Hello! Back with another blog after a few weeks. I actually started drafting this one a couple months ago but got distracted (nothing new there). I have been very busy recently, as we all tend to be in the lead up to Christmas. This year in my new job, I'm responsible for running Christmas parties for our members so that has taken up a lot of my brain power. During the summer, I spent about 6 weeks pretty much running on empty. Luckily I have felt much better the past few months, in terms of general health but I am having to make adjustments to look after myself, i.e. taking things slower, not saying 'yes' to so many commitments and more, as the title of this post would suggest. When things are seemingly going well (i.e. the cancer is stable), it's easy to forget that I'm still on active treatment which does try its best at times to get me down!
One of the 'joys' (read with sarcasm) of living with cancer since 18 years old is never knowing adult life without cancer, the loss of the years I should've had to wallow in my innocence. Don't get me wrong - I did my fair share of clubbing, all-nighters, ya know, normal student life, but it was all tainted with a fear that my life was going to end soon, that I would experience pain, and that my future would not be what I'd always assumed it would be. Now, nearly 8 years on, I am in the very lucky position where my cancer is stable, doesn't cause me any symptoms, and the treatment I am on is working and is mostly manageable. I guess I could say that I'm doing a lot of the things I didn't think I'd be able to when I was first diagnosed: working full-time in a job that I enjoy, travelling abroad, going to gigs all the time, in a great relationship. If that was my full-time life I'd say I'm living the dream!
But of course, that's not the whole story. On top of trying to live the high-life because of the whole 'live like you're dying!' mindset, while also trying to live the normal adult life (working, paying rent/bills, keeping fit, feeding yourself, keeping up with friends and family, keeping on top of life admin), I am dealing with having a life-threatening illness, and I am living with the physical impacts of that illness.
The last few weeks of summer really tested me. Happily, my scans in August indicated stability, but all through August my body was telling me to 'stop'. We all experience 'burn out' from time to time but this was another level of exhaustion. I was experiencing bad side effects from my medication. Predominantly I was fatigued, as well as lots of diarrhoea (which obviously comes with dehydration), and nausea. On top of this, since May, I have had ongoing styes in my eyes. Both eyes. They just wouldn't go away and kept coming back no matter how often I hot-compressed. I started a new job in May and I feel like the stress of that just built up and my body and brain were unable to cope with much more. Summer is always busy - holidays, concerts, more socialising than usual, so perhaps not the ideal time to start a new job. I do find that every 2-3 months the effects of my medication get a bit much for me and I tend to end up needing a break.
At the end of May I took the decision to quit drinking, at least temporarily. In the lead up to this, I'd drastically cut down on my drinking, already swapping some alcoholic drinks for alcohol-free options or water. I'm also reasonably careful about eating very fatty foods and avoid greasy takeaways (aside from a rare treat).
The last straw for me in May was attending my cousin's wedding and being unable to sit through the meal, after having just one glass of prosecco, due to diarrhoea. I continued to have diarrhoea throughout the evening, despite having a minimal amount to drink and ensuring I didn't overeat either, and despite taking all the loperamide I could. That was the last time I drank alcohol to date (okay, aside from the rare sip of fancy wine or a taste of Jacob's beer!). I'd had a series of these occasions where I'd had only one or two drinks and ended up spending the rest of the night on the toilet - and it just wasn't worth it any more.
In August (my birthday month!), I had so many lovely plans. I stuck to most of them, but I found that I was really struggling to keep up with myself and my peers. In particular I recall two weekends away - one with my boyfriend's family in Suffolk, and one with my friends in Cardiff, and for both I was just so tired. Fatigue. Fatigue is the worst side effect I have experienced so far. Diarrhoea is awful, but at least in between toilet trips you can get on with your day. With fatigue, the day is decided for you - you can't do anything. Every little task is exhausting. I'll be doing things that I have to but I'd be barely there, certainly not 'present'. Work was unproductive and draining, and trying to go for walks, sight-see, enjoy days out, not only is it really tiring, but takes a toll on the brain as all I want to do is enjoy my time and be present and do what everyone else is doing and be good at my job, but instead my body just wants to curl up and rest.
At the end of August, I went to Reading festival, and in anticipation of that, recognising how tired I felt, I took a short break from Cediranib. Meanwhile, I took a course of antibiotics for my styes. Reading was amazing - one of the best weekends of my life in fact, even better getting to do it with my sister and best friend! Though I knew I still wasn't feeling right... in fact I felt like I was coming down with a cold. Sure enough, come Monday morning I had a full-on cold. A couple days later I decided to take a COVID test and surprise surprise it was positive! NOOO!
Unfortunately, Covid got me badly. Think sinus infection, ear infection, chest pains/infection. It seemed to just work it's way around my body. I was ill for weeks. I took more of a break from Cediranib (which comes with it's own concerns about disease progression), and tried to give my body the rest it clearly needed. Luckily, it didn't get as bad as I know it has been for so many people, but being ill for weeks on end is so disheartening.
I did eventually start feeling better, thank god. It felt like one day the fatigue cloud just lifted and I realised just how much of myself I was missing - right down to simply having the energy to talk (I'm a big chatter box if you couldn't tell). It's such a relief that I have had months now without experiencing that level of fatigue, and I feel lucky as I know many live with a level of fatigue every day. It really proves the point that not all disabilities are visible and you can never tell what somebody is going through just by looking at them (or looking at their social media).
You never know what adjustments people are making to appear 'fine'. It could be a nap before coming out to dinner, taking extra medication before and during a day out, adjusting treatment patterns to be able to go on holiday, cutting out certain foods and drinks, cutting down on working hours, saying 'no' or cancelling plans, leaving events early to get to bed. These adjustments may not be noticeable to most, but are incredibly significant to the person making them. Chronically ill people spend a huge amount of time and energy on administrating our health: appointments, prescriptions, treatments, complementary therapies, and a huge amount of thought goes into managing our lives, beyond the norm. I think I've already mentioned how draining this all is? I haven't even gone into all the chasing we have to do of medical professionals, appointments etc. If you've ever tried getting a GP appointment in the last couple years - it's like that, over and over again and round and round until you end up breaking things out of the frustration (loosely based on a true story).
Quitting alcohol hasn't been too hard for me. It wasn't a hugely important part of my life, and as I said before I had already cut back significantly. I've now done so many things sober that would usually involve drinking: Reading festival, so many gigs, parties, a parliamentary event (with a free bar!), holidays, evenings at the pub, even a 'bottomless brunch' (unlimited prosecco - just a coffee for me!). I'm really proud of myself, though can't be too smug as I know for a fact that if it weren't for how ill Cediranib+alcohol makes me feel, I'd be there drinking as much as most of my peers.
Drinking culture is huge in the UK (more info on drinking/alcohol here: https://www.drinkaware.co.uk/research/alcohol-facts-and-data/alcohol-consumption-uk). Alcohol is a big part of our culture, seemingly a necessity for socialising, a part of daily life. Not-drinking is abnormal. The only people who don't drink are pregnant, or recovering alcoholics, or on antibiotics, or doing 'Stoptober'. At least, that's what it feels like. We Brits drink at any given opportunity - a drink with dinner, after-work drinks, weekend drinks, drinks at weddings, concerts, funerals, a bottle of wine to say 'thank you' or 'sorry' or anything, pre-drinking, drinking games, shots in our coffees, aperol spritz and Pimms just because the sun is out. Being a non-drinker makes you stand out from those around you, especially in the UK and especially at 26. However, fortunately the younger generation are clocking onto the dangers and disadvantages of drinking and there are more sober and sober curious 18-26 year olds than there are in the older age groups. It is becoming more normal to not be drinking and to have people actually say 'good for you!' rather than 'Aw, why not? Why not just have one?' or 'You're boring!'. It helps me that the majority of people I hang around with know all about my situation so don't make a big deal out of me being sober. That said, I can't help but feel like I'm missing out, and angry that cancer has taken this out of my control. Most days I think 'I really don't miss alcohol at all' but some days I just want a glass or two of prosecco like everybody else... I've had situations since quittin gdrinking where my 'hangover' is just as bad (if not worse) than my drinking friends', and I feel like, is there any point in restricting myself if my side effects make me feel like crap anyway? See, that's the thing. Quitting alcohol hasn't disipated my side effects. I still feel tired, dehydrated, experience bad diarrhoea and nausea. It just reduces the chances of aggravating the side effects. Example: That bottomless brunch, in which everybody had unlimited alcohol. All I had was a coffee and a meal and my stomach was in bits anyway. I couldn't drink enough water to keep up with the amount I was going to the toilet. I felt terrible. Would a glass of bubbly have made things much worse?
Truth is, no matter what changes I make to my diet, I can't control my side effects. I'm taking, essentially, poison every day, and my body does it's best to cope with it. The poison is keeping me alive (has made sure no new cancer has grown in the last 3 years!), but it makes me feel ill. All I can do is alter some of the ways I live to give my body the best chance at being strong, energised and happy, and remember to go easy on myself. While I can be lazy at times, it is not lazy to take things slower and say 'no' some times. The constant pressure to live each day like it's my last is an unrealistic and unatainable goal, so I'll just keep living each day as it comes, doing what brings me joy when life allows me to.
Thanks for sticking with me despite the infrequency of blogs.
I had a scan this week so may well return with an update soon! Please cross your fingers and toes for stability for me, as my life has no space for cancer progression! No THANK YOU!
Until next time,
Mx
P.S.
Support for the Sober/Sober-curious:
Sober Girl Society: https://sobergirlsociety.com/
rinking culture
Some Cool Things I've been Up To Recently:
My Story for the Dignity in Dying Campaign for an Assisted Dying Bill in the UK:
Santa in the City 5km run for Sarcoma UK, donate here (Looking to raise just £100 more!):
Very interesting to read your experiences regarding alcohol. I've noticed that more young people are by-passing the whole thing and as a very long standing teetotaller myself, I definitely recommend it as a lifestyle. I've been talking to friends about it recently (funnily enough) and they were also saying how tricky it is to avoid it as it is so ingrained in the culture, especially in the work situation. In earlier years, I remember the focus of any night out would be the pub or anywhere we could get a drink and it would be really important, but now, hanging around with other non-drinkers, it never even crosses anyone's mind. Thank you for another fascinating read and sending a ton…