The butterfly used throughout this site is not by accident. The butterfly is the international symbol for palliative care. As I’ve changed the header I’ve wanted to maintain the prominence of the butterfly. It’s become for me I guess a bit of a metaphor. The metamorphosis of a butterfly relates to well, even the whole idea of the Hero’s Journey, relates to that transformation from one thing to another. Yet in between there is the cocoon, or, sacred space ~ Temenos.
“The butterfly counts not months but moments, and has time enough.” Rabindranath Tagore
If you have followed my journal entry posts to this point we’ve been for treatments and the whole nine yards of cancer. In March 2012 they told us he was cancer free. With reservation I might add though, because Tim was too weak to do the last round of Chemo. So spring turns to summer and he’s worse. His birthday, June 29th, we discussed what all this pain and cramps and diarrhea and all of it could mean. It was to be both his last birthday and that Canada Day weekend was to be his last celebration.
On July 26th, sorry, no July 24th, they sat Tim down in Owen Sound Hospital, on his own, and told him his cancer had returned and that there was nothing more they could do.
I wish they could have just waited until I was there with him. He had gone into hospital because he was still losing weight, and the CCAC Dietitian was worried. When he called later that day to tell me, all I can remember is after I was off the phone is collapsing in the hallway in tears. And I raged, and I asked WHY! My thoughts even today, are still very selfish. What was I going to do without him.
I wasn’t able to go up till the next day. I have never driven a car and at times now I could just kick myself. I went up the next day with his Dad and they had the whole palliative care team available to answer our questions.
You know, it wasn’t easy convincing him we could stay at the cottage; he was so scared of the pain. I knew they could do almost as good at home with meds and even pain control because of my experience with Mom. I just knew it would be so much better if we could stay at the cottage for as long as possible. Caring for someone at home who is dying is not easy and Tim knew that from when his own Mom died of Cancer six years before.
However, we went home, again, and we moved our big comfy bed right in the middle of the living room so that the view before his eyes was his Lake. It helped us sometimes forget.
Its one of the reasons I have always disliked hospitals; I don’t understand how someone is expected to heal amidst all the sterile ugliness. With no views to feast your eyes, or beauty of any sort, I just find it all very depressing. They don’t have hospice care in Grey County yet, and even so, Tim had me.
July 27th, 2012
Right now I feel like someone is slowly draining me. I’m a little numb from so so many emotions ~ fear, sadness, anger. I balance between the day to day realities of nurses, symptoms kits, and all the other stuff we’re dealing with to trying to make things somewhat normal — just so we can sometimes maybe forget.
I don’t even know how I feel anymore, other than numb. I tried to focus on healing before; I decided I would be as positive as I could be until it no longer made sense to be. Now, the focus has shifted. I know the reality of now concentrating on quality of life, but still there is nothing wrong with believing in miracles, it could happen. Tim has spoken that way, often lately.
I’m so angry, I don’t even know what I believe anymore. I’m praying that something can ease all this suffering. We really need some good days to strengthen his spirit, to ease the fear and for him to feel pleasure again, before the end.
~~~ July 28, 2012 ~~~
I realize now that regardless of my actual home, I carry my heart home with me. Even though the front porch and riverbank back in Dodge are rarely where I physically am, when I need that reassurance they are always right there etched on my soul. So, I guess in answer to that secret question I’ve always had “if you took everything away I loved and cherished, who would I be?” Well, I’d be just as I always was, me. I know now that knowledge strengthens me. My heart home. My strength. It is my connection to “the mystery”.
~~~ August 3, 2012 ~~~
Up this morn at 6:30AM — opened the door to let Irish out and there is a little plastic bag with Tim’s cloths in it outside the door. Guess he was up last night for a couple of hours with diarrhea. Right now he’s mobile, but this is going to get much more difficult. I had hoped we’d have more time. Maybe we still do. Even a good week or two or three, maybe four….I can only pray & hope. Time to come to terms more before . Time to have another campfire with friends, time for a couple walks in the woods.
** later in the day**
Tim was up this morning for only about an hour. He was super groggy and so I questioned him on what he took last night. He said just another sleeping pill. I’m worried he’s going to OD, accidentally. I’m going to have to take control of his pills. I know Tim doesn’t like ANYONE controlling him, but oh well.
I hope he can have another one of his good days today. His spirits are so low. If not today, then maybe tomorrow. I told him that he just might, considering that has been the pattern – couple crappy days (pun intended) followed by a day or two of good.