Archive for the ‘Breast Cancer’ Category

On this blog we’ve already looked at supportive books for families affected by cancer, and mentioned the Bah! Brilliant Book Bonanza. Before we leave the subject for a while I wanted to invite Stephanie Butland (the creator of the BBBB) over to share some of her experiences – and just to remind you that the first book giveaway ends on 31st May (that’s bank holiday Monday here in the UK) so get your book requests in now. My book Their Cancer – Your Journey is included in the giveaway so you can even put your name down for a free copy of that here (you will be invited to make a small donation to charity). So here’s our interview with Stephanie about dancing with cancer, how her family coped and how books made a difference to her:

LCFZ: Hi Stephanie, and thanks for taking the time to answer a few questions for the readers at Life in the Cancer Fallout Zone.

Stephanie: It’s my pleasure. I’m glad to be here.

LCFZ: You’ve been writing a blog through your experience of breast cancer. Has that been helpful to you, and have you found it helpful to read others’ blogs?

Stephanie: I think writing the blog has been one of the most helpful things I’ve done. The act of writing means that I have to process my experience, and getting it on to the page quite literally gets it out of my system. So there’s a huge therapeutic element to it. And others visiting the blog and sharing their experience makes you realise that there’s a world of cancer survivors out there, many of them blogging too, and reading about what is happening to them can be helpful.

LCFZ: I’m sure your blog http://www.bahtocancer.com has also been a comfort to others – can you share any feedback you’ve had?
Stephanie: I’ve been quite bowled over by the feedback. I had an email from a lady in Canada that I published as a post because it was so lovely – it’s here. http://bahtocancer.com/2010/03/another-joy-from-elsewhere/. Just the fact that the blog is so widely read – I have about 15,000 hits a month – delights me, as does the fact that so many people who read it don’t have cancer.

LCFZ: This month you are launching your Brilliant Book Bonanza – can you tell us a bit about this and where we can find it?
Stephanie: One thing I discovered during treatment was that my usual response to long days of not feeling well – curling up on the sofa with a book – didn’t work. At first I put it down to poor attention span, but then someone gave me a Georgette Heyer novel – a fantastic regency romance featuring a pirate in disguise and a maiden with flashing eyes – and I devoured it. I realised that my usual books just weren’t the right books for me while I was trying to get better. So I started reading differently – Agatha Christie, Dick Francis, Lisa Jewell – and was re-reminded of what a healing thing a good book can be.
The BBBB – Bah! Brilliant Book Bonanza – was born from this experience. I’ve persuaded lots of writers and publishers to donate copies of their books, and I’m inviting anyone in need of a good, uplifting read to come along and leave a ‘pick me!’ comment. So you can get a good, free, read if you need one, or you can make a small donation – I’m suggesting £2 – for every ‘pick me’ comment that you leave. So people in need of a good book will get one, and cancer charities will make a bit of money. The May giveaway is here http://bahtocancer.com/bbbb/bbbb-may-2010/

LCFZ: Did you find during your illness that you wanted to read books about cancer – or to avoid them and concentrate on other things? Are there any particular books you remember being especially helpful?

Stephanie: That’s a really good question. My immediate response to any problem is to read a book about it, so I hit Amazon and grabbed a few – Anticancer and The Breast Cancer Book are two that stick out as being especially helpful. I had read John Diamond’s C when it first came out and went back to that too.

LCFZ: On this blog we try to think about how cancer affects other members of the family, and ways to cope. Can you share any ways your own family was affected, or give family members any advice from your experience?

Stephanie: because I was diagnosed at the age of 37 with no previous cancer in the family, everyone was very shocked. My son was then 14 and my daughter was 12, which I really felt was the worst possible time for this to happen to them – they were old enough to fully understand the implications of cancer, but hadn’t really had any crises in their lives that had taught them coping strategies. It seemed to me that your mother having breast cancer was going in at the deep end as far as coping with a crisis was concerned. We adopted a policy of absolute honesty from the start, so whatever was happening, the children knew about. Even though the advice we were given said they were likely to shut off and ignore the problem, they actually did the opposite. Ned came to a hospital appointment with me because he wanted to meet my surgeon before the operation. Joy helped me to pack my bag. When I had a PICC line, they both opted to learn how to clean and flush it for me at home. (There’s a post about that here: http://bahtocancer.com/2009/01/learning-to-flush/)
This worked both ways though. I had to learn to be honest about how I was feeling, rather than insisting that I was fine all the time. I found that really difficult: I didn’t want people to worry, I didn’t want to feel like an invalid, and, I suppose, I didn’t want to admit that I wasn’t OK. This is an ongoing lesson for me: I am still trying to be better at admitting I feel lousy rather than soldiering on. (Fortunately, I feel lousy rather less these days.)
My husband Alan’s approach could probably be best summed up as ‘Just because you have a cancer doesn’t mean you’re not you’. He never treated me as an invalid – not even when he was standing next to the shower making sure I was OK in the first few wobbly days after surgery. I’ve never felt less of myself – or less of a woman – during my dance with breast cancer, and so much of that is down to Alan’s approach.

LCFZ: Thanks again for contributing to Life in the Cancer Fallout Zone, and we wish you success with the Bah! Brilliant Book Bonanza.


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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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