[eveParticipant]

Ji Jeff

This site is about helping one another,and I know sometimes I come a cross very blunt and straight to the point,but no offence is intended,I can just tell you we have been there so know exactly how you feel,and not to give up!!!!
Lots of people on here have and still do help me,I suppose in many ways I have learnt to ride the roller coaster with its highs and lows,so the journey is not scary,we know were this ride is going,just trying to make it last as long as possible.

So you make sure when you feeling down ,come on here!! Or you have bad news, I would ask for a second opinion,???
You also say about bad news with your daughter!!! We know life hits us hard blows sometimes,we cannot change this,we lost are 16 year old grandson 2 years ago,but you pick up the pieces for the sake of the rest of the family,and life does gone on,we just do different things,I have forgotten what hobbies are Jeff.
Anyway glad you are feeling more positive and hope my words were not to direct,.Eve

[andygParticipant]

Hi Jeff
I’ve just read through your posts and can understand your concerns. As someone who has been through two and a half years of chemo which is still on going! Maybe I can shed some light on your consultants thinking even if he’s not telling you! Although your PPs are rising they don’t seem to be causing any other major problems. I know your feeling tired and genera all not 100% but in my opinion they are holding off treatment due to two factors
1. Your age 2. Quality of life
I’m 55 and it was explained to me when I was told auto SCT was not possible and Allo SCT unlikely that I should enjoy the quality of life I had even with the side effects as long as possible. My QofL has been ok but I’m youngish and strong so can put up with the side effects. I was told bluntly an Allo SCT might work though it was doubtful I’d survive the transplant and if it worked the recovery time could well over a year and may not even be successful. I was told take the drugs enjoy life whilst you can. The underlining sentiment not spoken was you ain’t got long don’t waste what you have being more sick than you need to be. That was 2 years ago and I’m still around bugging people and that sentiment still applies.
Oh dear I’m rambling sorry it’s my Dex night!
What I’m trying to say is I think they’re keeping you off the drugs as long as possible so that you can enjoy each day the best you can and when they have to restart treatment I think they’ll do it gently to try and maintain your quality of life.
I hope that explains a little and I must emphasise that only MY opinion on limited knowledge I could be talking out my backside! There’s no reason why you can’t go plenty of years yet with MM and the newer drug do gave less side effects.

Every day is a gift
Cherish everyone one of them

Andy

[jeff605Participant]

Hi Andy, thanks for the very informative reply. I usually take one of my three daughters into the consultant’s meeting with me, partly so they can listen and remind me later on as to what was said, and partly so they know what’s going on, as they are all very nervous after losing their mum three weeks after she was diagnosed with unsuspected lung cancer which had spread everywhere. It looks like I shall need to ask some questions and prepare them for possible not nice to hear answers. Let’s hope I can get some meaningful answers from the consultant, as I’ve said elsewhere not easy with this team, although I do trust them to do the best for me, they don’t seem too keen to tell in detail what they are doing without being asked,and I don’t always know what to ask.
Although I try to be upbeat and get on with life, I am , as again I’ve said elsewhere finding this difficult due to my back problem and the mobility problems this causes. I bought a 1932 Hillman Minx last May, sofar have managed about 15 hours work on it and can’t wait to drive it !! If I could get some idea as to life expectancy – difficult with myeloma I know – I could stop worrying about decluttering the house and get on with life !
This is getting into a moan so I’ll stop now. Thanks to all who have helped me come to terms with what’s happened, I think I am much better prepared to face up to the future now.Jeff

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