The week when the dreaded and anticipated agony was to arrive was not unlike any other week before it really. Brian had gradually started feeling more fatigued, he tried to hide muscle weakness to his legs but did admit he was hiding it when I could see he couldn't stand easily and looked worried once he had managed to stand. As though he couldn't feel his legs. He announced one day that he could no longer walk the dog - something we had got a lot of pleasure from when he was first discharged.
He said he wanted to use a relatives mobility scooter. I was very surprised - Brian was a man with perfect hair, very preened and proud. He was 41, young and handsome and I know he must have been very sure he couldn't walk far to even consider using a mobility scooter. I loved him for being determined and resourceful. I admired him for putting his independence and freedom before his pride. He was still being determined and resourceful but to be perfectly honest it was the saddest statement - I want to use a mobility scooter. A young strong strapping man with muscly arms. The palliative care team said he couldn't drive a mobility scooter any more than a car - I didn't tell him because I didn't want to make him feel imprisoned or for his spirit and determination to be taken away from him. I just avoided the subject as much as I could. He was determined to have it. And I wasn't going to tell him it wasn't possible. Equally I knew if the mobility scooter was there and I wasn't he would go out on it by himself because he was so determined to be independent - and why shouldn't he be? it just wasn't safe. He was more vulnerable than he knew - he was obviously confused. Almost childlike and innocent sometimes - beautiful to me. A more innocent and pure version of the man I already adored. Then there was the hand tremor. And once I think I noticed a bit of urine incontinence - he was embarrassed and hid it from me. I didn't want him to know I knew because I knew he didn't want me to see or know.
On Thursday we went bowling with his kids- and he won. Two strikes. On Friday he was fatigued. On Saturday he was exhausted and we went to the supermarket regardless so determined was he. He couldn't finish shopping because of exhaustion. And I know the first moment it fully registered in his mind he was not going to recover. It was the moment he held onto the trolley with wide eyed fear. Because he couldn't do it. He couldn't stand long enough and he simply couldn't do it. He wasn't going to admit that either - but I knew with my eyes that he could not do it anymore. He was worried about being honest about this in front of his daughter I think - he didn't want to worry her. We left the supermarket.
I made sure he sat down for the rest of the evening, he rested on the sofa and was nodding off but refused to go to bed. He wanted a shower but I didn't want him to stand in case he slipped. Just instinct I think. So I ran him a bubble bath and helped him get in and out. I stayed upstairs for a while so he could have some one to one time with his children. He came to bed after me. He was restless all night. I recall opening my eyes and seeing him shuffling his bare feet with his pyjamas on walking back from the bathroom. He was shuffling not walking smoothly. He got back in bed and was silent. I said Brian are you in pain? And he hesitated before saying reluctantly 'My head hurts'. I got him some painkillers - strong ones that were prescribed just in case. He took those and then he fell into a peaceful sleep. In the morning he was clearly in pain again. I gave him some more painkillers and other medicine. I really had to persuade and encourage him to sit up and take the tablets. It was a huge effort for him. I know he was afraid inside - I don't know how but I just know he was even though he did not say it in words. He took the tablets with water. The moment he tried to swallow, all of the tablets he vomited all over himself, me and the bed without warning. I changed the bedding carefully around him. His children were in the house because it was the weekend - a weekend I wouldn't normally have stayed - only for some reason I felt I should that particular weekend. He stroked my hand. I called the emergency GP, the emergency GP tried to help me help Brian to sit up. Brian could not do it - he tried but he couldn't do it. He really tried. The GP said do you want to monitor him at home or shall we call an ambulance. I said please call an ambulance. Brian held my hand and he stroked it in his usual way - so I know he was to some extent conscious and aware. The ambulance was booked but not as an emergency. Brian couldn't speak to me. He couldn't get out of bed and he couldn't do anything except hold my hand and stroke it. In the end I called 999 because the penny was starting to drop that this was it. It took around two hours for the ambulance to arrive, for another crew to arrive and to work out how to get him downstairs out of the house and into the ambulance. I held his hand in the ambulance. At that point he was not holding my hand anymore - I was holding his. Blue lights blaring - he wasn't holding my hand anymore. He was going. At the hospital I paced up and down in the family waiting room for a few hours waiting for news from the resuscitation department. I had yesterdays clothes on, my hair was not brushed and I may have been covered in vomit. But it wasn't a priority. The doctor said the tumour had progressed markedly and that it was likely Brian would never regain consciousness and that he would soon die. He would never say I love you again, he would never hold my hand or talk to me or be amazing in this life ever again. Swelling of the brain was causing seizures - bad ones. And they were struggling to get control for a while but managed to eventually control the seizures with a syringe driver and strong medication. For three days - the love of my life laid in a hospital bed, breathing deep breaths in and out which seemed to be a huge effort for him. Admitted to hospital on Sunday afternoon - and he passed away with a few final breaths on Tuesday night. An image that will never, ever leave me. I don't think he knew what was happening by the time he got in the ambulance but before that point - I believe he knew. Once in hospital he was sedated, medicated for seizures and given morphine. It was a peaceful end and that was his wish - I am here and alive or I am not and nothing in between. He got his wish and I am aware it could be very different - because it is different for everyone. But the saddest and most painful experience of my life anyway. I love him and I always will and now he has gone. That was our journey (and more besides to be honest). From my perspective as partner and carer I think more than his - because I will never know totally what his experience felt like to him. He wouldn't acknowledge it was happening and so I couldn't ask him. He told me he wasn't afraid once. He told me he was glad he had time to say goodbye to those who he loved. That he believed in an after life. At 41 years of age he left his body and went to heaven. His family and loved ones around him. Leaving four children without a father. All because of cancer. Now it is the hardest part of all - the grief and loss of the most special man I have ever known. Grief for everyone that loved him - and there were many. It has been cathartic to write this down. I don't expect anyone to read my lengthy blog but I do think one day I will read it myself again. Because dealing with this grief is the hardest thing I have ever had to do to date in my life. And I hope I never have to experience anything like it again.
