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Blog Post - The Switch and Call to Arms!

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  Blog Post - The Switch and Call to Arms! Long but important post, I would appreciate if you gave it a full read. Me and my amazing sister enjoying the sun The first few weeks of lockdown I was floating nicely through the time by staying busy and upbeat. It was easy, idyllic and probably not too different from anyone elses unless they are on a mission to teach themselves Mandarin or in the habit of cracking open a beer at 1pm. In many ways you can’t beat the pure liberation of being able to wake up when you want, having few plans set in stone and being able to do whatever you want with the time you have. Over the last couple of months, though, my energy had dropped and I had started doing less. It might have been due to boredom, situational fatigue or being stuck in my head more than is healthy. However, it was undeniable that my physical symptoms were no longer slowly creeping up on me. I look drastically different and have lost a lot of weight. A lot. A 20 minute aggressive coughing
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Coughing my way through Covid

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Back in the motherland I’ve had a cough for around six months now. It was fairly innocuous - the kind of cough most people have in the UK in the winter. A few times it’s been a bit more than that; whilst I was in America in February I had a couple of days of pretty bad coughing fits, but thankfully they resolved themselves. Over time, though, the cough has got progressively worse. It is more consistent now and the fits have become more regular. My breathing has also become slightly more laboured. Occasionally there is a wheeze on the in breath. When I’m walking and have a brief spurt of heavy coughing, I feel eyes on me accusing me of not locking myself away. I would love for this to be a mild case of Covid (so long as it doesn’t get any worse of course), but I'm accepting that I am no longer asymptomatic.  I’ve said previously that the disconnect between feeling fine whilst getting very negative scan results was something I was struggling with a lot, as it made my situa
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Accepting Terminal Illness

How do you truly accept that you are going to die? When I was first given the diagnosis, in what feels like the start of a second life, I found it almost impossible to concentrate on anything other than cancer and death. It felt like I was having an existential crisis. I was getting by minute by minute, hour by hour, and my mind felt like it was melting as I tried to contemplate the unfathomable. The bleak statistics were constantly going around my head. Less than 10% of people in my position live more than 5 years. The most (and only really proven) effective treatment has about a 30% chance of being effective at keeping the disease stable. Even with it, median life span is about 18 months. With everything else going on - a constant stream of hospital appointments, telling people what was happening, and dealing with the fallout in other parts of my life - it was a lot to get my head around. But I was treating it like a death sentence, and started reading what I could about termina
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Isolation

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The view I'm stuck with from my flat It seems we all have an interesting few months ahead.  Three weeks ago, after a pretty miserable few weeks in the UK, I decided to get away. Partly because I wanted to try and have a break from the routine of hospital appointments and give myself some space to breathe from everything going on here but mostly because I love travelling and seeing the world. Just seven days ago I was in a bar in Medellín, Colombia. Knocking back shots of their evil spirit, aguardiente; dancing non-ironically to reggaeton; and generally having a great time. The dark clouds of coronavirus were looming heavily overhead, making all the foreigners pretty nervous about travel plans, but in that moment life felt normal. Arriving at Gatwick on Tuesday, into what is the worst global crisis we’ve had for decades, it really felt like stepping down from the plane into a dystopian future.  The current situation will affect people in different ways. For some, be
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Breaking Health News (not involving coronavirus)

Quick scan update from about an hour ago. It showed progressive disease. The tumours have grown between 30-50% since November, the largest being about 10x6cm (previously 7x4cm) in the surgical bed. There are new tumours in both the lungs and lympth nodes but nothing new anywhere else in the body and nothing likely to be causing me any physical problems at the moment other than general disease burden e.g. tiredness. Disappointing, but it was never that likely this chemo would do much so I'm not surprised. My mitotane is dropping but still not close enough for getting on the trial in Germany any time soon. The next plan is to see about clinical trials, speak to the US team about radical surgery, and get a second opinion from a team in Birmingham who are a bit more specialised. It may be because I have only just had the result, but I feel fine. My mood has leveled out recently and im seeing every day as a bonus. I'm looking forward to not being on chemo and being free from ana
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Emotions Update

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Last summer, when the scan showed the treatment wasn’t working, I felt like I needed a break from it all. As well as any treatment, I also decided to stop with the sleeping pill (temazepam) and antidepressant (sertraline) that I had been taking since I was diagnosed. I no longer needed the sleeping pill and wasn’t sure that I had ever needed the anti-depressant. The internet warned me this would be hard. Many websites said coming off temazepam was seen as harder than coming off heroin and that it often requires rehab, or at the very least having close supervision by a doctor. Always one to overestimate myself and not one to back away from a challenge, I figured it couldn’t possibly be that hard and started tapering off both, very slowly, without medical help from early September until late December. It will be impossible to articulate the last four months of emotions and put them in to one blog post so consider this a very long snippet. To say that it hit me like a truck doesn’t
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Medical Update

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This is a purely medical update because my emotions have been all over the place in the last few weeks and I can't be bothered going in to that in this post. Mid-November I saw an new oncologist who was recommended by one of my other doctors. He looked at me and declared almost immediately that he thought a mistake may have been made based on the fact that I walked into the room looking as healthy as the next person on the street, and because my previous scans (from July) might have been jumped the gun in suggesting treatment wasn't working. He thought there was a possibility that the disease wasn't progressing as previously suggested and that some of the treatment would be working i.e. the mitotane. Another scan was arranged and I had a week of trying to dampen my optimism in case he was wrong. I failed spectacularly in that  and it turned out he was wrong and t he tumour had grown, as previously expected. No new sites but considerable growth around the surgical bed n
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