Welcome back Bridget. The silence has been deafening:-)
I am sorry that you have been poorly and that you have had bad news what a heartbreaking bummer. Stephen is in the middle of further RT for his spine and his pain has eased a little after his first zap so we are hoping the other 3 Zaps will help even more I do hope the same for you
Love from Gill xxx
Thank you so much Debs for your offer to let me know who to write to I will be in touch. As for hate mail how could anybody be nasty to someone so pleasant and, obviously by your photo, so pretty.
Good idea Min I am in the middle of filling out an online form to Watchdog.
On a general note the advice to contact our MacMillan nurse. What does that mean? I have read before that people have a MacMillan nurse or a specialist nurse but we know nothing of these.
Stephen has a GP who prescribes what the specialist tells him to (that's a rant for another time as the GP usually wants to argue with the specialist over the strength of drugs) and a haematologist/oncologist (the specialist).
We do have a 24 hr number for the chemo nurses but that is for a total emergency
Are we missing out? Gill xx
Hi David
I am glad you are OK you maybe feeling like S**t but you will be amazed at how it starts to turn around. I really wish that I had kept a diary when Stephen went through all this first time round. Just a sentance every day would have been a good indicator of improvement.
I cannot help over whether you should have a booster. I suppose the question is if the vaccine is still in your system or whether it has been eradicated. I suppose you could get round it by banning all visitors and becoming a hermit until your numbers improve>:-)
Good luck Gillxx
Hi Sharon
Fingers crossed that it is a blip as David puts it. We were told recently by Stephen's specialist that allos are being used more and more here in England (following the USA I think)as the drugs for GVHD are so much better now
I hope that there is someone on here that has experience of an allo and can give you some information
Good luck Gill
Oh Donna
There is so little I can say, I am so sorry.
My daughter is called Donna.
I don't know if you are aware that the name Donna means lady.
I just bet that you were one very special lady in your dad's life.
Wishing you strength and comfort in the weeks to come
Love from Gill xxx
Hi Kay
Welcome to the site that is very elite, very supportive, very friendly and helpful and a place where everybody wishes they did not have to be.
Very good luck with your treatment let us all know how you are getting on.
Kind regards Gill
I think I forgot to say Welcome Home. I hope you are feeling OK and managing to eat. Don't forget the teaplate trick:-)
Tiny amounts of food are manageble and you will soon be doing an Oliver Twist and asking for more.
Good Luck from Gill xx
Good news indeed Georgina. I hope she continues to improve
Kind regards Gill xx
Dearest Roz
There is so little one can say at this awful time. I hope and pray that he is comfortable, peaceful and pain free. Please post when you can. Not because we are nosy but because we all have learnt to care what happens to each other , and the least we can do is send our love and support.
Heartfelt love Gill xxx
Dear Roz just to let you know that,like everybody else, Stephen and are thinking of you both
love from Gill xx
I do hope all goes well for you and I am pleased that you got your Christmas dinner
Mind you I am pretty angry that you experienced pain when they fitted a Hickman Line. What do these guys do ???? leave it to the plumber????
You mm lot have enough to deal with without going through unnecessary pain and discomofort from common everyday procedures.
Good luck with your next course of treatment
Love and best wishes from Gillxx
Thanks for the tip Min and Bridget.
I will experiment with the heating controls and see how we go. Like you when we were both at work the heating was not on much.
If it works out very dear we will have to go back to how things were when I was a child. One coal fire, a hot water bottle in bed, liberty bodices, badly hand knitted sweaters and chilblains to name just a few of the discomforts.
Mind you on the other hand sipping hot ribena in front of the coal fire after crying because you had played snowballs too long and your hands were burning was good and having your (badly knitted) mittens and socks warmed on the fire guard before trudging to school was cosy.
As an only child I remember envying a friend who shared a bed with her sister as I knew if my cousin Jen came to stay we would cuddle up in bed for warmth. When she confided that her sister wet the bed every night my envy evaporated:)
Keep warm and well everybody Love from Gillxx
Hi Bridget
I put in an order from Wiltshire Farm today for Mum In Law and just wondered if your mum had tried any yet.
We were down at MILs last week and were fed on these. I must admit the ones in sauce or gravy have a better taste but MIL seems to enjoy them all, apart from those in "funny sauces" cider gravy etc:-/
Hope you are Well Gill xxx
Welcome home hope things are improving for you both Gill xx
Cold icy step sounds much more like cruel fun than our bottom step on the landing which is warm and cosy. It is where we used to make the kids sit if and when they were very, very naughty. 1 minute per age eg. 3 years old = 3 mins 4 = 4 mins. Obviously by 5 we were beating them sensless:-).
Cannot understand how they became such great adults now in their 30s and 40s
Yes we do carry on no matter what this rotten illness slings us. Good job being doen done by all of us xxxx Gill