Monday, February 15, 2016

10 Things Every Cancer Patient Should Be Told At Diagnosis.

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This post itself is the draft of one that's getting published in USA Today for Blood Cancer Week. And because it's blood cancer week, I don't go into surgeries too much... that'll be another post!

Being diagnosed with cancer is the single, most devastating thing that can happen to someone. The sudden confrontation with not just your mortality, but the ways of the hospital, the unravelling of lives around you and the angst at the scary prospects in your immediate future is something no one can shake off easily.

But there are many things that can help make it easier. And while I truly believe that you always have a second, more positive, more constructive way of looking at things, it takes time to do that.

So without further ado, here are the 10 most important things I’d tell anyone, including myself, who’d just been diagnosed with a blood cancer.

1)      Ask as much as you can, and ask if it can be written down or summarised.

A lot of information is thrown at you almost at once after diagnosis. And pretty much all of it is useful. Not only do you find out about your cancer, what type it is, and what the likely treatment you’ll get is, but also how you’ll get info on where to go, who specialists for heart, breathing, or, if you’re young, fertility doctors are (all things you have to go through/get tested prior to chemo). Things that aren't easy to remember after hearing horrible news. Studies show that you only retain 15% of that first consultation...

It’s also wise to have a pen and notepad handy, from day one, not just to help remember/note down important information, but also to write down the hundreds of questions that’ll come to your mind. I remember I was in shock, especially at the beginning, but my family had plenty of things they wanted to know, and since then, this habit’s helped ensure those questions I had or those sensations I felt at 2 in the morning were dealt with.

These days, a smartphone will work just fine too! And they double as great entertainment. You’ll find out that often your biggest enemy during treatment is boredom. Just remember to finish that level of Candy Crush AFTER the doctors have left the room!

2)       Build an army

It’s often said that at your darkest hours, you’ll find your truest friends. But why leave it to chance? Many people shut themselves off during their battle, for various reasons. I understand. My family didn’t wanna burden family and friends with what was going on. It's personal. But I, at a 17 year old kid in hospital needed friends, or, at the very least, to keep up with what was going on.

My posting the news on social media was the best thing I could’ve done. You’ll be surprised by how many people will surprise you if you give them the chance. And they did. Not only my friends, who’d message me with a joke, or asking me how I was at the wee hours of the morning, but also family and family friends who came through to support my family.

Not everyone knows how to handle the news, I barely knew how to myself. But those who did reach out, changed my life.

You don’t have to do it as drastically as shouting it out to the world as I did, you can restrict it to those closest to you. But cancer can be a lonely thing. The battle’s much easier when you have others by your side.

An army of mums. Let's just say, I was never hungry during chemo when I wasn't forced to be :P 
Some still bring me food 'til this day!


3)      Don’t be afraid to reach out online either.

I had personally developed this strong attitude, this ability to reason my way through any doubts and fears I was having until I was only focusing on the things I could control; my healthiness and my happiness by the time I was coming up to my first bone marrow transplant. But when I heard about what was coming next, after all that had happened so far, those old fears came back again.

It was only after I met this lady, Colleen, who’d been through 2 transplants herself, and heard her story, that I could move past that. Her warnings and and the tips that came from her experiences just seemed to stick more. Her just being there showed me that there was another side to this all. And when she came around every Thursday to visit me and others on the ward, made the journey that much easier.

But not every hospital has a patient on standby who’d been through what you had. Not every person will click with someone else. And that’s where the internet can come in handy. There are many programs run by great organisations, like the Leukaemia and Lymphoma Society’s Patti Robinson Kaufmann First Connection Program, and Stupid Cancer’s InstaPeer for younger patients, that can  connect you to someone who’s been through what you have. And there are many forums, writers (*cough* me *cough*) and social media platforms (*cough* me *cough*) that can help you find someone, or a group of people, who share your experience. Though no two patients are alike, there’s a good chance that someone, or somewhere out there lies salvation.

4)      Don’t trust everything you see and hear on the internet though.

Though there are many great things about the internet that can make your life that much easier, there are a few things to look out for too.

Though patient groups can be hugely empowering, and can link you to friends that last more than a lifetime, it’s important to remember one thing I mentioned above; that no two patients are the same.
Your doctors are the most qualified, able people to guide you through treatment, if only for the fact that they’re the ones immediately examining you. Although it’s not a bad idea getting a gist of others’ general experiences, and emotional support, taking medical advice, or taking their experiences to be gospel truth of what will happen to you isn’t as good an idea.

There are also many alternative treatments, ranging from juices to herbs, to supplements, to electric-shock therapies run, suspiciously, just over the border on the internet. While claims of their effectiveness and testimonies can make them seem like the real deal, remember, even Paris HIlton has a website. Would you take her fashion advice? Maybe, if it was 5 years ago, but let her be your doctor? I think not.



That’s not to say that those treatments have no merit whatsoever. Who knows, some of them may have some positive effects, others may make you feel well overall, which isn’t a bad thing. But there are some that are outright harmful.

At the very least, clear things with your doctor, and don’t throw aside medicines that have proven effective on thousands, often hundreds of thousands of patients for something that’s not.

Often, there’s no reason you can’t do both. Things like yoga, eating more vegetables and not-too-strenuous exercise regimes just lead to good health overall. In fact, they can help. Exercise, for one, has been proven to greatly reduce the side effects of chemo. That's something EVERYONE in chemo should be encouraged to do.

5)      Don’t let the word chemotherapy scare you.

I won’t kid you, chemos aren’t fun. And many are still brutal. But as years have gone by, many new and more targeted therapies have emerged, causing less side effects while also being more effective.

Many chemos don’t require you going in to a hospital room at all. And the major complications of many chemos can often be mitigated by greatly improved anti-nausea and pain medications and the like. It’s not like the old days anymore... My last chemo, I didn’t notice it other than some mild nausea at the beginning. A targeted chemo I was on, only gave me a slightly elevated blood pressure on my first infusion... I didn't even feel that! And a maintenance one I was on didn’t affect me further than a bit of tiredness towards the end of the month either.

But even if it is bad, which it still often can be, remember - there’s always a reason they’re doing this to you. Everyone focuses on the fear of chemo (a very reasonable fear), but remember, it’s also medication. The very thing that can get you out of the mess, and back to a semblance of real life. That’s what I focused on during the rough patches, and, though it didn’t mitigate the pain, it kept me looking towards the future. And that itself made it bearable.

Another side effect of chemo... but as you can see, you can have fun with it! I used to surprise my nurses each day - one haircut one day, another the next! 
But don't EVER feel self conscious of yourself... I wrote a post on how to get over any self consciousness you may have here

6)      Infection control is VITAL

One of the more threatening side effects of many chemos for blood cancer patients is neutropenia – the loss of the cells responsible for your immunity. Chemotherapies often target fast growing cells and your bone marrow, which houses the rapidly-dividing blood making stem cells of your body, is one of the most affected regions, which is why this happens.

During the weeks you are neutropenic, take every infection control protocol possible. It’s impossible to avoid all infection; most actually come from INSIDE your body. But why add fuel to the fire? These measures are generally simple ones, things like washing your hands with soap, or alcohol sanitizer before all meals, rinsing with mouthwash, and taking those medications/lozenges your doctors prescribe you.

Any sick family or friends, or young children are also people you should avoid. Though visitors often brighten up hospital stays, and allow loved ones some measure of comfort too, remember you can always see them once you’re better! If it's a must, take precautions, maybe consider wearing a mask. 
Avoid large crowds, and maybe consider taking a mask around with you just in case someone sick happens to sit down next to you. It's a handy tool! Even if it does make you look like a duck...

The ‘neutropenic diet’ is also something you may hear about, but don’t worry, it doesn’t take huge willpower and require you to guzzle down horrible tasting green stuff either. If anything, it’s the opposite (at least on the salad front)! Uncooked salad, raw cheeses and things that may have been sitting around for a while are off the menu during those vulnerable times. Foods you have should be fully cooked too. That reduces the chances of any unwanted bugs that your immune system or intestinal bacteria would have normally killed off causing you harm.

Simple things like this can be the difference between an uneventful stay in hospital and a long one. So make sure you do them!

7)      The practicalities

There are many small things that will be the last thing on your mind during the first few days that can make your life easier. Try and sort them out before going in. Much easier than worrying during treatment, believe me.

Things like making sure your insurance knows, or what you’re covered for. I’ve found out, sometimes afterwards, more and more these days, before, that my insurance could actually have paid for some of my stuff! Indeed, one of the drugs that would have set me back thousands of dollars ended up being one hit they could take for me.

Sorting out parking, and familiarizing yourself with routes and protocols for hospitals, emergency rooms, pharmacy dispensaries and the like are also things you’ll need to know. Your social worker is often your best friend in all this. The work they do is incredible, and things like letters to schools/work, support grants from charities, and support networks - they know them off the top of their heads! So, if you haven’t been introduced to one, ask for them!

8)      Boredom… and waiting will suck.

The biggest enemy in hospital is often boredom. My doctors used to say “If you’re bored, that’s good. It means you’re not sick.” But after a 55 day stay in hospital, you get to a point where you wouldn’t mind the latter… Books ended up being my saviour. There’s only so many movies and TV shows you can watch. For others, it may be cards, or crosswords, or chats or Skype or Facetime. Things like that make your stay that much more bearable, and can be a vital distraction in rough patches. So get them sorted too!

Parties in Hospital? And I was bored?? Haha my 18th birthday in there!


And waiting, though it sucks, will become part of your life too. In hospital, a 9am X-ray could mean anything from 3pm to 9am the next day, which can SUCK if you're forced on a liquid diet and chug down that horrible hospital broth...
And the waiting rooms you’ll be forced to sit in after treatment is done is something else you may have to get used to. It's something that has to happen in emergency. If you were in a horrible spot, you'd wanna be seen first too, right? But otherwise... it's just frustrating. But that's where those books, and those games come in handy! So don't forget 'em!

9)      Your nurses are your best friends

Honestly, I felt my nurses were the real doctors in hospital. They’d not only care for me, 24/7, but also hold my hand in painful procedures, take time to sit down and chat to me, and, importantly, my family. They were my best friends and second mothers/fathers in the toughest times of my life, and I can’t thank them enough.

They don’t even need your thanks. It’s what they do. But anything you can do to make their life easier will be hugely appreciated! Being polite and friendly, making sure visitors/family members aren’t in their way and every now and them, asking them how they are every now and then can make their lives better, as well as yours - that can make their lives easier. And what better feeling is there than helping someone who's helped you? 

'Til this day, some of my most cherished friends are my nurses. I can't thank them enough. And they mean the world to me.



My hospital room =P (itss true btw)BIG <3 to the nursing staff. The gals (and 1 guy) have been sooooo good to me and have made me realise that nurses are the true "doctors" in hospitals... they really do all the work, doctors just take the glory haha grin emoticon

They work tooooo hard, a lot of worked 2 shifts in a row for a couple nights in a row (thats 18 hours straight) because people that caring are sooooo hard to find and they're sooo undermanned. If you ever find yourself in a hospital (god forbid) and have to wait a while, please give these angels some consideration... They're really the crust of humanity and deserve more than they're getting. Posted by Nikhil Autar on Friday, 1 July 2011

10)   You can, and WILL still smile.

Those first few days after chemo were the worst of my life. Fear, anger, tears, depression and this one question, “WHY ME???” kept swirling around in my head and heart.

Nothing anyone could say could console me. I still remember crying into my mothers’ arms for a day straight. I still remember being in what could only be described as shock as I walked through my home, and patted my dog for the last time before treatment, 2 days after being told “The good news is, you’re 17 and you have leukaemia, but the bad news is, you’re 17. And you have leukaemia.”

It was only after a moment of sheer and utter desolation that I decided to try something. I took a step back, looked at what had happened to me as if it had all happened to someone else, and thought, what I should do.

When I did that, I realised that though it did suck, in the end, it was me, MY BRAIN, my mind that was causing all my angst. I hated that feeling, I didn’t wanna feel it… so why was I doing that to myself?

What should I do instead?

I realised I was focusing on the things that had happened. Those I couldn’t change.

Why not focus on the things I could instead?

My health. Following doctors’ orders, being as fit as I can, doing anything and everything to increase my odds that tiny amount more... And just being happy, and me, all those times I could.

Yes, it’s impossible to do that all the time. But if you do the same thing I did, every time you feel that way, you’ll see that going forwards and taking the path that leaves YOU happiest and healthiest is the only logical thing to do. And that makes it something anyone can do.

And I hope all this makes your journey that much easier.

I’m sorry you’ve had to go through this. No-one ever should.

But I hope all these things can help make your life that much better.

Feel free to talk to me, or to read all the other things I have here on my cancer journey. It's all to help people like YOU. 

1 comment:

  1. Great thoughts captured here Nikhil.. two things I would like to add Playing and listening to Music and talking to fellow patients and their carers... helps ease your mind too

    ReplyDelete

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