"I am raising funds in Lee's memory in the hope that one day there will be better treatment for brain tumours or maybe even a cure"
Raising funds for The Brain Tumour Charity in memory of Lee.
Lee was a fit & healthy 47 year old when he was diagnosed with a grade 4 brain tumour, GBM. We had just become engaged & were busy planning our wedding for the following year.
Lee's symptoms had started about 7 months before the diagnosis with what we now know to be a seizure.
It was late November 2012 when Lee phoned me from Sweden where he was working to say that he had had a funny turn & was feeling very unwell. He was on his own at the time so wasn't really sure what happened. He wouldn't seek medical help in Sweden but as soon as he retuned back to the UK a few days later, I took him to our local A&E department. He was thoroughly checked over with an ECG, CT scan of his brain, blood & urine tests but no explanation could be found.
Lee seemed to be ok after the initial seizure so we didn't think too much of it. An appointment with the Neurology Team was booked for 13 March 2013 (Lee's 47th birthday). Leading up to this appointment Lee had a few funny turns where he would become disorientated & confused & his vision would become impaired, but much to our relief Lee was diagnosed with migraine.
Our relief was short-lived when a MRI scan on 26 April 2013 revealed a lesion on Lee's right temporal lobe. It seems the lesion was evident on the CT scan that Lee had had all those months before, but it had been missed.
Lee's surgery to remove the lesion was booked for 23 May 2013. The wait of nearly a month was unbearable. Lee was so strong & so sure that it would be nothing serious, but I had a gut feeling that something was very wrong. On the day of the surgery, if Lee was nervous he did not show it at all, he even managed to sleep whilst he was waiting to go down.
It was the longest wait. So nerve wracking as this was such unknown territory. Eventually I received the news that Lee was out of surgery & back on the ward. When I saw him I was so surprised that he was sat up, chatting away. You just wouldn't believe that he'd just had brain surgery.
Lee was home after a few days & we prepared ourselves for the results of the biopsy. Unfortunately my gut instinct was right & we were delivered the worst possible news. We were told it was terminal & that he had just 12-18 months
Lee took the news amazingly well. He didn't break down, cry, scream or shout. He accepted it with a calm dignity which would stay with him throughout his illness.
Radiotherapy & chemo followed. We decided to bring our wedding forward so during his treatment we were married. It was thrown together in just 5 weeks but it was the most amazing day. It was perfect, apart from the knowledge that ours would not be happy ever after.
In October an MRI revealed that the tumour had returned & spread. We were devastated. More chemo was to follow but we had lost faith in it. In February another MRI confirmed that the tumour was now 3 times the size of the original tumour. We were told that Lee's original surgeon would not operate again but another surgeon was prepared to. He was soon to be known as our "God".
After that second surgery in March Lee suffered with a break down of his wound & had a further 4 surgeries to repair this. He had a shunt inserted which diverted fluid from his spinal column into his tummy & eventually a piece of his skull was removed as the skin had become so thin it would no longer stretch over it.
Throughout all of this, Lee didn't complain once or feel sorry for himself. He often had to have stitches in his wound without any anaesthetic but didn't scream or shout, he just dealt with it. We spent a lot of time at the hospital & Lee endeared himself to all the staff. They all thought he was amazing, as did I.
An MRI scan in September revealed that the tumour had not returned in the initial site but had grown centimetres from it. We were given the option of a third surgery which we had not expected & Lee opted for it.
Lee bounced back really well after the surgery which was amazing considering all that he had been through over the past 17 months. However, 3 days after surgery Lee suffered a stroke. A&E discharged Lee that day even though he couldn't stand & said it was quite normal after surgery & he would start to regain mobility after a week or so. The next day Lee was in a bad way so we went back to A&E were they advised that he had massive swelling on the brain & would not survive the night.
My darling husband was not ready to give up the fight just yet & amazed the medical staff & all of us by pulling through. Lee was moved to our local hospice to recuperate but unfortunately 3 weeks later he slipped away with me at his side as I always promised I would be.