Nick – I know why you got the same food advice. Looked at your profile and saw you mentioned your blog, which I quickly scanned. You’re being treated at the same hospital! Hope that doesn’t sound stalkerish!! At this stage it is helpful for me to find out as much about people’s experiences as possible – there’s something bizarrely reassuring about…[Read more]

Hi and thanks Megan and Maureen,

Isn’t it strange that we’ve been given all this advice about food when you didn’t get any? It’s basically about keeping to “clean foods”, which means avoiding the sorts of things that pregnant women get told not to eat – blue cheese, raw eggs, probiotic yogurt, raw or lightly cooked shellfish. I guess that rules…[Read more]

Well, the chemo started today. It’s now Velcade,  cyclophosphamide & prednisolone. They had to get special permission to use this combination, but it’s because M suffered such a severe reaction to dexamethasone last year that every effort is being made to avoid it. We’re not sure how often he’ll have to go to hospital, as the nurses don’t seem to…[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 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]