The Cancer Directory

The important thing is not to see a counselling relationship as being only about helping you when you are in extreme distress or seeing it as meaning that there must be something wrong with you. Having regular counselling throughout your recovery process can completely transform a potential nightmare into a true blessing, helping you to grow and even benefit in the long term.

Preparing for the Worst, Working for the Best

Another helpful role of the counsellor is to help you, if you feel you need to, face and plan for the worst-case scenario that could happen. You can then spend much less time worrying and fantasizing about it, and get on with creating a different, much more positive reality. This may mean that you choose to use some of your early sessions with your counsellor thinking about how you would feel, and what would need to happen if everything went really badly.

If you do this, the level of detail that you go into is up to you, but it could involve thinking right through the practicalities of whether you have made a will, what financial resources are available for your dependants, who would care for them if you were unable to, and how you would like to be cared for if you become disabled and dependent. You can even go into the details of where you would like to die and what kind of funeral you would like to have. This will inevitably force you to face your feelings and beliefs about death, so you may also need the help of a spiritual advisor. This may sound extremely grim, but most people who have employed this head-on approach have found it tremendously liberating. Paradoxically, any step you take in the direction of both healing old wounds and preparing to let go of life will enable you to live all the more fully. This, in turn, will enhance your energy, vitality and health and, consequently, the chances of stabilizing your disease.

Healing Your Emotional Wounds

Another thing that might emerge from this process is the urge to complete unfinished emotional business with anyone against whom you are holding a grudge, or by whom you feel you have been aggrieved or hurt. It may not be necessary to go anywhere near these people to do this work – it may be quite possible to make your peace with others during your counselling sessions. This often has very surprising results, as the dynamics of these old and difficult situations and relationships can often change dramatically once you have shifted your position.

Attending to these background emotional issues will be part of your long-term Health Creation Programme (see Chapter 9) and be best addressed after you have been through your treatment.

Facing the Cancer Diagnosis: Understanding Your Reactions and Identifying Your Needs

Now that we have looked at the psychological foundation for recovery, let us take a look into the question of how you are feeling now. It is very possible that, having recently had a diagnosis, you are still in a state of shock. It is important to understand the effects of shock and how to deal with it.

Dealing with shock

The diagnosis (or re-diagnosis) of cancer can put you into severe emotional and physical shock. Extreme shock is an odd thing. You may feel that you are able to cope but, in fact, your thinking and reaction times may be severely impaired. If you do receive bad news when you are not expecting it, it is safer to wait at the hospital or surgery until someone can come and pick you up. It is certainly better not to attempt to drive or go out onto public transport while you are in such a state and feeling so vulnerable.

It is estimated that in a state of shock, less than one-tenth of what you are told is retained. Because of this, the most important thing to remember is to never make important decisions while you are in a state of shock! Yet, medical personnel may rush straight from telling you your diagnosis and prognosis to explaining your treatment options.

The sense of urgency created by doctors at the time of diagnosis is usually exaggerated. Yes, it is a good idea to move ahead with appropriate treatment for cancer as soon as possible after diagnosis, but the treatment will be far harder to cope with – and may even be less effective – if you are in a state of shock and fear, and feeling out of control. There is clear evidence that being well prepared psychologically, with a positive attitude towards treatment, conveys not only psychological and quality-of-life benefits, but also a distinct survival advantage.

It is therefore highly advisable to take the time you need to:

• go through your emotional reaction to the diagnosis

• think about what seems the best treatment option for you (and this may even be having no treatment)

• prepare yourself mentally, physically and practically for treatment, before it starts.

Possible emotional reactions to expect

Everyone is different. Initial reactions to a diagnosis of cancer can range from extremely strong emotions to total numbness, and any degree in between. Your state can also vary profoundly from one hour to the next, so that you may find yourself suddenly in a highly emotional state, unexpectedly feeling out of control.

If you need to withdraw, withdraw. If you need to scream, shout and rage, then scream, shout and rage. If you need to weep, please allow yourself to let go completely and grieve over your situation. There is no need to keep up a brave face. This will not ultimately serve you, and will definitely delay the process of your being able to get your feet back on the ground, able to make clearly thought-out decisions about the way forward. Take all the time you need to go through your reactions. Do not be afraid to cancel work and social engagements if you need to. You have effectively been bereaved, and everything will go much better if you allow yourself the proper space and time to begin to come to terms with what you are experiencing.

There is often a sense of intense disbelief and the recurring question of ‘Why me?’. Many people go straight into fear, or even terror, and this can be felt both mentally and physically. Such extreme fear can cause a racing heart, sweatiness, a feeling of weakness and sometimes diarrhoea. The mental anguish can make it impossible to concentrate, perform normal tasks, keep up a social front or sleep properly. Over time, this all-pervasive fear can become focused into more specific fears, such as fear of pain, disability, disfigurement, hospitals and doctors. But underneath it all, it is usually the having to come face to face with one’s fear of death and the deep uncertainty caused by the diagnosis that causes such a strong reaction.

Often, the next feeling experienced is grief. This may be grief at the thought that you might die and leave others behind, or grief for yourself and the loss of your sense of a certain future. Often, relatives, too, will go into anticipatory grief. This can sometimes be so extreme that you find people treating you as if you had gone already! Combined with the withdrawal of friends or colleagues who are too embarrassed to talk to you about what is happening, you may be left feeling abandoned and isolated – as if you have passed through an invisible glass wall and are no longer part of the ordinary world around you.

You may find yourself experiencing a mixture of feelings, such as jealousy, resentment or even anger, towards those who are still healthy. You may dread the thought of becoming dependent on people with whom you do not wish to have that degree of intimacy, or even feel guilt at the thought of not being able to fulfil your ordinary functions. Of course, this will be tempered by the enormous love, closeness and gratitude you will feel towards those who stick with you through this crisis, with whom your relationship will deepen and grow immeasurably.

There can then be the other side of the story. You may, as already mentioned, have been expecting something like this to come along. You may even welcome the illness, feeling that the whistle has finally been blown on what has been an unhappy or unproductive state of affairs in your life. You may even find yourself feeling excited by the challenge of cancer, experiencing it as a much-needed wake-up call. Some may even welcome the possible imminence of death.

Do not think it is odd if you feel this way. Many people feel this way, especially if life has been really tough.

You may have beliefs or even a deep ‘soul memory’ that dying is not so much an ending as a transition into a far freer state of being and, thus, actually look forward to making the transition. Or it may be that life has been so hard for you that dying seems like a blessed relief. But, on a more pragmatic level, it could be that the diagnosis and possibility of death make every moment of life seem extremely precious and exciting and that, in one fell swoop, any sense of boredom or depression with life evaporates.

There is also another phenomenon that people often experience – which is a sense of being almost unnaturally calm. It is as if you are at the still point, within the ‘eye’ of a hurricane. While relatives and friends are being thrown into chaos by the new development, you may find yourself strangely quiet and ‘present’ with the ultimate truth and reality of your situation. It is as if there is a spiritual acceptance of the truth of what is happening to you and, from somewhere deep inside, you are being given the inner strength to deal with it.

If you have received bad news, take all the time and space you need to go through your reaction before making treatment decisions.

Ask yourself:

• What am I feeling now about my diagnosis?

• How am I reacting to my diagnosis?

• What help do I need at this time?

Getting immediate help

Find out what support resources are available at the hospital where you have been diagnosed, or at your regional cancer centre, which may be larger and better equipped. Next, find out what help there is from your GP, community nurses or local hospice, then find out if there are any local or national support groups or local private counsellors who can help you. Do not be afraid to ask for the help you need, and use it for as long as you need it. Getting good support for your emotional state will greatly help you both in the decision-making process to follow and in getting you the best outcome from your treatment.

It may be that your GP, community nurses or health visitor could be called to the house to give you immediate support, or that a local support group could provide someone to keep a close eye on you for the first week after diagnosis. Certainly, if you avail yourself of the services of a Health Creation Mentor, they will be particularly vigilant in this initial time, helping you to access the best possible support available in your area (tel: [phone]).

It is very likely that you will need crisis counselling at this time to help you get through your initial reaction. This kind of counselling is beneficial and rather different from the kind of counselling you will need later on to help you get well again. This may also be the time you may wish to reach for the help of spiritual guidance from where you usually worship, or for a spiritual healer. There may be many questions you wish to ask, but the main role of these spiritual helpers will be to try to help bring you into your still, calm centre, where you may find peace and inner strength during the difficult times.

Finding Support

• Your local cancer unit or regional cancer centre

• Specialist nurses such as Macmillan, Marie Curie or practice nurses

• Your local hospice (which are not only for the seriously ill)

• Your GP

• Support groups (see the Resources Directory, pages 384–404)

• Counsellors (private or through your GP surgery)

• Spiritual advisors or healers (see the Resources Directory, pages 372, 404–6).

Also, find out what support is available from:

• Your family

• Your partner

• Your friends

• Your colleagues or occupational health department

• Your local church or relevant religious community.

Use the Resources Directory to see what specific help may be available from support groups or charities dealing with your kind of cancer or resulting disabilities, and any problems you may have arising from the treatment. Help may also be available to deal with the financial, legal or social problems due to your diagnosis.

Find out what help is available nationally from:

• Illness-specific support groups

• Disability-specific support groups

• National charities

• Legal services

• Social Services

• Citizens’ Advice Bureaux.

Telling other people

When you first become ill, especially if there is a health crisis or serious operation to go through, telling kind enquirers over and over again about what is happening can be very upsetting and draining, both for you and those close to you. Sometimes, it can help to delegate this task to a supporter who will be the message bearer, only putting through those you have placed on a special list.

As you emerge from the shock of the initial impact, it will be time to think about telling other people. You may initially feel like hiding what you are going through. A common reaction is to try to keep life as normal as possible, keeping what you are going through private. This is your choice and can be effective, but it can also be a stressful, lonely way to go about things, leaving you compromised at crucial moments when you may need help.

It is better, if possible, to enlist the help of friends and colleagues. Everything will be a lot easier if you can confide in those you work with so that they give you the best of their support now and in the future, and excuse from duties at short notice, if necessary. Of course, if you don’t want them to keep asking how you are, you can make this clear at the beginning. If you are asked something like this, be honest as it helps them know what to do.

The other big consideration is what you tell your family, particularly aged parents and children. Often, people do not tell their elderly parents what they are going through – partly to spare them the upset, and partly to spare themselves from having to deal with their reaction. Of course, everybody has to be the judge of their own situation but, if a parent is not given this information, you may be depriving yourself of a great deal of extra love and closeness that could come your way. Often, as hard as it may seem, giving somebody the opportunity to help you can be extremely important for them, helping them to feel valuable, and reassess their own values and priorities, too. It may even help an older person feel less depressed or sorry for themselves, putting their own worries into perspective and giving them a meaningful focus in terms of helping to care for you. This new closeness can sometimes be very healing for parent-child relationships that have gone awry in the past. Also, the older generation may have more experience and understanding to deal with illness and the concerns it creates. So, in the main, unless the individual concerned is very frail or the relationship is very conflicted, it is much better to be truthful about what is going on.

Deciding Whom to Tell

Whom do you need or want to tell?

Whom do you not want to tell?

What do you want to tell them about your situation, and how do you want them to be with you?

What ‘ground rules’ do you wish to set regarding confidentiality or the way you want them to interact with you?

Whose help will you enlist to tell others?

Who will tell them, what and when?

It is also good to be as honest as possible with your children. They will know that something is wrong even if you try to hide it from them. Being real with your children is probably the best education, gift and preparation for life you can ever give them. Children often have a better ability than adults to live in the present. This means that they tend to focus more on the way you are day by day rather than continuously looking at possible futures, which is what adults tend to do. However, what makes interactions with children easier is if you have managed to express your emotions and fears with your counsellor or close supporters before telling them. This will leave you in much more receptive state to allow them to express their feelings to you.

Asking for Help

Developing a personal support network

As well as needing immediate help to cope with your reaction to diagnosis, it is likely that you are going to need longer-term help both to support you through your treatment and to support you through your recovery programme. An effective strategy can be to form a support group of friends around you. This involves actively recruiting a group of friends that you can call on if the going gets tough. The need for this will depend on the seriousness of your situation and your own emotional state. But it is a mistake to assume that, because you have a close partner or family, you have a support network.

Those closest to you will be going through their own reactions and, quite often, distress ricochets around families like a ball in a pinball machine. You may feel you are able to offload your feelings, but find, later on in the day or week, that they come bouncing back to you in the form of a marital row or a sick child. It is therefore good to form a group of six to eight friends who are ‘signed up’ members of your personal support group who can pledge to be there for you in times of need. You may wish to have your support group meet once a month at your home to hear about what you are up to and what your needs will be in the forthcoming month. This will help them as well as you.

At first, this might feel like an embarrassing thing to do – to concentrate so much focus and attention on yourself. However, you are giving people an opportunity to express their care and love, and it is likely that they will find this very rewarding. You will also find that being clear and articulating your needs gets easier as time goes by. In so doing, you will be providing a tremendously healthy model for your friends and family to follow in their own lives. It doesn’t all have to be a one-way street either. You may choose to structure the support group so that everyone in it has a chance to express their feelings and ask for the support they need from the group each month. You will probably find this empowering as, although there may be some areas in which you are very vulnerable and needy, there will be others in which you are strong and able to give good-quality support to others.

Veronica’s Story

Before you become concerned about ‘being a burden’, read Veronica’s story below. In the 1980s, she changed her ‘three months to live’ with liver cancer secondary to a melanoma into more than nine years, living to see her children leave school. When she realized that her friends avoided telephoning her in the weeks following her diagnosis, perhaps through embarrassment or a lack of knowing how to help, she sent out this ‘round-robin’ letter:

Dear Friend,

Yes, I have cancer.

Yes, I have been told I have only three months left to live – but actually I AM STILL HERE and I need help!

If you would like to help me, the things I need or would really like are:

1. Flowers every week to cheer me up

2. My organic vegetables picked up each week

3. Money for my holistic therapy

4. Any information any of you can find out about alternative treatment for cancer, anywhere in the world

5. My children taken out while I meditate and visualize

6. A holiday in the Bahamas …

and on to a total of 20 wishes.

All 20 of Veronica’s needs and wishes were met, and she received letters filled with love and gratitude – such as:

Thank God you told us what you needed. We really wanted to help, but we had no idea what to do for the best.

Perhaps there are many people around you in your family, social and work circles who feel just like Veronica’s friends did, and who would be relieved if you would let them know how they could best help you! Let the people who care about you know exactly what help you need. Be specific about your needs, but do not get upset if they say no this time.

Mapping Out Your Personal Support Network

Think now about the family members, friends and colleagues who may be able to help support you now and in the future.

Setting Up Your Personal Support Group

• Ask yourself whether you want (or want supporters) to set up a personal support group.

• If the answer is yes, think about which of your friends you would like to invite to be part of this support group.

• Contact these friends and invite them to join the group.

Suggested guidelines for a personal support group

Below is a set of guidelines on which you could run your support group. Read out or send a copy of these guidelines to all the members of your personal support group.

A Framework for Setting Up a Personal Support Group

A personal support group is being set up by ________________.

I have cancer, and need ongoing emotional support and a ready source of practical help at times of crisis. I will also be very happy to provide support for other group members when I am able to do so, but this may not be possible all the time, and will depend on the demands of this illness and its treatment. I would like to invite you to join the group. Please think about the following suggestions for how the group will be run before saying ‘yes’ to joining. Perhaps you will want to make some suggestions of your own, too? I believe that:

• The group should ideally comprise a minimum of six people besides me, who are not themselves seriously ill at this time. It can include family members, but there should be as many or more non-family members if possible.

• The group members should be able to spare at least two hours every month to come to a group meeting, and have some extra time free each month to provide some care or practical help as needed.

• Ideally, none of this group should be involved with me professionally so that there is no risk of breaking confidentiality or compromising their professionalism.

• At each meeting, it is recommended that each person in the group take 10 minutes – entirely uninterrupted – to tell the others first how they feel, what they are having to deal with and then the support they would ideally like in the following month. The voicing of the support required is not necessarily an active request so much as an opportunity for each person to formulate and voice their needs.

• The time taken by each group member can be lengthened or shortened, depending on the time available and the group members wishes – even three minutes each can be highly effective.