Each year there’s a Christmas special, Eastenders, Gavin & Stacey, Vicar of Dibley and now, Timmy the Tumour has one. Now, I know there’s probably a reason we don’t talk about cancer too much at Christmas, but I’ll try keep it light and I’m going to link each chapter to a Christmas theme so we stay on topic.
Firstly though, How are you? This is a question I get asked a lot, if it’s someone’s first time asking I usually get asked in a hushed tone and they lightly caress their own head where my scar is. I was recently in a shop and a woman approached me and learnt toward me saying “Are you okay?” I was caught off guard and my first thought was is something wrong with my face, am I having a stoke? I wasn’t, she then asked again doing the scar caress action. My usual response is, I’m fine, but I’m not, which is true. It’s been a gruelling 6 months since surgery, 33 sessions of radiotherapy and now I’m undergoing chemotherapy.
Like radiotherapy, I thought chemo was going to be a lot more invasive. The Hollywood movies usually show the patient hooked up to drips with high quantities of drugs being flushed directly into their veins. I’m taking a chemo drug called Temozolomide and it’s a tablet form of chemo (not sure if it’s available in drip format too) but I take the capsules for 5 days then have 23 days off. This 28 day total is called a ‘cycle’. I’m undergoing 12 cycles which is pretty brutal but not many people get to 12 as their bloods drop below the required levels.
So far, my hair has grown rather than fallen out which is a blessing and I’ve had two totally different experiences in the two cycles I’ve completed so far. The first was horrific, I was very sick, I mean projectile vomiting. I didn’t know you could throw up with such velocity that you didn’t even need to be in the same room as the toilet to reach it…I mean, if vomiting was an Olympic sport I’d be compared to Jonathan Edwards. My second cycle was much better, I was walking 5kms, much better with the kids etc…however, this cycle took me a lot longer to recover from and I’m not sure I even recovered fully before number 3 began, my siezures have become a lot more regular and I’ve been getting funny feelings about 10-15 times per day.
Anyway, enough, onto my very weak linked Christmas themed blog.
All I want for Christmas
Now, I don’t want a lot for Christmas, there is just one thing I need etc. etc.
When you have a brain tumour and you’re still in early days like me you get scans every 3 months or so to make sure there isn’t any regrowth or spreading of the cancer. Mine, landed on the 16th December getting my results on the 21st. As if anxiety levels weren’t high enough…it’s the Christmas decider and it can either go; 1) Shrinkage, which is very unlikely, 2) Stable, which means no regrowth and the treatment is in effect, working. 3) Growth, this is the shit myself area.
So leading up the scan, Mariah, All I want for Christmas, is a stable scan.
Drum Rolllll…….I got it, wrapped up in golden wrapping paper….A stable scan. I remember one Christmas when I was between ages 3-8 I’d asked for a train set. Christmas morning came, I ran into my parents’ room, jumped on the bed opened my presents like a ravaged animal. Throwing non train shaped gifts in my Dads face in disgust. Then, I went into the living room, there it was, all set up…must have taken hours. Absolute delight, best Christmas ever. Well, sitting there waiting for my Consultant to tell me the results was like unwrapping socks, chocolates, Harry Potter books…cut the crap Doc, where’s the train set…well there it was, a stable scan. Thanks Mariah!
Now, I had to get sign off for this chapter, as to not upset the wife…so I hope it’s worth it.
A bit of background, Sarah does 99% of the housework, mainly because I’m tired from chemo a lot and well she potters about and just does jobs. I’m currently having a lot of little seizures everyday which isn’t helping that 1% that I have to do. When I say ‘seizures’ there’s lot’s of different types, I don’t mean I’m having full on fits all the time. The most I get are focal seizures or auroras. They last between 2 seconds and a minute and usually involve me just staring into space and having a funny feeling, sorry that’s not my most descriptive of stories.
Anyway, a few times a week, Sarah goes out and leaves me Home Alone and unlike Kevin McCallister I don’t want to be interrupted, I want to lay on my arse and do fuck all. Sarah and I differ on what fuck all looks like and she usually throws in a job or two like, “Alex, while we’re out would you mind washing/vacuuming/emptying the bin”…I know what you’re thinking, how dare she, the evil devil woman. But, fuck all for me, means really, really, fuck all. Lay in bed, shut eyes, not sleeping, just letting the mind wonder. No seizures, no noise, just nothingness but the sweet, sweet bliss of fuck all. Sometimes I try and escape the craziness my making us a cup of tea so I just stare at the kettle and enjoy the silence. They say a watched pot never boils, it does.
Christmas as far as I can remember has always been about family. Everyone meets at my parents house usually between 15-30 people across the day, we eat, drink and play games. Last Christmas was no different. Lot’s to drink, lots to eat and kids laughing and in awe of all the presents. I even managed to run a 5km which accumulated in an attempted poo in Sutton park. If I’d have known it would have been my last Christmas getting drunk on Advocat, beer and wine and making my way through family Trivial Pursuit by pitching up every 30 mins by just shouting Geoffrey Chaucer in hope it’ll be right one day, I’d have drunk until blackout and learned another old poet’s name to shout out.
2020 has changed for everyone, C***d has pissed on everyone’s Christmas plans. We’re having a much smaller Christmas this year, which is probably great for my sanity but hopefully next year, the virus will be gone and we can all reunite.
Fairytale of New York
These links are getting tedious now, but as most of you know the business I started 3 years ago catering to clients in New York…I know, fairytale or what!?!
With the economy as it is and without doing much/any work in the last 12 months the fairytale could be over. I’m going to make another go of it in the New Year and hopefully keep the train rolling on. I’ve also started some tutoring work at my old School, where I will be teaching Business Studies A-Level…so this is exciting and may lead to new chapter of my life in the years to come….for now, it’s knuckledown to the old cold calling in a 5x5m bedroom!
There is no link to Christmas here.
After brain surgery you’re advised not to wash your hair for several days and then when you start to wash it use baby shampoo, during radiotherapy I also used baby shampoo to try limit my hair loss…it didn’t work.
Now, here’s what I found. Do you remember as a kid, you used to get a bit of shampoo in your eyes it was like the world ended…”MUMMMMMMMM, get a towel” then all of a sudden it stops hurting, I inject Pantene Pro V into my eyes on a daily basis and I don’t give it a second thought. However, going back to gentle baby shampoo, that motherfucker stings like hell. Here’s my theory, the shampoo chemical producers, they’re making children more reliant on parents and making us more useful so we have to be around with a towel ready to save the day.
We’re still going with our charity work, so far we’ve raised over £10,000 in four months which is an amazing achievement by the runners and from everyone who has donated. We have even attracted attention from the likes of Gareth Bale and Joe Hart (Check the Gram peeps).
However, we’ve still got a way to go, so if you’ve enjoyed the post and if you don’t like cancer, try donate this Christmas at https://www.justgiving.com/fundraising/11k411k
Have a great Christmas and New Year!