So, we are just about a month post-op, as a house and family we’ve been through a fair lot but I’m going to try to do my best to update my wonderful readers on as much as possible. Sadly, there isn’t much great news to share in the blog and I’ve set such a high standard of comedy writing in the previous entries, you might not get as many laughs in the next five minutes but stick with me.
A few posts ago I referenced Schrödinger’s cat as a sort of analogy of not knowing what’s going on and I quite liked not knowing as it allowed for more positivity. Well, we opened the box and much like the 90’s hit Movie ‘Se7en’ after the surgery Sarah and I were anxious to get the results….maybe not to the extent of Brad Pitt shouting to the nurses “What’s in the Box” but we just of horrified to find out what we found inside.
We know originally we were given a grade 3 diagnosis which was downgraded to a 2…good news….well after taking a look under the hood we were bumped back up to at least a grade 3….fucking Timmy. What this means is the tumour is a lot more aggressive than originally thought and moves me toward radiotherapy and chemotherapy quicker than initially thought and wanted. The doctors eloquently described the situation as “shit”. This was naturally upsetting news to hear and left me thinking, well how long do we have…..to which I don’t really have an answer.
The next steps in the process were laid out as I was referred to Leeds St James’ Hospital’s cancer centre to oncology consultants and nurses. My first meeting with the consultant wasn’t the most pleasurable experience…where I heard one of the top phrases you don’t want to hear in your life, things like….”it’s too small, I can’t find it” or “but Daddy, he was already dead when I found him”. Well, the number one do not want to hear phrase is “incurable brain cancer”. What this means is my radiotherapy and subsequent chemotherapy is aimed at stabilising the tumour growth rather than curing the cancer. I mean disappointing to hear but this isn’t too far away from what we always knew. What is likely to happen is that the radio and chemotherapy will kill off the worst of the cancer cells and keep them at bay from spreading and making it worse. They will try to keep these down for as long as possible, beyond that I don’t really know much more. I liken it in my head as something I saw David Attenborough describe on one of his wildlife documentaries about the Anole Lizard that regrows its tail after being attacked by a predator. So, the radiotherapy and chemo are the predator, it bites off a big chunk of the tumour, but eventually, it will grow back.
This may seem all doom and gloom, but in all honesty, after going through the surgery I feel a lot stronger mentally and therefore more positive. I mentioned at the start of my journey, that I didn’t really understand the phrase ‘fighting cancer’ as I always thought of the doctors doing all the work and I’d just be sat through it reliant on there work. Well, I can now truly say, the fight is on and the fight comes from your attitude toward your illness. I could easily, be negative about the situation and yes it is shit and just sit and wait for it to kill me off…..or I could say, I’ll battle through the shit times of radiotherapy and chemo and fuck it, whatever shitty side effects come my way, I’ll stay positive, attack it with a smile on my face and be thankful. I remember reading in a book that you need to take responsibility for everything that happens to you…at the time I thought, that’s stupid, what happens if something horrific out of your control happens, but now I can see that although getting this terrible disease isn’t my fault, it is my responsibility how I deal with it…I choose endless positivity.
I haven’t been too sloppy and soppy in the blog and I rarely am full stop, but on the subject of being positive and being thankful, what I have found therapeutic in the last 3 weeks after the shit phrase and the news is looking back and being thankful and grateful and as stupid as this may sound but I am still lucky to be in this situation and although I’m sat here, 32 years old with brain cancer, I also have an amazing wife, 2 fantastic children and have experienced more than your average 90 year old thanks to a very privileged upbringing with great parents who helped me experience global travel at a young age.
“That’s not sloppy” I hear you say, well, buckle up cowpoke. How thankful am I to have lucked out with Sarah and everyone around me? Let’s call her Super Sarah from here on in, she looks after two children, Sophie (nearly three) and Josh 4 months, pretty much solo effort and then sorts out my drugs and is basically my full time carer….although she does draw the line and cleaning my anus pre-colonic irrigation. Joking aside, she has been amazing and allows me to keep the positivity and keeps me smiling and happy which through all of this is one of the most important things.
Let me set something straight though in case you’re reading this thinking it’s all positive thoughts and if you think anything negative, you’re losing the fight. I think of negative stuff all the time, but I recognise it when I do and I either talk about it or I try to turn my thoughts into positive ones. But, I’ve thought about dying, my funeral, what it’ll be like for Sophie and Josh growing up without a Dad. I even got jealous about Sarah re marrying at one point. Do not worry though, if there are such things as ghosts I’ll haunt that motherfucker.
Post-op experiences, mostly, I feel tired, very tired, all the time. I hate being tried, it’s shit….but radiotherapy makes you more tired so lots of things to look forward to. I’ve the increased tiredness comes a higher risk of seizures, so they upped my Keppra to 1 gram morning and evening…and it’s a 1 gram tablet….it’s fucking huge. You’ll have seen pictures of Burmese Python’s eating full size adult deer, dislocating there jaws and forcing the whole body in one go….this is what I look like eating this 1gram tablet. Other side effects have been my itchy scar…I just want to scratch my head, but I’m not allowed due to risk of infection. I have a few slurred words every now and again and Sarah says I look a bit droopy sometimes, but other than that I’m okay. I started taking a low dose of sleeping pills which have helped me sleep (obviously) and I’m becoming more alert and can do more through the day. I played golf (used a buggy), I mean I was absolutely shite but I played. Scored a birdie and a par back to back which was a highlight, but I did hit my driver on the other 16 holes an average of 13 yards.
In preparation for radiotherapy I’ve had a mask made, this is a unique mask fitted to my face, yes, they had to get extra materials brought in to get it around my nose but it’s fitted….pictures on Insta and Facebook. I was a little nervous about the fitting as my scar is healing and I didn’t want them to pull my stiches out or it to pull at the scar as I thought it might hurt….but apparently, the technicians had done this before and in fact it was a really nice experience. It was like having a facial, they put a warm soggy mesh (technical term) over your face which feels like a warm flannel and they gently press this against your face until the mesh sets into a plastic mould.
The only thing I wasn’t prepared for my fitting was the waiting experience. When I went to the radiotherapy department, it was full of cancer patients. In retrospect, I should have been prepared, but I haven’t been around this before and seeing the people I was surrounded by made it hit home how bad cancer is. I mean, I know it’s bad, I’ve always known cancer isn’t a game but seeing all the poorly patients there made it very real.
One thing I’ll add to the end of this post as words of positive advice to fellow warriors is try do ‘normal’ things. It’s difficult in COVID times, but having normal days and being social with friends and family keeps you going, it allows you to forget for a second that it’s shit and that you’re grateful for everyone you have around you. My favourite day post op was a rainy BBQ with both sides of our family coming together and having one weak beer with everyone. Simple, normal things do make things easier.