A few days ago on a bright and breezy day I was pegging out washing on the line when I saw from behind one of my T shirts the most beautiful peacock butterfly land on the mauve flower head of a buddleia bush. It was struggling to stay on the flower because of the gusts of wind blowing it around and it was flapping its wings to try and stabilise itself. I ran back into the house to get my camera and hoped it would still be there when I got back. It was and I managed to take a couple of shots of it. It was clinging on resolutely, occasionally fluttering off unable to stay on but kept coming back to land. The fragility of the butterfly’s situation reminded me of my own recently as I have been desperately holding on waiting for treatment to start, both emotionally and physically.
Since my post the Myeloma Trilogy, I have completed my first cycle of treatment. The Onyx trial finally opened on 9 August, I was the first patient and my trial tests really were whisked off to a lab in Paris (which spookily was my fantasy involving Lizbeth Salander in the Myeloma Trilogy post) and I was so hoping to be randomised to the new drug, Carfilzomib but there was only a 50/50 chance. Just my luck I got the old drug, Velcade, which I could have started off trial two months ago off trial before I starting feeling the ill effects of having active myeloma. I was devastated and inconsolable, the poor trial nurse who broke the news to me didn’t know what to say and then had to perform a bone marrow biopsy on me! At this point in time, it wasn’t that I wanted the new drug because I thought it would be a more effective treatment, it was because I had waited all this time for the trial to open to the detriment of my health when I could have started the old drug off trial before that happened.
Oh well, I have become resigned to it now like many other things I have become resigned to over the course of my journey with Myeloma, the loss of control is probably one of the hardest issues to deal with. The second cycle starts tomorrow and I hope that after two cycles there will be a significant reduction in my kappa light chains. I have my treatment schedule now but plans seem impossible as it is unpredictable how I am going to feel or what I can do on a day to day basis. A holiday in Italy has been cancelled as well as a tennis holiday in Greece at the end of this month so I am feeling rather sorry for myself. My self pity has been deepened by the excrutiating shoulder and arm pain I have at the moment caused by a trapped nerve in my neck which may or may not be related to myeloma or the treatment. I will be having an MRI scan to see what is going on soon I hope.
However I have managed to do some more enjoyable things in between hospital visits and prior to my trapped nerve such as canoeing down the river wye with some friends from Kerne Bridge to Symonds Yat in a 3 person kayak which was lovely. Oh and did I mention that I managed to do the bike section in the Salford Triathlon two weeks ago?? It was hard going but I took it easy and let go of my natural competitive inclinations and “allowed” everyone else to overtake me. My team mates did brilliantly too and at the end I felt overwhelming relief, firstly because I had been able to do it and secondly because it was all over now and I didn’t have to stress about it anymore. Action photos below, the small one of me coming off the bridge I really like but I cant improve on the quality or size without buying it as it was taken by a commercial photographer. I certainly look the part, who would know that I was week one into chemotherapy treatment and that earlier that morning I had struggled to get up the stairs to the registration area for the triathlon due to my shortness of breath!