Question re time in end stage

[Staystrong]

Hi. This is my first post on this forum. As I type I know I should be asking this question to my mums team.

My mum was diagnosed with pancreatic cancer almost 5 years ago, since then she had surgery, chemo, recurrence and numerous chemo interventions until autumn 2017 when chemo was no longer an option. She is at home, pain is significant but mostly well managed and meds are reviewed often. She is able to do very little due to sob / fluid on her lungs. Something we've never asked team specifically is regarding predicted time as from time of diagnosis that is not something she wanted to 'have hanging over her'. At this stage I feel I need to know an estimate, I want to spend every moment possible with her but also have everyday responsibilities which I need to plan around. With some idea I could speak to my employers etc. Thanks for reading. I really need to speak with team don't I. My mum is happy for me to do this but she doesn't want that discussioj at least not just yet. Heartbroken

[Marmalade]

Dear Staystrong,

I'm so sorry you find yourself on here but heartened to know your Mum has already beaten the statistics for survival by a huge margin, she must she must have had great strength and good support from you all.

I know how hard it must be for you but sadly no one can tell you how long she has left. The professionals caring for your Mum may have a better idea based on how each of her organs is currently performing but even then there is no guarantee. We know that without treatment the average prognosis is somewhere between 3 and 6 months but so much depends on other factors, whether she has other medical conditions, the state of her immune system, where the cancer has spread and so on.

I think that you should put your cards on the table with her GP and rather than ask how long she has ask if it is time you took some time off work to be with Mum?

There is also another approach, to be with your Mum while she is still able to talk with you and know you are there and enjoy your company by taking some compassionate leave now. Whatever happens later on you will have spent some quality time with her when she was able to enjoy it. Being with someone at the end is a privilege and for some a vocation but those who provided diversion, support and loving care along the way also perform a very important and much needed role.

Much love,

Marmalade xx

[patrigib]

Hello

My husband was diagnosed stage 4 sept 2014 with life expectancy of 6 - 12 months. As his nephew died of the same desease 2012 at the age of 42, and only survived 6 months post diagnosis, I took a 7 months leave.

Now it's 2018. I took 2 weeks this January as being so exhausted; yesterday my husband was very poor with high temperature and I was very worried, had to give him antibiotics. Today I brought him breakfast and dinner in bed. Afternoon he went to have a drink with a friend, came back exhausted and now fights with me. Just to tell you it's impossible to say, unless at the very last stages.

A rollercoaster..........

Hugs

[Staystrong]

Thank you both for your replies. Like you both said it is such a rollercoaster and there are no answers. I've decided as a starting point to take this next week off, more for my own head than anything else and then somehow go back to taking each day at a time and make plans based on how mum is rather than anticipating. Yesterday she was in such pain at one stage, her doctor reviewed her and meds and increased pain relief significantly making everyone more comfortable

Thank you for sharing

[patrigib]

I hope your mother is better with her medication being reviewed. I also think that being a close parent or a caregiver is really exhausting.

I start work again on Monday but will take a leave at Carnival, that will let them time to find someone for the job. I'm soooooo exhausted and I also feel guilty for leaving my husband alone, as he can have a fever, or fall, or whatever at anytime.

So maybe having a week off will give you the opportunity to make a decision without being pushed.

Keep us updated on your mum, hope she will feel better.

[Justamo]

Hello Staystrong, nice to know you but sorry PC has to be the reason. Welcome to Planet PC.

Just 12 days before my husband died he had an appointment with his oncologist. It was a lengthy walk to and from the clinic from the door of the hospital, but he managed it OK. Afterwards we went to the supermarket to pick up some essentials - he stayed in the car, but claimed to be quite comfortable. That evening he ate a helping of pasta and cream sauce, and we discussed ways for him to gain weight so that he could have more chemo. 8 days after this he began the dying process, which took about 4 days. God alone knows how his heart stood the strain, but it did - and he had a heart attack 50 years ago.

As the others have said, it is completely impossible for anybody to judge just how long your mother has left. I completely understand that you have responsibilities outside of PC too, and it's a very tricky subject. Do you have the sort of job where you can bring work home ? Can you swap shifts with somebody ? Can you afford to take unpaid leave ? Have a good heart-to-heart with your MacMillan nurse to see if they have an inkling of how far down this awful path she really is.

I am so, so sorry for you Staystrong, and do hope that the medication review has helped your mum to find some comfort. Stay on this forum, it really will help you.

Love, Mo

[Quickasyoucan]

Hi Staystrong, as others have said it is hard to say. Dad largely gave up eating and was in a lot of discomfort in the third week of March. He had 2 weeks in our wonderful hospice for symptom management including ascites drainage and did recover his appetite for a short period on steroids. He then had 2 weeks in a v nice residential aged care place, returned to the hospice for further ascites drainage at which time he expressed the wish to die there and he was v lucky there was room. He finally passed away on 15 May. My uncle who was 60 and managed 4 years post whipple was actually out with his wife only 2 days before he passed away so did not have a long slow deterioration. I can only add pain management gives better quality of life. Best wishes to you and your family.

[Veema]

When I asked our hospice nurse about a timescale (for exactly the same reason as you), she told me about 4 weeks, so I gave up work...my husband died 4 days later. I don't regret anything, but I would have liked to have spent more time looking after him...we just didn't know, and he was adamant he was going to get better and have more chemo.

It's so hard to say, but something changed in him the day before he died and I just knew it was coming...I can't explain what it was, it was just different. I had a similar feeling when my Dad died...he just sort of changed.

Much love

Vx

[Justamo]

Yes, Veema, I know what you mean by that. On Peter's last day I sensed something very different and asked for "No Visitors". Same with my mother and father. I have no medical knowledge so don't know what triggered off my perception, but I'm grateful for it all the same.

This is an awful situation for poor Staystrong and my heart goes out to her.

Love, Mo

[Staystrong]

Thanks for all the replies. My Mam continues to decline. What a hard ending to a life so well lived. Pain is managed reasonably well, she is so fearful right now and is limiting her choosing hospice where I feel she would be more comfortable. It's her choice and we will respect that as best we can. Can't imagine my life without her and its staring me right in the eyes.

[Veema]

I can only send virtual hugs...many of us have been where you are now and know how tough it is.

Much love and strength,

Vx

[Dandygal76]

Hun, if your mum is fearful and reaching the end stage then they can help with that as well and sedate her a little more or something. Have you told them that she is agitated and fearful as well? We do know how tough it is but palliative care is not just about sickness and pain - it is the whole holistic need of your mum. x

[Veema]

Does your hospice not have a hospice at home service? Might be something worth asking about and it will help you immensely.

Vx

[Staystrong]

My mums battle is over. Devastated but pain free now. It really was an epic battle

[Veema]

So sorry, huge hugs...I hope she was peaceful.

Vx

[Dandygal76]

I am so sorry... one day they will beat this vile disease. May your mum rest in everlasting peace. x

[Christine49]

So sorry to hear this xx

[Justamo]

Really sorry Staystrong. It's awful for you.

Much love, Mo

[patrigib]

So sorry for your Mum!

Pat

[PCUK Nurse Rachel R]

So sorry to hear of the loss of your Mum. She really did have an epic cancer battle, she was so brave going through surgery and other treatments. It's lovely that you were able to support her each step of the way. The other Nurses at the charity and myself pass on our heartfelt condolences. Please do contact support line if you would ever like to chat further.

Kindest thoughts

Rachel R

Pancreatic Cancer Nurse Specialist

Support Team

Pancreatic Cancer UK