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Pat vs Pancreas.. the battle begins

Bangkok, Thailand

May 5, 2017. It was the first day of a long weekend, my father in law was visiting and we had plans for a weekend filled with food and entertainment. My husband and I had a party to attend and “Poppy” was our slated babysitter – the kids (aged 3 and 7) were delighted. My mum and brother were in town too, a weird collision of overseas holiday planning meant that both my husband and I had parents in town at the same time. So it simply made sense to leave the crowded house and hit an airbnb in town for a change of scenery.

May 5 was a Friday morning, the kids woke early, as they tend to whenever they could potentially sleep in and my father in law, who is, by nature, an early riser was not far behind them. He had landed in Bangkok (where we live) on the previous Wednesday, after a brief break in Phuket. He had complained (in the most non-complaining way known to man) that his feet were puffy and not going down. He also mentioned that he felt short of breath. It was enough for us to be concerned, and so, knowing that my relatives sleep like the dead, we decided that Trent would walk his dad up to the hospital around the corner, while I stayed in our airbnb with the kids and waited for my mum and brother to rise. We tentatively planned to meet for breakfast as soon as they were done at the hospital.

An hour or so later my mum and brother were awake and my father in law was having tests. He arrived at the hospital at around 9am, he was admitted to ICU just after lunch. Diagnosis? Pulmonary Embolism as a result of a Deep Vein Thrombosis. Many tears were shed that day and as I sit her on May 27, I realise that not a day has passed since, when I haven’t cried.

While running the CT scan of my father in law Pat’s lungs, they notice a mass on his pancreas. They were suitably concerned so they ran further blood tests. Blood work showed elevated CA19-9 markers – his were just under 8000 (an average person’s are 0- 37). The doctors told us that there was a 90% chance it was pancreatic cancer… and not to tell Pat. Of course not telling Pat was simply not an option, so we shared the news and all grieved in our own ways.

Pat remained in ICU for three days and spent a total of 8 days in hospital. The doctor’s were great, though often contradicting each other – the mixed messages were infuriating at a time when we needed clarity. As Pat had been on holiday I busied myself being the liaison with the insurance company (who were truly amazing by the way!). At one point I received an equally disturbing yet hope inspiring call from the support team at the insurance company. They said that in a scan the previous year, cysts had been detected and considered to be insignificant enough that no one mentioned them to Pat. The person I spoke to suggested that this may be the same thing that the Thai doctors were seeing on CT scan – ie, they might be entirely benign. Equally, CA19-9 markers can be elevated for a number of non-cancerous reasons, and particularly for non-pancreatic cancer reasons. This was cause for hope, maybe it wouldn’t be as bad as we thought, I mean, maybe it wasn’t even cancer!! I deliberated on it and spoke with my husband and we decided that any hope is better than none, we shared the news with my father in law and we cried in relief that it 100% didn’t mean a pancreatic cancer diagnosis. I’ve realised these past weeks just how powerful and crippling hope can be. It lifts you up but then crushes you in the same swift movement.

Pat was able to fly back to our home country Australia, accompanied by his son/my husband 15 days after his initial admission to ICU. Then the waiting began again.

Gold Coast, Australia

By working with the Thai doctors and insurance company we were able to time the return flight home to Australia so that the ‘boys’ landed on a Sunday afternoon. Trent’s sister had already started the ball rolling in Australia and at 9am on Monday 22 May, they saw a GP for a referral. The GP, who I’m ready to crucify (for reasons that become clear later) was the same GP who had seen the scan a year ago and hadn’t mentioned the pancreatic cysts, note.. did not mention them at all.. not even to say “they’re nothing” or even “let’s keep an eye on them”. The GP was apparently dismissive of the Thai doctors and said he didn’t believe it was cancer, he went so far as to suggest that he had another patient who went to Thailand and returned with a cancer diagnosis which turned out to be false (let’s all compare apples and oranges hey?). So there’s that thing again.. hope. While I was considering this GP to be an A-grade moron, he did give even me a glimmer of hope – I mean, he was a DOCTOR, surely he wouldn’t say anything like that unless he truly believed it?

Haemotologist was later that day to address the DVT and embolism. He was less convinced, in fact, he apparently seemed a bit concerned by the numbers in the blood work and was planning to refer to an oncologist, when he found that Pat already had a referral.

That was Monday, what followed was nothing.. waiting, waiting, until Friday when he saw the oncologist. Even that week was filled with hope, Pat was home, feeling fine and recovering well from his health scare in Thailand, there were no signs of ill health. We’d done the usual investigoogling and found that he didn’t have a single symptom of pancreatic cancer, which again, gave us hope that even if it was cancer, it wouldn’t be that bad.. I mean, surely he’d have to have symptoms….. right??

The diagnosis

Friday morning arrived, and my husband, who had until then felt really optimistic suddenly shifted and ‘knew’ that this wasn’t going to be a good day. The oncologist sounds like he jumped straight to it, to him it was clear, no need for biopsies or further tests, it was (is) pancreatic cancer. Furthermore, it’s not looking like a ‘good’ one. The cancer has decided to take the spleen, lymph nodes, and perhaps the liver, out to dinner. Bloodwork now shows CA19-9 at 19,000.

So that was yesterday. I sit here in Bangkok, my children blissfully sleeping while my husband and his dad are thousands of kilometres away in Australia (hopefully sleeping because it’s 2am there right now).

Our options are this (I say our because I think it’s so important that we all continue to work as a machine, together on this).

Chemo 1- ‘old school’ style

Chemo 2 – more modern, once a week, relatively well tolerated

Chemo 3 – more aggressive, not easy to tolerate, twice weekly

No Chemo

I added the last one, not because it was mentioned by the doctor (it wasn’t), but because I’ve read a LOT about pancreatic cancer in the last few weeks and I know the statistics. I also know my father in law, he’s strong and outwardly healthy at the moment – I wonder what Chemo will do to all that.

The oncologist will call on Monday we think, and update us on when Pat can get into the public system, it’s strange to think that someone who is fighting an aggressive, life threatening cancer may have to wait to start that fight, but I guess that’s the status of cancer these days.

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November 2016, Bangkok, 6 months prior to diagnosis

Emotional wellbeing

The last few days have taught me a lot about mental health and emotional wellbeing. When that side of you is out of whack it can send everything else into a spin. Pat’s continuing to struggle emotionally, the smallest trigger will set him off in tears or anger and we simply cannot predict what those triggers will be. One day it’s the kids not answering a question the first time, the next it’s us arriving home later than anticipated. Trent is struggling to see his dad so unsteady and he reacts in his own way too – snapping at me or the kids and then feeling remorseful afterwards. We’re all coping in our own ways, for me, I’m using every ounce of strength to be a better mother. The stress wears us all thin and with two unsettled kids we don’t have our usual home, toys, books and routine and it’s easy for things to fall apart. I’m focussing on trying to not take things personally, to support the kids and to explain, explain, explain to Finn every step of the way.

Finn is struggling with the instability. He cries when reprimanded for the smallest infraction and is constantly offering insights and suggestions as to how to make Poppy’s life a little better.

Pat is still refusing to leave the house unless absolutely necessary. We’ll try again this week to encourage him to join us for whale watching or the Outback Spectacular, but I’m not optimistic. I’ve not even mentioned having him join us for our family photos this weekend as I’m worried about how he’ll react.

This weekend we took the kids away for a mini-break at mum’s. The Samford Show was on so we thought it was a good opportunity to show the kids what an Aussie country show is like – dagwood dogs, fireworks, carnies and sideshows. Keeping everyone seems best – making memories and keeping distracted.

 

 

Chemo 1-3 was my first visit to the hospital. Kept Pat in high spirits as we laughed our way through his treatment which leads us to this week which is NO CHEMO WEEK – woohoo!! It was shocking to me to see how busy it was – 22 seats, all filled with every shape and size of person, all taking their own toxic cocktail of chemicals in the hope of saving or extending their lives. It was humbling to be reminded that this battle isn’t just ours, it’s touching the lives of many people, every single day.

A final thought.. while waiting for our turn for chemo this week I saw a poem, it’s such a powerful reminder that whilst cancer does many horrible things to those effected, there are many things it cannot do

cancer cannot

The small moments

We’re back on the ‘warm’ Gold Coast again after a quick visit to Sydney to catch up with Trent’s mum. We jammed that trip with every imaginable adventure and hopefully the kids are feeling rejuvenated.

Chemo tomorrow, this time I’m taking the reins while Trent spends a much needed afternoon being Dadda to our kiddos.

Pat’s spirits have been up this afternoon; not quite as high as pre-cancer days, but compared to the last few weeks we’ve had a reasonably good afternoon. He spent an hour or so playing cards with Ninn and I. I feel like this will become part of our routine for the remaining 4 weeks or so. Then later he read to both the kids individually. Dinner was a mild Indian curry and he managed to polish off two kids sized plates – so that’s a considerable improvement over previous weeks.

I’ve now got the kids settled in the bedroom while Pat and Trent await the start of State of Origin #3. I hope for the sake of his household that NSW win tonight.

We have just under 4 weeks left here and we hope to jam them with good times. Trent’s sister and her family will be joining us here later this month, so it will be great to finally have all the grandkids together under the same roof. They are aged 10, 7, 7 and 3 and have never been together at Poppy’s house – so watch this space for mess and excitement! Booked into that week we have professional photos and Christmas in July. Since we live overseas Christmas is always hard for us – sending presents costs a fortune and this year we’re taking our kids to the North Pole, so to save the worry, we’re doing it in July – at Poppy’s house (what could possibly go wrong?!) And of course we have whale watching and the Outback Spectacular planned – let’s see if we can convince Pat to join us!

Tomorrow is the last chemo of the first cycle so I feel we should celebrate somehow (I might ponder that one tonight).

Pat’s struggling with a perpetual sore throat. It began shortly after the first round of chemo and hasn’t left him, the doctor suspects ulcers as a result of the chemo, but it is worrying to see him in pain. He’s also coughing a lot and suffering continued shortness of breath (presumably from the pulmonary embolism). I know this worries him, tonight he mentioned that he’s concerned that it’s cancer in his lungs. I assured him that it wouldn’t be, that the tests would have shown if it was, but it lingers, this constant threat.

More after tomorrow…

Mood swings

It’s blood test and oncologist day again today. Hoping for good news as the last few days have been tough.

The aftermath of chemo 1.1 was surprising. Pat was upbeat and happy, feeling well and eating well. That was Thursday and Friday. Saturday was a difficult day, he was angry and by his own admission took his anger out on the kids. He had no idea why, he just felt angry. At one point while standing in the kitchen I asked him if he was okay, he broke down and cried, his emotions are so unpredictable. The tears were the result of him beating himself up over taking his anger out on the kids. With everything he’s going through he is still so concerned about the kids. I reassured him that they are resilient little beans, but it didn’t change his feelings of guilt and remorse.

Saturday we dragged him to the library. When we first suggested it he said no way, but I had Finn put a little extra pressure on and he came. Then I spent the day wondering if his mood was my fault. It’s difficult to know when to push and when to leave it. I just don’t want him to give up on living while he’s fighting not to die. Saturday was also shopping day, we had to go to Benowa Woolworths because Pat doesn’t want to bump into anyone he knows. It’s strange because he’s so openly talking about it on the phone and to people who drop by, but strangers who he only knows to wave at are a cause of anxiety.

Sunday we had a quiet day at home. Pat and I wandered up to watch the Gold Coast Marathon leaders pack as they journeyed back towards Southport. The rest of the day was spent reading and hanging around the house.

Monday we took the kids to Movieworld. They’ve both been so good lately that it seems unfair to not reward them for their monumental efforts to be compliant in a small shared space. They had a great day and I think it was good for Trent to join us too – just to do something normal.

Yesterday we went to the library again and had a play in the playground. The dark cloud once again lingered over Pat, he’s struggling to shake it. Even this morning I can tell he’s not himself. I made him a beaded bracelet with crystals that suck negative energy away – and whether it works or not is insignificant, I just want to do SOMETHING.

Pat’s just left for the blood test with Trent following shortly. Hopefully they have some good news to lift Pat’s spirits as this darkness can’t be good for anyone and the eggshells are starting to crack. I’m even snapping at the kids over nothing, which isn’t fair to anyone. So I’m taking them out today – time for a play. No devices just mum and kids.. We’ll get through this

Chemo 1.2 tomorrow and then we jet off to Sydney for a few days to see Trent’s mum. I know we need to see her but I worry about leaving Pat while he’s like this, maybe a break from the kids is what he needs.

Chemo 1.1

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Today was chemo day. A day, that considering everything we have been through, we were all dreading. It turned out to be much better than anticipated. Trent and Pat were due at the hospital by 8.30. There was a minor mix up where only one chemo med was ready to go, but once that was sorted they were all set. Pat is on a combination of two drugs which together have improved outcomes when used with metastatic Stage 4 Pancreatic Cancer (than when used in isolation). He’s on Abraxane and Gemcitabine, one after the other. The first is about 200ml and takes about 30 minutes to infuse and the second is a couple of litres and takes the same time!

Today’s nurses were Charlotte, Nikki and Karen. Charlotte was the youngest, bubbly and seemingly the person in charge despite her youthful (early 20s) appearance. Nikki had recently moved from Canberra where she didn’t like living, she had visited Seaworld with her two kids (age 3 & 5) and she didn’t like that either – Trent was wondering what she did like, but apparently she was lovely. Karen, we’re not sure what she was there for. After two failed attempts at inserting the cannula they had to get Nikki to help.. poor Karen. The tea lady came by while Trent was grabbing a coffee and delivered a cuppa and a sandwich to Pat, who was on the phone at the time. He excused himself to his friend on the phone explaining that the “tea lady” had just dropped by, which she rather indignantly tutted at as she explained that she’s not the “tea lady” but the “blue shirt”. I suspect Pat will continue to call her the ‘tea lady’ in weeks to come.

Post chemo, so far so good. They’ve given Pat steroids which should alleviate the worst of the symptoms and the chemo should be through his system in a few weeks, but a perk of the steroids is hunger! Pat’s hungry!! Tonight I risked it and gave him the same size serve as me and he did a good job on it – didn’t quite finish it, but since he’s struggled to eat kid serves lately I’m taking that as a win.

This morning the kids and I spent time cleaning the apartment. Both kids were really cooperative and eager to help. It’s great to see them helping in the little ways they can, they even join me to take the washing out every couple of days.

Pat enjoys reading Better Homes and Gardens magazine so I offered to make him anything he liked from the cooking section. He requested ginger and caramel biscuits and Honey Miso Chicken with Sweet Potato Mash. The kids and I made the biscuits as a team this morning so a treat would be ready and waiting for Poppy when he got home – but of course, he wouldn’t touch them because he thought the kids might want to give them to him (we were out).

As the kids had been so incredible, I decided to take them up to Seaworld for the afternoon. We had such a pleasant day, both kids were delightful and excited by the theme park. We bought annual passes on sale when we arrived in Australia so I thought we should start getting some value from them! When we arrived home both kids asked if they could go again tomorrow!!

The atmosphere in the house is more relaxed today. I think knowing that chemo is behind us for this week is positive, as is knowing we don’t have to go back to the hospital again until next Wednesday. I feel the entire house rides a wave of ups and downs depending on how close we are to the next hospital visit. I do hope that next week will be less tumultuous, fear of the unknown has wrecked havoc on the family, but at least that is behind us.

Memories from today

Pat encourages Cha (who he nicknamed Flossy) to dance , he notes that he thinks she’ll be a dancer when she grows up and shares that Trent used to be a good dancer (to Playschool etc) but was never a good singer. 

and another of his quirky sayings “Where’s my pocket? I forgot it”

 

There’s no doubt

Yesterday it was 51 days since the doctor in Bangkok told us that they believed Pat had pancreatic cancer. Yesterday the doctors here in Australia confirmed the same. So now the battle really begins. Thursday begins the first day of chemo. We’ve been assured that it will be well tolerated. The goal of the chemo is to slow the cancer, at this point there’s no cure. Assuming it is as well tolerated as they say then this is our best bet, it might buy Pat some more time and at least allow us to try to wrap our heads around this horrible disease.

They are starting with Gemcitabine, once a week for three weeks then a week off before the cycle continues. Wednesday will be bloodwork day, Thursday will be chemo day. At least now, we have a semblance of a routine in our lives. They will use Wednesday’s bloodwork to adjust the chemo each week. He will lose his hair and he has been told to avoid the sun – which is perhaps the thing he’s most upset about.

Last night was rough, everyone knew that it was “the” appointment so of course everyone rang to find out how it went. Pat’s feeling guilty for ‘ruining’ our holiday (his words not mine), but I’m just glad we’re able to be here with him during this time. Pat’s weight loss is beginning to show, I’m not sure if it’s because I know that he’s lost weight, or he’s wearing different clothes, but it’s noticeable. He’s eating well though, so at least we have that working to our advantage.

 

“If you pick a guinea pig up by its tail its eyes will fall out” – Pat’s words of wisdom to his grandkids today!!

The never ending wait

It’s Wednesday, we arrived back in Australia early Friday morning in time for Monday’s “big” appointment with the oncologist. I won’t draw it out. The appointment was a fizzer. Turns out the biopsy of the met in the groin showed nothing – no necrotized tissue and no cancer – just nothing. A complete waste of time. So they said we need to go and get a snip of the host cancer – the pancreas. This is what they had hoped to avoid, primarily because Pat’s pulmonary embolisms make it a little more risky than the surgeons would like. So the biopsy by endoscopy was rescheduled for today at 7.30. A LONG wait and the insertion of the cannula, all for naught. They were too busy today and didn’t get around to Pat’s biopsy.. they also didn’t mention it until he’d waited 5 hours total (3 in a bed with a cannula in). So we go back tomorrow. Disappointed doesn’t begin to describe my feelings about the public health system here in Australia. I wish we’d been able to get all this done in Thailand, but alas, it wasn’t to be.

 

Pat’s health continues to be good. He’s struggling with breathing at times but the oncologist attributes that to the embolism, not to the cancer – so that’s good news. Our hope is to get him active, with a daily walk with the kids to a local playground. It’s not much but at least it’s getting him outside in the fresh air and sunshine. Mentally it’s a struggle. Pat is reluctant to go outside, he’s concerned that people “know” and they “look at him with knowing eyes”. He feels this is because he’s lost “so much weight” and “looks pale”. In reality, he’s lost 4kg since May 5, 3kg of that was in the first week in hospital in Thailand, so 1kg isn’t too bad. As an outsider, I am concerned at how little Pat eats. He’s never been a big eater, but he’s particularly light at times now. That being said, there are other days when he eats well, so I guess it depends on the day – just like the rest of us!!

 

I think having us here is good for everyone. Together we face this monster as a team. The kids are great for brightening mood and providing ongoing distraction and comic relief. Cha is Poppy’s girl and I’m so glad they are getting to spend these moments together.

 

On the weekend Poppy showed the kids how to feel the rainbow lorikeets who come to visit his balcony most days. A truly memorable moment.19105954_10154441485902046_5656701965457848446_n

 

Tomorrow we were scheduled to go to Playschool Live, but with the biopsy being delayed, it looks like it might just be me and the kids. As time progresses, I’m hoping to plan more of these memorable moments, I just hope I can get Pat to buy in and join us.

 

Today I cleaned the house, sounds small but it gave me a sense of purpose. It felt good to contribute while Trent and Pat were at the hospital. Of course, Pat called me “a bugger of a kid” which is his favourite way to deal with any act of kindness on my part. Love this. Tears are always close, and I feel that maybe Pat feels or knows more than he’s letting on, but for now, things are seemingly stable and we have room to be hopeful that at the very least we may have a few more months f memory making, but, who knows, maybe we an beat this monster!

 

Before I leave.. an oldie I found on the wall.. 2006, back when we lived in Singapore

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Cracks

Not much to report today. I think as our family approaches the finish line of our time separated we are struggling to hold it together. The kids got new bunk beds delivered today, an event that would normally be cause for celebration but which instead ended with BOTH kids in tears in separate rooms. Kinda sums up our coping strategies right now. At least I’m not the only one who cries inconsolably for no apparent reason!

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Hospital confirmed the biopsy, Friday at 11am. Not great timing as Trent will be two hours into his flight to Singapore to meet us. I wish it could have been done before he left, but at least we’ll have answers when we get back…. TOGETHER.

I’m holding onto small moments of goodness right now, entirely unrelated to the monster ravaging our family’s world. I received this message from a dear friend today and it warmed my heart and gave me some much needed strength to face the day.

Love the blog, love that you have a safe place to write. Love that the kids will be able to read about a sad, but precious time when their superhero mumma did all she could to shield them from monsters that don’t ever give up…….  I’m in awe of you. Your strength, foresight and consideration for others is incredible. Love you Tam x

Yep, they are monsters all right. Ninn and Cha, I’m sorry you’re going through this, I’m sorry I’m not flawless at this time when you need me most. I love you both and my heart is shredded watching you try to process this. Tonight I cried in the car on the way home from dinner. Ninn, ever observant and thoughtful said “Mumma, why are you crying?” I replied saying something about being sad to say goodbye to our friends for the summer and he said “Is it because this is going to be a sad summer for us?” …. Yes bud, I guess it’s because of that. Cha is our eternal optimist, she gently rubbed my hand and said “It’s okay Mumma, the doctors are going to give Poppy special medicine and make him much better”. Thanks baby girl, your sunshine will be much needed in the stormy season ahead.

 

 

Update

More news from yesterday. The cancer has spread further than we initially thought. Starting in the pancreas, it moved to the spleen, through the blood to the liver and kidneys and there are mets in the groin. Lymph nodes are also involved. This is bad news. A devastating blow after our hopes for a lymphoma diagnosis.

Biopsy of the groin met to follow and then we meet to get the results and the action plan in two weeks. A workmate of mine here in Bangkok, likened the last month to a slow drip, such an accurate metaphor. It’s been slow and painful and with each day we hear something new, and often it’s not good news.

I spoke with Ninn last night. He knows, he knows the cancer is in more places than we thought, he knows it’s bad and he knows that we need to make the most of the time we do have. He cried last night, but not as much as before. He made me promise to tell him everything and in simple kid terms I hope to be able to keep that promise for him.

Pat has started having symptoms now, he’s still, thankfully, not in pain, but his failing pancreas is taking its toll and he’s experienced gastrointestinal upsets.

I’m not the only one who processes by writing. Ninn has started a book of his own.. let’s hope it has a happy ending.

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Hope sucks

So an update from the land of cancer. Last week was a pretty good week, all things considered. Pat and Trent met the oncologist and started the process in the public system of working out what life with cancer looks like. That was on Wednesday and Wednesday brought relatively good news. The cancer team thought it was possible that Pat’s cancer may not be a pancreatic carcinoma but instead a lymphoma. Still cancer, but a much better outcome relatively speaking. Lymphoma has a much better survival rate and treatment is far more effective, so considering the rollercoaster we’ve been on for the past month, it was a win.

So Thursday was PET scan day, this meant 3 hours of scanning every last detail of Pat’s body on a cellular level. The weekend brought some much needed relief in the form of friends and frivolity for Trent. Pat enjoyed his coastal life, taking in the international bowls tournaments across the road in preparation for next year’s Commonwealth Games. I asked Trent what the entry fee was and he laughed and said he was pretty sure his dad was standing outside just looking over the fence. That’s Pat to me, it’s the essence of him, he’s into everything, aware of what’s going on and when someone else might need to pay to see, he just looks. Where someone else might be shooed away, he’s welcomed with a smile. People love this man, he cares deeply for those around him, not just his family but his friends and neighbours and in turn, those who meet him care deeply about him. Talking about Pat’s health has visibly shaken my friends here in Bangkok, he’s just that type of guy.

Today is Monday and it’s the day when the cancer team (Team C), meet to discuss cases. On today’s agenda, how to get a piece of this cancer for a closer look. So, after our hopes for Lymphoma and a possible better outcome last week we received a devastating blow this morning. Team C called and said that their plans to do a endoscopic biopsy are canned and they are going to take a piece from the groin. That’s right, the groin. We have new mets in new places. Not good news. Yet through it all Pat’s still strong, and has no symptoms (how is that?!)

Unfortunately my 7 year old son (Ninn) intercepted the message about the cancer having spread, so it’s been a rough morning for him. We’ve all felt so hopeful since last Wednesday’s lymphoma option that I feel we’ve really crashed again. Ninn has been so strong and brave through it all. I’ve been so proud of him, but it’s not without a toll. He misses his Dadda dearly, last night he sobbed until he fell asleep because he just wanted his dad and his nights have been haunted by nightmares. He’s never been a kid to have nightmares so this is new for him. We wake in the morning, more tired than when we go to bed. Cancer is hard, it’s even harder for kids. I’m trying to be there, to help him process it, but how do you process an incurable disease? How do you explain that treatment will attack the good cells too, making his seemingly healthy Poppy feel sick?

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A 7 year old’s take on fighting cancer

Our 3 year old is struggling too, in her own way. I guess it’s hard to be 3. Her Dadda is gone, her Poppy is gone and she’s asking me daily why her Dadda won’t come back. My usually fiery but easy to manage Cha has become inconsolable at some point almost every day this week. It’s unlike her but it seems that’s her way of managing.

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Only 3 but deep in thought, our little Cha Cha has a lot to process right now

In good news, it’s 5 more sleeps until we reunite with “Dadda”. What should be a time of celebration as my son finishes Grade 1, has been tinged with sadness. 5 sleeps. We can do 5 more sleeps right? We have dinner sorted for the next few nights courtesy of a workmate. The kindness of others will be a powerful memory to keep throughout this. The kids loved the freshly baked cookies – no need for moderation when you’re dealing with cancer folks, we ate all those cookies in one sitting!

 

 

Telling everybody

So you have the diagnosis, what comes next? For us it is time. Time to process, to think, to plan, to deny and to accept. The official diagnosis came only days ago for us, so we are all in a state of flux as we each move through these stages differently. We don’t even know the timelines yet, as I said it’s all new. Tomorrow’s second oncologist appointment may shed further light on things and will no doubt lead to more grieving and processing for all of us. With the official diagnosis we felt it was important to share the news. I couldn’t face telling our closest friends in Bangkok, so I took the chicken’s way out and sent an email with the basics and left it at that. With that done it was time to tell the kids. We received the diagnosis on Friday, I was at work so I at least had time to process the news and compose myself before I faced the little ones.

 

My kids have recently had birthdays – having turned 7 and 3. My son (who is 7) is a quiet, reserved and thoughtful kid who feels and thinks deeply. I call him my old soul. He witnessed his Poppy’s ill health in Bangkok, saw him in hospital and knew that things were not great. After much deliberation I decided to forewarn him that Poppy “might” have cancer. He took that news as well as could be expected. It was hard on him, he cried, but he was okay. On Friday night I avoided for as long as I could. It was right before bed that I chose to tell him, hoping that he would have a long sleep to heal some of the hurt. I can’t begin to explain the pain he showed when I told him the news. I kept it as simple as I could “Poppy went to the doctor today, he has cancer, it’s bad, the doctors will try some medicine, but the medicine probably won’t stop the cancer. The medicine, called Chemo, would probably make Poppy sick as it attacks the cancer and the good bits of his body at the same time”.

He knew. He might only be 7, but he’s not unfamiliar with cancer. A dear friend of mine passed away when Finn was an infant, she was 29, a mother of a 4 month old, and was taken by leukaemia less than 2 weeks after her diagnosis. One of his friends at school only has a dad, because her mum died of breast cancer. It’s a dark cloud that he knows about, but has never experienced first hand until now.

So Friday night I held him, he wept until I thought he couldn’t possibly shed another tear and then the next wave enveloped him. His sister, who is 3, cried too, though more because we were crying, than because she understood. She knows Poppy is sick and that he might die. It’s a horrible word to say to your kids, but from everything I’ve read it seems better to give kids the information in concrete terms rather than metaphors.

But, in all of this, the kids have been a shining light. They bounce back so quickly. Friday night was tough, but sleep did heal and Saturday was mostly a good day. There were a few tears, but more to do with other things than with Poppy’s condition directly.

I had a big cry last night and my son joined me. I was reading “A Monster Calls” by Patrick Ness, having heard it’s a good story for older kids to read about the death of a loved one. It was beautiful, a powerful story and as raw as things are now, I’m glad I read it. Spoiler ahead but the message is that it’s okay to want someone’s pain to end and also to want them to not go. I was reading it hoping it might be a good story to share with my son, and when I finished it he asked if he could read it too. He’s 7, it’s aimed at an older audience, but the concepts are clear and it’s well within his reading range, so I think we’ll read it together.

I’ve also done some research about books that help kids address death. In our school library there are three that I want to grab and check out, they are 1. Michael Rosen’s Sad Book, 2. Dr Seuss’ My Many Coloured Days and 3. Oliver Jeffers’ The Heart and the Bottle. I’ll write more after I’ve read them with the kids.

As hard as it was I feel good that we’ve told the kids and we’ve been honest. Death is hard to talk about and to face, and even harder when we are trying to protect our children from the pain of death. But by talking in metaphors we don’t explain anything and just confuse them more. I don’t know if this will help my kids in the long run, but at least I know they aren’t being left out of this experience in our lives.