Tell us a little about yourself
I am a 39-year-old mother to 5-year-old twin boys and I work as an in-house lawyer. I am supporting my 38-year-old husband through melanoma.
How did you feel when you found out about his diagnosis?
One Monday morning, my husband got a bad headache which he thought was a migraine. He had no other prior symptoms.
On the Wednesday, when the pain relief he was prescribed by his GP did not improve his symptoms, he was referred for a CT. The radiographer reported two large brain lesions which correlated with melanoma brain metastasis. This diagnosis was given to us by a GP, whose prognosis for my husband was 6 months (this was 2.5 years ago now).
On Friday, after seeking opinions from two surgeons, he went in for brain surgery. He has no known primary melanoma.
When I found out about his diagnosis, I felt deeply shocked and completely devastated. My focus was on our 2-year-old twin boys and my husband. My instinct was to immediately find James the best care and educate myself so I could make informed decisions and so he had the best chance of beating this prognosis.
What challenges did you and your family and/or friends face after their diagnosis?
The initial short term challenges were simply getting through the extreme stress that comes with two brain surgeries, meeting with a genetic counsellor as they thought he was likely to have a rare genetic mutation which our children may have inherited (which turned out not to be the case) and various other scans.
There were also the logistical challenges involved in trying to keep life as normal as possible for our children who were too young to understand the situation and the fact that we were moving from Sydney to Brisbane the following month. We are very lucky to have a very strong network of family and friends who did so much for us and allowed me to concentrate on the key care my husband and children needed in these initial few weeks.
Once we arrived in Brisbane and met with our oncologist, I found the amount of technical medical information provided overwhelming, particularly in relation to the potential side effects of immunotherapy and the survival statistics presented.
I understand there may now be practical sessions given to patients and their carers prior to starting immunotherapy. At the time he commenced treatment the session scheduled for us focussed on chemotherapy and was not particularly relevant.
I wish we had access to the MPA telehealth nurse when my husband commenced Nivolumab and Ipilimumab, as he had numerous side effects. It was very difficult to determine which ones were serious enough that he needed to see his oncologist / be admitted, which he ultimately was on two occasions.
I lived in constant fear that I would overlook something critical or that I would waste valuable recourses by escalating something that was innocuous in the circumstances.
The melanoma telehealth nurse is a wonderful resource that would have really helped us in this period.
The other challenge I distinctly remember was a lack of support in areas that I knew were important from a holistic perspective, such as contacts for psychologists, dietitians and exercise physiologists.
I spent a significant amount of time researching those who were experts in these fields, so I could create the best network of health providers to support us. It would be wonderful if there was a directory that contained this information.
Given all the research regarding the microbiome and melanoma, I think its importance should also be highlighted with patients at the outset.
Tell us about your typical week as a carer
My husband’s journey is akin to a roller coaster ride. At times when he has suffered severe side effects from the immunotherapy and gamma knife including hepatitis and constant fevers. My role is as his carer in a physical sense and is all-consuming.
The most traumatic side effect was when he had a seizure while we were away on an island where my extended family lives part-time. I wish I had been equipped with more knowledge around how to assist a patient who has a seizure and how they present. This occurred during Covid and so I whilst I could accompany him in the ambulance, I had to leave him at the hospital emergency doors, not knowing if I would see him again.
This was extremely confronting.
Conversely, he has also had two 9 – 12 month periods where he has had minimal side effects from this treatment/disease and in those periods my role is more administrative and physiological. I try to do everything possible to make it easy for him to live as healthily as possible from a diet and exercise perspective and maximise the time he can simply enjoy being well and spending time with the boys.
My husband has had a mixed response to his treatment, so I also spend a significant amount of time understanding emerging therapies/trials and discussing them with his oncologist, who is incredibly generous with me in this regard. This pre-planning in case a treatment fails has helped us both psychologically. When his initial treatment failed it also meant we were prepared with the next trial therapy almost immediately.
Is there any advice you’d like to give for someone who is having a difficult time as a carer?
Try to remember the really difficult times are not permanent, and “this too shall pass.”
As difficult as it is, it’s really important to make time to look after yourself. Often socialising with my friends is the last thing I think I have the energy for, but once I make the effort, I am always glad I have.
Finally, accept support from those who offer it and give them clear, practical things they can do to make your life easier. People genuinely want to help but often don’t know how to. If in doubt, I have always found people cooking meals so helpful. My incredible best friend always organises a dinner-making roster with our extended group when things get particularly rough and I appreciate it so much.
What got you through the most challenging times?
My family, my children and knowing we were doing everything possible to give my husband the best chance of recovery.
I also find great benefits from mediation, exercise and wine (everything in moderation)!
Do you have support from others?
Yes, we are very lucky. Both our parents give us an incredible amount of support and we have nine siblings between us and wonderful friends who are also very supportive.
Both our employers are also incredibly supportive, I think particularly because they have firsthand experience with cancer diagnosis in their own personal lives. They have given us the space to take breaks from work when we have needed it and to then return when we can.
Importantly, we also have a wonderful oncologist who gives us a lot of confidence that my husband is receiving the best care possible.
How has being a carer affected your outlook on life?
Whilst I feel like it is a large responsibility and at times it is a heavy burden to carry, I am in awe of the way my husband manages his diagnosis. It is because of his courage that it generally feels like a privilege to tackle this challenge with him.
He doesn’t let fear of the unknown or the statistics dictate the way he lives his life. He is just so grateful for each day we spend together as a family and I am too. There are also so many, mostly material things, that just don’t matter anymore.
We are also fortunate to be in circumstances and to have so much support, that we can really enjoy the time we have together.
There are of course times, like when his three monthly scans approach and we await the results, that it is very difficult not to be overwhelmed by fear.
Do you have a motto or personal mantra?
Not really but I try to apply these philosophies to my daily life…
“Before you judge, walk a mile in the other person’s shoes”.
“Treat others how you would like to be treated”.
I’m happiest when…
I am with my three boys on the beach (being my husband and the twins).