[SalParticipant]

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 important it is that I stay healthy. I’m seeing her on Monday so will certainly tell her about the sleeping. Might just get a pack of Nytol in the meantime.

M has still not started his chemo. He’s been told he’ll be in hospital until at least the beginning of next week, which at least gIves me a bit more information. The  regional myeloma MDT is on Thursday and his case is being discussed then, so I think chemo will now be finalised after that.

Hoping your week has started well.

Sarah

[SalParticipant]

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. His temperature  was ok this afternoon but his consultant was taking the opportunity to consult with a colleague in another hospital before he finalises the chemo plans.

Fortunately I can work from home quite a bit at the moment and I’ve got lots of holiday to use up from last year, so i can be very flexible for now. My boss understands the situation and knows that work can’t be my priority right now.

We met one of the haematology clinical nurse specialists today and she said that once the chemo drugs are sorted out, she will make sure I have lots of information.

My main problem at the moment is that I’m finding it difficult to sleep, and that’s really unusual for me. However, these are unusual times, and this will pass.

Tomorrow is another day and there will always be some good things in it!

Sarah

[SalParticipant]

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 in hospital 3 times since then, and backwards and forwards to all sorts of appointments. We knew from the beginning that it could develop into myeloma, but you always hope that it won’t happen, especially as he is only 44.

I really hope you can get the counselling sorted out soon.  Do ask me if you have any questions about mindfulness. I’m not an expert by any means, but it really helped me at a time when I was finding things difficult.

Sarah

[SalParticipant]

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 that my local health service has a self-referral system for all sorts of courses and I was able to go on a free 6-session course. There is quite a lot of information and some free podcast are available on websites. http://Www.oxfordmindfulness.org is particularly good as it has a research base at Oxford University.

Mindfulness has its roots in Buddhism and some Buddhist centres offer open courses. You may or may not wish to include a religious/spiritual dimension, but you need to be aware that different courses will include or exclude this.

It might just be worth looking into as it would offer you something long-term, and could work well alongside counselling. It’s also something where you feel you can regain some control and that can be helpful in itself.

Best wishes,

Sarah

[SalParticipant]

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 question at the moment – and I won’t rush into making a decision – is how/whether I can sustain full-time work, which involves quite a bit of travel. We obviously need to have money coming in.

That’s not really today’s problem, though. It should be the first chemo day today. M had a high temperature yesterday, but I wonder if it’s linked with his first zometa infusion, which he received on Saturday. He was going to ask. At least he is still in hospital, so things can be sorted out more easily.

thanks again,

Sarah

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