Last year I read a novel called The Rosie Project. It's a sweet story, about an autistic man looking for a girlfriend. The title stuck with me, for obvious reasons. Today I feel like it's an apt way to describe my life at the moment. Life is no longer a series of events. It is one big project - fighting Genghis.
While I was was on chemo, the project seemed entirely manageable. It was broken down into small chunks. All I had to do was get through the current cycle, then the next scan. But as of this morning I am officially on a chemo break. Despite a blood transfusion last week and a platelet transfusion on Tuesday, my platelet level is still very low and chemo was therefore a no-go today. We had a strategy meeting with my wonderful oncologist and agreed that now is the time to take a break from chemo and let my bone marrow recover. I am going to have the lump taken out of my breast and when the chemo is out of my system I am going to have SIRT on my liver. I'm also starting on tamoxifen to try to ensure that the liver lodgers don't have the chance to grow while I am waiting for SIRT.
Stopping chemo for the moment is clearly the right thing for my body but the news has not been great for my mental state. Instead of facing small chunks of treatment, I am now feel like I am looking the illness as a whole straight in the face. On chemo, it felt like I was walking down a path with benches placed at regular intervals. My job was to get from bench to bench. Now I feel like that path has become a wide road. The benches have disappeared and the road stretches ahead, with no obvious end in sight. Not only that, but my crutch has been removed. Vile as it was, the chemo was working and that gave me comfort. I don't know whether tamoxifen or SIRT will work. So I feel uncertain about the next stage of my journey - and very exposed.
On the plus side, I do hope that the chemo break will put the Rosie back into the Rosie Project. I want to be me again, not this shell of a person with dark rings around her eyes, with little energy, with a dry mouth, who can't drink a glass of wine or a hot cup of tea. I want to look in the mirror and recognise myself again. I want to be able to run around after the kids at the weekend. I want to be able to eat spicy food again. I want to have the strength to make dinner in the evenings - I did this last night for the first time in weeks and it felt so very good to produce a meal, to give Elliot a rest from it, to eat something that I had made, to wait on someone else rather than being waited on.
Making the food made me realise once again that being a patient is quite a selfish state. You spend a long time not thinking about anyone else until you start to forget that you have to think about other people and when you then do think about other people, it's quite a challenge. So as part of the Rosie Project, while I am on this chemo break, I'm challenging myself to stop being the patient unless it's absolutely necessary. I'm putting on my big girl pants and pulling them up under my chin. We are all stations go on the Rosie Project. Watch out Genghis!