Hi and a warm welcome to you both, although I´m really sorry that you had to join us.
Your quite right to be positive there are lots and lots of new and exciting things coming on line and much more developing.
I had my sct last February 2011 and I won´t say that recovery has been quick I am certainly improving all the time. Today I have been out horse riding cross country ON MY OWN which would have been unthinkable during the last couple of years.
Hope all goes well for you.
Best wishes
Carol xxxx
Thank you so much Eva for letting us know.
Could you send her lots and lots of love and best wishes and let her know we shall be thinking of her over the next couple of weeks and sending cybernet "hugs". Hope all goes well as possible
Love Carol xxxx
Hi everyone 🙂
I do hope you will understand if I say a big blanket THANK YOU for the lovely replies I have received. I have tried to find all those who have contacted me apart from Andy (will try today). I don't seem to be having too much luck but have to admit it could be that concentration is not really up to much as I am struggling to find the right pain control and those I am trying are making me feel quite "wobbly" and a bit out of it I'm afraid.
Could be also that I don't think I am really getting to grips with Facebook as they seem to constantly change it – I might be better sticking here as I understand things here!
Best wishes to you all
If I get any friend requests I will accept of course.
Love Carol xxxx
Hi Helen
Having been through exactly the same as you last February I really do sympathise – the treatment really does dry your skin out and the lines look as if they are there to stay. However, I can honestly tell you they will go away but you might have to work at it a bit.
I felt very frail in myself but I did try to eat as well as possible with a wide variety of foods including cheese, oil, red meat. eggs and fruit and veg. I gave up completely on alcohol but instead made sure I had things like fizzy water and melon to rehydrate the skin (lots of water). I also tried to keep active out in the fresh air – slowly at first and then buiding up. I think it really did help avoid infections in the early days and also made me feel so much better.
Regarding the hair I Know they tell you NOT to tint it so as soon as I had about an inch of hair I used one of those tints without amonia and chose a soft baby blond which didn´t look too harsh and seemed to look quite natural even on really short hair. I also put lots of conditioner on every single time I shampood my hair.
Regarding nails I only had the blue lines on my toes so I just covered them with a pretty nail varnish so I didn´t have to look at them! So far I have kept my hand nails quite short and have now started using nail varnish again now that they are in better condition. Up to then I was leaving them without any nail varnish and using lots and lots of handcream rubbed on and around the nails too. I also used rubber gloves for wet work and tried not to let my nails come into contact with chemicals etc.
I do eat kiwi fruit and yoghurt every day and things like this seem to help with all the dry skin, scalp and hair problems.
Well, I think that´s all the advice I can come up with at present – please try not to get too despondent as you have come through a pretty difficult time and deserve to pamper yourself a little bit (well quite a lot really). Things really will improve over the next few months – honestly!
Very best wishes
Carol xxxxx:-)
Hi Eve
Have been lucky enough to spend the odd few weeks in Spain when well enough so have not been as active on the website as before.
Now I am back home I will keep popping in.
Hope you are keeping well and things are not too bad.
Best wishes
Love Carol xxx
Hi Tony
Thank you for your lovely reply – yes will certainly stay in touch – please let us all know how you are getting along.
If you need any practical advice or just need to talk there are some lovely people with lots of experience on this website. I found at times I had questions that seemed either too ´silly´¨ or plain daft to ask my medical team I came onto the web site and asked there and usually there was someone else who had experience enough to answer/reassure me.
Take care and don´t hesitate to ask away.
Best wishes Carol
ps It´s orange juice!
Hi
Just wanted to welcome you to the site although I am so sorry that you have had to find us because of bad news about your nan.
She is so lucky to have you and I get the feeling that once you have had time to absorb some of the shock you are quickly going to find your way around all of the information that is available to us.
I know it is very hard for you at present – I have the same illness and always think that my husband who cares for me has a much harder time of things than I ever do.
Keep your chin up – we know its very hard but you will get lots of support and help from the lovely people on this site.
Thinking of you both
Best wishes Carol xx
Hi
Only just catching up with posts but wanted to say a belated welcome.
Hope you are both coping and coming to terms with everything (and there is such a lot isn´t there?).
It has been such a relief to be able to talk to people in the same boat – they are so supportive and sensible that it makes even the most difficult times seem much better.
Anyway, sorry to meet you here but now that you are I hope that this web site is of use and help to you both.
Love Carol xxx
Hi Kirsty
Sorry that I am only just catching up on the latest news on the site and so didn´t welcome you earlier. Anyway, hope things are sinking in a bit now and that you are being well looked after.
Keep calm about the transplant (easier said than done I know). As others have said not pleasant but mostly it´s just tiring and you will be very well looked at.
You are so young to get this that I really feel for you – but at least being so young you probably will cope with the physical effects of the treatment – hope so anyway!
Try to keep positive and keep doing the things that have always given you pleasure in the past or even try doing a new hobby. If you can keep active before the transplant it will make recovery much quicker I think.
Anyway, my thoughts are with you and hoping that things go well.
Love Carol xxxx:-D
Hi Jean
I know how worrying this can be but can only hope that they are sorting things out for you about the scan.
I don´t have much else to add but just wanted to know I wish you well and hope things improve soon.
Love Carol xxx
Hi David
Just read your good news and am so pleased for you – phew what a relief! I bet you feel like a new lease of life has begun.
Thank you for letting us all know and so good to hear that you are not in pain. Long may it continue!
Best wishes
Carol xxxx
Hi Tony
Just wanted to send a word of welcome although so sorry we have to meet here.
You must feel pretty rattled at present so hope this helps. I was diagnosed many years ago (2005) and after chemo and stem transplant last year I am now doing really really well.
Keep calm, keep your chin up – I was on the myeloma trial too and it does ensure that you not only get access to new drugs etc. but that you are monitored closely so any probles will be dealt with swiftly – eg. infections.
I have found this web site to be such a help when I was really worried and the people here are smashing and we all truly understand the worries, frustrations etc.
Thinking about you.
Carol xxx
Hi
Just wanted to welcome you to the site although sad for you and your Dad that you have to be here.
Hope things improve soon.
Thinking of you and hoping for the very best.
Love Carol
Hi Caz1
Sorry to have to meet you here but did just want to say Welcome!
Boy, you really are having a rotten time of it all at once and must be having quite a lot of pain.
Hope the chemo goes well and your leg mends quickly too.
Thinking of you
Love Carol xxx
Hi Janet
So sorry to hear your news – we all dread it and wonder how we will react when it comes.
Things have changed so much in five years and perhaps you could try lenalidomide or velcade – there are quite a lot of new things now.
Anyway, you try and look after yourself and make an appointment to ask your ever growing list of questions . I am sure they will be happy to help you.
Thinking of you at this worrying time.
Love Carolxxx