[FifitrixabelParticipant]

Hi
I have lurked on your old site for a while since discovering my mum is suffering from myeloma. I found you because she (and my dad) are very vague about her illness and treatment and I often find myself knowing more about what's happening than they do. My sisters and I have not been to any doctors appointment etc so information can be sketchy at the best of times!

My mum is 61 and was previously very active. She had a back pain for several months which, after several visits to her GP, physios etc, she paid for a private consultation. Fortunatly the consultant realised immediately and she was sent back to the NHS – within a week she was diagnosed and had started chemo. She has had 6 treatments and at the beginning of October had an unsuccessful stem cell harvest. They will try again at the beginning of December.

We have found it very difficult. I have a very young family (my youngest was born a month before her diagnoses) and my next sisters' are only a few years older. We are therefore unable to be there a great deal and then usually on a practical level (cooking, cleaning etc!!). My mum has been on uppers and downers and is often very negative. It doesn't help that she is a negative person by nature!

Anyway I hope you don't mind me popping on here every now and then
Thanks
Fiona

[meeuuParticipant]

Hello Fiona and may I be the first to welcome to this great site Just like you I had lurked for quite a while before I ventured into posting (a bit like being afraid to step into the water!). I,m sure you have now found, as I have, that there are many wonderful, supportive and friendly people here. There seems to be a common human, caring and dignified fraternity who share this site, and I am particularly grateful that I found it. Be assured that you will get great advice regarding your poor mother's illness from other, more knowledgeable, contributers than me. I,m sure they will be along shortly.
Keep positive and cheerful (especially when you are with your mother).
Regards
John

[brochoParticipant]

Hi Fiona I can understand how difficult it must be for you if your mum and dad dont want to talk about her myeloma, thats what this site is so good at , supporting you and your mum and dad if they want it so carry on posting please . Sometimes it takes a long while for the reality of living with an illness to become something manageable ,so give mum time and she may be more open with you Hopefully the stem cell transplant will be a success this time which will let her see that life is still good even if it is different than before. The other reason they may not want to talk is because they dont want to worry you too much ,especially as you have a new babyTry and be patient with them and dont feel guilty if you cant help as much as you want to I am sure you have your hands full Ant questions you have post on here and there will always be someone who can help . I must admit Idont tell my children everything about my treatment or how it affects me as I dont want their lives to be ruled ny myeloma as well as mine Take care and try not too worry too much love Bridget

[PerkymiteParticipant]

Hi Fiona, I think the initial phases are always the worse in any illness. I failed my first stem cell harvest and then had to wait 5/6 months for the Bone Marrow to rebuild. I had my next attempt a month ago and it went very well. I got 2 million plus out on the first day. That gives me a pool of 3 500 000 for my transplant which, fingers crossed, will start on the 22nd this month. I should add I am 68 so this will be my first and last Stem Cell Transplant,
It must be very difficult for you. I have always been very open about my illness with both friends and family; I email an "update" to 25 people!
I would gently keep plugging away and seeking to discuss it with your Mum and Dad, my view (which I am not saying is the right view just mine!) is that you have a right to know. One piece of key information you should seek is the level of Paraprotien, this in most people is the measurement of cancer cells in the body. For example mine was 33 at diagnosis (18 months ago) and at the last count was 1.8. Your Mother will no doubt have blood tests, before her appointments, they take the measurements of PP level them. If your mother is not asking for this information see if you can persuade her to ask. Clearly you do not want to upset her but asking for that information might just help her to talk about it.
Kindest regards
David

p.s. Welcome to our little group :-/

[FifitrixabelParticipant]

Thanks for your kind responses! I have been able to spend most of the weekend with her (which she enjoys as she finds the children a distraction). I was also able to cook her a good roast which she really enjoys! At the moment her hair is falling out (well virtually gone) and she is very low in a self-confidence way. Prior to her illness she was never openly emotional but now she often cries – this was very entertaining in the early hormonal days of my baby as we were both at it!!
While there may be some things kept from us, most information just isn't taken on board – there is an element of burying their heads in the ground. My parents are farmers and are very practical about many matters but over the last few years we have seen my dad have a stroke at 58 (he is fine now) and my mum's mum died last Christmas (she was living with them and was very difficult). So all in all it has been a jam-packed few years with all the babies as well and I think this horrible disease has been another reality check.
She is having some bone cement injected next week and we are hoping this takes away some of the constant pain. In the meantime my youngest sister is now getting married next summer and so this has given my parents a fresh distraction! She reminded me yesterday that life does go on…
Thanks
Fi
PS I don't know her recent blood results but they had dropped to about 5 about 6 weeks ago. She is also very lucky to be able to have treatment in our local hospital 5 mins away

[PerkymiteParticipant]

Things are sounding a little better already Fiona 🙂 . I would not worry to much about the tears. I think you will find most MM sufferers suffer from emotional bouts, in the main I believe this is a side affect of the Chemo. A sad story on the news can reduce me to tears for some reason.
Kindest regards

David

[brochoParticipant]

Hi Fiona I just want to wish your mum good luck for next week and life will seem much better without that awful pain The wedding is a wonderful thing to look forward to for all of you , your mum must be very proud of her daughters David is so right about the emotional see-saw that goes with treatment and on top of that chemo leaves you so tired , its little wonder we burst into tears !! love Bridget

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