Things you shouldn’t do for your friend who has cancer

As a follow-up to last week’s post about things you should do for your friend or loved one who has cancer, I wanted to spend some time discussing a few things that it might be best to avoid.  Of course, everyone is different and your mileage with these tips may vary, but I would say that these are the issues that I’ve had the most trouble with.  It’s important to note that my intention is not to shame or scold, I’m just looking to provide you with some best practices that might help you avoid some awkward moments (or landmines).

1. Try to avoid asking invasive questions.

Even if your friend is comfortable speaking publicly about their health, it’s important to remember that you have no right to information about your friend’s body: their body is their business.  Asking questions about your friend’s ability to perform sexually or whether they’ve lost their pubic hair is incredibly rude and will likely make them feel uncomfortable.  Of course, there are people out there who won’t mind sharing this kind of information; however, in my opinion it’s best to give your friend the opportunity to make that choice for themselves.

When you have any serious medical issues, you give up a lot of your privacy.  When I was in the hospital, for example, I had to answer hundreds of invasive medical questions in front of an entire ward of strangers (and their visitors).  As a result, I’ve become both desensitized to sharing things about myself and also even more guarded about my privacy than I was before I became ill.  I don’t like it when people ask me invasive questions, because I think it’s rude, but if I’m comfortable I don’t mind providing information — particularly if I think it can be helpful.  Let your loved one share what they want to share and realize that your curiosity isn’t important.  As I said last time, this isn’t about you.

2. Try to avoid giving unsolicited advice, particularly if you have no firsthand experience.

This one is a little complicated.  In my experience, we tend to interpret a person’s posting about a problem on social media as a request for advice.  The uncomfortable truth, however, is that sometimes that person is only looking to share their experience and they’re not seeking advice at all.  Sometimes interpreting the difference between those two things is difficult, but in general I believe that it’s a good rule of thumb to avoid dispensing advice when you’re dealing with a topic in which you don’t have any personal expertise or experience.

Don’t tell your friend who has cancer what they should or shouldn’t be eating — oncology teams generally tell cancer patients to eat whatever they can stomach.  Don’t tell them what supplements to take or how they should manage their pain or nausea.  If you’re a survivor or you have another loved one who has cancer, feel free to share what may have worked for you or them in the past, but try to do so in a way that is respectful and polite: what worked for you or your other loved one may not work for the person in question and that’s okay.  It is, of course, fine to respond to a request for suggestions, if your loved one happens to make one.

If you do feel like you have some advice to offer in a given situation, I think it’s important to remember that it is your loved one’s right to follow through with your suggestion or not.  If they thank you for the advice, leave it there and know that they have respectfully considered your input.  In the end, your loved one will do what they believe is best for their mental and physical well-being and the rest isn’t really your business.

3. Do not congratulate them on their weight loss or tell them that cancer is a great diet plan.

In our culture right now, we almost universally see weight loss in a positive light and this is a complete fallacy.  People lose weight for all kinds of reasons and many of them can be negative, such as chronic illness, mental health issues or eating disorders (just to name a few).  If you know that your friend or loved one is suffering from any of these issues, it’s probably best to assume that the weight loss isn’t intentional.  Cancer sufferers, for example, often lose significant amounts of weight due to the cancer itself (lymphomas often cause unintended weight loss) and nausea.  The weight loss that they experience is likely a reminder that they are sick and can’t eat or digest food properly and not something to celebrate.

Of course, it’s possible that your loved one won’t find comments about weight loss offensive — they might even make a joke or two about it themselves.  The most important thing to remember in all of this is that everyone is different.  In order to really support your friend who has cancer let them take the lead.  Try to be as gentle as you can and pay attention to the cues that they give you.  I’ve said this a lot over the past few weeks, but it’s never going to be less true: it’s just not about you.

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Media Round-up for 15/04/2018

Accused: Elizabeth Andes

accusedI first listened to Accused last year, not long after the first season was released.  When I found out that the team at the Cincinnati Enquirer was making a second season, I decided to listen to the first season again before continuing on to the new case.

Similar to In the Dark, Accused is a podcast where a team has investigated one particular crime.  Season 1 of Accused examines the 1978 murder of Elizabeth Andes, a 23-year-old Ohio woman who was killed in her apartment just days after graduating from university.  Elizabeth’s boyfriend, Robert Young, almost immediately became the police’s prime suspect.  Young was tried twice for his girlfriend’s murder, both in criminal and civil court, and was found innocent both times.  The case remains open, but it seems as though local law enforcement officials are so dedicated to the idea that Robert Young is guilty, they have not conducted any substantial work on the case in a very long time.

Accused is a terrifying story about how law enforcement officials can get bogged down in pursuing only one suspect.  Personally, this is something about policing that I’ve never been able to understand.  I know that investigations are rarely resolved as tidily as they are in police procedural dramas, but I’ve always believed that detective work should be about keeping an open mind.  In the case of the murder of Elizabeth Andes, however, it seems as though the police focused on one suspect early on and convinced themselves that they were finished.  In this light, law enforcement looks far more like a game of winning and losing than it does like a game of trying to find the truth.

My only real problem with Accused is its audio quality.  There are a lot of interviews with the victim’s friends and others involved in the case and I found that the poor quality of the audio in those interviews can make it difficult to understand what some of the interviewees are saying.  As such, I would recommend listening to Accused on the highest audio quality you can find and with decent headphones rather than trying to listen to it in your car or in a loud environment.

Ugly Delicious

ugly deliciousAs I said in one of my March Media Round-ups, I think that Netflix is knocking it out of the park with documentaries right now and Ugly Delicious is a great addition to their current library.  The series is a discussion about the history and social impact of certain types of popular food such as pizza, dumplings, tacos and fried chicken. Renowned chef David Chang and his good friend, Peter Meehan (a food writer), discuss these foods with friends in the culinary world and travel to various locations to see how those foods are produced.

While I’ve never eaten at any of David Chang’s restaurants, I was familiar with him as a food personality prior to seeing Ugly Delicious.  Chang was the featured chef in the first season of the excellent, Anthony Bourdain narrated, PBS documentary series The Mind of a Chef (which is also available on Netflix) and I’ve been interested in his perspective on food since watching that show.  Ugly Delicious is less a documentary and more a series of conversations about food.  Central to those conversations are two topics of particular interest to me: culinary authenticity and culinary politics.

Chang and his friends ask some important questions about authenticity.  For example, what is required to produce an authentic Neapolitan pizza?  Must it absolutely be made with Marzano tomatoes and Mozzarella di Bufala Campana, which will almost never be fresh if they’re exported internationally?  Or can it be accomplished in Japan with local tomatoes and local mozzarella?  Does authenticity come from using highly specialized ingredients from a particular location, or does authenticity come from making the highest quality product from the highest quality ingredients available nearby?

There are also some phenomenal conversations about sociopolitical aspects of food, examining issues such as the troubled association of African Americans with fried chicken and how Italian pasta is always considered better than Asian dumplings.  These discussions ask a lot of questions that are nearly never asked in food-related programming.  If you are a bit of a foodie or you like cooking shows, please do yourself a favour and check out Ugly Delicious.  It’s awesome.

Things you should do for your friend who has cancer

I’ve come a long way over the past six months.  My journey with having cancer so far has taught me a lot of important lessons and I have learned a great deal about the disease, about myself, and about the people around me.  There is no doubt that I have been fortunate enough to receive a great deal of support from my partner, friends, and family and I am and always will be grateful for that support.  There have been a good number of missteps along the way, however, and I wanted to spend some time over my next two posts discussing the right and wrong ways to go about supporting your loved one who has cancer.

1. Ask them what they need from you and follow through.

Your friend or loved one has cancer and it’s not about you, it’s about them.  The best thing that you can do for anyone who is suffering in some way is to ask them how you can help.  Chances are you’re going to get a response that is remarkably simple and easy for you to accomplish or they won’t really ask you for anything at all, but they will be extraordinarily appreciative.  If they do ask you for something, make sure you follow through and actually do it, it will make your loved one’s day, week, month or even year.

Letting your loved one know that you are ready to take action for them rather than just offer words of support from time to time is remarkably powerful.  In general, I would say that this is a great thing to do if you want to be an ally to any person who belongs to a marginalized group, whether they have a chronic illness or disability or if they are a person of color, fat, queer, non-binary, etc…

2. Listen and absorb.

While it’s pretty well guaranteed that you already know someone who has cancer, has survived cancer, or who has died of cancer, your friend’s treatment plan and side effects will likely be phenomenally different from that other person or people you know.  Unfortunately, because cancer treatment and side effects vary so much from person to person, we tend to oversimplify the whole experience into hair loss, nausea and fatigue.  In reality, your friend has a lot more going on than what what is typically depicted on television and their treatment could be quite different from what you’re used to seeing.

Because of all this, most people who are diagnosed with cancer automatically become educators and if your loved one is explaining something to you, chances are they’ve had to explain it to everyone else they know.  As such, you should pay them the courtesy of listening to what they have to say and absorbing it.  It’s okay to ask questions (as long as they’re not too invasive) and get clarification, but you don’t want to force your friend to repeat themselves too much.  Letting your friend know that you’re really listening and understanding will make them feel loved and supported and also make their lives a lot easier.

3. Make an effort to talk to them and/or hang out with them.

Sometimes cancer treatment can make you feel isolated.  Even if you feel like your friend or loved one is an incredibly positive person who is managing everything like a pro, chances are they’re actually falling apart on a fairly regular basis.  It can be hard to reach out sometimes.  We don’t want to feel like a burden or we feel like our friends have enough to deal with, particularly if they all have children, marriages and full time jobs to manage.  Sometimes the best way to show someone that you support them is to just make a small effort to contact them.  You don’t need to spend hours on the phone with them every day or reschedule your whole life around them: send them a text message from time to time to let them know you’re thinking about them or ask them out for a coffee and chill for an hour.  This is the time that you want to let your friend know that they’re important to you — it will make a significant positive impact on their mental health.

I hope that someone out there might find this a bit helpful.  Next Tuesday I’ll be moving on to discuss a few things you shouldn’t do for your friend who has cancer.  Please look forward to it!

Why an Emergency Fund should be your first financial priority

In the personal finance community there is a lot of debate about emergency funds vs. debt repayment and which you should focus on first if you’re trying to fix your finances.  Some experts say that, if you have debt, then debt repayment should always be your first priority.  For example, in his Baby Steps program, Dave Ramsey has advocated starting with a $1000 emergency fund and then moving on to pay off all of your debt (save for your mortgage) before saving a more substantial emergency fund of 6-9 months of living expenses.  On the other hand, I’ve seen many other sources, such as The Financial Diet, arguing that saving a substantial emergency fund comprised of about 3-6 months of living expenses should come before focusing entirely on debt repayment.

The argument for prioritizing debt repayment is pretty simple: debt is a huge barrier to financial freedom and you should get rid of it as quickly as possible.  This is especially true if a lot of your debt is high interest consumer credit card debt.  I agreed with this philosophy when I first got interested in sorting out my finances because the debt that I had was feeling like a heavy burden: I wanted it off my shoulders immediately.  While paying off my credit card debt I had been saving a small emergency fund and had about $3000 put away.  In a particularly antsy moment, I withdrew $2500 to finish paying off my credit card.  Unfortunately, almost immediately after I did this, I was diagnosed with cancer and needed to take time off work.

This situation left me with no credit card debt, but also with nothing set aside to tide me over while I was off work.  I had some understanding of this risk when I was making the decision, but at the time I thought the risk was minimal at worst.  I was living at home, where most of my major expenses were covered, and I had a stable job that was paying me a decent wage where, if I was careful, I would be able to save up a nice chunk of money quite quickly.

But then, as I mentioned above, I got sick, was hospitalized, and then I was diagnosed with cancer.  If I had been careful, the $3000 that I had saved could have lasted me 6 months or more, since my expenses are now so low.  Due to my emotional spending at the holidays and some unexpected medical expenses, I now have that amount sitting on my credit card and only a little money in the bank.  My government Employment Insurance sickness benefits ran out in early February, so I don’t have any income to fund my current expenses or begin paying off the debts that I have incurred since being diagnosed.

Obviously this is not an ideal situation.  If my long term disability claim is denied, this will turn into a very bad situation and, as such, I have completely reversed my opinion on emergency funds vs. debt repayment: saving an emergency fund should always be your first priority.  Debilitating illnesses or accidents can happen at any time to anyone.  It doesn’t matter if you work out and eat blueberries and kale and meditate every day, they can still happen to you.

I know that saving 3-6 months of living expenses probably seems like a lot of money, especially if you have debt.  It is a lot of money, but it’s good to keep in mind that your day-to-day expenses should be reduced in emergencies.  You’re not looking for 3-6 months of net pay, but 3-6 months of keeping a roof over your head, keeping the lights on and paying your most basic bills.  It’s also important to remember that if you don’t have money set aside for an emergency and you wind up in a situation similar to mine, you’ll likely wind up incurring further debt and risk putting yourself in serious financial jeopardy.  If you don’t have savings and you don’t have a steady paycheque, credit cards might be your only option.

Regardless of what happens with my disability application, my plan for the future is to never wind up in a situation like this again.  Lesson learned.  I can’t wait to get better and get back to work so I can start executing my financial plans and saving the substantial emergency fund that I have envisioned for myself.  In the meantime, I’ll just have to take it all one day at a time and see what happens.

Media Round-up for 08/04/2018

In the Dark

in the darkIn the Dark is a podcast that examines the 1989 abduction and murder of Jacob Wetterling from a small town in Minnesota with a keen focus on mistakes made by local police and an excellent discussion about how the case impacted law enforcement and policing in the United States.  I absolutely loved it and would recommend it to anyone who enjoys true crime podcasts — particularly miniseries that do an in-depth analysis of one case.

Jacob Wetterling’s abduction is a famous case that has had a significant impact on law enforcement in the U.S.  The first U.S. law to institute state sex-offender registries, enacted in 1994, was the Jacob Wetterling Act.  The effects of the Jacob Wetterling Act and its significant updates and amendments are covered in detail in In the Dark.  This was a highlight for me, as I’ve been interested in U.S. sex-offender registries since reading a phenomenal article in the New Yorker about sex crimes committed by minors.  With just my basic knowledge, I believe that these laws have been used by politicians as an easy way to appear tough on crime without considering the consequences for many subsets of offenders whose crimes don’t really match up with the punishments.

In the Dark is also critical of the Jacob Wetterling investigation itself, positing that local and federal law enforcement officers missed a lot basic, local information due to their widening the search parameters for Jacob so quickly.  American Public Media has done a fantastic job of showing that many typical investigation techniques weren’t followed in the Wetterling case, such as interviewing all of the victim’s neighbors and the individuals that resided on the road where Jacob was abducted.  This is used to frame a wider discussion about the varying quality of law enforcement in the United States, which is far more decentralized than I had previously understood.

I didn’t have a great understanding of the structure of law enforcement in the U.S. prior to listening to In the Dark and I feel like I was able to learn a great deal that will be useful to me in the future when checking out other true crime media.  Highly recommended.

Civilization VI

civilization viI like to play Civilization VI on a regular basis and, unfortunately, it drives my boyfriend a little crazy.  Being a huge fan of deep and complex strategy games, he finds the Civilization series (colloquially called Civ) to be a little unsatisfying and often poorly designed, especially when it comes to the combat.  Given my current physical limitations, however, games with simple control schemes that are slow and can be accessed mainly via mousing through menus are the perfect thing for me to play right now.

Civ VI is a weird game.  In some ways it’s a significant improvement from its predecessor, Civilization V, and then it’s also a huge step backward.  The way that builder units work in Civ VI, for example, is amazing and provides players with a lot more options to customize the way their cities and civilizations run.  The civilizations themselves, however, are all a little dull.  In Civ V, there were a lot of civilizations that had interesting quirks, such as the Venetian Empire, where you could establish only one city or China, which was always great for achieving the science win state.  The civilizations available in the base version of Civ VI feel like they don’t really have any specialties.  They might have a few minor bonuses here and there, but mostly they’re a little generic.  I can see why Firaxis made these changes — the civilizations are much better balanced in VI, but removing some of those interesting quirks just makes the game a bit less interesting for me.

The most disappointing aspect of VI, however is what hasn’t changed since V: the payoff for winning a game is still terrible.  When someone achieves a condition for victory, the game suddenly stops, a short cutscene plays and the game abruptly comes to an end.  It feels a bit ridiculous and unsatisfying after you’ve spent upwards of 12 hours building your civilization and battling against your friends or the AI civilizations for everything to just end without any real ceremony.

My boyfriend and I play VI instead of V mainly due to the changes in how units can move around the board and the builder unit changes — it can be difficult to go back to V if you like those upgrades.  I would not, however, recommend that anyone purchase Civilization VI as it is right now.  Civ V is a great value.  If you can catch it on a Steam sale, you can often buy it for less than $20 and it comes with all of the content added to the game after its release.  VI right now is pricey and new civilizations have to be purchased in DLC packs that, in my opinion, aren’t worth their significant cost.

Cancer/Life Update: Neuropathy and disability application woes

It’s been an interesting few weeks and I’m totally behind on writing because I’ve been sick, so I figured I’d scrawl out a quick and dirty update about how I’m doing.  I also just wanted to quickly note that, due to illness and my boyfriend’s visit, I won’t be doing a goal review post for March.  Everything’s been a bit on hold recently and I think there will be more value in evaluating my progress in April.

Chemotherapy fucking sucks.  There really isn’t any nice way of saying it.  Whenever people ask me how I’m doing, I cock my head to one side and say “eeeeeh.”  I’m surviving and I’m putting one foot in front of the other but, to be honest, chemo just gets worse the further into it you get and that’s hard to explain to folks who don’t have first hand experience.  You feel hopeful, because the number of treatments you have left keeps getting smaller, but you also know that you feel a helluva lot worse than you did when you first started and that you’ll feel even more shitty by the time you’re finished.

I’ve had 8 chemotherapy treatments so far.  If all goes well, I have 4 remaining.  I hope that I won’t need any further treatment after those 4 infusions are completed, but even if I finish there, recovery is not going to be quick or easy.  I’ve been thinking more and more about recovery and survivorship recently and I’m more than a little scared.  When I first started chemo, I knew nothing about long term side effects and I thought that, if all went according to plan, I would be back at work soon after finishing treatment.  The neuropathy in my hands and feet says otherwise.

I’ve said before that the neuropathy in my hands has been a bit better.  This is partially due to the fact that my dosage of Vinblastine (the drug that causes the neuropathy) was reduced by 20%, but it’s mostly behaviour modification.  Sometimes I wish I could show folks how my hands feel, but basically my fingers are numb and tingly, like they’re asleep all the time.  This doesn’t bother me when my hands are at rest, but when I touch something, I can feel the tingling.  My grip strength has been greatly reduced and these symptoms worsen the more I use my hands.  If I type too much or work too much doing anything with my hands, the numbness increases and I have pain in my hands, wrists and forearms.  I’ve had to stop knitting, colouring, doing any arts and crafts, and playing most video games.  I can’t really cut tougher foods like steak without help and eating with chopsticks has become difficult.  I’ve also limited myself to cooking very simple dishes, though fortunately my mum has stepped in to take over most of the major meal prep: chopping and peeling for any length of time is nigh impossible.

My feet have also been showing signs of neuropathy, but it’s mostly been showing up as stiffness, pain, and cramping. This has worsened a great deal over the past few weeks and has limited what I can do in terms of physical activity — even just walking seems to make the nerve pain flare up.  I’ve been having these issues to a much lesser degree for some time now, but I would only get random sharp pains and a bit of stiffness — these days it’s far more frequent and consistent.  The pain is difficult to treat because it isn’t consistent and doesn’t respond to basic pain killers, such as Tylenol.  Due to my behaviour modification, I’ve been able to avoid medical cannabis so far, but I think I may have to go in that direction soon.

I don’t have any moral issues with using medical cannabis, but I will have difficulties paying for it.  My short term EI illness disability ended in early February and I have been without income since then.  I do have some support from my parents, but my long term disability application is in bureaucratic limbo hell.  I had been on my company’s benefits plan for just short of 1 year prior to my hospitalization.  As such, it’s standard procedure for my benefits provider to conduct a huge investigation to determine whether my illness was a pre-existing condition.  In order to conduct the investigation, my benefits provider had to request my complete medical history from the provincial government and my family doctor.  The records recently came in from the provincial government, but my family doctor’s office has completely dropped the ball on sending my records to the insurance company and there is a ridiculous dispute going on between the two about the cost of forwarding my records.

Given that I will likely be away from the office for substantially longer than I had previously imagined, the idea that I might not have any income for the majority of that time is extraordinarily stressful.  I have bills that need to be paid, medications that need to be purchased and a life that needs to be maintained.  Waiting around for someone to investigate whether or not you’re trying to scam them by claiming you have cancer is insulting and heartbreaking and not being able to support myself financially makes me feel like I have even less control over my life right now than I actually do.

I’m hoping that all this will be resolved soon, but something tells me that the long term disability application is going to continue to be a huge thorn in my side for quite some time.  I wish I could find more information about how to approach my claims specialist, but I really have no idea whether I should be verbally stomping on her neck or if I should try to be nice so she doesn’t stall my claim even further.  I don’t really want to get a lawyer involved.  If anyone has any experience with this sort of thing, please feel free to contact me privately — I’m interested in hearing your story.

I have a PET scan scheduled for tomorrow, which I hope will give us all a better idea of how my treatment is progressing.  I should have the results by the end of next week and will update when I can.