09 November 2014 | Gosport, Hants
I wrote this first via another blog site which, not only didn’t appear on my S/V Matilda page, but didn’t appear on my FB page and, as some people have told me that they haven’t seen it and wanted to know how Andy was getting on, I’ve decided to return to Sailblogs. Don’t read on if you’ve already seen it.....
When you start looking into this myeloma business, you find there is a vast quantity of stuff out there to read – newsletters, web sites, forums. There’s one site that just has people’s blogs on which I thought would be really useful. And it is. It’s also depressing and worrying and anxiety-making! You want to read a blog where the treatment was good, the symptoms were few and far between and the outcome was fantastic! And there are some in there but you have to read a lot that don’t fulfil those criteria to find the ones that do. They should put a warning on them before you start to read or have them in different colours, red, amber and green perhaps, then you could decide which ones to go for.
It’s the same with groups. Our lovely Clinical Nurse Specialist, Donna, organised a coffee morning where Myeloma sufferers and their families could meet and chat and exchange information. A good idea of course but I thought it wasn’t probably for us. However, as I’m a nurse too, I wanted to support her so we agreed to go along. Probably about 40 people turned up which was great for Donna. We met a chap who was just off on a cruise in the Med which cheered us up immensely, not because we want to go on a cruise but, as Andy isn’t allowed to fly for at least the next 6 months, it was good to think that he would be able to in the future. However, looking around you could see a few people that weren’t doing too well and you could hear the same questions being asked all around the room. How long have you had it? What treatment regime are you on? What symptoms have you had? We left after a short while and agreed that we won’t go to any of those events again. We know what might happen and we’ll face that if and when it does. In the meantime, we’re going to get on with this treatment and plan for the future. Like my friend Mel said “All the well ones were out enjoying themselves windsurfing or hot air ballooning’.
Probably don’t want to do either of those but we are cruisers, albeit on land at the moment, so we’ll see you again somewhere beautiful,