A little bit about Brian
Brian was a kind, thoughtful and engaging person, someone who was a true friend, a hands-on Grandpa, and was always ready to go out of his way to help or try interesting things for fun.
He played Hockey and Cricket in his younger years, and absolutely loved all things Sport. His main Teams, being The Hurricanes, The All Blacks, The Black Caps, and Manchester United.
Brian was a very intelligent bugger and I often referred to Brian as Mr Right; (his Middle Name being ‘Always’.)
Somewhere in the back of his memory, he had stored all sorts of facts, and would only say, it was (such and such) if he knew it to be correct.
He was working for Southern Cross Cable Network when I met him, and retired from there in September 2023.The Company website profile on Brian read,
“Brian is the resident Southern Cross techo-guru …. And to be frank, most of the rest of us don’t understand what he does… but he does it, it works, and the network runs better for it! Brian works his magic from the Wellington office, though he is hardly ever there, spending most of his time at one of our many cable stations. Brian has been with Southern Cross for many years, and enjoys getting his hands dirty with the latest network technology.”
How the Journey Began. On Hearing the Diagnosis and Treatment
Brian was a true optimist , and was always positive. I’ll always remember that conversation with Mr Michael Flint, around the need to amputate his leg. His first comment was about how relieved he was that we had no steps to our house (having only recently moved from a home on a steep section, and with around 50 odd steep to reach the front door.)
Around August 2022, Brian exhibited symptoms of left knee pain. This pain was consistent with Arthritis and as such was treated that way. He had a course of Physiotherapy to hopefully elevate the pain. This was not successful and he was sent for an X-ray in December 2022, to determine whether there was a possible fracture. No signs of fracture, nor arthritis showed on the X-ray. His knee was painful, and medication was not helping with the pain and the symptoms.
Brian returned to see the doctor in March 2023 and he was refereed to see an Orthopaedic Specialist. He opted to go privately, as this area of expertise in New Zealand has long wait lists in the Public Health System. 18 April 2023 Brian met with the local Orthopaedic Specialist. Whilst she could see no evidence of arthritis or fracture on the December X-ray, she could see the swelling around his knee area and recommended further investigation, through an MRI. Brian had the MRI on 27 April 2023. He was immediately called by the specialist to return to see her in clinic on the following Tuesday, 2 May.
The MRI showed Brian had a Tumour in his knee and he was seen the following day (Wednesday) at Hutt Hospital and underwent CT Scan, Blood Tests, and. biopsy of the tumour. Brian was referred to Mr Michael Flint, Musculoskeletal Oncologist in Auckland Hospital for surgery to remove the Tumour. This type of Tumour is classed as a secondary tumour, as it would normally occur AFTER a Cancer in another area of the body. Brian was sent for a PET Scan of his entire body. This showed no sign of a primary tumour elsewhere.
The initial plan was for Brian to have a course of chemotherapy to reduce the turmour prior to surgery, and a date was set for this to happen. However, just prior to the chemotherapy Mr Flint said that the tumour was very aggressive, and grown fast, he determined that he could not risk waiting on an outcome for chemotherapy and that the best course of action was for Brian to have an above Knee Amputation.
On 23 June 2023, Brian had the surgery to his left leg Above Knee Amputation (AKA). The surgery was successful and a following CT Scan showed evidence that all of the cancer was removed.
The follow up treatment would involve 3 monthly visits to see the Specialist and a Chest X-ray to ensure there was no metastasis of the tumour. The X-rays in September and December 2023 were both clear of cancer. His next X-ray in April 2024 showed a 32mm mass in his Left Lung and a few small nodes in his Right Lung. Mr Flint arranged for a CTScan, which Brian had on 13 May 2024. Mr Flint rang on 16 May 2024 to advise that Brian now presents with multiple lung metastases and that it was Terminal. Brian was referred to Dr Anne O’Donnell, Medical Oncologist at Wellington Hospital for Palliative Care.
On 8 July 2024 Brian started a round of Radiotherapy on his main lung tumour, because the tumour was pressing on the chest wall, and causing a lot of pain and Brian had also had a situation where he had coughed up blood. The radiotherapy would help with reducing the tumour enough to take away the pressure it was causing and help stop the bleeding. The course of radiotherapy was of a zap each day for a Five Day period. The radiotherapy did help with pain management and bleeding issue.
Prior to starting chemotherapy on 30 July Brian had the following set of tests done. The information would be used to form a Baseline for the start of his Chemo.
- CTScan
- Cardiology
- Renal
- Audiology
The Chemotherapy treatment cycle would be repeated every 21 Days. Brian had Six Cycles, and would remain in hospital for Days 1-3 of each cycle.
In January 2025 Brian underwent an addition CTScan to see if the results from the chemotherapy had presented positive results. The results showed a significant reduction in main tumour. Brian remained in good health until mid April 2025, when he noticed pain in his left shoulder, it was minor to start. A scan in late May, determined that the cancer was now in his bones. A course of radiation treatment followed and helped with pain relief. He was feeling ok coping well until mid July 2025. He deteriorated very fast in the 24 hours before he passed away.
Challenges and Support
When Brian came home from hospital, the biggest challenge was learning how to navigate the world in a wheelchair and How to manage his personal hygiene. For me, it was reminiscent of the day I brought my first child home from hospital. No manual, just figuring out what worked best for us, and a lot of trial and error. There were some frustrating times, but there were a lot of laughs. We embraced our ‘new norm’.
We found the hardest thing for us was ‘asking for help’ even from our children. We didn’t want to be a burden, and everyone leads such busy lives.
Many of Brian’s favourite activities, were no more, but, having ‘only’ lost his left leg and having an automatic vehicle, his love of driving, was the one thing that he didn’t lose. So we went on a wee road trips. Often to our favourite spot in Taupo.
Whilst the past two and a bit years, have been rather challenging for us, in his usual Brian way, he met the challenges with his Can Do Positive Attitude. I would ask him almost daily, “are you Happy?” he always answered, “I’m always happy”
The Medical Support
Hearing you have cancer is scary. Your brain locks into that word, and nothing else is retained. Being told, it’s an aggressive rare cancer (in Brian’s case, he was 1/1,000000) and terminal is on another level.
Those very special medical professionals were with us all the way. They were available 24/7. We were never alone. Their dedication and resilience is what gets you through this.
What would Brian say to others dealing with sarcoma
His advice would be, to those starting their sarcoma journey or within their sarcoma journey is to Try (if you can) to turn the negative around and think positive. This is Your New Norm. Find a way, to accept it, and make it work for you. That is what he did, and it was that, that got him and me through.
For me, as the carer, I looked to his can do attitude, and found my strength from that. Was I sad or, at times, angry? Definitely. I’d hop in my car, drive around the corner and cry my heart out. Then I’d go home and watch whatever random shit he wanted to watch.