Kathryn is one of our regular contributors. Her husband Greg was treated for adenoid cystic carcinoma not long after the loss of their daughter to cancer. I asked her if she had wisdom to share on how to deal with the suffering that cancer causes us. Here are her words.
The top illustration is of their happy place, their farm just out of Whangarei, rolling country dotted with native bush. There's one of the Parnell Rose Gardens, one of Greg fixing his car with his youngest son and of the Auckland Domain.
Once the jagged edges of shock and devastation settle a little, we all develop our own ways of coping with a cancer diagnosis and the harrowing journey that follows. Navigating our way through the long and tumultuous road of cancer affects us all differently. It is our own personal experience and as such we learn coping strategies that are unique to us.
I asked Greg to think about what helped him to cope during the time of his diagnosis, as well as the period of surgery and radiation therapy that followed. He struggled to recall much of that miserable time 12 months ago. It seems that often our greatest stresses in life get relegated to deep distant parts of our memory bank where gradually, over time they diminish a little bit though of course never completely. He did recall however, that during his dark post op days, it was the little things that meant the most. It sounds like an old cliché, but in this instance, for him, that’s really how it was. Small and sometimes inconsequential things that previously he may have taken for granted or overlooked the significance of. He remembers feeling a sense of relief at hearing my footsteps along the hospital corridor floor every morning and knowing that meant that he didn’t have to cope with the long, arduous day ahead alone. Other things too, visits from his kids, a new hospital room complete with a view. Being able to leave his hospital bed and have a walk around the ward. And, during the long nights when sleep eluded him, the realisation of just how precious his life had suddenly become.
During RT, he was grateful that for almost all of his treatment duration he felt able to get out and about and do things, as well as go for the odd jaunt around Auckland. We both appreciated that during this time he felt well enough to leave Domain Lodge and escape almost certain cabin fever by venturing outdoors every day to have a stroll through the Domain, and one day even an afternoon exploring the Parnell rose gardens and the pretty bays beyond.
It was appreciation to Maggie from the Whangarei Cancer society who organised us a room change at the lodge so we could sleep alongside each other again; it was appreciation of his medical team and all of those involved in his care. It was the deep contentment of being home on Friday. It was the relief when yet another week was ticked off and the finish line loomed nearer.
Though many days were far from smooth sailing, these things collectively contributed to tiny steps forward and helped us to cope with the day to day reality of being a cancer patient (and his wife) in another city and away from all that was familiar to us.
My brief was ten things that have helped us to cope. I’ve thought about this and talked to others I know that have been affected by cancer but I’ve only come up with 9! Maybe we can add to this list as a group …
- Having the love and support of family. For Greg and I, this has to be on top of the list. And indeed it came through often with everyone I spoke to. When we experience extreme stress, discomfort or anxiety, all we really want is the familiarity and comfort of our nearest and dearest. We want family and loved ones close by to be our voice and our advocate. We want reassurance and guidance from them. Often we also require emotional support, like quiet company at the bedside; or during procedures and appointments. Sometimes it can be a seemingly insignificant act of reaching out that can make a difference to a patient; like a hug or a hand squeeze when the time is right.
- Practical assistance from the wider family network, friends, work colleagues, neighbours. The call or visit that offers useful support, by way of taking care of tasks that need attention. Errands that need to be done; animals that need to be fed. The mail box that needs clearing. A home cooked meal delivered when you weren’t expecting it; a ride to an appointment or procedure so you don’t need to stress about the traffic or parking; your prescriptions being collected from the pharmacy, or a book from the library. Errands and incidentals. Little things mean a lot.
- Agencies such as the Cancer Society and in our case the Head and Neck Support Network are only a call or a message away. How humbling it is to know that people genuinely care about you and your experiences. It can be a comfort to share your story with others that have had the same or similar experiences, and from that a sense of camaraderie and companionship can follow.
- Being able to escape. It can be exhausting, overwhelming and depressing aboard the cancer train. Whilst Greg was undergoing treatment at Auckland Hospital we sought refuge at the Domain as often as we could. Sometimes we braved the traffic and ventured over the bridge to visit family and our dogs that were being cared for on the shore. Once we even caught the train to an unknown destination. A journey or even a gentle stroll around the block was the best medicine for body and mind. As well as that, it was helpful to have some time together to reconnect as a couple; cancer can place enormous stress on relationships. For some it is having a quiet and peaceful place to retreat to. A sanctuary when it all feels just too overwhelming. Everyone I spoke to told me that they had a special place of refuge. It was the beach, their garden, their own room or perhaps their own bed. It’s different for all of us.
- The internet. Knowledge. While sometimes Dr Google can cause more harm than good, nevertheless, having access to the internet during and after cancer treatment was incredibly helpful. At the touch of a button it links us to others globally who are experiencing or have experienced the same or similar. For some people there is a huge need to information gather, especially in the early days. Having access to the internet for info and for linking up with others is a big coping factor for some patients and their supporters.
- Having a plan. Unfortunately, we don’t all get this one, or sometimes perhaps we don’t feel in control of our plan, but for those of us that do, it can be motivating and empowering. Having some direction or a pathway forward and knowing that you, your carers and your health providers are all on the same page is a sound way to hold one’s own.
- Faith. We all have our own unique values and beliefs. For some of us, having a faith in a greater being or of an everlasting life is a comfort during times of uncertainty. It can sustain us and give us hope.
- Time. Thanks to Andrew for this one. He described feeling utterly wretched and miserable whilst undergoing treatment. It was difficult and almost impossible to look beyond the situation he was in. The days all merged together in an overwhelming blur. It was hard to imagine a time beyond where he was currently at. But over the following months and years, slowly he improved, became fit and well again and life has resumed almost as it was prior to his cancer diagnosis. So, endeavour to remember that things won’t always be as bad as they are today. Ride out the storm and hope that time will make things better.
- Alternative or complimentary treatments and therapies. Acupuncture, massage, reiki, herbal products and supplements. Whilst some patients prefer hospital only treatment, some feel that alternative regimes can work together with or alongside their conventional treatment. Not for everyone, but we all have the right to choose.
Coping is something that we learn and perhaps get better at with practice. I have lost count of the times over the last five years that this comment, which there is no response for, has been said: “I don’t know how you cope with what’s happened”. It’s not until we stand on the other side of the fence that we truly understand how soul destroying that statement is. Life doesn’t always offer us a choice, and some days we simply can’t cope or don’t cope. But mostly we try to, because we have to. We find ways and means that work for us. We get up in the morning and face another new day and, in the words of the infamous Dory from Nemo, we hold our head a little bit higher and we just keep swimming.