Having cancer is tough but it is not helped by the mindless advice of concerned friends, says Marie Carberry
Early on in my cancer diagnosis I received a phone call from an acquaintance and someone I hadn't heard from in a long time. She was distressed, distraught even. I knew this because as soon as I said "Hello" she burst into tears, her sobs getting louder each time I repeated "Hello". Eventually, she was able to bring herself to tell me that she was devastated to hear about my illness and she was just ringing to send me "positive vibes".
"Can you feel them?" she whispered after a few minutes' silence, during which I banged the telephone handset off the table to make sure I hadn't lost contact. The answer was an emphatic NO! I couldn't feel those positive vibes zinging down the telephone wires and into the hole in my chest where my breast used to be. Not a fizzle. Nothing. Nada.
I could feel a migraine coming on though. It had started at my temple and was quickly travelling down my face and into my jaw, which had tightened considerably. So concerned was she to make sure I was receiving her positive vibes, she failed to notice my negative ones. She continued: "This is your journey and your battle, which only you can do, but the best way to beat this thing is to stay positive."
I was thinking to myself how was it possible to always stay positive when cancer had suddenly turned my life upside down, but she had the answer for that as well. "Look on the bright side," she said. "This will enhance your life. Sometimes these things happen for a reason but, at the end, you will come out a better person."
Far from feeling positive, I now felt that it was my own fault for getting cancer. My mouth said, "Must do lunch. Byeeee," but my head was shouting, "For f**k sake, go away!"
She wasn't the only one. I had offers to have my chakras realigned and my house feng shui-ed which, I was assured, would help me "stay positive". I was given self-help books and links to websites that promoted positive thinking. I received get well cards that were signed off with 'Stay Positive' written in large capitals, accompanied by a couple of exclamation marks.
The phrase was bandied about so much it became a mantra in my head and I grew to hate it. The pressure to keep the bright side out was suffocating and burdensome. It's not that I was bawling my eyes out every five minutes, or had sunk into a hole of depression, but sometimes I did feel like doing both of these things. However, as soon as I exhibited any desire to rant and rave, it seemed there would always be someone there to remind me: "You MUST stay positive." (And it wasn't you, Mother, just in case you are reading this).
"Is there something wrong with me that I feel like this?" I asked my breast-care nurse. "Every time someone says, 'You must stay positive' I feel like reacting the same way Linda Blair did in The Exorcist – spinning my head around and throwing up." She laughed. "Remember, sometimes people don't know what to say, and when they are asking you to stay positive, it's often to comfort them rather than you."
My medical team never once said to me to "remain positive". That is not to say they weren't holistic in their approach, but they also have to deal in the cold reality of this invasive disease. I remember undergoing a breast ultrasound after being told there was a problem with the biopsy that had been taken from under my arm.
Gavin, the radiologist, carried out the procedure and, when he spotted the tumour, he let me know quietly what it was. He then put his hand on my shoulder. "This is a lot to deal with," was all he said.
It was all that was required in the circumstances. It wasn't a death sentence, but it wasn't anything to be jumping up and down with joy about either.
Last week, Irish psychologists warned that cancer patients who try to be too positive can end up feeling even more miserable.
According to a new guide from the Psychological Society Of Ireland: "Facing up to uncertainty and insecurity takes courage and may be painful, but can be a more helpful way to manage the ups and downs of a cancer diagnosis."
Dr Paul D'Alton is head of the department of psycho-oncology at St Vincent's Hospital in Dublin, and he advises that the guide should be of use to family, friends or work colleagues who know someone with cancer.
"We've summarised it in 10 tips to offer help at this really challenging time, probably one of the most difficult times in any individual's life."
Perhaps the two most important things to remember are that "emotions will not follow in neat stages and that overemphasising being positive can be an additional burden to the person diagnosed with cancer".
EIGHT OTHER TIPS:
> Don't be afraid to say: "I don't know what to say." Learn to tolerate your own emotional discomfort. Learn to just listen.
I found the best help involved someone doing something practical for me. An offer to pick the kids up from school or drive me to hospital was far more beneficial than sending positive vibes down the phone or links to hippy-dippy websites that advised coffee enemas as a treatment.
> Don't expect emotions to progress in neat stages. This experience will unfold as a process, and there will be many ups and downs where their needs change on a day-to-day (or sometimes hour-to-hour) basis.
Don't treat the cancer patient with kid gloves. There will be many a time when they will need to let off steam. If this involves turning the air blue with swear words then so be it.
> Avoid giving advice. This can be unhelpful and make people feel they should be "doing a better job" at coping than they are. Advising people to keep positive and battle on is not helpful for everyone.
This in itself is a helpful piece of advice that liberates the cancer patient from the onerous duty of always feeling obliged to put their best foot forward.
> Try not to personalise. If you're experiencing conflict, try to remember that your partner, friend or family member may be angry at the
situation and not you. We tend to take our frustration out on our nearest and dearest.
My other half and I had some humdingers during my chemotherapy. Steroids are a necessary part of treatment, but they can send you madder than a March hare. The compulsion to clean the house became all-consuming. All that mattered was that my windows glistened and the tins in the cupboard were arranged alphabetically. Once the steroids wore off I crashed. He got the blame for that too.
> Eat well, exercise and get enough sleep. By taking care of yourself you're in a much better position to care for others.
Examine your diet and, particularly in the first two years of recovery, try to avoid processed food and refined sugar. It may sound like a cliche, but lots of exercise will help you sleep.
> Don't be afraid to ask for help, or say 'no' when you need to.
Sometimes anxiety can hit you out of the blue and be overwhelming. The Arc Cancer Support Centre, Little Way Cancer Support and support services affiliated to the Irish Cancer Society offer a free counselling service to cancer patients around the country. If you're finding chemotherapy tough going, ask people not to ring you when a text will suffice. Cancer treatment can be debilitating and it is best not to wear yourself out talking.
> Allow yourself permission to be who you are in this moment.
Cancer patients are aware that family and friends often put up a strong front for them, which may be pointless and even hurtful to the patient. Honesty and laughter can sometimes be better than a stoic resolve not to discuss the illness.
> Try to focus on today, not yesterday or the future.
This is probably the best piece of advice that I've been given. Focus on the moment. That is where you are now. This is what matters.
If you need to talk to a specialist nurse call the National Cancer Helpline on 1800 200 700.