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.

 

Advertisements

15 thoughts on “The Butterfly Effect aka The Unspoken Impact of Life-Threatening Illness

  1. Pingback: BBQ: Tracy from FEC-This « everyday gurus

  2. Tracy I find your post truly inspiring.Happy to know you are continuing to do better.I can relate to what your son is going through as my Mom was diagnosed with breast cancer three years ago and it has since returned in a brain tumor and lung cancer.She continues to fight this battle for now.Its a very difficult journey and changes your life forever.I wish you and your son all the best.

    Like

    • Thank you Roxanne. It is difficult to explain what cancer does to other people around the patient. Having been the daughter of a patient much like you, the patient myself (I hope with all my heart this will never be you) and a patient and Mom to a lad who has seen two years of his life consumed by this (he was too young to remember what happened to his Grandmother) I gained a range of perspectives and you’re right, life has been changed forever for us all. I am sorry your Mom is dealing with mets and I’m sorry that you are both faced with this journey. It is incredibly difficult and takes every ounce of strength, courage and compassion we have. I send wishes for your Mom to keep up her fight and love and hugs for you both.

      Like

  3. This disease has tentacles, as my friend, Nancy told me. She was a new mom when she was diagnosed 10 years ago.

    I am so glad that your son opened up about his suffering and is getting help. I’m so sorry he suffered the way he did.

    Like

    • Yes. Tentacles is a good description, like a vampire squid. My son is a sensitive soul, attuned to the suffering of others. It makes him a decent human being but also comes with huge personal cost. I hope that with care, love and a period of stability for us both we can overcome this new monster.

      Like

  4. I’m so sorry your son is having a rough time, but it’s great that you can talk things through. I think that this experience, although it’s traumatizing at the moment, will make our children stronger, more compassionate human beings in the future. And they will truly appreciate the sweet moments in life having seen the other side. I deal with adults daily who whine about the most trivial things, and I think to myself “You must never have faced a real problem in your life.”

    Happiness and love to you both:)

    Like

    • I have thought a lot about your comment, back to my teens and early adult life. I did not deal with the trauma well (thought I could throw myself into work and ignore it). I created a fortress around myself because losing people scared me. Over time I realise it has made me more compassionate, more focused on the sanctity of life and more grateful for the people around me. I agree, there are some people who complain about the most trivial things and the reality is that life is far too short to waste on such nonsense. Sending much love xoxox

      Like

  5. A wonderful piece of writing Tracy. I can only reiterate what Maurice has said as he seems to have covered this extremely well. With love as always. Dad xxx

    Like

    • Thanks Dad. I have my moments, some better and more lucid than others. You and I both know what it’s like to play multiple roles around the cancer patient. I will never be able to thank you enough for being my rock during the time that I was the patient. And I hope never to do that to you again. We have both done this too many times already. Love always, tracy xxx

      Like

  6. You know the old saying, “Time heals all wounds.” It is remarkably accurate, in as much as any generalization can be. From a physical perspective I imagine you’ve moved a long distance from where you were when you were in the middle of those infusions. But it’s only a relative change. No doubt there’s still very far to go.
    The first healings happen relatively quickly. Some things regenerate fairly quickly. Other things take longer. No doubt you still have a fair bit of stiffness around the joints and can expect that to continue for some time. Most changes happen very slowly and are only noticeable after an appreciable period of time has passed. From time to time you find yourself thinking of a previous version of you. You touch your elbow, perhaps, and notice that it’s not near as sore; not near as knotted up as it was a month ago. Perhaps a smile crosses your face with the realization that you’ve definitely made one step forward. Perhaps you find yourself after climbing two flights of stairs and realize that you CAN continue on without a rest–something you could never have done in May. Another smile; another step forward.
    And so it goes.
    The last wounds to heal will be ones that no one but you can really see at all. A dislike of hospitals. A fear of needles, A broken heart. Those are deep wounds, far deeper than could have been made with any sword; so deep that the extent of the damage can really only be known by you. But, as you have already discovered and pointed out, you are resilient. Healing is happening there too. Just as regular exercise and care helps the visible woulds along, so, too, with these ones. Some time in the future, when the time is right, you will also be able to probe those sensitive spots and discover, to your delight that the pain there is gone too. Another step.
    And what a fine day that will be.

    Like

    • I find your words of wisdom, insights, kindness and support of huge comfort Maurice. You are an inspiration in so many ways. The physical wounds have healed quickly (48 hours for the recent set of cuts and only a month for the deeper wounds.) Considering that involved various implements and having an abdomen filled with CO2 to separate the top layers from the organs beneath, I think the physical body is amazing. The psyche is a stranger thing. Sometimes it seems the wounds have closed, scabs have fallen off and just a few scars remain. Then out of the blue tiny little things act as triggers and the wounds spring open again. I suppose that means they weren’t properly closed and it’s just a matter of time because everything heals at different rates. I can heal myself even if it takes a while. I wish there was some similar means for me to heal the others who have suffered because of my illness

      Like

  7. Thank you for this thoughtful and thought provoking post. I can relate to it because my mom was diagnosed with cancer (melanoma) when I was 18 and died only 12 months later. It’s long ago now, but still recall it all like yesterday. I am happy that today’s treatments are so much better, but unhappy about the fact that people still react much the same way when reminded that anyone, even they themselves, can get a cancer diagnosis. Much more awareness and support is needed.

    Like

    • I am sorry that this horrible disease robbed you of your Mom and everything that entails. The time we spend trying to cope with a loved one’s critical illness knowing we are past the point of return. The time we spend trying to cope with grief and emptiness and the realisation that as long as we love other people we will also face heartache. All the years that follow and all the events that remind us one of the most important people in our lives has been taken far too soon. The treatments are better, or at least the treatment to deal with the side effects of treatment are much better. But most still seem to come with no promises. Life afterwards is different for everyone, the starkness of our mortality lingers in the shadows and cancer isn’t at all fussy who it takes. I echo your call for more awareness and much more support for everyone who is effected, it’s not just the patient who has to endure the treatment, uncertainty and fragility of life.

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s