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. 

Untidy

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?

Screaming on the inside

Another day passes.....

Mum is feeling okay - most days now she is only napping for a few hours in the afternoon and she feels well enough to do some gentle exercise and chores around the house. It's good to talk to her in the evenings and find her cheery and upbeat. 

But even this is a reminder that she is only doing this well because she's had a break from the chemo, so this cycle had two weeks of chemo rather than three, and she's now on a lower dose than is specified in the protocol so that they can try and prevent her getting that sick again. Obviously that means that the tumours won't be getting hit as hard as they would have been with the standard dose, but does it mean they are not getting hit enough to do any good?

We know that some tumours don't respond to the chemo at all, and keep on growing. Are Mum's tumours shrinking? Are they growing? We just don't know. 

Dad estimates that Mum has lost about 80-90% of her hair. Her hair loss has slowed almost to a halt now. Is that the amount of hair she would have lost anyway, or does that mean the chemo isn't working anymore?

Today is Mum's last day on the standard pre-operative chemo. They turn the pump off tomorrow and she's got nearly two weeks break before the 5-FU starts again with the radiation on the 15th of September. What if the radiation knocks her around so much they have to stop that too?

I know these what-if's are not helpful, but I'm scared. I think it's reasonably natural, at least for me, to think of the worst. That way, if the worst happens, I'm (at least partly) prepared, and if the worst doesn't happen, I'm pleasantly surprised. That's how I justify it to myself anyway. 

Emotionally, I'm trying very hard not to be a complete wreck. I'm scared and sad and angry. So much of all of them mixed together that the resulting emotion is almost unrecognisable from its origins. Sadness becomes anger and I want to scream but that feels pointless as there's nothing to scream at, and it won't do any good anyway and I stop, and it doesn't make the anger go away, but then, it doesn't go away when I scream at nothing, or imagine screaming at Mum's cancer. After all, as much as we tend to anthropomorphise, cancer is not sentient. It has no malice, it is not evil, it makes no choices. I might as well scream at a tree, or the sun, or the rain. I want to say it will just ignore me, but with no facility to notice me, it can't ignore me. It will just do what it does, and my screaming does nothing. 

Of course, then I feel angry at myself for wanting to scream and I feel angry at not being able to scream and .....

I've tried crying too. It doesn't work either. I'm so powerless that even my emotions feel pointless. 

But the hope is still there. Deep down I still expect that my Mum will still be around for a long time, that she'll get back to some sort of normal, and that one day I'll just be able to ring her up without wondering if she has enough energy to talk today, and that we'll be able to plan a visit for some time in the future without worrying that she will be sick and our visit will be a burden, or worse, that she won't be there for us to visit. 

And that maybe one day I won't be so angry. 

And the daffodils look lovely today

Last Friday was Daffodil Day, the Cancer Council's major national fundraising day. I stumbled onto a banner ad asking for volunteers when I was looking on their site for some information a few weeks ago and thought it was a great opportunity for me to do something - not that any money I helped to raise would be of great assistance to Mum, but future research may prevent someone else's family from going through this. 

I signed up to help at a site near work in the city, and bought myself a yellow blouse to wear as I don't have anything yellow.

Late on Thursday night I decided that just the blouse wasn't enough yellow, so I crocheted myself a rather haphazard granny square-inspired beanie.

I had a great day. The other people on my stall were all Cancer Council staff. I was surprised that there weren't more volunteers but perhaps they were all on other stalls. It was a cold, wet day in Brisbane, and apparently sales were down on previous years, but I was happy to do what I could. 

I'll definitely be there again next year. 

And suddenly, everything changes.

Just over a month ago, my Mum was diagnosed with stomach cancer. This blog has been dormant for a long time, but it has occurred to me that it would be a good place for me to do the general screaming at the universe thing that I feel like I need to do at the moment. Not because I think it will fix anything, but maybe getting some of this stuff out of my head will do me some good. For the next little bit, the crafting content may be fairly incidental, although it will definitely be there, because there's no way I'd ever get through a crisis without craft.... 

Trigger warning: I will warn you that some of this is a bit raw and if cancer and emotions of anger, despair and powerlessness are triggers for you then I'd recommend caution....

If you're still with me, I'll tell you a story. 

The 4th of July was a fairly normal day. The Boy was at his Grandma's for the school holidays, and The Man and I decided to go to the movies after work. 

My Mum had gone in that day for a gastroscopy to see if they could find the reason for an odd test result - iron deficiency with no anaemia. I was a bit concerned when I spoke to Dad as we headed to the movie theatre to find out that he hadn't heard anything about Mum, but she had a late appointment time and I assumed they were probably running late. Dad promised to send me a message when he heard from her. 

While Tom Cruise as Bill Cage approached Emily Blunt's Rita Vrataski on screen, my phone buzzed. The message - "Two masses in stomach. Biopsies taken". Shaking, I shared the message with The Man, and proceeded to attempt to climb past the woman with a large backpack on the end of our totally packed row in the theatre. 

I must have looked a pitiful sight in the cinema lobby, sitting against the wall, alternately crying and stony-faced, while I called and spoke to Mum and Dad. I don't remember too much about that phonecall, except that the Gastroenterologist had found two ulcerated masses with raised margins in Mum's stomach, one 5x7cm, one 3cm in diameter. Dad said that they didn't know what they were, but that the doctor "didn't like the look of them". Mum would have a CT scan on Monday and get biopsy results from the doctor the next Friday. When I asked what they were going to do about the big holiday to Canada and the US that they were due to start at the end of July, Mum said she hoped that everything would be okay and they would still be able to go. 

20 minutes later, and still in shock, I was back in the theatre in time for Rita to make coffee. I understood the rest of the film, probably only because I've read the novella it was based on.....(it's good, by the way. In my opinion, much better than the film, but don't take my word for it, I missed a huge bit in the middle of the film....)

Much like that phonecall, most of the week that followed is a blur. Lots of phonecalls, lots of probably ill-advised google searches, lots of trying to convince myself not to jump to the obvious conclusion. Finally, on Friday, the phone rang. I can't remember Mum's first sentence, but it had the word malignant in it. The next statement stands out in my memory, both as completely bizarre, and at the same time, absolutely like my Mum. "We're going to have to postpone the holiday, which is a bit of a bummer."

From there on, she entered the maelstrom of appointments, blood tests, scans. She saw the surgeon on the following Monday. His take was that he thought there was enough unaffected stomach to be able to save some of it, and that he wanted her to see an oncologist as soon as possible. At his insistence, the oncologist appointment was moved from two weeks hence to that afternoon. Her case was presented to a multi-disciplinary team of health professionals for review. The surgeon scheduled another gastroscopy and laparoscopy so that he could see the tumours for himself, and she was assessed for suitability to be included in the Top Gear trial. By the Friday we knew that there were no cancer cells found in the fluid from washing out the peritoneum, which (on top of the other info we had) meant she was suitable for the trial, and that she had been randomly allocated to the intervention arm of the trial. This meant that before surgery to remove her stomach she would have two 21-day cycles of ECF chemo (epirubicin, cisplatin and 5-Fluororacil (5-FU)) followed by 5 weeks of radiation on 5 days per week with 5-FU through that period, and then after surgery she would have another 3 cycles of ECF. 

She had a portacath fitted on the following Monday, and they started chemo the next day. 

While it was a complete whirlwind, this part was all pretty good. I've heard of people needing to wait weeks after their diagnosis to get appointments with oncologists and surgeons, and here Mum was, under the supervision of a team of smart, caring health professionals, and starting treatment 11 days post-diagnosis. 

Mum was aware of the risks and side-effects, but was really positive about a good outcome. 

... I'm aware here that I'm recounting this in a very matter-of-fact, almost emotionless manner. That's not because it was all matter-of-fact, it was rather completely the opposite. It's actually because my emotions were so extreme, changeable and unpredictable that I just can't remember them now. Once I've got the story down and I'm on to current events, there will be emotions, and lots of them!....

I think, from my point of view as an observer, that chemo seems like it's both better and worse than I expected. I knew it was going to be awful - I'd heard stories about it causing vomiting and tiredness, but it seems like they have better drugs to help with the vomiting now, and apparently some people don't get nauseated at all. Mum has had nausea and vomiting, but not every day. Naively, I suppose, I wasn't expecting the fatigue to be as bad as it has been, and I'd never even heard of some of the other symptoms, like skin problems and mouth sores. She has had neutropaenia as well, but has recovered quite well from it, thankfully.

On Monday, Mum was admitted to hospital with dehydration so extreme that they couldn't detect a pulse or blood pressure. She'll probably be in until tomorrow.

Her doctor thinks she'll have a week's holiday from the chemo. She'll go back onto it next Tuesday as long as the blood test results are okay, but they haven't worked out how much to reduce the dose. And of course the chemo is just going to make her feel sick again, we just don't know how much. But as someone said to me the other day, "When you're on chemo, if you're feeling sick, then your cancer is feeling sick, so you don't really want to be feeling okay". I understand that, but it just seems obscene to me. I hate the idea of Mum feeling so bloody awful, but I hate the idea of what would happen without the treatment.

Seems like the ultimate case of damned if you do....

Honestly, I want to see you be brave...

I love to sing. In some shape or form, I've done it my whole life. In the car, in the shower, in the kitchen. Occasionally in the supermarket. Sometimes in choirs, and a few times, when I was younger, in musicals. 

I sing with a choir now, a beautiful, eclectic, diverse group of lovely, talented, supportive people who have become a second family to me. It's a community choir, with no audition to get in, and I just have to go along and sing.

And somehow that isn't quite enough. I have an urge to sing on my own, or more accurately, to sing in a small group with occasional short solos. This would probably be less of a problem if I could sing well enough to do that, but I can't. 

I think that's more likely to be an "I can't, yet", rather than an "I can't, full stop", but the truth is that I have a serious problem with nerves (I don't generally feel very nervous before I sing, but as soon as I start, the nerves steal more than half of my notes, particularly in my upper register) and there are technical issues as well that would need to be worked on. 

I should go and have lessons, I know that. So far I've resisted that a bit because of the time and financial committment, but also due to a host of other reasons - the last time I had lessons (when I was 15), my teacher and I had wildly different ideas about what types of songs were fun to sing (her: Opera and Lieder, me: Broadway and Pop) and the experience was tedious; how do I find a good teacher?; is this a ridiculous thing to do at my age?; and the real kicker, what if I get in front of a teacher and they listen to me sing and say "Ouch! Your voice is so awful that it's not worth even trying!"

Of course, like most such fears, this last one is completely irrational. The opera-loving teacher I had at 15 didn't cover her ears and send me away. But logic is no match for irrational fear. 

I've put my name down to participate in an audition tonight for the small corporate vocal group comprised of members of the choir I currently sing in.  I don't expect to have any chance of being selected, which is actually fine with me. My main personal goal is to actually get up and sing in front of people and hopefully do it a little bit better than the last time I tried. 

But I am concerned about being a train wreck, like those people they always include on " Idol" audition shows so that people can laugh at them - the ones we're encouraged to look at and think "How did they ever think they would be good enough for us to want to listen to them?"

And it all makes me wonder. When does putting yourself out there and trying to improve at something cross over from brave to stupid and cringeworthy?

And if the "Idol" example says that we laugh at people who show themselves being less than perfect at something in public rather than praising their courage, what does that tell our kids? It feels a hell of a lot like "Don't let anyone see you try anything unless you're good at it.", which is only a stone's throw from "Don't ever try anything in case you're not perfect." And that makes me sad. 

So when I get up and try to sing in front of people tonight, I'm going to keep telling myself how brave I am. And I'm going to try not to worry about whether anyone else agrees with me.

A Little Sister's Dress for a little sister.

I love knitting for babies. It's quick and there are so many gorgeous patterns. I have a number of go-to patterns that I keep coming back to because the patterns are well-written and I've had great results - Jacki Kelly's Felix's Cardigan, annypurls' Peace Baby, Georgie Hallam's Rainbow Dress, and the Ribbon-tied Wool Vest from Erika Knight's Simple Knits for Cherished Babies.

But when I found out my little Sister was pregnant with a second daughter, I wanted to find something new. I settled on Tara Froseth's Little Sister's Dress, which I'd had my eye on for a while.

Pattern: Little Sister's Dress
Yarn: Luxury 4ply by Bendigo Woollen Mills
Colour: Leaf
Started: 26/09/11
Finished: 22/10/11
Buttons: faux mother of pearl plastic buttons in the shape of flowers, from one of those bags of mixed buttons you get at craft stores.

I loved this pattern, although I did find that the yoke seemed to take forever and I had trouble getting the button loops finished neatly.

Other thoughts - this pattern comes out rather large. My gauge was not exact but not that far off, so I expected it to be a little large, but this is a newborn size and the end result was about a 1year old size from other patterns. In fact, it is so large that it was rapidly appropriated by my 20 month old niece (the older sister of the recipient) and fits her quite nicely. It would absolutely swim on the little lady it was intended for.

Oh well, babies grow, and she will be able to wear it eventually. I just wouldn't recommend knitting this pattern without alteration if you want it to fit a newborn baby.