A caregiver's basic guide to breast cancer

It’s October, the global awareness month for Breast Cancer.

You see people wearing pink ribbons, campaigns are run on television, the radio —even ringtones are trying to create some awareness around the disease.

As I heard a radio commercial the other day, I recalled the time we battled breast cancer up-close and wondered how I had missed some important information along the process; that despite having heard all about it, there was so much that I was not aware of or prepared for.

Which led me to a strange realisation that it’s not that I didn’t know these things, but that:

1- You somehow never take it seriously enough.

Like all bad things, we assume it will never happen to us. That’s our first trap. It is important to remember that the statistics in Pakistan are pretty bad —1 in every 9 women is likely to get it—so do not fall for this existential fallacy.

2- You can never know enough about it

Whereas many of us might know how to examine ourselves —though still not practice it— and might get access to a doctor if God forbid, we suspect having it; there are things nobody tells you. Well, nobody told me, not the doctors, not the internet, not the campaigns.

I guess these are things one learns with experience and some research and so I am sharing them here in the hope it might help someone out there.

It will come as a very deep, nerve-wrecking shock.

No matter how prepared you are, no matter how long the disease has run in your family, to have someone say the word “cancer” about your loved one has a way of throwing you off completely.

The complete breakdown you experience in the first few days is normal.

Just remind yourself; the disease is curable (in most cases!), that it’s controllable, that people survive it. That it requires fighting and for that, you need to get back up on your feet.

The treatment is expensive, it’s long, it’s emotionally taxing but don’t get overwhelmed by that. Take the first step, the rest will follow.

The first step should be to find a good doctor

Finding a good doctor is in itself no small feat. Meet as many doctors as you can but I suggest going with someone who is not just competent, but kind—cancer has a way of emotionally breaking down the patient.

You will need a doctor who can be kind and patient. (P.S. small request for doctors, we understand you see hundreds of patients each day and your job require you to build a certain level of apathy, but do be kind— one small gesture of warmth could ease an entire family’s pain).

People will come in with all sorts of advice

Herbal medicine, Chinese medicine, prayers, fruits you can eat, doctors you should see! It can get really overbearing and on days, irritating.

It’s okay, let it be. Hear all of them out (they mean well), but do what you as a family think is best.

I am sure there are hundreds of cures out there and it’s normal that one wants to try anything that might work, but do only as much as you can without getting overwhelmed.

Try your best, but don’t let people sway you in too many different directions because time is of the essence when it comes to cancer. (P.S. if you are going to see a cancer patient, limit your advice. Offer it as advice and not as a divine commandment. Also, be kind).

Some doctors will advise against a mastectomy, based entirely on a social taboo of removing a woman’s breast from the body

No disrespect to them but make that decision for yourself based on what’s best for the patient.

Ask your doctor which one is the safer bet, ask them which one cures the disease better; then factor in the patient’s consent and do what you need to do, to save a life.

Severe mood swings as a side-effect of hormone therapy

In many cases, they will put the patient on hormone therapy before the surgery (there are tests available to see the effectiveness of hormone therapy on the particular kind of cancer a patient has!).

This will lead to severe mood swings for the patient and can be a very trying time for the family.

Don’t take it personally.

Remove your emotions from the equation and don’t let the patient’s emotional instability trigger yours. It’s a tall order; you will need support from your friends and loved ones, and might find solace in exercise and prayer too. Figure out your own balance but it’s important you stay calm.

Chemotherapy is not always the only option

I am not a doctor but I can tell you this from information passed onto me (and based on some research I did), that chemotherapy is not equally effective on all breast cancer patients; again, there are advanced tests available to see what is the percentage effectiveness of chemo on a particular patient.

Also, take into factor the patient’s age and overall health before opting for chemo. Only a doctor, a good doctor, can give you this advice holistically and best.

I am only telling you what I learnt— that in countries with good healthcare, chemo is not prescribed to all cancer patients; but only after considering a variety of factors. Figure out what those factors are and consider them.

The truth about rehabilitation

A surgery, chemotherapy and radiation can leave a patient feeling extremely weak, depressed and sad. Your journey doesn’t end here; rehabilitating them back into normal life is very important, to make all the effort worth it.

Think of a good nutritional plan. If the doctor has prescribed hormonal medicines, be sure to administer them regularly.

Take her (or him) out for a walk. Talk to them. See if you can find them something constructive to do. It can take anything from 3-12 months to get them up and running again.

These 1-2 years can have you feeling very exhausted and depleted. But hold on! Don’t give up.

Keep your chin high. Eat healthy, sleep on time, do something for yourself every day. Keep yourself strong so you can be a good caregiver.

If one of your friends is battling cancer in the family, be there for them, offer to do something small that takes something off their to-do list.

The best thing you can do for them is to give them some time off. So literally offer to run an errand, offer to drop them to the hospital, offer to accompany them to the doctor.

These small gestures can mean a lot to someone going through a very dark time.

For young girls with a history of breast cancer in the family, you can get yourself genetically tested to see what your propensity of developing cancer is. I believe Agha Khan offers that test (the BRCA gene test).

In any case, after the age of 30, see if you can get an ultrasound done every 6 months to be sure (consult a doctor before this).

If you are above 50, get a mammograph, every year. These small precautions are worth the time and effort it will save you later; if diagnosed at the right time, breast cancer can be cured very easily.

But when's all said and done, writing about this journey is much easier than actually experiencing it.

People fighting cancer and their families can change forever, even after the battle is over; but persistence, patience and prayer can be your best friends through it.

Wishing everyone and their families health!

Note: the writer is not a doctor. This is information based on personal experience. Kindly do consult a good doctor before making any sort of treatment plan. These are just some suggestions for you to consider along the way, in the hope to make it easier.