It has been a 14 month rollercoaster from brain surgery, to radiotherapy, to chemotherapy. The physical side of cancer has been tough for my wife Tara. But, that hasn’t been a patch on the mental side. While feeling nauseous sucks, she can take a pill and it goes away. While feeling tired is hard, she can sleep when she needs to. Unfortunately there is no such quick fix for the psychological pains that come wrapped up in a battle with this disease. It’s not something we were really prepared for. Despite mental health being discussed more openly these days, you hear a lot less about the psychological ‘side effects’ of a cancer diagnosis than the physical ones. This is an especially hard thing for Tara to talk about. It has taken a long time to work up the courage to put this out there. A lot of people we know think everything has been great. That she has breezed through it. If you saw her down the street you might not even know she has cancer. She looks amazing and is often smiling. But that doesn’t mean everything is sunshine and sugar-free lollipops on the inside. To put the issue more into the spotlight we thought it was worth writing about what Tara and I have been struggling with. We hope that by talking about it, it will help others going through a similar situation build up the courage to talk with their own friends and get the help they need. I’ve also included which tactics have helped us fix things and which ones have not. Spoiler alert: Tara telling herself just to “harden the fuck up” did not work very well.
The two main areas of concern for Tara can roughly be put into two categories — Guilt and Isolation. In a weird way they somewhat feed each other, which I’ll explain in more detail shortly. First, it’s worth noting that there are some more common mental problems associated with cancer that haven’t been such an issue. The first is losing your hair. Tara was lucky enough to keep hers, so was spared any kind of stress in that area. For her it probably wouldn’t have been the appearance aspect. More having everyone ‘feeling sorry for you’ when they see you. Think about how annoying it is when you have a broken arm and people are always asking you how you did it. Well, if you’ve got a bald head covered in a bandana (and are not in a biker gang), then its a cue for people to ask how you’re going with chemotherapy, or cross the street so they don’t have to talk to you about it at all. We’re told from friends that it does get tired after a while. Most cancer patients would much prefer to talk about normal things, than focus on their worries. Next are the ‘why me’ and ‘I don’t want to die’ existential crises. These are somewhat there, but since Tara was first diagnosed way back in 2010, we’ve had a lot longer time to confront these feelings. They bubble away beneath the surface, but we’ve realised that asking ‘why me’ doesn’t help anything, and that since we’re all going to die, actually feeling it in a very visceral way has made both of us excited to be living life to the fullest every day we can. There’s also the fact that Tara’s prognosis is for years of life left, rather than months or weeks. So, the mortality side isn’t as acute as it might be. I don’t want to play down these things, since for some people they are huge. However, for us they aren’t part of a day-to-day mind rodeo.
Guilt most certainly is part of Tara’s day-to-day. Every time she can’t get up in the night to comfort our crying baby, or pick up our 3 year old when he has hurt himself because she’s too weak to lift him, she feels guilt at being a ‘bad mum’. Whenever she vomits in the middle of the night she feels guilt at causing me stress and further interrupting my already sporadic sleep. She feels guilty that she can’t work and help earn money for the family. She feels guilt that I have to take time off to look after her and the kids. She feels guilt that I have to worry that I may be a single dad one day. She feels guilt at putting her friends through the worry of having a friend with cancer. She feels guilt at constantly having to ask her mum to come around to help out. She even feels guilt at feeling guilty, because rationally she knows that none of this is her fault. But, she can’t help how she feels. This all manifests in some serious depression. Tara was trying to hide it initially. She’d wait until I fell asleep to start crying. Or until I got up at 5.30am to take our baby for a walk, so he wouldn’t wake her or our 3 year old up. Tara would wake up anyway and cry until I got home. I noticed something was a bit off. She was pretty cranky during the day a lot of the time, which if you know her is nothing like she normally is. But, I chalked it up to tough times and didn’t push the issue — at first.
The second issue of isolation is another big one for Tara. It all began just after surgery. She was in hospital alone a lot of the time, while I was looking after the kids with her mum. When I was there, I’d talk to the doctors about how she was going. Tara would ask what was said, and I’d say “don’t worry about it, I’ve got it under control, you just rest, you’re doing well.” I was trying to protect her from stressing about details. She could barely even speak after surgery. So she didn’t even have the words to be able to let me know she didn’t like what I was doing. This all made her feel like she was in her own bubble. There is also the fact that she’s going through something fairly heavy emotionally that not many truly people understand. That in itself is isolating. Finally, and probably biggest of all, she was missing out on regular life — going out with friends, going to the park with the kids, all of the stuff we often take for granted. As things progressed and she recovered from surgery, Tara started to feel like people had forgotten about her, not inviting her to things anymore. Or, that they didn’t want her to come because she was a drag, not fun to be around, hard work because of the special diet she was on. Basically feeling like an outcast. I need to emphasise that this is how she felt. Her friends have been nothing short of amazing through all of this. While there were a few times when we weren’t invited to things, that was because our friends knew we couldn’t make it, or didn’t think we’d want to come. If Tara found out about these events after the fact, she would be devastated. Not only because she felt like she was losing a sense of closeness with her friends, but because she felt guilty that the boys and I were missing out on things because of her. The cycle of guilt and isolation just kept spinning around. After one mini meltdown sparked by missing a few events in a row, I encouraged Tara to let a couple of her close friends know how she was feeling. I didn’t know about the guilt yet. This was all about the isolation. Tara really didn’t want to tell her friends about it, because she already felt annoying, draining on their energy. They’re all busy mums with their own shit to deal with (literally when it comes to nappies), and they all have troubles of their own. But, after a bit firmer poking, saying I’d message them if she didn’t, Tara let a couple of really close friends know what was happening. I have to stress that it was only a couple of super close friends in the town we live in. She didn’t tell her besties in other parts of the country. She didn’t tell the girls who were the bridesmaids at her wedding. She didn’t even tell her mum, who is probably her closest friend of all. She didn’t want to burden them with something they couldn’t help with. The response from the people she did tell was great. They rallied around her and started over-inviting us to stuff. They made time to catch up for cups of tea, to gossip about stuff that didn’t matter. They generally did what good friends do — they supported her.
While the isolation issue was starting to be tended to, the guilt wasn’t really going anywhere. In fact, as Tara’s treatment dragged on with delays, and she got weaker and weaker, unable to help more and more around the house, the guilt got worse. To make all of this even harder, Tara’s anti-seizure medication, which she has to take, can be known to cause depression. We don’t know if it has played a part, but it does mess with the mind just thinking about it. Being so physically weak it also became difficult, if not impossible, for Tara to do yoga or go surfing. These are the two things she has always done to help with her physical and mental health. Not having them as a release really created a big hole. She started to get really short with me and her friends. We all saw it, but didn’t want to say anything, because she was already dealing with so much. Her speech was being effected by the chemo, so she was already having trouble communicating as clearly as she normally would. If she snapped at us from time to time, then that was understandable, right? Tara herself used the language problem to hide behind in letting me know what was happening as well. Finding the right words was too hard. So she just kept putting it off.
Things came to a head when we weren’t invited to a kids party of a good friend one weekend. This wasn’t one of the few people Tara had told about her isolation, but someone she still counted as close. That night Tara was in a terrible mood. I finally had to say something about how she’d been speaking to me, the kids and her friends lately. She broke down. After plenty of tears we had a long overdue talk about how she was feeling and why. She told me that the isolation was still an issue, because she felt like her wider group of friends were still avoiding her. She told me about the guilt she’d been feeling. She told me how she’d been crying herself to sleep. How she’d been crying when she woke up after I’d snuck out each morning to give her some ‘rest’. Getting this off of her chest and letting me know was a huge relief for her. We’ve never hidden anything from each other in the past, so she had even been feeling guilty about not being totally honest with me. I also promised that I would be honest with her if she started acting like a dragon lady again.
After this, Tara opened up to a (slightly) wider circle of friends and told them about her isolation. She still hasn’t told her friends in other parts of Australia. This is likely the first they’re hearing of it (sorry guys!). But, being able to discuss it in more depth with her friends in town really, really helped. Being able to talk freely with me about her guilt also helped. We also organised for Tara to go and see a counsellor once a week. This has helped, but Tara thinks she gets more out of speaking with her friends. We’ve also made a concerted effort to be more understanding of each other. It’s bloody hard for everyone involved going through cancer treatment. If I’m shitty with her, she’ll let me know as nicely as she can and I’ll back off. Vice versa. Nothing is perfect, but it really does make a difference to stop and think about what you’re saying or feeling, before things escalate into something major.
So, if anyone else is going through something like this, my biggest piece of advice is be honest and open with your friends and family. Don’t think you’re protecting someone by hiding how you’re feeling. If someone hurts your feelings for any reason, let them know why. Don’t sulk, or let it fester because they ‘should already understand’. Talk everything out, even if it gets a little annoying from time to time. It will be a lot less annoying than daily depression, I promise.
The other thing we did was made an effort to get Tara back to work, even while chemo was going on. Doing a few days here and there really made a difference. Getting out in the world and feeling like ‘Tara’ again, combined with seeing her ‘own’ money come into the bank account provides a big boost of positivity. That sense of community and contribution has turned guilt into gratitude. She says that it’s almost as if she had been in jail for a year and has just been released. The feeling of liberation is that strong.
Now that we are doing all of this, Tara is feeling much better. It doesn’t hurt that she finally finished chemo today as well. Whoop whoop! There is a huge light at the end of the tunnel that we’ll be able to get back to some kind of ‘normal’ life soon. She’ll be able to start feeling physically better, doing exercise, working, spending time with the kids — all the things she loves to do. It’s exciting to see what the rest of 2017 and beyond will bring. If we feel like having a party to celebrate, we promise we’ll let you know. Even if we know you can’t make it.