Jo Barlow mother of 4 was diagnosed with a Hemangioblastoma in 2016.
After being given the frightening diagnosis that she had a Hemangioblastoma. Thankfully, after successful brain surgery, Jo is brain tumour free and there is no sign of reoccurrence.
But, that was not the end of her troubles. Jo was left with many side effects.
She decided to write her experience through a blog to share her journey with the ups and lows.
Here is Jo's story
When were you diagnosed?
22nd April 2016
How did you find out about your diagnosis?
After giving up with various appointments with the GP and only finally being referred to a neurologist on the 3rd time of asking, the neurology appointment came through for over a month’s time. After a week or so of waiting and I was getting worse by the day, sat on the sofa unable to walk or move far, my husband called my parents who agreed to pay for me to see a private Dr as it seemed the NHS was not able to see me faster. Two minutes in the room with this consultant rheumatologist (we thought it was possibly damaged in my neck as it started with neck pains and couldn’t turn my head etc) and him seeing me walk he suggested I needed an MRI due to a rare problem with the brain as I ‘was drunk when not drunk’. I had a private MRI 2 days later, came home and had lunch and got called back to see the doctor an hour or so later…I knew it wasn’t going to be good news!
I was sat down and I saw on his computer screen this large white lump on my MRI picture, clearly a tumour in my brain. I was told then the neuroradiologist was 99% sure it was a benign hemangioblastoma and could be removed with surgery…
What were your symptoms?
- Feeling dizzy, losing balance, walking into objects (or thinking I will) feeling like I was walking on a boat (looking drunk when sober!)
- Legs feeling wobbly and weak
- Neck pain- sharp shooting pains. Head pounding at the base of the skull. Hurting when I turned around too fast.
- Headaches gradually increasing, including them waking me at night (especially if I laid on my front or tipped my head up)
- Increased head pain and dizziness when I coughed or strained
- Tingling/numbness in my head and neck
- Squinting to focus straight, vision jolting
‘It’s all in my head they said’
How are you doing now?
I had a tumour removed less than a month later on 18th May 2016.
It’s been an interesting journey, my tumour is supposedly all out and fine, and I am not seen as having any further issues by my neurosurgeon. But I still have daily struggles – fatigue, feeling unbalanced, being uncoordinated, vision issues, a numb head, head pains and soreness, neck tightness, being able to say what I want- certainly I am not able to respond as quickly, speech issues when tired, memory, not being able to multitask now, brain fog- all made worse when I am tired. But I fully appreciate it could well have been a lot worse. It’s made me appreciate life more.
What motivates you?
Knowing I have and am still helping others, with my book, blog and facebook group
What is the toughest challenge survivors face?
Navigating medical beliefs, especially those that are not right for you and doing anything alternative – where you are just ridiculed.
Knowing that when people think you look OK on the outside they assume the inside must be OK too…
Overcoming the frustration … of needing sleep, not being able to say what you think, not being able to do things the same as before, of having to change so many plans.
What is next on your agenda?
Hopefully, reach more people and help them go through similar without so much fear, pain and anger. Showing honesty and not pretence.
You can connect with me on my Facebook Page and join my Facebook Group which is a group that is only for those with hemangioblastoma’s (or family)
My 12 yr old son is home educated, so I am always at home with him, but when I feel able to I have been updating my website and blog. Occasionally I do some art (now very much more abstract!) and also help my husband with his bands’.
I didn’t have a job to ‘go back to’, and I don’t think it would be easy to be employed knowing I have issues with so many things and they can vary by day, I never know what I will wake up to.
Who is your personal hero or are your heroes?
Anita Moorjani – as her work got me through my craniotomy.
My neurosurgeon Timothy Jones – for the very same reason!
What would you say is the most interesting thing you’ve ever done?
I wrote a book and published it myself just 16 months after brain surgery!
My book is: ‘It’s all in my head’
available on Amazon – Check on Amazon
Any advice for people or loved ones that get daunting diagnoses?
You can always choose how to respond- it can totally change how you view the situation. If you will remember it as a nightmare, or a challenge.
Take time to listen to what ‘you’ want and not just go with what others suggest or fear based panic.
Look at alternatives.
For loved ones – just hold the person when they need it- and listen, help them find the answers they need.
Tell us something about yourself that people probably didn’t know… anything?
That I go to gigs almost every weekend. My husband plays the guitar and my son bass – in the same band!
It’s a good test to practice how I can always choose my feelings – I can find it too loud, irritating, panic and I cannot cope or I can sit back, relax, trust and enjoy the music
I am so grateful to Jo for sharing her story and I give a high-five for writing her story for others to benefit from. It is not easy to write a book which is so personal to a person and be so vulnerable to showing the good and the bad.
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