Week 1: So far, so good, so what?

The day before my first radiotherapy appointment, I had to go to Bracknell to be given my first weeks worth of Chemo tablets. They also gave me the instructions on how to use them. Either I completely misunderstood what I was told, or the instructions were lousy. The next day at Reading I got a bollocking from the first Radiographer I met for taking the tablet at the wrong time. It marked the beginning of what proved to be a horrible first day for a treatment that I didn’t want to do in the first place. Earlier, when I first got up and took my first dose of chemo, I felt bullish. I thought to myself ‘fuck it! I don’t get side effects from tablets and this is going to be easy!’ and set off to the radiotherapy with a kind of ‘give me your best shot’ sort of attitude. Another about 2 hours of waiting, fucking around with the equipment whilst they did the initial set-up and then the actual radiation dosing, I literally staggered out, almost a broken man. Turns out their ‘best shot’ was quite a bit harder than I expected. As the week developed though and I got used to the regime, I realised that nearly all the impact I had felt on the first day had been emotional rather than real physical hardship. The anti-sickness tablets controlled the nausea, the chemo tablets weren’t too hard to tolerate, the antibiotics went down fine, the anti-seizure tablets continued to work and the radiotherapy, although unpleasant, wasn’t having much of an impact on me. I felt a little bit more tired than normal, but I mainly attributed that to what was the first daily routine I had adopted since I stopped working when the initial seizure happened. It did feel like much like going to work. I got up at the same time everyday, completed a series of difficult tasks and then went home to rest. By the end of the first week, I felt quietly pleased and thought that if the rest of the treatment went as well, I’d coast through it. Even if it didn’t, at least I’d got a week down with no problems. Only another 5 weeks to go. The layout of the fun filled ‘Berkshire Cancer Centre’ (surely they could have come up with a better name than that?) is carved into 3 main areas - in the entrance there is a sort of lobby with a little cafe and some comfy chairs where people and sit and wait. The second area is a consulting section where you can be seen by a consultant / nurse and treatments, diagnosis and prognosis is discussed. This is where I went for the initial discussion about the treatment with Dr. D a couple of weeks before the first treatment. It’s an unremarkable area other than there is a tangible sense of the gravity of the problems the people waiting there are having to face. When I came to meet Dr. D for the first time, whilst I was waiting a couple emerged from the room I was called into, obviously having just had a turn with her. I guessed that they were in their 40’s like me. The guy was an absolutely massive bloke, taller and much bigger framed than me. He looked like a biker and seemed as hard as nails. I could tell he was in quite a bit of physical pain but he still held himself strongly upright. His face was calm but ashen. His wife / girlfriend was very petite and he dwarfed her. She had a sort of ‘gangsters moll’ type of a look but she was very striking. They made a handsome couple actually. She had a very brave face and was gripping him tightly, but she was openly weeping with a kind of sadness that I saw several people look away from - out of respect rather than lack of willingness to acknowledge. I can only imagine what news / discussion they had just endured together in that room. That type of shit is happening there daily. Places like these bring together and expose the true extent of human suffering that is going on through cancer, it is all around us. Whilst to all of us, the experience is singular, intense, focused and individual, the truth is that we are nothing special or unique in this condition. The extent that you see when you ‘join the gang’ is staggering. I really does make me sad and I’ve often wished since this all started that I’d paid more attention to cancer charities than I did. If I get any time back from this treatment then I’m doing to do something to acknowledge that. The 3rd section of the centre is the radiotherapy wing where there are several rooms full of the equipment required to perform the procedures. I still haven’t worked out how many there are; I think there are 5 rooms but only 3 or 4 are in use. The numbering system doesn’t seem to make logical sense, but I can immediately understand that did probably did once and various reasons over time have led to something that out of context doesn’t mean anything. I decided when I started getting my lifts to the centre daily that I would ask my ‘drivers’ to wait in the lobby and deal with the radiotherapy area on my own. There are a lot of very sick people back there and I particularly didn’t want to expose my family and friends to that environment, or risk unnecessary exposure to the patients to ‘outsiders’ who may inadvertently make them ill. Also, selfishly, I found that going through the procedure feels quite private and I quickly realised I needed a bit of space on my own to go in and have the process done. Most days I’m in and out very quickly, less than 30 minutes. On the odd day there is a delay for various reasons, but generally it seems pretty well run. On my third day, I was waiting for a little longer as an elderly lady on a hospital bed was wheeled in for some sort of radiotherapy treatment in the room I was scheduled to go in. She looked very gravely ill, on oxygen and other lines etc. She was left against the wall near me for a few minutes whilst they prepared the room for her, so I had full few and I could see her slipping in and out of consciousness as she waited. I wanted to acknowledge her and say ‘hello’, but very cowardly I didn’t. It’s is something that I really regret. The fact was that she frightened me and I was keeping about whether I was going to end up like that and what that might feel like. I thought about it a lot afterwards and it’s not a mistake that I will make again - I’ve since made a point of acknowledging everyone I see when I’m in there, no matter how well or ill they seem. I’ve noticed a lot of other patients doing the same. These small gestures create a kind of comradeship between each other which to me says “We’re here. We exist and we’re still alive”. So I finished the first week, intact for now and ready for the second. What was going to happen beyond that, I didn’t know. Nobody does. Go here to the start of the journey. Go here for next blog entry. Go here to view previous blog entry.

 
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