Shelley’s Brain Cancer Journey

Sending our warmest wishes to Shelley, our much-loved Peace of Mind Foundation volunteer and supporter. She is recovering from recent surgery and is now home with her family.

Diagnosed with an Astrocytoma brain tumour in 2019 and following surgery and treatment, Shelley had gradually returned to her ‘new normal’ life. Unfortunately, her MRI in February 2023 revealed her tumour had returned and surgery was once again needed.

Here’s Shelley’s story of her brain cancer journey so far and how she is managing post-surgery, thank you Shelley for sharing this with our brain cancer community.

This recovery has been vastly different from my last. Last time my cognitive thinking, planning and organising, sensory processing and spatial awareness was 'out of whack.’ The carpet in the hospital tripped me out!

 I did not go to rehabilitation; from the hospital I went home. There was no 'physical' disability by the time I left the hospital. I had experienced Supplementary Motor Syndrome (SMA) on my right, but after 11 days in hospital it had mostly resolved. My kids were younger then and to be honest I didn’t understand the role rehabilitation could play (if only I did!).

It took weeks and months for things to settle, and I feel my speech and confidence was greatly impacted. I had speech hesitation, would not be able to find words - my husband said "they put an 'um' in your brain!”

Initially I only informed close family and friends of the procedure and diagnosis, but I don't feel they understood the enormity of the situation and I felt lonely.

That's when I researched and found Peace of Mind Foundation (who support brain cancer patients ‘Here and Now’). I contacted Bec, the Peace of Mind CEO, and had an initial discussion.  She informed me that a family retreat was coming up and I was eligible to go along with my family - a weekend away in country Victoria with other brain cancer patients. At first, I wasn't sure I wanted to attend the retreat, as I had worked so hard to disassociate myself from my diagnosis as a coping mechanism. How would being among people with brain cancer make me feel?

We attended the Family Retreat in Feb 2019 (the weekend Covid 19 hit Melbourne, just prior to the lockdowns). Whilst there, they were filming a promotional video and Bec asked me if I would like to state my name and age and identify as a brain cancer patient - the video was being created to show brain cancer does not discriminate....this was confronting for me and I said 'Hi, my name is Shelley, I am 37 years old, and I have HAD a brain cancer diagnosis".

The use of language and terminology is interesting....I thought of my tumour as being fully resected so it was no longer a part of me that I associated with...therefore I didn't have cancer or a cancer diagnosis,  I had HAD a cancer diagnosis.

The retreat was so amazing...it gave me space to be among nature, to try new things and test my skills in a safe and supported way (Peace of Mind have nurses and volunteers who attend the retreats to support the patients too). Being with my family and having opportunities to connect with other families who had or are experiencing the same or similar trauma provided a comfort like no other, a safe space for vulnerability, but it provided the foundations of support. If you don't wish to engage, there is no pressure.

My children, then aged 8 and 10 years met other children who were impacted by brain cancer and it’s as though their worlds expanded. We made several connections that weekend that have continued.

In 2022 we again attended the family retreat. This time it was reassuring for me to see how far I had come in my recovery, completing the activities, walking around the facility (which took brain power before suddenly did not so much), having conversations, how I managed being in a group setting, etc. It was truly uplifting but also fabulous to reconnect with the families we had previously met and to see and share our progress and meet new people.

This time I know differently and so I'm doing different. 

Following my recent surgery in March 2023, I again experienced SMA, however my speech returned better than before my first surgery! This has been somewhat miraculous and thus I’m using my voice as a ‘superpower’ of sorts.

This time, my right sided movement in my arm and leg was impacted. My right arm and hand function took a few days to return and I’m still working on gaining the strength and full motion, as well as my leg and foot – I’m currently walking with a 4- wheel walker, my balance and coordination still impacted. I had five days in hospital followed by three weeks inpatient rehabilitation and intend on continuing with an outpatient therapy program.

Throughout my inpatient rehabilitation stay I discovered I enjoy art therapy and painting, and I have been attracted to exploring colour through my recovery. I bought back to life a flower delivery I had received through an acrylic painting. The pink sweet scabious flower really caught my attention and I very much wanted to capture it in the painting. This will be on display at an art exhibition in May at the St John of God rehabilitation centre in Frankston.

I have created a group page to invite those people I want to in and those people that want to follow my recovery and wellness journey can. To have support, care, know someone is there to pick up the phone who will listen (even if they don't get it), is really empowering. I feel I'm educating them and strengthening friendships/relationships in the process.

I believe, because I have used my voice this time and been open about my experiences, my support network has expanded, and this has only had a positive impact on my recovery. I would encourage anyone going through similar circumstances to consider who is your support network? It could be a family member, neighbour, colleague, friend, coach, team player, community group etc.

We all have something to offer another, whether it be time for a visit, or to support to take to an appointment, or a listening ear, a text to say ‘you are thought of’ or a funny meme to lift your spirits, phone call, prepare/buy/deliver snacks and/or a meal, assistance with household chores. In my case I have been lucky enough to have friends visit and provide tender loving care to me in the form of brushing my tangled hair and braiding it, painting my nails, giving me a facial, bringing me home baked snacks, sleep remedies, decorating me with henna art, etc.

I have also found we can all learn from one another within the support network. For example I’ve learned what a smile journal is when I received one from a 14 year old as a gift and it really touched me. This has been a very useful tool and gift for me. I may be able to one day pass on the gift of a smile journal to someone else too!

I’m back on the launching pad ready to find my ‘new normal’ again.