What did you change to support any medical treatments - dietary changes, activity changes, supplements?

In September 2021 when I was 20 weeks pregnant, I noticed that my right foot had become numb and I could no longer move it and was struggling to walk. Alongside that I was experiencing nausea and was sensitive to bright lights. Doctors thought it was my baby laying on a nerve so they sent for an MRI of my back. This came back clear so the doctors sent me for another MRI on my brain to make sure everything was okay.

I was now 24 weeks pregnant, I was only in the machine for 5 minutes before they pulled me out because they could see something in my brain. They sent me back into the MRI and I lay there for an hour, I could see into the radiology room as doctors appeared all looking at my scan. I was taken into a room with my Mum and was told the devastating news that I had a brain tumour. They told me that it might have been there for years and now had started growing. My treatment options where limited as I was pregnant and they couldn’t tell me what grade it was as I couldn’t have contrast dye with my MRI scan because of being pregnant but they knew it was a Glioma and I was told I’d have 1 year to live. 

My husband Danny and I decided to ‘watch and wait’ however I became really poorly at 27 weeks pregnant, I could no longer walk unaided and I was now losing feeling in my right arm. At 30 weeks pregnant I had an C section under general anaesthetic. Sienna Grace Laura Mahon was born on November 30 2021 weighing just 3.4lbs.

I was due for brain surgery at the Walton centre in Liverpool on 10th December 2021, I’d had another MRI scan that day with contrast dye and this had shown that the tumour had grown a large amount and it was now inoperable due to location and growth. Instead they could only do a biopsy and remove around 10/15% of it. I got told two days before Christmas it was a grade 4 brain tumour and was highly aggressive and even with treatment we were looking at around one year to live. 

In January 2022 I started dual Radiotherapy/Chemotherapy everyday for 6 weeks at the Clatterbridge Cancer Centre in Liverpool. After 10 days I was taken off chemotherapy as my liver was failing. I finished the rest of radiotherapy in February 2022 and my scan after this had shown the radiotherapy had worked. I continued on with TMZ chemotherapy and the tumour responded really well for six months.

In January 2023 after a routine scan I was told the tumour had spread to the other half of my brain so they switched chemotherapy treatment to Lomustine. After 2 cycles I had a seizure and an emergency scan revealed that this chemotherapy drug wasn’t working and I was moved onto the chemotherapy drug procarbazine. The NHS only funds 4 types of chemotherapy, I’m down to my 3rd line of chemo and running out of options. 

Shortly after starting the third chemo I became very poorly and had to stay in hospital for 10 days with the original tumour symptoms and sickness. New scans showed swelling on my brain, I had also contracted covid which was likely why I’d become so poorly. 

At this point I’ve completed 12 months of chemotherapy, I do this for 10 days every month and I will be on this for the foreseeable furture and will continue to be scanned every 3 months. 

I take vitamins and supplements daily to help keep my immune system at 100%. I did try the keto diet during Radiotherapy but found it hard as it was difficult to maintain my weight. Chemotherapy makes me feel quite sickly and has an effect on my appetite. Doctors advised me on a balanced diet and as I was losing too much weight, I was placed on calorific shakes as a result. I now eat a low carb diet and avoid sugar where I can. 

I try and get out most days, even if it’s just taking the baby and dog for a walk around the park. I think being outside and fresh air is great for mental health. 

What did others close to you do for you that made a difference?

I have a very good support system in my family. Mine and Danny’s parents would often take Sienna and our dog Luna for the day to give us time to rest and recover. As my story was in the media, people from all over would message words of support and love which kept me going. I’ve said from the start that I won’t be a statistic, I’m gonna fight this with everything I have and with family and friends at my side.

What was your biggest self-discovery or revelation after diagnosis?

I’ve found that I’m stronger than in thought I was. I’ve battled cancer for nearly two years and putting up a bloody good fight! 

What was the most difficult part of your journey and how did you overcome it?

Losing my independence I really struggled with. I was a very active independent girl before I was diagnosed but after my surgery and during radiotherapy I lost the ability to use my right leg and had to re learn to walk. 

I pushed on with pyshico and small exercises daily to build strength back up and my walking is now back to 90% ( though I do struggle when I get tired)

How did you deal with the anxiety that surrounded the diagnosis?

I cried. And cried some more. 

But I got back up and carried on. 

Me and Danny surrounded ourselves with positive people and positive stories we’d found online. 

Did you join a support group? If so, how did it help? And would you be happy to recommend/share the link?

I joined a lot of groups on Facebook when I was first diagnosed but I left them as they I found them too sad.I now just use the Brain Tumour charity support group and the Strength in numbers Facebook group for support.

I started my own instagram page (@lauradowntherabbithole) and I use that platform to talk to other people who have cancer and who are in my situation.

I’ve connected with so many people in my position, it’s nice to know there are people out there who understand what I am going through.

"I wish I knew about alternative treatments at the beginning and tried them sooner. I have oxygen therapy and red light therapy to help boost my chemotherapy"

Is there something you have learnt through your research about personalised cancer treatment above standard of care that you think might help other people?

I wish I knew about alternative treatments at the beginning and tried them sooner. I have oxygen therapy and red light therapy to help boost my chemotherapy.

What did you do to help you meet the challenges of your treatments?

I've learnt to listen to my body. If I need to sleep or rest I will, I was quite stubborn when I was first diagnosed and tried to carry on as normal but I’ve learnt it’s okay if you need a break. I also throw myself into new hobbies and activities to help keep my mind off treatments. I like to keep my hospital life separate from my home life. 

What three things would you tell a person who just yesterday learned of their diagnosis 

1. I found it helpful joining support groups and talking to people who are going through the same thing as me.

2. Keep positive and keep going. No one can tell you how long you have left.

3. It’s also okay to have sad days as long as you get back up afterwards and carry on.