It's World Cancer Day and while this is nothing to celebrate I hope my blog can help those diagnosed with cancer and their carers know that it's not all sickness and surgery. It's possible to have a life in between treatments.
In August 2020 I was diagnosed with Stage 2b Invasive Ductal Breast Cancer after feeling a small round lump in my left breast 3 months before. Having no family history of breast cancer or risk factors, as a nurse I had convinced myself it was a cyst I'd had in the same place 20 years before. The only difference was this lump was slightly achy. I delayed going to see the doctor as I knew the situation with GP surgeries was chaotic with the impending fallout from the first round of COVID but I was also extremely busy with the surge in open water swimming and the impact it was having on my open water swimming business. I won't deny the floor fell from under me as I received the news. I catastrophised immediately (without knowing the full picture) and fled to my financial adviser to collect my insurance policies to check my life insurance cover 15 minutes after the receiving the news. The strange things you do after receiving bad news!
Following diagnosis I was scheduled for a lumpectomy 3 weeks later with 6 rounds of chemotherapy 3 weeks after that followed by 18 rounds of radiotherapy. Finding out I needed chemotherapy was the hardest news. I needed it because the cancer had spread to one lymph node and the tumour was slightly bigger than they first thought. It was a Grade 3 tumour, the most invasive stage. They removed the lump and 2 lymph nodes. I knew then my life was about to change and this is when I shed tears but not because of the diagnosis, it was because of the treatment that was to follow and the restrictions it could put on my fun-filled active life in the outdoors.
One of the first questions I asked when being told I had cancer was whether I could continue to swim or not. I knew about infection risk with open wounds and also if I exerted myself physically too much after surgery it might hinder deeper tissue from healing but what about chemotherapy? Can people feel well through chemotherapy? My father had testicular cancer in his 40s and he was desperately ill. I was a teenager at the time and it was scary to watch. He survived but his response to treatment had stuck with me. Was it even safe to swim outdoors (and indoors?) Will it put my recovery back? Whatever the answer was to be I was ready to challenge it. Swimming was my sanctuary, my fun, my escape, my business. It's where I really felt like me. I wasn't about to accept I couldn't swim. This is what I was told:
I could swim but if I had any open wounds I should avoid swimming due to infection risk so how the chemotherapy was to be delivered was vital to the decision - peripheral or central.
My immune system would be much lower so public indoor swimming was also advised against (especially during a pandemic!) plus the bugs you can get in freshwater and the sea could be an infection/sepsis risk if I caught something. Chemotherapy lowers your neutrophils too and neutropenic sepsis is not something you want to have!
I should avoid swimming in pools during radiotherapy as the chlorine can irritate the area receiving radiation
After working in intensive care I knew only too well about sepsis and what it can do to healthy body, never mind an immunocompromised one. I hoped I didn't need a central catheter. The cold water was my therapy for everything and I desperately needed it to be my therapy during cancer treatment. Apart from that, no one could say how I'd react to cold water, or whether it could help or hinder. I know that cold water can boost your immune system but if you over step the mark it can lower it so striking a balance was key. It can also reduce inflammation and ease pain so if I found myself with these side effects then off to the water I go (if I could manage!). A simple and possibly naive plan but a negative response was not an option at this time.
Thankfully, my first treatment was administered through a vein in my hand (peripherally) and after the worst 6 days of my life (headaches, nausea, constipation, bloating, no sleep, mouth ulcers, streaming eyes, crying and depression) I started to feel like leaving the house. The first place I fled to was Port Stoth beach at the north end of Lewis, which was likely to be quiet. Neil drove as I was too weak and a bit spaced out with the chemo whoosh still circulating in my head.
Once I got into the water I was grinning from ear to ear and felt the awfulness of the past week had been washed away. I was still a bit sore from the surgery 4 weeks before and if it wasn't for this I could have stayed in all afternoon! The cold seemed to affect my wound a lot and it ached a lot but I didn't really care as I was able to do normal activities in between treatments! I could have cried with happiness ( and a little pain!).
Between every treatment I managed to work and swim but was getting weaker as the weeks passed. It was taking longer to recover from each treatment and each treatment got worse in side effects. I started calling my tablets by swear names. The f*ckers (steroids), the b%stards (anti-sickness) and the shitting wan&er (daily injection) were a necessary evil. I don't think I swore as much in my life and it's kinda stuck with me but I don't mind, others might ☺️. As soon as the side effects of chemo wore off, I ran to the sea to be free. It was my therapy, my identity and my escape from the patient I was desperate not to become. Sometimes it was enough to get into the car and be driven to the beach.
One time I remember being so weak that I just made it to the water's edge, took my joggers off and just sat where the sea was coming in over my legs to my waist. It was winter and 5 degrees so the wind chill and water temperature took a lot to recover from even doing that. A wetsuit was non-negotiable on the worst days. I didn't have the strength to take it off. Neil was always standing near me on watch or sometimes came in with me. Being a nurse and with no previous health issues, one of the hardest parts of going through treatment is becoming a patient and relying on others. I didn't want to be a patient and spent many days feeling frustrated while I battled hard with vulnerability. I probably created more strife for my family being this way but it was my way of coping. I didn't want to be looked after but chemotherapy leaves you with no choice. Neil became my shadow and he dutifully followed me wherever my adrenaline took me next. I can't imagine how people cope without anyone. This thought pains me.
There's so much I don't remember thanks to chemo fog (it's a real thing!) but what I couldn't do physically I was certainly making up for online with sea safety courses, charity webinars and business development meetings! It really was too much though and caught up with me eventually as I finished 9 months of surgery, chemotherapy and radiotherapy in April 2020. Just when I should have been recovering, the summer tourist season of swim guiding, swim holidays and boat trips was upon me. The commitments I had made during my adrenaline-filled cancer treatment had arrived and I wasn't sure if I had the strength to deliver them. Somehow, with the help of family members near and far, a supportive and understanding team, the addiction of smiling swimmers and the personal benefits of cold water I made it to the end of the 2021 season with a smile on my face and a business that had survived and thrived. Much like me.
As I reflect on how I dealt with a cancer diagnosis whilst running a business I'm not sure I was taking in that I had cancer. I still don't feel I'm in the cancer camp, apart from when I look in the mirror longing for my long hair to return. On the face of it I looked like I was just getting on with it, some would say 'strong' 'brave' 'inspirational' but I honestly couldn't relate these words to what I was going through. I was coping. After setting up a small facebook group called Swimming Through Cancer I realised everyone who was going through these harsh therapies coped differently and not everyone could or wanted to swim. To me, they were strong, brave and inspirational for what they were going through and still are.
The purpose of this blog on World Cancer Day is to give you a snapshot of how life can be during cancer treatment for a small business owner, coach, swimmer and to share my experience of swimming through cancer. Aside from losing my father in 2019 it was the hardest year of my life but there was a chance I could have avoided chemotherapy if I had gone as soon as I had discovered that lump. Please don't delay in making appointments to get changes checked. Try not to be afraid, face it head on.
So if you are reading this and you or you have a loved one who's an outdoor swimmer going through cancer treatment here's a few things I learnt along the way:
Lower your expectations of how you'll cope - this leads to much frustration
Ask your surgeon when you're able to swim again after surgery
Ask your oncologist if you're likely to have a long-term catheter for administration of chemo - this will give you an idea of the answer of whether you can swim or not.
Expect to give up swimming during treatment as many have to, this will help you accept it if you're told firmly.
If you can go swimming, never go alone, stay within your depth, wear easy clothes to put back on, don't expect too much that way you'll be delighted if you manage more.
Protect yourself from cuts & grazes by wearing neoprene boots & gloves at least (a cut is an entry for infection). Some experience neuropathy during chemo plus the effects of cold water might make your feet & hands lose feeling so you could cut yourself and not know it.
Try and exercise every day, even if it's just around the house a few times or to the corner of the street.
Drink plenty water and eat little often. No big meals.
Follow your prescription, ask your oncologist what everything is and why you need it. If receiving chemo don't think you'll outwit the more serious side effects of chemotherapy. It's short-term.
If you can't swim, go to the water's edge, any water. Spend time there. Once every day if that's possible but don't make it a goal which might cause pressure. Being around water can be just as healing.
If you can't get to nature watch wildlife programmes, Blue Planet, open water swimming films on YouTube, Vimeo and Netflix and watch My Octopus Teacher, again and again. Connect with nature through vision and sound.
Go easy on your family if they forgot to buy you the exact snacks you wanted. Steroids can make you very hangry!
Meditate, practice breathing techniques or pray and take each day as it comes.
Remember it's harder some days on your family than it is for you. Acknowledge that to them. Let them know you're still there!
And accept help from outside if it's offered. You and your family will need it. The stress of a diagnosis is hard enough without the side effects of treatment so take help when it's offered.
If you'd like to connect with other swimmers who have all types of cancer please request to join the Swimming Through Cancer Facebook group. It's an informal group with Open Water Coaches, Physio's and experienced swimmers going through cancer who could help support you on your cancer journey. Please share this with anyone you think might benefit.
Thank you for reading!
Norma xx