It's been two long weeks since "that rehab meeting" and things did not progress as we had imagined they would. Mark was indeed transferred to rehab the following day and they commenced work that afternoon. After college I visited him in his new room and spoke with staff. They were very friendly and seemed quite accommodating, so I felt he was in good hands. But that soon changed...
Day One of rehab and Mark was met with a gruelling day. He was lifted out of bed for breakfast at 7.30am, then back to bed, then lifted out again for shower, then back to bed, then lifted out for Rehab treatment, then back to bed, then lifted out for lunch in the dining room, then back to bed, then lifted out for afternoon treatment, then back to bed, then lifted out for dinner in the dining room, then back to bed! Considering he had only been out of bed around four times in 15 days, this new regime nearly killed him - literally. In the middle of the night, after just one full day, his brain began to bleed again and he had an absent seizure and any last bit of strength and movement that he had on his left side all but disappeared. He was now paralysed on the left side of his body. This also included his neck and he was now no longer able to support his head, which now flopped over to whatever side gravity pushed it to. I was contacted the following morning and told he was to be transferred back to the ward. In complete shock and as a reflex action, I contacted palliative care and asked if he could be transferred into the Daw House Hospice until I could make arrangements for him to come home. I had had enough-he was coming home with me!
When he was finally settled in to yet another set of new surroundings, he was quite understandably confused and disorientated. He did not understand why he had been moved out of rehab and was wanting to return for his next session. When doctors asked him what he would like to do, he responded with "I want to be able to get up and move around a bit". The doctor looked at him confused and then at me and responded, "I think we need to aim for something a little more realistic". I disagree. It's Mark's life and if he wants to have a goal of standing up, then that is his choice. No one has the right to say, sorry Mark, but you are going to die, so standing up is not an option!
He has been at the Hospice now for 12 days and he has the best room in the house, with a door that opens to a veranda/garden courtyard area. The windows can be opened and I have made the room as homely as possible. His room has a fridge, so I can load it up with lots of healthy food and drink while enjoying quality time with him. Sebastian has become quite comfortable there too and regularly washes our dishes when we come in with Sunday morning pancakes or evening meals. He knows how to use the video games and loves playing on the veranda or watching TV in Dad's room. It's a very different environment, one that is mostly about caring and respecting family and patients in their last days. I cried every day when I saw how broken he looked. He was so medically well when he left the ward and now he looks so broken, so weak and so very tired. Family where contacted and they came up to say their goodbyes. A difficult time for all, to say the least. The pain and grief overwhelming for everyone, including me. I felt I had to accept that this was it, nothing more I could do to try to save his life - or is there?
I still quietly hope and pray that there is still something I can do. I give him his supplements, nutritionally boost his hospital food and as of Saturday night, I began giving him DCA again. I figured we had nothing to lose, so why not. I had already had his dexamethasone reduced after a CT scan confirmed the brain had indeed bled again but the tumour size had not increased. This gave me the hope that there was still a chance as it had now been four weeks since he had last had DCA and with all the blood, one would have expected his tumour to grow out of control, and yet it had not.
Last night I visited Mark to give him his second dose of DCA as well as his dinner and I was surprised to see how bright and alert he was. He had been sitting in a supportive chair all day and was moving his right arm and leg to give himself some exercise. This was a far cry from the man I had been watching slowly slip away. We had a lovely evening together, thanks to the help of my Mum, who came to my aid in my time of desperate need. She stayed with us over the weekend, to help look after Sebastian so that I could do some much needed study and spend evenings with Mark. I know it's a long-shot, a real long-shot, but I also know that the blood in his brain will take weeks and weeks to go away. So what if many of the symptoms are from the blood and not the tumour? I don't know the answer-nobody does. But I have nothing to lose and absolutely everything to gain, so I dig deeper than ever before and find the strength to move forward. But my own health is being compromised, so I must stay on top of that also. Not that easy to do when I spend every waking minute looking after either Mark or Sebastian. No time for tears or feeling sorry for myself-there is work to be done. I have been given this life for a reason, so I will embrace it and find peace within it, no matter how difficult that may be at times.
I mull over all that has happened. Every symptom, every seizure, every bleed. The bleed (haemorrhage) in his brain could be caused by two possible scenarios. 1) The tumour has grown and the disease has progressed. This is the obvious scenario and the line the medical profession will always take, as this is brain cancer. It does not reverse or go in to remission. 2) The tumour has begun to break down and through this process, it bleeds. I needed to stop giving him the DCA in fear that cells would continue to break down and cause more bleeding. With Mark now stable and a CT scan confirming the tumour is stable and there is additional blood, we were given the "ok" to reduce the dexamethasone dose, which will give his body a chance to heal as this drug tends to inhibit wound healing, but is excellent in reducing inflammation.
I don't know if this is the right thing to do, but it feels right and makes logical sense to me. The dose I am giving is minuscule in comparison to what he was having before, so hopefully it will be a gentle enough approach to not cause any more bleeding. I could just let him go, let him slip away, but every time I decide to do that, something gives me a reason not to. Small signs from a power greater than I. A feeling, deep in the pit of my stomach, a discussion with a friend, information from my text books or lectures, just a deep voice that says, "not yet".
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