Regarding the holiday… although it is only 8 days back home in Wales with family it is quickly taking on a significance beyond its stature… with 2 brothers and 2 sisters and their spouses deciding to make it a really chilled out get together. Janet and I are really looking forward to the break and now that my leg is decreasing I am driving again… so we just need to avoid any mishaps or MM booby-traps.;-)
Oh yes… speaking of which… I have felt rough all day since returning from the car's MoT and I thought 'Please …no!' Insertion… deletion… temperature up to 37.9 or thereabouts all evening up until midnight and then down to 37.0 by 2am. Janet mightily relieved.8-) 🙂
Roll on next Friday… I'll be a nervous wreck by then.:-)
Dai.
Hi Eve,
I have a personal hand warming pillow on my wish list… and I must admit that it most definitely helps. 🙂 Re: the burning neck, Slim's not using the hot water bottle as a pillow by any chance? 😀
Sleep, or lack of it is the bane of my life… always has been but now, when I really need it, it continues to evade/avoid me. I grab an hour here and there but I go to the toilet several times a night and have fallen asleep reading on the throne on many occasions. I have also had to call for Janet after sitting for so long that my legs have gone to sleep… When PN meets P&N its no joke… well I suppose it is really but tying to drag my jellied legs out of the tight confines of our en-suite and onto the bed can be the sort of 'fun' that Janet could do without at times various – usually between 1:am and 6:am. Too much information?:-D
I'll see Slim's 3 parts and raise him to a jigsaw – one of those John Constable jobbies… but I know exactly what he means.
BTW… after establishing that you are a scouser I automatically assumed that you both hailed from and resided in, Liverpool. The other day you mentioned Deal, in Kent… my son is on the Isle Of Sheppey.
Dai.
Hi Gill & Stephen,
I have been following Stephen's progress forever… but with particular interest since he struggled to get to his 2nd SCT. Talking to others (mainly at our DayCase Unit) it seems that the 2nd SCT is often rougher (i.e. not as smooth) than the 1st and takes much longer to recover from. I hope this is the case with Stephen.
The lump doesn't sound encouraging… but to be fair Gill it is in a popular place for general lumps and bumps to appear. Seeing as most MM tumours are associated with bone there is a fair chance that Stephen's lump is 'something other' and not necessarily evil in nature. I went through a phase where I used to get run down and I often got 'swollen glands' that I swore were tumours but turned out to be no more than swellings (one of which had turned quite hard simply because I couldn't/didn't leave it alone). I really hope that this is of a similar ilk.
I cannot exercise at the moment… as a matter of fact I am in a poor physical condition but I can pin this state of affairs to being on Velcade… my swollen leg notwithstanding I just do not have either the strength or energy to walk very far at all… at best fifty yards or so before I need to sit down. I can't wait for Velcade to be finally over so I can recover and get something near to what I was like up until April – which wasn't brilliant then… but a hundredfold better than now.
All the best to you both.
Dai.
Thank you Eve,
You are quite right, Gaye was thoughtful enough to let us know personally that she was taking her path onwards with no further treatment for her MM. She painted her picture of the hospice at Westcliffe-On-Sea with its gardens and left us in no doubt that she was comfortable, cared for and ready for the next step.
I was hoping for a little longer… a few more conversations, garden gossip and reminiscences… but that was wishful thinking on my part. Gaye knew where she was, what stage she was at and was obviously ready for the final steps.
For the first, perhaps the only time, I wish I had been there. 🙁
Much love to a much loved lady.8-) 😀 🙂
Dai.
I'm trawling through the forum, being flippant, being as bright as I can be and my heart gave a little jump when I saw new posts in Gaye's thread. I was hoping for some garden gossip, perhaps even a word from the great lady herself. But she has gone.
Oh Gaye, I am so, so sorry.
Dai. xxx
It is Elizellen… I will make enquiries when I return to active duty on September 12th. 🙂
If those charges are universally applied then I will have some cash left for other things.
Let's see:
A fresh box of 'Celebrations' every clinic £ ?
A personal hand-warming pillow: £ ?
A spare vein tightener jobbie £ ?
A personal footstool for the waiting area £ ?
A really good mirror so I can put in my own cannulas £ ?
A new red folder for my records £ ?
(My old one is massive and is held together by chewing gum and knicker elastic)
Not too expensive… except for the sweets… but there could be a rota from within the regulars. 😎
Dai.
I have become acclimatised to my lack of mobility (bone damage and PN) and tend to think of exercise and general lifestyles as pre-mm and post-mm… the first a memory the second a reality and that is fine… I have no big issues or traumas over the matter… but I do miss the actual walking… the scenery that changed with every corner, the people I'd bump into, the freshness of ideas plucked from the open air.
Morris The Dog [i]TM[/i] died this early spring… I had to fight myself to stop feeling incredibly guilty about his lack of proper exercise and what I would call our 'Doodlebug' walks… but now he is gone and so has the guilt, which makes it easier for me to treat serious exercise as a memory. The hospital has an exercise group and I was tested and sent along… one session knocked me off my feet for 3 weeks, no kidding… I never went back… whatever measures they use none were appropriate for an MM'er with laodsabone damage.
Mind you, they produced a nice infosheet with cartoons of the exercises and that has proved useful. 😀
Dai.
I'm with Bridget and Min… good luck with your remission Carol and long may it stay fixed at 0pp.
There are quite a few 'regulars' to this forum who are living their lives in remission from MM and we rarely see hide nor hair of them… and to tell the truth I am glad that they are out there hopefully making the most of their lives for as long as they can.
When they do return they will need us… and after a while they will be guiding, comforting, advising, exchanging experiences and helping to sustain our small community. Its what we do. 😎 😀
Dai.
I used to be full of natural steroids… although I was a landlord of a real ale pub and good, fresh food restaurant, I hardly ever bothered with alcohol… I enjoyed the lift of a natural buzz that came from somewhere within… but these days my natural buzz has been swatted by years of daily meds.
But like you, when I heard about the £150: 00 charge for entry into my own records my flabber was truly gasted.
Now, it so happens that I haven't quite finished with my former consultant but I need access to my records for the period when I was in his 'care' – and yes, its going to cost me. Apparently I have to apply in writing to The Queen's medical Centre, in Nottingham (which I assume is the central records office for the area hospitals) and they will arrange for a view… and extra costs for any copies of records.
Funnily enough I didn't want to bust a gut when I found out… rather I was truly amazed and just as amused. I think the amusement factor will soon dry up when I get the list of charges.
Dai.
ps… thanks for the link/download… I'm off for a coffee while I read it. 🙂
Not here… Occasionally I manage to blag a print-out of my bloods but that's about it. Everything else disappears into the big (Red) medical records folder.
The other week I opened my records folder – I was waiting for a Velcade infusion and I had to fill in my record sheet of aches and pains etc… I could see where it was lodged and so I opened up the folder, pulled it out, rested it on the file and filled it in. The nurse working with me noticed what I had done and she asked me nicely but firmly never to do it again. Apparently it is a big no-no… and it costs [b]£150-00[/b] to get (written) permission to delve into your own records. :'-( >:-) >:-(
Dai.
Hi Eve,
I have emailed Craig and he has confirmed that he is happy for me to attend.
So… first spot after lunch:
[b]13.30 Multiple Myeloma ? A Patient Perspective[/b]
Which will be my perspective on how we can be helped on our path towards individualisation of treatments by laboratory and technical services – especially, or specifically, on how we can be proactive in the management of our treatments.
We will need guidance about the work of the labs – what they do, what they can offer and how we, as individuals patients, can influence the decision makers to best practice on our behalf.
Should be interesting. 😎 🙂
Dai.
Hi Ivan,
I had a mild form of peripheral neuropathy for 3/4 years before being diagnosed with Myeloma. In the main it was general numbness but I also suffered bouts of pain in my big toe and I was told by my GP that it was a form of gout.
The interesting thing is… when my PN kicks in at night (usually when I'm lying down in bed) I get shooting pains that go right down to my big toe… just like of old. I don't get it while walking… but then again I rarely get to walk very far at all since I started Velcade.
I hope your GP sorts it out for you… we have enough to be getting on with without these side-by-side side-effects.:-S
Dai.
Hi Eve,
I'm willing to go (if Craig hasn't either given up or found someone else) because I realised that my reason for not just saying 'Yes' in the first place was a negative act. I was saying 'maybe' just in case I am either ill or feeling the side-effects of my last cycle (the conference falls at the end of my final rest period) but that is a poor stance to take and I have got to believe that I will be fine by then.
It is so easy to fall into the role victim of the disease and its treatments and I have always told myself that I would not allow that to happen… so, I will attend, if I am still wanted, and if it is confirmed I will ask for guidance and start generating discussion and debate on this forum in order to get a holistic approach to the wants and needs of Myeloma patients and their partners and carers in the processes and procedures carried out by the labs and technicians.
Dai.
Hi Craig,
I have been giving it a lot of thought and, barring any last minute glitches or health hitches, I would like to attend your conference.
I will be canvassing opinion from this forum to ensure that my contribution is a reflection of a broad spectrum of experiences, needs and desires.
I will await any instructions etcetera, etcetera.
Dai Crowther.
Rant, chat, gossip and surmise away… you are not going to upset me with either conjecture or facts… not this side of my holiday you wont. 😎 😀 🙂
To tell you the truth Eve, my primary involvement in this whole kappa/lambda/ratio mystery is one of fascination. I'd like to get to the bottom of it as much as anyone… and anyway, I woke up this morning on the turn…. like milk… only the good way.
My taste buds are starting to recover and I feel a general lift in my energy levels etc… nothing big but typical of the latter stages of cycle recovery… about 3/4 days early… it must be the holiday spirit pushing forward.8-) Oh, and I am amazed but my left leg looks almost normal – about 10/15% bigger than my right (2 weeks ago it was elaphantine:-P ). I am not getting too excited… but I am cautiously optimistic of being reasonably well for the actual holiday away.
Silly really, I am only going home for 8 days and yet it feels like a world cruise… and I wouldn't swap one for the other at this time – no way.:-)
Dai.
