» Families Facing Cancer – Helping carers to cope with cancer

Cancer Caregivers Must Make Difficult Decisions

Anne Orchard — Thu, 19 Aug 2010 10:16:05 +0000

During the course of your loved one’s fight with cancer you may be required to help them decide on a course of treatment. There may be times when you alone must decide what action should be taken. This can be a complex, burdensome responsibility that I have addressed in my book Their Cancer – Your Journey:
There may be times during your loved one’s treatment when you are asked to make some difficult decisions. Should they even be told they have cancer – particularly if they are either very young or elderly and confused? Should the cancer host be resuscitated if they have a heart attack? Nobody wants to be put in the position of making this sort of decision, but it is possible that this may fall to you. How do you handle it? Ideally you won’t have to do it on your own. If you can discuss the matter with others who are affected, it should be easier to make the decision, unless there is a real difference of opinion.
First of all it’s important to look at what is the ‘default position’. What is being done while the decision is being made? In the examples I gave above, the default would probably be not to tell them in the first, and to resuscitate them in the second.
My view is that wherever possible the person with cancer should be the one to make the decision, though there is nothing wrong with a supportive family discussion. This means that even if the medical team is worried about telling your loved one something about their condition, you at least talk over the subject with the person who it ill. If they really don’t want to know, they will probably change the subject or just plain not hear you – and then they will have made that decision. But if your loved one wants to know, then they have a right to.
Many people have been told they were dying, and used this as an opportunity to find a sense of peace – possibly one that has escaped them all their life. Why deny them that? You won’t go far wrong if you stick to the principle you’ve been using already of talking things through and accepting that the cancer host is the master of their own ship.
Audrey Jenkinson, in her book Past Caring, describes how her mother expressed quite definitely that she did not want to be kept alive, or resuscitated. She was perfectly able to make that decision even though communicating it was difficult. It proved hard to honour that request, as medical staff will always try to revive someone unless they know expressly not to.
In reality this means that when someone is admitted to hospital as an emergency, there will be no time to take ethical decisions. One person at death’s door looks much like another and the emergency team will not have the information they need unless they are given it. So if your loved one has expressed their wish to go out gracefully, you will need to make sure everyone knows. It may mean you have to be with them on your own when they die, if you are caring for them at home.
If your loved one has gone past the point of being able to make their own decisions, and it is just a matter of time, don’t be afraid to talk over what treatment they are being given with their medical team. Keeping their body in this world as long as possible is the remit we have given to our health services, but it may no longer be the approach that serves this person best. Of course, in order to take these or other difficult decisions, you have to be prepared to let your loved one go.
Extracted from Their Cancer – Your Journey ©2008 Anne Orchard
Many factors affect the cancer patient’s ability to make decisions regarding their own treatment. Mood, age, personality, and progress of the disease are but a few. It is important that you know as much as possible about their current prognosis and the available treatment options to enable you to give sound advice or to make critical decisions when necessary.

Talking to Children About Cancer

Anne Orchard — Thu, 22 Jul 2010 12:21:02 +0000

When a family member receives a cancer diagnosis, one of the things you may fear most is discussing this devastating news with your children. If you’re wondering how to best approach the cancer subject with your kids, here are some hints that may make the conversation easier.

First, take into account the child’s age. Older children need more information than younger ones. Essentially, most professionals divide children into two age groups with regard to information about illness.

Children under the age of 8 – These children don’t need a lot of detailed information. They should be told that there is a part of the patient’s body that is not working the way that it should and that it will need medicine or an operation to get better. Children this age don’t really need much information beyond this about the disease, but they do need to know how the illness and its treatment will affect their lives. For example, if the cancer is in a parent, they may see big changes at home, and they should be prepared for these. However, if the cancer is in a relative who does not live with you, and for whom you will not be providing regular care, they may need very little further information.
Children over the age of 8 – These children can handle, and will expect, more detailed information. But, again, the age of the child must be taken into account. Older children may be scientifically interested in the disease, and may benefit from reading material and pictures aimed at their reading and maturity level. They can also foresee consequences better than younger children – but not as well as an adult. They may have many questions about the future. Encourage them to ask questions, and answer them as honestly as you can. But, don’t plant questions that they may not have had on their own.

It’s important to realize that, to a large degree, your children will react to a diagnosis based on your reaction. If you are obviously worried and upset, they will have more fear than if you are calm and reassuring. This in no way implies that you should lie to your children about the diagnosis. However, you should not plan to talk to your children when you are very upset.

A diagnosis of cancer in your family is not something you should try to hide from your children. They will know that something is going on – and if you hide it, they are likely to think that the situation is very serious. It’s far better to tell them what’s going on from the very beginning; though you may choose to give them pieces of the picture a little at a time.

Be certain to prepare your children for a visit to their loved one, if necessary. If they haven’t paid them a visit for a while, many physical changes may have occurred. For example, a child could be very frightened by a loved one’s sudden hair loss, if they are not prepared for it ahead of time. Remind your child that their loved one is still the same person, but that the medicine and the illness have made them look a little different. Once prepared for such a change, most children handle it quite well.

When the prognosis is of your loved one’s cancer is bleak, it is important to talk with your children about the future. Again, keep the information basic and geared toward their age level, but prepare them for their loved one’s death if it is inevitable and quickly approaching.

As with many parenting challenges, you’ll find that you learn as you go in regards to discussing cancer with your children. Once you’ve given them the basics, let them know that they can ask you questions whenever they have them and then let them take the lead. Some children will want more information than others. Listen to them carefully and follow your instincts. Children are very resilient, and with a little care in how the subject is approached, they will adjust to the new situation appropriately.

Further Resources

Living Sunny Side Up
Helping Children in Families with a Parent Diagnosed with Cancer

How Do Others React to the Cancer?

Anne Orchard — Thu, 15 Jul 2010 09:46:19 +0000

As a supporter of a cancer patient, there will certainly be times that you will need to talk about your feelings, fears and frustrations with someone who is not as intimately involved in the journey. There will be things you need to say that you simply can’t say to your loved one with cancer. Talking with others about your own journey and experiences throughout the process is healthy and healing. However, you may find that the people you expected to be your best shoulder are reluctant, shying away from you when you need them most. On the other hand, people that you never expected to be available for you will step up to the plate unexpectedly. An excerpt from “Their Cancer: Your Journey” details this often disappointing phenomenon.

When facing a cancer diagnosis, one issue you (and the person who has cancer) will face is the attitudes of other people. There are many different ways that others will handle the news. Some may have difficulty talking about the cancer at all. They may go to great lengths to avoid the subject. You may even find that they seem to be avoiding
you, or the cancer host.
You may feel very hurt at what seems like indifference or lack of compassion. In fact this behaviour probably shows that they have some unresolved issues that make it hard for them to deal with illness. You may have no idea what has happened in their past for them to behave that way. It may not lessen the hurt you feel, but try not to blame them.
Other people may have a ‘poor you’ attitude. They will be pitying in the extreme for the ‘terrible situation’ in which you find yourself. This could feel good in one way. You are getting sympathy for your situation, and it’s nice to know that someone has noticed how awful it is! At least they don’t think the person with cancer is the only one who deserves sympathy. So accept their expression of sympathy the first time. Be especially glad if it is accompanied by genuine offers of practical help or emotional support. But if you find you are on the receiving end of endless streams of pity from some people, be wary. Whilst they may truly care for you, if they belittle your ability to cope with the situation this attitude could rub off on you. Both you and the person with the cancer need to be empowered to deal with the challenges ahead, not brought down to the victim mindset. It may be that you have to tell people, “Thanks for the sympathy, but I know we’ll get through this.” Possibly you could add, “What you can do to help is . . .”. If they continue to be negative, you may choose to limit the time you spend with them.
On the other hand, some people will be absolutely amazing. Firm friendships have appeared seemingly from nowhere in the face of adversity. When my first marriage broke down, my colleague,
Jenny, took me into her home while I looked for somewhere to live.
She talked to me as I made difficult decisions for the future and was the most staunch supporter I had at the time. She was a truly lovely person and a deep friendship came out of that experience. So be prepared to be surprised and delighted by how some people come through for you.
The truth of the matter is that other people’s reactions are just that – theirs! Whilst it is natural to feel happy or sad about how others behave, the fact is that their reaction is not about you. It relates to who they are, the experiences they have gone through and how they handle issues in their own lives. Don’t take it personally. Just make the most of those whose attitude helps you.

As you can see, we all will have many different attitudes to cope with during the cancer journey. You’ll quickly learn who you can count on when you need a shoulder, a hug, or some sound advice. Lean on those people and be appreciative for the support that they have to offer. But, don’t be too hard on those who are unable to support you during this time. You don’t know the road they’ve traveled. And, you never know when your journey might inspire them to explore their own fears and come to terms with whatever prevents them from reaching out.

With Cancer or Not, Death is a Natural Part of Life

Anne Orchard — Thu, 08 Jul 2010 10:18:56 +0000

Everyone recognizes that death is a natural part of life, but most people do not dwell upon it When cancer is diagnosed, however, everyone involved begins to think of death, if only fleetingly. Terminal cancer of course makes these thoughts more than fleeting. Dealing with this overriding concern of imminent death is discussed in my book Their Cancer – Your Journey:
Is it timely to think about death if your loved one has only just been diagnosed. Surely it’s far too negative to mention death at this point? It’s unlikely (unless you have received a very late diagnosis) that the medical team has raised the prospect of death. However there is a big ‘But’ to consider. Many advances have been made in the field of cancer treatment; but it is still something that people die from. In fact, as our ability to treat other conditions improves, it becomes ever more common that cancer is what will finally take us out of this world.
This means that whenever the word cancer is mentioned, the thought of the chance of death comes swiftly after. You will probably be trying to suppress it. You have almost certainly heard of the benefits of positive thinking, and want to apply it. The trouble is that the little voice in your head that says “What if they die?” is not easy to silence. The more you push it down, and refuse to listen to it, the stronger it is likely to become. I’m not telling you it’s a good idea to dwell on the likelihood of your loved one’s death. I’m just saying you need to acknowledge that thought.
The truth is that death is certain for all of us. It’s a natural part of life. You can think of it as being like the passing of the seasons. Our birth and death are as woven into the fabric of nature as the growth and falling of leaves on the trees each year. Cancer is by no means an inevitable death sentence, but we all have to go eventually. Who can say how long we are supposed to be here?
If your loved one’s cancer does lead to death (either now or in many years’ time), there is no point in resisting this. Yes, you will do everything in your power to support them and their health, but if that proves to be to no avail, so be it.
Children have a very practical attitude to death. They feel the grief and sadness as deeply as we do, they just don’t let it linger. They understand instinctively that life goes on. Once their grief has been expressed and noticed by others, they are likely to switch rapidly to getting on with the business of their lives, such as playing with their friends. They have a natural approach.
Society’s attitude has a great influence on our perception of death. Only a hundred years ago, most families would have experienced death first hand. Children died in infancy, mothers died in childbirth. In my husband’s family, his great grandfather was given the same name as another baby who died only a year before. This would be unthinkable now, but I think it shows how naturally death was treated then – because it was more common.
These days we have removed death from the family and into hospitals. The result is that it has become surrounded by an air of mystery. It also seems that death is almost always regarded with horror – instead of as a natural stage which we would all welcome at some point in our lives.
So do not fear death. Or if you are feeling fear, notice what is at the root of the fear. Are you afraid of being lonely, or of a lack of support? Would you desperately miss spending time with a person who brings joy into your life? Be honest with yourself, face up to your fears, and you will do much to still that little voice. This will then allow you to give more concentration to what you can do now to help.
As Deepak Chopra said in The Book of Secrets “Only by facing death can you develop a real passion for being alive.”
Most people have learned to accept the inevitability of death at an uncertain time in the distant future. The possibility of someone dying from cancer in the near future, however, is not so easily accepted. It’s comforting to be optimistic and hope for the best outcome, but it is also a positive step to recognize and accept the possibility, and to prepare for it.

Being Told the Cancer is Terminal

Anne Orchard — Wed, 30 Dec 2009 11:44:08 +0000

When you are told the cancer is terminal, what does this mean?

There are two different scenarios in which you may be ‘told it’s terminal’. One is sort of by default, where the cancer is diagnosed but no treatment to cure is offered. The second is where much treatment has been tried, but it turns out to have been a losing battle, or where time has allowed the cancer to grow and damage the body beyond repair. At this point there is no further purpose in trying to get rid of the cancer. These two scenarios are in fact very different.
The first is the situation we found ourselves in when my mother was diagnosed with secondary brain tumours. Even then, I’m not sure anyone really spelled out at the beginning that this meant she was likely to die. That’s just not what they say. In any case the medical staff would certainly not have been able at that stage to answer the next big question – how long do we have together?
In fact they would have been as well not to answer. My friend’s sister, Fern, was also in this kind of situation. She was diagnosed, after much uncertainty and pain, with a tumour on her spine. Fern was told that the hospital could offer treatment, but it would only prolong her life for a short time. (The original projection for her life was two weeks.) Fern’s reaction was to demand the treatment – and she did the rest. She got better, raised her children and is still healthy today, over 20 years later.
This is why doctors are often reluctant to make predictions, because they know how easily they could be wrong. So even though it is frustrating not to have a crystal ball, you should regard this as a good thing. The uncertainty means that there are still possibilities – your loved one isn’t gone just because someone handed them a diagnosis. The uncertainty works in your favour.
The second scenario is more like the situation we were in when the Macmillan nurses finally said to my father and me, “You do know she will die very soon, now, don’t you?” Although of course we were not glad to lose her, there was a great feeling of relief. Finally someone had given us an indication of how much longer it would be. They were able to let us know that she would be gone in days rather than weeks, and in fact she lived about a week and a half after that day.
This may seem late to get some kind of a timescale, but I’m afraid that is the nature of the human body. It’s unpredictable, because the thoughts of the person living inside it determine so much of how it lives, and fades. There are people like Fern who simply won’t be told they’re going to die, and others who are expected to live for a few months, but slip away within weeks.
It is likely that you will not find out that you are in this second type of scene until the end is close at hand. Don’t be shocked and horrified if either you or others (including the cancer host) seem relieved. Being ill with cancer, or supporting someone else who is, can be just plain exhausting. If you’re told you can’t win, then it can be very peaceful to accept that this phase of life is ending, whether it’s your body that’s going to die or another’s.
If you reach this time it would be a good idea to visit www.soulmidwives.co.uk, and to talk to those who can ease your loved one’s passing. You can also explore our information on Bereavement and begin addressing your feelings about the loss to come.

This is an extract taken from ‘Their Cancer – Your Journey’ by Anne Orchard. To get your own copy of this book visit Their Cancer – Your Journey Book Information

Further Resources

More Information on End of Life Issues

Information on Bereavement

Soul Midwives

Family Cancer Issues – Acknowledgement of a Stressful Time

Anne Orchard — Fri, 11 Dec 2009 12:04:44 +0000

Stress and Cancer go hand in hand. You may not be the one that is ill, but your feelings and needs are just as important. Face cancer with your family, by dealing with your own stress.

When someone in your family has cancer, how you feel can seem to pale into insignificance. Everything becomes about the person who is ill. If you were a machine, then you would feel totally neutral about the situation. None of us is built that way, though. We feel deeply, especially when something bad happens to those we care about. I’m glad humans are this way. I wouldn’t like to live in a world where nobody had regard for anyone else and how they were feeling.
Being made of flesh and blood (plus an active mind and a vivid imagination) brings its challenges, though. That imagination is where our feelings of stress come from. From fear and worry about the future. When you are dealing with what is happening in the present moment, there is no room for stress. You simply get on and cope with whatever is put before you.

Cancer Impact

Perhaps this is the first time someone close to you has had cancer, as it was for me when my mother was ill. In this case you may know little of what to expect, and this will almost certainly produce fears of the unknown.
On the other hand, you might have been in a similar situation before, in which case all the emotions you felt then will probably be re-triggered. The challenges you faced in the past become hurdles you expect to have to get over again, even though all cancers and all people are different and so the hurdles will be different too.
Either way, most of the stress you feel is to do with what you fear will happen tomorrow or after many tomorrows. This doesn’t make the stress any less real for you right now. There are ways to deal with that stress. The first is simply to notice how much of it is to do with what’s happening right now, and how much of it relates to what may or may not happen in the future. Mark Twain famously said “I’ve had thousands of problems in my life – most of which never actually happened.”

You can start your thinking about your loved one’s cancer by letting go of as many of those future issues as you can. This will give you some emotional respite, which will allow you then to cope better with the road ahead. To get a handle on your emotions, answer the following:

How are you feeling about your loved one’s illness?
What do you know about the situation?
What do you want to know?
What are your biggest worries or fears?

This process will allow the reality to sink in a little. It takes time to adjust to a change as big as this, but you can adjust – probably better than you could possibly imagine now. I often hear people say such things as “I just don’t know how he/she coped with that situation.” In fact when you have no choice, you can cope with the most extreme realities. Whatever the cancer impact on your family, acknowledging and dealing with your own stress can go a long way to reduce that impact.

This is an extract taken from ‘Their Cancer – Your Journey’ by Anne Orchard. To purchase a copy of this book visit Their Cancer – Your Journey Book Information

More information on Managing the Stress Associated with Cancer
More information on Emotional Issues
More information useful at Diagnosis

Why Do People Always Say The Wrong Thing?

Anne Orchard — Fri, 26 Sep 2008 13:39:58 +0000

Lately I’ve been visiting forums for people affected by cancer. One issue that seems to cause great hurt is when someone inevitably says ‘the wrong thing’. It’s something I touched on in my book Their Cancer – Your Journey, so I decided to share my thoughts with you:

“Shock can make people say the most appalling things. In the UK we have an expression ‘open mouth and insert foot’ – very strange I know. I’m not sure why we refer to saying something insensitive as ‘putting our foot in it’ (although it may have a farming connection), but we do. Sometimes it doesn’t even have to be caused by shock, just by not thinking before speaking.

You will probably find that many people say ‘the wrong thing’ to you. I could quite possibly be one of them. You could get horribly offended about that. You could even tell yourself for years about how thoughtless they have been. If this has already happened to you, then pause for a moment. Can you remember a time when you said something you regretted? It could have been in an interview, or the heat of an argument. You probably knew it was the wrong thing to say almost at once. Did you apologise and fix the issue then, or let it fester until later?

None of us is immune from saying something that could cause offence, so don’t punish someone who makes that mistake. Tell yourself “Oh, they didn’t mean it like that.” Then let it go and move on. If it’s a big issue, and you can’t do that yet, then talk to them. The person may not even realise they offended you, and may quickly be able to make amends. Just be aware of the advice often given to couples. Don’t attack the person for their mistake, this will only put them on the defensive. Instead, talk in terms of how their comments made you feel. Don’t be attached to how they respond, just know that you’ve let it out and let it go.

Another problem that can occur is if you become scared of saying the wrong thing to your loved one. You may dumb down your conversations with them for fear of offending with your words. Doing this, though, is far worse than making a blunder. What your loved one needs more than ever is to be able to communicate with you. They can’t do this if you are watching your words so much that you don’t say what you really feel.

So please don’t hold on to things that others say to you, especially when emotions are running high. This will free you to speak fearlessly as well. If you have said something you regret, let the person know. Forgive yourself first, and then tell them what you wish you had said or done.”

Maybe you think that what your friend, relative or acquaintance said to you is completely unforgivable, but I hope not. Holding resentment towards another person will do you more harm than them. If you must, have a moan about their thoughtless words, but then let them go. Then you can concentrate on dealing with your feelings.

Anne Orchard

» Families Facing Cancer – Helping carers to cope with cancer

Cancer Caregivers Must Make Difficult Decisions

Recommended Reading

Talking to Children About Cancer

Recommended Reading

Further Resources

How Do Others React to the Cancer?

Recommended Reading

With Cancer or Not, Death is a Natural Part of Life

Recommended Reading

Being Told the Cancer is Terminal

When you are told the cancer is terminal, what does this mean?

Recommended Reading

Further Resources

Family Cancer Issues – Acknowledgement of a Stressful Time

Stress and Cancer go hand in hand. You may not be the one that is ill, but your feelings and needs are just as important. Face cancer with your family, by dealing with your own stress.

Cancer Impact

Why Do People Always Say The Wrong Thing?