Blog, Inspiration/Motivation/Help

Dealing with Loss, and Survivor’s Guilt

Last post:                               My Story:                                      Next One:

 

 

This Is Tragic.
Bree and her friend Bridgette were
diagnosed with leukemia, on the same day, at the same hospital. They underwent
painful, grueling treatment together. They spent the hardest
times of their young lives with each-other…
And now that Bridgette’s died, Bree can’t imagine living without her…
It speak volumes on our ability to love… And how love’s power can even outweigh our ingrained instinct to endure.
It’s
tragic…
But this kind of loss happens every day. And not just to cancer patients like her and I.
I felt a loss similar to hers not too long ago. The loss of my first patient.
To be fair, I’m not a doctor, yet. After my experiences as a cancer patient though, my drive to wanna become a doctor – a dream of mine from childhood – only grew stronger. Hugely. But on occasion, I meet people, either through this blog, from a friend, or at hospital, who are going through hard times. Through my experiences, I try and help them by giving them encouragement, someone to talk to, and, in the case of other cancer patients, who, I guess, make up the majority of people I talk to, trying to inform them of what’s to come (all the
while trying to get them to be happy, despite what could be a long, hard battle).
Before my first bone transplant, I found that having the words of someone who’s been through the process more powerful than those of my doctors. They just stuck, there was just more power and credibility to the words that came out of a fellow patients’ mouth. And about midway through last year, I met a patient who was about to undergo a BMT. He’d been going strong for years after his lymphoma was in remission, but it had come back, and this was his last option.
A nurse responsible for coordinating the transplant asked if I could tell him about the procedure. I started talking to him and giving him tips for the procedure. I comforted, consoled and encouraged him when he got scared.I even prayed with his crying family at one point… and continued doing that through the whole transplant procedure, where I could.
I can still remember
his eyes on the eve of his discharge from hospital.
I’d told him of all the things he had to look out for after the transplant – the possible fevers, rashes, diarrhoea and fatigue, amongst other things. I gave him tips on the recovery process, and assured him that he could do it.
I still remember the laughter of him and his family as I left his room.
Despite his shaking, despite his pain, despite the suffering, his eyes were filled with hope for the future.
Hope that he could, and almost would be normal again.
That was
the last time I saw him…
He died a few weeks later.
He wasn’t old – he was in his 20s, only a few years older than me.
He’d only started living.
HE HAD A SMALL CHILD GODDAMNIT! 
When I found out, I was shocked. He was suffering, he wasn’t done with treatments yet. I knew that and he knew that too. But he’d seemed so positive, so sure he’d make it, and the doctors thought so too… but he didn’t.
After that shock, I started asking myself unanswerable questions.
What had he done to deserve
this?
What would happen to his baby?
Why him and not me?
I was feeling the same thing Bree had after Bridgette died… the pain of sheer and utter loss… the pain of losing someone so close to me.
The next few weeks, I couldn’t bring myself to do anything. I didn’t wanna read, write, talk to people. All I did, day in and day out was browse pointlessly through the internet, not even registering what I was doing…
It was only later on that I realised,
that I was told, that I was going through depression.
Frank’s death was a major cause of it, but the frustration of the ongoing treatment and the medications I was on, all contributed to my feeling down… out… and empty.
I could see that something was wrong… I didn’t want it to stay that way. 
But it was JUST SO
HARD to even break the pattern of doing nothing and not caring.
Especially after the world
seemed so meaningless, so unfair, after all this.
After a while… when I could bring myself to do it I sat down and asked myself, what next?
It was then that I remembered my own blog post about depression. I looked over that post again. And I took my own advice. 
I talked
to somebody about it.
That somebody, for me, was Dad.
I told him how I was feeling, and he listened. He didn’t know about Frank’s death, didn’t know about the loss I was going through. But he gave me another perspective of looking at things… and that would mean the world to me.
Me, I was trying my best to help people. And that’s not a bad thing to want to do.
But he made me see that I was overdoing it – I was giving up my own happiness, sleep and even food only months after my second transplant, a critical stage of my health.
I was staying up late, talking people through their problems, writing too much too often and pushing myself harder than I should’ve been.
He assured me that I would help more people in the long run through my being a doctor, if I first helped myself. I agreed. He also convinced me that I’d help others in the short term if I did that too. I couldn’t write or study medicine if I was stuck in hospital for the next few years, right?
And that helped me see that I couldn’t hurt myself anymore over Frank’s death.
A different perspective was all it
took…
But the question still
remained. 

How could I get over the loss?
This time I loved back to how I used my mind to beat my cancer and again
took my own advice.
I asked myself why.
Why was I was feeling that way…
After a while of soul searching, I saw it was exactly what that poor girl was going through. Survivor’s Guilt. 
The feeling of regret after you lose a loved one. It’s the same regret when you fail at something at life. Regret that you hadn’t done enough, hadn’t been there enough. It only adds to the melancholy that is loss. 
But why was I punishing myself that way, instead of asking what Frank would have wanted for me?
In the end… I knew that he would want
me to be happy. To do him proud.
Why
shouldn’t I do that instead?

Why was I blaming myself for
Frank’s death.
I thought I’d given him hope.
And then stolen it from him…
 
That was what was eating me.
On top of the loss of a good
friend.
But after a while of asking myself why again, I realised that I had told him of all the risks, of all the pain that comes during and after a bone marrow transplant. I told him he wasn’t done yet – that the recovery process takes years for some.
All I’d done was give him advice for getting through the procedure and speeding up his rehabilitation. And someone to talk to. Someone to visit him, laugh with him – someone to give his brothers and wife a shoulder to lean on when they needed it.
Yeah, he died young, and yeah the last few weeks were filled with struggle. But there was no way I could have stopped that. He’d been unlucky to even get the disease in the first place, yet alone get one the chemo and a transplant couldn’t fix.
That reminded me of a quote
from M.A.S.H. 
“Rule
number 1 of war [or medicine, or life], young men die. 
Rule
number 2, doctors [, no-one] can’t change rule number 1.”
What I’d done was give him some happy moments in the last days of his life. I’d done all I could do. I had made a difference. 
That guilt I was feeling was only harming me. Something Frank would never have wanted for me. And realising that allowed me to let that pain go…  

But I didn’t want it to end that way.
The loss of this still stuck. The feeling that this was all unfair was still there… But… sad as that was, I couldn’t change that… So… why was I only focusing on that?
The best way I could honour his life, and let him live on, past his time, I realized, was to learn from my experience with him and help others get through what I went through. 
That’s what this post is about.
SO WHAT DID FRANK TEACH ME?
·
He reminded me that no-one can live
forever, that no-one always wins in life.
·
That when we lose someone or
something we care about, we will miss them.
But once we get past our grief and failure, we have a choice on how we deal with it.
·
That his personality. His spirit.  His impact on this world… Still lived on, beyond
past his time, by how he’d changed those around him. By how his amazing family
gathered around to help each-other. By how he could laugh in the face of much
pain…
·
That we can either dwell on the past
and close ourselves off to others and to opportunities… 
Or we can learn from them, from the
mistakes we’ve made on our journey with someone or to something, and use that
to not only get over our loss, but also to improve
ourselves.
That way we can be more successful, influential and HAPPY human beings.
Ones our loved ones would be proud of.
It won’t happen in a day. We may have to do some soul searching to get there. When you lose someone close… it’s impossible to ‘just move on.’
If we can’t see any other way of looking at it, talk to somebody about it. 


I hope my experience with Frank can help you see your way around your losses.

When you lose someone close to you – a friend, a family member, your mother, your father, your son – you will feel loss, and you will feel pain. 

 

Frank was a close friend. He’ll always be a part of me. I can only imagine how hard it would be to lose a brother, partner or child to this disease…
 

But after a while, YOU have the choice on how to remember them. So LEARN from those you’ve lost. Let their time on this Earth, let their qualities, their words, their philosophies, or their tragedy, inspire you to be a better person.



They live through you if they’ve taught you how to live.
They smile on as you smile and make them proud. 
 

Always remember that.


****

 
 
 
So What does that mean for me as a med student?
I’ve learnt that I can’t save everyone… 
I’m only human… people live and die, and no doctor or scientist, can change that.
I’ve learnt that I need to take care of myself before I can help others. I need to make sure I get better first, that I don’t overstress myself (especially now, while I’m still
recovering) and when I become a doctor, that I don’t blame myself for deaths or misfortune I could not prevent.
But does that mean that I, like many doctors, close myself off to others and never get close to patients?
NO.
I’m not a person who can or wants to do that… And I’m not going to turn to alcohol, or other drugs, to get over the sadness my profession entails either. Alcohol abuse is surprisingly high
amongst doctors, despite their better knowledge, for a reason…
What I will do is remember this story, and remember what I’ve learnt from it.
I will still care for others, I
will still connect with my patients, I will ALWAYS try my best to help them in
their times of need.
But when I lose someone, when I miss out on a promotion or fail and exam, when I just feel down and out… I
will talk to someone. 
And I WILL
move on. 
A talk I gave, on this issue and on the horrible stereotype and expectation cancer patients are expected to live by (read about that here:) 

 
If you or a loved one is facing loss or depression of any kind, you will move past it. It won’t
happen straight away, it will take time. But talk to someone about it, and ask yourself what they would want for you – I guarantee it would be for you to keep being you. 
I hope this helps some of you out there who may be struggling. 
Or feel free to talk to me, here or on my blog (nikhilautar.com) or on Facebook – wherever. I will try my hardest to help you.
 
Comment below anonymously if you’d like.
And by the way, Frank
isn’t actually my friend’s name. It’s just a name I made up to protect his, and
his family’s, confidentiality.
Blog, Health Challenges and their Fixes, Medicine and Science

Vaccinations aren’t necessary??

Last post:                                      My Story:                                         Next One:
Anti-vaccination groups have pushed a scare campaign on the public for years now, claiming that vaccines harm, not help kids.
But the truth is, this whole scare campaign really caught fire, after a literally fraudulent, made up paper, was published years ago. This video explains it well. Check it out. 
Anti-vaccination movements have been around for a while, but this whole idea that vaccinations cause autism really started in 1998, after a paper was released looking at only 8 kids who’d ‘developed autism after having the measles vaccination’. But the fact was, that 8/12 of those kids had another disease at the time. Subjects were hired by an anti-vaccination group. Data was completely falsified – in fact NO children were found to even HAVE AUTISM in the study – yet alone 8/12. Since then. multiple studies, ranging from 5,000 to as many as 5 MILLION kids – have shown no association between the MMR (or any other) vaccine and autism. Hell – anti-vaxers even funded a $250,000 study to prove, once and for all, whether this was the case – and lo and behold… THEY FOUND THAT VACCINES DON’T CAUSE AUTISM!
The article was retracted by the journal that published it. 11/12 of the original authors have retracted their statement – something never seen in medical articles before. Only 1, the person who wrote the initial article, a person who makes millions off this campaign, a person who had his medical licence revoked prior to this article being written, still backs his claim.

At the time of publishing this paper, which has been confirmed to be fraudulent, Wakefield himself submitted a business prospectus for a new autism testing kit (of a strain of autism that he actually created) which would earn him $44 million A YEAR! He didn’t claim this conflict of interest, nor others that he had (including being paid £435,000 by lawyers to falsify the study – they were trying to win a lawsuit against vaccine companies and resorted to bribery, risking millions of lives in doing so) and now, he charges tens of thousands (some have claimed hundreds of thousands as he’s seen a resurgence in support, largely thanks to Trump’s anti-vaccine sentiments) in speaking fees. 

 
It’s stupid.
It’s FRAUD
But the idea of not vaccinating still goes strong.
And it’s already killed millions. 
 

Prior to that vaccinations were seen as a godsend. Probably because before that we actually had children dying in large numbers in front of us, unlike the thousands who die every year without having an organisation that makes MILLIONS in donations behind them, due to their kids, or other kids, NOT BEING VACCINATED. Anti-vaccination/Pro-Disease movements have actually been listed in the top 10 threats to humanity by the World Health Organisation. 

The question comes to mind.
Why do people not know this information??
Well it’s either: 
 

1) Anti-vax campaigns and groups, though they may have arisen from actual concern, are now powerful. They keep providing funding to enhance their agenda, making people think those who support them are doing good, when in truth they’re unknowingly being led by people who know this information to KILL thousands of dollars a year. 
Now they, either by accident or, more likely, purposefully, have created a whole conspiracy theory around the idea that the government is trying to cover something up or make people sick on purpose. They invest millions into this and are making millions off it too… while 30,000 adults in America alone –  a developed nation – die of diseases that would never had affected them had they been vaccinated.

OR



2) There is not enough conversation between scientists and ordinary people about why things are necessary and what different studies mean (or the studies don’t get publicised enough) because doctors/scientists don’t communicate well enough with the wider public and the public can’t get access of easy to process information.

Likely, it’s a combination of both.




The question now becomes:
How do we fix it?

Well, to stop the anti-vac campaigns, we need to raise awareness. 
Make videos like this, blog posts like mine that expose these campaigns as the frauds they are go viral to the people who don’t know better and the people who question the necessity.



To do this, we need to EDUCATE PEOPLE on why vaccinations are necessary. What the REAL side effects and chances of those happening are. Research has shown that explaining to them the risks as opposed to trying to hide them, and conversing with people, with effective, respectful communication strategies, as opposed to making memes about them or calling them idiots is more effective.
And we have to communicate this information to the public, with as little jargon as possible, at levels that ANYONE WHO CAN READ CAN UNDERSTAND.
Interestingly, evidence also shows that trying to persuade people is less effective than reminders for people to vaccinate.

Vaccinations are why we, in the developed world, don’t have to worry about diseases like polio, smallpox and measles. 2 of those 3 still plague the developing world, by the way, and kill MILLIONS of people, a lot of them kids, every year. 
To make sure they’re effective, a certain percentage of the entire population needs to be vaccinated. This level, which we call “herd immunity” will ensure that the population can’t spread the disease that’s being vaccinated against easily. The number varies among different diseases depending on how easily it spreads and other factors, but for the flu vaccine in Australia this year, that number was 95%.


And if you’re skeptical about the effectiveness of these programs, a few of these stats should indicate how important they are. 

Reduction in vaccine preventable diseases after 5 years of vaccination in Croatia:
Bernard Keich, “Impact of Vaccination on Vaccine Preventable Disease in Croatia”, Periodicum Biologorum Vol 114, No 2, 141 – 147
 
 





So they are necessary. And you can see from that video and my data above, they DON’T cause autism, like some groups would have you believe. 
They do have side effects in some patients (less than 1%), but most of them are minor, and they save more than they harm. 

Without them, we’d still have millions of people, most of them KIDS dying every year.
Millions of kids die every year in the developing world from diseases that could have been vaccinated against. 
We are privileged to not have our kids torn away from us. 
 
But this may soon be changing… with incidences occuring more and more in developed countries due to the influences of the Anti-Vac movement. 
You and I can stop this trend where it stands.
 
If We Vaccinate Our Kids. 


You can do your part by sharing that video, or this blog post with those less aware than you so that you can save your kids’ lives, as well as THEIR KIDS’ LIVES.


My facebook page:
https://www.facebook.com/musingsofamedstudentpatient

An addition to the original post – A guide to educating those who think vaccinating isn’t safe:
One question to pose to all anti-vaccers next time you debate them – what’s the harm of vaccinating? The only evidence of it having some conceivable harm was the fraudulent Wakefield studies shown above. No heavy metals are added to vaccines any more by law, indeed, they never exceeded the amount you get in a serve of tuna. Risks of things like Gullian Baree Syndrome are 3/1,000,000. For the Flu vaccine, these rates are 1/1,000,000. The Flu itself has a 17/1,000,000 risk of causing GBS!. Risks of febrile seizure are present, at 30/100,000 children vaccinated, but they cause no long term harm. Indeed, reducing incidence of severe diseases like measels, or the flu, which cause febrile seizures at much higher rates than vaccines ever could, actually leads to LESS overall febrile seizures from occurring than vaccinating. 
 
Common Arguments They Make. Why they’re wrong:
 
They often argue “It’s good to have some diseases early in life!” – well vaccines work on that same principle.
Except instead of giving you one that can leave you sterile, brain damaged or dead, it gives you a weaker/dead version of the disease so that your immune system is prepped for later encounters with disease. This video outlines the immune processes that occur in vaccination and the dangers of not vaccinating really effectively!

 
“They don’t work in all people! Why should I get mine?”
That’s true – they don’t always cause the intended effect, and vaccinated people can still get sick. However, if enough people in a population are vaccinated (and evenly so – as in, there aren’t pockets where people have very low vaccination rates where diseases can spread) the disease can’t spread in the first place, so everyone’s gotta do it for it to be effective. Many people (pregnant ladies and immunocompromised people for eg) can’t get them – so you’re protecting not only yourself and your kids, but also them. That’s the concept of herd immunity!

“But what about the toxins and insets on vaccinations which outline worst case scenarios and the vaccination court? Doesn’t that PROVE vaccines do cause harm?”

In preparing vaccinations to ensure they’re safe, some chemicals are added to some vaccines. The most common ones espoused by anti-vaxers are things like formaldehyde and mercury. However, you get 10-60x more formaldehyde when eating an apple as compared to the traces of formaldehyde left in vaccines after their preparation. Similarly, the use of thimerosal has also been criticized, but most modern vaccines no longer have ANY mercury or mercury derivatives (indeed, many of these mercury derivatives are passe through via stool as well) – and you get a higher dose of mercury in an 85g serve of tinned tuna than you do from any vaccine too.

“But can’t vaccination make me sick?”

Most vaccines out in the market are inactivated ones. The flu vaccine is the most famous, common example. Viruses are killed and there is literally no way that they can cause you to catch the disease. Live vaccines are out there too. But they utilise a severely weakened version of the pathogen they’re immunising for, or even, in some cases, use similar viruses or pathogens which are nowhere near as dangerous as the actual vaccine, but confer good rates of protection nontheless.

I understand. You’re concerned. But hopefully I shown you why vaccinating is so crucial. Do let me know if you are still concerned – you can reach me at info [a.t.] nikhilautar.com
Blog, Inspiration/Motivation/Help, Medicine and Science

5 Reasons Why You Can’t Afford NOT To Give Blood, and Join the Bone Marrow Donor Registry.

And Join the Bone Marrow Donor Registry

Through my journey to recovery, I’ve said thanks countless times; to my doctors, my nurses, my parents and my bone marrow donors. But the other day, I realised that I must have had at least a hundred bags of blood pushed into my veins at some point in my treatment. That’s on top of the two very vital bone marrow transplants I had.

 
It’s staggering the lengths our health system will go to in order to save a life.
 
I guess only after getting sick and really needing those bags of blood did I understand the importance of blood donation. After volunteering at the blood bank, I realised how much goes into just maintaining proper stocks.
 
Most blood products have to be collected on a regular basis, as they can’t be frozen. In fact, all of them can’t, except for plasma. And, as you’ll learn by the end of this… some common treatments require literally THOUSANDS of plasma donations per patient. 
 
I’d been brought up with the idea, the common misconception, that giving blood is a painful, time consuming process. But in truth – it was anything but.
 
I watched people walk in out within twenty minutes, smiling the whole time. Only 6 of which was actually spent giving blood. But despite all the great work that thousands of Australians, and those in other countries of course, do every day in donating blood – there is still a critical shortage. In fact Australia, as a country, still has to import blood to keep up with demand. 


Only 1/30 people donate. These guys often donate regularly and are the reason we don’t have to import huge amounts of blood. People don’t give because they’re afraid of the procedure, because they don’t think it’s needed, or because they don’t care.     
 
But what if it I told you that the only pain involved was the initial needle prick… pain no more than a blood test? That it only took 6 minutes. That there is indeed shortages in giving blood, and in the bone marrow donor registry, particularly in the minorities, and during winter when regular donors get sick. And what if I told you that there are pretty awesome benefits of giving blood too – you get paid, you reducing your risk of major diseases like cancer and heart attacks and you even lose quite a bit of weight losing weight. So you’re not only saving 3 lives every time you donate… you’re helping yourself too.


Well – all of these are true. And I hope these ideas will make you see that you can’t afford NOT to give blood.

1) It’s needed – and demand for it is always increasing.
2) It’s an easy, almost painless procedure.
3) It’s a free health check-up every 3 months and there are HUGE health benefits to boot!
4) There are financial benefits and free stuff that you could
be missing out on!

5) It’s a great way to lose weight and you get a guilt free meal each time you do it!Here’s a video I made outlining the benefits of giving blood – and why you can’t afford NOT to do it!

 [email-subscribers namefield=”YES” desc=”” group=”Public”]
 
1) The necessity is
ever present and ever increasing.
 
Everyone’s heard this stat. 1/3 people will need blood in their life, yet only 1/30 donate regularly. Yet – what people don’t understand is that, as a first world, developed country, we will never have a shortage of blood as we are rich enough to buy blood in times of shortages. Their health systems suffer and people literally die when they don’t get access to the blood they need and to boot… that money doesn’t come from nowhere. We pay for it. Through our taxes. 
 
Blood donations have to be constant. As I said before, you can’t freeze whole blood or platelets. And during cold and flue season in particular, regular donors are often sick and can’t donate – so it’s always needed and not something you can or should put off.
The increase in the amount of bone marrow transplant procedures done, as doctors realise it is a viable method for treating a variety of autoimmune conditions, such as diabetes, scleroderma and even AIDS, as well as blood cancers like mine, means that demand for bone marrow donors is higher than ever before. But the registry still remains sparse, meaning many
people will not get a second chance at life, one that I did. Despite the scary name, over 95% of people who get called up to donate marrow (a 1/400 chance of that even happening) never actually have their marrow invaded. And joining the registry, only a small blood test, or a swab of the cheek. I’ll explain how it works more in the next section.
http://www.ncbi.nlm.nih.gov/pubmed/19140820
 
Some cultures in particular lag behind others in regards of joining the registry, and giving blood. People of Indian, Asian, Black or Middle-Eastern descent in particular have much lower rates of participation on this front. This pie chart above, based on the American Bone Marrow Donor Registry, demonstrates this shortage for Asian and African-Americans in particular. 


A lot of this is due to cultural beliefs that blood is related to male virility, but a much larger part of this is due to laziness or being afraid of the actual procedure. Well, hopefully, the next point will change your mind about that.
 
2) It’s easier than
you think and involves little risk to the giver.
 
Many people relate the process of giving blood to intense pain and a lot of sacrifice on behalf of the donor. While it is a very noble thing to do, it is not something that people should be afraid of. 
 
Did you know, whole blood donations are done in 6 – 10
minutes?
Did you know that the only pain involved is the initial jab
from the needle, not from the blood leaving the arm?
And did you know that a vast majority (over 95%!) have absolutely no side effects from giving blood?
 
I won’t kid you, the needle is larger than most. But the fact that you’re required to drink a litre of water before donating, and the fact that you’ve got the best phlebotomists (the fancy word for blood takers) working on you means your chances of having severe pain from a blood donation are very small. In fact, in his greater than 20 years experience in donating blood, my father has only had one “two-arm-specials,” where they had to jab him twice. IN OVER 200 DONATIONS! I’ve had a MUCH higher rate of blood takers missing veins in my 3 years of treatment, that’s for sure… That statistic is a true testament to the skill these guys have.
 
 
Here’s a picture to put it in perspective. The one they use in blood samples is the blue or purple one standing up. The one they use in taking blood donations is the light blue or black one lying down. Yeah, it’s a little bigger, but when you know that the pain only lasts an instant, not throughout the whole donation, it doesn’t make much of a difference.

Relaxing during a blood donation. Over 200 (300 now since I wrote this) done by this man alone. 
Joining the bone marrow donor registry doesn’t involve extra
pain. In fact – NEVER does someone actually take a
sample of your bone marrow!

To join the registry in Australia, you have to donate blood and be under the age of 45, so that if a match is found, you don’t get the unfortunate situation of a person refusing to donate their stem cells due to fear of the procedure. 
Even then, joining the registry only involves the taking of an extra 20mL of blood, which they use to figure out your “tissue type,” which is used to match the recipient to a donor.

When you consider you’re giving 475mL of blood at the time anyways, that isn’t too much. To join up – next time you donate blood – ask to join the blood donor registry, and someone will hand you a form to do just that.
 
In America though – it’s even simpler. It only involves buying a $5 kit and sending in a sample of your DNA taken from a cheek swab to join.
 
Once you’re on the list – you’re on there forever. 
And
there’s only a 1/400 chance of being a match for someone in your lifetime.
 
Even the procedure of donating marrow is nowhere near as painful as it sounds. In 95% of cases, it’s actually STEM CELLS that you donate. The process takes 3 hours and basically involves taking blood from one arm, siphoning off the stem cells they need, and pumping it back into your other arm. Even if they need to take it from your marrow, you’re under general
anaesthetic, so it’s nowhere near as painful as it sound (in fact, that 5% of people who do give via that means, often do so because they’d prefer to not feel anything and take a while to recover than have to take the other option).

 

 
For more info on how to join the registry, click here:
 
http://www.abmdr.org.au/pdf/dynamic_pages/3/92447657_N1177%20ABMDR%20DL%208pp%20October%202012%20LR.pdf
http://www.abmdr.org.au/dynamic_menus.php?id=1&menuid=2&mainid=1
http://www.leukaemia.org.au/how-to-help/blood-and-bone-marrow-donation/register-as-a-bone-marrow-donor
America/International:
http://www.giftoflife.org
http://www.bmdw.org/index.php?id=become_donor
http://www.bmdw.org/index.php?id=addresses_members&no_cache=1
3) It’s a free health
check-up for you. And it reduces your risk of heart disease, cancer and diabetes.
 
Every time you give blood, they need to assess whether your blood is healthy. So giving blood every 3 months is essentially a free, quick health check-up, at least for your blood counts (though I wouldn’t recommend not getting physicals/check-ups done on this basis). It’s a great way to catch diseases early.
 
Indeed, in my case, I would’ve known I had myelodysplasia syndrome (MDS) a long time before it developed into its deadly form, acute myeloid leukemia (AML). And MDS is much easier to treat than AML, which I found out the hard way.
 
I’m not saying that you’re at risk of getting such diseases if you don’t give blood, but you will definitely pick up on any abnormalities you may have earlier, making any conditions you may develop much more easily treatable if you do.


But early detection isn’t the only benefit. Giving blood regularly has been shown to reduce the risk of heart attacks in men, as well as the ability to slow insulin resistance which leads to diabetes.  A study of nearly 3000 men in Finland showed those who did give blood regularly had an 88% lower risk of heart attack than those who didn’t! That’s HUGE! Donating blood has been known to reduce the buildup of toxic elements in your blood, including iron, making it not only a free detox, but a good way to reduce your risk of cancer!

4) You’re missing out
on a lot of benefits – including money.
 
While talking to a few donators at the marrow centre, I realised that a lot of them were there not only to give others a second chance at life, but also to help themselves fiscally.
 
A lot of the donors were actually school kids. I wondered why. Apparently, they came as often as they could over the year in order to miss a few periods of class. While having our high school students skipping class isn’t an ideal situation, it’s probably the best, most productive way you can procrastinate academically… I know I would’ve been on that bus every 3 months if I’d known that during school…
It’s not just school kids who benefit. A good chunk of people donating were actually being paid to do so by their employers. There are many schemes and benefits out there where you can donate blood and actually be paid for the time it’s taken out of your day by your employer. And I’m sure sitting in a chair for 10 minutes is
much more preferable to slugging it out at work! Depending on where you live, there may be tax benefits eligible for donating. And indeed, in some countries,
they even pay you for donating blood!
 
Here’s a link to a video of how you can do this in America:

The ethics and implications of a system which compensates everyone for donating is interesting. But if you can cash in AND save lives, there’s nothing wrong with doing both!



5) You miss a chance
at losing weight and have a chance at eating great food without guilt.
 
When you donate blood, your body needs to replace what was lost. In fact, it takes at least 650 calories to replace a pint donation ofblood. That’s the equivalent of going on a 5mile run! Feel a split second of pain in your arm and sit on a chair for under 10 minutes or run 4-5 miles, you decide.
I know which one I’d choose…

 

 
Not only that – but after giving blood, you’re given a chance to go crazy over a veritable buffet. At the centre where I volunteer (Liverpool) there are sausage rolls, pies, soups, milkshakes, coffees, toast and more – and it’s served by chirpy, good looking volunteers (well, at least when I’m on duty).
When I’m feeling too lazy to cook one day, or stressed during my exams or indeed, if I was homeless, this would be where I’d be going to get a free meal. Indeed, the fact that you know your body will have to work to make up for what you’ve lost will mean you can have a guilt free meal. Be warned though – too much donating can result in a figure like this:

Dad going to TOWN on some freebies. Remember – this is only the COLD food they provide. Add to this sausage rolls, pies and milkshakes, and that’s what’s on offer every time you donate! Some centers have other meals on offer too, including lasagna, pies, and even give out additional meal vouchers for restaurants.

 
 
So – now that you’re convinced that you’ve got to go out and give blood – remember these things:
 
Before giving blood, make sure you have a meal and drink a litre of water within 3 hours of donating. It’s a requirement and you don’t wanna be turned back on the day!
Try and include high iron foods and things like orange juice (which increases iron absorption) to ensure your iron and haemoglobin levels are sufficient. A tip from the nurses there – spinach and orange juice in the meal before you donate increases iron levels into the healthy range for those who find themselves turned back for being too low. Make sure you haven’t
travelled to areas with infectious diseases in the past 3 months and make sure that you can prove any recent tattoos you’ve had were done in sterile situations.
 
After you’re done giving blood – make sure you drink a glass of water before eating or drinking anything hot, just in case, as it reduces the already small chance of vaso-vagal syncope.
 
To find and make an appointment to give blood at your local blood donation centre, click here:
https://www.donateblood.com.au/ready-to-donate/make-appointment?sourceId=SEM12&utm_source=google&utm_medium=cpc&utm_campaign=redcrossSEM&gclid=CNmopreE9boCFUMzpAodMikAzA
http://www.donateblood.com.au/ready-to-donate/donor-centre
http://www.fiods.org/main/IFBDO
  [email-subscribers namefield=”YES” desc=”” group=”Public”]
How can you help if you can’t donate blood?
 
Unfortunately, a small chunk of women, and some men, can’t donate blood as their iron levels are not high enough. And there are other reasons why people can’t donate too.
 
But if you can’t give blood and join the bone marrow donor registry, you can still spread the word and encourage others to do so! Whether you mention it next time you catch up with friends or just post it on your Facebook wall – these things all count and if it helps 1 extra person get into donating blood, well, you’ve already saved 3 lives!
 
If you are donating – make sure you “check in” on social media each time you give blood. Letting people know what you’re doing is not boasting (even though it’s definitely something you should be proud of) when it gets others to donate too!

You can also volunteer at the Red Cross like I do, either by helping out and giving snacks to the donors, or by driving a car or van that picks up donors. It looks great on your CV and you’re just as vital a cog in the great machine as the donors themselves. Click here for more info.


Participating or donating to people in the World’s Greatest Shave or events like the Leukaemia Foundation’s “Light the Night Walks” also helps in a similar way.
Here’s a speech I gave at the most recent Light the Night event about how I stayed happy during my treatment, and how the Foundation helped me during my treatment:


 
Other things you can do include donating to the Red Cross or
to the Leukemia Foundation, which can be done through the links below. These organisations are trying to find a cure and save people from having to go through this pain in the
first place! 

 

And make sure you share this with others and on your Facebook Walls so as many people as possible join up and so more lives can be saved.

Another way you can donate – PLASMA! And why it’s so necessary!
The name of a treatment I used to get – Intragam. Not Instagram. #INTRAGAM.
This was a blood product I used to get once a month to help with the chronic inflammatory disease process and nerve damage my#bonemarrowtransplant gave me. Though it wasn’t fun, coming in every month to be plugged into an IV pump for over 2 years, it likely did delay further damage and was one of many blood products which have kept me here.Every 200mL bottle takes 7.5 ENTIRE Plasma donations to create, if we’re strictly speaking numbers of immunoglobulins, aka antibodies, specifically IgGs (antibodies essentially confer immunity to people who can’t produce antibodies on their own, and mitigate some autoimmune disease processes by triggering suppressive pathways of your immune system) per mL, dosage wise. I used to get around 750mL of this stuff. Every month.But each of these bottles contains a mix of 1000 individuals’ IgGs. It took a literal village to keep me going for a time there! And plasma, like blood, is not only easy to donate – it can be done every 2 weeks, and, as you can clearly see, is really needed.

More info on that process, on how easy it is to donate blood, how it actually is healthy to do so (each plasma donation burns 450 calories – whole blood, 600!), and how joining the list to donate bone marrow (and even donating bone marrow itself) doesn’t require, at any point, a needle in your bones at nikhilautar.com/donateblood
#redcross #vampirecup #blooddonation #intragam#notinstagram #everydonationcounts #doit!#spoonies #spoonie #chronicillness #chronicpain#nervedamage #peripheralneuropathy



https://www.facebook.com/musingsofamedstudentpatient <– If you or a loved one needs help or if you enjoy my blogs or if you’re interested in medicine, like my page on facebook =]

Blog

Bone Marrow Transplants. They Seem Scary…. But They’re Really Not. And They’ve Saved Me. Twice.

2 years ago, to this day, I received a bone marrow transplant.

It was the hardest thing I’ve gone through, as a cancer patient.

I spent weeks stuck in a bed, subsisting on unsolid food, barely drinking and in intense pain – even with morphine!

And for months after it, I was fed into a spin-cycle of maladies, starting with my skin feeling like it was burning for days on end without relief, followed by months of sickness and huge shifts in weight and ending with the a relapse and the knowledge that I’d have to go through it all again in my second transplant.

But it saved my life.

And I’m eternally grateful for it and for my donor.

One thing that may astound you is the fact that the transplant took only thirty minutes, didn’t involve any pain – it was just a minor, drip-like infusion!

Even DONATING bone marrow doesn’t mean having a needle put into your bones these days – at any point!

Bone marrow transplants are the cure to variety of illnesses – not just blood cancers/disorders which I speak about mainly on this post.

It has cured AIDs, which has only happened twice, EVER.

And it’s the only way possible for a mammal to change blood types.

Personally, I’ve had 3.

Click here to skip to a particular section of this post:

How it works

Finding a Match

How YOU can become a donor

What happens to the donor

What happens to the patient

How It Works:

So how does it work?

 

 

Basically, a bone marrow transplant, also known as a haematopoietic stem cell transplant, replaces your old bone marrow with someone else’s. You can also use your own cells for this, but for this post, I’ll only talk about allogeneic transplants, ones you get from other people, rather than autologous ones which you get from yourself.

Bone marrow is the soft, spongy tissue inside your bones which make your blood. It’s usually filled with haematopoietic stem cells – cells which rapidly divide over and over again and transform with the aid of certain hormones and chemical messengers produced by your body to eventually become your blood cells.

When a disease process affects these stem cells, they cause a malfunction in your blood cells which has a wide range of complications as your blood is responsible for delivering oxygen and nutrients to your body, and also your immunity, amongst other functions. If that disease involves a change in the actual DNA sequence of the stem cells and divide so it begins to take over the normal stem cells (in other words, if the disease is a cancer) and chemotherapy is not an effective cure for it, then a stem cell transplant can become the best curative option.

Now here, I wanna make it clear what I mean by “Bone marrow transplant” in this post. I’m referring specifically to Allogeneic bone marrow transplants – one received from SOMEONE ELSE. It’s possible to have an Autologous BMT too – in a procedure where your own blood stem cells are collected, so that they may be injected back into you after treatment. This is usually done to get very high doses, or treatments that would otherwise have killed off your vital bone marrow for good, into a patient, without killing them. The collected cells are stored and injected back into the patient after treatment has taken effect and remnants of the drugs have left the body.

What an allogeneic stem cell transplant does is get someone else’s bone marrow, blood producing cells into you. Not only does that allow for, if required, the same high doses of chemotherapy and other treatments to be given, it also gets someone else’s white cells (white cells are blood cells, made in the bone marrow) into you – their immune system. And this had the added effect of them attacking your cancer cells, where your old immune system couldn’t (often, cancers have special mechanisms by which they can evade your immune system), or of getting a new immune system in there to replace the old one.

The Procedure:

An allogeneic transplant involves, on the patient end, first, some chemotherapy and radiation to the entire body (blood production, though often limited to bigger bones like your sternum or hip bone in adults, can occur in any bone in the body) to ablate, or kill off, your old, diseased stem cells. Less intense chemotherapy regimes can also be given, in diseases with lower agressiveness or in patients who can’t take as much of a battering (my second transplant, due to all the drugs and radiation I’d had previously, was done using a “reduced intensity chemotherapy” regime. Many older patients are now able to get bone marrow transplants where they weren’t before due to these regimes).

The major side effect of this step is that your blood production halts, or stops outright, meaning you will be much more likely to bleed and bruise in that period and be very susceptible to infections – which are even more life threatening as you don’t have white cells to kill them off. Many of the drugs also have side effects of chemos (they often are chemos), and the radiation itself can cause severe mouth ulcers in some. This in itself makes the procedure very risky.

After this is accomplished, you inject your donor’s stem cells into your body in order to replace it. The donor’s stem cells take around 3 weeks to engraft, or take residence and begin working, in your bone marrow and from then on your donor’s stem cells become your own. Which means that from now on, you’re producing YOUR DONOR’S blood cells instead of your own.

The intent is not only for his (or your donor’s) cells to take over and start making proper blood cells again, but also to stop your old stem cells from coming back. You see, when his cells take over, his immune system does too. This is what is trying to be achieved in the whole procedure actually, a change in the immune system – as his immune system, being different to yours, will, hopefully, kill off any old stem cells of yours (including your cancerous ones) that remain. This is called the Graft Versus Disease effect (GVD).

The problem is, there is also a good chance that his immune system will also find your body’s other organs to be foreign to it and it will attack them too. This is called Graft Versus Host Disease (GVHD). And it is a big reason why it’s seen as even riskier than even chemotherapy and radiation.

In order to reduce the impacts of GVHD you are given some immunosuppresive drugs, which, as the name suggests, suppresses the immune system. When given early, it also prevents your old cells from coming back from the radiation and chemotherapy to cause rejection.

Examples of these are methotrexate, and cyclophosphamide, given before transplants to reduce both the risk of acute GVHD and the chances of your immune system from rejecting the donor’s stem cells, cyclosporine in the long term to manage chronic GVHD (GVHD that presents 6 months to years after a transplant) and prednisone, a corticosteroid, to manage acute GVHD (GVHD that presents after engraftment. Prednisone can also be given long term to manage cGVHD, and many of these drugs are used at different points).

GVHD can be life threatening, if not managed well. GVHD is a big reason why a transplant is seen as a very risky procedure. And though acute GVHD is more dangerous, chronic GVHD can have long impacts into the future.

But it’s not all bad news. Actually, the presence of GVHD and having a more severe version of it is correlated to a higher cure rate because the GVD will also be stronger. It’s a balancing act. You don’t want too much severe GVHD but a little bit is good as it indicates a good level of GVD (graft versus disease) as well.

And if you catch GVHD fast, and do as recommended by transplant hospitals, and rush to emergency, or call up your doctor immediately to initiate treatment in the critical periods (up to 3 months after a transplant, or when you feel classic symptoms of GVHD like fevers, gut pain/diarrhoea, skin prickling/redness/rashes or eye dryness. It can affect many other organs in different ways too) – it is often gotten on top of!

Finding a match:

When you’re being matched to your donor, it’s very preferable to have a complete HLA match. Basically your HLA is how your body recognises and differentiates your own cells from that of other foreign cells. You inherit your own ‘HLA settings’ from your parents, half from your mum and half from your dad and there are many HLA subtypes people can have, making it very unlikely for two random people to be matched to each-other.

Usually there are 6 main subtypes they look at when they’re trying to find a donor to match for you (they can go to 8 or 10 or more as well – I was a perfect 10/10 match for HLA with my donor). You have a 1/4 chance of any sibling being a match for you. In fact, transplants from siblings get lower amounts of GVHD, so they’re seen as less risky (by the way – even being a 10/10 will result in GVD and GVHD occuring, as there will always be little differences between your donor’s immune system and your own). But outside of your immediate siblings, the chances are very low due to the sheer number of possible HLA subtypes combinations that there are. But they do happen.

That’s where the bone marrow donor registries come in.

How you can become a bone marrow donor:

Bone marrow donor registries are usually done by country. It’s basically a huge database of people’s HLA combinations.

The process of actually joining the registry varies from country to country but NOT ONE involves too much pain! NOT ONCE will you have to get a sample taken from your bone marrow! What they need is a tissue typing test – a test which checks which HLA subtypes you happen to have.

In the United States, this involves simply buying a $5 test simply taking a swab of the inside of the your mouth and sending it away. In Australia, it involves a 20mL sample of blood, and has to be done while giving a blood donation (which takes less than 10 minutes and is no more painful than a blood test by the way) – and you have to ask and fill out a form in order to do it. This is done to ensure that everyone on the registry will be willing to actually give the donation. In the US a lot of people opt out of actually becoming a bone marrow donor in fear of the procedure, so finding a match doesn’t equate to finding a donor, which it usually does in countries using Australia’s approach.

With the help of my doctors, I was extremely lucky to find 5 matches, from around the world, and have had 2 bone marrow transplant from them.

Only 60% of people can find one.

So we need you to join up on the registry. Especially if you’re from an Asian or Indian or Middle Eastern background. It is more preferable to find someone who’s similar to you – whether it be by race, gender or age, and these races in particular have critically lower rates of people joining the registry.

Find out how, if you live in Australia, by clicking the link below:

http://www.abmdr.org.au/dynamic_menus.php?id=1&menuid=2…1

And if you live elsewhere, click here:

http://bethematch.org/Home.aspx

The procedure for the donor:

The actual procedure rarely ever actually requires harvesting of actual bone marrow either (95% of the time it doesn’t and a good portion of the other 5% choose to go through the surgery process because they have access to general anesthetic through that pathway). The donor has to go through a series of subcutaneous injections, small injections under the skin – usually into the belly or arm, of a hormone which increases the activity of stem cells and causes them to enter the blood more. From there, blood is collected from the donor from one arm, siphoned through a machine which separates the stem cells from the regular blood, and the regular blood is injected back into the patient’s other arm.

There is a chance that you’ll need to have surgery to remove actual bone marrow from your bones as well. Though it is unlikely nowadays, the procedure is done under general anesthetic meaning you won’t feel pain from the operation, and is very safe too.

The procedure for the patient:

The actual transplant is a bit of an anticlimax. The stem cells, collected in a bag, are infused into you, just like a saline drip, except with blood. In some cases, or in cases where a complete match wasn’t found, you can get a reaction to the actual cells.

What is dangerous during the procedure is the chemotherapy and radiation which kills off your original stem cells.

As with any systemic chemotherapy, your fast-growing cells are killed off. This includes not only your bone marrow, but also things like your hair and the lining of your gastro-intestinal tract. This leads to very low blood counts and hence tiredness, very low immunity and higher chances of bleeding, as well as abdominal pain and diarrhoea or constipation. There are a range of other side effects too such as nausea and taste changes which aren’t pleasant to say the least – but all of these can usually be controlled with medications.

The low immunity in particular is of huge concern. Your neutrophils, the white blood cells at the front-line when fighting infections, plummet to 0 and not only do you become more susceptible to infections, you also become very weak at fighting them. In fact, it’s the leading cause of death in not only bone marrow transplants, but also in chemotherapies and even in hospitals. Hence it is important to stay away from other people who may have infections during a transplant, and also important for appropriate hygiene measures to be taken, such as always sanitising your hands before allowing others (including doctors and nurses) to touch you and being placed in a room where the air is always being filtered.

Often, despite these measures, you can still get infections from your own body – it’s something you can’t help. These usually manifest as fevers or shakes or coughs and the like and are treated very aggressively, as your body has little to no capability of fighting them. Don’t worry though – medications can take the place of your immune system while it’s weakened – so infections are mostly controlled if caught early.

The total body irradiation is another factor which comes with a range of side effects. The procedure itself is a little daunting at first, involving being beamed with radiation for 20 minutes whilst being placed in a box and held still by rice bags, but after a few times (it’s done once a day on a 5-7 day cycle), you get used to it.

Again, it will cause your blood counts to drop and subsequently cause the cascade of side effects that come from that but it also causes skin irritation and in particular, mucusitis – or pain in your mouth and throat which, in my transplant, was the worse symptom. I found intense pain on swallowing – even if it was water or my own saliva and hence spent almost 3 weeks eating little more than less than a tub of gravy or custard and little sips of water. A morphine pump wouldn’t even help with the pain, and the sad thing is, 85% of patients who go through total body irradiation get this. But there’s a way around this too – a nasogastric tube which allows for food and water to be pumped into your body rather than forcing you to swallow it through a very sore throat.

There are also other ways of doing transplants which don’t involve the radiation aspect of it – and my second transplant is an example of it. It was a transplant whose pre-conditioning only involved chemotherapy(and that too a less intense variety of it) protocol known as RIC (Reduced Intensity Chemotherapy).

Bone marrow transplants are complicated, often risky procedures. They’re hard and often scary, and unfortunately necessary for some. But they give a second chance for people facing cancers, and other blood related or autoimmune diseases, at life.

I can never be thankful enough to my 2 donors for what they’ve given me – a total stranger – to them. And they haven’t asked for anything back from me.

They’re angels.

I hope for a day where no-one has to go through the things I went through during my bone marrow transplant. ‘Til that day comes though, be sure to join your country’s bone marrow registry and become an angel yourself.

 

To join the registry:

USA

www.bethematch.org

Britain/UK: https://www.nhsbt.nhs.uk/british-bone-marrow-registry/how-can-i-help/

Australia: www.abmdr.org.au

Brazil: http://www2.inca.gov.br/wps/wcm/connect/orientacoes/site/home/informacoes_sobre_doacao_de_medula_ossea

Canada: https://blood.ca/en/stem-cell/onematch-information-new-registrants

India: http://mdrindia.org

Those from other nations (though this is aimed at professionals, you can search for your nation, and find organisations that have and contribute to registries there):

https://share.wmda.info/display/WMDAREG/Database;jsessionid=269E92F9EA24171227BF11FE71508EDA

 

Blog, Inspiration/Motivation/Help, Medicine and Science

Nurses. True Angels in our Wards.

Last post:                                      My Story:                                         Next One:
You see it all the time on those medical shows on TV. 
You see a doctor, who could probably earn millions modelling
on the side, running through hallways and corridors, hanging IV drips, getting patients
food, finding time to sit down and talk patients through all their fears and
concerns – basically doing anything and everything to help the patients through
all of their troubles. 
I guess that’s what I’d expected would happen when I was told I had cancer.
My first week in hospital, however, would turn out to be a shock to my system. Even on the
day I was diagnosed, I saw my doctors for no more than thirty minutes. 30
minutes! And that would turn out to be the longest single session I’d see a doctor in
a day, outside of emergencies… well… ever. 
In the end, it was the nurses who did the REAL work.
I’d been brought up, maybe through the media, maybe through cultural
perceptions – probably through ignorance – thinking that a nurse was just an
over-hyped house-maid. 
As it turned out, it was a nurse who placed my first canula
in emergency. A nurse who took my bloods every morning. A nurse who’d be in
charge of injecting chemotherapy through my central line – a long plastic tube
that pumps medicines from the veins in your neck to your heart. Hell, it was a nurse who
put that in too!  
If it wasn’t for their badges and uniforms, I wouldn’t have known the difference between them and the doctors. 
In fact, I would’ve thought that they were the doctors. 
Because the thing I found most astounding was that despite all their work on top of these vital responsibilites, despite taking care of, at times, half a ward-full of critical patients… despite their unreasonable shifts and rosters, they still managed to find the time to do all those I thought doctors would be doing.
Yeah, it was a doctor first gave me the bad news. Yeah, he was the one who prescribed all my medications. Yeah, he was the one whose knowledge and experience I could trust.
But it was a nurse who sat down and hugged me with my parents that day after I’d been told I had leukemia. A nurse who told me that my journey would be hard, but reminded me that I could survive nonetheless. A nurse who would sit down and just chat when I just couldn’t find it in me to sleep for the pain and worry. 
And no matter how many cards we gave them in thanks, no matter how many chocolates or donuts we brought in – the true testament to their generous, giving souls, was the fact that they ALWAYS shared them with all the staff on duty. 
Personally, for me, they’ve always been the balm that eased the sore of treatment. The girls and guys who’d go beyond their strict professional duty and hold my hand in emergencies, keep me calm during procedures and just keep me cheerful through their words and their, at times, crazy antics.
And if it wasn’t for them, I wouldn’t be the man I am today.
I remember the day I came back in for my second round of chemotherapy. My heart was racing, pulse rising from my usual 60 beats per minute to well over double that, and it stayed that way for most of the day. 
I was back in that damn place, stuck in the tiny confines of that room for what would end up being fifty-six consecutive, bed-ridden days. And the crazy thing was, I didn’t even realise I was in trouble. I hadn’t felt apprehensive or anxious about all this… I’d unconsciously bottled it all up. 
But then, as I walked around the corridors and glimpsed the door of my last room, I saw this. 
They’d known that I was a fishing tragic and that that was exactly what I’d be doing in my 2 week break. No matter how tiring, risky and stupid.
And, just realising that the next few weeks of pain and torture would be eased by these people, these amazing souls who made their job a profession dropped my heart rate back down to normal. 
They’re angels, all of them. The humblest, most devoted, most under-appreciated, yet most vital aspect of hospital life. And in my eyes, they’re the lynchpin of our medical system.
So I hope after reading this, that next time a nurse tells you that you’ll have to wait another half-hour in emergency, you’ll understand it’s probably because there’s somebody who’s going through haemolytic shock due to
blood loss just behind that ED door. Next time a nurse insists that you leave a friend or family members bedside, after initially getting upset, you’ll see that it’s because if they didn’t, other patients’ rest may be in jeopardy. Next
time you’re about to berate a nurse for getting the bloods done a little late that morning, it’s probably because they had six other patients to medicate before they’d even gotten the chance to pull bloods out of a line.
And I hope that you’ll forgive them. If not for their compassion, dedication or graciousness, for the fact that you’d expect the same of them if you were the one on that bed.
Don’t worry – I know there are many roles in healthcare that
do just as amazing work – social workers, dieticians and the hospitality to give a few examples. I’ll be doing them justice in later posts, don’t worry about that. 
As for doctors, I do believe they have to up their game in helping the people they care for beyond just their physical condition. Read more about that here
https://www.facebook.com/musingsofamedstudentpatient <– If you or a loved one needs help or if you enjoy my blogs or if you’re interested in medicine, like this page on facebook =]
Blog, Inspiration/Motivation/Help

My Story.

“The good news is you’re 17 and you have leukemia, but the bad
news is… you’re 17 and you have leukemia.”


I’d sorta known it was coming. It had been months since I’d felt
right. I’d come home from school and sleep ’til eight. I was off my food. I’d been getting weaker and weaker, losing my strength and speed week by week despite training almost 2 hours a day. I’d put it down to exams and stress. But damn… it was far from that.


Now what? All my – and my parents’ – last hopes had extinguished with  the final test; a bone marrow biopsy. It hurts just as bad as it sounds… they stick a needle through your hip and suck out what’s inside. In my case, as a healthy, strong, near-adult, it took 3 doctors and lots of sweat just to pierce the bone.


 We hoped it was anything else but that ’til that. 
My critically low blood counts? Maybe I had some vitamin deficiencies? My hour long nosebleeds? It must’ve been the dry air being expelled from the heaters. Sleeping 16 hours a day? Maybe I was just a slob, or tired from all that studying.

In the end though… that was all denial.

Questions raced  through my  mind…

 


What had I done to deserve this?
 What had caused it?

 

 WHY ME?? 



I hadn’t done anything bad to anyone as far as I’d known… I was fit, hard working and I ate healthy. 

FOR GOD’S SAKE… I WAS ONLY SEVENTEEN! 

 Wasn’t cancer for old people? Or those
who smoked of something??


 Then I asked that final, scary question. 


“What are my chances…”


This man I’d met just yesterday glanced at his peers and looked me dead in  the eyes. 

“About 10-20% that you’d survive the next five years.”

I cried. For ages. No matter how much my parents, nurses and close  friends would try and console me – I wouldn’t listen. How could I? I  was 17 and probably wouldn’t live to see 21. 

What would you do?


I did those things that people don’t  know you’d have to do before chemotherapy. A heart scan, lung function test and lots of blood tests, to get a baseline – chemotherapy apparently affects all those things. A sperm donation. Apparently it can affect that too. 


 Amidst all this was the constant messages from everyone – from my  parents, relatives and close friends to nurses – people who’d only known me for an eight hour shift, max. All told me that it’d all be fine. That I’d be strong and I’d get through it. One nurse even had the nerve to say that the next few weeks for me would be filled with pain, vomiting, diarrhea and all kinds of awfulness. How dare she, when I was at my lowest?? How could she be so cruel?! 
I kept questioning their words.

How could they know what I was going through? How could they take away the fact that I only had a tiny chance of surviving?

 

But in the end, I had a choice, even if I didn’t know it at the time. And I realised that choice, when I decided to do one simple, yet extraordinarily thing. 
I took a step back, and looked at what had happened to me, as if it had happened to someone else. 
And when I did that, those negative emotions dropped away. From that objective perspective, I was finally able to question  what I was doing, and ask myself, what should I be doing instead. 
I realised that I had the cancer now. No matter how much I wanted to, I couldn’t go back in time, and change that. So what was all that misery I was going through doing for me? What was it accomplishing?
Nothing. Other than making me feel WORSE about everything that was going on.
Why was I doing that to myself?
Because in the end, I realised that all those emotions – they were coming from me. MY brain, MY mind. Because it was, that meant that I could control how I acted.
 


It’s through this attitude that I learned – there’s always a second way to look at
things. 

And when you take a step back, and question what you’re doing, you’ll be able to see the path that leads to you being happiest and healthiest in life.

From there… taking that path isn’t the brave, or strong thing to do going forwards. It becomes the only logical thing to do.

This mindset helped me find a way to deal with the cancer.

And if it could help me see something to smile about, days after being told I’d probably be dead in the next few years… It can help you accomplish whatever you want in life too.

 
I was feeling cursed for getting cancer young.
But wasn’t it also a blessing? Being young meant I wouldn’t have to worry about raising a family, or have to care for myself on my own in the hard times to come. I had great, funny parents, who’d be willing and able to help me in any way. I had great friends who’d support me the whole way through.
I was fit, I ate healthy, and I could eat a LOT – so I  could take the hardest treatments, and wouldn’t waste away as some people do during chemo.
So maybe the bad news was that I was seventeen and had leukemia. 
But… the good news was, I was SEVENTEEN and had leukemia.
Why was I feeling doomed about my chances, when it was just that? A chance. My doctors, they wouldn’t be doing any of this to me, if they didn’t think it could work, right? 
 
That 10 – 20% was beginning
to look much bigger in my eyes.
 

I started reading a book given to me by my mother. It was about a doctor who’d happened to develop bowel cancer. He witnessed the grief the other patients endured during their treatment, but in particular, he was struck by how they acted like it was a death sentence. He asked himself one simple question… 

 
WHY?

Why did they feel down about something they couldn’t control? Why were they acting as if they  were definitely going to die? Why did they see the treatment as  only something that brings misery when wasn’t it also a medicine? The very thing that could get him through this? 

 
Why was he thinking like them?
 
By asking why, over and over again, he saw another way of looking at things…. And that made all his doubts, all the obstacles in his path seem like nothing.
 
Now  I could see that I was young, fit and hence more likely to survive. I was beginning to view the upcoming chemotherapies and bone marrow transplants as what it really was – A CHANCE OF A CURE, rather than just something that brought me pain and suffering. And from that nurse who’d told me of the horrible things I would encounter, I knew it would be hard. But WHY should I succumb to fear and believe that the treatment being hard and uncomfortable would undermine my survival?
Acknowledging the pain that was to come in my journey, and reminding myself of what all this was for, only meant that I wouldn’t give up, even when I was at my lowest. 
 
With that attitude, I KNEW I was going to get better.
 
And I’m still here. Two years, 6 rounds of chemotherapies, a near fatal dose of radiation and two bone marrow transplants later.
 

You may be thinking, that’s awesome man. Good on you.

But I could never do that. 

You may be thinking… that’s pretty cool… but how does that affect me? 

I want you to ask yourself 1 question.


WHY?


Why wait for cancer, like I did, to live a happier, healthier life?
 
Those little steps I did, I still apply, whenever I can to life. And it’s why I’m always happy and always looking at the better, more constructive way of looking at things.

So, what had cancer taught me?

And how could this help you?

Obviously, my whole battle has changed my view of the world and how to handle adversity. And you may be thinking that you simply couldn’t do those things if you were in my situation, or that you’re not strong enough to apply it into your life.
But the major ideas, the things I did to get over cancer are simple ones – THINGS YOU ALREADY DO – which can help you almost accomplish anything you want in life. 
You can’t get everything you want, you can’t cheat death. But they will help your chances along a damn sight. And remember – you will ALWAYS have a choice on how you view your life. 
Sometimes it’s just hard to see that. 
 
And there’s no reason you should wait to make a change that could change your life for the better.
A talk I did about my story… that outlines how this can help you guys too! 

 

So Remember:

– There is ALWAYS a second way to look at things.

– If you’re doubting yourself or afraid
to do something or afraid of what people are thinking of you… ask yourself WHY over and over again, until you see a second way of looking at things. Something you can control. Something that may help you get your goals in life or the fact that you always have the choice on how something affects you.

Too often we don’t do what we really want to because of the fear of rejection or what others would think. Why do we have to do that? Why should we stop ourselves from enjoying who we are for others when we can disregard them and be happy with ourselves and our choices?

– Acknowledge that the journey to anything will be
hard, and plan ahead to overcome these. But instead of being scared of them, understand that just being able to foresee these challenges makes you more likely to get past them. Because you’ll have time to figure them out, you won’t be surprised and you won’t think you’ll fail in the face of adversity, but be MORE LIKELY TO GET PAST THEM.

So, here’s a few steps to help you accomplish your goals, or get out of a hard place with these ideas. It doesn’t have to relate to sickness like me (though it can) and if you ever need help getting there, post a comment down below or message me on my Facebook Page (I get messages from patients and regular people all the time asking for help or advice – and I’m glad to help).

Step 1 –> Assure yourself you can do it.

Everyone, and I mean EVERYONE, has something about them that can help them do anything. For me in my battle, it was that I was young. For others going through the same thing, it could be their faith, it could be their family, it could be the brilliant, top class care they’re receiving. IT COULD BE ANYTHING AND EVERYONE HAS IT. For someone who may want to make it to the top of a sport, it could be their speed, strength or, alternatively, their mind and ability to analyse and act on situations quickly and efficiently. If you want to make a top school or course in college or uni, or get a new job or promotion, it could be your ability to think quickly, your dedication or YOU COULD WORK ON YOURSELF TO HAVE THESE THINGS, bit by bit.

Remember, there’s always a second way to look at things. So if you can’t see something straight away, you will ALWAYS have, or can ALWAYS develop the characteristics, qualities or skills necessary to be the best you can be. And no matter how hard times may seem, you can always bust out of them.

STEP 2 –> Acknowledge the challenges in your way. But plan ahead and know that, because you know they’re there, you’re
going to blow by them.

 

 

 

So you’re full of energy, you’re pumped up, you know you can
do it. But don’t make that mistake of getting overconfident and wasting your
opportunities because of that, and don’t allow your resolve to waver when you find
yourself facing an obstacle. 
 
Life will be hard at times. But only if you make it so. 
 
I knew that the treatment was going to be tough. Excruciating.
Exhausting.
But I remembered that in the end, all of this would be left behind in the past and, also, that modern medicine would be able to ease all suffering. I knew that I’d have to limit visitors as my immunity decreased during chemos. But I had facebook, phones and technology to still be able to connect to people. I knew it would be boring. Technology could fix that too. 
 
For others peoples’ goals, challenges may present themselves
as distractions – things like too much gaming or social media or even partying too much. I should know, I spent almost a month wasting time before beginning to write this. But after a while of wasting time, ask yourself why? Why am I
having fun scrolling down facebook aimlessly when my real interest is the beauty I can make from taking and editing photos of nature? Why shouldn’t I enjoy studying maths when I can feel that satisfaction from finding out why I
was going wrong and next time getting those questions right? 
 
If you’re trying to lose weight or be healthier, you can
look at it from another perspective. Instead of enjoying downing a box of Krispy Kremes, think instead about the pain you’d get the next day from the stomach ache. If you don’t like running aimlessly, why do it? Try playing a sport you like, like basketball for me, or do other things – like playing laser tag or paintball or even just walking with a friend or a pet for a half hour per day.
 
The biggest challenge you’ll have to acknowlege is your own
laziness, or lack of motivation. You know that on some days you may be lazy, but remember your goal and all those things you have on your side to help you achieve it. When you don’t feel like doing anything, ask yourself why? Soon enough you’ll be back on target.
 
Step 3 – Research and Plan
 
Before you even begin to lift a weight or do a question or
write a word in a book, you should have an idea of what your actions will do for your goal and why. Going in blindly or overconfidently into anything will reduce your chances of success. But if you do your reading, and know where you’re going, you’ll get there a lot quicker. 
 
For me, in my battle against cancer, it was easy. I had
doctors who were doing that for me, and they could answer any other questions I had on my treatment and things like hygiene and what to eat. 
 
But in truth, it’s just as easy for anyone.
 
Don’t be afraid to ask someone about something. If you don’t
understand how a teacher did a problem, why should you feel stupid for asking her to explain it to you again? The second, and better way to look at it, is to ask yourself how much more stupid you would feel when you got the test back and failed because you couldn’t solve a similar problem? If you don’t know the best exercise regime for you, ask a personal trainer. They’re big, but they don’t bite.
 
And if they don’t know the answer, you’re blessed to live in
today’s society – where information or advice can be harnessed from the tap of a few keys and the clicks of you mouse. 
 
Step 4 –> Do
 
For me, I just had to sit back, eat as much as possible and maintain slightly higher levels of hygiene. I already knew I was going to make it – as will you – and I got to relax all day most of the time. 
 
For your goals, it may be a bit harder, but at the same
time, just as simple. 
 
When you’re preparing for that final game of basketball, and
all your research on the other team’s players and strategies are done, all you’ve got to do is get your body and your team ready to execute moves, shots and plays. So you shoot your shots. You lift those weights. You run those sprints. You dribble through cones and cones. If you’re in the gym, worried about looking weak compared to the older kids or bodybuilders, or slow against the sprinters on the track, don’t change your technique to lift more, or worse yet, give up altogether. Why feel that everyone thinks you’re weak, or horrible at what you’re doing when, if you look at it another way, you’ll end up in front of them in time by doing it the right way, consistently? You’d only look stupid if you hurt yourself by doing it unsafely. Why harm yourself to look
good for others? Read about how Nikhil overcame his fear of judgement and became the most confident version of himself here!
 
And when it finally comes time to that last game, you’ll
know that you’ve done your practice, you’ve got your teammates, your skills.
You’ll acknowledge it won’t be easy and that the other team may be good. But you’ll remember you’ve got everything on your side. And that you won’t doubt yourself on the court because of that. And that you’ve given yourself the best
chance of winning.
 
Life is all about giving yourself the best chance to be
happy. And I hope what I’ve written will help you do that. 
A talk I gave on this topic…

I really encourage you guys to share this one amongst your friends/family in particular –> especially with those who are in really tough circumstances. Hopefully it’ll help them find a way past their sadness and get back to being their best.


https://www.facebook.com/musingsofamedstudentpatient <– If you or a loved one needs help, message me here. Same deal if you enjoy my blogs, or if you’re interested in medicinish related stuff (don’t worry, I don’t get too technical and I always keep my blogs user friendly).