Monday, September 1, 2014

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. 

Sunday, August 24, 2014

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....

Thursday, February 13, 2014

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.