[HelenParticipant]

Hi Andy
I'm there on the 11th too, let me know when you get there?
Love Helen

[HelenParticipant]

Hi Jimmy, Phil, Colin, Dilini
I thought it was just me being tired and unable to sleep, interesting too that there is no pattern, I'm not finding one either. Still it's working so I'll take it!
Love Helen

[HelenParticipant]

Hi Vicki
This is a terrible blow for you both, i can't imagine how i'd have felt if that had been me. It is to be hoped that Plerixafor is now going to be allowed for Colin. Keep us posted about plan C.
Love Helen

[HelenParticipant]

Congratulations Wendy, from one to another. Its a funny feeling to be here, one year on and in pretty good shape, all things considered. Did you have cake? I wasn't sure how to behave, I think I secretly wanted the family to put balloons on the door and send cards! I did have a good day though. Well done.
Love Helen

[HelenParticipant]

Hi Cathy
I'm a year post transplant and what the others say is exactly right, once you have the drugs and transplant, it is a process which you just have to endure. Most of us get through it in one piece. It's horrible, I was taking anti sickness, anti diarrhoea, antibiotics, antacid and painkillers for many months, I'm good enough now, about a stone lighter, but you don't need to eat at this stage, just drink what you can. Try not to look too worried when you go in to see him, I felt very guilty for being the one to cause such pain for my family. Look at Ali's recent posts about her mums sct, she seems to have been pretty classic.
Love Helen

[HelenParticipant]

Really good news Eve, get away on those holidays and enjoy them
Love Helen

[HelenParticipant]

Hi Ali
I think the jelly beans will sit on the side for a while, but she will share them I'd say:-) And they are small so you can keep trying them until they taste right. I drove from the 3 rd week, but I didn't have a line in, even now though I don't like driving more than about 30 miles as I can't concentrate well enough, I'm still struggling with reading books!

Work…. Well I'm back to full time, 8 weeks now, it's tiring and a bit stressful and I'm a bit bored because I can't do some of the stuff I did before, but I'm seeing patients again and I don't feel too bad really. I've got a really bad cold and cough which i hope will go away without resorting to antibiotics but I'm not holding out much hope. In some ways work is a really good distraction and then I find myself feeling wobbly and can't understand why, then I remember and wonder if I'm ever going to forget for more than a couple of hours just what is wrong with me. So, I'm still trying to get my head round it all, even after 18 months.

To put it into perspective though, today I attended my neighbour's funeral. She was 48. Her shockingly sudden death from an intracranial bleed has left our community reeling. She leaves a devastated husband and parents and 4 children, the youngest is 8. Coming to terms with myeloma is difficult to cope with for both carers and sufferers but we do have time to tell each other how much we love, need and care for them.

Sorry to be a bit miserable, I'm going to return to major optimistic mode now. Look after that mum of yours and get that ironing done!:-)
Love Helen

[HelenParticipant]

Dear Dai
It's good to know someone is keeping a good eye on you at the hospital, I hope you get some answers soon. I've been back on the Revlimid for 2 months now, no pain so far but it is already playing havoc with my guts again.
Love Helen

[HelenParticipant]

Dear Teresa
I do not have the words to help, it must be such a difficult time. I love the idea that Peter is a visitor wandering through your mind. It is a comforting thought. Take care of yourself on your journey into your altered life.
Love Helen

[HelenParticipant]

Hi Ali
The down feeling is very normal, after everything and all the hype, suddenly you have to pick up the bits and try to put life back together, it's not easy. Keep reminding her that she's been through so much she's allowed to feel 'off it ' a bit. Just not too much though….! they will offer counselling if needed, and it might be! Remember too that while the docs are often very encouraging , they just look at the results and if you still feel terrible there is nothing much you can do. Slow and steady eating and exercising is the key, I walked for about 30 mins every day from the beginning. That leathery feeling in your mouth is horrible, I've become addicted to jelly beans, (though some flavours are gross), you can suck them for a long time, I found they helped.
About now she should be able to go out and about but I'd keep away from public transport and people with obvious coughs and colds, after all hospital waiting rooms are full of people…..
Anyway glad she's improving and that you had a good birthday and a bit of a holiday before the new term starts.
Love Helen

[HelenParticipant]

(with heavy irony tone) Phew Dai it's good to know that they can sort out the minor stuff so efficiently………..

hope you are mending now, what will they do about the Hb level do you know yet?
Love Helen

[HelenParticipant]

Hi ?.
revlimid makes me Very tired, I'm afraid that all I do is give in to the tiredness,
Love Helen

[HelenParticipant]

Hi Jacqui
I too have IgA lambda light chain myeloma and am oligo secretory, I was told a similar story to Tracey, though I'm without the Amyloid, I have not asked what my chromosomal risks are, I'm not sure I want to know that just yet, when I relapse I'll ask. I had my SCT a year ago. At the minute I'm in comple remission, but I'm on Revlimid maintenance as part of the myeloma xi trial.
As with anyone with this disease you have to take it as it comes, you have to ask yourself what you have to lose and what you might gain, personally I'd hit it with whatever is going if I thought it would prevent damage or slow down the disease. Good luck with your decision making.
Love Helen

[HelenParticipant]

Happy Birthday Ali, I'm guessing you will have to take the cake round to your mums today to celebrate with the family, make the most of it, it's time to start the rest of life with happy things. Have a lovely day.
Love Helen

[HelenParticipant]

Hi Angela
I'm glad Mavis was able to tell you about hip replacement first hand, as I've only looked after people with them. Once the SCT is over and you have recovered, the hip replacement should be straightforward, the damaged section is removed and you should have a pain free joint without loss of height. Many of the patients I looked after found that the pain from the operation was not too bad because the pain or joint limitation they had beforehand was so bad. I hope it all goes well for you and the next stage of your journey is without incident
Love Helen

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