Hi Gill,
Please wish Stephen an uncomplicated op with a quick recovery from me.
We have been given a general 'drop in' day for our 'Flu' jabs and I will certainly be there for mine. Janet had 4 'colds' of varying degrees last year and apart from one slight snuffle they seemed to pass me by… which I put down to my jab. People with colds and sniffles is the one guarantee of avoidance from me… if I am going to have a relatively short remission I do not want it compromised by infections from relatively harmless sources.
How are the lessons going? And, more importantly, when are you and Stephen planning to go to Francovilleshire and practice?:-)
Best wishes,
Dai.
Hi Paul,
Basically there are 2 types of Myeloma… Heavy Chain (normally associated with Paraproteins as a measurement of the disease) and Light Chain Myeloma (also known as 'Bence Jones' Myeloma and generally associated with Kappa Light Chains for measurement of the disease). Heavy Chain is the more common of the two but apart from measurement purposes and kidney problems being more prevalent in the Light Chain disease, everything else is shared.. including the treatments, side-effects and general outcomes.
Like you I have 'Bence Jones', Kappa Light Chain Myeloma… I have extensive bone damage but fortunately no kidney problems. I am not familiar with your RCD pathway trial, having followed the then traditional CDT (Cyclophosphamide, Dextramethasone, Thalidomide) frontline treatment. These trials, mixing up frontline and novel agents, is a relatively new movement and I am as interested as anyone else to see what initial effect they have.
Have they formulated a plan for you yet? i.e. RCD – Stem Cell Harvest/Stem Cell Transplant? How many Cycles of RCD? (Assuming Revelimid, Cyclophosphamide, Dextramethasone). 4/6 Cycles used to be the norm.
Good luck with the trial… if we can help with anything, specific or general, we will certainly try. 🙂
Dai.
[b]I Love[/b]
Silly things, little things, trivial things
Non-sensical tid-bits that show how I feel
In my sunshine and shadows
Through my smiles and side-glances
In those little romances I know to be real
[b]Dai.[/b]
Hi Bridget,
I do hope you are feeling much better today and that the pain disappears much sooner than the predicted 2 weeks – you deserve a break. 🙂
Had my 2nd infusion of V6 yesterday and feel flattened today… so you never can tell but I'm hopeful that I'll bounce back, as I am sure you will.
What have they told you about Bendamustine? How is it converted, tablet or juice? It's a new one to me although I have heard it mentioned in despatches. Will they wait until all your RT is finished or will it have an immediate start?
Chin upwards and best foot forwards.8-)
Dai. xxxx
Hi Sarah,
Did your father wake or did his snoring soften to a sigh before he slipped away? From what I have read in your posts I think that if it had been my father I would have preferred the latter… as a matter of fact that is exactly just how my father went, after five years of holding Lung Cancer at bay.
He had a bed made up in the downstairs living room and a couple of nights before passing he gave a gentle and slow running commentary of a collection up of horses and jockeys that were lining up along the branches of a large elm tree in a field opposite the house, describing the build and nature of the horses and the colours of the jockey's silks. He was very lucid and then suddenly said, 'This is bl**dy stupid' and tried to climb out of bed. My sister calmed him and gave him a sleeping tablet. As he settled back down he smiled at her and managed to say that he had the body of a seven year old and a mind to match… only the mind was healthy and strong and fit for another thirty years or more. My sister says that he shook his head and settled down and went to sleep. He snored for twenty-four hours or so and then slipped away.
After twelve hours or so of very deep sleep my sister phoned every one… and people frantically drove up to the house… my youngest brother arrived ten minutes late and was devastated… I was the only other one not to make it in time as I had taken the children camping to Devon for five days and only found out when my eldest daughter rang up her grand-mother on a whim… we had only arrived and put up our camper-trailer that morning… so we finished our holiday before coming home.
I was numbed… we had been expecting his end for many months… no more treatments, just a journey to the end and it had taken a long, long time. Words and phrases around the theme of 'it's a blessing' were the general order of the day. I wasn't there to share them… but it was exactly how I felt… that at the end it was a blessing… but to this day I am still not sure exactly who for.
Much love and regards Sarah, I am so glad that you are surrounded by your loved ones and their love at this time.:-)
Dai.
Sledging is a good word – one of its meanings is to barrack your opponents (mainly used in cricket – but Min has adapted it for the phone at the moment).:-D
Dai.
Sledging = ING
INGLENOOK
Leaving OOK!
Dai.
I love being loved, its the best feeling in the world.
I love those that love me and I hope that that is not just a coincidence.
I love the British seasons and the nature of those seasons.
I love the silly, trivial things in life that move me to tears.
I am moved to tears nearly every day and I love it… although it upsets Janet if she is not there to witness the event for herself… otherwise thinking there must be a darker reason… and I love her for that.
I love my children, all three of them equally… although I suspect that only one of them believes that and that the other two suspect her as being the most loved… which is not true, although we are the most alike and perhaps they see that and draw the wrong conclusions. I am going to love showing them all the truth.
I love myself, despite all my failings, I truly do and it has taken far, far too long for me to realise that as a fact.
I love Janet to distraction and I love the fact that she knows this to be true. I love the fact that every single time she enters the room I am in I feel my heart skip… even when she only been out to put on the kettle. I hear her footstep and my eyes are drawn to the door, I can't help it and when she enters I look to her eyes. If we are in the sitting room my eyes follow her to her sofa (one each, parked opposite) and invariably she grins as she settles… and then checks to see if I am still looking… always.
I love life, I always have… and now I love living… as a latecomer to the experience to my dying (no pun intended) shame.
Lastly, for now at least… I love my cyber friends… far more than most of my so called true friends and far more than a large number of my family who have not managed to find the courage or the effort to stay in touch, despite my assurances that cancer is not a catchable disease… despite my assurances of the value that their keeping in touch would mean to me. I thought that I would hate saying that… but actually I love myself for saying that… and the sense of freedom and peace that it brings to me.
Dai.
Thank you one and all.
I felt rather shocked to tell the truth Tom… Janet was delighted and I tried to respond but shock was the major initial feeling. To be perfectly honest I also felt slightly guilty after recent events… but I know that they are not of my making and my results will not change them, however much I would like them to.:-(
Hi Lorrainey, I started 6 yesterday and I felt flattened for most of today but feel slightly better tonight, so that augurs well. 🙂
Hi Min, you are right on all accounts – I am looking forward to a slice of normality, the book beckons and Janet deserves a treat or two (a thousand and one would be too much to take… knowing my woman a little but often will do the trick). 😎 You have no idea how bucked up I am to see you, Sarah, Tina and Roz posting so often. xxxx
Hi David, now ain't that the truth… I just wish that they could find a cure-all for everyone… or at least the same sort of positive results for any given treatment. 😐
Thanks again my dear friends.:-)
Dai.
I have just read this thread and I can't contribute for crying… I'm scared Janet will catch me and not believe the reason…
I'll be back.
Dai.
[b]'Glad you have found something that works and more importantly it doesnt make you stupid and want to sleep.'[/b]
I know what you mean Min… but this is Dex we are talking about here… If I could swap the effects of Dex to 'Stupid and Sleepy' I'd do it in an instant! 🙂
[b]'With all the energy its going to give you you can come and give me a hand to paint the walls…'[/b]
Talking of which… when you start a strip, consider using a small brush to write down thoughts and memories and feelings… whatever comes to mind… and then let them go by way of the big brush… it may prove therapeutic or cathartic… or then again just splash it all over. 😀
Just a thought and a theme on a scheme. 🙂
Dai.
Best wishes for you treatment Bridget – I hope it effect is both immediate and permanent. 😎 🙂
Dai.
Hi Debs,
I retract my earlier claim about having exactly the same problems as you. I certainly have bad PN… which has definitely got worse since I started Velcade, especially in my hands. My hands caused me the most distress as I am a guitarist and playing the guitar for pleasure and for songwriting… with its commercial aspects but… since my dose was lowered – Cycle 3 and then again – Cycle's 4, 5 & 6 (same for all 3) it has eased slightly in my hands… but no discernible change in my feet. 🙁
Given all that I do have pain, worse at night but not to the degree of pain as you describe. I am currently on 600mg of Gabapentin but I have been told by my consultant that I can up it back to 900mg if I wish… I think I wish and will start tomorrow.
I asked a Doctor at the Day-Clinic about the TENs Machine and he said they do work and I could purchase one if I so wished… I so wished and it arrived and I tried it… and ended up with a very sore calf. I decided to read through the instructions and reached for the box… and read on the side of the box that people with DVT's should not use the TENS M?C! I was being treated by the Doctor for a possible (since confirmed) DVT!???! A pity he had not actually seen one in its box.:-P
Here is something left field that I thought of while writing the above. When I get up to go to the toilet I put on my slippers… and straight away the pain in my feet eases considerably… only to return when I climb back into bed (sans slippers). It is obviously down to pressure on my feet but I have noticed that it is not as good when I have not used my slippers (either because I can't find them or I have been in a rush). So I conclude that it is the immediate pressure that counts the most. So I am going to look for something akin to bed-slippers/shoes, if there is such a thing and I will try them out. If they work I'll let you know.8-)
I'm sorry for your delayed appointment – they are bad enough at any time but especially so when you really need them.
With best wishes
Dai.
Llanfairpwllgwyngyllgogerychwrndrobllllantisiliogogogoch. 🙂
Leaving Och for the next competitor. 😎
Dai.
My Dear Min,
My thoughts will be with you and yours this day… I hope you all find strength enough to help you through the formal farewells… and afterwards I hope that you all find access to Peter in your own special ways.
With much love,
Dai.
