10
Dec
12

Taruchhaya

No Thumb Nail ImageWe have put together an organisation, which, to start with, assists people who are or have been afflicted with cancer. We have named it the Taruchhaya Foundation, http://www.taruchhaya.in. For the non Hindi speaking world, Taruchhaya means the shade of a tree.

The foundation aims to provide similar relief to cancer patients, which could be through something as little as a friendly chat (which we believe and as research indicates, can be helpful in faster recovery). From personal experience and then talking to patients, I realised how even a few cheerful words could do wonders.

Wishing the very best for all patients and survivors –  let’s spread a smile…

18
Oct
12

An appeal

Would anyone like to help this child who has been fighting with leukemia for 2 years now? Please visit the site put up by his father to gather support – http://www.simplesite.com/johnavon-n-cancer. Many thanks.

06
Oct
12

The joy of giving

Life has its way of teaching certain things. Issues related to cancer patients had been bothering me for a while (well, after I was diagnosed and began treatment for cancer). Prior to this, no more thought was given to this than for victims of any other illness.

And look, what a transformation there has been. I cannot stop thinking about the challenges faced by the cancer victims and how they can be supported to cope with this alteration in their lives.

To name a few, there are the issues of finances, further prevention (to whatever extent possible) of the disease and not to underestimate the importance of emotional support, which compels me to write this particular blog.

Having seen a volunteer in action and also having had the opportunity of volunteering informally as a caregiver for cancer patients for a while (this had to end as the rules of the hospital allow ex-cancer patients to volunteer only after a year from the completion of the therapy), I have realized the necessity of caregiving for cancer patients.

It isn’t short of a miracle what a few positive words and a listening ear can do for a cancer patient. It is sheer joy to see a despondent face turn a little brighter.

Though, for some, it takes more than just a few words to bring some cheer, some are shy to share their burden that is weighing them down. Eventually, I have seen such people lighten up as well.  And what a joy it is – to see a smile on a face that looked worn with concern and despair and to be able to steer the thoughts towards some positivity.

This has also propelled me to make an appeal to people to take time out to volunteer themselves as caregivers/counsellors, even if for a few hours a week, especially, for patients with ominous illnesses like cancer. The patients need them too apart from the doctors.

The joy of giving is its own reward!

Thanks for reading.

(Incidentally, October 2-8 is celebrated as the joy of giving week in India.)

05
Oct
12

Double jeopardy

That some people may think of cancer as contagious, I had suspected all along. But to actually hear it being said was different – it was confirmation. An old lady I met at the hospital undergoing treatment for cancer was not taken care of by her sisters who believed that they would also contract the disease if they took care of her, for instance, by washing her clothes. And these people who believe so are not illiterate either.

This is unfortunate indeed and I believe being double jeopardy for the patient – first, to having being sentenced to the disease itself and then having to face lack of care from the family. Wish there was more awareness.

28
Jul
12

Bone Marrow Aspiration – explained in comic form

Bone Marrow Aspiration

Copyright with Vinayak Joshi (https://www.facebook.com/vinayak.joshi)

10
Jul
12

The remedy within

The disease has such a mystery around it in terms of its causes and various supposed cures as none other I guess.

Apart from the standard causes like smoking, is it, too much food? Too much processed food? Too much sugar? Lack of exercise? Exposure of food to plastics or perfluorooctanoic acid in non stick cookware?

And it seems cure is not supposedly confined to chemotherapy, radiation therapy, or transplants.

The other day, one of my docs told me that one of her patients seems to be on amla (gooseberry) therapy. On the other hand, patients who had wheat grass (believed to have anticarcinogenic properties) during the therapy seem to have a relapse.

Another one I know gave up the chemotherapy midway and switched to homeopathy and seems to be doing fine since few years now.

And prayer – how many of us are willing to take the chance that prayer alone can heal? Apparently, one of our friends, who happens to be a very good allopathic doctor and is very spiritual, had actually applied that to one of the family members. The tumor was gone without any of the standard therapies and has not reappeared since eight years or so.

So, what does one believe and practise to put an effective barricade and if it does invade, shove it out so that it never looks back? Obviously, there are no established answers.

Thankfully, despite the disease, most of us are free to steer our mind towards positivity and determination. For it seems, time and again, it is the positive determined mind that has reigned supreme over the physical effects of the body. The most famous example of that is Lance Armstrong who won the Tour de France, one of the toughest races in the world, seven times, after having been treated for testicular cancer. Ananda Shankar Jayant, reknowned classical Indian dancer and Padma Shri award winner, overcame the debilitating effects of breast cancer treatment and continued to dance.

Many times, the doctors give a few years to live, then the patient lives for many more. What fills that space?

Phoebe Snetsinger, who held a record for bird sightings, was given one year to live after being diagnosed with a terminal melanoma. She went on to pursue birding passionately, travelled widely and  lived another 18 years. And the end when it came wasn’t the result of the cancer- it was a road accident.

So, all those having had experience with this invader (or for that matter, anyone else having/having had debilitating effects) and searching for answers for what works and what doesn’t, could, for one, at least stay positive with whatever treatment they have chosen to follow. Whatever else may or may not be a trustworthy companion, our mind surely can be made to be.

Secondly, I believe, we would need to steer the mind towards a steadfast vision of where we want to go and work towards it to the best of our ability.

Undoubtedly, all this does require persistence. However, it is a challenge from which we, including myself, must not back out.

The examples above are of people who were famous and therefore we have come to know of their determination by what they have achieved. There may be so many unsung heroes who have fought or are fighting their inner battles everyday. This post is dedicated to all those people. I feel there is no conquest of the disease here as some like to say. I guess, if at all, we can just conquer our own mind.

Any thoughts from readers on this subject would be welcome.

04
Jul
12

The unfolding of the saga…

When I first started my treatment, I was clueless about what the next few months would be like. We had never been really close around anyone who was being treated for cancer. So, there were a lot of questions. How long would it actually take? How are the drugs going to be administered? What would it feel like? Will it hurt? What activities will I be able to do or not do? Will there be any other restrictions, for instance, regarding diet? What ‘side effects’ would I actually have? Would I be able to live a normal life during the treatment? What about life after the treatment?

I guess many such questions are at the back of minds of most patients and no doctor prepares the patient for all of these.

What option then is one left with except to let the events unfold as in a stage play, trying to extract bits of information every now and then from any doctors in the extended family and sometimes from the internet if one is brave enough to read. (Initially, I guess I was overwhelmed with the turn of events in my life and didn’t even ask my doctor much nor did I want to read much about my condition. However, that changed after the next couple of months, when I felt I could handle the situation better, with the support of my family behind me.)

So, I thought, I would at least tell my story, to the best of my ability, so that anyone who is about to undergo similar treatment and those caring for them, may be informed of what actually happens. I think one would feel more confident and more in control minus the surprises and anxieties, at least that popped up for me.

However, let me mention again that cancer treatment for each type of cancer, from the combination of drugs to their dosage, to the methods employed (chemotherapy, radiation or surgery or combination or all of these) varies. I feel, though, my story would help give a broad indication.

This is how the events unfolded:

After a tumour showed up in the initial CT scan (with contrast), things began to move quickly. (Here I may mention, I developed an allergy to the contrast a few hours after the scan which caused shivering and intense pain in the legs. So, I guess, one should check about this with the doctor beforehand). The ENT specialist that I had been seeing so far had suggested immediate removal of the mass. Not satisfied with this opinion, we checked for references to another hospital).

I was referred to a team of oncologist/hematologist who advised a nasal endoscopy and a biopsy to determine whether the tumour was malignant.  The procedure was done by a head and neck surgeon under general anesthesia. It took about a couple of hours from the time I entered the operating room till the time I was out. The doctor took out the tissue from the nasopharyngeal region through the nose. (However, I was told earlier, if that  is not possible, for instance, due to infection, an external incision would be made in the mass from the neck (where the swelling was visible)). After the recovery time of a couple of hours, one can go home the same day though it does take a couple of days to get over the effect of the procedure. One feels lack of energy and drowsy, which I understand is due to the effect of the general anesthesia.

The biopsy results took about 5 days and that is also when the staging of the cancer is done (IIE in my case). Subsequently, I underwent a PET scan (with contrast). This time I was given an anti allergen to prevent reaction from the contrast after I informed of the allergy.This scan confirmed the areas where the tumour had spread (neck and cervical region).  Around the same time, one has also to undergo the ECHO and blood tests.

The haematologist (who from then on was the consulting doctor for my treatment) then explained the chemotherapy regimen that was going to follow (6-8 cycles with a gap of 3 weeks between each cycle, following the R-CHOP medication protocol). (It may not always be possible to adhere to the 3 week schedule depending on the health of the patient. Also, one could schedule around one’s convenience, a couple of days before or after the scheduled 3 weeks).

First, however, there was a small procedure for bone marrow aspiration to be undergone. In this, the lower back was anesthetised. The doctor took out some spinal fluid with a special needle to test  whether the cancer had spread to the bone marrow. The procedure itself took about 15 minutes and one has to rest for about 20 minutes thereafter before one can go home.

Chemotherapy may be done in day care, where you are admitted for a few hours or for longer in the hospital, depending upon the circumstances in each case. Even for administration of intravenous drugs, the method varies. For some patients, a canula (a small tube generally inserted in the vein on the back of the hand or the arm) is used, for others, a PICC line (which is a longer tube inserted in the vein for longer periods).  In my case, the drugs were administered through a canula.

The drugs are administered as per the protocol for each patient. In my case, as mentioned in my earlier blog (of June 20), the first drugs were administered overnight and the rest were administered in day care.

An intrathecal (injected into the fluid surrounding the spinal cord) drug (IT MTXT) was administered through a procedure called lumbar puncture towards the end of each chemo session. This drug is prophylactic (preventive), which is given to prevent the cancer from spreading to the cerebrospinal fluid (fluid inside and around the brain and the spinal cord).

(Lumbar puncture, as the name indicates, involves insertion of the needle in the lower part of the spine. This may be done for administration of medicine (as in my case) or for extracting a sample of fluid from the spine for testing. One is supposed to lie down on one’s back without a pillow after this procedure for about an hour.)

Additionally, experiencing nausea post the chemo session, I asked for an anti emetic injection in subsequent sessions to be given towards the end, though that controlled the nausea only to a certain extent.

After all drugs have been administered, the attending doctor provides the discharge summary (including the medication) and one can go home!

If anyone has something to share on their treatment or their loved one’s, I would be very interested.




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Images

Cancer cells in motion

Cancer cells dividing


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