Date of prep: December 2020
Prescribing information and
adverse events reporting
For healthcare professionals only
Recently I have been reflecting on the language surrounding cancer and also on our compassion for others and ourselves and I want to share some stories and reflections of my own and others’ experiences in order to challenge some common misperceptions about recovery from cancer (and indeed many other illnesses).
In October last year, Pharmacy in Practice published my blog about my experiences of being a patient with cancer. Since then, I’m pleased to say my emotional recovery has continued (albeit with a bit of a blip in January) although I’m still not finished with reconstruction. I’m now three years ‘cancer free’ and it occurred to me recently that actually, I, and everyone I know who has had a diagnosis of cancer, will never really be cancer free.
The diagnosis of cancer for most people is a shocking and traumatic event; no matter how prepared you are for the news; it is like a bolt from the blue. In my previous blog, I described the emotions of shock, disbelief, anger and fear. Friends that I speak with all vividly remember the moment that they were told they had cancer. Very quickly after that you are into the rollercoaster of treatments and tests and most people, quite naturally, enter survival mode. As treatment finishes and you are ‘cast loose’ back into the world of ‘normality’, the accumulated emotional issues hit, often just at the point when many people are returning to work. The physical effects and after effects of treatment and the whole experience, such as fatigue, slower mental processes, less stamina or energy, emotional instability and physical pain and mobility can also be quite debilitating at this stage and, for many, will continue for a long time, if not forever.
In reality no one who has had cancer will ever be cancer free; we live daily with the reminder either via surgery or radiotherapy scars, or in one friend’s case melanoma due to radiotherapy, daily medication to prevent recurrence or support our mental health, mobility issues due to the after-effects of chemotherapy, stomas and in my case a breast prosthesis and post-surgery bra, which makes me feel like a grandmother! Whilst over time, cancer is not always at the front of my thoughts, my body had let me down badly once before and no one can ever guarantee it will never come back; any ache or pain or lump revives the fear. I even struggle to believe the outcome of objective tests such as scans, since many of my original ones were false negative. Oh and don’t get me started on ‘scanxiety’ which is a much-documented consequence of follow up tests and monitoring; the experience brings all the emotions and fear back and the wait for an outcome is tortuous. Then you walk back into the clinic (and perhaps even the room) where you were given your diagnosis and all those emotions come flooding back too!
This blog is to recount some of my own and others’ experiences in order to raise awareness of what it is really like to recover from cancer and to encourage us all to be compassionate with those around us as well as ourselves.
The photo at the top of this blog is me with my wonderful students, just one month after returning to work full-time. I have shared it as an example of how people can judge on the basis of physical appearance. I look really well in this picture, which I shared on Twitter, but in reality, I was a mess inside. I had foolishly returned to work and full responsibilities without a phased return after my second period of absence following implant surgery. I was feeling guilty that others had had to pick up extra work in my extended absence and the start of the semester when I returned made sense to pick back up my responsibilities. No one challenged me on the sensibility of this. In reality it took several difficult months for me and others in the team for me to be able to start to function in any normal way (more on normal later!) My advice for anyone returning to work, and anyone supporting others in returning to work after a period of absence is to consider carefully the reality of physical, mental and emotional capabilities and not feel guilty for not being quite ready to perform fully. Even if someone looks really well, as I did, don’t assume they are back to full health and please ensure they are proactively supported. I didn’t want to ask for help as I was already feeling very vulnerable and had lost loads of self-confidence; asking for help would have been yet another ‘failure’! I needed those around me to be that voice of reason and show compassion in how I was supported. Much later on, a comment was made to me about how others couldn’t understand how I was still recovering when I was posting pictures like that on Twitter!! For me this shows a complete lack of insight into the recovery from serious and life-threatening illness … hence this blog!
I believe we all have a responsibility to try to see things from others’ perspectives and the only way to achieve that is to ask. Most of my colleagues didn’t ask how I was doing, partly I think because I had been very private about my diagnosis before going off for the mastectomy (I honestly couldn’t cope with my own emotional reactions, never mind anyone else’s!) but also because I have a very strong professional mask and looked and behaved ok; I also believe people didn’t want to intrude. In the circumstance where a colleague has been having a hard time, please take the time to ask how they are doing. If I hadn’t wanted to talk, I would have said ‘I appreciate you asking but if its ok I don’t want to talk right now’. Now when people ask how I am (in a social ‘how are you?’ way) I don’t say ‘fine’ if I’m not but if I don’t feel I want to bare my soul, I say that I’m just having a difficult time right now but am getting there and thank the person for their concern. It has taken quite some time for me to have the courage to do that and to challenge our very British social norms! Sometimes all a person needs is a smile and a ‘that’s rubbish’ type comment to feel supported.
The other issue which can affect many people (and seriously impacted on me) is a lack of confidence. As a result of this and the other emotional difficulties I was dealing with, I retreated slightly into myself which had a knock on effect of others retreating from me. In the early days of my return to work, I was mentally and emotionally drained by lunchtime and as a result, struggled to interact with others. This was really difficult for those around me; they didn’t know whether to ask me about work issues or ask me to do things so they didn’t and then I felt even more ‘irrelevant’ and excluded which fueled my lack of confidence. I recognise that this was my own emotional vulnerability and others were perhaps attempting to be caring by not putting pressure on me but I would have appreciated the choice and the opportunity to discuss! My advice is to try to have that honest and compassionate conversation with colleagues and ask them how they want to be treated in the workplace following a period of absence.
I recently had the opportunity to present a patient’s perspective during a round table discussion of healthcare with MSPs and MPs. Prior to going I ‘surveyed’ my post-cancer friends about the issues they wanted me to raise. Overwhelmingly the main concern that they all had was emotional support; particularly at that point when treatment finished. I’m personally not convinced that the NHS is best placed to offer that and charities such as Maggie’s Centres have the expertise to do so. The problem is referral pathways; not one of my healthcare professionals (who were all amazing!) mentioned charity support or explained what Maggie’s and other charities could offer. We need to ensure that people are aware of the support available to them (very often via charities) and the pharmacy team is really well placed to signpost to these.
Back to the concept of ‘normal’! One of the significant issues which I have been dealing with is that I have changed mentally and physically since diagnosis and treatment. I have put on significant weight because of the tamoxifen and drug-induced early menopause, have less energy than I used to and definitely have had slower mental processes like decision-making. Issues and crises which I used to thrive on, have drained me significantly over the past couple of years. I believe I have still done an excellent job but that has often been at a personal cost. I am struggling to come to acceptance of my new normality but am working hard on that. I recently received support via a new course at the local Maggie’s Centre on body image and transition where we focused particularly on compassion focused therapy. Paul Gilbert writes extensively on this (see below) and describes compassion as a variety of attributes and skills. He writes about attributes such as motivation for being compassionate, sensitivity, sympathy, tolerance of emotions and distress, empathy and being non-condemning and non-judging. In addition, we may have or can develop skills of attention, thinking and reasoning compassionately, compassionate and rational behaviour using feelings of warmth, support and kindness. There were some really powerful messages which have stuck with me including; it’s not my fault for getting cancer (that’s not too difficult to accept for me) but it’s also not my fault how I have reacted emotionally and mentally (much harder to accept). Our thoughts and emotions are the product of our many things including history, culture, upbringing and experiences and we did not choose to have a brain like this! What we can do is step back and notice how the process by which this happens (being mindful) and start to take more responsibility for our minds. For further information on compassion-based therapy, see the resources below.
Following the course, five of us post-cancer chums went to John Lewis for a style makeover! I love clothes (and shoes, of course!) but had completely lost confidence and hate my new body shape and size. The stylists were wonderful and gently challenged all of us into different colours and styles. The experience has been a massive confidence boost to all of us in different ways and I am amazed how it has helped my acceptance of my new body!
My plea to you is to try to understand your colleagues/friends/loved ones’ perspective (by asking what matters to them), show compassion to others and learn to be compassionate with yourself (often much harder to achieve!)
Writing this article has again helped contribute to the healing process so thank you for being part of that. Thank you for reading!
For further information on the support provided by Maggie’s Centre’s see https://www.maggiescentres.org
Paul Gilbert (2009) The compassionate mind. London: Constable Robinson and USA: New Harbinger.
… as well as many other titles.
Compassionate Mind Foundation. Established by Gilbert and colleagues. https://compassionatemind.co.uk
Pharmacy in Practice is a UK pharmacy publication with its roots in Scotland.