Hi Dai and Everyone else
I was not sure were to put this post ,and as this topic is included I thought you might like some % of are problems with meds.

As you know Slim did CDt 6 cycles now Velcade on 4 Cycle.=10 Cycles altogether to date.
Out of 10 cycles we have only had the tablets ON TIME twice making that 20% of the time,on the bad days…[Read more]

Hi Debs
We will not be making it tomorrow,left it till last minute,because it means a stay up there or 160 mile around trip,from the coast in Kent and Slim on first week of 4 cycle Velcade.
Been to the hospital this morning,for bloods,and he is just not himself,so tomorrow is out,was looking forward to meeting everybody,but either way with a dog…[Read more]

Great to see more and more people joining in this game.

I am going for GARISHLY

So HLY are the next letters to use.

Hello Dee

Welcome from me too I am pleased that your husband seems to be a bit better.

It is a huge shock to receive the diagnosis. Stephen was 53 when he was referred to an orthopeadic (sp?) surgeon to try to helpe with what was thought to be a trapped nerve in his back.

We had never heard of mm. He had been a builder all his working…[Read more]

It's ages since I tried to think of words I haven't even looked at a crossword for weeks.

I am going for NECESSARILY and keping my fingers crossed that we haven't had it before.

That leaves ILY for the next person

For those who may not have played this before, you MUST use the last 3 letters of the previous word somewhere in the word that…[Read more]

Hi Elaine
Just popped in to say welcome,I am a carer and do not know how i would have managed without this site and all my cyber friends they have helped me so much through some bad times,so its all been worth while.and you also gain so much knowledge,and helps you to know what is going on in other hospitals.
Also what treatments are…[Read more]

Hi Deedee
Its all a bit mind blowing at the moment for you,but things will settle down,Its hard when they have been so fit,and now they seem so ill.
Thing will get better,and you will find that inner strength that you need.

I find it helps to find out all I can about MM it works for me,when things seem to be heading in the wrong direction,I…[Read more]

Hi Caz
Just to say welcome,envy your trip to nz,we should have being going this year have a daughter in Mapua.We will get there again was my husband gets remission.8-)

Once you know how much damage to bones there is,you will soon learn to adjust your strength will come back just takes a long time,some people sail through treatment other people…[Read more]

Regarding the pneumonia jab, Stephen's mum looked up her paperwork from when she had it and it said that she would not need it again.

Mind you although she's 85, has angina, asthma and is very overweight she still has her sense of humour and seems in better health than Stephen. She laughed when I said maybe it is 10 years and not forever but…[Read more]

Hi Elaine

It's a great idea to write things down as you think of them It is my husband that has mm (Stephen diagnosed late 2008 when 53)

We never remember to take a list of questions with us and always say (afterwards) "oops we forgot to ask……"

Fortunately Stephen's consultant is more than willing to accept direct phone calls.

We…[Read more]

Hey Debs

Grab the compliments Any and all. Kate Middleton? Why not?

Good luck with your fund raising. You are putting me to shame for not doing more (I don't think buying Christmas cards counts)

When I think that our grand-kids have made more effort to raise funds for "that mm thing that Pop's got" than Stephen and I have I feel quite…[Read more]

Debs I would know you anywhere hair or not.

Just don't stop smiling if you want to be recognised. Hope you are feeling well

love from Gill xxxx

Gosh I wonder if Qutenza and Coenzyme Q 10 have anything in common. I know that Q 10 has helped Stephen (mm husband) a great deal

If there is something better then please everyone post all that they know

Gill

Sorry you had to join us but welcome. There is not a great deal that I can add to the advice you have had from others. Eat when you can and eat everything you fancy.

HEY Pig out sometimes 🙂

Gill xx

PS what does HAKA mean in English

Hi I have been off line for so long I ended up with withdrawal symptoms (moan for another day).

But now I am catching up I just wanted to say the very best of luck for Bruce's SCT.

Everybody has given you great advice. The only thing I wish I had done differently was I wish I'd kept a diary when my husband (Stephen) was in for his SCT.

I…[Read more]

We have already had our flu jabs. We have had them every year since Stephen was diagnosed with mm (aged 53) I did not qualify for the jab automaticaly at that time as, although Stephen is my Toy Boy ;-), I was only 58 HOWEVER I qualified (found out after a bit of research)because I lived with Stephen who has a compromised immune system (I am not…[Read more]

Hi Bridget
Nice to hear from you hoping you are keeping well,and have pain under control:-)
It,s the only way,Otherwise you would just give in,it,s so important to stay positive,just for your own well being,and if you can make people on this site more positive,then it has achieved a good result,and you do this all the time.;-)
We are going in…[Read more]

Hi Gina Mum and sister
Glad to see you are still holding out:-)
must be hard but try looking at some of the trials,you could always ask for a lower dose of Dex,it would give your mum a bit more energy.
Must be hard maintaining a job,fitting your own family in,then looking after your mum,hope your mum takes advantage of all she is due to make…[Read more]

Hi David
Yes it does touch your heart,I could take you some were in this country, very much the same,my grandson goes to a school in Valance school in Westerham in West Kent.A school for profoundly special needs children the only one in Kent

When you go in there are a mass of wheelchairs with smiling children in them,some can operate a switch…[Read more]