Living Life On My Cancer Train
It’s been a while, Finding Cyril. Some might find it strange that I am back after such a long time away. But I never went away. As you progress on your cancer journey, what you want to say, and when you want to say it, changes. A cancer journey never stops, rather you enter different phases. After swapping over from the ‘general life train’ to the cancer train on the 9thJune 2016, I realised that once you board, you do never get to permanently disembark. Instead, you are forever evolving and growing in the cancer world as you visit different stations.
Since my last check in, so much has happened. I almost don’t know where to begin.
I became Mrs Samuels (AKA Mrs Samosa). I will officially give my hubby a shout out on here for his ingenious merging of our names and my heritage. Once revealed in his wedding speech, we were never going to be known as anything else.
COVID 19 Station and becoming pug parents
Soon after our wedding, Covid came crashing down around us, driving me into 10 weeks of shielding due to the preventative medication I take. It is a period of time that I don’t really like to think about because of how challenging it was mentally and physically not to venture out the house, even for a walk. I recall a day where it got too much and I eventually had to go for a walk because it felt like my head would explode. I recall walking in open fields with my husband. Breathing in fresh air had never felt so good after feeling like a prisoner in my own home. During COVID, we also became pug parents to the the cutest fluff ball called Stanely!
Between the two lockdowns, I found myself back in hospital for surgery. This surgery was a choice. It was me taking control of my breast cancer risk – something I had wished and waited for ever since I got diagnosed with ovarian cancer. Sometimes I can’t quite believe it actually happened. Whilst it might be hard to believe, I didn’t find this hard to do. Scary to have surgery, sure. Worried about removing my breasts? No. To me this was a way to live each day a little easier. I knew that after the operation, I would wake up knowing that the risk of ever sitting in a chemo chair for breast cancer was minimal. It was not possible due to COVID to have a farewell boobs party but Alex’s wonderful friends Rosie made the amazing cupcakes in the image below to celebrate the surgery. Post surgery, I had moments of sadness when I thought about the breasts I lost; my chest felt alien to me and feelings of regret set in. But it didn’t last long. Quickly, they became part of me. I’m proud of my new breasts. To put it bluntly, they don’t have the chance to kill me like my old ones. Whilst I still have to contend with the ovarian side, I don’t have to do so with my breasts, and that is a huge relief for me. They get checked once a year. And they are starting to feel so much a part of me that I knew recently when one felt different and needed checking. Thankfully, I passed that check with flying colours.
Around this time Alex and I embarked upon our adoption journey with the love and support from family, friends, medical teams, and social worker who is an important part of our lives. It will never be possible to put into words just how much everything she has done, and is continuing to do, means to us. It took 2 1/2 years to become approved adopters and now we are just waiting for the right match. As we say, right child, right time. It’s far from an easy journey, but we wait with anticipation and excitement to meet our future children. We want our adoption story to give other cancer patients hope; both Alex and I had cancer in our 20s and lost our fertility to cancer. I have my up and downs when dealing with the fact that I will never be pregnant. I think that it is important to acknowledge that it still hurts seven years down the line. But I put my focus onto the search for the child that was meant to be part of our beautiful family. When that day comes, I know I will feel all of the things that a woman feels when they are pregnant with a child. I do not want people to treat me differently because I can’t have children. I guess I just want people to know how hard it is to face how cruelly that got taken away from me. I know this is something Alex would echo from the perspective of man who had his fertility taken by cancer. If anybody reading this wants to ask about adoption or about adopting and cancer, we would love to support in anyway we can.
Cancer Scare Stations
Sometimes my train stops suddenly in tunnels mid station. These are not good moments, and you have no idea how long you will be stuck. I had this two summers ago when my cancer markers rose. There was a likely explanation to this, because I had a horrendous cough. I recall sitting by the water in Bourton-on-the-Water when I spoke with my consultant on the phone. It seemed unfair, cruel and unjust. I was left wondering why cancer felt the need to follow me when I was away for a few days with my husband. What followed was a couple of weeks of anxiety, pain, tears and immense mental and physical exhaustion. And it was not just me who felt that. My family endured it too, as they did their best to hold me up. It was exhausting to try and pretend to be okay, but also exhausting to be living in a constant state of fear. I remember like it was yesterday breathing a sigh of relief when I found out it was all okay. I had more of these recently when fainting spells sent me into a continuous state of worry and fear that I ended up experiencing panic attacks. In swooped the Marsden to get me back on the train and to a better station.
It took three extra years. But Mr and Mrs Samosa headed off to Vancouver, Seattle, Alaska and San Diego. A dream come true. A holiday that was worth the wait. This was the furthest I have ever travelled sine my diagnosis. I was really nervous because I had my medications to contend with in a different time zone! But it all went smoothly and proved to me that I can do these things. A cancer diagnosis cannot stop us. It gave us the travel bug and I cannot wait to start ticking off more places on our holiday list.
Bone Density Station
As I entered the menopause world at the age of 27, my consultant keeps a close eye on my bone density. I have DEXA scans to check my bones every two years. As expected, my bone density has continued to decrease. I am now contending with osteopenia in my pelvis and osteoporosis in my back. My consultant swiftly came up with the plan of action to help this. I now take a 6 monthly injection called Denosumab, daily vitamin d and do regular weight bearing exercise. I am determined that the next time I have to get off at a Bone Density station that my bone density would have improved. I think of these issues as my super-power. There are not many women in their early 30s dealing with this, as highlighted by the fact that the nurse who gave me my last injection had to explain my history to the student nurses who were confused why I was so young and having this injection.
I have had the chance to experience some wonderful teacher stations in between regular cancer related ones. I have become Mental Health Lead in school, which has enabled me to complete some interesting training to support my school in this area. This includes senior mental health lead training and youth mental first aid. I am thoroughly enjoying my role and making changes to support the mental health and well-being of pupils and staff. I think this interest comes from the battles I have endured on a personal basis because I have had to and continue to work even harder to maintain positive mental health and well-being. I love my job. I work full time and nothing stops me. I hope to continue progressing in my career. I want people to take to take from this that there is life after cancer, and life whilst living with cancer.
Alumni of the Year 2020
Due to COVID 19, I had to wait longer than planned to receive this amazing award. Nominated by two very dear friends, my old university acknowledged the fundraising and awareness raising that I have done since being diagnosed with cancer. What a day it was! Lunch with the vice chancellor and pro vice chancellor, a chance to address students graduating, and chance to be back in a place where I spent four glorious years. That award gave more drive to continue raising awareness and funds for the Royal Marsden. And I like to say that that award was everybody who has and continues to be part of my Finding Cyril army.
The Finding Cyril Fund is growing
My dad and I have a post 6 monthly scan ritual. We walk home from the Royal Marsden on the Fulham Road and there is a compulsory stop for cake in Maida Vale. My nine-year-old nephew joined us for the most recent of these walks. His bravery and determination has raised nearly £2000 that has been added to the Finding Cyril Fund, taking me closer to my dream of £20,000. This money goes directly to the Gynaecological surgical fund. To say my dad and I were bursting with pride that day is an understatement. This formidable little boy took to social media and explained each step of the way why people should share what he was doing and donate. He touched the hearts of a beautiful family outside the Marsden on the morning of the walk, and somebody who worked at the Marsden took the time to show him specialist machines and operating rooms. But he could not know just how much he helped me to get through that day. He reminded me that Finding Cyril needed an update, and that I must get that fund to, and hopefully beyond, my goal. So here’s a shout out to the one and only Raphael. I look forward to sharing that experience with India-Rose and Ariya. My two nieces are determined to become part of the walking army.
Menopause station 2.0
If bone density problems where not enough, I was forced to leave the train at another menopause station recently. This was due to another not so nice side effect of menopause… Vaginal atrophy. This is one that we might not want to talk about but it is important to open this conversation. I put up with it for nearly seven years. But it got too much recently. I was too uncomfortable not to take action. It was making me feel low and miserable. My consultant has told me for a few years now about how I could use vaginal oestrogen as only a small amount is absorbed into the system, but I felt that I could not do it. To me oestrogen was the devil. It fed my cancer. It made it violently take hold of my body. But my consultant was right. I would know when it was the right time. And I would say to anybody in my position to only do it when you’re ready. A few months back, my head would not have been right. I would have done it and then second guessed myself the whole time, fearing for the oestrogen would cause problems. By doing it when I was ready, I haven’t looked back. Instead, I feel happier, more comfortable, less pain, more like me, and just a little less angry at the menopause. It also made me feel a little younger whilst my body navigates something it should have not needed to do whilst I am so young. Another shout out is needed to my sister for her clever idea of toothbrush holders to keep reusable applicators in! There are many more menopause stations that I will be forced to stop as I progress on this journey, but I am blessed to have an amazing medical team behind me, picking me up and helping carry me at these times. Something as simple as recommending magnesium spray at night time has helped me sleep a little better.
Scan or no scan, that is the question…
I had a recent medical stop that went very well. My oncologist spoke to me about how consistent my CA125 has been, and all my scans have been clear. She is happy for me to have a scan once a year. However, she feels it is important that I make this choice. So a scan is scheduled for the end of June but she is happy for me to change this. Do I know what to do? No. Is this a hard one? Yes. Part of my brain likes the idea of not having the build-up to a scan; the intense feelings of worry and pain. But part of me likes then having the reassurance of the scan – knowing that my body is okay, and is fighting to keep me safe and well.
So that’s me. That’s what my cancer journey looks like right now. I hope to have shown the highs and the lows of living life here. Do I sometimes wish I didn’t have to live this way? Yes. But that is not healthy. This is me. This is my life, and I will continue to embrace it through any stop I have to contend with. And I will continue to be open about all the feelings this brings me.
I hope this blog helps people to see that the struggles of a cancer diagnosis never really leave you. Whether you remain on treatment or not, they just change. I am approaching seven years since my first diagnosis. I am thankful to be free of cancer and with an amazing medical team behind me, keeping me well and helping me live. I hope this blog helps others to see what might be going on beyond what somebody living in the cancer world lets you see. It is all about coping. In the words of a little boy to his very loveable bear…
“You’re braver than you believe, stronger than you seem, and smarter than you think.”