First Cycle Update

Sunset view from my apartment ;)

I realise I haven’t updated this page for a while, so here’s the run down on how things are going mid way through the first cycle.

In summary, pretty well. I am extremely grateful to have had limited stomach issues and no nausea at all, which is a bit of a miracle considering the range of drugs I’ve had. I will put it down to having a much stronger stomach than previously thought, and the anti-sickness drugs being very effective. Since leaving hospital and the steroids wearing off, the main side effects I’ve had are fatigue, dizziness and general ‘brainfog’. The fatigue is a type I haven’t really experienced before – it’s both physical and mental. The physical side is best compared to a bad hangover, when you wake up and just have no energy to even do anything. It can come out of no where and just leave you feeling drained, and then lift again quite quickly. It’s resulting in a bit of daytime resting and just taking things easier throughout the day. The mental aspect is also maybe hangover like - its like my drive has been taken away. You wake up in the morning and don’t have the motivation to do even simple tasks, even through I have the reserves. It has meant that I’ve done a lot less reading than planned and not even that much netflix-ing, and a lot more general moping around, eating cereal, finding cold objects to put my head against and flicking through crap on Facebook and Reddit on my phone. It’s like I’ve reverted to being a first year uni student again.

The dizziness I’m pretty sure is linked to the mitotane pill so unfortunately, I don’t think is going to go anywhere, unless the daily dose of 9 pills gets reduced. I’ve experienced dizziness to some degree for the past few years although it is more pronounced. Before it was comparable to stepping off a boat and having things a bit unsteady, whereas now, as well as generally having that feeling, I go through phases where its more like I’ve stepped off a waltzer. It is fatiguing in itself and really not ideal but I’m not sure if there is much to counter it so I just try and ignore it as much as possible and accept that walking down the street can feel like I’m walking on the moon.

The ‘brainfog’ is a weird one. I look back at the first week of chemo and realise I actually had a very poor memory of it. It has all kind of blurred into one long event. My memory is slightly worse, my concentration is off and sometimes in conversations I feel like I’m rambling a bit more than usual. It is probably comparable to having been awake for 24 hours and everything that encompasses. It is probably connected to the dizziness and fatigue as well. It has improved over the last week though and hopefully will continue to do so.

Other side effects I’ve had were more transient. I had tingling in my fingers and toes which lasted for about 3 or 4 days after the cisplatin IV, but that has stopped now. I also developed a metallic taste akin to having a piece of tin foil in my mouth, but thankfully that only lasted for about 24 hours and my taste has returned to normal. I had a dry mouth and was slightly achy all over for a while but nothing you’d go to the doctor about. My sleep was pretty awful for the first half of the week which didn’t help things, but the hospital gave me a stronger sleeping pill which seems to have done the trick. My mood is fluctuating a lot and I go through periods of being low and/or irritable, but I think that’s pretty natural considering what’s happening so I don’t know if that’s a direct result of the treatment or whether that’s just from being fed up of having cancer and being in a bit of a limbo period where I feel like I don’t have any real purpose or focus.

The above is obviously not ideal and means I have to pace myself throughout the day and makes me hyper aware of how I’m feeling, but doesn't leave my housebound and means I can generally get out and about. Considering my fears that chemo would completely knock me for six, and I might be spending days in bed with flu like symptoms, I’m pretty happy with how things are going. I have spent the last 2 weeks pretty much constantly surrounded by people, with friends and family, watching a lot of tennis and football. I’ve been out of the flat every day and now feel, in week 3, that I should try and do as much every day as I can. I have no plans to run a marathon, but some daily yoga is on the agenda as well as regular trips to decathlon to take advantage of their table tennis and badminton. My appetite has been as strong as ever but my diet poor, consisting mostly of cheese on toast and Gu Zillionaire cheese cake (currently half price in Sainsbury’s). I'm being told that I'm at risk of becoming skinny-fat so more salad and vegetables are on the agenda for the next couple of weeks.

A more recent development is that my hair is starting to come out, pretty much right on cue. What started on Saturday as a few hair coming out when I run my fingers through it has now got to the point where a strong gust of wind means hair flies past my eyes. There are no bald patches yet but I’m going to take the hit in the next few days and shave it off. It will definitely make me feel a lot more like a ‘cancer victim’ than I currently do, both when I look in the mirror and for how other people treat me, so will be quite distressing in that sense. I don’t think I’m going to suit the bald look and will have to do a fair bit of digging for some headwear that suits me but I guess it’s a part of the cancer experience that I have to accept and will try to embrace. The bald, skinny-fat look is not the summer look I was really going for but at least it will mean people will focus on my witty personality instead of being distracted by my good looks. 

My plan for the next two weeks is to take advantage of the slight uptake in energy that I’m experiencing and try and get out and about each day. I have to manage the fatigue and dizziness, and still have a shot immune system that I need to be conscious of so I don’t end up in A&E through catching a cold, but I think the more I do, the more energy I’ll have, and I plan on forcing myself to be more active each day. So London people - keep me in mind for plans and any good things going on.

Obligatory selfie and potentially the last photo of me with hair for a while.