The word ‘Journey’ is frequently trotted out when discussing Breast Cancer. It’s the name given to the guide that’s provided to newly diagnosed women by the Breast Cancer Network of Australia, or BCNA as it’s known. With all due respect to the lovely people who craft these valuable resources, I can’t tell you how much that term gives me the shits. Aside from the fact that to me this term feels unwittingly condescending, the word can also imply a willingness and enthusiasm to participate that is completely absent. After much deliberation, I have decided that the term ‘road trip’ sits so much better with my Child of the 70’s sensibilities. Yes, family road trip circa 1978.
Sardined into the family car (in our case a bright orange VW Kombi) we endured annual road trips to destinations not of our choosing at the mercy of a slightly dictatorial, gadget-loving father. We all undertook these road trips under suffrance but invariably they presented us with ultimate payoff when you’re from a large family (or in fact a family of any size), the opportunity to escape both parents and siblings, room to roam and moments alone punctuated by the usual fraught family interactions.
The Traveller – That Would Be Me!
According to my Twitter profile I’m “addicted to podcasts, audiobooks, chortling, creativity, my girls and my bloke; the priority of which may change without warning.” If I wrote this, it must be true.
I’m a bit of an oversharer if truth be known. Along with this trait, here’s a few more nuggets from the goldmine that is my personality:
- I tend to leap enthusiastically long before I look.
- Strangers think I’m confident. This is a complete ruse.
- I wear my heart on my sleeve and have the nicks and scratches to prove it.
For a long time, I wrote a blog read only by my family and as I later discovered, the occasional school-mum who enjoyed that oversharing tendency I mentioned. In late July 2013 I morphed into a paragon of cancerous virtue thanks to my Breast Cancer diagnosis and have been attempting to act beatifically ever since. Most days I fail. My children and husband still love me despite the fact that they live with a post-menopausal psycho thanks to my brush with Breast Cancer. The same school-mums resent me but can’t criticize me due to aforementioned saintly standing within the school community. Hey, there has to be some upside to ‘battling’ the big C.
My Travel Bag
Embarking on my road trip to Breast Cancerville, I set off with some essential items:
- A pretty good idea of the end point (remission of my cancer)
- Stopovers and landmarks identified and noted along the route
- Most direct route via marked and well travelled roads marked on map provided
- Assigned roles for capable and competent driver and navigator
- Fully staffed and equipped pit team
Published Guides To Breast Cancerville
There’s a proliferation of guides out there waxing lyrical on the highs and lows of this destination Breast Cancerville. Before setting off, I flicked through some, skim read plenty and have others that were left with dog-eared pages and bookmarks galore.
There are those that rely heavily on pictures and diagrams and the ones that have indexes as thick as the content. I found out about the various routes I could take including detailed maps and was provided what I thought was a pretty thorough packing list. I’m definitely of the ‘more-is-more’ school of road trip research and found enough pearls of wisdom to string my own necklace. In hindsight though, they were all a bit light on in the ‘getting you home portion’ of the trip.
Travellers to Breast Cancerville are generally fortunate with the care and support available (I’m sure there are exceptions). It’s information overload at times in terms of what information is passed on to you during the ‘active treatment’ part of your road trip (Surgery/Chemo/Radiotherapy). Unfortunately, this is the equivalent of giving someone travel advice to help them get to the highlight of their itinerary but glossing over or completely ignoring the fact that the traveller actually needs to get back home!
What I found is that the active treatment phase is where the road ends in terms of support and resources (and often interest) and there’s minimal interest or guidance for what the traveller needs for the journey home! Sadly, there’s little acknowledgement that once you’ve seen the sights, exhausted the budget and are completely over your travel companions you want to GET.BACK.HOME.
I hate to state the obvious but for most of us, Breast Cancerville is a return journey!
Like a highlight reel from the weekly travel lift out destination, destination ‘Breast Cancerville’ hogs the limelight. It’s perfectly understandable that the attention is given to successfully completing treatment (cure or at least remission). Having endured whatever course of treatment recommended, being able to celebrate that you’ve reached that particular highpoint is totally understandable. We all want to be able to tell our loved ones that we’re cancer-free or in remission or in my case that I kicked Breast Cancers’ butt. This is the point at which we metaphorically want to pause to pose for any number of selfies from the summit or the beach or whatever metaphor you want to visualise as the point where you have clambered, crawled or sailed your way to in getting to ‘end of active treatment’.
The reality though is that like any road trip there is the return trip on the other side, the trip back home and it’s not downhill all the way.
You’ve seen the sights, crested the summit, bought the t-shirt and posted to social media. Then it dawns on you that you’re in no state to get yourself home. At the very least you’re exhausted but it doesn’t change the fact that you still have the return trip ahead of you. Unfortunately for those of us that have taken the road trip to Breast Cancerville your recovery (the return trip) is far less interesting. What do we find? There’s nowhere near the resources available to help you navigate your way. Your friends and family are still enjoying the shots from the summit and you naturally feel that no one really wants to hear your commentary on the return trip slideshow.
That slideshow though is sobering and instructive. There is a huge amount of wear and tear and in many cases there’s been a major amount of side of the road body repairs and parts replacement going on. The physical, psychological, emotional, spiritual and financial toll that it takes on ourselves and our loved ones doesn’t get much focus.
Having been on this road trip I can now trot out my very own holiday snaps and additions to the packing list that you can take on your own road trip. For supporters of those on their own road trip to Breast Cancerville, it will give you some appreciation of how you can position yourselves as a stellar rest stop of sorts for the friend or family member you are waving on their way. For those charged with creating the maps and crafting the encouraging signs to be waved along the way, it may be instructive. Optimistically, it would be great to think that those who pave the roads we travel (Governments and Health Departments) will see that some further investment is needed in infrastructure for the return trip.
Recounting my road trip will hopefully make others more comfortable sharing their stories of how they’ve inadvertently ended up in the ditch navigating their own road trip to Breast Cancerville. Struggles on the return journey (post-treatment) are real and often silent. The media for all their good work, love to revel in the glossy stories of hope, triumph and survival. The media bus doesn’t seem to travel beyond destination Breast Cancerville and news segments often focus on the prevailing weather conditions and outlook for this destination (genetic breakthroughs for example). There is merit to discussing these favourable winds, the advances in medical science that mean so fewer women (and men) will need to embark on this road trip. What I would love to see is that the media spend some time covering the return journey rather than just taking happy snaps and capturing the promising vistas.