]

Hi Lorriane, Thank you for your kind words, this is such a difficult time. I truely hope your Father continues to do well. Thinking of you and your family.

Barbara

[rosieh]

Hi

I'm sorry to hear about your mother, it is so sad. I really feel for you all and I am thinking of you.

Jan

x

[dorabcoelho]

Hey Barbara,

Hope you are well. Your story is so much like mine!

My mum lives in Brazil and she was dignosed with PC in July when I was there for my holiday!

Although she was visiting doctors for a couple of months, complainning about gases, diharrea, weight loos and not controlled diabete; only in july she found out what she had1 ( I mean we never told her untill we really understood what was happening to her.

The oncologist said that there was nothing they could do and we should just give my mum bucopan and some other medicine for gases.

I coldn't just take given mum buscopan everytime she said she was in pain!!

I decided to take mum to a private doctor who said she would have to go for an operation which would elp her to digest food otherwise she would be yellow and not able to eat at all.

Dr Ricardo said she was fit for the surgery and he has been looking after her with another 2 doctors ( oncologist and endocrinologist) who are treaating her so well.

Of course she has side effects and it is been hard specially because I am in London so far away from her.

If we have listened to the first doctor my mum wouldn't probably be here no more!

She is now reciving the chemeo treatment and she feels evry weak sometimes, but she is fighting it back.

I think there should be a way to diagnose this disease quicker than it normally is, so patientes could have a better quality of life.

all the best for you

Dora

[mel72]

Ito lost my previously fit and healthy mum to pancreatic cancer in January 08. She had the whipples surgery but unfortunatly there were microscopic cells that her surgeon could not remove.We all miss her so much and still cannot believe she has gone.This year has been so hard because every date means something to us and the memories are so vivid. Just take one day at a time and there will be days when you just cant get out of bed and others when you feel ok. If I can be of any help please chat it does help.