Complete Shutdown

Towards, the end, a hospital close to home, took over dad's case and gave him the basic care he needed to live. He frequently developed low blood pressure and low pulse as a result of his consistent but insufficient liquid diet. He would refuse at times to even drink anything and had to be force fed through the nasogastric tube.

He was finally admitted on 19th April, 2013, with no traceable BP and low pulse. The hospital, doctors in charge and the staff, kept dad alive for 11 days, during which dad ate his first solid food in 3 months. He had his favorite ice cream, vanilla with fresh cut mangoes, dosa and coffee. 

Just as we thought and rejoiced that dad was recovering, dad developed severe fluid accumulation in his lungs, resulting in breathing difficulties and a related cardiac arrest followed. Though revived for a brief period, the end came on 1st May 2013, with him never having spoken a word to his family and passed through to another world. The straight line on his final ECG, will stay with me like nothing can ever stay in my memory. It was final.His fight against cancer ended all at once, with the disease practically eating him all up. 

Love you Dad.

Organ(ised) Breakdown

It was in Feb 2013, that dad started encountering problems in passing motion and gas, despite having the stoma, and as a result of it intense abdominal pain. Initially on pain killing injections and laxatives, it was dismissed as a small hitch. Little did we know it had a deeper darker side to it.

Dad was admitted to the Intensive care unit, with severe intestinal bleeding. He lost 6 units of blood and was transfused with 4 bottles of blood in turn. His blood counts were all haywire. He was finally diagnosed with ileus and intestinal obstruction. Both of which never went away.

The tumour had resurfaced again. And this time was growing as a big mass inside dad's rectum. It pressed down on his bladder, and caused urinary problems. His blood urea and creatinine levels, both of which indicate the kidney functioning, were up. As a result of the bladder not draining well, his blood was full of impurities , thus pushing up the urea/creatinine levels. He was operated on for restoration of his kidneys, and ended up with tubes being pulled out of his back, to drain the ureter, called ureter tubes. When he was unfortunately told that he would not live long, he returned back home, a crushed person. The indication? He stopped walking.

We were told , that the intestinal obstruction/ileus would keep dad in and out of hospital, and the only hope we had was to keep him on liquid diets until the ileus cured by itself. Surgery was risky and ruled out. Dad was put on liquids. He lost weight.

He was given a nasogastric tube, through which the contents of his stomach could be drained, as his intestines had been obstructed. Keeping in line with his wish to not go to a hospital, we kept him on the NG tube, and made sure we provided whatever nutrition we could in liquid form, with a regular check on his blood counts and electrolyte levels.It came to a point where we had to give dad nutrition intravenously to keep his blood counts regular. We put him on TPN (Total Parenteral Nutrition), which is to be run intravenously over a 24 hour period.

Pointers for caregivers/families

1. Talk to your oncologist about what best you could do for your loved one at home, if the patient wishes to not go back to the hospital in the last stages.

2. Make sure you have a well informed nutritionist who can advice you on what can be given in terms of their diet and nutrition.

3. Keep your loved one happy, at peace and most of all, ensure that you are around all the time. It makes a huge difference.

4. Have their vital parameters checked regularly and at the slightest warning signs, make sure corrective measures are taken.

5. Prepare yourself mentally and those around you.

Chemo-rolled

Dad took 6 cycles of chemotherapy, post recurrence of Cancer in his stride and made sure he breezed through it successfully. 

At the end of the 6th session, he suffered. And badly. His hands and feet had turned black, the nurses could not get his veins for the IV line to be started, intense loss of appetite and weakness were some of his problems. He had to be re-admitted to hospital and was nursed back to health in November-2012.

Thereafter he slowly began to revive, and live again. A life free of hospitals and medicines.

Pointers for caregivers/families

1. When your loved one is undergoing treatment for cancer, make sure that the person who is with him/her, is alert at all points in time.

2. Being alert helps to trace out any signs of depression, and even help to ready yourself for any contingency that may arise.

3. Patience is of utmost importance and laughter can be the best medicine truly!

CAN(cer)-ed once more!

The complications post reversal, finally ended, a couple of years later, in March 2012, with dad, having a bloated stomach, intense abdominal pain, because neither was motion nor gas passing through the anus. His stomach resembled a good quality card board box. Puns aside, it was sheer torture., because he did not know what to do to ease it. Upon admission again in the hospital, it was told that his anal passage closed, mainly due to a lesion blocking the pathway. 

This time around again, it was cancer. He successfully,underwent a second abdominal surgery to clean out the anal passage and ended up with a stoma in the 4th quadrant. The fact that he withstood a second major surgery amazed the doctors. His will to live was much stronger than anything else. And that helped dad come up trumps against all the battering his body took.

Once the stoma was back in place, dad slept. He slept like he never slept in the 2 years, he had the normal anal path and its incontinence causing disturbance. He bounced back, slowly but surely to good health.

The flipside being, he was advised another 6 rounds of chemotherapy, as there was a recurrence of Cancer. He underwent that too successfully, though towards the end of the 6th session, he collapsed.

Pointers for families/caregivers

1. While any recurrence of cancer is slotted under the terminal stage, it must be kept in mind, that emotionally it takes a lot out of the family involved alongside the patient.

2. It is best never to disclose to the patient that 'You have very less time to live' or say ' You are going to die' , or ' Do all that you want because you may not be around much longer'. It will kill their resolve to survive more than anything. These lines , began to kill dad more than the most potent dose of poison.

3. While it is difficult to maintain a normal demeanor around your loved one, once you know they are terminally ill, keep calm and be strong. It helps.

4. Keep yourself informed of the drug combination used. If a 2nd set of chemo cycles are prescribed, ENSURE that the same drug used in the 1st set of cycles are not repeated. Why? Because what did not battle the cancer in the 1st cycle will NEVER battle it this time around. So READ and stay informed.

Post Reversal Complications

Dad was the happiest man on earth, when he got the stoma closed and was permitted to use the normal anal passage for motion. Little did we all anticipate the hiccups he had to face. 

For all normal people, the sphincter muscles in the intestines, help in contraction and expansion and pushing the digested food out through the anus. For dad, the muscles never returned to being what they were before, as a result, whenever he would lie down, he would pass motion, most of the times, unknown to himself. As long as he was sitting or walking around, he would be fine.

This resulted in lack of sleep through the night, plenty of embarrassment for himself, though all of us at home were supportive of his condition. He was always assured that with time, it would get better, but it did not. The repeated lack of sleep through the night continued for well past a year post reversal and it took a toll on him. 

Pointers for family/caregivers

1. It is always better to avoid going in for reversal of the colostomy. Some of the side effects of reversal can be paralytic ileus or a bowel obstruction among others.

2. In most cases, assurance has to be obtained that the sphincter muscles post surgery, are restored back to normal, before considering/desiring reversal.

3. Its best to encourage the patient to live with the stoma, which would atleast ensure that unwanted complications as indicated above are avoided.

Much deserved break

After close to a year of doing the rounds at various hospitals in connection with the diagnosis, surgery, chemotherapy and radiation, dad finally was back to his healthy, bouncy self.  He began to work as he did before, do things like he had pre-diagnosis and in simple terms, lived life on his terms.

What he got back to which was unnerving was, his irregular meal timings. AGAIN. The whole world could tell him not to do that, but dad would never listen. For him, a task well done was worth more than a full happy tummy, had he a choice between the two :)

It was during this period that he got me married, was happy to have 'settled down' his daughter and got on with his passion for work.

He was accustomed by now to the colostomy and the bag, but yet, desired to get back to 'normal' again. 

Finally, in March 2010, he got himself operated, closing out the ostomy and letting his anal passage be once more functional, after a PET Scan.

Chemotherapy - 2008-09

In continuation of his post surgical treatment, in addition to 28 sessions of radiation, dad was prescribed 8 sessions of chemotherapy, either to be given Intravenously or taken as tablets.

Dad chose the former. A combination of the drug oxitan, leucovorin injections were run over 8 session (46 hours per session), every three weeks, based on the blood count reports.

Side Effects 

While we were looking for the most obvious side effects of chemotherapy (hair loss), dad won on that count. What we did not anticipate or prepare ourselves for was :

1. Thickening of his veins as the sessions progressed, he was given the IV over 46 hours for each session. Finding a vein to insert the IV needle, became an onerous task, and dad often complained of immense pain in the thickened veins (which turned black progressively).

2. Constipation. 

Pointers for patients :

1. Talk the entire process of Chemotherapy, its possible side effects, beforehand with your oncologist.

2. Don't hesitate to ask your oncologist any questions that may cross your mind and consult him for any changes you feel post chemotherapy.

3. Face the fact that you are human after all. Take rest to recover, its the best thing you can do for yourself. Take it easy. Nothing is as important as your health and its restoration. Keep yourself away from stress, tension and fast paced work. 

4. At the risk of repeating myself, please ensure that you have healthy, low spice food at regular intervals. Increase your liquid intake and nourish yourself with well cooked vegetables and avoid outside food, that can increase your risk of contracting infections.

5. Blood counts undergo a change when chemotherapy is administered. For example, dad's WBC count went as low as 500 (dangerous!) after a particular session of chemotherapy, and he was at high risk of contracting infection/ falling ill. 

6 Accordingly avoid moving out into heavily crowded places and coming into contact with people with colds, fevers, coughs.. the works.

Radiation

As mentioned in my earlier post, Dad was diagnosed with Stage 3 cancer (colorectal) and he had to therefore undergo, chemotherapy and radiation.

Post his surgery in August 2008, we decided to go ahead with the radiation and consulted a radiologist who advised 28 sessions of radiation in all. 

The sessions started off towards the end of September, everyday excluding Sundays and Dad was asked to take a tablet called Captabin (Oral Chemo) alongside his radiation sessions, for 3 weeks with a 1 week break thereafter.

On the outside, we did not see dad going through any side effects of radiation, after the end of the 28 sessions, he suffered from intense abdominal pain. There were also complaints of tenderness in his feet, which we later were told, was neuritis. He faced problems when walking, often losing his balance due to the extreme sensitivity in his feet. He was prescribed Vitamin B injections and folic acid/multi vitamins as well.Though it should have diminished/improved over time, it did not. 

Pointers for patients/families :

1.As indicated in the radiation sessions, the patient needs to avoid consuming spicy/hot food. 

2.Plenty of rest is also required as your body has to battle the intensity of radiation. 

3. When affected by neuritis, please consult your doctor for the appropriate course of treatment.

4. Ensure that the patient has the right kind of footwear, that will protect their feet from injury or exposure to extreme temperatures.

5. Intake of food on time is of utmost importance, when undergoing radiation and consuming oral chemotherapy medication, as these are strong drugs, which may result in ulcers if food intake is not adequate.

DND - Do Not Delay

“You can see a person's whole life in the cancer they get.”  ― Haruki Murakami, Blind Willow, Sleeping Woman

Cancer most often is touted as a silent killer. You never know when/how you contract it and you never know how it advances. Scary thought that.

That said, time is of utmost importance, in the curing of cancer, once detected. Once you know your loved one has been diagnosed with cancer, please make sure you DO NOT DELAY in commencing the treatment or in taking second opinions and then commencing treatment once you are comfortable with the sequence suggested by whichever doctor you choose to go ahead with.

Dad was diagnosed with Cancer towards the end of June and he underwent surgery for it in August, a delay of 1 month. In retrospect, we think , what if we had not allowed him to postpone the surgery , for whatever reason? Would that have been a thin line between cancer being at stage 2 and the existent stage 3 when he actually was operated upon.

Ifs and buts , will not help in altering the past, but keeping the DND rule in mind, may help your loved one to survive :). So hurry up!

Step 1 - Surgery

Once the presence of cancer was confirmed, it was slotted under Stage 3, and the line of treatment was suggested as under :

1. Surgery for removal of the tumour
2. Followed by radiation and chemotherapy as prescribed by the Oncologist.

Dad underwent surgery on 5th August 2008, and 6 inches of his rectum was removed,with the normal anal passage closed for passing motion. He was given a loop colostomy (in lay terms, his intestine was taken out of a hole in his stomach and slit for digested food to pass through and collect in a bag) in the 2nd Quadrant of the digestive system.

What helped in his post surgery recovery and healing was the fact that he never had any other complications like diabetes and blood pressure. Most of all his positive attitude helped him get back on track.

While the colostomy took some getting used to, he gradually moved away from the 'why me' phase to 'I will survive' kind of mindset. From a shameful feeling of having motion splattering all over his feet, when the bag filled up, initially, Dad bravely moved on to the stage where he planned his diet and controlled the emptying of the bag at regular intervals. Once that was mastered, he was a normal person (atleast externally).

Pointers for patients/caregivers&family

1. If the patient does not suffer from diabetes or blood pressure and your oncologist/surgeon does not restrict the diet intake, please make sure that food which is given is cooked thoroughly and contains plenty of fibre and roughage. High protein foods are a big help in recovery.

2. If the patient suffers additionally from cardiac problems/diabetes/blood pressure, please make sure that the diet is in agreement with the other physical ailments as well.

3. Our stomach is divided into 4 parts (quadrants) and for our body to benefit from the essentials present in the food, it has to pass through all the 4 quadrants ,and be evicted from the body as motion. 

4. In colo rectal cancer patients, when a colostomy is given as part of the post-surgical care, we must remember, that as their food does not pass through all the 4 quadrants, in most cases, we'd need to increase the quality of food being given. It means that we would, in addition to well cooked nutritious food, supplement their diet with foods rich in iron, protein and other vital minerals and vitamins.

5. For colostomy bags - Make sure you have a contact person/surgical store that can supply the colostomy bags to you at a decent rate. There are many types of colostomy bags and one can choose the type that suits the patients requirements. Also make sure you have stock of bags, because you would not know when your stock could run out on you. 

6. Keep a medicine kit with the colostomy bag, the adhesive,gel for application on the ostomy area, medicated cotton/gauze for cleaning and splills, an antiseptic solution like dettol or betadine at hand always.

7. Ensure the patient has food at regular intervals, gets plenty of exposure to fresh air and their surroundings are clean and neat. They are prone to infections and it is imperative that cleanliness in all ways is given utmost importance.

8. Talk to the treating doctor in case the patient, post discharge complains of any discomfort, difficulty in passing motion through the colostomy for more than 48 hours, and other related complaints.

9. Patience and a happy surrounding will help patients, move away from depression and self deprecation. Make sure your loved one gets plenty of TLC, it helps.

The diagnosis - June 2008

Dad was a very active person, you could say an antidote to laziness. Never a minute wasted , never a minute spared. He loved his work and vice versa. His passion for it grew right from the time he was in his early teens and continued to 3 months before he passed away, a whopping 4 decades of incessant passion for work!

Symptoms

How did we even there was something wrong? Here are the answers for you.

1. Owing to his active lifestyle, and lack of habits like smoking, drinking and eating non vegetarian food, and given the fact that he loved his walks and yoga everyday, the initial loss of weight, was attributed to moving towards a fit body. 

2. He bled when he passed motion, twice. While he never suffered from piles or related problems ,this one was a shocker.

Initial Run for diagnosis

When dad bled when passing motion, he consulted the family physician first, who directed him to get a colonoscopy done. The colonoscopy revealed a growth about 6 inches above the end of the rectum. 

He thereafter, consulted a gastroenterologist, who extracted a sample from the growth and sent it for biopsy, for confirmation. The biopsy confirmed the presence of cancer, as 2 out of 6 nodes tested positive for colorectal cancer.

Pointers for families/patients

1. Whenever there is something wrong with your body and you either see it physically, or feel it internally, don't ignore it or keep quiet. Get it checked and speak to your family about what you exactly feel. Oh and yes, do not delay. Time is life.

2. While genetics have a huge role to play in the incidence of contracting cancer, in today's world it is equally, if not more important to maintain a healthy lifestyle. With sedentary jobs on the rise, and your laptop/blackberry/ipad/smart phone , seeming more appealing to spend time with as compared to walking/exercising, please take sometime out to physically oil your machine :)

A beginning from the end - Opening Note

Its been close to 3 months since I lost my dad to cancer. The suffering and the pain, he endured,for 5 years ever since he was diagnosed with it, will forever remain like your popular hit movie running in your head, for me. Simply because, seeing is believing. And I have seen it all. Right through to the end.

Yes, its an irreparable loss, and its tough to talk about him in past tense. For me, he will always be a part of my life and I know he will be up there, maybe a star in his own bright space :)

The purpose of this blog, first up, is to convert this loss, into something positive and try to spread awareness about cancer, dad's 5 year journey through it, what we could have prevented, knowledge we should have read up about and been prepared for, so on and so forth.

Its an end to dad's life, but a beginning of hopefully a journey to preventing and helping families of cancer diagnosed people to go through it. 

Its a humble moment for me, as I have been asked to enlist as a member of the ColoRectal Cancer Foundation, also in its nascent stages, founded in Delhi. I will be endeavoring to devote time to spreading awareness through writing, in the initial phases, and once I am able to devote time to it, will continue this cause offline as well.

Hoping this beginning will prove bright and successful.

Archana