Our Story
My name is Kirsty, and I am the wife of Craig (49yrs) who was diagnosed with Giant cell Glioblastoma in September 2023. We live in regional Victoria with our three beautiful young adult teens. As much as wished I never had to write this, this is our story.
In early 2021, Craig experienced left-sided facial pain/numbness after a vaccine. After visiting our GP, Craig was ordered to have a brain MRI and was referred to a Neurologist in Melbourne as a precautionary measure. After a Neurology review and receiving clear results for the brain scan life continued normally.
However, in April 2023, the numbness returned following another vaccine, whereby doctors ordered another brain MRI and another referral back to the Neurologist. The results of the brain MRI revealed two small lesions in his right temporal lobe.
Further investigations were completed, MRI spine, lumbar puncture etc and a discussion on the possibility of lesions being Multiple Sclerosis was had with the Neurologist. All these tests proved clear and a decision to have a further brain MRI in August 2023 to review the lesions was the plan moving forward.
Our life continued normally to that point. Craig was well, working full time as a Golf Club Manager and we were running a family business (Pub) in the high country monthly which was located three hours from our home. I had resigned from my previous role and career 12 months earlier so I could focus on more time for myself, time with our family and to organise more for our business and I was also enjoying doing more exercise and catching up with friends.
Our children were busy with their careers, study and friends and all living at home. They were aged 19, 18 & 16 at the time and were informed about what was occurring with Craig’s health as tests occurred. We are a close family.
Craig had a further brain MRI mid-August and we were informed by our GP that the results showed the lesions had grown. A review appointment was made with the Neurologist for further discussion. They were no longer being called lesions but tumours. Craig was referred to a Neurosurgeon and after a consultation was scheduled for surgery 4 days later. I should add at no point had Craig suffered any headaches or obvious seizures. He was commenced on an anti-seizure medication in late July by the Neurologist as he had a very slight tremor in his fingers in his left hand.
Craig underwent surgery on September 7 2023, with one tumour fully removed, but partial resection of the second due to its proximity to his right eye. Craig recovered well from surgery and spent 4 nights in hospital. I stayed in a nearby hotel and our children remained at home with a family friend bringing them down to see Craig just after surgery. I had a great deal of support around me and friends came down to stay or sit with me. A friend even followed us home the day of discharge in the car to ensure we were ok.
Following surgery Craig was responsive and seemed himself, cracking jokes and even managing to watch his beloved Collingwood pies play on the TV two days post-surgery.
Craig was discharged home and we were to return 5 days later for the surgical review and pathology results. A close friend insisted she drive us to Melbourne for the appointment which we were so very grateful for.
We attended the outpatient clinic and were met by a team of four people. They asked us to move into the quiet room, somewhere more private. This made me extremely nervous and I remember catching my friend’s eye and we shared the same feeling. The team introduced themselves, two Neuro Oncologists a research Dr and a brain tumour nurse. I began to take notes so I wouldn’t miss anything and the brain tumour nurse very quietly told me not to worry as everything had been written down for us to read later. Phew, that was a load off as trying to remember all the information given to us would have been difficult.
The Neuro Oncologist started by explaining about the astrocytes and glial cells and what happens when there are changes. He did a scale of 1-4 with Craigs cancer being grade 3 with more pathology required as it was an unusual type. After further pathology results were received a few weeks later it was now called a Giant Cell Glioblastoma (grade 4). Craig’s tumour did not have some typical features of a Glioblastoma such as necrosis or vascular proliferation. Something I am still hopeful will work in his favour. Our treatment plan consisted of 4-6 weeks recovery from surgery followed by 6 weeks of radiation and oral temozolomide, a 4 week break and then 6 cycles of temozolomide with 2-3 monthly brain MRI’s.
It was so overwhelming. The day of receiving the news of a grade 3 cancer at the hospital I felt like running out of the room and being physically sick. I had some medical knowledge so understood we weren’t dealing with a low-grade cancer and that the possibility of losing him was very real. Our children, how to tell them what we were dealing with, it was completely overwhelming. The whole team was very kind, respectful and were patient to answer our questions. I cannot imagine having to deliver a cancer diagnosis to a patient and their family, in particular one as serious as brain cancer.
The next few weeks were quite a blur, talking to our children, family and our close friends. Living in a regional area means you are part of a community, one which has supported us enormously.
I was fortunate that I was not working as I was able to support Craig through his recovery from surgery, driving him to appointments and radiation therapy. Craig was amazing going through his treatment and only suffered mild fatigue during radiation and some fatigue towards the end of the chemotherapy cycles. I believe because Craig was younger, fit and well prior to surgery he was able to recover well and tolerate the treatment well.
However, Craig does suffer with Claustrophobia and having radiation with a mask bolted to the bed was very confronting. There was a great deal of anxiety for Craig going in each day even having sedation on board. As a wife if was very very difficult to see. We were fortunate to have radiation in our hometown so this made things a great deal easier for us. We were able to go home after the treatment or sit and have a coffee and we also had our network of people to support us. The treating Radiation Oncologist and her team were nothing short of incredible and made us both feel comfortable and supported us enormously. They were calm and relaxed and got to know how Craig needed support very early on in his treatment. They were also able to support me on days where I wasn’t travelling so well. I remember sitting in the waiting room when Craig went in for radiation and the TV was on in the background. A well-meaning person in the waiting room said to me how sad it was Johnny Ruffo had passed away, and then I remember seeing it on the TV. Johnny Ruffo had died of brain cancer. I remember responding politely however feeling so very sad at the same time.
Craig and I have always been very close. We have been together since we were 19 years old, lived in many towns, travelled overseas and raised 3 gorgeous children. We have created a beautiful life together and have made so many future plans. We love each other dearly. We celebrated our 23rd wedding anniversary last year. It was a wonderful celebration, and we enjoyed a weekend away at the venue we had our wedding reception at. It was also difficult and at times sad. At the beginning of Craig’s diagnosis a few people had mentioned “oh well he could be hit by a bus”. I really didn’t have a response at the time but did think to myself “Yes but you don’t know it’s coming”! It’s difficult to comprehend what celebrations may be your last together or with your family however at the same time it has been important to be hopeful and enjoy those special moments.
We have had an enormous amount of support during this time and I truly don’t know how we would get though without it. A friend set up a meal roster on a program called “Meal train” when we returned home following surgery. Family and friends would add their name and what they would prepare for us on a particular day. It would be emailed to us so we knew what night we had a meal coming! AMAZING! Another friend/neighbour would give the house a clean through while we were at radiation and be gone by the time we had returned home. Lots of close friends regularly checked in to offer emotional support and I always knew I could call someone just to vent or cry which I have done on many occasions. Craig was unable to drive for 6 months and friends and colleagues of Craigs would pick him up to take him out for a coffee or catch up with other colleagues. This also took pressure off me.
I contacted the Cancer Council very early on in Craig’s diagnosis. I self-referred for financial counselling and a couple of counselling sessions. I have my own Counsellor locally and have continued to see her. Our children have also been an incredible support to both of us and each other. At different times we have all struggled and been able to support each other where needed. The children have great friends and support networks also. We did attend a face-to-face family counselling session with my Counsellor initially which I felt was helpful. It allowed some of the pressure to be taken from me and for everyone to be honest about how they were feeling with some professional advice and support.
I have found linking in with Brain Tumours Online very helpful. The information, Webinars and being able to ask questions of the group are helpful. I really enjoyed the Webinar with Professor Kate Drummond and hearing stories of patients with high grade gliomas. We all need hope and my hope is Craig will be one of these amazing stories.
Craig and I have always been financially independent, and both worked to support ourselves and our family. We are like most average Australian families, working to pay off your house mortgage and raise your family, with enjoying some fun times and experiences along the way.
After a period of time, Craig had exhausted all leave. As I was not working and our pub was not opening regularly, we applied for Centrelink benefits. Having referred for Financial Counselling support through the Cancer Council was an incredible amount of support. My Financial Counsellor would talk me through my options and contact me on a regular basis to see how I was going and then provide advice. This ranged from weekly to fortnightly depending on my needs. Craig had some income protection which after completing huge amounts of paperwork and having supporting documents from the medical team we were able to apply for and receive. We also applied for total and permanent disability payment from Craig’s superannuation to assist us at the time.
I must say applying for Centrelink and access to aspects of Craig’s superannuation were not for the faint hearted. Medical letters to support these applications were very confronting and at times the volume of paperwork was incredible. Not all staff were helpful or sensitive to our situation. At times I felt I had to disconnect emotionally from our situation just to get everything completed. I did seek Social Worker support from both Centrelink and Oncology to try and alleviate some of the issues I was having. This was a great help. Craig and I had talked through in the event the worst would happen what would be important and how the kids and I would manage and what would also make Craig feel at ease. As difficult as this conversation is it is so important to have.
Family friends and work colleagues of Craig’s also set up fundraisers for our family to support with medical treatment and also to allow us to have a family holiday. All I can say is WOW!!!!!!!!!!!!!!!!!!
Both the financial and emotional support this showed both Craig and I and our family was truly incredible. We were all incredibly touched by the huge effort that went into all these fund raisers. This took a huge pressure of us and the love we all felt was truly amazing. We will be forever grateful.
So, as I write this Craig is 10 months post diagnosis. All 3-monthly scans to date have been stable with no new growth and even the small residual tumour which could not be completely resected looks good. Craig is doing well and has returned to work part-time and we are running our pub when we can. We have enjoyed a wonderful family holiday together and Craig and I have been able to return to Scotland recently where we were worked and lived in 1998.
I don’t know if I will truly ever accept what we are dealing with. It is hard, confronting and I would never wish this for Craig or our family. We try to embrace the normal things in life and plan for future. I cherish our time together as a family albeit through tears some days.
My husband is truly amazing. To go through so much emotionally and physically and remain so positive is something to be admired.
To anyone on this journey I send you all lots of love and strength.
Story written by Kirsty in July 2024, for Brain Tumours Online. Images supplied by the story author.