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]

No Dai you are not wrong I put my previous post just after yours! So there must be a gremlin somewhere. How are you doing with the revlimid?
Love helen

Hi Mavis and Tina
I am on the myeloma xi trial and had the revlimid instead of thalidomide – they are similar drugs. I'm back on the revlimid as maintenance after transplant and it still makes me tired.
The dex gave me sleepless nights and a few days of sleepiness and low mood after it finished, (you have four days on then a few days off it.)…[Read more]

Hi Andy
Thanks, sorry I didn't spot you there and it was good to meet you too Keith. It was my first info day too and I was surprised at how much I enjoyed it
Love Helen

Hi Chris
Good to hear your stay in hospital was short and treatment progresses, look forward to seeing the wedding photos
Helen

Dear Bridget
Eve is right, what words can we use to share your feelings. You must be reeling with shock and sadness. I so hope something else can be tried to keep the disease down.
Remember always how much you are loved.
Love Helen

What a romantic! I think it sounds absolutely fabulous, i can just imagine the expression on your wife's face.
Love Helen

Hi David
skimmia and photina would be good too, I don't know leucothoe, in fact photina would be very striking, don't know how expensive to plant a whole hedge mind! Viburnum is cheap and you can strike it easily, but it's much less organised as a hedge and can be straggly. We will need to see photos of these gardens when planted.
Love…