Richard and Jacquie
Richard, 38 had unexplained hearing loss over a number of years, until it was finally diagnosed as an acoustic neuroma – a brain tumour affecting hearing and balance. Find out how he and his wife Jacquie have dealt with diagnosis, surgery, Gamma Knife surgery and resuming everyday life.
Richard and I met in 2002, and he took on the role of stepdad brilliantly to my 3 girls, we married in 2003, and had our daughter Rianna in 2004. Over the next few years our life was lovely, grandchildren were coming along and Richard was working.
In 2007 he started to get hearing loss, so we went to the ENT doctor at Mount Vernon Hospital in Northwood. They gave him an MRI scan and a hearing test but nothing came back as to why his hearing was getting worse. They gave him two hearing aids and said that it was just an ‘unexplainable’ hearing loss. So that was that.
He was 38 years old and had just started out as his own boss as a Driving Instructor and I started to notice that his hearing was actually still deteriorating. I was having to repeat myself all the time to him. Finally, I got so frustrated with it I said he had to go back and see what was going on. It didn’t seem right that someone should go deaf for no reason and, what’s more, that it continued to get worse and worse.
Around March 2011 they did a further MRI scan and hearing tests on the same day. When he got home he got a phone call asking him to come back to the same department the next day for a different scan. They wanted to put dye in his bloodstream to do the test that way. They didn’t say why, so he went back and had it done. They told him to wait for his outpatient appointment and he would get his results then. About 6 weeks later we got the appointment and went back to the ENT department at Mount Vernon, and the consultant said to us: “Mr Taylor you have a brain tumour and it has to be removed”.
Our world crashed that day, we walked out in silence, not knowing anything, not having a clue about what was going to happen, why it happened. Lots of questions were going round in my head, so I couldn’t imagine what Richard was thinking.
For the next few months things were clearly not the same. I believed my husband was going to die from this mutant, ugly, lump in his brain. I imagined all sorts of things. I remember just crying when I was alone in my room or in the shower when i believed no one was around or could hear me. I kept looking at what we had built and was now looking at the prospect of life as a single mum; not as a happily married mum of 4. My world had changed with that simple sentence from the consultant.
We had to wait for an appointment with the neurosurgeon in Charing Cross hospital in London. We had a week’s holiday booked and didn’t know if the appointment would be before this or not. We went away on holiday and I was actually living it as if it was my last as husband and wife, or my last as a wife, because I could become a carer instead.
We finally got an appointment around June 2011 and were seen by Dr Mendoza. Richard’s tumour was confirmed as an acoustic neuroma, which explained his deteriorating hearing.The date for the operation was set for August 11th: a date that is as etched in our memories as much as birthdays and anniversaries.
We arrived on August 10th to get him booked in and have some tests. Even up to this point we didn’t have a clue what would be happening. Nothing was clear. The look in Richard’s eyes had changed once we got to the hospital that day. I can’t explain it, but he looked like a frightened child, scared to death. He didn’t know if he would make it through the surgery or not. He told me that day he had written us all letters in case he didn’t pull through. I put on a brave face and said of course you will, but inside I too wanted my mum to say “It’s all going to be fine Jacquie”.
The morning of his operation I got the train back up about 8 am with my older daughter. We sat with Richard till they came to get him.
The only thing that kept me from breaking down was how brave Richard was being, as always making jokes about it all, but I could see through this. My God, I had been with this man for 9 years, so I knew him pretty well. I’d say, he wasn’t fooling me, but it worked for now. They came and we followed him out of the ward on his bed. As they wheeled him off I still made a little light hearted comment. I entered the lift, his face still etched in my memory, and I then broke down, my daughter did too.
We had to wait 14 hours till he came out of surgery. I still don’t know till this day how I got through it. I had friends and family ringing me to ask how he was but I had not heard myself. I started ringing the hospital about 8pm. He had been in surgery since about 9am and so this was 11 hours he had been in theatre. No, they still said, he was in surgery. Finally, about 11pm I got the call to say he was in recovery. Thank God. I cried myself to sleep that night. It was such a relief to hear he was out of surgery.
The next morning I couldn’t wait to go back to the hospital to visit him. I’d asked my daughter to walk in the ward first to see how he looked, as I am squeamish and couldn’t bear to see him covered in tubes etc. She looked in and said he is OK. I cautiously walked round to his bed and he had a big bandage on his head and a small tube near his ear. I walked up to him and the first words out of my mouth were “How are you feeling?”. Not the best thing to ask, I know, but I didn’t know what else to say. He opened his eyes and that look of a scared child had gone, and I could see it was my brave husband lying there. He had survived….and so all those months of preparing myself to be a single mum were gone now, thank God. I hadn’t told our youngest daughter Rianna how serious her Daddy’s operation was. She had been staying at my sister’s for the week, but I knew then I didn’t have to explain to any of our children that it was just them and me now. I was so relieved, the man I had fallen in love with was now better and would need to work on his balance and all would be back to normal.
Richard came home two weeks later. His mum had also been admitted to hospital two days after his operation so I was visiting her in the mornings in Watford and Rich in the afternoons. My sister came with me to collect Rich and we drove home and got him back into his home environment and carried on living our lives.
Sadly Rich’s mum died. It was absolutely awful, but he managed to arrange her funeral, even though he was trying to recover himself.
Rich had a couple of falls because of his balance and I took him to casualty where he got the ok. We put it down to his poor balance. We moved house in February 2012, we needed a downstairs loo for Rich , so it was a new start.
Rich then had to have Gamma Knife surgery to shrink the remaining part of the tumour. They couldn’t remove all of it through surgery as it was too dangerous. I don’t understand exactly why but that’s what we were told. Gamma should be about 6 months after surgery and Rich had an outpatient appointment booked for after the Gamma was done, but we had not heard about the appointment for the Gamma Knife surgery. So he went for his outpatient appointment with Dr Mendoza and when he asked what he thought of the Gamma Knife Rich explained he hadn’t been given a date yet! Dr Mendoza was straight on the phone to them about why he hadn’t been seen yet. Apparently he got lost in the system! So 10 months later, instead of 6, Rich had the Gamma. I still don’t know how he did it. It takes a very brave person to go through that awful procedure. He had it done and came home the next day and we went back to our daily life.
I then started to realise he couldn’t be left alone in the house. I’d come home one day after collecting the girls from school and he was lying at the bottom of the stairs knocked out. So another trip to the local casualty department and we got the all clear. That was the day I realised I had now become his carer. I now couldn’t risk leaving him alone. He started to sleep unexpectedly, even after waking up 20 minutes before; he couldn’t bath alone in case he slipped and fell; he couldn’t walk the stairs in case he fell down them; he couldn’t walk in a straight line so needed assistance when out and about. Yes, he was alive, but he then became a dependant.
Rich couldn’t find work for 2 years. He wasn’t well enough and he couldn’t find a job that was not too stressful. But ultimately he did and now he works as a House Manager in a retirement complex just up the road from us, so I know where he is and if he does fall at least he is in a building. He has never fallen at work.
He has yearly scans to make sure the Gamma Knife radiation has kept his tumour shrunk. So far he has had 3 scans so that’s great.
We only found the Hillingdon Brain Tumour Support Group in 2015. I went along to a group session and the people there are amazing and so friendly. In just the first 6 weeks they gave us more information and help than the hospitals ever did, emotionally, as well as through meeting other members who have been going through the same journeys as us. They are so kind and helpful.
My life with Richard is different now. I do get angry inside about my changed life. It’s hard. He forgets things, he has mood swings, he sleeps more than a hibernating hedgehog, he has no energy. He still looks like the man in our wedding photos, but inside he has changed. I would actually go so far as to say that the symptoms I’ve mentioned get stronger and stronger, because a few years ago I didn’t notice a lot of the changes in him but now it is almost on a daily basis. I didn’t sign up to be a carer. I have to now adapt to live my life round him. We can’t just make arrangements to pop somewhere, we have to see what he is like on that day, his moods, his tiredness. It’s a life-changing experience for all involved with brain surgery, and it will never ever go back to how our life was. But what keeps me here is because he is alive and for that I am thankful, and he didn’t ask to be like this. I still love him and always will.