Sunday, October 29, 2006

Caregivers and good thoughts........

So many new thought patterns have happened in my mind while on this road with cancer in the family. Many things can, and sometimes do, drive me half insane and others just get a small smile and then I let them go.

One thing that has really struck me is how the person with cancer is very often the 'primary caregiver'. Remember how Steven asked if I was ok during his marrow biopsy? Did you read how Penny cared for all those around her, listen to so many other stories, or just listen to someone with cancer talking about the people around them - you will see.

And then you get the next level of caregiver, the ones that are really close by and keep tabs on medications, appointments, physical and immediate wellbeing and so much more. After that come those, like me (I think) that are one more step removed as in not living in the same house, but still taking care of many aspects of dealing with the disease. Almost daily I see the importance of 'glossing over' some aspects of Steven and the leukemia for the comfort of the person I am talking to. Many times when the question is asked "how is Steven?", the only answer required is a short and definate answer in the positive.... "fine! and a smile" mostly does just perfectly for what that person wants. And I am learning to leave it up to the other person to see if they want more information or not. Steven is doing very well, but as a mom, I sometimes have the need to carry on just a bit longer than the sufficient 'fine'. Thankfully we have a puppy now and she supplies many opportunities for me to get out of an unwelcome conversation - even if it was me that started it! LOL.

Another thing that has been on my brain so much lately is something I hope we never come up against in the fight against this disease. Being the parent of adult child dealing with cancer I am really aware that ultimately any treatment options are fully up to Steven. Fortunately we are on the same page with this. But I know a lady whose son passed away a good few years ago. He had leukemia - a different type - but chose to move out of state to his dad, gave up the fight, stopped looking after himself and died from pneumonia, not leukemia. She had tried to get him to stay, tried to get him to keep up treatments, but as an adult, he made his own decisions. She still cries, she still has so many 'if onlys', so many hurts and angers to deal with. I cannot begin to imagine how she deals with this. I see it in her eyes and her tears when she comes in here and we talk about him and Steven. It still hurts her so badly.

What does a parent go through when a child refuses treatment? What nightmares visit when sleep finally comes? It must be a really frightening place to be to have to sit and watch your child refuse treatment that would really take a weight off your shoulders as well as giving more hope of a long life for a part of your soul. Would it be fair to lay a guilt trip on this 'child'? I think I would have to play every card in the deck to try to get my child to get the treatment. I am not talking about terminal situations - I do have differing thoughts on those situations. I am referring to those that have a really good chance at beating the disease.

Dealing with having a child with cancer is definately a challenge on so many levels, even under the very best of circumstances, which I consider we do have. We are so fortunate and blessed to have this brand of leaukemia to deal with and not many of the others out there.

I have found myself very blue for a good long while now and finally decided very recently that I simply have to stop it. I know that dealing with Penny's death has hit me really, really hard and that I have been really concerned about the outcome of Steven's bone marrow biopsy. My youngest daughter is now is California which is an awful long way away from home and my other daughter got married this weekend. So I have had a full brain of stuff to get worked up about, but now I have to let it go and get on with the positive side of life.

I know that I can go and get a 'happy pill' and that there is nothing wrong with that at all - it might still be the way I go. But, for now, I want to see if I can pull myself out of it without the help of pills. My friends have been fantastic in hanging in there and gently, or not so gently, kicking my rear end, but always there checking on me and reminding me that its ok to worry, but that it's all about balance.

So, I will celebrate being a mother-in-law, gaining three lovely ready-made grandchildren with a fourth still 'cooking', will celebrate the success of my Marine daughter enjoying California and new horizons, will celebrate the time I had with Penny, will celebrate Steven and his health - yes, his health! I will celbrate all the new friends I have made along this road, and will fill up my happiness cup with all the many positives in my life. And there are many.

I was looking a Penny's blog again today and it was incredible to see how positive that lady was all along the way. She ended most of her blog entries with a laugh, a smile, a positive thought - all the way to the end. Quite amazing. Go and see for yourself - visit and to read her story.

Love and Light

1 comment:

Trish said...

Don't forget to dance. :)

Love you