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 canapés 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.

Thursday 20 October 2016

Self Imposed Prohibition

Two days ago I received a phone call which prompted me to write a blog post earlier than I had planned. The call was from a doctor at Velindre who I hadn't met before, on behalf of my Oncologist who is off on leave at the moment. "I've been asked to give you your MRI scan results over the phone so you don't need to come into clinic", he said. "Okay, go ahead" I responded. "There has been another slight improvement". The words I wanted to hear. Chemo is still working and not only keeping Timmy under control but making him lose a bit of weight. I don't know the measurements this time as I haven't seen the scans, but any improvement, no matter how slight, is cause for celebration in my eyes.

"One other thing, in view of this your doctor would be happy for you to pause treatment and take a bit of a break if you wanted, it would be a good time for your trip maybe". Initially I was elated that she thought I was well enough to go away for 3 months, but upon further reflection realised this might not be the best course of action. If I left this week I'd be in places like Australia and New Zealand in the height of their summer as opposed to Autumn as I had originally planned for last year. The heat of Ibiza last year meant I had to stay in bed with a fan pointed at me at one point, so I think temperatures reaching 30 and above would be likely to cause me all sorts of issues. Plus it would mean I'd be away while technically still on chemotherapy, which would cause complications with insurance. Bearing all of this in mind I decided - as tempting as the suggestion was - to continue with treatment instead. If my bloods stay at acceptable levels I'll be starting course 5 on November 2nd and this will keep me on track to finish the 6th and final chemotherapy cycle two days before Christmas.

Now I've gone through the tumour updates I'm going to talk about a related decision I made a couple of months ago: To give up alcohol... Sort of.

This decision was brought on by a number of incidents recently where I've tried to have a normal boozy night out and ended up in a state that I've never managed to achieve in my life, even as a novice drinker the best part of a decade ago. I'd find myself going from sober to utterly gazeboed in no time at all and then doing a variety of stupid things. While this is something many people deal with all their adult lives, it has caused a load of worry for my parents when I get too drunk to contact them and it results in my 71 year old dad wondering around Cardiff at 4am having to ask random strangers if they've seen me and borrow a phone off police officers. This reduction in my ability to handle alcohol is probably down to the combination of not going out very often and the fact my digestive system has been battered about by chemo for a few months.

So because of this - and without going into too much detail about other nights where I've been rescued by friends who let me sleep at their mother's house, and times when I'm reminded about ridiculous decisions I've made by my friends for the next few weeks - I decided that I was no longer enjoying drinking to get drunk. Now, this doesn't mean I'll be going to extremes, I wont be avoiding situations where alcohol is involved and if the situation calls for it I'll have the odd bottle of lager. I just have to abandon my old strategy of drinking one drink and accepting my double vision until it came back after about 6.

In order to prepare for this I've been on a couple of nights out without drinking, to assess the best way to handle it. Luckily after a few years of working in busy nightclubs in Cardiff, as well as years behind my parents' pub bar, I've built up a decent tolerance level for drunk people and the way they act when I haven't had a drop myself. Both times I had a surprisingly good night without drinking, and think I'll be okay with this new arrangement, at least until I'm over all my treatment and can start to think about building up that alcohol tolerance again.

I'm going to get back to packing now, ready for our trip to London in the morning ahead of the live filming of Stand Up to Cancer in the evening.

Friday 30 September 2016

Standing Up To Cancer

As I wait for my final chemo tablets of the cycle I've been reminded that those who don't follow me on any social media won't have seen the message I posted this week, so here is a short post to update everyone:

Over the last couple of months Cancer Research UK and Channel 4 have been filming me and my family in order to contribute to a programme as part of Stand Up To Cancer. This has culminated in a short film that will be shown this Sunday during Bear Grylls' Celebrity Island 9pm Channel 4. So please watch and I hope everyone enjoys (for want of a better word) what has been put together by the team.

Friday 23 September 2016

A Break From Chemo in Corfu

A few weeks ago one of my Uni friends who is usually part of the Ibiza team mentioned that he was interested in going abroad somewhere towards the end of summer for a chilled out holiday, with the focus being set strongly on expending as little energy as possible and building up some sort of tan to take into the Autumn months back in the UK. This sounded exactly like the sort of thing I needed in between these cycles of chemo so I sent him a message and we decided to go into the travel agents with no plan and see what they had to offer us. As a result I made a trip to Cardiff and we went into Thomas Cook with the following brief: "Short holiday, no party islands, just a beach and a pool with guaranteed sunbathing temperatures". Half hour later we were leaving the shop having booked our trip: 5 days in a beach-side hotel in Corfu in September, just outside the high season.

So last Monday I was awake at 3am and headed for Bristol airport in an effort to make up for the typically appalling British summer by spending 5 days oiled up in the Greek sunshine. After a fairly standard couple of hours waiting about in the airport and boarding the plane we took our seats onboard the plane and were joined by a nervous looking man who, much to my annoyance, asked us to move along so he could go on the end. So I waved goodbye to my aisle seat (and the extra legroom that comes with it) and moved into the centre seat for takeoff. A short while later the seatbelt sign was turned off and our new mate got up and headed silently toward the back of the plane, never to be seen again. The mystery of the missing man bothered us throughout the entire holiday, and the only theory we can come up with for his disappearance is a Bond-style parachute exit through the back door.

After landing and collecting our luggage we headed out to the coach pickup area in search of the bus to our hotel. "Kavos is it lads?" Was the response we got from every rep we approached. "Hell no!" Came our response. As fun as I'm sure Kavos is, I'm not 18 anymore and was looking for a pensioner-style holiday involving less partying and more drinking soft drinks next to a pool. Having found our correct bus (as well as our fellow holiday makers who all seemed to fit the pensioner bracket we had expected).

Our hotel was a nice building, set among surprisingly green gardens, with a pool and a beach bar as well as beach sun loungers available for free to all guests. The beach this bar was attached to then spread a fair distance in both directions, adorned by a multitude of restaurants and beach bars, every other one advertising that they sold "The Best Gyros" in Corfu. Having sampled a gyros once on a lads holiday to Zante I was filled with excitement at the prospect of daily Gyros, especially as the hotel bar was selling one of the so called "best" gyros. I was to be left disappointed however when not one of these locations could live up to their marketing as the kebab meat failed to live up to UK standards, let alone Greek standards that had been set so high half a decade ago in Zante.

A few hours on from the gyros debacle I awoke to brilliant sunshine creeping through the balcony doors, beckoning us back out and into our first full day of Greek heat. We decided to skip the pool, as it had minimal early sunshine, and head behind the hotel and to the beach bar where we got two nicely placed sun beds on the beach, right by the bar. As I got a round of cokes in for us I asked the barman how you say "thank you" in Greek to be a bit more polite than just speaking in English all the time and, as a result, returned to the sun beds with two pints on the house as well as a new word added to my Greek vocabulary (taking the grand total up to three).

After a couple of hours sun-worshipping we decided that the best way to avoid the food-based disasters of the day before was to get away from the beach bars and head into Corfu Town itself. A half hour taxi ride later and we found ourselves in a typically Greek town with plenty of restaurants to try and find an acceptable meal at, as well as a backup McDonalds just in case the food proved as bad as we had experienced the evening before. Fortunately this wasn't required as the restaurant recommended by the taxi driver served lovely grub with the benefit of being near the pick up point to get back to our hotel. That evening, fully fuelled by some successful grub, we got to the beach bar just before the entertainment started and chose a table near the space that had been cleared for the dancers to use. This would come back to haunt us a few minutes later when they picked random people to join in the dances and we were both selected for the honour of making fools of ourselves in front of fellow guests. Luckily I was paired with an attractive brunette dancer for the duration (a combination of attributes that I have been known to favour in the past as it happens) whereas my friend was saddled with a portly greek lady, edging towards pensioner status.

On our third day we decided to investigate the water sports that were available just around the bay from the hotel and, having perused the options, we decided to go with parasailing. This gave me a chance to break out the GoPro for the first time and get some shots of the picturesque scenery as well as some unflattering shots of us crashing into the sea from a height. After an exhilarating ten minutes of parasailing we swam/limped back around the beach to our towels as somebody had come up with the bright idea to walk to the water sports place without our flip flops on a beach made up mostly of razor-like rocks and pebbles. When we got back to the sun beds a couple of British girls had parked nearby and were struggling through a crossword and were stuck on the following: 9 Letter word, begins with the letter P, clue: "supporter or follower of a cause". I'll leave you to think about it for a while before I post the answer. Fortunately what the girls lacked in crossword ability they made up for in local knowledge, and as a result they pointed us towards an area away from the beach with more restaurants to try, meaning that night ended with a succulent fillet steak as opposed to a dodgy lamb kebab.

The View From Up Above

Mac and Jones Flying High

After the experiences of these first three days we were fully prepared for our last full day in Corfu. We knew to wear flip flops to walk around to the water sports for a trip out on some inflatable seat contraption; we knew to avoid gyros by heading back to the nicer restaurants off the beach; and importantly we knew which seats to avoid if we didn't want to be dragged onstage to join in with the greek dancers that were the final nights entertainment.

Due to the numerous delays I've had in my chemo I returned to the UK just before a planned blood test to check my eligibility for chemo to begin a week later. Fortunately this time my platelet levels had risen way back up to where they should be, enabling me to begin cycle 4 of 6 of my treatment and prompting my oncologist to recommend a holiday before each blood test.

So there we are, NHS prescribed holidays. I can live with that. Now just to get them to pay for it too.

Post Scriptum
Once again, this trip would have been impossible without the help of InsuranceWith who provide affordable travel insurance for many people with pre existing medical conditions, such as cancer. In honour of this please click here to vote for them in the British Travel Awards:

Oh and the answer to that crossword question? Proponent. Did you get it?

Thursday 18 August 2016

Gaps In Treatment Filled By The Teenage Cancer Trust

Since my last blog I have been able to have one more cycle of chemotherapy but have also had a second one delayed a couple of times due to low blood test results. Although this has meant a delay in my treatment it has also meant I have been able to attend a number of Teenage Cancer Trust events without having to worry about the increased tiredness and increased susceptibility to illness that comes with being on a chemo cycle.

Firstly I had a place on the Ellen MacArthur Cancer Trust trip, which would see me spending a few days helping to sail a yacht around the Isle of Wight. We began by travelling to Southampton and boarding a ferry across to Cowes on the Isle of Wight where we met up with representatives of the Trust who led the way to the Trust base for some introductions and team building exercises.

There were groups of young people from a number or areas of the U.K. which, like 'Find Your Sense of Tumour' last year, comprised people at various stages of their treatment for a variety of different cancers. Over the next three days we spent time being taught how to sail by being shown, amongst other things, how to raise and lower the sails, how to steer the boat and how we should conduct ourselves and position our bodies while out at sea.

After a day of sailing we would dock and were free to mix with the other boats to socialise with the other young people over increasingly tense games of Uno. I'm still reeling from a game on the first night where the girl to my right viciously lined me up with a number of 'pick up 4/2' cards just when I thought I was in with a shot of winning.

On one evening we anchored at an island that had been prepared for a group BBQ and, after a spin in a speedboat on the way there, all boats joined together to eat and chat. However, what we hadn't prepared for was the bug swarm of biblical proportions that surrounded us as we began to eat. If there ever was guaranteed way to ruin a burger, the risk of ingesting little flying creatures on every bite was it. Having said that, it was a highly enjoyable few days that I would recommend to anyone given the opportunity to go.

A few days after we returned from the Ellen MacArthur trip another event had been arranged by the Cardiff Branch of the Teenage Cancer Trust, a trip to the Cardiff Bay Glee Club. I was massively looking forward to this as I'm a big fan of stand up comedy and haven't got anything against free food either. I met up with the rest of the group outside the club and, after a bit of Pokemon catching, we headed inside to find our table and seats. The evening would involve three comedians as well as the compère entertaining the audience in between the acts. As part of the compères routine we were encouraged to tweet them throughout the show so that they could respond when they were on stage. Not needing much of an invitation I got my phone out and proceeded to see if I could 'poke the bear' and get one of the comedians to make some cancer jokes with the following tweet:

The Tweet That Got Us Roasted

I wasn't sure I had succeeded until we got close to the last comedian of the evening. In the gap before the act was introduced the compère began to go through tweets he had received, inevitably stopping on mine. I had been fairly confident of getting a mention as my Twitter profile practically invites abuse with my profile picture and the blue tick. As expected this was the angle the compère took to begin his roasting of me. What I had never noticed before was the exact angle he would use by pointing out the similarity of my profile photo to a famous image from the 90s. I'll put both photos below and you can judge for yourselves whether he might have had a point or not:

I Have No Idea What He Was On About...

As the accompanying music died down he asked who we were exactly and, in fairness, remained pretty confident as he continued the roasting, knowing that we were with the Teenage Cancer Trust. Although the crowd did take a second to assure themselves we were laughing and not offended before laughing at the cancer jokes themselves.

At the end of the evening a prize of four free tickets was to be awarded to someone that had filled in a competition slip on their arrival, however the girl that won hadn't stayed until the end so the comedian said "fuck them then, we'll give them to someone else", deciding to pick someone who had tweeted in instead. When he opened up Twitter my profile was still on the screen and he said "actually, shall we give them to the cancer guy?". Most of the crowd applauded this and I was given the prize of a free ticket for four to the Glee Club Cardiff. "Wait a second", the compère shouted, looking in detail at the tickets, "These tickets have a November date on them, how long do you have?". Every one of us with the TCT fell about laughing, followed a split second later by the rest of the crowd.

Since that day I have once again faced a double delay in chemo that will hopefully come to an end the week after next (blood count permitting), allowing me to begin cycle four of six and stay on track to finish treatment before the end of the year.

Friday 17 June 2016


I ended my last blog post by saying that my chemo had been delayed because of a chest infection and expected this post to be about how I'd started back on chemo a week later, however things haven't quite gone to plan. After my initial week long delay I returned to Velindre for my pre-chemo appointment which included having my bloods taken to check various levels were appropriate for the start of chemotherapy. As it happens my white blood cell level was a little low (the benchmark level to start chemo is 100, whereas I was sitting at 96), meaning that I would be facing a further week long delay in the start of chemo. I was however quite thankful for this as it meant I would be able to have a drink at the two Teenage Cancer Trust events that I was attending that week.

The first of the events was a trip to the Motorpoint Arena in Cardiff to see Busted live. They were being supported by Wheatus who transported the entire room back over 15 years when they smashed out Teenage Dirtbag and A Little Respect. I would've been happy enough if the gig ended there and then, but there was more to come as Busted appeared and made the life of 11 year old me by busting out all of their classics from the naughties.

The following night the TCT had a cocktail masterclass planned in the Sports Bar attached to Bierkeller Cardiff. This made me especially glad for the chemo delay as making a bunch of cocktails only to give them away to everyone else didn't strike me as the most fun way to spend an evening. As the only member of the group with years of bar work experience I was first up and managed to not embarrass myself despite the weakness in my left side that very nearly resulted in a smashed cocktail glass and strawberry daiquiri everywhere.

Having recovered from my night of steins and cocktails I received my latest blood results and found that my white cell level had dropped further to around 48, meaning a further week long delay to give my body a chance to recover from the chest infection before blasting it with poison.

During this third week long delay I had a text from the Cardiff TCT organiser asking if I wanted to go on a trip with them in conjunction with the Ellen MacArthur Trust. Due to this I'll be pushing my chemo back a further week to enable me to spend part of next week sailing around the Isle of Wight with a group of other young people affected by cancer. Hopefully my blood levels stay up where they should be so that I can get back onto chemo the week after and get to work on shrinking Timmy even further.

Wednesday 25 May 2016

Even Tinier Tim

Last week was a week of appointments, which saw me in Velindre three times with a trip to the dentist thrown in the middle for good measure. Over the last year or so my dentist has been reluctant to X Ray my mouth for fear of introducing extra radiation into the head while I'm undergoing treatment. This time, having the Velindre appointment so close to my dentist appointment reminded me to ask the oncologist whether that was necessary. The answer to that question was in simple terms, no. More specifically, the amount of extra radiation from a dental X-Ray is negligible. However, any dental treatment would be advised against while I'm on chemo due to the increased risk of infection and, as a result, there probably wouldn't be any point in introducing the extra radiation into the area when no action can be taken regardless of the results.

Following on from my dental check up I had my first trip to Velindre of the week for my first MRI scan since chemo began. I followed my standard procedure and turned up after minimal sleep so that I could try and kip through the scan, but didn't quite manage to drift off amidst all the bleeping and whirring reminiscent of R2D2 and Mrs R2D2 caught in an intimate moment just outside the scanner.

Two days later I was back in Velindre for a pre-chemo check up. I was weighed and found to be down to only 64kg, which is something I need to address as that puts me at a stone lighter than when I was diagnosed. Fortunately all that means is I need to increase my calorie intake and time in the gym, which I'm more than happy to do, doctor's orders or not. Because I wasn't seeing my usual oncologist as well as it only being two days after my MRI I wasn't expecting any results and so was surprised when the doctor began the appointment with "So shall I start with the scan results?".

Slightly wrong-footed by this surprise I mumbled something in the affirmative and he began:

"Well it's shrunk"
*Shocked silence*
"It's shrunk?"
"Yes, do you want to see the scan?"

He showed me the scan and, sure enough, the tumour had shrunk yet again. From 28.6mm at my last scan down to 25.5. This is a total of nearly 7mm from what it was when it was first discovered, all those months ago, which works out as roughly a 1/5 reduction of the diameter of the tumour since treatment began. So regardless of what else is going on the radiotherapy/chemotherapy pairing seems to be working at the moment.

Bearing this in mind I was positive en route to start my latest course of chemo a couple of days ago. However a chest infection has come along as a bit of a spanner in the works, meaning my chemo start date has been pushed back until next week. Looks like I'll have something to blog about sooner than I expected.

Monday 4 April 2016

The Chemo Begins. Again.

Since I last blogged I have had the first of six chemo sessions to come over the next 9 months. As I mentioned previously, this began with an intravenous drip in the hospital before a course of tablets to be taken at home as before.

On the day of treatment I arrived at Velindre and was directed to a part of the facility that I was unfamiliar with for a change. On entering the Chemotherapy Outpatient Unit the first thing I noticed was how comfy the chairs looked. But if you're going to have people sat about having poison pumped into their bodies I suppose the first step you take is to at least make the chairs they're sat in comfortable.

I was directed towards the back of the room and into a chair of my own. If it wasn't for the attached IV drip I would happily have one of these chairs at home, right in front of the TV.

To begin with my arm was submersed in warm water to bring out the veins as much as possible. Due to my abnormally high level of everyday vascularity this is something I've never experienced before, but I suppose I must have been having a bad vein day that meant they needed a little help finding the right vein for the job.

Once I was attached to the drip a bag of saline solution was attached to the other end to keep the vein open while the chemo drip was prepared. Other than a chilly sensation where the solution entered the vein this part of the process had little measurable impact on me, as is to be expected.

The chemotherapy drip itself came next and was over surprisingly quickly, taking little over five minutes for the bag of liquid to completely empty into my system.

I was then provided with my party bag of chemo tablets to be taken over the following week on an alternating schedule of 4 tablets one day and 3 the next.

I'm pleased to report that during the week itself, as well as the days that followed, I experienced very little in the way of side effects. I was a bit more tired and lethargic than usual but had no sickness to report. I'm currently waiting for my second cycle to begin but do have a week left to go before that comes around. Hopefully this first cycle will be a sign of things to come and I'll be able to train through this entire period as well as a couple of trips away to escape the monotony of home.

Saturday 27 February 2016

Guess Who's Back, Back Again. Chemo's Back, Tell A Friend

After another appointment at Velindre a few days ago I've been informed that, although the tumour appears to be stable, the fact that there was clearly some activity that lead to my recent admission to hospital means the oncology team are inclined to believe I would benefit from having further treatment sooner rather than later.

As a result I will be beginning a course of chemotherapy on Tuesday. This will be different from my previous chemo as it will involve a combination of tablets and IV drip, whereas my previous chemo has all been in tablet form. This method of chemotherapy is called PCV (Procarbazine, Lomustine - known as CCNU, Vincristine) and will consist of an intravenous drip on day one of each treatment cycle followed by 10 days of chemo tablets. I will then wait until six weeks from the injection date for my next cycle to begin, and I will be having a total of six cycles.

As the mathematically astute amongst you may have realised, this means that I will be under treatment for a total of roughly nine months. After nine months of sickness, scans and hospital visits I'm half expecting to give birth to Timmy at the end of it all, although I have a feeling he'll manage to hang on in there like some sort of annoying, life threatening, brain dwelling embryo.

One small mercy is the fact that this type of chemotherapy does not usually result in hair loss, although it will likely mean a return to the sickness and sleeping problems that I so enjoyed last time around.

In other news the stitches in my stomach have finally dissolved and I'm expecting imminent delivery of a bunch of Bio-Oil so that I can start working on minimising the visual impact it will have on my abdominals.

This does also mean that I won't be able to go on my trip until at least this time next year. If it's true what they say and good things really do come to those who wait then it should be absolutely unbelievable by the time I eventually manage to go.

Monday 15 February 2016


Since my last post I'm glad to say I've left the hospital behind, along with the dreaded catheter and cannula that they had installed during my stay. While I'm on that subject,I don't know about you, but I had always assumed there was some clever way of removing a catheter involving special valves or a clever twisting manoeuvre, this assumption was shattered into a million pieces however when the time came to have mine taken out. Instead of some clever manoeuvre the approach turned out to have a lot in common with the process used when starting up a troublesome lawnmower, which as any males reading this will attest, is not a particularly welcome way to treat that part of your anatomy.

In the time since I'm glad to say the jaundice and bruising my arms were displaying has all but vanished and, as a result, I'm looking fairly normal, especially after I had an emergency procedure on my haircut to restore some order to the top of my head after my latest brain surgery partial head shave.

Despite having my head and stomach cut open as part of the shunt fitting, the biggest down side of this latest stay in hospital was having to postpone my travels. Working my way through all my hotel/hostel bookings and clicking cancel on each was nearly as painful as the moment the catheter was yanked out of place a few days earlier.

Due to this unexpected visit to hospital my Oncologist arranged a new MRI scan to take a look at the tumour and assess the situation now the shunt has been fitted. Once again I didn't follow my own advice and neglected to make sure I was hungover enough to sleep through the scan. Instead I lay there in the machine, wide wake, listening to noises reminiscent of how I imagine it would sound if R2D2 got stuck in a blender for half an hour.

Following the scan I asked if there was anyone that could take a look at the stitches in my stomach, as they didn't seem to be dissolving very quickly and the wound looked quite aggravated and red. There was a nurse available and she came to give her opinion on the wound. She was followed by another three nurses who came for a browse at the stitches when they heard rumours of abdominals being displayed, so at least I know my stomach won't be completely ruined aesthetically by the scar I'll be left with when the stitches eventually dissolve.

I've now had a phone call off my oncologist stating that there doesn't seem to be any significant change in the tumour, so at least the latest episode was not caused by a flare up of growth in the tumour but more likely by smaller changes that happened to be in the exact place the fluid was trying to drain away. Although I still need to wait to find out if any immediate treatment will be recommended after discussions between my oncologist, the other specialists in Cardiff and the specialist from the Royal Marsden in London.

In other news Piri must have been feeling left out and decided she was due a trip to hospital herself. We noticed a problem where her eye was watering a lot and took her to get it looked at. At the vets we discovered she had an ulcer developing in her eye and she needed a temporary lens fitted as well as medication and eye drops. So in the house at the moment we have two of us convalescing but obviously priority goes to Piri as she's far cuter than I am. Especially with her cushion secured around her neck.

A photo posted by Piri (@pirithepug) on

Monday 1 February 2016

Heath Hospital Revisited

If you had asked me 10 days ago what my next blog post would be, I would have said something along these lines: "it will be a post just before we board the first flight on our 3 month tour of the world". It definitely wouldn't have been "it will be from a hospital bed, having been admitted for emergency brain surgery", yet, here we are, it is the first day of February and instead of getting ready to fly across the world I'm sat in the Heath Hospital with a new hole in my skull to add to the ever-expanding collection.

This story begins last Monday with my final memory of the event: Telling my mother that my eyes were really hurting, and not in a way that suggested eyesight issues, but in a way that suggested the tumour was awake and wanted to escape from my skull, preferably through my eye sockets.

From here I have to rely on accounts from my parents, as my memory of it all is worse than it would be after 12 pints with jäger bomb chasers.

Apparently the pain got so bad I was screaming and shouting in the house, so my father phoned an ambulance. Unfortunately, the dispatcher seemed more concerned that he check me for signs of a stroke than sending assistance, so my father put me in the car and drove me to the nearest hospital (the Princess of Wales in Bridgend) where I was put in an ambulance and blue lights shot me up the M4 to Cardiff's Heath Hospital. By this point I had slipped into unconsciousness.

I was taken straight into emergency theatre (of the surgical, not musical, variety) where I was operated on to relieve the pressure that was building on my brain. Some of you may remember I previously talked about how a surgeon had made a channel in my brain to allow fluid to drain away naturally, well that had become blocked, meaning the high volume of extra fluid produced by the tumour had nowhere to escape, and as a result was causing immense pressure to build inside my brain. To combat this the surgeon fitted a device called a shunt which is basically a tube that allows the fluid to drain into my stomach to be digested, thereby relieving the pressure on the brain.

My first recollection of hospital is waking up a day later and realising two things: One, I was definitely not where I last remembered being conscious; and two, something very serious must have happened, and I'd put money on Timmy being to blame.

Shortly afterward I made an attempt to sit up and was greeted with pain across my stomach, which under further investigation was revealed to be due to a surgical incision as part of the shunt installation process. I haven't seen the scar yet but know it will forever be a blemish on my otherwise perfectly symmetrical, and as far as I'm concerned aesthetically pleasing, abdominals.

Unfortunately I also made another discovery fairly soon after waking, the presence of a catheter inserted in a location that is only meant to be treated nicely. Despite my best, and continued, efforts to get it removed it has remained in situ and will do for the foreseeable future.

On my second evening in the hospital I was in my 3rd ward of the stay and made a troubling discovery when I looked to my left to see the man in the next bed watching a film that is less than appropriate in a communal sleeping setting. To sum up, the movie featured blonde beehive hairdos on the females and plenty of fake tan on the males and the central theme seemed to lack the finesse of even the most poorly planned home videos. I have since heard from other patients that he's been caught getting a little too in to his material on occasion though, so I count myself lucky that all I saw him fiddling with was the settings on his iPad.

Other than this one entertaining (if slightly disturbing) episode my stay so far has been fairly standard and comprised mainly of pain and awkwardness from the catheter, interspersed with visits from friends and family. If I have one piece of advice to give anyone about to get a catheter fitted it's this: Run. Get out of there while you still can! I've been in a constant state of irritation and mild pain since it was fitted nearly a week ago. Thankfully the visitors have helped me keep my mind off the annoyance of the catheter while they're here by keeping me distracted and even after they've gone with gifts strategically designed to chip away at my abdominal definition (I'm looking at you Angel Cake Slices). Accompanying the calorific presents a theme has developed with people buying me colouring books. I now have both Lion King and Harry Potter themed colouring activity books and the pencils to accompany them. As my art teacher in school once labelled me a "disgrace to her profession" I'm not sure how well I'll do with them but I'm sure it will at least kill some time.

I have been told this evening that I may be freed of the dreaded catheter tomorrow, so tonight I shall dream of a world where a penis is free to swing in the breeze should it wish to do so and urination does not require a bag to be tied to your leg. A happier world. A simpler world. A less painful world.

Wednesday 6 January 2016

My First Anniversary With Timmy

So 2015 is over. To begin with it was a year that promised so much for me. I had a great job, I'd just bought a new car and I was enjoying training with the goal of gaining a bit of mass and not having to worry about qualification points or unexpected injuries. In summary, everything was going according to plan and I could look toward the future and enjoy having expendable income for the first time, after years of living as a student athlete.

Unfortunately this optimism was shattered just six short days into the year, exactly one year ago today, on a day the doctor accurately dubbed 'the worst day of my life'.

Since then a lot has happened and a lot has changed. First of all steroids made me swell up to an all time high of 75kg. Then, to make matters worse, photos were taken of me in a state of chubbiness that would continually resurface and haunt me over the following months. This brings me nicely on to a factor that has had a large impact over the year, the interest of the media. Due to the initial success of this blog and my recent past as a judo player a number of media outlets from the UK and further afield got in touch to tell my story and, by extension, help raise awareness for the condition and funds for my travels and for research into Brain Tumours. On the subject of research I was lucky enough to be invited to see first hand the cancer research that is being done at Cardiff University and to talk to the researchers about it all and what they hope to achieve.

Following on from my steroid induced weight gain I went into treatment and experienced 30 sessions of chemoradiation followed by six months of chemotherapy. This led to me losing not only all of the steroid weight (and then some) but also a fair amount of my hair, and began the months of baldness and the cold head that comes with it.

As the saying goes "every cloud has a silver lining', even a cloud as large and grey as this one. Throughout the year, despite the repeated incidences of bad news and evenings being sick into a bowl, there have been positives to take the edge off. I have been able to get away on holidays to Barcelona, Portugal and Ibiza during gaps in treatment in an attempt to keep a bit of colour. A number of charities have also been able to offer me benefits ranging from financial help to a free iPad. On a more personal note the down side of having to move home has had the benefit of allowing me to spend more time with my family because, and this may surprise you, living back with your parents means you see a lot more of them than when you live 3 hours away.

On a similar note this last year has proved to me that I have excellent taste in friends. Whether I know them from school, from judo, from University in Plymouth/Cardiff or from work they have been uniformly supportive. Be it through messages of support, fundraising for my travels/a charity of my choice, lifts around the place or simply getting me drunk to take my minds off things they have helped enormously and I can't thank them enough. The cancer diagnosis has also led to me meeting a whole new group of friends that are having the same experience at a young age.

One very important moment of the last year was of course when I became a father. An adopted father to my little Piri Pug that is. The decision by my parents to surprise me with her in an effort to cheer me up has proved an excellent one, as it is genuinely impossible to be sad when you have a pug sat on your lap, snoring away as she is doing at this very moment.

A final note goes out to everyone that has read, commented on and shared this blog. It started as a way to keep my treatment and diagnosis news away from Facebook to avoid forcing it upon those that weren't particularly interested. Since then it has grown into a vehicle for positivity and information that has been viewed just under 1/4 of a million times. For me it has been a way to organise my thoughts after tough appointments with the doctors, as well as a tool to keep everyone in the loop as I go through this journey. For others I am told it has been a way to help explain what is happening to my younger family members, a source of information and guidance to others who are about to go through everything I have been through and, perhaps most importantly, an interesting - and hopefully, entertaining - read.

So thank you to all those that have helped me this year. My approach to dealing with this cancer has been, and will continue to be, positivity. Nobody ever achieved anything with negative thoughts and pessimism. Don't get me wrong, there have been some very dark moments in the last 12 months, but you just have to indulge them for as short a period as possible and get back to thinking positively. Here's hoping for a breakthrough soon so that I no longer have to regard the 6th of January as mine and Timmy's anniversary and can instead get to thinking of it as a day where I finally get round to assessing the financial damage that has been caused by a cancer free Christmas.

Saturday 2 January 2016

Finding My Sense Of Tumour

I've been a bit slow on the blogging front since my birthday, partly due to general laziness and partly due to the demands of the festive season (specifically the many extra nights out that happen this time of year), but as my Christmas present off my parents was an iPad keyboard case to keep me blogging on my travels I had better give it a whirl.

The topic for this blog harks back to before my birthday, and to an event organised by the Teenage Cancer Trust that I attended in the middle of November. Find Your Sense of Tumour is a conference split into two weekends, one for under 18's and one for those between 18 and 25, I obviously attended the latter. This year's event was held in Center Parcs Nottingham and, as no group was going from Wales, I travelled up with the South West group which encompassed Bristol, Taunton, Exeter and Plymouth.

My first challenge of the weekend came on Friday morning as I was required to wake up before midday, a significant challenge with my current sleeping pattern. Having woken up we travelled to Bridgend to pick up the new TCT officer for Cardiff who would be joining us and then on to Bristol. We were to meet the others at a pub just off the M5 where we would board the bus to Sherwood Forrest. While at the pub I made what would become a massive error in judgement, I had a glass of Coke and a cup of tea.

A couple of hours and half a dozen traffic jams later we were on a slip road off the motorway when my chemo blasted bladder decided to make me pay for my decision in the pub. I judged how far we had to go to get through the lights at the top of the slip road and guessed I'd have enough time to answer nature's urgent call. So, I disembarked the bus and started to empty my bladder at the side of the road, much to the amusement of the people in cars slowly trundling past. But, as I've mentioned before, since chemo I've developed a bladder capable of producing inhuman amounts of urine, and as I looked up at the bus and it's proximity to the traffic lights I started to worry, I was only three green lights at best away from being stuck on the M5. After two complete loops of lights I managed to cut the flow mid-stream and started sprinting up the middle of the road towards the bus, which was parked at the very front of the queue of traffic and was ready to go whether I was there or not. To add a bit of extra drama to proceedings the lights started to change just as I arrived at the bus door and jumped on.

We arrived at Center Parcs without further incident and settled into our cabins. I shared mine with a guy my age who was originally from Moldova that had suffered from Testicular Cancer and a 20 year old lad who was far more nimble that I thought possible for a man who'd had one leg amputated as part of his treatment. The first night was devoted to a welcome chat, food and then just general socialisation, which of course involved numerous beers. This gave me a chance to catch up with a girl who I've been speaking to via Facebook for a while who has the same tumour as me just on the other side of her brain, as well as meeting some of the others with her from the Birmingham area.

The next day was the start of the conference proper with the day starting at 9am and running until 2.45pm with breaks for lunch and coffee in between. The talks ranged from lecture style presentations to interactive sessions where the attendees could respond via interactive handsets and were almost always very entertaining and engaging as well as informative and relatable.

In the afternoon however I chose to leave the venue and head to Cafe Rouge on my own to get a break from the food that was provided with a steak and chips. The reason for this was that the theme of the talks was Body Image and Self Esteem, and as anyone that knows me will attest, I have very little need for help in that department, if anything I probably need to reduce it a bit.

Following on from my steak intermission I had a booking to take advantage of the free massage therapies available, which gave me a chance to have a giggle at the reaction I get whenever anyone tries to massage my shoulder and finds a collarbone in the wrong place. This was definitely one of the main things I was looking forward to before the weekend and it did not disappoint, I was relaxed and spaced out for a good eight to ten hours afterwards.

That evening was the Talent Showcase where groups and individuals from each of the areas competed to win one of the Oscars up for grabs on the final night. As you would expect the performances ranged from hilariously bad to surprisingly good and involved everything from dance to comedy. It was a nice change from the talks of the day and was a great backdrop of entertainment while everybody got on the beers yet again. Although I do feel like they missed a trick by not calling it "Britain's Got Tumours". Maybe I'll suggest it for next year.

The next day was the final day of the conference, and featured my favourite session of the weekend: The Eulogy of Toby Peach. The Eulogy was a one-man show that told the tale of Toby Peach and his admission to The Cancer Club and the events that followed. If you get the chance to see it I couldn't recommend it more, it was not only entertaining and funny but it was relatable to each and every young person sat in the audience who has been through a similar thing themselves.

The other notable moment of the day for me was my first introduction to a concept that I was previously unfamiliar with: Chemo Brain. Chemo Brain (also known as Mental Fog or Mild Cognitive Impairment) is a condition often encountered after cancer treatment - not just chemotherapy as the name suggests but also radiotherapy and even surgery - whereby your cognitive process can be impaired. This can lead to memory problems, issues with concentration and generally affect the way your brain operates. As soon as the condition was mentioned it was like a lightbulb turned on in my brain and suddenly the previous six months made sense. I had experienced forgetful patches consistently as well as having trouble with co-ordination a lot of the time. I had put it down to my double vision (well the co-ordination at least) but now I had a real explanation that made sense. Chemo Brain.

The evening brought a farewell firework display, followed by the Oscar presentations and a Fancy Dress Party. The theme was Film and our area all went as Spartans from the movie 300, which turned out to be an excellent choice as the room the party was in was roughly the same temperature as a blast furnace in the summertime. Although I won't lie, walking from the lodge to the venue in a spartan skirt while it rains is less than ideal. As the drinks flowed some dangerous shapes were dropped all over the dance floor and my extensive knowledge of the words to Frozen shocked pretty much everyone, then the DJ announced the last song and we headed back to our respective lodges, not at all looking forward to the hungover trip home the next day.

Thankfully the trip home didn't involve me getting stuck on a slip road while desperately trying to finish the worlds longest piss.

Overall the Find Your Sense of Tumour weekend was a really enjoyable and informative experience where I met a bunch of inspirational people who all had a common link yet at the same time each had their own story of how they had dealt with cancer at a young age. The only slight criticism I have is that it is geared mostly towards those that have been through cancer and are cured or in remission, and as such it could do with slightly more for those that are still dealing with the disease.