4. Supporters

Wear your name on your shirt when running a marathon and the crowd will shout out their support.  For the first few miles you wonder why all those people seem to know you but you don’t recognise them, but by mile 23 when you have used up all your body’s stores of energy, you need the supporters to tell you to keep on going.

It was hard to know how to tell people about multiple myeloma at first.  I’m of a generation who don’t like to talk about cancer.  I’m not the sort to post my emotions on Facebook, so I was wondering about how to tell family and various groups of friends.

Armed with the confidence that my consultant had given me in the treatment plan, my main concern was to not scare people, so I phrased it along the lines of “I’ve got cancer but the prospects look good”.

Generally, I tried to phone and then, perhaps, meet up but some were a long way away so I planned an email for them.

My friends at the running club came back to me in force with loads of messages, along with a card and flowers.

Once I started telling people, a lot came back to tell me they had experience of myeloma or something similar, sometimes giving me the contact details for a friend who I could chat to, and I was further reassured that there is cause for optimism.

There are other places to look.  Myeloma UK, as well as offering loads of information, offer a Peer Buddy service.  It has been great to talk to someone who has been through the same thing before.  Not only can he answer my questions, he can also tell me what to expect, often things that would not have occurred to me.

https://www.myeloma.org.uk/help-and-support/peer-buddy-service/

I found the UK Myeloma Support Group on Facebook who are a very positive group of people who share their experiences and help each other keep their spirits up.

Vitality also offer a set of support services via a company called ONKO.  They have helped with some physiotherapy exercises that are appropriate for my condition and I’m going to look into their dietician service.  My coach, Maria, gets in touch each week to check how I’m getting on.

We went for a coffee at the Macmillan Horizon Centre in Brighton where they welcomed us both.  They offer a range of complementary therapies to help you relax and reduce anxiety, as well as a great cafe.  I’m not sure what I’d like to get involved in yet.  The walking group seems appealing but I’ll wait until I can walk a bit better before starting.  I’d like an activity where I can chat with others as we go along.

I have started this blog to let my friends know how things are going and to give me something to do.  Thanks to my friend Mike, who has been blogging since the beginning of the internet (see Mike’s blog here), for showing me how to get started.