Being diagnosed with cancer places us on a steepest learning curve we may ever face at a time when we are probably least able to deal with it
This article is courtesey of Patricia Peat RGN Specialist in Cancer Consultancy Cancer Options www.canceroptions.co.uk
We face the prospect of surgery, chemotherapy, radiotherapy, a barrage of diagnostic, intrusive tests, in an alien environment when we feel shocked, frightened, traumatised. The goalposts have been well and truly moved; our existence is under threat, our friends and family deeply affected. During all this, you have to digest large amounts of information, and rationalise the situation to make decisions amongst the most important of your life.
A tall order – Absolutely!
Confused - You will be!
Unsure of yourself, and your ability to voice your opinion – Completely!
Well that proves that you are human and feel much the same way as everybody plunged into this situation. I spent many years working at the sharp end of oncology, working with people at this stage, then through treatment, and later. I spent some years working in palliative care, when the prospect of surviving cancer had become a distant dream, and the reality and inevitability of the situation was unavoidable.
I often feel the contrast between the two, when people looked back on their experiences, treatments and choices taught me more about the importance of empowerment, control, and most importantly quality of information than anything else.
The worst scenario was with people who had not really understood the reality of their particular situation. They had not asked many questions, indeed they may have not wanted to know, but their expectation far exceeded what was achievable by oncology. If treatment was unsuccessful, the feeling of shock and bewilderment that they were in that situation was palpable.
This is one question that everyone diagnosed with cancer asks themselves, and one that has only one answer… "Why not me?" Today, cancer has overtaken heart disease as the number one killer in the Western world, with one in three of us being diagnosed with this condition at some point in our lives (by 2010 it is estimated that this figure will be closer to one in two). Cancer today has become pandemic throughout the world, and the battle to have safe effective cancer treatments is still a long way from success. I strongly believe then that it makes total sense to use many diverse approaches to dealing with it. Cancer is a complicated disease and we are only beginning to learn the complexity of it, it therefore makes perfect sense not to rely on tackling it from a one-dimensional approach.
In order to maximize your chance of survival, and to come through the experience with your immune system and your sense of self-intact you need to be:
Making treatment choices is never easy, nor is it often black and white, but if you feel you have been well informed, and have taken a real and active part in the process, it will help you cope in the long term. One of the most expressed emotions about cancer is the feelings of helplessness, which, if you are not able to be active, can give way to feelings of hopelessness, which is damaging and difficult to deal with. 'Receiving' treatment is a very passive state, the de-personalisation that can occur, where you lose your sense of energy, power and purpose may prove to be a very negative factor. If an element of empowering and enabling takes place, choosing treatments that suit you as a person and having a sense of choice and purpose may be an important factor in how your body manages its battle with the disease.
When you are diagnosed with cancer, you need to construct a specific treatment program tailored to your unique biological and psychological profile. In addition, as we are each unique individuals, this treatment program is also likely to be unique, although our biological and psychological similarities will mean that all treatment programs will have certain foundation factors in common. Factors unique to your particular situation which you need to take into consideration include: the type of cancer diagnosed; how early it is detected; whether it has metastasised or spread; orthodox treatment success rates; alternative treatment success rates; complementary treatment effectiveness; and dietary, lifestyle and psychological changes we are prepared to make. Get the program combination right for you, and you maximise your chance of a complete cure. I appreciate not everybody will want, or be able to deal with their situation in this way, and will just want to put themselves in the hands of the doctors, and be guided by them. That is fine, what is important is that everybody adopts an approach they feel comfortable with, and is going to help them cope, there is no right and wrong way, there is only your way.
Surviving the Oncology Clinic
So, how do you go about being proactive and assertive in your discussions about your treatment? Well let’s address the first issue: oncology clinics are intimidating, most hospital clinics are, so be prepared for that feeling. Often, you have spent the previous days in a growing level of tension and getting yourself psyched up, prepared what you want to say and then a two hour wait turns you brain to a lead weight, and you feel worn out before you get in there. Once in, so many things you want to say and ask, and often there is insufficient time to discuss things properly. Taking in and understanding the context of what is being said to you is extremely difficult, so if you have ever left, feeling you have not got what you need from your long awaited appointment, take heart, it is a common experience.
Now, in order to get the most from your oncology team, you have to look realistically at what they can offer, and what is available.
They will be short of time – unless you are a private patient, realistically, there are far too few oncologists and clinic staff in this country to look after people properly. That is not how the oncology team want it; it is a horribly pressurised situation, where they are expected to switch off from one patient and straight on to the next.
The situation is controlled. Control and pressure to comply is a subconscious and very strong element of how we operate oncology services. Compliance is the quickest, most efficient way to run the service, if everybody wants to discuss new treatments, clinical trials, complementary and alternative approaches, every clinic would run until midnight, not possible. Therefore, your cooperation is much appreciated, and is subtly sought, sometimes attempts at raising new issues are dealt with properly, sometimes the conversations are efficiently managed and you never get past the starting post. Doctors can be masters at blocking communications, particularly when under pressure; you need to learn how to manoeuvre round that.
‘It does what is says on the tin’, if you go to a surgeon, you will be discussing surgery, if you go to an oncologist, you will be discussing chemotherapy, radiotherapy, or some of the new approaches. Each one is expert at those things, and should be able to give you clear information about theirs, and refer you on to the appropriate expert if you need another. Do not expect them to know anything about treatments outside of the orthodox field, that way you will not be disappointed. None of the oncology team will know anything about nutrition and cancer, and will not be in the least bit interested. They may know a little about complementary therapies, and indeed most oncology units now offer them, but anything more alternative, they will have no knowledge at all. Actually I am wrong there, they do know one thing about them, and they are all rubbish! I knew this when I worked in oncology. I didn’t know how I actually knew it, because I never looked at any of the issues or evidence, but, I was very clear on the subject, anything outside of what we offered was useless, we all knew that!
There is more evidence supporting many different approaches than most doctors will ever know about, or indeed be prepared to acknowledge. You have to accept that as the situation in this country stands at the moment, you will have to make your own decisions about what may be the appropriate approach for you, and indeed become your own expert on the subject. There is much more integration of CAM therapies with orthodox in other countries, particularly Europe, where the two sit side by side much more comfortably. Hopefully things will continue to change in this country, until then the best thing to do is work with the situation we have, do your research, and become your own expert on your own cancer.
Do not expect them to be receptive to any attempts to discuss integrating different approaches, or following an alternative path, again, that way you will not be disappointed. You might be thinking at this point that I am generalising like mad, and that you have an open and receptive team, yes I am absolutely; there are some wonderfully open minded professionals out there, but for others the experience is different. It is becoming a much more difficult world for an oncology team to work in, choices are widening, people are much better informed, and the amount of information is staggering. It is little wonder some doctors feel intimidated and put the shutters up. They receive their information through certain channels, and keeping up to date with changes in that is obviously quite enough without them having to take on different concepts such as holism.
Do not assume they are completely aware of all new developments, clinical trials etc. There is too much changing too quickly for them to be aware of what is going off in all the oncology units. There is variation in different parts of the country; surgical approaches probably vary more than medicine, as it is more dependant on individual skill, and availability of equipment in each unit. Do your own research and make sure you are aware of all options and new treatments. If you have private medical insurance, you can sometimes get a wider choice of chemotherapy privately, and you can get newer treatments not yet available on the NHS. If you want a second opinion, to make sure you have been given the best information, pursue it, you are entitled to it, and there should be no problem from your doctor in arranging one. You can either ask them to suggest someone, or take other advice as to who the best people may be. There are certain teams in different hospitals that develop a great expertise with a certain cancer, ensure you have had a specialist opinion.
So, if you want to introduce good nutrition, supplement programmes or metabolic medicine into the scenario, to prevent damage to your immune system, and enhance your chances of recovery, you can probably expect one of the following responses:
“I don’t understand it, but I would like to know more about what you are planning to do, and make sure it is compatible”
“I don’t know what it is, but go ahead if it makes you happy”
“I have never heard of it, but I know it is rubbish”
“It is complete nonsense, and if you insist on pursuing it, I shall refuse to treat you”
If you are surprised reading this, that a doctor would threaten to withhold treatment to make someone comply with orthodox treatment, I am afraid it is a threat I have heard many times. It is a horrible situation for a person to be in, very intimidating, and often very effective. My thoughts on that would be; is this a person you can have one of the most important relationships of your life with? Communication between you and your oncologist has to be built on mutual trust, respect, and good communication in order for it to serve you well. If that is not going to exist, change to an oncologist who will respect your right to look at choices, and consider them.
How Do I Go About Achieving All This?
There are three important steps to getting the best out of this situation:
Put yourself in charge
Preparation: preparation is both physical and mental at every stage with oncology.
Ensure you have thought through all the issues you want to address, have you had enough time to get all the information you need. Most tumours have been present for many years before discovery; there is often some leeway on time for important information gathering. Then think, who is the best person to answer these questions? There is a larger team there than your doctors, the nursing staff are usually extremely knowledgeable and experienced. Prioritise the questions so you spend your precious doctor time on the ones you think only he or she can answer, and then make arrangements to speak to a clinic nurse, or one of the nurse specialists, which most types of cancer have these days. They will have more time to go into details much more thoroughly.
Make your questions definite:
Ask your doctor, what are they realistically expecting the outcome to be from this treatment?
Does tumour shrinkage also mean it will extend my life?
Ask yourself; is that a good enough outcome to justify the cost to me?
What sort of damage will this cause to my body?
What are the short-term side effects?
What are the long-term side effects?
Will I fully recover?
Realistically, how long before I return to something like normal?
Write your questions down, have two copies, keep one for yourself, and give one to the doctor. Tell them they are the questions you want to discuss, tick each one off as you go. Have someone with you jotting down the main points of the answers, or ask if you can tape the conversation.
Mental preparation, the days leading up to the consultation, take active measures to relax. Whether you use meditation, breathing exercises, physical activity (preferably all three) On the day of the appointment, relax and focus yourself, be prepared to wait, so do not use up all you mental energy in the waiting room, take a relaxation tape, or something to read.
It is far more important than most people think to let your team know how much information, and in how much detail you want it. The variation is enormous, for some people, knowing they have cancer is as much as they want to know, other people like to really understand the physiology of the disease. With so much variation in peoples needs, do not expect your doctors to be psychic, consultations involve much subconscious communication as you get to know each other, and they are working out the best approach for you. To have open and clear understanding on what you require, makes life a lot easier, and ensures you get the level of communication you need. This of course will vary, some times you can handle more than others, so never be afraid to tell them what your needs are on any particular day.
Put yourself in charge
One thing to be quite clear on, it is your body, and your cancer. There are treatments, which are offered to you, of your consideration. You may choose a completely orthodox approach, you may decide to integrate nutritional support, you may try some alternative interventions, the choice is yours. It is not an easy position to get to, as we said at the beginning; it is the hardest time to be assertive. This is a learning process, you will develop and grow, you need to take support and help from where you need it when you need it. Some days you will feel strong and assertive, other days you will feel overwhelmed and helpless, that is all perfectly normal, never beat yourself up about how you feel, always pat yourself on the back for your hard work.
If you need to withdraw, withdraw. If you need to scream, shout and rage - scream, shout and rage. If you need to weep, please allow to let yourself go completely, and grieve you loss. There is no need to keep up a brave face. This will not ultimately serve you and it 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 reaction. 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 proper space and time to begin to come to terms with what is happening to you.
I always felt when discussing cancer with people that one of the hardest things to do must be to submit to treatment that you do not fully believe in and you suspect may do more harm than good. The psychological effects alone will be immense. I am not saying that things are so black and white that any decision is reached easily and comfortable, it is a constantly fluid situation. However, if you are not ready to make your decision, say so, it is better to wait a little longer until you are more comfortable than to subject yourself to treatment that you are unhappy with.
You need to surround yourself with positive support from people you trust; I believe most people underestimate the impact of negative people on their survival.
You will meet many of them, the sort of person who thinks a diagnosis of cancer is a death sentence for every single person, and there is pity in their eyes and sympathy in their voice as they practically pat you on the head for being brave. They may be horrified if you have not followed the orthodox suggestions completely, even view you as freaky if you try to discuss complementary elements of your regime. People get very insecure when you do something different – that is their problem.
Their negative experience of cancer is being projected on to you, don’t let it!
Each person is an individual, you are not the person they knew, you are a different person, with a different problem, and you are dealing with it in a different way. Limit your exposure to such people, do not allow every conversation you have to be a re-run of your cancer history, you have to ensure you move on from it, or people will hold you back there. Ensure the majority of your associations are with strong, supportive people who believe in what you are doing, and will support you. Use support groups, seek out people who are like-minded, and stick with them.
There are many integrative and alternative approaches available, far too many to go into here. It is quite possible to devise a programme that is as orthodox, integrative or alternative as you would like. Whilst there are certainly treatments and practitioners that need to be avoided in the complementary world, there are equally a large body of professional practitioners who are doing wonderful work in restoring people to health. Most doctors are now getting used to the fact that people are better informed and want to have a positive role in choosing their cancer treatments and using CAM therapies, quite frankly most of them would. By taking charge, understanding what may have contributed to your cancer and importantly, having a good programme chosen by you to take you on into good health after cancer I firmly believe will make a massive difference to your long term good health.
Surviving Long Term
So, you have got established yourself with your oncology team, had your initial treatments, are following whichever holistic plan, and nutritional regime you have decided upon. So, what happens now?
This period, when everybody thinks your life is returning to normal, can be for many people, one of the most difficult times. The security of having someone monitoring you constantly is less, people around you have relaxed and gone back to their normal routines, the reality that your life has changed forever in a fundamental way begins to sink in.
One of the hardest parts of coping with cancer for many people is the psychological aspects of living with uncertainty. The absolutes about your life have been largely taken away, even with a good prognosis; no one is immune from the niggling thoughts at the back of the mind;
Am I doing all the right things?
Did I get the best treatments?
Am I missing something?
The oncology service now becomes largely reactive; i.e. they will now wait for something to happen before any more action is taken, as that something normally indicates further spread of disease, this creates a limbo situation where every twinge and cough can be interpreted as something ominous. At this point, you really need to be focusing positively on building a healthy future for yourself, and ensure you have the support that will keep you mentally strong. The benefits of being proactive in building up a strong immune system, and investing your time and energy in a healthy future are immeasurable. I know so many people who have far outlived their prognosis, in a healthy and positive manner; it is amazing what people achieve.
Your lifestyle needs to address all the holistic elements of:
Lowering toxicity from our diets and the environment
Low oxygen levels in the body
Lack of optimum levels of nutrients in the modern diet
The high level of sugar, animal protein and long-chain saturated fats in the modern diet
Lack of exercise
Physical and psychological stress
Exposure to harmful radiation
These factors together create an environment inside our bodies that is toxic, sluggish, acid and anaerobic (low-oxygen). In addition, because this unhealthy internal environment is extremely detrimental to our health, the body in its wisdom starts to convert normal cells to cancer cells because the latter can function more efficiently in such a toxic environment. Moritz describes cancer cells as sewer workers, and without these sewer workers we would not survive very long. As Hirneise points out in his interview in Ode magazine, "A tumour is an incredibly ingenious solution on the part of the body… Cancer is not a problem. Cancer is a solution."
So the focus of anybody with cancer should be on becoming healthy and not on the destruction of the symptoms of that ill-health — the cancer (unless the tumour is growing so aggressively that it is posing a direct and imminent threat to life, which usually isn't the case with newly diagnosed individuals).
How do we become healthy? by making the following changes:
Make permanent dietary changes so that it becomes largely vegetarian, fresh, nutritious and organic.
Detoxifying your body both by reducing toxin input and increasing toxin elimination. Undertake a strict food supplement regime to put nutritional components back into the body and in quantities that are therapeutic. Restrict mobile phone use and throw out your microwave oven. Avoid x-rays unless necessary.
Resolve psychological conflicts and let go of old hurt and grudges. Go on regular holidays and actively practice relaxation and meditation to reduce stress levels. Women should stop taking the contraceptive pill or HRT as these can cause cancer. Start making future plans and goals so that you have something to live for. Touch what is divine for you, so that your life becomes part of something bigger.
Back to the Clinic
I am told by a lot of people, that returning for a check up can set them back months and recreate a lot of the anxiety they experienced originally. Having tests, waiting for results, even if you are feeling confident of the outcome, again raises stress and anxiety. Many people find the clinic environment is fairly negative, obviously being surrounded by people at all stages of illness, and sometimes encountering staff who are less positive than you would like them to be, can be very detrimental.
Oncology clinics are difficult places to attend, that will not change; what you can change is how it affects you.
Try and keep your own perspective; you are unique, your body is unique, the way you deal with cancer is unique. Nobody else can have your perspective, so don’t allow anybody else to give you theirs.
Oncology staff see people in very difficult situations day in, day out. It would be impossible for that not to influence viewpoints and attitudes. We do not have a great track record of dealing with cancer in this country, and it is very hard for them to stay positive when orthodox treatments cause so many problems for people. The fact they are generally so cheerful in the situation is a massive credit to them.
Nobody can genuinely predict the outcome of your disease; so do not be influenced by anybody who thinks they can. They are quoting from averages, never consider yourself average. As we know, they have little knowledge of integrating other approaches, so if they do not know, how can they predict.
Negotiate with your team about how often they see you; is their idea of frequency one you are comfortable with? If it feels to often, ask them if they would be happy extending it. Ensure all your tests are necessary, if you are unhappy about scans, or their frequency, discuss other ways of monitoring you.
As time goes on, people often find they are becoming more in touch with their bodies, and develop instinct for what effects it positively and negatively. I have learnt, the people who have done well long term, are those that have learnt what are the elements which heal them, both physically and spiritually. Learn to follow your instincts, spend a little time every day in quiet touch with yourself, and establish what your needs are physically, mentally, spiritually, and try to achieve them. Trust yourself, and have confidence in yourself, you will be by far the most reliable guide you have.
Article Courtesey of Patricia Peat RGN
Specialist in Cancer Consultancy
Tel 0845 009 2041
Fax 0871 425 2041