Brian quickly recovered himself - composed himself. His way of dealing with it I guess. Perhaps in part cognitively unable to process it fully? According to the specialist nurse. I think it was more his personality not to be negative and refuse to surrender. He was brave and determined not to be told he was going to die. He said - no I am going to live. We will have to see who is right - either I am or they are. And that was his stance right to the bitter end.
I on the other hand could not lay down, could not sleep and curled up in the fetal position on the floor most nights in shock, fear and what I can only describe as terror. I cannot protect him and I cannot do anything. But I am so grateful it hasn't happened yet and I hope it doesn't happen at all.
They wanted him to go home - something about normal routines helping the pathways in his brain and making him stronger.
They said they were going to discharge him but chopped and changed their minds back and forth three times. There was some debate about the wound infection. Did it need further surgery? Would tablet antibitotics be sufficient? Had the wound healed enough.
Alongside this - I was about to be torn in half. I lived with my daughter in one house - he lived with his son in another. Both children- adolescents but children who need an adult and a parent. Both houses too small - both children adolescents who would be difficult to uproot and difficult to pacify without their own space. On the other hand - my partner was going to die. I needed to look after him because nobody else was able - and because I love him and I needed to be with him every step - I just needed to do that for him. I love him. And he is going to die. And he is not doing that on his own.
We talked about how to get around this - he was determined to go home to his son. I was determined to go home to my daughter. But we each saw the point of the other. And also we knew he shouldn't be on his own, shouldn't go out alone and damn well shouldn't have to deal with facing death in the face by himself on his own! His family didn't want him to stay with me because it would make it hard for them to visit. I couldn't stay with him because I had a dependant and a home of my own. Nobody would help us or bend or even see the impossible situation we were in I don't think. It was difficult to voice because nobody wants to make their children feel insecure or an obstacle do they? We each loved our children. But my partner was going to die. It was now or never. I was distraught and tortured and felt torn in half.
My mum offered me a lifeline in the end. She said she would move into my house and look after my daughter for a few weeks until we came up with a better solution. A lifeline that I had to cease - never did I think any circumstances would make me do that. My daughter was kind and gracious and to both of them I am grateful. I would have been ripped in half had they not shown us that mercy.
He was finally discharged and we were jubilant - his family had redecorated and perfected his home because he had only just moved in and was in the middle of making it a home. It was blissful to return to some normality, have some privacy. For a few weeks we enjoyed cuddling, watching TV walking the dog, going to the supermarket and loving each other to the full and we got into a lovely cosey appreciative routine. I visited my daughter often and we went out for meals - but all the time anxious about leaving Brian on his own. It didn't feel right to do it. But he had no insight into this at all. But I needed to see my daughter often - I loved them both and they both needed me. Three weeks in and I felt still very much torn in half. If I looked after Brian 24/7 I was abandoning my baby. If I went to my baby I would abandon Brian. I was tortured. In the end I felt I had to compromise somehow. The compromise involved staying at my house two nights a week and staying at his two nights a week and alternate weekends. We were always together but split between the two houses. It was necessary and Brian could see we needed to do something a bit more balanced on either side.
He was remarkably well for several weeks - he planned for the future with me and I would go along with it - sometimes for his benefit and sometimes because I wanted to believe he would defy the doctors. I did allow myself to think he would sometimes but more often I would plan the future with a brick in my heart knowing it wouldn't happen. I would be positive for him and then go in the bathroom or the kitchen biting tears back and saying to myself - he is going to die. He will die. How can we bear it?
He remained in this state of denial or optimism and I wouldn't have wanted him to change that for me. It was just a bit lonely and scarey facing what was going to happen and yet not being able to talk to him about it. I did cry twice in front of him - racking sobs. And he said don't worry I am not going to leave you. I knew nobody wanted to surrender to cancer but sometimes they have no choice.
we would play music sometimes - our love song and other love songs. I recall once we played Wings by Birdie and we just closed our eyes and touched each others hands palms in front of us and let love flow. I think I disguised some big fat hot tears successfully on that occasion. We danced to Endless love and we loved each other thoroughly every single day.
I was running two houses. I was emotionally tortured and trying my best to remain optimistic. Reminding myself constantly that every moment was precious. I couldn't sleep - every now and again my eyes would open wide with fear. I likened it to being on the titatnic knowing it was going to sink at some point. And our lives would be forever shattered - I knew he had the worst part of the deal but I wasn't looking forward to the pain and was very fearful - constantly terrified of how it would happen, when it would happen and how badly painful it was going to be. But optimistic on the outside. We sorted his income, we cooked healthy meals and sorted out medication and endless appointments. He would have his children stay every weekend. I went home every other weekend to spend time with my daughter. The children were not told about his illness - teenagers but left in the dark. A decision that worried me for them and the overall safety on these alternate weekends. What if he became really ill in front of them and there was no adult, no forewarning and no action plan. Wouldn't that be dangerous? Traumatic? Couldn't that be managed in a way that would not traumatise his children forever? Nobody seemed to agree that either the children needed to know the full picture and be prepared and supported to manage the situation or they needed adult supervision apart from Brian. Nobody would listen. Every weekend when I was not there I worried myself sick. What if he wasn't OK? What if something happened on that weekend? Professionals thought it was perfectly OK, the children innocently unaware that he could have a fatal seizure at any moment in the worst case scenario. I was becoming exhausted with worry. I will never find the words to say what it is like to be so in love with someone, to be so utterly in awe of them and yet to know with your head they will soon at some point die - you just don't know how or when. Its indescribable terror. No suitable words.
Brian was on steroids - and he developed a healthy appetite - I joined in and gained loads of weight comfort eating - least of my worries. But I was very anxious as time passed and I knew we were getting into months. The clock was ticking and there was so much risk. Nobody seemed to hear listen or see the risks. So I increased the time I spent at his house the more ill he became. He developed a tremor to his right hand. I didn't know this was very significant until I happened to mention it to the palliative care team. They said he might have a seizure and it could be a serious one at any moment. A warning sign. he was given anti seizure drugs. On the weekends when he was alone with his unaware children. I couldn't fairly just leave them in the dark. I thought they should have warning of the pain they were about to experience losing their father but it wasn't my decision to make. Brian was in denial and adults around didn't seem to think the risks were as real as they were for whatever reason - perhaps because with brain cancer people can seem well days before they die. I had researched this a lot - but I think people thought he had a lot more time.
The brain doesn't have to be slow at shutting down. Nobody wanted to take this on board for whatever reason. Perhaps its too terrible to consider. I can see that. I didn't like to consider it either.
Brian was beautiful and optimistic and that was how he needed to be and how he needed to face this fate. He was the boss in this situation. I just recall feeling very alone with the reality. Brian was in denial, other adults thought I was worrying excessively, professionals wouldn't listen to my concerns about his safety when I wasn't there and his children did not have all the information. It was quite lonely that part. Quite like it wasn't happening at all.
He was his lovely self in so many ways. His legs sometimes felt 'funny' he said, sometimes he would get confused and was no longer able to do things he would normally do with ease like posting an add online or wiring up a computer. He couldn't do it - and this was a shock to him. Frustrating and frightening for him. Sad to watch as well because he was really clever with things far more complex before he became ill. He struggled for words, couldn't remember conversations or plans and would get confused doing tasks sometimes. He tried to top up his gas at the shop by using the chip and pin card machine for example. Heart-breaking frankly but he made it into humour and would just say 'its my head!'
He got easily fatigued and forgot simple things like the name of his favourite takeaway. He once asked the checkout woman at Asda how much his takeaway would be. He became more confused as time went on. Sad so sad. I am amazed that he never once stopped saying I love you - which means a lot to me.
