Category: Cancer (Page 1 of 2)

This is life after cancer. Sitting together in the sun and feeling joyful just because.  Going out for breakfast and catching a glimpse of normal on the horizon. Crying at night after an ordinary day because the exhaustion and the worry and the relief are still there in every moment. Hearing of someone else’s tough times and feeling it in your gut because you know, now, what it’s like.

For Scott, there’s no more surgery, no more treatment, no more cancer. The tumour was lodged at the base of his intestine, that final frontier for waste; the rectum. The doctors showed no mercy.  His rectum was blasted with radiation, poisoned with chemotherapy and then cut out entirely.  In the language of modern cancer treatment, the procedure was a success. No rectum, no tumour, no cancer and no chance of it returning.   If he gets cancer again, for a third time, it will be another cancer altogether, cos this one is not coming back.

On the other hand, that most essential of organs – the rectum – is not coming back either.   For Scott, life without cancer now means life without a rectum. Life without cancer is mostly joy, tinged with the bittersweet. It’s relief and gratitude and appreciation of the little things.

Life without a rectum though, is just crap. We’re told it gets better, with time. For now though, life without this small, yet under-appreciated organ is uncomfortable, inconvenient and undignified. It’s hour after lonely hour on the toilet, wondering if it’s safe to leave. It’s the clenching of teeth and scrunching of eyes and squeezing of pelvic floor through wave after wave of urgency and no rectum to manage the flow.   It’s all day every day near a toilet, without spontaneity or plans or leaving the house. It’s living in the moment because right now it’s good and later it might be completely miserable.

That’s just what I see from the outside. I’ve watched Scott do battle with his body these last few months and I’ve been in awe of his strength and in despair for his suffering.  I’ve floated high on the cloud of euphoria that came with the end of treatment and sunk deep into the realisation that, actually this is just the beginning. A lesser man would have collapsed under the weight, I’m sure of it. But he is weightless, existing in the present moment, and able to let go of the moment that just passed.  He’s like a leaf spinning and battered against the rocks in white water, then moments later floating in the sun in still water. Me? I’m back at the rapids, checking the weather and rearranging the rocks.

Today is a good day. It’s sunny and we’re having an unexpected holiday.  There’s an ensuite with a spa, the kids are doing backflips in the pool and Scott’s family are here taking care of the details. We didn’t think we’d have a holiday this year, but things worked out for us. Sometimes they do. For today, that’s enough.

I guess the first thing to say is that Scott is now cancer free.  It’s a bit of an anti-climax, the way that moment creeps up on you, but it’s still nice to say.  “My husband doesn’t have cancer anymore”.  He had PET scans after chemo and radiation and they found no sign of cancer.  The doctors still recommended surgery to remove his rectum, just in case there were any tiny cells that could trigger a recurrence. It was a tough decision, but we’re so glad he made it.  After Scott’s surgery, they tested samples of what was removed and found microscopic signs of cancer.  It would probably have come back.  Now, there’s every chance that we’ve knocked this one out of the ballpark.

Unbelievably, it’s already 2 months since Scott made it home from hospital. What a blur. It was a horrendous 3 weeks of post-op complications, and even once we got him home, there was a lot of pain that took longer to recover from than he’d hoped. Within a week he was hinting at getting back on the bike but pain held him back for another month at least.  He was in and out of Peter Mac several times for a range of (unpleasantly invasive) checkups, but after a round of antibiotics and more rest things have finally come good. He’s back out on the bike now and we’ve started to have some happy times just enjoying normal life.  The wonderful thing about suffering is the way it helps you appreciate the little things.  I keep getting that ‘I’m so lucky’ feeling in the most simple and ordinary moments.  Scott cooking dinner while I read on the couch.  Both of us picking the kids up from school.  Enjoying a warm afternoon at home with no particular plans.  Our social life has returned after months of putting all the fun stuff on hold.  In the last few weeks we’ve had dinners, lunches, friends dropping by – we even had a little party.  It’s been great.

It was probably a bit too much too soon though. As we count down the last 2 weeks until Scott’s final procedure, we’re starting to feel the strain.  On reflection it might have been better to cautiously dip our toes back into normal life, rather than diving in head first. We’re suddenly exhausted and it’s obvious the emotional strain never really left us; it was just enjoying a brief (though very pleasant) hiatus for a couple of weeks.  Even though we’ve been able to return to normal life in many ways, the underlying anxiety of cancer hasn’t really left me, and Scott is only just starting to process everything he’s been through.  Looking forward, we don’t really know what’s to come from the final stage of Scott’s treatment and this is a big part of what’s still hanging over us; the not knowing.

The final procedure – booked in for 2 weeks from now – is to reverse the ileostomy which diverts waste from Scott’s bowel into a bag (stoma) that sits outside his body, just beside the belly button. The stoma was a temporary measure so that his bowel could heal from the surgery before being put back to use. He hasn’t had any trouble managing it and has been able to get on with close to normal eating and living. His diet has been limited to foods that have no fibre and are very easy to digest, but after a few weeks of trial and error we settled into a good routine.  That said, he’s pretty keen to be rid of it.  Given the choice, I imagine most people would prefer not to carry a bag of poo around under their shirt.

Once his bowel is back in action Scott will find out what life looks like without a rectum.  It’s a big unknown and the experience can vary greatly from person to person.  All I can say is I’d rather have it behind us and know what lies ahead, than spend much more time wondering.  For now, we’re not making any plans post November 28th.  I was about to write complain about how much that frustrates me; how I want to be able to plan Christmas, book a week away in the sun and arrange some fun things to do with the kids over the holidays.  It’s so easy to lose perspective.  I’m really just glad that we have ‘something’ to look forward to.  I know it will be OK, whatever ‘it’ is.

A Quick Recap of Scott’s Post Operative Complications 

For anyone who missed all the action of Scott’s post surgery complications, I’ve clipped a few of my Facebook posts from that dreadful 3 weeks.

Day 2. He’s weak, but he’s post-op and it went really well!

Day 3. Recovery is on track.  Smiles all round.

Day 5.  The first sign that things aren’t going according to plan.

Day 7.  He’s losing weight.  Pretty glad they’re inserting an IV for nutrients.

Day 10. Could things  be turning around?  The worst of the tubes are removed.

Day 12. Still no end in sight.  But a bit of sunshine.

Day 15. Nowhere near as close to home as we thought.

Day 19. Waiting.  Any Day Now, maybe.

Day 20.  The Welcome Home Reception.  Finally!

It’s been 2 weeks since Scott went into Peter Mac for surgery to remove his rectum.  He was calm and in good spirits.  We expected a 4 – 5 hour operation and a 4 – 5 day stay in hospital.  Things haven’t really worked out that way.   The surgery took more than 8 hours, and although it went well, there were complications and he’ll probably be in hospital at least 3 or 4 more days.

When I found out he was still in theatre 7 hours after going in, my brain collapsed.  For the next few hours my imagination went into overdrive, imagining every worst case scenario there was (burst lung, inoperable cancer, actually dead already).  When I finally laid eyes on him I felt the most enormous relief.  At that point it seemed the worst had been overcome.  He had surgery, he survived it.  Win.  And apparently it went very well.  Double Win.

Scott was sitting up and eating roast beef and vegies for dinner by Sunday night.  He’d had a walk around the ward.  He’d showered.  We couldn’t wait to get him home.  And then things went downhill. On Monday it was clear his stomach wasn’t processing food, and his digestion was not functioning properly.

Since then it’s been a waiting game.  The wonderful doctors and nurses at Pater Mac have done what they can to minimise discomfort, maximise health and keep him going until his digestion gets moving again.  Of course, despite best efforts, discomfort has been high and health has been in decline. He’s been in almost constant pain, lost 5kg and suffered through nausea, explosive vomits, dizziness, dehydration and exhaustion, not to mention a whole host of other indignities that no-one should have to endure.

There’s so much more I could say about the detail but I just don’t feel like writing about it.  I could describe all the tubes and lines and drips and feeds going in and out of him, and how they provide him with all the inputs and outputs that keep him alive and pain free.  Fluids and nutrients in; waste out.  The basics of life, and none of it happening naturally.  I could share how I imagine that might feel; how raw, vulnerable, exposed and frightened he must be late at night when he is so utterly dependent on a machine and a nurse for his continued existence.  I won’t though.  He hasn’t even had a chance to explore that for himself yet.  He’s so absolutely focussed on surviving each day that he just can’t go there.  That’s his story.  Maybe I’ll ask him to share it here one day.

My story is a bit all over the place.  I’m alternately tough and fragile, present and absent, coping and collapsing. For the first time in my life I’m NOT 100% capable in a crisis.  I’ve never had a crisis like this I guess.  I’m living a bit of a groundhog day existence.  Days at the hospital; nights keeping normality going.  I took a week off work, then I realised I’d have to take another week.  Now it looks like next week is a write off too.  I suppose theoretically I could work while the kids are at school, but I just can’t see myself ‘delivering client value’ while he lies there alone.

I feel alone. I’m surrounded by friends and family who do so much to help, and there are offers of support every day.  But the reality is that no-one else can be me.  No-one else can sit with him and hold his hand.  No-one else can give Alexa the comfort a Mama can when life is all upside down. No-one else can step in and be me for a few hours, so I have to just keep going.  I guess there are plenty of people out there who have that in their everyday life.  It’s not sustainable for the soul, but this is not forever.  I’ve been feeling the suffering of others very deeply in recent days. It’s like a window has been thrown open.  I can’t imagine if there wasn’t an end in sight for us.  There is gratitude within the suffering.

There is plenty more to come on this journey, but we may be nearing the end of this stage.  Scott has a temporary bag (a stoma) to collect waste for the next 3 months while the surgery wound heals.  As soon as the stoma output thickens, and is less than 1.5 litres a day, he can go home.  It’s happening very slowly.  Some days it’s not happening at all. Yesterday he felt great, had plenty of energy, and output went down.  Today he was weak, in a lot of pain, wanted to sleep all day and output went up.  I cried a fair bit today. I thought he’d be home for Fathers Day but it doesn’t seem likely now.  I just want it to be over.

I chose today to write an update.  If I’d written yesterday, or even tomorrow, it might have been a much more uplifting story.  Who knows what tomorrow will bring, but I’m wishing on a star for a good one.

A few weeks ago we had a conversation about feelings over dinner.  For each feeling, Scott, Alexa and I took turns describing something that makes us feel that way.  My family makes me happy, Skydiving makes Scott excited, seeing Daddy sick makes us all sad and being at home makes Alexa calm.  When we got to Jealous I couldn’t think of anything, and I realised how much has changed for me.  As I explained to Alexa, jealous is when you want something that someone else has got.  I don’t remember the last time I felt jealous. I tried to conjure the feeling by calling to mind other families whose lives are easier than ours right now.  I thought of many families who are not battling with cancer, not juggling shared parenting and not dealing with childhood epilepsy.  I thought of families who earn more money, have ensuite bathrooms (ahhh) and buy more fabulous clothes.  I thought of friends with healthier bodies, who live adventurous lives and go on glamorous holidays.  I drew a jealousy blank.  I can honestly say I don’t want what they have.  OK that’s not entirely true. I do want an en-suite bathroom and I wouldn’t say no to more fabulous clothes.  But I don’t want the lifestyle I’d need to pursue to make those things possible, so I’m not jealous of the lives of the people who have them. Don’t get me wrong, I’m not suggesting hard work or well paid jobs are bad lifestyle choices.  I admire the people I know with high flying careers and am proud of what they’ve achieved by working their butts off.  It’s just that when I tried that, it made me unhappy, so I gave it up.   The bottom line is, even though things are tough for us right now, I don’t want to be living any other kind of life.  There is nothing lacking in my life; no gaping hope that needs to be filled.  Cancer is no walk in the park, but we are the lucky ones.  I know Scott will get better and I’m OK with going through the process to get there.

We are lucky to live in a country with publicly funded cancer treatment.  Chemotherapy, radiation treatment and surgery aren’t much fun, but compared to dying from cancer, they’re not bad.  Having access to this treatment means we can say with some certainty that Scott will be cancer free one day. Until then, we are on this road for better or worse.  Most people would focus on the ‘worse’ part of that statement.  I certainly have. The effects of chemotherapy and radiation are just horrendous.  What’s so good about cancer treatment?   Well, nothing at first glance. It’s been awful. For a few weeks Scott was in excruciating, debilitating pain. The abdominal cramps were up there with labour (the childbirth kind, not the political party) in their intensity.  It came in waves that left him unable to speak or breathe, doubled over in pain.  He couldn’t leave the house; could barely walk; couldn’t sit up without pain.  The radiation burns around his pelvis and anus made going to the toilet a special kind of hell.  And the chemotherapy hung over him like a dark cloud of fatigue and depression.  He’s been living on a cocktail of Codeine, Buscopan, Gastrostop, Paracetamol and various creams, soaks and gels to ease the discomfort.  Looking at it from the outside, it might seem like it’s all ‘worse’ with not much ‘better’ to speak of at all.  For a few weeks that was very much how it felt.  But now there’s a light at the end of the tunnel.

The chemotherapy and radiation stage has ended and Scott has 2 months to recover before surgery in August.  The pain is less every day. About a week ago he dropped the pill count from 30 a day to 20 a day.  He can now make it through the night without a 2am cocktail of pain relief drugs.  This week he’s only taking the occasional panadol.  He has to nap most days as the fatigue still weighs heavily, but he can head out for short walks, drive the car and pick up things at the shops.  Today he’s even doing a few hours of work.  Soon, he’ll be back to work a few days a week – albeit from home for the time being.  Compared to what things were like a month ago, we are in a pretty good place.

Over the next 6 weeks, life will slowly return to normal, which should be wonderful, but actually I’m finding it quite difficult.  As Scott emerges from the haze of chemotherapy and radiation I can feel my own adrenalin drop, and my energy along with it.  The immediate crisis has passed, and it’s weeks until the next one.  Meanwhile life still goes on and we’re back in the waiting game. There’s more time to think and more time to worry.  I’m drawn to distractions like Facebook and movies but I’m trying to stay in the moment and enjoy the time for what it is.  And you know what I’ve realised?  Life is pretty good.  I can’t imagine being anywhere else, in any other time or place. We are in this for better or worse and I don’t think it has to be all ‘worse’.   Yes my husband having cancer is utterly crap, but I can see the good that will emerge from our time on this journey.  I wouldn’t say the worse things outweigh the better right now, but I can already see glimpses of life after cancer, and it really is better than life before. The details of our life may stay the same, but the light within us will shine brighter and illuminate the view.  When Scott climbs out of the cancer treatment hole, I think we’ll discover a more beautiful world, all the clearer for the lens through which we see it.

Here are six things that are already better, not worse than before Scott’s diagnosis with Bowel Cancer.

1. I’ve Let Go

With everything else to manage it’s just been too hard to sustain those old habits that used to feel important.  It’s no secret I have a teensy problem with control.  (I prefer to avoid the word ‘freak’.. but…you know…) Since Scott got sick I’ve had to let go of control and focus on the things that really matter.  I can’t keep the house tidy, source only locally grown produce, minimise meat consumption AND keep my husband’s weight above 70kgs.  I can’t make bento-box school lunches, clean the house every time someone comes over and put on a happy face no matter how tough things are.  I have to let something go.  So what really matters?  My family.  Spending time together.  Taking care of myself.  Eating whatever food is in the house as long as it sustains us for another day.  What doesn’t matter so much?  Well, everything else.

2. I’m Learning To Accept Support

The public Emily is the one that says ‘I got this’ and then goes ahead and proves it.  The private Emily is often utterly exhausted with all that effort and wishes someone would just take care of her.  Cancer has finally opened the door to vulnerability.  There comes a point when you just have to throw your hands in the air and accept support.  I don’t think I would ever have broken that tough girl pattern if life hadn’t chucked cancer my way, twice.  The pressure was building over the last 10 years but I was holding up pretty well, I think.  Managing like a boss through divorce, step-parenting, starting my own business, miscarriage, Scott’s first cancer, a painful pregnancy, early motherhood, working and being a stay at home mum, chronic pain, trouble with kids, Beck’s epilepsy, the emotional and practical complexity of blended families.  I was on it.  I could handle it.  But then BAM Cancer again. Well I’m sorry but no.  Nope.  I’m done.  I’m all out. I need help.  Thank you world for pushing me over the edge.  I really do mean that.

3. Closer Connections with Friends and Family

Something happens when you let yourself be vulnerable.  You knock down the walls and let people in.  Some of the most special people in my life have become even more special.  I’m not the most open person in real life (odd perhaps, for someone who spills her guts on a public blog) but something like cancer knocks your guard down and lets people in.  Old and new friends and family have taken the chance to slip in while the door is open, and I’m so glad of it.

4. I’m Taking Better Care of Myself

Here’s a revelation; I’m going to yoga. Twice a week. In the morning. At 6.15 in the morning!!! I’ve known for years that yoga helps me feel better and reduces the amount of physical pain I have to endure daily.  But I haven’t been going to yoga.  I’ve had time, money and opportunity but the motivation has always escaped me.  I’m not lazy.  I’ve achieved plenty in the last few years, but taking care of myself has not topped my list of accomplishments. Lately I’ve been working 3 times the hours, have had to juggle the household duties alone, take care of the kids’ emotional and practical needs and support my sick husband. And NOW I have time for yoga??  The fact is, there’s no way I could hold it together for everyone if I didn’t go to yoga.  This would be less of a revelation if I didn’t see it for what it is;  I am willing and motivated to take care of myself when someone else needs me to.  Interesting huh?  When life slows down again and everyone is less dependent on me, I hope I can still remember to take care of myself.

5. People Are Making Food For Us.

This is the best bit. People are bringing food to our house on a regular basis.  I know this won’t go on forever, and actually I look forward to the day when I can enjoy cooking and sourcing food for my family again.  Food used to be one of the biggest things in my life, but for now it’s just sustenance; a necessary tool for surviving each day.  I’m sure we could manage – one way or another – without help, but having the help means we don’t have to be pushed to our limits.  For that we are so grateful.  It makes me teary to think how blessed we are.  Whenever I’m hungry I can open the fridge and there’s a frittata or a soup or a tub of cheesymite scrolls.  The kids go to school with Kirsty’s home-made muesli bars and come home to Kate’s minestrone.  We have Scott’s mum’s egg & bacon muffins for breakfast, Danni’s frijoles negros for lunch and my mum’s veggie lasagna for dinner. For weeks when things were really bad we didn’t cook at all, we just defrosted and re-heated.  Now that things are a little brighter we’re cooking more, but if appointments run over or I’m working late, Scott can feed himself and the kids with minimal effort. If I suddenly find myself overwhelmed with it all, I can just abandon plans and open the freezer. It has been such an amazing help. If you know anyone going through hard times, and you want to do something to help, food is the thing.  We are so grateful to our cookers.  You know who you are 🙂

6. I’m Learning About Empathy

I used to think I was quite good at empathy. As I’ve come to appreciate though, mine was a pretty limited empathetic scope.  My empathy was really just friendship; I like you, so I care about your feelings.  You know you’ve learned the lesson of empathy when you feel it for someone you don’t know, don’t understand, don’t particularly care about, or even someone who has done you wrong.  The first time I felt empathy for someone who had hurt me, I cried for about an hour.  That was a turning point.  The day after Scott’s diagnosis I walked out onto the street and wondered if I looked any different to the world. Look, there’s a woman whose husband has cancer; you can tell by the expression on her face, the way she walks, what she chose to wear today, how she grips her daughter’s hand.  But you can’t, can you?  It hit me that you can never know a person’s story. Everyone you see could have something tough going on.  Sometimes it’s a bad day at work.  Sometimes it’s cancer.  I’ve just started working at Carers Victoria on a content project. All day I read about people who are caring for a loved one who is sick, disabled or elderly. I read about their struggles and their strength and the fact that you would never know their story if you saw them in the street. I’ve started seeing real people everywhere I turn.  Not strangers, but real people – human beings – with all their struggles and joys and vulnerabilities.  Just this morning a parent approached me and said she’d heard about Scott’s cancer.  She didn’t want to intrude but she wanted me to know that she understood.  Her son was in remission from cancer and her family had been through this too.  Everyone you see has a story, and most of the time you’ll never know what it is.  You don’t need to know their story though, you just need to know that there is one.  The more I understand empathy, the more alive and connected I feel.

What’s so good about cancer?

Well, why does it have to be all bad?  Everything in life happens for a reason. I truly believe that. I’m not sure why this is happening to Scott, but I don’t see why it couldn’t be happening for a good reason.  This cancer can do good.  What if the end game was more than just Scott getting better.  What if everyone around him could learn and grow from the experience.  The people who know and love Scott have struggled to accept that this could be happening to someone so fit, healthy and strong.  It seems unfair.  Cancer’s a bitch they say.  It’s so random.  I don’t think it has to be that way.  Why can’t it mean something more? If the people around Scott turn his experience into positive things in their own life, then this cancer has been a force for good.  That’s a reason to embrace.  That’s why I share.   Think about it.