Archive for October, 2009

Following on from my last post looking at how breast cancer affects husbands or partners, here are John InDelicato and Dave Balch’s top tips:

John’s list of recommendations:

  • Be honest and open about your feelings.
  • Accept the help of family and friends. You may be providing them with an opportunity to fulfil their need to help.
  • Include children in conversations and encourage dialogue with them to dispel fears, misinformation, and mysteries.
  • Reconstruction brings closure and wholeness.
  • It’s okay to be broken.
  • Realize and come to terms with what is unimagineable. Men may not experience breast surgery, chemo, and radiation.
  • Learn to listen.

Dave’s list of recommendations (“The 11 L’s of Caring and Coping” © 2009, Dave Balch All rights reserved):

  1. Learn as much as you can. Even if what you learn is scary, it’s better to know than not to know.
  2. Level with each other. Sharing your fears helps reduce them.
  3. Laugh. Nothing changes… but you feel better!
  4. Live in the moment. Focus on things you can control, not things you can’t.
    Remember this phrase: “Don’t go there ‘til you get there.”
  5. Look forward to something to remind you that your crisis won’t last forever, even if it seems like it will.
  6. Keep friends and family in the Loop. It’s important but stressful to keep everyone up-to-date. Reduce that stress by using our free online services at: http://www.ThePatientPartnerProject.org
  7. Let people help you, but only with things that you need.
  8. Limit yourself to one crisis at a time. You can’t solve all problems at once, so focus on only one problem at a time.
  9. Lift your spirits by taking time for yourself. Remember what they say on the airlines:
    “Put on your own oxygen mask before helping others with theirs”
  10. Lower the bar. Give yourself a break: do less than you normally do until things are better.
  11. Lose people that upset you. Avoid well-meaning people who try to help but make things harder instead.
  12. Remember that things seem worse Late at night, when you’re tired. Be aware of that; then it’s easier to ignore the additional stress.

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As October is Breast Cancer Awareness month, I thought it would be good to take a look at our awareness of how breast cancer affects a partner in a long-term relationship.

Needless to say, it is devastating to find out that your wife or partner has breast cancer – but what are the biggest issues, the best ways to cope, and are there any positives?

I spoke with Dave Balch and John InDelicato, both of whom have supported their wives through long and arduous journeys with breast cancer. They were both keen to stress that one thing that had helped them to cope was to be fully involved in their wife’s treatment, in finding out information, gaining second opinions and being there for each chemotherapy session. This had a huge impact on both their lives. John felt he had put his career on hold as his wife’s health had to come first; a decision which came with financial implications. Dave found it difficult to continue running a home based business, but had to find a way to do that in order to both protect the family income and meet the additional bills that cancer brings. These issues bring with them immense stress, which affects concentration in other areas. “My wife had the chemotherapy, but it was me who had the ‘chemo-brain’,” says Dave, describing the juggling act he performed with his work and managing his wife’s treatment schedule.

The kind of involvement that these men had with helping their wives get well takes an immense amount of time. Other responsibilities must be taken care of, with the help of others. For John this meant balancing his work, caring for his wife, assuming greater caring for his young children, sometimes accepting the help of loving friends and family; for Dave there were the demands of a business, planning his wife’s care and an extensive menagerie of animals needing loving attention. The advantage of this involvement, though, is a deepening of their relationships. Both got to know their wives at a level most of us hope not to have to reach, and they were in awe of the spirit, humour and courage these women displayed.

Breast cancer also brings with it the inevitable issue of sexuality. In a healthy loving relationship, self-image has a large part to play in intimacy. As a woman, I am aware that my breasts affect my image of myself as a sexual being – and so I can imagine how losing those breasts would challenge that self-image. John’s wife Donna had undergone a double mastectomy as a result of her second bout of breast cancer, and been told that her slight frame meant there was no option of reconstruction. As a couple, they felt they had put this behind them, just being grateful for Donna’s survival. There were times, though, when Donna would be distraught at the lack of ‘a bump’ for her clothes to hang from. It was with amazement that they then discovered the option of reconstruction using donated tissue known as Alloderm. There was no question for them as to whether Donna should go ahead with the procedure, and the results have been fantastic. “I feel that I’ve got my whole wife back,” says John, “and I can tell she feels the same from the feisty looks she gives me.” John would encourage other husbands to support their wives in having reconstructive surgery, but not for their own needs. “It’s 90% for the wife, as it allows her to put a full stop on her cancer experience and gives closure.”

One thing that’s for certain is that life after a wife’s breast cancer will never be quite the same again. There will be a ‘new normal’. The quality of this new normal depends on the way the husband coped during the illness, and how well the couple communicated. There can be an immense amount of learning and growth in this journey. John found that he had grown in his ability to deal with and speak about his emotions. Dave felt that the coping skills he developed were so important that he will be sharing them through his soon to be launched Coping University (www.copinguniversity.com), which will support anyone coping with serious illness in themselves or their family. It seems that ‘life is the best teacher’, and many will be able to benefit from the insights he gained.

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I’ve just returned from the MacMillan Cancer Voices conference, where the issue of cancer advocacy was explored in detail. So what does it mean? What is cancer advocacy?
To put it a more straightforward way, cancer advocacy is about speaking out. Telling about your experience as a patient or family member helps in many ways. It lets the medical profession know about what they are doing right – and what can be improved upon. It helps organisations like MacMillan and Families Facing Cancer know what your issues are, so they can provide services or lobby for change (such as the recent scrapping of charges for drugs for people with cancer in England). It also lets others know that they are not alone in their struggles, which can provide some peace of mind at a difficult time.
Hearing stories at the conference brought home that much has changed in the medical treatment of cancer since the early 1990s when my mother was ill. There is much less in-patient treatment, people go home earlier after surgery and chemotherapy is likely to be administered on an outpatient basis. These changes are generally welcomed by those receiving treatment. More changes are likely to follow in the years to come, and health services are taking note of the wishes of their service users more than has ever been the case in the past. It seems that speaking out does make a difference.
It does take courage to speak out – courage to talk about an illness that can involve parts of the body we don’t normally mention; courage to examine relationships and the effect the illness has had on them; and courage to relive emotions which may have pushed you to the edge. Those at the conference, though, would be keen to tell you what they have gained from their advocacy. They gain confidence from putting themselves forward and having their views valued. They gain a sense of purpose – especially if by talking about something that went wrong for them, they can prevent it happening to another. They gain a sense of community by joining with others to make a difference. Living in the ‘world of cancer’ when you don’t have to may seem an odd choice to make. But it is not the depressing world you might imagine. One of the newest Cancer Voices at the conference said with a hint of wonder – ‘I never expected it to be fun!’ Of course it is the people that make it so, but also the ability to make a difference.
You can join in too – by emailing us at Families Facing Cancer to let us know what issues you need addressed, or by signing up as a Cancer Voice with MacMillan. We want your voice to be heard.

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When a friend or family member is diagnosed with cancer, your life can be thrown into turmoil. To help keep you grounded, stop and consider these 5 points:

  1. It’s not your fault. However tempted you are to believe that the cancer is caused by something you did or failed to do, this is extremely unlikely to be the case. You are not to blame.
  2. It’s not your job to make them well. If you are a parent of a child with cancer, you will be likely to be involved with making decisions about their treatment. In any other case, the person with cancer will choose the best course in consultation with the team of health professionals they want to involve. There is a lot that they can do to affect the outcome of their illness. You may be called upon to offer support and assistance, but getting well is their job and theirs alone.
  3. They are still the same person they were before the cancer. They are facing a challenge and their personality may change as a result – either for a short time or permanently. But they have not suddenly become a lesser person, or a victim.
  4. It is ok (in fact it’s important) to get support for yourself. You may assume that all help and support should be directed towards the person with cancer – but you are also facing a challenge. The more supported you feel, the better you will cope. The better you cope, the more support you will be able to offer in turn.
  5. You can make a difference. Even though you may feel helpless and out of control, there is a lot you can do. The actions you take and the words you say can affect both the person with cancer and other friends and family members positively. You really can help.

These points are taken from the booklet ‘Cancer – Back to Basics : First Questions Answered for Family and Friends’. This booklet is available to download free at the Families Facing Cancer website.

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