When people worry they have a brain tumour you might think they are being dramatic and that really they have a headache. I thought brain tumours were rare. Maybe they are - but not rare enough. I can type for England and I can talk about it for England - because Brian is all that is on my mind most seconds of most minutes.
When Brian first became ill with a brain tumour. I found it difficult to find information about the disease or inform myself with other peoples similar experience of this wretched cruel disease.
And so I thought I will tell our story in the hope that it might help someone else in some way face the most difficult journey. Maybe it will help carers of people with this condition most because as close as I was to Brian I cannot tell his story from his perspective.
The first sign of anything wrong - in around June 2015, Brian said he had an experience where he felt strange. A sensation whilst he was driving at work that made him feel he was going to die right there. He struggled to explain it but he said it started in his feet and worked its way up his body - this sensation. He thought about his children and me as his partner and he didn't want to die there and then. The sensation stopped after a minute or so but it frightened him. He tried to explain it to me and I tried to understand.
He didn't tell me at the time but he was experiencing headaches and later commented on this after the event. He had further episodes - like a kind of seizure. Again being only 41, strong fit and healthy we didn't know what was happening. Every so often a look of fear would come over his face and he would feel this sensation. That I could not see from the outside. He just described it to me as 'sh*t in his brain'. I worried, tried to work it out. Was he having anxiety attacks? Was it a side effect of drinking too much alcohol (which he did). When he said 'sh*t on his brain' - what on earth does that mean? I thought he meant thoughts and feelings. As I say he struggled to describe it and I struggled to try and understand. I thought he might be depressed and anxious - he was always far too busy - always busy. Maybe too much stress I thought.
I was with him often - once I noticed his eyes lacked shine and they looked incredibly dull. Again I thought he was tired. I thought maybe he was having doubts about us? I envisaged and tried to think of a whole range of explanations.
It went on like this until August 2015 - trips to the doctor (with much encouragement) - resulted in anti-depressant and beta blockers for anxiety to be prescribed. No improvement. One occasion out of the blue he told me by text he was in the supermarket, that he had to put his basket down and leave. He couldn't tell me why. He said he was in a bus shelter 'thinking'. Really odd behaviour for him - but it reinforced to me he was maybe depressed if he was 'thinking' in a bus shelter and couldn't do his shopping. Little did I know. He wouldn't tell me where he was - he drove home in whatever state he was in (we didn't live together). I had sent him a keyring with an I love you message on it. He sent me a picture of it to show it was received and said he would be fine.
He began feeling very run down and tired throughout August. Towards the end of August I had a pre- planned holiday with my wider family. I thought it would give him a chance to rest and recover from his fatigue while I was away. At the end of August - he was sleeping whilst on annual leave an awful lot. I thought he was exhausted and so I encouraged him to sleep. All afternoon and night Thursday, all afternoon and night Friday and through to Saturday afternoon. By which time I was becoming very concerned. That much sleep should alleviate stress surely? I asked if I could see him - no reply. Intermittent messages telling me he had fallen to sleep again. I went to see him and didn't take no for an answer. I knocked at his door - he came downstairs and tapped his fingers on the glass of the door and then let me in.
He seemed still very fatigued, a bit jumbled. I talked to him about depression and how this wasn't the kind of symptom I would expect. I tried to establish if he was unhappy and if so what about. But something didn't feel right to me - I just couldn't make sense of it. He wasn't really the kind of person to give in and go to bed. I just couldn't fathom what else it could be - it never occurred to me that it could be what it turned out to be. I could see he was exhausted and that it was taking him a great effort to speak to me. I worried about his stress and fatigue. I left him to go back to sleep but all the way home I felt something just wasn't right. I worried and texted him to say I wasn't comfortable leaving him and felt something just wasn't right. Later that evening. His daughter strongly encouraged him to ring me - he didn't make sense on the phone. His daughter told me - he was foggy and not himself and very sleepy. I drove back to his house and his children had called the emergency doctor. He had deteriorated and now couldn't have a conversation and couldn't really acknowledge me or talk to me. He wouldn't drink, he couldn't really talk and was so tired. In the end an ambulance was called. I thought he had had a nervous breakdown of some kind - after all he was physically young fit and healthy. It must be stress? What else could it be. That really saddened me - that I couldn't protect him from stress. On arrival to A &E it became evident that he was light averse and he tried to turn the lights off in the A&E department.
At first they thought it could be meningitis and blood tests were taken. He was given anti-biotic intravenously just in case. And it was planned that he would have a CT scan to 'see what was going on'. My worries about some kind of breakdown were dismissed and I began to entertain the idea that he was unwell physically. He went for his CT scan and I waited outside. A nurse came to me and asked me to confirm his address. He was so confused he was saying his older address where he used to live with his old partner. I told the nurse the correct address and worried that if he thought he lived at the old address did he even know who I was given that I didn't know him at that point in his life. I knew I needed to worry when a man in a shirt and trousers was asked to go in the scanning room. I knew he was a consultant - and I knew that wasn't a good sign. I knew at that moment that something was very wrong and this wasn't just a precautionary scan to rule things out - they had seen something.
After the scan they let me go into the room. Brian was sleepy but conscious. I lay over his torso and cuddled him. I was worried now - very worried. As we made our way back to A&E we walked past the room where the consultant was analysing images of someone's Brain. I looked over his shoulder as we passed and I saw a scan of a brain with light a round circle at the left hand side of the brain scan image that looked a different colour to the rest of the brain. I said to the nurse - I don't like tests like these because it invites results doesn't it? She didn't reply. I think I was still hopeful I was being in someway paranoid or dramatic.
We were taken to an individual room and I was offered a cup of tea and biscuits. I think I knew then this was not the usual service you might expect to receive in a busy and frantic A&E department. Two doctors entered the room - and they said the words that would ruin our lives. Something along the lines of -Brian has what we think is a brain tumour. We cannot be sure until we do an MRI scan but we are fairly sure this is some kind of mass and possibly a tumour. The doctor asked Brian if he understood what she had said. He said 'yes its alright love' and the doctor said 'it isn't Brian is it?' He wasn't fully with us and he didn't seem to have absorbed the magnitude of what she was saying to him. He wanted to sleep. Again I lay over him and held him. He went to sleep. I cried silent big fat hot tears. Fear was gripping me now.
It was the middle of the night - and just like that our worlds had been turned upside down. I had promised his children I would tell them any news - but I couldn't tell them this over the phone and certainly not by text despite my promise to keep them informed. I worried all night about how to tell his family - and which member of the family to tell. I asked the doctor - how do I tell his children this? How do I tell his Mother this news? He couldn't really answer. But I decided in my own mind - I would wait for daylight and a respectable early morning hour and ring his Mum. The only adult I had a contact number for at that time. I dreaded doing it - I was inconsolable and in a surreal state of disbelief. But I knew I had to tell his family as gently as I could that we needed to be worried and that Brian was seriously ill. I made that call - it was difficult and I said it as gently as I could - he needs more tests but they have found something on the scan - a mass - that is of concern. I think his Mum was so in shock that she couldn't bear to hear it or absorb it. I asked her to tell the children's mum because I couldn't make the decision to tell them. It was her decision to make. Brian wasn't well and it wasn't my place.
I sent my own Mum a text message that simply read -'Mum he's got a brain tumour'. I was exhausted and reeling and I let Brian sleep and left to go home - my Mum picked me up a few miles away from the hospital. I had left and just wandered aimlessly trying to process what had just happened to my beloved partner. How could this just happen? I thought brain tumours were rare? Will he die? Maybe its not a brain tumour? Hes only 41 surely they will be able to sort it out? By the time I got in the car I was hysterical. Exhausted and hysterical. I love him you see - I love him and I need him and I contemplated losing him and then assured myself they could do something to make it all better.
