I have entered the 'blog-o-sphere'… Actually, I’m not sure if that’s a word. Anyway, my name is Toni and I am a Clinical Psychologist who has been working with cancer patients and their families for a while now. This blog is going to be about ways that you can help to manage the cancer world, and having to be a part of it. The idea is that this won’t target any particular group i.e. offspring, patients, sibs, instead the goal is for it to be a bit helpful to everybody!
So, I thought I would start our blog journey at any cancer psychologist’s favourite word….Uncertainty. It’s our favourite, not because it is a good word, but just because it comes up all of the time, and it’s the little word that causes most people distress about the cancer journey. Uncertainty is the idea that you have no certain knowledge or plan about what is happening, and cancer is very good at making your entire life like this. The other names that Uncertainty gets called include limbo, lost, time-warp etc.
Most people who I have met who have cancer (or know someone with cancer), will talk about this idea of uncertainty. Often it is in the context of not knowing when things might happen, knowing what the outcome of the disease will be, or knowing what a certain treatment may do. As people, we are hardwired to like ‘black and white’ type decisions, like yes or no, or that something will definitely happen, or it definitely won’t! Think about when you have plans to catch up on the weekend, and then at the last minute you find out it’s not happening. You get a bit disappointed, upset, or maybe even you were expecting that it wouldn’t happen (because this particular friend always cancels things). Either way, your brain will allow you to process this and makes rules about what can happen next like “Its ok, the weather is a bit miserable for going out anyway, I will just hang out at home” or “I’m not surprised, she always cancels. No worries, I had planned for that”. Usually, any uncertainty we have is short lived in our worlds, like waiting for the results of an exam, or a job interview, and then when you get the answer you can make some decisions.
With cancer (or most illnesses) the uncertainty looks a bit different. There isn’t an easy solution to most of the uncertainty that the cancer diagnosis or treatment brings. Often it takes many weeks to find out if a treatment is working, or to get an appointment to see a specialist. When treatment is over, there is always uncertainty about whether the cancer might come back. Also, there are many variables for most of the cancer uncertainty, so it’s harder for your brain to make sense of all of the options.
So, I can hear you all saying, "Well that’s great, now tell me how to do something with it."
You can’t fix uncertainty. Its unfortunately part of having to live with the cancer world. There are some things that you can do though, which might make it a bit more manageable.
1. Accept that the uncertainty is a part of your world (at least for the time being). Most people find that trying to put as much control into your world as you can will help, that way the uncertainty feels less like it is in control. Try planning things in advance when you can, take ownership over things (like the things that you have to do, making a schedule for yourself including setting aside time to have some ‘timeout’).
2. Make time to think about the things that you are worried about. Taking some time to process things will help. One of the things which can be helpful is to actually think through the uncertainty, like…… Mum got really sick from the last chemo, is that what is going to happen with this one as well? If you don’t do anything with this thought it can be very powerful. It can make you feel scared, fearful, angry, and many other things. So if you leave that thought alone in your head, it can just go around and around, and build on the fear and worry. Instead, if you try and make sense of the uncertainty (almost like trying to solve a problem) Like…. Ok, so what happens if mum does get sick from this chemo?
- We will go to the doctors and they will give her some extra medicine to make her feel better.
- She ended up in hospital last time for a couple of days needing a drip. That made her better. I am sure if she is sick again, they will do that.
- We will all look after her and help out around the house so she has less to do.
- I can ask her doctor before hand what the effects might be of this particular chemo so I can be ready if she does start getting sick. It doesn’t matter whether these things actually happen or not, its just helpful for your brain to have a plan.
3. Take time to have some fun and ‘non cancer time”. Hang out with your friends, chill, dance badly in the lounge room to Rhianna, listen to some uber angry music and yell away, exercise, play on facebook. If you spend all of your time thinking about the cancer uncertainty, it will feel much less manageable.
So….that’s my cliff notes version of dealing with uncertainty. I would be happy to have any suggestions about what kind of blogs you might like to see in the future, or any specific questions that you have!
Until then... T :)