Hello there. I have been on a holiday. Not an actual holiday you understand, but a holiday where I have tried my hardest not to think about My Myeloma or my setback. Of course, I have failed miserably in both. Since The Bad Day, all I have done is think about My Myeloma and my setback.
Last Friday, I said to myself, after Housemate had said it to me, that I had the weekend to wallow. In reality, I needed a week. I needed the week to get my head around how horrible this all is. Plus, I needed to get my appointment with the Medically Trained People out the way. Waiting a week for that was torture. Waiting breeds paranoia and I can honestly say that I have been at my most paranoid this week. Not paranoid about whether people like me, that is a given at the moment, no, paranoid about My Life and My Myeloma and how long I have left. Snippets of conversations I had at the last appointment on The Bad Day and a conversation I had on the telephone went over and over my head. And over some more. Questioning what ‘if’ meant and why I was told not to get ahead of myself, and why I was advised to bring a family member. What are they not telling me? What do they talk about in their little weekly meetings? Will I see the end of my twenties?
I spent seven days getting out of bed and I had no idea why. The Support Network were divine. If I was intent on trying not to think about it, they helped. They kept me busy, with food, music and talking. I readily admit that whilst I was physically there, I wasn’t actually there. I was trapped in my thoughts fiddling with my watch or whatever jewellery within my reach. I had conversations and made conversation, but my internal monologue just said ‘cancer, myeloma, fuck off and death’ on repeat. Try as I might, everything else was white noise. I was the best company to be sure. On Sunday night I woke myself up screaming ‘Fuck Off’. My mental state has been sound. That said, it was important for me to get out of bed and do those things. The alternative would have been far worse.
I went into work on Tuesday and that was difficult, but it needed to be done. It was like ripping off yet another plaster. All those sympathetic faces and lost words embodied everything, I imagine, everybody else was thinking. It was just hard to see it in such a concentrated way. I have been practising my sympathetic face since then, bit it just looks like I am slightly constipated, I know this because during PADIMAC, I took photos.
Overall, I think I handled it well. By it, I mean the complete devastation of my year’s plans. I still do not want to talk on the phone. I do not want to be encouraged to talk about it. I know as much as you and that is not a lot. It is unfortunate then, that whilst I do not want to talk about it, it is all I can think about. I am sure it puts my friends at ease in my presence.
Anyway, that is all water under the bridge for yesterday, I met with some Medically Trained People for my appointment. As I had spent all week imagining the worst, it was fine. I met a new Doctor who I was a fan of. Sure, he was a Personal Space Invader, but I have cancer so people are constantly getting all up in my grill and I am used to it. He also displayed a lot of compassion, which I am always a fan of. I need to feel like people care. Over familiarity really works for me, unless you are a locum GP accusing me of being an obese recreational drug using hypochondriac, in which case, then it is not okay. Still.
In short, I am starting a new treatment. Well, as I write this, I have started a new treatment cycle. It is called VTD. That is short for Velcade, Thalidomide and Dexamethasone. I have had two of the three drugs before. As for all the worry about my future, I’ll stick to this for now. The transplant is still on the cards if My Myeloma behaves. Please let it behave.
I am out of bed, I am smiling and I am ready to go. It has to work this time, right?
EJB x
