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Posts Tagged ‘diagnosis’

Millions of people around the world are diagnosed with cancer every year. When you first hear that a family member or a friend has been diagnosed with cancer, suddenly your world changes. There are many questions at a time like this. What exactly is cancer anyway? What type of cancer do they have? What will happen to them? How will other friends and family be affected?

How do you get the information you need to find out the answers to these and other questions? As I’ve mentioned before, when you are not the person with cancer, information can be hard to get hold of, and so seem especially important. That’s why we’ve produced a Free booklet to help. It’s called ‘Cancer – Back to Basics; First Questions Answered for Family and Friends’. Getting hold of the booklet is easy – just go to Families Facing Cancer and click the link on the right hand side which says ‘Get ‘Cancer – Back to Basics’ Booklet’. Fill in the form, and watch your email. You can get access to the booklet in just minutes.

I’d be glad to get your feedback.

With best wishes,
Anne.

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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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I’m in the process of writing a booklet for our website. As part of that I’ve been asking people what are the first things they want to know when someone in their family is diagnosed with cancer. One thing I have noticed is how different people are in how much they want to know. I guess it comes down to personality.
Some people seem to want to know every detail about the illness, and treatments. They want to read up on the medical details. I think perhaps this serves two purposes – it gives them something to do, and it makes them feel a little more in control.
There are others, though, who just don’t want that kind of detail. They may want to know whether the person is likely to come through ok, or whether they will die. Or they might not even want to know that. They may just want to be optimistic and hope for the best.
So which approach is right? Or does it even matter? Well, I don’t think there is a ‘right’ approach, and it’s fine to work with your natural personality. But the first, and possibly the hardest, thing to accept is – you are not in control.
If someone else has cancer, they are the only one who has control over that illness – or at least their response to it. You can find out all the technical information you want about the illness, get statistics and projected time-frames. None of that will tell you whether they will get better, or how long they have left.
What you can do is to accept that what will be, will be. If the person who has cancer wants you to research lots of information, or it makes you feel better, by all means do that. Help them as much as you are able, if that’s what they want. Just accept that you are not getting facts about them, only generalisations.
A far better focus, I think, is communication. A good relationship where you can talk about anything and everything will give you much more information about the person – who is after all much more important than the disease.
I would love to hear about your experience and your thoughts. What happened when your friend or family member was diagnosed? How much information did you seek out? Did it help? Please share your thoughts and comments.

Best wishes,
Anne x

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