Hi Eve,
I am taking great care… I'm due to be at a surprise 50th Birthday party for my youngest brother in Swindon on Saturday but at the moment it is not looking likely. I had planned to go, I want to go and I will make my final decision on Saturday am. My daughter and partner are due to travel with us but she has her car and satnav ready if I decline. For me it is not just a matter of being well enough, which I may be but I want to be strong enough as well and only I will know that and I most certainly will defer to the side of caution… especially as the main event is a meal for approx: 60 of our family… so many loved ones, so many germs.;-)
I woke this morning to a temperature of 35.55.!! It took 3 hours to come back to normal vial wooly hat, scarf and extra blanket… what next?:-(
But overall I am feeling much better with little to no sign of the stomach problems… as a matter of fact I took a Movicol this am and will take another shortly.;-)
Thanks for your support.:-)
Dai.
Hi Pennie,
The median for Rev & Dex is currently 30 months (2.5 years) possibly more (plenty of examples) but possibly less.
My advice would be to take the Carers Allowance for yourself, Attendance Allowance for Andy, housing benefit if needed, and all and any other benefits due to you. It may not buy you all you are used to but it will buy you quality time together… every single day for the rest of Andy's life.8-)
You could always consider some aspect of the law for yourself later if you so wish.:-)
You have paid for all of those benefits many times over, my advice is to squash any king of infra-dig in favour of the time it offers you both.:-)
Regards
Dai.
Hi Suea,
I will echo all that Keith has said, demand a second opinion, it it yours by right and ask for the pomalidomide. I have had 3 plasmacytomas that were sorted by the treatments, so pomalidomide or even Bendamustine might help there.:-)
The very best of luck in such trying times, I wish you naught but well.:-)
Dai.
Hi Helen,
That's all the heavy work out of the way… now next time have more coffee breaks and allow the great and the good to come to you… with only truly exceptional circumstances moving your backside from its place on your chair.
Take a Whoppee Cushion with you to ensure you remember each time you leave and return to your desk.8-) 🙂 😀
Take it easy poppet. xxx
Dai.
Hi Craig & Etta,
I'm glad that everything's going relatively smoothly towards the SCT.:-)
Now, I've never flown so far around the world but I have been at 3 month's post-SCT. Hmmm. I think you should consider Easter as a target… a great goal and while the season might not be as socially important or attractive, Etta will feel much fitter and much likelier to have fewer problems.:-)
Honestly.. at 3 months I was feeling as happy as that bloke Larry just to be driving Janet to the shops.8-)
Dai.
I enjoyed… and appreciated that one Min.:-D
Come on everybody… get your thinking caps on and give us your favourite joke. It doesn't matter how short or long or silly… just that it makes [i][b][/i]you[/b] laugh.8-)
Dai.
Hi All,
Seen by my 'thorough' GP this morning and after examination he declared me 'on the mend'. Apropos of Keith's dilemma, he thought my dose of 40mg of Dex in one sitting to be 'rather excessive'. He didn't envy me having so much at once… I told him that I felt so bad initially yesterday morning that I decided to leave it until today… Now taken and Dexday tm is go.:-P
I enjoyed the rest of Janet's extremely tasty risotto for lunch and my stomach feels far more settled… so hopefully my GP's prognosis is correct.
'Normal' feels so sweet.:-)
Dai.
Hi Everybody,
Thank you one and all for your messages of support.:-)
I woke this morning at 7am to a temperature of 38.10 and I thought OK? hospital it is. I left it until 8am to allow for shift changes and the fact that I would be examined at the Day Case Unit, which doesn?t officially open until 9am.
Now here?s a truth. I will not jeopardise my health by avoiding hospital? but I will only ring in if I really have to? and why? Because the last time I was in with an infection, twelve weeks ago, my consultants started considering alternatives to Revlimid? and that, until I realise for myself that I am truly relapsed, is not an option. 😐
I will cope with any amount of side effects and related conditions? infections, chills, front and backdoor problems? sweats, no-go days and fatigue. But I want to be able to cope with any such problems for as long as I can? and Revlimid is, by far, the best treatment currently available that will allow me that chance. So, staying with Revlimid is my prime concern. Sounds silly I know but generally, outside of these problem periods, I feel good? as well as at any time since the beginning of my MM. Too many hospital visits might create doubts about my treatment for my consultants but there is no doubt for me? and I don?t want to give them ammunition. 😐
I took my temperature at 8am before ringing in and it read 37.6? so I left in until 8.30am and it read 37.3. So? what to do?
Janet woke me up at 10am? it seems I had slept on it. I took my temp: 37.1? no hospital for now. And the good news is that I have improved steadily throughout the day. Motions are still loose but the antibiotics I am on (obviously doing their job) have caused that before during the first few days and I have had mainly liquids, including soup, for three days. Back on small portions of solids now and so far so good. My appetite is coming back and my temperature has stayed down? my last four reading have been completely normal, so I honestly think that the corner has been turned? and after the way I have felt for the past five days or so I am mightily glad of it.8-)
Doctor?s appointment tomorrow? my safety net appointment and I will attend feeling so much better than I did on Monday? if still weak and feeble? but no wonder.;-)
Thanks again 😀
Dai.
Hi Eve,
I hope your daughter enjoyed the Men's Final match.:-D
I thought the result was a fair one all in all… but Andy Murray certainly tied up in the third set and played as if he didn't believe he could win. Still, he played his part and was extremely gracious in defeat… which raised him in my estimation.. as a human being, if not as a tennis player.;-)
The atmosphere was wonderful and I hope your daughter got fully caught up in all the moments and that the memories of the day will stay with her for a long, long time.:-)
Dai.
Hi Stephen,
Full steam ahead… There's no going back now!:-D
Talking of steam, that's the first thing to go, so for the next seven to ten days you will be running on reserve power… You will have to learn to use it sparingly and monitor your intake of fluids and food. I always thought that food would be my big problem but actually my battle was with liquids. I thought that I was taking enough but the medics disagreed (I had to measure everything in and everything out) and I ended up with a full-time dance partner in the shape of a drip stand… Which can rather cramp your style when you need to go.
I created a SCT Olympics blog… Setting myself times for different tasks… Due to different dimensions the times had to be individual but by the end I had improved significantly in all disciplines… Especially the 'Dash'.;-)
I wish you well both physically and mentally for the next few weeks… Especially day four to day ten when it's a matter of seeing through each day with as much grace as you can muster.8-)
Over to you and I will follow with interest.:-)
Cdai.
Hi Andy,
A belated 'best wishes' for your 'Question Time' today… I am sure you will let us know in due course, I just wanted to let you know that you are in my thoughts.:-)
Dai.
Movicol Powders (or equivalent brands) that you mix with water are absolutely essential as far as I'm concerned Keith… especially if you are morphine tablets.:-S
I try to ensure that I take at least one a day when things are good and two a day if I'm feeling bloated. When I feel constipated I will take up to six powders over a six to eight hour period… that normally works but sometimes I'm just too late and a blockage has occurred and I then have to use a liquid pessary as well.:-P
I had a really bad bout of constipation just over a week ago which was both painful and distressing… this was followed by three or four days of very loose motions… the temptation was to back off the Movicol but I have learned my lesson and persevered. I have now had three days of rumbling gripes and I am still very loose but I'd much prefer that to the constipation.:-|
It seems that I will have to put this quick switch motions down as a side-effect of Revlimid.. not a bad one but one to monitor and be wary of. Like you I am amazed how quickly the situation can change.:-(
Dai.
Hi Keith,
What strength of Clexane/Enoxaparin are you on?
I was on 140mg for 6 months (from July '11 to end of December '11 – started when I developed a DVT during Velcade) and since then, starting in January this year I have dropped to a maintenance level of 40mg… making it a year in total.
I have lost weight overall but my stomach always looks extended (a bit of a beer belly without the advantage of the beer:-( ). I have had periods where my stomach has resembled a dart board, with similar coloured segments… but I now have a system where I start on the very outside and alternate… with the second on each side in the middle, back to the outside, into the middle… again alternating top and bottom… you get the idea.
It was worse with the big dose because of the bigger needle and the copious amount of liquid… [b]an unintended, sometimes involuntary rub of the area after injecting is the worse thing you can do because it causes bad bruising[/b]… you have to allow the liquid to disperse naturally… with a 'grin and bear it' if it stings.
The 40mg dose is a doddle in comparison…. with a micro needle and far less liquid to disperse.8-) But I'm told I will be on it for life.;-)
Regards:-)
Dai.
Dear Angie,
I am so sorry that so much was laid on your Mum, giving little to no chance of fighting her disease once the complication of such an aggressive secondary disease as the Plasma Cell Leukaemia joined forces with her existing Multiple Myeloma. As I said earlier I am glad that that your Mum was able to request the start of palliative care… It meant she was fully aware of her situation and despite her discomfort and fears she was able to dictate her next steps.:-)
I am also so sorry that you and yours were not able to spend more time with your Mum as the end came so very quickly. Take a few days but please try and get back to us with any queries or advices regarding what happens next and about how you are coping.:-|
Regards
Dai.
Oh, I don't know… I'm sure I could entertain them with some graphic up-pan shots of me scraping solidified turds out of my back passage with my fingers while bleeding profusely until finally unplugged.:-D
And they could follow me through my Tuesday Dexday TM… I could sweat profusely at will and show off my embarrassing body as I changed shirts/'T' Shirts for the seventh time that day… the early ones could be wrung out for camera.:-0
Then there could be the monthly consult where we wait for my consultant to find out what's happening by pulling up my results on the computer… because she won't know herself until then, so there will be time for a quiet drumroll until she is satisfied and perhaps she could be persuaded to give a Caesar like thumbs up/down to indicate whether I keep on living or descend into end of life scrabblings for a range of three to six month options before the hospice.8-)
I could entertain like hell… but each time I went online to the forum they would have to back off because as I would explain, the members think that I'm a sausage short of a picnic and you lot are a bunch of voyeurs who have no interest in the disease only the death… and the entertainment that that death affords.:-D
So, not wanting to be though of as a sausage short by my chums, I regretfully decline.:-(
Dai.
