Anna and I were sitting in bed 2 days ago, watching some TV with Lucy before going to sleep and looking at photos on her phone. She stumbled upon the picture of me above. We both sat looking at it and said the same thing. “Look how skinny I was,” I said as we both gawped at the photo. It is strange as I knew my weight was low at the time, but I never really stopped to consider what I looked like at the time. I wasn’t overly concerned with my outward appearance; I was far more concerned with what was going on inside my body. To my knowledge, the lowest my weight got was about 62kgs. This was a drop from about 75kgs, which is what I used to hover around, I believe.
I’ve never been someone who obsessively weighs themself or felt overly concerned with my weight generally. As a result, I’m not confident that my weight did hover around 75kgs. It may have been higher. When I was standing in King’s College Hospital during the first visit, back when I couldn’t eat, sleep or walk properly, I knew that the 62kgs they weighed me at was low. Perhaps I didn’t realise how low. By the time I had the procedure to install a stent in my bile duct, it had increased to about 66kgs. They asked me what my weight was during that procedure, and I responded that it was about 72kgs. I had forgotten that they had weighed me a few weeks prior; the stress of the diagnosis the day before took precedent in my mind. The result was that I was issued with a higher dose of general anaesthetic, and felt completely out of it for 24 hours. That is my theory anyway – it is almost definitely wrong. You probably always feel like that after being under. This was my first experience of it, so I’m not a beacon of knowledge or experience in the area.
I don’t know how much I weighed when the picture was taken, but I look very skinny. I don’t remember ever seeing that image of myself in the mirror or in any other pictures taken at the time. There weren’t many pictures being taken though. You usually take pictures to capture memories. This wasn’t a period that any of us were trying to remember. There is a strange duality about this period, though. It isn’t one that we want to specifically remember – a cancer diagnosis, unable to do any of the things I’d usually be doing and spending more time in hospitals than in my own home. The duality comes from the fact that I was worried it may be my life from now on, and I may never recover. Do I try to enjoy it in any way I can? Do we take pictures of us sitting in the hospital waiting rooms? Do I celebrate the procedure to install the port under my skin, allowing me to start chemotherapy? It’s a strange world to inhabit. You don’t feel like celebrating these things, but you probably should.
What it demonstrates is the power of reflecting on a situation. It is hard to recognise that you are at your lowest in the midst of a situation. Looking back at the time in hospital at King’s College, just after being diagnosed, I didn’t even recognise that I was experiencing it then. I thought I was doing a good job of coping with the situation. Thinking about killing yourself if the cancer gets worse is perfectly natural, I was telling myself, and it probably is, but it doesn’t excuse the state your mind must be in to be doing so. There was even a point where I vocalised that I had been thinking about it to my mum and sister. “The train junction at the bottom of Mow Cop, where the mainline trains come through at full speed. I could do it there,” I said to them casually as we sat in my room at the hospital as if I was planning a holiday. On reflection, I realise why they were both crying, but at the time it all seemed quite nonchalant and boring to me. I was surprised that they responded so badly, amazingly.
My weight is now at around 71kgs. A good amount of this may be due to me running some-what regularly again. This means I am gaining muscle back, which was probably what accounted for the loss of so much weight when I was sick. I went from running 5 or 6 times a week, to barely being able to walk without feeling sick and getting abdominal pain. I am also eating much better than I was. In my Road to Diagnosis series, I spoke about how I became a big fan of ice lollies when I was badly jaundiced because they were the only thing that I knew wouldn’t make me feel bad or give me pain. Apparently, a diet of orange flavoured ice lollies isn’t enough to sustain a fully grown male – I’m sure this is shocking news to everyone reading. Now I regularly cook meals, bake desserts and enjoy going out for meals again. Of course, the chemotherapy still means I cannot always eat properly, but it is much more manageable.
What the experience has taught me is that you really do have to try and enjoy your life, no matter what situation you are in. You have to try and make memories wherever you can and enjoy life as much as possible, despite the situation you are in. I have no idea what has caused my situation to get to where it is. I don’t know what started the cancer, I don’t know why there is a cyst next to my tumour, which blocked the bile duct and got me diagnosed, and I don’t know what has caused my tumour to shrink. Of course, I know it is primarily down to the chemotherapy, but I know plenty of stories where the chemotherapy did not work effectively enough to save someone’s life. It still may not save mine in the end, but I am feeling more hopeful and positive than ever. What I do know is that I have found a way to enjoy my life most of the time. I’ve managed to get back to running, I’ve picked up a keen interest in baking and expanded my interest in cooking, and I’ve spent more time with my family than I have since I was a teenager. They’re all things to celebrate, irrespective of the wider context which led to them. There are bad days littered in between, and I still feel very low sometimes, but that is expected. Making the most of a situation doesn’t have to mean being in denial of its limitations.
I saw the below video on Pancreatic Cancer UK’s Twitter earlier. It is about Robert who died of pancreatic cancer at the age of 26. After regularly going to the GP for 5 years without getting a successful diagnosis, he finally went to the hospital. The diagnosis was bleak, and he only lived another 4 months. I’ve said it before on this blog, but sometimes you cannot help but be humbled by another story or situation that you hear about. This story makes me feel like I have nothing to complain about with any of my journey thus far. It may have taken me a few attempts banging on the GP’s door, then the hospital, but I was diagnosed. The fact is this: I am lucky to have been diagnosed when I was, lucky I get the opportunity to ‘fight’ the cancer and lucky to be sat here writing this blog post. I’d have struggled to look Robert in the eyes and tell him he needs to enjoy his life after a diagnosis like that, and I would struggle to say the same to his family, who are now grieving. Although I didn’t think I was the only person to be diagnosed with pancreatic cancer in their 20s, it really did shock me when I saw this story and saw how young Robert was. Someone even younger than me dealing with a diagnosis that any individual, any age, could not comprehend hearing. I am in awe of his amazing mother for sharing his story and speaking so well about such a traumatic and life-changing event.
To end this on a more positive note, and on the theme of incredible mothers and, in turn, women, I want to shout out a few in my life. As you may be aware, it is International Women’s Day today. There are so many women in my life who are worthy of an entire blog post for a lot of different reasons. I want to keep it brief, so I will only speak about those in my direct family.
Everyone who has met my mum, Helen Godley, says the exact same thing about her… she is the nicest, most caring person on the planet. My friend Lauren recently came over with her young baby, and my mum was beside herself. As I watched her cradle this child, I realised that I have never seen my mum with a baby. This is a lie of course. I have 5 siblings, 3 of which are younger than me. I have definitely seen my mum with babies plenty of times in my life, but I don’t seem to remember a single one of those times. I barely remember my life before the age of about 13, and even those memories are few and far between. The way she naturally rocked her body as she sat holding the baby amazed me. Her life has been dedicated to the well-being of others. She dedicates herself to it as much as any person I have met has dedicated their life to anything; she does this without expecting a thank you in return. She is an amazing person.
Next up is my oldest sister Becky. Becky is the oldest in the family, and it is a difficult family to be at the top of. We all have different lives and opinions, but we still manage to get on most of the time. I think this is where she gets her tenacity from, though, as this is a quality that she demonstrates in every area of her life. Having found a pure talent in opera singing, Becky has been extremely studious and dedicated in her persuit of singing. I’ve gone to see her a few times and it is truly incredible to watch someone you know in everyday life get onto a stage and perform in such a breathtaking fashion. Her boyfriend Alex is also an incredible opera singer. As a result, their dog Gus is also an opera singer of sorts, as the below video demonstrates. Becky has a huge heart. She is the one who organised and executed buying Lucy, the puppy that my family bought me to help get me through chemotherapy. It is a great demonstration of how thoughtful, organised and loving she is.
Finally, my older sister Josie. She is next in line after Becky. The fact that my mum had 2 girls, then seemed to make a biological decision to switch to boys and have a further 4 more kids, may sound like a negative reflection on Josie. She is, in fact, one of the nicest people I have ever met (next to my mum, of course). I have barely heard Josie say a bad word about anyone (apart from her husband Keiran, who gets berated constantly by her). She is always smiling, laughing and doing whatever she can to help those around her. Lucky for her, she is also incredibly smart. So smart in fact, that she became a vegan about a decade before it was cool. She used to have to tell restaurants that she was allergic to dairy because if she said ‘vegan’ they would have absolutely no idea what it meant, or wouldn’t care to understand it, and just give her dairy anyway. I think on holiday she was even given fish once, but I may have made that up. Whoever meets her loves her, and it is for good reason. She brightens up every room she walks into and has been an amazing support to me during this dark time.
So, I am now anticipating the conversation on Thursday with my oncology team, where I will find out if they are accepting that I am ready for surgery. My brother Freddie has tested positive for Coronavirus this week and is isolating himself in his room. I haven’t shown any symptoms yet and hopefully, that will continue. As much as I’d like to delay my chemotherapy by another few days, it probably isn’t good to keep putting off treatment. I have to say, though, the further away from treatment I get, the better I feel. This is the first time I’ve had an extra week off, and I have so much more energy than I have had in months. I’ve been cooking like a madman. Tonight I’m going to make a Gochujang Glazed Celeriac with black beans. We’ve just signed up for an organic veg box delivery service. My challenge to myself is to use up the entire box every week without wasting anything. Let’s see how that goes…