Post surgery

Fun on the M40

I know I keep saying this but I really will try and get better at updating this. I’m currently turning out blogs only slightly more often than George RR Martin is with his books, and they aren’t nearly as exciting without the sex and dragons. Anyway, picking up where I left off…

For probably about 2 months after surgery I was not in a good state. Although the surgery was successful my hormone levels were all over the place and it is pretty much trial and error – if I’m taking the wrong dosages, then my body tends to just give up and I end up being rushed back into the ward. The first time this happened was within a week of being discharged. At first, I was on the up. I was walking more often, leaving the house and increasing how far I could walk by a couple of dozen meters each day. My wound was healing nicely, I was eating better, and my blood results weren’t awful. I even came off the painkillers within a few days, as I’ve watched too many programmes about America’s opium epidemic to get an oxycodone dependency. But suddenly I just crashed completely and ended up spending most of the next week back in hospital being given fluids intravenously, with the return of the rota of 6am wake up calls for bloods and having to relearn how to walk 10 meters without suffering from exhaustion. The main thing the doctors found was low sodium, which could be caused by so many things following the surgery that they decided just to address the symptoms rather than the cause. Feeling better, a new pack of sodium pills in my pocket, and having watched every good film the hospital showed, I was released.

A week out of hospital and I was making strides with my walking (I walked a full 400 meters one day) and I was back in again, in a slightly more dramatic way. I was being pestered to go into hospital for a couple of days as I had thrown up a couple of times and was feeling pretty weak but kept putting it off to see if I would recover. Eventually I was persuaded it was a necessity. Upon leaving the flat I found out just how bad I was. I had absolutely no energy. I could barely stand up, and had to stop a number of times even whilst being helped down the 50 metre road to be picked up by an Uber. When I got to the hospital a wheelchair was waiting for me and I was rushed in to the ICU. I remember it all quite well - the doctor had been called in and was reassuring me confidently that he had put in more cannulas/needles than I had had hot dinners. He then discovered I was so dehydrated that a canular in my arm wouldn’t be enough and that there were no veins big enough in my neck (normally a vein hotbed) to put a line in. I know this because he tried multiple times, with the mark still remaining, and if I wasn’t in such a state from the weakness and dehydration I’d probably have felt the pain a hell of a lot more. So instead I was forced to spend the next week in hospital with a number of IV lines in my groin. Not the most pleasant, or practical, area to have lots of wires inserted. I spent the next couple of days in ICU, unable to eat, and with a huge window with a lot of people walking past. There was a TV in the room that I didn’t even turn on because of my lack of energy. The main issue again was using the bathroom, for which I needed assistance again. I had an old-school heartrate monitor attached to me which involved about 10 pads on my chest which all needed to be removed each time, and as my energy levels were at an all time low I could barely take my boxers off without trapping myself in the wires. Each time I had to ring the alarm and a nurse or doctor had to disconnect everything and then help me move, with the IV stand and bags, into the bathroom. Pretty soon I decided it was too much effort and discarded my clothes completely and lay naked on the bed, feeling like some kind of experiment. Machines beeping and wires attached everywhere, and doctors occasionally coming by to check in on the bald naked creature through the window. Again, eventually I was moved to a new room and returned to the process of eating, hydrating, not showering, watching some of the good films again (including Eurotrip, no regrets) before conceding defeat and watching some bad ones as well, and seeing nurses, doctors, surgeons etc every few hours. All of this the result of simple dehydration. When they said ‘drink a lot’ they really meant it and anything less than 2.5 litres a day meant I was in trouble. So this time I was let out of hospital with the order to drink more firmly ingrained.

A couple of weeks went by and I thought I was out of the woods but again, got to a point where my energy just deserted me, and I found myself unable to walk. It had gone past being scary by this point as I was so used to it, and it was more a feeling of ‘for fuck’s sake, I’ve got to go in to hospital again’. I wasn’t as bad as the previous time, possibly because I didn’t put off the admission, although I did finally admit defeat and watched the films I had been desperately trying to avoid including 50 Shades Darker and Zoolander 2. This was the final straw and I made much more of a fuss about the fact I had been admitted three times in pretty quick succession, none of them due to any infection, and that they hadn’t found a cause. My heart was checked for any damage, I had a CT scan to see if it was the return of cancer in my lungs, and I was visited by a number of specialists. In the end I was treated for high potassium and my drug dosages were significantly increased, particularly the hydrocortisone (cortisol replacement).

Overall I was in hospital for about half of the first two months of the year. By the time I came out the third time, I was down from 72kg pre-treatment to a low of 57kg. This was pretty frustrating as I only lost 3kg during chemo and up to the surgery date. The effects of the chemo were still with me and I felt like hell with no energy to do anything, including eat or talk. It felt like it would be a long road back to any kind of normal life.

Eating became a full time job, and like any job it was hard and exciting at first but soon got easier and more like a chore. Hydration is still a full time job, as is taking pills. Currently I take hydrocortisone and mitotane 3 times a day, fludrocortisone twice, levothyroxine, sertraline, temazepam, omeprazole and, the latest addition, a testosterone cream. My endocrinologist has said I’m now on every hormone I’ll ever need to be on, but I’m sure something new will come up. Thankfully I no longer have to take Clexane - an injection I gave myself every night to lower the risk of a blood clot - or sodium pills 3 times a day.

With all that said, the last couple of months have seen a good improvement. The drugs do work! I’ve packed the pounds back on and I’m back up to 72kg (steroids really help with this, don’t be surprised if I’m above 80 in the next post). My walking improved quite rapidly when not interrupted by hospital admissions and I ran a 5k the other day, and my core is getting stronger from the physio exercises I’ve been given. I have hair again and my skin is no longer stone white. On top of this I’ve returned to work a few days a week, been to Budapest and Paris, been given the green light to drink, been to my first wedding of the year and a few gigs as well. Part of the reason I’ve been so bad with the blog is because I was either feeling too bad to write it or wanting to take advantage of the time I’m feeling well to get out and do stuff so I hope you forgive me.

Bae

So, a quick summary of my current position. There was no evidence of disease in my last scan in February (some small things in the lungs that could be tiny tumours but would be too small to do anything about anyway). But the doctors say they can’t say explicitly that I am cancer free as you never really are at Stage 4, particularly with such an aggressive cancer. I am taking the pills above, at various dosages, probably for the rest of my life. Currently they aren’t too much of a bother, other than remembering to take them, with the main side effect being my body’s inability to control its temperature and ongoing tiredness. I will hopefully continue to regain strength and soon be able to work full time and return to some proper exercise. Bloods results improving each week!

A pretty eventful year

I had a scan today which is the first official ‘3 monthly’ to check to recurrences. I will let you know the results next week. Thanks for everyone for their support and for forcing me to go back into hospital when I was being stupidly stubborn  😊