Running parallel with that internal exploration was the practical approach to events. That included occasional meetings with my two MPN buddies both living near me. From the beginning we’ve adopted a no holds barred type of conversation. Each of us free to bring up whatever might be on our minds that couldn’t be aired elsewhere. Another safe space.
Our first conversation had included the problems families and friends faced in dealing with our diagnoses and treatment. These ranged from complete support to complete ignoring of events. Knowing that I wasn’t the only one dealing with these issues helped enormously.
At the self help group where we met, the specialist nurse had mentioned a forum she was trying to organise in Nottingham to explore diagnoses, treatments and forecasts of research. That eventually took place in October and I take my hat off to her for the hard work she and the woman running MPN Voice had put in to make it happen.
She said she was amazed how many turned up. Over 100 from across the East Midlands. I have to say as a sidebar, that if I had to be diagnosed with this cancer, other than living in London, I’m probably in the best place. The expertise of the team at the City Hospital is first rate and for me local. Others at the event travelled miles for their care.
We heard talks from three of the consultants and a specialist pharmacist. Plus two patient talks including a man who'd had a bone marrow transplant. Topics ranged from diagnoses, treatment to ongoing research trials. Again if I had to have this cancer, compared to fifteen years ago, now is a good time. The sessions rounded off with separate groups for each of the main cancers, ET, PV and MyeloFibrosis plus one for family or friends who’d come.
My group session headed by one of the consultants offered a chance to air some concerns which included how people had been told, how they reacted to the drugs and how families and friends coped. One woman shared how she’d had to let her son see her at the worst of her exhaustion. Before that he’d been equating her condition with his own healthy tiredness after sport or a day’s work.
I did have a client as a holistic therapist suffering from ME. At that point I could see from the outside what problems it caused. Now I understood better from the inside.