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. 

Thursday, January 8, 2015


Everything feels like a bit of a mess, which seems to be a fairly crappy way to start the new year, but it is what it is.

The house is untidy, I'm halfway through about four million things with no motivation to finish any one of them. That means that the materials for the projects are strewn everywhere, and the untidiness is starting to get to even me, which is saying something because messiness usually doesn't bother me. The Mister is going completely bonkers because untidiness really bothers him and the maelstrom we're living in at the moment is the equivalent of fingernails constantly scraping blackboards.

I need to throw out a heap of clothes that I don't wear and are mostly just causing clutter, but there is a part of me that keeps saying "what if you lose weight?" "What if you do more gardening?" "What if you destroy the other blouse that you actually like that is a little bit like this one?".... Of course, there are good answers to all of those questions that do not involve keeping the offending item of clothing, but that tiny voice will not be silenced.

My work project is under control but I'm still being mostly reactive rather than proactive and I need to work on shifting that balance.

Of course, all of this outside stuff is just mirroring my emotions. It feels like I'm standing in the middle of a storm with nothing to hold on to (which is of course a load of crap as I have a brilliant family and heaps of friends, but I've been a bit of a mess for so long that I don't want to keep leaning on them all the time)....

Mum is... well, it's hard to describe, but she's kindof okay and not okay at the same time. Her gastrectomy surgery went quite well. They were not able to save any of her stomach as there were hard bits of used-to-be-cancer and radiation burns all through the stomach, but it all went according to plan and she lost so little blood that she didn't need a transfusion. She was out of ICU after one day and out of hospital three weeks later.

And that's where the problems started. She couldn't eat. Anything more than a small teaspoon of semi-liquid food and she was in pain or vomiting or both. She still had the feeding tube sticking out of her abdomen, and Dad was able to syringe in about 100ml of liquid food per day but he calculated that she was getting about 400 calories per day. Since she started out at about 60kg, there was no way 400 calories per day was going to cut it.  She got very very weak and tired and since she was drinking virtually no water, she got dehydrated as well, so she ended up back in hospital the Friday before Christmas.

Being in hospital is crap at the best of times (note - I know they're necessary, and I love Doctors and Nurses and allied health professionals and the excellent work they do, but hospitals are just not fun places to be as a patient at any time) but being in hospital during the holiday season is even worse. Mum needed some nutrition but the dietitians in the hospital had all knocked off at lunchtime on the Friday and there was nobody available to help until the Monday, so Dad was on his own trying to syringe the tube feed in over the weekend. When someone finally did arrange some proper tube feed and a pump on the Monday, the connector on her feeding tube (inserted at the private hospital) didn't match with the one the public hospital provided on the tube from the feeding pump so they couldn't use it and it was back to square one.

On the Tuesday they took her into surgery and had a look. The join between her oesophagus and jejunum (both the stomach and duodenum having been removed) was 9mm in diameter - and 15mm is the recommended minimum to avoid swallowing problems. They tried to dilate it (make it wider) with a balloon thingy but it didn't really have any impact. She was still unable to eat any reasonable amount of anything.

On Christmas Eve, Dad had a win. He went to the private hospital and convinced them to give him five days worth of tube feed with a connector that would work with Mum's feeding tube.

The Mister, the Boy and I went down to visit on the 28th of December and spent as much time as we could with her in the hospital, but she was tired and sleeping most of the time.

They eventually sent her home on New Year's Eve because they said they couldn't do anything for her. The surgeon who did the original operation hadn't seen her as he had only just returned from Sweden, but the doctors she had seen had no idea how to help her. She did improve at home, probably because we now had a regular source of nutrition for her as Dad had purchased a month's worth of tube feed and had arranged a pump. Also, she was sitting up more and this probably improved the movement of food and saliva down her oesophagus so she was eating slightly more and vomiting a lot less. I think having family around cheered her up a lot too. By the time we left to return home on the 3rd of January, she was able to walk around the backyard a few times each day.

She finally got to see her surgeon yesterday. He thinks they can repeat the dilation and has booked her in for a procedure tomorrow. He is confident of getting a significant improvement so that's something to hang on to. Her oncologist is discussing delaying or cancelling the post-operative chemo because she is so weak it would cause her significant harm. I don't know what the risk is of any cancer cells floating around to grow somewhere else later but I'm hoping that they take that into account when they finally make a go/no-go decision on the post-op chemo.

So we're still on the roller coaster. I'm back at work and I call her every day to see how she is going. At least now I get to talk to her most days, whereas during the chemo and radiation and following surgery she was usually asleep and I talked to Dad. She's still having more bad days than good days but I hope that balance will continue to shift for the better.

But I have to try and put it all aside and get my head in order. I go back to Uni to continue my MBA at the end of February, it's the Boy's last year of primary school and I haven't ordered all his books yet, work keeps happening and we need groceries.

It never stops, does it?