[DaiCroParticipant]

… Feel The Width. Or in this case the length… At first I looked at the idea of my missing out on 'Quality Of Life' during my latest treatment (Velcade MkII) with a slightly jaundiced view… but now I smile a little and think of my mantra… with me since the very beginning: 😎

[quote] [b] 'Whatever It Takes' [/b] [/quote]

'Whatever It Takes'… in this case the abandonment of all and any 'Quality Of Life' markers. Anyone who has taken 'Velcade' knows that before each infusion you fill out a form showing increases in PN and related Neurotoxic measures. I am on the 'whatever it takes to keep him alive' regime, so all such niceties that might be taken into consideration to give me some sort of balance with quality of life are ignored… not by the nurses… who carry out the recording of my PN and Neurotoxic measurements meticulously and who have reported the major swings to the Head of Day-Case, my Lead Nurses AND my Consultant… but the answer (to the question 'Shall we alter the dosage in order to alleviate the suffering?') is now… 'Continue with the maximum dose'. 😛

This is because giving the maximum dose is the best way of allowing my 'once a week' regime to continue… altering the dose may well help alleviate some of the growing side-effects but it might also allow my Light Chains some leeway in the upward department… and we don't want that… now do we. 😉

So in the past few weeks I have had to say goodbye to my guitar (and other stringed instruments) playing… most likely for good. 🙁 I have had to put up with increased discomfort and pain in my feet, legs and hands… all in the pursuit of stretching out my time on Velcade and therefore on this earth. 😎

Whatever It Takes'? Oh yes! 😀

Dai.

[VickiParticipant]

Oh Dai that's tough,

I get the impression you are very musical. It's a bugger to have mm but to give up the music as well.thats rough.

Lets hope that there are more treatments in the offing that can help you before these side effects get too far 🙂

At least it's sunny!

Have I missed the posts from mothas…..is he ok after sct?

Vicki and Colin x

[tomParticipant]

Hi My Friend
Well its a bugger this PN 🙁 I have a little bit on my feet but none to worry about.
I heard you sing Dai so am sure you could now revert to the Vocals only and still enjoy the music 😀
Stick with it Dai, and I hope they soon find something to cure the PN

Tom Onwards and Upwards

[dickbParticipant]

Ok, so the guitar playing has to go and other forms of music playing but you are still here, the sun is shining and you have your family. Tell me, would playing a drum or symbols or bell ringing be an option, it's playing an instrument and creating music. Or, you could just tell me to wind my neck in.

[DaiCroParticipant]

Hi Vicki & Tom,

I have had the PN in my feet since the frontline CDT… I was told that it often faded after the SCT stage but not, alas, for me. It started to affect my hands over the past 3 years but nothing too drastic and I could live with what I had. It is only in the last 8 weeks that the PN in my hands (and feet) has accelerated to the point where the numbness and flexibility has seriously affected my guitar (bouzouki, mandola, mandolin etc.,) playing to the point where the necessary clarity or quality has disappeared. :-/

Hi Dick,

You are quite right about the sunshine and my continued presence on this earth and I wouldn't swap the company of my wife and family for any amount of musical skills… which is what I was trying to say in my opening post. Asking you to 'wind your neck in' would be an insult… I started a thread and that very act grants anyone on this board to express their opinion or offer their advice in response, so please feel free to do so.8-)

I was never a great player… but I was competent enough for my own needs, a few groups and for a really good Ceilidh Band… I could 'Diddley Dee' with the best of them. Funnily enough I have never mourned not being able to play golf anymore and I had already grown too old for my other sporting pursuits (apart from Hill Walking). 🙂

I already miss just swinging a guitar up and finger-picking or gently strumming while leaning a ear down to the instrument and panning for the hint of a melody… songwriting was/is my greatest individual pleasure… creating something from nothing as a reflection of my creative freedom. That is why I shall miss the ability to play… far, far more than just entertaining myself and others.:-)

Regards to all.

Dai.

[mhnevillParticipant]

Hi Dai

Glad you are persevering with the Velcade as you say, it seems to be working and you are still here to tell the tale. I just wish there was a substitute that could give you some satisfaction musically. what about forming a Barber Shop quartet where they sing unaccompanied! I know we all have to adapt, how is having to take a service from a perching stool (!) but we can cling to the things that make life special.

Do you get a week off each cycle? I was wondering if you will be able to get away again.

Love to you and Janet.

Mavis xx

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