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Archive for the ‘Research’ Category

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.

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More than three-quarters (76%) of people looking after an ill, frail or disabled loved one do not have a life outside of their caring role, according to new research issued to launch Carers Week.

The results show that huge numbers of carers are left isolated and lonely, missing out on opportunities that the rest of the population takes for granted. 80% have been forced to give up leisure activities or from going out socially since becoming a carer.

The majority of those surveyed can no longer rely on relatives for support either, as these relationships have suffered as a result of caring – 75% say they have lost touch with family and friends.

One of the carers who took part in the survey was Theresa from Glasgow. She cares for 3 people – her 2 sons, one of whom has Down’s Syndrome, and her registered blind mother. Balancing full-time work with caring has meant sacrificing her life as she once knew it. Theresa says:

“A life of my own is a daydream. Caring demands are relentless, and costs you your health, relationships and happiness. To have a life of my own, for just one day would be marvellous.”

Carers say they simply exist, are marginalised and invisible. Unable to socialise, to have romantic relationships, or even to consider having children, the impact on carers is emotional, mental, physical, and fiscal. 4 out of every 5 carers say they’re worse off financially, while more than half (54%) say they’ve had to give up work.

Despite saving the UK economy £87 billion annually by relieving pressure on health and social services, carers are not being supported in the vital role they play for both their communities and society at large. Almost all carers questioned agreed a life of their own would be achievable if they received breaks, a decent income and were given support in times of crisis.

Carers need and deserve change. Better access to advice and information, improved funding for breaks, and support and flexibility for carers at the workplace are all needed urgently. Only then will carers get a real chance at a life of their own, and the opportunity to do some of the things that the rest of us take for granted.

3,282 carers took part in the survey, both online and by post, which was carried out by Carers Week between 18 February – 7 April 2010. 65% of those surveyed were heavy-end carers, responsible for 50+ hours of care each week.

If you are a carer, is this also your experience? The interview I posted yesterday suggested that there is help available to allow you some time off. My own feeling is that it may be there but the very nature of caring makes it difficult if not impossible for carers to access until they reach the point of burnout. They simply don’t have the energy to go looking for the help. What help have you found in your area, and how well signposted was it? Was it the kind of help that you needed?

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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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It sometimes seems that cancer treatments are very harsh, and cause ongoing health problems (see my last post), so could there really be help for cancer from the humble pomegranate?

New research published this month has shown that compounds found in pomegranates act to slow tumour growth in breast cancers which are hormone dependant. This is research done in a laboratory (published by the American Association for Cancer Research), but the implication is that this could translate into a real help in people with the disease – or even help with prevention.

If you take this research and put it together with previous studies, which showed that drinking pomegranate juice slowed the progression of prostate cancer (another hormone dependant cancer) it does look as though this could really help some people. (Reported in 2006)

What are your thoughts?

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Last week a news item was reported saying that a person’s chance of surviving a year from a cancer diagnosis in the UK varies depending on where they live. This is sometimes referred to as a ‘postcode lottery’. You can read more on this news item here.
These statistics are certainly cause for concern. Where you live should not determine the quality of your care. But is the issue really as clear cut as that? Are the differences a result of the care that is given, or the screening in the area – or are there cultural factors at play, with people in one geographical are more likely to go to the doctor with worrying symptoms than others?
The parliamentary group has suggested that targets for one-year survival which do not take account of age be put into place across the whole of the NHS. It is claimed that this would benefit over-75s in particular. But benefit them in what way?
Unfortunately, I fear that what would actually happen is that, given such a target, there would be an emphasis on prolonging peoples’ lives beyond the one year measure. This could be at the expense of that natural death I was supporting in my last post. Prolonging life can be an expensive business. In our already stretched health service, I would hate to see the focus being put on causing suffering to the dying by extending their lives to meet a target at the expense of helping them die well, or even worse at the expense of other treatments.
Surely a better focus would be to reach the underlying reasons for the geographical differences – which may not be the same in each area. Sure, ask health services to improve their practices where they are not up to scratch – but also make sure that the money does not need to be spent on education for doctors to recognize symptoms, or outreach to communities as to what symptoms require investigation (as in iVan which I mentioned in an earlier post).

How do you think this information can best be used? Do you like the idea of targets? Let me know your thoughts in the replies below, and let’s join the debate.

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It was recently reported that morphine may encourage the spread of cancer – and yet this a drug which can be given to those who have the disease. See BBC News Article As a person who is not medically qualified, I do not have sufficient knowledge to determine how relevant this information is to people who have cancer in general, or any specific person’s cancer. And yet this kind of information is now available to me and every person searching desperately for anything to help themselves or a family member survive cancer and thrive in the future.
But what is the quality of the information? How can you judge? This is a study of whether morphine causes cancer to progress, and the results indicate that it could indeed do so. And yet those commenting on the results say both that further testing will be needed before clinical decisions change, and that there is a drug which could be given in addition to suppress the action. Once upon a time, not very long ago, this kind of information would be available to a few people who were qualified to understand the research and what it meant – and of course they would probably have their own differing opinions and viewpoints. Now such information is all too easy to get through the internet, though unless we have experience of medical language we will probably have to trust others to interpret it for us.
As a family member or supporter, what are you to do with this information if you come across it? Should you speak to the person who has cancer, counselling them to avoid morphine at all costs? (If I was working on getting better from cancer, I think I might find such advice a little wearing after a while, however well-intentioned.) Should you contact their doctors demanding to know whether the person has been given morphine and if so what will change now? Or possibly just throw up your hands and despair of ever understanding all the complicated information?
I think that the right approach is to make the most of the information available by following some research guidelines:

  1. As a friend or family member, only do research if the person who has cancer wants you to do so. Offer, but never insist or send information without permission.
  2. Preferably only one person should do (or at least co-ordinate) the research, and then feed back their findings to the person who has cancer. The person who has cancer can then decide what to ask the medical staff. If this is not possible, the person who has done the research should attend hospital appointments in order to ask any necessary questions. For instance it would be acceptable to ask if there are any alternatives if morphine is suggested.
  3. Question the source of information carefully. Is it unbiased? Who paid for studies, for instance? Was the research well designed (if you cannot tell, see what is being said about it by other parties)?
  4. Limit questions to the medical staff as much as possible to those which are relevant to the person’s current situation and treatment.
  5. Limit time spent researching and/or rely on a small number of trusted sources (the good ones will report on everything significant). Those trusted sources could include ones which are specific to the type and stage of cancer your friend or family member has.
  6. Remember that you can’t be expected to understand everything. As you do more research your level of understanding will probably grow.
  7. Look for positive stories as well as negative or worrisome information. It’s always good to have some hope.

You can find a short list of trusted cancer information websites by visiting Families Facing Cancer.

Please share your stories and feedback below. Has the internet provided information which helped (or didn’t help) your family? Does researching on the internet depress you, or help you feel more in control? Share these or any other thoughts by typing into the comment box. I’m looking forward to hearing from you.

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Recently I wrote about how being married improves outcomes for those with cancer. Spouses make a difference! (See the post)

What I also knew was that the improvement for people with cancer comes at a cost to the spouse. The additional stress, extra workload and role of caring all have the potential to adversely affect the health of those around the person with cancer. It would seem likely that the greatest effect would be on those closest – the spouses – though this depends on many factors.

Research has recently been carried out in this area, and it shows that there is an increase in healthcare needs and psychiatric diagnoses (mental health issues) amongst those who have a spouse with cancer. According to the researchers, this effect is greatest in male spouses. Perhaps this would indicate that the support structure of friends and family, which is more common amongst women, can alleviate the issues to some extent.

The study was limited in scope to those issues for which medical help was sought, and I would suspect that there would be a larger underlying issue of health issues experienced by spouses for which medical help has not been accessed. The researchers also recognise that there is a need for further study to ascertain ‘how to support the partner in the most effective way’. Families Facing Cancer will welcome such research, and the implementation of its findings.

Ref: ‘Influence on the Health of the Partner Affected by Tumor Disease in the Wife or Husband Based on a Population-Based Register Study of Cancer in Sweden’ – Katarina Sjövall, Bo Attner, Thor Lithman, Dennis Noreen, Barbro Gunnars, Bibbi Thorné and Håkan Olsson.

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