I am a mountain and down in the valley below is all that I’ve overcome
My Breast Cancer journey – By Irene Wilson
I knew almost nothing of chemotherapy other than I was to have 3 months of Epirubicin and Cyclophosphamide (EC) followed by 3 months of Paclitaxel (EC-P), all delivered via the port in my chest. The oncologist arranged a heart scan to check I was strong enough to receive the drugs which can be extremely damaging on the heart, my ejection fraction was 57% which although normal, is on the lower end of the scale which generally ranges between 50-70%. In my laymen’s terms I understand the ejection fraction as the volume of blood that is pumped out when your heart beats, the EC treatment can slow the fraction % and according to Cancer Research UK, 1 in 5 who receive EC will have long term heart problems because of it. With that in mind I was thankful to have Dr Rebecca Robinson and sports physiologist Tom Cowan onboard to guide me, their mission was to set me an exercise plan that allowed me to train throughout treatment without further stress on my heart.
The EC chemotherapy combination is so strong that they space each appointment 3 weeks apart to allow the body to rebuild some immunity between cycles. I received my first cycle as a series of large injections delivered into the portacath, alongside a cocktail of drugs to stop me being sick and steroids to offset the side effects. Chemotherapy reduces the number of white blood cells which can make you more likely to get an infection, so to help rebuilt the cells after each cycle you must inject yourself at home roughly 24 hours following chemo with G-CSF (granulocyte-colony stimulating factor) which is a type of protein called a growth factor.
I slept for the next couple of days waking only to take the cocktail of drugs and inject myself with the G-CSF as instructed. I woke in the middle of the night in absolute agony, my temperature was soaring, my heart was racing, my whole body was in pain, I felt sick and genuinely thought I was going to die. I lay there thinking no way can I do chemotherapy, I had 15 more cycles in front of me and couldn’t see me getting past the first. Despite how I felt, I followed my standard pattern of mobilising on day 3 aided and motivated by day 27 of the Her Spirit strength challenge!
My heart rate was continuing to race, my temperature soared, and the hospital advised me to come in, they did several tests and concluded that I had had a bad reaction to the single dose G-CSF so for future cycles I would have a smaller dose over 5 days. They also removed the steroids from my treatment plan as they were causing my heart to race and leaving me totally wired and unable to sleep. In the following days I started to recover and was able to get out and walk.
Chemotherapy cycles were delivered every Friday, my protocol set by Dr Robinson was to allow myself 2-3 days to see how I felt, with an expectation that my fatigue would peak on the 2/3rd day after treatment and that I could then start to be more active. It would take a little time to work out exactly my own pattern with regards to managing treatment and activity, as reactions to chemotherapy at this stage are individual and unknown. During the EC delivery Dr Robinson explained that commonly, people who are active during the treatment find they can be most-active the week before treatment, giving themselves a “down-week” after treatment. This does not mean total rest, unless someone is very fatigued (which can hit a couple of days after treatment). In that down-week, lower intensity activity such as walking, gentle cycling and yoga can feel very beneficial. It’s also advisable to stick to 60-70% maximal exercise when you are on the EC medication and avoiding anything above 60%-70% on the 2-3 days during and after the infusion due to the medication being cardiotoxic, so it’s best not to combine it with high-stress on the heart. In the following week after treatment, so long as my energy levels are improving, there is no intercurrent infection and blood counts are okay, I could go back to a moderate level of activity. In the third week, I could undertake my normal physical activity, for this phase. The absolute indications for rest are a fever, low white blood cell count, general illness and any chest pain.
I had also been advised by the hospital to avoid running when on paclitaxel, which can be a medication that is toxic to the nerves. In some people this can cause neuropathy, which is when the nerves become damaged and people can become more sensitive to cold, or experience numbness, especially in the fingers and toes. Dr Robinson explained that this process would happen gradually, and it is not a risk that increases if you run or are active. If I were to experience symptoms of neuropathy, they would adapt my exercise plan and there is some evidence that exercise in fact improves this symptom.
I felt reassured to have Dr Robinsons advice as my own web searches found generic information on exercising during treatment, reliable guidance on heart rate zones during treatment cycles is almost non-existent. The transformation consultant in me desperately wants to dive in and help fix this (and I think I can) but for now I was so relived and encouraged to have a plan to follow specific to me, my cancer and my treatment, which would help me remain active and protect my heart.
The online cancer community is quite small in terms of professional people promoting exercise during cancer, I would suggest that Rebecca and Tom are leading the field, but also two excellent advocates are Helen Beeley who is a physiotherapist and lymphoedema specialist and Rudolfs Ceseiko who is an expert in exercise oncology, both have had cancer and post some very useful material online.
My training plan during the EC treatment went pretty much exactly as anticipated by Rebecca and Tom, week 1 was my down time recovering from the side effects and rebuilding my immune system with daily G-CSF injections in my belly. The injections also brought me further side effects with joint pain and poor sleep not to mention at this stage being fully thrown into the menopause and losing my hair.
I had invested in a Polar heart rate monitor which gave me an accurate and real time view of my heart rate zone clearly displayed on my phone. I joined the normal spin classes with my instructor Josh Brown and The Badass Spin Sisters but followed the sessions set by Tom, maintaining the target heart rate zones he had prescribed. I loved being part of the class during treatment as it made me feel normal, I got to see my buddies and have some banter, I could forget about treatment and just be me.
Strength training included several exercises such as RDL, calf raises, skater squats etc, Tom was always mindful of the need to build upper body exercises in slowly watching for any signs of lymphedema which can be a consequence of lymph node removal. I was desperate to do deadlifts, but he softened the exercise using bands which was of course the correct thing to do at that stage of my treatment.
As the weeks went on my immune system was taking longer and longer to recover from the chemo, unfortunately I had a brief delay due to catching Covid but a course of Paxlovid stopped that in its tracks. With my weakened immune system going to the gym became too high a risk, so Tom adjusted my training plan to enable me to exercise mainly from home and included lots of country walks and Park Run/Walk when I felt able.
The EC chemo delivery schedule came to an end after 12 weeks, I was very weak, my body had been battered by the treatment, but I had made it… now I would move on to the next protocol 12 cycles of paclitaxel every Friday. The first cycle almost didn’t go ahead as my neutrophils and lymphocytes were so low, the infusion started and I promptly threw up. I ditched the cold cap I had been wearing in a vain attempt to try to save some hair, it was simply too much as the freezing cold on my head was unbearable. The second cycle didn’t go so well either, I had a bad reaction to the drug and needed a large intravenous shot of piriton which knocked me out.
The oncologist tweaked my meds as the weeks passed and I adjusted to the new weekly protocol, resting/sleeping for 3 days and then mobilising. I was being hit hard by the side effects and in a lot of pain. Tom checked in on me regularly and adapted the plan to how I was feeling and what I was experiencing, I was now starting to get neuropathy in my hands and feet along with oedema which made my ankles stiff and swollen.
Tom introduced me to Marcia Mercia who runs a yoga class specifically for women with breast cancer and I started doing weekly sessions with her group, which was exactly what I needed at that point. I had previously done a lot of yoga, mostly a strong vinyasa practice but that for now was out of my reach. Marcia knew exactly the poses to help with the pain I was experiencing, and the class felt like a big hug. Tom and I agreed to pause my training plan in favour of walks and yoga, I didn’t have the energy and my pain was getting worse. I needed lorazepam to get me through the hospital doors and to prepare me for the G-CSF injections in my belly which was now covered in bruises from the 60 plus injections.
Early on in my diagnoses I had written to the breast screening department trying to understand how it could be that I had a negative mammogram in April and only 3 short months later, found a large 22mm tumour. I was invited to meet with the head of breast screening roughly halfway through my chemo cycles and despite feeling rough went ahead with the meeting. She explained that I had extremely dense breast tissue which made any tumours very difficult to see, they describe it as looking for a snowflake in the snow. Dense breast tissue is found in approximately 50% of women over 40 and is graded A to D (D is the extremely dense) ironically if you have a low BMI you are also at a higher risk of having dense breast tissue.
A radiographer looking at your mammogram during the 30 seconds they have allocated to review your scan can tell if you have dense breast tissue and if you take anything at all away from my story, it would be to find out how dense your breasts are, either by writing to your breast screening clinic or asking at your next mammogram. Mammograms have a place in identifying tumours but the 2D mammograms which are mostly what you see in supermarket car parks are useless at identifying them in dense tissue, hospitals tend to have 3D mammogram machines which are a little better, but ultrasound works well for extremely dense tissue like mine as the tumour shows up as black against a white background. I was shocked to hear that the policy is not to tell women about tissue density as it could lead to a lot of unnecessary treatment, she explained that for example if we were to offer an MRI scan it would need to be under contrast and most women wouldn’t want a needle.
My response was that we should be given the information and the choice and although sympathetic to that view and acknowledging that it is something being considered by the screening governing board, they have no evidence that it would prolong life. Statistically it may not prolong life, but it may avoid some of the treatment I have experienced if caught earlier and indeed that would save the NHS a lot of money. Screening changes cannot be made at a local level as they need national agreement, the departments responsible for change have been sitting on information for too long. I am obviously passionate about adding my voice to the cause but please ask about your breast density, check your boobs and learn about screening, as it might just save or at least prolong your life.
I had now completed 11 cycles of chemo with 5 more to go, I was thinking about stopping treatment due to the severity of the side effects. I could barely feel or move my hands and feet, my nailbeds were basically dissolving, my entire body was suffering with oedema, my mouth was sore and constantly dry, everything hurt! The oncologist was sympathetic but was clear that this treatment was to save my life therefore we needed to continue, he did however agree to reduce the dose by 25% for the final 2 cycles. For those remaining weeks I would walk when I could, I would do some rebounding to help with the lymphatic system.
I focused in on what I could control which was good nutrition, complimentary supplements such as berberine, vitamin d and medicinal mushrooms. When it got very bad Vonnie would often bundle me in the car down to Hayling Island for some sea air, where our generous friends Pip and Casey would feed us and give some much-needed respite from it all. I am forever grateful for those hours by the sea and the depth of friendship they continue to demonstrate.
Finally, chemo was over….I had made it through! I was totally mullered, unrecognisable in many ways due to the swelling from oedema, lack of eyebrows, eyelashes and hair didn’t help with the overall look! It was the hardest physical challenge I have ever experienced and one I will never do again. When you first start cancer treatment it’s an unknown, you are swept along in a tide of emotions and treatment protocols. I generally accepted my treatment as prescribed but I supported chemo with several complimentary treatments, acupuncture really helped with the neuropathy and overall relaxation, fasting 24 hours before and after chemo helped manage the nausea alongside some other reported benefits around cell autophagy.
Hyperbaric oxygen therapy helped with oedema and neuropathy. Exercise of course played a massive part, not only in my physical wellbeing but also from a mental health perspective, I had community and purpose, I had hope. My overall approach was to not discount anything, to be completely open minded, do my own research and make my own decisions on how it made me feel. I truly believe that we often instinctively know if something feels like it is of benefit and with that, it may well pay to become more tuned in to those feelings. Now I am empowered with the knowledge and the experience if I could go back, I would challenge the chemotherapy dosage, preferring for a lower dose over a longer period with complimentary support. Cancer treatments are advancing every day, more targeted immunotherapy is probably the way forward it’s less damaging overall but not yet fully accurate. Chemotherapy has a place but one day I expect it to be a thing of the past viewed in a similar way to when it was deemed appropriate to drill holes in your head to treat headaches.
I met with the oncologist a few weeks after chemo finished and he told me that they were very surprised at how severe my side effects were and that I fall within the 1-3% who suffer with extreme side effects. He explained that they can test for severity of side effects for some chemotherapies but not yet for the ones I received. He went on to explain a hypothesis he has is that it could be to do with my body composition and good level of fitness prior to treatment. Interestingly I have just this week read that a study is to be done looking at exactly that.
I had a few weeks before I would start radiotherapy which had been reduced from 15 sessions down to 5 following some research that had concluded during lockdown which showed a higher dose over a shorter period was as effective. I was keen to start repairing myself as soon as possible and started some physio for overall pain and neuropathy, which included using the Alt G running machine which is a fabulous bit of kit. It works exactly like any other running machine, but your lower body is suspended by air pressure which can go as low as 20% of your bodyweight, it’s like running on air. The Alt G was the perfect start to get me back running without adding to the pain of the neuropathy. That all came to a halt very quickly after I developed an infection in my big toe, I wondered if I would ever be free of the side effects. I had to have the nail removed and a course of antibiotics but worst of all, no training until the infection was cleared.
My resting heart rate prior to chemo tended to be around 55bpm, during treatment it would rise significantly in the days after an infusion and then slowly fall but overall, the resting rate increased and by the end of treatment it was 78bpm. I persuaded the oncologist to do a follow up heart scan once treatment had finished, my ejection fraction is unchanged at 57%, some changes including a little regurgitation are noted on my latest scan, but I am yet to know if they are of any significance, my oncologist certainly doesn’t think so. I have been fascinated by the heart rate training zones throughout my treatment, unlike today when I was an international athlete, we didn’t use heart rate training zones, but I can now see the benefit not only that the training plans give but also the need to have a good muscle base to help take pressure off the heart when exercising.
Radiotherapy finished at the end of June and on the 6th of July I signed up to do the Yorkshire 3 peaks challenge with the MOVE charity! I was physically weak and very broken, but this was the perfect challenge and adventure to close this last year of treatment and help provide motivation to get stronger. Tom was fully supportive and immediately set about creating the training plan to support me, we had 9 weeks to get me strong enough to cover the 25 miles of rugged terrain within a 12-hour window.
I returned to spin and worked on perceived rate of exertion, fatigue kicked in after every session initially needing 3 hours of sleep to recover, I didn’t even get my gym gear off before falling asleep! Over time the need to sleep after activity has decreased but the fatigue remains. It’s like someone suddenly pulls the plug out and you have nothing in the tank. It’s probably the biggest thing I have had to adjust to. I am however, a firm believer that when your body is indicating to you to rest that is what you must do. Many years ago, I was coached by the amazing speed coach Margot Wells who would stop a training session if I was tired or unwell, as it wouldn’t be a quality session and any benefit would be negated by increased fatigue and make me more susceptible to injury.
Tom’s plan included lots of leg work and plenty of outdoor walking, friends joined me as I walked up and down Butser Hill near the Queen Elizabeth Country Park. The first time I had to stop 3 times on the way up, that section is only a mile, but I had nothing in my lungs and my legs felt empty. I kept going back, kept doing more. The neuropathy in my feet was severe to the point I couldn’t tell if my new walking boots fitted or if I was getting blisters, my fingers were so sore I needed help just to do the buttons on my shirt or write in my journal. I remained consistent, followed the plan and a week before the challenge completed my longest walk of 12 miles. It was exhausting but I couldn’t cover any more distance, the neuropathy was too painful, but I hoped it would be enough.
On the 16th of September I set out to conquer the Yorkshire 3 Peaks, it was an unforgettable day where I met some incredible people and most unexpectedly, I got to spend most of the walk with Louise Minchin and a small film crew working on something for International Women’s Day next year. I was still weak and couldn’t feel my right foot. The preparation I had put in at one point, didn’t seem like it was going to be enough but I was absolutely determined to finish it, no way had I come this far to quit now! A small band of us had formed at the back Louise, Mel, Alison and Luci encouraging each other along the way with equal determination, an unforgettable memory.
Lucy Gossage had run back to meet our group, she is an unstoppable bundle of energy, and she escorted us up and down the final peak and had us all chanting in military style “I say Hard, you say Core! Hard-Core! As we finished to a hero’s welcome it was very emotional, the perfect end to a year of treatment.
I am continuing to build my strength and eyeing up a number of physical challenges for next year. I am not a writer, but I hope that I have given anyone who has read this far a little bit of inspiration to be active, adapt when you face challenges, engage with those around you, find your community and get out and love life!
I currently have no evidence of disease and now when I wake in the wee hours of the morning, I have the Sam Ryder song playing in my head ……..”I am a mountain and down in the valley below is all that I’ve overcome.”
Thanks to Mel and Holly for providing the platform to for me to share some of my story with the Her Spirit community.
Thanks to Vonnie, my partner of 20 years who has been with me and there for me, every step of the way. I couldn’t have gotten through it without her.
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