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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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!

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.

 

Cancer/life update: struggling at the halfway point

This Friday (March 2, 2018) I will be having my sixth chemotherapy treatment, which means that I will be halfway through my original treatment plan.  My second chemo cycle (one cycle is two treatments) was difficult.  The neuropathy in my hands became less uncomfortable due to the lowering of my Vinblastine dosage, but those two treatments just made me feel sicker: more nausea, more fatigue, more gastrointestinal upset, heart palpitations and anxiety.  I was worried that I was going to feel progressively worse after every treatment.

Fortunately, the first treatment of my third cycle wasn’t as bad.  I was able to leave my house on the Monday after, which is pretty rare for me, to pick up our new puppy, Frankie.  Since then, symptom-wise, I’ve had one of the best periods between treatments since I started chemo in December.  During my last visit with my oncologist, I even received the news that if my next PET scan (now scheduled for April 7) doesn’t show any remaining active disease, two drugs will be removed from my protocol: Bleomycin and the steroid that goes along with it.  This would be fantastic, since Bleomycin has the nastiest long term side effects and the steroid I am given to prevent me from having an allergic reaction to Bleomycin raises my blood sugar and is the most likely cause of my heart palpitations post-treatment.

With all this great news, I should be feeling awesome, especially since I have a new puppy in the house, but I am struggling: mostly with Frankie.

My mother and I haven’t had a puppy for 15 years and, needless to say, we had completely forgotten how difficult it is to raise one.  It doesn’t help that we were a little spoiled with our last dog, Daisy.  For example, she was at least partially crate trained before she came home with us, she had excellent bladder control, and, being a terrier, she was smart and easy to train.  We kinda took it for granted that we knew what we were doing.  Frankie had only ever been in an activity pen and had only been outside a few times before we brought her home.  She had accidents in her crate nearly every night because she had no idea it was her bed and we figured we would toss her in there and she would just understand how it worked, exactly the same way Daisy had.

We are definitely doing the best that we can and the strategies that we are now using to crate train and house train are working, but it’s been very stressful for me.  I keep worrying that I’m going to make mistakes that will give her bad behavioural habits and every time she has an accident inside, I feel as though I’ve failed her somehow.  The guilt is also difficult.  Whenever you get frustrated at your puppy, you feel terribly guilty about it, because we all feel like we need to love and adore them all the time.

I also have other worries about the logistics of managing everything during chemo weekends, since my mother’s mobility issues are worsening recently.  I won’t go into any detail about this, but it’s made sleeping difficult: I am so worried about chemo, my mother, and Frankie that I haven’t been sleeping well.  Over the past 2 nights, I’ve probably only gotten about 7 hours, which isn’t great for a person who is undergoing chemotherapy.  I’ve been laying awake in bed worrying and feeling anxious.

Sleep deprivation + worries about raising a puppy + cancer and chemo = stressful combination.  Up until now, I have managed the stress and emotional difficulties of cancer and chemotherapy quite well, but the addition of everything else has made me hit a wall — it’s all catching up with me at once.  I’ve started reading an ebook that I think will help me to process the puppy stress, but I think it’s going to take me awhile to get used to everything and get over the guilt.

Update: I wrote this on Monday, February 26.  It’s now Tuesday the 27 and I had a great sleep last night.  I’m feeling a bit better about things, but we have a long way to go.

 

A Disappointing Workshop

Last week I attended a Look Good, Feel Better (LGFB) workshop at the BC Cancer Agency’s Fraser Valley centre (at Surrey Memorial Hospital). During our initial teaching session, the chemotherapy pharmacist at the hospital where I am having treatment mentioned to me that I should check out the LGFB program because she had found that many female patients had found it helpful. Based on a cursory look at the LGFB website, I immediately decided to register for one of their workshops, because it looked to me like it would be a session about self confidence and self care.

Rather than a presentation and discussion about how to look after ourselves physically during cancer treatment, we received a makeup and skincare lesson that just gave all the normal steps for putting on a full face of makeup: cleanse, tone, moisturize, the whole deal. The presenter read from cards that were provided by the LGFB organization and didn’t provide much further information. A few tips were given here and there, but for the most part, it was all just read from a presentation packet. There was a short discussion about wig options and care toward the end, but I would say it was only about 25% of the presentation. The most useful information for me came from other participants who had experience with wearing wigs.

I want it to make it clear that I’m not lashing out at the use of makeup. I think makeup is great and I admire those who are skilled at using it, but it’s never been my thing. I have painfully reactive skin and have to be very careful with what I put on my face. I have psoriasis, rosacea, and keratosis pilaris. I told my dermatologist awhile back that I used coconut oil as my body moisturizer and also that I was trying to go cruelty free with my beauty products and he scowled at me and gave me a list of suggested products that were basically all just Cetaphil and CeraVe. Whenever beauty YouTubers I watch talk about how gentle products are and how great they are at calming their skin, I try them and they literally burn my face. I can’t use any scented products because chances are they will aggravate my psoriasis or give me a huge rash.

Basically, I struggle with my skin. When I try new products, I try them one at a time so that I know which product is causing me to flare up. During the workshop, we were given a donated kit of products (which is huge and probably has about $300 worth of free products in it) and we were expected to do the skincare and makeup steps as the presenter read the LGFB instructions.

When I explained that I wouldn’t be able to use the products due to my skin issues, the presenter seemed quite frustrated. When other members of the group decided to forego a step or two here and there, she also seemed quite frustrated. I’m not sure why the presenter was so prickly about us not following along exactly as she expected but our group seemed to listen actively and attentively. I probably should have mentioned that the neuropathy in my hands has had such a negative effect on my manual dexterity that I couldn’t do a full face of makeup now if I tried, but I was having a rough day with it and didn’t feel comfortable disclosing this to the whole group.

The free products were an extremely kind gesture and I did get a lot of high quality skincare loot for free. Each kit contained the products necessary to do a full four-step skincare routine and a full face of makeup. The products were a good mix of drugstore and department store brands, such as Clinique, Vichy, MAC and Cover Girl. I have tried out a few of the products at home and I’m happy to have some of them, especially since I don’t have any money coming in at the moment. Not having to buy new cleanser and serum for a time will be a huge help to my already tight budget.

I guess the best way to frame my disappointment in the workshop, other than the fact that I thought the presenter was unnecessarily prickly, was that the only solution offered to the shittiness of cancer treatment was makeup. It just felt a little superficial and outdated to me. The presenter often used the phrase “feel like yourself again” but I would argue that women undergoing cancer treatment don’t need to feel like ourselves again, we need to get to know or learn how to cope with our new self. Or really, several new selves: the self of chemotherapy, of radiation and of survivorship. Sure, I might get a wig to help me feel more confident and comfortable in public, but what I really need is some tips on how to deal with looking at myself in the mirror and seeing a bald head.

This could all be a bit much to expect, but I think that LGFB could do a little better. Maybe I was stuck with a presenter that wasn’t great, but I think maybe starting with a knowledgeable discussion about the realities of how cancer changes the way you look over reading basic makeup steps from a booklet might be a better way to go.

Chemotherapy and hair loss

When I was first diagnosed with cancer at the end of last year, I didn’t think that hair loss would be much of a problem for me.  I’d make some hats, get a wig and everything would be fine.  I was wrong.  It’s fucking awful.

I should probably start by saying that not all chemotherapy protocols cause hair loss.  Loads of folks are able to go through chemotherapy with their hair fully intact, but based on my experience so far, most people have at least some hair thinning.  This is essentially the result of how chemotherapy drugs attack cells.  Cancer cells multiply and grow quickly, much faster than normal cells which is what makes them so dangerous — they begin to take over healthy, normal tissue in your body.  Chemotherapy drugs, then, are designed to kill the cells in your body with the fastest growth rates.  Of the normal cells in your body, your hair and nail cells are the ones that grow the fastest, thus chemotherapy tends to cause problems with your nails and hair.

As I write this, it’s January 28th.  I had to shave my head today.

I cried the whole time and so did my mother.  I cut my hair short in December and it hasn’t grown much since then.  She cut the excess with scissors and then used clippers to shave the rest.  When I looked at myself in the mirror, I cried harder.  I suppose I should be grateful — the shape of my head isn’t terrible or weird, but it will take me some time to get used to it.

I had originally thought that my hair might just thin significantly, because it didn’t fall out very quickly.  When I wanted to learn about ABVD chemotherapy, I read a lot of blogs and forum posts, thinking that it would be useful to me to read personal experiences.  Most folks said that their hair fell out in clumps.  Mine just fell out in wisps, a few hairs here and there.  I thought my hair was looking quite good until I went to a workshop at the BC Cancer agency last week, which I’ve started writing about for Friday’s blog.  I saw my hair at a few different angles and realized that if my hair was mussed up or disturbed at all, you could see bald patches.

I figured that would be the best time to give in and let my hair go and so I bought clippers and my mum and I took care of it this morning.  I think the toughest part for me will be getting used to having to wear something on my head.  I’m definitely not comfortable enough with how I look to go out without wearing something, but I feel awkward and strange and too warm whenever I wear a hat.  I was planning on making some chemo caps using old t-shirts, but the fabric my t-shirts are made of is a little too stretchy.  I think a trip to the thrift store is in order — we’ll see how that works out.

Tomorrow I will make an appointment for a wig consultation.  I know that it will take some time to get used to a wig, but hopefully it will give me the confidence to go out and be comfortable with myself.  I’ll probably write a bit about the process of choosing the wig and my experience wearing one in a few weeks.  Hopefully by then I’ll be able to look at myself in the mirror without recoiling.

Chemotherapy side effects and invisible disability

I don’t feel like writing today. In fact, I’ve been planning my schedule so that I don’t need to write on the weekends at all (as I am writing this, it’s Saturday, January 13th). I’ve been trying my best to write one week ahead of schedule, but everything this week has been a struggle and so here I sit on Saturday completing work that should have been finished several days ago.

I have neuropathy in my hands. This is a common chemotherapy side effect that I, and I think probably most people, knew nothing about prior to being diagnosed with cancer. My fingertips, in particular, are numb and tingly and every time I push a key on my keyboard, it feels like they’re asleep. My hands themselves are also very weak — I have almost no grip strength and have trouble hanging on to most objects for any length of time. If I spend too much time typing or holding any objects, the muscles in my arms start to ache and I’m at risk of dropping what I’m holding.

This has diminished my quality of life considerably. I was hoping to indulge in a lot of my hobbies during my time away from work and that is impossible for me now. I can’t knit, I can’t do any crafts, and I can’t colour. Writing in my journals has also become difficult and I usually have to cut myself short because of the discomfort. I haven’t tried playing a lot of controller-based video games, but I am going to assume that I won’t be able to play them for long sessions as using my 3DS has been okay only in short bursts.

The neuropathy is also limiting where and how I can travel. Earlier this week I decided to go on an outing downtown to shop at a Japanese dollar store that sells Daiso products. I brought a takeaway coffee on the train with me and realized after one stop that I wouldn’t be able to hold on to the coffee for the whole trip downtown. I decided to get off the train and run another errand closer to home first, mostly so that I could throw the coffee away.

On my way home, I had another realization: what happens if I can’t get a seat on the train? If I can’t hang on to my coffee for more than a few minutes, how am I going to keep myself steady hanging onto a post while standing on the train? I had happened to sit in a seat reserved for the elderly and people with disabilities. At every station I nervously glanced around to see if anyone who would need my seat had entered the car. I didn’t know how I would manage if I had to give up my seat, but I also didn’t think I would be able to explain why I needed a seat so desperately. Right now, I look fine. My hair has been thinning a little bit, but not so much that anyone would notice and I have no other visual side effects. Everything that is wrong with me is completely invisible.

I won’t be taking public transit for now. In some respects this is probably for the best. During chemotherapy you are extremely vulnerable to infections and getting sick can delay your treatment significantly. We all know that public transit is a great place to catch a cold or the flu, so it’s probably a good idea to avoid it, but it’s shitty to feel like my treatment is limiting my life to this extent. My boyfriend and I had planned to go out for a fancy dinner downtown at a restaurant, where an old friend of mine is the executive chef, to celebrate my birthday when he’s next in town. Those plans are on hold indefinitely.

Unfortunately, I’m not sure if there’s anything that can be done about the neuropathy. I will be talking with my oncologist before my next treatment about lowering my dosage of the drug in my protocol that causes neuropathy (vinblastine), but I’m not sure how this may affect my treatment over the long term. I know that the neuropathy will likely go away within a few months of my completing treatment, but I am concerned that it may continue long after the fact, particularly since it seems to be quite severe for me.

I could say more, but to be honest, it’s painful for me to keep typing. Please keep in mind that my capacity to chat online and respond to comments is diminished at the moment. I’m trying to keep up with things as best I can and I appreciate your patience!