This topic contains 17 replies, has 11 voices, and was last updated by 
Gill 11 years, 2 months ago.
Yesterday I took a video of Stewart and Elsie playing together (Elsie is now 11 months old). It was a great day, the kind of day I will choose to remember for a long time to come. But, I think I ruined it for Stewart, I brought up viral and vaccine therapies. He just looked at me and quietly said please not to hold out for these and- didn't I have a great day? Couldn't I just be happy that we'd had such a good day together….?
And so it hit me like a tonne of bricks…I'm not helping him at all because I haven't come to terms with his diagnosis and prognosis.
On the 10th Sept it'll be a year to the day the doctor phoned to tell him he has myeloma I remember it vividly. I haven't been able to move past it.
How can I become the person he needs now? the person he can turn to without wrecking his head?
Hi Vanessa
You are on a learning curve,being the carer,you are trying to make the future easier,but your husband has to have normality in his life,Slim does not need to explore the future,but he does come out with some great one liners. EG: out of the blue: if I go in hospital,do not let them put DNR on my file.!!!!
Be normal,treat him normal,I would like to talk more with Slim as treatments fail it gets harder,but he does not feel the need,you both have to find your own way,s time goes on you will accept there is not going to be any miracle cures,learn as much as you can,this will help you,but wait until your husband wants to know,believe me he will ask.
For me the worse thing was worrying about upsetting each other,well we are past that hurdle,I have a saying: by worrying about tomorrow you will not enjoy today,write it down,stick it on the fridge,and promise yourself no matter what,you are going to enjoy today.Eve
I don't think you did anything wrong in wanting to discuss options for increasing life expectancy. Unfortunately, for us with MM, it is always there, in the back of the mind, we eat, sleep, breath and talk MM. Whilst a partner and carer also does the same, they do not have the constant bone pain, or the drug programme that an MM sufferer has to take, every week if not every day.
I don't think it was about having a go at you but more about knowing that possibly he will not see your daughter grow up. That I can empahise with because our daughter is 6. We don't know how long I will be around for, what I will witness in her life, how I will help her develop and at what stage of her life.
Please don't feel you are not helping hime because by being there you are, it is possibly more of a case of him being sensitive at the moment and there is nothing better than a child to make you realise how fragile your future may be. Another thing is that there may be a bit of guilt as well, I feel it sometimes, that I have this illness, that my wife has to do so much because I am not allowed to, that she may be left to bring up our daughter on her own.
You ask how you can be the person he needs, you probably are that person but it is something that you need to discuss between yourselves. You can't walk on eggshells either, there are some very unpleasent choices that both of you will have to face up to. So, while he may not of liked what you said, the fact is it had to be said sometime and it won't go away. Unfortunately, there is never a good time to discuss such things. MM is such an awful illness because of the way it tears sufferer's, families and carers apart.
Hi Vanessa,
It is hard to know what to do for the best sometimes but the main thing is you are there for Stewart and your daughter and you are all making great memories together 🙂
My husband Phil was diagnosed in May 2012 and it took us a long time to get the balance right and a few tears (from me) along the way. I now understand that Phil does not want to talk about MM much, he has stopped reading the online forums and he is just getting on with life between his monthly Zometa appointments. Phil knows I still read the forums and when I judge he is in the right frame of mind I share the good news stories with him. Phil has also realised that I need to occasionally vent some steam about my job but it does not mean he has to rush back to work. The most important thing is we have agreed that if one of needs to discuss something we will but otherwise we are just trying to get a sense of normal back.
Communication is very important and is needed, you and Stewart just need to work out the best way of doing this, it is an ongoing process and there is no right or wrong way to come to terms with a Myeloma diagnosis, I am still coming to terms with it now.
Megan
Fortunately, right from the start I have been able to discuss anything with my husband about my MM.
We've come through the initial numbing shock, brain scrambling irrational thinking, treatment, SCT, recovery and now drug-free happy remission.
I can honestly say that I've only had one or two wobbly moments in the early days when I thought my MM diagnosis was an instant death sentence, but soon got over that when I came to my senses and realised I had plenty of future ahead of me (if not as much as I thought).
It's important to keep up with treatments in the pipeline. I find it a great comfort to know that there are so many doctors and scientists devoting their lives to finding a cure for MM.
My husband was a brilliant carer when I needed cheering up. His upbeat, positive attitude and humour kept me laughing through tough times.
I hope you do come to terms with Stewarts diagnosis and that you both enjoy all the good days ahead of you.
🙂
Hi Vanessa.
As someone with MM I do keep up with all the latest news and development of new novel therapies. They do offer hope for the future but sadly for a lot of us with MM that future is to far away.
Even if and it's a big if these therapies do prove to work getting them from lab to patient takes years. Then there is the problem of the drugs not working for everyone. I for one have not found a drug to date that has put me into remission after nearly two years of trying and I'm running out of drugs to try. I'm currently on Revlimid which is a new drug that is just starting to be widely used and that is only keeping me stable. There's two new drugs waiting Nice approval but that can take up to two years! Hopefully they'll get through a lot quicker but then there's no guarantee they'll work for me.
All this means that my wife and I live for today and have no long term plans – booking holidays two months in advance is done with the rider that its only money we lose if we can't go.
There'll always be new and exciting therapies on the horizon and our goal as MMers is to reach the next development but we also realise that we can't hang our hat on being around when they become available.
I realise this sounds pessimistic but it's a reality we have living with MM every hour of every day for the rest of our lives. We all hope for a cure and all hope to be around when it happens and we hope that that cure will be effective for us but that's only a dream at the moment.
As Eve says enjoy today don't worry about tomorrow you can only live in the present. Worrying about tomorrow spoils today.
I realise its easy to say but it's not easy to not worry about the future.
My view of my life rightly or wrongly is I'm as good as I'm ever going to be now I can't wait till I improve to do thing later.
Sorry if this isn't what you want to hear but these are my personal feelings.
Wishing you and Stewart all the best on your MM journey
Every day is gift
Enjoy it
Andy xx
Hi Vanessa,
I don't always answer every thread because quite often somebody has already covered what I had to say. It has happened here, neatly and concisely. For my answer read Dick B's reply… he has covered what I would have said apart from the fact that my three children are all 30 or above… but with five very loving grandchildren with curious minds and observant eyes and ears;-) .
I wish you both all the best and I will follow your journeys for as long as I can.:-)
Dai.
Eve, I will try to take your words of wisdom and follow them. Thank you so much. Vanessa
DickB
Your message was profoundly moving, particularly when you spoke about your daughter. I know Stewart feels exactly as you do, I try to reassure him that he should never ever feel guilty. I hope the same for you. None of this is your fault, its no ones fault, its just fate.
He's a brilliant dad, she lights up when he comes into the room and I'm taking videos daily so that she has lots of evidence that he adores her. I also have a very good long term memory.
The awkward discussions have yet to happen between Stewart and I regarding Elsie's upbringing, awkward because I dread these moments, its all too real. But it could well be years down the line – I'm hoping.
You sound like a very thoughtful person, I'm sure your wife feels very lucky. I feel the same way about Stewart, I'd do anything for him,so rest assured Id say the same for your partner.
I could ramble all day,sorry.
Thank you for your response, it stopped me from wallowing and made me look at he bigger picture.
Megan,
Stewart sounds like Phil, he no longer looks at the forums either. But unfortunately the SCT doesn't appear to have reduced his pp levels. Regardless , you're right its the making of memories thats important now. I have to stop looking for miracles and live for today. I just struggle with this but am trying.
Andy,
Thank you for your reality check. Its not pessimistic , more realistic, some thing I struggle with. I have a vivid imagination and overreaching expectations. When I read about ground breaking viral therapy in Ottawa recently I grasped onto this for dear life and didn't realise that it takes so long to come to fruition.
Then, when Stewart reacted as he did, it sank in that it may not work, nor may it happen on time and this just shook my world.
The fact that Stewart , the person with MM can handle this mentally makes me think hes so strong. You too sound like a very strong person, I admire you.
I wish I could be like you both, I resolve to be. I need to be for his sake and for the sake of our little girl. I need to live for today
Thank you Dai, I hope to follow your story for a long time also. I send you my best hopes and wishes.
Hi Venessa,
It's my personal belief that the carers in this horrible journey with MM get the s****y end of the stick.
We MMers know what we are going through we know what we are up against and most of us know that we are on borrowed time. We take the treatment and can feel its side effects. We can feel the physical damage MM has or is doing to us. We also know if we are lucky enough to be in remission it will return at sometime in the future. Hopefully a long time in the future but it will return. We also see how others react to our disease and mostly it is supportive and helpful though some don't know how to handle it and don't know what to say to us so avoid us.
Carers on the other hand have stand on the sidelines and watch their husband, wife, partner or parent, their loved one go through the treatment. They see the good days and the bad days and can only watch fearfully as their loved one battles the MM. They must feel helpless watching. No matter how supportive in the bad times they are MM is always something they have no control over. In the good times I imagine they wonder how long is this going to last. Carers are constantly on the lookout for changes in mood, temperature fearful of every cough and sneeze anything take could indicate a new problem and that is very wearing.
My wife has to do nearly everything around the house and also work full time there is no respite. That is also very wearing.
Carers are very aware that they will lose their loved one and have to cope with looking to a future alone. Carrying on their lives with a massive hole in their life. Wondering how they will cope. It must be in their thoughts 24/7
Carers are not trained for the role it's something they pick up through experience with very little help. There is help out there. My wife went to consuling, hope she doesn't mind me saying that, and it helped put into perspective what she could and couldn't influence on this journey. It helped her see the whole picture and her role in it, but it didn't change the facts.
Carers to me are the real heros or heroines in any MM journey. I personally have nothing but admiration for every last one of them. We MMers may not show it often enough but most of us are aware of what you are going through and it breaks our hearts to see it.
It's not wrong to be optimistic Vanessa and despite the doom and gloom I seem to be writing there are people living a long time with MM and new and better drugs are coming along all the time and hopefully a cure will soon be within reach. Stewart knows this also and I even know it. Talk things over with Stewart discuss his and your hopes and fears regularly. Know how his head is working and tell him how your head is working.
I find talking about it helps me the more I repeat my story to others the more it helps me get things straight in my head.
Be optimistic Vanessa be positive try and forgive Stewarts mood swings. There's nothing wrong with aurguing it can clear the air and it's normal. Try and have fun make memories to hold and cherish. Live everyday, the worry will still be there, but try and get on with living today. Look after yourself and be selfish at times and do what you want to do. Have girly nights out. My wife went away with her friends for a weekend recently life goes on all be it a different one than we had planned. I go out with my friends for a couple of beers when I can – probably more now than I used to!
Sorry I've rambled on again it's the steroids.
Wishing you both the best on your journey hoping it will be a long one.
Every day is a gift.
Received with thanks
Andy xx
Morning Andy, never mind the steroids, you have put into words what so many sufferers feel about our carers, I can't add anything more to what you say.
Thank you
Tony F
Dear Vanessa
Yesterday is history. Tomorrow is a mystery. Today is a gift.
Hold onto that gift for as long as you can
Love Gillxxx
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