Caring for someone with cancer!

Caring for someone with cancer

Here are some comments, based on experience, of people who have cared for loved ones who have been diagnosed and then treated for cancer.

If you have had experiences that you think will help others, please email me at jchamberlain@fightingcancer.com

Jonathan's Comments

Dr Norm Michell:(book mark below)

Jonathan’s comments:

When I started writing Fighting Cancer - A Survival Guide I wanted at one and the same time to reach out to different communities of reader. I wanted to reach out to people who had never given a thought to cancer and how it might affect their lives. I wanted to reach out to people who had cancer and say to them: try this, try that...

But, there was one community that I felt needed to be talked to in a very special way: the community of people who are caring for loved ones who have cancer. This after all was the community that I had belonged to. This was the community that I could talk to from direct personal experience.

This conflict of who I was addressing my book to led me to write three different forewords.

In my foreword to carers I gave some advice, the brunt of which can be summarised thus:

Your relationship with the person with cancer is vital. Don't let disagreements over how to respond to the disease and/or the treatments get in the way.

This may seem obvious but I think it may be more obvious to women carers than to men. This is a point of view that I have come to since the book was published.

Men and women respond to problems differently - or at least, so I am told by Deborah Tannen, author of: `You Just Don't Understand'.

If I've got it right, women like to explore their feelings about a problem - and need to go through this stage before they can focus on deciding what to do about it. Men, on the other hand, like to get straight to a decision.

This gender difference - if there is a difference - is likely to cause immediate problems of communication between partners if one of them has a cancer. It may be advisable then to become more self-aware, jointly, about the processes of communication between the carer and the person with cancer [I don't like the terms `cancer patient' or `cancer victim'!]. This means it would make sense to read a book such as Dr Tannen's and to explore how far the concerns she writes about are concerns within your own particular relationship.

Let me repeat myself: If you are caring for someone with cancer then your relationship needs to be nurtured. You need together to become more aware of the dynamics of your relationship so that the negative processes can be minimised (eliminated is probably too much to hope for) and the positive processes maximised.

I think it is fair to say that the person with cancer should be allowed to call the shots - well, most of them. This can be a very painful process, especially if the person with cancer is doing things that you feel are unwise - or not doing things that you think would be beneficial.

The second piece of advice that I have is that the person with cancer should be encouraged to contemplate how he/she feels the cancer should be treated. What is the gut feeling that arises at three o'clock in the morning. I have a great respect for the power of the promptings of the unconscious which are also called intuitions. A year before she was diagnosed with cancer, Bernadette, my wife, started to get very nervous about life insurance - and got very edgy when I insured my life but not hers. In the days leading up to my daughter's operation, Bernadette had deep forebodings - a powerful, if unfocused, uneasiness that something would go wrong. Something did go wrong.

I believe that our unconscious mind is wise and reflects on our situation. I am constantly amazed as a writer how often I am brought to revise my work because, days, weeks, even months after I have written something the unconscious brings it back to the surface of the mind and I see how it must be changed.

My feeling is that in the case of cancer treatment we rush too quickly into taking an attitude about what we want to do about it. Our doctors provoke this. Suddenly, the moment we are faced with a positive diagnosis there seems to be tremendous pressure to make the `right decision'.

But how do we make decisions?

One way is to rely on authority. My oncologist says this. My oncologist says that. I was faced with this experience when I was talking to one woman who was being treated for cancer. I suggested that she look into the idea of treating her cancer with a strong negative direct current magnetic bed. She said she would mention this to her oncologist. Now, the reult is a foregone conclusion: the oncologist is going to laugh at the idea - unless he/she has read Robert O Becker's book: Cross Currents - but almost certainly the oncologist knows nothing about the effects of such a magnetic bed.

Nevertheless, this is a comfortable way to handle the situation for many people - someone is taking the very best care of them.

It's not wrong to handle the decision-making in this way - though it may lead to conflict if you, the carer, have strong feelings that the oncologist's authority is absolute and should not be questioned in any way - the doctor knows best - while the patient doesn't have such a strong need to genuflect to authority. Or of course, you the carer, may feel strongly that there are other ways to proceed while the person with the cancer is adamant that he/she wants to do what the doctor advises.

Be aware that this is a very likely focus of disagreement.

Another way to arrive at a decision is to ask the question: what do I want to do about this cancer inside me? The doctor says operate and radiate and undergo chemotherapy. Some books say that vitamins and diets are the way to go. Others say I might get well just be doing nothing. How do I want to proceed? Let me create silence inside me and see what thoughts bubble to the surface.

Some people like a decision to be hard and definitive. Surgery and radiation can seem attractive because they seem so absolute and hard edged. Once they're done, they're done. You know where you are.

Others prefer to contemplate the illness, to embrace it even, to place it within the context of the health of their whole body. They might think: Let's say I cut it out, what then? It may come back. Then what will I do? No-one knows why this cancer has arisen in the first place. Who can say that whatever caused it first time round won't cause another tumour? It's better to try and deal with the ecology of my body.

Others find the whole thing just too exhausting and prefer not to think about it.

It is my belief that there are two absolutes:

i. There is no right decision that is right for everyone.

ii. There is no right way to come to a decision that is right for everyone.

Whatever a person chooses to do with a positive frame of mind - optimistic of a cure - is right for them.

Whatever a person agrees to go along with but in a negative frame of mind is wrong for them.

However, at the end of the day, no matter what the decision is and how it was arrived at, I think the characteristics of a decision that will work out best for the person with cancer are:

i. the person with cancer feels in control (and feels free to change his/her mind at any moment about what is happening).

ii the person with cancer is secure that those closest to him/her - even if they don't approve of the decision - will be there when the need is greatest.

And what about yourself?

Caring for someone with cancer is a tough job. It is tough psychologically and emotionally. Don't forget to take care of yourself.

Dr. Norm Mitchell: Ruminations of a Widower(X)

Yes, I too am among the thousands of survivors who have lost a loved one to the ravages of cancer. I too have walked hand in hand with my partner in life to the far end of the "Valley of Death". I know what it is to walk the lonely road home by myself. When I returned to what I had once called my mountain top I carried on my slumped shoulders the heavy load of knowing I must now learn to live alone. It took me many, many months before I could look back and see through the mist that shrouds that valley, but when I at last could, I saw that with the pain of losing my beloved wife and the mother of our two sons, also had come a very special gift. In the seven and a half years she had endured this dreaded disease called cancer, God had given me the special opportunity of showing her my love in ways I would never have had found otherwise. We must all succumb to death someday, but not all of us have the opportunity to experience that special kind of love that can be bestowed upon us by our family and friends that seems to only come in time of ones failing health and pending death.

As a physician myself I had never truly understood the pain of dying, always being more aware of the person dying than of those around them. It took my own experience and working with Hospice to bring me full circle, so to speak. Its intensity and its helplessness is felt more by those of us who are the survivors than by those who pass on I believe. Certainly it lasts much longer. We are left to dig down deep within ourselves to find the spiritual strength that will help us go on living a productive life without that special person. We must learn not to dwell on our loss but to give thanks for the time we were given to share life with that special person, be it a child a husband or wife, a brother or sister, a parent or grand parent or even that special friend. When we can truly look back and only see the good things in our lives spent together than we know we have recovered from our loss. We also will have lost our fear of going through the dying process ourselves.

May God and all his blessings be with those of you who experience these most intense and painful emotions.

Dr. Norm Mitchell