[Anonymous]

Hi all

This isn?t meant to be self pitying or morbid, but it?s just crap that is in my head at the moment.

I never mentioned in the previous post anything about my age.

Well, I?m 47, so relatively young.

I have two children, 3 and 5. So unless some amazing drug comes along, I assume I may get around 10 years, and so therefore, won?t see them go through university or college?

When I was first diagnosed in July 2011, I only had one small lesion on my right thigh, so no bone damage.

Now that the bloody SCT has failed, I feel like the clock is ticking, which in turn is making me now think that my Wife, who obviously also has to go through this nonsense, is having to wait around until the end before she moves on and starts a new life.

It?s just the nonsense that is flicking through my mind at the moment, obviously due to the MM messing with it, as it does.

God I need to ?man up?, I feel like blubbing as I?m typing, which is annoying me, as I?m usually very strong.

Not after any answers, but just feel the need to write things at the moment, unlike when I was first diagnosed.

Terry

[eveParticipant]

Hi Terry

You are in the shock stage,Slim only got 6 months between 100 day BMB and the next one,your life turns up side down,we thought he might get 2 years,so yes it,s a bit of a bummer,Helen says it bites you in the bum,when you do not expect it,I call it a shark attack.

Slim worries about me,why???.you cannot change the future ,I want to just have nice times ahead of us,I will not let this Myeloma take over all are life,yes we have to adapt and change things that are no longer suitable in are future.
Give yourself time to accept things,we both had are tear,s,you would not be human if you didn't,.Eve

[VickiParticipant]

Hi terry,

I am 46 and my partner Colin 56. When Colin was diagnosed we thought our world had come to an end…..scared, worried, like a rabbit in the headlights. Is life a bit different, yes, we can't book a holiday at the drop of a hat like we used to, packing a bag and going away for the weekend at a moments thought. Nope, but I can say to you as a partner of someone with mm every day is a pleasure because we are together :-), no need for anything else :-). Yes it a bugger when we have to trip off to hospital, worry about why this pain, that tiredness etc but we are in it together for the long haul. I'm sure your wife/partner thinks the same.

I worry a lot sometimes and worry about the dreaded life expectancy….I know you have young children, but I've tried to remember my mums advice. None of us are promised to tomorrow, there just the dimension of myeloma I know!, but why shouldn't the drugs work and why shouldn't they find better ones and why shouldn't you be the one to see your children go to uni!!. No need to man up, keep talking and feel the love and support your wife want to give you, as you are the one she wants, not a jet set lifestyle….speaking from personal thought 🙂

Chin up and sorry to go on a bit, we had this same conversation, Colin said the very same things to me, why do I bother……no chance of me going anywhere he's the love of my life and I am going nowhere, I'm as stubborn as he is and we are going to beat this mm, so come on terry too 🙂

Vicki and Colin x

[tomParticipant]

Been their and done that Terry my old friend 😀

BUT Turned my sorry little ass round and now face it head on (not always with a smile though).

I get asked how I cope with the prospect of Dying ?? I say the same way I cope with Living, one day at a time, yes I was given "Notice" that I have a terminal illness, but that's just warning me what I have others out their don't know what they have and I nor my Dr knows when I have got my final week.

I/we have three grown up sons and six Grandkids yes am sure I wont see them go to Uni but am sure as hell know that they will think of me when they do.
I spend as much time with my Kids and Grandkids as possible to make Memories and Time allows us to make Memories so I wont waste it I will use it to our advantage.

I know its Hard Terry but get that Crap out of your head and enjoy your time with your family and friends.

Tom (been their and near done it) Onwards and Upwards x

[jmsmythParticipant]

Hi Terry

My husband has had MM for nearly 7 years. He has just had his SCT. I couldn't care less if I never have another holiday in my life. As long as I have Frank I will be happy. I do not know your wife but I am certain that she "is not waiting around until the end before she can move on with her life". As Andy says – every days a gift. This blo*dy disease turns your life up side down. As a carer it is so hard to watch your loved one cope with this illness and you are so powerless to do anything to help them only to be there for them, support them and to love them. Does your wife know how you feel? I know it's not the 'manly' thing for men to wear their heart on their sleeve.

Come on here and rant. We have all been there

Take care
Love Jean x

[PhilipandfionaParticipant]

Hi

I'm an MM wife, and wanted to give you my perspective. My husband was diagnosed almost exactly 1 year ago. He snapped his femur. Since then he has has CTD and an SCT (oh how we love initials) and is currently in full remission. He is 47. We have 2 children, 11 and 8. I am 40.

I am desperately sad and angry that this terrible disease has turned our world upside down. But am I putting my life on hold. Absolutely NOT. For better for worse, in sickness and in health. That's what we said. In the modern era, perhaps that doesn't mean as much to some as to others, but for me, it just means that we have to put the "sickness" bit into practice a little earlier than we anticipated.

For a partner, I can't think of much worse words in the world than "your husband/wife has cancer". But it has made us take stock. We have realised how much we love each other, and how precious that is.

Far from being on hold, we want to make sure we live our lives, and show that love to each other every day for as long as we have. I know that far from waiting for the end for me to move on, I want to fill the time we have with love and laughter, friends and family, so that if and when the time comes, I will have lots of memories. I cannot possibly imagine, and frankly don't want to ever contemplate, moving on. I feel, and I am sure your wife feels, blessed to have my husband.

My husband and I have discussed this, and rather than me moving on with my life, I was worried that he would leave me so that he could go off and have some last flings / time in the sun and do all the things he may not be able to do eventually.

I was worried that, bluntly, as the chances are that the children and I will still be here in a few years when he is gone, and I can't give up work and travel the world or spend the next 10 years flinging myself out of airplanes etc as I will have to provide for them when he is gone, he would want to leave us. He's said that actually, it makes him relish what he has and knows he is where he wants to be. It is a choice for us both to be where we are, with each other.

Now it is a horrible horrible thing, and there are no silver linings to this cloud, but if it makes you positively choose to be with your family, and vice versa then I say glory in that, and let your wife love you for the time you are together, and don't write yourself off yet.

You don't know how long you have. None of us do – I could be knocked over tomorrow. But if you don't get busy living and loving, you may as well get busy dying (with apologies for plagiarising the Shawshank Redemption). Make sure you have as good a time with your wife as you can, so that she can, if she is ever ready to, move on without regrets, and with a heart filled only with happiness.

Sorry about the soppiness. I'd probably give my husband a good clip round the ear and tell him not to be so daft if he said this to me, but I wanted to give you the longer, more detailed explanation of why I would!

Fiona

[BADGERParticipant]

Hello Terry
go ahead and blub why not we all do because terrible mm dont give up hope loads of new treatments coming on stream my husband is my carer he does get a bit depressed but he will be with me all the way as i am sure your wife will be for you so try and look forward as someone said to me the other day if you are a good poker player you make the best of a bad hand
Good Luck
Love Jo x

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