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Tom: “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. I had to give a big talk at work the day after and I wasn’t quite sure of what the biopsy would involve until I walked into the room and the doctor waved a disclaimer form in front of me- I remember looking over at the nurse at the time and my face must have been saying ‘hang on, I didn’t sign up for this!’.
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.
Lisa: “We knew we had to tell the kids. We sat them down and told them as much as they needed to know at that point and reassured them they could ask any questions should they have any. The children listened, but then it was just “OK can we go back outside now?” They did ask questions further down the line but they were OK initially.
Tom: “We told my mum and dad; I’ve only seen my dad cry twice in my life- once when Leicester City won the league and once with this. The reaction of other people was the worst part of the whole thing.
I went for a CAT scan and various tests, but life really carried on as normal. We went to work, took the kids swimming, and nothing really changed, I didn’t feel unwell at all so everything was a bit surreal. We were getting letters almost every day for different tests and scans but other than that it was nothing different.
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’d been booked in for the operation at the Princess Royal Hospital (PRH) in Telford, on June 14th. I’d been booked off work until December, and I struggled to hand over bits of work. I love my job and it was hard accepting that I wouldn’t be there.
I was admitted the night before, and this is when the reality of my situation hit me. Life had stayed so normal up to this point but now sitting in the hospital waiting room it became very real.
Tom: 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.
Lisa: 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 dads illness.
Tom: They put us in a side room, which was nice in one way, but it felt a bit isolating also, especially when Lisa went home. I took 10 days off from looking at emails, facebook and social media- I wanted to focus completely on getting better.
At 8am the following day the surgery team came in and went through again what was going to happen. I was then wheeled down to theatre for the 10 hour operation.
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 anaesthaetist was sitting on the end of my bed saying that everything had gone well.
Lisa: He was very tearful and sick that first 12 hours after he left ITU, neither of us had considered the effects of the anaesthaetic, we had spoken to people in the clinics we attended prior to the operation, but it was always discussing the effects on the mouth after the operation and how well you could speak and eat etc, that first 12 hours was horrendous to be fair!
Tom: 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”.
Lisa: In the first few days he was really panicking, and I’d started to feel like he had lost all hope, and all I could think was “Things should be getting better, and they aren’t”. Hearing him joke about underestimating things was a relief, I could see my husband coming back again! Those first few days were hellish, but eventually he turned a corner and things started to get better.
Tom: I’d promised my daughter Maisie I’d come home on the Saturday, because the Lions were playing New Zealand and we were going to watch that on TV together. I’m a target driven person and I set myself mini targets through the week to get myself ready to go home- I was going to make it to the toilet, then do a lap of the ward, or get myself a glass of water.
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.
On the Friday morning I did ring the bell and asked the nurse to give me as much yogurt as they could, and that was going down OK. The dietician came over and gave me mashed banana and I really hate banana! But that was going down because I just wanted to do whatever it took to get home.
Dr Bhatia, my surgeon came to see us again- he was really brilliant and was fighting my corner to get me home quickly. That was the point where they started taking bits out of me. The tube came out of my nose, which was a relief, then various bits from my neck and arms. They’d put a silicon membrane on my arm to regenerate the skin, and that came off so I saw the wound left by the tissue graft. It was an experimental technique and the doctors were quite excited about it so I had about eight of them gathered round every time it came off. I also had a Doppler in my chest- it was two pads that I thought were just monitoring me but when they removed this I was really surprised to see a bunch of wires coming straight out of my chest- I had no idea they were in there.
In the end I was able to go home on the Friday afternoon and on the Saturday we watched the rugby together on the sofa.
Lisa: 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.
Tom: Initially I didn’t want them to see me in that state in hospital, but after the first week I felt able to have a visit from them, 10 days was a long time for us to be apart and I think it helped them seeing for themselves that I was ok.
Once I was at home I had weekly follow ups from the dietician for two months as I started to bring my eating back to a more normal pattern. I needed to get back to being active, so I started by walking around the village. I went for a run for the first time on July 3rd, and kept in touch with work through events like the Sports Awards- I even went in for a full day in the last week of term.
My dad and I wanted to do something positive, so we ran the Severn Bridges 10k in Shrewsbury together in September. I went back to work the same month, and I purposely put myself on the agenda to speak at my first whole staff meeting back. My voice is such a big part of what I do, and I was concerned about sounding different after my surgery. That first time went well and I got my confidence back over the next couple of weeks.
This type of cancer normally affects older people, and being younger I recovered more quickly than most. My big worry was that it was hereditary and might affect my children but I was assured that it’s not; I was just unlucky. It’s only in the last month or so that I’ve really had time to reflect on the whole thing- you go into a really intense environment where your cancer is talked about every day, which then drops to weekly appointments, and then less often.
Lisa: It was during the drives to work that we both had time to think things through and sometimes it would really hit me when I was in the car on my own. Those drives to PRH over the first few days were tough too, but turning the music up while having a good hard cry helped get through it.
Tom: I no longer need to see the dietitian now and Im going to have laser surgery to get rid of the hairs in the roof of my mouth. I cant taste things as well any more, and I struggle to eat some meats but in the grand scheme of things, it’s a small price to pay.
I don’t want my diagnosis to affect the family any more than it needs to. I’m work driven and I wanted to get back to it as soon as I could. I’m young and fit enough to get over this quickly and normalise our lives again as far as possible. I’m very proud of how we’ve coped as a family; I feel very fortunate.
We’ve still got a box of all the letters and bits from the hospital- we’re going to burn them all when it’s all done! There are still moments where it hits you, what you’ve been through but then I look at where I am now and am so fortunate that it was caught and treated when it was.
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.
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Rachael shares the highs and lows of her cancer journey which started at the age of 33. Her honesty about her fear of not being able to breathe, but learning not to panic gives a great insight into her experience.
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