[DaiCroParticipant]

Hi Gill,

I remember we carried out this exercise just after we moved to this new board from the old one and it was very useful and broke the ice for a lot of people. So:

My name is Thomas David Crowther but I am known as Dai (Welsh diminutive of David, equivalent of Davy – not Dave). 🙂

I am 59 years old (Xmas Eve baby) and look forward to my 60th Birthday later this year. I am married to Janet whose age is [b]not[/b] for publication but her unconditional love and support is… and that I will publish and be damned. 😀

I have 3 children… Rebecca 36 (with Liz and Matthew 16), Amy 32 (professional singer, with partner Ludo, currently in Cape Verde but home for the Summer Season – Ya! And Ross 29 (with Kelly and Owen 2 and Ethan 7 weeks). Janet has 2 children… Kes 37 (with partner Lee) and Kirstin 34 (with Andy and Alfie, 7 in May and Edith 5 in April). 🙂

Before MM we had a historic pub/restaurant in the small central square in Fishguard, Pembrokeshire. I ran the pub and Janet ran the restaurant. The pub had a 50/50 food/drink split. It was very quiet in the Winter and busy, sometimes manic in the Summer. Spring and Autumn were steadily busy… the kind of 'busy' I could have gladly dealt with all year round. 😎

I had also just launched an audio-book publishing company 'Dragontales Wales'. With stories of Welsh folk-lore on CD's. Initially I had 3, 1 hour long, CD's with 4 stories on each CD. My website had a fully operational, PayPal, Credit Card payment centre with story summaries along with a sample of each story. The intention was to get 'Dragontales' established within 18 months and then look to move into it full-time. I had good support from Welsh Business Initiatives that included international contacts with ex-pats around the world as well as Tourist Information Centres and tourist centres such as castles and other such visitor centres. We launched on March 1st 2008 (St.David's Day) and I was diagnosed with Secondary Bone Cancer, Primary Unknown on April 19th 2008 following a CT scan at our small local hospital. I was whipped away to a bigger hospital 75 miles away the same night for 7 days of intensive RT on the spinal tumour found by the scan. Everything stopped in its tracks and never restarted. 🙁

I have completed my 1st novel and I am working, slowly and unsteadily on my 2nd (I also have a book of Welsh Folk-Tales… the scripts of my audio-books). I am also a songwriter with a portfolio of approximately 150 songs (nearer 200 but the other 50 not recorded). 😉

I have worked as a progress clerk, coalminer (ropefitter), mining union official, college lecturer, Musicians' Union Area Officer, Guesthouse, Coffee-shop and Gift Shop proprietor and Theatre Manager (and Landlord and Audiobook publisher as above).

I ran various Folk Clubs for over 30 years and played in several folk bands and ceilidh bands. I also played and gigged (at one time semi-pro) in various MOR and folk-rock bands, duos and as a solo artist during this period. 🙂

I was a keen hiker and walker for many years completing walks up many of the largest of our British mountains, including all the big ones and a few in Ireland but unfortunately none in NI. I can honestly say that most of my most joyous activity moments came during these walks. 😎

I played local league football for 4 years before finding out that I was much better at hockey which I played for 15 years and coached for a further 5 years. By the time I was diagnosed I was a couch potato, occasional golfer and dog walker – so MM didn't rob me of any major particular activity. 😀

So that's me – as usual far too much information (its DexDay tm) so don't think you have to compete… but it would be good to hear a bit about you all. 😎

Much love to all

Dai.

[eveParticipant]

Hi Everyone and Dai

My name is Eve I use to be Slims partner for 31years,no intention of marrying felt we did not need it,how wrong could we be.
We married in ITU on the 26 of April 2011.

In Febuary 2011 my husband was diagnosed with Myeloma.

Slim and I are both retired,and have had a wonderful life are last 15 years have been spent traveling in our moter home,we decided to sell our business and have some life why we were young enough to enjoy trips to many places and I am so glad we did,because if we had left it until Slim was 65 we would not have been able to do it,Slim is 68 and I am not telling you how old I am,since Slims SCT he now weighs 70k and hair has grown back dark and curly,so he does look younger than me8-)

He had 10 months free of Myeloma,and after a BMB we have been told he is out of remission,so we wait for test results,full body ex rays and MRI scan.

At times life seems so unfair,but I do realise how lucky we have been,we managed to get to France,go on a cruise plus spent 5 weeks in New Zealand since Slim had his SCT.
My motto must be never put off things for another day,time is something so valuable now.Eve and Slim.

[DaiCroParticipant]

Hi Eve,

I am so sorry that Slim has relapsed so soon, I was hoping and wishing for at least a couple of years for the both of you… but there you go and Velcade will most probably be next. It is an effective treatment and much easier now that it is delivered subcut… no more cannulas.

Did Slim get enough cells for a 2nd SCT? I know that sometimes they say no to a 2nd SCT if the first one hasn't produced a long enough remission but you never know. I had exactly 10 months as well and I was feeling great when the relapse came, I couldn't believe it. The appearance of a tumour on my sternum sorted that question out but Velcade saw that off within a month. I got full remission from Velcade after 6 Cycles but it came back pretty quickly.

Ask your consultant about the Myeloma 5 trials which are just starting… it's Cyclophosphamide – Carfilzomib (Kyprolis) – Dex… its being administered by MUK and they are looking for 300 trialists. Kyprolis was licensed in the USA last Summer and the results of this trial will help towards getting it licensed here. Although I am doing fairly well on Bendamustine it is slow and it keeps me locked in neutropenia and I am virtually trapped in the house… so the Kyprolis trial (which I narrowly missed out on the original trial last year) is something I am going to press for. There are details on the home page (you have to dig a little) so go and look see.

All the best to the two of you:-)

Dai.

[jmsmythParticipant]

Hi Eve

I'm so sorry that Slim has had a short remission and has relapsed. My best wishes to Slim and hope they find a treatment that will help

Best wishes to you both
Love Jean x

[eveParticipant]

Hi Dai and Jean

We are suppose to be getting all these new people to tell us about themselves plus post a picture!!!!!

Dai Slim has had CDT plus Velcade next should be Revidimide,!!!!!! We though we might get 2 years !!!,,the only way we new it had returned was I asked for BMB as it does not show in blood or urine!!!!!!!?. We do not know if he will be eligible. For any future trials.plus it has come back so quickly. From being in full remission to 10 percent in bones, is 7 months between BMB,does not bode well. Love Eve

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