So, this entry is about the days leading to the start of the chemo. I am writing the entries in a very casual way just as thoughts come through. It must be a bit annoying to read but I think this is the best way I can fully express what was going through my mind at the time. It’s not a book isn’t it?
One of the things that were a bit ‘peculiar’ in my case compared to what most people go through is that I don’t have any family in the UK. Having to tell family members about this is just awful. Some people just want to ask loads of irrelevant questions to which you do not have any answers yet and they just add stress and anger. Some people are really supportive. In my case I didn’t need to tell anyone apart from my parents and my sister and they just managed this topic the way they wanted back home – some of my aunties and cousins did not find out until a couple of months after finishing treatment. Not having to phone people and go through the same story over and over was really helpful, I think. I told a few friends who I normally see every other week and then gradually I started to tell other close friends. All in all I think I told about 7-8 people in the first month after diagnosis. I hear about some people who feel relieve telling others but for me it was the opposite. I was heading to a process in which I was going to be immunocompromised and so seeing friends was also a risk I didn’t want to take, so I just kept a lot to myself.
Another note, I had moved 9 months ago but I was still registered at my old GP, which meant I was initially referred to a hospital half an hour away from me. If the treatment days at the hospital were manageable I was planning to stay with that Trust, however if the treatment was intense I would be asking to be transferred to the one closer to my home – I literally live 10 min walk away from one the largest hospitals in the South of England, so either way I considered myself lucky**.
Anyway, back to the treatment options. My consultant was very knowledgeable and experienced (or at least that is how I saw her – and this is very very important, to have trust and reassurance from your medical team) and gave a comprehensive overview of the situation. I had already done a lot of research around and had a good idea about what was going to happen – however I was not expecting to have Stage 4, and so the treatment options were much harsher than expected (more hospital visits, stronger side effects). For me due my age and some health checks (liver and kidney functions) the options were ABVD or escBEACOPPdac. The first was a ‘milder’ treatment which would have a lower chance of success compared to the stronger and intense second option. My job is home based and I don’t have kids or any dependants, so this was an easier decision that for other people I guess. **Changing hospitals means changing medical teams, and this was the only thing I wasn’t really happy about. But since the escBEACOPPdac is intense in hospital days, it wouldn’t be logical to stay in the one ‘far’ from home.
I was handed the protocols for each treatment, which as a Scientist I loved, because everything you are going to do is written down, reviewed by the top medical teams in the country and aligned with best practices in other European countries. I was very sure I wanted to go for the esc one as this was my consultant’s recommendation -> at this point I just wanted the best chances of survival and the focus was surviving, I didn’t care about the journey. Still, you need to go home and come back days later to sign the consent to treatment; to me this meant just signing a paper to be okay with me potentially dying from side effects or a reaction to the treatment, but well it is just a formality. I guess for people who need chemo and surgery combinations there are deeper implications with this paperwork.
So, I asked loads of questions about how the treatment was going to be and what I would be able to do and what not and most answers were ‘each person is different’. One of the things that made me realise how serious this was came after me asking ‘can I work during treatment’ (as in, I am legally allowed), and the answer was ‘you might not be very well to work at all, most people are just off throughout’. Also when I asked about doing sport during the treatment and after a little smirk I was told ‘well if you can sure why not but you will find out that you are probably not going to have any energy to do much’. Dammmmm they were right!! I was a bit gutted I couldn’t start the treatment the next week and I had to wait 10 more days, but well, couldn’t complain either.
I left the consultation room with my girlfriend and as said I cried loads outside for a good 10 minutes. Then I drove home and we stopped in a pub to get a drink, I was like not believing what was going to come, I wasn’t panicking or anxious yet but I was just accepting that this was going to be a long journey. All these plans about when are you going to be on holidays, how much pension contribution are you giving this year, whether you wanted to change car or not… you just realise that life becomes so simple (despite the complexity of the situation) and all your normal worries are just now a bit irrelevant in the grand scheme of things.
Had to call my parents to tell them what the plan was. My dad is retired and has a good state pension (yes, some countries in the EU take good care of their pensioners!) and my mum has a good job which allows her to work remotely if needed. They could afford to come to the UK and rent a place whenever they wanted to visit. I feel very lucky with my situation despite the adversity -> I had a plan, I was going to be very close to the hospital and my parents were planning to come around to help and support. Not to forget my amazing girlfriend who is like the most supportive and emotionally intelligent person to ever live. So in these situations I also thought about people who had to travel to hospital and spend money on taxis (you are not allowed to drive on chemo days if you are doing this regime), people who live alone and don’t have others to vent or to share their worries with, people who are in a bad financial situation and the stress of cancer is made worse by the anxiety of not having a stable income… Being a patient can be awful in so many cases and unfortunately you end up relying on charities for support which the ‘State’ does not provide.
Until the chemo start day I was just researching around the treatment regime, reading the protocol in an out, I knew every drug and every potential side effect, every dose… But nothing prepares you for what’s to come. We all know people who have gone through treatment but most of the time we are not on their day to day visits to the hospital and their worries and their pains and the harsh reality of chemotherapy. We fixate on the % of cure rates and the new treatments reported on the news but we don’t get to know THE JOURNEY, we only know about the end result. We need so much visibility and awareness as a society on these topics. We need empathy.
This is the protocol btw just in case anyone wants to check something NSSG Chemotherapy Protocol I will probably describe it on my next post.
Reaching that first day is just agony. Yes you do want to start and get healthy asap but boy it is scary. You start thinking about all the side effects, you start thinking about potential allergic reactions -> your body has never seen these chemicals, how is it going to react, what is going to happen?!? Loads of thoughts and questions and doubts. But once you get to the hospital the staff is amazing. I mean they have so much empathy and they are also trained and experienced on top of that. They put your mind and ease and explain everything to you. Nursing teams in the NHS are just fantastic and I have dealt with several ones over the last year.
It has gotten a bit late and I will leave the chemo start for my next post. I just remember that I was starting on a Monday and my parents arrived on a Sunday, full on face masks and everything as they were so aware of what could happen if I was to get any infection. You could see the fear in their eyes. This is something cancer patients just have to deal with, seeing other people looking at you with fear, with pity, with sadness in general… It is awful. You just want the normal behaviour from the other person, as difficult as it is. So, I left them in a hotel and went back home. I slept well and the next morning I was just shitting myself but not as much as I thought I would. What do you pack for the day? Whatever you read online from other people, even though I wasn't a fan of hearing other people's experiences with hospital so I read as little as possible. Headphones, notebook, medical docs of course, some snacks, water (I used to drink a lot and I increased my fluid intake even more during treatment), socks?, tablet, charger... I was too nervous anyway so as long as I had my ID and face masks I was fine.
The 45 min taxi journey was just awful too (plus the 80£ paid for that – again, patients have to deal with so many things and money just adds even more problems). It was my girlfriend’s birthday that day and we were going to hospital for my first chemo session together. Who would have thought a year ago that this was going to be the experience on her big day? Wow. Just sad in so many ways but it is what it is.
