I wanted this blog to be a little different to others that are written ‘diary style’. When I got such a positive reaction to early chapters I thought it would be great to share the perspective of others, and I suggested it to my oldest brother, Lee. I thought at some point I’d get a few lines. Instead I got this fantastic mini essay just days later! As a result some references are old (it was written in April) but it loses none of it’s meaning. I hope you enjoy reading it as much as I did.
This is going to be difficult to write.
Not because it's difficult to talk about the tough battle my baby brother has had to endure (although that is certainly true), but because my memory is absolutely appalling. I use an app called DayOne on my iPhone, in the hope that I can keep a journal of my life. I started using it on my 40th birthday, as I knew that things were only going to go downhill from then on, but the truth is it's always been bad. If I don't use the app for a couple of days, I struggle to remember what the hell I've done and there are gaps throughout my journal representing the gaps in my memory. It's shocking. Anyway, this blog post isn't about me. My wife could probably write her own blog on me, my awful memory and how frustrating it is for her (and may well do so at some point). This post is about my little brother and my perspective on the last year and a bit of his life. Shall I get on with it then?
Because of my bad memory, I'm struggling to recall specific details - things that were said to me at certain points, details about the latest object being inserted into one of his orifices etc. What I tend to remember more clearly are the thoughts and feelings that I had at specific times, and hopefully I can describe those for you.
I knew that Nick had been suffering from stomach pains for a while. He was trying to cut out certain foods, which wasn't helping, and eating less wasn't reducing his weight either. Just one of those things, I thought - he's always been a big lad, able to do a mean truffle shuffle when he was younger. His weight has gone up and down throughout his life. Plus, bodies change and foods can start having funny effects on you at any time. I'm sure they'll get to the bottom (no pun intended) of it eventually I thought...
I remember getting the text to say that he was in A&E. I was at work, and it went along the lines of 'fainted at work, I'm in A&E, nothing to worry about'. I was obviously worried, but Nick has always been able to downplay his condition to avoid panic and stress for everyone else. As time went on, this obviously became harder to do, but he's certainly tried!
One of the main reasons for trying to downplay things and avoid concern was probably because, at the time of his diagnosis, it had not yet been two years since my wife had lost her own brother. Pretty much the same age as Nick, and with a wife and two children, he'd developed a heart condition, which had affected his quality of life, but he certainly wasn't dying. One day, following a few days in hospital, I got an unexpected call at work from my mother in-law, telling me that he wasn't going to make it and that I should get home quick to be with my wife, who was looking after his kids and our own kids. I couldn't believe what I was hearing, as less than a week ago we'd been at his house for his daughters birthday party. It just didn't seem real. However, less than a few hours later, he was gone. The devastation that caused was obviously immense and continues to affect us all in different ways and at different times. I'm sure Nick had all of this in mind, and was trying to spare us from thinking that history was going to repeat itself. He didn't need to do that.
Nick's stay in hospital following his collapse at work was one of many times to come where tests and procedures were carried out and answers given which later turned out to be incorrect. That whole week is a blur to me. I remember taking our mum to visit him early on in the week, but that's it. Reading his blog post about this stay in hospital, it was obviously horrendous. I'm amazed now, that after all the time he was there, the upshot of all of it was that he had some scarring to the lining of his tummy and this was causing bleeding. Something like that anyway. As you know, my memory is awful. It seemed like a reasonable explanation though, something that could be sorted, so I probably just moved on and didn't think about it too much.
I don't remember much of the next few weeks. My wife and I had won a holiday to go back to the hotel in Cyprus where we got married (just us, no kids, woo-hoo!!) and during this time in May, there were more tests and consultations going on. I was keen to find out how Nick was getting on while we were away but not wanting to spoil my holiday, he was pretty vague with the details. Soon after we returned home, we got the news that it was bowel cancer. Again though, he continued to downplay the severity of it all.
Nick, Kerry and Ethan came to our house for lunch on Nick's 33rd birthday, 26th May 2013. It was one of only two times during all of his problems that he looked seriously ill enough to really have me worried. He was pale, weak and tired and sat in a comfy chair in the garden watching our children play together. He ate Heinz spaghetti hoops while the rest of us ate bacon sandwiches; plain sponge cupcakes while we ate chocolate birthday cake. My mum was there too and I suddenly appreciated the importance of family and us all being together. I also dreaded the thought of going through the same thing my wife had been through with her brother - the painful loss of a brother, a son, a husband, an uncle and a father.
The next few months, Nick was going through his chemotherapy treatment. Miraculously, every time I saw him he looked normal. He looked tired, but he certainly didn't seem unwell. The chemotherapy seemed to be working, so that was good - he'd be more than ready for this nasty operation that had been spoken about, but was too far away to be of any concern right now. In the middle of his chemo treatment, we all had an amazing mini break together in a Forest Holidays lodge. Another one of those times when it felt good to have most of the family together.
2013 went too quickly for me really. Before I knew it, Christmas was upon us. Chemotherapy treatment had come to an end, his tumour was reducing, and preparations were being made for 'the mother of all operations'. Nick, Kerry and Ethan came to our house for Boxing Day dinner, as did my mum and nan. Another one of those wonderful family moments. Nick still seemed ok - although part of him wanted to hit the operation head on as soon as possible, he must have been dreading it too. He's said many times that you just have to get on with things as you have no other choice. I'm sure that's true, but I really don't think I would have been as upbeat as he was throughout 2013. He's amazing in that respect. His skills at 'Word Monsters', and games in general, compared to me, leaves a lot to be desired, but his bravery certainly doesn't.
Before long, it was time for the big operation. My wife Sharon had offered to go down and stay with Kerry in the Basingstoke hotel, close to where Nick was having his op so that she could be there during that 'limbo' period when he was on the operating table. I don't think I would have been very good to have there, so I was glad Sharon could be. My wife is also amazing.
I was off work on the day of the op. My daughter Katie had been awarded star of the week at school and I went to her presentation assembly in the afternoon, still not knowing how things had progressed with the operation. My mum came with me and we were both worried. As my daughter came out of school, our first update came through on text. It was a long message, full of detail, and it didn't sound positive. A 5kg tumour, body parts removed, body parts damaged, maybe not completely successful, further treatment probably needed. As my daughter excitedly greeted us, my mum and I struggled to digest and understand everything. It wasn't until the evening, at the end of the operation, that we got a bit more detail, and things turned out not to be as bad as we'd first thought. However, the extent of what my brother had been through was incredible, and I wondered how he would be when he woke up.
The day after his operation, my brother posted a selfie on Facebook...
This was brilliant. After all that he's been through, he's right back on Facebook, performing for his audience like the monkey he is. Although he still had a long way to go, this was hopefully a positive start. Anyway, I was due to travel down with our mum on the following Sunday, so hopefully he'd be feeling even better by the time I saw him.
Seeing him in his hospital bed on the Sunday was the second time that I've seen him looking so unwell that it really upset me. He was barely conscious, with tubes going in and out of his body. He acknowledged us as we walked in, but was unable to speak properly. Instead, he began making an open and close movement with his hand, like he was operating Kermit the Frog, followed by a point towards the door. He did this a few times before we realised that he wanted us to talk to the nurses for an update. They told us that he'd had a rough few days and now had a mild fever, which had dehydrated him. We went back into his room and sat there while he fell asleep but about 15 minutes later we were moved to the day room while a nurse checked his catheter. Up until now, I had been worried about how my mum would be when she saw her baby boy for the first time but there she was, seemingly OK, tapping away on her phone. Instead it was me that suddenly felt like I was falling apart and I started filling up. He'd done such a good job of keeping the bad side of his condition and treatment away from me, but now he was powerless to do anything. It hurt to see my brother like that.
Over the next 2 months of his stay in hospital, I only got to visit Nick on 2 occasions - once on my own, and then another time I travelled down with my mum, Kerry and Ethan. Each time he looked much better than before, although he was still continuing to baffle doctors with various issues that were affecting him and his recovery. Once again, he'd had numerous tests and procedures and was becoming increasingly disheartened. Although he was in much better hands than his previous stays in NHS hospitals, he needed to get out of there. Being at home amongst his family was going to be the best possible medicine for him now.
Thankfully, he is now home. I saw him last Tuesday, after being back home for 4 days, and after a dodgy first weekend. He looked so much better than when I last saw him though and it was good to be able to finally talk to him and Kerry in the relaxed atmosphere of home.
There is still a long way for him to go, with more treatment and operations to come. We've also got another family weekend planned later in the year. I'm hoping though that the worst is behind him. Although I don't see enough of my brother as I'd like to, I love him very much, and I hope he's around for many more years to come...
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