Location: London, UK
Diagnosis: Osteosarcoma (Upper Jaw)
I never thought I would get cancer, no one does. But in fact it's more than that. I never even thought about cancer, let alone whether I would get it or not.
The weekend before I went to get the results of my biopsy, I was on holiday with a group of friends. "It might be cancer" I joked as we sipped wine overlooking Lake Como in Italy.
"Oh don’t be silly" they said. I wasn’t, but I get now that it was a reality they didn’t want to have to face at that time. That’s not to say I suspected it was cancer, not at all. But I wasn’t going to deny that it was a possibility. If I’m anything, it’s a realist.
It was a dental specialist that told me I had cancer, in a room high up in Guy's and St Thomas' hospital, a beautiful view of the London skyline. He apologised a lot. I said it was fine, everyone gets cancer these days. He called me stoic. I liked him. I still smile when I see his name copied in on my letters from the hospital – I hope it doesn’t annoy him. People talk about these moments of being given their diagnosis – of being in tears, hugging family members, big emotional landmarks in their life. I just smiled, happy to know that we could now move forward with fixing it.
I wasn’t upset, I wasn’t angry. I suppose there was a feeling of relief with having a diagnosis – finally knowing what this lump on my face was and getting a treatment plan to fix it. But what a treatment plan it was.
A week later I had my first appointment with my Oncologist, and a week after that I started chemotherapy. They move so quickly once the word ‘cancer’ is uttered. I didn't really have much time to think about it, I think I just felt lucky to have found it and to have a team of people working on it. It had been two months since I first noticed the lump in my top jaw, just under/behind my nose, above my teeth on the right hand side of my face. It wasn’t huge, but big enough to notice its presence. The dentist had sworn to me it was an abscess (I didn't believe it). He had previously refused to listen to anything I said and physically pushed me into the chair, killing my perfectly healthy tooth on the spot while I sat there balling my eyes out, the dental nurse holding my hand. I knew it wasn't an abscess, I knew my tooth wasn't dead (up until the point where he killed it), but you’ve got to trust they know what they’re doing. This led to 2 months of him and the root canal specialist trying to cut into the 'abscess' to drain it and being so surprised when it wasn't working. Eventually they referred me to the specialist who took one look at it and knew it wasn't an abscess. Me too mate, me too.
I suppose you can’t expect a dentist to be able to diagnose a rare type of cancer they might only see once or twice in their lives, though I find it interesting to know that it is policy in Australia for dentists to refer anyone with an abnormality for scans for cancer. I suppose with a free healthcare system like the one we have in the UK, it’s hard to justify doing such things unless absolutely deemed necessary.
Chemotherapy was a bit of a shock.
It wasn't what you hear of, the old one-day-a-week job. No, mine was to be hooked up for 24 hours a day, 5 days/week, for 3 weeks in a row, then 2 week off to recover, rinse and repeat. 6 cycles over a total of 7 months. I would have gone mad being stuck in a ward all that time, but I was lucky that during my treatment weeks, I was to be living in the Cotton Rooms, the NHS 4* hotel next to the Macmillan Cancer Centre at UCLH. The Cotton Rooms were amazing – opened in 2012, and the first of their kind in the world. They were so lovely and comfortable that it didn't really feel like I was ever in hospital. I popped into Ambulatory care once a day to have my backpack refilled with water or chemotherapy drugs, but the rest of the day my time was my own and I had a hotel to hang out in. Not to mention the staff were all lovely. Occasionally the alarms on my chemotherapy bags would go off in the middle of the night and I would have to go over to the main hospital tower. They rarely knew how to work the pumps, but we always got there in the end. I liked to think of it as team work.
I lost my hair almost immediately but it didn’t bother me – being the independent, stubborn person that I am, I exclaimed that I wanted to shave my hair anyway. I had a hair shaving party with some of my friends as they lopped off my hair. You lose all control when you get a cancer diagnosis, and any small things you can do to try and keep hold of some of that control can make a huge difference when it comes to coping with the changes forced upon you. For me, doing this was important.
My chemotherapy made me neutropenic and occasionally in my 'rest' weeks I would end up at the local hospital. It happened twice and it was always horrendous. They couldn't understand why certain counts in my blood were so low and no matter how many times I told them it was expected and that it was the chemotherapy that did it as opposed to anything wrong with me, they kept making rash decisions based solely on numbers and caused me a lot of unnecessary pain and distress. They also didn't know how to use my PICC Line and I had to help teach them. It's funny how quickly you become an expert in yourself. Eventually the Oncologist would come in after the weekend, apologise for what I'd been through and discharge me to the comfort of my own bed.
After 7 months of chemotherapy, they rushed me into surgery because my surgeon was going on holiday. They didn't think I would be strong enough, a mere 3 weeks after finishing chemo, no one ever had been ready that early before. But it turned out my body didn't want to wait – it passed all tests and was itching to go. My parents booked their flight to come over from Australia, just days before my surgery when I got word that it was going ahead.
I was not prepared for how massive the surgery would be. But then again, I don't really know how you could properly prepare someone for the enormity of having half of your face removed.
Getting information for what was going to happen in the surgery was not an easy feat, as no one seemed to want to commit. Perhaps they were as unsure as I was as to what they would face when we got in there. Many frustrating conversations with members of the surgical team where I was told a whole lot of conflicting information. There were a lot of unknowns, and many things had the potential to go wrong. I was mainly just looking forward to getting it done and finding out what I had to work with when I woke up.
On the eve of surgery I was excited, the morning I went in, I felt a buzz in the air.
After a 16 hour surgery (how do they concentrate for that long?!), I woke up; confused, angry, not being able to talk because of the tracheostomy tube in my neck allowing me to breathe, and in a lot of pain. My memory over the first couple of days is very patchy thanks to the count of anaesthetic and sedation, and I would regularly fall asleep mid conversation. I'm also not a great patient as, although I am gracious and generally happy and non demanding, I am also staunchly independent and want to do everything myself. I had many exasperated nurses throwing their hands up at me as I attempted to do everything myself as opposed to letting them help me. Note to self, learn to let go occasionally.
They had cut out most of my top jaw (along with the tumour and most of my top teeth) and the back of my nose and behind my cheekbone, then cut out my shoulder blade and put the bone in where my jaw used to be, using the skin and muscle from my back to create the new roof of my mouth, connecting it up to the blood in my body through a hole in my neck, using the blood supply taken from my back. They called it the ‘flap’. It had a name, like a monster in a movie; The Hulk, The Joker, The Flap.
In hospital I started to progress with recovery, when five days after surgery the 'flap' failed and they had to rush me back in.
It was a Saturday morning, all hands back on deck. To this day they don’t know how or why it failed. But they managed to get me in just in time and save it – and it was a tight race against time. My Dad says this was the longest day of his life – they had told my it would be parents 4-6 hours but it turned into a 10 hour surgery, this time taking the blood supply from my leg, which was put in through the access hole cut in my neck and connected up to the flap to keep it alive.
This one decided it was happy, and I spent the next week trying to recover and slowly working towards getting my catheter, drains, and tracheostomy out. The tracheostomy was hell, It stopped me from talking, and it irritated my throat like crazy. I was also very unprepared for what was going on with it and they seemed to be doing things with it all the time; shoving things down it, changing the tubes, choking me. Thankfully my Physio was amazing and she helped me through it.
After 2 weeks in hospital I was finally discharged. The swelling was insane. My face didn’t look like a face.
I couldn’t close my mouth, I couldn’t drink without spilling it down me. My amazing surgeon decided to take out my feeding tube on the day they sent me home. That was amazing, but it did mean it was difficult working out how to get enough nutrition. But I got there. My parents stayed for 2 months, so I was lucky to have them looking after me.
Four days out of hospital I was at the pub. I looked ridiculous, but I wasn’t going to let that hold me back.
For months after surgery I couldn’t get through the day without naps. It was hard going. I took photos every couple of days post-surgery so that I could have a visual record of the progress I was making, even when day-to-day it felt like I wasn't getting any better. I cannot recommend enough doing this post-surgery, especially if swelling is involved. Even if the visual isn't relevant, writing down one piece of progress each day, no matter how small, can do wonders for your sanity. I did both.
I’m now over a year post-surgery. In a way I look back on that poor in pain, swollen person as if it was someone else. I think our brains have a way of coping with these sorts of trauma by distancing ourselves from the person we were then and the things we went through.
I’m patiently waiting for teeth, life isn’t easy without them. A few weeks ago I went in for surgery to drill three metal rods through the new roof of my mouth and into my cheekbones - these will be anchors for the new teeth. Although it is nothing like what it was last time, being thrown back into swelling, liquid diet, upright sleeping and pain are all quite triggering. I still can’t breathe through my nose, which is hell especially for sleeping and dental work (like when they fill your mouth up to make moulds for the implants…). I don’t know if I’ll ever be able to breathe through my nose again which scares me, so I try not to think about it.
They never prepare you for the fact that it’s the post-cancer part that is possibly the hardest - when you are let go and you start processing the trauma you’ve been through now that you have some distance from it.
How do you come to terms with having a different face and people always asking you what’s wrong with it? And being expected to just slot back into the life you had before that might not fit you anymore? And not being as physically capable as you used to be even though everyone is telling you that you’re ‘all better’? Also cue panic attacks relating to the purpose and meaning of life, now that you’ve faced your own mortality…
I don’t have the answers, but I do have the answer to how best to get through it – with the army that is the wonderful cancer community at your side.
Although we wish none of us had to be part of it, the power of ‘me too’ is unrivalled, and just knowing that you’re not the only one going through or feeling what you’re feeling is worth everything.
It helps you cling to the last thread of your sanity, like a safety rope leading you through the darkness. Unfortunately you have to take the good with the bad, and opening your heart up to the cancer community means also opening it up to ongoing bad and hard times of others, even as you’re just trying to find your feet. But if you’re anything like me, you will decide it is worth it to know these people and be in each other’s lives.
One piece of advice:
There were weeks when my chemotherapy was pushed back because the counts in my blood weren’t up to it. I even couldn't finish one of my three chemotherapy drugs because my kidneys started failing, and that was a terrifying thought. Then, through talking with the friends I had made who were having treatment alongside me, I found out they couldn't finish all of theirs either. It turned out that it was common, and we were given such an intense form of chemotherapy that it wasn't expected we would finish all of it.
I think one of the biggest lessons I have learned through all of this is that things don’t always go according to plan, and that’s usually fine. There are usually more options, and as long as you have options, things are looking ok. You won’t be the first to be struggling and you certainly won’t be the last.
If you arm yourself with the knowledge that things not going according to plan is entirely to be expected, you’ll be better set to face hiccups along the way.
Disclaimer: the opinions expressed in this publication are those of the authors. They do not purport to reflect the opinions or views of Brave Collective. While the information is considered to be true and correct at the date of publication, changes in circumstances after the time of publication may impact on the accuracy of the information.