awful time

[claude]

hi my name is claude and i've been meaning to post for some time now but wonder where to start. My mum is 67 and had a whipples operation 3 years ago and a course of chemo for cancer in her pancreas. Last may we were told that the cancer had returned at the site of the clips used in the operation and there was no cure this time. She was given 4-6 months to live and had a course of pallative chemo.WE had scan results 3 months ago and the cancer has so far not spread to any other area.We have a scan again today with results next Thursday.we set ut making some special memories but have had some close calls with infection and fluid in her lungs.The main problem now is that despitetaking co-codamol,oxycontin and oxynorm liquid mum is regulatly crippled with pain especially after eating.The doctors don't know if this is a digestive problem from the whipples or just the cancer.This has lead her not to eat just having forte drinks and the occasional jam butty of all things. Up until now my mum has been very positive and wanting to live and fight but the pain is wearing her down.She is now talking funerals and death and even brought me a leaflet from the hospice yesterday about what it may be like in her final few days.I know i shouldn,t be selfish and that she is suffering but i just can't imagine not having her around.Has anybody had similar experience of pain after eating or any ideas on how i can make her more comfortable.I know that she needs me to be strong and needs somebody to talk to about her death and fears but truthfully it hurts so much.I can't even sleep now as i'm scared to find her dead in the morning.This really is an awful time and i'm so scared of what to expect and when the end will come .Any help and advice would be appreciated thanks claudex

[rosieh]

Oh Claude I do feel for you. I have just lost my dad to Pancreatic Cancer and it can be a very scary experience to know what is ahead of you. I'm trying to think about the things you've posted and help you.

Firstly, regarding the pain, my dad never had any (I know, he was blessed) and he never had any treatment (diagnosed in March this year and passed away yesterday). So I can't really help with that, however your Macmillan Nurse (if you have one) should be able to work with you and your mum's GP to help with pain control. Sometimes they advise a short stay in a hospice to get all the symptom control right.

My dad was 68 and from the point he accepted what was going to happen (and he did) we were able to speak openly with him about making him comfortable and caring for him and enjoying his last months. We achieved all of this despite him being bedridden since March (his legs just seemed to stop working) and suffering horrendous pressure sores. I know it's tough, but if your mum wants to face up to this, then I hope you can find a way to deal with it. I think it makes it easier if she is being as she is - it isn't giving up at all, just reconciling herself with what is ahead. The best thing you can do is support her and not try to fight against her wishes. Make it easy for each other, is my advice. Then you will truly treasure your time left together, and not end up resenting what is happening.

I know all that is easy to say, but being positive with my Dad, even when helping him arrange his funeral, was the best gift we could give him on his final journey. He really appreciated it.

I understand you about the sleeping and fearing the end. I've been there, too, but our experience with Dad's passing was peaceful and beautiful. Your mum's care team should be able to make her very comfortable. Personally I found that Googling about this type of thing helped me read up on end of life and reassure me that it was nothing to fear. One of the best sites I found was:

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

In addition, if you have any concerns about this, your mum's GP or Macmillan should be able to explain to you what is likely to happen. They also should be able to tell you when the end is nearing. Barring anything untoward or unexpected, most people with this condition will follow a similar pattern.

I also recommend a book called Final Gifts

http://www.amazon.co.uk/Final-Gifts-Kelley/dp/0553378767/ref=pd_bbs_sr_1/202-7761173-2019834?ie=UTF8&s=books&qid=1183045334&sr=8-1

Again, this took a lot of fear away from me. I was always very afraid of death - my own and other peoples. My experience in the last 5 months has taught me so much.

I hope you can find your way through this Claude. I wish you the strength to do so. Keep posting - this forum helped me so much.

Take care

Jan

[claude]

hi jan

thankyou so much for the reply.I'm very sorry that you and your family have had to go through this experence.Your father sounds like a very strong and wonderful man.Your acount of hs passing has helped me tremendously it sounds as if it was peaceful and painless just as i would like for mum.

I feel alot calmer now for just writing down my fears i showed my husband the post as i hadn't been able toexplain my fears and at least now he understanda how i feel.I am the strong one for the family i never get upset and sort everybody else out so i think it was timefor my little meltdown.I have read the advice on the link you sent and ordered the book from amazon thankyou its sounds just what i need.

Unfortunatley my mums macmillan nurse has been off sick for months so she cant help us.The hospice have offered mum a pump for pain releif but she doesn't like the idea so they are having another think.I'm going to see the hospice doctor with her on Wednesday to see if i can sort anything out.

I am struggling without sleep and i have young children and a lot of pressure as mums carer she needs a lot of help now but doesn't like the idea of strangers doing things for her ie district nurse.I know if i told her i was finding it hard she would accept help but i want to look after her myself so i just have to put my life on hold for a while.I think the way i will get through the end is by telling myself that i did everything i could for her.

thank you again its comforting to know i'm not alone and that other people have got through the experience in one piece.

I'm going to take one day at a time and treasure every minute i have with her.I've been very lucky to hav ethis 12 months with her even though thay'vr been hard.We had some good times we went on the orient express and hired a castle in scotland for new year.we made some good memories.She is a wonderful mum and grandma and its so unfair just as she should be enjoying her retirement.

thanks claude x

[Tara]

Hi Claude,

I lost my Mum to Pancreatic Cancer on 4 May this year, i really feel for you and your family and hope that you can get the help you need in the future.

I wish i had found this forum a little bit sooner - i agree it does help to write things down - i am also the "sorter" inthe family and felt for a long time that i had to be strong and not show how devastated i was, i think it's easier to 'speak' to strangers here than explain to family sometimes.

Thinking of you.

Tara.x

[claude]

hi tara thanks for the message of support.

I'm so sorry to hear about your mum it must be a difficul time. How are you feeling now?It sounds as if it all happened quite quickly. Its difficult to know which way is harder on one hand at least i've had time with mum to make some special memories but i've also had to see her suffer for ever such a long time now. Its just so difficult to be strong for everyone but I think this has made me strong i'm more assertive as i've always been quite timid and shy but not now.I had a strop yesterday as the hospital rang and said mum needed and emergency ultra sound scan but wouldn't say why.Mum was in tears and wanting to cancel our holiday as results may take a week.Any way i eventually put my foot down and insisted a doctor talk to us .Apparently there is some swelling around her kidneys they are concerned about but at least now we know and aren't guessing or fearing the worst.

Anyway i'm rambleing.I hope your doing ok and your mum didn't suffer to much.It was nice to hear from you as you say its hard to talk to family as i don't want to upset them so here is where i get everything off my chest.

thanks again claude

[rosieh]

Hi Claude - just wondering how you were doing and if you got to go on holiday?

Tara - I am sorry to hear about your mum. I find writing this down helps me, too. In fact, I started a blog when my dad fell ill. I don't know if I'll ever read it back, but it was a good place to dump my thoughts and feelings - stuff I couldn't say to certain family members.

Jan