Depression and Brain Tumours
This is like the dirty secret of brain tumour diagnosis and treatment. We weren't warned to be vigilant to the signs of depression which can be triggered by the diagnosis itself or by the intensive treatments themselves - no wonder my poor brain snapped.
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Three months after commencing my chemo (2 chemo protocols plus steroids) plus radiation, my diagnosis and treatment triggered a severe psychotic episode and a deep depression. Below is my personal account. It is a dark place to revisit but I share it in the hope a patient, family member or carer reads it and can be vigilant to the signs before they become serious, or that a fellow patient reads it and accepts it's not their fault, and it's not a failing. Below is my personal experience:
Many in the medical profession question the link between brain tumours and depression. I am living proof it's real.
This is very difficult for me to talk about – it's an uncomfortable subject. Today I decided this is an appropriate event to share my story, so let's get uncomfortable for a few minutes so we can spread the word and highlight the need for funding resources specifically to help brain tumour patients.
On the day before my husband's 33rd birthday in May 2007 I was diagnosed with a grade 4 malignant brain tumour. I was told I could be dead within three months. At the time our sons were aged 4 and 18 months. This was an earth shattering shock "Three months is not long enough, not long enough, I have two young sons I need to raise."
Looking back there were signs but they were obscure and certainly not enough to warn me I was in imminent danger of losing my life.
In the 6 months leading up to my diagnosis, I was experiencing physical symptoms - loss of balance and headaches that were getting steadily worse But the worst symptoms were emotional, I developed terrible anxiety, recurring thoughts and confusion. I couldn't sleep and was unable to focus or make decisions.
I was doing strange things like not being able to work out how to get my clothes from the floor and into a suitcase. I would find myself standing somewhere with no clue as to what I was supposed to be doing there. It was incredibly distressing and I had to take stress leave from work.
I remember telling my GP I thought I was going mad.
These were all indicators of depression so my family and boss thought it might be delayed post-natal depression from the birth of my 2nd son.
I didn't believe that was it, but had no other explanation for what was happening to me. The symptoms certainly didn't scream out danger, danger and it was a shock when I was finally diagnosed with a cancerous brain tumour. I realised the strange symptoms I was experiencing were because of a super aggressive tumour which, by the time they found it, was 7cm long.
Once it was discovered, I had an immediate brain surgery in Canberra and a second surgery three weeks later with Dr Charlie Teo, who said the tumour was so aggressive it had completely regrown in the 3 weeks. I probably would've died within weeks.
Apart from the surgery, the commencement of my treatment included 6 weeks of maximum dose radiation, plus a regime of powerful steroids and two chemotherapy protocols at the same time due to the aggressive nature of my tumour.
I now know that each of these treatments can trigger depression, particularly the steroids, which can trigger psychosis. Rare, but it happened to me.
The fact that I am standing here today shows the treatments did their job for which I am thankful every day, but the combination of these treatments also triggered a terrible depressive episode which resulted in a near fatal 'suicide'. I never use that word as it implies intent.
I spent six weeks in a mental health unit seeing psychologists twice a week until they considered me 'safe' to go home. Their care kept me alive, but this period left deep scars. The idea that I could have died at my own hand, leaving my sons to think it had all gotten too hard and I had quit on them is abhorrent to me. I, the normal Sarah Mamalai, would NEVER do such a thing. It was clear to those around me I wasn't myself when it happened but it took me a long time for me to overcome the guilt and shame.
Patients and just as importantly, carers, need to be warned up front of the early signs of depression so they can be vigilant. Even when I sunk deeper into depression and it was clear I was dangerously low, my mother and husband found it impossible to get urgent psychiatric care – 6 weeks for an appointment is an age when you can't even imagine another day.
This needs to change. In my case we weren't warned and when it got serious there were no resources to help us.
Thankfully I survived but I'm sure others haven't. It took me months to recover and feel like myself again and years for myself, my family, and my husband to feel healed. This has only been possible with help from a specialised psychiatrist (in my case an amazing oncology psychiatrist called Dr Anna Burger), medication and, on my part regular meditation, healthy living, laughter and a determination to claw my way out of depression so i could enjoy life again.
I have converted my fear, anger, shame and guilt into fight and positive thinking.
I've managed to turn my cancer journey around and have gone on to do things I never thought possible – like trekking Kokoda and raising $50,000 for Charlie Teo's Cure Brain Cancer Foundation.
These days, I relish and appreciate my new, less scary rollercoaster – the normal ups and downs of daily life for a mother lucky enough to have two wonderful lively sons and the loving support of my husband, parents, and family. Without them, I wouldn't have made it.
My husband Oscar has travelled every step of this journey with me, the ups and the downs. Neither of us likes to focus on this dark chapter in our life, but he is here to support me today and i thank him, and my parents, - for everything.
Carers of people with brain tumours need some kind of early warning system because the symptoms of depression can be masked by all the other intense treatment going on which are already depleting the physical and emotional reserves of the patient. But unfortunately such a machine does not exist. Depression related to brain tumours is like a dirty secret that no one talks about.
That was nearly four years ago and miraculously I am beating the odds and I love my life. I can honestly say i am happy and well, however tragically this is not the case for many of my fellow patients.
I want to tell patients that even on the darkest of dark days there is always a tiniest of tiny glimmer of hope – grasp it. Then seek help, you can only go up from there – look at me.