Recently I was asked to speak at an upcoming forum for health professionals regarding the general care for cancer patients in a regional area from a carer’s perspective. Those who know me understand how challenging and overwhelming public speaking is for me, especially from such a personal perspective and at a time I still feel broken and vulnerable at the loss of my husband to cancer.
Having said that, I wanted to help in some way due to the importance of the issue and the respect and high regard I have for the amazing person who asked. So as she has suggested, I have written something she can share on the day with those there to listen.
Firstly I want to say at no point did Brendan ever receive anything but the best cancer care available. I am grateful for the first class medical attention he was given from his diagnoses, throughout his cancer treatment and while receiving palliative care at home. And that goes the same for the cancer care both my parents receive. Mum has her treatment locally at Manning Base Hospital and Dads has taken place in Sydney, with reviews at Port Macquarie.
I am now a cancer widow and this is how I would sum up my experience from my perspective as my husband’s full-time carer throughout his treatment.
In 2014 Brendan was diagnosed with an undifferentiated pleomorphic sarcoma … he had no obvious symptoms in the lead up to his diagnosis, until he began experiencing progressively persistent pain in his leg in the months prior to that diagnosis. He put off going to the doctor and instead saw a physiotherapist for many months to no avail. After which he bit the bullet and made an appointment to see our GP. As a triathlete, pain and strain was something Bren dealt with, a lot, over the years, so the pain he was experiencing was more of a nuisance to him than a worry. He thought he may have had a stress fracture.
On consultation with Dr White, his local orthopaedic surgeon, some weeks later, Bren was told he definitely did not have a stress fracture and arrangements were made for him to see Drs Paul Stalley and Vivek Bhadri at the Chris O’Brien Lifehouse cancer clinic, in Sydney. He had an appointment with Paul Stalley just one week after his consultation with Dr White. It shocked us how quickly we got in to see the specialists in Sydney, as the wait to see a GP at home can be lengthy, and it was our first indication of just how serious what he had was.
After Bren’s initial consultation with Paul Stalley, and following his biopsy, we were told that the pain he was experiencing in his leg was radiating from a 7cm tumour in his right femur. He also had a smaller tumour in his left femur and a smaller one again in his right clavicle with metastasis present in his lungs. He was in trouble.
My husband was officially diagnosed with cancer in June of 2014 and died of cancer on the last day of August in 2017 — a little over 3 years later. He was 45. I lost a wonderful husband, and our twins, who were 10 when their dad was diagnosed and thirteen when he died, lost an amazing father.
On receiving Bren’s death certificate in the mail, I learned that he had been living with cancer for 8 years. It was devastating to think for the first five of those we had no idea that cancer had invaded his body.
For three years we travelled back and forwards between Sydney and Old Bar, regularly, for Bren’s treatment. This meant leaving our young children with family, for days and sometimes weeks at a time, adding a great amount of stress and distress to what we were already going through.
I would go as far as saying that for Brendan the distress of being away from his children at such a scary time for them, was equal to that of having to travel to Sydney every 3 weeks for chemotherapy and radiation, or losing a lobe of his lung and losing his right leg to cancer. His kids were his everything and he couldn’t stand not being with them when they needed him the most.
My husband rarely went to the doctor about aches and pains, as he always assumed by the time he got in to see one, he would be better. This a common problem and I think it needs to be addressed. If people can’t get in to see a doctor when they are feeling unwell, or don’t believe they will be able to… many may put off making an appointment until it is considered an emergency. And that might be too late. I think this assumption adds to the issues of early detection of any disease. In the case of cancer, I know personally just how precious time is, and that early detection is vital.
Just last week I tried to make an appointment to see my GP and there were no available appointments until April 26. Having the good fortune of being on the books of one of our towns best doctors comes with the distinct disadvantage of rarely being able to get an appointment with him. I haven’t been to my GP since my husband’s last appointment with him almost two years ago. Only needing to see a doctor on a few occasions in that time, I have seen other doctors — good doctors, but I don’t have a 30-year medical history with them. It’s a different level of care and obviously not my doctor’s fault that there isn’t enough of him to go around. Fortunately for me, I was able to get in and see my GP today, because he had a cancellation. Not everyone is that lucky.
When an appointment is unavailable with your GP, there are options. You can make an appointment for the next available timeslot — which could be anything from days to weeks away, and cancel it if you feel better before you get in to see him, you can ring around and see another doctor (which I have done previously as mentioned above) or you can just tough it out and hope to get better on your own — which I have also done and at the time it left me not knowing if my symptoms were emotional, mental, physical or all of the aforementioned.
I can’t help but wonder if GP’s, in general, in regional areas, weren’t so overwhelmed and overbooked because of the low doctor to patient ratio, would we see improved results in overall wellness throughout our community? Would we see earlier diagnosis and better survival rates for cancer patients in country areas? Would things have been different for Brendan? These are all questions worth asking. Frustratingly, I don’t have answers to any of them. I hope someone has though. Because we need answers. And although it breaks my heart knowing answers will not help my husband, I’m hoping they will help people like my Mum, who is currently being treated for stage four lung cancer and my Dad who is being treated for prostate cancer.
I look forward to a time when as patients, people won’t feel like they have to be dying to get in to see their GP promptly, and early detection will become commonplace.
My husband and my mother both had metastasis when diagnosed, my mother’s cancer is being treated but is not curable … I can’t help but wonder how different their cancer stories might be and might have been with early detection.