Hi Vicki & Colin.
Right… time to get real. It is hard to remain positive… bloody hard work… it is moral sapping to take on board the idea and then the reality of another dose of Cyclo, followed by the GCSF injections, the first day of harvest, the necessity of Plerixafor (if needed) and the stress of waiting for the results. But think of this… what is the alternative?
Do you enter the process with your head down, dragging yourself through each step with a heavy heart and the expectation of failure? Or do you look it straight in the eye and say I can do this… I can take whatever I have to face and dominate it… head up, shoulders straight and saying to yourself it is either one way or another and I demand… yes, I demand success! Look out into the universe and demand a successful procedure, don't back down, no half-hearted attempts… it's either Yea or Nay.. so why settle for anything else than Yea!
And if it is Nay? So be it… what's next, give me the options and let's go… Whatever It Takes!
The odds are even… but this time there is Plerixafor, waiting in the wings, ready to swing into action, to swing things in your favour.
Head up and go for it Colin, commit yourself fully into positive action, visualise those cells cleaving away from your bones and into your blood stream, enjoy every single ache, take joy in the poison that courses through your veins… its shit but its good shit because it means that everything is working as it should be.
Your call… make it count.8-)
Dai.
Hi Eve,
The reason I questioned Slim's use of a maintenance regime at this time is two-fold.
1. He is still finding his feet after the sct, so it is very early days yet. Your consultant will look at Slim's progress (taking into consideration his case history and the mammoth effort from Slim to get where he is) and he may decide that a maintenance drug is the way to go.
2. If we look 6 months down the road Slim should be somewhere near the levels of strength and general health that will carry him forward into his remission which I truly, deeply hope will be a good few years (a la Tom).:-D
If the medics, in consultation with Slim and yourself, decide maintenance is the way forward then all well and good but it has to be remembered and considered that every drug brings with it a range of side-effects that can sometimes be as debilitating as the disease itself… and of course if the disease is dormant and under control then the maintenance side-effects will be the only fly in the ointment as slim is trying to live as normal a life as possible.:-|
The American approach of less is more is something to consider. Less drugs, less often and smaller doses… it' seems to work for them.;-)
Either way and any I wish you both relief and release from hospitals, side-effects and freedom from MM for as long as you possibly can.8-)
Dai.
Hurrah… got one through.
Dai.:-)
I don't quite understand Eve.
From what I do understand, Slim has had his SCT and is now in the slow process of recovery. Did you or do you expect him to receive a maintenance procedure by way of Revlimid, Thalidomide or some such other? Did your consultant indicate that there would be a maintenance regime?
Has there been some sort of setback or indication of an area of weakness that would indicate the need for maintenance? Because otherwise, the process of slow recovery under slim's own head of steam would be perfectly normal and maintenance would only become an option if he had already been earmarked as part of a trial or signs indicated a need,
I assume from your posts that slim is on a trial but has not been randomised for maintenance… in which case self-recovery is the order of the day… and to my way of thinking not a bad thing at all.8-)
Dai.
Hi Mavis,
I have no qualms about calling myself an expert when it comes to the dreaded constipation. I have had some really bad times which included a lot of pain, stress and absolute exhaustion.
If you are prone to being constipated then take at least one Movicol – Laxido powders once a day. If you feel it is taking hold then take three a day, Morning – Noon – Night. If you feel it has taken hold and you feel impacted then don't hesitate to take six powders over a three hour period. You can also get tubes of mini-laxatives which help to get you moving from the bottom end.
Constipation is no joke… it can be one of the most painful and distressing times of your illness… caused, once again by the medicines designed to help our disease.
Dried apricots and other dried fruits are helpful but if you have trouble chewing then an investment in a smoothie machine is worth its weight in gold… you get all the goodness without having to masticate the fruit and veg to pulp form.
And as funny as it might sound drink and drink and drink… there is a connection and keeping yourself hydrated and peeing freely will help no end with your digestion.
Regards
Dai.
Hi Gill,
My thoughts have been bent towards the two of you for weeks and especially for the past few days. It was yours and Stephen's 'voices' that were the first to speak to me when I discovered Myeloma UK… brave voices, bright voices and you strengthened me more that you will ever know.
Now Stephen has slipped off the radar, peacefully, painlessly… and now my thoughts are with you and you alone.
Enough for now, except to say, much love as always.
Dai.
Hi Cathy,
Ivan seems to have drawn a very short straw with regards to 'things that can go wrong' during a SCT. Ali's advice to grab hold of the consultant is sound and practical. 😐
In your shoes I would want to know what the medics expect to happen, in what order… you need to know how the different side-effects and procedures are affecting Ivan's progress and what needs to be cleared up first. Like Eve I would like to know if Ivan has had kidney problems before? I know that the medics are reluctant to allow the procedure for people with a history of kidney disease… Jo, a regular on this board was denied the procedure on that score and someone else more recently too.
If this is a new disease then I imagine that getting the kidneys functioning as good as possible will be their first priority. The transfusions will help buck up Ivan's strength and resilience but the diarrhoea is part and parcel of the SCT I'm afraid… but it will pass.
I will be praying for Ivan to reach that magical 0.1 in his Neutrofils and the beginning of the road to recovery… usually they let your out after your Neutrofils reach 0.5 (other factors such as platelets levels etc., notwithstanding but they usually follow the Neutros pretty quickly).:-)
So even if it does mean an extra few days to sort out his kidneys before they allow him to go home he will be starting on the long road to recovery… slow but sure.8-)
All the very best.:-)
Dai.
My Dear Gill,
I can hear your heart breaking from here.
Stephen is in the right place but it sounds as if he still has some sort of mobility and you haven't said if the Magician & Co are going to continue with Stephen's preferred treatment. Will Stephen's ability to communicate be helped by that treatment? Have your wonderful medics officially abandoned active treatment for end of life procedures and have you made any plans for that route?
I am trying to look at the practical side of your situation but all I want to do is offer you unconditional love and support and galactic, universal prayers.
Whatever happens next I think you need to sit down with someone (MacMillan Nurse?) and make plans for seeing this through as gently and as painlessly as possible.
Gill, you are your reason for coping… please talk to Min and Tina, try and get some sort of perspective on what is to come… you, Min, Tina, Sarah, Ros and so many others deserve a chance to live and find a life that will bring you back to a better version of you. Better than now that is. You deserve a life without the burden of care and the helpless observation of your one true love in pain and distress.
I'm rambling now… I can do nothing practical to help but I hope you seek solace in your family and all the practical help in the world right now… it is there, please seek it out and let them share the burden of practicalities on your behalf.
Much love.
Dai.
Hi Jaqui,
my story is try much akin to Helens re: diet etcetera. There was a sugar shortage back in the late seventies and many people switched to sweeteners which caused a massive demand and supply from companies. Many of them were terrible, with very bitter aftertastes but one or two, Canderel I recall as being amongst the best, produced both tablet and sugar-like jars of granules, which proved very popular and very sugar-like… all in all a very good substitute if still a good way off the real thing.
We used the Canderel products for a year or so but eased of graduakk==lly because it was a very expensive product. By the time sugar was back full time we had reached the stage where we didn't use anything in our hot drinks and sparingly on foods. We have stayed that way eer since. Janet uses sugar in her baking and cooking but neither of us use sugar in drinks or on cereal ecetera. I had one spoon of sugar in a milky coffee a couple of weeks back and it tasted awful to my pallet … a lesson learned there.
IMHO I doubt that aspartame is responsible for MM… or any other individual food or drink product for that. I have been anaemic since birth which has included hospital stays during my childhood and many consults in my adulthood, culminating in the discovery of a rogue gene handed down from my mother's Romany relations who moved to the UK in 1900. My Grandmother died shortly after my Mother's birth due to blood loss and a low immune system that did not help her picking up pneumonia… who knows, she might have developed MM… but my consultant has told me quite categorically that my anaemia and my MM are two disparate and separate diseases and my MM is just the bad luck of the draw. She says that almost all MMers are the same, just the bad luck of the draw with no rhyme and no reason… just a gene that is in most of us that has, for whatever reason, been irritated into life… and once alive there is no going back.:-(
This is my conclusion also. But there can be a long, long time, improving rapidly where MM is changing its status from terminal to chronic… with a ten year expectancy for most new MMers… coming soon, to a place near you.8-)
Dai.
Great news David,
This puts you and your situation in a much better light than a week or so ago.
I know that you will cope with whatever it takes to beat this… so 'Vasbyte' and the best of British.:-)
Dai.
Hi Andy,
I hope you get some definite direction from your next visit to the Prof. You are young and fit so perhaps the Allo might be a good option for you… Either that or a decent remission/plateau from your frontline might see you in a much better light for an auto by the time MM starts bothering you.
In the meantime enjoy life and walks and beer…
I had some great times walking in the lakes moons ago… Excepting Sca Fell which is a drudge whichever way you approach it.
Many regards:-)
Dai.
I hate to voice the possibility but I have had my suspicions about a couple of posts from concerned 'friends' or 'relatives' regarding the onset of MM but then we never hear from them again… I don't know why but something about the posts made me suspicious or a tad uncomfortable… I truly hope I'm wrong but there are some sad people out there.
Dai.
HI vicki & Colin,
I was told that there can be a big jump from one day to the next, although 1 compared to 5 last time shows that Colin will need it. Did they send you home with a GCSF injection or double dose? If not, why not? Were they adamant that Plerixafor was definitely not an option at any stage? Mondays are normally hectic with big clinic etc., but I am surprised that you didn't get a visit from a consultant to discuss what happens next (i.e. from day to day). Did you see any doctor at all?
I would have thought a double dose of GCSF would have been the least they could have done for you. I too had a very slow first day and they sent me home with a double dose of GCSF… it didn't have a great effect so Tuesday night we had to come back in at 11pm for a Plerixafor injection. Wednesday was slightly better but the Prof didn't want to take any chances so after the Thursday reading we were called back in again for another Plerixafor injection and Friday produced enough (just enough) to give us a total of 2.1m,
If things look slow today I would request a visit from a consultant to discuss options before the week gets away from you… don't get upset or angry, get assertive, its your treatment… and you should have some say in the process and outcome.
I will be thinking of you today… best wishes
Dai.
Congratulations Wendy,
It is so good to see positive milestones show up on the board and especially by such a regular contributor with a positive attitude and such a helpful demeanour. 🙂
Let's look forward to September 1st, 2013 and your second anniversary… with a wonderful, infection free and healthy twelve months in-between. 😎
Well done and the very best of good fortune.:-)
Dai.
Thank you Theresa,
The a-b's are working at the moment but I am still feeling washed out. I have had to put off a visit from my little sister and nephew at the last moment (tomorrow – Monday) because she is taking a-b's for a viral infection caused by a tooth access… I just dare not risk it with my Neutrofils down to 1.6 from 2.5. 🙁
I have a couple of friends from Fishguard, currently in North Yorkshire in their camper van who want to drop in for a couple of hours tomorrow afternoon on the way home… they assure me they are healthy and germ free… so I have said yes. It's difficult but I have to judge each case carefully. If they turn up sneezing or coughing etc., I will instantly show them the door. I am not paranoid… I am way beyond that.8-) 😉
Dai.
