17th Dec2010

Making decisions for JD

by Dutchcloggie

Caring for someone can be great fun. Especially when they are as witty and sweet as JD. But although she is a lot better than she used to be, it is still like living with a big child in some ways. Asking her opinion one advice on something is pointless as she will change her answer every time you ask. So I basically have to weigh up my own arguments when making a decision as well as well as think: if JD could decide, what would she do? And that can be a very lonely and difficult thing to do. It frequently keeps me awake at night. Did indo the right thing?

Most serious example is this.

JD used to be treated in the university hospital in Coventry because that is where we used to live when all this started years ago. When JD was so poorly, I thought it made more sense to more her treatment to our local hospital. After all, we had to drive for more than an hour to the appointments just to pick up a bag of chemotherapy. With JD being so I’ll, this seemed counter productive.

The oncologist said that would not be a problem so this has now been done and Jane is seeing the oncologist in Northampton on Monday. But… I remember being told a few years ago that Northampton only pays for a limited number of chemo cycles. In Coventry, there was no limit. So what if this decision I have made leads to JD being denied her chemo in a few months? Did I effectively sign her death warrant by moving her treatment? Is that the price she will have to pay for me giving up on her survival so quickly back in October?

It is so difficult to have to make these massive decisions on my own with nobody to talk things through in detail. I know there are friends and our parents but it is not the same as being able to discuss it with someone who is directly affected by it. Someone who can discuss the pros and cons of these things.

I guess I miss having JD to talk to about the important decisions in our lives…

For now, in will just enjoy the Christmas we get together. I am more hopeful now that it does not have to be her last at all!

07th Dec2010

And so it goes on…

by Dutchcloggie

>It seems that the chemotherapy is really working at the moment. Every day JD is better and doing things she was unable to do before. Functions she lost are coming back. It is amazing to watch. The latest thing was that I sat in the living room and suddenly the door opened. JD had gotten out of bed for her afternoon nap, dressed herself and said: I just came to see where you were. I nearly burst in to tears with joy.

It is hard to avoid telling JD every time she does something she couldn’t do only days ago. But there you have it.

I don’t believe the chemo will cure her. I certainly believe things are going much better now and, like with the previous batch of chemotherapy, the first few months are certainly positive. We have been told in no uncertain terms that the treatment is palliative but that the chemo can still shrink the tumour. It seems to me that is exactly what is happening at the moment. Which means we have been given a lot more time. How much time I don’t know.

The next scan in February will be a really interesting one. I can not wait to se what it will show. What has caused this sudden, massive improvement? The improvements have been as dramatic as the initial deterioration a few months ago.

In a strange way, I somehow feel rather sheepish now about telling people JD was virtually at death’s door a few months ago. She was, according to the nurses, the hospice doctor and the oncology specialist nurse. Only the oncologist himself refused to be drawn on it. Maybe in the end he was right.

Anyway, I am extremely happy with how things are going as JD and I are able to go out and do things together.

Only one problem: she is now aware of her limitations and is refusing to accept them. God for her but she has said she wants to go skiing…