The Cancer Etiquette

Since my Cancer diagnosis, I've been looking at the world from the other side of the lens. Before this, I was the friend or family member who was perplexed at how to support my loved ones in times of sickness and grief. We all know and understand what a difficult task it can be.

Should I call or text? Should I address the elephant in the room or circumvent the issue totally so the situation seems lighter? Should I pay a visit at the hospital or wait until the person is back home to meet him or her? Would this be violating someone’s privacy? What are the questions that are okay to ask? So on and so forth.

Now that the shoe is on the other foot, I'm beginning to get glimpses of what might be some of the appropriate things to do.  In the hope that this may help other people in similar situations, I am penning down my thoughts on cancer etiquette.

Before I air my own views on it, I would highly recommend everyone to read this article written by Kate Gross who was diagnosed with Colon Cancer and was told she won’t survive it (sadly she didn’t). Though written by a terminally ill patient and intended for people dealing with such a person, this is a useful primer for anyone who has a friend or family battling with disease. My most useful takeaway was this infographic she used.

_{Kate’s 'spiral’ plate (JOHN LAWRENCE)}

In this spiral, Kate placed different people along different arcs on the curve based on the proximity of the relationship between her and that person. So her partner and children are almost at the centre and farthest away are friends’ friends.

When visiting someone who is battling a disease, one must understand where they lie in the person’s spiral. The thumb rule is you provide support to the people closer than you and seek support from ones that are further away in the spiral. That seems so elegant in its simplicity. This way the patient would never need to console other people in their grief. And each of us can be pillars of support or be comforted depending on who we talk with.

Now for some of my observations on this:

1.   Every disease is different. Some have shorter cycles, others take a long time to be treated. Cancer specially is one of those diseases that can take anywhere between 6 months to many years to be treated (not considering recurrence and any unforeseen complications, etc.) The maximum support and wishes one receives is within the first week of the cancer announcement. With every passing day, less and less people will ask how you are doing. Even lesser would offer help for various tasks. If you really want to support your friend or family member, consistency is the key. How often you want to check on them is your call but writing endearing messages in the first week and disappearing after that just doesn't help or make sense.

2.  Many friends who were silent for many days finally wrote back and told me they didn’t know what to say. I completely understand where they are coming from but saying something is always better than saying nothing. I understand it’s a delicate balance and a daunting task but I guess that is what growing up is all about. You need to figure out a way to reach out. If you can’t think of what to say or write, read about it. And then try reaching out to your friend or family member.

3. Texting/ mailing/ letters are always better than phone calls, especially in the initial few days. Multiple doctor visits, dozens of tests, difficult decisions and above all coming to terms with the judgement itself exhausts the person. Written communication gives more control to in terms of when one is okay to read it and respond.

4. I am often quite divided about how I feel about external support because I want it and still don’t want it to overwhelm me. I am always happy to receive little notes of love and sometimes just a hey! But if and when there is an expectation attached to it, I get overwhelmed. I guess the patient and person have to find a rhythm where both are comfortable, more the former than the latter.

5.   Just because I have cancer doesn't mean I don’t want to hear what is going on in your life. I strive to let as little change in my life as possible. I would love to hear about your recent indulgence or heartbreak or in law trouble or stories of your little one growing up. I would love for you to share everything that we did before all this happened. Like the old times.

6. Lastly, we all are living on planet Google and there is no excuse for you to not read a little bit about the disease. It will give you a sense of what is going on with me and what the next few months look like. It also helps if I can have more specific discussions with you where I will be able to share more about what’s going on. Frankly speaking, it's quite tiresome explaining in minute detail about the nature of the disease in order to discuss, say, options that I'm evaluating at that time.

I have always been socially awkward. I am known to not pick up calls and disappear for months all together. Despite being this way, I would like to believe that I am not a fair weather friend and that when a friend needs support I wouldn't fail them.

If you have a friend or family you care for and she has found herself in a difficult situation, think and reflect what you can do to stand by them. Isn’t this what sharing meaningful relationships is about?

A!

The statistics of Cancer

I picked up Man’s search of meaning again recently. Actually it was gifted to me. In one of the initial chapters Victor Fankl writes about how Jews were reduced to some random numbers in the concentration camps. Who they were before, what were their names didn’t matter anymore. I am beginning to have a similar feeling post my diagnosis.

Doctors, journals, scientific articles are constantly trying to put a number to you. The chances of recurrence if this is positive and that negative, chances of survival under 40, 1 in 400 women aged 30 are likely to get breast cancer etc. etc. The list is endless. Everyone is trying to win the predicting game.

The sane cancer patient in me completely gets the importance of such numbers and how it all has come from researchers tirelessly trying to make sense of this disease all over the world. The not so sane one wants to scream my guts out. It will be two months since this mayhem started and with every passing day the only identity of mine that remains is of a cancer patient.

I am constantly between doctors/hospitals/medical journals which leaves me so exhausted that I have little time to do anything else. I am not permitted to go out alone. At max I can take walks here and there. There is so much paraphernalia attached with Cancer that most of my active time is spent in putting things in place.

I completely understand that it is just a phase, may be just a year. After a year I will be back on my feet like everyone else. Hopefully my life will be back to how it was. There is just one catch to it. Anyone who has read enough on cancer would know that it coming back is a good possibility. My recurrence chances post Chemo+Radiotherapy are 30%.(idiot stats!) There is a chance I will be back doing this dance again. There is also a slight chance that I may not live to do the dance again.

That is the nature of Cancer I guess. I want to coin the term “Family disease” for it. It just doesn't affect the patient but everyone around them. All I want right now is for life to go back to how it was. Where my family can go back to living their life and I have the space to do things that I absolutely love.

I am confident I will make sense of this mayhem and not reduce myself to some silly statistics.

A!

The ever changing tapestry of a Cancer Patient’s life.

So much has happened since I last wrote a post. Cancer makes for an interesting social experiment. Everyone has a story of some miraculous recovery that they have seen and would happily pass on references for the treatment centre or doctor or medicinal plant. The alternative cancer cure evangelism industry is truly alive and kicking.

Naturally, there is no way this wouldn’t have affected me. The biggest culprit in this is my mother. She is now a woman on a mission to cure her only daughter of Cancer. She is constantly reading what can help or talking to people around her if they know of a magical story. Once her arsenal is filled, she is ready to attack me with all kinds of suggestions and daily morning concoctions that look and smell like nothing you can imagine.

I myself am a firm believer in healing oneself naturally and hence am very amenable to such suggestions. I hear them out and have already tried two such things that lead me to a completely different path in my treatment.

The first suggestion that came my way was about a Tibetan medicine practitioner, Dr. Yeshi Dhondhen. He was the Dalai Lama’s physician for 20 years and is 96 years old. He has a clinic in McLeodganj. I would write a detailed post later on how to access him because it is quite tricky. His diagnostic methods are based on analysing pulse and urine.  You can read more about him here (http://yeshidhonden.com/)

The second suggestion was about The Health Awareness Centre (https://www.facebook.com/thacmumbai). It is a group of wellness/nutrition therapists based out of Mumbai. They believe in tackling illness through changes in our diet. I went there to understand how I can eat healthy to counter the effect of chemotherapy and other strong drugs that I was to consume. The nutritionist who met me, in a way, opened the doors for me to understand that there are other options to Cancer treatment. The Centre is a firm believer in reversing cancer through diet and has had many people who had opted for this path and have seen results.

After meeting them, I started reading about the alternatives to chemotherapy, and about studies that compare patients who opted for chemo with those who didn’t. I also read about alternative healing modalities etc.

After much contemplation, I have arrived at the conclusion that I want to trust the natural mechanism of my body to heal. It has to be the toughest choice I’ve ever had to make and it elicited enough hue and cry from all quarters. It just feels right, so I’ve decided to go for it.

I am not however going to be stubborn about it. If I feel it’s not working, I will happily jump the allopathic bandwagon and write odes to modern medicine.

If the readers of my blog know of anyone who has tried the non-chemo way, it would really help me to know about it. There is so much noise on the internet about this. The medical guys calling the alternative therapy guys names and vice versa. There seems to be little documentation that objectively lists down both options with its pros and cons. I’m hoping to do that over the next few months as meticulously as possible.

Till we meet again.

A!

Books that come to you for a purpose

You know there are days when I pause and reflect on the enormity of all that’s happened in a matter of weeks. And especially on those days, I cannot tell you how often I feel thankful for things small and big. People who showed unconditional support, things that fell in place and wisdom that showed up just when I needed it.  Atul Gawande’s “Being Mortal” also is one the books I’m grateful for. It couldn’t have come to me at a better time.

I’d picked this book ten days before the “Final Dance” (which is what I’m calling my cancer). When I look back now, the way it came about seems almost planned. I was travelling back from Bangalore to Mumbai and was already between two books. I went to buy a bottle of water and happened to take a stroll in the nearby book stall. For the last one year, I’d been reading praises about Being Mortal and I always felt I didn’t want to read this book as it would leave me depressed. I decided to pick this book for a friend, who I knew enjoys reading about medical stuff. When I finally sat in the aircraft, I was overcome with this enormous greed to start reading and there was no turning back from there.

Atul Gawande is an American surgeon, writer and public health researcher.  His books beautifully put together his observations on the medical practice and the interface between us and the healthcare system. While I was reading it, I was amazed by the voice that Gawande gave to the often neglected part of the healthcare system, the patient. I started reflecting on my own approach to family and friends who’d been unwell. Little did I realise that the book was actually preparing me for the unwanted intrusion of disease and the paraphernalia that comes with it.

The essence of this book is well described by its tagline “Medicine and what matters in the end”. Gawande discusses several aspects of patient care and his book largely focuses on the care of the elderly and people with terminal illnesses. But the scope of his observations lies far beyond these two groups.

The first thing the book brings about is something we’ve all witnessed or been guilty about: the complete overshadowing of the disease over the person. Once someone falls ill, everyone’s focus shifts to patient care, and what would physically fix the person back to normalcy. This probably works well with diseases that have a short recovery period. Can we apply the same principles of care to the elderly where being sick is a by-product of age or the terminally ill where living without illness is not an option? Do we completely forget the person and her identity with our single-minded objective of treating them?

Since I’ve been diagnosed, I’ve been feeling a number of these things every single day. I don’t remember a single discussion with my oncologist where he asked me about what is important to me, how attached I am to my work and how we can find a way to make all my worlds meet. When I was in the hospital, I was woken up by my nurses at odd hours to change my clothes or the linen.  The loss of control over one’s life makes the whole process wearier than it is. Even from the time, I’ve been back home, I’m constantly negotiating with my family about things I want to do to feel useful and to be active. I understand their concern but it’s a long road and so many things are changing around me that I wish at least some things don’t.

People with serious illnesses can have priorities other than just prolonging their lives. And I think our doctors especially should try to find them out from patients by asking them. We can then make more meaningful medical choices when those factors are also incorporated by our doctors while they talk to us about options of treatment.

The second aspect that resonated very deeply with me is the patient-doctor relationship. Gawande argues that ideally, a doctor must neither be paternalistic (the earlier trend) or just informative (how doctors tend to be now) but somewhere in the middle. They must jointly interpret the patient’s situation with them and arrive at crucial decisions together.

My oncologist, though an excellent doctor, leaves no space for dialogues. He seems to take the approach of giving only relevant information and laying out the options on the table. There is no space for interpretation, no back and forth discussions on what I’d like or what my priorities in life are. These days, I’ve started preparing myself before my appointments with him, otherwise I always feel overwhelmed and unanswered.

Yesterday I had to meet a fertility specialist and discuss my options before chemotherapy begins. I was so put off by her authoritarian approach when we spoke. For her I was just an organism with ovaries, and follicles. I was not a young person battling a difficult disease. Not even someone who’s having to make difficult decisions about weighing risks pertaining to conception in future.

The book poses some very important questions to all stakeholders involved in patient care. I recommend everyone to read it. We all are eventually going to be caregivers to someone significant in our lives. It leaves you with a little more sensitivity and empathy for the person who actually is at the centre of it all. It also has helped me in not loosing sight of the larger picture. However overwhelming and excruciating the process gets, I cannot forget the fact that this illness cannot and does not define me.