Today is World Water Day, and this year’s theme is “valuing water”. Water in the Peruvian Andes is an increasingly precious resource, with the continual retreat of the high mountain glaciers forcing communities downstream to think about how to adapt to the challenge of peak water, the point at which water production reaches its maximum before continually declining (in this case due to glacier response to a warming climate). While water quantity is threatened, so too is water quality, with contamination, both natural and anthropogenic in origin, compounding issues around water availability and security. Water in the Andes poses not only a threat to water resources, and inextricable links with food and energy security, but also poses a threat in the form of natural hazard. As the glaciers retreat they contribute to the downstream growth of glacial lakes, dammed by often unstable glacial sediments and dead ice. These natural dams can fail, leading to rapid flooding downstream, sometimes with tragic consequences. Yet while water is in many ways a threat in this region, it is also central to Andean culture and livelihoods. To explore how we value water, we need look no further than Peru.
So the age of the virtual conference is still very much upon us, and later this week I’ll be presenting some initial data on participation with our citizen science tool for mapping glacier change in the Peruvian Andes – ‘GlacierMap‘. The poster is being presented at the International Glaciological Society’s annual British Branch meeting, but so non-attendees can take a look too, you can find a copy of my poster here!
I have been a member of the Equality, Diversity and Inclusivity (EDI) committee in my department for the past few years, and recently volunteered to continue my term on the committee due to my personal interest in EDI and drive to contribute to positive change. While I am fully committed to this role, I am also aware that “feminine” activities related to service and pastoral care have historically fallen disproportionally to women and minority groups (Social Sciences Feminist Network Research Interest Group, 2017). This work may be valued less than “masculine” activities such as research and management, and is often referred to as “invisible labour”. EDI-facing activities related to making the workplace environment better is one example of such invisible labour, but in addition to work on committees, task and finish groups, and outreach activities, this can also include substantial contributions to student pastoral care because a woman/person of colour/gay man etc may be perceived as a role model for someone with a similar protected characteristic. This disproportionate burden of invisible labour may have knock-on impacts for research productivity of traditionally marginalised groups, yet may not be recognised when applying for positions and promotion. Disproportionate representation within “feminine” and “masculine” activities are thus certainly contributing to the “leaky pipeline” and acting as a barrier to progression into senior positions within the academy.
I was interested to find out more about the extent to which membership of EDI committees and engagement with EDI-facing activities is proportional to the personal characteristics of those working in HE (Higher Education) today, so as an informal starting point I conducted a poll on Twitter to explore EDI participation by gender, ethnicity, sexuality, role, and disability. The poll ran for one day only, and received 127 votes (number of responses varies by question), and the results are shown below. As the number of responses is relatively small, and the poll was conducted via Twitter – which may bias results depending on the extent to which people from different groups engage with social media – I am taking the results with a hefty pinch of salt. That said, some clear trends emerge. Note that comparisons below relate to personal characteristics of staff in UK High Education institutions, and will differ for other regions.
69% of respondents to the poll identified as female, 27% male, and 4% non-binary. In 2017/18 54.4% of staff in UK HE identified as women, according to statistics from Advance HE (2019). This figure encompasses both academics and professional and support staff (for academic-only staff that percentage drops to 45.9%, and rises to 62.7% for professional and support staff). Staff identifying as other/non-binary were not included in the report due to small numbers, however HESA (2020) statistics from the same academic year report that 35 staff out of 211,980 (0.017%) in UK HE identified as ‘other’. That 69% of respondents to the poll were female and 4% non-binary thus clearly highlights the disproportionate “burden” on these groups to engage with EDI and drive change. Additionally, it seems likely that non-binary academics are not being fully represented by current statistics, highlighting a need for improved design in data collection around the personal characteristics of HE staff.
In response to the question around ethnicity, 93.5% of respondents identified as white, and 6.5% as BAME. According to Advance HE (2019) 9.8% of UK national HE staff identify as BAME, increasing to 29.4% for non-UK nationals. Data from HESA (2020) for 2018-19, which look at UK HE staff of all nationalities, report that a total of 15.4% of academic staff identify as BAME (black (1.9%), Asian (9.4%), mixed (2.1%), or other (2.1%)), dropping to 12% for non-academic staff (black (3.2%), Asian (6%), mixed (2%), or other (0.8%)). The results of this poll suggest that there is under-representation of BAME staff in EDI activities, however I urge caution on this due to the small sample size, as previous (much more rigorous) studies have highlighted the disproportionate burden of EDI activities on BAME faculty (e.g. Jimenez et al., 2019).
28.1% of respondents identified as LGBTQ+, and 71.9% as heterosexual. Data on sexual orientation in UK HE are limited, and Advance HE (2019) reports that only 52.1% of staff in institutions who returned statistics on this had provided the information when asked. Of staff in institutions who did return this data, 49% identified as heterosexual and a total of 3.2% identified as either bisexual, gay man, gay woman/lesbian, or other. This would suggest that there is likely a substantially disproportionate representation of LGBTQ+ staff and researchers in EDI-related activities in academia, while also highlighting a need to improve data collection related to sexuality in this context.
When asked about their role, 45.7% responded that they were an early career researcher (ECR), 34.6% lecturer/associate professor, 11.8% professor, and 7.9% technical/administrative staff. The Advance HE (2019) report states that in the 2017/18 academic year, 49.3% of all UK HE staff worked in academic roles, and 50.7% as professional and support staff. Across all subject areas, 9.9% of academic staff were listed as professor (90.1% non-professor). It is tricky to find information on what percentage of UK HE staff are ECRs (and I’m writing this relatively quickly!), however based on HESA (2020) data 23.4% of staff were on research-only contracts in 2018/19 (66% of whom were on fixed-term contracts). Although very difficult to draw meaningful comparisons regarding proportional representation here, it seems clear that ECRs are contributing substantially towards EDI activities, while professional and support staff do not engage with (or are not represented in) these activities at a proportionate level.
19.4% of respondents stated that they had a known disability, while 80.6% did not. Advance HE (2019) reported that 5.1% of all staff in UK HE identify as disabled (4.3% of academic staff and 6% of professional and support staff). Notably, disability disclosure rates in UK HE have doubled since 2007/08 when they were 2.8% and 2.2% for academic and professional and support staff respectively, suggesting that disabilities may still be under-reported in HE, but improving. Despite this apparent under-representation, the results of this poll suggest that people with disabilities in academia may be considerably more likely to contribute to EDI-facing activities than those without.
Unfortunately it is not possible to explore intersectionality here as there is no way to correlate individual responses to the different questions in the poll on Twitter, but I would very much like to see this investigated further in the future. I’m also reluctant to interpret the results in any more depth due to the statistics of (relatively) small numbers, but perhaps this can act as a very small springboard to encourage institutions and individuals to think more carefully about how staff are recruited onto committees, how the EDI activities of staff are counted in workload models, and how EDI activities are recognised during consideration for promotion or recruitment. I also haven’t touched on the reasons behind disproportionate representation, be that compulsory workload, expectations of others, or more personal drivers, however I invite the wider academic community to consider this, and consider the role that you can play in working towards an environment where the historically marginalised no longer have to bear the brunt of this “invisible labour”.
Caroline Clason, 9th June 2020
Advance HE, (2019), Equality in higher education: staff statistical report 2019, available at https://www.advance-he.ac.uk/knowledge-hub/equality-higher-education-statistical-report-2019, accessed 09/06/2020
HESA, (2020), Who’s working in HE?: Personal characteristics, available at https://www.hesa.ac.uk/data-and-analysis/staff/working-in-he/characteristics, accessed 09/06/2020
Jimenez, M.F., Laverty, T.M., Bombaci, S.P. et al., (2019), Underrepresented faculty play a disproportionate role in advancing diversity and inclusion, Nature Ecology & Evolution, 3, 1030–1033
Social Sciences Feminist Network Research Interest Group, (2017), The Burden of Invisible Work in Academia: Social Inequalities and Time Use in Five University Departments, Humboldt Journal of Social Relations, 39, 228-245
Over the last two weeks we have been running a flash poll to find out what the young people of the UK really think about the climate and nature emergencies ahead of the 2019 General Election. We wanted to learn about how these emergencies make young people feel, how hopeful they are that we can fix these problems, and who they believe holds the most responsibility for tackling the causes and impacts of climate and ecological change. Over the past year, thanks to the global climate protests, young people have begun to be listened to far more on the subject of climate change. And it is vital they are heard, since they are inheriting this issue but have a key role to play in solving it now and in the future. Many of the young people who responded to our poll are not of voting age. We hope that communicating the results helps to make their voices heard.
The results below reflect responses collected up to the 9th December 2019, but we will leave the poll open to continue to gather as much information as we can on the fears and hopes of the next generation about our changing climate and environment. We have also presented the results in a map, showing the the distribution of responses, and details of those responses, from as far north as Inverness and as far south as Cornwall: http://arcg.is/vynf4
Key results so far
As of midday on 9th December we had received 1758 responses to this flash poll from young people aged between 7 and 22+.
One of the strongest messages emerging from the response data is that young people believe governments have the biggest responsibility for tackling the climate and nature emergencies.
When asked to rank on a scale of 1 to 4 whether they believed that the global community will take action in time to avoid the worst effects of climate change, only 5% of the young people who responded were strongly confident that it was possible.
We also asked participants whether they felt that they themselves were doing enough to tackle the climate and nature emergencies, and asked the same questions about their schools, colleges, and universities; local communities; businesses; the UK government, and governments worldwide. The results for individuals, educational institutions, and communities present a mixed picture, perhaps reflective of how information is communicated to the public about what they can do to offset their personal environmental footprint. But respondents sent a clear message that they do not believe that businesses, the UK government, or governments across world are doing enough to tackle the climate and nature emergencies.
In addition to the responses described above, we also collected open responses to the following questions, represented below in the form of word clouds:
What do you understand by the term ‘climate emergency’?
What do you understand by the term ‘nature emergency’?
Add up to five words you think of when you think about the climate emergency.
Add up to five words you think of when you think about the nature emergency.
What is the ONE big thing you think the new Prime Minister should do to respond to the climate and nature emergencies?
Finally, we asked what the young people who responded, or their families, might do to help tackle the climate and nature emergencies…
We will conduct further analysis of the these qualitative responses in the coming weeks to evaluate the key feelings emerging from young people in the UK around the climate and nature emergencies.
Who are we?
We are Geographers For Life. We love and want to protect our planet, the people and wildlife on it. Whether you are a student, teacher, or an interested member of the public, our aim is to inspire, support and mobilise as many people as possible to take action to create a more beautiful and positive future.
We are teachers and academics working in geography at all levels from Primary to Higher Education:
Paul Chatterton (@PaulChatterton9 ) – Professor of Urban Futures at the University of Leeds
Caroline Clason (@Caroline_Clason) – Lecturer in Physical Geography at the University of Plymouth
Ben King (@benking01) – Churston Ferrers Grammar School, Torbay, Devon
Paula Owens (@Primageographer) – Teacher, mentor @LESSCO2Schools, visiting research fellow Canterbury Christ Church Uni.
Alan Parkinson (@GeoBlogs) – JVP of the Geographical Association, King’s Ely School
Daniel Raven-Ellison (@DanRavenEllison) – Explorer
Iain Stewart (@Profiainstewart) – Professor of Geoscience Communication at the University of Plymouth
You can follow us on our Twitter account @Geo4Life, and if you would like more information on the results of this poll, please contact us there, or via our personal Twitter accounts.
The Youth Climate Poll remains open for new responses, and can be found here: https://docs.google.com/forms/d/e/1FAIpQLSen_uaOKkdVKyOpPzWaXCbHnItOzbK3-ZDCalTUFMvJfM-XmQ/viewform
Please help to share this poll far and wide across the UK!
I recently conducted a simple Twitter poll to get a feel for what percentage of academics, including PhD students, have a parent or parents with a PhD. The tweet received a lot more attention than I expected, with just shy of 9500 votes, 249 shares, and 202 comments when the poll closed on 5th November 2019. The rationale for conducting this poll was that I had seen a number of tweets in recent months from current “1st generation” PhD students who felt they were at a disadvantage in comparison to their “2nd generation” peers. Some of these tweets were written in a very “us and them” tone, and suggested that 2nd generation PhD students simply didn’t have to deal with some of the struggles that 1st generation students have. A number of people also thought that as 1st generation PhD students they were in the minority.
The key result of the poll was that of academics who use Twitter, and who engaged with this poll, 12% have at least one parent with a PhD. This supports that 1st generation PhD students are in fact the clear majority, although this may vary substantially between countries and research disciplines. It was clear from reading the comments on the poll that the statistics here only tell one part of the story, so I conducted a simple qualitative analysis of the comments, drawing out some of the key themes emerging within the discussion:
- A number of 2nd generation respondees stated that they are aware that they have been privileged by having a parent(s) with a PhD/academic experience. Some respondees were speaking from the perspective of parents, and felt that their children had been privileged in comparison to others. This privilege can take the form of emotional support due to understanding of the world of academia, practical support in navigating the way things work, and mentorship in pursuing their education and academic career opportunities.
- Many other respondees stated that they don’t feel disadvantaged for being 1st generation academics, often due to support from other sources, and that once you’re doing a PhD the challenges faced are similar regardless of background. The exception to this might be economic challenges.
- The role of background more broadly, including socio-economic status, was felt by many to be as important, if not more important, than whether your parents have experience of academia.
- The role of university support services, effective supervision, and the importance of mentorship, were identified as being key factors in whether 1st and 2nd generation PhD students have similar experiences once they have registered onto a degree. (I would argue that mentorship is as important as you progress through an academic career as it is at the beginning!)
- Many of the comments posed questions around whether having an academic parents can also impact upon how likely people are to go on to work in academia/have a permanent post/get tenure. This is obviously way beyond the scope of this simple study, but is a point that would certainly be worth following up.
- Having a family member with a PhD may offer emotional support more readily than practical support due to changes in the education system/academia over time, and disparity between subject areas. Many people (and I include myself here) also felt that having supportive parents in general is more important than whether they have an academic background.
- Assuming that those with academic parents are privileged also assumes that they are still in contact with their parents, that their parents are still alive, and that their parents have had a similar enough experience to offer valuable support. A number of respondees commented on how these assumptions over-simplify the reality of family relationships.
- A number of people also argued that coming from an academic family may also put people off going into academia in the first place!
- Many respondees noted that having parents with any level of higher education is perhaps as important as whether they have a PhD. This ties into other comments made which suggested that going to university in the first place and navigating life an undergraduate was the major hurdle, and that going onto to postgraduate study then felt much more possible.
- The value of different levels of education, and how common it was to study at these different levels, has changed over time. It was perhaps also more common in the past for people to work in academic roles without having a PhD. This viewpoint was shared by many respondees.
- Respondees felt that it would be useful to also ask about whether other family members (aunts, uncles, grandparents etc) have studied at PhD level, and to ask respondents to state whether their parents have obtained other undergraduate and/or postgraduate qualifications. The issue of gender may also play a role as PhDs were much less common amongst women in previous generations.
- As more and more people are awarded PhDs, questions were posed around whether the children of current academics were to go on to do a PhD would they still be viewed by their peers as being “privileged”?
- Finally, respondees recognised that academia is a different beast to what it was in previous decades, and that the pressures faced with regards to research funding, publication, promotion etc are likely much different to what our parents may have experienced.
While this was clearly an over-simplified poll (put together at 8am on a Sunday morning to settle a nagging interest of mine!) and doesn’t allow for breakdown of responses by region, age, research field etc, I think the discussion around the poll has been really useful and eye-opening, with clear support for conducting a more detailed survey around this topic. A task for another day perhaps! As food for thought for now, are academic families really that 2nd generation PhD unit, or do they perhaps look more like this?…
Caroline Clason, 5th November 2019
It’s been (somewhat unbelievably) seven months since my last proper blog post in October 2018, which I wrote after my final session of radiotherapy. At that point I had grand plans of being back at work full-time before Christmas and had hoped to be training hard for the remains of the bouldering season. The reality of recovery, medication side effects and fatigue meant that I actually went back to work in January and was only able to work part-time hours up until a few weeks ago. In terms of climbing I’ve been trying my best to just enjoy being able to move with minimal pain now that my muscles are easing up a little post-surgery/radiotherapy, but I’ll admit to also being frustrated at my slow progress and lack of strength. This experience has taught me an important lesson about managing expectations (my own and those of others), but I know that having taken time out to recover, both physically and mentally, means I’m much less likely to reach “burn out” at the end of term this year, as is always a danger in academia.
The last few months have had plenty of challenges, but it certainly hasn’t been all bad… Three days after returning to work in January I found out that I had been successful in my first standard grant application as PI. The project is a UK-Peru collaboration looking at the impact of the changing role of glaciers for downstream water resources in the Peruvian Andes, funded by the Newton Fund through NERC, and an opportunity for me to have a mini glaciology research group here at Plymouth when my new Research Fellow starts work on the project in the summer! I wrote in a previous blog post that I had been heartbroken when I thought I’d have to give up on applying for this grant due to my surgery and treatment, but my amazing collaborators decided to crack on with writing it without me. I really am hugely indebted to them for their support in getting the application submitted, and I’m very much looking forward to working on this project over the next few years! The main challenge work-wise now is to find the time to get back into the research I enjoy so much, as reduced hours coupled with a busy semester of teaching and playing catch-up has left very little time for this since I got back to work. That said, I did manage a short trip to Vienna for EGU where I presented ongoing research on the presence of contaminants from nuclear fallout on the surface of glaciers around the world, and took part in my first press conference. These little work highlights have been a welcome distraction in a year that has been incredibly challenging.
I’m still struggling with the side effects of hormone treatment, including night sweats, joint pain, muscle cramps, and digestive problems, and have developed some hip and back issues that no amount of yoga seems to help, but on the whole I feel like I have more energy with each week that goes by. I reached a personal recovery milestone in April by climbing South Ridge Direct on Cir Mhor, Arran, a “Hard Rock” tick and a route that has been on my wish list for some time. Before heading to Arran Nick and I enjoyed a week of idyllic climbing in a sunny Lake District, getting some much needed trad climbing practise in since my treatment had kept us away from it for too long. We baked while climbing on warm rock, cooled our feet in mountain streams, and remembered just how good trad climbing can be. The day we climbed Cir Mhor was long and tiring, but more than worth a bit of suffering for the quality climbing and amazing views down the stunning glaciated valley of Glen Rosa. We left the campsite at 7:40am to start the long walk up the glen to the base of the climb, then swapped leads up the 400m route with all the efficiency of two climbers who clearly spend most of their time bouldering! We topped out to a full-on gale that had our ropes billowing out into mid-air, forcing only a short summit visit and a hasty descent, and got back to our tent at 9:30pm for beers and camping stove curry. I’m so happy that my body held up for long enough to let me climb this route only nine months after my breast cancer diagnosis, and I’m really pleased to have raised over £1100 for Climbers Against Cancer and given something back to the cancer research community in the process.
Looking ahead, I’ve got plenty of marking and admin to keep me busy, and a lot of paper-writing and new research to catch-up on, but I’m riding on a high from teaching our students about glacial processes during an excellent recent field trip to Iceland (always a highlight of the year). As for the climbing, it’s less about 400 m routes and more about 4 m boulders as I’m off to enjoy some bouldering in Fontainebleau next week. It’s only a couple of months until my one year “cancerversary”, when I’ll be hoping for clear scans, although I know the anxiety around recurrence won’t disappear completely. I’m also going to have to be careful about what commitments and travel I take on over the coming months so I don’t exceed my “new normal” in terms of capacity and energy, but here’s hoping the next year will be challenging for all the right reasons!
21st May 2019
It’s been far too long since my last blog post, and as I’m typing this from my hotel room in Vienna at 23:20 on a Sunday night I’m not going to make this one very long. For those who aren’t at EGU this year, can’t make it along to see my poster, or if you’re just interested in ice, climate, and the environment, here’s a copy of my poster for you to peruse at your leisure!
I’m so excited to be back in Austria for EGU after what has been a really rough year, but more about that in a future post. For the moment I’m just living it up in what might be the funkiest hotel room I’ve ever stayed in (complete with guitar amp, massive shower, and rock star mirror) and looking forward to talking science followed by that first sip of weissbier with friends tomorrow!
Today I completed my 18th and final session of radiotherapy, a little over four months since discovering my tumour, and three months since receiving my diagnosis. I am so happy that this stage of my treatment is finally over. Another milestone reached and no more daily visits to hospital – yay! Since August I’ve had a lumpectomy and sentinel node biopsy (breast conserving surgery and lymph nodes removed to check for cancer spread), IVF treatment to preserve fertility (traumatic enough cancer aside!), and four weeks of daily radiotherapy, resulting in at least 35 trips back and forward to hospital. Although I didn’t need chemotherapy, these past few months have really taken their toll both physically and mentally, and there have been days where I didn’t even have the energy to eat. While I realise that I have been lucky to escape chemotherapy, I’ve been really down about being made to feel by some that my cancer experience has somehow been relatively “easy”. These feelings recently culminated in breaking down while talking to a Macmillan support nurse because I felt I wasn’t being strong enough given my “easy ride”; something I’m now starting to realise is a load of rubbish. Radiotherapy has left me with fatigue to a degree I’ve never experienced before, a nasty, ugly skin reaction, and sometimes severe pains in my chest and arm that keep me awake at night. If you’re reading this as someone currently going through treatment, please don’t beat yourself up if you find radiotherapy difficult; I’m usually a sporty type and was out of breath with chest pains while walking along a flat track last weekend! This whole process has been a revelation for me in quite how individualised treatment plans are in order to meet the needs and tolerances of different patients, which extends into mental health as well as physical.
Having now completed these key stages in my treatment, I’d love to say that it’s over and I can move on… In reality I’ve been told to expect the skin reaction and fatigue from radiotherapy to continue and perhaps even get worse for at least a couple of weeks, and I’m also facing at least ten years of endocrine therapy (hormone treatment) which began two weeks ago with the injection of an implant called Zoladex under the skin of my tummy. This drug will essentially shut down my ovaries and put me into an early, and hopefully temporary menopause, and I’ll have these injections every four weeks for as long as I need hormone treatment. I’ll also be taking daily medication in the form of aromatase inhibitors to further reduce oestrogen production in my body, starving any remaining cancer cells of food for growth, with the aim of preventing a recurrence either in the same breast or in another part of my body. Finally, as this lack of oestrogen might cause a reduction in my bone density, I’ll be having drip infusions of zoledronic acid every six months for the next three years to try to minimise this impact. Those of you who know me will understand why I’m finding the thought of this particular side effect quite stressful; I desperately don’t want my treatment to impact my ability to enjoy sport, not to mention my quality of life in general. The hormone treatment will also likely result in other side effects which I won’t list here, but might report back on after some time has passed.
All that said, it’s not all doom and gloom! While greatly reduced in number and intensity, I have managed to enjoy some climbing sessions both indoors and outdoors during my treatment, including exploring some fantastic new places like Rubicon in the Peak District and Honeybag Tor on Dartmoor. Physical activity is something I still frequently crave, even if I’m often too tired to do the things I’d like to, or at the standard I’m used to doing them. The same can’t really be said for intellectual activities unfortunately, as I’m finding that fatigue, anxiety and pain have left me unable to concentrate on tasks that involve any real thought. The plans I had initially to keep working on my research and manuscript drafts while off work have gone solidly out the window in favour of daily afternoon naps. Despite not being able to perform at even a fraction of my best, staying active really is keeping me sane, and I’d encourage anyone undergoing cancer treatment to do whatever you can to stay happy and healthy, whether that’s a 5k run or sitting in the park. I make sure to get fresh air in one form or another every day, escape the urban environment when I can, and keep plugging away at some easy climbing in the hope that my muscles won’t wither away too much while I’m watching every drama series Netflix has to offer. I enjoy seeing how much stronger my friends have become when I visit the climbing wall, but will admit to sometimes feeling left behind and like a bit of a weakling. Hopefully I’ll catch up with them again soon!… I’ve also found more time to enjoy a good book, catch up with friends over a cuppa, make new friends and get involved in a new community, and I’ve even started knitting!
As for the near future, I can now finally look forward to escaping the shackles of frequent hospital visits! To make up for the recent lack of adventure in my life, and the summer holidays that weren’t to be, I’ll be heading north with my lovely partner Nick to enjoy the Kendal Mountain Festival and (fingers crossed) some Lake District rock in a couple of weeks. After this much needed break I’ll begin easing myself back into work and my “new normal”, whatever that might look like. Hopefully a better work-life balance as a starting point, and with a bit of luck no more sodding hospital visits!
23rd October 2018
The past few weeks have been a whole world of crazy. Individual days have felt like an eternity at times, in no small part down to the stress of waiting to meet my oncologist for the first time and find out what lies ahead. It was four weeks post-surgery when I could finally climb again (yay!) and a few days later when I was given my treatment plan. Knowing that chemotherapy is recommended to quite a large proportion of young women with breast cancer I had prepared myself for being told that chemo would be next on my agenda, but that didn’t happen. Instead, when I met my oncologist she told me that the risks were larger than the reward in my case. I went through so many emotions that day, but relief, guilt, and uncertainty were by far the most prominent. Relief for obvious reasons; guilt because I felt like I was cheating the system by not having to go through what so many others do; and uncertainty because in my overwhelmed state I forgot to ask what the benefit (if any) of chemotherapy would have been for my long-term outlook. I want to do whatever it takes to live a long life, and in good health, so not having chemo is, in some ways, actually a little scary… Have I covered all my bases? Will my prognosis be the best it possible can be? Ultimately I’m putting my trust in the experts now and hoping it won’t come back.
Looking ahead, I’ll be having four weeks of radiotherapy likely starting at some point this month, followed by at least ten years of hormone therapy since my greedy little cancer feeds on hormones. While the side effects of radiotherapy (most commonly skin problems and fatigue) are nothing by comparison to chemo, I’ll be taking time out from work to focus on looking after myself. A dose of fresher’s flu probably wouldn’t be all that helpful during treatment! My main worries moving forward, however, are the side effects of hormone therapy. I’ll be having monthly injections of a drug called Zoladex, and taking a pill called Aromasin daily. This medication can have side effects including hot flushes, joint pain, mood changes, and a decrease in bone density. As an active, sporty person the latter is a particularly scary proposition, so I hope that my oncology team will be able to offer some options to offset damage caused to my bones. While not needing chemo is certainly a relief, how my body will cope with these other treatments in the short and long-term plays heavily on my mind.
The other perhaps unexpected side effect of cancer treatment, which I touched upon briefly in my last blog post, is changes in fertility. Had I needed chemotherapy it could have damaged my fertility irreparably; this is thankfully no longer an issue. The remaining worry is that after ten years of hormone treatment I might struggle to get pregnant naturally. Women in their forties often have more difficulty in getting pregnant due to a decrease in egg number and quality over time; not to mention any unforeseen complications from cancer treatment, or the possibility of cancer recurrence. To make sure I have a back-up plan I’ve spent the last couple of weeks going through ovarian stimulation and IVF, which has thankfully resulted in the successful freezing of embryos for future use should I ever need them. I can now completely sympathise with other women who need to go through IVF for one reason or another; it is not the most pleasant process! Multiple daily self-injections, some less-than-dignified appointments at the clinic, a not entirely unpleasant dose of sedatives and fentanyl during a slightly painful egg retrieval procedure, followed by the worst bloating I have ever experienced. I put on 1.5 kg and 5 inches round my waist due to fluid build-up following egg collection, and I’m writing this from the sofa two days after the procedure, hoping that I won’t have to wait much longer for some relief. Perhaps the most frustrating thing for me is that I now have another two week wait until I can climb again, to avoid literally getting my ovaries in a twist!
The last thing I want to touch upon today is support networks and quite how important they are… The Mustard Tree Macmillan Cancer Support Centre, and particularly the wonderful Becky who spent the best part of two hours with me when I finally broke during a visit to the fertility clinic last week, walking through Derriford hospital in a flood of tears that wouldn’t stop. My fellow cancer patients on the Breast Cancer Care forum who remember which days I have appointments, ask how I’m doing, and talk just the right amount of nonsense. And finally the online community who make me laugh, cry and feel like I’m not alone. I’m absolutely heartbroken to have read while I’m writing this that the beautiful Rachael Bland has died aged 40 from breast cancer. The contribution she made to talking about cancer openly and honestly has been incredible, and I am so grateful for the support she has given to me and so many others through presenting the “You, Me and the Big C” podcast. If you haven’t listened to it yet, why not give it a go?
5th September 2018
It’s been one month since I was diagnosed with breast cancer, and a little over two weeks since I had an operation to remove the tumour and test lymph nodes under my arm for cancerous cells. After an initially groggy and uncomfortable first few days of recovery I’m slowly starting to feel like myself again. Removing the dressings was the most difficult part of the past two weeks, and initially a shock, but as the wounds heal I’m increasingly happy with how they look (nothing like the images I had in mind when the surgeon told me before the operation that I would unfortunately have a “visual deformity”). My only real gripe is that I have a blue-stained nipple due to injection of dye during surgery, which is fading VERY slowly, and has led to some friends giving me the affectionate nickname of Blue Tit!
After a two week wait for post-op results I was finally given the good news that my lymph nodes are clear and my consultant is confident the full tumour was removed during surgery. This has been a massive relief, but unfortunately I still don’t know whether I’ll need to go through chemotherapy, since more aggressive treatment is sometimes recommended for younger women, and I have another wait ahead to be referred to oncology to receive my treatment plan. To make sure that any previously undetected cancerous cells are destroyed, and to reduce my risk of this particular cancer coming back, I know I will have a three week course of radiotherapy to look forward to, followed by 5 to 10 years of hormone treatment aka drug-induced early menopause (yay!). I’m also waiting to be tested for the BRCA gene mutation which will give me an idea of whether I have a significantly higher-than-average risk of breast and ovarian cancer.
An unexpected but very serious component of my cancer story so far has involved making the decision to go through a cycle of fertility treatment and embryo freezing to ensure I have some chance of having children, should I want to, once my treatment is over. If I need chemo there’s a strong possibility I could end up completely infertile, and even without chemo I will be older and could struggle to get pregnant naturally by the time hormone therapy is complete. There’s been so much to think about in terms of both fertility and cancer treatment that I’ve had little room in my head for anything else; it’s hard to believe I only discovered the relatively small, but life-altering lump only two months ago. While I’m not looking forward to the self-injections over the next two weeks, or having ovaries the size of satsumas (a very pleasant description from the nurse!), I am incredibly grateful that fertility treatment is offered free of charge via the NHS for young cancer patients.
Since I’m healing well from the operation and have a few weeks before chemo/radiotherapy starts, I’ve started working again full time in the hope that I can find enough headspace and distractions to concentrate on anything other than the C-word. In my previous post I mentioned that I was having to give up a funding proposal to start a new research project in Peru. I’m very happy to report that my incredible colleagues and collaborators in the UK and Peru decided to crack on with it anyway, and made a herculean effort to pick up where I left off and finish the application while I was out of action. Who knows whether we’ll be successful (I certainly hope so!), but I’ll be forever grateful for that support at a time where I felt heartbroken to have to give up on my research. Only time will tell how many of my normal academic duties will be possible over the next few months, but for now I am massively over resting (dying of boredom) at home.
I have a house that smells of flowers and contains enough chocolate to last until the end of the year, and more support from friends, family and colleagues than I know what to do with. I’ve also made friends via social media and the breast cancer care forum who provide an invaluable support network I had never imagined would come to be so important. I woke up around 4am today with the C-word on my mind, and haven’t been able to shake it for most of the day, but if nothing else, writing this has helped me to remember that it really isn’t all bad, and will be even better when I’m back on the climbing wall in a fortnight!
18th August 2018