Wednesday 18th December
Yesterday we left Exeter and drove to Plymouth where we spent about four hours Christmas shopping. I took it slow, stopping for coffee breaks and lunch, but by the end of the day, my foot, ankle, calf, knee and thigh were incredibly swollen. Up until now, my only exercise has been bursts of about twenty minutes, going from the house, to the car, to the local supermarket, and then sitting in a coffee shop.
So on Wednesday I didn’t get out of bed. The swelling of my left limb was quite scary, and I didn’t want to risk any further problems. I lay there, with my leg elevated, and dozed for most of the day.
The first phone call I received was from one of the Macmillan nurses asking how I was doing, and whether I had made a decision on the Truro trial for Brim8 (vemurafenib). I apologetically declined, stating the very frequent monitoring, increased side effects, and the fact that all I had read made the Exeter trial, Combi-Ad, the more preferable. She was very understanding, and thought that would be my decision anyway. She also made an appointment for me to see the other Macmillan nurse after Christmas.
The second phone call I took was from the trials nurse in Truro; she wanted to know my decision. I felt a little bad declining their offer, but she too was most understanding.
Finally, I was called by the lymphoedema nurse at the local hospital in Hayle. We organised an appointment for later in January, where she would show me lymphatic drainage massage to control the swelling of my leg, and when she would take a lot of measurements of my leg, ready to have garments fitted. ‘Garments’??? Oh, those wonderful support stockings that guard against lymphoedema.
Well, anything that helps me return to some semblance of normality, I suppose I will have to accept. Trials, tests, monitoring, travelling, even support hose ~ if I value my life, I will do as the experts direct me.