Advise and shared experience with liver cancer

Hi,
This is my first post having just joined. I hope that I might be able to learn more here about what to expect regarding my 80 year old father’s illness. He has liver cancer which has a prognosis of 6-12 months. This was diagnosed in January and is well advanced. He has been taking the chemo tablet Lenvatinib for just over 2 weeks which has left him exhausted and with a reduced appetite which was already low. Alarming ongoing weight loss. Whilst he is quite pragmatic regarding the cards he has been dealt, he doesn’t want to engage with the oncology team about how the illness will progress and what he can expect. I’m mindful that I can’t ask when i attend these ‘speakerphone’ appointments with him. I’m wondering what advice and experience people may be able to share regarding liver cancer and how it moves towards end of life. I would like it that we can support dad in his home to the end but is this unrealistic? Should we expect that dad would need specialist care in a hospice or hospital? Any thoughts or wisdom would be warmly received. Thank you, Stuart

Hi Stu1901
Nothing is unrealistic but you have to get the right care package in place. The pallative care team will be your go to for this as they arrange the hospital bed at home and things needed.
The district nurses are also needed especially for pain control and end of life care.
Cancer research uk will have people that have been or going through this they also have advice from nurses perhaps check it out.
Caring for someone with cancer is not easy especially towards the end as they become reliant on you for everything. This is tireing mentally and physically but worth it if you are able but you may need help from other family members so they need to be on board as well. You could also ask if you could have a chat with the doctors seperately so you know whats going on.

Hope this helps

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Dear Stu1901,

Tillwemeetagain has already given you quite a few useful tips. I would like to add one more: the Macmillan website (www.macmillan.org.uk) offers a wealth of information about cancer in genera l and about specific types of cancer, and lots of support by phone, e-mail or online. I used their chat function last year and found it very helpful.

My mother-in-law was diagnosed last July with stage 4 lung cancer, She was 81 and wanted to stay at home. Her situation was a bit different from your father because she was not offered any treatment but was referred to the end of life care team from the local hospice. The day she received this news she unfortunately had a bad fall causing her to be in a lot of pain and unable to manage the stairs. In hindsight this actually helped to get everything in place to look after her in her own home. She has 3 sons but one lives too far away. My husband works as a carer and I used to be a nurse so between us we decided that at least one family member would always be with her 24/7. Due to lockdown, both my brother in law and his wife and myself were able to work from her home. She also got a care plan sorted, with 2 carers visiting 4 times a day. She recovered from her fall and actually did remarkably well until the cancer progressed. She gradually needed more equipment, such as a hospital bed, commode, lifting equipment et cetera. The hospice at home team was very helpful, always there at the end of the phone to give us advice and helping us to get things in place. As time progressed, I personally found it quite hard to keep going and I was glad that her sister and husband came over from Yorkshire to take over the care for a few weeks so we could all have a break. At the same time, we were grateful that we could grant my mother in law her wish to stay in her own home, in a downstairs room overlooking her beloved garden and with family members able to come and (garden) visit her. She passed away peacefully at the end of November.

I hope that this gives you a bit if an idea of what it is like to look after someone at home at the end of their life. This is not possible for everyone, and personally I think that the next best place would be a hospice. (My mum was in a fantastic hospice the last 2 weeks of her life, my dad had died at home with us looking after him in the last week of his life.) Please feel free to ask me any questions you may have.

Sending my warmest regard to you at this time. I hope you and your dad will still have much time left to spend together and that you will be able to get all the support in place for him and for yourself that you will need.

Jo

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Dear Stuart, my husband passed away with pancreatic and liver cancer. His wish was to die at home. The end of life team came to see him at home and they were able to make him as comfortable as he could be. Once his liver started to malfunction, he went downhill in two weeks. He became very jaundiced and stopped eating and drinking. His stomach became distended and he needed a catheter. He was painfully thin. Thankfully he did not linger in too much pain and he passed peacefully in my arms 2 days later. He was 64 yrs old, fought for 3 years to stay with me. I wish you well, take care Margarita.

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