Poor Peter and poor you too Min,

There can be no excuses for such poor care, not being flagged as neutropenic is detrimental care and someone should be held to account. The one thing Peter does not need right now is infection and they should be taking every precaution… so let's hope they can sort his neutrofils out sharpish so he can carry…[Read more]

Hey Mai & Bruce, I missed this somewhere aong the way…

Great to hear you playing, sounds excellent… 🙂 😎 makes me want to cut and run to Cornwall… if only it were so easy.:-( .

Keep up the good work… and hopefully we might meet up somewhere soon.

Dai.

Hi Keith,

I am surprised to see that you had to go the full max with Velcade but if its brought you in sight of your 2nd SCT then it will have been worth it.

I am fortunate that it seems I might achieve CR after 3 Cycles after a dramatic plunge from my starting point of 264 kappa light chains down to just 13 after 2 Cylces… but that's…[Read more]

Wonderful news Mari,

Please don't feel that good news might be upsetting for those who have not managed Steve's success, quite the opposite, it is always a boost for me to see someone doing well off piste. 🙂 😎

My SCT, supposedly in the top 10% of responders, only got me 10 months and was therefore considered a failure… but I am now…[Read more]

Hi Roz,

Just a quick enquiry to find out if you have taken your south coast 'memories' holiday yet?

Dai.

Thanks Michelle,

I am hoping that I'm down to zero before the next cycle and that cycle 4 will be my last… but as always I will be guided by my consultant and if she wants a 5th then so be it… I don't want to rush into a remission on a weak basis.

Please pass on my best wishes to your Mum, I hope they manage to re-kickstart her Revlimid,…[Read more]

I am all for a memory book, my children 34,30 & 26 presented me with a set book from W.H. Smith to fill in at my leisure three years ago – it remains blank but I should make a start.

I am glad that I have left it until now because it takes time to focus on what is general memories and what is important nitty gritty. The set book will be fine…[Read more]

Thank you friends all,

My relief that it is working was all that mattered when my consultant she say yes! But then the 13 bit blew me right out of the water – I was stunned. 13, one three, smile, Heaven around the corner.

The 8.3 and the PN are bringers back to earth but I am strangely comforted by them now… because they are causes,…[Read more]

Hi Bridget,

I have no idea of the equivalent values of each of the different type of pain-killers… perhaps Ellen could tell us. I assume the MacMillan nurse did and that you simply react better to mst. I was put onto 80mg mst am & pm (160 total) on initial diagnosis of secondary bone cancer, primary unknown, 3 years ago.

My GP went…[Read more]

Hi Gill,

Fingers crossed indeed.

I hope that all of Stephen's discomforts and pains disappear quickly… to be replaced by renewed energy and steady improvement.

Dai.

Hi Eve… and you too Eve… 🙂

I do understand the duality of our behaviours and our moods and I suppose I might be guilty of over-reacting… but I'd rather fall flat on my face… time and time again, rather than watch one of ours fall by the wayside because we didn't see the warning signs, :-/ 🙂

I wonder how many carer's have done…[Read more]

Hi Angelheart,

I am sorry if you think you have been ignored… unfortunately your post sort of wandered away in a factual section and has been unlikely to have been seen by most of us on the site.

Twice welcome, please come back and say hello. 🙂

Dai.

Hi Heath,

I am not familiar with, nor have I ever heard of PCL and I thought that my knowledge of blood related diseases was pretty good. I am heartened to hear that you got so much 'extra time' with Sue… remarkable given the prognosis and the accepted mean rate. 🙂

But I am aware of it now and will keep a keen ear out for any other…[Read more]

Hi Jane,

Welcome to our small but very supportive world. I truly wish you were not here and I hope that your Mum can get through her CDT without too much more side-effects… it does work marvels and when she is though the other side she will know that it was worth it.

As I said, I truly wish you were not here… but as you are and re:…[Read more]

Oh Angelina, I am so very, very sorry and deeply saddened to think of John having to suffer such a miserable and disorienting time… never mind the amount of pain he must have felt in order to keep on forcing down the medicine. I am glad for you all that he is recovering and that he has no recollection of his state and behaviours. I hope that…[Read more]