[Monty47Participant]

Hi All,

Not sure what I am looking for but hopefully I might find some direction, don't know what to do with myself! So maybe I can help or provide hope….who knows!

Firstly my Dad was diagnosed with MM in 2001 at just 35 and myself 11, I remember not wanting to ask questions and I don't know the ins and outs of treatments etc but I do remember what it was like with Dad in hospital etc so I guess if anyone has children with questions then I would be happy to share my experiences.

Sadly my Dad passed away earlier in the year after getting pneumonia. 6 months on i'm still hurting and just wanted too know if anyone else has a similar experience to myself.

My Dad was/is an amazing man and I am so proud of the way he fought for us for all those years. It all feels so unfair why him? why so young?

I have probably re-written this more than enough times now so will live it there- if anyone would like to get in touch please do.

SP

[eveParticipant]

Hi SP

Welcome to the forum,plus I am sorry to hear about your Dad,no one should live with this illness or watch an illness for half his life as you have done:-P

What did stand out about your post,is your offer to help,but as you say as a child,you did not understand most of the treatment,but I think this site can help you understand things that you closed the door on many years ago,but saying that you were just a small child who looked on as the grown ups coped with it,Myeloma now has a book for children to explain why Mum or Dad is Living with Myeloma,next we need one for Grandchildren 🙂

I do think maybe it's you who is looking for answers,either way you are very welcome,there are lots of parents on here who have young children,and want there children's world not to be about the Myeloma illness,I do not know if that's a good thing,but parents strive to keep there children's childhood normal,but I think sometimes we forget that death is normal too.

So SP I hope you find what ever you are looking for.Eve

[dickbParticipant]

Hi there, we are the reverse of you, I am the father with MM and my daughter is 6, I am a bit older than your father though. I think about death and my daughter and how it will affect her when I'm gone, the thing is we don't know whhen that will be and I intend it to be a very long time from now.

As for how we deal with her and the illness, as Eve says, we try not to let the MM get in the way of a normal life for her. She knows I have to go for treatment and that I will go back into hospital but we tell her things on a strictly need to know basis. I am lucky, I still ride my bike, I don't have excessive pain at the moment and apart from being out of breath possibly caused by lung damage from the Pneumonia, I feel ok. Don't get me wrong, I do have bone lessions, reduced immunity and the chemo has knocked me about a bit but they are my problems, not my daughters.

I think it helps that she is so young, her world is so simple.

[DebsParticipant]

Hi SP
I started writing a reply to this a little while ago and then lost it.
So here goes again. Firstly I am really sorry to hear about your dad….I can't begin to imagine and like with Dick, I am in your dad's position so it is something that always worries me. I have two children age 7 and 9….they were 3 and 5 when I was first diagnosed. I have never said 'why me'. My fear isn't so much for me (although of course I don't want to get seriously ill!) but for my children as I don't feel that children should have to go through that heartache and pain – like you have had to.
Your offer to help with your experience is amazingly generous of you, especially when you are still going through your grief process. I am sure lots of us would love to understand which bits worked well with you coping throughout the years and which bits you wish had been different. Although every family is different, and everyone copes in different ways.
Blimey, I haven't written on this site for some time but felt I really wanted to reply to you today. But I sit here writing with tears falling down my face….it reminds me of how unfair this is on the people too young to understand properly (as much as those who are old enough).
I think that is part of why I have moved away from this site and only pop back in these days. I find it too hard to live every day in the shadow of my myeloma and so I try, whilst I'm in remission, to live my days as I did before diagnosis….maybe that way the kids won't really realise what is going on until I have to go through my second transplant.
Good luck SP and thank you for sharing.
Debs xx

[AlexBParticipant]

I only just found this, SP
I’m another in the position your Dad was in – I was 39 when I was diagnosed, and my kids were 6, 4 and 0 (now 8, 6 and 1).
I don’t know what to say to you – but I’ve spent a lot of the last year or so thinking about my kids being in your position. I’m sure your Dad did too.
Myeloma is a piece of shit. I’m glad you didn’t know the ins and outs of treatment at the time, if it meant you got more “normal” time together. I shield my kids, not because I’m afraid of death, or don’t think they can comprehend it. But because I don’t want their childhood, and our relationship, polluted by it. Death (or the thought of it), already pollutes my adult relationships, and that is enough.
Your offer to answer questions is a very generous one. Can I leave a note to my kids to call you? – but hopefully not for a very long time.
I don’t know if my experience is anything like your father’s. I’ve learned, this last year, how easy and wrong it is to project our feelings on to others. I do know, that for me, my family is more precious, and I enjoy them more, than ever before. I know that myeloma can’t take my soul or my spirit. I know that it isn’t how long we live, but how well we live that matters. And I know that children losing their parents is hideously horribly unfair, but also that life is unfair and it isn’t in my power to change that.
Strength to you SP. You’ve made me cry as well – sadly, but in a good way too, because I’m thinking how precious life it while we have it. Yours, as well as mine.

Alex

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