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Archive for the ‘Coping With Cancer’ Category

The following is a guest post by Judy Brutz :

My husband has glioblastoma multiforme, an incurable form of brain cancer. Ted Kennedy died from it. The early challenges I am experiencing as a caregiver are disbelief, feeling overwhelmed, trying to define my role as caregiver, maneuvering a change in my marital relationship, recognizing the need for financial and legal planning, and caring for myself.

Disbelief. It is difficult for me to stay focused. It is hard to grasp what is going on. There are a few facts that I hold onto. My husbands’ symptoms developed rapidly during a four week interval. From being able to speak normally, he started searching for words, and then progressing to not remembering the names of objects, substituting words and phrases which didn’t make sense, to not being able to spell. He had an emergency MRI, which showed a large mass over his left temporal lobe. A rushed appointment for brain surgery was made in the next state. I was told that he would not be expected to live more than one or two years even with the tumor removed and aggressive treatment undertaken.

Overwhelmed. Initially I felt completely overwhelmed, like I didn’t know whether I was coming or going. Ten days after surgery, I am going in and out of feeling overwhelmed. I realize that I’m not attentive to my surroundings, as though I’m zoned out somewhere. My center of my chest hurts. I know this to be a major sign of stress. Also my breathing is shallow. I must tell myself to breathe.

Caregiver Role. I’m abruptly being thrust into the role of caregiver, and I’m trying to figure out what this means practically. My husband’s expressive language limitations cause major problems in communication and in joint decision making. I need help in defining my role. Hopefully, when we go to the Cancer Center, the social worker will help educate me.

Marital Relationship. I’m having to take over decision making and financial management. My husband needs reminders and direction. We are both distressed. Both of us become frustrated and irritable with each other. He says things to push my buttons, and I react. I’m on a sharp learning curve. I need a support group and will go to a meeting this coming week. I also need personal counseling, and my appointment is made.

Financial and Legal Planning. I need to make sure that our affairs are in order. My husband had this role before his surgery. I’m discovering that our papers are in disorder. He may have allowed his life insurance, naming me as beneficiary, to lapse. I will go to a lawyer even though my husband does not want me to, nor does he want me to spend our money on legal fees. I feel conflicted in going ahead without our discussing and agreeing to a plan, but this is the new reality of our relationship and my role as caregiver.

Self Care. It is critical that I take exceptionally good care of myself. I have my own health issues and must not get run down or stressed. Otherwise, I will rapidly decline and then both of us would need caregivers.

Judy Brutz is author, spiritual director, retreat leader and speaker. She lives in Idaho with her family, and enjoys nature, knitting for peace, and volunteering. http://judybrutz.net

Article Source: http://EzineArticles.com/?expert=Judy_Brutz

We wish Judy all the best on the difficult road ahead. Do you share any of these issues? Are there any coping strategies which have helped you?

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I came across an article which talks about how mindfulness meditation can help people with cancer and their supporters by interrupting the cycle of negative thoughts and worries. You can read the article here.
I personally find it difficult to ‘just meditate’ – which probably means I have not practiced enough. So I prefer guided meditations, and I had some created for Families Facing Cancer. One of them is a Mindfulness Meditation, and you can download it to play on your computer or MP3 player here : mindfulness meditation cancer. It is about 12 minutes long – I hope you enjoy it.

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As part of Carer’s Week 2010 we are thinking about carers needs – what will allow them to have a life of their own? Yesterday I shared a resource which can help carers to recognise that this is something they need and can have. Today I would like to look at what those needs might be. I am not a carer myself, though I have family members who have provided full-time care for my mother when she was ill, so I will probably miss out some needs. I believe that all of these and more should be provided to carers :

  • Information – about the illness, caring and benefits.
  • Training – in caring techniques appropriate to the care they are providing – and ongoing as the care needed may well increase with time.
  • Advocates – people to speak on their behalf, both on a national level and for them individually to ensure they get whatever benefits or respite they need.
  • Respite care – to be relieved of caring on a weekly basis and for regular holidays, without having to ask for this.
  • Equipment – the equipment which can make all the difference to caring should be assessed and provided. The carer should not have to research this themselves.
  • An alternative – if the carer is or becomes physically or emotionally unable to provide the level of care needed there should be resources available to step in and provide an alternative, be that residential care or more likely carers coming in to the home. Carers should not be made to feel they have let anyone down if they are not able to continue in their caring role.

What else do you, as a carer, need? Or am I demeaning carers by suggesting they need help? Please share your experiences.

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What a strange title!
The reason for it is that I wanted to share a resource with you. If you are a carer, you probably won’t buy it. Heaven forbid that anyone should suggest you be (even a little bit) selfish. But you should, you should – buy it, that is!
And if you know someone who is a carer (even if they think they aren’t, really) then you should buy it and give it to them.
This resource is a book, and it’s called The Selfish Pig’s Guide to Caring. The title is, of course, a bit of a joke (and if humour about such a sensitive subject is likely to offend you, then I guess it won’t be the book for you). Carers are not really selfish at all – but they often think they are. “Why should I get a day off from caring when my loved one cannot get a day off from their illness or disability?” Well, maybe the key word here is their.
In this book Hugh Marriott gives lots of practical advice, as well as subtly (ok, pointedly) suggesting that being a little bit of a selfish pig would be a very good idea. I devoured the book over last weekend, and think it’s the first thing any caregiver should read – before all the leaflets about their loved one’s illness! Now I’m just trying to think of a way to pass it on to my father, who does not yet think of himself as a carer (the second time around).
You can find links to buy the book on Amazon through our website here.

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Next week is the 10th Annual Carer’s Week in the UK. The theme this year is A Life of My Own, and carers are invited to share what they need in order to have a life of their own. I’ll be trying to keep up to date with the events of Carers Week next week (and I ought to just point out for my US readers that when we use the term carer we’re not talking about a professional, but a friend or family member looking after their loved one in some way – you might use the term caregiver).
Before Carers Week starts on Monday 14th June, I want to have a quick think about why carers should have a life of their own. You may think it’s obvious, but I find that isn’t always the case. Sometimes people comment on my book ‘Their Cancer – Your Journey’ by saying ‘But you’re asking me to be selfish!’ – though in fact what I am saying is that it is not selfish to take care of your own needs. So why should a carer do that – and have a life of their own? Here are my suggestions, feel free to add yours as well.

  1. To help you remember that life is not all about illness.
  2. To give others the benefit of your company if you so desire.
  3. To keep hold of who you are and not lose yourself in your role.
  4. To make sure the person you are caring for is not so dependant on you emotionally that they have problems if you cannot be there.
  5. To make you better able to cope and less likely to lose your cool.
  6. To give you something to talk about.
  7. To ensure that when the caring role ends there is still something left in your life.

Carers are amazing – not because they have chosen this challenging role, but precisely because they haven’t. And even having not chosen it, they keep going against all odds, simply because in spite of everything thrown at them they still care.

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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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Even after cancer treatment has ended, many people find that their sleep is still affected. Both physical symptoms related to the cancer or treatment and worry can cause sleeplessness. Add this to the fatigue which can remain for a year or more after treatments such as chemotherapy and there is a real effect on quality of life. Sleep medication can even be prescribed, but most people do not want to rely on such medicines.
These days it is quite common for people to use complementary treatments in addition to their cancer treatment, but now there is evidence that yoga can be beneficial after treatment to alleviate some of the remaining effects. Participants in the study reported improved sleep, less use of sleep medication, reduced fatigue and improved quality of life. The study followed a 4-week yoga programme, and I would expect that continuing with the yoga would result in ongoing improvement.
(For more detail about this study see Medical News Today.)
I also am interested in how this relates to family members. For partners, their sleep may also be affected directly by a wakeful bed-mate. There is also the worry that family members feel. Although not included in the study, it may be that yoga would also be helpful here – and it is also an activity which could be a new shared interest if you were to join in.
Are these issues that have affected you? How do you handle sleep issues? Are there other beneficial treatments or activities you have tried? Please add your experiences in the responses.

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