How has your relationship with yourself changed?

“It is in the process of becoming a lot more positive and almost worry free, beforehand I used to stress about the smallest things, now I am looking at the bigger picture and not sweating the small stuff as much and definitely enjoying socialising and getting out more. Beforehand I also was very selfish and that is changing, I have been made aware of flaws within me and I see this as an opportunity to work on those flaws.”

“It takes time to accept the ‘new’ you physically… but after treatment I am slowly regaining my prior fitness levels and seeing the old me come back SLOWLY.”

“I am so aware of my physical body now. I know when my calcium is low or if I’ve missed a dose of something because I can *feel* it. I’ve wanted improvement to my eating habits and my exercise habits, or lack thereof, for so long but I feel like this awareness of my body has driven me more than anything else has before.”

“As someone who has always struggled with body issues, it felt unbearable to have physically changed so much in such a short period of time. I spent too much time berating myself about how I looked during treatment, and even more so after. There are days where I still stand in the mirror and berate my body for everything that it isn’t rather than celebrating what it is. I still struggle with the shallowness of my own self-worth but I know it has evolved. I can now realise that if it wasn’t for this experience, I would still have an unhealthy relationship with my body.”

“Most of the time I appreciate my body for fighting this disease, and now carrying me through each day. However, sometimes I can feel angry that I no longer look the way I did; am no longer as physically strong as I once was and that sexual experiences aren’t the same. It is hard not to compare yourself to friends. I try to practice self love but sometimes this can be really hard.”

“Treatment finished 2 months ago and I don’t think I have yet fully come to understand how it changed my relationship with myself and my body yet. There was a long time after surgery and during treatment where I couldn’t have cared less how I looked as I just wanted to feel better. There was a long time too, where all I wanted was to look after my body (exercise, use skincare, heal my scars, stop being injected with poison). But I just had to wait. Now that treatment is over I have all the time to take care of my body, I just had to get through the part where I had no control and realise a time would come where I get it all back. I’ve come to realise how strong I actually am, mentally but also physically to get through what I did, and I really appreciate my body for enduring what it did so well.”

How have your intimate relationships or experiences been affected?

“I don’t feel that my relationship has changed, really. I still feel the same connection as I always have with my partner.”

“I feel emotionally closer with my partner; sexually we are further apart. Recovering from surgery, being thrust into early menopause and having a temporary ileostomy are all large contributing factors. We are starting to overcome this together, open communication with your partner is key. Individually, I am linking in with additional services in the area of sexual health- it took some time for my team to suggest this referral.”

“A timely question, my long term girlfriend broke up with me after treatment. As far as I am aware it was not because of the cancer. There were other factors. However I was not feeling confident within my own body after my final surgery and was self-conscious and had close to no confidence. That has meant I have not had sex since. I am also not wanting to as I don’t particularly like anyone and honestly there is a part of me that is worried of being judged. The challenges are gaining confidence within myself in terms of my body and in terms of who I am as a person and my ethics and values. I guess I have blurred my mistakes into my cancer experience and see it as a chance to start again.”

“My relationship with my partner changed a lot. By default he became basically my primary caretaker during this time. A role he assumed without any question or even much discussion, I think he felt he didn’t have a choice, and not in a way in which he was forced but more that he couldn’t imagine it any other way, which on its own, I am incredibly grateful for. Since treatment it feels like both of us have become so much more thankful for each other, at least I know that’s true for me. Now that we can properly enjoy life again and do what we want, it feels all the more special. He is my hero now and I will never forget what he did for me and what he sacrificed to get me through this time, so that is a huge change in our relationship from my end.”

“I definitely seek more validation and comfort from people than I used to. I don’t know if it’s because I’m scared or scared to be alone but there is a loneliness that has stayed for me. Perhaps the restlessness has always been there, perhaps the two years in remission has felt ordinary and I uninspiring for not doing something more than being 24. But as my friends remind me: that is my job. To be 24, to make mistakes, sleep with the wrong people, fall in love with the worst ones, be selfish, have fun and to make the most of the now because the present is never to be repeated- we must live in it. I’m trying to be more patient and understanding with myself since this all happened. It’s not easy but even on the worst days, there is always some goodness and that’s what I’ve learned to hold onto.”

“My intimate relationship changed massively during treatment and then again afterwards. I read lots of stuff telling me how my intimate and sexual life would might change but I kind of dismissed this information before I realised how relevant it was. Feeling as sick as I did, I didn’t want to have much of a sex life at all. I didn’t really like how I looked and definitely didn’t feel good, so the thought of either me or my partner touching me was so far from what I wanted. During my break weeks from chemo my boyfriend and I had sex maybe once, but I think it was less because we wanted to and more because we thought we needed to try.

Emotionally though, my relationship with my boyfriend was the most nurturing it’s ever been, and that more than made up for a lack of connection physically during this period. I think it was good for us to put things like cuddling and just holding hands on as high a pedestal as we normally would sex. These things were instrumental in our intimacy during chemo. It was also challenging to accept that if there ever did become a moment where I felt well enough to have sex it didn’t mean my partner was ready, nor that my body would be. Also that if both of those things aligned, accepting that sex had to be different was huge too. It had to be a lot more calculated and controlled. We had to get lube (as the drugs affected my natural lubricant) which we had to talk about during sex, and my energy levels were so affected as well, every aspect of the experience had to be talked through, which took a few goes for me to come to terms with. Since we have started returning to a normal sex life I still hold things like cuddling and holding hands in a higher regard than I did before, which is super nice. Also just talking about being excited for a time when we could return to having sex was important. It reminded both of us that we did still want each other, and helped me picture the returning to of normal life.”

What surprised you? 

“[That] I feel ok with my scar (26cm vertically across my abdomen). When I am being critical about myself it is never about my scar.”

”I was surprised at how quickly and dramatically my body changed when not doing any physical activity. And how mentally affected I was by my physical changes.”

“How accepting my partner has been throughout the whole thing, but then again it doesn’t surprise me.”

“How you can listen to your body and how quickly it can improve with hard work and determination, the hard bit for me has been listening to my body and knowing when it wants a break. I’ve also been surprised that there are people out there that will judge you on the way you look. Then there are people who look up to you and seek strength from you.”

“My recklessness. I’ve always been one to throw caution to the wind when it comes to sex though before, I was scared whenever I did so- now I’m not.”

“I got my period after radio treatment which is NOT FUN. I have implanon and getting my period was completely unexpected and no one even told me that it might affect me in that way- even though we did have a discussion about when my last period was and what birth control I was using. I was not prepared at all for it. It makes total sense because my hormones are being affected by the way my body has changed but I just wish I’d had more warning.”

“I was surprised by how much my sex drive was actually affected. And also how I didn’t feel much sadness about missing my sexual relationship during this time, as I knew it would return (thanks mostly to my partner being so encouraging).”

What advice do you have for others?

“It isn’t always easy, but be kind to yourself.”

“Be proud of your scars both on the outside and in (I’m still trying to be proud of the inwards ones) [because] they represent the fact you’ve gone through an ordeal and made it through the other end. Also no doubt your body will go through changes if you have surgery. Use it as an opportunity to start fresh and become stronger than you were before. It’s not permanent, and if people judge you or stare at you they really aren’t worth your time, they should be admiring your strength and resilience instead of the fact you don’t have hair or [are] not as muscly as others.”

“My advice would be celebrate the little things! While everything starts to become normal all at the same time, don’t forget how hard some stuff was during treatment. Patting yourself on the back when you can do small things like get through a meal without thinking about how hard it is, returning to normal bowel functions, going up that set of stairs without getting puffed, things like this are all absolutely worth quietly celebrating with yourself. Also patience patience patience. There’s no telling how long it will take your body to start looking and behaving normally. Same goes for sex life and relationships. Don’t worry yourself if things seem not to be going back to how they were, chances are they will, it will just take some time.”

“As hard as it is (and I probably didn’t have the guts to ask my oncologist), ask to talk to a nurse about sexual health and advice on the matter. I felt more comfortable talking to [my nurse] than one of the doctors on the matter.”

“You can never go back to the person you once were. All that’s left to do it figure how who the person you are now. Take your time, even if taking it seems unbearable. When you reach the point where you’re ready to dip your toes [back] in the sexual pool- dive. Experiment and play and ask for what you want. Sex is the only thing that’s free from distraction- it requires presence and touch and pleasure- why deny yourself any of it?”