What are your pronouns?
How do you describe yourself? e.g. someone who is currently living with cancer, someone who has experienced breast cancer, breast cancer survivor, someone currently in remission from breast cancer?
Someone who is currently undergoing treatment for breast cancer (chemotherapy completed and awaiting surgery)
What are some of the most significant sources of support that have helped you during your cancer journey?
Websites and leaflets from organisations such as MacMillan, Breast Cancer Now, Future Dreams info section, Cancer Research UK are good online sources, which I found to be reliable for information about the treatment/chemo side effects etc. There’s so much information online that it can be a bit overwhelming if you google a question. Often there are so many conflicting results that it’s hard to know what the right one is but I found that these websites gave information that was in line with what I was told by my medical team and what I actually experienced. Future Dreams House in King’s Cross is also great if you live in London. It’s a charity that puts on workshops/exercise classes etc. for those who have been touched by breast cancer and it’s really nice to go there (not least because it’s got a cute terrace and is all decked out in pretty furniture) and be around people who understand. I did a nail workshop there and ended up staying for a coffee on the terrace with the other ladies to chat afterwards. Of course, the other huge source of emotional support during all this was from friends and family. I was very touched by the thoughtful messages, gifts and offers to travel to see me even just for a couple of hours. I was also extremely lucky that my parents live nearby so I could go and stay with them after treatments and my mum came with me to all of my appointments.
Has your experience with breast cancer changed your perspective on self-care and overall well-being?
If saying “no” is considered a form of self-care, then yes. In the past I would often agree to what others wanted to do to please them, even if it wasn’t ideal for me. Having cancer forced me to say no to certain things that I couldn’t do because of new restrictions imposed by the chemotherapy or because I was too fatigued. In the past I would have always been someone to push myself to do something even if I was tired or didn’t really feel like it but I am now vowing to stop ignoring my own needs and take them into consideration more. I have also started meditating every morning. I began doing the living with cancer course on Headspace towards the beginning of my diagnosis and found it really helpful to clear my mind and focus on small joys in the present rather than letting my mind run away with potential challenges of the future. Now I like to do a short meditation every morning before getting out of bed.
How has your experience with breast cancer changed your relationship with your body?
I am still yet to have surgery so I’m sure the answer to this could change even more with time but at the moment I would say the biggest change that breast cancer has triggered in my relationship with my body is realising just how important it is to take note and act when something has changed or doesn’t feel right. I used to be someone who would always assume “I’m sure it will be fine”, even waiting 4 months before going to the GP for my breast lump in the first place, which seems scary and reckless now. I knew in my heart that something was wrong and I should have acted sooner. I also got a painful shoulder during the first week after treatment and, with renewed resolution to listen to my body, called the triage line at the hospital just in case and it turned out to be a blood clot around my portacath. The doctor told me that it was rare for that to happen so soon and he said, “well done for catching it, it shows how well you know your body”.
If you're comfortable discussing it, what are some things you wish others understood about the cancer experience that they might not be aware of? (I personally found it difficult that immediately after treatment and good news from scans, people assumed I would instantaneously bounce back to full mental and physical health.)
I had 16 sessions of chemo and something that I found difficult was that somewhere around the middle section of treatment, when the initial shock for everyone else is over and the flowers people bought you when they found out have died, it feels particularly bleak. You’re not near the end yet so it’s difficult to tell yourself it’s nearly over but you’re still living out the daily reality of going through chemo and it feels like everyone else has forgotten about it and gone back to getting on with their lives. Of course, at this point everyone is indeed getting on with their lives, as they should be! However, I think it’s easy for people to hear that you’re ok and not bedridden every day and forget that although they are over the initial shock, you are still living out the experience every day, both mentally and physically. I remember speaking to someone else my age who had had breast cancer two years prior before I started chemo and she said a couple of times that the cancer experience “wasn’t how they portrayed it in films” and this really annoyed her. At the time I wondered exactly what she meant but now I think I get it. In films people with cancer are portrayed as bald, bed ridden and unable to do anything and whilst yes, I did spend a lot of time lying on the sofa watching Netflix, I certainly wasn’t confined to a hospital bed unable to move for 20 weeks. I think this portrayal of cancer on TV can be confusing and upsetting, especially for people who have just been diagnosed with cancer. The reality is that you can still do things that you enjoy and socialise but you might just need some medication to manage your side effects and a few naps to do so. It requires more effort and can’t be done in the same carefree, flippant way of days gone by but it’s still possible.
Can you share any strategies or advice for maintaining a positive outlook or resilience during your cancer treatment and recovery?
I found it helpful to do home workouts on the Body by Ciara app whilst I was undergoing treatment. Don’t get me wrong there were a couple of months after diagnosis when workouts were the last thing on my mind/ I couldn’t workout due to some procedures I had had but once I was able to again, I found that they were a good way to anchor the day and left me feeling like I had accomplished something. I was also told by my oncologist to try and keep up with my usual workout routine as it would help with recovery so I was keen to do anything I could in order to help make the recovery easier. It wasn’t easy and I remember crying after the first one I did after starting chemo because I was so relieved that I could do it at all (give or take a couple of exercises). I used to do these workouts during lockdown too and I always find that Ciara and the other trainers are just as good for the mind as they are for the body, often giving encouragement and rays of positivity that mean you can’t help but feel that your mood has been boosted afterwards (@bodybyciaraapp @ciaralondon if you want to check them out). During lockdown I also started writing in a gratitude journal, which I continued to do so throughout my treatment. Some days were definitely more difficult than others to think of things to be grateful for but I think it’s helpful to force your mind to think of any small thing that happened during that day to bring you joy. I also kept a more detailed journal, which I wrote in every day. This was actually extremely helpful going through the treatment cycles because I was able to read back how I had felt a week earlier, a month earlier etc. etc. and compare it to how I was feeling now. It highlighted days where I always felt particularly down, which in some cases I realised was because I was on a comedown from the steroids they give you alongside your chemo treatment. This helped me to come to expect the low moods on certain days and know what was causing it each time. The journaling also helped to highlight how far I had come at any given time and the resilience I had already shown to get to where I was, which was a good self-motivation tool.
What has been the most useful thing you have learned during your breast cancer journey?
Probably a new sense of perspective. I have had a lot of time to evaluate my values, what’s important to me and whether the life I was living was in line with that. I think it’s so easy to keep doing things or behaving in a certain way because it’s what you’re used to doing. I came to see it as a positive thing that I had a unique chance to take every element of my life and ask myself “if I was starting this again now, would I choose the same thing?”... I have also learnt how lucky I am to have many people I have in my life who care about me. I have always had a huge appreciation for my friends but I was overwhelmed with the support and kindness I received and it was a real silver lining in what could otherwise have been a very dark time.
Have you discovered anything about yourself that you didn't know before your diagnosis?
I think this is something that is maybe still in the process of happening. Although I have finished my chemotherapy there is still a long way to go until I’m back to living “normal life". Up until now I feel like I have been concentrating on just getting through it and I feel like as I start to regain some semblance of normality in my life, that is where I will really notice the changes. My resilience has certainly been put to the test, if I had to point out one thing, but it will be interesting to see what else I come to find as time goes on as I know for sure that I will be getting to know a new version of myself in the future.
What do you wish people asked you or didn’t ask you about your breast cancer journey?
Personally I liked it when people asked me questions about it. It felt like people were taking an interest rather than leaving me to cope with everything on my own and talking about it helped me with processing it all too. It felt like they were there with me and whilst nobody who hasn’t been through it could really 100% understand, it was a comfort to feel like they were at least trying and I wasn't alone. A few of my friends admitted that they weren’t sure what the “right” way to approach me was the first time they saw me after diagnosis and asked whether it was ok to ask questions, which I think is a good way to approach the situation if you are ever in the position of my friends and aren’t sure what to say, as everyone is different. The main thing that I didn’t appreciate was being told that I “just have to be positive”. Someone said that to me a few days after diagnosis when I was crying and it infuriated me because on the whole I did feel positive. I wasn’t crying because I was feeling pessimistic and thought I was going to die, I was crying because I was grieving for a past self that I knew would never exist in the same way anymore. So no, it’s not a case of “being positive”, there are many complex emotions at play that aren’t related to positivity or negativity and it’s important to allow someone to go through and process each of those emotions.
What is something you think folks who know and love someone with cancer should do to support them best?
I would say, if you are considering doing a kind thing and you aren’t sure whether to do it or not, just do it. I had a couple of instances where people said they weren’t sure if they should message as they didn’t want to overwhelm me but the truth was that sweet messages from people checking in, at any point in the process, were what got me through. Just a little message to indicate “I’m thinking of you”, “you’re not alone”, “you’ve not been forgotten”, “I haven’t forgotten what you’re going through" is enough because the days drag on and feel a lot slower when you’re just sitting with your thoughts rather than being out there living your life... Any small gesture you can make, be it a kind message, a gift or offering to drop by to see them for an hour to show them that you haven’t forgotten about them or what they’re going through and that they aren’t alone.