I’d had a lump on the top of my mouth for the best part of six months. I was aware of it, but it wasn’t giving me any pain or cause for concern, but it was just there. Lisa, being a nurse and the good wife that she is, kept nagging me to get it checked, so I went to the doctor to be on the safe side. He wasn’t too concerned at the time, but he referred me for a biopsy anyway.
They’d scheduled a follow up appointment when I was meant to be at work, so I tried to move it but they said it had been ‘red-flagged’ and was urgent- It was at that point we knew this might be serious.
At the appointment we were told they had found cancer in my salivary gland that affected the top of my mouth. It was in an awkward position as it was affecting the join between the hard and soft palette, and they needed to do further testing. That was the Monday morning, I went straight back to work after the appointment as I had to start a year 7 exam.
We decided to tell immediate family straight away.
I got a final diagnosis in May 2017, and they confirmed the cancer hadn’t spread any further. I then had a plan for treatment and what was going to happen next. I had a conversation with my Headteacher at work, and told her I really didn’t want to have to go round all the staff individually and tell them what was going on. Instead, I stood up at a full staff briefing and told them all together. I worked up until the half term holiday and was able to attend our end of year cricket match and Year 11 Prom. That was my last day at work before I went in for my surgery.
I knew that if I went into the “why me?” mindset it would take me into a dark place and that’s not a good place to be in to support my family and get through it.
There’s an element of dark comedy about the whole thing – before I went into surgery they were there drawing “This Arm” on me so they took the muscle graft from the right place- and it’s so surreal you do have to laugh a bit.
There were times when you would cry and be filled with worry, but there were other times when humour helped us through it a lot and I think this helped the children deal with it too as we were always very open, which helped them to feel secure in talking to us about their dad’s illness.
They did a full neck dissection to remove my lymph nodes, because that’s where the cancer could have spread to, and they removed the soft and hard palettes of my mouth and used a live transplant of muscle and skin from my forearm to replace it. They had to attach all the veins and nerves and everything and look through a microscope to join up all the tiny bits- it’s amazing really what they can do. I then spent a night in ITU on a ventilator.
I can remember exactly the time I woke up – 11.59am on 15th June. I was in intensive care and the anaesthetist was sitting on the end of my bed saying that everything had gone well.
I couldn’t regulate my saliva initially, and when I was lying on my back I felt like I was drowning. I couldn’t swallow properly and had a nasal tube in to feed. I’m a very active person and I felt very restricted being connected to so many tubes and machines.
They moved me onto the ward after five or six hours, but I still couldn’t breathe very well. My Sats kept dropping so I had to be put on oxygen, and an allergic reaction to something made me really sick. I hated all the tubes and wires around my neck, it felt very claustrophobic.
I didn’t sleep in 60 hours. I couldn’t lie flat because I couldn’t regulate my saliva and I couldn’t move my head and neck. I was given morphine for the pain, and it made me hallucinate – I remember my mum and dad coming into see me and I was convinced I could see the walls crumbling around me.
When I eventually did get some sleep it made the world of difference. I remember Lisa coming in and I said to her “I have massively f*****g underestimated things”.
As the swelling in my mouth went down I became very aware of hairs in the tissue that had been grafted in from my arm to my mouth, which is a pretty weird feeling!
The most difficult thing after getting back up on my feet was eating properly again. They started me off on a liquid diet, before I moved onto thicker milks and yogurts. They wanted to get me home quickly but it was a bit touch and go because I was struggling to eat.
You really start to appreciate the cutbacks being made in the NHS. You see how hard the nurses have to work, especially on the night shift. I never wanted to press the call bell- I always thought there was someone who needed attention more than I did and they were so busy. As well as wanting to get home, I felt like a burden and I wanted to get out.
Whilst Tom was in hospital I wanted to visit him as much as I could but I also wanted to see and support the children too, luckily we had lots of support from grandparents and friends but it did involve a lot of traveling between children and PRH! Florence, our youngest daughter, was too small to know what was going on and I worried she would be confused that both her parents seemed to have disappeared.
While we’d talked to the children about what was happening, it hadn’t occurred to us that they would come to the hospital or need to see Tom in that setting. After about a week our son Lucas, who was eight at the time, came down one night and asked when he could go and see his daddy. He needed to see for himself what was going on and wanted to see him in hospital. So, the next day Tom and I talked about it and took some pictures so they would know what to expect when they came to the hospital and they wouldn’t be frightened by it.
Lucas came on one day, and Maisie the next. I’d picked up some Macmillan leaflets about how to talk to children about cancer and these were useful, but really we felt we knew our children and how best to deal with the subject with them. We tried to use a bit of humour with the children and make sure they understood. I was really proud of them that they wanted to take responsibility and see their dad even though they knew he was ill. They dealt with it really well and I think that’s because we talked to them.
Biopsy: A medical procedure that involves taking a small sample of body tissue so it can be examined under a microscope. A biopsy is commonly used as part of the process of diagnosing cancers.
Doppler: A device that measures the continuous flow of blood to a particular organ or through a particular blood vessel.
Sats: Oxygen saturation is the fraction of oxygen-saturated haemoglobin relative to total haemoglobin (unsaturated + saturated) in the blood. Normal blood oxygen levels in humans are considered 95-100 percent and levels below 90% can lead to medical problems.