The days that followed the initial 'it could be a brain tumour' discussion didn't bring much information and we were left unsure, uncertain guessing what the future was to hold optimistic, then worried. Then frustrated, terror hope and fear. No answers - always waiting for this result and that result and this test. In fact I think we didn't actually know exactly what we were dealing with for about six weeks. Was it malignant or benign? Was it a tumour or an abscess? Was it curable? Was it primary or secondary? Is this going to be terminal? Many questions - no answers. What type of tumour is it if it is a tumour? We don't know until this test that test and the other test and wait for this and then wait for that.
Brian was given steroids and this made him a little less fatigued and confused, We could finally have a conversation that made sense and he now knew who was there visiting. Many visitors from his family and none of us knew what was actually really happening. All I had was fear and the knowledge that a brain mass of any kind is not good news. But am I dealing with losing my partner or can you make him better? Because the difference between the two is massive and I don't know what you are asking us to deal with here. Brian doesn't know - I don't know. Nobody knows.
I asked them to tell me countless times. A doctor came a few days into Brian's admittance to an oncology ward and told us it may be an abscess. They don't know yet - I was hopeful because I didn't know how serious that could be but I hoped it would be better than a cancerous brain tumour. A day or so after that another doctor said - he had a full body scan which did not reveal any other tumours or irregularities in his body. Because I had been self educating again - I knew the prognosis for a primary tumour if benign would mean he had a chance of survival. A secondary tumour would be more challenging. So I thought this was good news. Maybe later that day or was it the next day - we were told just because the scan didn't reveal any other tumours does not mean it is not secondary - it could be secondary melanoma. I fretted about this because I knew melanoma could be a nasty version of cancer. It was all guessing and surmising. One of his relatives mentioned there had been someone in the family who had once required treatment for melanoma/treatment of a mole. That made me think - maybe that is what we are dealing with. Fear again - abscess or secondary tumour caused by melanoma? Primary or not primary. Torment. A huge spectrum of bad to very bad to extremely bad and we were tormented in this wondering for weeks.
Brian did not seem to be fully taking it all in - he was ever polite and kind to the nurses but didn't seem to be asking many questions or understanding fully how bad this could potentially be. I didn't want to panic him but inside I was terrified for him. In fact because there was no news, no firm diagnosis nobody seemed to be in a panic except me. Perhaps I was being pessimistic because everyone else seemed hopeful? Another day - we were casually told actually there are two tumours not one. Dropped it into conversation as a side issue. Temporal lobe left and frontal lobe. Brian wasn't himself fully but he was more himself than he was when he was admitted - steroids were helping. A doctor came and said because he was admitted on a bank holiday he had not been included in the doctors meeting that happened every Wednesday morning. And so they wouldn't bother to chat about him until the next Wednesday. Brian simply accepted this and didn't argue - he was kind and trusting and so easy going. I on the other hand was furious. I told the doctor they were being extremely cruel tormenting us like this when all it would take is a doctor to look at his scans and plan some action. I asked is it safe to wait for a chat next week? She said it wouldn't make a difference. I was very angry. The doctor said she couldn't speak to the neurologist because he was not accessible by any other means - only by email. She said she would email and ask him to kindly look over my partners scans for a minute or two to see if he might live or not.
Later this same doctor came and said the neurologist would see Brian the next day if he went to another hospital and felt able to sit up potentially all day in a day room waiting for the doctor to fit him in. I willed Brian to say yes - even though he had headache, light aversion and it hurt him to sit up. He agreed to do this and I strongly encouraged him to because we needed some answers before another week passed by. I was annoyed he had to sit up. But it was better than them doing nothing for a week.
The next day I met him in this day room at another hospital. He was sitting up with his eyes closed. In good humour but clearly not very comfortable. Ironically I could see empty beds where he could lay down - many of them but for some reason he had to sit up. I brought a pillow for him from home. He was in his pyjamas and looked so cute and vulnerable. We held hands, I read trashy magazines to him and I gave him a soft eye mask. Unfortunately it was pink and shaped like a bunny but it was all I could find at short notice.
The neurologist came to see him with the anaesthetist and he said Brian would die if he didn't operate immediately that day. The tumours would kill him. The neurologist said he was 99% the tumours were malignant but couldn't be totally certain until after surgery when the tissue could be tested.
We sat facing each other in chairs processing the news. We rocked from side to side with his hands on his knees and my hands on top of his. Silent but looking into each others eyes like scared rabbits. Tears rolling down my face - he didn't cry. But he did know what they had said and he just accepted it outwardly. I will never truly know what he was thinking inside at that moment. I will only know the terror I felt for him. He later told me he thought he wouldn't wake up and that this was going to be the goodbye. He was asked to put on a gown and surgical stockings in a private room. I helped him put them on. He didn't have any underwear so they gave him some paper pants. This made us laugh strangely - as did trying to put on stockings that wouldn't fit a stick insect on his manly legs. He was calm - a calmness had descended over me unexpectedly. I knew he needed me to be calm for him. He was taken to the theatre on a trolley by a porter. I stayed with him right to the theatre doors. We kissed - we said I love you. I watched him be taken into surgery as far as my eyes could see and then I cried rivers. Dumbfounded, shell shocked but aware that this was really very bad.
They told me it would take five hours and that they would ring me as soon as he was in recovery. I paced the floor at home for the entire five hours. On the dot of five hours I could take no more and contacted the ward for an update. They said there was no news. I paced and cried and waited and waited. The phone eventually started to ring and I picked it up before it rang once. The surgeon told me the surgery had gone well. That they thought they had got all of it and that he was now in recovery. It had taken longer than expected because they wanted to get it all out without damaging healthy tissue as much as possible. He returned to the ward late at night.
I felt some relief - now they had got it out. All of it. Surely that was good news - very good news. I had read and a friend who's partner once had a tumour and survived calmed me and told me he may well survive. But his personality may change in some small or major way and to be prepared for that - sometimes that does happen. Especially with the frontal lobe I am told - though I am no doctor or expert just a frantic internet information gatherer. The next day I was worried he wouldn't remember me - he might forget to love me or he may be different. I was both glad he had got over this hurdle and also desperate to see him. But prepared for him possibly not knowing me or loving me anymore - just in case.
He had a drain and a wound to his head. But he looked better already - he was the full Brian again. Clear mind, able to talk and feel and explain and consider everything. This will humble me and warm me for the rest of my life - he didn't forget me - and he certainly didn't forget our love. Quite the reverse. His love was more intense, he said he could now see what he didn't see as clearly before. We should move in together immediately no matter what it takes and he loves me like never before. I was so relieved and so happy that I still had him, he was looking better and he still loved me as much as I loved him.
Over the next few weeks we waited for scans to see how effective the surgery had been - no news for weeks. No confirmation of the type of tumour or the grade. We weren't anywhere near out of the woods. But to have him back to himself, to be able to love him and kiss and hold his hand and talk to him was the most precious gift in the entire world to me at that moment. Brian was constantly telling me he loved me and constantly saying we need to be together every single day. I couldn't have agreed more but then that was all I ever wanted well before. Steroids and avoidance of a diagnosis continued for weeks and during those weeks his wound developed a staph infection. This also affected his eye. Slow healing and antibiotics.
In those weeks we talked in depth about the meaning of life, the future, love and a million other precious things. Time we wouldn't have had quite possibly had the neurologist waited a week to even look at his scans. He was that close to death. I got him lots of pyjamas and helped him wash every day, I visited daily all day. And couldn't rest when I was not with him. I laid in the hospital bed with him for hours and we cuddled and I read him stories for hours at a time. I took him for walks in the hospital grounds because he was stir crazy. We made plasticine figurines and I gave him pedicures, facials and manicures. We were even more in love than we were before he became ill. And before was intense by most people's standards. One of the days he was pensive - quiet. We walked to the hospital garden and sat together. He was struggling to say something I could tell. Eventually with persuasion - he said to that if this was too much for me I could walk away and he would entirely understand. But if I was going to do that he needed me to do it now and not later. My eyes filled with love, wonder and utter adoration and emotion. I replied - have you any idea how much that will never happen. I love you. Don't you understand I love you and I will never leave your side unless I am forced. He seemed relieved and he said. I cant do this without you. He didn't have to do this without me. I couldn't do this without him. He will never know that this made me love him even more than I already did. A gentleman. A kind and true gentleman. He was clear I was right there and going nowhere. This is how it continued for weeks. Precious time. One evening I was allowed to take him out of hospital for two hours. In between medication and we spent those two hours in normality before we returned hand in hand in time for his medication. I helped him into his pyjamas and left before returning the next days. Memories I will cherish forever.
Whilst in hospital he got an outpatients appointment for the following week. He was an inpatient at the time of the appointment. That same day there was a meeting to discuss how Brian would manage at home - given that he lived alone with his teenage son. The occupational therapist said he needed ideally 24/7 care and that he should not go out alone, ideally never be on his own. There were no suitable services so he would have services designed for the elderly - a microwave meal call and a carbon monoxide detector. Hey that'll help will that carbon monoxide detector - not. He shouldn't drive and shouldn't got back to work.Then we went to see the consultant for the verdict.
The verdict: Terminal, months possibly a year, possibly chemotherapy would buy time, referral to oncologist. Grade 4 - incurable cancerous tumour. Brian stood up rigid and tears filled his eyes. I tried to hold him but he was stiff, staring ahead and in shock. Me too. He was going to die. It was just a matter of when. And there was nothing at all we could do about it. Nothing.
