Tuesday, 14 November 2017

The messages of condolence and stories of Jamie’s inspiring attitude from people who have met him throughout every stage of his life being it school, university, sport or just in casual passing have been incredible. Being covered even on national news alongside personal social media being covered, thank you all for your messages, we appreciate each and every one, we just hope that his legacy lives on through the people he has inspired over the years. ❤️❤️

Any donations in Jamie's memory can be made on the link below to be split evenly between Marie Curie, as without them the last 3 months would’ve been impossible and Cardiff University Brain Cancer Research facilities to hopefully help put an end to cancer.


Regards, 

Luke & Susan MacDonald

❤️

Sunday, 12 November 2017

The messages of condolence and stories of Jamie’s inspiring attitude from people who have met him throughout every stage of his life being it school, university, sport or just in casual passing have been incredible. Being covered even on national news alongside personal social media being covered, thank you all for your messages, we appreciate each and every one, we just hope that his legacy lives on through the people he has inspired over the years. ❤️❤️

Any donations in Jamie's memory can be made on the link below to be split evenly between Marie Curie, as without them the last 3 months would’ve been impossible and Cardiff University Brain Cancer Research facilities to hopefully help put an end to cancer.


Regards, 

Luke & Susan MacDonald

❤️

Friday, 7 April 2017

Hashtag Cancer Perks

As anyone that follows me on any social media will be well aware, the last month or so has involved a lot of live music and the massive amount of track list revision that comes with arranging to attend three gigs in three weeks. First up was Craig David back in the third week of March, at the Cardiff Motorpoint Arena (formerly the CIA). This proved to be a massive challenge to my sobriety as I hadn't been to see any live music sober since I saw HearSay - coincidentally, in the very same venue - aged about 10. Fortunately this time the music was of a slightly higher quality as CD smashed it all night (I won't discuss the appearances of Big Narstie, a decision for which I'm sure you're all thankful). As I was "walking away" from the CIA my thoughts turned to "7 days" later when I'd be attending gig number two, this time at Tramshed Cardiff for Mallory Knox.




A much more lively affair this increased the pressure on, and eventually broke through, my plan to continue avoiding alcohol. As I was with my brother this time I felt that one or two bottles of lager would be unlikely to see me dribbling and mumbling my way around Cardiff on my own. The following morning I finally switched my revision to Divide and the "This Is: Ed Sheeran" Spotify playlist, ready for the biggest (and final) gig of the lot.



Rumours that we might get to meet the man himself (as the gig was in aid of The Teenage Cancer Trust) were flying around. This combined with the quality of his latest album were making for a very excited week preceding the trip to London's Royal Albert Hall.

The day of the gig arrived and the group from Cardiff TCT Unit all met up at Cardiff Central Station ready and excited for the day ahead. We boarded the train to London as a group and managed to sit as one group before channeling our inner 13 year old chavs by turning on a speaker and playing music to the rest of the carriage. The only difference to the aforementioned chavy teens being we were playing Ed Sheeran instead of Cally and Juice which we couldn't imagine any sane commuter having a problem with. We were, of course, wrong about that.

Just over three hours and one noise complaint later we arrived at the Royal Albert Hall and found a home for our bags while we waited for food and the gig itself to begin. As we had a few hours to wait for this the TCT had arranged a music workshop for us where we wrote and performed a couple of new songs that I expect to either top the charts soon  (due to my lyrical contributions obviously)  - or failing that, at least play a key part of Britain's next Eurovision entry.

As we performed our masterpiece together for the first time we were surprised by the appearance of some special guests in our midst: The support act had come for a listen. Although I had tried my best to stick in the background by writing lyrics I was dragged up to the microphones minutes before this arrival, so I now found myself singing (by singing I of course mean "subtly miming") in front a group of individuals who had been the soundtrack to my morning drives to school for years, Busted.

Settled back in our waiting room we had a preparatory talk from the organisers, ready for the arrival of Mr Sheeran himself: "No selfies are to be taken, this will slow everything down and a professional photographer will take group photos that you'll be able to download" was the warning issued. However when Ed Sheeran arrived some five minutes later the first words out of his mouth were: "Hi guys, if anyone wants a selfie or anything just ask and I'll be happy to take a few". You could feel the mood in the room take a massive upturn at this news, as most people had been stood with their Snapchat at the ready before the warning had been given by the organisers. As a result of this change of plans I ended up with this little pair of mementos before the gig had even begun:



After the excitement of the meet and greet we were ready to go out to our seats for the support act who, as I've already mentioned, were such a massive addition to the lineup that they could've easily been headlining. So we sat down together and waited for the music to begin, then Busted stepped onto the stage and The Hall went crazy. Having seen Busted live fairly recently in Cardiff I was fully revised-up on all the songs and was happily loving life, singing along at the top of my lungs when, a while later, we were approached by representatives of the Teenage Cancer Trust and asked to follow them from our seats to a backstage holding area.

It had been explained to us beforehand that we would be going on stage as a group during the intermission between Busted and Ed, so this was clearly the moment. We were encouraged to take phones and cameras onto the stage and selfie sticks were provided for those that wanted them. I didn't need to join the crowd surrounding these as I had my GoPro and an extendable handle for that anyway.

A few minutes later, as we were lined up along a corridor the music built to a crescendo and we were told to walk onward and through to the stage. The Royal Albert Hall is a magnificent sight from the outside as well as from the stands. Neither view however, can match how it looks from deep in centre stage while the entire crowd light their phones and shine them together towards you as you're stood on the stage. Plus it allowed me to get a cracking photo for my Snapchat Story.


Once we had finished our minute in the spotlight we returned to our seats and a stand that was awash with excitement. Rumours abound suggesting that a VVIP had been spotted in the Hall, and that this person was none other than DB7 himself: David Beckham. Unfortunately nobody thought to go and tell him I was in the building and willing for him to have a photo with me, so a glimpse at the box he was in from across The Hall was the closest any of us got to meeting the footballing legend.

On the up side, this disappointment coincided with the start of Ed Sheeran's set, which drove any negative thoughts far from our minds. It turns out he is as good live as you would expect and he had the entire crowd captivated and clearly a large percentage of people had been doing the required amount of pre-gig lyric revision as almost every song involved portions of the crowd taking over and singing louder than the sound system, especially during the most popular songs like Galway Girl, Castle on the Hill and Shape of You. Fortunately I managed to stay focussed enough to get some well timed footage without getting completely swept up in the excitement and forgetting I had the GoPro with me for a reason. Selecting the most visually pleasing sections of film I made the following short video to show off two of the highlights of the evening: The crowd lighting their phones as we were on the stage and the crowd when Ed sang the words "I See Fire":


Putting Ed aside for a second I've also got a few small cancer related updates. The most interesting of which (for many at least) will be that as my tumour has started showing activity again I have decided to investigate some of the "alternate treatments" that I'm so often told to try. The first of these to be attempted is Cannabis Oil. 

I've lost count of how many comments/messages I've had from people telling me that cannabis is a miracle cure for cancer. This is usually accompanied by a random online newspaper article about someone who has been "cured" by taking cannabis oil alongside the scientifically proven treatments like chemo and radio. I usually point out that without controlled research into its effects you cannot claim anything to be a "cure" for cancer, especially when you are receiving other treatment alongside. To me, taking cannabis oil while you're on chemo and then claiming the oil "cured" your cancer is not only stupid but dangerous behaviour. So, while I am aware that there could be some residual chemo in my system, the fact that my tumour has started to grow again makes me fairly confident that none of my previous treatments are currently active within my body and as a result, and positive signs at my next scan could be attributed to the cbd oil, at least tenuously. 

While on the subject of Cannabis Oil I'll quickly outline the product I'm using and where I get it from: I found a company in the UK that produces cannabis oil vape pens that combine Coconut Oil with a THC free version of cannabis oil. The fact that the THC has been removed then makes this product legal for UK distribution as you won't get the "high" you would usually get from cannabis that contains the psycho-active substance. It was relatively cheap, just £50 for the starter kit that included the pen, charger and your first cartridge of oil from a company called Medipen. I've now moved onto my second refill, and have tried both the spearmint and fruit punch flavours. As I usually "smoke" it at nights before going to sleep I'm enjoying the Spearmint flavour most as I've usually just done my teeth for the night so it goes quite nicely with the already-minty taste in my mouth at that time of day.

Changing the subject slightly, I'm hoping to go to Japan with my brother very soon. Unfortunately I had to abandon my original plan to revive my 'Round The World trip once again, but am still hopeful of visiting a few of my intended destinations this year. So hopefully, the next blog will contain some positive news from an MRI as well as details of my trip away, but as anyone that has been following this blog knows only too well, even the best laid plans often go awry.

Friday, 3 February 2017

January Continues to Screw the MacDonalds

This blog post will be slightly different to a usual post, this is due to the fact that, for once, it wont be focussed entirely around me. I'll state the facts around my latest MRI scan and then that'll be it for me as the focus of this post.

So, the MRI: My scan shows that the tumour has grown slightly in one area. Because of the chemo shrinkages it's still smaller than it once was, but the fact that it's displaying growth and activity is far from promising. Now that's enough about me.

Just over a fortnight ago now we were awoken by a loud exclamation from downstairs. My mother, my brother and I rose from a slumber to find my father collapsed in the corridor, struggling for breath. One successful 999 call and one accidental dropped call later and two ambulances arrived, followed shortly by a police car for good measure. We were informed that he had suffered a thoracic aneurism which could not be treated in Wales and as a result he would be transferred to St George's Hospital in London for an operation.

After an apparently successful operation he continued to deteriorate and we were asked to return to London a few days later. I won't be going into detail about the visit to London as it was a private family moment, other than to thank those who helped us with lifts, train fares and somewhere to lay our heads during the most difficult of times.

We returned to Wales the following day, hollow and deflated. Each wondering where we go from here. We had lost a Husband and a Father who had spent more than two decades making our lives easier every day. Personally when I look back I think of the first full day after I was diagnosed, when I opened my front door in Exeter to a hug from him and his sincere wish that he could take the tumour for me; I think of sharing the car on the way to and from every scan, every clinic appointment and every single treatment where we worked our way through most of the trivia games on the app store; then I think about how he took me to football training in torrential rain for years despite knowing I was rubbish; after that how he let me go without him to my judo competitions because he knew I fought better without family there watching me, accepting that he'd miss any successes but glad that he'd contributed by his absence; finally I open my wallet and look inside. There, tucked in a pocket sits a letter. A letter I received shortly after moving to Exeter, a letter which has been with me ever since I was diagnosed and which has given me strength time and time again. A letter which lets me know he was proud of me, he loved me, and reminds me that one of my qualities he admired is that I never quit and that I should continue in that vain.

One small mercy is that I managed to avoid telling him that the tumour was growing again. I know, because he had told me a couple of years before, that he was happy with his life and was ready to go. Plus it was a comforting coincidence that the place where he spent most of his adult life and loved to be in and talk about (London) also happened to be the place where he spent his final days. At least this knowledge that he was happy with his life provides some small comfort in these first few days, although it does little to help me work out what I'll do without the man that was the single biggest influence on my life, shaping every aspect of who I am today, and for that I thank him.

As a final note I will reflect on a thought I had on the journey back from London while the cast of the Lion King repeatedly told me through my headphones: "He lives in you". Sat there trying not to break down in public I realised how accurate that is. In every aspect of my life from my name, to my jawline, to my annoying habit of correcting people's grammar, he does indeed, live in me.

Sunday, 1 January 2017

Goodbye 2016, Come At Me 2017

Today marks the start of another year, 2016 has ended and 2017 has begun. This also means that in 5 days time, on Friday 6th of January, I will be "celebrating" mine and Timmy's second anniversary. Although it is unlikely he will want to do anything special to mark the occasion as I have spent most of 2016 trying to poison him out of existence. So instead of making reservations for us at a posh restaurant I will sit at my laptop and look back over the last 12 months:

After having what was probably the best year of my life (2014) followed immediately by what was indubitably the worst year of my life (2015), the year directly afterwards was always going to be a fairly middling period of time. It would obviously struggle to match the highs of graduating with First Class Honours the same summer as competing at the Commonwealth Games, but at least it was equally unlikely to get near the lows of being told I had inoperable cancer before the age of 25.

So, bearing this in mind, it was a shock to find myself rushed into hospital at the start of the year, resulting in a shunt being installed to drain any trapped fluid from my brain, in an effort to hopefully prevent any more emergency trips into neurosurgery. As a reaction to this incident I was quickly started on a course of chemotherapy, planned to last for nine months of the year, blood levels permitting. So far the year was starting nearly as negatively as 2015 had.

To add metaphorical insult to literal injury this also meant that I had to cancel my booked trip to go travelling and lose half of the booking fee in the process. A consequence made much easier to handle when I considered that a financial hit of just over a grand was nothing when compared to what could have happened if not for the competency of the medical staff and surgeons that has so recently saved my life.

Knowing I had to put any plans of travelling firmly on the back burner I instead focussed on creating goals that would be more realistic in the short term. Looking back now I can categorise a number of these simply under one heading: "Keeping my body fit and my mind keen". The first part of this was to rearrange my gym programme to make it more manageable throughout the times I would be dealing with chemotherapy fatigue. And so my thrice-weekly gym timetable was born. I decided to continue focussing on higher reps and hoping that the reduced load approach would minimise the fatigue while allowing me to still put enough strain through my body to minimise the loss of muscle and thereby keep me in shape that vaguely resembled that of an athlete. The second thing I did was to enrol on a beginners yoga course, hoping that the combination of gentle exercise and mindfulness would contribute to both of my targets.

While I was making these adjustments to my lifestyle and timetable Timmy was busy with some changes of his own, his diet of PCV Chemotherapy Cocktails was having an effect and in May I was informed that he had lost weight, resulting in a 3mm shrinkage. While this might not seem a lot, in percentage this represented 10% of his diameter so it was no insignificant amount. The year had swung closer to 2014 levels on the quality meter for the first time.

Unfortunately I was unable to keep this momentum going due to a series of low blood levels that forced chemo to take a number of breaks while we waited for the levels to recover. During this time I was contacted by representatives of Cancer Research UK who had read this blog and wanted to get me involved in the upcoming filming for Stand Up To Cancer. Over the coming months I was filmed on a number of occasions to get footage of many aspects of my life with cancer to show how it had changed when compared to my life before diagnosis. All of this culminated in an excellent filming night in London and I'm so proud to have been part of this event that raised millions for cancer research.

It was around this time that I had a few incidents that led to me reassessing my relationship with alcohol and coming to the conclusion that I was no longer enjoying getting drunk due to the increased effect it was having on me, as well as the impact this could potentially have on my parents. Since then I have experimented with different approaches such as reducing the units I drink on a night and restricting the types of things I drink. However after many such combinations I have decided that the only way to really manage is to stay away from alcohol completely in any situation other than when I was in someones house or surrounded by medical professionals such as at FYSOT.

As one final point to end I point out that I won't be making a New Year's resolution this year, but instead will focus on achieving the following at some point in 2017:
  • Stay healthy enough to go travelling
  • Find a way to get back training on the judo mat
  • Write more
  • Get back to a total of 8 visible abs
  • Get into a mindfulness routine
So there it is, 2016 in a page, not all great but definitely better than 2015. I want to say thank you to everyone that has been involved in making this year so much better than the last and hope for 2017 to be even better again. Happy New Year!



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.