The first two posts of this series told you mainly about the facts of this journey – how I found out, what it is, what the treatment plan is, etc. This post is the first to focus on the mental side of it. I’m going to try to be as honest as I can about the experience, which will probably be difficult at times. Thankfully, I keep a journal so I’ll be able to refer back to it to talk about exactly how I was feeling at different times so far.

WARNING:

A large part of this post talks about food issues which may be triggering for some. Please do not continue to read if you think that may be the case for you.

Combatting the “Is it just me?” feeling

While I know several people who have or have had cancer, none of them have ever talked about any serious mental struggles they have had with it. The focus has always been on any physical side effects. Any allusion to mental struggles has been minimal, if even mentioned at all.

The result is that in the last almost three months there have been many moments when I have wondered why I am having such a challenging time mentally when nobody else seems to have experienced serious mental struggles with their own experiences. I mean, that’s great, if that’s the case. But it sure has left me feeling considerably “less than” because it has been a serious challenge for me.

I know…before you say it: You should never, ever, ever compare your experience with something to somebody else’s experience with it. The logical side of my brain knows that’s true. It doesn’t stop the thought from popping up every now and then, though.

One thing I’ve done to quiet that mental monster and its ravings is to do some reading. I have a BUNCH of books and booklets I’ve taken from the cancer centre and I’ve done some online research. Unanimously, from what I’ve been reading, having different mental health challenges when dealing with cancer (or any serious health problem, or other life challenge) is very normal. Therefore: Shut yer gob, mental monster!

So what gives? Why do I feel like I’m the only one I know who is struggling? In all likelihood it’s that, as with mental health challenges in general, it’s just not talked about. People – the people experiencing those challenges and the people around them – may just be too uncomfortable talking about it. Just like physical symptoms, mental health symptoms vary greatly from person to person.

And, as we all know, even though there have been great strides in the past few years with normalizing mental health issues, there is still a long ways to go. It can, for many people, still be awkward and uncomfortable. We can talk about the fatigue or skin issues from radiation, but talk about what’s happening in our heads? Nah ah. Not gonna do it.

If that’s indeed the case, I’m trying to do my part to rip down that curtain of embarrassment and shame and shine a big ol’ flashlight on it. I’m talking about my mental health struggles all over the place. Almost any time someone asks how I’m doing or if there are any side effects to treatment, I let them know both the physical and mental challenges I am having. I don’t do it (hopefully!) in a “Woe is me…life is so hard…please pity me” way. (That’s a short cut to getting people to stop asking if there ever was one!)

Rather, I try to do it in a way that just makes it more normal – both for myself (so I don’t feel I have to hide that bit in a closet) and for the people around me, as well as my medical team. “My skin is starting to get a bit itchy in the radiation area, I’m tired really easily, and my emotions are all over the place.” I don’t spend the whole conversation dwelling on it. We talk about it and then move on to other things – it is just built in as a normal part of conversation because it is, now, a normal part of my life.

The mental part of this has actually been the most challenging part for me. Physically, I occasionally have some slight discomfort from the tumour and there have been some increasing, but still mild (so far) side effects from treatment. That might not always be the case, but currently, I am grateful that this is where I am physically. But from day one my head has been done in. I can’t do things I used to be able to do practically in my sleep. I can’t trust myself emotionally.

So I am making sure that I talk about it so that, hopefully, if someone else really struggles mentally and emotionally during their journey, they don’t wonder why nobody else seems to also have had similar such struggles.

If that is you, let me state unequivocally right now: You are not alone. It’s normal.

It’s an awful diagnosis. It spins your world. Or for many of us it does, anyway. Yes, there are probably some people for whom it’s just another day at the doctor’s and, beyond having more medical appointments in their calendar than usual, it’s no big deal for them. And that’s great. It truly is. But for many of us, that’s not the case and that is perfectly normal, too. (A quick Google search will provide you with many legitimate sources to support that.) There is no one-size-fits-all way that we each react to and deal with our cancer diagnoses.

My initial reaction

To say that the diagnosis was and is a huge head trip for me is an understatement. From the very first moment, lying on the colonoscopy table looking at the screen as the doctor paused the camera on the tumour and told me that it was cancer, my head has not been the same and my relationship with food hasn’t been the same.

For the rest of that first day (a Friday) when I found out I felt numb and that was probably a good thing. I knew I needed to pay attention to what the doctor was saying and not being overwhelmed by emotions allowed me to do that. As I said in my journal four hours after I found out, “I was a weird mix of groggy and trying to stay calm so I could listen to what he said.” I also knew myself well enough to correctly predict right after, “But this weekend will be rough.”

I also knew that I needed to let my close circle know. That was only possible because I wasn’t fully feeling it yet. I sent out a few emails to my brothers and sisters-in-law as well as a few very close friends. It was still all very matter of fact in my head in that regard. But just two days later, on the Sunday, I wrote: “I’m a mess. I’m glad I told everybody on Friday while I was numb. I don’t think otherwise anybody but Carol would know. It would be too hard now.”

My unexpected challenge with food

My friend Carol, who had taken me to the colonoscopy, and I had planned on going out to lunch after the treatment for some real food after several days of prepping for the procedure. I wasn’t really up to eating, but I also now had blood work to do because of the cancer. I didn’t want to do it – I just wanted to go home to bed. But Carol encouraged me that it would be best to get it done now and that I should really eat something before the blood work.

So off we went, but when the food came, I couldn’t eat it. I had a bit of the soup and then maybe two or three small bites of potato. It was one of my favourite meals (roast beef) and I still couldn’t get much into me. It likely made no difference for the blood work, but it was at least something.

The rest of the day after she dropped me off, I tried to eat more, but couldn’t. Thankfully, because I had heard that some folks have a little difficulty going back to regular food right after a colonoscopy, I had bought some different fruit and veggie smoothies and made myself drink small amounts of those so that I could at least get some nutrition in.

As I kept trying to make myself eat solid foods, I discovered a whole new issue: Though challenging, I could make myself put the food in my mouth, but I could not make myself swallow it. I would chew it for a little bit, trying to make myself swallow it and then spit it out. Out of a whole meal, I could only make myself swallow maybe three or four bites, but that was it – the rest I spat out or didn’t even get it to my mouth. I knew that was a problem and that I could be heading down a very dangerous path, but I just couldn’t do it.

I couldn’t look at solid food and want to eat it. I mentally associated it with the cancer. It was all associated with the digestive process. The food was going in through the mouth and would eventually come out by the tumour. I couldn’t handle that thought.

Before you say it, I also knew that the fruit/veggie smoothies would also come out the same way, but there was no time involved with them. Once I got the bottle to my mouth, I could quickly make myself drink a few swigs before my brain could stop me. But the whole chewing process…nope. Couldn’t get past that.

I even tried some of my favourite junk foods – not for nutritional value, obviously, but to hopefully get me past this block that was set up. It didn’t help. Nothing had any flavour. I might as well have been chewing on cardboard for all the enticement any of it offered. I still had that alarm going off in my head, warning me that this was a dangerous path to be going down. People don’t just chew their food and spit it out on a regular basis. If I wasn’t careful, I knew this could really develop into a very bad illness on its own.

On the Tuesday following the diagnosis, I wrote: “On another note…the eating isn’t getting better. Not solids. I’m fine with juices & smoothies, but am still mentally struggling with solids. I bought some Mary Brown’s yesterday & 2/3 of it, at least, went in the trash. I thought the flavour might inspire some pleasure for it, but nope. I mostly chewed & spat it out – forcing myself to at least swallow some of the chicken. It’s very bizarre.”

Success!

I didn’t give up trying to make myself do it, though. Sometimes I had more success than others. The thing that got me out of it was going out for a quick lunch with a friend of mine. Since the pandemic we had gotten into the habit of occasionally going out for a fast food lunch during the day (we both live in the same building). It allowed us to see and speak with a live human being and also safely get out of the house. We still do it occasionally. I thought, “OK…if I am eating with another person there, I’m not going to be able to spit it out.”

And I was right. I only ordered a couple of the smallest items on the menu and I ate them. I was ecstatic! I hadn’t told her why I had wanted to have lunch that particular day, though. I mean, you don’t just randomly go around saying to people, “Hey I chew my food and spit it out…you wanna come to lunch?” Hardly an appetizing thought. Plus, mental health monsters generally want us to keep our mental health issues under wraps and in the dark. That way we are less likely to address them. And they continue to make us unwell.

After that meal, it was just a matter of reacclimating my system to regular solid food. Thankfully, that whole ordeal only lasted five days before I was out of that habit. But it was rough and scary. It gave me a slight peek into a world where a lot of people with eating disorders live. Even though it was just a very short period of time, it has definitely given me a greater empathy for people with that health issue and how easy it is to develop a seriously unhealthy relationship with food.

And now?

I still don’t eat the same as before – the full enjoyment of food hasn’t come back. But I do eat and I don’t have any chewing/swallowing issues. I know the lack of enjoyment is related to other mental struggles I am going through right now (to be addressed in my next post) and as I work through those things, the joy will likely (hopefully) come back. It’s just not a priority for me at this point. It’s a symptom and not a root problem and focusing on the latter will help with the former.

The whole food episode was not one that I ever expected to encounter so it was quite a surprise to be faced with it. I am very grateful that I was able to recognize the alarms going off in my head during that period of time and that I was able to get myself out of it quickly enough before it really took root.

It’s a great example, too, of how we genuinely don’t know how we are going to react to something until we are faced with it. More often than not, at best we could say how we hope we might react, but until we are faced with something, we really don’t know for sure.

This whole experience has been a great lesson in that, for that matter. It would be nice had I been able to learn those lessons in less life-threatening ways, but there we have it! In any event, I am grateful to see the lessons and the learning and not just the challenges.

On that note, I will close for today with a Dolly Parton quote that seems rather à propos:

“The way I see it, if you want the rainbow, you gotta put up with the rain.”

Resources

Below are some resources on the topics mentioned above that might be helpful to you or someone you love. There are many more available. Please also consider searching resources that are closer to you and specific to your individual needs. The important thing is that you know you don’t have to struggle alone – there is help.

• Coping with changes – Canadian Cancer Society
• Cancer and Mental Health – Mental Health America
• General Information – National Eating Disorder Information Centre

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