Tina is a mum of 2, foster carer and animal lover who enjoys travelling, film and all things nature. In April 2022 Tina was diagnosed with a non-malignant brain tumour. Tina talks to us about her brain tumour journey so far.
It was 4th April 3.15pm. I remember because I looked at the clock in my room whilst my surgeon was telling me the news. It was meant to be a 4pm appointment, so when the call came from ‘no caller ID’ at 3pm it took me by surprise. I wasn’t prepared as I had planned to be.
At 3:15pm the surgeon said “well you have a rather large tumour on your brain, its benign.” I asked if that was the good or bad one, he said “It’s non-cancerous.” He continued, “Its deep and tricky but we will operate, unless you don’t want surgery for some reason?”
At this point my mind went blank and I felt numb. It felt like I was in a nightmare. I then just tried not to cry and to concentrate and remember all that he was saying, I had no pen or paper to write anything down.
I felt overwhelmed, lost, petrified and alone all at once during the phone call. When he spoke of the side effects the first one is loss of life. I know they have to say it, but it frights the bejezzeus out of you! Then followed: stroke, double vision, loss of use of left facial muscles or side of my body, swelling of eyes, brain, leakage through the nose etc.
All-in-all I felt scared, petrified – I didn’t know the first thing about brain tumours except what I’d seen on TV!
I started to come to terms with my diagnosis when I was able to get information about my specific tumour. Google is not your friend! I tried not to compare myself to anyone else’s tumour, they are all so different.
I cried. But I also stayed positive.
My family and friends were an immense help, but I also took to social media to document and share my journey. Through this I found lots of people who had brain tumours and they reached out to me! This was such a relief, actually talking or writing to people who are alive and doing well after surgery.
This was how I found the brainstrust too! It was a week after my diagnosis when I found brainstrust, I joined the brainstrust Facebook groups. A lovely lady called Molly started to email me and made me feel much better about my situation. She is like my guardian angel, and I no longer felt alone. Although you have your friends and family around you, I found it easier to talk with strangers and the information Molly gave me was so relevant and made me feel more supported than I had before
This was how I found the brainstrust too! A lovely lady called Molly started to email me and made me feel much better about my situation. She is like my guardian angel, and I no longer felt alone.
When I joined the brainstrust Facebook I ordered a brain box. This has a plethora of information that you can tailor to your specific tumour and also a list of questions that you can ask your clinical team. I found all of this really helpful. I carry my ‘Brain Box’ folder to every appointment, its so handy to keep a record of everything.
It took me a few weeks, but I am now feeling even more positive about it. I think it’s important to remain positive no matter what the prognosis. I went to a very dark place for a couple of days, and I’d much rather never be there again! Its ok and even important to feel scared, anxious but don’t pack a bag and stay there! Let yourself feel, then move on and enjoy your day!
My advice for others going through a similar situation to me…
Be brave but allow yourself to be scared too. Feel all the emotions then become a Brain Tumour Warrior and fight!!
Get as much information as you can. Try to stay positive, its hard but you can do it.
It’s not just your tumour, it belongs to all your loved ones, family, and friends. They will all being going through this with you, you are not alone.
Please remember brainstrust is always here for you, whenever you need us. You can call us 24/7 on 01983 292 405 or email us on firstname.lastname@example.org. You can join the brainstrust community Facebook group by clicking here. If you’d like to order a brain box like Tina, please click here.