Hi All,

I hope it doesn't come across that I am decrying people's contributions, far from it. I understand just how easy it would be for me to withdraw quietly and fight my corner… with Janet and those I love beside and behind me.

The MUK discussion forum is just that… a forum… it doesn't say which direction the forum should take or…[Read more]

[i][b]' hello to everyone & jean who i have spoken to.

I'm stephen im 47 years old. We have 2 kids joe who is 24 & jade who is 17. I'm writing this now & I'm crying like a baby. My wife dawn had al amyloidosis myeloma.she was diagnosed in aug 2010.sadly she passed away on 29/01/12. She was trying to be so strong, she was so very brave……[Read more]

Hi Mavis,

As Tom says, you are definitely going through the wars… but if they can sort you out and get you going forward then all well and good. 😎

Keep us posted and chin up.:-)

Dai.

Hi Ian,

I first encountered PN with my frontline treatment CDT.. the 'T' being Thalidomide.. but it only really became a problem when I was on Velcade… where as well as galloping PN I also developed a DVT complete with legs like an elephant and badly swollen ankles. I am now on Revlimid (2nd Cycle) and I am wary but my consultant told me…[Read more]

Hi Helen & Jo.

Thank you for your support… I was wondering the same thing Helen, that I could have fractured it by over-stretching etc., although I can't remember any particular occasion where I might have done so.

I was sent by my haematologist consultant to see an orthopaedic consultant at the Queen's Medical Centre, Nottingham… not…[Read more]

Hi Bridget & Tom,

Thank you for your encouraging words… I have sort of convinced myself that it is 'normal' damage… or that if it is by way of mm disease, that the pain is due to the residual damage caused by the disease which has now been dealt with by R&D.:-)

Otherwise I feel okay… good appetite, PN bearable, look okay… ah,…[Read more]

Hi Eve,

Its either amazing, or an amazing coincidence… but 2 nights of one small dose Amitryptiline and 2 nights of at least 6 hours solid sleep… sans sweats and directly on the back of a Dexday tm…. I'm impressed and hoping for more of the same. I have woke early both days (6ish) and stayed awake but so much more refreshed than with the…[Read more]

[quote] I feel that we are dealing with our loss really well although we still have our crying days, as we call them. Mum fought myeloma every day and we are very proud of how she dealt with it.

We go to the crem and put flowers down(especially roses, mums favourite) and we have now started to remember the good times before mum was ill and…[Read more]

Hi Neelie,

Where is here? What's your Dad's name and where is he being treated?

Being nosey.:-D

Dai.

[quote]Am I pushing myself. [/quote]

In a nutshell, unless you are some sort of wonderwoman? Yes, bigtime.:-) 🙁 :-0

You may get away with it but if you body is suffering, including joint pain, then it is you causing the problems, not your body.:-P

Look at it this way Kay… during your SCT your body's capability to produce stem…[Read more]

Hi Neelie,

The positive is that your Dad is now in the right place with the right people to take care of him… and they should have been doing so for a long time before this. It makes their job a little harder (having to plot exactly where your Dad is with his mm and the appropriate treatment to bring it under control) and your Dad had to put…[Read more]

Hi Sarah,

Tell Henry to take it slowly, to take it one-day-at-a-time, to take it easy… but to take it.8-)

Before you both know he will be up to speed… just in time for the Olympics.:-D

Dai.

BTW – his 2 bags now, 2 later deal keeps my genuine 'World Record' nice and safe. (14 Bags for 2.1 million cells). 🙂

Hi Fiona,

Thank you for picking up on the thread… I have copied your reply to Becky and I will be speaking (Skyping) with her tomorrow. Its her baby and I believe it will do her good to take the lead on this… I'll advise and sort out the entertainments and press releases etc.8-)

I will pass on all the relevant contact details…[Read more]

Hi Eve,

Like Slim I would love to cut back on the Morphine but I struggle with keeping the pain at bay as it is… so I'm legal too… but I'm convinced that the morphine is responsible for as much harm as it does good… especially after nearly 4 years of constant intake.>:-(

I have checked the Amitryptiline and its sell-by date is 02/13…[Read more]

Hi Eve,

My GP gave me some Amytriptiline for my PN last year but I didn't fancy taking an anti-depressant (albeit a very small dose) I still have the packet, unopened… I'll check the sell-by date and if they are still 'live; I'll try them.

You can't beat a personal recommendation.:-D

Dai.

[b][quote]I'm a fine one to talk… sleep, or rather the lack of it, is the bane of my life… Cousin Dex doesn't help but I know that a good night's sleep… a good seven hours or more without waking, is as good for me as any medicine or therapy on offer. [/quote][/b]

An here we are, a week later, feeling sick with lack of sleep and 'Dexday…[Read more]

Hi Andy, I love your smileys.:-D

To my shame I didn't know Nottingham held a beer festival.:-0 When/where is it held? We live in a village in the Vale of Belvoir… a few miles north of Bingham and equidistant (12 miles) from West Bridgford and Grantham. We skirt around the city to get to City Hospital and only pop in to the main shopping…[Read more]

Back to the drawing board.:-D

Dai.