I am so sorry for your loss Jean… I too am close to my brother (14 months) and I know that he worries about me constantly. I hope that you and the rest of your brother's family find solace and comfort in each other at this time.
Regards
Dai.
AOK, normal, ditto, with knobs on… try not to sleep during the day… keep yourself awake with distracting things that don't encourage snoozing.:-)
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.8-)
I have had four out of five really bad nights… feeling absolutely drained and depressed and almost in despair… then last night I had a straight eight hours, almost unheard of… and today the sun is shining in my soul (and its not bad in the real outside world either).:-D
Sleep is a great restorative Tina but nearly every piece of associated advice says to try and avoid sleeping during the day.
Regards:-)
Dai.
Hi Gill,
My fingers are crossed for a false alarm, or at least something which may be unpleasant, needing whatever they can throw at it but not directly mm related and certainly not indicative of Rev failure. 😐
Stephen no longer has the strength and vitality of before but even so I could not manage to go to France doing little day by day chores etcetera, never mind the stresses and strains of travel… yet you have both done that recently. Why can't this 'swelling' and associated aches and pains be related to those exertions? I hope it is… and I hope I have the chance to say 'more fool you'.
I really, really do.:-(
Much love and everything crossed.:-)
Dai.
Thanks for that Bridget… as I have heard somewhere – 'Every Little Helps'.
The thing is, there are plenty of benefits, grants and bursaries available for long-term and terminal illness patients and their dependants but no central unit or help-point where you can go and find out what exactly is available and what is due to you. I find that both scurrilous and pathetic. We have enough to be going on with without worrying ourselves sick about how we are going to get through the winter bills.:'-(
Anyway… don't get me started.:-D And thank you once again,:-)
Dai.
Hi Elizabeth and Bridget,
An American friend posted this and I watched with interest… mainly because she was so enthusiastic about Dr Wahis and the remarkable recovery she has made with this eating regime. I told Janet about it and she watched it with me… and then made me watch it for a third time.
We have done what we often do with such wonderful universal ideas… we have adopted it and adapted it to suit us and our way of life. What it does mean is that our eating habits have changed dramatically… with the end result being far more green vegetables, far more colours and lots more berries and fruit. More fish, grass fed meat and the obligatory seaweed, all very tasty, nutritious and best of all cancer fighters. The bulk aspect would have put us off but we never have big portions anyway these days, due to Janet's diet controlled, (healthy and little and often) diabetes plan… so smoothies instead of platefuls is an easy option. 🙂
We reckon we will be following the Doctor's plan to the extent of approximately 60/70%… with the rest as per our tastes and desires… but that will still increase the goodness, nutrients and essentials by about 200% of our usual weekly intake.
It is so easy to plan and prepare, very easy to eat and if the benefits to us are only a small proportion of those realised by Dr Wahis then we will be very happy.8-)
What have we got to lose?:-D
Dai.
Thank you all for your supportive comments.
I am now on my rest week from the Revlimid… just me and my mate Dex (+ the usual suspects). My shoulder continues to improve but is still weal and doesn't take much to make it ache… but generally the pain has gone and it does seem to be getting stronger. Its my challenge to the Rev… fix the shoulder and then go on monthly dampening duty for as long as you can. As for the Dex, I know it does me good and if the current side-effects are as bad as they are going to get then I believe we could become good friends.:-D
Consult next Monday… and all being as well as it can be then onto Cycle 2… hopefully with no adjustments to prescriptions etc.,… just more of the same and carry on.8-)
Dai.
My condolences to Jenny and a prayer for Mike.
I attended my first Nottingham Support Group meeting on Monday afternoon… approximately 22 in attendance – 50/50 mmer's and carers – and some of them were quite advanced. Only one of them has registered on this site (as a silent)… so we will never get to know just how many pass quietly over… but I am content to share my experiences and my friendship with those who want it… these others might attend support groups but seem to find MUK and the forum in particular as a frightening, too close for comfort, place.:-(
A shame but there you go.:-/
Dai.
Hi Eve,
Yes, I am going to put it to music… just four more lyrics to finish the FAWM project and then into the studio (well, my dining room actually). I have melodies for most of them and this one is already catered for so I'll do it first as a request from you.:-D
As for the rebel songs (and Eric Bogle) I have sung them all at one time or another and one in particular, 'The Town I Loved So Well' was a regular request at a folk club I ran in my first pub in Wales from the squaddies from nearby Brawdy Barracks.:-)
Dai.8-)
Just a quick Hi to all the youngsters – I hope you are all doing reasonably well and finding life bearable with joy in the morning and a quick smile as you fall asleep. 😎
Regards to all.:-)
Dai.
Hi Viv,
Recalling my CDT experience I was very similar to your Dad. All I can advise is to tell your Dad not to despair… its early days and the CDT is very actively fighting and killing off the cancer cells… but its also killing more than a good few ordinary but vital life cells… so its no surprise he is feeling absolutely drained of energy. Go with the flow, if the consultant is pleased with his progress, to the point of daring to increase the 'T', then it means that the treatment is working and following my similar experience he will soon start feeling much better. There are bound to be side-effects as long as he is on the treatment but as the cancer cells decrease his energy levels will increase and hopefully he will get by with 4 Cycles (rather than the full 6).:-)
I have Bence-Jones myeloma – I do not demonstrate paraproteins, I am measured by kappa light chains (paraproteins are heavy chains) but its the same difference in the end. I had a mantra 'Whatever It Takes', our friends David and Tom had/have 'Vasbyte – 'Bite Hard' and 'Onwards and Upwards' respectively. It helps to have a mantra… a reminder to dig in until life and health improves… and improve, I am sure, it will. 😎
Regards to you and your Dad.:-)
Dai.
ps. where are you from and where is your Dad being treated? (No obligation to reply).
Hi Eva
I am putting so much down to 'Chemo Brain' these days… Tom tries to convince me its just old age but I like to have an excuse. Thanks for the info… its been noted and stored away safely for as or when needed.:-)
Regards
Dai.
Hi Tom…
I had a 3:15 moment… and stayed awake for an hour or so, just catching up… but the good news is I had 4 hours before and 5 after… not bad for the night following a 'DEXDAY TM' and without any form of sleeping draughts (I don't bother because I know it won't do any good)… so I left it to nature and nature obliged.8-)
With so much bad news and grief hovering around the site this late winter I am so glad that we have some positive movement from one of our nearest and dearest… two people who must have have feared the worst on several occasions last year… and yet here they are, on the brink of the next crucial stage, with what must seem like a fresh start. At least that's the way I see it… and it is doing me the power of good.:-D
And I wrote another song this morning.;-) 😎
Dai.
Hi Eve,
That's a very interesting point, conformity.
Once mm enters our lives everything changes, forever. After we have come to some sort of terms with the illness and its treatments etc., we try to fashion some sort of new reality, some sort of new 'normality'.
We have to conform to this new normality and then what? In with new and out with the old… the old has gone forever and, for me, how we fashion our new life will make a massive difference to how well we cope and… and I know this will sound controversial… (but I am becoming more and more convinced as I meet long term survivors) just how long we survive.:-|
Its not just a matter of being positive, although that always helps in getting through treatment, its also a matter of giving your life, giving yourself, some purpose.8-)
I am working on the purpose bit… I won't pretend its easy because I need to see that I have at least the chance of the time to see my purpose come to fruition (or at least the prioritised parts of it)… and now I am beginning to set some hope for that with Rev & Dex,. Although its still early days I cannot wait for permission from my consultant or from the disease… there are no guarantees, mm is too capricious for that… no, I only need permission from myself… and that's the hard part.:-|
I know that I have had (have) my share of depression… but I have to be kind to myself and accept that… and by accepting it, and in a strange way embracing it… I can give myself permission to keep on living and enjoy life as much as I can by doing the things that lift me… and for me (and Janet even more so) completing my writing projects is the ultimate lift.8-)
Regards to Slim, I hope he has got his eyes on the prize, the harvest and SCT are just part of the training and preparation.8-)
Much love:-)
Dai.
Hi Eve,
When I think of some of the hoops you two have had to jump through and the barriers, administrative, medical and staff related, that you had to take on, address and beat down… all of which should never have been put in place or, on a couple of occasions deliberately erected… well, suffice to say I am delighted that at such a juncture in Slim's treatment you have finally, finally found a hospital that will afford you everything he needs to progress.
I could spit feathers at the imbalance and injustice afforded MM patients outside the major centres. I am fortunate, (although to be fair I made my own luck at a great cost) to have found the City Hospital, Nottingham, where the treatments, staff knowledge, nurse competencies and general courtesies have been second to none.
[i][b]We all, every one of us, deserve to have the s[/i]ame[/b].>:-(
But hold on… another time, another place.:-)
I am so happy for you Eve… yes, Slim has still got to go through the procedures and all that follows but knowing where the procedures are going to take place and the support that goes with them, fills me with confidence on your behalf… love it, embrace it and from now on in, and may that be a long, long time, you should, you can, you must, demand nothing less.8-)
Much love and regards to you both.:-)
Dai.
Hi Paul,
When I had Dex as part of my frontline CDT I was wired – during the Velcade adventure I felt foggy… early indications (Week 4 Cycle 1) of Rev & Dex seem to be pointing to wired – I'm writing an album's worth of songs for February/March (9 of 14 completed) as well as getting on with my 2nd novel. My problem is trying to get some discipline into the mix.
I attended my first Nottingham Support Group yesterday and met someone who is on Cycle 20 of Rev & Dex… he is off on a 6 week sailing adventure next month!!! I wish!:-) :-0 😎
Dai.
