I drank soda water which really helped settle a feeling of nausea and Robinson’s Lemon Barley Water.

Hi Susie.

I had trouble with my mouth it’s due to the chemo. The chemo works by killing fast growing cells and your mouth unfortunately is full of them. Good oral hygiene is essential. I used Nystatin and Difflan mouthwash though I was told to stop the mouthwash by my dental consultant due to it’s alcohol content and use warm water and salt…[Read more]

Hi Susie.

I had trouble with my mouth it’s due to the chemo. The chemo works by killing fast growing cells and your mouth unfortunately is full of them. Good oral hygiene is essential. I used Nystatin and Difflan mouthwash though I was told to stop the mouthwash by my dental consultant due to it’s alcohol content and use warm water and salt…[Read more]

Evening Helen.

It’s my Dex night and my forum catch up.

Glad to read you’ve had a good response to Pomalidomide. Hopefully the Cancer Drug Fund won’t remove it from its list of available drugs.

You still have some control in your course of treatment Helen which is good. I don’t know what I’d do even though I have thought a lot about what I’d…[Read more]

Oh dear Mike, the most likely explanation is my misunderstanding and misinterpretation of what was actually said to me…I still feel like a rabbit in the headlights and so dis-empowered when I go in for a monitoring appt so probably mis heard.

Thanks for your response, it is much appreciated.

Kind regards

Karen

“so who’s to say you won’t grow old and penniless because you spent all your pension money having holidays and enjoying life thinking you wouldn’t need it for later?”

This is very true Rebecca, thank you for a smile moment on a damp and dreary morning.

I think we should all live our lives to the full and enjoy every day.

I try to ignore the w…[Read more]

“so who’s to say you won’t grow old and penniless because you spent all your pension money having holidays and enjoying life thinking you wouldn’t need it for later?”

This is very true Rebecca, thank you for a smile moment on a damp and dreary morning.

I think we should all live our lives to the full and enjoy every day. There are medical advan…[Read more]

“so who’s to say you won’t grow old and penniless because you spent all your pension money having holidays and enjoying life thinking you wouldn’t need it for later?”</span>

This is very true Rebecca, thank you for a smile moment on a damp and dreary morning.

I think we should all live our lives to the full and enjoy every day. There are medic…[Read more]

<span style=”font-family: Arial, Oswald, ‘Helvetica Neue’, Helvetica, Helvetica, Arial, sans-serif; line-height: 19.5px; background-color: #fbfbfb;”>”so who’s to say you won’t grow old and penniless because you spent all your pension money having holidays and enjoying life thinking you wouldn’t need it for later?”</span>

This is very true Rebec…[Read more]

It’s happened again my posts been cut of in it’s prime!

Now then how did it go.

Do you have stem cells stored for a second SCT? I think if it was me I’d delay the SCT whilst I was doing and feeling ok especially in light of the experience you had with the first SCT though I guess no two SCTs are the same. Quality of life for me is the most…[Read more]

Hi Helen.

I just reread my last post and it seems to of been cut short.

I’m tired a lot of the time but I put that down to my sleepless nights due to the Dex effects. It’s a worry I have wondering how long my bone marrow can last with all the battering it’s taken with over three years of drugs. Though Pomalidomide seems to be a bit more gentle…[Read more]

Hi Vicki & Colin.

it seems a lot of people are having second SCT’s or getting ready for a second SCT at the moment. I know what you mean about it being a dilemma now with talk of a possible SCT for me I’m not even sure I would go for it. My reason being that it takes so long to get over a SCT that I wouldn’t want to spoil the quality of life I…[Read more]

Hi Matt

When Frank applied for policy, he had to answer loads of questions. One they kept harping about was “are you on very strong pain killers”. He asked what they called strong. They never had an answer for that and as Frank was only taking paracetamol – they accepted that. He got the yearly policy and when they sent the renewal policy it had…[Read more]

Hi Matt

My husband has been in remission for over 2 years. We love cruising and we got the best deal from All Clear – a yearly policy. When we asked about cruising in the Caribbean – I can’t remember what it cost but I know it was astronomical – so we stay with in Europe. Hope someone comes along and can give you more info

Best wishes
Jean

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 Rosie,

I don’t come on the site too often at the moment and it was my wife that told me about your post. I’m really sorry about your loss and that you have a young family. I am sure there will be help and support for you and I think we all tend to find a way of managing / coping even though it is painful. Anyway, our thoughts are with you,…[Read more]

Hi Dawn, I too attend the Leicester Royal, unlike Jeffrey I am on the myeloma XI drugs trial via the NHS. There is a special clinic for those on drugs trials, financed I think by a charity called Hope for Cancer ( Leicester based I believe ) I see the same consultants as Jeffrey, and like him I also have my favourites! Don’t think I ever seen a…[Read more]

Hi Angela and Graham

Move over Sir Bob. I really enjoyed that. Real good feel video. All looked if they were enjoying it.

Great well done
Jean x

P.s the drummer was brilliant

Hi All,

I too felt more settled after reading Mike’s post, particularly after appt this week when my status was described as “relatively stable”.

Just to note how difficult people find it before their appts, my husband and I (along with the rest of my family) are so anxious and twitchy and frightened. It is such a relief to be told , see you…[Read more]

Hi James.

Your right I got it wrong apparently different patients show their myeloma in different readings. Some can only have their myeloma measured by bone marrow biopsy. I do know they don’t take any reading in isolation. Some have high paraprotein levels and aren’t treated immediately others have low paraprotein levels and get treated…[Read more]