Taking Health Seriously – Healing Journey Week 1

As you may remember from this post, I set an intention to work through the Healing Journey Program (as far as it is available for download) and report back here on my progress. The eagle-eyed among you might have noticed that it is much more than one week since I did that. Knowing myself, I put out a request for a buddy to keep me accountable and through the Healing Journey newsletter I got my wish, so then there were no more excuses.
I’ve now completed the first week of the program and so it’s time to let you know my thoughts. A lot of what was in the week’s session was information I was already aware of – through the conference presentation I mentioned last time and other reading – but what caught me up short was the part about taking it seriously. I was once told that the most dangerous phrase to making progress is ‘I know that’, and it really applies in this case.
I know that cancer is serious – I watched my mother die from it. I believe that I can affect my own health by both my actions and my thoughts. And yet, I don’t always pay my health enough (if any) attention. Although I know exercise to be beneficial, since moving house in March (and losing a daily walk up the hill from the school run) I’ve completely failed to get my exercise program restarted. Although my diet isn’t appalling, I constantly struggle between the desire to eat foods that ‘feel’ healthy to me and the need to put something on the plate that my children might eat. So I guess I just haven’t been taking my own health seriously.
This might also apply to someone who has been diagnosed with cancer if they just put their trust in medical treatment (the passive approach) and assume that they will be ‘fixed’ and then will be all right. It can also apply to caregivers and supporters who neglect their own health in their understandable desire to do everything and anything to help the person who is ill.
For me, the first step is to get back to doing some exercise, and so I am delighted to say that I’m taking up Scottish Country Dancing, which is something I used to do when I was at school. It’s great fun, and the challenge of learning the steps keeps my mind off the energy needed.
What could you do to take your own health seriously?

Cancer Patient Information

Last year I reported on a pilot scheme in the UK to deliver an individual information prescription to cancer patients.
This year the pilot scheme is complete and the system (now known as National Patient Information) is ready to roll out to medical professionals in the UK in a two-year program. This is good news as it should improve the consistency of information prescriptions given to cancer patients at diagnosis as well as making the information more tailored to their individual situation.
Even better news is that once the system is fully launched in September, it will be accessible to the public. So even if this was not available when you were diagnosed, or medical professionals in your area don’t have access, you will still be able to get hold of the information. It also means that relatives and friends not there at the diagnosis can do their own research, though you may need some specific details to know which information is relevant to the individual situation.
This will be an online system, and already covers a large percentage of cancers. Those which do not have much information yet are being worked on so that in time everybody will have access to high quality information at their fingertips or at least at the fingertips of a computer-savvy relative or friend.
We will be providing links to the site where the information is held as soon as we are able.

Who Am I? – Cancer Personality Change

When cancer appears, our identity as friends or family members can change – though becoming a carer or just in our relationships due to stress and worry. But what about when the person who has cancer seems to change – maybe so much that you hardly recognise them?
I already talked about loss of a role by which we define ourselves (through becoming a carer) here. This is obviously also an issue for those dealing with their own cancer – either through temporary leave or through having to give up a job or role. This can have an additional effect on someone in addition to their feelings and fears over the illness. Of course a job is not our real identity, though it can seem so. Stephen Fry expressed it well in an interview in Radio Times magazine : “We are not nouns, we are verbs. I am not a thing – an actor, a writer – I am a person doing things – I write, I act – and I never know what I am going to do next.”
Loss of identity can also go to a deeper level. Think of how you might describe yourself were you to join a dating site, or on a job application. You could describe yourself as gregarious; fun-loving; sensitive; optimistic; focused; hard-working etc. But if you had cancer any of these could change, leaving you somewhat at sea as to who you are now.
If this happens to someone you care about, little wonder if their behaviour changes accordingly. It could leave you wondering what has happened to the relationship or the person you knew.
Here are a few points that might help if you find yourself in this situation:

• Change is natural; after all none of us like the same activities or use the same behaviours we did at the age of five (at least I hope not).
• The personality change might be temporary but any words you say in the heat of the moment cannot be unsaid, so try to respond rather than react.
• You might need a friend or chat room to unload to at times you feel extra frustrated.
• A changed relationship does not have to mean a worse relationship.
• The person needs to find out for themselves who the ‘new them’ might be. If you give them space to do this you may enjoy getting to know them too.

Cancer Resources

Cancer Fighting Strategies

On this blog our focus is on the friends and family of those who have cancer – their problems and concerns, how they are affected, and how they can help both themselves and their loved ones. Often for friends and family their top concern is how will the person with cancer heal? Whilst healing cancer is not your job, it is understandable that you would want to be aware of the best cancer resources.

Information on the internet can be bewildering, so here is our selection of some resources which may help with support for the person fighting cancer. It may help you to access them and become well informed, and if your friend or family member wants help you may be able to pass the information on. Please do bear in mind though that, however well meaning, advice from those around can be overwhelming so please pass on what you learn only if it is wanted. As these are not our websites, we can’t vouch for the information contained, but all promote an active approach to a cancer diagnosis, and you will know if the information makes sense to you.

• Cancer Active A UK-based charity which looks into complementary and alternative approaches to treating cancer. Supplier of nutritional products. They also have an excellent quarterly magazine you can subscribe to. Click here for the website
• Fighting Cancer Sites by Jonathan Chamberlain, the author of Cancer : The Complete Recovery Guide. Click here for the main website and click here for the blog
• Cancer Recovery FoundationBased on the approach in the book Cancer : 50 Essential Things To Do by Greg Anderson. This website contains individual stories of journeys with cancer, and access to further resources provided by the charity. Here are links to the Cancer Recovery Foundation UK and Cancer Recovery Foundation International websites.

Also relevant is the Healing Journey Programme I wrote about in a previous post.
I hope you will find these resources helpful, and remember to look after your own needs as well. One step towards that might be to take a look at my book

Helping My Cancer Stricken Sister

The Following is a guest post from Jayan :

I knew that cancer didn’t discriminate. I knew it didn’t care if the person was old or young or if the person already had enough problems. I knew all of this, but I didn’t know cancer had my sister’s address. Recently, my baby sister was diagnosed with breast cancer. My entire life, I’ve always tried to identify the hardest thing about living. Because my sister has been diagnosed with cancer, I now know what the hardest thing about living is. The hardest thing about living is watching someone you love die. Still, it would be selfish of me just to sit back and watch her die. If cannot save her, but I will help her by being there.

Being there is the best thing that any of us can do when a friend or family member is diagnosed with a terminal illness. Being there means more than just offering a shoulder to cry on; being there is more about helping those you love walk when they can’t walk themselves. Here is a list of ways in which I assist my sister.

My sister adores her four children so even when she is feeling her worst, she still wants them around. Her friends and I take turns shopping and preparing meals and snacks for her and her family. The only thing my oldest nephew has to do is heat the food, and the family has quick, homemade meals.

When my sister and her husband visit the doctor or when they want time alone, they know that my home is never locked to their children. My nieces and nephews receive more hugs and kisses than they actually want, but part of what I do to help my sister is to let her kids know that they are never alone. Quite often, my sister tells me that my love for her children is one of the things that helps sustain her.

Sometimes, I sit with my sister when she undergoes her chemo. We always said we would sit together in our old age, and we often laugh about this during her treatments. Sometimes we play games from our childhood, and other times, I simply hold her hand. When I’m out shopping, I’m constantly on the look out for books and movies that will make her laugh.

Surprisingly, most of the things that I do for my sister are things I’ve always done. I’ve always bought her gifts and helped her with her children. Even after having four kids, she still doesn’t hesitate to call me when she has strep throat or an illness she has caught from one of my nieces and nephews. I’ve always been there for my sister, and that’s the one thing that we can all do when our loved ones become seriously ill – we can continue to be there for them. Don’t give up, and don’t give in and run away. Be there.

Jayan writes about yoga, nutrition and weight loss. If you liked this article, please visit Indoor Chaise Lounges and Chaise Lounge Sofa.

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Being there for someone who is dying is a wonderful gift, especially keeping things as normal as you can. If you are finding it difficult to be with someone who is at the end of their life, it might help you to read the book Gentle Dying by Felicity Warner – you can find a review on our website.

The Healing Journey Program

Mind Healing?

The Healing Journey Program was presented at the NCCSHG conference by its creator Alastair Cunningham and Petra Griffiths, who heads the program in the UK.

The Healing Journey is based on the premise that healing can take place from outside (conventional medicine and most complementary and alternative practices) and from inside (psychological and spiritual change and self-healing). Both of these are valid and may well be necessary, but they can also work in harmony. Evidence also shows that quality of life improves when people work on that inner healing. This is taking an active approach to a cancer diagnosis in yourself or another – rather than the passive approach of leaving it all up to the doctors.

The Healing Journey Program itself has been used extensively in Canada for over 25 years, and refined using research and feedback into a 5-level program where participants progress to the level they wish, with each level going deeper into the mind and spiritual aspects of being. The program is open to those who have or had cancer, and their friends and family.

A UK edition of The Healing Journey: Overcoming the Crisis of Cancer book is now available, and I will be reading this and reviewing it in due course. As a healing journey is appropriate for everyone, not just those who are ill, I’ve also decided to work through the programme myself and report back here how I get along. (I am always very conscious that dealing with, thinking and writing about cancer on a day-to-day basis takes some managing on an emotional level so I definitely have something to gain) Both the Healing Journey UK and original Healing Journey websites have access to workbooks and audios to make that possible. What would make things even better would be to have someone to share the journey with, so if anyone would like to join me in self-study and keep in touch by email as to how we are doing, then please do get in touch.

Who Am I? – When You Become A Carer

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!

Do Something For 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!

After Cancer Who Am I?

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 Challenges of Being a Caregiver When Brain Cancer is Involved

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

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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?