Wednesday, December 2, 2015

Still messy

It's been almost a year since my last post. 
Things have changed, but not necessarily in ways we would have liked. 

I'm now 1/3 of the way through my MBA, the boy is now 12 and will be starting high school next year. I had tendinosis in my wrist earlier in the year and had to wear a wrist splint for a few months. I stopped knitting and crocheting altogether and I'm still mostly avoiding them in case the pain returns. Work is... well, it's mostly the same. Life goes on. But not without drama. 

Mum is in hospital again and the light at the end of the tunnel is incredibly dim. 

Throughout the year she recovered reasonably well, but she always had trouble with eating enough food to put on weight. Lots of foods caused her digestive upset, and with her stomach removed, her body no longer produces the hormones that make you hungry so eating was an annoyance. 

They left the pej (feeding) tube in for a long time and only removed it when she started getting infections at the entry site. She had not put on any weight and was very underweight. 

While her medical crew tried to find foods that would work for her, and she tried to eat more, she kept losing weight. 

Three weeks ago, she had more surgery to repair a hernia, and to put a pej tube back in. Her surgeon had a look around and said he could not find any evidence of any cancer, but said that the current consensus of her medical team is that the radiation she had along with chemo to shrink her tumours damaged her small intestine and caused radiation enteritis (or enteropathy), impacting her ability to absorb nutrients. (I wondered how that could have happened, as the radiation beams were very carefully targetted at her stomach and not her abdomen, but apparently your intestine can "float" around in your abdominal cavity, especially when you're lying down, as she was for the radiation....)

Soon after the surgery, she started vomiting. Couldn't eat anything without bringing it back up, and then was vomiting even though she wasn't eating. A week ago, they did more surgery to look for an intestinal blockage, but couldn't find one. They removed the pej again, thinking that it had caused a kink in her bowel. By this time they were feeding her with TPN via a picc line which was helping, but not really giving her enough energy to do anything but sleep. 

The vomiting didn't resolve. She is weak and in pain and feels awful. Yesterday they did a gastroscopy to look for what was wrong. They didn't find anything. The surgeon thinks there may be an adhesion in her bowel from the earlier surgery, but he's not sure, and he's concerned about doing more surgery as it is just making her weaker and weaker, and my reading indicates that the outcomes of surgery on radiation-affected bowel are not always brilliant. 

Her surgeon said yesterday that he will consult with a lower-bowel specialist, but that he's not certain that there is anything else they can do. He added that they are "very concerned about her condition". 

It all seems so ridiculous. Everyone knows that cancer is bad. You don't even really have to tell people how badly things are going, you just say cancer and everyone gets it. The thing is, as far as anyone can tell, Mum doesn't have cancer anymore. She hasn't had it for 12 months since they cut her stomach out. But she could be dying because of the treatment for her cancer. 

This whole thing is doing my head in. She's 1000km away, and I couldn't do anything even if I were there. I'll be visiting the weekend after next and I'm talking to her or Dad every day on the phone. 

At the moment, she's fighting, and she's getting enough nutrition to survive, but I'm worried that unless the doctors can work out something and fix the problem with her intestines that is causing the vomiting, she will continue to lose weight and will die. I am sad and angry and confused and lonely and scared and numb, and I feel each of them, sometimes on their own, and sometimes all at once. I want to scream and I want to curl up into a ball and for it all to go away. 

I'm trying to be positive - after all, the doctors haven't stopped trying to fix her - but my eyes are holding a small lake of tears that threaten to overflow at any minute. I don't know how to be there for Mum, and for Dad and for my family and friends and also look after myself. I am managing by keeping things day by day and not trying to plan too far ahead. I'm trying not to think too much about things, and keeping busy helps. 

This is my favourite photo of the two of us. It is old and stained and wasn't scanned in particularly well. It's also blown up way beyond its original size (it comes from a photo booth). I've just realised that I look a lot like she did then (although I am now more than ten years older than she was when this photo was taken). We have the same smile. It helps to remember that now, at a time when neither of us is smiling much. 

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