Hello there, my name is Lucy and I am 29 years old. I am going to tell you why Team Lucy is doing the Twilight Walk to raise funds for The Brain Tumour Charity.
I had suffered recurring hiccups for years but despite several visits to my GP, nothing cured them.
It was only after they started to wake me up at night that I was referred to an ear, nose and throat specialist who suspected paralysis of the vocal cords on the right side. Because of this, I was referred for a CT scan in December 2014.
Nothing could have prepared me for what came next...
I was out with a friend on the 30th December 2014 (a couple of weeks after my 25th Birthday) when I received a call at 7pm from a surgeon that changed my life.
He told me that I needed to go to the hospital the following day and that it was really important. He said he'd be waiting for me and that I should take my Mum and Dad. I asked if it was serious but he couldn't tell me anything over the phone.
When I met him the next day, I found out that I had a brain tumour, the size of a lemon, on my brain stem that would kill me if it wasn't removed quickly and he had already booked the necessary surgery for the following week.
I underwent six-hour long surgery on the 6th January 2015, which removed 80% of the tumour, and was taken to the Intensive Care Unit to begin my recovery.
However, when I didn't respond to checks, the medical team discovered a blood clot on the brain and I was rushed back for further surgery.
I was placed in an induced coma for four days, eventually gaining consciousness on the Saturday.
When I woke up, I was very poorly. I couldn't talk due to a tracheostomy and I was being fed by an NG tube. I also couldn't see properly and I had to learn to walk again.
I eventually managed to get myself back to work and also got my driving licence back, however, after over a year of fighting to regain my health, on the 1st November 2016 I had to have a second brain tumour removed from the same place, as it had regrown. At first, everything seemed to have gone well but then I developed hydrocephalus and had to have a shunt implant in my head to drain excess fluid. I was discharged from hospital on the 25th November 2016, however, I wouldn't be at home for long. I began to experience severe joint pains and after visiting A and E on four separate occasions, I was finally diagnosed with meningitis on the 31st December 2016 and had to have emergency surgery to remove the infected shunt.
During my admission, I went on to develop ventriculitis and I also suffered two seizures and a stroke. I was transferred from hospital to a special Rehabilitation Unit on 31st May 2017 for intense rehabilitation. At this point I was being fed directly into my stomach via a PEG feeding tube. As part of my rehabilitation, thickened fluids and pureed foods were introduced.
Following discharge from the Rehabilitation Unit in August 2017, the Community Speech and Language Therapists, who I saw regularly for speech and language therapy, recommended a fork-mashable diet, but advised that it should be safe to have more 'normal' foods for snacks. However, in October 2017, I experienced a near fatal choking incident which required physical intervention and resuscitation from my partner and Paramedics. Following this incident, I noticed that my oxygen saturation levels were very low and on admission to hospital, I was advised that I had developed pneumonia and lung sepsis. In December 2017, I had a Videofluroscopy where it was recommended that I have puree foods and thickened fluids. The Videofluroscopy was repeated again in June 2018 and the recommendations remained the same. The NHS Speech and Language Therapists advised that these would be the recommendations for life and that there was nothing more that they could do to help me, which was absolutely devastating because I love my food!
Since the end of 2018, I have received sessions of Dysphagia and Speech and Language Therapy from a private Speech and Language Therapist and the results have been incredible. I am now safely eating a fork-mashable diet and am able to drink normal consistency fluids, when using a straw. Some people still struggle to understand my speech, especially over the telephone, however it is much better than it was. The only person who could understand me fully, prior to these sessions, was my partner. For a long time, the only way that I could communicate was by writing on a children's magnetic drawing board and I had to have family and friends make phone calls on my behalf.
At the beginning of July 2019, I had to have my 10th brain surgery to have an additional shunt fitted as a cyst had developed. The meningitis and ventriculitis have sort of 'stuck' the ventricles in my head together, stopping the spinal fluid from passing through normally, so that the fluid had collected together to form a cyst which was really affecting my balance, etc. I am pleased to be able to report that the surgery went very well and I should never have to have brain surgery ever again.
The Brain Tumour Charity is the world's leading brain tumour charity and the largest dedicated funder of research into brain tumours globally and I am sure that by raising funds for them, we will eventually find a way to stop brain tumours.
I was very lucky in that both of my tumours were benign, however, the effects have still been devastating. The Brain Tumour Charity funds research into both benign and cancerous tumours.
Please sponsor Team Lucy which is made up of some of my wonderful family and friends and me, to complete the Twilight Walk. I probably won't be able to complete the whole walk, but will do as much of it as is physically possible. Any donations to this wonderful charity are greatly appreciated. Thank you.