For those who might follow me on Strava and know me as a prolific runner may be wondering what’s up, well here’s your answer. It been a hectic few weeks.
My boobs are still trying to kill me. Even though the cancer had been completely removed from my breasts in February 2016 some sneaky cells got away. Just a few, an insignificant, isolated few that took a good 6 years to find a home somewhere else in my body. They didn’t know what they were doing though, by settling on my spine they certainly weren’t going to go undetected for too long. I developed what I thought was a bit of a piriformis issue (a pain in the butt) and had a sore back. As an endurance athlete I know how to treat these issues. It took a few weeks for me to realise when the pain wasn’t going away despite the tried and tested methods that something was up. It twigged perhaps my cancer had spread, I looked up bone cancer, secondary cancer and my fear was realised.
A visit to the GP, who said as I knew, your risk of the cancer returning is low it’s possibly a spine issue. An MRI and X-ray on a Friday evening and by Tuesday morning it was confirmed. My GP’s first call of the day was to me. You know it’s important when the GP calls you. She had called me before, my iron was low, come in for an infusion, this interaction was a little more hectic. What followed was a week of appointments and tests, all made for me. I was called or messaged, provided instructions and just turned up. Within a week of that call I had been formally diagnosed with Secondary Breast Cancer, a lesion had grown on my L5 Lumbar Vertebrae and S1 joint. The nerves and spinal cord were being pushed around by the invasive tumour 36mm in diameter. The cancer was much like my original tumour having strong hormone receptors. A good sign as it is very treatable and manageable with hormone treatment.
When I was considering my treatment options back in 2016 there was a very low risk of cancer turning up in my future and at that time we said we would tackle that if it happened.. Things seem hard now but I know they will get easier. I have been reassured that I will be able to run again. I have plenty of living to do yet. I will routinely be monitored and tested and will now live with Cancer. For most diagnosed with Breast Cancer the cancerous cells are removed and if caught early enough the prognosis is great, you can expect to live a long-life cancer free. It is not known why some people develop secondary cancer where the cancer spreads elsewhere in the body.
I have lived and will continue to live a full life. I live with no regrets, seizing the opportunities afforded me. I hope that by sharing my experience you draw inspiration to do the same. To live your life well, to be kind, to not be afraid to challenge yourself and I have been challenged. If you are curious to know what it is like to live with cancer and the challenges it presents please follow along, don’t be afraid to ask me questions and share your own experiences whether it be personal or that of a close family member.
This is what I do know. There continues to be significant research into Cancer. Treatment options are always improving and the time people live with cancer also increasing. In the 6 ½ years since my diagnosis there has been significant advances. I will certainly be around for quite some time yet decades even.
As my Cancer has strong hormone receptors I have been medically induced into menopause which has me suffering hot flushes. These I can deal with. They wake me adding to the insomnia but it is way better than the nerve pain I have ensured and still suffer a little with, medication mostly assists with this pain.
For the foreseeable future my current cancer has been treated. I will routinely undergo screening and the hormone treatment is likely to stop or significantly slow down the spread of my cancer.
Due to the medication I am on at the moment I feel a little foggy in the head but I am functioning as an effective member of the community and continue to enjoy my work in the Queensland Revenue Office and coaching my athletes some of which have some big events coming up.
A glimpse into what happens in the first few weeks of a diagnosis.
23rd August – GP called with my diagnosis, I was referred to my Breast Cancer Surgeon.
24th August – Appointment with Dr Nano who refers me to a Medical Oncologist and provides me with some effective pain killers and scheduled a PET Scan.
25th August – Had a PET Scan which will determine if the cancer has spread anywhere else in the body. I had to go on a low carb diet for this procedure, that was tough.
26th August – appointment with Medical Oncologist who will manage my treatment moving forward. Dr Keith Horwood took me through the PET Scan and it was good to see that the cancer was only in my spine L5, S1 joint and that it had taken 6 years to spread there.
29th August – Bone Biopsy of tumour to determine if it was Secondary Breast Cancer and if it was hormone receptive like my original cancer. Procedure was done as a day patient at the Greenslopes Private Hospital.
2nd September – Follow up appointment with Medical Oncologist who confirmed Secondary Breast Cancer, very strong hormone receptors and provided me with prescriptions for hormone therapy and referred me to Radiation Oncologist Dr Matthew Foote (also a runner – Comrades Marathon, Boston Marathon).
6th September – 1st hormone treatment injections with my GP something I will have every month for now. The hormone treatment slows or even stops the growth of cancer.
13th September – 1st appointment with Radiation Oncologist and planning for Radiation Treatment, had three more tattoos added to my collection for this treatment.
20th September – 1st of five intense radiation treatment sessions, experienced some nausea as the lower spine is in the area prone to triggering nausea.
22nd September – Memorial Day holiday but I spent it in quite a bit of pain after a morning of vomiting and in quite a bad way. Two trips to hospital on this day, one for anti-nausea medication and more pain relief and then later for scheduled treatment.
Weekend of 24/25th September – in quite a bit of discomfort, some nausea, not much sleep and quite a bit of pain.
26th September – Called Icon Cancer Care nurse and spoke to a Doctor who provided me with a script for Dexamethasone which proved to really help with the pain.
27th September – Last Intense Radiation treatment and appointment with Radiation Oncologist. I was pleased to get that last treatment done and things seemed to be getting better until they didn’t. I learnt that 1 in 10 experience a pain flare like I did and it happened to coincide with a day when I couldn’t keep anything down including my pain relief, the Dexamethasone really helped but it’s typically only prescribed short term and it seems the three days and then tapering off wasn’t enough.
1st October – after a night of no sleep and trying all my pain relief options I headed to the Greenslopes Hospital Emergency Department for help. I was provided with a prescription for Temazepam and sent home. That worked for a half a night so I got some sleep but was not the answer to my problems.
2nd October – early to bed again after taking Temazepam in the hope of getting some sleep, pain proved to be the winner a sleepless night followed. I was now experiencing a sharp pain in my lower leg, and some pain in my lower back and hip. This appeared to be nerve pain and opioids to treat this pain proved ineffective.
3rd October – I got up at first light and went for a walk as moving seemed to help or at most was a distraction. It didn’t help or offer much relief. Back to Greenslopes Hospital Emergency and by then I was I a pretty bad state. This was the day I became a human pin cushion to control the pain. It started with a dose of Fentanyl, admissionto hospital and transfer to ward 22, and my usual pain relief for the day. Days are usually okay for me it is the nights that things hurt. A sharp at times pain that radiates in my lower leg now. Sometimes in the hip and lower back. As it was a public holiday and the Doctors had already been through the ward I didn’t see anyone until Tuesday. The Monday night of the long weekend I spent sleeping in short bursts before the pain kicked in again, at which time I would press the call button and a nurse would come in with something, it alternated between two Endone tablets, and a Morphine injection throughout the night.
4th October – visited by representatives of Oncologist team in hospital. Yes I have a team… The opioids (Endone and Morphine) were definitely not doing the trick as my pain is a result of the inflammatory response of the intense radiation treatment. Couple this with some nausea due to all the opioids I was taking and I was pretty wiped out this day. Some anti-nausea medication meant I was able to eat and keep down the pain killers during the day and things significantly improved.
5th October – 2nd day in hospital and things did improve. I went for a walk exploring some trails in the bush I could see out my ward window. The pain was under control but I was nervous about the night and the pain returning. Fortunately the Dexamethasone did the trick and I had a good nights sleep.
6th October – Discharged from Greenslopes Hospital. After a relatively good nights sleep I felt much better in the morning and was cleared to head home with a stack of medication. I estimate I have taken more pills in the last month that I have in my first 50 years!
As of the 11th October the pain is something I am managing. This is due we think to the nerves untangling themselves after or as the tumour blasted by the Radiation is shrinking. Also an inflammatory response. I suffer some insomnia often getting up around 3am and then heading out for a walk around 5am as it’s starting to get light.
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