Blood cancer hasn’t stopped Lyndell travelling for work and leisure
One of the first things Lyndell Wills did after being diagnosed with a blood cancer was to plan her dream holiday to South Africa.
“I had wanted to go all of my life,” says Lyndell.
Travel is a passion, and while the businesswoman and mother of two from regional New South Wales had travelled widely, the time had never been right to go on a safari, feed giraffes, and visit a rhinoceros rehabilitation centre.
“Suddenly, I wasn’t putting anything off any longer, so I went with the family at the end of 2015 and absolutely loved it.”
This was despite being berated by a doctor who told her going to Africa was a stupid thing to do and her reply was, “well, if I’m going to die, I’m not going to miss out on going to Africa”.
“I’m very compliant about taking medications and turning up for appointments. What doesn’t make sense to me is why I have to sit at home and twiddle my thumbs when I could be doing other stuff.”
“My very first call ever to the Leukaemia Foundation was to ask them about travel insurance and the reciprocal rights of where Medicare can be used.”
“I really struggled to make that call because it meant accepting my diagnosis was real. I was quite emotional, but I felt like I’d just been given this huge hug and I was helped practically with the information I needed.”
Lyndell travelled a lot between her diagnosis in early February 2015 and having a bone marrow transplant in late 2017.
Her two daughters turned 12 and 15 in 2015 and one of the things she and Anthony decided was to “make as many memories as possible with the kids”.
“For me that involved travel, and we tried to squeeze quite a bit in,” she says.
After Africa, they went to Paris and London for her eldest daughter’s 16th birthday, and further into 2016, the family did what Lyndell describes as a “taste of Italy tour “during the school holidays.
Since then, she’s been to Machu Pichu in Peru, which she’d always wanted to see, and to Rwanda to see the gorillas – something she had dreamed about for a long time.
“It was very expensive and had been planned for 2020, then the world shut down.”
“I had this picture of the gorillas on my pantry door for three years – it was my motivation to not buy things and continue saving.”
“For me the main thing is always about what I can do with animals,” explains Lyndell.
Coping with a blood cancer diagnosis and travelling for work
Travel is integral to Lyndell’s work as a conference and event planner. When she got the shocking news that she had myelodysplastic syndrome (MDS), she had a work trip coming up in two months – a Mediterranean cruise.
“I didn’t know if I was going to get there. At first everything I was getting told was about needing to be careful and not travelling,” she says.
“Every second year one of my favourite client groups does a big trip – a general medicine conference, which I organise and normally it’s a cruise.”
“I’ve been to the Galapagos with them and the Caribbean. We did a Kimberley cruise last year in Western Australia, and I’m just back from going to the Arctic with them.”
Lyndell was successful in getting to the Mediterranean in 2015, and her partner/now husband, Anthony, was there too. He joins her at times, if Lyndell plans a holiday around a work trip.
When she got sick during this first international trip post diagnosis, she said, “I got quite fearful and a bit panicky” and on one particular day, she kept taking her temperature.
“It never got too high,” says Lyndell, which was lucky, because when she got home she found out her my thermometer read a little low!
“Again, I’m really lucky because all my clients are doctors.”
One of the speakers on that trip, a psychologist, helped Lyndell to calm down and “one of the doctors thrust a cup in front of me and said, ‘take this’, and then I was fine”.
“I think it was more mental unwellness than physical. What I had was no worse than a head cold, but it had been drummed into me that ‘you can go from being perfectly well to dead within four hours’”
“That trip helped me understand that I can get sick and I’m not going to die, so I let go of a bit of the fear of the actual travelling.
“Then, the following year, it was the planning that became the fearful part of it for me.”
And Lyndell’s job is all about planning, and she’s always looking years ahead.
“So I’m on one trip and planning the next trip or the trip after that, and I went through a period where this idea of planning was quite frightening, because… what if I plan all this and it can’t happen?”
When Lyndell returned from her first trip to Africa, she began organising another one there, for September 2016, but by the beginning of that year, she was really struggling with that whole idea of planning.
“It was my psychologist [the one she met on the Mediterranean cruise] who got me through it,” she explains.
“It’s a long story but she kept saying, ‘well, so what if you can’t go?’, and I kept saying, ‘well, if I plan it and I can’t go, it means I’m getting sicker’.”
“Her response was, ‘you know you’re getting sicker so that’s not new. You know your myelodysplasia is going to keep progressing’.”
“Then I was like, ‘well, what if I spend the money and then I can’t go?”
“And she’s like, ‘well, yes, that’s going to hurt a bit, but that’s not the end of the world’.”
“I kept coming up with excuses of why I shouldn’t be planning, and she kept challenging my thought processes of why I was making these excuses of not going.”
“Ultimately it came down to this – I get so much joy out of the whole planning process of a trip. I love doing the research and I love looking at different things to do and different ideas.”
“And in the time between when I was talking to her and when we were going on the trip, I would’ve had six months’ worth of planning, researching, and anticipation – that’s six months of endorphins and the joy of doing that,” Lyndell explains.
“Even if I didn’t get there in the end, it’s still better than six months earlier deciding that I can’t do it because ‘what if?’ and not having any of that joy.”
“And potentially, I could get to the end of that period and be well enough to go, then regret that I never did anything about it. I was sitting at home when I could have been in Africa.”
“So that really helped me going forward in terms of letting go of some of that fear of planning.”
“I went ahead, planned the trip, and the week before it was one of the times I got hospitalised interstate.
“I potentially thought the whole thing was going to just be called off, but we got there.”
The Wills family went to South Africa again in July 2017 and while there, Lyndell and Anthony were married.
Just six weeks after that trip, Lyndell got the call that her MDS had progressed to acute myeloid leukaemia (AML). She went straight to hospital and had chemotherapy treatment before having a bone marrow transplant*, thanks to an unrelated donor from Germany.
Lyndell’s approach to travel insurance
“My job is all about risk management. When we’re doing big events – we’re working with contingencies – and my approach to travel is the same. You’re ready to troubleshoot,” says Lyndell.
“I travel with antibiotics and there’s always this plan in place for ‘if something is to happen, what we are going to do?’”
“We might not have every single detail down pat, but we have this sense of what happens if I suddenly start running a temperature and get sick.
“We have a plan of ‘where’s the closest centre we’re going to get to?’. That’s back-up because I didn’t have travel insurance for the myelodysplasia.”
“I would have travel insurance for theft, or broken legs, and the other normal things but I couldn’t get it for anything that happened because of the myelodysplasia.”
“So I’d declare that I had a pre-existing condition and when asked if I wanted cover for MDS, I’d say ‘no’ because then you either don’t get cover or it’s ridiculously expensive.”
“Our travel insurance was basically travelling with antibiotics, understanding how to take them if needed or taking them as a prophylactic, and resting.”
“And making sure we could get ourselves to an airport and home to Australia or to one of the other countries with reciprocal health agreements, if that need arose.”
“We needed to have a credit card with a big enough limit or have enough money so we could turn up at an airport and buy two tickets on the next flight home, ideally business class.”
“That was the final step if we got to an emergency status, and hopefully the other things we’d put in place prevented ever getting to that point, and in my experience that worked for us.”
Adapting to living with blood cancer
In 2015, after finding out she was on a watch and wait protocol, Lyndell was relieved that she didn’t have to pack up and go to hospital for treatment.
The first questions she asked her haematologist were, “can I still do my work?” and “can I still go to Adelaide next week?”
This was a work trip and two of her staff were about to go on maternity leave.
“I didn’t have time to stop and think about travel. I just had to do what I had to do.”
She admits that first trip, because it was to Adelaide and it was the week after being told she had MDS, “was actually quite good… to get on the plane, get there, and just be by myself”.
“The weather in Adelaide was beautiful and the Adelaide Festival was on. I wandered aimlessly through the mall when all the street performers were there.
“Being away and being outside and seeing everybody getting on with their lives and things happening was a really good experience,” says Lyndell, after the initial shock of her diagnosis.
“I managed to regroup a bit and for me that first trip was really helpful.”
Lyndell made some major changes to her company the year after her diagnosis, splitting off part of it to a staff member who took over the arm of the business that was “more high energy and high stress”.
“And I took what was supposed to be the easier part of the work,” says Lyndell.
“The idea was that I wouldn’t need to employ staff again. It would just be me.
“But in the last year I have had to, which brings its own headaches, and now, seven years on, I almost need to split my business again. It’s just got busier and busier.”
“I’m a bit of a workaholic and one lesson I haven’t learnt very well through this whole process is how to slow down a bit more.”
Lyndell’s travel advice
“I’m very much about not letting the diagnosis stop you,” says Lyndell about travelling with a blood cancer.
“Do what’s right for you and work out how you can manage it. Part of that is having the right medical team around you to help you achieve what you want to.”
“I was in a transfusion lounge one day and an older man there was talking about how much he wanted to get to Hobart for a family event, and I was like, ‘well, why aren’t you going?’ And he’s like, ‘oh, I can’t go with this’, and I was like, ‘yes you can’.”
“That’s when I want to say, ‘lose the fear but be sensible’ – that’s the message I try and get across.”
“I’m not approaching what I’m doing flippantly,” she explains.
“There are contingency plans in everything we are doing. Anybody travelling should have that thought process before they take off – whether you are well or not – because you can go overseas and something else can happen.”
“You need to have an idea of what you’re going to do in those circumstances.”
“I said to the man who wanted to go to Tasmania, ‘they’ve got perfectly good hospitals in Hobart’.
“If you want to do something, talk to your doctor about how you can potentially get there, and the things that you have to keep in mind.”
“You need to just be a bit more confident.”
Lyndell’s travel advice, in a nutshell, is to travel with antibiotics, talk to your doctor before you go and travel with letters from your doctor. Also, follow all the practical advice in the Leukaemia Foundation’s Travel and blood cancer webinar, and Lyndell was among the guest speakers.
“All my work is planned 12 months in advance. I know where I’m going to be throughout the year,” says Lyndell.
Her haematologist “was always very supportive, and at the start of each year, Lyndell would take her diary to her haematology appointment, and her blood transfusions would be planned around her travel.
“It became a bit of a joke when I turned up to the transfusion lounge. The nurses would go, ‘where are you going now?’ because pretty much all my transfusions were planned around the travel I was doing.”
“And sometimes I would have to be topped up a bit more because of going away for longer.”
“Part and parcel of my planning and getting ready is that I have to time in these transfusions.”
Lyndell recalls telling a doctor at a meeting in Sydney about having a transfusion the day before so she could get to the meeting.
“His response was, ‘oh my goodness, I’ve got to have a coffee to get started. Your preparation for the day is at a different level – it’s far greater than mine is’.”
Lyndell’s list of what not to do while travelling includes getting a tattoo overseas or a piercing, “and don’t do stupid things”.
“Don’t push yourself too hard and don’t make the itinerary so full that you don’t have time to catch your breath and have a rest.”
How Lyndell is travelling health wise and her bucket list
Lyndell says she is “quite well and things are quite okay now”.
“I’m not on any medication and am essentially living a normal life.
“I still have a monthly venesection to try and bring my ferritin levels down,” she says.
Being transfusion dependent for 12 months after the transplant meant her ferritin levels are very high from all the blood transfusions and she’s had venesections since 2019.
“If I was supposed to learn something from the whole experience, and slow down a bit, that hasn’t worked. At the moment I’m about to go away again.”
Having recently visited Norway and Svalbard in the Arctic, Lyndell would really like to go to the Antarctic. And, after a vivid dream about a three-month driving trip through the UK, Lyndell added England, Scotland, and Wales to her future destinations, along with Argentina, Alaska, and Canada.
“I want to go to Egypt and see the pyramids and there’s a huge number of places in Australia that I’ve never been to.”
“The joy and the energy I get from travelling, with the amount of endorphins running through my body, that’s the best medicine for me.”
*Lyndell had her transplant in Sydney where she and Anthony stayed in Leukaemia Foundation accommodation for almost three months.