[ed-209Participant]

I know the subject is not what everyone wishes to know but my mother has had a bone marrow test and the hospital said there is nothing else they can do so she is having a palliative care at home, sad times for all I guess, but what I would like to know is time scales of this?
It is no treatment but comfort aye, so it could be a odd question, anything like how long is a piece of string.

[finnParticipant]

I am so sorry to hear that Stu. Is there really no other treatment they could try (Daratumumab, Pomalidomide, Carfilzomib)? I guess it is inevitable at some point to all of us. My thoughts are with you

[ed-209Participant]

She went to Winchester and then Basingstoke, never got a chance to speak with Dr Jenner,

The hospital said the type of Myeloma she has they only see maybe once every 2 years.

[tmcintyreParticipant]

Hi Stu,

I am sorry to read your update. Do you know the results of the bone marrow test? My husband had 50% abnormal cells in his bone marrow when diagnosed and it was still 50% after his induction treatment of Velcade. Dr Jenner obtained a trial drug for him which then got him ready for SCT.

I remember your mum had Acute Kidney Injury – did the hospital help her to recover from this? Have they given you any indication of timescales?

Dr Jenner told us at the beginning that Myeloma is not curable but very treatable. Could you ask your mums GP to refer her case to Dr Jenner for a second opinion.

All the best
Teresa

[ed-209Participant]

Hi, I am not sure what the results of the bone marrow test were, but she left the hospital 2 weeks ago and was told she had 2-7 days left, she is still here but the chemo has stopped, the hospice has been round with palliative care and they are giving her a little blood from time to time and steroids.

I think it was a little negligence by Winchester hospital but I guess we will never know, as they did not monitor the kidneys and the chemo and the myeloma that was pretty far gone when diagnosed has damage the kidney beyond repair maybe, yet they did not offer dialysis or anything.

I believe the kidney function is currently as low as 3%

She has been very cold and shaky.

[tmcintyreParticipant]

Hi Stu,

Such a bad time for you all. Are you able to wrap your mum up and sit her in the garden to enjoy a bit of sunshine. She must be a very strong person, I hope she is pain free,

all the nest
Teresa

[ed-209Participant]

She is still alive, they were talking about putting a Syringe Driver into her.

Is a funny story, she sees Dr Jenner now and he seems really good and has arranged for her to have kidney dialysis, well the GP phones today and said she needs a syringe driver it is all really confusing as I thought a syringe driver was given at the end of life but Dr Jenner has sorted out this dialysis so one day things are up and the next they are back down.

No one really knows what is going on, hopefully she lasts until her next appointment with the Myeloma Doctor.

I think the NHS is in trouble, with communication mainly, seems like a lot of people do there own thing and no one is accountable.

But thanks for sharing, shall also share progress as it goes on.

[patsyannParticipant]

Hi Stu

A syringe driver is usually used to control the amount of pain relief given. It saves the patient having to have regular injections or pills. It does NOT necessarily mean they’re thinking end of life. My husband had one while he was having his SCT 4 years ago and again when they changed his pain medication last winter. I’ve been following your story and it all seems a bit puzzling so I can’t comment on what’s happening with your mum. The fact that an expert haematologist is now involved in her care, and that she’s still fighting both seem positive though. While there’s life there’s hope.

Pat

[tmcintyreParticipant]

I’m so glad that Dr Jenner is looking after your mum now. He is a “facts and figures” kind of man so may come across a bit unsympathetic but his approach suits us.

Sending best wishes to your mum, she sounds amazing.

Teresa

[ed-209Participant]

Thanks, and thanks Pat that is reassuring, we all thought, I think most people do think that the syringe driver is pretty much immediate death, and when you still have your mind in full function it must be quite a horrid thing to be told.
Shall keep you posted, she is in the Renal unit at QA and shall see Dr Jenner on Tuesday if the lord allows her to still be with us, she told me she think she may have had a heart attack last night, and I do know women can have heart attacks in there sleep and not even no about.

But shall let you know how it all goes. Hopefully better news on Tuesday.

Peace and Love all.

[patsyannParticipant]

I hope so Stu. But I’d have thought someone should be keeping your mum, or you, informed about what’s happening and why. We were told when my husband had the syringe driver what it was for and why they were using it and have always been encouraged to ask questions or raise any concerns. All the best for Tuesday.
Pat

[tmcintyreParticipant]

Hi Stu,

How is your mum getting on?

best wishes
Teresa

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