Dear Dai,
You have a gift ……………………knowing exactly what to say……………………………………. and exactly when to say it and I for one am very grateful that you have said what I would have liked to say but didn't know how.
MIn:-)

Absolutly flipping brilliant news.
Brightened my day after reading the distressing news from some of our friends. Just what was needed Dai
love Min.
PS lambton worm pronounced warm in Geordie land

Brilliant News Bridget.
What a relief. I am so pleased for you.
Those worries in the middle of a dark night always frighten you half to death.
Sunshine in the morning is a great leveller. Perhaps when you get some new pain killers you can carry on where you left off with the spring cleaning.LOL Just don't do more than your body tells you.…[Read more]

A very warm welcome to you Sally and of course Guy. Please feel comfortable in our unique little 'club'
Its very comforting to chat -even if it is on line to someone who understands how you feel.
Especial in the small hours, but mornings make things look soooo much better.
I hope Guy does not have to spend too long in hospital, and when he…[Read more]

Great News David,
NOW get on with you life and enjoy it. I know how every little symptom worries the he**l out of us. But just living a normal life while you have the opportunity has to be the answer.
I have a pain in the neck too…. Its called Peter!
Vasbyte
MIn

Hi Debs.
Dont despair, it was explained to me that when you start on a drug and it works well its because the 'load' is greater for it to deal with. When the 'load' is smaller there is less of a need to Punch it so to speak, so the results slow down. If the result is little and often that is what matters. Think positive thoughts. The beast is…[Read more]

Dear Susan,
Kevin was an inspiration to us all and he spoke often of his fight with the type of transplant he was able to have. I read his story in the Myeloma Matters booklet and he was incredibly brave to have fought so hard for so long. I know you will have many happy memories of your lives together which will bring you the strength to…[Read more]

Hi Eve.
Im so pleased to hear that Slim is finally making progress…:-) You will have him home soon, and be able to get on with your life again.
I was in your place, some time ago and had not found this site at that time but I know I would have given my eye teeth to be able to hear something positive from others who had been thru the…[Read more]

Dear Tina,
I am so sorry to hear the dreadful news of Patricks passing. I know things will be very raw for you at this time and hope that the many happy memories you have of him both before and during this barsteward illness will comfort you at this awful time. My sympathies to you and your family.
You are in my thoughts
Love MIn

Hi Eve
How is Slim today? any good news to tell us. Forgot to tell you my man had lost 4and a half stone and shrunk by 4 inches since the beginning of this god dam n awful journey.
I lost a stone in weight and lost my mind with worry. I have put it back on but the minds lost in the wilderness if I could only remember why I climb the stairs…[Read more]

Hi Marian,
There is just so much to take in at these consultations and it does not help if the Dr doesn't make an effort to ensure you understand them. But don't worry there is lots of information on this site. Download the info guides and read what you can. Not much of it will make sense to you at this stage but as time goes on and he gets into…[Read more]

I am with you Dai, I often wish Peter had not been put thru the SCT part, as he was doing so well on the CDT.
To be made so ill, by the SCT with no guarantees of how long it will work if at all. (Particularly in my husbands case when he only got 5 months) I frequently wonder if he would have had a better outcome on a very low dose of of CDT…[Read more]

Dear Eve
Your slim problems sound so familiar I could be reading Peters record. He always looks well too when he is 'more ill'
I know your worried about blood clots on lungs but Peter got them when on velcade he had so many of them they could not count them. He was puffing like an old man running a marathon. So breathless that I was more…[Read more]

HiBridget
I know nothing about cystic fibrosis except a friend who has a very good friend who has had a transplant, he took her to London for a short break and it was the 1st time she had been that far away from her hospital. He said he was terrified for her. So I cant imagine how your life has been. But sounds as if your daughter lives life to…[Read more]

Hi Eve,
Cant imagine who you have offended, but don't worry I it was not me!
I hope things are improving for slim and you too of course. How is he and how are you coping. Its a long day at hospitals and very tiring for both patient and loved ones. I think you must be done in by now and praying slim gets home soon so you can have a 'rest' Keep…[Read more]

Hi Kathleen,
I know exactly what you mean.
I have found myself sitting watching the tv with clenched teeth and the muscles in my neck going into spasm. The annoying thing is its not even a programme to get uptight about. Just cannot relax. More recently realise a glass of the hard stuff helps but cant be doing that all day every day so will…[Read more]

Hi Bridget, He had a cough last month when we were on holiday and does do a bit of it when on the 'week off' But all the other side effects which on there own are manageable but when pushed together become a 'bore' Lots of cramp if not enough fluid intake, feeling sick often. Daihhoria frequently with no understanding what has caused it food wise.…[Read more]

Bridget I think its the Revlamid…….
There are rarely two days alike for Peter. There is no rhyme or reason as to what he will feel like or when.
Used to be able to know it was a certain stage of his medication but that is no longer the case. Some days he is full of energy and then he goes downhill fast and has to spent the day in bed. No…[Read more]

Hi Eve
I hope today had been a little better for you and slim. I am thinking of you both
Min

Hi Dai
When Peter was on velcade in October last year, he was well enough to go to work daily. Only for 3hrs per day but it was more about the social contact. He had no sickness or tiredness, BUT after his 1st injection he became breathlss. It took several weeks to discover that he had developed pulminary embolisms caused by velcade. He had 4…[Read more]