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Self esteem. How much of your self-belief comes from your role in life? For many it is a great deal, with people gaining energy and confidence from their job, or their roles as a homemaker, parent or volunteer. What happens then when suddenly you have the role of carer thrust upon you due to a loved one’s cancer?
This is one of the aspects of ‘Who Am I?’ that I wanted to look at as a result of attending the NCCSHG conference.
You might still be working, but be less able to give full attention to your role due to distractions or worries. Or you may find you are a full-time carer. You might excel at your caring role, or feel that you are poorly suited to it but have no choice. Either way, being a carer is not who you are it is what you are doing – an important difference.
This is why this year’s Carers Week had the theme of ‘A Life Of My Own’. Only by continuing to pursue other interests, by following what matters to you (yes, I know the caring matters, but other things can too), can you maintain a sense of yourself. That sense of yourself helps you cope with the demands of this role, and helps you build into the future when that role is no longer needed.
On top of this, you could go further still and take the path to even greater self-awareness. This is where what defines who you are comes from within rather than being based on activities and interests. This is an option I will be exploring more over the summer.
‘Who Am I?’ is such an interesting question to ask yourself!

Last year when I attended the NCCSHG conference, I was invited to lead a workshop, and was glad to do so. Not surprisingly I talked about Life in the Cancer Fallout Zone, and on the form there were three workshop slots listed. As I didn’t mind when I gave the workshop I ticked all 3 boxes – and ended up running the workshop 3 times! Now, I didn’t mind this and thoroughly enjoyed interacting with each set of participants, but it was rather tiring!
Fast forward to 2010 and I was again asked if I would like to lead a workshop. This time, though, I knew I was only going to be there for one workshop session, so I said no. Instead I decided to do something for myself – to attend a workshop. I went to learn a little more about crystals and particularly pendulums – and it gave me a real boost before I set off on the long drive home to Dorset. The drive went well and I arrived home in good spirits. Compare that to how I might have felt had I been ‘working’ up until I left the conference.
When someone in the family has cancer, it can seem really radical to do something for yourself. But it can also do a lot of good. Sometimes it’s extra hard because it means saying no to someone or something – as I did. What I found was that although I didn’t need to I explained that I was taking care of myself – and got a really positive response.
There are so many demands in life that sometimes you end up with no time to call your own. You may even want to do all the things you are asked to do, or invited to attend. But maybe next time before you say ‘yes’ automatically you should think about what else is already happening. You may want to do each thing, but do you really want to do all of them? And if saying yes really means saying no to doing something for yourself then maybe a gentle ‘I’d love to, but I’m afraid I can’t’ would enable you to be more supportive in the long run.
PS It won’t make you a selfish person!

Last year I attended the National Conference of Cancer Self-Help Groups (NCCSHG for short) cancer conference, and in doing so I missed my sons’ school fete day. This year they clashed again and the boys came first, but I was still able to go to the cancer conference 2010 for one day – dashing up to Manchester and visiting family as well!
Even though I was only at the conference for a short time, it felt very different from last year. I already knew where to go, recognised some faces (and some remembered me too), and felt altogether more relaxed. I guess I’m like most people – I prefer places and people I know. But if I hadn’t been prepared to attend last year for the first time then I would have been missing out, as this is a truly excellent event.
I’ll be reporting back my impressions and comments on the sections of the conference I did take part in over the next several weeks – in fact it may take the whole summer as there is so much to think about!
My first impression though is that for me there was a theme to the conference. It wasn’t an official theme, just something that came up a few times and meant something to me. The theme was ‘Who Am I?’
This is an issue that can come up for someone with cancer as their world and self-image is rocked – and this has a knock-on effect for everyone around them. It is an issue for friends and family as their role alters, sometimes dramatically if they are thrust into a caring role. I’ll be looking at these issues in more depth in future posts, but for now I would be interested to hear your stories. How was your self-image affected by cancer diagnosis or treatments? Was it someone else who felt all at sea and that affected you? Please share your story as a response to this post, or feel free to email me.

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?

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.

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.

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.