Lifequake!

Every year, just before my birthday, I have all my annual health checks and general physical maintenance. That way I get it all done and get all my clear results back in time for my birthday and I can celebrate with a clear mind! There is only one little problem with this system, and perhaps you've spotted it already...

This year my annual ultrasound/mammogram came back with a "suspicious" lymph node in my neck. Just in time to make my birthday one of suspense, and not in a good way. So the week after my birthday I was back in hospital having CT scans, bone scans, and when neither of these were conclusive, a biopsy.

The ultrasound-guided biopsy was quite amusing, in its own way. The radiologist and ultrasonographer were murmuring quietly to each other for a while, moving the probe around and murmuring some more. Finally, they decided to share, and the radiologist (that's the doctor with a big needle in his hand) turns to me and says "I don't feel very comfortable about this."

My first thought was "You're not comfortable? You're not the one on the sharp end of the biopsy needle!"

My second thought was "If you're not feeling absolutely 100% tip-top confident you know what you are doing, then I don't want you sticking the needle in either!"

In the end, the radiologist and I agreed that a core biopsy was not going to work. There are too many big, important structures in the neck for either of us to want a needle on a spring being shot in there, even under ultrasound guidance.

So I ended up going for a surgical biopsy of my neck under a general anaesthetic, with the hope that the "suspicious" lymph node would be removed and sent to the lab, and whether it turned out to be cancer or not, it would be out of my neck at least!

I woke up to the surgeon saying, "I hope you aren't disappointed."

Because waking up to hear that the cancer is back, has broken out of the lymph node and is now wrapped inoperably around the arteries in my neck - surely that's the definition of disappointing!

I am now off to the Peter MacCallum Cancer Centre to find out if there are any clinical trials open which might be suitable for me -  it's medical experiments for me! I'm having a PET scan first, which is one of the radioactive ones, so by this time next week I will be a glow-in-the-dark guinea pig. I'll let you know if I develop any superpowers!

Low Energy Parenting: LEP-ing 101

The first thing I learned about parenting three children under five while having treatment for cancer, is that my girls are smarter, fairer and more empathic that I had ever realised. Kudos to them. The main lesson for me was to learn to get out of the way and let them get on with it!

My parenting style previously had been fairly "hands-on". Experiences were discussed and dissected and used as learning tools. I was fairly directive in how this was done. There was space for free play, of course, but I decided when and where this would be.

All that went out the window when I got sick.

Suddenly I was lying on the couch with very little ability to do anything. Even talking too much would make me throw up if I overdid it. (It took me a few goes to figure this out. Anyone who knows me in any capacity knows that I like to talk!)

So I learned to ask questions and let the girls figure it out on their own. This was not an easy lesson for me, but they were wiser and more patient than I thought they could possibly be, and they taught me.

Here's one of my early lessons in letting them find their own solutions: Evie and Zoe were having a fairly loud discussion over who could have which blocks. Evie had most of a tower built and Zoe had most of a ship.

Me: You can have half of the blocks each.
Evie and Zoe: No! Then I can't finish my building!
Me: How about Evie takes all the blue blocks and Zoe has all the orange blocks?
Evie and Zoe: No!
Me: You both need ALL the blocks, is that right? I'm too tired for this. You figure it out. 

I dozed on the couch and let them have their own bargaining session. They worked out that if they took turns (instead of sharing) then they could each have ALL the blocks for part of the time. They were both happy with that - solution found.

This was just the first step for me in realising that if I give them room to work it out among themselves, they often come up with creative solutions that fair and are more acceptable to them both than I could have produced by parental fiat.

We now have a lot of "turn-taking" mechanisms in the house - I set the timer for them quite often at their request to make sure the turns are fair. I would never have thought of this - I was brought up on "sharing" (and this still seems to me to be the logical way to do it). But I've learned not to argue with a five-year old who has made up her mind!

Other solutions they have created for themselves:

Evie decided to get up half an hour earlier in the morning in order to be less rushed.
Zoe puts her "special" birthday pencils away in her room and only draws with them there. Any pencils which are in the living room are fair game for anyone to use.
When unloading the dishwasher, Zoe will do the plates and bowls, Evie does the cutlery.
Whoever got into the bath first has to get out first.

These are all their own solutions to issues which were causing conflict. I have asked questions or pointed out problems which need to be solved, but I have not given them any of these solutions. I also try hard not to "referee" the discussion and dictate which solutions are not acceptable to me. So far, each girl (including Benji) has been very quick to point out when a solution is not fair to her! My main role is to keep them working on it until everyone agrees that the solution is fair to them all.

The unexpected benefit to me is that I am often now included in this "fairness calculation". Evie realised that if I cook dinner for all of them, it would be "fairer" if she put my plate in the dishwasher for me! Zoe has learned that if I am eating dinner she can get up and get her own cup of water from the tap, and get one for Benji too!

So, in summary, my secret for low-energy parenting is to force myself not to say anything! I just keep the "discussion" from getting too heated, but let them find their own way. They can do it - they are teaching me to give them the time and space to do it.

Where am I?

So, it has been five months since I last posted here. I've been doing lots of things that don't involve being a cancer patient!

I rejoined my choir.
I signed up to help teach music to pre-schoolers.
I went back to work.
I applied for a new job.
I've been making audiobooks.*
I've taken up running (the couch to 5K program).
I've signed on as the lead clinician in a new research study we are running.
I've been going to parks and playgrounds.
I worked out how to use Zoe's scooter. (She doesn't like it anymore.)
And I cleaned and reorganised the pantry.

So in the midst of all this I realised that I don't want to write about my diagnosis and treatment story. I just don't want to go back there. I don't want to write about where I was. I want to write about where I am now.

I've learned a lot from the whole process of cancer treatment, and I want to reflect on that, not on the events that got me where I am. I want to move forward and take what I've learned with me, not to dwell in the dark days of chemo, surgery, radiotherapy and being sick all the time.

So this is just a short post to say, not "where have I been?" but "where am I now?"

I plan to resume this blog on a more or less weekly basis, but to focus on moving forward. I will probably at some point in the future be ready to process the rest of the diagnosis/treatment journey but now I'm happy to say that I'm moving on from that place. I'm taking my medications every day and planning to stay well for a long time to come!

*Here's a small sample of what I've been doing - I'm playing Sherlock Holmes in this dramatised reading of the classic short stories: https://librivox.org/his-last-bow-some-reminiscences-of-sherlock-holmes-dramatic-reading-by-sir-arthur-conan-doyle/

Meta-cognition and the chemotherapy that wasn't.

I think meta-cognition just means realising what my subconscious was trying to tell me all along. I've been busy with school holidays and then term starting again, and my car broke down again, and... well, then I realised something else. I started this blog to process my cancer journey, and what I have written so far mirrors what I was doing at this time last year. Which was not much. At this time last year, I had reached a fairly dark place - so the pause in my writing this year reflects my reluctance to write about what was happening then.

Buckle up, you have been warned. This is a cancer story, yes. It is not a nice, happy, wrapped in a pink ribbon "cancer has made me stronger and I wouldn't change a thing" story. No, this is not a story of a "survivor" who has it all together, or even a "warrior" who is fighting the good fight. This is just me, stumbling through the dark. There isn't much that is pink in this story, though there's quite a bit of red and some black.

So, to resume the story, I mustered up enough courage to turn up for my third round of chemotherapy, even knowing how I would feel afterward. I held my arm still and let them put that damn big needle in my vein and pump in the poison. I reminded myself that this was the third out of four rounds of my first chemotherapy protocol, then I would be half way though! After that I had another four rounds of a new kind of chemotherapy - but I would read about that when I got there.

The week after chemo I spent on the couch, tired and sick. Chocolate helped a bit.

(As Victor Hugo would say: let me digress. I had always thought chemotherapy patients lost weight. Nope. I gained 6kg during my course of chemo. The nurse tried to reassure me that it was a steroid side effect. I told her it was chocolate side effect. So I was fat, as well as bald, tired and sick. Do you wonder why I don't want to revisit that time?)

Anyway, third chemo done and dusted - just one more until the half way point and then I would be able to see the light at the end of the tunnel!

Except that this was the moment my cancer decided to throw me a curve ball. My blood tests had always been good - I never had neutropenia and the risk of infection that some cancer patients get. So I viewed it as pretty much routine to have blood tests and a physical examination before each chemo session. I wandered into my oncologist's office, peeked at my test results on the edge of her desk, everything as usual. She examined the lump (I never touched it myself - I had never liked the idea of not taking the cancer out immediately) then she cancelled my chemotherapy.

What? Why? I'm nearly half-way! I don't want to take a break! I've worked it all out, and if I go straight through I'll finish in time to have my surgery just before Christmas and then recover over the summer. I have my life all planned out already!

Except that the best laid plans can be completely trashed by cancer when it decides not to co-operate. My cancer was not responding to the chemotherapy. Not at all. It was actually continuing to grow on the current regimen. I tried not to be disturbed by the idea of my cancer still growing inside my body, living on my blood, stealing my nutrients, and trying to steal my life. I tried not to be creeped-out by my own body and the menace lurking inside me. It worked about as well as you might expect, which was not at all.

My oncologist was urgently changing my treatment plan - bin the current plan, it's not working and is therefore a waste of precious time. New plan, new chemotherapy agent - and a new schedule of six rounds of this one, assuming I can cope with the side effects which are generally known to be worse than the other one, and are possibly permanent.

For the first time I started to wonder about the survival statistics I had been reading and whether I would end up on the "good" side. For me at Stage 3 (large primary, known lymph node involvement) the numbers say that 72% of us will still be alive in five years. That sounded kind of OK to me at first, it's nearly three-quarters, right? Except that's only for Stage 3A. If I turned out at surgery to be Stage 3C the 5 year survival drops to 49% - a coin toss.

I'll put you out of your suspense. I would not know this for another five months, but I was going to get that Stage 3C classification before it was all finished. I was found at surgery to have more extensive lymph node involvement than was evident on the ultrasound.

So that's the news to about October 2013, and now you know why I haven't wanted to write it out. Somehow seeing the numbers in black and white makes it look more inevitable. That probably shows I am better at optimism than mathematics...

Today is World Suicide Prevention Day.

I've just heard that today is World Suicide Prevention Day, so I'm going to belay the moving house shenanigans post for another day and go straight to my second chemo, which is related to today's theme.

The first week after my first chemo was spent lying on a couch and trying to get up enough energy to stand upright. This was a prerequisite to being able to eat anything, as I was not going to risk being sick while lying down. Also, I giving myself daily injections, and I suppose it is part of how bad I was feeling that giving myself injections was the high point of most days.

The second week after chemo I started to have more energy, to be able to eat better and to notice my hair falling out. I had it chopped short, hoping that this would contain the mess and make it easier to transition to no hair at all. At first it was just a few strands, then clumps, then I started to look like some kind of piebald pony with a horrible disease and I decided to get the rest shaved off.

I then discovered there is a big difference between short hair and totally bald. Instantly, I was marked as 'the one with cancer'. Everywhere I went, people would stare, though I suppose I should be glad only one person actually asked me, "What on earth have you done to yourself?!"

The third week was pretty much spent dreading going in for the next cycle of chemo. The first one had been traumatic because I hadn't known what to expect. Now that I knew what I was getting into - it was much worse. Knowingly going to hospital to spend hours lying helplessly on a couch letting them give me poisons which would make me even sicker... ugh! I found it increasingly difficult to imagine successfully completing the planned eight cycles. Days of vomiting, weeks of being unwell repeating for 24 weeks - it stretched out ahead of me, and I became increasingly obsessed with online research about survival statistics.

Yep, I did what I always tell my patients not to do, and started to listen to Dr Google. I wasn't surfing the internet so much as drowning in it. Every story I read, I wondered if this would be me? Every article I skimmed from the medical journals I wondered, will this happen to me? Every possible side effect, every tear-jerking personal memoir, would this be my story? Or this? Or this?

Too much information, too little fact, all spinning through my head at once, until one day I was crossing the bridge above the rail line near the station and I suddenly realised that I could take control of it all. I could make sure the worst never happened and (bonus) I would never have to face chemo again if I just drove my car off that bridge.

The thought seemed wrong somehow, but I couldn't put my finger on what was wrong with it. I pushed it out of my mind, but it kept coming back. I also entertained thoughts of running away to Queensland, or just pretending it away and 'forgetting' about all my appointments. But I knew that would not really work, it would not really end all the stress and sickness.

Besides, a lot of cancer cases end in death. There is no getting around the fact that quite a few people with cancer die of it - cancer has a bad reputation for a reason. I could go through all this agony, sickness and suffering and then die anyway. Surely it would be easier and cleaner to just get it all over with immediately?

Fortunately I have a very perceptive oncologist who did not believe me when I said that I was 'fine'. She told me I needed to see a psychologist. Then she rang me to see if I'd seen a psychologist. Then she asked the psychologist to ring me with an appointment and not to take no for an answer.

The psychologist was a lovely sympathetic lady with whom I did not connect at all. She had lots of excellent logical reasons why suicide was a bad idea, and which completely failed to convince me. (This is no reflection on her skills, we just didn't 'click'.)

I went back to my wonderful GP, who had no reasons at all and no logic but who just let me pour it all out and said "Yeah, this sucks." So at least I knew she was listening to me. She convinced me to take it one day at a time, one hour at a time if necessary, and to put down the internet and step away!

For me, the key was to focus on my life as it is in the here and now. 'Mindfulness' is the psychological term for it, but I could equally call it 'appreciating my blessings' and 'being grateful I'm alive today, regardless of tomorrow'. Whatever the name, it was something I had to learn and practice for myself - there was no magic bullet, or brilliant insight that anyone else could give me.

Cancer patients are expected to feel sick, to feel tired and (to a certain extent) to complain about those things. Talking about feeling suicidal was different, and much more difficult. So don't be surprised if this is the first you have heard of it. Somehow 'coming out' on that subject was harder than telling people about the cancer itself.

But I am eternally glad for the various people who came alongside me and listened, and let me lean on them - some will be reading this blog, most did not know at the time how important their small gestures and kindnesses were. Thank you all.

* * * 

I am now more than a year down the track from that point, but I won't quickly forget how it felt. Staring down into the dark well and wondering if that place is better than here.

Public Service Announcement: Suicide is always something to take seriously. Even people who appear funny, strong and otherwise to have it all together can be overwhelmed - the tragic death of Robin Williams has taught us that. If someone tells you they are thinking of killing themselves, seek help for them and support for yourself. Lifeline does both of these things: 13 11 14.

If it's Tuesday, this must be CT

So I told the various members of the family about the news from Tuesday, either in person or by email. I debated not telling my parents at all until they arrived back from Europe, but decided that it would be worse to come home to find me already bald and in the middle of chemotherapy, so email it was.

I am still not quite clear about how non-medical people receive statistics on this kind of thing. For my grade and size of cancer, the stats say five-year-survival is 70%. Does that sound like a good number, or not?

My MIL (mother in law) thought that meant that three-quarters are still alive in five years - that's good! I couldn't help thinking that meant that three in ten are dead at five years. I'm not sure if the difference is one of perspective, attitude or simply mathematical understanding.

So, I spent the next week being chewed up and spat out by the tornado of testing. I was CT scanned, bone scanned, x-rayed, renal tested and cardiac tested. If I had one of anything, it was tested and imaged to see how well it worked. Then the chemotherapy was designed to test it almost to the limits. I hope whoever did the calculations was careful with their decimal points!

However, one side effect of the testing was that I was radioactive for two days. I had to wean Benji, who was then 15 months old and breastfeeding eight times every day. But on balance, I decided that it was better for her to have 15 months of nutritious milk than another few months of milk contaminated with only-the-pharmacist-knows-what. It felt like the end of an era though, and also the end of my brief career as a breastfeeding counsellor. (I felt that my unspoken thoughts of "you think you've got problems!" was not a helpful attitude to take into the therapeutic space.)

My SIL (sister-in-law) took me to get my hair chopped off, and I told myself I was ready.

I don't think it is possible to be really ready for something like this. On Wednesday morning I took the aprepitant and dexamethasone (to prevent nausea) and within 30 mins of the infusion starting I had my head in a bucket. So they gave me metoclopramide as well. And prochlorperazine. And ondansetron. I just about rattled when I moved and still nothing - staying down, that is!

I was moved from the day chemo centre to the overnight ward and given an infusion of IV fluid to make up for what I was losing. There someone had the bright idea that I was sick because of high levels of anxiety, so I was given a dose of lorazepam. Then I was sedated and still sick. (No, you don't want to imagine that - it was not a happy combination.) Suffice it to say that I am never again eating cold beef and mustard sandwiches.

By the next morning (Thursday) I was well enough to go home and lie on my own couch.

Except for the fact that we were moving house on the Saturday.

With truly appalling timing, our landlord had decided to do some key renovations and had given us legal notice to get out. We debated appealing or fighting the order, but my chemotherapy plan was to have six months of chemotherapy. During that time I would expect to get progressively more tired and sick. So we decided to bite the bullet and move on the first weekend after my first chemotherapy.

Who thought that was a good idea, again?

The move, in retrospect, was hilarious and deserves its own post, so that's some fun for another day!

Thursday: Conclusion

After leaving them to clean up the carnage in the ultrasound suite, Dean and I went back upstairs to the surgeon's room. He said he would get the result from the samples in pathology, and come straight to his office to tell us.

Just after 5pm on that same Thursday, the day which had started a year ago with a normal ward round, the surgeon sat in front of us with a serious face. A "bad news" face.

As he spoke to us, I had a dissociative moment. My brain heard him say the expected words: it's a blocked duct.

And yet at the same time his mouth seemed to be saying a word that started with C and ended with -ancer. Impossible.

I shook my head and asked him to repeat what he had just said. With no change of expression, as if my request were completely reasonable and expected he repeated his sentence and this time both brain and eyes agreed: it's cancer.

He continued to talk to us for a further half hour. I presume he was outlining  the need for staging scans, possible treatment plans, likely scenarios for prognosis. I did not hear any of it. My mind was too busy buzzing with various disconnected thoughts:

He must have picked up someone else's file.

I'm too young to have cancer! 

I don't feel sick. This can't be true.

This is impossible. I'm a doctor, not a patient.

This can't be happening, I just want to go home and forget this ever happened.

We have to move house in three weeks!

Will I have to wean Benji? She's still feeding eight times each day!

Was it something I ate? Was it something I did?

Is this my fault somehow?

Will this also attack my daughters, sister, cousins, niece?

How long will I be off work? How much sick leave do I have?

How can I tell my parents, currently in Europe?

How can I tell anyone?

I've never smoked. I'm a good person! I don't deserve this!

I need to go home and pretend that my life has not just changed completely.

I presume Dean shook the surgeon's hand, thanked him, said all the right things. I didn't say anything.

I don't remember what I did that night.

I don't remember what I did the next day.

I don't remember what I did for the whole weekend.

I'm pretty sure I took the girls to the park and tried not to think about it.

I'm sure I thought about it anyway.

The only clear picture in my mind is pushing Zoe on the swings, as she shrieked and laughed, and wondering how long it would be before I could do this again, if ever.