Cyril and Becky
Having been told he had sciatica, Cyril was diagnosed with a meningioma brain tumour in 2008. Their struggles to secure treatment and come to terms with the impact on their young family led Cyril and his wife Becky to set up the Hillingdon Brain Tumour Group.
In everyone’s life there are challenges, obstacles and basically tough times, but in 2008 we had no idea that we were going to be riding one very tough, long storm that was going to test us individually and as a family for many, many years.
It was a normal year – kids mad, husband working, me working, putting everything into our new property we had just bought. Then after a family holiday, I had a call from Cyril, my husband, to say he was on his way to A&E after having a shaking limb and a dead leg. He wasn’t too worried and after seeing a doctor he was sent home. That was just the beginning!
The next few days went past and he went back to work as normal. Then, the same thing happened, again and again. The shaking became worse and the numbness lasted longer with the pain becoming excruciating. It was so bad that Cyril couldn’t get to work.
There was one doctor’s appointment after another until they finally diagnosed sciatica. However, these shakes were, in fact, partial seizures and were happening up to 10 times a day. As a family this was distressing. We could not go out with Cyril as he would have a fit. The girls aged 4, 6 and 10 were scared. They would try and make Daddy as comfortable as possible, holding his hand and telling him it would be over soon. The fits continued with Cyril crying in pain. Back to the doctors again and up to hospital to have physio on his back.
A year went past – a year of pure hell. This was ridiculous. No one would listen. This wasn’t sciatica – that, I was sure of. Back to the doctors again and this time I gave Cyril a list of what it could be, all neurological issues. The doctor wasn’t having any of it. Cyril came back so upset. He had had enough with life, he couldn’t take any more. We both sat and cried.
By now, the situation was awful. Cyril couldn’t work: his company put him straight on zero pay because it was “only his back”. His fits happened every hour. The whole family were frustrated, upset, distraught, with nowhere to turn.
As the days passed, a friend suggested we go private. I called and got an appointment that week. The spinal surgeon we saw immediately knew it was Neuro and requested a MRI scan ASAP. The following week back we were again in hospital, this time not prepared for the news to come. It was a beautiful day. I remember thinking this it! Finally, we will find out. I bet it’s MS or Parkinson’s. We sat down and the consultant had a very grim look on his face. “It’s a serious brain tumour,” he said “I shall send you straight onto the NHS.”
We were both stunned. Brain tumour? What’s that?! What does it mean?!
We were then shocked again when it came to paying our bill – nearly £4000! Thank heavens for credit cards.
Well, at least, we found out what it was: a meningioma tumour situated on the sagittal sinus (the main blood supply to the brain) and also on the motor sensor. I thought, surely they must be able to operate on it. After three months wait for an appointment on the NHS we were devastated to be told “we can do nothing “. They said it as it was on the main blood supply and, although non-cancerous, it would kill him. It could happen any time. We came away shocked.
Cyril’s seizures were still out of control. Medication had been given as we were told it was partial epilepsy, however, it wasn’t working. Not only did we have uncontrolled seizures, now we been told that he was going to die and nothing could be done. The operation was too risky. No one would do it.
By now, things were bad. We’d had no money for months now. I was working as much as I could and looking after Cyril and the girls. We were relying on a friend to help us and get us food. It was awful. Thank god for our friends: even now I don’t know if they realise how much that meant to us!!
Now, I am not one to give up easily and certainly not when my husband’s life was at stake. I searched high and low, night after night, for neurosurgeons in the private sector until I found three. We booked, once again, private referrals for all three. One in particular stood out. Dr McEvoy: he was confident he could save Cyril and stop his seizures in two very large operations. Yes, there was a risk but there’s a risk with everything and we already knew without the operation there would be no life! We didn’t have time to think. The operation needed to be done ASAP, so the following week Cyril was at the National Hospital for Neurology and Neurosurgery in London for the first of two long operations.
It was scary, it was hard! The first operation lasted around eight hours, the second operation – a full craniotomy went on for ten hours. I remember how I felt: would we see Cyril again? What would happen if it went wrong? What would happen if he was paralysed, lost his sight? There were so many issues. Were we doing the right thing?
After each operation, relief. I remember at that time I was just surviving. Have you had that feeling? I was just making it. One time, I travelled back from London and could not remember who had the kids! It was work, kids, hospital, maybe a little sleep, not a lot.
Cyril’s operation went well and that was good news. However, the pain and the nerve damage were to take its toll.
At that time, more tragedy struck. My Mum found a lump in her breast. It was cancer and she was called straight in for a mastectomy. Both our dads had already passed away a few years ago. Then Cyril’s mum became ill. Hospitals upon hospitals. Mum recovered from her operation and unfortunately Cyril’s mum passed away. Then my mum suffered a huge heart attack but survived
It took its toll on our family and it’s fair to say we still struggle; the kids went through hell and they have been affected “big time” emotionally. As Cyril’s tumour was non-cancerous, we had no support, no one seemed able to help, not even the major charities as we didn’t fall under ‘cancer’! I was very ill afterwards and ended up in hospital with sepsis and a collapsed lung, which had a big impact on the children.
We never wanted anyone else to go through our nightmare, so after Cyril’s operation we decided that through our bad experience we could help save other lives as we had saved Cyril. We wanted to support others and set up the Hillingdon Brain Tumour Group in 2009 to do what we could to help.
Our first meeting of Hillingdon Brain Tumour Group was amazing. The emotion and the relief we saw on people’s faces as they walked in seeing that we understood, we cared, we could help. There were tears, hugs, a family, a band of brothers and sisters was born! This band grew and grew.
And now? Well, I was diagnosed with a brain tumour last year! Unbelievable, but true! My own journey is starting. I know I am lucky as I have the group to support me. We will get through whatever challenges lie ahead with the same attitude that has got us this far: where there is light, there is hope: where there is hope, there is life.