Emerging from the pandemic - the oncology patient's perspective

The first coronavirus infections were reported in the Chinese city of Wuhan in 2019. I don't think anyone suspected that the pandemic would spread around the world and its effects would be felt for years to come. The coronavirus officially arrived in Poland on 4 March, when the first case of infection was reported. Restrictions began to be imposed, mass events were cancelled, hotels and restaurants were closed. The pandemic situation was news to everyone. The public complained about the lack of logic in the actions, the inconsistency in the message of strictures and restrictions. Today, we read summaries of the number of cases, recoveries or deaths caused by the pandemic. Some people have been mildly affected by the coronavirus and, unfortunately, others have suffered tragic consequences. This is a very big tragedy for many families. There has been talk of so-called co-morbidities, but the question is, had it not been for the coronavirus, would that person still be alive? Life is the greatest gift and the prospect of losing it hurts the sufferer and their loved ones.

I have the impression, however, that all those who have been affected by the pandemic, by the so-called 'ricochet', and I am referring to oncology patients, among others, are being overlooked when it comes to statistics. The restrictions also extended to the health service, and very often patients' appointments were cancelled or their treatment delayed because of COVID-19 patients. From the accounts of people working in oncology and patients, it seems that it was left in their own hands to ensure the continuity of their treatment. Health services and facilities were not sufficiently prepared for the pandemic, with many places lacking protective masks or other equipment necessary to receive patients. The coronavirus pandemic caused a state of chaos and anxiety in many countries, due to limited knowledge of the disease itself, fear of infection and ignorance about the consequences of COVID-19. Unfortunately, the pandemic highlighted problems that had been observed for years, but only came to the surface as a result of the coronavirus.

Patient appointments were cancelled, patient-doctor communication also left much to be desired. Many hospitals and wards were renamed covid hospitals, wards temporarily closed. It goes without saying how stressful the oncological disease itself is. Unfortunately, the situations described above were additional stressors, as they increased the patient's sense of threat to life and health for the continuity of their treatment and diagnostic processes. A pandemic is an extremely difficult period not only for the chronically ill, but also for many people. The rational way out and escape from the coronavirus was to impose isolation on society and stop the functioning of state institutions and other places. In the initial phase of the pandemic, society approached the issue in a tolerant manner, but the longer the restrictions lasted and the more restrictive they became, the more the state of prolonged confinement and isolation affected some people's feelings of fear, anxiety and apprehension. Remote working restricted us and deprived us of contacts and relationships. The closure of cinemas, restaurants, theatres and gyms restricted people from the leisure activities they enjoyed on a daily basis, outside of work. Living alone and working remotely can feel isolating. As psychotherapists, psychologists we are seeing an increase in the number of people receiving therapeutic help. Chronic anxiety has contributed to mental deterioration, stories of people who have lost a loved one or business and livelihood have also compounded fear and insecurity among the public.

Reducing the negative impact of coronavirus may still be a significant problem for a long time to come, especially if we fail to adequately assess the threat, understand it and approach the issue. For the chronically ill patient, a sufficient reason for stress is their health condition.

Patients adopt different attitudes towards illness and treatment. During the pandemic, an increase in frustration levels could be observed among the healthy and the sick, which influences attitudes towards overcoming difficulties - the illness. Each of us is different, as it depends on our personality, genetic factors, resources, sense of self-competence and self-worth, and social support. Unfortunately, for some there has been a shift from a task-oriented attitude to a passive and therefore evasive attitude. The point is that for those who are not passive and seek solutions, stress will have a mobilising effect. Prolonged exposure to a stress factor has a very bad effect on the body. We are more susceptible to illness and infection, which in the case of the cancer patient is very important, as his immunity is already lowered. While in the initial phase of adrenaline, we feel mobilised, in chronic stress there is an increase in the secretion of cortisol, which causes a decrease in serotonin and dopamine and the neurotransmitters responsible for wellbeing. Facing a cancer diagnosis is a crisis moment, add to that the new reality of a pandemic outbreak. This prolonged situation causes emotional and physical exhaustion, and this affects recovery. Distress, because it is a negative and disorganising stress in our lives has fatal consequences for our functioning. Of course, each of us is an individual and has different resources; social, emotional, cognitive, and depending on these we react to a given situation. However, if there are certain deficits in the area of our resources it will have a significant impact on our functioning. For example, if we lose our jobs during an epidemic and have no means of subsistence or medical treatment, plus our relationships with loved ones are not the best, we may develop a secondary crisis and so recovering from this situation will be even more difficult. The consequence could be the onset of depression, which is why it is very important for the patient to receive therapeutic help sometimes in combination with medication adapted and prescribed by a psychiatrist.

Currently, the COVID-19 pandemic is causing mental health disorders on a global level. The ban on leaving home, combined with other restrictions from an economic point of view, is a serious problem, but sooner or later the economy and industry will recover. As far as mental disorders are concerned, they will not be reduced so quickly. It can take years to work on recovery and return to normal health. It is worth focusing on the resources we have, i.e. a satisfactory quality of life, good relationships with family members. Low levels of support are a big predictor of distress in cancer patients. Good family relationships have a positive impact on patients' mental health. During COVID-19, family members could strengthen their relationships with patients to help them achieve better mental health. It is important to do all this, but with social distance in mind - using online chats, video conferences as possible alternatives.

During the pandemic, many patients, out of fear of being infected and contaminated by the virus, forgave treatment or delayed visiting the doctor. Unfortunately, this is already apparent now, when patients come in and find out that the disease is progressing and that certain steps could have been taken earlier. I also hear that patients somehow feel left behind. Unfortunately, it is true, I think, that during a pandemic, the oncology patient has a very difficult time getting help and diagnosis and has to try much harder to get such help themselves. Added to this is the fear of contracting coronavirus. Of course, it is quite different to consult 'live' than online, but such communication and discussion with specialists and other patients is recommended.

Since the pandemic, there has been quite a strict approach to punctuality and appointment scheduling so that the waiting room is not crowded, so patients should be very vigilant about this. Doctors also need to be very flexible. As far as online appointments are concerned, many doctors have taken a liking to tele-counselling. As for treating the patient, doctors need to assess the risks - whether it would be riskier to treat the patient during the most intense COVID-19 outbreak, or whether deferring treatment or using alternative treatment would be a better and safer option. I strongly encourage people not to be afraid of telephone advice and not to leave treatment to the last minute, as it may be too late. We have a new reality and we need to get used to the fact that this state of affairs will last and stay with us for a long time. When it comes to hygiene, let us demand more discipline from ourselves, let us wear masks where appropriate. If you are recovering from an illness or in the process of doing so, ask relatives to provide products for surface disinfection. It's a good idea if you have loved ones who will make sure that you regularly disinfect items such as doorknobs, bathroom fittings, toilet handles, phones, keyboards, tablets, bedside tables. These are usually where most bacteria are found.

Sometimes I feel that too often people attribute symptoms to coronavirus. Here I would also like to sensitise that due to the overlap between symptoms, e.g. respiratory tract infections, and thoracic cancers, the risk of misdiagnosis is much higher during the COVID-19 pandemic. A patient who has a cough and fever may test negative for COVID-19 and not receive further screening for thoracic cancers. Similarly, a cancer patient who experiences chronic cough and respiratory distress may find it more difficult to identify the symptoms - they will think it is coronavirus and will not undergo appropriate testing. So it's a good idea to keep an eye on your body and your ailments, how long they last, when they started, whether I may have a genetic predisposition to cancer in my family.

A person with cancer, during a pandemic, should adhere to social distancing while maintaining mental health hygiene. Nevertheless, flying by plane to remote places or staying in crowded places is not a good idea. I suggest that it is better to go on holiday by car with people who will be a 'safe' environment. If you don't have to then don't go to the market to buy, there are many companies that will deliver your shopping to your door. Maintain open communication with anyone who may enter your home to determine whether or not they have been potentially exposed to coronavirus.

To help protect people with cancer from COVID-19, it is important to vaccinate immediate family members and their carers. In fact, those around the sufferer must also show considerable discipline so as not to give the patient further cause for concern.

The aftermath of coronavirus is unfortunately already being heard about. Patients are arriving at hospitals too late, and the reasons for these delays, as I mentioned earlier, are due to several factors. He appeals once again that the fear of contracting coronavirus should not outweigh the awareness of the consequences that may result from delaying cancer treatment. Unfortunately, many people have opted out of screening due to fear of COVID-19 contamination. Of course, delays are also due to the fact that there has been limited healthcare activity which has prolonged the diagnostic process for patients with suspected cancer, resulting in diagnosis of the disease at a serious stage. The effects of delays in cancer diagnosis are already being observed, so it is very important to not to underestimate symptoms. If you feel something is wrong - don't give up, go to the doctor and try to get it checked out.

 

One last piece of advice - Only worry about what you can influence, don't worry about the rest. Fears accompany each of us. Especially in a situation that is new to us and we feel lost in it. We create scenarios in our heads and our imagination knows no bounds. We scare ourselves by trying to predict the future. There are areas in our lives that are within our control and those that are not. Let go of what causes you anxiety. Let go of what is eating you up....

Focus on what you can realistically do for yourself.

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8042148/

https://www.nature.com/articles/s41398-020-00950-y

 

Material for the Institute for Patients' Rights and Health Education as part of the Network for Health project was prepared by Adrianna Sobol - psycho-oncologist and lecturer at the Medical University of Warsaw in the Department of Oncology Prevention, employee of the LuxMed Oncology Hospital in Warsaw, member of the Board of the OnkoCafe - Together Better Foundation, psychotherapist and founder of the Ineo Psychological Support Centre.

The 'Network for Health' project is implemented with a grant from the Active Citizens - National Fund programme funded by Iceland, Liechtenstein and Norway under the EEA Funds. 

 

 


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