The Butterfly Effect aka The Unspoken Impact of Life-Threatening Illness

I’ve been pondering this post for a while. It involves potentially difficult topics, significant others and the impact of my diagnosis on their lives. Shedding light on these often unspoken situations involves crossing boundaries into what happened/is happening to those people as a result of me developing cancer. There are questions of respect and privacy to consider.

Here in the UK there is minimal talk of how difficult it can be for those close to a cancer patient to deal with the words ‘cancer patient.’ The need for support is alluded to but support for exactly what is rarely verbalised. I’m not sure there is full disclosure of the extent of challenges  the people near a cancer patient may find themselves facing. Having been a person nearby on more than one occasion as well as being the patient and witnessing first-hand what happens to others I’m aware very aware of the potential repercussions. The cancer butterfly effect can be extensive and it includes life-threatening / life-inhibiting illness for family and friends who suddenly find themselves thrown into a world of chaos, uncertainty and fear.

The butterfly effect is part of chaos theory so linking it to the chaos of cancer doesn’t stretch the imagination too much. The theory suggests there are sensitive dependencies on initial conditions hence a small change to those initial conditions can have a huge effect somewhere else. In theory a butterfly flapping its wings outside my window might result in a hurricane off the coast of America in a few weeks time. Cancer is no small change hence its butterfly effect can and often does have devastating impacts elsewhere.

For teenagers and young adults the reality of a close relative or friend with cancer can be extremely difficult. At a point when life ought to be fun, carefree and exciting they are suddenly forced to confront  the fear associated with illness, surgery and treatment. They are also forced to consider the spectre of death. This is no way to spend such a formative part of our lives. I know because I was a teenager/young adult when my Aunt and my Mother developed cancer. I watched both go through many different, disabling and sometimes dehumanising treatments. I saw them both lose their lives and I came face to face with the violence of death when my Mother developed a pulmonary embolism. It was not peaceful. Seventeen years later the sights, sounds and smells are all still etched in my mind.  It was ten years before I could set foot in the hospital where my Mother spent her final day and even now I hate going back there.

My son has had to face similar trauma following my diagnosis. Fortunately I am not dead. Hopefully I am dying at the same rate as most other people – little by little over a period of at least another 30 years. Despite my son’s positivity, despite his seemingly mature approach and our well-reasoned suggestions that I would be fine, the cancer butterfly effect has taken a huge toll on him. He finds it difficult to come to terms with what he sees as the unfairness of it all. He asks “why you Mom?” He struggles to reconcile that “terrible things happen to kind people who don’t deserve it.” For over a year he has been plagued with nightmares, relentless images of suffering, mutilation and death.  He tells me he couldn’t cope with what happened to me but didn’t want to add to my worries. He tried pretending everything was normal when life for both of us was completely surreal.  After seeing him become desperately unhappy and withdrawn, referring him for counselling, witnessing his panic and hearing his concern that no-one would believe he is unwell, we finally found a Dr who understood what he’s been faced with. She diagnosed depression. My son won’t be able to reclaim the past two years of his life, or however long it takes to improve his mental health now his condition has been recognised.

Family members have little choice about their engagement with the cancer patient, particularly if they live in the same household. Even when they don’t it is almost impossible to avoid the trauma unless they rule the patient out of their lives entirely.  Friends have more freedom. Fortunately most friends don’t go AWOL, sadly some do.

One of my very best friends abandoned me completely. Despite knowing each other for two decades, sharing a whole range of experiences including having children, riding out good and bad times together in the past, this experience brought our friendship to an abrupt end. There was no discussion. There was no explanation. Seemingly there was no thought about the impact this desertion would have on me at a time when my whole life hung in the balance. Seemingly a long term relationship built on trust, respect, mutual support and loyalty only mattered while I was not a cancer patient. When I became a cancer patient it was OK to throw our friendship away.

I haven’t had chance to talk to this absent friend so I can only guess as to the reasons for walking away from what I thought of as a friendship that would last a lifetime. My guesses include a fear of my condition, being uncomfortable/repulsed/disturbed by the changes in my physical appearance (I was too but had no choice!), being unable to cope with a very able, independent friend who had become very sick and much less able for a period of time.  Other guesses include triggering unpleasant memories from the past, thinking I might become a burden or feeling inadequate/ill-equipped to deal with the prospect of serious illness and death.  I’ve spent the past year wondering what I did to deserve such treatment. Had our positions been reversed I wouldn’t have walked out on our friendship, even if I knew that being present meant entering a world of uncertainty, facing the prospect of death and the heartache that inevitably goes along with it. Perhaps I place more value on relationships than this friend did. Perhaps my absence friend can only commit while the weather is fine but when it’s monsoon season shipping out is the only option. Perhaps my friend is also suffering from depression. I don’t know because in spite of trying I haven’t been able to establish any meaningful dialogue and now, many months on, I have to conclude for my own sanity and future well being that this friend was just a long-term acquaintance, not the friend for life I thought I could trust and rely on.

This is just a snapshot of the butterfly effect that accompanies life-threatening illness. I suspect cancer is particularly difficult because in spite of various awareness campaigns the disease still strikes fear in most of us. Most of us know someone who didn’t make it. There is very little tangible support for people like my son. Fortunately he and I are close, we can talk about it and we are doing our best to work through all of it together. It will take time and we know there are no miracle solutions. As for my absent friend, I guess I’ll never know exactly what happened or have the opportunity to help work It through. I wish you happiness anyway.