Dear Michelle
So so sorry to hear about Phill, he was too young to leave and you must be heartbroken. I wish you all the strength you and your children need in the days, weeks and times to come. Remember all the good things and talk about them to your children keep him live in your memories.
love Helen

Hi Debs
No I understand trying to distance yourself from mm, it's a bit invasive on the mind! And escaping from it as much as possible is probably a good idea. I'm ok, getting better, the pneumonia was a set back which I didn't expect but I'm good now. I'm also sporting a short' 'do' which I quite like, though I wouldn't have chosen it. Like you…[Read more]

Hi Dai
I could never work out what was doing what when I was on the rev/dex/cyclophos combo but now I'm on revlimid only, I have the running nose, especially at meal times, tingling mouth and trembling fingers, sudden fatigue and occasional headaches i think when I've done too much.
Being a girlie I can't comment about the hesitancy! Different…[Read more]

Dear Nicola
How tremendously sad for you all, after so short a time. Remember he will be with you every time you think of him and how much he was loved. Chin up and live your life well in his memory.
Love Helen

Hi Debs
I'm delighted to hear you are doing well and take my hat off to you organising such a splendid event.
Where do we post stuff to if we want to send you raffle prizes?
And how is your hair doing? Shall you have a delightful coiffure in time for the event – very clever of you to pick the date for when you would have chic short hair.:-)…[Read more]

Hi Theresa
Thanks for explaining about the trial, I understand a little bit about how some of these proteins work and the race to find a drug which switches off the malignant plasma cell production is important for all of us. I hope it works well for Peter and that he is recovered from the work up.
You are allowed to be negative, it's a very…[Read more]

Hi David
Very nice , good all year round by the look of it, it's not one I've tried growing. I just bought some snakes head fritillaries and some alliums to brighten up the pots on the terrace. I'm going to have flowers out side the window all the time now! Even if it's expensive, it makes me smile. Even when the blackbirds uproot the…[Read more]

Dear Joe
It's such a hard time, you feel as though your heart is going to burst with the pain, but you have done the right thing, even though it is so vey difficult.
Keep phoning your mum, she will understand, if I were in her place I'd be feeling so sad, but also very proud of you and your sister for trying to get on with things.
Your dad…[Read more]

Well David …… that gave me a bit of food for thought ……. I even had to go and look it up!
I hope you are getting better from your recent illness. How is the hedge getting on? I've cleared the back yard, will tackle the front garden this week
And Theresa do let us know how you get on ……what is the AKT trial about?
Bridget, how much…[Read more]

Hi Stuart again! They are not following on either, I've tried to send this to you but I think I might just be cluttering up Mavis' s in box now
Sorry Mavis
Helen

Hello Stuart
The posts are in the wrong order too
🙂
Helen

Hi Bridget
My docs are good and we have a great specialist nurse, I trust them and they seem to take aches and pains and bruises and infection seriously. Oligo just means little or scanty. I'm an orthopaedic and trauma nurse by training, and was a ward sister for 15 years followed by a move to research. I've been a clinical research nurse for the…[Read more]

Hi Bridget you just ramble away …..i like it…. And i don't do face book, promised the kids i wouldn't interfere with their domain a few years ago it's a bit limiting now though… Maybe i should try tweeting…. Anyway i'm rambling now…… Its catching…!
…too much knowledge…. Well it's a double edged sword isn't it? It means you…[Read more]

Hi Bridget how are you now?
Love helen

Hi ?
You are not burdening us with anything. Just spreading out the load to make it easier to carry.
It must be hard to bear after all this time on the revlimid, and families are not easy to share the anxiety with either, we don't want to hurt them or make extra demands, that's why I like this site too. Just have to keep plodding on and…[Read more]

Hello Terry and Fadia
As I said in my first post these are serious questions for the experts. The way to second and specialist opinion is via the primary consultant or GP.
Helen

Oh Nicola how unbearably sad for you all, stay with him as much as you can over the next few days. I do hope you can get him home. It has been such a short time for him, such aggressive disease. I am sorry
Thinking of you
Love Helen

Hello Nicola
Hope your dad has improved when you see him next and you manage to look after yourself too. I've been on the lenalidomide for a few months now, both pre and post transplant. I'm a bit tired and had a few recent infections but it has worked well for me so far, I'll keep my fingers crossed for your dad.
Helen

Good luck with the treatment Andy
Love Helen

Dear Terry, Fadia and Mavis
I'm very interested to hear what you have to say about this but please remember that when you are in the watch and wait group, while it is a time of great uncertainty, it is not the same as being told that treatment is needed to save life and prevent major organ damage.
When I was told that I was at end organ stage,…[Read more]