A daughter’s story

Tanya's Dad

As much as I don’t want my Dad to be remembered by what took his life, I do know that if those families who are directly affected by Brain Cancer do not share their stories, there is limited hope for raising awareness and a true understanding of the devastating effects of this disease. Therefore, I am making this courageous decision to share Dad’s personal story by re-living those memories which have been purposely buried deep, deep down, in order to do my part in raising awareness of this neurological disease.

Dad’s symptoms began in June 2014, at the young age of 57. Dad spoke about experiencing small momentary losses of awareness. As these became more frequent he visited his Doctor and an MRI was ordered. On that same day Dad was informed that his MRI revealed a small tumour in his temporal lobe, and he was referred to a specialist team attached to the Wesley Hospital in Brisbane. The specialist team requested to meet with him the following day.

There are moments during Dad’s diagnosis and treatment that remain fixed in my memory. One of these moments was when he called to say that the MRI had revealed a tumour. Dad was informed that the tumour appeared benign. Accordingly, Dad remained positively future oriented about its removal, a quick recovery and return to his usual lifestyle. After meeting with his neurosurgeon things seemed to progress quite rapidly with Dad being admitted to hospital where he would be monitored and his seizures controlled before his surgery in the coming days. Body scans cleared Dad of any further tumours.

One of my biggest struggles was needing to be by my Dad’s side every single day whilst he was in hospital, however this is very difficult when you have a family of your own, as well as completing a full-time Masters Degree. Therefore contact was limited to regular phonecalls, and emails.

I spoke with Dad shortly before his surgery, I could hear the anxiety in his voice, and Dad was never one to let his nerves get the best of him. The next 6 hours were filled with unease and angst. You can’t help but have you mind fixated on what is occurring in the theatre room. The phonecall telling me that he was out of surgery and in ICU provided instant relief. The neurosurgeon was happy with the procedure and the resected tumour was being sent away for analysis. Dad did everything he could to assist in ensuring a fast and healthy recovery. Dad was certainly not one to sit and wait for it to just all happen.

Five days post-surgery we were all informed of the results of his analysis, Dad’s tumour was a mix of both Grade 3 and 4. Certainly not the results that we were wanting to hear. I remember those immediate, intense feelings of anger which were accompanied by many difficult thoughts and questions. In particular, “WHY???”, “WHY MY DAD??”, “Dad certainly did not deserve to experience this suffering”.

Twelve days after surgery Dad returned home. Dad’s recovery from surgery was full of ups and downs. Dad commenced oral chemotherapy and a daily course of radiation therapy. Initially, the main side effect of his treatment regime was drowsiness, and therefore he was unable to engage in the many activities he enjoyed. Progressively, Dad started experiencing cognitive communication difficulties and it was assumed this was because of swelling on the brain after surgery. This was quite difficult for his family to watch because Dad was a very intelligent, sharp and articulate man. One of the greatest disappointments for Dad was his inability to drive. His license was removed for a period of 6 months due to his seizures. For a car enthusiast with many of his own hotrods and vintage cars parked in the shed, this was one of the biggest consequences of his diagnosis.

During the following months Dad had regular reviews with his oncologist and neurosurgeon. I can recall the intense anxiety which was felt each time whilst waiting for the results from each scheduled MRI scan. Fortunately, each scan was returning positive results, there was no growth and the remaining piece of tumour was breaking up and responding well to treatment. This result gave Dad and all of his family hope, it gave us much happiness. These results re-energised Dad and motivated him to continue with his treatment. Christmas 2014 was great, we were on the road to recovery and could finally put 2014 behind us.

Unfortunately, in January 2015 Dad began to experience some weakness in his legs and difficulties with walking. Subsequently another MRI was ordered. This MRI revealed a second brain tumour. Again, Dad was advised that the tumour was operable and it was recommended that he undergo another resection. We all encouraged Dad to have this second re-section and although he thought twice about this procedure, he made the decision to go ahead with it. Recovery from this surgery was certainly more challenging.

In February 2015 as Dad continued to recover from his second resection he began to experience intense pain in his spine, he was treated on numerous occasions at the local hospital. It was thought his back was seizing due to the extended periods of time he had spent in bed during the recovery from his second resection. As this pain did not dissipate he was admitted to the Wesley Hospital with more scans ordered. Unfortunately our worst fears were confirmed when a full body scan revealed that the tumours had spread to his spine. We were advised at this point that Dad’s disease had become terminal.

9 months after diagnosis Dad passed away from this terrible disease. The progression of this neurological disease was not due to non-compliance, as Dad did everything as advised by his medical team. It was not due to failing, as he gave it his absolute best. It was not due to insufficient funds or resources, as there was no hesitation in spending whatever was needed to beat this disease, and it was certainly not due to limited support as Dad had unlimited love and support from all of his family and friends. This leaves the question, what then was missing?? What more does a person need to do to survive this disease?? A person can give absolutely everything they have and this is not enough.

That feeling of helplessness I will never forget. Being unable to help was devastating. So much so, that my brother and I spent many, many hours researching the internet for clinical trials. We were looking for any valid research and reliable information about effective treatments. Unfortunately, the more we researched the more reality set in, this disease is currently incurable. I joined numerous support groups, however I began to withdraw from these groups as I read about other people’s distressing experiences. Experiences that no one should ever have to endure.

Further frustration set in when we continued to read that there is a disproportionally low level of funding allocated to brain cancer, and therefore there is limited knowledge about this disease. With this in mind I wanted to do something, anything I could to assist with contributing towards finding a cure. Accordingly I started fundraising and with the very generous support of family and friends we raised $2850. We started to engage with others affected by brain cancer and participated in the Walk for Brain Cancer 2014. Each year our family donates the money we would usually spend on Christmas presents to the Cure Brain Cancer Foundation.

Our family knows that we are certainly not alone in this experience. As I write this story a work colleague has lost her 48 year old mother-in-law to Brain Cancer. My Dad’s neighbour, his friend who helped him throughout this journey passed away from a brain tumour approximately 12 months after Dad’s passing. Two male friends my age (33) whom I went to school with were diagnosed with Brain Tumours and underwent surgery in 2015.

Like others, I only became aware of this disease and the lack of funding and support since my Dad’s diagnosis. What is needed for those persons diagnosed with this disease is currently out of their control. What is needed is more research, which requires more funding. A cure cannot be found without this funding and more people and their families will continue to experience this distressing rollercoaster ride. Those victims and their families in this situation often feel helpless and given that helplessness was one of my primary mental states throughout my dad’s journey, I wanted to conquer this and do all I could to help those conducting research to find a cure for this disease. I would like to know that by sharing my Dad’s personal story I am saving someone else from the anguish my Dad and our family have experienced. This is a journey of a thousand miles and every step is one step closer to increasing survival rates, and one day a cure.

Thank you to every person for their valuable time and effort into raising awareness and much needed funds to assist with ongoing research.