I can’t believe it has been one year since the ‘bean’ was removed from my head -what a journey it has been!
At times I have struggled with my thoughts as to whether I should share this personal journey with everyone but after looking at the increasing rates of brain tumours being diagnosed I decided to share, slowly! If my symptoms can help another person seek help before too much damage occurs, it can only be positive. Keeping quiet helps nobody…
So in the last year what have I learned? So much! Before my own journey I had no idea that Brain Tumours are the biggest killer of adults under 40 and children, I simply had no awareness and let’s be fair, not many of us do. Part way through my recovery I had the pleasure of getting to know the lovely Anna Swabey who had a terminal brain tumour. She was so full of life and positive energy that I could not help but join that force!! She had an infectious zest for life. Sadly we lost her in September 2016 and I know I really felt it. Until this point I had no idea how much I had grown to adore Anna. We had NEVER physically met, our exchange was purely through social media both on her public and personal accounts. She introduced me to the Brain Tumour Research Campaign and the rest is history. However. I only became privileged to know Anna because of my mum. During my recovery I stayed with my parents. Mum read her usual Sunday magazine and one Sunday night in March she said ‘read this, it’s really interesting,’ that’s how I came to know Anna ☺️ We had two very different tumours with very different outcomes but our goal was the same, to live and to raise awareness of these horrible tumours. How can this illness only attract just 1% of the national spend on cancer despite being the biggest cause for loss of life where cancers are concerned? Anyway the BTRC and MPs are busy lobbying for this to change. When you are diagnosed (which is a huge frightening shock) you want all the answers- how,why,could I have? Sadly there is little point in asking as the Neuro/Oncologists do not know the answer to these questions in 2017 due to funding…What they can do is to try and save your life and/or decrease the damage by removal, if this is an option. It is a daunting place to be as the word ‘benign’ clouds the judgement of the fact that having the tumour is still very serious. My tumour was approximately 4 x 3cm in size, a small lime, yet it caused so much damage! Had I not reported ongoing symptoms I could have lost my sight permanently. My optic nerve was stretched tightly over the growing tumour and one day would have snapped causing instant blindness. I am a driver so the thought doesn’t bare thinking about! So what were my symptoms and for how long?
Persistent frontal headaches that would not respond to any painkiller, no matter how strong in strength. Only rest with an ice pack on my forehead seemed to work. I recall being in so much pain that I rang the NHS direct number for advice as it was pointless going to AnE. It was a nurse who suggested the ice pack, thank goodness for her!! This became my saviour for the next 2 years.
My vision changed quite suddenly which was checked and my glass lenses renewed but it changed again quite shortly after but nothing was picked up during the eye tests.
A strange black fluid was increasingly present in my nasal mucus with an odd smell.
I started to smell ‘smoke’ which noone else could smell.
There was often a ‘misty’ atmosphere which again, noone else could see.
I would sometimes forget the words I needed to complete a sentence but this only happened when I was tired at the end of the day.
Towards the latter end of pre-diagnosis my walking/balance felt weird. I was often tripping, taking too large a stride and sometimes felt as if I was leaning to one side and would fall whilst walking!
I kept bumping into door frames, completely missing the angle of the entrance despite knowing the layout.
Three years ago I decided to regrow my hair after wearing a short hair style for 8 years. To my horror I noticed that my hair was growing but also balding. It then started to fall out at an alarming rate. Each time I washed, combed or slept I would wake up to hair all over the place. The most disressing was hair washing sessions. God bless my mum as she became my hair washing support buddy after each hair washing session. She listened to my frightened concerns and heard me cry on so many occasions.At this point I was referred to several dermatologists before finally seeing a lovely lady at the hospital. Here I was biopsied and told I had a permanent type of alopecia. Devastating! I used all the steroids/shampoos provided but it only slowed the hair loss, it didn’t stop it. But again, when I first approached the GP I was met with ‘oh well, it’s your age etc etc etc and sarcasm that left me in tears. People have NO idea exactly how devastating hair loss can be, especially in females.
Started to feel faint sitting down which would be intermittent.
Facial, body twitches and body tremors started a few years ago and increased significantly.
Now you will say, so what did you do about all of these symptoms? I visited my GP no less than 20 times over 8 years. I knew something was not right but I had no idea what it could be. All of the symptoms were always attributed to a condition of some kind of which I never really had any of them- all false diagnoses! I requested scans which were declined and told to keep a headache diary as they felt my migraines had ‘changed pattern’…the body twitches was put down as ‘Essential Tremor’ and this was diagnosed by a private consultant… not one medic looked at my symptoms as one person. If I tried to encourage them to do this I was met with resistance ‘I’m the doctor’ syndrome but not in so many words. It got to the stage where after one of my GP appointments I returned home so upset and told my kids that I wasn’t going back no matter what happened- I no longer cared. They were just so dismissive and made you feel like a hypochondriac. Thinking back the GP was not the only person guilty of this.
Fast forward to a GP that joined the practice with an enquiring mind. She listened to my symptoms about the nasal discharge and decided after reviewing my notes that there was no point in guessing, she would send me for a CT scan to see if there was a sinus infection. The results of this took 5 weeks which was odd so I rang the ENT clinic who placed me on hold for 15 minutes. It was a strange conversation but the bottom line was, she knew more than I did but could not divulge. Still, I was not alarmed. A few days later I received a letter from the GP to ring and make an appointment but this time the letter did not say THIS IS NOT AN EMERGENCY. Still, I was not alarmed so I did. Fast foward a few hours and I’m in the middle of a car showroom in Essex when the lovely GP rings and she’s stuttering. She’s asking me all sorts of weird questions ‘have you been bumping into things, how is your eyesight, headaches?’ I stopped her and said where are these questions coming from? She replied that a large mass had been found in my head during the CT scan for my sinus!!! I thought I was going to be physically sick, the showroom was spinning and the tears flowed instantly. I looked across at my youngest son happily chit chatting with the car salesman and all I saw was my mortality right in front of me. The feeling was further compounded as I had lost my beloved uncle 2 months before to a malignant brain tumour so you can understand why my feelings were intensified.
Fast forward 2 months- MRIs, blood tests and surgery lined up for 23rd February 2016. The Neurology, ENT and Endocrine team were all amazing. I spent 5 days in hospital and was looked after really well. My immediate recovery took quite a while as I experienced several fallouts of tumour surgery. Whilst the surgery was successful the pituitary gland was damaged and had started to fail by May. This caused another issue which was very serious. The loss of 2 hormones, one in particular ACTH meant that I could no longer produce Cortisol which basically keeps us all alive. I am now on life long therapy to replace this hormone and have a rare condition known as Addison’s disease. Without this therapy you will not live and should you have a major shock, accident or become sick you have to be injected with emergency hydrocortisone and be admitted to hospital. I had not bargained for any of this but I am still eternally grateful for life.
I had good news in August, the tumour was completely removed and was biopsied as benign! 🎉👍🏽👏🏽🙏🏾 Every August I will have an MRI of the brain to ensure the tumour does not return. If it does, the Neurosurgeon advised we would be one step ahead so no invasive surgery but Radiotherapy instead to zapp the bugger into oblivion!
Today I am extremely thankful to God, my family and friends. Not everyone understood or made an appearance but that’s life, I have no time or energy for grudges. Life goes on when you are fortunate to be here.
I have before and after MRI images of that ‘bean’ in my head. These images will always remind me not to take life or people for granted. My outlook on life HAS changed although it may not be physically evident, in my thoughts I think about everything in a different way pre -tumour.
Lots more to share in between life and my studies which I complete in the summer ☺️
A huge loving thankyou to my cousin who nicknamed me ‘beanhead'(read the beginning of my blog😂😂) she stayed with me in mind, body and soul no matter what day or time of night it was.She is a true soldier of strength to me and for that I am eternally grateful ‘Mother Mouse’ ☺️😘🙏🏾❤️
Wear a hat day – Friday 31st March 2017 in aid of the Brain Tumour Research Campaign. I am looking after merchandise that you can donate money for. Get in touch if you would like a pen, pin badge or car hat for the car grill! 🎩👒