Travelling is fuel for the soul and she needed some recharging. Over 600 miles away from her hometown in Tasmania, Maija enjoyed some days off in Sydney, Australia. Two birds, one stone: the most populous and multicultural city in Oceania promised to be a dazzling destination and also allowed her to reunite with her brother. That was her thing: wanderlust and family.
It was September 2018. The break would serve to release some of the pressure she’d been under at work. After all, being in charge of opening up a new geriatric and palliative ward was no job to be underestimated:
After a whole year of planning, buying equipment, staff recruitment, and creating an entirely new model of care, a few months of sporadic headaches didn’t seem alarming. They’d last less than 20 seconds and, although intense, it was easily explainable with so much going on at work.
At least, while she was still at work.
Why would the headaches continue during holidays, when all there was to worry about was the itinerary for the following day?
That’s when Maija Kumpulainen, 37 at the time, knew that something wasn’t adding up —there had to be something else behind the thumping in her head, the distorted hearing, the flashes of lights, and the fact that she nearly passed out both at work and on vacation. The excuse of stress had ceased to make sense.
Maija went back to Tasmania, where she was born and raised, and visited her general practitioner (GP).
The GP sent Maija for a magnetic resonance imaging (MRI) that, unexpectedly (and fortunately), got booked immediately for a nearby hospital. Perhaps the odds were conspiring in favor of finding out as soon as possible that there was nothing to worry about, right?
Maija promised Sebastian, her 5-year-old son, that she would be back soon and left him in a waiting room with the facility staff, as she walked in to one of the most intimidating exams in her life.
He was her rock, and only those who were raised primarily by their mothers understand the complicity between a child and his mom in crucial moments like those.
Maija was brave, nonetheless, and tried to ignore the knot in her stomach while the machine around her made irregular beeping noises and all of her willpower was focused on staying still for the exam to turn out right.
Outside, her son also made an effort to be quiet while swinging his short legs over the floor. The air was tense and the room silent. It’s like a karma impregnated in waiting rooms, because for some reason they make it unbelievable hard to be patient and calm.
Back in the MRI machine, Maija took a deep breath as the beeping stopped and the exam was over. She walked out to the main desk to pay, slowly starting to recover and feel herself again. That was when it all went south:
“Excuse me, Miss. Kumpulainen,” a hospital worker told her, agitated and with a stern expression. “You’re gonna have to go to the emergency department”.
As a talented nurse —one she’d dreamed to be since she was a child— Maija knew that that was all but good news. And suddenly, her hearing was distorted again and she wasn’t feeling okay, but not because of the headaches, but because she was terrified. The fear of a mother is worth two.
She went back for her son, hugging him tight. She wanted to record that hug in their memories and souls, because, if anything happened to her, the only thing she cared about was that he knew he was never going to be alone.
Swallowing up her tears and trying to be as strong as he deserved her to be, Maija took her son by the hand and went to the emergency waiting room, where she called her family and informed them of the situation. They went and picked Sebastian up. As much as she didn’t want to be alone, she couldn’t stand the idea of putting him through all the anxiety of the waiting.
Eventually, Maija was told that she had to wait for a neurosurgeon to see her. Optimistically, she thought that maybe there was something going on in her neck, which, why not, could be triggering the headaches, right? Neurosurgeons are not specialized solely in the brain; they are also in charge of all related to the spine and other nervous system parts. Which, okay, wasn’t exactly encouraging, but it had to be better that something going wrong with her brain.
Two endless hours later, the neurosurgeon finally sent her to his office and presented the images of her MRI scan. Completely dissipating her hopes there was it: a tumor the size of her fist on the right side of her head. Maija’s thoughts went blank by then. Everything was foggy and seemed surreal, like maybe this was a movie and it wasn’t her life the doctor was talking about when they planned surgery six weeks from then.
Little did she know that, despite assuming the size of the tumor must have meant that it was benign (because cancer develops so fast it couldn’t be it), that moment would only be the tip of her GBM iceberg.
Back to the surgery timeline, six weeks turned into five as Maija’s symptoms started to get worse. The intercranial pressure in her brain increased, leading to more painful headaches and occasional vomiting, and to the surgery date moving one week early, precisely on Maija’s 38th birthday.
It’s strange how the universe work sometimes —on October 24th, 2018, Maija had to lay down and let Calvary Hospital surgeons open her up to fight for her life on the day she was supposed to be celebrating life itself.
Five hours of skilled neurosurgery work later, though, it had all been worth it, as the dream of any patient in her situation was fulfilled: the tumor was completed resected from her brain.
However, the blissful fantasy lasted for just one week. She’d been recovering in the hospital from surgery, when the doctor and a nurse she’d never seen walked in Maija’s room:
“I’ve got the results,” he said. Maija recalls to this date, word by word, what he said next: “I’m really glad I’ve got you by yourself. I’m glad your family’s not here, because I feel like we can have a medical conversation about this.” A pause. By this point, her stomach had already dropped. “It is GBM: glioblastoma grade four. And that probably means that you’ve got about two years to live”.
Oxygen in the room disappeared —or that’s what it felt like for Maija’s lungs. What are you supposed to do, by yourself, when some doctor you barely know drops a bomb like that? What are you supposed to say? Not to them, but to your family and the son you’re raising?
Fighting the odds — The aftermath of the initial diagnose
Around a month later, Maija went to the hospital to move forward with the game-plan for her health.
The oncologist taking care of her gave her his take on her life expectancy, which, luckily, was in her favor:
“You were told two years? Oh, no, not two years. No, no, no. You’ve got at least five!” And he said it with such a convincement and ease that Maija couldn’t believe she would ever be so happy to hear she had five years to live.
Any other day, it probably would’ve devastated her, but that day? That day her lifespan was more than doubled what it was before. She crossed that door and she felt blessed.
He explained that the tumor had just converted in the middle to a grade IV one. Meaning, that the outside of the tumor was most likely between a grade II to III, and thus explained the increase in her life expectancy.
The following steps were radiotherapy, chemotherapy (which had to end early since it depleted her platelets), and six months of Temozolamide, an oral medication known to be a first-line treatment for glioblastoma multiforme.
After going through the radiation and chemo, Maija was even lucky enough to be able to go to Europe for six weeks with her family “to create some memories”. Again, travelling is fuel for the soul. Thinking back to when she was diagnosed after her holiday trip, who would have said that less than a year later she’d be enjoying traveling again, celebrating that she’d overcome brain cancer after all.
Against all odds, Maija is rewriting the script of what at first was a death sentence. To date (September 2022), there are no signs of evidence of Maija’s GBM returning. She has four monthly MRI scans —that are still as scary as the one back in 2018— and the only side effect throughout it all was a bit of vision lost in the middle and in the upper quadrant of her eyes:
“It was worse before surgery. It’s actually much better now: I can still drive, I can still work. It just takes me a little minute to catch up when I’m reading, and I won’t be able to fly a plane ever, though. I guess I could take that off the bucket list (laughs). Other than that and bit of fatigue I can live pretty normally now. As normally as you can with this sort of hanging over head all the time.”
Maija took a break from her job after her diagnosis, but in April 2021 she went back to the hospital to be the manager of the ward she’d put so much effort in creating.
The problem of one is the problem of all: How cancer can affect a family group
Although cancer (generally) affects just one person in a family group, they all suffer from the disease.
For Maija, it shaped her relationship with her son, her parents, and the father of her son.
Sebastian, now 9 years old, is Maija’s reason to wake up everyday. For him, seeing his mom without energy and needing to be taken care of wasn’t easy: she was the one that had always taken care of him, not the other way around.
Even when Maija considers her son emotionally intelligent, she knew she couldn’t explain to a 5-year-old everything that was going on. Still, to date, she doesn’t feel comfortable talking to him about the distant future, or making promises she’s not sure she can keep.
As long as she’s healthy, though, she doesn’t need to worry about that and she can stay focused on protecting him from feeling worryness, fear and anguish.
Regarding her parents, who moved in with Maija and her son for a good six months after her diagnosis, the relationship evolved as they took care of her and she made peace with the idea of losing some of her independence temporarily.
Luckily, eventually Maija was ready to regain her autonomy and, even when her parents still wanted to care for her, they accepted that chapter of the story had come to an end.
As for Sebastian’s father, with whom she’d always had a great relationship with, now the responsibilities are more balanced and they all get to enjoy the time they spend together more.
How cancer changes you (and some recommendations by a GBM patient)
Nowadays, Maija has a more balanced life and tries to give her personal life the same importance she’d always given it to her career.
She’s also more aware of the stress in her life, tries to exercise regularly enough, and supports on alternate medicine to continue a healthy lifestyle:
- Ketogenic diet: recent laboratory experiments1 showed that the keto diet decreases glucose levels in tumors; in other words, it helps starve cancer. The diet also elevates ketone bodies produced by the liver (small water molecules used as an energy source when glucose is not readily available), which puts additional stress on the cancer cells.
- Herbal supplements: boswellia is an herbal extract that reduces inflammation in people with conditions such as arthritis and asthma, but that some studies2 suggest may also inhibit cancer growth. Likewise, ashwagandha, a traditional Ayurvedic medicine in India, is helpful to reduce stress and animal studies3 have found that it could boost the effects of radiation therapy.
- Melatonin: this hormone self-produced by our bodies can be taken as a supplement for improved sleeping quality.
However, she recognizes that obsessing over “healthy habits” is counterproductive as well, as in past moments of her life she was so fixated on that kind of lifestyle that it led to anxiety and self-imposed pressure.
Habits aside, Maija is now more focused on the present, enjoys making plans for the near future, and says “yes” more often than before:
“I find it really hard to plan too far in the future. I can’t plan what I’m doing next year, but I can decide where I want to travel in the next six months. (…) I don’t think cancer has completely changed me as a person, but I probably don’t say no as much as I used to. I say yes to a lot of things now.”
How do you deal with a GBM diagnosis? (Advices for patients by Maija herself)
Keep in mind you’re not a statistic
All I’d read when I first had a little bit of knowledge about brain cancer was bad. It was all bad.
I had to stop research, because everything was negative and with my medical background statistics were really, really shocking.
Even the good news stories always start off with the statement “Most people will die within 18 months of diagnosis”.
That’s why, if you’re recently diagnosed, I strongly advise you to avoid looking at that information.
I’m not a statistic and neither are you. I’ve heard since I’ve got diagnosed that there are many positive stories of survival and that’s where we should all put our attention on.
Everyone has their own journey
I’ve seen that as a nurse on the ward, and I think that’s how I was able to nurse patients with brain cancer, because that’s their story. That’s not my story.
There’s not necessarily one pathway to health. You don’t have to follow the medical model purely. Look at different options and find something that you believe in.
It doesn’t have to be the right thing, and it doesn’t have to necessarily even be evidence-based if it makes you feel like you are contributing to your health.
The most important thing is to focus on your own personal and unique journey and find whatever works for you and your wellbeing.
Find support in your loved ones
I was incredibly close to my family beforehand and even closer now. To me, they’re my rock.
I used to be a full-time working single mom that was really independent. It wasn’t completely easy to give that up and accept I needed their help, but eventually I embraced it.
Now I know that I can call on the help whenever I need it, and that by doing that I’m helping my family.
Don’t be scared to feel like a burden, because your loved ones will always take care of you without second thoughts.
I have a lot of people who tell me “You’re just a superwoman”, or “You’re a survivor”. And I don’t feel like that. I feel like I’ve been dealt this really unfair deal, but I don’t have a choice. You know, what am I gonna do? Am I going to sit back and just take it? Does it make me a superhero or any kind of special person just wanting to survive for my son?
Make a good match with your GP or head oncologist
I found a really good GP and he’s been quite important in my journey as well.
Whether it is your GP or your head oncologist during the process, it’s important that they can give you hope and have similar approaches to your health.
Mine works within the medical model, but was also very happy to look at things outside of that.
Working alongside him was key during my recovery.
“How do you explain this to a 5-year old?” (Advices for ill mothers by Maija herself)
Dedicate yourself to your child
Most of the time, all children want from you is time.
Memories don’t have to be huge events, places or gestures. Instead, what any kid wants to feel is that you offer them your most valuable asset: time —and, specifically, quality time.
I think it’s the little moments when they feel they are loved, so don’t overthink it and enjoy all moments, whether big or small, with your child.
Don’t underestimate them
Children are pretty receptive and pick up on emotions and “adult conversations” about what’s going on.
Check in with them and ask if they’re ok or if they have questions.
This will show them that we know they realized something is happening and that we care about being transparent and honest with them.
Making them feel included takes a lot of stress off them.
Beware of what may happen
Even when it’s difficult, thinking about the distant future is sometimes necessary.
In my case, I use an app called Record Me Now. It’s a list of questions children who lost their parents when they were young wish they could have asked them, and you can record your answer.
No matter the tools you use or the format you choose, it’s good to leave something for your children to hold onto when you’re no longer around.
Support communities: How to make the most out of them?
Maija, as a member of Infusion 51a’s Glioblastoma Support Group, gave us her insights on the pros and cons of joining these types of spaces as a cancer patient.
The main benefit of being part of a community is that you have a safe place to vent, to be heard and to be understood. No matter if it’s the positive or the negative news, your peers will be there to offer support and encouragement accordingly.
It’s also a place to recharge batteries and find inspiring stories every time the patient’s hope seems to fade away. However, here comes the not-so-good part of support groups, especially regarding glioblastoma:
With such disheartening statistics, it may be difficult to find good stories, in comparison with other cancer types with better survival rates.
In Maija’s experience, these groups are a good source of information and hope, but could sometimes charge members with more loss and despair than they already have to deal with in their own lives.
Luckily, with the proliferation of digital platforms, people can decide what site to register, what type of group to join (support, informative, dedicated to relatives…), and exactly how much they get involved in the community dynamic.
If you want to be part of our support group, click here.
Related: Where is Australia standing in the GBM scheme?
PrOSPeCT: an initiative for better clinical trials
Precision Oncology Screening Platform Enabling Clinical Trials (PrOSPECT) is an important new initiative aimed at improving access to clinical trials for Australians diagnosed with cancer, announced in March 2022.
Over the past decade, immunotherapy and other new treatments have transformed outcomes for thousands of Australians diagnosed with cancer. However, 46,000 Australians a year, including over 200 children and young people, are diagnosed with cancers with limited treatment options4.
PrOSPeCT will open up new treatment paths for children and adults across Australia with difficult to treat cancers, helping thousands of eligible patients to gain access to comprehensive genomic profiling (CGP) and enabling more efficient clinical trial screening.
The PrOSPeCT initiative will establish Australia as a medical manufacturing hub: building links from research through to the clinic, creating jobs, and changing lives.
AGILE is coming to Australia
GBM AGILE, Glioblastoma Adaptive Global Innovative Learning Environment, is a seamless clinical trial aimed at identifying the most effective therapies for patients with glioblastoma5.
GBM Agile moves away from the traditional, one-size-fits-all approach to clinical trials and it’s a major step forward for precision medicine.
This next-generation clinical trial program and adaptive platform trial for brain cancer is designed to accelerate finding better treatments for GBM, and will hopefully impact the lives of thousands of Australians, including Maija, who shared with us her desire to participate in the program once it’s running in Australia.
If you want to help fund this revolutionary cancer trial in Australia, click here.
Final thoughts: the FANN campaign and our take from our chat with Maija
As a team, Infusion 51a couldn’t be prouder of counting with such inspiring people as Maija in our community.
Her story, currently a needle of hope in a haystack of discouraging statistics, serves as a flagship for a message we’re determined to share with all cancer patients: your story is more than just a percentage of survival rates or an average life expectancy statistic.
Based on the premise “there is a person behind each diagnosis,” we seek to humanize statistics through thoughtful narratives faithfully portraying cancer patients, family members, and caregivers’ experiences with our campaign Faces, Not Numbers (FANN).
If you want to read the rest of the stories, click here.
If you want to participate and be part of our interviewed members, click here.
Sources
- Garritano, G. (Year). The #1 Best Eating Habit for Pancreatic Cancer, Says New Study. Eat This, Not That! [March 2022]. [Online]. Available at: https://www.eatthis.com/news-best-eating-habit-for-pancreatic-cancer/.
- Xia D, Lou W, Fung KM, Wolley CL, Suhail MM, Lin HK. Cancer Chemopreventive Effects of Boswellia sacra Gum Resin Hydrodistillates on Invasive Urothelial Cell Carcinoma: Report of a Case. Integr Cancer Ther. [December 2017]. [Online]. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5739138/.
- Devi PU, Sharada AC, Solomon FE. Antitumor and radiosensitizing effects of Withania somnifera (Ashwagandha) on a transplantable mouse tumor, Sarcoma-180. Indian J Exp Biol. [July 1993]. [Online]. Available at: https://pubmed.ncbi.nlm.nih.gov/8225418/
- Children’s Cancer Institute. (2022). $185 million investment to fast-track treatments for rare and ‘untreatable’ cancers. [March 17]. [Online]. Available at: https://www.ccia.org.au/blog/-185-million-investment-to-fast-track-treatments-for-rare-and—-untreatable—-cancers.
- National Brain Tumor Society. Clinical Trials: GBM AGILE. [Online]. Available at: https://braintumor.org/research/clinical-trials/gbm-agile/.
