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.
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?
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.
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!
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.
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??
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
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.