Myeloma diagnosis

Hi JamMan,

I am so sorry to read your news, I know how you might be reeling right now as I remember how shocking the initial diagnosis was. I was 36 on diagnosis (42 now) and my kids are a similar age to yours. The first thing I will say is that there is absolutely no reason why you won’t be there for them. Hearing the word “incurable” can be very shocking but I don’t think it has the same meaning as it can in other cancers. The disease is very treatable, there is no reason why you can’t live 10, 20, 30+ years down the line - it is beginning to be seen much more like a chronic illness now - my consultant said to me on diagnosis that it was his job to keep me alive long enough that I die of something else - I initially found that quite odd, but in the long run, I think it is quite apt.

In terms of questions, I would keep them few for now as your brain will likely not be able to cope with too much information. I would stick to the basics such as what treatment are they proposing to put you on and whether there is anything specific that they want you to start doing or watch out for. They will likely want to do a bone marrow biopsy to confirm the diagnosis.

The last piece of advice I would have for now is to stay off Google. A lot of information out there is very out of date and I nearly unnecessarily scared myself to death - I would stick to reputable sites like Myeloma UK and this one.

I hope the above is useful for now and I am sending all my best wishes to you at this very difficult time.

Greg

Hi Greg 

Thank you so much, you have really reassured me. I can't tell you how grateful I am for you replying to me.

I think you are right that for now I will let it sink in and take it from there. Also very good advice to stay away from google.

Thank you. You really have helped. 

Hi I remember how scary it is and there is alot to take in. I have been on treatment for 13 months now, each case is different. When you see oncology you will be given a number for the care nurse team. Any questions speak with them as can be easier than the consultant. I write everything down whilst on treatment and any concerns I ring definately puts my mind at rest.

Debbie 

Hi

 I am female, with 3 kids aged 13,11 & 9. I was diagnosed with multiple myeloma yesterday. What an overwhelming shock to us all. I hope you have accessed treatment and are feeling well. Any advice on talking to the kids? I start chemo next week and have been signed off work so there’s no hiding it!  have the yellow kite book from myeloma uk, which is lovely. Any tips?

 With thanks

Hi Slimynose,

I am so incredibly sorry that you have received this news, I remember just how devastating it was so please go easy on yourself over the coming weeks and months, it is going to take some time for your mind to process.

In terms of communicating with the kids, mine were 8, 6 and 2 at the time so a bit younger than yours (they are 15, 13 and 9 now so a lot more similar age). We decided to be honest and tell them I had myeloma and that it was a cancer. The youngest obviously didn’t understand and even the oldest two didn’t really know what that meant so we mainly described me as being poorly but that the doctors had a plan to make me feel better.

I am coming towards 7 years since diagnosis now and am still in remission following SCT, so it is not a topic of conversation that comes up. They know I have been poorly in the past and they know that chances are it will come back at some point, but we found that children tend to stay in the moment, so we focus on the situation at the present.

There are lots of good books out there which will hopefully help give more specific age related guidance, but ultimately you will know your kids best and what is best for them.

I am sending out loads of warm wishes to you, this will be such a horrible and uncertain time for a while to come, but I hope you can find the right way forward for you and your family.

Greg