[victoria1980Participant]

Hi my mum was diagnosed with Myeloma about 2 years ago but all she has needed was regular blood tests in that time. She hasnt been well since Christmas and the doctors have finally done x rays and a bone marrow biopsy. She got her results this week and its not good news so she has a appointment in a fortnight to discuss the treatment options. She seems to be coping with things ok but I cant stop crying, Im so frightened I am going to loose her. I dont know much about Myeloma and I keep reading about it but its not going in. Has anyone got any advice on how I can sort myself out so I can be there for her when she needs me. Thank You.

[PhilipandfionaParticipant]

Hi Victoria

You and your family have just stepped through the looking glass. It’s not a place any of us want to be. (it’s my husband who has MM not me). Yes, it’s frightening and scary, but you can adjust to the new reality. It will take time, but give yourself permission to cry. It is a form of grieving.

One thing i read recently was about the spiral of care. Imagine a spiral. At the centre is your mum. Next to her is her family, then after that her friends, then her family’s friends. Your job is to support those who are nearer to the centre than you. You seek support from those further out.

Let your mum know you’re scared and frightened for her, but right now she needs to concentrate on herself, and is probably feeling guilty about putting her family through this (as if we have a choice!!). So look after her, give her comfort, but get comfort and support from your own friends and family. let them help you.

i also found playing very loud music in the car where nobody can hear you worked for me!

You’ll be amazed how quickly this new normality takes over and you’ll be able to deal with it. A lot of people may not know what to say to you and your family, so you may have to help them out a bit by giving them permission to be speechless.

most of all, be kind to yourself don’t try to be superwoman.

xx

[VickiParticipant]

Hi victoria

I know what you mean, it is frightening because it’s unknown. It’s unpredictable and each person is different. I tried to harness my fear by helping Colin as much as I can, ask questions in the right places and just being there. When I think of the ultimate and if he wasn’t here it makes my stomach churn. What those nasty thoughts do is make you tired and not be able to enjoy the day. I have cried several times (on my own) since we had the results about his light chains, it’s natural.

I’m sorry your mum is in this myeloma bubble but I wish you all the best and so hope your mums treatment starts to get to grips with it

Best wishes

Vicki

[PerkymiteParticipant]

I guess your MUm’s appointment must be coming up this week. Are you gong with her, if not you should? Take paper and pencil if you have not got a good memory to make notes, some people even take mini recorders, it might be a lot to take in at the first meeting.

I wish your mum all the best of luck

Kindest regard – vasbtye

David

[tallulah55Participant]

I am sure you will find support on this site from both those with myeloma and also from their families who taking on the role of being carers unwittingly. Of course you are now in shock – it is a disease few are aware of and the ‘cancer’ label is frightening. The more you get to understand about it ( and hopefully you will find what you need, when you are ready for it, from this site and from your mother’s consultants) the more you will see it as a complex disease that cannot yet be cured but that has highly effective treatments.

As someone who was faced with my husband being diagnosed with a high grade renal cancer just before Christmas 2007 when he was faced with a 23% chance of being alive in 5 years, I’ve been through all the emotions possible. I’ve kept strong through my fabulous support network of friends and work colleagues and ( this is my way of dealing with things) of becoming very well informed and being as proactive as I can be with my husband’s care. That was 7 years ago, he was hit with a diagnosis of asymptomatic myeloma 18 months ago just as we should have been celebrating his 5 year survival of the first cancer and he’s now gone through treatment which has been tough at times but not terrible.

We both owe his continuing life and health to the most incredible care available through the NHS – the support that is available for your mother in 2014 is better than it ever has been for this disease, but you must find your way of seeking support as the shock wears off. I hope all goes well for you and your mother.

[victoria1980Participant]

Thank you for your replies. Went to the Doctors with Mum today and after taking all your advice asked loads of questions and now feel slightly better and optimistic about the future. She starts Chemo by tablet soon which has put her mind at rest as she thought she would have to stay in hospital meaning she would have been apart from my Dad who is disabled. She has been his sole carer for many years now and though obviously now they will need outside help it makes us all happier that they will be together through this first stage of treatment.

[VickiParticipant]

Wishing you all the best victoria. What I’ve found difficult is that I like to fix things and can’t damn well fix this condition, as much as I’d like to! Glad you have found some solid ground and very much hope your mums treatment starts to hit the condition!

Look after yourself too 🙂

Vicki and colin x

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