parenting a teenager with cancer?

I've been keeping a blog for a few months now. it began as a way of dealing with the many issues which come up around supporting my teenage daughter through her cancer journey.  it is widely read by friends and family.  many of the posts, however, have nothing to do with cancer, but more to do with my growing awareness of my self.  there are many issues i'd like to write about, which do relate directly to being the mother of a teenager with cancer, but which will only have resonance for those in the same situation.

hence the birth of this blog.

I assume you have found this blog because you, too, are searching for some connection.  presumably, you, or someone very close to you, are the parent of a teenage cancer sufferer, and you have been searching amongst the plethora of medical related sites for something - anything - which helps you navigate on a daily basis.

I have seen just about every 'handbook' for parents of children with cancer, every brochure, every website dealing with the subject. I've logged into numerous forums and discussion groups. but I have yet to find someone speaking plainly about the daily challenges, and the small gifts of clarity which can be found, hiding amongst the dross.

so, this is my hope for this BlogSpot. here is the place where I will truly express what is on my mind, and tease out the lessons as they arise, finding the little glimmers of gems as they struggle vainly to shine amidst the shit. 

here is my story:

I am 39 years old, and the single mother of three beautiful daughters. my eldest, maia, recently turned 18.  when she was 16, she was diagnosed with a primary, high grade angiosarcoma of the left breast.  she had three surgeries - her entire breast was removed - and six weeks of radiotherapy.  she then enjoyed nearly a year of disease free life, in which she completed her last year of school.  two days after Christmas last year (2012) we were told that her cancer had returned, and she now had multiple sites of secondary angiosarcoma on both lungs.  the largest tumour was bigger than her heart, and was wrapped around her main airways, and blood vessels supplying her left lung.

in January of this year she underwent two more weeks of radiotherapy, and has just completed her fourth and final cycle of chemotherapy, using single agent doxorubicin.  the cardiotoxicity of this drug means she can have no more of it now, as it will undoubtedly affect the function of her heart, which was already compromised by the two rounds of radiotherapy. scans in a couple of weeks will tell us how the tumours have responded to the chemo.

I have two younger daughters, arky who is 11 and mally who is 6.  I am raising the girls alone. the father of my two younger girls committed suicide last easter.

so, the spectre of death looms large in my little family.  mally likes to talk to her dad's photo, telling him all that is going on in her world.  she chatters about cancer easily.  the other day, as I was preparing the only food her sister could tolerate, she said 'when I have cancer, i'm only going to eat plain pasta, all the time'.  it seems its all an adventure in her little mind.

mally, the youngest, is the most at ease talking about death, remembering her dad and chatting easily about him and his death; though she does get teary and misses him often.

arky, my beautiful middle child, is worryingly self contained.  she doesn't like to raise the subject of her dad, but will participate in conversations about him.  she doesn't want to talk about cancer, either.  she, of all of them, has the greatest sensitivity about what this is doing to our family.  she is aware of the inequities at play.  though she has never spoken it, I know she feels a bit left out, that everything now is about maia, and her needs.  she has an eerie sensitivity to what is going on for me and how hard I am working to keep everything together for them all.


maia, the patient, does not speak at all about death or dying.

In all the literature I have seen about children with cancer, it appears that young adults are the unseen ones.  my daughter was on the cusp of adulthood when diagnosed.  she literally could not wait to move out of home, to chart her own course unencumbered by the needs and wants of her mother and little sisters.  we live on a multiple occupancy community in the middle of the forest, 40 minutes drive from the nearest major town.  all she wanted was a clean apartment in the city, university study, and all the delights of city living.

diagnosed at the age of 16, having her breast removed, adopting a diet devoid of sugar, dairy, wheat and preservatives - these things arrested her development. she still has never had a proper kiss. she's never been drunk - despite the best intentions of her friends!

now, at the age of 18, she is stuck still living with her mother and little sisters in our hippy shack in the forest.  she has a taste of the life she dreamed of - her dad gave her a brand new car for her 18th birthday, and she attends uni one day per week in Brisbane. so she drives up there and spends a couple of days per week with her paternal grandparents - assuming she is well enough from her chemo regime. this, in reality, has meant she has been to uni about  7 times in three months.  she is not in a position to live the student lifestyle. she is enrolled in only one unit, which she often can't get to.  she misses out on the opportunity to make friends, attend events on campus, organise study dates.  all of her close friends are working two or three jobs to save the money they will need for university next year. while they all live within ten minute's drive from here, we never see them. they are so busy, and while riding this rollercoaster with us, they have grown bored with providing entertainment for the bed ridden patient.  I don't blame them, but I do wish it could be different.

arky spent most of last year waiting for maia to move out so that she could move into her bedroom.  mally is still sharing with me, and that will not change as long as maia is in the house as there is no other room for her.

and me? well, I hit rock bottom in about November last year (pre secondary diagnosis) and decided that once maia had moved out of home I was going on a road trip with the little girls.  I really wanted some time off the rollercoaster, to just focus on them and help them process the death of their beloved dad. so we had it all organised. school was informed and I was extricating myself from my two businesses, to allow us the time and space we needed to reform as a family.

then - BANG - a new diagnosis, and a new direction.  I never did get away. I never did extricate myself from my businesses.  so, instead of stepping off the ride, I ended up ensconced on a new, and more terrifying one.  I am working several days per week (chemo regime permitting yet again!) and managing the lives of two young children - sports training and weekend games, music lessons, gym classes, school responsibilities, playdates and parties - as well as being the cancer manager - endless medical appointments with oncologists, GP's, alternative practitioners; regular CT scans, heart scans, blood tests etc etc.  and bearing in mind that I live in the middle of nowhere so every appointment requires at least two hours return driving time.

so, I am completely and utterly exhausted. but there is no scope for me to lay down my arms and surrender.  there is no option but to carry on.

blogging for me has become a lifeline.  it has allowed me the space to ponder, and to express the little moments of clarity which come my way, whilst chopping wood, hanging laundry and washing windows.

I have found this journey one of accelerated growth.  I have no option but to grow and develop and learn.  for that reason I feel this is a very powerful time, and one which deserves documenting - for what purpose I know not.

but I don't believe for a minute that I am alone in this.  while my daughter suffers from a ridiculously rare and cruel form of cancer, the journey is the same for any of us stuck in this fairground house of horrors.

I do believe, however, that there is something different in it for those of us supporting our near grown children, that is not represented in the many books and websites I have consulted on the subject of death and dying.

navigating the health system in support of an elderly relative, or caring for an infant with a life threatening condition, are vastly different to supporting a still dependant young adult who is extremely unlikely to ever enjoy the benefits of independent adulthood.

so it is this journey I am mapping.  this is definitely uncharted territory for me, and I hold faith that in constructing a map I may find purpose, and may make the journey a little more bearable for those who come after me.

I expect it to get pretty raw on here at times.  this is the place where I will vent, and it won't always be pretty.....