[PhilipandfionaParticipant]

Have you thought about hypnotherapy to get over your fear of needles?

[PhilipandfionaParticipant]

Hi gill
I remember you when i first started reading this discussion forum earlier in 2012. What a lovely tribute to a lovely man, and how lucky you were to find each other.
This disease is so awful taking away so many hugely loved people. i hope a cure is found soon.
with love x
p.s. what a devil pinching your bum :)))

[PhilipandfionaParticipant]

Hi Eve

Thank you for coming back and updating. i mainly hang out on the uk MM facebook page these days not here, although this is also a wonderful place to be.
I’m glad you’re living your life to the fullest. I’ve retyped a sentence several times, but it doesn’t come out right, so i shall just say, Slim was a lucky man to have you, and we’ve been lucky here to have you, and i’m so pleased that 1 year on, you’re choosing life.
xx

[PhilipandfionaParticipant]

Hi

Andrew did his first facebook posting today. Off a ventilator, and first session with physios to get him walking again.
As Tom says, onwards and upwards.

[PhilipandfionaParticipant]

i’ve been stalking facebook for posts on him – i believe he’s improving.

[PhilipandfionaParticipant]

Hi
I think he’s in intensive care, but slowly improving. He’s on Facebook and a member of hte UK myeloma FB suport group, so some information there if you search for him.

lost of people have posted lovely support to him and his partner.

[PhilipandfionaParticipant]

Dear Vicki

I am so sorry to read this. He was a lucky chap to have you so staunchly by his side. xx

[PhilipandfionaParticipant]

Hi dusk

sorry, i should have been clearer – soap and water are top of the list. our hands and faces have never been cleaner!
Philip was told to eat as though he were a pregnant lady, so yes, some foods are avoided. (i’ve told him this does not mean claiming to crave cake and chocolate!)

[PhilipandfionaParticipant]

hi dusk, how are you?

one of the reasons that REvlimid is given in 3:1 week schedules is to give your bloods a week to recover.
My husband is often neutropenic by the end of the cycle. He takes GCSF once a week to boost the blood count. I think it is GCSF but could be something similar – basically growth factor i think – same stuff you take before the SCT to boost production. I think the steroids also have a bad effect on the bloods too. It’s basically a balancing game between keeping hte lid on the MM and causing other problems.
As for managing risk – my husband spends a considerable amount of time every day keeping the house clean. He limits exposure to other people’s children (we have 2) and doesn’t frequent places that are too crowded. We always carry the antibactierial hand gels with us whereever we go, and have them by all the doors in the house so visitors can use them before coming in.
So far, he’s managed to have very very few bugs, but it does take a lot of work to stay healthy!

[PhilipandfionaParticipant]

Hi

just a quick post – hubby has been on dex and rev for a year now, back in remission, but staying on for maintenance and suppression purposes- (diagnosed 3 1/2 years ago).
he gets tireder each cycle – saves his energy for what he wants to do, so doesn’t do much excercise – particularly as he got a lot of bone damage.
Our doctor says it’s definitely the rev making him tired – that and the lack of sleep when he’s on the dex.
nothing is the same any more, but there are silver linings to each and every cloud, you just have to look a bit harder to find them. I told hubby he had a pass to do whatever he wanted – he decided he wanted to be home with the family full time – so that is what he does. he stopped work, and now looks after the house. it’s different, and not what we planned for, but it’s still a good life.
he’s 50 in october.

[PhilipandfionaParticipant]

What a lovely thing to do. Congratulations xx

[PhilipandfionaParticipant]

Gosh Vicki

I am so sorry to hear this. It breaks my heart to read this. I was just browsing the news section full of hope for new treatments, and then the reality strikes again.
I hope that you can get Colin home as soon as possible, and have some quality time with him, and that he stays infection free for a very long time.
wishing you both love and peace and strength.
x

[PhilipandfionaParticipant]

oh crap.

sorry to hear this. as Tom says, onwards and upwards.

[PhilipandfionaParticipant]

If you are near Redhill have you considered going to Brighton? We see Dr Kevin Boyd there who is excellent. The good thing is that he will happily refer to the Marsden for a 2nd opinion as and when needed so you get 2 for the price of one.

[PhilipandfionaParticipant]

Hi
I am sorry nobody has replied. I think your question is a bit broad. The thing with MM is that it is so individual, some sail through, some don’t.
All the places that do SCT seem to be good. And I wish your relative the best of luck.
Best advice: read all you can here in SCT experiences and ask the dictors. Be firm.

[Author]

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