Hi Bridget, what a lovely morning (the night was good too, seeing as I have been awake for most of it) 😛 .

I think you may well be right about the 'week off' but that is really, really okay… because, as you quite rightly say, if I am expecting it then it will be tolerable, with coping mechanisms cut to suit. 🙂

I expect I'll get into…[Read more]

Tom, Jo and Debs,

Thank you for your support. It has been a strange day but I have reached the end of it without any further PN attacks, although my torso, ribs and sternum feel that Popeye has been going rumpeytumpetyrump ten to the dozen. :-S

I am following advice and increasing the Gabapentin and will monitor. I can only assume that…[Read more]

Thank you Angelina.

In which case I have a nice surprise for you. 😎

I have a lot of creative irons in the fire at the moment… from getting my first novel into the hands of an agent, getting my second novel started – big gesture, I am going to write the first paragraph on Thursday. 😀

I also have a songwriting project on the go – a…[Read more]

Hi Min and Angelina,

Thanks for your concern and support… I'll be fine. I rang my support nurse and she has told me to increase my Gabapentin to double dose in the evenings and perhaps even a Amitryptiline for dessert if I feel like it.

I was feeling so good and then, out of left field, I was back in a place which I was not awfully fond…[Read more]

Hi Ruth,

Being so early in the clinical response this is definitely a case for the medics to answer. A good starting point would be a call to Ellen and the team here at Myeloma UK and be guided from there.

The strength of this sufferer/carer community that has built up around this discussion group lies in the sharing of experiences, medical…[Read more]

Hi Nicki,

It was good to see you again at the clinic and to finally get to meet Sam. He looked extraordinarily well and seemed to be bouncing with energy and life – long may it last!

Sam has responded well to his treatment and his SCT and if he gets a good length of top-end remission then who knows what will becoming available down the…[Read more]

It is a powerful piece of writing, made so for me because of its immediacy and connection to the here of here and the now of now and summed up in:'"Someday" and "one of these days" are losing their grip on my vocabulary. If it's worth seeing or hearing or doing, I want to see and hear and do it now.'

As do I… and I am quite happy to find such…[Read more]

Hi Wendy,

I've had tinnitus for many years, a throwback to the nerve deafness I picked up from 14 years as a miner. I can get it quite bad, usually when I am very tired or run down although, for the most part, I can block it out and send it into the background where it becomes an almost non-existent irritant.

Saying that I have noticed it…[Read more]

Gaye, you are an Angel. 😀 🙂 😀

You have been an inspiration, confidante, caregiver and friend to me and to so many on this board. I hate the idea of you having to endure pain 🙁 – it was the first thing said to me after my eventual prognosis back in June '09 – 'at least in this day and age, from this point forward, you will not have…[Read more]

Hi Eve,

Music complete but my vocals are very tired – I'm feeling much better after a really good night's sleep (7 hours straight , unexpected but so grateful). My sisters coming over for an hour this afternoon and Janet's on 'Big Birthday Party Duty' for Alfie (5) so I don't expect her back until 7ish – so 5-6.30 set aside for laying down a…[Read more]

:-0 :-0 and I mean :-0 …. and all that time I was blaming the medics for not turning up the gas.

You are a bad man.;-)

dai.

Gosh, you are all coming out of the woodwork now. 🙂 Liskeard is a lovely area… mind you the whole of the southwest is for the most part idyllic. I lived in south Somerset for several years and loved every single minute of south Somersetshire life.

I lived in a small village called Norton-sub-Hambdon, on a lane in the lee of Ham Hill,…[Read more]

Excellent news regarding Revlimid Jen, let's hope it continues down to cr and a plateau that will last for years. As I have noted here before, I met a woman at the Nottingham INFOday who has been on Revlimid for 5 coming on 6 years, it simply works for her with a minimum of side-effects.

I must say that after 3 years of Movicol and Micralax as…[Read more]

From 'Pat's Place' a blog from an American MM'er.

Pat?s Place: For Me, ?Watchful Waiting? Becomes ?Hopeful Waiting?

by Pat Killingsworth
I have written about the challenges and frustrations of ?watchful waiting? here in the past.

I believe this is one of the most challenging aspects of living with multiple myeloma?sometimes all we can do…[Read more]

Hi Anne,

Is your husband on CDT (Cyclophosphamide – Dexamethasone – Thalidomide) or a similar cocktail? CDT seems to be the current frontline of attack. I did well on CDT but the much vaunted SCT was a failure after only 10 months.

I am back on Velcade now (with the dreaded Dex) and will complete my first cycle today (and then a week off…[Read more]