Hi San

So sorry about your mum,I do not know which is easier knowing it’s going to happen or not.

I hope you and your family find some peace at this sad time,no more pain for your mum,I also hope you were able to spend some time with your mum doing normal things with out the myeloma being up most in your thoughts. Eve

I’m quite relieved to find this post as my husband has been hiccuping madly from 24 hours after his second dose of chemo (Velcade, cyclophosphamide and prednisolone). It woke us both up a few times in the night. In his case, though, it’s not just irritating, it hurts because of the jolting to the fracture in his spine.  He has chemo clinic on…[Read more]

San I’m so sorry to read of the passing of your beloved mum. My thoughts and prayers are with you and your family

Love Jean x

Hi Tom

Good luck on Monday and with such a positive attitude as yours, I hope the treatment goes well and you get a hell of a lot more than 4 years. Love to you and Elaine

Love Jean x

Dear San
I’m so sorry to read about your mums death today. I know you will miss her lots and lots. She sounded like a real lady! And I hope that Christmas and new year went peacefully for you all.
Much love
Helen

Dear David
It’s good to hear you are still getting out and about… Even if it’s only in the UK. I’m going to tackle the insurance company tomorrow to see how I’m fixed since relapse/remission……. I have my fingers firmly crossed and will not be a happy bunny if they say ‘no’
Love Helen

Hi again
I also can’t edit anything so I can’t inform you that it’s an iPad I’m using, in case you’d forgotten!;)
Helen

Hi Stuart
I’m still getting ‘participant’ ….. How can you delete the site when there is no ctrl or f5?
Helen

Thanks Nick!

Angela – hope you have a lovely weekend that will keep you going for  the weeks ahead. Time spent with friends and family is precious and time well spent. Hope you have lots of laughs.

Sarah

Well – M is home at last. Now I have to get to grips with things on a practical level, but I think we can relax a bit more in our own home, even though he did have excellent treatment in hospital and his pain is now under control. The big bottle of handwash is by the front door for anyone who visits, and we are now equipped with raised loo seats,…[Read more]

Hi Vikki
Good to hear you and Colin are going to go away, can’t do enough holidaying in my opinion, I must go and book one since we are talking about them!
Love Helen

Dear Carol
As said by the others take your own or get your own brought in, I sucked ice cubes I’d made from fruit juices I like and sucked them for 10 minutes before, during the infusion and 10 minutes after. I also had lots of mouth washes.
I had no mouth ulcers, in fact my mouth was the only bit of me that seemed to escape unscathed from the…[Read more]

Hi Tom
Good luck with your new treatment, I’m out the other side of it now and am beginning to feel more like myself, mind its powerful stuff! Insidious too, the PN sneaks up on you in a weird way… You almost doubt there is anything happening and you describe these vague feelings to the docs and all of a sudden you are on half the dose and…[Read more]

Carol when Frank started melphalan he also had a supply of ice lollies. After cells returned they supplied a mouth wash and he was for ever using it – he had no problems with his mouth

Good luck
Jean

Hi Chris

Sorry you had to join us, but welcome. June has given you good advice. My husband smouldered for 6 years. He went every month to consultant. Frank only thought of MM when his appointment came round. I think I worried about it more than he did. I hope you smoulder for Many many years. Ted will probably come along soon, he has been…[Read more]

Hi Jeff

Well age and not having SCT explains it.

I also think,we do not take every thing in when it’s not good news,I am sure the consultant will explain if you ask,or see the myeloma nurse who is in charge of the trials,they are usually better at explaining it,in none medical terms.

People can be smouldering under 10 and it’s only when other…[Read more]

Hi David and Andy

Good to see you are still around and doing as well as can be! Are the Myeloma masses outside the bones David,you do not say???,
Glad the PP are right down,how are your bloods with the Revilimid ????.

Have to admit David I am not keen on the new format,my I Pad,makes it difficult to log in,and cannot get the site to remember me…[Read more]

Hey Tom vodka on you. No make that gin

Xx

Hi Chris

You are lucky in many ways,because of routine blood test they have caught you early plus SMM,so that’s all good news.

There is no reason why you cannot live a reasonable normal life,I would advice you to ask to join the under 50 as you will find people of your own age!!

What I will recommend is you educate yourself concerning…[Read more]

Hi Liz

I am not advocating going to Spain WITHOUT insurance BUT we have been to Costa del Sol many times and we did not have insurance. I remember Gills husband Stephen, when they went to France, saying that he was not going to break out in a severe case of Myeloma. Kev, like Frank knows his own body. We had been looking into going to Tenerife,…[Read more]