‘The Obstacle Is The Way’

Or how 2023 has not been all rainbows and unicorns

I ran the CCC race, a 100km trail ultra from Courmayeur to Chamonix, on September 1st. The previous six months have been filled with training, with running many races, but also with two operations and subsequent recoveries. I wanted to write a bit about that too, so here goes:

I received my appointment to attend for my routine three yearly mammogram for March 1 2023. Slightly more than three years had elapsed since my last one in the autumn of 2019, likely because of the pandemic, so I was pleased to receive the appointment letter. I do remember saying to my friend Gill, with whom I was in the process of gradually recceing the Dales High Way, that it would be most inconvenient indeed if this time my number were to be up, because I had so much planned for 2023 in terms of racing, most importantly the 90 mile Punk Panther Dales High Way in May, and the 100 km CCC by UTMB in September.

I was recalled for further imaging and biopsies for March 16. This in itself didn’t worry me, I had been recalled before and it had always turned out to be nothing, i.e. benign changes. In fact I have a long history with the breast service, going back to the mid-1990s when I had surgery for a benign condition. Since then I’ve also had multiple lumps which all turned out to be cysts, the most recent one during the pandemic. I have had more mammograms and ultrasound scans than some folk have had hot dinners as it were. My mother had breast cancer aged 45, and whilst one relative with breast cancer does not constitute a ‘strong family history’ indicating a need for genetic testing, it certainly ensured I was always very aware of the possibility, and in a way I have always expected to one day have it too. Breast cancer is very common with one in seven women in the UK being affected in their lifetime. Some people who have cancer say ‘why me?’, but I have always thought ‘why not me?’ every time I had skipped away from the breast clinic with a clean bill of health, lucky once again.

Well on March 16 I wasn’t skipping away out of St Luke’s in Bradford quite so merrily. As soon as I got into the imaging room I could feel that the vibe was quite different. Uh oh, this doesn’t feel so relaxed. More mammograms were done, and then onto the biopsy. The radiologist was already mentioning the word ‘treatment’. OK, we had definitely moved into a different dimension here. Always one for plain speaking, I asked him if he thought this was cancer (whilst appreciating he could not say anything for sure until the histology results would be back), and thankfully he was a plain speaker too and said a clear ‘yes’. He did think the lymph nodes looked clear as far as he could tell by ultrasound. I then sat down with a breast care nurse who said I should think about where I would want to be treated: Bradford, Airedale or Leeds. More evidence that no one here seemed to be in any doubt about the diagnosis.

I returned on March 27 for the results, with my friend Francesca. I am fairly OK at facing things alone in life, but this seemed as good a time as any to call on a close friend for a shoulder to lean on, an extra pair of ears to take in information, and hands to take notes. The doctor giving me the result, which was indeed breast cancer, seemed surprised that I was so unsurprised! I said, well, I asked your colleague when I had the biopsy, so I was fairly sure already. The tumour was about 2cm which is quite small, grade 2 (on a scale of 1 to 3), oestrogen positive (other results were awaited but turned out to be HER2 negative which is a good thing), and as far as they could tell it had not spread, therefore appeared eminently treatable. I asked to be referred for treatment at Leeds.

I would be lying if I said I didn’t have some anxious moments during this time. I would sometimes wake up at night with a start, remembering I had cancer, and feel a slight panic that it might have spread, or would be spreading with every minute’s delay to the surgery. Even though breast cancers generally spread quite slowly, I had visions of rogue cells flying around my body. Had they just reassured me that it spreads slowly because the NHS struggles to adhere to government time lines for referral and treatment? I had to make a concerted effort to not let my mind run away with worry, I think on the whole I succeeded. It took a few chasing phone calls to get a timely appointment with the surgeon at Leeds, even though it should not be up to the patient to have to push things through the system. This caused me the most anxiety. Initially I was given an appointment not until early May, which left me aghast. I had to use a combination of assertiveness and politeness to get this expedited to April 13 which was much better.

As soon as we (Francesca came to all my appointments with me) met the surgeon I felt very reassured. A very capable yet friendly young woman who was an excellent communicator and put me totally at ease. Surgery, which would be a wide local excision (i.e. lumpectomy) and sentinel lymph node biopsy (a sentinel node is the first lymph node to which cancer cells are most likely to spread), was booked for April 24, not long to wait at all! We did discuss a lot during that appointment, including my reservations about radiotherapy, having seen the damage it had wreaked on my mother, the potential for lymphoedema, which my mother had suffered with for the rest of her life (she lived for a further 40 years after her breast cancer). We also talked about running. The surgeon did say ‘I won’t stop you running’ so that was very encouraging. It turned out she was a runner herself.

April 24 and 25 was when Gill and I had planned to recce the final two sections of the Dales High Way. We managed to bring it forward into the week before my surgery, and walked from Chapel-le-Dale to Appleby-in-Westmorland over two days, staying the night in Sedbergh.

I remember enjoying our walk hugely, but also having to consider the possibility that I might not be able to run the actual event on May 13, which would be less than 3 weeks after surgery. When we crossed the Howgill Fells I suddenly realized with a shock that any future problems with my arm and/or shoulder mobility, or lymphoedema, could prevent me from using my running poles. And whilst I would be able to run the Dales High Way without poles if need be (I wasn’t using them on the recces), and probably any other UK race, not being able to use poles would make it virtually impossible to do long races in the Alps. Reaching the finish at the Moot Hall in Appleby I felt quite emotional, very pleased that I had at least already walked the whole route even if I could perhaps not run the event. I spoke to Ryk Downes, the Punk Panther race director, and explained that I might not be able to run the Dales High Way after all. He kindly offered that if need be someone else would be allowed to carry my race vest and I could take part non-competitively, which was so kind. Though I did feel I had already completed it non-competitively once, albeit in sections and walking, and didn’t really need to do that again. If I was going to do it I would want to compete!

I had also run some road races in the time since my diagnosis, in the process setting my all time 5k personal best (23:52) and a 5 mile age category club record (39:38), and felt a lot of emotions at these races: delight in my fitness, and worries about how much of that fitness I was perhaps going to lose this year, would I need more than one operation, chemotherapy, radiotherapy, and how would treatment impact my running? In addition I worried about my cello playing, which also is an important part of my life, and which could also be severely affected if anything untoward happened with the mobility of my right (i.e. bowing) arm.

I said to fellow Ilkley Harrier Ritchie, who had kindly offered to support me during the Dales High Way, that the race might not be happening for me as I had hit a bit of a bump in the road health-wise. It was Ritchie who gave me the phrase ‘The Obstacle Is The Way’, the title of the best-selling book on stoicism by Ryan Holiday. Ignorance on my part, but I had not heard the phrase before, and I still have not read the book. But the art of turning obstacles into opportunities that is implied by the title certainly appealed to me, and I have adopted this as one of my mantras. Not that I had ever felt I had a right to my thus far perfect retirement road, but this phrase made me better understand that this particular bump in the road is an integral part of what is my road to travel.

As the anaesthetist sent me to sleep on April 24 he said: ‘think of something nice’ and I thought of the Dales High Way. As soon as I woke up I thought of the same. I realised I didn’t feel too bad at all, and thought, surely it must still be a possibility! I went home the same day and by the next day I was out for a short walk down to the river with a friend. I did feel a little wobbly but didn’t let on! I walked a bit more every day, often with running club friends who volunteered to keep me company, I did legs-only strength training, and cautiously resumed running on May 8, two weeks after surgery. I then successfully raced the 90 miles of the Dales High Way on the 13th, competitively, wearing two sturdy bras with my race vest sort of functioning as a third one, and had no issues at all. Well, my quads stopped functioning somewhere along the way but I cannot blame that on the operation!

The histology results, which I had been given on May 10, were as good as they could be. Clear margins were obtained in the surgery and the lymph nodes had indeed been clear too (they had taken out five, a number which initially alarmed me, but it was explained that they had been very close together so the surgeon had been unable to just isolate a single sentinel node). Brilliant news. No further surgery required, but radiotherapy was to be the next step. I expressed my reservations about that to the junior surgeon I saw at that appointment, but we agreed to leave the discussion for when I would see the oncologist. I was allowed to resume running (I didn’t mention I had already started two days earlier anyway, or that I was intending to run 90 miles non-stop!)

I was due to see the oncologist on May 25. By now I had fully understood that after a wide local excision, even if the margins and the nodes are clear, radiotherapy is always given, virtually without exception, to mop up any stray lingering cancer cells and reduce the risk of recurrence. The more I pondered it the clearer it became for me: I was not keen at all on having radiotherapy for fear of (admittedly rare these days) late effects which can come months or years down the line. And specifically fear of any reduction of my lung capacity and function and how this would impact my running. I tried to separate out, as much as I could, the trauma of having witnessed the devastation inflicted on my mother’s chest by 1970’s radiation, and which directly contributed to her death forty years later, from objective knowledge about late effects that are much less severe, yet still possible with modern radiotherapy. Perhaps my mother had been especially sensitive to radiation, this is ‘a thing’, and who was to know if wouldn’t be too? There is no test to determine this, you only find out afterwards when there is no going back. I did a lot of research, read relevant published papers, spoke to people with knowledge, and spoke to friends who know me well. For the sake of brevity I will not reproduce all risk calculations and reasoning here. The more I pondered it the more reluctant I became to have radiotherapy. And I understood from my research that having a mastectomy would achieve the same or even better risk reduction.

The oncologist was very keen on me having the radiotherapy though. The risk of recurrence he quoted was higher than I had worked out myself (there are online calculators to do so) as apparently there had been a tiny (2 millimetre) satellite tumour found which immediately makes the cancer multifocal, and the tumour, whilst oestrogen receptor positive, was progesterone receptor negative which also slightly increases the risk of recurrence. OK, this new information on risk did make me realise I certainly did not want to stop at just the lumpectomy without radiation.

On precise questioning the oncologist admitted that lung function would indeed be affected by radiotherapy, because a slim margin of the lung is always irradiated, where it meets the chest wall. I had not even known this, I thought hitting the lung would be accidental, but no, it always happens. Not something which is normally mentioned. Yes, it’s likely to be extremely marginal (and not noticeable to most patients) but my reasoning is, why should I strive for marginal gains in my running by training hard, only to wipe that out by radiation damage to my lungs. Obviously, if the cancer had spread to my lymph nodes I would have accepted the need for radiotherapy, I am not daft.  But seeing it hadn’t, I was saying a definite ‘no’. So we trotted back to my lovely surgeon for a discussion about a mastectomy and she explained all the options. I was given some thinking time, I managed to have an appointment with another oncologist too as I had some remaining questions about the risk calculation which had been presented to me, and by early June I had made up my mind to have a mastectomy (without reconstruction, keeping it as simple as possible) and no radiotherapy. I would accept at least 5 years of hormone treatment (an aromatase inhibitor, which blocks the production of oestrogen) again to reduce the risk of cancer recurrence on the same side (still possible even after a mastectomy), or a new oestrogen driven primary cancer on the other side.

My surgeon was very happy to perform a mastectomy for me. I felt a bit guilty seeing she had done such a neat and tidy job with the previous operation only for it all to be removed now, but she insisted I wipe any such guilt from my head straight away. She said that at the start we don’t always know what is the right thing to do for a particular woman. I was delighted to be given a date of June 26 for my surgery. I could hardly have forced the NHS to give me an early date merely to accommodate my ‘need’ to run the CCC on September 1, but this date gave me every chance of timely recovery. I managed to squeeze in running the Hardwolds 40 on June 24, I was very cautious not to get heat exhaustion with an eye on my imminent surgery two days later! My surgeon predicted that I would recover just as quickly from the mastectomy as I had done from the wide local excision. And this time there was no need to dig around in my axilla to remove any lymph nodes so my arm should not be too much affected. And so it was really. This time I went to sleep and woke up with thoughts of the CCC. The anaesthetist put in a paravertebral block on top of the general anaesthetic which meant I had no pain at all when I woke up, and it actually seemed to go on working for about 30 hours, and after it had worn off I still had no pain to speak of. In the post-op period I made sure I did my prescribed arm exercises and scar massage to keep my arm and shoulder mobile, and I still do them. If ever I neglect these I can feel stiffness setting in so these are still important to do.

I had gone home the same day and the next day I walked 3 easy miles, then increasing my mileage every day. After one week I walked 11 miles, I do recall feeling quite tired after that! Perhaps it was a little far. But in the two weeks after surgery I walked a total of 25 miles the first week and 35 miles the second week. Not quite my 50 mile running weeks but it was a reasonable substitute, especially as I was training for a race that would involve lots of hiking anyway. I kept up legs-only strength training either in the gym or at home. By the middle of the third week I cautiously resumed running. I had actually driven over to the Lakes to go up Skiddaw to get some much needed ascent in, I hiked up and gently ran down and back to the car in a nice eight mile circular loop. Exactly three weeks after surgery I walked the Wharfedale Three Peaks (Birks Fell, Buckden Pike, Great Whernside, from Kettlewell) with my friends Gill and Hilda, a tough day out, 16 miles and almost 4000ft of ascent, and felt very pleased and grateful for this fantastic progress.

After the operation I had almost immediately developed a seroma, which is a collection of fluid inside the tissues, very common after a mastectomy. It’s the body trying to fill up the suddenly available space. It was the same size as my breast had been, but a lot more wobbly! The surgeon had reassured me you cannot make it worse by exercise, so I just made sure I wore compression bras to give lots of support. It did delay my return to running by about a week, but I can’t really complain about that, though at the time it was a pain. The body very slowly reabsorbs the fluid, it has now (mid September) almost gone. By the way, after the surgery, in the lab they found two further small areas of DCIS (ductal carcinoma in situ, a type of early cancer which does not yet invade the surrounding tissues). These areas had not been seen on imaging. Better out than in I say, though radiotherapy may have dealt with that equally well. Still, it made me doubly glad I had chosen the mastectomy.

I went to my beloved annual Oxford Cello School at the end of July, four weeks after surgery. Initially I was worried about lugging all my stuff about between classrooms, playing all day and using my right arm too much, perhaps even provoking the seroma to increase or heaven forbid, lymphoedema to appear (which can start at any time down the line apparently), so initially I tried to take it slightly easy. But I had no problems at all. I had sewn a little cushion to hang around the neck of the cello to place between the instrument and my chest, I have seen those around over the years though I am not sure if all cellists who use them have had a mastectomy, I think they are actually meant to protect the cello varnish rather than the cellist! Cello school was not hugely conducive to running training, due to having a packed timetable and being in a fairly flat part of the country. Though there was a small hill, and we were situated right on top of it in Pangbourne College, so I did get a descent and ascent into every run, and I did run every day.

Back in Yorkshire in early August I had a month left to complete my interrupted CCC training. I managed to get a couple more 50 mile weeks in with as much ascent as I could find. I ran the 32 mile Punk Panther Six Dales Trail as a training run, though on the day I felt quite competitive after all! I did some track sessions with the club, and returned to the Wharfedale Three Peaks once more, running them this time. I resumed the arm component of my strength training with some light weights. By the time I arrived in France on August 21 it was 8 weeks since my mastectomy and I felt fully fit.

I have written this as a postscript to my CCC blog post. Some friends know I have had cancer this year, but I had not spread the news far and wide yet by announcing it on social media. But there is no reason to keep it secret. As breast cancer goes, I have come off very lightly indeed. No chemotherapy, no radiotherapy, and a very quick recovery. I am taking an aromatase inhibitor (to block the production of oestrogen) for at least the next five years, if not ten, and unfortunately there are side effects. I can cope with the menopause type symptoms, having gone through it once I can do it again 😉 but I am now developing some joint pains which are less handy for a runner. Or a cellist. It’s work in progress on how to deal with this, there may be alternative brands and types to try which apparently can make a difference.

Though retired, I still have a zero hours job at the University of Leeds sports centre The Edge. I have been working there as a lifeguard since 2019. Obviously after my operations I could not swim, could not do the monthly training, and was therefore unable to work. And despite my good recovery, potentially hauling a casualty out of the water might be problematic in the long term. I am hugely grateful to have been redeployed to ‘dry side’ duties on reception, which I enjoy very much, working about one shift a week. Unless I am on one of my long holidays 😁 The support at work has been excellent and I returned as soon as I could after both operations, enjoying the contact with my colleagues and learning new skills.

I was very lucky indeed that this was caught so early by screening, I had not felt a lump. I think that maybe it is important to tell this particular cancer story, if only to show that a cancer diagnosis does not have to be as serious as it can of course be. And that you can go on being physically active, very active even. I really struggled to find information about returning to running, or good examples to follow. Most information I read was related to stimulating cancer patients to be active, for instance by doing couch to 5k. Absolutely brilliant, but not what I was looking for. My only example was Nicky Spinks, who was back on the fells three weeks after her mastectomy in 2006. I clung to that fact determined to do the same. Though of course, when it comes to running, I will never ever be anywhere near the same league as Nicky is in!

A final point about breast cancer: I found a fantastic support group via Facebook called ‘Flat Friends UK’. These are women who have had either a single or double mastectomy and are choosing to live without having a surgical breast reconstruction. The group is enormously positive and supportive. Some wear prostheses in their bra, some do not. Many with double mastectomies live completely flat (like my mother did too). Seeing all these fabulous examples has certainly strengthened me in my feeling that it is totally OK to not use a prosthesis as a ‘uniboober’ and just be a bit lopsided, which is what I have been doing so far. I just wear firm crop top style sports bras. I think someone would have to look quite hard to spot that I only have one breast, but if they do, so what? Whether this is a good option obviously depends on every woman’s personal outlook, on the situation (e.g. work) but also on the size of your ‘remainer’ (yes that is really what they call it!). If this information is of any use to you, or someone you know, then I will be glad to have mentioned it.