Mouth cancer: it changed far more than just my looks. But I survived.

Marking November’s Mouth Cancer Action Month from the Oral Health Foundation, Nikki Oliver, Volunteer Coordinator at Hampshire Hospitals NHS Foundation Trust, shares her story of how devastating this disease can be.

Three years ago, on 1st November, when MCAM was once again hitting the media to raise awareness of the growing cases of mouth cancer, Nikki was about to undergo aggressive surgery to combat the disease – for the second time.

I had a thudding dread that this time, treatment was going to be far more radical

Having undergone major surgery in 2011 it was clear that this time, it was going be far more aggressive because a third operation would be out of the question due to the fragility of my veins and blood vessels.

The first time around, we were hopeful that because the cancer had been caught fairly quickly, plus I was relatively young and fit, the surgery would be a successful solution. When I was again diagnosed in 2014, it was the support of family, friends and hospital staff, and my faith that helped me stay focused on getting through it, even though their own anxiety and shock was easy to see. It was surreal and I felt that I needed to reassure everyone, even though I was terrified. 

We don’t know why the mouth cancer came back

I always knew I was at risk the cancer returning; I was having regular checks, which of course is why it got picked up, and had I not it may have had a very different ending. Perhaps it was a couple of cancer cells that got left behind and subsequently developed; or it was a return of whatever had caused the first cell mutation – we just don’t know.

This time, the tumour was in my gum, over the jaw (hidden by the first graft). The surgery was going to be more radical and involved a 14-hour plus operation in which the left fibula (the smaller of the two leg bones) from my ankle to under my knee would be used to replace half my jaw – from my ear to my chin.

From confirmation of the diagnosis to surgery was a gruelling 10 days of scans and tests

In the lead-up to the operation, virtually every day I had to go into hospital to have endless scans to generate a 3D model of my head and to determine if the cancer had got into the jaw. A nuclear dye was injected into the lymph nodes the day before surgery to see if there had been any spread to the other side of my mouth. I also had to undergo a fitness test to ensure my body could cope with the arduous procedure.

I felt a certain numbness as if it was happening to somebody else

Lurching from one day to the next, I was mentally exhausted. But I was also hopeful: I was in the hands of Professor Mark McGurk, one of the best surgeons in Europe. In hindsight, it would have been very useful to have spoken to somebody who had been through the same surgery to understand the reality of what things would be like – this is something I would really like to offer to other patients should they wish.

Not being  able to kiss my husband, having to constantly repeat myself, avoiding certain foods or playing the flute – everything in my life has changed

There are permanent side effects as a result of the surgery: I have nerve damage to one side of my face and people initially think I have had a stroke, even after three years and having had plastic surgery.

Emotionally it can be hard

I have good and bad days, but despite everything, I consider myself to be incredibly lucky. I am alive and I feel blessed to be able to continue with my life and get on with things. Whilst the surgery was a big ordeal I did not need to have post op radiotherapy which would have made things considerably worse.

Nikki Oliver

Nikki Oliver before and after her surgery

I wasn't prepared for how difficult this would be for my family

My husband found it hard to deal with. He felt he had to be strong for me but wasn't very good at talking about what he was going through. This illness affects the people around the patient and I think everybody involved should try to have some kind of support group in place. I remember with great affection that he ordered all the staff to make sure I didn’t see a mirror for the first week when the swelling was at its worst.

Mouth cancer should be talked about more

I am surprised that mouth cancer doesn’t gets a lot of publicity, as cases are on the rise. But it can be treatable, especially if caught early; and the earlier symptoms are detected the more likely treatment can be successful and less aggressive.

Having good oral hygiene is important, but you need to be on the lookout too

I had always considered myself as someone who looked after their oral health; I had often been complimented about my smile, plus I never smoked. This shows that even with a good oral hygiene routine, we should all be checking for signs that something might not be right. I think my final message would be: “If you have a mouth ulcer for more than two weeks or your tongue gets stiff – go to your dentist.” 

Nikki Oliver is the Patient Ambassador for the Head and Neck Cancer Foundation (HNCF). This charity is devoted to driving awareness for, and the adoption of, ground-breaking head and neck cancer treatment. The HNCF researches aims to minimise the magnitude of surgery and the resulting impact on patients.