[HelenParticipant]

Dear Wendy
I'm keeping my fingers crossed for you that this is not a relapse, but a blip. I hope that your training for the triathlon can continue uninterrupted. Did you do all this exercise before the myeloma or is this a new hobby?
Love Helen

[HelenParticipant]

Dear Keith
Like Eva and Dai I'm really sorry to hear this, I hope CDT offers you some space.
And Dai it's good to hear you are handling the bendamustine well enough to get your writing done.
Love Helen

[HelenParticipant]

Hi Ali
A impressive response from a 9 year old, they can be so astute when they want to can't they? I'm on my week off Revlimid and feel much more like eating again, now catching up on the advent calendar and the Christmas chocolate that I couldn't face at Christmas!
One thing I do notice is when I'm about to get an infection, I don't feel like eating much, so it might be a warning sign of sorts too.
No holidays planned yet, but looking at things for March!
Love Helen

[HelenParticipant]

Dear Paul
Not a club you ever wanted to join but welcome. Do look at Vikki, Chris and most recently Megan's posts about stem cell transplant, they give you lots of information about SCT, in diary format. I had mine 16 months ago and am doing well since. It is a scarey thing to go through, but more about enduring the treatment than anything else and trying not to let the people round you get too frightened for you when you feel and look so ill. It is a procedure that makes you have to just sit it out, often on your own while the process happens. They give you the chemo, it destroys the bone marrow, they give you your stem cells back like a blood transfusion and you wait for them to start regrowing again. It takes a few weeks, you are very weak for a while and then hopefully you pick life back up again. There is a really helpful book about auto transplants available.
Keep in touch, ask questions, know what to expect then its not so scarey.
Love Helen

[HelenParticipant]

Dear Keith
I'm so sad to hear how fed up you are. What a struggle each and every day must be for you. I do hope they have something else to offer you on Friday and that the pp rise is indeed just a blip. I am thinking about you and hope to hear good results from you so very soon.
Love Helen

[HelenParticipant]

Dear Sue
As Ali and Tom have said, get in touch with your Gp and get referred to the nearest hospice, i worked in our local one for a while and a few days of respite was often a godsend to families, especially when pain control was an issue. Even a few days break so you can recharge your batteries could help you both. Sometimes there was a waiting list of several weeks, but generally it was a needs based referral so you need to make your request as soon as possible. It's not always easy to know what help you need when someone just baldly asks the question, especially when you are so traumatised by the sequence of events themselves. I do hope you get the help you need soon. Love Helen

[HelenParticipant]

Hi David
Happy birthday, wishing you many more. I've had cramp a lot over the last few years and nothing I've tried seems to work very well. I now resort to standing barefoot on the coldest floor I can find! This doesn't help when I get cramp in my hands or abdominal muscles however! I will be trying all the above as well.
Love Helen

[HelenParticipant]

Hi Ali
Thank you, I like to think we girls scrub up ok when the fancy takes us! We were at a wedding so pushed the boat out a bit, it was so lovely, but way too close to Christmas (22 nd). I hope you and the family had a good time? Less worry this year?
Re the Revlimid, my relationship with food has been poor since starting it. I have lost my old sense of taste and smell and quickly feel full when I eat. I also find fruit and veg more palatable than anything else, no idea why. I'm finding the first 2 weeks of the cycle the best and things tail off badly in the 3 rd week of the cycle, then I stop, get better again and start all over. I am so much better though, even though not as I was, I'm continuing with it fairly optimistically, still on the higher dose of 25 mg.
Dear Carmen I hope you continue on watch and wait for a long time, as you see I probably had several years of smouldering before a reason for the anaemia was found.
Love Helen

[HelenParticipant]

Dear Tom, Ali and Vikki
Thank you, I like the sparkly bit, note to self, add more!
I still don't know why I can't improve the energy but I'm not letting it stop me from doing stuff. I also am celebrating any event going, and Vikki, hopefully we will soon hear of your adventures as Colin recovers and gets the wanderlust bug!
Love Helen

[HelenParticipant]

Awww Keith you are welcome, I expect to see you at the info day next year, still supporting others as you have so selflessly done for some time now. Hope the blood transfusion gives you a boost for new year.
Love Helen

[HelenParticipant]

Thank you Mavis and Alex, it is certainly a tunnel from which I am beginning to emerge, I dare to hope that I am lucky enough to stay fit for some time now, Still no stamina! It's as though my 6 heavy duty batteries were replaced with one small aa rechargeable! I run out of power so quickly it's annoying!
Wishing you both a prosperous and healthy new year.
Love Helen

[HelenParticipant]

Dear Keith
Glad you had a good Christmas, I had an extra guest who was so picky with us it might have been better if she'd stayed somewhere else! But we survived it. Whooping cough now gone, got a cough and cold starting now instead, whoopee!
It's really odd how different each of us react to the drugs and the disease, speaking as one who seems to have been sledgehammered by the drugs into remission, I still have a neutrophil count of 1.4 and white cells of 3, everything else is totally normal. I suppose the drugs and the mm cells messing around with the bone marrow means it doesn't respond in the way it ought to or used to do? i hope the bendamustine does its work.have a good new year, I off to stay with friends in Yorkshire.
Love Helen

[HelenParticipant]

Dear Gill
I cannot imagine how hard it must be for you, it is these times of festival and tradition which often define who we are, and our shared experience which travels on with our children has created stability and pleasure, despite the rows and grumbles over who does what! I do hope you find some peace, the times of firsts is so difficult. Last Christmas I wondered how many more I had, I bought decorations for the tree for my husband and children, making them promise to think of me as they unpacked them, just in case.
You are allowed to feel sad and low, you would not feel like this if you hadn't loved him so much. Give yourself time to mourn and cry.
Love Helen

[HelenParticipant]

Dear Graham and Gill
Thank you for your good wishes, I'm up to my eyebrows with Christmas, but hope you both have a peaceful and lovely one albeit in such different circumstances
Love Helen

[HelenParticipant]

Hi Val
Good news indeed, I'm hoping you get lots more years, have a good Christmas
Love Helen

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