My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Tuesday, March 11, 2008


Relationships can become difficult after a cancer diagnosis. It's not something that's talked about a lot, though.

At first after a cancer diagnosis, everyone is shocked and overwhelmed. We have to deal with the very real possibility of loss. People who love us are afraid we will die and they will lose us, and we are afraid we will die and lose everyone we love. It's assumed at first that as in the song "Live Like You Are Dying" the sentiments "I loved deeper and I spoke sweeter, and I gave forgiveness I'd been denying." will rule. And they do, at first. I received so much support and love from so many people, even strangers. I know I felt very loved and cherished and grateful. I appreciated the support from so many very much.

But some things about relationships got difficult over time.

For many of us diagnosed with cancer, though we appreciate the support and love we receive, at the same time we have a need to isolate ourselves a little bit more, especially at first. We are contemplating so much loss. We sometimes feel we need to start letting go a little bit "just in case", we feel safer that way. Sometimes I felt smothered by those who were well-meaning. I didn't always want to interact as much as everyone wanted me to interact, sometimes I needed more alone time.

Sometimes it seemed everyone wanted me to be strong and positive, as they felt that would save me. But sometimes it got difficult to put on the strong and positive act 24/7 when I was around people, though I felt I had to do it to reassure them. One cancer patient said "I don't want to smile any more. I don't have the energy to be positive and strong all the time when I'm around people."

Sometimes people didn't know what to say to me. Since cancer was the topic, they told me countless stories about family members and friends they had lost to cancer...they made me feel vulnerable. Other people were afraid...if it happened to me it could happen to them. I scared them so much that they put distance between us...I made them feel vulnerable.

Some thought that in light of my diagnosis we should have more family gatherings. That was difficult. And I became very aware of all of the cameras taken out and the pictures and videos taken of me to document my life "just in case" at family events.

Some wanted to socialize more, talk more, visit more, become closer. But what I really craved after awhile were the normal "before cancer" relationships that were less intense, less needy, that didn't have new expectations. And the relationships I most wanted to focus were my relationships at home, my relationships with my husband and kids.

I also talk to those who have supported loved ones diagnosed with cancer, and they have had a tough time too. After surgery and chemo are finished, they want life to go back to the before cancer normal too, but oftentimes that doesn't happen, at least not in a timely manner. Some of the most difficult times for cancer patients emotionally are after surgery and chemo are completed, but by then those who have supported us are needing their own support. They've supported us to the point of exhaustion and need a break. They expect us to be recovered and able to contribute to the relationships in the way we used to and are disappointed sometimes when we can't. They want the old "normal" too. Then there's the stress of lost income and medical bills and altered roles in the family. Values change, priorities change, roles change, finances change, physical abilities change. So much changes.

If you ever spend time in a crowd of cancer survivors, you'll learn that some relationships don't survive a cancer diagnosis. Some relationships that were dysfunctional before cancer become even more dysfunctional after. Some marriages don't survive, some romantic relationships don't survive, some family relationships don't survive, some friendships don't survive. Sometimes the ones that do survive are often forever changed, some are damaged, some are changed for the better.

Cancer leaves nothing untouched, nothing in our lives is left unaffected.


Graham Davies said...

As another PMP survivor, I can identify with a great deal that you say, Carolyn. Looking back on the start of my diagnosis, I first felt that I wanted to keep it to myself, but I told my close family and a few friends, who kept saying things such as “Well, it’s probably just a tumour and not malignant”. But my (correct) guess was that it probably was cancer – which was only confirmed 100% after surgery. At that point I felt the need to tell everybody about it. Then I was overwhelmed with much-needed support. Most of all I appreciated friends who were long-term cancer survivors and those who offered their prayers.

I am a robust person, but I surprised myself by my calm reaction to being a told I had cancer. Initially, my wife and I were told that I probably had only months to live. We both reacted in much the same way. “I’ll prove you wrong” was my reaction to this prognosis, and my wife began to search the Web (finding your site among many others) for case studies that promised a more optimistic outcome, and then things did not look so bad.

My oncologist has always been quite upbeat about my future, and the consultant surgeon who now keeps an eye on me is constantly reassuring. Two years ago this month I had surgery. Today I feel fitter than I have done for many years. My golf handicap has even improved and I went to Austria for two weeks in January, where I surprised myself at my improved skiing skills.

I occasionally wonder how long I have to go, but most of the time I just put my disease out of my mind. As for relationships with my friends and family, I can only say that they are better than ever.

One thing I don’t have to worry about here in the UK is medical bills. Our national health service is sometimes creaky, but so far I have not had to spend one penny on my treatment – and I am lucky to live just 30 miles from one of the two excellent PMP specialist hospitals in the UK. As a pensioner (I am approaching 66) I have not lost income either. I have a generous pension from my last employer, topped up by a private pension and the UK state pension – and pensions just get paid whatever your circumstances.

My full story is here:

Carolyn Langlie-Lesnik RN BSN said...

Hi Graham!

Congrats on your almost 2 years! I agree with you, I appreciated the prayers, and the people who have been the most help to me on a personal level are other cancer survivors. We understand each other and have many of the same perspectives and all belong to a common new culture, in a sense. I always feel understood and part of a kind of new family when I am around other cancer survivors.

I'm glad you are doing so well! Stay in touch! You are a very inspiring person.