This arises from an invitation by Head and Neck Cancer Support Aotearoa to set down my recent experiences. A writer always asks, who am I writing for? It would be pointless to write for those who have already had treatment; most will have had far more rugged experiences than I had. So I am writing for those who are beginning the journey and their support groups. I hope you are as lucky as I have been. If you are not, I hope this helps you prepare for some of the waypoints on your journey. Best of luck.
It also occurred to me that I might be helpful for people who are training to work in the area. Since the age of twelve my ambition has been to be a teacher. I took great pleasure in signing consents that trainees could attend my treatments and welcoming them when I met them. Even though I was the subject, I felt I was still contributing to the education effort.
There is a third group I am writing for. It is to say thankyou to those who were involved in my treatment journey. There would have been over fifty professionals involved, plus a network of friends who provided additional support. I didn’t catch all your names so I wont name anyone. Because I usually met you wearing masks, I am unlikely to recognise you on the street. Forgive me for not saying thankyou in person then.
It was probably around March 2021 that my voice began to deteriorate, becoming more croaky. I thought it was nodules and my main worry was that my friends had increasing difficulty hearing me; they make a significant contribution to the profitability of the hearing-aids industry.
When I had my annual checkup with my GP in July, he was more alert to other possibilities, and immediately recommended my seeing an ENT specialist (at which point I learned they called themselves ‘otolaryngologists’ – gee whiz, I have enough trouble spelling ENT).
An important aside: I have a really good GP. He was with me all the way; I kept him informed electronically and he gave supportive advice. I was so lucky. The family pharmacy of Team Easton also gave great support.
It turned out the local DHB (Capital Coast, but I call them ‘Wellington’) was understaffed in the ENT area so I had to go private for the consultation. However, I could not get a booking for four months – 16 November; I’ll come back to that date. (I have been told that a couple of the ENT specialists had recently retired.) My GP, much more concerned than I was, suggested that I go outside Wellington and identified a couple of centres with spare ENT capacity.
As it happened, I was visiting Nelson and booked in with one of their otolaryngologists. The consultation was Tuesday 3 August, just over a fortnight after seeing my GP. The investigation involved using an endoscope – a thin, flexible tube with a tiny camera and a light – which goes up a nostril and down into the throat and projects what it sees on a screen. (It was done in his office with a light local anaesthetic.) It identified a ‘papilloma’ on the larynx. He contacted Wellington hospital and recommended a biopsy as soon as possible. (For the uninitiated, as I was, a papilloma is a tumor – it was sometimes referred to as a ‘wart’ – and the larynx is the voicebox. I had to consult Dr Google quite a bit and I had a well-retired friend who had been an oncologist and still knows more than I ever shall.) A Wellington ENT registrar saw me on the Thursday (5 August). Much the same thing as in Nelson but with moving pictures on the screen.
The immediate response was that I was to have a biopsy under general anaesthetic on Monday 23 August – vroom, vroom. As it happened, the country went into lockdown over Covid Delta and the anaesthetic pre-assessment was done by phone on the Friday. The surgery was cancelled and then reinstated for Tuesday 24. Whew!
I turned up at 8.30 on the Tuesday morning with the promise of being the first, to be followed by major surgery on someone else immediately after. The hospital suddenly decided we all had to be Covid tested and by the time that was done, the major surgery was under way so I spent the morning near naked in a side room reading a book. (My surgeon also seemed a bit surprised by the demand.)
(Covid forms a background to all the events I am reporting, but it is not necessary to detail it. I had the good fortune that measures dealing with it never got so intense that my support people could not come with me. They were great, particularly for going over things after to make sure my understandings were correct; I really should have taken more notes. The medical professionals seemed pleased that they were there.)
Then wheeled into the operating theatre. I don’t remember much except everyone wore masks and that the senior staff were distinguished by different kerchiefs covering their hair. I have never seen that in a TV show, but a jolly good idea.
I came out of the anaesthetic in the recovery room with a large Covid notice across from me which said ‘Be Kind’; hardly necessary for the staff were always that. I, of course, wanted to go home immediately, but they knew what they were doing and I waited around for a couple of hours; it took me a little time before I could concentrate enough to read. (Because I had been fasting since the previous evening, I was hungry and the hospital sandwiches even tasted all right.) Incidentally, all my things were next to me, and I learned that to pack them in future so what I really wanted – book and phone – were readily accessible.
Just before I was due to go, the surgeon popped her head around the curtain and asked me how it was. She said she removed a bit of the papilloma and it would go to a biopsy. She went on to say that she was a bit puzzled. I asked whether it was cancer – the first time I had articulated the possibility, even to myself. Her reply was a cancer would be very ‘unusual’. It was a good economical reply and I went home comfortable; ‘what, me worry?’ I don’t recall a major change in my voice after the biopsy.
I was to see the surgeon for a report back from the pathologists on the biopsy on Wednesday 7 September. At 8.30 the Tuesday morning before, I was rung and told I had to have an urgent full-body CAT scan (at a private hospital but paid for publicly).
Now I may be a bit of a medical naif but I knew a full body scan meant cancer and they were looking to see whether it had gone metastatic, that is into other parts of the body. Glug!
Fortunately, my GP sent me the scan report at 2.30 that afternoon and the good news was there was no evidence of metastasis, so I had only six hours to really worry. I was told later that the blood vessels which would have conveyed the cancer outriders are not very close to the larynx but, of course, had treatment been left they could have got into them and the rest of the body. Again, I was lucky.
That meant I would not need chemotherapy. I was so relieved, I did not think much about the cancer in situ and slept well that night. The following day, the Wednesday, I saw the surgeon.
She explained that I had a slow-growing carcinoma-sarcoma of the larynx, which was rare. In fact, she had never come across an instance in her career (and she was a very senior and experienced surgeon). I knew that meant she would have also looked up the international medical literature and found little; my subsequent Google search did not find much either. She then told me that a new surgeon had just arrived from England and she would consult him.
I had an MRI scan on Wednesday 15 September, but they did not find anything – good news!
The following day (16 September) I had a case conference with the two surgeons. I think the meeting was immediately after a regularly MDM (multi-disciplinary meeting) so it is likely my case had been discussed by a lot of doctors.
The second surgeon came from one of the few centres in England which had experience of my condition – it was a very rare one. (I saw somewhere it is one in ten million; does that mean I am only half a New Zealander?) My first surgeon explained that the new one had arrived so recently in New Zealand that, despite 20-odd years of experience, he was not yet New Zealand registered and would have to be ‘supervised’. So I had for the operation two senior surgeons, two anaesthetists and at least two registrars. I hope it was a good educational experience for some of them. I wouldn’t know, I was out to it.
Just before the actual surgery on the Tuesday 21 September (they were in a hurry, weren’t they?), the English surgeon talked to me about what was happening. I remember the surgeon reading the riot act; if things went wrong I could lose my entire voice box; we joked about Stephen Hawkins. He mentioned that he had talked to his mentor – the person who trained him – at the Royal Marsden in London, which is THE cancer centre of England. They were taking this all very seriously. (The anaesthetist also came into see me. Earlier I had had a blood test for him to check my innards; throughout the process there was regular assessing of my blood pressure, temperature and weight.)
Because it was a bigger operation, they required me to stay in recovery overnight; read another book.
I don’t know how much they took out, but I could hardly speak for a few days. I wrote down what I wanted to say, a sort of reverse of what happened to deaf Beethoven who people spoke to by writing. However, my conversation books will not be published; they are near incomprehensible. Fortunately my ability to speak began to return.
When they do this sort of operation, they take some samples from the margins of where they cut and the pathologists look to see that there is no cancer there. There was not. However, at the post-op review the English surgeon said a further biopsy had to be taken; he had warned me earlier. As best as I understand it, there was an ‘awkward corner’ they wanted to check. Apparently the cancer had not only got into the right side of the larynx but also into the ‘anterior commissure’ which ties the two sides together. I think the six-week delay was because they wanted the main operation to heal sufficiently.
The day-surgery, on 1 November, was much like the first biopsy (but this time the sole surgeon was my English one; his registration had come through). The pathology lab confirmed there was no evidence of any remaining cancer.
So all the surgery was over a fortnight before my initial, and now cancelled, booking to see the Wellington otolaryngologist on 16 November. Had we gone down this three-plus month slower road, the cancer may have got across to the left side of the larynx or into the blood stream. I’ll have more to say about this later.
However, there could be residual cancer smaller than the surgeon’s ‘knife’ – it is actually laser surgery these days – could locate. So I was shifted across to the care of a radiation oncologist. It was put to me that the surgeons pick up the rubbish and the radiation oncologists sweep the floor after them.
The basic idea is to pound any residual cancer cells to death with radiation. Because those cells are tiny, the radiation needs to have a very narrow bandwidth. That requires it to be high energy. A linear accelerator is used to get the radiation up to the required level. (The most famous accelerator is at the Large Hadron Collider near Geneva, which is very high energy because they are after very small particles.) Wellington Hospital has three (we did not see any Higgs bosons).
Apparently, the six weeks of therapeutic radiation exceeded the normal dose of radiation most people experience in a lifetime (providing they don’t get in the way of the Large Hadron Collider).
So off to see the radiation oncologist, who ordered six weeks of treatment – 28 sessions because it was across Christmas and two weekdays were public holidays. He also said that he had not met anything like this particular case before. I do like experts, like him and the two surgeons, who are so good they can be honest about the limitations of their knowledge. He also mentioned there was a possibility that the treatment could induce another cancer by upsetting a healthy cell. The chances of that were about 1 percent by the age of 100; I am 78; I said I would take the risk.
Before the radiotherapy I had to have a ‘mask’ made for me. The term is slightly misleading because it is a light plastic frame from the top of the head down to the shoulders with a network with plenty of holes for breathing and seeing. Its purpose is to hold the throat in exactly the same spot for each treatment. Radiotherapy is precision bombing, targeting the same very small area, near the Adam’s apple in my case, 28 times. (Chemotherapy is carpet bombing.) They gave me the mask as a souvenir when the treatment finished. It is mounted in my office.
The bombing only occurs for a short time. First, they check they have the target exactly right, rotate the gun to the right at about 2 o’clock for one dose, to the left at 10 o’clock for a second. I actually spent more time waiting my turn, observing others also waiting who were in much more dire straits than I was.
In fact it is all very routine except for the first session. They asked me what music I wanted to listen to. ‘Beethoven!’ But I found my beloved’s Sturm and Drang to strong and switched over to the sweet sunshine of Mozart. I’ll never hear him again without remembrance of the bombing runs.
In the first session I found the mask a bit tight. Put up hand. Loosen it by a couple of millimetres and the session went fine. The following morning I woke up with a kind of post-traumatic syndrome of the memory of the cramping – I am mildly claustrophobic. I felt awful and feared I would not be able to last the course. So I turned up on the second day expecting this would be the last if I made even that one. In fact, I had no difficulties. (One trick was to come in a black singlet to free up my shoulders and it was easier to manage the undressing. I did wear a jacket in public; I did not want everyone thinking that Fred Dagg was loose in the hospital.)
So it became a six-week routine. Wait. Go in. Cheerful welcome. Music on. Identification questions. Details up there on the computing screen. Lie on bed. Mask locked on. Radiologists leave the room (to minimise their exposure to the radiation). Focus, zap, zap. Come back. Take the mask off and within five minutes you are free till the next day. Once a week they weigh you. The radiologists were lovely. I’d be proud if any one of them was my grandchild.
This was a very high-tech operation, except when you got up from lying on the bed you use a rope to pull yourself forward (after cleaning your hands). Old ways can be best but, golly, an old hand told me what radiotherapy was like fifty years earlier. Glad the cancer waited.
The Cancer Society provided a daily driver who picked me up from home, delivered me to the hospital and the reverse afterwards. Thankyou. During the two-week Christmas break when the radiotherapy continued, friends who did the same could use the Society’s now empty car parks. (The Society, which also provided some useful non-technical pamphlets, is perhaps the best example of all the voluntary activity around the hospital. Would it have been as widespread if the neoliberals had had their way in the 1990s and turned hospitals into a profit-seeking businesses?)
The radiation oncologist (or a registrar when he was on holiday) saw me once a week to check I was OK. There were three auxiliaries for support: the nurse who was also available at the waiting station (there was always a registrar available too but I never had to use that service); the dietitian – to lose weight while you are under treatment is a signal you are not thriving; and the speech therapist, who made an even bigger contribution after the treatment, helping the voice to recover. One of her exercises was blowing through a straw into a milkshake – childish fun.
After about two weeks of radiotherapy they asked me to go onto eight tabs of Paracetamol a day (two every six hours). The effect was miraculous for I reverted to how I had felt before the radiotherapy began. (I was put on other drugs at various stages. I’ve not detailed them because different doctors may prescribe differently. I’ve mentioned Paracetamol because used properly it is such a safe pharmaceutical and yet my response was rather remarkable in the circumstances.)
However the bombing slowly wore me down. Apparently there are few sensory nerves in the voicebox to tell what is going on there, so I was not particularly aware of the frying of the larynx. But it was hard to remain cheerful, I was getting increasingly tired and sleeping through the day; I was writing less.
The precision bombing of the finest airforce will still cause collateral damage. Mine included sunburn around the neck, a loss of appetite, a loss of taste and a falloff of the strength of the voice till it became a whisper (unless all those hearing aids simultaneously failed).
Once the radiotherapy finished, there was a recovery, although not immediately. The sunburn worsened for about four days but it had almost gone a fortnight after. It is likely that some lower neck areas will be permanently bald and some of the skin there still feels baby-like. (I would not recommend linear accelerators for those with cosmetic ambitions.)
Two months after, my appetite was still down, which may be no bad thing for somebody with my BMI. I’ve noticed I am consuming a lot more milk-based products – may go with the baby-skin.
The taste has not fully recovered either. A particular disappointment is that I have not enjoyed a glass of wine since before Christmas. It still tastes like muddy water. A friend pointed out that while it is a miracle to change water into wine, I have performed the opposite. (If this continues much longer, a couple of vineyards may go bankrupt.)
The whispering voice was a great frustration. But two months on it has returned to where it was before the radiotherapy, so my friends tell me – you never hear your own voice properly. I take it that means the larynx is no longer fried.
However, chunks have been taken out of the cartilage. I am told that it may take until the end of the year for it to strengthen to its full capacity, but not necessarily to the level it was. One surgeon told me I would never be able to sing opera again (again? hadn’t in the past). I asked her about doing the Humming Chorus.
So nine months on after my GP went on alert, I am discharged and back to where I was. Except they are ‘confident’ they have got all the cancer. I asked whether the prognosis was ‘good’. They said ‘very good’. There will be ongoing monitoring – initially every three months.
This was quite a learning experience for me. Looking through my notes I observe how on occasions I got things wrong. Never seriously; just that sometimes I did not understand where the journey was going or how long it would take to get anywhere. Hope this helps others.
Thus far you have been with the writer and the teacher. Another of my professional dimensions is that I have long been involved in public policy including health economics. Here are a couple of lessons which the journey highlighted.
Those who most need Head and Neck Cancer Support Aotearoa have had a rougher journey than mine. But, like so much of New Zealand’s responses, it is providing ambulances at the foot of the cliff. They are needed – sometimes desperately – but we rarely lift our eyes to see the need for a fence at the top.
Dr Google (actually the Australian Cancer Society) tells us that risk factors for throat cancers include:
excessive alcohol consumption;
Epstein-Barr virus (EBV);
Human Papillomavirus (HPV);
family history of cancer.
I have long worked in the areas of tobacco elimination, where we have made a lot of progress and alcohol moderation, which remains a problem among some groups. I know little about the Epstein-Barr virus which appears to be a kind of herpes. It is widespread and Dr Google says ‘you can help protect yourself by not kissing or sharing drinks, food, or personal items, like toothbrushes, with people who have EBV infection’. Cor! They are promising there will be a vaccine based on the mRNA approach which created the Covid vaccines, but don’t hold you breath; stick to your own toothbrush.
HPV can cause genital warts and warts in the throat as well as cervical cancer and other cancers of the genitals, head, neck, and throat. A HPV vaccine has recently become available. The evidence I have seen suggests big gains (reductions in the likelihood of cancer) from its use for both women and men.
The HPV vaccine rollout focuses on the young before they get it. There does not seem to be much public awareness and large sections of the target population have yet to be reached. We need to do better. If I have the mathematics right, the vaccination level is such that the virus wont get out of control if we confine ourselves to two-and-a-half sexual partners per lifetime.
But prevention is insufficient. There are other factors causing cancers. We do not know what caused mine – it may have been a stray cosmic ray having colliding with a cell. So we still need to think about early detection.
To repeat, I was lucky, because the health system got me early. Had I to wait those extra four months for the first private ENT consultancy or even longer for what the public system could provide, who knows where the cancer might have got to. Certainly, my treatment would have been a lot rougher.
I am tempted to propose that we set deadlines for how long one should be on a waiting list when there is a possibility of cancer. Exceed that time and there is an obligation for the public system to pay for a private consultancy. Apparently, the Irish have something like this already; they ship people around the EU to meet their deadlines. We used to have target deadlines for cancer and for various other illnesses but the DHBs failed to so often meet them, they were scrapped as meaningless.
Before you say such a policy may cost the earth – true – think about my case. Had the identification and treatment been delayed, the cost of the additional treatment may well have been horrendous both financially and personally.
Nor should we overlook my good luck to have an alert GP, to be visiting family in Nelson and to be able to afford the private consultation. There are many more vulnerable to cancer who have no such luck.
Sure, my particular condition is rare. It may become more common because of an aging population. The health system is already dealing with too many such conditions and not getting them early enough. The really good news from my experience is that when it fronts up, it does so superbly. Thankyou.