Time is passing by too quickly again. It’s somewhat a good thing considering I’m in the first week of the chemotherapy cycle, and always wish for this time to dissipate so I can enjoy the ‘recovery’ week. Of course, the recovery week isn’t really that. Week 2 is often where my mouth ulcers start playing up. I looked at my tongue in the mirror yesterday and noticed that I have some kind of scarring all down the side of my tongue. I read a bit about it and apparently your mouth recovers quickly so I’m hoping it’ll be back to normal after a few weeks sans chemo. The cycle is plagued by lethargy, though – my number one enemy. There is nothing more frustrating than having big plans for your day, only to lay down and not get back up for hours. It happened Tuesday, it happened Wednesday, and it nearly happened yesterday. I managed to finesse it on Thursday. Just.
I was laying on the sofa with the dogs and I was fast asleep, unbeknown to me. It wasn’t a planned sleep. It was one of the chemotherapy surprise sleeps where you wake up and have to recalibrate for a few minutes, figuring out which world is the dream and which is reality. The doorbell went and the usual scurry ensued – Dexter, my mum’s dog, suddenly bounced up and started barking to high heaven, surveying the house and being as obnoxiously loud as possible. He has obnoxious down to a tee – last night he brought in a plant pot from the garden, shook its contents all over the lounge floor and then pulled the plastic pot apart, just to make sure it really annoyed whoever was lucky enough to discover it later. Anna found it and she was very annoyed. Mission accomplished, Dexter.
Through the haze, I heard my mum greet someone at the door. The voice was that of my friend Finch – he had come to collect an item of clothing he had left here earlier in the week. He popped his head around the door just before he left. I’m not really sure what we said to each other, or if I said anything at all. Whatever happened, I wasn’t really a part of it. I just remember him smiling at me and saying bye. That triggered something in my brain. All of a sudden, I was determined to not let this be another throwaway day. I didn’t need the sympathetic eyes of an onlooker making me feel broken, like those looking into the enclosure at a zoo.
After another ten minutes or so of questioning how committed I really was to moving from the sofa, I finally got up. I went straight upstairs and got my running stuff on. Enough is enough. When they weighed me before treatment at the hospital on Saturday, my weight had increased to 76.7kg. That should be something to celebrate, but I actually think it is starting to get too high. It is much less worrying than the 63kg I recorded last November. I still feel a pressure to keep my body as healthy as I can under the circumstances, though. The last month has been laced with inactivity and illness; I really haven’t done a good job of keeping myself very active. Even walking the dog has been a bridge too far most days. I do tend to eat quite well, so at least I have that on my side. Apart from the occasional croissant… I had three in one day whilst I was in London last week. You can’t get nice croissants near my parent’s house in Cheshire so I thought I’d overindulge whilst I had the chance. But other than subsiding on croissants alone for three days, I have an alright diet.
I stood outside the house in my shorts, long sleeve shirt and gloves and braced as I started my running watch. It was always going to be a crappy run and I knew it. The temperature was also quite warm, about 14 degrees celsius, but my hands and feet just felt freezing. I had to wear extra thick socks to try and get some feeling in the end of my toes, but it didn’t really work. For the duration of the run, I kept trying to figure out if I could feel the end of them or not. They’ve been tingling for about three weeks now. I told the nurses and they said that it is still permissible to continue with treatment, so long as it isn’t stopping me from walking. The risk is that the chemotherapy permanently damages the nerve endings, something which the medical team try and avoid. The alternative is to lower the chemotherapy dosage, but it seems pretty pointless to lower the amount of a drug to save your nerve endings if it may make those drugs less likely to save your life. Here I was successfully running, so balancing didn’t seem to be a problem. It’s not a problem until it is, though, and when it is a problem, it likely ends with my face on a curb and legs extended to the sky like a totem pole. Not worth thinking about, just keep running. I got some funny looks because of the gloves but I’m way past caring about funny looks.
I just about managed to finish the 5km. It took a lot more walking than I’m used to, but that’s Ok. My heart rate kept sitting at 190bpm so I figured the least I could do was walk in intervals. As I got back into the house, I retreated back to the sofa and had a well-earnt nap. I did feel like I’d achieved something, which made me feel better. It made me reflect more on the week thus far.
I’ve felt more paralysed than I am used to this week. I’m not sure if it falls into the category of depression or is just the known side effects of the chemotherapy culminating – the lethargy and tiredness in practice. I’m trying to take more of an active role in critical things going on in my life, such as reaching an agreement on a return to work and applying for the various government grants that I need now that the employer’s statutory sick period is up. It is hard to stay motivated and I’m frequently hitting hurdles. I called to ask for an update on one of the Government grants and they informed me that the next stage is an interview. When I asked them if that would happen soon, they responded that it would likely be the end of June. Despite them backpaying you the money if you get approved, it makes me wonder how people survive in this situation. I’m lucky as I have parents that I can live with, a flat I own in London that I can rent out and an amazing family who are always offering to help me out. I’m sure that others aren’t so lucky. There are just so many things that you don’t want to have to think about in this situation, but you find yourself worrying about them constantly. You actually have more time than ever to ponder things. It can be quite dangerous if you have an active mind. I consider mine quite active, and I am starting to struggle to occupy myself lately.
That is why it is important to stay motivated. It almost doesn’t matter what you are staying motivated for, so long as you are feeling it. The runs help to motivate me. I ended up going out in the afternoon and walking the dogs with my mum too, which also lifted my mood (and earnt me another hour of nap and a bath last night). They sound like little things, but they make a big difference to my energy levels and mood. Those small changes in energy level and mood then give you another 10% worth of effort to put towards something difficult that is on your mind. Yesterday, I made a few more calls and sent a few more emails about the grants and the return to work in the afternoon after getting back from the run. That left me feeling much better last night.
Now, I’m off to Whitby for the weekend to introduce little Lucy to the sea for the first time. No more worrying about any government grants until next week!