Hello everybody,
I hope you are all well and had a good summer.
I have now completed my one year of Temozolomide Chemotherapy and have thankfully been given a break from treatment, after scans and a consultation revealed no growth of the tumour.
I had the MRI scan last week and was asked the million dollar question: 'Do you want music during the scan?' Experience should have taught me to say no, but I rolled the dice. After I said yes, I was asked what music I liked and after making a joke about preferring Peruvian Psychedelic Rock they stared at me blankly and said they'd put on some music. One horrendous pop song later I was cautiously optimistic it would get better and then Bruno Mars came on.
I have nothing against the little melted troll but the CD stuck about 20 seconds into the Bruno Mars song.
For 1 hour.
I waited for 20 mins to see if my zen-like demeanour would be altered by the combined sound of a hammering MRI machine and a very loud stuck CD.
I waited another 20 mins because I am patient and didn't want to stop a scan because of a stuck CD.
I then waited another 20 mins because the bell thingy they'd given me to alert them if there was a problem didn't actually work.
So after 1 hour they stopped the scan to inject me with contrast dye. I was very clear I didn't want any more music. It had been like Guantanomo Bay style mental torture. At least the song wasn't Barbie Girl on repeat.
A few days after the scan we had a meeting with my primary oncologist. He was smiling and jumping up and down. Maybe they'd found gold in my spine? No. The scans showed that it still looks a complete mess.
However, the tumour has not got any worse and according to him I am part of a group of less than 1% of his patients that survives this long. He really is such a positive guy, but for some reason he rewarded me for still being alive by slapping me really hard on the back. Never in my life have I had to stifle a scream so much - getting slapped on a tumour is pretty painful. Anyway, it certainly woke me up a bit.
Thank goodness for that and that means no chemo until at least February when I get scanned again. When I was taking chemo, I would eat sugar-free sweets to take away the nausea and taste of the pills. Then I got to the stage where the taste of sugar free sweets made me feel sick. By last month thinking about sugar free sweets made me feel sick. Nausea is a real pain. The feeling of almost being sick the whole time. Luckily the anti-nausea pills are pretty good but have side effects. They really bung you up. I mean really bung you up.
Being an inquisitive person I googled potential solutions and found a website created by expectant mothers taking this drug, Ondansetron, for morning sickness. I thought I had it bad, but some of these women were carrying more than babies. One was carrying 'more than a baby' for 3 months. 3 months without a toilet break resulted in a trip to the hospital for an induced delivery of the backlog. Wow.
Now my next problem is to get off steroids. They make you get fat quickly and after a year I can barely fit into my wheelchair. Too much sausage, not enough skin. So I am trying to reduce the steroids slowly without alerting my tumour to the fact. Last time I went off steroids the little chap decided to grow. So I am doing it slowly and hope to see the results.
I spent a year in South Africa and Botswana years ago taking huge amounts of steroids without anything to counteract their mood altering effects. At least this time I take medication to counter the paranoia, anxiety and rage that they induce. So hopefully I am bit calmer and more rational. I still support Liverpool and the Springboks which means an unhealthy level of pre-existing anxiety. Physically, the roids have made my head and body puff up like a balloon.
One other thing my darling wife noticed is that I now have an uncanny resemblance to both Harambe (R.I.P), as well as the smiling gorilla in the Gorilla Duct Tape Advert.
I suppose the glaring difference is no-one has tried to shoot me yet and if I ask nicely, I am let out of my enclosure once in a while. It doesn't bode well when you appear closer to a primate than anything else. Oh well. Hopefully reducing steroids will help reduce me to the size of a small primate.
I have had my cousins Cal and Ryan over a few times. They managed to arrive in Reading as part of a London adventure on the same day. Same place and same day, but one was travelling from South Africa and the other from New Zealand. Without ever communicating with each other. What a coincidence. They didn't find it that amazing. Having my two young cousins around, usually in some state of inebriation, has made me wish I was younger and also made me realise how old I am. It is pretty liberating to not have much to stress about.
Jay is well and is still reshaping young minds and ensuring the highest standards in grammar exist at her school. She has even created grammar booklets for the kids as an easy reference. I have been doing a lot of copy editing work recently and use the primary school grammer booklet often. It worries me slightly that I have zero recollection of being taught any grammar at primary school and that ten-year olds are now expected to know that much.
Jay and Carolyn also completed a 40-length sponsored swim at Brockwell Lido to raise money for Macmillan Cancer Charity. It was in the middle of October which means the water was seriously cold. We were freezing on the sidelines watching, sipping on coffee, so swimming must have been a nightmare. They both completed it in a really good time and raised a decent amount of money so thanks to all of you who contributed.
Speaking of getting wet, during the summer we tried to have a typical English short trip to the beach and booked a hotel room for the night We both even downloaded new weather apps for our phones just to be extra vigilant. We picked a day when it was meant to be hot and headed to Bournemouth full of optimism.
After 3 hours of intense traffic we arrived and found congestion so intense and ill-tempered that we decided to pay a lot for parking and be done with it. I didn't have the heart to tell my wife that my weather app on my smartphone had shown clouds following us the whole time.
By the time we had negotiated the heaving crowds and found somewhere fairly quiet it was pretty cold and a bit wet. It seemed that all of humanity had converged on Bournemouth Beach that day, specifically to take a few steps forward, then stop right in front of me and look around aimlessly.
The day at the beach ended with hot coffee and a message from friends in London, telling us it was over 30C there. I think they said uncomfortably hot. That really hurt.
When we finally got to the hotel we were told there was no parking. I nearly threw the blue badge at the parking guy and thankfully he made someone move. Day at the beach over.
Of course the next day we found a wonderful quiet beach with loads of facilities. It was still cold and wet though. Jay decided there was no point coming all the way to the beach without swimming and had little dip. The sea too, was cold and wet. After a minimum amount of swimming time Jay spent the next hour trying to warm up.
One of the main problems of being in a wheelchair, and there seem to be many, is that beaches are inaccessible. I have to park myself on the promenade and look wistfully out to sea. I have tried my wheelchair on the sand and it is a non-starter.
It is not too bad with other people around. However, when you are by yourself it is a bit weird just hanging out next to a dustbin with benches and the seagulls for company. It was still hot in London so we left the South Coast straight afterwards. Still, it was nice to get out of London for a day.
We recently went to Hammersmith Apollo to be part of the studio audience for the recording of two episodes of Live at the Apollo. Two shows, three acts each show and a lot of laughter. I recommend going to see Adam Hills, Gina Yashere and Michele Wolf if you get the chance. Special mention has to go to Sam Simmons for being a combination of a modern one-man Australian incarnation of Monty Python and a demented Super Mario Brother.
Nothing better than spending three hours laughing. And it was free.
So everyone, we are as well as we can hope to be, and looking forward to Christmas with family.
Have a wonderful Christmas and a festive New Year and I'll try and update the blog more than once a year.
Lots of love to you all.
