Emotional Impact of Consultant's Letters

Hi all,

Firstly, wishing everyone on here much love and strength. I am my mum’s carer and she has n-h lymphoma DLBCL. I was recently told that her lymphoma has transformed to high grade and I had a telephone consultation with the consultant to discuss this. I asked the consultant about time lines / aggressiveness of the lymphoma and was told that it could be 2-3 months. I interpreted this to mean that this was how quickly the lymphoma could spread/ worsen. I didn’t tell my mum because I didn’t want to worry her and for her to just focus on that.

A letter was then sent to my mum in which the consultant has written that her prognosis is a life expectancy of 3 months.

I was appalled that something like this is put in writing. Has anyone else had this and if so, have you spoken to the consultant about it/ what was their response. I am due to speak to him on Thursday. Unfortunately, I also have a nurse who is unhelpful and tries to refer me to palliative care for everything and just wants to avoid trying to deal with my queries!

Thanks very much.

Hi, sorry to hear about your recent experiences and your mums disease progression, a couple of comments - what has been done cannot be undone unfortunately and it sounds like the consultant whilst think he was being clear with you, they don’t seem to have checked you understood what was being said, as consultant speak is very different to normal speak. Also no one can ever say how long someone has as it is always an unknown, even with advanced disease that may not be being treated.

My advice would be have a chat to the consultant and ask all the questions you need to and double check your understanding of what is being said. Query what their role will be going forward and who will manage and be responsible for your mums care and the care or treatment decisions to ensure she remains pain free.

This will be a lot for you to get your head around so if you can, ensure you have support to, a good starting point may be the GP to ensure they are up to speed with your mums situation as they have a key role in the coming weeks and months.

I have some experience of navigating support and help so happy to offer advice and my experiences if it helps, just post your questions.

Take care
John

Thanks very much John - very much appreciated. I agree with you, what’s done is done and I would rather focus my energy on mum. I will feedback to the consultant so that he is aware of the impact this has and hopefully this will steer his future correspondence in a more positive way.

I will ask more questions of the consultant and to double check my understanding (I have written these down in readiness for my conversation on Thursday :slight_smile: ) - I think at the time part of it was being in denial and the shock of this. I guess I didn’t have any meaningful questions/ they were dwarfed in comparison to the very real situation unfolding before me.

Unfortunately our GP has taken a very backseat in everything and at one point told me that the letter from the renal consultant was too long for her to read and whether I could just summarise what it is that needed to be done.

Mum has an excellent renal consultant who has been very supportive and in fact referred mum to palliative care for pain management.

I feel very much in limbo between the different healthcare professionals - GP surgery always asking for blood test results and who deal with ongoing medicine queries/ Pharmacist keeping up with changes in medicine, giving us the correct medicine/ Palliative Care and symptom management/ Haematology/ Renal - it’s like they don’t all talk to each other and I’m the one in the middle trying to keep everyone on the same page. Have you ever been in that situation/ seen it and do you have any tips on how best to navigate? I spend a lot of time and energy whinging to however will listen about the latest irritating conversation I’d had to have with one of the above to get heard/ action all the while trying to make sure mum is comfortable.
Thanks again for taking the time to come back to me - it just helps having a sounding board as I’m very much a ‘fix it’ sort of person :stuck_out_tongue:
All the best
Zahra

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Hi, consultants and departments not talking or no one department taking the lead is the norm in my experience, you do have to do what you have been doing, all part of how the medical world functions and in some cases ego’s are managed.
As your mum moves to palliative care GP’s and district nurses can play a pivotal role and the palliative care team may help smooth the way and link you and your mum into a hospice.
Try to get to a position where you are able to split your time between caring and being able to have some quality time if that’s possible and ensure all that needs to be said is and make as many good memories as you can in the remaining time.
here to listen when you need it

John