This module is all about taking care of your mental and physical health.
Topics covered:
1. Taking care of yourself
2. Getting help
3. Dealing with treatment side-effects
4. Dealing with difficult people and unwanted advice
Video transcript:
This is the 10th module in this course – the cancer course that I decided to put together for cancer patients and cancer carers and anyone affected by cancer. This course is all about facts and details and reality. It’s not about awareness or anything like that. I don’t see a lot of value in that kind of thing.
This topic is about physical and mental health when dealing with cancer. On one level, we could say a really good way to stay physically and mentally healthy, is to avoid the big three of cancer, which is surgery, radiotherapy and chemotherapy. But that’s not reality really for any of us. We have to deal with cancer itself, the impact of cancer itself and the impact of treatment. Whether the treatment goes well or not, has a lot of impact on us.
I’m going to talk about physical health first, because physical health is really foundational for mental health. I discovered that quite early on. I was obviously devastated to be given a terminal diagnosis at the age of 36. I suffered a lot mentally, but quite quickly I worked out, at least part of it was things like exhaustion, e.g. physical exhaustion from having had a huge surgery and being on a brutal chemo cocktail that I really struggled with, all the time spent in and out of hospital and that kind of thing. It’s just physically exhausting, not sleeping much at all, and therefore just not being in any fit state to deal with day-to-day life.
I kept thinking, the mentals issues such as depression, stress and trauma, quite a lot of that was a consequence of physical stuff. Physical stuff tends to be much easier to fix directly.
It’s easier to get yourself physically well, even when dealing with chemo or the aftermath of surgery.
I’m going to go over some of the stuff I’ve learned about physical health. The first thing is it’s really important to keep some kind of diary or journal of what’s happening and what you’re doing. This is something that you might want a family member to help with as well, because if you’re struggling to eat, I found writing down everything that I was eating helps. That’s something I’ve still continued for six and a half years. When you’re struggling to get food down and to keep food down, that really helps. Noting things like your weight weekly is really important, because ~ 1/2 of people with cancer at some point, are going to get some level of something called cancer cachexia, which is weight loss – either cancer-induced or cancer-related or particularly chemotherapy-induced. It can be difficult to spot because you might be losing weight because you’re not eating, but that’s not the same as cancer cachexia. You might be eating but not keeping food down, and that’s very natural that you would lose weight.
But cancer cachexia is when you’re eating, you’re getting the calories, but you’re losing weight and you’re losing muscle. It’s something that is wholly recognized. Everyone in the medical world knows it’s a big issue for cancer patients, but it’s really not well monitored. So you have to watch out for it and get family members to watch out for as well.
The diary or journal is very useful to make sure that you’re eating enough and well enough and regularly enough, and that you’re staying active. It’s very easy to get lost, particularly during chemo, especially in my situation where we’re still on chemo for life. It’s very easy for days to pass without moving much, and then particularly males tend to lose muscle very quickly when we’re inactive. So this is stuff you really have to watch out for.
On a much more positive note, by logging what you’re doing, you can make some progress and you can see some progress, being able to get a bit fitter, healthier and stronger over time, even during heavy treatment. What gets recorded gets improved. That’s a foundational thing.
It really makes sense if you can afford it to see a sports physiotherapist. I do not have a high opinion of non-sports physiotherapists, because it is just so different. The physiotherapist that you get to see at a hospital, they have very low expectations. I’ve just found sports physiotherapists are just another level and are really good physiotherapists. You’ll see them maybe every few weeks if you can afford it, and they’ll give you stuff to do. They’ll do a bit of stuff with you, maybe some kind of sports massage.
If you’ve done radiotherapy, you might have your arms behind your head for 20-30 minutes at a time, every day for a few weeks doing radiotherapy. I did proton beam therapy, which I had for 8 weeks, 5 times a day. Because of where the target ams by my head, which got very uncomfortable very quickly. Physiotherapy helped with that so much. When I later did another type of radiotherapy, I knew I was going to be in an uncomfortable position, and I went to see a sports physiotherapist. They gave me a bunch of exercises to make that position much more comfortable, and it was so different and good.
A good sports physiotherapist will give you functional tests. Functional fitness is Fitness that relates to practical movements you might do. In daily life, we might pick up something from the floor, and reach with it up above our head, to put it in a cupboard. Or you might grab a small child and twist and pass them to the partner. These kinds of functional movements, when exported to physiotherapy, really focus on that kind of thing, and they’re very results driven. I’ve just found it’s absolutely life-changing and helped me deal with lots of stuff.
Good sports physiotherapists will ask you to video them doing the exercises that you then have to do at home. So it’s really handy to make sure you’ve got a phone or camera with you charged up. They’ll typically give you 7-8 exercises, and say “Do these every day or every other day and come back and see me in a few weeks”.
It’s really important with physical fitness, to concentrate on strength first. That’s the first thing that goes with inactivity, and it’s quite frightening. As a cancer patient particularly, if you’ve had a big surgery or you’re on chemo, it’s quite disorientating and shocking when you suddenly can’t do things that were quite easy a short time before. Particularly if you’re older, falling over is really quite serious and unpleasant. So you want to avoid that, and getting some strength in your body makes a big difference.
There are loads of YouTube videos on functional fitness stuff. Typically you’ll use exercise bands (sometimes called Therabands) – this stretchy stuff. Another thing I found massively helpful is ankle weights. So walk up and down the hill, if you’re going to do surgery it makes a really big difference preparing for the surgery. I was actually kind of surprised by this talking to surgeons, but even if you’re booked in for surgery in 3 weeks time, then 3 weeks of exercise still makes a big difference, or whatever you can manage. I’d have thought surgeons would say, “You’ve got 3 weeks, don’t don’t bother.” But no, it’s quite significant.
I had a big surgery a year ago, which was abdominal surgery. This was reconnecting my intestines.Being male, we have quite a narrow pelvis, so there’s not a lot of room for poking around in there. Our organs are covered in protective fat ,and losing a bit of weight is going to shrink some of that fat. That gives the surgeon a lot more room. and Because my surgery was a difficult and dangerous one, because my reconnection point for the intestines was really low, in my case any extra space is really beneficial. So I did exercise, diet and lost some weight.
I wish that I had known that for fat inside your body, that responds much better to exercise than to diet. I was diligently dieting and doing some exercise, but mainly eating less. That still helped, but it would have been much better to just really focus on exercise.
Doctors generally don’t believe patients can make a big difference to their health by exercise and diet. I think doctors are generally right on that, but we have to be the exception. So if 98% of people are unable to exercise regularly during chemo, we have to be the 2% who yeah find a way. I found that alternating between strength and mobility really helps. One day I do strength stuff, the next day I do mobility stuff, because chemo and surgery and radiotherapy tends to tighten up our body a lot more often in odd positions.
Or with chemo, you might be stuck in bed a lot. Obviously after surgery you’re not in a great way. So really working on mobility and things like balance as well.
If you experience a lot of chemo, you’re familiar with peripheral nerve damage so in your arms and in your legs, and those long nerves, you get nerve damage from chemo which is very very unpleasant. You lose balance, you drop stuff. That’s quite distressing and you can mitigate that to some extent through exercise.
Where you’re moving your arms to the full range of motion seems to help with peripheral nerve damage a little bit. With injury-induced nerve damage, it helps. Your nerves in fact start to like heal after 24 hours. With chemotherapy-induced nerve damage, it seems to be less effective but does make a difference.
Another big thing I found with the physical health, is that just trying to maintain your physical health is not enough and is not motivating. Instead, focusing on increasing your ability is really helpful. Being able to do more and enjoy more of your life, I found that far more effective and far more motivating than trying to just maintain my current level.
A big thing to work on is grip strength, because that’s one of the first things that goes. I know I keep saying it’s distressing, but I’ve found it particularly distressing and quite easy to fix. You can do things like get thick rubber bands, or you can buy proper bands for your fingers where you put the band around and force your hand open. You can get those hand grip things. These are okay, but it’s not very close to a real gripping action. So balls that you squeeze are better. Again, sports physiotherapists will recommend a lot of that kind of stuff.
Another thing they might recommend if you’ve got aches and pains and nerve damage, are things like a foam roller, or a hard-ish ball like a lacrosse ball is ideal, where you can use that to relax some of those tight muscles.
Obviously, foundational to health is our diet. Now this shouldn’t be controversial, but actually the medical evidence about diet and for cancer patients is actually very compelling, that how much you eat is a lot more important than what you eat. I know it’s a very personal topic about what’s healthy and what’s not healthy. But the really big thing is to keep eating.
In digestive cancers for example, it seems to make a massive difference, to the extent that the top GI surgeon in Japan observed that he had never lost a patient to bowel cancer during a period of weight gain. It was such a big deal that if you can and he wasn’t talking about his weight gain. It wasn’t like he was getting really huge to about patient’s weight gain.
I’ve talked to a lot of chemo nurses who have looked after patients for many years. Their basic advice to cancer patients is that you can manage as much as you can manage when you can manage. Obviously there is some talk about real food, not super processed food. Although if that’s all you can manage, then it’s better than nothing.
One of the things that cancer patients often use is a nutritional drink called Ensure. This is a commercial product, but is available in many public health care systems as well. This year, it was maybe a big factor in me staying alive after my first big surgery. There are 3 versions of it. There’s a milkshake version in little plastic bottles, there’s a version in cans, and there’s a version of the powder. The one in bottles is considerably better. The powder one is really nasty. When you’re on chemo, or in fact just after surgery, you often have taste changes and odd stuff going on in your mouth. So it’s really important with food, to try a selection of stuff and try not to be upset if some of your favorite foods certainly taste revolting. That changes over time. That ebbs and flows as well. So something that you can’t manage today, maybe you can manage it in a few days time .But stick at it and keep your notes.
The evidence for eating as a cancer patient is really quite strong, it’s not a gray area. It’s quite strong that the really key thing is to keep eating and keep exercising, and try not to lose muscle mass.
For at least for the big three treatments of surgery, chemo and radiotherapy, the biggest deciding factor of outcome, is what people call “Performance Status”, which is just your physical wellness. Patients who are physically quite well, tend to get better results from those treatments. I’ve particularly found that a lot with immunotherapy, and talking to my immunotherapist a lot about this. A big factor he notices is that patients who come who are physically well, they get a better result. Of course there’s correlation and causation there as well. Iit’s not a simple thing. Patients with more disease burden are suffering with more immunosuppression for example, so it is a complex thing. But it’s definitely a very clear thing.
Two of the very obvious things, but as cancer patients we have compromised immune systems. So it makes sense to get extra vaccines that are available to you. I would have never considered getting a flu vaccine, but I now get it every year and it’s amazing not getting the flu. I’m in Japan where we have very narrow flu strains, so the vaccine is particularly effective. I know in some countries there’s a lot more variety in the vaccines, and not so effective. A weird related thing: after the first two big surgeries I had for cancer, I got post-surgical pneumonia. The third time I went to the do the surgery, I just said, “Would it be worth having a pneumonia vaccine?”. The doctors were umming and arring as it’s not covered by public insurance in Japan, but it might be useful. So I had it, and of course no pneumonia and that made recovery much more pleasant. Because when I did liver surgery and got pneumonia, I got a collapsed lung as well, which is not nice and would have been completely well not completely avoidable but the pneumonia vaccine is uh 60 effective so yeah it was really worth having um
I’m gonna briefly go over some mental health stuff that I have observed. As I said, physical health seems to make a big difference, particularly with things like decision-making. As cancer patients, we often have to make very serious decisions. If you’re in poor physical health, that’s difficult. But even then, you should try and make those decisions when you’re feeling your best. There’s this handy acronym HALT, that says we should try not to make decisions when we are hungry, angry, lonely or tired. As a cancer patient, you are often these 4 things at once. It’s just not a good time to make decisions. It’s always good to think about stuff, write stuff down, come back to it and make the decision when you’re in a better frame of mind to do so.
Some of the challenges we have as cancer patients, take a big mental toll on us. One of the things I found out is wasting time and the feeling that I’m wasting time. We have great public health in Japan, but it often involves a lot of waiting in hospital, waiting 30 minutes or an hour to see someone. I found that really stressful and frustrating. So now I’m always prepared to make the best use of time. One of the things I found, is to spend that time studying something that you’re interested in, or in my case studying cancer, but studying something I just find really useful.
It feels very different afterwards. If you were sitting waiting an hour in hospital waiting to see the surgeon to talk about your surgery next month, if you spent an hour actually studying something useful or something that you’re personally interested in, you can feel quite good afterwards. Whereas if you just sat there frustrated or playing games on your phone or fitting time, you feel a bit too and frustrated.
Another thing I found to use that time wel, if you’ve got phone with you, is writing nice emails to people that you care about, and checking in on other people. I found that really helps.
Another big thing we deal with a lot is depression, particularly when we’re tired and particularly when our situation is very grim, which mine was. One could say, I found a very obvious way out of that is just to help other people. I’ve found that so powerful. I try to ignore how I’m feeling, and take some action to help other people, and things just seem better. As cancer patients we know what other cancer patients need, so it’s quite easy and there’s a lot of stuff you can do online. I spend quite a bit of time in various online groups, just helping out people, answering questions when people are asking questions about different treatments, or maybe someone’s new to cancer.
I also try and help out carers a lot, because caring for people with cancer is really tough. So I try to help with that as well. Explain to the carers what their family member or friend or whatever is going through, and what kind of things are helpful.
Fundraising is really good. I personally think it’s not so good to fundraise for cancer charities, because it’s much better to help fundraise for patients directly, particularly for kids. There are lots of ways that you can, e.g. posting stuff online, sharing people’s fundraisers, that kind of thing.
I personally do not think it’s helpful to fundraise for cancer charities because a lot of that money goes on things that have been proven over time not to be effective, like awareness raising, or salaries. It’s much better to help people directly.
Another huge thing you can do to deal with your depression, is give other people your time and attention, particularly other cancer patients. Cancer can be very lonely and very hard to deal with. Just giving other patients your time and attention, I find very powerful and very helpful to me.
Another obvious thing is creating stuff, instead of consuming it. If you are interested in taking photos and sharing them online or writing stuff etc, it is so much more rewarding than consuming things. Interestingly, when you have cancer, a lot of people think you must have a lot of time on your hands, and say “I’ll get you some books” or “ You must watch this box set of DVDs”. You spend quite a lot of time trying to explain to people that you’re extremely busy, because you have cancer to deal with, hospital appointments, finding new treatments, raising money for your own treatment etc.
I’ve seen lots of people talk about bucket lists – things that they want to do with whatever time they have remaining. I personally have never observed anything good coming of this at all. I have found personally and I’ve noticed that we think doing big things is going to make really powerful memories. But my experience and what I’ve observed is quite the opposite. They’re just spending time with people you care about, especially making stuff together, doing things together, creating things together is far more significant than going to the Grand Canyon etc. It’s easy for me to say because I’ve been to the Grand Canyon, but still, spending good time with people you care about is much better than having a checklist of things you want to do.I think of course that’s very personal.
Another big thing we have to deal with, is managing our own expectations, managing expectations of people around us, dealing with false hope. I think a big part of that is we have to recognize our own bias and the biases in other people. Humans, unfortunately when we hear big claims about something, instead of ignoring it completely which is the sensible thing to do, what our brain tends to do is cut it down to size. So we hear about some miracle cure, and we think “Of course that is unlikely to be a miracle cure, however it probably helps a bit”, even when there’s no evidence for this at all. So recognizing that and ignoring it, is really important, so that we’re not full of false hope.
Remembering that most people are wrong about most stuff. Most people don’t understand anything that they hear or read or are exposed to, and then they share that with us and say “stop all those stupid cancer Treatments, you just need a green smoothie once a day and you’ll be fine.” So getting good at politely rejecting that is an important life skill and dealing with unwanted advice.
So that is a roller coaster ride through physical and mental health as a cancer patient. I hope it was of use to you. This is a topic that I’m going to revisit in upcoming sections of this course. Although this is the 10th of the 10 topics, I’ll be doing a couple more sessions on each topic and revisiting them and going over things in more detail. I hope that was useful to you.