Sunday 27 November 2016

Perks of the Condition

After the Stand Up To Cancer Gogglebox appearance I mentioned in my last blog I was fortunate enough to be contacted by Channel 4 on behalf of the England Footballers Charity, and the players that had taken part in the show, with an invite for me to go to Wembley and watch a game. Although I've represented Wales throughout my judo career, I was born in London and have followed the England team since I was a child, so I jumped at the chance to watch them play at such an iconic venue.

The day of the game against Spain arrived and my father and I set off for London, where I was to meet up with one of my uni mates who was going to be joining me for the game, as two tickets had been provided and my father has less than no interest in watching a game of football. He had instead prepared for the wait by bringing along a book to sit with in the car while I went into the stadium.

On arrival I met up with my mate and made my way into the main reception behind the Bobby Moore statue (shown below, he had used the time waiting for me to get a cracking picture of said statue) where the tickets were being held awaiting our arrival. As I gave my name and the receptionist started to flick through a pile of envelopes for my tickets my contact from the FA Charity appeared and informed me that along with the tickets for the game we had been allocated two wristbands that would allow post-game access to the Atrium bar, where the players and their families would congregate after the match was over. As I thanked him for this he asked what my father was going to do for the couple of hours while I was at the stadium. Upon hearing that he was sat in the carpark reading a book he kindly went in search of a third ticket for the game and the bar so that he would be able to sit in the warmth of the stadium instead of wrapped up in the car.

Bobby Robson, Overlooking Wembley Stadium Entrance

With a message sent to inform my dad of this development, my friend and I headed to the entrance of the stands in search of our seats. We were pleasantly surprised to see that we had been placed just in front of the media, not far from the half way line, with an outstanding view of the entire pitch.

Spain being the opponents I was prepared for a bit of a demolition by the visitors, and so was pleasantly surprised when Vardy was brought down in the penalty area in the 8th minute and Lallana slotted the resulting penalty home to send England into an early lead. The crowd erupted and I was glad I had chosen this point to start broadcasting my evening on snapchat. The 80 plus minutes that followed would contain an enjoyable, if frustrating, game of football that left me very glad that I had accepted the offer and made the journey across to London that day. Even if they did let the lead slip and end up with a 2-2 draw.

On the journey to London I had discovered that my tumour twin was coincidentally on the way to the game from Birmingham with her boyfriend, so as the stadium emptied we agreed to meet by the Bobby Moore statue to say hi and have a quick catch up before they headed home and we headed into the Atrium bar to wait for the traffic to calm down.

Half hour later I was sat in the Atrium bar with my dad and my mate, looking around the room and deciding which section of the free buffet I would attack first when the contact from the charity reappeared and asked if we wanted to meet the players. An obvious one word answer later we were headed across the room and back to a section where some of the players were sat, making the most of their Carlsberg sponsorship.

We had some photos taken (see below) and chatted about the game as well as Stand Up To Cancer and the impact it had had on them and the public, making me feel so glad once again that I had been a part of the campaign and been able to reach such an audience with the SU2C message.

It's fairly obvious why I entitled this post "Perks of the Condition", cancer has changed my life in a multitude of negative ways, but at the same time I've been able to experience things that I never would have without it, and in most cases I've been able to take friends and family along with me for the ride. This evening is just the latest example, and hopefully next year I'll be able to write about something even bigger and better, but I won't talk about that too much just yet. I don't want to risk putting a jinx on it when things have been progressing so positively of late.

Tuesday 8 November 2016

SU2C: An Evening at Channel 4's Pleasure.

Having prioritised my blog about treatment I will now go back a couple of weeks to Stand Up To Cancer! So here it is: A few Fridays ago my family and I packed our things and headed to the train station in Bridgend, destination: Westminster Great Hall for the SU2C filming, via London Paddington and the Savoy Hotel. The day was to be even more heavily SU2C themed than we had expected as we arrived at the train station to see three men with buckets collecting change for the cause. A Channel 4 financed train journey later we rolled into Paddington and were met outside by a car to take us to our hotel.

As you may expect, The Savoy is slightly nicer than the Premier Inns I'm accustomed to. In fact it's so posh that it doesn't even have a reception, it just has an entrance hall with staff milling about to greet you and show you to a small desk for the check in process. Once checked in and settled in my room I perused the pile of leaflets that showed the treatments and services available to guests, thinking that I might squeeze in a massage before we headed to the filming. This thought was quickly dismissed when I looked at the right side of the page and came across the prices. These numbers quickly prompted me to change tack and dash down to the pool which came free to all guests at the hotel. As time was limited before I would need to get ready for the filming I decided to make a quick visit to the sauna and steam room and then head back to my room. Perhaps not surprisingly this hotel had a sauna and steam room in each of the changing rooms, so I never actually made it to the pool side. Instead I spent half hour steaming and saunaing (pretty sure that's not a word, but we'll roll with it) before gathering up my complimentary Savoy branded slippers and heading back to my room.

Sauna'd, showered and suitably dressed I took a lift down to a reception. Or at least I attempted to. Just outside my room was a lift that I should have noticed was a lot less ornate than the others, however I got in and pressed the ground floor button without much thought. It took a couple of button presses but eventually the lift was on the move as far as the second floor, where two cleaning staff waited with puzzled expressions on their faces. It turned out I had ended up in a service lift for use only by staff, that would not work without a card being scanned by a staff member, I had just happened to get in as the cleaners requested it two floors below. After I had explained that I was just a confused guest and not a new recruit to the cleaning staff, I was shown the way to the correct set of lifts and continued down to the ground floor and the foyer where my parents were ready and waiting for the car to the studio. When we arrived at said studio we were given bands to give us access to both the green room and the studio audience, along with a private quiet room should we require it. However the free drinks and canap├ęs in the Green Room meant we were unlikely to use the quiet room at all.

Throughout the night we milled about in between the Green Room and the audience depending on how interesting the current live act was and whether the show was in a period of pre-recorded programmes. As well as those that had taken part by showcasing their cancer stories there were a number of celebrities around these locations, this led to an accidental blanking of Boy George, my mother bumping into "that blonde guy we saw on C4 the other night" (pretty sure it was Jamie Laing) and Josh Widdicombe offering my brother and I tickets to see him live in Cardiff the following night. Sadly we both had previous engagements so couldn't make it, as tempted as we were to bail on our existing plans for the sake of some free, quality stand up.

Unfortunately the choice of the Green Room turned out to be a poor one when it came to watching the show, as it was full of people chatting loudly all the way through the broadcast, so I got hold of a stack of DVD's of the night so that I could watch the show as it was broadcast instead of watching piece by piece on Facebook and YouTube.

The event itself was a massive success, raising over £15.7m for Cancer Research UK, and I'm so glad I was able to be a part of it. One of the massive silver linings to my diagnosis cloud is that I've been able to take part in events like this, and thereby help raise money for cancer research as well as the profile of Brain Cancer in the UK. Hopefully this is something I'll be able to continue to do as I continue the fight into my 26th year (my birthday is on Nov 19th. All cards and presents addressed to Mr James Keith Warren MacDonald BSc, Sandan, Order of Merlin 2nd Class).

For anyone that missed the film "Jamie's Story" you can watch it below, and for anyone that wants to catch up on the Gogglebox special about my story you can find it here.

Tuesday 1 November 2016

Chemo Completion

This blog post I fully expected to either be about the start of my 5th cycle of chemo and my impending week of unsettled stomach and tiredness, or as a roundup of my weekend at SU2C. However, I received a phone call this week that came straight out of left field and threw those plans out the window.

As I have mentioned previously, my chemo has been delayed lately because of low platelet levels showing up when I have blood tests done to assess my suitability to start treatment. The platelet value should be 100 or above to allow chemotherapy to commence and mine has been significantly lower, dropping as low as 14 last week, meaning my chemo has been postponed a couple of times. At the start of the week I went for another blood test, hoping to have recovered enough to keep my treatment on course for a finish by the end of the year. A couple of days ago however, I received a call from my oncologist bearing the news that my platelets had improved marginally but still sat at 16, miles away from being able to start any chemotherapy treatment. As I began to feel slightly disappointed she continued by saying "... So at this point I have decided I wont be prescribing any further chemotherapy. You're officially off treatment." I don't know what I expected but it definitely wasn't that.

After a bit of a discussion about the reasons for and against this I agreed that this was the best course of action for a couple of reasons. Firstly the chemo is underway because I'm physically able, not as a reaction to a growth in the tumour, so stopping shouldn't cause any significant negative responses in the tumour (touch wood). Secondly the chemo is clearly having a significant impact on my bone marrow and she didn't want to decimate it when the chemo isn't actually desperately needed. She would rather save my bone marrow for potential future occasions where there is a sudden growth which needs to be brought under control.

As a result of this my treatment plan moving forward will be to monitor my bloods weekly to check my platelet levels are recovering as expected. I will also be having a full assessment and scan in the new year to allow a decision to be made regarding finally being able to go away on my trip. Other than that, nothing. I know that I will undoubtedly be going back onto chemo at some point in the future, but, for now, it's nice to finally be off treatment for the first time since March.

Over these last eight months I've been through four cycles of chemotherapy, which adds up to a total of 140 tablets bearing chemicals; I've managed to keep my hair (just about) and - other than a dodgy gut during the latest cycle and some tiredness throughout - have felt okay all the way through; I've been able stay in the gym three times a week other than on a chemo week and have started doing some yoga as a way of getting a bit of extra exercise in during the week; finally - and most importantly - I've had Timmy reduce in size by just over 1/5 of his diameter. The impact of chemotherapy on brain tumours is oft-debated as there can be problems with enough of the chemicals getting across the Blood-Brain Barrier to make a meaningful difference, but based on my experiences I have to say the side effects are definitely worth the benefits and I won't hesitate to go back onto it at some point.

Now I'm off treatment though, I can start to work on myself without having to take breaks every six weeks, I'm going to do a little bit of judo coaching and working on ways to potentially get myself on the mat training in some way.