The doctor said I should go to the spa for my ‘stress migraine’. Days later I was in surgery
The illness has, at times, taken away my independence and stopped me from enjoying my man purpose in life.
‘Sorry I missed swimming, my head just doesn’t feel right!’
I sent that text to my husband at 9.30am on Sunday 11 June 2023, and then, it all went blank.
My next memory is waking up a few hours later to my husband, parents, brother and paramedics buzzing around my bedside. Apparently, I’d had a seizure and had been unconscious for 20 minutes.
Before I even had a chance to process what was happening I was whisked away to A&E and then the neurosurgery ward where, a day later, I had an MRI scan.
On Tuesday, doctors came to my bedside to reveal the results of the scan, and with just five words our lives changed forever.
‘You have a brain tumour,’ they said, and I broke down in tears.
Just a week before, I’d left the school where I worked as a teacher at lunchtime with what seemed to be nothing more than a horrific headache.
My head had been pounding all morning and when I started to get a tingling sensation down my left side, I decided it was best to get some rest. But it got considerably worse hour by hour.
That same afternoon, I dragged myself out of bed to go to the GP who concluded that I had a severe migraine. I was given a sick note for a week and told to go to A&E if it got worse, which, of course, it did.
‘This migraine is on another scale, I have never felt this bad before!’ I cried desperately to my husband.
Mostly I just stayed in bed, but eventually I did decide a visit to A&E might be for the best. However, their only advice was to take additional migraine medication, and to go back to my GP for a long term solution.
I felt like I was being passed backwards and forwards with no real solution in sight. It was exhausting. Yet, I never for a second thought my pain could be anything more serious.
‘Don’t worry, it’s definitely not a brain tumour or anything like that,’ they said.
As I didn’t know anything about brain tumours, all this did was make me feel at ease.
I didn’t feel worried, as any migraine sufferer would, I just carried on trying to ‘see it through’ over the coming days. All the while my symptoms were getting worse.
By the Wednesday, I couldn’t open my eyes as they were so sensitive to the light and my headache was still very much there.
The pain was almost unbearable. I’d describe it as an intense, sharp headache with occasional light headed spells. So, I once again went back to A&E.
This time around I was taken to the neurology day ward where, after being examined, it was once again concluded that all I had was a bad migraine.
One doctor even said my symptoms were down to stress. ‘You need to go on a spa day, take time for yourself and relax,’ he advised, before prescribing me a high dose of aspirin to relieve the pain.
Despite the host of medication I was now on, nothing seemed to be easing the agony. I tried to carry on as normal, even went out for dinner, but as I sat at the table all I could feel was the tingling in my face and the pounding in my skull.
A day later I had my seizure. And within 48 hours came the news it was in fact a brain tumour after all.
This came as a complete shock. My family were heartbroken and none of us knew what the future held.
We had to wait five days for the aspirin to work its way out of my system as it thinned my blood to the point the operation would have been even more dangerous than it already was.
But on Monday 20 June 2023 I had a craniotomy – the surgical removal of part of the bone from the skull to expose the brain – to remove my tumour, who I not so affectionately nicknamed, Richard.
Giving my tumour a name made the whole ordeal feel more manageable, and I couldn’t wait for him to be gone. Thankfully, the fantastic surgeons removed 95% of Richard, but my treatment was only just beginning.
In July 2023, following my major surgery, I contracted an infection which meant I had to have part of my skull removed.
I didn’t know it had been removed until after the operation, but the bone was infected and it had to be done to save my life, so I am grateful. If it hadn’t been, I wouldn’t be here today.
This area of my brain is now not covered by any skull bone, but is healed over with skin that is hardening with muscle.
Then in August 2023, shortly after having my Hickman Line put in, I developed sepsis. This was another hurdle in my journey, which delayed my radiotherapy by six weeks. I had all of the major sepsis symptoms, the main being a fever that was uncontrollable. I was even put on oxygen for a short period of time.
When all these infections were finally under control, in September 2023 I began 33 sessions of radiotherapy, which I completed without incident in November 2023.
Now, I am currently undergoing chemotherapy treatment, which is certainly no picnic. The sessions vary on with how it affects me; some months I deal with it well, others cause extreme fatigue and sickness.
I’m due to complete chemo in December this year, and I’m keeping everything crossed that will be the end of this whole nightmare. Because, as supportive as my family and friends have been, I’m ready for life to get back to normal.
Since my diagnosis, I have lost a significant amount of my independence. I currently don’t have my driving licence, I rely on my family to do all of the housework and I am yet to return to work due to my treatment.
My husband has also become my carer, yet still has to work a full-time job and look after our son. I honestly don’t know how he does it all but I am so grateful for him.
Still, I hate feeling like such a burden. This illness has, at times, taken away my main purposes in life – being a good wife, daughter, granddaughter, mum, friend and teacher – but with the amazing support from my neurosurgery team I have remained mostly positive and know that I am slowly getting back to being the real me.
The people at Brain Tumour Support have also been incredible. They helped me connect with people in similar situations to mine – I even plan to meet up with a fellow warrior next year when we have both finished our treatment – and were there when I needed help most.
Honestly, I don’t know how I would have coped without their support. To say thank you I’ve already collected over £1000 for the charity and plan to do more.
And while it lingers in the back of my mind that, as my tumour is a grade 3 (meaning it is faster growing than most), there is a chance Richard will start to grow again, I have learnt to just take and be thankful for each day as it comes.
That’s why it’s so important to me to raise awareness. I thought my tumour was a headache and doctors thought it was just stress and a bad migraine. This just goes to show how many signs there are that even medical professionals are not aware of, and how essential it is that you listen to your own body.
If something doesn’t feel right, if you have a headache that stops you from doing your normal daily life, are lightheaded or have vision changes, trust your instincts and get it checked.
Kimberley is a supporter of The Brain Tumour Charity’s ‘No Brainer’ campaign. You can find out more about the call for a National Brain Tumour Strategy here
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