By Irene Wilson
Part 3 – The Lakes to London challenge was ending what next?
I woke from surgery to hear the surgeon say he had removed the tumour along with 3 lymph nodes which when analysed showed that the cancer had not spread, what a relief.
I have had many general anaesthetics before, this surgery was number 13, so I followed a now familiar routine for pre op preparation and post op recovery. In the days before surgery, I made sure my hydration was optimal with an electrolyte carb drink the night before to see me through. Post surgery I favour a high fibre diet with lots of fluids for the first few days, this helps flush the drugs out and brings the bodily functions back to a normal rhythm, then I will be more protein focused to help the body repair. I don’t put myself under any pressure for the first 2 days, but I gradually increase my movement until day 3 where I make a conscious effort to be more mobile, have a shower and a change of clothes as well as cutting back on the stronger painkillers. The anaesthetic hit me harder than any I had previously had, perhaps it was just my getting older, but I felt weaker for longer.
My spin buddies were keeping in touch and clocking up miles for TBC, sponsorship money was growing every day as my fellow Butt Cheeks kept swimming, running, cycling, and walking. Her Majesty the Queen had sadly passed, Sammie donated to the team Butt Cheeks effort the miles she had covered overnight queuing to pay her respects to the late Queen. It truly felt like we were all in this together, all pulling in the same direction, all feeling that the collective effort would chase the cancer away, it was a fabulous show of community over cancer and demonstrated the power of exercise to get us through tough times.
We drove to Guildford a little over a week after my surgery to get the pathology results which would hopefully confirm that the surgeon had achieved clear margins in the tissue surrounding the tumour. Unfortunately, due to the Queen’s funeral all the lab results were delayed so after a quick wound check we were back in the car none the wiser. We returned a week later, optimistic and full of hope only to hear the words “I’m sorry we didn’t get clear margins” I was devastated but ever practical, I wanted to know how the clear margin thing worked. He explained that he knows roughly the size of the tumour and if he sticks his finger on it he knows his finger is a little over 1cm so in my case removing a 3 finger area should have got it. My lab results showed invasive ductal carcinoma in all margins, and he had found another little 2mm tumour alongside it.
The next question was how I would like to proceed… go in again or do a mastectomy? I wasn’t psychologically ready to have the mastectomy, test showed I didn’t have the faulty BRAC gene and in my case, it would make no difference in life expectancy whether I had a further lumpectomy or a mastectomy. I opted for a further lumpectomy to which he replied ‘Great can you do a week Monday?!’
We drove home in the now familiar silence processing all we had just heard and knowing all that would come with another surgery. When we got home, I grabbed my spin gear and headed to the gym, I pushed a bit hard at that class and caused a little internal bleed at the tumour site, but the endorphin rush was worth it. Endorphins are neurotransmitters that are naturally produced by the body. They are responsible for making you feel happy and can also alleviate the feeling of pain and anxiety or stress, exercising helps boost your natural levels which is why you generally always feel better after exercise.
The Lakes to London challenge was ending, I sat at home watching Mel and Holly being interviewed during the London Marathon and had a tear in my eye, I was so in awe of what they were achieving. They were two very determined women who had taken on a massive physical challenge, to raise awareness and funds for women with cancer. It somehow gave the fight against cancer strength, alongside what Mel and Holly were doing a whole community of women were also doing something positive, something physical. In that moment, it felt like everyone was fighting for me. I couldn’t have been prouder of the community I had found, my gym buddies, badass spin sisters, Her Spirit, Team Butt Cheeks and every single person who sponsored or showed encouragement.
I woke from the 2nd surgery to find the surgeon had this time put a chest drain in which would curtail my gym exercising for a while, yet I was still able to follow my regular post-surgery protocol and walked every day until the drain came out and then back to the gym for spin classes, which I was now doing without holding the handlebars which meant my core got an extra work out!
My surgeon had arranged for me to have a Prosigna test which helps identify the risk of a distant recurrence and therefore drives the decision on whether chemotherapy would be required. We met with the oncologist at St Marthas to receive the results, it was another grown up moment which you can’t escape. The test showed that I was indeed at a high risk of distant recurrence and would require 6 months of Chemotherapy followed by 3 weeks of Radiotherapy. He explained that my risk of distant recurrence was 17% and if that were to happen, I would only have a 20% chance of living 5 years, chemo would reduce that risk by a third and would start soon after surgery.
Unfortunately, the 2nd surgery also didn’t get clear margins, the pathology showed what was now on the edge was ductal carcinoma in situ, rather than invasive ductal carcinoma so that was a little hopeful. I opted for a 3rd and final lumpectomy to try for clear margins with the caveat from the surgeon that if he didn’t get it this time, I would need a mastectomy with reconstruction. He advised that a silicone implant would not be a good option in my case mainly due to possible rejection and not something that performs well if you do a lot of exercise. For the reconstruction, he checked if he could take anything from my belly to construct a new boob but that also wasn’t an option. That left only one procedure called a TUG flap which would take skin and tissue from my inner thighs, it is a big operation, involves 2 surgeons and takes 8 to 12 hours, the thought of it absolutely terrified me.
The 3rd surgery took place a little over a week after the 2nd and I was really starting to feel the effects of the general anaesthetics like never before. To help they brought in an anaesthetist who specialised in new technique using nerve blockers in the chest and some different drugs to help with recovery. I woke from that surgery covered in a large bubble wrap blanket with hot air blowing underneath and compression sleeves on both legs pumping away to help prevent blood clots. My recovery was certainly quicker, and I was pleased to have been a test case for the new procedure.
On the 1st of November 2022 we drove to Guildford to receive the pathology results, again in complete silence, we were battered with disappointment and braced for more bad news. The rain was torrential, rainbows were popping up everywhere, a huge one stretched ahead pretty much exactly where the hospital was, even when I looked in the wing mirror, I could see rainbow reflections. Rainbows are the universal symbols of hope, but I didn’t dare say it out loud.
I was tired of being optimistic and preparing myself for the inevitable mastectomy conversation. I knew I would need psychological help to process that surgery, my standard protocols wouldn’t be enough to deal with the physical and mental trauma. The surgeon called my name, and I could see the smile on his face, as he put his arm around me, I knew we had clear margins.
We didn’t drive straight home that day… we made a detour and stopped at our favourite country pub and ordered a bottle of their finest pink fizz. We talked about the rainbows and how that morning we had both hoped that they carried a significant meaning, but hadn’t dared mention it.
The good news had recharged my energy, I had a couple of weeks before they would insert a portacath in my chest to deliver the chemo and a further couple of weeks before chemo would start. I instinctively knew I needed to exercise to rebuild myself after the quick succession of surgeries and prepare for chemo. Most surgeries need around 2 weeks for the skin to heal and 6 weeks for the structures underneath to repair, the tumour overall was around 5cm by the time he had finished so significantly bigger than on the initial ultrasound. I knew I could do some movement if I was careful, and Her Spirit obliged with a 30-day strength challenge throughout November. It was a lot of fun and basically meant I could roll out of bed and do a series of exercises, in my case mostly squats to start with. I took various videos of me in my PJs and posted them everywhere including within the Her Spirit community pages. I did a series of squats in my hospital gown while waiting for the portacath procedure, I was rumbled by the nurse who I think just thought I was nuts!
I knew almost nothing about chemotherapy, I knew that if I wanted to give myself the best chance of living as long a life as possible, I needed to have it, but the more I researched the more I realised how cardiotoxic it is and how damaging it can be on your heart. I wanted to continue to exercise as much as possible, I mentioned this to my oncologist who just sort of nodded, he clearly knew more than me on how brutal chemo can be. Most published exercise guidelines talk about the number of minutes you should exercise but when you drill down its difficult to find anything specific, the main issue being that we are all different, our cancers are different, our treatments are different, we have different baselines and different reactions to the drugs. I couldn’t find any research on recommended heart rate zones while exercising during chemotherapy and then I stumbled across a recording from the MOVE charity where Dr Rebecca Robinson and sports physiologist Tom Cowan both did an excellent presentation on exercise during cancer treatment. I knew I needed them on my team and within days they were! Rebecca had all my medical information, and the schedule for the chemotherapy drugs I would be taking, Epirubicin which is particularly strong and very toxic on the heart and Paclitaxel which is less strong but given more frequently, it is also cardio can cause a lot of nerve damage. Tom specialises in cancer and cardiac exercise so in combination with Rebecca, he built me a program to follow during chemotherapy with the main aim to have me complete chemotherapy with as little damage to my heart as possible whilst maintaining as much fitness as possible. The program worked on a variety of maximum heart rate percentages depending on where I was with treatment, for example in the days after an infusion my aim was to exercise at 60% of my maximum heart rate, gradually increasing as we headed towards the next one.
As I recovered from surgery and with the portacath in place, I continued to complete the daily Her Spirit Strength challenge, I was really surprised at how much stronger I was getting just with those simple exercises. I had hooked up with a friend and neighbour Biddie who had also been diagnosed with breast cancer some months before me, we would try to walk most days depending on our treatment, we would regularly cover anywhere between 2 and 10 miles. I had discovered Park Run shortly after my first surgery and often walked that with friends on a Saturday, occasionally volunteering as a tail walker which meant I didn’t always officially finish last.
My first chemotherapy infusion was approaching, I had prepared myself as much as I possibly could, controlled all that was controllable and had the very best support around me.
Surgery really tested my physical and mental resilience, I had surprised myself with how well I handled it much of which I am sure is due to the exercise I maintained and the subsequent endorphin rush, which mostly helped keep me strong and positive.
During cancer treatment, people would often comment on how strong I am but the reality is you really have no choice, if you refuse the treatment, you will probably die if you have the treatment you might live, it’s that simple, it’s the perfect motivator!
Next week Chemotherapy – what could possibly go wrong!
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