All Things Considered Melbourne

I returned to Australia in December 2007 and moved back to Melbourne.  On 9 March, 2009, I headed up to Sydney to help celebrate my friend’s 30th birthday.  The next day she and I were eating leftover dips and I was thinking, “Goodness, these dips taste really strange.”  At that time I wasn’t aware that having a metallic taste in your mouth indicated an oncoming seizure.  Before I knew, I was convulsing on the floor with a tonic clonic seizure.  I became quite blue in the face as I had stopped breathing.  My friend during this ordeal gave me a mouth-to-mouth resuscitation and I was immediately taken to the hospital, where I was bluntly told by the surgeon, “You have low-grade brain tumour.”  I was in shock.  I was also numb.  My parents made me fly back to Melbourne literally the day after.


2. What was your reaction to the news?
At first I was in complete denial of the news.  Whilst a part of me had absorbed the news, the other part of me didn’t.  I was eventually diagnosed with a Grade II Oligoastrocytoma, which is a low-grade mixed glioma brain tumour consisting of oligodendroglioma and astrocytoma.  

In my case the low-grade glioma did not spread outside the brain, but instead grew into a normal brain tissue and created symptoms as the tumour grew locally.  This disrupted connections between the normal brain cells and created pressure on the nearby brain, resulting in epileptic seizures.  My brain tumour had expanded and because the skull couldn’t expand along with it, the brain and tumour were confined within the skull, resulting in pressure.  As a result, even a relatively small, slow-growing tumour caused severe brain problems, particularly because the tumour was in a critical area of the brain. 

Immediately upon hearing the bad news, I decided not to have a biopsy of the brain tumour nor have an operation.  I am naturally a strong-willed and a stubborn person, so instead I decided to look at changing my diet in order to try and lessen the effect of the brain tumour or at least improve my health.  For the first three weeks I did a detox which consisted of drinking raw juice in order to cleanse out the toxins from my body.  Afterwards I went on the anti-cancer diet which is free of dairy and preservatives and predominantly raw foods-based.  I thought at the very least the detox and the diet would get my body healthy for the up-coming surgery, which it did.

After being on this diet for about ten months I noticed a significant improvement in my overall health, but unfortunately it didn’t lessen the effect of my brain tumour.  So I decided that I was as ready as I would ever be and went through the operation on January 28, 2010.  From what my mum told me, I was put in the operating room at 6am which was scheduled to be completed by 11:30am, but because I started having seizures on the operating table during the operation, the surgery wasn’t completed until 3pm that afternoon.

3. What was life like for you after the operation?
Life was very tough after the operation.  Due to the tumour having been removed from my frontal lobe on the left hand side of my brain (its size was approx 3cm x 3cm), I had lost the ability to use my right arm for several months.  I also lost the ability to speak and to read/write.  Life thereafter became a daily struggle mentally and physically.  I was also becoming overwhelmed with ‘information overload’ as it was taking me longer to conceptualise information and knowing how to put my thoughts and words together.  Even a single task like being able to read became a daily challenge.  I remember playing Cleudo with friends and having to count the numbers on the two dies very carefully and slowly in order to know how many places to move forward. A simple task like turning on the oven became too complicated and confusing.  I look at the same oven now in my kitchen and when I use it I can see just how far I have come.

Luckily my friends and my family have been extremely supportive throughout the whole time.  After approximately three months of intensive rehabilitation I began to use my right hand and along with speech therapy I slowly learnt to speak/read again, although the process took a long time. Even though I have recovered physically I wasn’t prepared for the mental side of my recovery and how long it’s taking.

4. You began searching for support groups that catered for those with low-grade brain tumour.  Tell us about this.

To help overcome my feeling of helplessness and anxiety, I began to look for support groups – for those who also had an operation from low-grade brain tumour.  Unfortunately I realized that there really wasn’t a support group for this specific category.  There were plenty of support groups catering for people who had high-grade brain tumour, but not for low-grade.  Whilst they are both brain tumours, the needs for high-grade brain tumour patients are very different from that of low-grade brain tumour patients.  According to the Cancer Research UK website, a high-grade brain tumour is relatively fast-growing, is likely to come back even after the removal of the tumour, it may spread to other parts of the brain or the spinal chord, and the patient will need radiotherapy and chemotherapy (in addition to the surgery) to lessen the likelihood of the tumour’s return (http://www.cancerhelp.org.uk/type/brain-tumour/about/types-of-primary-brain-tumours)

Also according to the Cancer Research UK website, a low-grade brain tumour is generally defined as relatively slow-growing and is less likely to come back after the partial removal of the tumour. In my case you couldn't take the whole tumour out as you need as much brain as possible to remain intact and also allow for scar tissue to grow around the removal site which takes up even more brain tissue. There is also a chance that in future I may need more surgery and/or radiotherapy.  I will have to have six-monthly Magnetic Radiation Imagery (MRI) scans for the rest of my life and take anti-seizure medication to help control my seizures for the next three to four years but this is a small price to pay in the scheme of things.

Back to my quest for a support group, I initially contacted the Brain Tumour Alliance Australia (BTAA) and they were extremely helpful and supportive. I found a comprehensive list of all the support groups here in Australia and in Victoria under their ‘Helpful Links’ on their website.  I contacted all the groups on the list and was kindly advised that their support groups catered mainly for those with high-grade brain tumour. 

One of the support groups from the list (and the one closest to where I lived) was called Brain Link and once again they were extremely kind and helpful. I was told that they did have a support group for those with brain tumour, but was advised they were mainly for people over 50 years old and I would be the only one my age who had low-grade brain tumour.  They made it clear that I would be most welcome, whether I had a low or high-grade tumour. I really appreciated the invitation, although I knew I would feel awkward being the only one with low-grade brain tumour. I began thinking…there really should be a support group for those in Australia around my age (which is over 30) with low-grade brain tumour.  Before I knew I had decided to establish this group! 

5. Tell us how you started to establish your organization
I spoke to many people about my idea, and decided to create an online support group that reached out to as many people as possible with low-grade brain tumour in Australia over the age of 30.  The Brain Tumour Alliance Australia (BTAA) was very supportive of my idea and the Secretary of BTAA offered to ask their Committee if they could list my group on their website under their ‘Helpful Links.’  I also contacted Brain Link and set up a meeting with them.  I was absolutely astounded by their generosity and kindness, and they helped me a great deal.  To materialize my idea of establishing a support group, I decided to create a website  (with a lot of help from my two dear friends Luke and Lindsay Gardiner) that would enable people with low grade brain tumour (and/or their loved ones) to get in contact with each other and offer support and help whilst sharing their stories.  The online support group would also enable people to post poetry, writing and/or artwork as a form of therapy.

My IT and tech-savvy friend Luke Gardiner helped me design the website, and I decided to call it Brain Tumour Ahoy Hoy.  One of the reasons why I decided on this title was to inject a little bit of a humour in this otherwise confronting and serious issue.  I decided on ‘Ahoy Hoy’ to adopt Mr Burns’ quote from The Simpsons – as a way to say, “Ahoy hello – is anyone out there?” (to basically say that you are not alone in your battle against a brain tumour).  Because I have a Fine Arts background I also decided to create a logo to represent my support group.  Luke’s sister Lindsay Gardiner, a very talented Graphics Designer, helped me to fine-tune the look of my logo (see below) and make it look professional.  As you can see Lindsay did a fantastic job.

If you look at the logo it represents an anchor and a love heart.  The anchor represents a safe harbour where you can ‘drop your anchor’ and be yourself.  The love heart represents the loving and supportive environment that I wanted to create for my website. To me the wings represent protection, hope and a little magic.

To find out more about my Brain Tumour Ahoy Hoy support group, please visit: www.braintumourahoyhoy.org

6. What do you hope will come out of your support group?

First and foremost, I would like for my support group to reach out to as many people as possible.  My website Brain Tumour Ahoy Hoy is where those in similar circumstances can go online, tell each other what they’re going through and offer support to each other – to basically say that they are not alone in their fight against brain tumour.  It is also a site where those with loved ones having been diagnosed with low-grade brain tumour can go online and share their thoughts and discuss their issues.

In regard to my support group, I’ve had a really positive feedback from those within the medical professions.  I’ve started emailing several flyers about my support group to my Neurosurgeon at the Royal Melbourne Hospital as she was overwhelmingly supportive of my idea.  She advised me that they would start handing out the flyers to all their low-grade brain tumour patients.  This is exactly what I was hoping to achieve – to be able to reach out to as many people as possible through word-of-mouth and through my existing contact base.

Eventually I would like to establish a monthly support group where those who have been diagnosed with low-grade brain tumour or their friends and family can meet up face-to-face once a month and discuss their issues, concerns, and share their story.  I am very excited about this!  Watch this space.

7. What has been the response for your support group?
The level of feedback and encouragement that I have received from a lot of people has been tremendous!  In addition to my Brain Tumour Ahoy Hoy website, I have also created my own Facebook group (also titled Brain Tumour Ahoy Hoy and open to the public), where members can offer support to each other and share their individual stories.

It is amazing how many people you can reach out by having your own support group.  I’ve had friends who were touched with my story and even though they don’t have a brain tumour they have disclosed their own medical issues with me, and they’ve identified with me and my story.  I also have many members who have been diagnosed with the same brain tumour I have, so the level of support that we have been able to offer each other has been quite a touching and a humbling experience.  The positive feedback that I have been receiving about my support group gives me much encouragement.

You’ll be pleased to know that I have recently expanded my support group to include everyone around the world.  As mentioned earlier, I initially targeted those with low-grade brain tumour from the age of 30 years old and up here in Australia (as a way to kickstart the support group), but due to the overwhelming number of responses I have been receiving from members worldwide, I’ve decided to expand my support group to cater for everyone around the world with low-grade brain tumour, their friends and family and also make it inclusive to all age groups.

8. Having gone through such harrowing circumstances, what lessons have you learnt about yourself in the process?

Firstly, I have learnt that I am a very strong woman, but that it’s still ok for me to be vulnerable and to let people help me.  This has been a very difficult aspect for me to come to terms with – to be strong and vulnerable at the same time.

I have also learnt that it’s ok not to be perfect – my friends and family will still love me no matter what.  Even if I can’t talk properly at times, get lost frequently, have mental blanks and incorrectly add numbers, I am more than these things – a lot more.

Because I am such a private person it was hard for me at first to tell my story but I did it because in doing so it may encourage others to share their story.  After I was diagnosed with a brain tumour, it made me want to stop the world from spinning and to try and work out what my reason for being on this earth was.   I was given the special gift of a massive life threatening wake-up call, and I survived.

I asked myself, ‘What will I do with my second chance?’

I want to get it right this time…and starting this group is hopefully a step in the right direction.

9. What advice do you give to those with low-grade brain tumour?

One piece of advice I give is to realise that you may need a lot of support and information.  I would firstly find out the name of the brain tumour from your doctor, ‘google’ it online and do your research. This will help you to understand a little bit more about the actual tumour itself.

For me, I found that keeping a journal and marking all the significant dates/events, like the day I found out I got brain tumour, was of a huge healing process.  The journal definitely helped me to ‘look back’ and remember all the key dates/events.

Also – it’s ok to feel sad/lost and to worry about the future.  It’s ok to cry and it’s natural to be afraid. But it’s also just as important to be positive and to have a really good laugh.  It’s important to do things that bring you joy while you go through your journey.

Lastly – don’t be afraid to ask the ‘tough questions’ about your condition.  But also be prepared emotionally for the tough answers. And always remember you have a right to know – it’s your brain after all!

10. January 28 this year marked one year after your operation.  How did you celebrate this momentous occasion?

I marked this day by drinking champagne and eating strawberries at St Kilda Beach with some of my very good friends who have been very supportive of me from the very beginning. And there were many people who supported me and couldn’t make it on the day, and my thoughts were with them by giving them silent thanks on this special day.

One of my friends whom I met while working at London Bridge Hospital flew over from London on the 15th of January this year.  Also the same friend whom I celebrated her 30th in Sydney (and who gave me the mouth-to-mouth resuscitation!) was here last month.  In many respects, having had all these important friends  celebrate this momentous day marked the ‘full circle’ of having survived a brain tumour one year on.  This precious gift reinforced the importance of having a postive attitude and making the most out of my life.

One Year On: Sam Looks Back At Her Hair Growth Since Her Operation A Year Ago

To find out more about Sam’s support group ‘Brain Tumour Ahoy Hoy’ please visit www.braintumourahoyhoy.org for more details.

References

Drug Information Online, Drugs.Com Inc (2011), viewed February 11 2011, http://www.drugs.com/cg/low-grade-gliomas.html 

MedicinePlus (2011), viewed February 11 2011, http://www.nlm.nih.gov/medlineplus/ency/article/000695.htm

Cancer Research UK, cited 11 February 2011, http://www.cancerhelp.org.uk/type/brain-tumour/about/types-of-primary-brain-tumours
Brain Tumour Alliance Australia (2011), viewed January 29 2011, http://www.btaa.org.au/

BrainLink (2011), viewed 30 January 2011, http://www.brainlink.org.au/

Wright, S (2010), Brain Tumour Ahoy Hoy, viewed 4 January 2011, http://www.braintumourahoyhoy.org