Warning: you definitely need a cuppa to accompany you as you read this longer post from me. It’s an essay I wrote in response to a request for submissions for a publication regarding helping people who have received a cancer diagnosis. I suspect that many people made practical suggestions (make dinner, walk the dog, change the batteries in the remote and so on) but I wanted to tune into the relationship side of things, so here’s my entry for your reading pleasure. ……
Forgive us when we switch tribes
By Rosemary Albone
Flipping through magazine stories or news articles online, we’re flooded with an edited version of events that happen in other people’s lives. We might love it, hate it, tolerate it and at times actively seek it out. At some point we are all voyeurs into other’s troubles and that distance gives us space to think, conject and decide how we react. That protective space is also a luxury that those who are the subject of our fascination don’t have. I’d like to explore the experience of being in that unprotected space and share my reflections regarding how people can help those of us there within this essay.
Stepping back in time in my story only permits us a very short distance; I’m still in an active stage of treatment for Breast cancer and haven’t yet heard those elusive words ‘ You’re all clear’, but I fully expect to. Does this make me an expert in terms advising you how to help? No, because actually no one is expert at that stuff and mostly because those of us with cancer are a contrary lot! You may decide to put this book down at this point and ask yourself why on earth you bothered but I’d urge you to keep reading, to keep seeking out an understanding of why we need you there for us.
A cancer diagnosis is something that I suspect everyone has thought about from some angle, even dare I say fantasised about in terms of ‘what if’. Don’t read that wrong and misinterpret that I mean you’d want cancer, I know that no one ever wants it but that we all have moments where we’d like to feel regarded with care by others and let’s face it, that sort of diagnosis triggers a response. When you hear of loved ones or acquaintances who have been given those immortal words, who hasn’t at some point wondered what they would do if it were them in that chair? I’ll freely admit that I’d thought about it, always devastated for those whom the conversation centred around and their nearest and dearest. I could easily and would regularly be brought to tears by both their actual context and the one that I imagined they were living. Projecting a diagnosis onto myself or a close family member, the tears would flow copiously and my thought pattern would travel down a bleak and arduous highway of despair. I knew at that point that I wouldn’t cope and that the very worst would surely and inevitably happen. I dreaded it.
And so my Oncologists words ‘I was right to be concerned about that suspicious area, your pathology results confirm that it is Breast cancer’ should if the predictions were true, have triggered that outpouring of emotion, tears, rage and despair. But they didn’t. I nodded, absorbed her words as best as I was able then started planning, mute in my acceptance of the diagnosis and compliant with the options laid before me. I started signing forms, accepting piles of information, noting down helpline numbers and wondering about the cost of future travel insurance. In that moment I’d morphed into someone with cancer. Someone I didn’t recognise.
How can you help? You can forgive us when we switch tribes. When we go from being one of you to one of us. You don’t belong in this tribe; we don’t want you here because that would mean that cancer has gripped more than one victim this time and we’re struggling to understand how we arrived here in the first place, our brains can’t compute you being here too. We actually need you to stay out of this tribe so that you can use your objectivity to research for us, to advocate, to care and to show us that our previously inhabited world still exists and wants us to return. As long as you are there, on the riverbank we have hope.
Switching tribes is a big deal. As we grow we absorb the culture that nurtures and shapes us and it gives us rules to live by. Break them and we know that there is a risk that we’ll be cast out. Cancer fast-tracks this process and whether we like it or not excludes us from our most comfortable place – the familiar. For a time we strive to return to you because that’s what we know and what makes life feel secure and safe, but a cancer diagnosis swallows you up into a large and powerful tribe that initially connects together simply through the existence of the omnipresent disease. It doesn’t discriminate and it’s random in its recruitment process.
After a while this new tribe begins to feel somewhat like home, somewhere familiar and place where other members get you instantly. Before you know it we’ve made the switch and left you somewhere back there wondering how easily we decamped and for a time, abandoned you preferring the company of our new tribe. It’s puzzling for you and for us.
You may hurting and bewilderingly recall that when the diagnosis came we had conversations about battling this together, teamwork, the power of us working collaboratively and you felt part of this new world because those promises, often uttered through tears and panic held hope in their veins and my goodness we needed something to hope for. Those conversations were also something solid in a very fluid landscape and solid represents control; something that we’d lost at that Oncologists appointment. So now not only has our diagnosis rocked your world but our tribal transfer has exposed your vulnerability even further and you’re wondering what to do, how to help? Forgive us.
Coping with and learning about cancer provides you with the ‘opportunity’ to learn a second or subsequent language. Perhaps that’s something you’ve always meant to do but not exactly in this context. However before you know it the bewildering acronyms and jargon that floated over your head in the early days leaving you feeling confused and out of touch as your learning curve stretched out above you is now your modus operandi. Talk to others in your new tribe and with only a few descriptors and labels your new peer understands not only your diagnosis, but your treatment plan, probable life chances, drug regime and side effect implications. It’s like a weird form of acceptance, you don’t have to describe all the things that a non-tribe member doesn’t understand and for a time that’s so refreshing; you don’t have to use your precious energy levels to over-function. Until you’ve been there you can’t know how tiring repeating your story is. Sharing your story in shorthand tribe dialogue is a weird form of welcome relief.
Finding ourselves in a tribe that finds it easier to talk about cancer means that we’ve been able to have some conversations that are free of emotion. You may not have and never will because your unique position- supporting someone with cancer hopefully means that a) you will not receive a diagnosis yourself but b) you may never be able to think about ours in an unemotional way. Exploring the practical, the statistical and the experiential means that we’ve also been in a place where it’s perfectly possible to distance ourselves from the high adrenalin of feelings and talk as if we’ve disconnected from the horror and pain. Sit in any cancer hospital waiting area or ward and you’ll overhear conversations that might strike you as cold, unfeeling and even callous. Understand that those conversations help us cope on an emotional level because the heat is taken out of them by our fellow tribesmen and tribeswomen. Their experiences, understanding and awareness is like balm.
One of the downsides of this is that these conversations have given us time to absorb ideas and information and to some extent get used to new and different considerations so again forgive us if we blurt out crazy suggestions or deep thoughts seemingly out of the blue. They’re not of course, it’s just that we’ve been mulling over them for a while and forgotten that your tribe is still not as advanced in all this as ours. We’re not trying to shock you but to help you help us. We also like having these conversations because our tribal family don’t let pain reflect in their eyes regarding our situation as it often does in yours; sometimes we can’t face that. Forgive us for accessing this coping mechanism.
Don’t be jealous of these new friendships even though they may appear to be very intense and exclusive, almost as if we have a crush on our new cancer tribe buddies, they are a necessary part of our treatment plan permitting our brains to clear a space to process what’s going on and access the right coping strategy for now. You are still part of ‘now’ although you may feel your role has diminished but it hasn’t, we’ll be relying on you in the future, so view this time as a space for you to also recharge. We know you’re there and we mean to include you but sometimes we forget that you need support too.
Think of our relationship as being on one of those extendable dog leads and you may well need to cut us some slack. We need to wander a distance away from you, to test our independence whilst still connected but we also need to know that if we wander too far your care, love and concern for our well-being means that a tug on the lead is actually your way of telling us to return to the safe place by your side. At times the lead may feel a very tenuous connection and one that’s not as robust as before, but don’t worry, it’s all we both need.
Added to the mix is the timeline that those of us in this new and shockingly ever increasing tribe are now rocking to. We start to plan events and activities around treatments, side effects, medication, good days, bad days, days where we have an appetite and days that we want to do something just for the hell of it. There’s often no sense or order to what we do, why and when and we expect you to get this, to permit our new approach to life and accept it without question. It’s a big ask, generally we know that but there are of course days that we simply expect you to comply without questioning us. In essence we want it all and who is going to argue with us?
But that leads us to the days when our way does not work in harmony with your preferred way. Some relationships will therefore need repairing so that everyone can go forward without the burden of a tense and uncomfortable conversation or situation weighing us down. Remember that however unpleasant we get (and we will and we might sometimes cheekily blame it on the cancer rather than own up to the responsibility ourselves!) we need to reconnect with you after a sense of disconnection. How can you help? Repair rather than apologize- ask ‘How can tomorrow be better?’ Ask us what we need- not in a practical sense, but in ways that make this new and unchartered territory of cancer form a strong relationship with enough room for us each to evolve. Listen without judgement and suggest without point scoring.
We all make assumptions in relationships and one that involves cancer is no different. Do you recall me mentioning how voyeuristic we can be in other people’s lives and deciding what they are coping with without ever really knowing for sure? Perhaps one of the greatest sources of help and how you can offer this is to make some overt assumptions about your relationships with your cancer patient.
They might look something like this:
- We are both equally responsible for tricky and tense conversations and situations we find ourselves in right now.
- Our relationship is important to us both. It might get tested at times (like now) but we both want to stay hooked in there.
- We are both capable of give and take, making unconditional compromises that support the other
- Tomorrow gives us a new chance to improve things, let’s not mess that up.
- We may not be ‘in control’ of cancer but we can control how we are together
Whatever your assumptions might look like, move them from being unspoken assumptions to shared explicit aims. Put the kettle on, make tea, slice a cake and talk about them.
At the start of any relationship no one comes up with the bright idea of exploring together ‘what shall we do if…………..’ (Unless it’s a pre-nup!). Dealing with cancer within a relationship is like gaining a sudden adulterous uninvited new partner; it changes the dynamics, tests your values and exposes weak areas. Two’s company and three’s a crowd comes to mind. Use the strength of your pre-cancer relationship to adjust to the new because striving to return to the old is simply not going to happen. Accept that change has occurred however resistant to it you are. Pick your battles wisely.
In life we often do have allegiance to more than one tribe as we journey through and switching is a conscious decision. However switching tribes as a cancer patient is not about abandoning a set of beliefs or support systems to which we feel closely aligned. Our value base remains generally intact but we’ve realised that there is a bigger tribe to which we all belong; it’s called a forgiving humanity. Thank you for helping by forgiving.
Rosemary was diagnosed with Breast Cancer in April 2015 following regular screening, with no family history of the disease. She has spent her working life supporting children, families and teachers in the art of gentle and positive communication. In tandem with her professional work she has volunteered in a range of situations including helping at her local hospice where she was privileged to share in many warm and wonderful conversations with cancer patients.
Her experience into and through the cancersphere has added to her professional and personal awareness of the centrality of relationships. Writing about the experience proved to have its own healing powers and her blog can be found at https://cystaract.wordpress.com
Rosemary is 53, lives with her husband in the United Kingdom (no she doesn’t know the Queen) and has one son, Ben aged 30.