Feb 28, 2023 – anticipating 6th cancer surgery
Tomorrow I go into the hospital for my 5th head and neck cancer op. It will be one of my smallest ops but I’m old now and I’ve had one huge surgery and three smaller head and neck ones (for non-cancer purposes) since 2021. It’s all a bit much.
My six diagnoses
1996: outside GP surgery on Old Taupo Road, Rotorua, reading a printout given to me by a very inexperienced locum. Ovarian cancer with suspected metastasis to the liver. (This was from an ultrasound after my abdomen became enormously swollen.) The locum didn’t tell me – just handed me the paper to give to the ER if I had to go in during the weekend. (I did.)
2007: Rotorua again. Phone call from a Waikato oral surgeon asking me to go and see him after he had removed a painful years-old lichen planus lesion from my tongue. “Is it bad?” I asked. “How bad is it?” He thought it was unfair to tell me the diagnosis over the phone but I insisted. There was cancer in the tissue.
2009: Whangarei. Feeling okay but had lost a lot of weight without trying. Had a routine check-up at ENT. Surgeon took a biopsy and a week or so later I received an appointment to go in again. I took my husband because I knew it would be bad news. “You knew, didn’t you?” he said.
2013: Auckland, Christmas Eve. At a routine checkup the surgeon saw a “manky patch” in my cheek and biopsied it. The only symptom I’d had was unexplained toothache. Long delay in biopsy results. Son rang the surgeon on Christmas Eve. Cancer. Same big surgery as 2009. This was my lowest point. I was desperately depressed over the summer as I waited for the “holidays” to be over.
2021: Auckland, September – I had a definite symptom this time, a one sided sore throat. My biggest tumour. My loveliest surgeon.“You have an ulcer on your tonsil.” I asked if it was a cancerous ulcer and he replied that it looked like it. I knew there and then.
2023: Auckland, February. After lots of dental work a vague mention of a sore cheek which had been biopsied at the end of 2021 with no cancer found only thrush. Three days later after this recent biopsy I got the result and yes, there was thrush but also cancer. This time I was gobsmacked. I asked him if this was the end. “I don’t have that information,” he said. “It’s superficial. It’s not as if it’s a mass.” He said he could take it out under local anesthesia in his office but later decided to do it properly in the theatre under local anaesthetic with a skin graft. Neither one of us wanted me to have another big surgery.
I think I was lucky it was caught early. Time will tell.
Right now I am day 5 or 6 after surgery and doing quite well. The swelling has almost completely come down and I’m looking forward to stitch removal in 2 days time.
What I want to talk about now is “surviving recurrences”. Some head and neck cancer patients suffer from recurrences that have not spread elsewhere in the body but are new primaries. I’m in that camp. Any recurrence is deeply upsetting but as is the case for me, there is still hope of achieving a state of “no evidence of disease”. I suppose my case illustrates that a cancer diagnosis is not a death sentence. There are commonalities but each individual patient is different.
My ovarian cancer was Stage 3c but was completely cured. It changed my life in subtle physical and psychological ways though. I think it toughened me up.
I’ve got better at coping with these HNC recurrences over the years. The first two were very disruptive because I was working and it was hard being a teacher with compromised speech or having to go awol just before the exams. The third one was so very hard because my husband was fatally sick too. That was the worst but the pain was eased when one of my sons came home from the UK to support me.
Radiotherapy gave me 7 years cancer free (it might have been the radiotherapy that did it) but I was surprised to get diagnosed again with a tumour in my throat – far from the original tongue cancer. What made this bearable was a lovely and expert surgeon. And great support from the medical staff who knew me well, partly because of the charity I help run. Having trust in the surgical team can be a big factor in coping with diagnoses. Continuity of care is helpful.
The recent diagnosis last month was a shock but I’m so hardened now that I was able to pull myself together and keep going with my life until the day before the surgery. I keep busy by doing lots of volunteer and community work. I think the best way to cope with one’s own troubles is to help other people.
Something I’ve noticed though is not despair or depression such as I felt after the ovarian cancer diagnosis and that third HNC one. What I tend to feel now is anxiety before procedures, and that includes the three non-cancer removing surgeries I’ve had since 2020.
Waiting for hours in the Transition Lounge gives me plenty of time to worry. The other day I was panicking about my blood pressure. I hadn’t taken medication since my op last year because without meds in hospital my BP was fine. I reckoned I should have had it checked though and when it was criminally high in the Transition Lounge I worried that they might not be able to operate on me. Even when the nurse said it would be okay because I’d had a recent healthy ECG, I still focussed on my BP as a thing to worry about.
Funnily enough, after the op when I was able to see my obs results, my BP was perfectly fine. And after the op, with all the discomfort it caused, the anxiety was gone, as if it had been cut out with the little tumour.
The moral of the story?
I don’t know what the moral of the story is. I guess I reconciled myself with my mortality after the ovarian cancer event. That was the most life threatening of all my cancers. Now at 76, I am just grateful for each energetic year. I’ve got my affairs in order – sort of – and just want to live life to the max while I can.
Another message is that cancer symptoms can be confusing.
Ovarian cancer – weight loss while at the same time developing a distended abdomen.
HNCs – long standing ulcer on side of tongue, unexplained toothache, unexplained weight loss, one sided sore throat, bitten area in cheek.
It is comforting for other people that there are better treatments now for ovarian cancer and HNC is pretty rare.