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Archive for the ‘Cancer Diagnosis’ Category

Positive Mental Attitude – PMA. Is this the best approach to a cancer diagnosis?

This week the business community in Dorset, where I live, is reeling from the loss of one of its members. Sarah Howells, or Pash as she was better known, was the embodiment of a Positive Mental Attitude. When diagnosed with advanced breast cancer, she began a blog www.pmapash.wordpress.com to record how she was responding. Her attitude inspired everyone she came in contact with, both in person and online. Even when it later came out that this aggressive cancer had spread and her life would be cut short, Sarah had a positive attitude to her own death. She wrote that she had everything she could want in life – a loving family, friends and her true love – and so was not afraid to die.
So it seems this PMA of Sarah’s was a wonderful thing. But I think it comes with some problems. When someone has such a strong PMA it can be deceptive. Friends and family may feel that this passion can overcome the most overwhelming of hurdles – even though the medical situation is far from hopeful. This can then make it much harder if things do take a turn for the worse.
The other problem I am aware of is that the positive mental attitude can be hard to maintain all the time. People with cancer can feel that they are letting the side down when their feelings wobble and they veer into depression. Sometimes they even put a brave face on things and suffer in isolation rather than share how they feel, or use PMA as a mask for denial. Thankfully this did not apply to Sarah – she wore her heart on her sleeve (or at least her blog), and was not afraid to say when she felt things were against her.
But yes, there are benefits too. When you have a positive mental attitude it can carry you forward when nothing else will. And there are amazing stories of survival against the odds. So if someone you know with cancer has a strong positive mental attitude, rejoice. Just be aware of the pitfalls and ready to be with them on their down days or if all the PMA in the world is just not enough.

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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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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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Who in your family has been most affected by the diagnosis of cancer? The first answer is of course, the person who has cancer. But how about the rest of the family, friends and so on?
In my workshop, ‘Life in the Cancer Fallout Zone : How Cancer Affects Family and Friends’, I ask the course participants to create a list of people who might be affected by someone else’s cancer. It’s a long list, and usually starts with a partner or spouse. Other family members include parents and children (and the experience differs depending on the age of the child in both these situations). Then there are brothers and sisters, cousins, aunts, uncles and other wider family members. After that come friends – close friends, acquaintances and people who just know one of the other family members. Then there are colleagues, employers and even employees. And even, with today’s celebrity culture, people who have never met the person with cancer can be affected by hearing about them on the news. Any of these people can be affected by someone else’s cancer if it changes their life in some way, or provokes strong feelings for them.
The next question we think about is who is most affected, and the answer is always that the people at the beginning of the list are more affected than those at the end. It seems obvious. A partner is more affected than a cousin, for instance; an aunt than an employer. But the truth is that it is not so obvious. A partner may cope well, whilst the cousin feels they are falling to pieces. Or the employer may struggle to cope where the aunt is able to keep serene. Why is this? The truth is that although there may be more changes to the life of someone with a closer relationship, how well they manage those changes has little to do with the relationship. It depends more on the person themselves. What other traumatic events have they had to deal with in their lives? Are they a person who manages stress well? Do they have a support structure of friends around them who they can lean on? Are they independent, or used to depending on others? It can be difficult if the person they rely on is the one with cancer.
Sometimes time also changes who is coping and who is not. Someone who needs a lot of support at the beginning may get used to the challenges, and improve. Then those who have been supporting them may find they have their own issues and emotions to deal with now they have more time to think. Changes in the progress of the illness can also trigger new worries.
So how does this knowledge help? It’s important to remember that there is no right or wrong. A person is affected in the way they are. They have their own viewpoint, their own worries, their own journey. If one person is having a harder time, be there for them, but also make sure you deal with your own feelings. That way you are less likely to be the person struggling next week.

With best wishes,
Anne x

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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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