October was a busy month - and one full of cancer related appearances and presentations for me. Many survivors have commented about If I Knew Then What I Know Now and in particular they want to talk with me about the chapter called Half Past Cancer. A few pages from that Chapter follow ....I would love to hear your comments



Half-Past Cancer – page 156

W hen Lessons Learned Upside the Head was published I received a considerable amount of feedback on my chapter called “When Someone You Love Has Cancer.” This particular chapter had been helpful to readers and I was pleased to hear so many personal stories with examples of just how helpful it had been. A number of readers suggested additions and changes if I ever updated the chapter, and you will see many of your suggestions here.
Since my first diagnosis, and certainly confirmed by my second,
I feel I am living at a time I call half-past cancer. Not quite in that dreaded cancer world, but not out of it either. Survivors can relate to the fear that comes with every lump, every bump, every skin discolouration and every call back for one more test. It is not a case of being negative or a hypochondriac. It is our reality. It is what it is.
These are the lessons I have learned from living it myself and from listening to the experiences of others. I still make mistakes but I learn as I go.

Take time to find the right words when the cancer cloud hangs over someone you love. With my breast cancer recurrence I listened carefully for the words that would come my way and, like the first time, while many made sure their words were positive, others could not wait to give me their advice – and it wasn’t pretty. Almost without exception, this advice came from individuals who had not experienced cancer personally. Comments like, “I bet you are sorry you didn’t get them to remove your breast the first time you had cancer” and “I hope you will make them give you chemotherapy this time. You probably should have had chemo the first time” told me a few things about the individuals delivering these cutting words. First, they did not know what they were talking about; second, they knew even less about my particular diagnosis; and third, they hadn’t read this chapter in my last book or surely to God they would have chosen their words a bit more carefully! These comments came early in my recovery and I didn’t want to spend my time dealing with negative energy so I saved these conversations with these individuals until I felt stronger. The conversations have since taken place and we remain friends. Humour helped me approach how I had been hurt or angry and without exception we all learned a bit from each other during the exchange. We laughed together, and yes, we cried too.
Since my mastectomy a friend has told me more than once that I look “normal.” And there is an element of surprise in her voice when she says it. I suspect she means, “You look normal even though you only have one breast” but I haven’t had the courage to actually sit down and talk with her about this. The first time she said it, she wrapped it up with other words: “You look great. I am so happy to see you looking happy and normal … so normal.” I said something in reply at the time, but I was hurt by her words and didn’t explore it enough to let her know that it was perhaps a poor choice of words.
Cancer is new to her and sometimes she speaks without thinking – not an excuse but a fact.
My friend Al Stiff found the right words – twice. He wrote to me following my first battle and sixteen years later he wrote again. This time he included a letter I had sent to him many years ago in case I had forgotten him. I had not. His letter was longer and he took the time to suggest I “get on with it. Your fight will inspire many many others and perhaps that is why you have been called upon once again.
I want to have another shot at saying I knew she had it in her.” Al ended his letter saying, “Look in the mirror, Carol Ann. There is a winner in there.” His letter arrived as I was arriving home from the hospital and could not have been more timely.
There are no magic words to use. There is no right time to say what you feel or to ask what you need to know. I work on this everyday with all of the people I know who are living under the cancer umbrella. I don’t always say the right thing and I pretty much always know when I have said the wrong thing. I try to make sure I don’t repeat my mistakes. It is a work in progress for everyone. The main thing is to be aware of what you say and admit, to yourself if you can’t admit it out loud, that maybe you could say it better the next time. And remember too that often silence is what is needed rather than any words at all. The quality of quiet is undervalued at times like this.
The need to Listen – be quiet and listen is a skill that applies to life in general, not only to the cancer world. When I faced breast cancer a second time I received calls from many women in the same situation. Most were great listeners and I often moved forward in my healing with their help and guidance. Some, though, were not listening at all – and to this day I cannot understand why anyone would call a cancer patient only days after surgery to ask, “How are you doing?” but then to immediately interrupt and tell their own story, including why their recurrence was far more serious than mine. To be frank, I didn’t care about their history at that time and did a bit of interrupting myself to let them know I was having trouble helping them feel better at the moment. To see if I could shut them up, I would sometimes interject with a bit of humour, “Could we back up and make this about me for a bit longer?” It usually worked.
I have had people suggest that Lose the negative energy should be softened to Lose the negative energy when it is appropriate to do so and I agree. It is not realistic to think we can, or should, be positive all the time. Believe me, for the first few months of 2008 when I went from diagnosis to surgery to recovery I had many a negative thought. I had my own pity parties when I needed them, I felt sorry for myself when I wanted to and I allowed myself to revisit my own negative thoughts, so I could deal with them. Would this recurrence kill me? Why me? Is there a strike three ahead of me? These are all negative thoughts, but confronting them and dealing with them at the time is better than pushing them aside or under the rug, pretending they don’t exist.
I have a different view on buying time now. It took a recurrence for me to see that to Buy time when you have the opportunity to do so is a good rule to follow and in my case it was pretty clear-cut – pun intended. I didn’t have to have a mastectomy but having the mastectomy has, most likely, bought me more time in this world. I will take it – purchased or otherwise.
Understand the initial flurry of visits, phone calls and mail will end. When we hear that a loved one has been diagnosed with cancer, or when we hear of any terminal illness, we tend to rush to their side and hopefully make ourselves useful in some way. I sometimes think we do this as much for ourselves as for the patient. We need to give. We need to feel useful. We need to give back. All of this is good. However, equally as important is the timing of our attention to the loved one now living with cancer, or living as a survivor.
Feeling part of the real world, whatever that is, can be difficult when cancer slows you down or stops someone you love in their tracks. As a survivor, when I saw the world going on during the days immediately following my surgery I couldn’t help but feel that everyone was moving on without me. I lost a couple of speaking engagements because the words “she has cancer again” had spread through the company I was to address and because the company did not want to have cancer at the podium, I was replaced. I get that – it happens – it makes me sad but I understand better the second time that it does happen. Corporations move too quickly sometimes and don’t stop to evaluate what they are doing to the individual. I did not have cancer; it was gone. I was, and am, the same person I was when they first hired me to speak at their annual conference.
To give credit, and in case some recognize their company in my words, they did listen to me when I felt strong enough and well enough to talk with them about this. They hired me again and all was forgiven. I think they learned from the exchange and I feel good about that.
Often cancer survivors have to take the establishment on even though it should not be necessary. What helped me in dealing with all of this was that some of my friends did understand that some of the interest in me following my cancer had passed and they made sure they continued to be in my life. One corporate friend offered a listening ear when I wanted to discuss my feelings about how some were, once again, seeing me under the cancer cloud, and he helped me with my plan to revisit a job I had lost. He jokingly said I should split my speaker’s fee with him but I explained that my first paycheque following cancer had been spent on shoes. I think he was joking …


....continued on page 160 of If I Knew Then What I Know Now