Late summer of 2021 I woke up in the middle of the night to find Malcolm sitting up in bed playing with our cat. He said he had acid reflux and couldn’t sleep. Was this the first sign of what the future had in store for us? Was the cancer already there?

Malcolm contacted his doctor for an appointment but due to Covid level restrictions he could only get a phone consultation. He was prescribed Omeprazole for the acid reflux.

As time went on, I noticed that Mal was continuing to have bouts of acid reflux as well as lower chest pains. Thinking it may be a reaction to a particular food group we modified our diet hoping that would help.

When an unusual rash appeared on his body, he was offered a video consultation with his GP however no positive diagnosis was given as to why he got the rash. I asked Mal why he couldn’t see his doctor in person, and he said it was the medical practice’s policy during the pandemic. Eventually the rash disappeared.

As many people did, we went out walking most days during the pandemic but as time passed Malcolm become slower in his pace and I found myself stopping and waiting for him. One walk in October he slowed right down and when I looked back, I saw he had stopped to sit on the side wall. He said he was struggling to breathe properly so I immediately took him to Auckland Hospital where he was put into a negative pressure room and had oxygen administered.

Over the next few days, he was diagnosed with Organising Pneumonia and prescribed prednisone and antibiotics. A CT scan of the lungs showed that there were unusual lymph nodes nearby and it was thought they were trying to fight the infection. He spent two weeks in hospital and slowly recovered but was still on medication when discharged, namely prednisone.

Christmas and New Year saw us in Matarangi with our children and grandchildren, but Malcolm’s health was deteriorating and I noticed that he tired quickly and needed to rest. Just after New Year 2022 he had very bad abdominal pain so we went back to Auckland hospital on 11 January.

A CT scan of the abdomen and pelvis showed upper abdominal lymph nodes. A gastroscopy was performed the next day and showed a large fungating mass in the lower third of the oesophagus. Biopsies performed confirmed adenocarcinoma. On 13 January a CT scan of the chest showed distal oesophageal wall thickening with upper abdominal lymph nodes. The diagnosis was metastatic adenocarcinoma of distal oesophagus to the lymph nodes. The numbness and disbelief at what we were being told was so hard to believe. To be told that there is no cure or hope for a longer life is devastatingly overwhelming.

We hoped that there was some way to have more time, but the reality soon set in when everyone we spoke to from nurses to doctors and Oncologists said, ‘I’m very sorry to hear your diagnosis.’

One Oncologist we spoke to said that had the cancer not spread to the lymph nodes there may have been a possibility of removing the tumour in the oesophagus but that wasn’t possible with the stage it was at. Malcolm was determined and asked the Oncologist if there was any treatment available to give him more time. They told us he may be able to have chemotherapy to try and get a few more months but there was no guarantee.

Malcolm was in a lot of pain so during his stay at hospital he was taken to Middlemore for a Plexus Block procedure to try and numb the nerves. However, once back at Auckland Hospital and the anaesthetic had worn off the pain returned and pain relief on a morphine pump, he could administer himself went a little out of control. The doctor’s tried to wean him off the IV morphine and back on to tablets to have at home.

With a referral to go to Mercy Hospice to help with pain management, we met with four doctors at Mercy in the initial consultation to discuss stripping back his pain relief schedule to get the balance right for him to be pain free. Over the course of the next two weeks that is what Hospice managed to give Malcolm. We will always be hugely grateful for the amazing medical help and care and support that Malcolm had while staying at Mercy Hospice.

Malcolm started his first course of palliative chemotherapy later in February. He tolerated the first round of chemotherapy okay without too many side effects, just very tired and unable to do too much physically. A loss of appetite and finding it difficult to eat some foods was always hard to watch. Mal loved his profession (Geospatial Surveying) and continued to complete projects he was working on.

In March Malcolm had his second round of chemotherapy which was increased to a 100% dose. He was not well after this round and on 12 April the doctors decided not to do further chemotherapy as planned, instead admitting him for a CT scan. The scan found that his liver bile ducts were closed, and some possible cancer cells were present there. The only day that they could do a procedure to open the ducts was the following Tuesday after Easter. Mal was discharged so he could go home and spend Easter with our family. Our plans to get back to Matarangi one more time did not happen as they advised us not to leave Auckland.

The surgery on Tuesday afternoon went ahead as planned and he was discharged the next day. About 3am the following morning I woke suddenly so I checked on Mal. He had a high fever, so I rang for an ambulance who took us straight to hospital. He was given medication to try and bring the fever down as they believe he had an infection from the procedure.

Still determined he managed to fight off the fever but sadly his immune system could not fight the bacterial infection, and our wonderful Malcolm passed away six days later in the evening on the 27 April from sepsis.

In his final days Malcolm was surrounded by family including his two daughters, one of which married her fiancé in a ceremony in Mal’s hospital room in a true show of love and respect and how much her Dad meant to her.  

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I often look back and wonder if there was anything else that could have been done to give Mal more time to live. He wanted more time. The number one thing that comes to mind straight away is early detection & diagnosis…

If only Mal had been able to get a physical examination or gastroscopy earlier perhaps the adenocarcinoma may not have spread to the lymph nodes? Perhaps it may have been operable and removed in conjunction with chemotherapy? The cancer had already spread when he contracted pneumonia in October but the diagnosis was only for the lungs and the lymph nodes were included in that diagnosis. Hopefully in the future with the Gut Cancer Foundation’s emphasis this month on Oesophageal Cancer Awareness and possible early signs more people will have a better chance of an early diagnosis and treatment in the future.

This may happen with several gut cancer cases (particularly oesophageal and pancreatic) that are not detected in time before they have spread. I understand that the protocols for covid in place at the time Mal was ill did not allow person to person consultations unless urgent (in that case it would be A&E) but people who are not well and believe something is wrong with their health should persevere with finding people who will help diagnose what’s wrong and perhaps then have a better outcome.