Pip's Journey

In 2011, Pip was a happy and healthy 46yr old mother of 4 children, aged 15, 13, 10 and 8 - then came the brain cancer diagnosis. Pip reflects on her journey so far, both the struggles she has faced and her hopes for the future.

Pip running a marathon on the Great Wall of China - a commitment she made to a friend while in hospital after brain surgery.

I was experiencing a lot of headaches and earaches at the time, which had gone on for far too long. I had been to my local GP a couple of times, thinking I had a bad ear infection, but nothing showed up. He then sent me to an ENT specialist, who said I was just stressed and should sort myself out, giving me Valium to take. I wasn’t going to do that with four young kids. I put up with my symptoms until I became a lot worse.

Finally, I sought a second opinion. This doctor ordered scans and an MRI, where they found a shadow on the brain and I was referred onto a neurosurgeon.  He then sent me for further scans and after consultation with his colleagues, it was unanimous that I had a brain tumour.

We were given the diagnosis on a Thursday and I was in hospital having surgery by Tuesday.  

Being given a diagnosis of a brain tumour is a numbing experience and everything moved so quickly once I was diagnosed. I didn’t know much about brain tumours at the time and had no idea what I was going to be looking at in the future. I simply wept as my doctor went into the details of what would happen next. I was in a complete state of shock. My poor husband had to be the brave one and take on all the details as I could not retain anything the doctor was telling me. It was such a blur, but I just knew he was going to open my brain and remove the tumour.

It was not until I was being prepped for the surgery that the fear started to sink in and the ‘what ifs’ became real. I knew I had to be strong and just make sure I got through for my husband and the kids.

I was lucky though, if you are going to have a brain tumour, I at least had one in the ‘best possible’ place! My pathology also came back with only early cell changes. It was a low-grade glioma, and I was told it was ‘as good as benign’. There was no further treatment recommended and I just needed to be closely monitored.

Although my prognosis was positive, unfortunately shortly after my surgery an abscess formed in my brain which led to a haemorrhage. I became critically ill and less than a week after being home from my tumour removal, I had to undergo a second brain surgery. This left me in hospital for quite some time with a PICC line in my arm giving me treatment, which made me quite sick.

After all the surgeries, I was left with a left sided weakness and ongoing seizures. There are periods where I am unable to drive and there are many side effects to the medications that I must now take.

Excess weight was one side effect that I struggled with, but I have worked really hard to correct this. I have managed to gradually regain all my strength, plus more! 

I also lost a lot of memory and deal with multiple frustrations daily, particularly with short term memory recall. My brain tends to shut down very quickly when it is overloaded. On top of this, is the constant threat that if I don’t manage myself well, I may have a seizure.

Currently, I am down to just one MRI and neurosurgeon check-up annually - these still cause me a lot of anxiety though because there is always a fear that the tumour will grow back. There are also quarterly (sometimes more) visits with my neurologist to manage the seizure medications. As there is no pattern with the seizures, I have had to get pretty good at reading the signs to monitor myself closely.

I am forever learning more about the impacts of taking the drugs long term and trying new ways to improve my health to make sure they don’t affect any of my other organs. It is always something. It’s costly and mentally draining but I’ve learnt to try and have a balance in my life.

At the time when I was going through everything, I was so absent, I wasn’t really aware of the full impact it had on everyone in my family. I now know it was huge!

My tumour was in the frontal lobe and it affected my emotions. I literally had none when I came out of hospital - I was not the same person. This was so hard on everyone, and really affected the kids. It’s only now that the kids are much older that they have been reliving things with me and I know how much it affected them. It breaks my heart to know I was so absent during that period of time in their young lives.

We were very lucky though to have a tremendous amount of support from our family and friends.

The work of the Brain Cancer Collective is so vital in our fight against brain cancer. Accelerating and enabling research is crucial to getting us closer to a cure sooner.

I had a scare 2 years ago and decided to have a second opinion, we discussed my original case and the advancement of treatment because of research. If I had been diagnosed today, they would have followed a different treatment plan which has been found to have better outcomes long term. You only have to look at all the other cancers, the survival rates have increased dramatically over the decades with the amount of research that has been done. It is just so bloody important and it’s about time brain cancer research got the same attention!

I’m happy to report my future holds a lot! I am looking forward to living out a long happy and healthy life with my family, I have goals I set now and I slowly tick them off one by one. I’m enjoying everything life has to offer with those that mean the most to me.

 

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