Fred's partner, Olwen, tells Fred's story.
It was mid 2015. Fred (68) was a bit irked. He had a sore on his tongue at the side near the back. Eating chocolate hurt it and it was getting annoying. He told the GP about it at his three monthly appointment. She took a look, and suggested it might be a fungal thing. She gave him a prescription for something to put on it.
When the prescription was filled the information sheet said you should not use it if you had an allergy which sounded a bit much like the polyester resin Fred had had a reaction to. Consequently Fred didn't use it. At the next doctor’s appointment in September he raised it again and the GP said she would have expected it would heal by itself normally and referred him for a biopsy at the hospital.
He had an appointment at the end of October at surgical outpatients at Wairau hospital in Blenheim. The general surgeon we saw looked in Fred’s mouth and declared that a biopsy from the back of the tongue was beyond her pay scale. Luckily an ENT surgeon was visiting from Nelson and was able to fit us in and remove a sample of tissue.
We had a follow-up appointment with the ENT surgeon the following month when we were told that it was a T1 squamous cell carcinoma and needed to be removed. This would mean cutting a chunk out of Fred’s tongue. He was scheduled for urgent surgery.
The next week (December 1, 2015) Fred was in surgery at Nelson. He was able to leave the same day, with a prescription for mouthwash and he felt fine.
Our next appointment was a few weeks later and we were told that test results showed that all the cancer had been removed. However they preferred to take a little more. The surgeon was going on holiday so this would probably be in February.
We were called in January and offered surgery with a locum surgeon at the end of the month so two months after the first surgery we were back in Nelson. Again Fred didn’t stay overnight in hospital.
Three days later Fred slipped on a tiled floor at home and broke an ankle. He spent a few nights in hospital and had his ankle in plaster.
We got an appointment for a follow-up ENT appointment in Nelson. I phoned and asked if this could be in Blenheim because the broken ankle made travel difficult. The surgeon saw us about three weeks after the second surgery and said that all was well. We saw orthopaedics for Fred’s ankle several times and ENT again in April.
Sometime in May Fred felt ill while we were shopping. Because we were almost next to the medical centre I took him there. The doctor looked him over and was going to call an ambulance to take him to hospital but I said I would drive him. They suspected heart problems, monitored and did a scan. They found nothing and he went home that evening feeling better.
When Fred saw the ENT surgeon in April he had felt Fred’s neck. Fred wondered about that and about the beginning of June noticed a few little lumps near the base of his neck on the left side. We had an ENT appointment mid June and Fred showed the surgeon the lumps. I thought that we were supposed to be phoned with the results. I knew that further treatment was likely and that this would be in Christchurch. I asked if it could be Wellington where Fred had family but was told Christchurch was preferable.
Within two weeks he had a CT scan and a fine needle aspiration biopsy a week later. We got copies of correspondence to Christchurch. These were full of abbreviated medical terms. I picked up enough to know that it was cancer.
Along the way I had a phone call to ask if the surgeon had been in touch with us. The person who identified herself as the surgeon’s nurse said that he had the results but she was not able to tell me them. I phoned the GP’s office to get the results and was told that we needed to go in to get them. I was offered an urgent appointment but declined it because I was expecting a phone call with the results and did not want to pay for an unnecessary GP’s appointment.
I did phone a few days after the initial phone call. I spoke to someone else who said the surgeon would not have received the results yet. The next contact was a phone call from Christchurch with an appointment in Christchurch for July 27. They spoke to Fred. They asked if he was bringing a support person and he said that they seemed to assume he would fly down.
I phoned NMDHB to enquire about travel and was told that Blenheim patients were expected to drive. At that stage (pre Kaikoura earthquake) that was a little over 300km each way. As all we had at that stage was verbal notice I asked if she had a copy of the letter to us, so I was able to have that emailed. We were eligible for assistance with travel which meant submitting a claim to the Department of Health and being reimbursed a few weeks later.
I tried to research likely treatment. It seemed that radiation was likely and might be over several weeks. I worried how we would manage this. I knew Fred could get accommodation, but if I went too our dogs would need to stay in a kennel. If Fred went alone he would need money for meals etc. We lived week to week on National Super. How could we get by?
At this stage, no one had talked to us about the biopsy and scan results. Back then I didn’t know what I know now about SCC.
The appointment was for 10am. We knew to allow several hours. We drove down the day before and stayed with my sister and her family the night before. The day of the appointment I had a minor melt-down in the shower. “I don’t want the cancer to take my Freddy.” I told myself I was being silly. Yes the cancer had recurred, but we had found it early and it was tiny. They would fix Fred.
We had had a number of crises with Fred’s health. He had been a heavy smoker. He stopped smoking when he fell off a roof and broke his back leading to a few weeks in hospital. He had surgery for that and was discharged from hospital early because of a junior doctor’s strike. He had pneumonia when he was discharged but didn’t have a prescription for antibiotics. He wound up along the way with cardiomyopathy and COPD. He had always been a heavy drinker, and at one stage was in liver failure. I didn’t expect him to recover from that, but he did, and he drank less, but still more than most other people. So now when Fred seemed in better health than he had been for years - there was no way he wouldn’t recover.
We arrived at the hospital on July 27 with time to spare. In the foyer was a stall selling cupcakes with dark red and bright yellow icing. It was something to do with Head and Neck Cancer. That had to be a good sign. ( I know now it was World Head & Neck Cancer day and those were probably an attempt at the colours for Head & Neck Cancer - burgundy and ivory.) We found our way through the hospital and reported in. We met a young doctor who told us she would present Fred’s case. We met a coordinator who showed us the room where the meeting would take place. There were lots of seats and morning tea was laid out including cupcakes like the ones I’d seen for sale. I was impressed. All these people to see us, and morning tea. We were shown a book Fred would be given with his treatment plan. Then we were asked to wait in the corridor and told to help ourselves to tea or coffee.
Other people arrived and were waiting in the corridor too. Professional types arrived and entered the meeting room. It was only gradually that I realised that the others around us were there for the same meeting. People went in and came out, Several had their treatment discussed with them in the corridor. We could not avoid hearing that one man was having his eye removed, another all his teeth, and someone a bone from his leg. Those treatments seemed awful. How lucky we were that Fred’s case was so minor. No wonder they were leaving us till after these serious cases.
Sometime around 12:30 people started to leave the meeting. They must be people who didn’t need to be involved with a minor case like Fred’s.
A couple of doctors came and took us into another room. They had trouble finding Fred’s notes. When they did, almost the first thing they said was “palliative care only”. I didn’t take in much of that meeting. Fred told me one was a radiation oncologist and the other a chemotherapy oncologist. We were told that chemotherapy was only about 20% effective. Fred would be referred to the GP for painkillers and district nurses. It seemed surreal. Fred was not in pain and his health seemed better than it had for years. They asked if we were driving back to Blenheim that day which we were.
We stopped off to do a little shopping then hit the road home. Fred just wanted to get home but I was driving and needed a stop. I still don’t know how I managed the drive home. I was driving into the setting sun and it was dark before we made it back to Blenheim. What did we have for dinner that night? I don’t remember. It might have been cheese on toast. I think we bought wine at the supermarket. Two days later we had a phone call from the coordinator in Christchurch. I was not polite.
We saw the GP the following week. Like us she was in shock. She phoned oncology and I had a call from an oncology nurse that day. I was expecting an urgent oncology appointment but when I phoned later I was told that they didn’t know anything about Fred. The following week we had an appointment with the ENT surgeon, he referred us to oncology and we got an urgent appointment the following week. The oncologist explained Fred’s CT scan. She made a referral to the oncology social worker.
The social work referral was of little use. The social worker could not understand why palliative care was being suggested for someone as well as Fred. I asked about an advanced care directive and he said that GPs hold “do not resuscitate instructions”. I asked about counselling. He suggested an agency for me to phone for myself.
We knew that Fred would need a will but could not afford to spend several hundred dollars to see a lawyer so I wrote one and we took it to community law. They said it would need changes and I made those a few weeks later. Getting organised to sign with witnesses seemed hard.
I had arranged a second opinion from an Auckland practice. They suggested radiation and chemotherapy. One of the treatments (Cetuximab) they suggested turned out not to be funded although Pharmac had flagged it as high priority for funding.
We saw the oncologist twice more. When I suggested chemotherapy to slow progress she said he was too well for treatment. I still don’t know why she said that. His breathing was more difficult and thick phlegm made eating hard. Fred was losing weight and hope. Fred had a low dose of liquid morphine, prescribed by a doctor in the GP practice, to help breathing.
He was deteriorating and drinking. He became weaker and confused. I took him to ED on the Monday and they prescribed Mucinex for the phlegm - a prescription I didn’t fill because Fred was seeing oncology the following day and it was another unfunded treatment. It was suggested to me that a nebuliser might help with breathing which was what bothered Fred most. The oncologist referred Fred to hospice for help with breathing and arranged an urgent scan and an appointment for two weeks ahead.
The hospice nurse visited us on the Thursday to enrol Fred. We discussed the unsigned will and were to address that the following week with social workers. She took some readings while she was there. Fred’s pulse was racing.
It was arranged that I take Fred to ED. He was confused and wanted to go home. He pulled the line out of his arm. They told me I could take him home. I said I could not handle him so they kept him. He was agitated and needed to be sedated. When I went in on Friday he was barely conscious. The nurse told me that his electrolytes were out of balance and they could not get them right. They took him for a scan and I had to sign the authority because he could not. I still did not realise that this was the end.
He was unconscious when I saw him on Saturday. In the early hours of Sunday while I was asleep, the hospital left a message that he was in the early stages of death. I spend most of Sunday there leaving early evening to have a meal and feed the dogs. While I was doing this Fred slipped away. Exactly four months after that awful meeting in Christchurch.
In many ways I'm grateful that Fred missed out on some of the awful head and neck cancer treatments. Fred loved food for example. He would watch a TV program and have to try things (mostly he was the cook) or we would go to an op shop and buy a couple of recipe books. If we came up with one good idea it was worth it for the pleasure we both got from a new flavour combo. When he was choking on phlegm he was distressed by the breathing - which felt like drowning - but also by difficulties in eating.
After Fred’s death, I sent an email to oncology saying that Fred would not attend further appointments. I followed this with a phone call the following day. They did not know Fred had died. A week later I had an email from the nurse we had as a contact point (she had been away).
Our GP sent a sympathy card. She has been terrific through all of this. I wish for the sake of others that the rest of the medical system had been like her.