[jmsmythParticipant]

Hi Pauline and Marc

Welcome from me also. I know you don't want to belong to our gang but they are a great bunch of people, you will get lots of support and friendship here. My hubby was diagnosed with MM in 2006 quite by 'accident' in blood test for something else. He smouldered until July last year when he started CDT. He had SCT end of February and as the others have said its not a walk in the park but you get through it. Frank is getting on well and goes in June for 100 day assessment. Pauline I can relate to what happened with you daughter in law. We have a young friend who is 40 and we have known her for 20 years. Her dad disappeared of the scene and she always said Frank was her adopted dad. When he was diagnosed and on no treatment she was always around. Once he started treatment in July last year we have not seen or heard from her. Maybe they just can't handle it.
Anyway rabbiting on -sorry but welcome
Love Jean

[andygParticipant]

Hiya Pauline & Marc.
Welcome to the forum, sorry that you've had to join, you'll find lots of advice and support here.
A brief history of my case – I'm 54 and was diagnosed Oct 2011 after approximately 18 months of back pain. I was told I probably had MM 3 days before our wedding! At the first meeting with my consultant I was informed the MM was very treatable but not curable. However my case has turned out to be reluctant to conform with the norm. I went through all the standard and not so standard treatments with little or no success which ruled out me having a Auto Sct (self) I was put forward for a Allo Sct (donor) but no suitable match was found. I'm now on RCD and have for 14 months which is keeping my paraproteins steady – 20 months total up to now of strong drugs! Having said all that I'm feeling at my best now since diagnosis. Got an appointment for some back surgery winging its way to me at this moment I hope.
My case is rare may even be very rare as I've not come across many with similar histories as mine either here or at the local support group. Everyone's treatment response is different and their journey to Sct is different some get there quickly some take a bit more time to get there and me? guess I'm a bit different 😉 everyone's journey is different.
We've just returned from a holiday in Greece and we had a great time so normal things are possible once you settle down and get used to living with MM as you Pauline will hopefully of experienced getting used to living with MS.
Your both at the start of the MM journey which is frightening, scarey and often feels very lonely. Here you'll find advice and support no matter how trivial you think the question ask it here and you'll get a reply – well several replies. If you want to shout and scream this is the place to do it we will all try to help if we can or point you in the right direction to find the help you need be it medical, emotional or financial.
I wish you both well on your individual journeys and hope to have your company on this forum for a long time.

Every day is a gift

Andy xx

[PerkymiteParticipant]

Hi Pauline, Welcome to the Forum. As has been said not a place you want to be but here we all are. They are a good bunch and you will find that everybody will do there best to help where they can.

Kindest regards – vasbyte

David

[BabsParticipant]

Hi Pauline.
I started with backpain in Nov 2010 and went straight to my doctor, suffered fractured rib in April 2011 and eventually diagnosed 3rd July 2011 after nearly dying from organ failure the consultant told me after telling me I had cancer but all I heard was that they could make me feel better! I left hospital after weekend of tests and started chemo straight away, I had daily visits from the district nurses, our house became to look just like my late 85 year old mothers disable flat with all my disabled aids I needed then,I was given wheelchair, I could not walk , get to bed , walk up stairs, I thought I was about to die, will this be the end of my life aged just 53!
Well here I am today,most of the aids returned to the loan shop, medically retired as no longer able to work,cannot stand for long,walk too far,still get backache but am able to manage it now with just PARACETAMOL, still need wheelchair but not all the time.
We have just returned from 6 days in New York which I never imagined possible but after finding this site, full of amazine people with MM and their stories of how they manage and what they have still maanaged to do with it, I began to see there is life with MM, NOT LIFE OVER AS I FIRST THOUGHT.
I too was very large in the beggining due to the medication, had received notification of this site but was so ill and my husband not into the internet so I looked MM up on internet too first as did my daughter – beware – it is not really correct and gives the bleakest look for the future, this site is the only place I look now and I have phoned the nurses and they are so helpful and knowledgeable.
MM is very individual and varies in degrees and I found in the beginning I was bitter and kept crying , why was I so disabled by this and others still able to work with it? Why did I have to have a cancer with soooo much pain when others had no pain at all ? Now I have listened to all my new friends on here and now look at life with the attitude that we know we do not have the expected years we all hoped for so look on every day as a bonus and make the most of my time with friends and family, am enjoying my quality time, trying to complete my bucket list, the wheelchair in New York and at the airports turned out to be a real bonus – we had booked disabled assisstance at both airports and it meant we were pushed straight to the front so no queing and so actually made our holiday probably less stressfull and more enjoyable than for others.
I do resent also the difference it has made to our relationship,my husband gave up work to become my full time carer as I could not manage myself, the wheelchair does not allow us to walk together , hold hands and converse with each other, but it is an adjustment that means we can still enjoy life as much as we can.You have already experienced this yourselves and I hope you are able to get help needed by you both to enable you to live your life together to the full.
Now I look normal from the outside, get wierd looks when I am walking pushing the wheelchair (as we still need a little exercise),other times I walk with walking stick, some times without,depends how much walking and where I am going, I lost my hair after my SCT and am now sporting a good head of curly dark hair,I just think how much I am saving on perming which many women pay for.
Life is a gift and onwards and upwards are what Andy and Tom say, they are just two of the many inspiring people on this site with MM themselves,
Best wishes to you both
Love Babs

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