I Was Diagnosed With A Craniopharyngioma

Interview with Anna Gray:  In 2013 Anna was experiencing myoclonic jerks, a type of seizure. She was then diagnosed with a Craniopharyngioma. A rare type of brain tumour. 

Here is Anna’s Story:

How did you find out about your brain tumour diagnosis?

It all started in September 2012. I had returned to work after the six weeks Summer holidays but I was just so tired, even more, tired than I would normally have been. Towards the end of September, I began having myoclonic jerks.

At first, they were only at night. The jerks were becoming more frequent and severe. I was also having lots of low blood sugar episodes. I was exhausted all the time. So my GP wasn’t sure whether to refer me to a neurologist or a diabetic consultant.

In February 2013 I had an MRI scan.

A month later a letter arrived for an appointment in July, attached was another sheet with this message.

‘I am pleased to tell you that the MRI scan on your brain has been reported. This is essentially normal. There is a small cyst noted that is incidental but may well be congenital which means it has been there since birth.’

I knew that it hadn’t been there since birth because I’d had an MRI only four years earlier. I ended up going to see a Consultant privately who then referred me onto a brain surgeon.

I had a follow-up MRI in May which confirmed that the tumour had grown.

Following a change of brain surgeon, it was established that I would need brain surgery but then the tumour miraculously shrank and I didn’t have an operation until December 2014 when they confirmed that my tumour was a craniopharyngioma.

Unfortunately, the tumour did a lot of damage, the surgery did more and the radiation more again.

So I have been left with multiple hormone deficiencies; secondary addisons, an underactive thyroid, diabetes insipidus for which I have to take medication. I also have a  growth hormone deficiency but I can’t be medicated for that, unfortunately, because of the risk of it affecting my tumour.

I’ve also been diagnosed with additional illnesses; fibromyalgia, degenerative disc disease, bulging discs and inappropriate sinus tachycardia for which I take medication.

Then I had a car accident in December 2017 which triggered significant and painful issues with my neck.

Any advice for people or loved ones that get daunting diagnoses?

  • Stay calm
  • Listen to the doctors
  • Take every offer of help that is offered.
  • If there is a support worker, either MacMillan or through a doctor ask them any questions you may have and take their help.
  • Accept the help that friends and family will offer.

How are you doing now after such a terrible time for you?

I am constantly in pain! However, I have learnt to live my life according to my limitations. I still make sure that I go out and meet up with friends and live my life to the fullest and I also make sure that I have rest days in between. Some days are easier than others but on the whole, I am doing alright. I always try and remain positive for myself and my children.

What do you do now in your life?

To earn a little money and to keep myself occupied. I have written books which are available on Amazon:

I also sell educational resources on the TES website and I have a BLOG called Be Your Own Sunshine

All of these I can do in my own time and when I’m up to it. It gives me some purpose.

Where does your passion for writing come from?

I have always had a knack for writing witty poems etc for people’s birthdays. Then when I was studying for my degree I had to write more formal essays but I loved the writing. I just found that when I began writing it just seemed to flow and come easy to me.

How do you write so much? 

I have kept a diary since I was a teenager but it became hit and miss but when I became ill I began keeping a diary more diligently. So when I decided to write about my story I had the perfect material to work with. I began with my diaries and added more detail to them, adding in additional relevant stories as I went. When I’d finished writing my three memoirs I decided to write a fictional book because I had loved the process so much. And weirdly my old diaries came in useful this time too.

Some of the stories in ‘Cakes, Dates and Complications’, were my own but others had come from friends experiences too. I began with each character, I gave them a back story; the people in their lives and how they had gotten to where they were in life. Once I had the backstories I wrote a little of what I wanted to happen to them and then I began interweaving their stories. I planned out a brief outline of each chapter and what would happen to each character.  Then I just began writing.

I never struggled to write, I immersed myself into their lives and I felt like I was telling their stories. Some things changed as I wrote, so I had to go back to the plans and rejig them more than once. Again, I just loved the writing process and I was genuinely sad when I had finished writing them.

Do you have any new books coming up in the future?

I don’t have any books that I’m writing at the moment. I would love to write again because I loved the experience so much. Hopefully, at some point in the future, I will write again.

What motivates you?

Firstly, I think my children. I don’t want them to just see the ‘sick’ person. I want to be involved in their lives and see my grandchildren when they arrive! So I try to live my best life, I’m always trying different techniques and supplements to see if they can help me in any way.

One thing which I have always done, even ‘before, is to plan in things to look forward to; like a night out, a theatre trip or just meeting up with friends. Filling my life with experiences which helps me on my bad days.

Who is your personal hero or are your heroes?

Ohhh this is a question which I often asked children who I’d worked with but no one initially came to mind. I suppose my heroes are anyone who fights against the odds, who rises above and defies expectations. Like Paralympians, soldiers, teachers!!! They give me hope and the determination to succeed, they also remind me that there are always other people who are worse off than myself.

What would you say is the most interesting thing you’ve ever done?

Buying a motorhome and travelling across Europe. In 2016 I was away on holiday more than I was at home. Basically I was so convinced that my tumour would return that after my operation that I wanted to trick off as many bucket list places as I could.

What is the toughest challenge a survivor’s face?

I think it’s remaining positive despite the odds against you. It would be so easy to say ‘woe is me’ and accept defeat in the face of pain and limitations. You feel like you are forever fighting; the benefits system, your own body, to stay positive, everything can be struggling. There is always a little nagging thought that your tumour will grow and you will have to do it all again, but I try and ignore that as much as possible. In my opinion, remaining positive is the only way to navigate your way through.

What is next on your agenda?

My next big goal is to do a tour on America, I’m not sure if I will do it solo but I plan to do it next year. I also plan to move house, I want to downsize and have a flat which would suit me far better. Next year, there will be a lot of changes in my life because at present both of my children live with me and they have been an amazing support through everything, so I would be flying solo a lot!

Tell us something about yourself that people probably didn’t know… anything?

Despite now having a body of an OAP when I was a child I was an accomplished dancer and mini gymnast. I was extremely flexible which is ironic because now I’m as stiff as a board!!

I help to promote my son’s musical career.

What music is your son doing? 

Jack’s an acoustic guitarist and his music is quite eclectic; from Oasis to Ed Sheeran.

YouTube channel is HERE


Facebook Page: HERE


Anna Gray you are an inspiration. It has clearly been a difficult journey you have been on, yet you still help others by sharing your experiences. I am a big fan of your books. I wish you all the best with all you do and thank you for sharing your struggles. Very honest and helps others.  

Find Anna on Social Media:

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Anna Gray shares her Craniopharyngioma story

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