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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 as well as their feelings and fears over the illness. (more…)

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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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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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As I’ve been discussing in previous posts, there are times when someone who has cancer chooses not to pass on all the information about their condition to those around them. Today I’m going to look at why they might do that, what effect it can have, and how the difficulties might be avoided.
These are the main reasons for secrecy that I am aware of:

  • The first is that people may not be ready to face the truth themselves. Telling someone else all about your illness leaves you no room to avoid or lessen the truth. People sometimes cope with cancer by ignoring it as best they can. They may have treatment but otherwise just pretend nothing has changed. So this may be the reason, if someone is downplaying the significance of their cancer, or doesn’t want to talk about it.
  • Another option is that the person who has cancer is depressed. They may feel much negativity about their life and at the extreme may not even be sure they want to survive. In this case, the person may not wish to share much about their illness because it would mean exposing their feelings, and maybe having pressure put on them to accept treatment.
  • There is also the case where someone wants to explore alternative methods of treatment, or simply does not believe that medical intervention is right. In this case, the person might withhold information in the belief that their family’s feelings could sway their decision. (Those who involve family members in their treatment decision are likely to have a greater degree of medical intervention than those who don’t.)
  • Lastly, I think people with cancer often keep information to themselves in the belief that this is a way of protecting those around them from difficult information.

The damage that can be caused by these kinds of secrecy are mostly mental and emotional.
Relationships may be permanently damaged because they cannot flourish in an environment of secrecy.
Cancer can give family members time to adjust to the future loss of that person. But when information is withheld, and the person dies when their family were expecting them to recover, it makes it harder for them to adjust and delays or disrupts the grieving process.
There is also the worry that can be generated. Because I do not know where my mother’s primary cancer was situated, I cannot make sure I guard against that specific cancer myself. This is a worry I have had to deal with.
Then there is the opportunity that cancer gives for growth – the inner strength that people find. Keeping back information denies them the opportunity for that growth.

My feeling is that information must be passed on. Cancer does not only affect one person, and so the information does not belong only to that person. But I do recognise all the above challenges and issues. So I think that time should be spent with each person who is diagnosed, both alone and with their family members. People should be assisted with passing on the information, guided into doing so where they are reluctant, and any fears of pressure being put on them addressed. Those with cancer should be protected from being forced into choices they don’t want to make – which may be made less likely with education of family members.
This kind of support service is already available to some after diagnosis, so please share with me what kind of support you and your family received. I look forward to you joining the debate.

With best wishes,
Anne

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Hi there.

Last time I was talking about the new initiative in the UK of providing information for those with cancer in the form of tailored Information Prescriptions. (To read this post click here).

As promised, this time I am going to begin addressing the issues that are raised by this initiative. As with any new way of doing things, there are always advantages and disadvantages. These need to be weighed up and concerns addressed to ensure the best possible results from the new scheme.

So what are the concerns?

First there is the issue of how they will work in an appointment. How will the health professionals find the time to select the relevant pieces of information, when our health services are already stretched to breaking point? If they are sitting and going through information on a computer, will this lessen the human interaction which is vital to feeling confidence in your doctor (you may have experienced this issue in other situations, where sometimes receptionists seem more interested in their computer screen than in you)? Who will have time to go through the information with you to make sure you understand it and what it means for the person with cancer, and the rest of the family?

Secondly there is the issue of what happens next. I believe that although giving information is a good first step, it’s simply not enough. Information has an emotional impact (as you may notice if you have ever read the side effect warnings which come with most prescription drugs). With cancer this is particularly so. Often information is given slowly, to give time for all concerned to get used to it. But if the prognosis is not good (for instance), giving tailored information may reduce the possibility for hope. This in turn can lead to depression, which has been shown to worsen survival chances. So is there a possibility of too much information? These issues may be able to be addressed, but only by trained professionals having the time to spend with individuals exploring their concerns. This needs to happen all the time, not just if someone asks for that help.

Lastly there is the issue of privacy and confidentiality. There are many cases where someone with cancer chooses not to pass on all the information they have to others in the family. (I believe, though I don’t know for sure, that this was the case with my own mother.) But if someone has been handed a highly tailored set of information about their cancer, and a family member asks to read it, where is their option for keeping things to themselves then? It is all there in black and white and you know that what is there reflects how things are. As a family member you may think ‘Fantastic! I don’t want there to be any secrets.’ But do you have a right to that information? Should you have a right to know? This is like opening a can of worms, because there are many reasons why someone may choose to restrict the information they pass on. I’d love to know what you think. Have you experienced such a situation yourself? Let me know in the comments, and next time I’ll look into what the reasons are for this kind of secrecy, the effects it can have, and what should be done to address the issue.

See you then,
Anne

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Information matters! Research has shown that for women having a hysterectomy, having enough information before the surgery produces a better result. Being informed improves your health!

If ever there was a condition where much information is needed, surely cancer must be it. When someone is diagnosed with cancer, often everyone in the family feels they have stepped into a different world. A different language is spoken, and suddenly processes of the body we rely on every day are called into question. So I was interested to learn that the way information is supplied at the point of cancer diagnosis is set to change in the UK.

In the past, up to 39% of patients have been offered NO written information at the point of diagnosis. Where information is provided, it has been in the form of leaflets or other large chunks of information. This has to cover a lot of different scenarios, and so it may be unclear which parts actually apply to the person, their cancer and their treatment.

The new initiative is known as Information Prescriptions, and there is currently a small test being carried out, whilst all the information is compiled with a view to the system beginning to be available in 2010. In this initiative, the health professionals will compile a set of information which is relevant to the particular person, their diagnosis and agreed or possible treatments. This will be done in the same appointment where the diagnosis is given.

The advantages I see to this system are :

  • There will be less information to go through
  • The information will be available straight away
  • The information will be specific to the actual diagnosis, and situation (as cancer is such a diverse disease)
  • The information will reflect, and be relevant to, any decisions that have already been made
  • Any choices that are still to be made can be shown clearly – with information to help in making them
  • The information may be available in other formats, eg as digital documents, and this may help with spreading it through the family
  • The information can more easily be provided in other languages, for those who do not speak English as their first language, or as audio files for those with restricted vision

I regard it as very positive that the information provided to those with cancer and their families is being thought through so carefully. But of course, there are possible issues that this progress raises, which must be considered. I will begin to cover these in my next post. In the meantime, use the comments facility to let me know what you think. Are you in favour of this initiative? What information were you able to access through the health professionals? How does this compare with how things are done at your hopsital?

Until next time,
Anne

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When someone is diagnosed with cancer, the actual word ‘cancer’ might not even be used. The doctor might say ‘carcinoma’ or ‘leukaemia’ or some other technical word. You may have come across these words before, but do you know what they actually mean?
It’s like learning to speak a whole new language. The doctors already speak this language, so they may not realise if you are confused. Or you may be a family member who doesn’t even get to speak to a doctor.
Confusion about what is actually going on could cause unnecessary fear, and we want to avoid that. So we’ve put together some information on our website to explain the words and phrases you may come across. We’ve kept it simple, and you can search for more detailed information later if you need it. Why not take a look at Cancer Words Explained to clear up any confusion? If there’s anything you still don’t understand, or the word you’re looking for isn’t on the list yet, just send us an email and we’ll get right on it.

Knowledge is power.

Anne x

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