What I Learned From Tracking Every Penny I Spent for 365 Days - How to Financially Survive A Cancer Diagnosis

Being diagnosed with cancer is expensive.  Plus it’s an expense that comes out of nowhere.  Now we are fortunate in Canada to live within a publicly funded health care system – meaning that, for the most part, treatment, doctor visits, or scans, do not directly cost you anything.  This is massively helpful.  But what people don’t realize is that all the other expenses (e.g. time away from work, medications, support appointments) really adds up.

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Three Things Everyone Needs to Know When First Diagnosed with Cancer

The shock of being diagnosed with cancer makes your head spin. That’s completely normal. It throws you into a world that is so foreign and unwanted. It’s hard to know where to start or what is important to know. Read on, and start with these three steps:  

1. One Step at a Time, One Day at a Time

It seems like there are a million things that need to be researched and organized – a million questions that need to be asked and answered. But stop.  Slow down. Take a deep breath. 

Not everything needs to be addressed all at once. I often see people getting lost in the weeds of cancer. Some focus intensely on minor questions or details that they deem critical, but then they end up missing the big picture points that are actually critical for moving forward. Focus on one main task or problem at a time.

When I was diagnosed, this meant:

Day 1: Get an ultrasound organized

Day 2: Meet with the gynecologist

Day 3: Get a CT scan organized 

Cancer is a war – not a single battle. Plan your attack accordingly.

2. Get Your Life in Order

There’s no denying that a cancer diagnosis puts your mortality front and center. Prepare for the unthinkable… because none of us know what the future holds. Obviously, if you don’t have a will, now is the time to get one in place. But you need to go one step further. Completing an Advanced Care Directive (Living Will) before you begin any type of treatment will offer clarity to your family and friends in the unfortunate event that your health deteriorates further. Many hospitals and health regions offer free resources and forms. For the Saskatchewan Health Region, visit here: Advanced Care Directive.

You also need to organize your communication. Having a clear path of communication to your friends and family will simplify your life. You can’t spend your time emailing, texting, and phoning with every update, so organize a way to quickly communicate. This might mean having a friend or family member act as a ‘point person’ to field questions. You provide information to one person, and they circulate that information to the rest. Additionally, there are so many options here – blogs, private/public Facebook groups, What’s App groups. Pick the best fit for you. For me, this meant setting up a shared photo gallery that friends and family could access to see pictures of me post-surgery and during treatment. For me, showing people that I was recovering (instead of them just hearing) really put their minds at ease.  

Whatever way you decide, be sure to put your own privacy and boundaries first. You’ll find that well-intentioned people will ask for your time and energy… but these are finite resources now. People may be insistent, but don’t be afraid to decline phone calls or redirect people back to your point person for updates and information.

3. Be Persistent but Polite

You have to be your own advocate. Listen to the voice inside of you, and follow through if something is really nagging at you. No questions are dumb questions. You aren’t wasting anyone’s time. When it comes to your health, you are the only one that has to live with the consequences of what is happening to your body so make sure you are satisfied with both the answers and care you are receiving.  

Now, this doesn’t mean you need to be demanding or short with people. I like to say, “Be persistent but polite.” Just like in every other area of life, being rude doesn’t often make people want to go the extra mile for you. Health care is no different. You will get further if you reinforce your concerns in a polite and persistent manner, rather than making demands.  

When you’re thrown into the world of cancer, it’s difficult to know where to begin. Start with these three steps, and you will be on a path that supports the clarity and calmness that you will need to fight the big ‘C.’

Photo Credit -Nancy Newby Photography

As featured on SaskPress Link Below-

https://www.thesaskpress.com/three-things-everyone-needs-to-know-when-you-are-first-diagnosed-with-cancer/?fbclid=IwAR3hUnVCY56Q5vd91dVJsSYMQ9J95vlBkm2YQojYAEc9bVLz-_thVgVBzTY

Connecting Surviv(her)s – Breast Cancer Healthline App

            Since being diagnosed with the big C, all my efforts surrounding cancer have been focused in a few key areas.  Areas that I believe, will make a difference in the lives of women fighting cancer.  Support the much-needed research that will eventually find a cure and connect young female cancer survivors.  

            Connecting survivors isn’t as straight forward as you would think.  The problem is that a lot of people or organizations treat all cancer fighters the same.  You have cancer therefore you should be able to connect.  This couldn’t be farther from the truth.  How am I, as a 30 year old female with ovarian cancer supposed to connect with a 70 year old man with prostate cancer?  It’s just not going to be the same cancer experience.  There needs to be a way to connect cancer fighters who are dealing with the same side effects or undergoing the same surgery.

            Cue the Breast Cancer Healthline App.  This is a FREE app that connects women fighting breast cancer based on their individual interests and concerns.  Within minutes of downloading the app, I was chatting with survivors from all over the world who were facing the same issues I am (long-standing effects of my surgery, healing relationships post diagnosis).  These women just get it!  It’s amazing to not have to explain yourself or what you are facing because the women you are connected with have all been there too. Breast Cancer Healthline treats every woman as a unique cancer fighter – just the way it should be.  

            Over the next month, I’ve partnered with Breast Cancer Healthline to share with you my first-hand experience.  I’ll be exploring different features within the app, hosting an In-app live discussion, and sharing the connections made to help with my life after cancer.

            Following me here or on Instagram/facebook (@amydeepharmd) to learn more about my experience with Breast Cancer Healthline.

 

In the meantime…. Download the free app here —->  https://go.onelink.me/faaH/30494bba

 

Being a Young Survivor at the Walk of Hope

It's tough. It's draining.

This past week, I had the honor of being a spokeswoman for Ovarian Cancer Canada's Walk of Hope.  What a wonderful opportunity for me.  What a wonderful event to bring people together and get behind a disease that desperately needs more support. 

Events like this are tough as a young survivor.  Your own health and immortality is still so front and centre.  I look around at the other survivors and these women are different than me.  They are older, some MUCH older.  My struggles, my challenges, are different.  It's tough to relate or find comfort when you feel like you don't fit in. 

I asked one of my girlfriends, "where are the other young survivors?"  Have they all passed away?  I'm I one of the few that are left?  Maybe this is partly true but I don't think it's the only reason. 

When the feeling of your own diagnosis are still so fresh, it's difficult to show up at events which rip that wound back open.  I've heard from other young survivors, they avoid these type of events as they are too draining and exhausting.  Who can blame them really? 

amydee[pharmd]

What You Should Never Say to Someone With Cancer

Some days it seems like cancer is all around.  As a friend or family standing on the sidelines, it’s difficult to know what to say or do when someone you love is facing this terrifying diagnosis.  As both a cancer pharmacist and cancer survivor, I have learned what works and what does not.  Below are three tips when talking to someone with cancer.

1)  Don't Ask For a Miracle

Cancer is often thought of as just one monstrous disease but it is actually a thousand differ diseases all under one umbrella term.  Some types of cancers are deadly but others are curable.  Saying to someone that you’re ‘praying for a miracle’ when a cure is not only probable but likely, can be both startling and insulting.  Without knowing the specifics of a diagnosis, it’s impossible to know the outcome.  Some types of cancer need medicine and science rather than a miracle.

2) Don’t Ask ‘What Can I Do’

‘Let me know what I can do for you’ is a reflex statement almost entirely empty of meaning.  Instead of asking if there’s anything you can do to help - just do.  Leave supper, shovel snow, or walk the dog.  It does not have to be complicated or involve a lot of planning.  If you want to help - just do. 

3)   Don’t Over Do The Positivity

Everyone has bad days and this doesn’t differ after a cancer diagnosis.  It is completely normal and allowed.  But some feel the only way to interact with someone battling cancer is to flood the conversation with positivity.  There is nothing more irritating than having rainbows and sunshine shoved at you when you really just need to get something off your chest.  Statements like “well at least you have…” or “look on the bright side…” are not going to be helpful.  If someone with cancer is expressing a frustration, listen.  It’s that simple.  Listen, provide your opinion, and move on. 

Every cancer is different and every person touched by the disease is impacted differently.  These three tips will help you to be a great asset to family and friends.

 

The Most Tired I Have Ever Been

I feel like I talk about the fatigue associated with chemo treatments SO much but I realized I have never written about it here!  It has been such a huge barrier for me that it deserves mentioning and it's own post.

The fatigue is like taking the day you did the most manual labor.  For me, this was a day I helped my dad (cattle rancher) move cows between pastures and hold a branding.  It was windy, dirty, and hot.  At the end of the day, everything ached.  If I take this day, times it by 100, then have the feeling that my body now weighs double the actual amount... it might comes close to the level of fatigue chemo caused me.  It's like your entire body is plastered to a bed and even rolling over or walking across your house is an enormous amount of work.

I use to hear people with cancer complain about fatigue all the time.  I would suggest what literature or experts suggest: moderate exercise and good hydration.  In hind site, this is so stupid!  Exercise!  I can barely move my leg off of the bed.  I tried 'exercise' but for me, this was completing three sun salutation yoga movements.  That's it.  That's a huge difference from what I normally consider exercise (as a nationally ranked powerlifter, it usually means putting upwards of 300lbs on my back).  It's just not a helpful or practical recommendation.

That is the beauty of having a cancer diagnosis and walking through the hell that is chemo.  I am now heading into a phase of my career where I am going to be SO much more helpful to my patients.

amydee[pharmd]

Ughhhhhhhh

My last cycle of chemo was a bit different from the rest.  I typically receive chemo each day Monday to Friday every 3 weeks.  This past Monday was a holiday here so the Cancer Centre was closed.  I was left with two options: be admitted to hospital to receive Monday's treatment 2) Condense 5 days worth of chemo into 4 days.  In reality, the first 'option' wasn't truly an option because I was pretty much told out right that I wouldn't get a bed because the hospital was over capacity.  So I settled into receive the same amount of chemo over a shorter time frame.

It was awful. The fatigue was a little less than previous cycles but the nausea was worse and mentally it really got me down.  Just today, some of the pain and nausea has broke.  It's been the most difficult cycle without a doubt.  

Through this process, I have long since realized that emotions are just emotions.  There are times when it feels good to cry and let go and it doesn't have to mean anything (e.g. depression, Amy's loosing her mind), it just means to feel and honor the moment life has placed you in.

amydee[pharmd]

 

What Scares Me the Most

I'm closing in on the end of my treatments!  You would think this would be a time for celebrations and I would be excited to get back to 'normal' life.  I'm not excited. I'm scared.

Its comforting to have a plan to kick cancer's ass but when the plan is complete, I feel like I'm letting my guard down, giving cancer an opportunity to come back.  Chemo kicks the shit out of you but it's your defense.     

I've heard many people talk about 'scan anxiety.'  This is having anxiety surrounding any scans (CT, PET, ultrasound) to monitor for recurring cancer.  I didn't think this was going to be much of an issue for me but now that I am within weeks to my first baseline scan, I am starting to feel worried.  The type of cancer I have, can recur so there is a looming feeling of waiting for the other shoe to drop. 

Like every other aspect of cancer though, the only way to get through it, is to take it one day at a time.  That always has been the plan and that's what will continue to be the plan. 

amydee[pharmd]

Nothing but Patience

If being diagnosed with cancer has taught me one thing, it's patience.  Wait to be diagnosed, wait for blood work, wait for chemo to infuse, and wait to recover.

I'm not a patient person but cancer doesn't leave you with any other options.  After a week of chemo everyday, it takes me another full week of being in bed to recover.  I get to live life one of every three weeks.  I've come to accept this is my normal and I don't fight against it.  It's frustrating, boring, and goes against my internal motivation but there is no other way.  You have to allow your body to heal however it needs.

Patience is just one of the many lessons cancer has to teach.  If I can take away patience from this experience and use it in other areas of life, I'll consider myself a good student.

amydee[pharmd]

 

 

Back to Chemo Jail

Going through these cycles of chemo is awful.  You fight and struggle to get to a point where you feel like yourself again - just in time to go back and start another cycle.  

This past week (week before chemo cycle #3), I felt great.  Not a 100%; as I'm still late to get up in the morning and back in bed resting usually by 8pm.  But able to leave the house on my own, go shopping, my appetite is back, and I spend most of the time laughing and joking.  Life feels so wonderful when you are let out of chemo prison.  

The trouble is going back for another cycle.  It's true that each cycle is different but the honest truth is that each cycle is a different kind of awful.  So the Sunday before chemo, I'm resting as much as I can, preparing for the sick days to come, and doing things I enjoy.  Soaking up each chemo free hour.

amydee [pharmd]

The Worst Thing You Can Say to Someone With Cancer

I receive so many positive comments and messages that provide me with the strength to endure some of the darkest moments of having cancer.  For these messages - I am eternally grateful. But sometimes, despite the best intentions, people say the wrong thing.  No one wants to be THAT person so what is the worst thing you can say to someone with cancer?

What strikes a nerve with me (and I'm sure this differs among people with cancer) is being told "miracles happen."  Ummmm what?!  Why do I need a miracle?  I need science.  I need medicine.  I need a great health care team.  But I do not need a miracle. 

Perhaps it's because we think of cancer as a disease that takes lives and therefore you need a miracle to survive.  There are SO many different types of cancer - some with awful endings but others with cures.  So before we pray for a miracle - lets see if modern medicine has the answer.  

 

The Signs and Symptoms

So many of my girlfriends ask me about how I knew there was something wrong?  What was the sign? or symptom?  In hind sight, could I have caught it earlier?

Such great questions!  As women we need to discuss this more.  We need to be open and honest so we can start saving our mothers, sisters, wives, nieces, aunties, friends, etc...

This is also so frustrating!  My symptoms were so unremarkable.  The most troubling symptoms was heartburn - really terrible acid reflux.  I took tums and zantac but maybe I had an ulcer?  I had just gotten married and wedding planning was likely one of the most stressful events in my life (more than my doctorate or my cancer diagnosis).  Don't get me wrong - I love being married and love my husband but planning a big wedding is SO not my thing!

My ONLY other sign was some mild bloating.  It didn't really come or go and wasn't affected by food.  It was just mild distension - like I had gained weight.  Which was highly probable as we JUST spent 2 weeks in Italy and Greece eating pasta and pizza and drinking wine more than once per day.  It was highly probable I gained weight.

I get asked about periods a lot.  Didn't they change?  More frequent?  Painful?  Sporadic?  I have had an IUD for several years so I haven't had a period in years.  It's wonderful but wasn't a clue for this diagnosis.  I have regular PAP smears which are all normal, because a PAP will only help diagnosis cervical cancer, not ovarian or uterine. 

There was something that did tip me off!  The mild bloating wasn't really alarming but when I touched my stomach and applied a bit of pressure, it was tender.  Such a subtle symptom but something that set me off to think - this isn't right.

As women, I think we need to listen closer for that gut voice, your soul voice.  That something that says "something isn't right here."  I've been an athlete my entire life so I've always been in touch with my body.  I'm also very self-aware so when something is off, I know.  Even for me - from when I started having mild symptoms to when I first saw a doctor, it was about 2 weeks.  I consider that about as fast as you can see a doctor for such non-specific, mild symptoms. 

I wish I could share a more obvious sign or symptom with you.  But that's just the nature of the ovarian cancer beast.  The signs and symptoms aren't obvious.  Their sneaky and subtle and this is why we loose so many brave and strong women.  The answer?  More research + more funding = better detection methods = better survival.

amydee [pharmd]