Confused - End of Life

My mum has had non-Hodgkin lymphoma for 21years & malt lymphoma for 9 years, she finished her chemo in April 24 as it had made no difference. She has been ok. In the past 2 months she has had high calcium and a number of falls. We now find ourselves in hospital after a fall with high calcium which they had been treating. The Drs have spoken about end of life. This is where I am confused, since the chat my mums calcium level has dropped ans she is currently not having any fluids, she is very alert, talkative, eating more not what I expected if she is nearing the end of her life. So I’m thinking she’s getting better but have I got it wrong and gradually she will become unwell again but they won’t treat her and will let nature take its course. 

  • Hi MaryCE 13, and a warm welcome to the forum, I am sorry to hear your mums chemotherapy hasn't helped, it's good to hear her calcium levels have improved and she's doing better. As someone who used to work in palliative/end of life care, and who is now on it, and for over a year, my understanding is it refers to the care for anyone with a life shortening illness, up to 1 year is often mentioned, but as we know there is a lot of guesswork with any prognosis, your mum sounds like a strong resilient lady. my best wishes to you both.

    Eddie

  • Thank you for your reply, sorry to hear your news. Yes the wording is very confusing, my mum is a fighter who amazes me all the time with how well she deals with her diagnosis and everything that comes along. I’m going to be taking it day by day. I wish you all the best. 

  • Thank you, Mary, but I'm doing ok, and hopefully for some time yet, as I hope is the same for your amazing mum, every day is a new day,  works for me,  best wishes.

    Eddie xx 

  • Hi MaryCE13 and thank you for posting,

    I am sorry to learn of your mum's situation this must be a difficult time for you all.

    It is good that the calcium levels have dropped and your mum is at the moment feeling better, but I can appreciate this is confusing for you.

    It sounds like the doctors are no longer treating the cancer itself but they will continue to manage your mum's symptoms such as high levels of calcium. Unfortunately, the calcium levels may become raised again and as the cancer progresses she is likely to become unwell. I am sorry and I appreciate this may be difficult to read.

    It would be best to discuss this further with the team looking after your mum. They know her situation and can discuss with you how they will manage any future symptoms.

    I wondered if your mum has been referred to the palliative care team. These specialists manage symptoms and can provide emotional support to your mum and family.

    Palliative care/ Macmillan nurses are involved in the team if this has not been done already, your mum's specialist/nurse specialist or GP can make a referral on her behalf. They can be both hospital and community-based.

    I hope this reply is useful. If you would like to talk things through with one of our nurses on the helpline, the freephone number to call is 0808 800 4040 and we are available between 9am and 5pm Monday to Friday,.

    Take care,

    Jemma

  • Thank for your reply. Yes mum is under the pallative care team. As you have mentioned her calcium levels have started to go up again and she is on fluids along with a drug called denosumab. The pallative care team have explained it to me as you have, still very hard. Her ward is now closed due to the virus, so all the more upsetting as I can’t see her and I know she is starting to go down hill again. 
    Thank you it is good to chat on here.