My partner Fred (69) and I live near Blenheim, New Zealand. Blenheim [...]

My partner Fred (69) and I live near Blenheim, New Zealand. Blenheim has a small hospital (Wairau) and is served by the Nelson Marlborough District Health Board (NMDHB). NMDHB has a larger hospital in Nelson which is a little over 100km from Blenheim. Fred also has COPD.

Fred had a lesion removed from the left posterior of his tongue on Dec, 1 2015. The details show well differentiated SCC (p16 negative). A CT scan showed no metastatic disease;

They decided that the margin was not enough and it was re-excised on Jan 29, 2016 That showed no SCC, scar tissue only.

Fast forward to a followup on 17 June, 2016 with the ENT surgeon where Fred showed the ENT surgeon some new lumps on the left hand side of his neck towards the back. There are about 3 small lumps, no symptoms from these.

A CT scan on 28 Jun 2016 and a fine needle aspiration about a week later show multiple left cervical, bilateral supraclavicular and mediastinal nodes; ? multiple pulmonary metastais. The FNA showed malignant squamous epitelial cells consistent with metastatic SCC;

Although we had a copy of the letter with this information no-one explained it to us. We had expected a phone call from the ENT surgeon. Fred was referred to the team at the Canterbury District Health Board (CDHB) in Christchurch, about 300km from Blenheim. The appointment time was 10am and we were told to allow 2-3 hours

Fred was seen briefly by a doctor who felt the lumps and examined his throat with a scope through his nose. We met the cancer co-ordinator who showed us the meeting room and a booklet she had with explanations of treatment. She would complete a treatment plan in that booklet. She then asked us to wait in the corridor. Tea and coffee facilities were available, but we didn't use them.

We waited while medical staff assembled and gradually became aware that other people in the area were also there to attend the meeting. Morning tea was taken into the meeting. Patients were taken in, and came out. Several people after they had been into the meeting had their treatment discussed with them in the corridor where anyone could hear. We could not avoid hearing that one man was having his eye removed, another all his teeth, and someone a bone from his leg. Finally around 1pm medical staff started leaving the meeting.

Two doctors who we had not met before asked us to go into another office. Fred tells me they were a radiologist and a chemotherapist. There was some confusion in finding Fred's notes. Then the radiologist said that they would be offering palliative care only. He said there were other lumps including some in the chest which meant that radiation and surgery were not suitable. Fred would be referred back to the GP who would supply pain relief and district nurses. The chemotherapist said that chemotherapy was available but only about 18% effective, and that it had side effects (no other explanation of that). They then asked if we were driving back to Blenheim that day. We were because we had left the dogs home alone. That meeting was only about 5 minutes.

We saw our GP the following Tuesday and asked her about a second opinion. She suggested that the local oncology department would have a fresh POV. She would arrange an appointment. I had a phone call that afternoon from an oncology nurse at Wairau. There were no appointments available there but an oncologist was visiting from Nelson and would take Fred''s files back and they could decide who would see Fred and arrange an urgent appointment in Nelson.

On Monday I phoned Nelson oncology to find out when Fred would get an appointment. They had not heard about Fred. There was a meetng that morning. She took my phone number and at lunchtime I had a call from an oncology nurse at Wairau. She denied any knowledge of a referral but suggested I call in after an appointment we had with the ENT surgeon on Wednesday.

When we saw the ENT surgeon he was to make a referral to oncology, and one to social work. He suggested that the radiation oncologist from Christchurch who visits might be involved in the treatment. I asked if that was the person who had previously only offered painkillers, and said we had found him uncaring. I called into oncology (Fred refused to) and spoke to two nurses. Thare was no-one else there. I don't know if any other nurses work there, but doctors visit from Nelson. One of those nurses was the one who had phoned me first, and the other the one who had phoned and said they knew nothing about Fred.

Anyway I got two phone calls on Friday, one from Nelson and one from Wairau to tell me Fred has an appointment at Nelson oncology on Monday. It's a 45 minute appointment so should give us some time with the doctor.

I am feeling so discouraged with this. If it was not a true matter of life and death I'd be walking away. I have no idea if they will offer any treatment, or how this disease might progress if we just let it run it's course.