In this chapter I’ll discuss the various stages you’ll encounter over the course of the disease. From my experience I know that the better prepared a person is, the easier it is for him to accept what’s coming, to get past all of the difficult obstacles in his path and to start talking to other people about his experiences.
First station – diagnosis
Being diagnosed is a shock and also inspires feelings of fear, confusion, disbelief, desperation and hopelessness… In any event, it’s clear that everyone reacts to their diagnosis in their own way. That said, some patients already have a suspicion that they might have it, so a diagnosis only confirms that. However, that doesn’t mean that their experience is any easier. Other patients, unable to accept the diagnosis, seek a second opinion hoping that another doctor will give them better news. Therefore, this first discussion isn’t easy for the patient or the doctor. From my own experience I can tell you that the patient is often so shocked when hearing the news for the first time that any silver linings or empathetic facts rarely reach the patient. This is why it’s good if a friend or family member is there who can listen to and absorb what the doctor is saying. But even loved ones are only human and their shock and anguish is often as great as that experienced by the patient. In any case, denial and disbelief are completely normal reactions. I’ve even seen cases in my own practice, where a patient gets stuck in this denial phase and even honestly believes, even years later, that they don’t have and never really have had cancer. However, the majority of patients eventually get over this hurdle sooner or later. I usually recommend that my patients keep a journal where they can write down their feelings (“I have cancer”, “what’s going to happen to me now”, “I’m afraid”, “I don’t want to die”, etc.). I’ve noticed that it’s easier for patients to commit their thoughts and fears to paper than to share them with others. The empathy and understanding of loved ones is especially important. One shouldn’t immediately offer consoling thoughts and platitudes – everything will be ok, modern medicine is excellent, they can cure you, etc. The patient is often confused at this time and the silent presence of loved ones and their comforting embraces is usually much more preferable to encouraging words and speeches. The most important thing for patients to know is that their friends and family are there to support them and that they won’t be pushed aside, abandoned or forgotten. In future blogposts I’ll discuss how and to whom patients should explain their situation. I know from experience that medication (anti-depressants, sleep aids, etc.) are only necessary in rare cases. Most patients are able to cope with this shock on their own or with the help of their loved ones. If you’re on your own and don’t have any family or friends, I recommend you talk all the same, even if it’s with a beloved pet (a dog, cat or a hamster) or a house plant, but if you truly have no one to share with, then write in a journal. People are often surprised by these recommendations, but in the end they’re usually thankful.
Second station – treatment has ended
I’ve noticed that the awareness that the therapy has been completed and that life goes on can be an even greater shock than the actual first diagnosis. People become confused and feel as if they were just tossed out of a boat. They were always busy with something – an operation, the post-op period, then chemotherapy with all of the feelings that go with it only to be followed by courses of radiation. And then all of a sudden – that’s it, you can go home and begin a new life. From the doctor’s point of view this is completely logical, but patients often want something more. During the treatment, they feel safe in some way. They’re treating me, killing off the disease and I’ll eventually be healed. What will happen if I’m no longer being treated? Will the cancer return? These are very worrying thoughts. This is why at times like these I’m often asked questions like: “What should I take to strengthen my body? Should I follow a specific diet? What lifestyle changes should I make?” People are ready to buy anything for any price that will prevent a recurrence. It’s often paradoxical that a person is ready to buy expensive supplements, yet isn’t ready to change their eating or exercise habits. I’ve also noticed that patients who feel healthy after treatment often make significant changes to their lifestyles, their eating habits and their attitude toward many things in life. Therefore, the notion that a certain diet helped to battle cancer does have its merits.
Third station – recurrence
This is a shock and also a huge disappointment. I followed the doctor’s instructions, survived a serious operation, radiation and the severe side effects of chemotherapy and now it turns out that it was all in vain. The disease has returned. The time has come to completely discuss and understand what needs to be done in the future. I usually explain the potential scenarios and treatment methods. Chemotherapy isn’t the one and only option, as it is often described. People cling to the belief that the latest innovative drugs that have supposedly created nothing less than a revolution in medicine will help. However, although it may sound harsh, a revolutionary situation has been created, but not a revolution. It’s sad that doctors often fail to take into account evidence-based experience, which would suggest a treatment method for the metastasis stage that would ensure a good quality of life for as long as possible. Instead they choose a course that attempts to destroy every single cancer cell at any cost. The patient’s condition already isn’t what one would call healthy and aggressive treatment can often produce the opposite effect. I usually try to break it gently to the patient adding that “we should hope for the best, but be prepared for the worst.” At this point it’s very important to help the patient find the motivation to live, because they can give in to hopelessness or give up entirely. On the other hand, when they see that the treatment has helped and they begin to feel better, they become more hopeful. Loved ones play an important role at this station – to be close, to support, to cheer up, to inspire the patients to do pleasant things (arranging various items such as photo albums, visiting old friends or favourite places, writing memoirs, etc.). Patients also usually think in an abstract way about what it will be like when they’re no longer around. However, goal-oriented tasks help to keep depression at bay and fill the hours, days and months.
The third station can be a period of varying lengths, which can have different outcomes. I’ve seen cases where a patient repeatedly resumes their battle against cancer for a period of many years. It’s not always possible to foresee this. Once again, I’d like to repeat my suggestion – talk about your fears, desires and feelings. Your friends and relatives are also only human and they’re no doubt very worried and perhaps don’t know what to ask, say or do.
Fourth station – the beginning of the end
Medically speaking this is still referred to as the terminal stage. This is the time when patients from each day to the next begin feeling weaker, more exhausted, more apathetic and less interested in what’s happening around them. This terminal phase can be quite different for patients. This is largely dependent on physical symptoms (pain, shortness of breath, vomiting, diarrhoea or constipation) and whether or not the person is alone or surrounded by caring loved ones.
While there are some patients who accept that death is drawing near, many fight it. They often want the time to finish something, to settle some of their affairs or to say certain things and this should be respected. No matter how unacceptable it may sound, we have to give the patient the permission to leave us. Saying goodbye is important for both patients and their relatives. Loved ones often tell me that after a heartfelt conversation the patient peacefully passed away and that they themselves no longer felt burdened by things left unsaid, unheard or undone.
At this station one has to be ready for a wide range of physical changes that can often shock friends and relatives, but which are a normal part of the process when getting ready for the road ahead. Patients become less active, more apathetic, less talkative and sleepier. Their skin colour or rate of breathing could change, they could experience spontaneous urination or defecation or the loss of mental acuity and may also lose consciousness entirely. It’s often painful for relatives to watch this, but they are natural precursors to dying and don’t necessarily indicate that the patients themselves are embarrassed or bothered by them. I usually advise relatives not to force patients to eat or drink. It’s perhaps better to moisten their lips. Laboured breathing is also usually quite disturbing for loved ones, but patients don’t actually experience this as a burden. The most important thing is to be close, not just physically, but also emotionally and with love. This is that miraculous moment of release. Live through it!
In this phase patients often sleep a lot and you shouldn’t shake them or wake them in any other way. Hearing is the last of the senses to go, which is why loving words are the best you can offer to your loved one. Anxiety, twitching, uncontrolled movements or spasms don’t necessarily mean that the patient is in pain. However, if you suspect that the patient is suffering, then pain relievers should be administered (preferably as an injection or a suppository). And speaking of medications, during this phase, other drugs used for other chronic illnesses (diabetes or hypertension) no longer have any meaning. Pain relievers are the most important drugs, as well as any medications that have a calming effect, if necessary, and perhaps drugs that reduce various secretions.
How patients and their relatives behave is largely dependent on age. The situation is completely different for young and old patients. It’s very important to listen to the patient, to take their wishes into account and, if possible to fulfil them, or at least to promise to respect them. No matter how unacceptable it might sound, humans are mortal.