22 - Love, Loss, and the Plant: A Family’s Pancreatic Cancer Journey with Christie Ahfa.

When Christie's husband, Lei, was diagnosed with pancreatic cancer, life as they knew it turned upside down. With two young boys, a global plandemic unfolding, and a devastating diagnosis, their family was thrust into a whirlwind of hospitals, misdiagnoses, and impossible decisions.

In this conversation, Christie shares openly about:

• The early symptoms that were missed and the persistence it took to finally get answers.
• The harsh realities of cancer care, from mis-prescribed chemo to navigating genetic testing.
• How faith and community anchored them through moments of crisis.
• The turning point when the plant became part of Lei’s care - improving appetite, easing pain, and helping him regain quality of life.
• What it meant to provide palliative care at home, and bringing Lei’s body home after his passing.
• The lessons she’s carried forward about advocacy, honesty with children, and finding strength you don’t know you have.
• Lei’s message for anyone walking through illness: Don’t stop living.

This is a tender, powerful episode about love, resilience, and redefining what care can look like. Whether you’re navigating illness, supporting a loved one, or simply seeking perspective, Christy’s story will leave you with both hope and grounding.

You can find Christie @christie_ahfa

✨ Resources & Mentions:

• Genomics genetic testing for chemo/medicine compatibility https://www.genomicdiagnostics.com.au/tests/pharmacogenomics#order
• Information on pancreatic cancer: PanKind Foundation – The Australian Pancreatic Cancer Foundation.https://pankind.org.au

Transcript

Hi, Christy. Thank you so much for being with me here today on the Counter Curious podcast. Thank you for having me.

Now, I thought I'd go back to when actually when we first met, which was how many years ago now? I was trying to think about that yesterday. I'm like, how many years? Five years ago? Yeah. So five years ago we met over the plant and that was a time where your husband had just been diagnosed with pancreatic cancer. So I thought you could take us through like what your life looked like back then.

Yeah, I, gosh, seems like a lifetime ago now. But, yeah, so Leigh had been diagnosed with pancreatic cancer quite young and our life completely flipped. We had two young boys at the time, I think they were two and four, and we were both working full time and then, like I said, flipped to not working, being in cancer care.

um he how did that happen oh sorry just tell me what like what symptoms was he showing like just so that he can bring the listeners along with us so that they may um may understand a bit more so he was quite active and super fit so he had a sore back for a while and um that was sort of like oh you know you've probably done it at work or whatever i was seeing a physio um he had a scan on his back actually like a ct um and nothing came up

that was probably and then that was at like a six month mark and then three months later he started having stomach problems um and actually got to the point of um the doctor saying oh i think you've got ankylizing spondylitis which is like an inflammation in your back um and we were doing treatment for that but then they were like oh your tummy is just um

reacting to all of the anti-inflammatories you're taking so we need to manage that and we actually went to the hospital i remember one weekend and i was like enough like he can't eat he can't he's in so much pain he can't sleep all they did was like you need to wait for the specialist like you're on the waiting list we can give you some pain relief and then sent us home so they gave him endone and we went home as soon as that wore off like

a couple of them because the first one didn't work it was in a lot of pain and we know why now like your pancreas is attached to a lot of nerve and whatever um and we were back there four hours later and he was in excruciating pain and they had to knock him out with whatever and then weren't running tests weren't running scans they're like there's nothing we can really do and i remember this nurse um this older nurse saying to me wow you're making a lot of fuss fine i'll give him a another scan on his front and then you can go home

And I was just at this point, you know, I was just like, whatever. I just sorted out. And the registrar had come over and said, you know, we've looked at your scan. We're just waiting for the radiologist to ring, but everything looks fine. And as he said that, got a phone call, his face changed, everything just dropped. And he was like, okay. And we were literally packing up our phone charges and stuff like we'd had enough. It had been 24 hours in emergency.

And his pain was being managed because we got on top of the breakthrough and they just said, sorry, you're being admitted. There's a large mass in your pancreas. We need to figure out what this means. And that's literally. um the week that COVID was hitting so at the same time the hospitals were shutting down visitors couldn't come in and it was just literally the start of a bit of a nightmare to be honest well I think it's a nightmare you know this isn't the first time you know I've heard this story where you've got to push back on the healthcare system too when you've got someone who you love who is in a lot of pain and you know that and can recognize that yeah and it's not even a disrespect things to doctors like obviously they know

what they're doing, how to explore for things. But you know your person and your body better than anybody. And I think that's a missing link. That came up a lot in our journey anyway. You know yourselves better than anybody. Anybody. Yeah. Absolutely anybody. And, you know, going back to then, how did you both respond to that diagnosis? Like take us back to that time where they've said that.

It's a funny one. Like, you know, Leigh was from Samoa. He grew up in the islands and so emotional coming out with how you feel. It was really hard for him. He shut down and just processed. I think he was in shock. So it was really hard to gauge in the beginning.

how he was doing until he sort of came out of that and was talking about it more i obviously am the opposite i'm super emotional um and very comfortable expressing that so i but in that time i just remember trying my best to hold it together and just looking at him because i was like you're the strongest person i know and you constantly hold it together and seeing him like that was super hard

So I think once the initial shock wore off, which didn't wear off for a while, to be honest, because, you know, within those five next days, he had a port put in, was confirmed it was cancer and started treatment and then was on life support because his first round of chemo. Oh, that's right. That's right. I'd forgotten about that. It was just like one thing after the other. And it took a few months after that, after coming off life support, learning to walk again.

getting to eat again um and getting home and then we're back to square one it's like do we go down this path like what do we do we were looking at mexico we were looking at yeah you know i found yeah it's kate's time page you know it's just like what are we doing and that's when i think as well his emotions started coming out and he'd never been so emotional um and and forthcoming with his feelings which

very healing for him in itself and for me in our relationship. But, yeah, it took a while. Yeah, and you both have a really, you know, strong faith which, you know, is part of that which I remember and it was lovely to hear. And, yeah, so what point then did you start making some changes? I know, you know, the plant was part of it.

you know your your care team or your care with lay so talk us through talk us through that and yeah uh you know what helped at the time so i think a big part of us going and finding connecting with you and finding the plant and all of that was when we were looking at making these decisions you know the hospital can't

always give you answers on your team they're doing the best with what they know and they don't know why they react to these drugs and we didn't know whether it was safe to try another one and so we looked at so many different options like i said mexico natural therapies chemo again um we ended up getting genetic testing done um and found that

Yeah, one of the key drugs in 5-FU chemo, Leigh had zero capacity to process in his body, which is why it nearly killed him. So I guess it was a very careful decision to obviously go back down that path. And we kind of felt more confident having that information and what his body can respond to finding another drug. Yeah, I just wrote a note to put that in the show notes because I didn't even know that you could do this. So you can actually talk us through what you do.

Yeah, so it was just a passing comment. So because all of his organs shut down and then his heart failed, we were on the cardiology ward and then the oncologist was saying it was his heart that was the problem in the beginning and the cardiologists were like, no, it was the drugs that affected his heart and caused cardiomyopathy. So both of them were like, how do we do this? How do we figure it out? Because we were both like, no one is touching him until we figure out what's going on.

and someone made one of the registers made a passing comment it's like oh you could do this testing but it's super expensive and then I was like what did you say you know like testing what they're like me then I was like yeah and she's like it's not covered and I was like no and um it was going to take four weeks and I was like I don't care we're doing whatever it takes this is life or death for us at this point pancreatic cancer advanced locally advanced he couldn't have surgery there's no other options um the first line of treatment that was meant to help him

get to potentially surgery is now off the card so we literally had nothing and we went ahead and did it so we did um it's through saliva you have to answer a million one questions so contacting family in new zealand and somewhere and finding out everyone's history to get the answers sent it off to california through collagenomics and they came back four weeks later with everything about him and that really helped us make informed decisions on

treatments where to go and found another drug that wasn't meant to help as much it's generally used or it's two drug combination for palliative care and older people with pancreatic cancer to buy them time and lay's body responded so well to it they did hit him quite hard and it was getting to a point where it was working really well he was so sick kyla and that was when i'd reached out to you and i was like

I don't know what to do. He's missing chemo. We have no other options. He's not quite there for surgery. They want to keep pushing him, but he cannot and I can't. Quality of life was out the window and I just remember having nothing left and I was just like, I need to reach out to this lady. You had come up on a few different cancer patients and pages on Instagram and, yeah, I reached out to you and you, oh, my gosh, you were like our shining angel at the time and I just remember being so emotional.

Me too, babe. I just remember being so emotional meeting you and you just, you're so loving and you gave us some really good advice and just a listening ear, to be honest. And so we started using the plant straight away and I noticed a night and day difference in lay. His down days from chemo were.

Not as bad. He could eat. He gained weight. Yeah, that's I remember. I remember when you said to me that. Our team were like, what are you doing? He's gaining weight. What are you doing? He got through a couple more months of chemo to be able to get to surgery. And there was like, honestly, nothing left of a mass. It was just a shadow on his pancreas that I think we had done a lot of things. And we like, I know you say on your podcast, like people's doses are differently.

I'm so glad that Lane could take a lot because he tolerated it so well. He tolerated it so well, yeah. Oh, my gosh. So we just ramped it up and ramped it up. And I think all of that got him to a really good place and quality of life. That was the main thing. No matter what happened, we weren't in control of that. But just seeing him happy and we used to walk five kilometres every day, even on chemo days, and he was happy. Like I couldn't have asked.

for more at the time so that's from going to rock bottom to finding that was just incredible so yeah yeah so um oh trying to find my next my next question so with um with his treatment then because you know sadly with cancer it's it in particular with pancreatic cancer it's it's a horrible cruel bloody you know

painful cancer to have yeah so painful seeing yeah and seeing a loved one in pain yeah so how did you how did you go like at the time you're raising you know you're raising your two boys and you know you've got your husband's really unwell you you weren't working you were caring for lay and where where did that where did your journey go to you know at that point yeah

Yeah, it was hard and honestly a lot of back then I'm really glad that I started taking photos and videos of anything and everything because there are so many things I look back on and it's like I don't remember that. I don't remember my kids' growth or development. I was there and I know I was doing a great job but Noah started prep. You were doing a great job. And I'm so glad I documented it because I miss so much.

But in saying that, we had that time with Leigh. So I wasn't in a great space, obviously. It was the hardest time I probably will ever go through. And, you know, I had a really great support team in terms of, like, my Leigh's care team was so amazing and always checked in with the boys and us and just included us in everything, which was amazing, especially considering the times of COVID. They were just...

involved us in everything yeah that's right there's the layer another layer yeah and i know that wasn't the case for a lot of families and i was just so thankful for that but i i struggled um i don't know how i got through it and um i definitely started using the plant pretty much the same time as lay i'd had a few reactions to um antidepressants that the gp had prescribed me and i just feel like my body doesn't work well

with drugs um even normal painkillers i have had reactions to last year had my wisdom teeth out couldn't take it it just affected me so you know i had to find a way to manage and i know it helped my sleep it didn't take away my feelings but it helped me cope um and i'm glad for that i'm okay to feel what i'm feeling i want to i think it helps you process without blocking what's naturally you're going through and experiencing but it definitely helped me cope um

I was leaning on alcohol for a while, not a lot, but self-medicating obviously. You know, understandable in the situation and you've got to try things. But it didn't help my anxiety and I know that taking the plaque did. So taking it sublingually under your tongue. Yeah, yep. That helped my anxiety. It gave me the calm I needed to do to get through really messed up time. A very, very tough time. And, you know, for me being...

a bit older too. Like I just, you know, I remember thinking like how strong you were during that time for a young woman. And this is how old were you when this was going on? Honestly, I can't remember. I just turned 34. So this is five years ago. Yeah, you were 20s. I was like, I'm pretty sure you were 20s, but I didn't want to say. Yeah, so you're a young woman in her 20s raising two beautiful boys and, you know, having to go through this.

It's, you know, it was striking watching you and to support your husband and your children in the way that you did. Absolutely beautiful, you know, and I learnt a lot, you know, personally through that time. And I think that, well, I saw this, but personally do you feel like that there were moments of, you know, absolutely unexpected strength when? Yeah, I think.

One thing that still surprises me, and it's such like an out-of-body experience, to be honest, is when we did the home palliative care at the end. COVID, again, don't want to keep bringing it up, but it played a huge part. But it's important because we forget. I didn't have a lot of family around at the time. Like they were around but far away and not always. I needed help. Looking back, again.

I don't know how I did it. I trained in palliative care to do home palliative care. We had team come out once every 24 hours to drop off medication and make sure I was administering properly and checking our stock levels. So what did this mean for you? Talk it through because even I am unaware of what this means for a lay person to go, you know, to do this. So once he transitioned home pretty quickly, he couldn't walk around. He was not here a lot.

He was in the bed a lot. I would help him to the toilet, looking forward. But every two hours on pain relief, we were still doing sublingual plant. Yeah, he had a driver, which is like a syringe thing with morphine and so many drugs, to be honest, a cocktail of drugs.

And then he had ports in his leg for breakthrough pain that I would administer through, but it was every two hours. So he, in the time that, you know, I kind of had this cycle going, so I would put the boys to bed, draw up all of his medications for the next 12 hours. Sometimes he'd run out beforehand and every two hours it would be heat packs, massage for pain, especially around his back.

top him up with breakthrough, make sure that all of his pumps and everything were working and whatever, writing everything down and logging it and then try and get half an hour of sleep or sometimes he would need more before that time or the kids would wake up and then trying to get them to school, got to a point where they couldn't because I couldn't lay alone in the house. So they were home now and that was my life for a few weeks.

looking at that time i don't know how i did it the the mental load of like the drugs let alone dealing with seeing lay transition you're also great you're also grieving like going and it was our son's sixth birthday my eldest you know that same week and i remember calling palliative care and being like i need a cake i can't leave like can you please just come

And they did. They dropped the medication off when they said, we can't administer anything while you're gone. So I quickly, just that in itself, I'm glad I documented a lot because I don't remember it and I don't know how I did it. Yeah. Because you were in action, you know, action mode, just getting things done. But the one I loved the most. So, you know, love literally will pull you through. I loved that. Yeah. Yeah. Yeah.

And that's one thing that, you know, I remember about you guys, like especially when I first met you, like I could feel it. I could feel it. And it was beautiful, absolutely beautiful. Thank you. What do you wish more people knew about like navigating terminal illness and grief as a young family?

I don't really know how to answer that, to be honest. I think the best, I mean, I've never lost anybody until they passed. He was the first death experience I'd ever gone through. I think being honest and being kind to yourself, I think being honest with my kids about everything, that daddy's not coming back, we won't be able to see him anymore.

helping them process ahead of time so when it happens they know what is happening as hard as it is um after the fact I think don't ask what you can do just show up because I know as a mum you're so in the in the zone you don't know you need help until that moment it's really no you're right and I even me I didn't you just you don't think but you're right just show up just show up and if you and be okay with being told to go away um

if it's not the right time and but just show up anyway with love um i've had friends go through um losing their partners since then and you just do it and sometimes they've not been wanting guests at the time and you just drop it off and you leave it and that's fine and they message you like you just you have no idea how much that helped yeah so just being honest um in your grief as well like i was angry and i was sad and i was like why is everyone else functioning and i can't and just

being and why is the world going on why is the world going on when yours has ended and everything's in a you feel like it's frozen everything's frozen yeah and i think the best thing is be honest with yourself be honest with your kids obviously being a family that's really good advice it's really good advice because it's not it's not always like that out there

It's not, and I think there's a huge protection. There's a protection about death, babe, because I feel, and this is the other thing I wanted to ask you about because I, I don't know, watching the process and that you had lay at home after he'd passed. And I loved watching this. I loved seeing the family and actually understanding what it is and what death is.

And the transition to the next world and, you know, all of this. I can't explain how much. What did you do differently than most people wouldn't have done? Well, in Pacific Island culture, you bring the body home. So once he had passed, you go away and get prepared and you bring your body home. And we set up a room. You obviously have to have special conditions to keep them. At home.

at home yeah yeah yeah like cool no heat all of that kind of stuff have some diffusers going um and you look after their body and honestly we have them in a room the whole family sleeps in the room with them we sing we pray we process until the funeral so sometimes that's a few weeks sometimes that's one week and we had just over a week with lei and

you know what kyla like it it is the most beautiful way to celebrate your person and you have them there and it gives you time to process with them like i couldn't imagine lay being in some warehouse on his own yeah even though his spirit's not there yes okay i'll be just a moment love you agree um but even for my kids you know literally seeing daddy

the way he was and he's different now and he's not in there anymore um you know at first my youngest was like when do you ever wake up and play with me and then and then once he passed and came home and they could see that they're like okay and then he went in the ground and just kids are so literal and seeing that it's not they are and then they could you know and it's such a messed up thing for them to process at such a young age but then it's part of life

and in our cult in you know our culture we hide it hide it get rid of it Get it out of the way. Don't upset anyone. It's like I can see where he is now. And when we go visit him at the cemetery, they know that that's where his body is, but he's not there. Like it's just it helped them understand because kids are so literal. And it's a huge thing to get your head around at such a young age. But also it was beautiful to have that time and process as a family all together and love on him and be with him until we had to separate forever. So it was good.

It was beautiful. It was beautiful and I was really, you know, I was really grateful that you shared that on socials because, again, it's a different way and it was also lovely to be a part of that process, I think, probably for people to see that there isn't just, you know, in the ground and that's the end of it and we pushed that aside and it certainly taught me a lot too at that time.

I think one of the last questions I'm going to ask you. Yeah. If Leigh could hear this conversation, and I'm pretty sure he's listening to us, what do you think he'd want people to know about his journey from his perspective? Good question. Honestly. That's a big one. I can hear him already. Don't stop living.

cancer doesn't define you what is going on in your body doesn't define you you know being from a faith background you know the plant was a huge stigma thing for us in the beginning and we did this so prayerfully and it's like you know we're given things here to use use them be happy live your life you know he had cancer but we went on holidays within limits um he

lived like he was going out and seeing his friends when he felt better on the plant and being supported and well enough like don't stop living um as much as you can process your feelings but don't let it define you don't be stuck on a stigma don't be stuck in i've got this and this is my life now like you are still you and

yeah I think that was one thing that he never stopped doing and even when he was in hospital literally Kyla I cannot tell you we're in palliative care and he this is in the beginning before he was in bed a lot he'd walk around the wards and being like oh are you all right and yeah and the water and I'm just like hey and like make friends with these people and like look after them and chat to them and it's like you're the sickest out of all these people yet you were just him and I think

Honestly, I think not stopping living, even though he had this diagnosis, he was meant to only have three months tops back in 2020, and he had two years. And I think that's a huge part of he still had that bit of life left to live, and I think that would be the biggest thing for him. I can hear it so loud. Don't stop living. Yeah, and it's a good message, thanks, Lei. It is a good message because it's a tough one, you know.

a very short time to process and to you know get your head around your situation and you guys both you know did it so well thank you so so well um but i want to say too like just we learned so much from that journey and meeting you and obviously we're still in connection yeah and we still use the plant every every day like i use it to help sleep when i need it um my kids have growing pains now we make oils with cbd and rub it on their legs it's just lovely but isn't it just the education and this is what you know people i think

understand with me sometimes i'm happy just to talk about the plant and work out what there's always a solution right and i came from a medical background my father was a doctor i was very much told that it caused schizophrenia and you should just stay away from it completely and you know so losing those beliefs and for you guys too you had stigma that you had to come across you know get across very quickly yeah and just giving it a go like it's yeah

can very much help you know not everybody yeah not everybody and the other stigma that comes as well as like doctors are so careful to not have things affect or dilute or integrate with their drugs like they're responsible for that and i totally understand it so again i guess my key message like lay had his mine would be to you know your body

trust yourself. Yes, yes. Don't be afraid. Advocate for yourself and say, okay, well, this is what I'm doing. How can you support me in this? Or if this is the path we're going with your care team, this is also what's important to me and that is so fine. They're your team for a reason. They work with you and you're not a burden. You're not a burden in asking. You're not a burden in deciding that you want to add alternative treatments in with your mainstream treatments. You might not.

And you might have that discussion with them and decide against it, but it's an informed decision then. But have a discussion and, you know, and I think, you know, one of the other, the biggest things I hear when people come to chat to me about this is don't go and see your care team or your specialist on your own. take a loved one with you who can advocate for you because you can't you've you're trying to listen and understand and it is it is quite full-on and when you're not used to it and i've had women crying really crying saying they're pushing me they're pushing me i don't know what to do because you know so ask questions take it you know take a loved one with you it's really important yeah you're entitled to that and you're also entitled to have

you know someone there if you don't understand the information can I have someone here to explain it to me in another way it might not be with your you know oncologist but there are people in cancer care if that's the path you're on And ask your questions to everybody. It's amazing what you pick up, isn't it? Like you just pick up so much. There's some amazing people in hospitals who will help you. You just got to find the right people. You've got to find them. You've got to find the right people and, you know, and push. When you're in pain and you know, again, we've said this, you know your body, you push. Don't let them tell you. Don't let them tell you. Like it's terrible. This is enough for you right now and we need to wait. If something's not right, it's not right.

Push, push, push. Only you and your family know, you know, your body. So I think I'd like to finish on talking about where you're at now and how, you know, how you're living your life, like after loss. As you can see. That little hungry one. We can't see the hungry one, but darling.

Do you want to say hello? Hi. So the boys are now seven and nine. Thea will be eight soon, my youngest. We just bought a dog. Did you? What kind of dog did you get? Oh, actually. A Grudel. Yeah, a Grudel. So that has been a really healing thing for the boys. Okay, here they are. What a gorgeous spitting image of Lea there.

Oh, there's the puppy. Mini Lay. Mini Lay. It's been healing for them. I kind of wish I did it sooner, but then again, being solo parent 24-7, it's a lot to take on.

working full-time i am part of a cancer research panel as a community representative repping for lay on our experience um and super passionate about advocating for your health um across all areas and yeah it's crazy it's busy but it's our life and i'm so thankful and i know you know we've been blessed in a lot of ways um

following our experience and we'll always carry that with us and it's heavy but it's made us so strong and hungry and thriving and growing thriving and growing and hungry yeah so I can't yeah I can't say how happy I am but they're happy and yeah you know life chaos it's great yeah thriving so I couldn't ask for more

Yeah, it's wonderful. It's so wonderful. And thank you for coming onto the podcast today to share your story. It is a beautiful one. And, yeah, I'm really grateful that you took the time. I appreciate you. Thank you, babe.