Patient ambassador

Nikki Oliver, Patient Ambassador for HNCF, shares her own story of how devastating this disease can be.

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

In 2014, Nikki was about to undergo aggressive surgery to combat mouth cancer – 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 everyone's 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 that I was at risk of the cancer returning; I was having regular checks, which of course is why it got picked up, and had I not, it might 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 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.

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 get 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 it is that 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.”