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Submitted by PatientsEngage on 7 June 2016

Rajalakshmi Siva, caregiver of a person with cancer and co-author of 'When Thoughts Invade the Cancer Conqueror’, recounts her days of a caregiver and how she coped with it right through the ordeal.

What started the journey to hell and back was a pool of blood with a few drops of urine trailing him all the way up the driveway, to the parking lot, into the lift, and into the house and thence to the washroom. It was reminiscent of a silent scream that seemed to reverberate: Hell is empty and all the devils are here just to torture you.

I have never been inside a hospital other than to give birth to my children. The wait outside the ultrasonogram scan room was the first awe-inspiring moment. The first bit of advice to those who are pushed into such a situation is to never let the patient know how you feel. The pit of the stomach might be itching to cut loose, and when the doctor says, come and see me tomorrow, come alone, leave the patient behind at home, you smell something is seriously amiss. But the fear needs to be reined in and kept under wraps before it leaps from you to him. I had to be careful and time my visit to the doctor’s office to coincide with my visit to the grocery – so no suspicions were raised. I almost literally buckled at the knees when advised that there was no way his ailment can be fully managed in this town. Fortunately, I wasn’t totally a greenhorn and had acquired some knowledge prior to this. The doctor said that there was a mass of something near the outlet of the bladder. So everyone needs to be informed, everyone but the patient himself, your husband. 

A lot of secret scheming went behind his back as to how to go about it and preserve the unpleasant surprise for him till the very end of the treatment. The announcement was made, and the plan chalked out. The various options, risks, advantages and alternative treatment options were considered and discussed openly. 

Managing home chores and hospital duties throughout the ten-day hospital stay post the nine-hour surgery proved to be a Herculean task for me. I don’t even recall how we managed it. 

The patient was like a baby who needed tending, as he re-learnt to walk, tottering and stumbling initially. He even had to struggle to be understood when he spoke. Words did not come out, only air did. Even the handling of the now man-made excretory system needed to be learned all over again. And we needed all the patience in the world, a lot of love and the ability to do everything with a benign smile. No other emotion could be displayed at that sensitive juncture.

“I can’t brush my teeth all by myself”, you would think it is the grandchild wailing, no, it is the seventy-year-old, re-learning his activities of daily living.

Dysgeusia is yet another phenomenon that you need to tackle. It means everything tastes the same – like dish water; everything smells the same --like the municipal garbage bin. So what do you feed him? With a kind word here and there, just like it works for a three-year-old, the feeding gets done. Yet when suddenly, he says after a few months, that the potato fry was excellent, the floodgates of hope re-open.

Soon he takes a bath unaided and even wants to get online. The skype account gets activated once more. He even settles down with a new job in hand in the days ahead. We open a boutique and he looks after the financial aspects.  This keeps him well occupied and his mind is away from his ailment.

The most joyous moment: When on Day 3 or Day 4 after the robotic cystoscopy, our urosurgeon shows up and says the histopath searched and searched and couldn't find any trace of a malignancy. Hence, there was nothing for which the medical oncologist or the radiation oncologist could intervene for the time being.

The most confusing moment: This same one. For if the surgeon enters the bladder with camera in hand and scrapes something which says cancer is present, but when the whole bladder is removed and you look inside there is no evidence of cancer. We are still confused, but accept it as a quirk of science or technology. But we still do not believe there was any negligence or deficiency in service on the part of any of the doctors, pathologists or paramedical staff involved. 

The most devastating moment: The one when while waiting for the end of an estimated 5-hour surgery, we are into the seventh hour, a nurse of gigantic proportions (or so she seemed in that state of mind) shouts Nilakanta Siva, Nilakanta Siva, where is Nilakanta Siva. The surgeon himself comes rushing out. I break out in sweat. He calmly says, "Nothing to worry, Maami. (the familiarity because his wife and my son were batch mates), One of his kidneys has ceased to function. We’ll take care of it". At least, that is what I recall him saying. My memory of that moment, I think, can be pardoned for being a bit blurred.

The most humorous moment: When the four-year-old remarked, "No kidney? Great, he will never ever need a restroom again ".

The most disappointing moment: When after almost thirty hours of a nil by mouth period, the dietician's staff comes with tender coconut water and the nurse comes rushing in to stop him. Some potassium levels are elevated, so no bananas and no coconut water. A big gap between the cup and the lip.

The moment of no-confidence in the medical fraternity: When the oncologist calls up the histopathologist, and, in our presence, begins with a torrent of abuses ranging from who gave him or her the medical degree and at what cost and whether he was watching a movie or actually looking at the slide through the microscope while preparing the report. “ I know what I saw, you xxxxx, and your report does not reflect it”, so the conversation went.

The moment of loss of faith in the powers that be: When the surgeon's Registrar comes and says the stent debris could not be removed because they do not have a flexi-URS. And with the rigid one they cannot negotiate the spine. Come again after three months.

The most frustrating: When in spite of my running back and forth a dozen times, the staff at the nursing station seemed unmoved. This was about the vomitting, green stuff, much like in the movie "Exorcist" for the third day running. Green bilious vomit caused by the pain medication . and we  decided to avoid the pain medication to be freed from the vomiting bouts. 

The most disgusting time: When it takes ten working hours for the bill to be prepared from the time the discharge orders are written.

The confidence builders: The scores of FB comments and a few from twitter which kept our hopes alive.

Our moment of greatest solace: The words of wisdom from our stoma care nurse – “When eyes dim with age, spectacles help us see. When one gets hard of hearing, the hearing-aids take control. When teeth refuse to mash, artificial dentures do the job.  When legs are disfigured, Jaipuri prosthetic legs take charge. None of these causes any embarrassments-- so why should the urostomy bags, used when the excretory system malfunctions, make you feel like the odd one out?”. These words, which came at an opportune moment,  gave us a fresh view of life and definitely helped us to move on.

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