This topic contains 12 replies, has 4 voices, and was last updated by 
john62 11 years, 2 months ago.
sct hi all new to this spent xmas in hospital SCT ok Back to work been reading all your messages dont do computers so help me a bit love to you all john cadwallader
Hi John and welcome to the club that I'm sure you don't want to be in. You are in the right place for advice and support from a great bunch of knowledgeable people. What part of the country are you in? Have you had SCT or waiting? My hubby is waiting for a date for SCT.
Best wishes to you
Love Jean
hi jean thanks for your reply
I was diagnosed in march at stage 111 mm
had 5 months of revlimid ex
10th of december SCT
OUT 30th of december back to work doing bits this week
I live in Chester, would be good to talk to your partner as i found most of the SCT was in the mind but we are all diffrent. i find that turning a negative into a possitive is a great challange. just looked at a few messages and there are a few people that have had the same treatment as me over the last 12 months. on avreage the 4 of us look quite possitve.
One thing i did was refrain septryn auntibiotics and i went on the nebulizer instead as i found that the septryn killed the backteria in my gut at the moment my gut is the best its been for 12 months
home no 01244403610
feel free to call
Hi John
Boy that was great about the SCT and back at work ???? well done you. Frank smouldered for 6 years and then started CDT in June. He doesn't come on the forum and there as his attitude is that his consultant will tell him anything he needs to know. He's not like me I need to know everything that I can about this awful illness. We are off to consultant tomorrow (that's if we can dig the car out of the snow). Frank is not sure about the SCT. had they have done it when he finished the CDT he would have went through it but as the weeks have gone by he's had time to think about it and now he's not sure. He has to make the decision I can't help with that. Take car
Jean
Hi John
A warm welcome to the site.
And WoW back at work so soon?? am surprised the Dr let you go back???
But hey Ho we all do it in differant ways, Just stay well and stay strong
Tom Onwards and upwards
Hi tom
thanks for your post
Yes back to work self employed got to pay the bills, but allso there is an anger that needs to be turned in to a positive.
Living on my own has its advantages and somtimes disadvantages,
you ar the people i listen to but if i am not well i will stay in bed.
tom what do you think randomisation
1 no maintenance
2 revlimid
3 revlimid with zolinza ?
onwards and upwards youv got me at it naw
john cadwallader king of gwyned love you all xxxx
Hi John
Your welcome, Well SCT and back to work so soon and living on your own WoW now to be honest that must be blooomin hard work, Gosh I dont know how I/we managed without the young bride and our Family and Friends to look after me.
To be fair John I dont think of it much I am Lucky enough to just have my CDT then SCT and now drug free, am the sort thats Happy if my Dr is Happy 🙂
Keep well John
Tom Onwards and Upwards
John
I echo toms thoughts, wow doing all that by yourself and back to work. I know what you mean about the bills but aren't there any interim benefits that you could claim so that you give yourself time to recover a bit more? You must get so tired? My partner Colin has myeloma.
Are you asking about the randomisation because you will be randomised? Following sct. My Colin will be too. We don't really know which is best, we just hope they we'll get whatever turned out to be the best! Sometimes I do wonder if its the body that is the true determinant of what is successful or not.
Good luck with your remission, you are very brave!
Vicki and Colin x
Jean and frank,
Is frank not going for the sct now? It's a really blow when you have to wait so long in between because it gives us all time to think!
Vicki and Colin x
Hi Vikki and Colin
A
Thank you for your thoughts for us. We saw registrar yesterday (we both think consultant is avoiding us). Bloods were ok PPs still at 2 but still no bed. Wouldn't have been able to admit him any way as he has a terrible cold. He keeps saying "IF I have SCT". As I said to John he has had too much time to think about it. I have tried to get him to talk about how he feels about it but just tells me that he will wait and see ????
Colin hope you are feeling good
Best wishes to you both
Love Jean x
Hi
vicki and colin
I was so happy to se reply this morning.
IT takes me say two hours to post message no confidence,
Put me in a meeting with the council or the environment agentcy thay wont get aword in,
My myeloma is my problem not my secreterys,
you r right the body is the key
but the mind is the other key which gives you mental attitude it takes all our lives to develop this and the things that have happened will determin its strength and we carn change this now,
I love life and one day will die with a sword in my hand not in the armchair
use it or lose it love to you all john cadwallader xxxxxxx
king gwyned
use it or lose it
Hi
jean and frank
pp 2 it could stay like that for months see if you can get to zero
befor SCT NO PANICK
love you all john cadwallader king of gwynedd xxxxxx
Hi every one its John, The hundred days are coming up, Starting to get a bit frightened, But when i read all your posts I have to be strong for all you guys..You are remarcable people, and this is a problem you didnt choose.But together we seem to be achieving something. I feel ive known some of you for years, and i go to bed every night thinking of you which helps me drop of. I feel we are an army, and we are all fighting the same enemy. This is not me typing this out as it would take me weeks. I wish i could give more advise, but feel that some of you are way ahead of me.But tonight because ime not on my own i just feel the oppertunity to get in toutch. I went to a funeral of my freind on friday who died of lung cancer
he was diagnosed in July, I was diagnosed in April. We spent some time together, and i found that we both knew what to say on approaching the subject of our complaints. I have been a bit depressed, but today i realised that i am still hear. A song come on the radio and it was by Arlissa.. Called sticks and stones For some reason this seems to give me strength, and it makes me feel good and happy. This seemed to be the tonic i needed rather than counciling! You must all listen to this and tell me what you think?? I may be a bit mad, But im the happiest ive ever been in my life..As every day is worth double of what it used to be, Wish my friend could call round a bit nore often, and then you would hear from me a lot more. Is that a good thing ??? Or a bad thing. As you probably know i came out of Liverpool hospital on the 28th December following my stem cell transplant, Back to work in 2 weeks, All the normal things that most people seem to get, but had to push this anger into energy, So i had my first game of babminton 5 weeks ago last monday. To walk onto the court and to realise im still alive and appreciate that somebody would have the time and patience to give me a game, I must admit i had a tear.But as soon as the shuttle cock came over the net my attitude completley changed from appreciating the fact that im hear. I wanted to be a winner. I find that is the same with this disease, To appreciate that weve got a chance the survival attitude takes over to try and achieve more, and beat the apponant or to stay the other side of the net as long as you can.
Trying to get to some of the info days to meet some of you people doesent matter to me where they are, I have got a mentor, and he lives down south
Im hoping to go and see him soon..as he has helped me a lot. Are any of you going to the info day in Leeds in March ????? I went to manchester in September, wanted to say things but hadnt got the bottle! Just need a little push. O.K Im of know love you all and all your posts are in my mind beleive me. Please feel free to phone me on 01244/ 403610
John Cadwallader King of Gwynned xxxxxxxxxxxxxxxxxxxxxxxx
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