Six Months On

This has been the longest period without a blog, that’s not to say I haven’t been busy, in fact the opposite is true. There’s so much to write I’m getting the daunting pre exam feeling of “I’ve got too much to do” where only sheer dedication keeps you focussed.

For the first time I went back and reread all the blog, it’s tough reading, I actually went through and edited some of the grammar. Although I’ve had compliments for the blog I don’t feel like a natural writer. When I first write anything it is usually grammatically incorrect and the text usually needs rearranging to give the text flow and a start, middle and an end. Nor am I a particularly fast writer. A good blog will take me about three hours. But please be rest assured, no news typically means good news.

I’ve now passed the six month point of Dabrafenib, I had two scans in a month. The first at the end of July was exactly what I was hoping for, stable disease, it was a fantastic moment. It’s always a relief because I feels it’s only natural to worry that maybe just maybe things are amiss.

Just prior to the scan I went for a wee, which did not go unnoticed by staff. I forgot, nor was I reminded, that I you need a reasonably full bladder for the scan, so I got put back into the waiting room and was forced to drink. Georgie, my girlfriend, gave herself the roll of pouring a jug of water down my neck. This compounded with he fact IV contrast* really makes you want to have a wee. This is a strange side effect, but for me it happens every time. The tidal wave down my body was yet to be absorbed before going on the tube to my friend Matt’s flat. By the time we arrived I couldn’t stand up straight due to the pressure on my bladder.

Following this I started at Kingston hospital, during the induction, while I sat there with the pointlessness of it all grating at my very soul, I started getting some right sided abdominal pain. Slight pain just a half out of 10, by this I mean 0.5/10, not realising I overly concerned Georgie who thought I meant 5/10. This niggle persisted for a week, despite ibuprofen and paracetamol, so I made an urgent appointment at the Royal Marsden, who scanned me the same day only 3 weeks after the last one. But to be honest I’d rather be over scanned and accept the consequences of radiation than be caught with my trousers down. Overall I’ll be very radioactive, if I survive, with or without extra scans. If the radiation then causing another cancer, it will be years on when hopefully we have cured this stupid disease.

The second scan came back with quite surprising results. It was reported that the tumors had shrunk a bit more in the previous three weeks. On a side point my Clinical nurse specialist highlighted in clinic that “the Prof thought we’d probably lose him”, at the beginning of this ugly saga. Not quite taking the CT report for gospel I asked to speak to the Prof himself, I needed to be scientific about it. It was quite a wait, but it was worth it. He arrived to “…every little thing is gonna be alright” (Bob Marley) blaring out of Georgie’s iPhone. He seemed equally intrigued by the report and we went to see the scans. Actually I was slightly hesitant because I hadn’t seen them yet and thought it would be awful. It was reassuring actually. The Prof got right to it, the benefit of being a doctor, although you wouldn’t need to be medically minded to work out that the first scan was grossly abnormal, cancer everywhere. The difference now is remarkable, truly, it was only with a trained eye that you coud still see disease. Overall actually it’s been a gradual shrinkage over the last few months as opposed to a sudden bit in the last few weeks. I had quoted that I had shrinkage of about a third to a half but looking at the scans this is clearly an underestimation.This is because the reports quote diameter of the lesions not volume, for those  mathematically minded this is to the power of 3. Assuming the lesions are spherical, which they are not, but for the sake of simplicity, we will. If the diameter is 6cm to begin with the volume is around 113cm(volume of a sphere 4/3XpieXradius3) if that shrinks by half to 3cm that’s only 14.13cm3or 12% o fit’s orginal size. The difference is so remarkable I had to check the maths a few times. Dad’s done it looking at whole picture and made an approximate figure of 88% shrinkage. I think we’ll say between 80-90%. Dabrafamiracle. Afterwards the Prof passed on my regards to my family, a true gent.

After a sports match you hear people say “yeah I’d taken that result beforehand” and that’s where I’m at. This is great news,  I don’t know how long it took for the cancer to grow and spread as far as it did but it does not happen overnight. This result is way beyond my expectations six months ago. As Dabrafenib efficacy wanes, which will most likely come at some point in the next six months (hopefully longer), this gives me time to get established on the next treatment without getting symptoms and becoming unwell.

There’s still so much to talk about.

The first https://www.justgiving.com/DavideBertone-marksims/

A young man, ran  a 10km run in 52 minutes, he’d had not done anything like this before and raised a lot of money for the cause. Davide was in the audience when I spoke at Westminster school and was inspired to get out there and help me out.

The TV programme, wow, what a response, what a great thing to be a part of. My personal highlight was Bill Turnbull saying my name on BBC breakfast. Being a part of the programme showed me how much effort goes into a TV documentary. The producer gave up most of his life to get the show out there. Rowena showed so much of her courageous personality throughout the show. I cried because well emotionally it took a lot out of me. They asked me whether I was happy with the footage when I went to Cardiff to see the draft. I was, because it acts as a record of how scared and frightened I was at that time, and how truly awful it is having cancer. The more we shout the sooner we’ll beat cancer. I was very pleased that some of my own footage made it into the show, from my holidays to Luxembourg and Malta, the producer had the pleasure of going through 35 minutes of dross footage for the only usable snippets. For example, the Malta footage was blemished with the other guys deliberately “product placing” obviously something that’s banned on the BBC. I spoke to the producer just last week and there is a plan for a follow up show, so watch this space. Furthermore, out of the hundreds of emails they received after the show, I had one marriage proposal!

I’ve also been on holiday again… twice. The first was a short trip to Nice, with three guys. It was a lovely place and packed full of great restaurants, great bars  and a decent beach, albeit pebble. It was difficult getting the holiday started as the French were doing what they do best… striking. The taxis were out in force against the introduction of Uber in their city. As much as Uber is taking over the world, if anyone hasn’t used it it’s just a much better way to order a taxi than before (please use my promo code for a free journey L3838). When we finally arrived at the hotel, something was quite strange, the architect had taken open plan to the ultimate degree with a shower literally in the middle of the room with both double beds facing  it. We had two days on the beach, one day in Monaco and one day looking around Nice. It was all very pleasant and very relaxed, each day, the one with immaculate hair. and I would compete to find ever better restaurants, so by the end we went to a Michelin recommended place which was quite simply superb.

The second holiday was to the Isle of Arran with Georgie. It is an island off the west coast of Scotland, nicknamed “Scotland in Miniature” due to it’s small size but dramatic landscape. I’d highly recommend it, despite it not being a well known destination to go to, especially for those of us who live South of the border. The reason for going was based on the principle that it would be nice to go somewhere beautiful and get lost. It was excellent. We hired a car at Glasgow airport , got a free upgrade to a Vauxhall Corsa, and then headed to a B&B on the coast. We took the ferry over the next day and headed straight to the island spa, for a head and back massage. Totally chilled out we napped in the rest room had some food then headed to our second B&B. We drove around the island at sunset which was past ten pm, after having dinner in a pub. The next day we hired bikes and cycled to Brodick castle, a Victorian highland escape, and despite wearing fluorescent cycling gear pretended we were lord and lady of the manor. Straight from there went to Georgie’s surprise trip, a forest safari  called “mogabout” we drove around in a large 4X4 bus (a converted Mercedes Unimog 16 seater vehicle) and guided by a proud Scot. It was a great way to see the island quickly. The trip ended at Giant’s graves where he got us using a native american technique, of one of his former customers, to sense the spirits. Obviously this tested my innate scepticism, but I went along with it. The next day the weather was looking ok so we decided to climb up Goat fell the largest hill on the island at 2800 feet. We were around 2/3 of the way up before it started hailing and got very windy indeed. Georgie was desperate to carry on, despite us both freezing in our inadequate cycling jackets. The scout in me overrode any other feelings and the unlikelihood the weather was not  going to get better anytime soon, I insisted we head down. The Saturday was a wash out and we drove around the island getting afternoon tea and popping in and out of the roadside attractions. The last day was sunny and we headed off to our own little beach, before we headed off the island.

Lastly, as of today, I’ve now finished my FY2. Finally, Annual Review of Competence Progression has been signed and I’m free of South Thames Foundation School. The last four weeks spent in Geriatrics was very good actually, it was ghostly being back at Kingston but I gradually acclimatised, I met with the specialist skin care nurse, who looked after me as a patient, in costa. It was a great way to reflect back on the past and put it behind me. It was nice to get to know her as a person, especially as she was there during such a difficult time. She told me she was proud of me, I reiterated how I thought she was such a great asset to the NHS.  I’ve been invited to speak at the conference of British Association of Skin Cancer Specialist Nurses, to talk about life with skin cancer and to write in a Journal.

So here I am, ready for the next six months. Treatment is working and has work well. There’s plenty of stuff lined up to continue spreading the message, plus a few friends and Georgie are running half marathons to raise money. I’ll be going on Safari with my Dad and Dave in South Africa, and most of all  I’m happy. For a man, with a four month prognosis without treatment, that’s awesome!

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3 thoughts on “Six Months On

  1. Great to hear things are going well. Glad you enjoyed your time in Arran. I was there in August and despite some mixed weather managed to conquer Goat Fell on a gloriously sunny day. Arran is indeed Scotland in miniature – the rest of the country is just as beautiful! Not that I’m biased, of course. Hope things continue on the upward trend. Have a great time on safari and say hello to your dad (aka King of the Hill) from me.

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  2. I just wanted to let you know that Dabrafenib has now been working for me for over 2 years, so you have a bit of catching up to do, but it gives you hope for the future. I was dx stage 4 in July 13 and have been on the drug since Aug 13 before it was even licensed! It’s great for us both and others with mm that there are now other drugs in the offing, so the future is looking good for a change. I due hope this drug does the same for you, so you can live life to the full. Good luck.

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    1. Hi thanks, it’s a wonderful drug, well currently there’s no sign of it stopping. Fingers crossed I have a scan a few days, so hopefully it will show that. Do you get any side effects?

      Cheers
      Mark

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