Birthday Broadcast


I turned the grand old age of 31 on Friday and celebrated it in typical 31-year-old fashion by going to a museum in the day followed by a nice meal in the evening. I can’t say I’m unhappy with how low key it was - it was an ideal day. I have to accept my age and who wants to go out in their 30’s and get smashed to start another year? Exactly. The thought of the hangover is enough to make me want an early night.

Heston's best

I was busy on the weekend as my mum was visiting but I thought for a late birthday event, I’d do something different. I was searching around activities in London and thought it would be nice to do something a little bit different and help out in the community and I found ... wait for it ... tree planting.

What better way to spend a Saturday morning than with my mates, possibly in the rain, getting a bit muddy and off-setting some carbon, right? It’s hard to arrange a one-off event unless you are a corporation and I am yet to reach that level of higher consciousness but the one I have found next Saturday can accommodate up to 300 people and I don’t have close to that many friends so it’s ideal. It is 11am-2pm, 3 hours of time spent outdoors doing conservation work in with the aim to plant 3500 trees, maybe learning a bit about what other work they do, a few tours of the local nature reserves and with all equipment and lunch provided for you (although I wouldn’t expect the food to be too incredible as this is a charity, so don’t use that as a deal breaker. And still dress for the weather). On top of all that, they also offer face painting.

It would be great if you are interested in joining me. Please let me know as you need to sign up by Wednesday at the latest and we’ll meet up beforehand. See more information below.

https://www.london.gov.uk/what-we-do/environment/parks-green-spaces-and-biodiversity/plant-tree/tree-planting-week-events/tcv-60th-anniversary-tree-planting

Oh -  and afterwards, purely to warm up, I think we should all go to a pub in Camden for a drink. Then see where the afternoon takes us. Having that as a follow up also makes face painting sound like it could make things a lot more interesting.  

I should probably give an update to what’s going on health wise as it has been a while and I seem to remember that’s what this blog is meant for. I haven’t had treatment since my last post and have decided, for now, to put all of my eggs in the German basket in the form of a Phase II clinical trial. I haven’t received much information yet except that, mitotane aside, I am almost definitively eligible (in my current condition) and that it involves taking an immunotherapy pill (Cabozantinib) every day and visiting the clinical trial team in Wurzburg once a month for checks. However, I need my mitotane level to drop below 2mg/l. On the date I was tested it was around 16 and it has a pretty long half-life so it could take a while but it’s been about 6 weeks since I stopped so I’m hoping that the trial may realistically start before the end of the year.  My doctors agreed it is the best way forward seeing as the only approved treatment isn’t working so whilst I wait the plan is to get as healthy as possible, have as much fun as possible and try not to die as much as possible. 

Coming off from mitotane, whilst probably not good for the long term if I’m not taking any alternative treatment, has been fantastic. The only other break from it I had was post-surgery and I was in a pretty dire condition at that point so couldn’t really appreciate it. The side effects I’ve had haven’t even been as bad as what I’ve heard from others and their experiences with this shitty drug but it still left me feeling tired, numb and with a rubbish stomach at the best of times. This is the best I’ve felt since I was diagnosed. I’ve taken this opportunity to stop taking some of the other pills that aren’t completely essential. The anti-depressants were relatively easy although I still get a bit of the emotional mood swings that come with withdrawal, but that’s wearing off. The sleeping pills are much harder, as they were meant for the very short term (i.e. less than a week). I’ve been tapering off and tonight will be the first night without them at all so I could be in full on zombie mode tomorrow.
   
When I decided not to have treatment, I was not feeling great and felt like I needed a break from everything hospital related ended up doing a spot of travelling – South Africa being the big trip, and also spending some time in Italy, the Lake district, Italy again, Spain and France. It was great a great couple of months and I’m feeling much better than in August but unfortunately, I can’t be on a permanent holiday and so I’m back to the cold of London for the foreseeable future. Being back and feeling much healthier, it has allowed me to dip my feet in the water in terms of going back to work, so I’m trying that out a few days a week and seeing how my brain and body can handle it after such a long a punishing layoff. I think slowly getting back into a normal routine will do my mind a lot of good so in a crazy way I’m looking forward to re-entering the world of ROTE’s, TNE’s and all of the other acronyms I’m going to need to relearn, and I’m sure some new ones for good measure.  

Some village on the Med

So, that’s a brief recap of my last two months. Hopefully see you Saturday my tree hugging friends. For those that have got this far and can’t make it Saturday I am probably going to do something in the evening on Wednesday, with the focus solely on the drinks.

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