Thank you Ann

I have come along way in the last 5 years, 4 years of Slims illness and 1 year on my own,it’s a big learning curve,and I still look in on cyber friends,see how Tom or Andy plus a few others if they don,t post on the Facebook site UK Myeloma ,I worry. So Myeloma never really leaves my world although Slim has gone.

I just wanted to…[Read more]

Hi Andy
Glad to hear your doing so well. Pleased to hear that you are coping so well with Pomalidomide – I am now on cycle 24 and just can’t believe where the time has gone. I too get the dreaded cramps – even in my hands if I grip something every now and again and a few other side effects that you know about well enough. My only real downside…[Read more]

Hi Mandy
I’m really sorry I don’t think my post posted last week. Yes I am local in Brentwood.. Please feel free to email me. I’m not sure how privacy works. It would be nice to chat. It’s not an illness that you hear about much so at times you can feel lonely with your own thoughts.

Kay x

Hi cupcake
I have not been on this forum for a few years and I believe I was meant to come on here tonight and read your posts. I was diagnosed with smouldering myeloma in 2009 at the age of 44 at Queens. I had treatment in 2011 followed by SCT then more treatment in 2014 and my 2nd SCT in 2014 both in Barts. I was at Barts today and my PP is 11…[Read more]

My condolences to your family.

As many have said on here,Scott always seemed to be beating the odds,I remember him talking about SCT although kidney functions were not great.

He gave lots of people hope and this is what this site is about,hope for a cure plus watching people who seem to be full of hope and beating the odds,Scott is one of many…[Read more]

Thank you Richard,that was kind,

I often think about Dai,and others and people who have stopped posting,like Jo .

Deb Bones lost her fight just after Christmas as well,it’s a sad year all round for many of us,but we do live in hope that away to control Myeloma is coming,plus we have the knowledge that all the people on the trials helped

I am…[Read more]

I found they gave my husband the anti sickness pill to near his meal!!!!
If it’s taken half an hour before a meal it settles the gut,so that might be worth trying,and yes some hospitals keep you in until you can hold down your food,Slim just lied!!!! But that was Slim.

Try a piece of pineapple to clear the pallit ,drink anything you can,it’s hard,fizzy drinks helps,it’s just a matter of perseverance .

Hi

I am sorry to hear about your news,it’s not very nice when all hopes seem to fade,!

You must be absolutely shattered with all that’s been going on since last January,with hardly any time to take everything in,your experiences of hospitals is becoming more commen place,waiting hours just to be put on a drip,when your husband was so ill,it is…[Read more]

Hi Rosie
So sorry to hear your sad news,it heart breaking if you are not expecting it to be so sudden,I had Time with Slim to prepare are selves for what was going to happen,you can never tell with Myeloma all it takes is an infection or pneumonia ,I nearly lost Slim at the very beginning with pneumonia,so we felt lucky to get another 3 years…[Read more]

Hi Fuzz

Well you are showing some signs,that could be a number of diseases,a simple blood and urine test should show the possibility of Myeloma.

Doctors only come across Myeloma once in a life time as there are only 3000 cases a year in GB.

I would make a note of your weight and height,plus how many times you feel sick,your kidney functions…[Read more]

Hi Vicki

Nice to hear from you, I think you are doing the best thing not coming on here to much when you are in remission ,best to lock the Myeloma away in a cupboard mentally ,and enjoy life as much as you can,because we all know it finds you in the end,so enjoy today.

I have good and bad days,try to keep myself busy and out of the house,after…[Read more]

Hi Maijic 30

Reading your husbands history,he has had thalidomide ,then Velcade then pomilidomyde has had his STem cells harvested,then Polidimide and because he has an agressive Cancer they are recommending he has DT pace,and in between this he has had pneumonia!!!!! Plus he has had compression on his spine,hence radiotherapy.

He has age on…[Read more]

Hi Newbies

As a very oldie on here may I suggest instead of joining on some ones post,you start your own post,telling people who you are,what hospital you go to and what treatment you are having,plus of course any problems. This will help people to help you in person!!!!

When I first came on here,some one posted. WHO THE HELL ARE YOU!!!!,I…[Read more]

Jan

That’s the way to go!!! No regrets enjoy what you have and never give up hope.

The fact is no one knows what lies in the future,just enjoy and never give up hope,it will take people a long way,and every day is a bonus. Love to you all.

Hi Kaye

It was my husband who died,and it was a long slow death,so when you are not expecting it,it’s harder,grieve hits you very quickly and brings out all sought of emotions.

It is very hard for anyone to speculate what went wrong concerning your mum,if you write or ask to see her consultant I am sure he would explain why it was not picked up…[Read more]