Stuart closed iPad down and restarted again and there it was. Thanks

Jean

Hi Tina

Sorry to hear that you had such a rough time especially over Christmas and hope that 2014 is a good year for you.
Take care
Love Jean x

Stuart immediately tried to edit above post and no Edit button
Jean

Hi Stuart

My version is same as Liz and Andy and still can’t find edit button

Jean

Hi Stuart
I have the same IPad operating system as Andy and Liz .
I don’t like the new site!
I can’t log in easily…. I have to say I’ve lost my password each time. So I’m not looking or joining in as much as I used to as it is too much bother!
I can’t scroll down easily
I don’t like being a ‘participant'(especially as you have a different…[Read more]

Hi Deb

Have they released any information concerning the padimac trials,because the few people who I know who were on it,it did not work for them!!!!

There is no harm in trying for the new trials if you do not get carfilzomib ,you can pull out of trials,you can also find the price of drugs by going into NHS pricing for drugs.!!

I do think you…[Read more]

Thanks Nick and Maureen,

It really helps to hear about your experiences. Really encouraging to hear that you are managing to work, Nick.

My GP has asked me to make regular appointments with her since M had his first spinal op, as I was the one who ended up with the hospital-acquired infection! She’a really supportive and keeps telling me how…[Read more]

Hi Jade,
I didn’t have an SCT just 4 cycles then the harvest and may do SCT in future – but I wanted to write and share thoughts just as I know what it’s like when you’re trying to plan ahead and figure it all out date-wise. I don’t know if you’ve factored this all in already but timing tends to slip: e.g. sometimes they have to delay a cycle by a…[Read more]

Hi again Megan,

Thanks for sharing your story. You must really have gone through the mill when Phil was diagnosed. So sad to have to give up your dream, but it doesn’t take long for us all to understand where our priorities really lie, does it?

Chemo didn’t start today. M had a high tenperature last night so they have given him IV antibiotics.…[Read more]

Hi again Harmony,

I’m so sorry you had this experience with your colleague. I’m sure she meant well but it was hugely insensitive.

It’s my husband who has just been diagnosed with myeloma, so my experience is and will be rather different from yours. It wasn’t a bolt out of the blue really as he had a plasmacytoma diagnosed in April and has been…[Read more]

Hi Harmony,

i’ve just joined the forum and hope you don’t mind me offering a suggestion. Have you heard of Mindfulness? It is aimed specifically at enabling you to have control over thoughts and to “rein in” those trains of thought that can cause distress. It helps to focus on the here and now rather than the unknown future. I’m really lucky in…[Read more]

Thank you Megan and Eve,

I know I am far from being the only one in this situation, but it helps to have some contact with others. I read up a lot about myeloma when M was first diagnosed with plasmacytoma, as we knew there was a high possibility it could progress to myeloma, but it’s different when the possibility becomes reality.

My big…[Read more]

Hi Sal

Welcome,I think at the beginning it is a big learning curve,your husband will just want to get on with the treatment and I think you would be a help to him if you learn,t all you could about Myeloma plus side effects of the drugs,although it’s your husband who has Myeloma it will effect the whole family,and you will have to be the strong…[Read more]

Hi Andy

I use my iPad and for the life of me I can’t find the Edit button. I’m forever making mistakes. It may be looking me straight in the eye but ………

Hope new treatment goes well

Jean

Hi Christine

Glad that you are in full remission. Frank had SCT in March and is also (thank God) in full remission. Had a PET scan as well and no signs of cancer. Mind you ha has had a cold now XOR about 4 weeks but no temp. I asked his consultant why he was not offered maintenance and she said that it is only offered to,people on trials. We are…[Read more]

Hi Maureen

Glad that Ian is feeling well enough to go out tonight. Hope you both have a fantastic night. I am nipping repund to one of our sons of a couple of hours. Frank is loaded with the cold and insists I go. Hacpve a happy and healthy 2014

Love Jean x

I’m a carer and I know how you are feeling. Frank smouldered for 7 years. I always had this scared feeling in my stomach. I went to a counsellor and it really helped me. I don’t know why it’s taking so long to see one. I went to the Macmillan centre attached to our hospital and talked to someone there and told them exactly how I was feeling. I got…[Read more]

Hi Maureen

I echo your sentiment. Hope all have a great Christmas and healthy new year and pray that some major break through happens in 2014

,au teen hope you are good and that Ian is improving

Love Jean x