Hi Brian

Sorry to welcome you to the MM club. I got a lot of helpful advice on the “confusing journey” thread.

I too hope to stay asymptomatic for as long as possible. The hardest part has been getting my head around the no treatment until there are signs and symptoms that the MM is causing end organ damage. It has been described as the Sword of…[Read more]

Hi Susie,

Sorry I can’t help you with advice re the meds regime but sending you a virtual hug. Hope you are feeling a little better now. One of the posts on the “confusing journey” thread advised me to listen to my body and rest when it was telling me to.

Seems good advice particularly as you adjust to the effects the drugs are having upon you.…[Read more]

Hi Nick, all good advice from previous posts. This is a fabulous place to get the advice and support you need.

I can’t offer any additional advice except maybe to reinforce the fact that Myeloma is treatable ( if not curable) and she has the same chance as the rest of us of achieving remission and a good quality of life for many years.

I wish…[Read more]

Well folks, I have not been on the site for a few weeks, I had asked for a second opinion as I was told that I would definitely be on treatment within 18 months and couldn’t understand how that could be predicted in MM. Sooooo upset by the news. I had really thought that I might stay Asymptomatic for some years yet.

Anyway, still definitely…[Read more]

Hi Susie,

I haven’t been on for a while, it looks like I too will be joining the ranks of MM on treatment shortly as all the numbers going (quite quickly) upwards.  Now on six weekly monitoring and feeling a little sorry for myself, so like a little turtle popped my head back into my shell.

I can understand why you would not wish to join the…[Read more]

It is good to hear from you Don, glad all went well and hope you feeling stronger every day.
Best wishes Karen

Hi Susie

Glad to hear all went OK, although I am sure you will be waiting to hear back from the Consultant.
It  is such a waiting game this MM isn’t it.

Sorry you are still in pain with sciatica.  Hope all is well when he rings you back.

I have a small heat cushion which I warm in the microwave and put in the small of my back when sciatica k…[Read more]

Hi Susie,

Definitely wishing you luck for tomorrow. I am sure you are feeling worried about what they have to say. I suppose the “but” is that it is oddly reassuring that behind the scenes the Doctors are working to keep you as well as possible.

I am sorry to hear you have been in pain, sometimes physio seems to make it worse before it gets…[Read more]

Dear Don,

Best of luck for your operation tomorrow. I am sure you are in good hands.

I look forward to hearing how you got on and also how the nurses cope with your irrepressible humour. I expect you will be like a breath of fresh air as you recover from the surgery.

Best wishes to you and your social secretary, financial controller and life…[Read more]

Hi Don,

Crumbs, what a time you have been having, hope all goes well with your keyhole surgery on Monday.  You must be feeling quite battered by everything that has been happening to you.

I too love the humour, keep positive, medical science is amazing these days.

Best wishes

Karen

Hi Steve,

My GP was great but it is for sure a waiting game as you go through all the tests.
What my GP initially said was that every answer raised another question and this may be where you are in your journey right now.

I wish you well.

( I emailed the webteam about the tradestore advert as it looks to appear on lots of posts…inappropriate…[Read more]

Hi Susie,

I don’t live in your area, but is there a support group near you? Might be how you could talk to other people using the same hospital team.

Karen

Hi Karen

I don’t really know if I am coping well. It is such a devastating thing to be told you have cancer. I too have the thought pop into my head every day. The Consultant told me I was lucky because I was picked up early through routine screening and he sees people who are symptomatic and with kidney damage etc and in a much worse state than…[Read more]

Hi All

I have had a blood giving day today..they took a whole armful!! I have my first appt for the Haemachromatosis on Friday so repeat of all blood tests required and  going for another scan tomorrow. Have to say I find it really hard that since March 2014 I have become this person whose life revolves around hospital appointments and…[Read more]

So glad it is good news Susie, fingers crossed all well at your next monitoring. Can they sort out the compressed discs and compression fracture?

Karen

Hi Susie, so glad to hear MRI scan not as bad as you had feared. Fingers crossed for your results.

Oh Sal, what a waste of your time, you must have felt very frustrated.

Best wishes Karen

Also Hi to Tony and Val, I have been so happy that my thread has given me the chance to share experiences with so many people. It is a privilege and a pleasure to read about others journeys.

I hate being a pin cushion, I always get a bruise that takes ages to go, but at least they don’t have to try more than once so there is a positive in there…[Read more]