Figers crossed for you and your husband that it is indeed a blip xx
Hi Debs
I think I have said before that Stephen does not visit this site but is always interested in whatever is posted. He has always sufferred from PN and the when on Velcade it became unbearable
He aked me to tell you that his PN reduceed significantly once he started taking the food supplement Coenzyme Q 10 (obtained from Healthspan Thanks for the site Min much cheaper than H and B) Stephen took it first of all to reduce the cramp in his hands
He takes 200 mgs of Q10, 5 – 10 mgs of oramorph (even if he has not had to use it during the day) gabapentin and paracetamol before he goes to bed. And he swears by bedsocks (ordinary day socks are too restrcitive) he started wearing them after seeing Prof. V regarding radiotherapy advised him too. His feet sometimes get get too hot but he says he would rather just hang them out of the bed than put up with PN.
He doesn't wear PJs and he started the bedsock lark by borrowing mine (pink and fluffy you can imagine how we laughed) but now we have some manly black ones but still share mine. I am just about to order some more from Amazon. I don't know what they will be like but M and S and Matalan seem to stick to seasons and there are no bedsocks at the moment.
I do hope you get relief soon love from Gillxx
Hi I hope in the nicest possible way that Russell and Andy end up not joining us as you do not have mm just a slight blip in perfect health. Good luck Gill
What a fantastic thread. Memories? Too many to know where to begin. The smell of roasting peanuts being cooked in Woolies (woolworths to you young uns). Players number 6 cigarette vouchers (stopped smoking years ago but back then when old enough we smoked ourselves to death to get enough vouchers for a genuine teak coffee table for our first home)
As a child I remember Woolworths and Sainsburys both had wooden floors that made a creaky sound and in Sainsburys a lady with a hair net would "carve" off a slab of butter from a huge block with large wooden butter pats and bash it to a block, the butter pats had patterns on the side and would leave an imprint which, on a warm day, would be gone by the time it was unwrapped at home and put into the larder (no domestic fridges in those days. The bottles of milk, one red top and one gold were put into an enamel basin and left out on a windowledge that got no sun). Real butter? Yup
I was an only child, and although we were not rich we had a very decent life style (Dad was Head Floor Waiter at the Dorchester then the Ritz and then the American Servicemen's Club the hours were unbelievably long).
I hated butter and would eat dry bread. Too polite to refuse a slice of bread and butter at friends' houses I would force the offending slice down. Imagine my Mum's red face when, after me coming home from tea with a friend and declaring that thir bread and butter tasted nice, my mum asked the other mum what brand it was and found out it was the cheapest block of Stork margarine you could buy and the friend's mum blushed to the roots in shame.
Thank you so much for this thread Min. It has been a very mixed day here for mm results and I am still trying to digest all of that. How lovely to share some cherished memories with you all.
Gill xxx
Hi David
Are you sure your itchy legs are not caused by the "no see ums" :-/ I only popped out to the garden briefly towards dusk and the little blighters got my legs, back (under baggy t shirt) and the tops of both feet.
Why Oh why did we ever put in an 8 foot diameter fish pond in our garden the no see ums thrive around it at this time of year:-(
Sleep tight David I'm off to bed Gill xx
Dear Bridget, and the rest of you all
Let's get this straight. In my view (and I can be very self opinionated!) this site has many facets, and uses. It is full of information, it puts us all in contact whether mm people or their husbands, wives, children, parents, friends, secret lovers?? (that would be fun:-) with others that this wretched illness affects
I have always felt guilty if I had good news somebody else feels guilty if they have bad news.
MM is very individual some people have good news some people bad news. Let's stop hiding whatever news it is from each other. I have posted on here when I am in floods of tears and will not go to bed for fear that Stephen will hear me sobbing and worry about my worries.
On here I feel that others that post do not have to pick up my burden but many choose to give me a hug and a pat on the back sometimes and thank you all for that.
For those of us of an age we could make a slapstick comedy film called "Carry On Posting"
Love to all Gill xxx
PS I am tempted to delete this post as I think my pig headed self opinionated stubborness shines through every word and I wanted everybody to think I was soft and cuddly, still weighed 8 stone and looked like a film star. No all you clever clogs out there not ET xxx
Just to say fingers crossed that he turns the corner soon adn thinking of you both Gill xx
Hope you are back home and on your way to your holiday very soon. Good Luck Dai Gill xx
Hi Ted
Sorry I am late in saying welcome and sorry you have to be here. Do keep dropping in everybody on this site is very friendly and you will get information and support when you need it.
all the best Gill
PS I cannot be the only one that thought Michael Caine had added his picture can I?
I think Stephen has got used to my bullying tactics since he has been ill. I must admit he has the patience of Job. Although it is accompanied by a huge dose of sarcasm. When we go to the hospital and Dr S asks How are you at the moment? Stephen says very pointedly " Let's ask Gill"
Fortunately the Doctors and Nurses at the small hospital Stephen attends know him only too well and would rather ask me as Stephen is not a very truthful bunny when it comes to his health and will always say "Oh I'm fine"
I do hope Peter is feeling better Min and will be home again soon Gill xxx
Hi Bridget
Good luck with your radiotherapy. Stephen can't wait for his hit as he is hoping, like you, that it will be like last time and ease the pain.
I would not dream of giving advice to what treatment you should choose, but I have read that Bendomustine is the new lifeline for mm. They have used it a great deal in the States and before Stephen's oncologist realised that Stephen had enough stored stem cells for a second transplant he said he would try to get him on a Bendomustine trial as that is the only way in our area that it can be funded and Dr S thought it a great way forward.
As for staying in for a few days. Before I had even looked on here I spoke to Stephen regarding what I called his silly reluctance to go in when his Hickman line was infected. He told me that, for him, facing a shortened life, any day away from his home, his garden, playing with the dogs, sitting on his sofa, sleeping in his bed etc. was a waste of a day.
Dearest Bridget You know that we are all rooting for you xxx
PS I have just put my hand in my dressing gown pocket for a tissue and come across one of Stephen's socks, rescued from the clutches of our older dog who gets into the dirty wash basket and steals Stephens socks she dosen't chew them but sucks them to death. Obviously it wasn't much good for my tears and sniffles but at least it made me smile:-) Hope you do too
PPS His feet aren't smelly and she does exactly the same if she can get hold of his clean socks
KITCHENS? KITCHENS? Don't get me started. Isn't there an old saying that the cobler's childrens' feet went bare? How about the most respected building contactor in the area never finishes a job at home?
Yup when Stephen was working and employing a small team. A great deal of their work was to gut out and fit new kitchens This was done within a day or so mainly for local HAs (Housing Asociations)I still have letters (which I am very proud of Stephen over) from HA tenants (especialy elderly residents) thanking him for fitting their kitchens, leaving no mess and having such lovely "boys" working in their homes.
At home? It took years to finish my kitchen. We lived for months with the floor dug up and all the pipes exposed so that the Central Heating could go in and I got quite used to hopping over boards to get from sink to fridge to the bit of spare work top that was balanced on the 2 (2 only) kitchen cupboards.
OK as Min says Rant Over. It got done in the end and he made a darn good job of it. It frustrates him no end that he can no longer do that sort of thing because of all the bone damage this b**tard mm has caused, but he is still capable of pottering and doing a few bits here and here.
Hope your kitchen turns out to be just what you and your young bride want Tom
love from Gill
Hi Min
I do hope you are having a more peaceful Day and that Peter is doing well.
What is it with men? A few weeks ago Stephen was due to phone one of his nurses to make an appointment to have his Hickman line flushed later in the week. He woke that morning with a temperature and rigors.
He said he would tell Sarah that he was not well when he phoned. Lying Hound! I was in the room when he phoned all bright and breezy and not a word about being unwell.
I did not even hide my anger. As soon as he had put the phone down I phoned Sarah, in front of Stephen, and told her the truth. She spoke to Stephen again and persuaded him to call in and let her check him out. I got a slightly muttered remark from him about being a grass and when we got to the hospital she took his temperature checked him out and (as he put it) grassed him up to Dr. S on the phone.
Result 3 days in hospital on an antibiotic and saline drip for an infection in his Hickman line that had started to get into his body.
When it comes to idiot husbands I feel as though I have been there, done that and should have the T shirt that says "I GRASSED MY HUSBAND UP BIG TIME"8-)
A little light relief for the weekend Gill xx
I?m Fine Thank You
There is nothing the matter with me,
I?m as healthy as I can be.
I have arthritis in both my knees
And when I talk, I talk with a wheeze.
Sleep is denied me night after night.
But every morning I find I?m all right.
My memory is failing, my head?s in a spin.
But I?m awfully well for the shape I am in.
How do I know my youth is all spent?
Well my ?get up and go? has got up and went.
But I really don?t mind when I think with a grin,
of all the grand places my ?get up? has bin.
?Old age is golden? I?ve heard it said,
But sometimes I wonder as I get into bed,
With my ears in the drawer, my teeth in a cup,
My eyes on the table until I wake up.
?Ere sleep overtakes me I say to myself.
?Is there anything else I could lay on the shelf??
When I was young my slippers were red,
I kicked my heels over my head.
When I was older my slippers were blue,
But I could still dance the whole night through.
Now I am old my slippers are black,
I walk to the store and puff my way back.
I get up each morning and dust off my wits,
And pick up the paper and read the ?obits?.
If my name is still missing I know I?m not dead.
So I have a good breakfast ? and face what?s ahead!
On a more serious note do we not all get a little more confused as we get older? As far as I am aware I do not have an "end of life" illness but I am hopeless when it comes to what day? what time? etc Gillxxx
aged 35 NO? OK 45 NO? 55? NO
61 retired live and adore an mm person
