[jeff605Participant]

With ref. to the blue badge problem, the Macmillan nurse filled the horribly long form in for me and the badge came through the post a few days later. Perhaps it helps to have help from someone familiar with the system and form. Although I can walk a short distance, due to my back problem I actually need the disabled space to open the door wide enough to get out of the car ! I quite understand the travelling / driving difficulty, I only live some 25 miles from the hospital which I can just about manage to drive, but by the time I've spent anything up to 6hrs in the hospital (is it only my clinic that runs 1 1/2 to 2 hrs late) I don't trust myself to drive myself home I feel so whacked out.Jeff

[jeff605Participant]

Hi, all. What a relief to read this thread !! I couldn't understand why I have so many rough weekends,feeling very wobbly and shaking quite heavily and feeling generally out of sorts and exhausted. From what I have read it ties in with the " coming down " from the Dex. So that's one thing less to worry about. Whew !! Jeff

[jeff605Participant]

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

[jeff605Participant]

Hi, everyone. Not exactly a newbie, as I used the forum when I was first diagnosed some 4 years ago,smoldered away for 3 2/1years,but needed to start meds.6 months ago.One thing to note,the news that I needed treatment after all that time hit me almost as hard as the original diagnosis and has taken some time to come to terms with.So be prepared to expect to be taken aback when – and lets hope it's a long way off- things change.I'm too old at 75 for SCT, and am on CDTa,which is going well.My main " side effect" is a damaged spine, which means fairly heavy pain relief, and a height loss of some 4". I am researching the two alternative surgery intervention for this, Vertobroplasty and Kyphoplasty, (any advise/recommentation concerning these gratefully received)I am interested in the kyphoplasty as this regains some of the lost height, but am getting a negative attitude to this – why do we have to drag information from consultants, no-one bothered to warn me about the height loss )Anyway, live life day by day,enjoy the things you want to do, and try to forget about it until you walk through the consultants door for a check-up. Easier said than done I know, but it's how I stopped this horrible disease running my life while it was smoldering
Good luck for the future, Jeff

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