This topic contains 11 replies, has 10 voices, and was last updated by 
My husband was diagnosed with MM in 2005 He was treated with CTD followed by a stem cell transplant. Relapsed in 2009 and treated with Velcade and a failed attempt at harvesting cells, A bit of remission and then relapsed in August 2011 Treated with Lenalidomide but was hospitalised for a bit due to acute kidney injury. Now on maintenance Lenalidomide and the dreaded Dex. I was lucky and able to give up work and we relocated to Devon.. Something we had always dreamed of. But I feel bad when I wish my old life back. My husband is always tired and in bed by 8pm …leaving me with my glass of wine. He is now on Aranesp..aka EPO.. the preferred drug of banned cyclists as he is severely anaemic . I am not looking for sympathy…well maybe a bit. I just feel bad if I leave him to visit my old friends and so guilty at wishing for a better life. He looks good and healthy.. So difficult for non MM people to understand I guess. I know from reading these blogs there are so many people worse off than us. Xxx
Hi there,
I really feel for your situation – I'm at the start of the journey with my dad having been diagnosed 7 weeks ago – so I know you must be so exhausted with it.
I really don't think you should feel bad for wishing for your old life – I suspect every single person in your situation must do the same sometimes.
You absolutely must make time for yourself and for seeing friends and trying to have some normality away from the MM bubble. Its easy to say, but you have no reason to feel guilty – I'm sure you are a better person and more able to support your husband by having a little respite for yourself.
Look after and be kind to yourself – we're all allowed to feel sorry for ourselves sometimes 🙂
Steph xx
Hi there,
It is very difficult that's for sure. You feel how you feel. We would all wish our partners never had this condition, shocking, invasive and ruins the normal lives we all had. Who wouldn't crave that. We still haven't got over the shock and Colin was diagnosed in October 2011!. However it's something we can't change!. I would suggest you do have some time with your friends but also find time to do things earlier evening etc. we tend to go out with friends for lunch on the weekends or early evening then if Colin gets tired its not a problem, he doesn't miss out and we can enjoy stuff together. Maybe it's just finding a new normal 🙂
Best of luck with your husbands treatment and hope you had find that happy medium 🙂
Vicki and Colin x
It is perfectly normal to want your old life back but impossible. I would guess that they may have been some bad times or some boring things going on as well, do you want those back?
As for feeling guilty about wishing a better life, we all do that but as I've said before, the MM sufferers feel guilty as well because we feel as if we are destroying someone elses life and dreams.
So enough guilt, time to assess what you can change and how you can do it.
Hi Beverly
My husband Ian has just got home from hospital after one year. I was desperate to have him home but thought life would be better. I have cried all afternoon wishing for our old life but know it will never be the same. Trying to encourage Ian to go out every day even for a short while.
Wish you were near and we could share a bottle of wine.
Maureen x
Thanks everyone for your replies. A few more tears with a glass of wine tonight reading them. Dickb..you are right, life wasn't perfect before MM So yes, I have just organised a couple of days away on my own visiting friends and we do lunches now as well…a sign of old age not just MM! We used to go abroad a lot but cannot get insurance. Just returned from France for a few days uninsured. Always stressful and in fact both gone down with a bug on return. Not worth it…I'm going to book breaks in this lovely country we live instead knowing the NHS is on hand!
I will try and stop feeling so sorry for myself and concentrate on what we can do rather than can't do. It's taken me 8 years to get on this blog but you guys have inspired me in less than a week
Love to all
Bev
Xxx
Hi Beverleys,
We've just had a few days in Paris, we didn't take out extra insurance for me because we knew we probably wouldn't get it and secondly, where we live in Germany we can get the TGV direct to Paris and be there in less than in aound 3 hours, therefore short of breaking anything we would be ok. What was ironic was that we were both concerned about my health – always packed hand gel, took face masks for use on the Metro (didn't bother with them)packed additional clothing each day – but it was my wife who had a stomach upset. My biggest problem was constant tiredness which made me very irritable sometimes. We will do it again.
Bandityoga, I'm afraid Ian has to motivate himself, if he's like me, being told to do things can get his back up. As part of the treatment for cancer here, the doctors offer counselling, is it worth looking at the same for Ian because it could help him with self motivation.
You need to look after yourself in order to look after someone else. If your health suffers you will not be able to care for your husband. Why not get some support from Macmillan Nurses in your area. They are available for the patient and the carer and I have heard they are very good. You need to talk to someone who is not related to your family so you can vent your frustrations and feelings. Just talking sometimes can help. I hope you enjoy your break. Jan
Hi there Bev ?
I have just read your post and it has put things into perspective more for me. I am the MM sufferer, my husband works full time and we have 2 daughters at college. I feel really down some days at how I have affected or wrecked all our lives, I feel guilty we have not been on holiday for 2 years now, apart from 2 nights away in July.
This thread and all the replies have really made me think differently, many wise words and suggestions, I really have to be more positive for all our sakes. Thank you and good luck to all on your journey.
Karen
Hi Beverly
I have just caught up with your post. As everyone else has said, you must look after yourself too. Glad you have now planned a break.
I thought the wisest comment made was that all of us affected by the dreaded MM, Carers and sufferers alike, have to adjust to a new normal! What a challenge. I think of all the people on here who have done this, Eve, wife of MM sufferer Slim is the best example. She has made it her business to gen up on all aspects of treatment and is ready to fight Slim's corner at the drop of a hat.
Do hope you and your husband still have time to create some more good memories. One day they will be all you have. Have you got other family members to support you.
Love to you both.
Mavis x
Hi bev
just read your post.
its right if you can't look after your self you cant look after
someone ells.
That's WY I live on my own.
get the man out. john..
Just reading through this. My situation is after being diagnosed some 4 years ago with smoldering myeloma, my wife's main concern was looking after me, finding out all she could about the disease to be able to ask the right questions, and we generally carried on as before, with holidays, moving house, me playing about with cars, etc. Then about 18 months ago, she developed a severe back ache,on investigation, this turned out to be completely unsuspected lung cancer that had spread, and she died 3 weeks later. So when it was decided that I needed treatment about 7 months ago, instead of having her very solid support behind me, I found myself very much alone, and yes I did – and sometimes still do – feel sorry for myself. However, one day I woke up, said to myself " s-d this, get up and get on with it" which is what I now try to do. It's not easy, and the added complication of being a " single" doesn't help, however one or two good friends drag me out for lunch and evening outings. What I find really frustrating,and I'm sure other men like me who previously never stopped doing things also find ( something carers need to consider the mental effect of ) is my mind still thinks it can do "it" but my body due to back problems and tiredness can't. However my attitude is that it will all be ok one day, and I plan on that basis – even bought a 1932 car to keep me busy !!
My daughters support me as much as I let them, but I don't want to interfere in their lives to much.
So, Beverleys, don't feel guilty about yearning for the old life, it's a natural reaction to the changes and problems you are facing, I certainly on the down days do just that, and I'm sure your husband does too, we wouldn't be normal if we didn't. I realise I am only at the beginning of things compared to you and your husband, you have been through so much, but don't be so hard on yourself. You need " time out " and I'm sure your husband realises this, I'm sure it makes you more able to deal with things.Well , beginning to ramble so I'll end this now. Good luck for the future, Jeff
The topic ‘8 years on…’ is closed to new replies.
