This time last year Slim after a number of doctor,s visits,diagnosed with broken vertebra and osteopene,we were given the all clear to travel,we were on the west coast of France,with Slim so ill we could not go any further.I had no choice I had to drive a 4 ton motor home back to England,arrived back and went straight to doctor,s( to cut a long story short )he did not do anything except blood test.In the January Slim 3stone lighter and no progress decided to go private for a scan,but still needed referral from doctor.Luckily my doctor was away,and saw new doctor who examined Slim and said immediately.there was a disease were calcium leaves the bones.Our journey began.:-(
We are now one year on and what a year looking back I do not know how I have coped,and I so miss my life all the things we had planned for last year and never achieved,some times I feel so selfish,I have tried to keep myself busy doing a lot at home.>:-(
Slim is now ten times better than he was has put on 1 l/2 stone and although Myeloma is not in remission,and is on Velcade we are achieving a lot of things.:-D
So the journey goes on,still waiting for the bus stop to get off and get in are motor home8-)
My thought on one year Eve
It is also 1 year since I began my journey, rejected by blood bank because I was too anaemic to give blood and sent to my GP for tests -these came back in the second week of October and I was sent to haematology, no diagnosis just the start of a very anxious time. I still find it hard to believe that I am in this position! I look in the mirror and see my bald head, and wonder how I got here.
I asked my husband how he felt about it all the other day and how he was doing, he shrugged and said he was just getting on with it. I can sense his powerlessness, we can't talk much about it all, there are not really any words needed he just looks at me :-/ He's glad I'm getting better from the sct now but it must be so hard for you partners to watch the change from dynamic and strong individuals into stiff and achey ones.
This is the first year in the 32 years we've been together that we have not booked a holiday, something which we always looked forward to. I hope you get the motor home on the road again.
Hi Eve and Helen,
I find it hard but still, I offer a weak and conditional congratulations to you both.
The conditions are due to the fact that I sincerely wish that MM had never crossed your paths… that when your illness was finally diagnosed that it was almost anything but MM… in hindsight that is what I wished for myself at your stage. Knowing I had cancer, diagnosed initially (for over a year) as secondary bone cancer with primary unknown, I finally found Nottingham City Hospital and received first-class treatment… but the diagnosis was the very one I dreaded being confirmed and when it came I was stunned for a moment before deciding to fight it tooth and nail.
I was/am surprised that is only a year for you and Slim Eve… it seems like much, much more than twelve months and you have both been through the mill in that time… and it also seems that you have never known any sort of respite… until very recently that is… and I do hope that Velcade turns things round for you both. Breathing space and a touch of normality gives a sense of perspective as well as hope… and the knowledge, that while MM cannot be totally defeated, it is possible to keep it at bay… and when you have achieved that once it instills a confidence that it can be achieved again… and again.
You have managed to get through to the SCT and beyond Helen and I hope that it gives you a good few years with the beast that is MM off your back and into the back of your mind… and that you and your husband (name?) can enjoy conversations that do not contain any reference to illness, treatments and hospitals.
We all know that it is not possible to ban MM from your thoughts, however long or good our remissions… but we also know that there are days… sometimes weeks, where MM is a the kind of shadow that is cast behind rather than in front of us… well, at least for those of us who manage to reach the remission stage, be it CR or Plateau.
I do hope that Slim's current condition is maintained and grows into something positive and promising Eve… and that he gets his chance to grab some much deserved remission… sooner rather than later. I have never said it but my admiration for you both has been constant throughout your MM journey.
So my congratulations has its conditions but you are both here… and much better off than when you started. Long may it continue and I wish you both better health and a hopeful and even cheerful future. 🙂
Hi Eve and Helen A year on probably the longest year you have ever known,
your lives changed for ever, but hopefully things will get better for you both Dont feel selfish Eve Ive been married to Michael for 30years and hes had MM for 15 of them, how lucky he has been people say, thats not what I say,its robbed Michael of his life, well both of us really, he was a serving police officer 6ft 2ins never had a days illness in his life then along came MM. But looking back weve had good times and in a strange sort of way its brought us closer together, we have done things that we would have probably put on hold I agree with Dai its not possible to ban MM from your thoughts entirely but you learn to put them to the back of your mind
Good luck on your journeys
Sometimes you just do not believe what can happen in such a short space of time,I do not know which is worse,1 year or 15 years,It,s never ever going to go away.I suppose we have to draw strength from any remissions and as you say sue,there are good times,
It has made me appreciate Slim more,as for bringing us close,we got married after living together for 30 years plus.It does make you realise what is important,but as I said,guilt is the word,I so miss our life,I know I should just be grateful that after Septic pneumonia big time,we have more time.:-D
Dai it seems like a life time,I know they do not stage MM but Looking back Slim had been having problems for a few years,just put it down to not being as fit as he use to be.He was diving up to 5 years ago.
The MM when found,apart from tumour and back damage,shoulder blades and skull affected also ribs surprisingly not hips but he had one hip replaced,that,s never stopped being painful ,and will not have other one done.
Your right Dai we have to look what we have achieved,as you say if you had not moved to Nottingham,you would have been pushing up the daisies in Wales:-P
So Helen Dai and Sue, I lift my glass to another year.love Eve
Dear Eve,Dai and Sue
What a valuable source of sense and strength you all are. It helps to maintain optimism. I look forward to forgetting about myeloma even if only for a few hours:-/ And I too will raise a glass, water of course as wine still tastes terrible, to long journeys, made easier by good companions.:-)
Dear Eve (and Slim!) and Helen
I'm sure you have both found reservoirs of strength this year that you didn't know you had. Hang in there and enjoy the good times. I remind myself often that "this is the day"!
May there be many more years and may they be good ones.
what an excellent post. It certainly makes you reflect on life post MM. It is about a year for me too and like everyone else with MM it has been a year of going to a very bad place and half way back again. I'm not quite in full remission, but close enough. However I will never get my fitness back again and I just have to accept that. It has had a really bad impact on my wife too as she now has alcohol related problems. She just couldn't cope with me rapidly going downhill.
This forum is so good to share experiences and see what everyone else is going through.
Best of luck going forwards.
I know,I put weight on all the meals Slim asked for and could not eat,don,t like waste so the dog and I got fat,and Slim got thinner and shorter,
As for drinking, YES guilty,but realised from old,it does not help so try my best to moderate it.( a bottle a day) LOL:-P only kidding but i do understand.:-S
When I was . 30 I had a life changing problem,and I swore then,nothing would ever drag me so low again and I came out of it very strong person.Yes I have times when I am low,and even pop a pill from doctors mainly to keep control of my emotions,but I know,no matter what the future holds that,I can and will get over it.I do believe everyone has a duty to live to the best of there being.Have no faith,just when you see the quality of some lives my grandson for one who has CP,it brings it all home.
Dai will tell me off for this bit!!:-0
I tell myself ,stop weeping,get over yourself and I go out with a big smile on my face,there are people far worst off than us.So thats what I do,and have my moan on here Love Eve:-)
Hi Eve like you life has taught me things always get better in the end too ! I have always told my children to smile when they are feeling down It may start off being a false smile but just keep on and people around you smile too , eventually there is nothing false about it Hope you and Slim are having a good weekend love Bridget x
Nice to hear from you hoping you are keeping well,and have pain under control:-)
It,s the only way,Otherwise you would just give in,it,s so important to stay positive,just for your own well being,and if you can make people on this site more positive,then it has achieved a good result,and you do this all the time.;-)
We are going in motor home only to Canterbury,decorations and floor laying being done.Slim has 3 app I have 1 app,all at Canterbury,so save the drive:-S
Look after yourself,let us know how you get on with new drugs,hear from me when I get back. Love Eve
whats the saying when the going gets tough the tough get going! bet you dont feel tough most of the time crying and screaming inside and sometimes you have to let it go I think its the only way to manage then pick your self up and start again I am sure its you carers that suffer more because at times you must feel shut out with know one thinking of you I am sure its not really that way just feels like it.
Ihope you enjoy your few days away the break will do you good we have been to Dorset for three nights B.B the weather has been fab
Love to Slim
What a lovely post indeed. It is amazing how we all keep smiling and put on a brave face. Do we all do that? Do we all say "well there is always someone else worse off"? I know I do. Grah (hubby) is now 2 yrs post transplant (well he will be next month). Oh boy what a journey it has been but it has made us even closer and it has made us realise what is important to us. I gave up work and despite a big gaping hole in our finances I dont regret a minute of giving it all up. I love spending every waking moment with Grah and I only wished I had done it sooner. We brought a motorhome earlier this year and we are probably at our happiest when we are away in it. It has given us a new lease of life… we love it!
Hope all continues to go well, Eve
Good for you,I am a great believer,in what ever you want to do,mine just happens to be camper vans,you could not explain to anyone the kick you get out of it.Have had campers for over 18 years,travelled as far as the Sahara Dessert just wish we had done more,but feel ever so lucky,we did not wait until Slim was 65 as MM took over are lives just before his 66 birthday.
We do not have the big house or the money to go with it,only a Flat a wonderful camper van,and lots of wonderful memories and like minded friends.A home to me is not 4 walls and a roof,its the person you are with,that makes it a home
My girls think I am mad,but you hear so many people say (I wish I had Done that)
You make sure you make the most of grah remission,If you need any help about travelling abroad,or air de services or anything concerning travelling let me know,have a wonderful live enjoy!! Eve
Thanks Eve, I might take you up on that! I think our outlook on life is the same. I believe you should make the most of today and enjoy every minute of it. We dont have a lot of money but we have each other which is far better than anything else. I try to turn every negative into a positive (not always easy!) but it works for me. MM took over our lives for 2 yrs but this yr we have tried to control IT as opposed to letting IT control us. We are lucky to be in a good place at the moment. It took Grah quite a while to recover from the SCT and whilst he is unikely to be able to do all the things he could before the transplant, he doesn't do too badly so we cant grumble, far from it in fact.
I am glad Slim is doing well. It is a slow recovery but I truly believe that keeping positive does help.
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