Claire Bullimore Brain Tumour Story

Living With A Meningioma: I Won’t Let My New Diagnosis Define Me

Brain Tumour Story about Julie Liddle

Julie Liddle was diagnosed in 2011 with an inoperable Meningioma. Here is Julie's story of living with a Meningioma.

Julie had been suffering from debilitating headaches for years. After it was getting too painful and no painkiller was helping, Julie asked her GP (General Practitioner) to investigate more in-depth.

An MRI showed a 5cm brain tumour was resting on the transverse sinus. She was able to have surgery two weeks later, and the surgeon was able to confirm the Meningioma was benign. Although that was a relief for Julie and her family, the surgeon explained that he was unable to remove the tumour completely. It was attached to the transverse sinus and it would be too dangerous to remove it entirely.

Julie Liddle Interview about living with a meningioma

There are over 50 different subgroups of meningioma and most can be removed fully with surgery or Cyberknife.

After Julie's surgery and recovering from all the problems that came from her surgery, it seemed things were going well and life was going back to a more comfortable way of living, she was able to work and even go back to college to get a degree.

I originally met Julie on my Facebook Group in 2012 and then had the chance to interview her on my ‘Brain Tumour Thursday Radio Show' in 2014.  Listen to the segment of our interview HERE

After being a person who was looking for support, soon it was Julie giving others support. She went on to join the Brain Tumour Support as a Support Group Worker. Things were going well.

Keep reading to find out how Julie handled living with a Meningioma.

Until now! Six years on from her original diagnosis, It grew! 

It was in November, Julie shared that her tumour had started to grow again and she was back on the battlefield to follow the surgeon's expertise in how they would be treating the new invader.

Read Others Stories:

A Mothers Love Is Like No Other

Mother of 4 was Diagnosed with a Hemangioblastoma

Surviving and Thriving Glioblastoma Multiforme – David Grant

My Brain Tumour Left Me Incredibly Positive

My Brain Tumour Left Me In A Mess

Hi Julie, how are you doing since your new diagnosis and recovery?

I was in shock and disbelief that it was back, like a numbness.

I did struggle with my emotions in the beginning and was able to access some counselling, although it was not the best and I ended up leaving the job I loved, managing a nursery as it all became too difficult.  This was a massive loss for me as I a week before diagnosis I had graduated with a BA Hons degree in Early Childhood Studies

What do you do now in your life in the week?

After I left managing a nursery, I decided to train to become a counsellor. This took 4 years of study and practising counselling, I qualified in November 2017. In December 2017 I left my Brain Tumour Support Worker position, my dad was very poorly, and I wanted to pursue a career in counselling. In May 2018 I set myself up as a self-employed counsellor and so during the week I see clients; both children and adults. By seeing children, my degree is no longer wasted.  I am also studying a Diploma in Psychotherapeutic Counselling, which will give me some more confidence to set up an independent practice. I love walking my dog, looking out across the bay, every day it looks different.

What motivates you?

This might sound strange, but my brain tumour motivates me.  It does not define me in a negative sense. Instead, it makes me determined to achieve, to make the most of life. I especially like the outdoors and walking my dog. I have 3 daughters, they also motivate me, I want to be a part of their growth and independence.

 

Interview with Julie Liddle on her Meningioma

Who is your personal hero or are your heroes?

I really don't know. However, I do admire all brain tumour patients and their carers. Someone like you Claire, I found your facebook support group invaluable in the beginning.

What would you say is the most exciting thing you’ve ever done since your diagnosis?

On my daughters 21st birthday we climbed Mount Snowdon, it was a struggle, but with the support and encouragement, I made it.  I braved a busy, loud place and saw the singer Paul Young, I was so close to the stage I held he had for a few seconds!!

What is the toughest challenge survivors face?

I think the toughest challenge is finding normality, and accepting that it's likely to be a new normal. I believe this entails grieving the old self.

Any advice for people or loved ones that get daunting diagnosis’s?

Access support when the time is right for you, whether it be support medically through a clinical nurse specialist, accessing local practical support and information, emotional support, and making contact with others who have also been affected.


Conclusion

I am so glad to be a part of Julie's life and having seen all the amazing things she has done over the years since living with a Meningioma. She shows that although life throws you curve balls, she is never giving up on living the best life as she can and will continue to do so.

 

Do you know of someone living with a Meningioma?

 

 

 

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Mother of 4 was Diagnosed with a Hemangioblastoma

Mother of 4 was Diagnosed with a Hemangioblastoma

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
  • Clumsy

‘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

Brain Tumour Story about Jo Barlow

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


Conclusion

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.

 

Other Brain Tumour Book Suggestions:

Book Suggestions

 

 

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Claire Bullimore brain tumour Story
Helpful gifts for a person affected by cancer or benign brain tumour