My Right Temporal Meningioma Is Inoperable

Sarah Tomlinson from Abbots Langley was suffering from severe migraines and sinusitis for 4 years. Eventually, after having a biopsy she was diagnosed with a grade 1 Right Temporal Meningioma.

Here is Sarah’s Meningioma Story

I was having unbearable headaches that left me unable to sleep or talk. My symptoms progressed to short term memory loss, confusion and fatigue, with some interesting shock-like sensations causing involuntary body movements. After having an MRI I was diagnosed with a Meningioma.

In June 2016 I had a craniotomy to remove as much of the tumour as possible. It was suggested I have Gamma Knife Surgery, a type of radiotherapy. My husband and I decided not to have Gamma Knife surgery due to the risk of infertility and our desire to have a child, with the full support of my neurosurgeon.

I was then on Watch and Wait. The tumour was stable until October 2020 which showed significant growth.

Sarah Tomlinson brain scan 2016
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Scan Taken in 2016

Gamma Knife – Radiotherapy

The tumour was now too large for Gamma Knife or a craniotomy, the only option was Intensity-modulated radiotherapy (IMRT). I started my radiotherapy on the 8th of February 2021.  I am almost halfway there with a total of 30 rounds of radiotherapy.

Fatigue

I have to manage fatigue daily, I don’t travel too far away from home. Accepting all the things that continue to change and adapting to them as they come. I found the charity Headway very helpful with this.

Sarah Tomlinson
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What is the toughest challenge survivors face?

The toughest challenge for me to face is learning to accept my symptoms, constant problems and my new normal like so many other survivors.

Battling fatigue & anxiety is also very challenging at times. At it’s worse, it still leaves me unable to speak and socialise. Socialising is the hardest thing that takes away my energy levels, very quickly.

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

Getting through these challenging times is helpful to:

  • Stay positive. Live each day in the present. Taking each day one step at a time. Listening to your body’s needs and responding to them can be invaluable to your success, management and happiness.
  • The supporters on the other side, that want to help, offer no help at all when they message and ask “How are you?” “How are you feeling?” Through no fault of their own, they increase anxiety & fatigue, taking energy away from my reading messages and replying with repetitive answers and questions.
  • Dear supporters, the most helpful thing you can do is just let the sufferer know you are there for them, that you are thinking of them and make decisions like cooking food or turning up to do house chores rather than asking “How are you?”
  • I highly recommend others to blog as a way of communicating, saving energy and boost their mental health as I found blogging became therapy. I started a blog with my husband and gave the link to all my friends and families. If they wanted to know how I was they simply needed to read and follow my blog. You Can Follow me on my Facebook Page

What motivates you?

My finals at the University of Essex studying Oral Health Science was a welcome distraction from surgery and diagnoses. 4 years later with significant regrowth my 19-month-old daughter now motivates me to stay healthy and active.

Who is your personal hero or are your heroes?

I often think of Lance Armstrong and his battle with testicular and brain cancer and his determination to fight and learn all he could about the disease he was suffering from. To bring hope to so many cancer patients in need and still have the power to train and succeed in his career. Yes, he made some mistakes that he is not proud of, it is a human’s desire and brain wiring involuntary to remember the bad things. He continues to inspire me and many others despite his mistakes, he has made many wise decisions also.

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Sometimes I have bad days that I struggle to cope with and see no way out of it. People do not know this about me, they see the strength in me but we all have bad days and that is okay. Remembering it is a temporary feeling it will pass is helpful in the days I/we can’t cope.

If you wanted to buy a gift for a friend in the same position as you, what would you suggest?

When family and friends offered help, it was the little gestures that made things nice and helpful for me, things like turning up to do house chores, offering a massage and cooking food for dinner were welcomed more than texts and telephone calls.

 

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