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....