I have now been on a combination therapy of Nivolumab and Ipilimumab for five weeks, I was starting to lose a bit of optimism as Pembrolizumab had not worked as well as we had hoped. It’s been quite exhausting the last few weeks and Georgie and I were desperate to have some quality time together as she was really busy on her A&E placement as a medical student and did not have much time off. So over Easter we went to Brighton, a lovely Good Friday, one year on from our first date in Greenwich. It was lovely starting the day with Georgie’s Sister-in-Law cooking poached eggs then getting the train to Brighton. It was a very nice day and powered by the immunotherapies in my blood stream, I felt pretty good and managed quite a lot. We had a wonderful fish and chips on the pier in the sunshine, life felt very normal for once. We walked round more then went for an Indian meal in, the South Lanes, which having lived in Leicester for years did not live up to much.
The next day was disappointingly eventful. This is life as a cancer patient, it is so up and down and unpredictable it does not help that my body either seems to be fine, or it is confused, weak with speech difficulty and there’s not much in between. We got breakfast in a very nice cafe, then went on the bus city tour; the weather had deteriorated from the day before but it was a pleasant way for disabled me to see the sights. Whilst on the bus we discovered the mini golf on the sea front. It was pretty cold but regardless we had a go. Georgie was on fire and I was consistently my inconsistent self, getting some good shots but blowing it too many times. Georgie managed mostly holes in two without needing her trademark “practice go”. We were feeling tired after this and went back to the hotel. “The Royal Albion Hotel”, location and price being excellent, the room itself being ok and the clientele should probably read my last blog about alcohol. Despite it being three pm when we were allowed to check in, many people had cracked open the beer whilst in the check in queue and there were plenty of empty bottles around the hotel. It struck me as a hotel that had been very “Royal” and had slowly changed. Regardless it was just what we needed.
During a nap I changed. Georgie started to get concerned with me and before I knew it two nice Brightonians in green paramedic uniforms were in our bedroom, I remember talking to them but I do not remember the ambulance journey and before I knew it was ten pm Matt Sims had turned up and it was clear that our holiday was not turning out as we had expected. After receiving some IV dexamethasone I was significantly better. The whole time the doctors were insisting on a CT head scan, which I was agitated about and refusing. I’ve heard all this second hand because I actually can’t remember any of it. Both Matt and Georgie agreed it was pretty pointless. The problem is the next day the registrar convinced me that the scan would be quick, and he would not be doing his job properly to see if I had had a bleed in my brain if he did not do one. I indulged him and eventually we left, by then I was more than fine. The scan again showed nothing new. Helpfully, though, I asked the health care assistant (who asked us about applying for medical school) about places to eat and he came up with a very good option for Matt, a vegan, and Georgie a veggie. Iydea is a canteen style vegan cafe, in the pretty North Laines (commonly misspelt ‘Lanes’) and it was very good indeed. We left Brighton after that hoping things that weekend would not repeat themselves. Georgie was still off for two days and we chilled.
However it was not to be, on Tuesday through the grapevine my team had heard about my admission and asked me to come in for an emergency appointment, classically I thought it was pointless but it was not. I became increasingly confused throughout the day and ended up being admitted once the registrar saw me at the hospital. I ended up having another CT head scan that again showed the same result. There was a bit of hanging around with them trying to give me oral dexamethasone but me refusing and Georgie insisting for IV dexamethasone. I went home on Thursday and I actually started to feel a bit better over the next week. Admittedly I was still weak and had a bit of a headache but a hospital admission seems to get further away. I had an outpatient appointment on Thursday the 7th and was given the all clear to stay at home. The lymph nodes in my neck were showing signs of flattening off and so were the tonsils.
On the Monday 11th things were starting to look somewhat better, the day I got the drugs again, the tonsils were looking smaller still, the LDH (lactate dehydrogenase – a crude marker of disease activity) is going down. Out of hospital now seems like the status quo right this second, but having had so many admissions it never seems very far away. I’ve had another week since, been to watch the Lion King musical with Georgie which was brilliant and gone to Cornwall, little victories.
It is a terrible thing to say but as my health has deteriorated, (post dabrafenib which had kept me in pretty good health) the cancer is starting to define me. Having cancer does define you because quite simply it won’t go away, please add harsher language, saying it’s a marathon not a sprint just doesn’t give the fight justice, it’s everything. You try not to think about it, but something else happens you celebrate a small decrease in LDH because that implies perhaps the disease is finally under control (maybe) but then a couple of days something else hurts or in this case you get some side effect or other. Basically it’s impossible to have any real idea what’s going on. In this case, one of my liver enzymes (ALT) has increased quite a bit, it’s not too high yet, but needs monitoring, as its over five times normal. Cancer never lets up. It makes relationships seriously hard, there’s loads of strains. I’m a proactive man and never wanted to be cared for. It’s embarrassing having to have Georgie and Mum carry my bag, not being able to go away with Georgie, the burden of me on her exams, it’s complete chaos, so unpredictable, she’s given so much but I struggle to give back because I’m ill. I want to be a fiancé, son and twin brother, not cared for. It really has just become a big wait; will the combination work or will it not? Will I get a normal life back or not. I’ve fantasized about the future and it’s great, my overwhelming wish is for the team to sedate me for six weeks or however long it takes and pump me full of drugs, radiotherapy and whatever else it takes and come out the other side, I’d be wasted, disoriented, perhaps have a DVT but I’d be cancer free. You see I’m not giving up and I’ll do whatever it takes but trust me if this happens to you it will be the hardest thing you’ll ever do.