Patients as teachers

Patients As Teachers

prithvi raj jampana
Prithvi Raj Jampana

Being an Oncologist can be a challenging as well a rewarding job at the same time. It is challenging as cancer is a complex and difficult disease to treat. Patients affected with cancer not only have physical symptoms that the doctor needs to address but a lot of social, psychological, emotional, financial and spiritual dynamics at play at the same time. In a diverse country like India, these factors have differing effects on people based on their circumstances, culture, religion, beliefs and geographical location. For an Oncologist or any doctor for that matter, it is important to quickly grasp and understand all these factors when devising a treatment plan and communicating with the patient.

Cancer doctors get to know their patients very well. Most of the patients have difficult treatments for long periods and they with their doctors, together in partnership, go through these phases. News is not always positive and when there is bad news, they would have to deal with it together.

In my journey as an Oncologist, I have met some fascinating people. People with great courage and character, never wanting to give up. People who are calm and composed no matter what the situation is, in control of themselves and their emotions when everyone around them is panicking and becoming restless. People who feel that what they are going through should not happen to others or should be easier for others to deal with. One such person comes to my mind.

James (Jim) Costello was diagnosed with a skin cancer called Basal cell carcinoma on his face. This cancer is normally slow-growing on the skin, usually on the face or scalp that is treated easily with an operation or radiotherapy. Jim got this cancer in his twenties if I remember correctly. He went to the nearby cancer centre and had treatment with radiotherapy. After some time, he had another similar cancer on the face and another. The doctors suspected that this was unusual, and he was given tests and was diagnosed as having a rare syndrome called Gorlin’s syndrome. People who have this syndrome have a high risk of basal cell carcinomas among other things. Also, this syndrome is passed in families and Jim got it from his father. By the time he found out about it, he already had three children, all of whom had got the condition. As if that was not enough, Jim came to know from his doctors that in people with this genetic condition, the risk of cancer increases with having radiotherapy. So, the radiotherapy which he had on his face to control his cancers, was going to give him more cancers in the future. This must have been devastating for Jim after he learnt about his condition in full and the impact of it on him and his family. Most people would have found it difficult to come to terms with what is happening and continue to carry on in the best way possible.

Jim realised that there was little knowledge about his rare condition in the community and the medical profession, leading to him and others with this condition lacking information and being given inappropriate treatments.

So, he along with his wife Margaret, and some others founded the Gorlin syndrome foundation in 1992. Over time, the group increased in size to include hundreds of families in the UK. The group established contacts with patients in the USA, Netherlands and other European countries and played a big part in setting up annual conferences around the world for this condition. The group developed strong links with the medical profession to promote research and to get advice about the best available treatments for their members. Jim also made sure to engage with the media to spread the message about the condition and the documentary “Bitter Inheritance” on the BBC was well received.
I met Jim in the summer of 2002 and was involved with his care for some months. Jim was blind at that time. He had a lot of small cancers on his face that spread into nearby structures leading to surgeons removing one of his eyes. Following that, he had reduced vision of the other eye and could barely see through that. The disease on the face was still growing and causing a lot of damage to nearby areas, so much so that Jim had a bandage covering almost his entire face.

I got to know him well and we used to call each other by our first names. He was a genuinely lovely person to interact with. Though he could not see, he had an excellent sense of hearing. He used to be able to guess my arrival into his room and even before me saying anything, would quietly say “Hi Raj”. More often than not, he used to beat me to asking how I was. I used to joke with him saying that I was supposed to ask that, not him.
Even during his most difficult times because of his disease and the consequences of it, Jim was always, without exception, very calm and pleasant to interact with. He would hardly complain about his symptoms and it needed some probing from our side to get to know his symptoms. He frequently brushed them off. He did not want to tell his problems but always wanted to hear ours.

At around the same time, I was going through a difficult period in my life as my father developed a recurrence of his lymphoma. He was first treated in 1999 and we were hoping that his disease will not come back for some time, however unfortunately he needed more treatment that year. He travelled to the UK and was staying with me while having his chemotherapy. It is always a difficult time when someone in your family is having cancer treatment. At times I felt sorry for myself. But knowing people like Jim helped me manage my situation better. Jim set an example of how to live your life when it is at its worst. Compared to the difficulties he faced my problems were small. I realised that at the time, and it helped me immensely.

Jim passed away peacefully later that year. His Gorlin’s syndrome group continues to provide support to people with the help of his family, the local community and professionals. The way he dealt with his disease and his adversities continues to inspire me and countless others he has met.

Jim’s story tells us how to manage ourselves at times of difficulty. I think there are two broad options. One is to look at the odds that are stacked up against us, shrivel up in fear, blame others for the situation we are in, give up and wait for the end. The other option is to try and overcome the fear that sets in, think calmly and positively, plan out a strategy to deal with the problem, take all necessary support offered by others and do what is needed to make the best of the situation. I know which option I would choose. I hope you do too.

If you would like to share an interesting cancer related story, please send it to us with a name and a photograph and we will be glad to post it on the site.