When I was first diagnosed, I heard about Info Days which Myeloma UK offer at venues around the UK to provide patients, family, friends and other supporters with information about the disease, treatment and forthcoming news for people with the condition.
It seemed like it might be a good idea and even though it was £15 a head (including lunch and refreshments), I thought I’d check it out. It seemed like a long way off at the time. I booked a place for myself and a friend and suddenly the day arrived… Today!
The venue is only 5 minutes away from where I live and had I got up in time, we might have cycled there, but in typical Jet manner, I was late getting up so we drove.
It was well organised and a friendly welcome offered by Myeloma UK staff. There were presentations by the consultants and the specialist nurses, whom I’ve come to know a little already – well delivered, informative, with space for questions.
We also heard personal experiences from two patients who are living with Myeloma, which on one hand was interesting, but as I have come to understand, every Myeloma patient has a different experience – it is a very individual disease, with so many potentially different aspects that hearing one person’s experience may or may not be helpful with one’s own.
One of the consultants mentioned early on that it would not be depressing, but aim to be an upbeat day. By mid-morning I was feeling depressed. I have it in my head that I have a possible life expectancy of 10-15 years, which kinda feels ok – bearable – a reasonable outcome. I think I’ve added on an additional 5 years to the 10 years I was initially told, in the reliable hope of ongoing medical advances. Some of the literature speaks of a 3-5 year life expectancy! Giving a bit more thought to the stem cell transplant, the gradually shortening periods of remission and ultimately pain and death didn’t do much for my mood. 😦
My main feeling was that all the information I need, I will get if/when I ask, if/when I need and in my own consultation, so I can ask very specific, personalised questions. I realised that I was not hearing anything especially new or useful to me at this time.
Again, I felt surrounded by people I didn’t feel I had much in common with – sharing a disease is really NOT enough for me! The sun was shining, the lunch food/service left a lot to be desired… not to mention the very poor attitude of the hotel serving staff and I was feeling tired, having been awake since 4am (last day on Dexamethasone – steroids!)
With an hour to go before the afternoon session recommenced and a sense of slow creeping death by boredom coming upon us, I had a quick consultation with my wise friend, who said “If this was your last day, is this where you’d want to be spending it?” Big resounding NO!!!!!! So we skipped off into the Saturday sunshine and spent the afternoon in the garden. 🙂
I think the Myeloma UK team do a great job in providing these sessions and clearly they are very useful for some people… just not quite the right thing for me at this time. Whereas, being in the sunshine and enjoying my garden was EXACTLY the right thing for me today!