Hi Eve,
While I would still like to go abroad I must admit that the idea of a motor-home, and the freedom to go where the mood or weather takes me, is exactly what I need right now. Every time we go to the hospital we have to pass a large caravan and motor-home retailer. We haven't stopped for a look yet (and I can't afford it anyway) but the idea of motor-homing around the UK is very attractive. Apart from trips abroad we usually took a cottage when we needed a week away from the pub… The Lake District, Derbyshire, Devon, Cornwall, North Wales and the Cotswolds have all been host to us as we then explore the area. A motor-home base seems a much better way to do that.
🙂
Dai.
Hi Mavis,
Great news that you have managed to get home.. now just stay there.8-) 😀
Dai.
Hi Mavis,
It turns out that I do have two fractures.. one in the top of my arm and one in my shoulder blade. I have been given a sling to force rest but I have been told to use it normally for the rest of the time, including driving. I have to avoid stretching up and out but apart from that I believe its just a matter of time and natural healing. The fractures were caused by weakening due to myeloma but as i have said elsewhere, I reported the problem when it was just a pain in the arm 9 weeks ago… the fracture in my shoulder blade has occurred more recently. :-0
My consultant will be back from holiday for our meeting a week on Monday and I will want to talk to her. This is the second time I have had my concerns dismissed… last summer, whilst on Velcade, I made a complaint about my legs.. several times… I was ignored and ended up with a DVT (I was told DVT's aren't common with Velcade). From that I have ended up on Clexane on a permanent basis. As for Zometa… I have been told I have comprehensive bone damage but Zometa has never been mentioned… perhaps with these latest fractures they might consider it but I don't want to be on anything that isn't necessary.:-|
Hope you are feeling better than the last time you reported in.:-)
Dai.
Hi Jet,
I think you may be right concerning this treatment, I can't see it being licensed for at least three years, what with trials results to be collected and collated and approved, plus the licensing process which will mean America then Europe… it is more likely to stretch to five. Unless of course they hand their findings and research over to an American company… but even then that would only bring it down to about three years… but it does look promising. There may be good news for some UK MM'ers if they take the trial worldwide… as with Carfilzomib, which I narrowly missed out on.
Carfilzomib will be with us in about two years… so that is our next 'big thing' from what I can see.
I see that Keith's reply has landed in the middle of this thread… he asks if your allo is by way of someone you are connected with or a stranger? Either way I wish you well with the procedure and I hope it brings you enough remission to stretch to Carfilzomib and hopefully the ImMucin.
Regards
Dai.
I can't begin to imagine what it must be like to lose a true love. I have been so fixed on the idea that I will be going first that all my emotional energy has been directed on my going and those I leave behind… but Janet has often said that she could go quite suddenly, through illness or accident… we have had five friends go in just those ways since I was first diagnosed with cancer, so we know that she could be right.:-(
Janet was diagnosed with type 2 diabetes about 2 years ago… she takes medication but mainly she regulates it through her diet. Janet has never looked better… she has rude health for her age and we have saved a fortune through her ability to fit into good quality clothing saved from a while ago.8-)
Even now I am deflecting… away from the possibility of losing her, away from the idea of having to cope without her… and not because I need her care but because I need her love… desperately.:-|
So my heart goes out to all those who have loved and lost… knowing that the love part goes on and the lost part makes that love so much harder to bear with no return. I can only hope and pray that you find a way to cope and keep going forward in those baby steps until you find a balance between loss and life and living as 'normal' an existence as possible.:-/
Love and regards to each and every one of you.:-)
Dai.
Hi David,
There's a large part of me that wants to say yes, hopefully.;-)
Not that I'm wishing you ills but if you can cope with the usual, expected winter and summer coughs, colds and chills then it shows that your immune system is working as normally as it is possible to be normal with MM. If these ailments were making your neutrofils drop dramatically then you might have some reason for concern… but if they stay up and your body copes… then all well and good.:-)
Vasbyte and go with the day nurse.:-D
Dai.
Hi jean.
I've made a full report under treatments – but I have two fractures… finally getting my request for an x-ray. But they are dealing with it now including referrals and a flexible sling.
Janet likes Angels too but she only likes to display those items which are useful or beautiful…After (William Morris).
Dai.
Hi jean,
They are real poppets and at that age I am sure that they would be really happy that they had the same dress. 😀 😎
I have got to say that I love your art-deco lady in the fire place… Janet adores art-deco and I love statuettes.:-D
Dai.
Hi Jill,
I am so glad that your Mum is receiving her Velcade by subcut.:-D
The procedure is so simple with no battling for entry for a cannula which can be both painful and stressful… also the side-efects are lessened by up to 50% or so I am told.:-) 😎
I wish her well and you peace of mind.:-)
Dai.
Hi Tom,
No bads about it… I thought the same at first… I am angry that no one was listening to me at the beginning… if a simple x-ray had been offered when I first flagged my problem the second fracture would not have occurred… because the strain of one begot the other (so I was informed today).
🙁
Still, now I know I am happy. Much happier actually because the physiotherapist who fitted my sling said that neither fracture is very big but the sling will force me to rest my arm properly. It is a foam sling, very pliable, very comfortable and it loops around my neck with two 'D' rings and velcro covered straps. It is both elegant and comfortable… and the good news is it is a 50/50 affair – 50% of the time I should do normal things, including driving and any activity that doesn't include stretching out and up… the driving in particular pleases me very much. I drove in today, Janet drove back… we were home for 12.30 and I have only now taken it off for computer time.8-)
Feeling good today… no sign whatsoever of the sweats etcetera of yesterday. I feel it was the Rev & Dex working overtime against the active MM… and by the way I am feeling today I would say hooray.:-D
And yesterday was a DexDay tm. Do you want to know a secret? I look forward to DexDays tm. because I know they do me the power of god and any temporary discomfort they might bring is well worth the price.:-)
Regards
While moving inexorably onwards and upwards8-)
Dai.
I have been called in this morning for a collar and cuff fitting.. the doctors are concerned that the fracture might move… it did! Nine weeks ago it was just my arm.
I do know that my arm and shoulder are getting much better… but I'll go along with them… as I push for a shot of radiotherapy.
Dai.
I have received a form about my ESA… I have got to prove that I'm not fit for work or they will stop my benefits… Hey Ho and here we go.;-)
[b][i]'I have a terminal illness, I'm now in the later stages and I understand from my consultant (all referrals and contacts attached) that I will never be fit again to go out to wor[/b]k.'[/i]
Should suffice… but it won't.:-(
Hey Ho.:-)
Dai.
Thanks Helen… but as I said, my shoulder felt better today than it has for weeks, despite all my physical exertions, driving both ways etc.. stupid, I know. but it still feels good now.
Dai.
Hi Teresa and all,
Ah so… Janet took a few spare shirts and I was forced into quick changes when I got to the Haematology Centre and again after bloods. The phlebotomist was concerned because I was literally dripping with sweat throughout and a nurse stopped me on my way out and asked if I was okay… to which I said, 'Dex'… she looked dubious but nodded and passed by. I have never known anything like it… I was too embarrassed to wait in the main waiting area, so we slipped around to the clinic area which was empty.
My lead nurse had rung at 9.15am and asked me if I could change my appointment to 10.30am from 3pm… it takes us 45 minutes to get there, so we settled on 11.30am. I was convinced it was because my 'Freelight' test was back… and bad and that I would be seen by my consultant. I felt bad, sweating profusely for three days and in a bit of a funk. I didn't recognise myself… but as Janet said in the car, I had been in almost constant pain for nine weeks, My sleeping patterns were all over the place in a negative way, I had had a horrendous week-end but I was going to the right place… that I should be gentle on myself and concentrate on the positives… which, given the state of me, made me smile and the moment of funk passed. I am not good at not knowing… but when I do know, however unpleasant the message, I accept, move on and make the best of it.8-)
Sarah, my lead nurse grabbed a room and ushered us in. She and Janet exchanged a few pleasantries… she had made the change because she had nineteen appointments booked in one hour this afternoon and had to do some firefighting… my consultant was in Africa, on a child-safari with her husband and adopted son, she had been as excited as a child about the holiday for months… Janet gave me a nudge… yeah, yeah, so much for my conspiracy theory 😉 while they chatted I scanned my bloods results (I can read as good upside down as front ways up) and I was flabbergasted. At the last bloods my HGB had dropped to 9.8 and the reading was 11.2… I checked the name at the top and read through the rest… they were all as good, if not better, than the last results… feeling the way I did I found it hard to believe.:-0
Sarah was very pleased with the results… my kappa lightchains had risen by forty points but she said she was not concerned… that this was often the way during the first few cycles (I am halfway through Cycle two). She went on to say that the general bloods and my HGB in particular, indicated well… and that if the rise was due to the disease winning it would have been reflected in my bloods and they were fine… for this stage more than fine so she had no worries whatsoever and neither should I… and I haven't. Great news.8-) 🙂 😀
We moved onto my current problems. Sarah said that she ran a workshop at the Nottingham INFOday last year (Janet attended, I was at another downstairs) where the question of MM patients and sweating arose again and again. Ba at work she approached my consultant, Dr Cathy Williams, about the concerns and they started investigating the phenomena. In a nutshell… Dr. Williams says that sweating is not a direct result of having MM… that is MM does not produce sweating as part of its MO. The treatments themselves may induce a bit of sweating but not as bad or as random as exhibited by more than a few MM patients. Yet the patients most definitely suffer from prolonged bouts of sweating. Conclusion… they haven't got one… they accept the facts but have, to this point, have no idea why this is so.:-S
I asked one of the questions asked by the phlebotomist… could I be diabetic? Notes examined… no indication from tests carried out during hospital stays. Janet is diabetic and has a couple of testing apparatus… I will check for myself). Onto the next contention…. my arm and shoulder.
I first asked them to note my arm/shoulder problems nine weeks ago… again six, four and two weeks ago. Each time I was told that it was most likely a new area of disease and that Rev & Dex should take care of it. This time I persisted. Could it be a fracture? I had a similar injury, in my right shoulder, in April, 2009 and it took about three months to repair itself. That injury had been caused through picking up my then three year-old grandson… this time I could not recall any one particular but I had been warned by the Orthopaedic consultant at the Queens Medical Centre that such fractures could come easily by over-stretching or twisting the limbs suddenly.>:-(
So Sarah agreed to run the facts by a registrar. Off she went and ten minutes later she was back with instructions to go up to X-ray… they would be expecting me and she would ring me if they found anything. So off I trotted (for the first fifty yards, then I slowed down,,, its a long, long way and I was in a bad state) but I got there… did the necessary and Janet arranged a wheelchair back to a main entrance only fifty yards from our car… she was a star throughout… I knew I could not have made it on foot.
We got home and Sarah rang about an hour later. I have two fractures, one at the top of my arm and another, just across the way, in my shoulder blade. Ah bloody so. The fractures had been caused by an area of MM… and the sweats and general fatigue etcetera, in spite of my glowing bloods, were the result of Rev & Dex fighting hard to expel it. Nine weeks… I ask you.:-S
Sarah is looking at referrals back to the ortho-consultant to look at the possibility of pinning (nearly three years on from his agreeing this course of action), a meeting tomorrow with the haematology/radiotherapy consultant to examine the possibility of radiotherapy and the head of Daycase to look at fitting me up with an effective sling.
Me? I'm plumping and will be pushing (already voiced) for radiotherapy… it has always worked well for me and I know (Sarah agrees) that the ortho-consultant won't carry out any procedure while the MM is still active. The sooner the better, I have changed shirts, tee-shirts and jim-jam tops nine times today (a record) so bring it on.
Nine weeks, I ask you. Still, my Janet thinks that I have been an incredibly patient and very brave little soldier for enduring it all this time (perversely my shoulder and arm feel much better today… so hopefully this means that R&D are not only fighting but could be winning the battle). Get this problem sorted out… bring the Kappa's back down and out and R&D&Me could be onto a winning ticket.:-D
I'm back on track… hot, bothered and about to get a fresh jim-jam… but I'm back.:-D:-P
Thank you for putting up with my wobbles… but under the circumstances I will forgive myself… I have been exonerated… and you know… Janet is right… I have been an incredibly patient and very brave little soldier.8-) 😉
What a day… and what a difference a day makes in the course of MM. Ah so bloody so.;-)
Much love to all.:-)
Dai.
Well my day has been like the curate's egg… good in parts. The good part was that I woke feeling quite alert and with it. The foggy 'out of this world' feeling had been lifted after a decent, tablet free, night.
I got up and decided to shave… having had a very neat and tidy 'goatee' for a few weeks I went with the flow and had a clean shave. I joined Janet in the living room and we settled down for a lazy day… only I realised that I was sweating profusely and felt washed out. So I was alert but still shattered.:-|
After several shirt/tee-shirt changes I was getting fed up… and I felt hot. I have monitored my temperature for the past four hours because I have been here before with similar symptoms and nearly every time I have ended up with a fever. Perhaps I am being too sensitive and also perhaps a little paranoid but the slightest effort produces a bout of sweating. My temperature has remained at 37.10 all afternoon… which is okay but I remain nervous. So its to bed for me… to keep cool, drink plenty of liquids and try to hang on until tomorrow.:-S
I am at the hospital for my interim bloods in the afternoon , so as long as my temperature stays down I can wait until then for advice or assistance. I am fed up of feeling like a wet lettuce… if a simple task such as having a shave wipes me out… anyway, if this is a side-effect of the meds as I adjust to Rev & Dex then all well and good but the first five weeks passed almost without remark. As long as my bloods are okay then I don't mind… I can understand that anaemia might make me feel washed out but not the sweats and this overwhelming fatigue. 🙁
Excuse my moans and groans… but I've been here long enough to know that you won't really mind… Janet deals with enough, I don't want to frighten her… I think I'm doing well enough frightening myself. 😉 😀
Dai.
