Blog Post - The Switch and Call to Arms!

 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 fit is now part of my morning routine whilst my chest tries to settle itself. It’s nothing that some steroids, morphine, a warm tea to release some steam, an iced drink to settle my throat and time spent dry heaving in front of a fan/bucket won’t eventually sort out, but it can get really distressing - like an intrinsic panic response. It isn’t an ideal start to the day, and I’m also exhausted by the time I am back to feeling more human.

Because of this change, I contacted the palliative care team who measured the oxygen levels in my blood. Apparently it is normal when I am stationary (~95 for biology nerds) but it drops as soon as I stand (~70 almost instantaneously). The result is that I now rely on supplementary oxygen. It felt like another part of my independence being taken away but the reality has been that it gives me some freedom back. 

In late June, I went to hospital for a checkover. One concern I had was something called abdominal distention which gives me a noticeable pregnant appearance with an extended stomach and the constant need to burp (for that image, you’re welcome). The good news is that it turned out to not be what they had thought - an indication of advanced liver disease. However, they said it is caused by the tumour burden in my torso which is displacing numerous organs and causing some issues with internal pressure. This good news was tempered by the reality that the only way my illness would resolve itself is if the tumour shrinks - pretty impossible at this point. 

Then, out of the blue, I was told I am finally suitable for the drug trial in Germany. 

Yep, the one mentioned to me back in August last year. In even better news, COVID meant I could receive the treatment in London. The oncologists made it very clear to me that this would not be a ‘silver bullet’ and the goal would be to extend life by a few months and then, ideally, quality of life in that time if the treatment halts the cancer in stealing all the nutrients and energy my body really needs. A treatment which had been a year in the waiting was finally coming.

Physically though, by this point, I was really struggling. The loneliness of COVID was making me miserable and I needed company. My sister came to the rescue at just the right time. When she moved in she found a flat full of awful food. She really is the greatest sister ever and her moving back in couldn’t have been a second too soon. .

But there was still the lifeline of this German drug trial - I may as well throw all my cards in. At this point I was not in the same healthy position I had entered other treatments; by this point I was extremely short on breath, unable to exercise, extremely weak and feeling too lethargic to socialise. After pinning my hopes on this idea for so long, it took just 10 days for it to batter me. My days involved moving from my room to the sofa, feeling like I had flu and the mental fog that so often accompanies chemotherapy. And almost immediately I realised I just couldn’t do it. Life for me is about living, not just clocking up the years. Even if the possibility of the chemo kept me going, this was no life to be having. Just a shell of who I was. 

I realised that it was just too little too late. The chance of the chemo working was about 50% of keeping it stable for a few additional months and I knew at that point it just wasn’t for me. If it had kept me in the same physical shape I was in during my trip to Colombia, or even when I wrote the Guardian article, there was a strong argument for giving it a go and perhaps being one of the fortunate ones who responds well to the treatment, but I was so miserable by this point that I couldn’t do anything - read, write, talk, make meaningful conversation. 

I realised I had to finally accept the inevitable, fully, and there was no treatment. I thought this mindset would leave me feeling completely liberated. I was wrong. With no fights left to fight, it really was just waiting and the battle became emotional and mental. I thought I’d be prepared for that. I was wrong.

The first three decades of my life were pretty standard in regards to how things developed. Well, actually they were awesome, and everything was going pretty perfectly with regards to work, health, relationships, and friends. Maybe I was coming to the end of this cycle of my life but one which was full of festivals, ticking off the world's most beautiful places, doing some solo travelling. Big plans for the future too - learn some spanish and then see a bit more of central America and get a bit more out of it with some volunteering. I was always interested in personal growth so doing that in line in line with charity style projects seems perfect.  

My 30s were for more of the same and possibly some settling down for the usually hectic 40s and 50s with kids, mortgage etc. Nobody can plan for life, and I’m not sure that is exactly what I wanted. My friend’s children would call me ‘uncle’ as the parents gathered in the kitchen looking slightly concerned that a single 45 year old was more interested in travelling around Mongolia than settling down. But growing older with my mates and living my life to the full was always part of this nice comfortable plan.

The second half of this storyline will not pan out for me. I feel like half of my planned story arc is unfinished and it's a shame that I don’t get to see where it goes. But everybody dies, and I really can’t but think I’ve given life a good shot.

There will always be places and experiences missing from anyone’s bucket list - the world has too much beauty and adventure to ever complete one. I will miss those things that I had mentioned - marriage or children, blossoming careers and lives moving on. But I’m not alone in my life being cut short, and I think my life has been a pretty successful one. I hope that I’ve made a difference to the lives of those I’ve met and continue to bring joy and happiness. Regardless of whether the above is true and my life would be defined as ‘successful’, it has no real bearing on whether I’m allowed to enjoy a few days of sitting and doing very little, not beating myself up over anything I should be doing. From reading Stoicism and Buddhism I know the way to try and tackle this period /life in general is to accept what you can control and learn how to let the rest just happen. It is just very hard to remember this sometimes. Sometimes it is hard living up to it. But I know it’s something we should all try hard to remember.

An apology to my friends (I don’t think it would be a blog post if I don’t include one!). The rut I found myself in a few weeks back hasn’t lifted and I’m dealing with a whole plethora of emotions right now. I’ve definitely been ‘feeling the victim’ a lot more than usual and not only has it been awful for own mindset as but I think in regard to my own mood and letting people know what I’m capable of right now. For whatever reason I havn't been focused on general life in the last few weeks, just myself. My acceptance that my time and energy is now limited also comes with the acceptance that I won’t be able to catch you all properly to give our relationships the time and appreciation it deserves. I get so many messages from you all which often exceed the energy I have to reply, and I’ve instead been trapped in my own head and uninterested in the world that exists outside it. This not only has been awful for me but also made out as if I am unavailable. I’m definitely NOT unavailable, although will have to change plans last minute sometimes based on energy etc and also have to think about lots of things before some pretty simple trips (e.g. wheelchairs, how flammable the environment is, phone, wallet, the usual) but I want to see as much of you all as possible. COVID is as destructive as ever but I guess we’ll work our way around it. Also, if I had seen you I would have been really self involved anyway.

Where I am able to see people, I'd just say keeping me company and positive and upbeat is definitely my primary goal. I want fun, laughter, happiness, joy. I’ve put some of the sources below because I found them helpful myself in learning about the dying process, and what it is like for the person that’s ill and the people around them. I think it’s very possible to have this kind of death - there will likely be a shadow of sadness hanging over proceedings, but for the most part I want everyone relaxed and it being one big love fest :)

I haven't asked for a specific prognosis as I think there isn’t much to gain from asking all the time and putting everyone through that horrible question. Saying that, I think it is roughly weeks to months, possibly 4-12 weeks if I was to guess. But I know roughly what it’s going to be and medicine has luckily turned this into quite a gentle process. That really does take a lot of the fear away. The battle now is how to deal with the period in between. I’ve always been hyper motivated to make the most of every second and you’d think that maximising each moment before dying would be something I’d be a professional at by now. But it's not something you can read in a book and I’m going to have to do it the hard way - learn one day at a time, make mistakes, and hope that you come out having more good days than bad. 

I want to repeat how this period since being diagnosed has been made not just bearable but actually fantastic. I’ve created genuine new moments that haven't seemed tainted by cancer - and these experiences are, as usual, much better shared. They are nothing without other people. It’s all been because of the support from friends and family. In a situation which is pretty new for most people (I am yet to meet anyone I grew up with who has had to deal with cancer or a similar chronic illness at my age), I don’t know if I just know a high proportion of amazing people (possible) or if humans tend to be the same (also very likely). 

So I guess as a trailblazer I can act like the wise old sage and give some of the information back. Cancer has given me the opportunity to think about my views on the world, leaving me with a series of reflections which I think are worth sharing from my 31 years of life (I’m hoping impending death now grants me the licence to sound prematurely wise and overly grandiose).

After the gut punch of cancer diagnosis, I’ve really struggled to define a purpose for my own life. I found in time this came naturally. Life is for enjoyment. Make of it what you can. In April, I published an article on the Guardian hoping to offer some perspective to those struggling in lockdown. The amount of people I seemed to inspire was well beyond what I imagined. I realised my biggest contribution is that I can inspire. I am not someone who will row around the world, I’ll leave that to the really special people. What I’m really leaving is the ‘inspiration’ aspect - the charities that people donate to will be the ones doing the heavy lifting. I see any organisation that is set up by me as one that offers support, financial in the form of matching donations made by other people. The technicalities will be worked out later. 

If I was to list 5 value or areas which are think are particularly important to me they would be roughly

1. The importance of positivity and gratitude - during my worst moments - the shock of cancer diagnosis, the mental lows and debilitating symptoms of chemotherapy - it was difficult to picture any future moments of joy, closeness or love. Yet they happened. If you want the rainbow, you’ve gotta put up with the rain. Take every day as they come.  The positivity to get you through these moments in life is a choice, albeit one which is extremely effortful and requiring a bucket load of faith (and I don’t mean this in the religious sense). During some of my most forlorn moments about the future I was losing, I found solace in remembering what I have - an amazing family, the friends I've made and times I've shared with them, the privilege of the life I've had the fortune to experience. Meditation is useful and gratitude is the philosophy that turns what we already have into enough.

2. A life, if well lived, is long enough - this can mean different things to different people. This might mean travel. I’ve had the privilege to do this and can confirm that the world is a wonderful place full of moments of awe and amazement - soak in as much as you can. Or this might mean staying active, as much as possible - the human body is a wonderful thing. You only appreciate this when it starts to fail you and physically completing your waking hours becomes a 12-hour long struggle. Amidst the chaos of being in day-to-day autopilot mode - whether that covers work, family, chores - take simple pleasure in movement and look after your body because it’s the only one you have and it’s bloody brilliant. Whatever living well means to you, do it as much as you can. Science has proven that regular exercise is good for your body and mind as well. 

3. Being vulnerable and connecting to others - we live in a society that prizes capability and independence; two things which cancer often slowly strips away from you. This was naturally a very difficult pill to swallow for a healthy, able late 20 something year old male but needing to allow myself to be vulnerable and accept help was a real eye opener. The acceptance of my vulnerability has given me the best two years of my life which was pretty inconceivable at the time of diagnosis. Firstly, it’s shown to me what a phenomenal person my sister is - words can’t do justice to how much she has done for me. I may not have won the genetic lottery in appearance (2018 was a difficult summer constantly being told that I looked like Dr Alex from Love Island) but I certainly lucked out in the genetic lottery stakes for siblings. And secondly with my friends - what better way is there to spend life than two years surrounded regularly and closely by these people?

4. Do something for others - against the recent backdrop of COVID-19, Black Lives Matter and the desperate attempts of migrants to cross the English Channel, my thoughts really turned to those who have not had my privilege - whether that’s by virtue of the socioeconomics, ethnicity or the country I was born in. I always try to check my privilege. Charities that focus on helping those into opportunities who might not otherwise get them therefore are ones that will always stick out to me. 

5. Protecting the planet  - I can't leave this off because it’s so important. Charities or people that have some focus on the natural world and keep at least one eye on it going forward will always hold a place in my heart. 

This is by no means a definite list that will not change but I think that these 5 are pretty rocksteady choices, I hope you agree! I also want to stress that I’m not limiting my support to cancer charities. Whilst many of these do an amazing job - Trekstock for example - but places like the centre ‘National Inpatient Centre for Psychological Medicine’ (to pluck a random one that may or may not have done wonders to help my friend...) definitely fit the category.

 

I don’t think any of the 5 above are particularly surprising but if I was to have a particularly ‘vision’ for how I’d like to see improvements in the world, they stick out to me right now.

I find myself in a position where people are asking me how they can help or what they can do that would make me happy. Apart from the obvious - looking after each other during the period after I’ve gone and helping with the grieving - I’m gonna push for people to really give to charity. I’ve already had so many people ask which charities I recommend and there are loads but I’d say one’s that align with the ‘values’ above then I’d be delighted. Some people have already started setting up events which sounds incredible and I’d love to do a shoutout for as much as possible!

Going forward, if this gets any traction, there has been talk from family and friends about setting up an official ‘Foundation Trust/Legacy’. I’m going to take advantage of the clout I’ve got at the moment and strike whilst the iron’s hot. 

The ravaging impact of cancer

So this is a call to arms! 

I would love it if all events you guys are doing in the near future were given a shout out to the fact that this is being set up and all that are will be given a shoutout in return to try and boost the coffers. My friends and family going forward will be in control of turning this into more of a legitimate thing but for now, lets just raise some money! I want to see a huge range of activities, but whatever is in your capability!

I'm sure there is a reason why you are doing an event to raise money - whether it’s for me or someone else, and it would be great to hear on your donation page what inspired you, as well as including a shoutout to us so people are aware of what we are trying to do. 

 

For what it’s worth, during the last few years I’ve set up tree planting events to try and get people outdoors and socially mobilised. I’ve also tried to live by my own words and kept as active as possible - climbing Table mountain a month after some brutal finishes and I was given just a few months to live and basically doing a huge full on holiday - 2 active safaris. I did the same again in January after that chemo finished, not letting people tell me that my body’s weak state should mean I should rest and really making the most of the energy I had and getting out there to enjoy the sweet planet that we have in front of us. I gymmed throughout the entire period and walked thousands of steps a day without thinking about it.  Money wise, I was gobsmacked to raise almost £5k just by shaving my hair, with help from some friends! I myself will donate at least this amount myself for some of the events happening at the moment to show my financial commitment. But what the legacy is going to do will be much more!

To end the blog I’ll keep things positive. Whilst things are really quite hard right now, that is to be expected. Nobody said dying was easy and it's something I’m struggling with. Learning not to be so hard on myself, and to sit back and enjoy each day as it comes, is difficult. But life is a journey and each day is different. Let's enjoy the ride. 

My mates Ed and Sam and their massive walk. Please support :)

https://www.gofundme.com/f/cotswold-way-walk-for-elliot-dallen

If any other events want to be tagged in this post let me know!