[MariParticipant]

Hello everyone,

I am sorry I dont get on to the site as much as I used to, but I do read posts from time to time when I can get on. I was thinking especially of Gill's post ME ME ME and I wary of coming back and just posting about us. However I hoped that maybe what I have to say today would serve as a touch of hope for people just starting out on their myeloma journey, and I remember well how scary that is. I wont go into details again, as so many of you know Steve's story and have supported us so much on our own journey to where we are now. (You all know who you are, and thank you)

To cut a long story short 18 months ago, Steve had spinal compression caused by a tumour on the spine and could not walk. Since then he has had CDT and a SCT in mid September 2010. He acheived complete remission just before Christmas. Yesterday I stood on the finish line and watched him complete the London to Brighton bike ride, 56 miles in total. This is something I never thought i would see but he is so well and so determined to regain his old life that he has worked hard to get here. Thanks to the wonderful treatment he has received and to be honest, a lot of good luck, he has done it.

So wherever you are in your journey and however black things may look, there is a gleam of hope somewhere, so keep going everyone and good luck to you all,

Much love, Mari xx

[RozParticipant]

I'm so glad to hear of your sunshine:-)
Give Steve a pat on the back from me, I hope your days ahead continue shining brightly for along time yet.

All the best to you
Roz

[tomParticipant]

Way To go Steve and Mari, and that Bike ride is more than an "Onwards and Upwards".

Great news and am sure newbie's and us oldie's will have perked us up 😀
and am sure when you were on the finish line and watched Steve cross it am sure you had a tear or two.

Well done to you both and thanks for the GOOD NEWS 😎

Tom One "Onwards and Upwards" thinking about getting a Bike :-/ xx

[mhnevillParticipant]

Dear Mari

Great to hear of Steve's success. Congratulations to him!
Thanks too for such a positive and encouraging post.

I was also diagnosed following a tumour on the spine (Sept 10). I have not gone for early chemo, but it remains there as a threat/promise! Can you remember what Steve's paraprotein readings were when he started on chemo?

May Steve's remission be very long and his energy levels remain high.

Love to you both.

Mavis

[DaiCroParticipant]

Wonderful news Mari,

Please don't feel that good news might be upsetting for those who have not managed Steve's success, quite the opposite, it is always a boost for me to see someone doing well off piste. 🙂 😎

My SCT, supposedly in the top 10% of responders, only got me 10 months and was therefore considered a failure… but I am now on Velcade and doing marvellously well by reducing my footprint from 264 to 13 in two short cycles… so it seems I do well will treatments (as I did with my CDT) so upwards and onwards from me and the same for Steve… just different routes. 🙂

Dai.

[MariParticipant]

Thank you for your comments and words of encouragement everyone

[b]Roz[/b], it is so good to see you posting here again, I know things have been tough for you, but your rose garden sounds a lovely idea and I hope you are beginning to find things a little easier with time.
Dead right [b]Tom[/b], I did shed the odd tear but my daughter let on to Steve and I have not heard the end of it! Glad all is well with you.
[b]Mavis[/b], Steve's paraproteins were 33 when he was in hospital just before his back op. He had seen his consultant a couple of times with rib and back pain but they said it was not myeloma related because the PP's were not high enough, 17 in July and 24 in October, by January the plamcytoma had made itself painfully obvious and he was rushed in for surgery.
[b]Dai[/b], I have followed your story particularly as you were just preparing for SCT when I found this site. I followed your joy when everything went well and when you drove down to Kent for your son's wedding ( I think) and also with sadness I followed your relapse and subsequent velcade treatment. I am so pleased that you are responding so well to treatment and hope that this means a lengthy remission for you. Velcade can be a wonderful drug when it suits you I understand. As I think Roz said, keep fighting the fight everyone,

Love Mari x

[brochoParticipant]

Hi Mari wow! Thanyou for sharing with us it really does lighten the load to hear of someone doing such an amazing feat after all he has been through Mind you I think you played a big part in his recovery , you make a great team !!Steve must be a very determined man , I cant even ride a bike to the end of the street not due to myeloma just have never managed to ride one !!!Pathetic I know Heres to a very very long remission and many more bike rides love Bridget x

[MinParticipant]

Well done that man. I love to hear of success stories and I am sure it is in no small part due to your encouragement Mari. Hearing of someones achievement with mm is just what we need.
At any time of the journey there is doubt, but your news blows it away.
Love Min

[eveParticipant]

Hi MaRi

I just cannot imagine it,London to Brighton,56 miles is it,with that great big hill you have to ride up,it gives us so much hope.he must be fit.
Thank you for your post,my husband is on his 5th cycle of ctd and had complications with pneumonia,some times I just cannot see any progress,and then some one posts with such good news and its wonderful,gives you that hope back again.thank you eve

[michelleakitt29Participant]

Hi Mari

Please give Steve a HUGE WELL DONE from me, that is such fantastic news to here. Dont think i could have done that and im the fit healthy one. You must be soooooooo proud of him.
with much love michelle x x

[shirleyParticipant]

Big massive well done to Steve,you must be so proud of him,i'm a mm patient,and so wish i had the energy to achieve something like that,. It trully is an inspiration to us all,keep it going Steve and well done again.Best wishes Shirls x x x 🙂

[AmelieParticipant]

Great to hear, Mari!

My friend is doing very well too. In August, almost exactly one year after he was discharged from the hospital, he will be conducting a great concert. I am so grateful that it is possible.

Bridget, you are not the only one who is lacking skills – I can't swim!!!

[DaiCroParticipant]

Well done Steve,

That sort of energy and mobility is a testament to good medicine and Steve's iron man will.8-)

I have come to terms with the fact that 'that' Dai Crowther has been confined to history and that this one is just happy to be able to walk around unaided… although I must admit that I have been 'banned' from trying to recapture my 'action man' status.:-)

I was promised pins for my arms and left femur… before my SCT… So I am going to re-approach the subject once I get my Velcade aided 'CR'. Anyone else had them?

Dai.

[CarolBradley1Participant]

Great to hear positive outcomes although it´s plain that a huge effort and a mouuntain of determination has gone in to this. Well done – you must be so proud. Another example which spurs me on to grit my teeth and keep horse riding even if it´s at not quite the level I used to have – just good to keep moving.
Congratulations.
Kind regards Carol

[zasrsParticipant]

Hi Mari

Well done that man!!! I did the london to brighton many years ago could not move the next day!!! i was i think fairly fit i think. Ditchling Beacon what a killer.

much love sarah xx

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