[DebsParticipant]

Hi again.
If you call macmillan they should be able to help with a counsellor….and remember if one doesn't work, try another- it's important to have one you get on with.
I have also heard similar things about doncaster. Don't be hasty but if you're not sure your mum is getting the right treatment, and if she can face the journey you are entitled to a second opinion….and to being treated where you want. I travel an hour and a half to my hospital – expensive but worth it. X

[adminKeymaster]

Hilarious

[adminKeymaster]

Do try and verify that she is not being treated because the disease is inactive. Age is only a guide. I was talking to a 72 yr old man yesterday in the dayward who had had a sct last year as it's a question of physical status and he is well and fit (he has lymphoma). I'd definitely get a second opinion indeed the most import mat thing you can do is find the right doctor, motivated, communicative, caring and competent.

Good luck

Nigel

[sandie58Participant]

Hi Amanda
My mum has been going backwards and forwards to the hospital over the last couple of years as her protein levels were too high and they have been keeping an eye on her. When it first started the consultant said if it increased at the same rate she could reach 100 before it got to MM. Then last year she had a knee replacement and two weeks later ended up in hospital very ill with an ulcer bleed. Her haemoglobin went down to 6 and she had to have lots of transfusions. It took quite a while for her haemoglobin to get back to the right level and she is still on iron. My mum is 85 now and diagnosed with definite low level MM. Even so they are not giving her any treatment as her kidney function is good and everything else seems to be ok. So I understand why you are worried that they are not doing any treatment, but as we have been told, they don't like to start it until it is really necessary. My mum looks great and apart from some heart problems and osteo arthritis, is really healthy, and she very rarely has any infections.
I think you have to trust that the Doctors know best. I wouldn't want my mum to start treatment which could make her ill and then cause her other problems like her heart getting worse. She goes to see them every three months and they do fresh blood tests, so we are quite happy to do that. If anything gets worse they have told us they will start chemo tablets. I'm hoping that she can keep her protein levels etc., as they are now, for several more years as I don't like to think of her feeling ill with chemo.
I find it hard to take in that she is at all ill as she certainly doesn't look it, and she has a really good attitude and just doesn't let it bother her. I find it hard to be worried at the moment as it wouldn't do either myself or my mum any good. I think like your mum, it is just good that they have found it at an early stage and will continue to keep an eye on it.
Try not to worry too much. I know they tend to say 5 years but I read somewhere about a woman who had been having treatment over 20 years and is still with us.
Take care
Sandie

[Author]

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