Journey of a Caregiver of Childhood Cancer: Diagnosis to Recovery
We have seen caregivers going into severe depression, losing weight, and sometimes, even becoming indifferent.
Caregivers play an important role in the treatment of a cancer patient.
They accompany the patient for hospital visits, they are next to doctors in providing care and they are emotionally close to the patient.
In cases of children, the majority of caregivers are parents and sometimes, elder siblings or other close relatives.
The Patients Don't Suffer Alone
The whole focus is always a cancer patient and their needs but caregivers themselves go through a lot of emotional and financial turmoil. It is but natural they silently grieve for the times before cancer entered their lives and disrupted the routines they built up over the years. The diagnosis of cancer is always a shock to a family and close relatives and can be very difficult to cope with.
I remember, a young three-year-old child was diagnosed with stage IV kidney tumor, and when we disclosed it to the family, it was very difficult for them to accept it.
The mother of the child was not able to cope and was not ready to hear about the diagnosis. She was combative and had arguments about the legitimacy of the diagnosis.
She questioned if what we were doing was right for the child.
However, as we proceeded with the treatment of the child, she was able to process it. She turned more receptive, and became a pillar of strength, helping the medical team.
Cancer diagnosis and its treatment do affect the patient caregivers, their siblings, and many other loved ones around them. There are days when the child is eating properly, playing well, speaking, and is comfortable. These become special moments of joy for the caregivers.
The simple things in life once taken for granted became the source of joy and happiness in their lives.
The fear and anxiety of the recurrence is palpable and sometimes make parents paranoid and requires a lot of counselling and reassurance.
Another patient of mine had leukaemia, and the parents were extremely worried about the relapse. At the time of diagnosis, the child had presented with fever, leg pains, and also had severe itching all over the body.
During the course of the treatment, whenever the child had any of these three symptoms, the mother would get extremely worried and sometimes would burst into tears.
It can be very difficult to counsel and console the parents when they are in a mentally fragile state like this. Another child`s caregiver went into depression and required psychological counseling to come out of it.
Caregivers of Adolescent Cancer Patients
We have noticed that adolescents parents and patients have the most difficult time while taking cancer treatment.
Parents' feelings and emotions do get reflected in the children. They are old enough to understand the sadness in the family and consider themselves a burden. Their siblings also get neglected as parents get consumed while taking care of the child with cancer.
Post-Treatment, Every Check-up Leads to Some Anxiety and Fears
Any abnormal finding in the follow-up investigations brings back the stress and traumatic experiences of the past.
In one case, an adolescent child recovered from the thoracic (chest tumor) underwent follow up investigations that showed some abnormal scan in the femur (leg bones).
This created huge stress and fear, and both the mother and child started crying, with the child getting aggressive and refusing any further investigation.
Finally, he underwent a biopsy that came out to be negative for any malignancy. The period till the report came out was highly traumatic for them both.
We have seen parents and caregivers going into severe depression, losing weight, and many a time becoming indifferent. There are many parent support groups, families, NGOs who come forward and provide support and counseling to the families at diagnosis, during, and after treatment.
As the saying goes, ‘it takes a village’ to take care of one child, but sometimes the people in the village also need help during stressful periods.
Caregivers need constant counseling and psychological help to overcome their fears, sense of guilt, and periods of emotional pain and confusion.
This 15th Feb 2021, on International Childhood Cancer Day, the theme is about survivorship and we should aim towards healthy survivors both physically and mentally. Taking care of the mental health of the caregivers goes a long way in reaching our goal of healthy survivors.
(Dr Shweta Bansal is a Consultant Pediatric Oncologist at Masina Hospital.)
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