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Cancer and mental health

Once again, I’ve proven that consistency is not my strong point. I had planned to write another blog post some weeks back following my one year post-treatment appointment. However events took a bit of an unexpected turn…

The last few months have been really tough and the last few weeks have been hell. This appointment had been a long time coming; I had a blood test and a CT scan in preparation and was hoping to be given the news that one year on from completing treatment I was cancer free. Understandably, in the run up to this appointment I have been incredibly anxious, but my anxiety started to really get out of hand; I was vomiting most mornings, had a resting heart rate of over 90 consistently, high blood pressure, struggling to sleep, flashbacks, experiencing social anxiety and difficulty leaving the house, lack of motivation, intense food cravings and binge eating, constantly feeling overwhelmed, tired and on the brink of tears. All the while, I was studying, sitting an exam and going into placement full time and generally trying to convince the world and myself that I was fine.

Three weeks ago I had my appointment and instead of being told good news, I was told that my CT scan hadn’t been reviewed and that on examination, there was a red area on my cervix that wasn’t there previously which would require further investigation…holy fuck! After a brief meltdown (which mainly involved me ugly crying on my lovely Cancer Nurse Specialist’s shoulder) we discussed my anxiety. Basically, what I am experiencing is Post Traumatic Stress Disorder. It feels odd even saying that because of course, we usually relate PTSD to people who work in emergency services or the military – who witness awful things daily, or child or adult victims of violent or sexual attacks/abuse, not people who have/had cancer. However, the T in PTSD can actually refer to any traumatic event or experience; one persons PTSD is not necessarily the same as someone elses, and nobody should feel that their trauma is lesser or doesn’t entitle them to feel the way they do…it’s not a competition.

Following that news, I had an MRI and today I met with my previous surgical gynaeoncologist. We discussed why I was there and what the plan was, he said that he would examine me and that if a biopsy was needed it would need to be done under general anaesthetic, not in clinic. Yesterday was leg day at the gym; which was not the wisest choice the day before having to lie with my legs in stirrups for 15 minutes…fortunately though, it was worth it because the red looking area shows no indication of abnormal cells and both the CT and MRI scans look normal. Which means I can officially say I am 1 year cancer free!

Unfortuantely, my mental health is a little more complex and precarious. Just because I have good news now, doesn’t instantly erase the anxiety. I still face years of check ups, scans, blood tests (which involves dealing with my new phobia of being cannulated, following an incident where a nurse pushed a flush through a cannula that wasn’t in my vein) and worry about recurrence everytime my lower back aches or I get a chesty cough. I ended up cutting my placement short because it was just too emotionally exhausting to go in and care for other people during that time and thankfully my placement team were really supportive of that. I have joined a gym in an attempt to help me burn off some excess cortisol (stress hormone). I am also in the process of arranging counselling and cognitive behavioural therapy, because a) I don’t want to feel like this and b) I don’t want to start my nursing career with a lot of my own baggage, that has the potential to affect the care I give other people. Nursing is wonderful, but more stressful than most people can imagine; taking care of yourself is fundamental to being a good nurse.

Ultimately, I am very relieved and pleased that I can officially claim to be cancer free, but I am aware that the scars cancer has left me with are far greater than the visible ones on my belly and that recovery is long, complex and challenging.

Thank you image, 1 year since diagnosis

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1 year on from diagnosis – My life won’t ever be the same again but there is lots to be thankful for

So it’s official, I’m the world’s worst blogger, even 1 year after diagnosis! The last few months have been pretty tough and whilst I have had plenty of ideas, I really couldn’t get the motivation together to write anything.

It’s actually been almost 14 months since my diagnosis and I’m still in limbo really; I don’t have any big all clear news so I’m left just waiting and wondering. My consultant has said there is no point in doing any scans at this stage, but I am due to have my first post-treatment colposcopy in January and from there I have years of regular check-ups ahead. I have been asked repeatedly am I all better now and whilst I have no doubt this comes from a place of kindness and genuine concern for my wellbeing, it can be frustrating. Partly because I don’t know the answer to the question, but mostly because even if I get an all clear, I won’t ever be all better! My body has been cut and mutilated in the last 1 year, I have been exposed to radiation and had cytotoxic chemicals pumped through my veins…all this was of course for the purpose of treating me and I’m immensely grateful for it all, but my body won’t ever be the same again. I am unable to have children and have to take hormone replacement therapy for the next 20 years just to keep my body functioning normally, I have to use dilators 3 times a week for the rest of my life otherwise I will develop vaginal stenosis (where your vagina essentially closes up…for reals) and the treatment to destroy cancer cells actually increases the risk of developing other cancers! Beyond the physical changes there are all the psychological effects; depression, anxiety, anger and frustration. I’m not angry at having cancer per se but about the impact it has had on my life. I was forced to suspend my studies by my university and now I’m left watching all of my friends carry on and (soon to) graduate and qualify whilst I still have a whole year to do. I’m so proud of them all, but I’m frustrated I won’t be graduating with them, particularly because my journey into nursing has been LONG with lots of hurdles!

Having said all of that, I have so much to be thankful for. For starters, there are no words to express how grateful I am for the NHS; it’s no exaggeration to say that the National Health Service and the incredible people who work for it saved my life these last 16 months and unlike so many others I haven’t once had to think about how I’m going to pay for my treatment. On social media I see young women in my situation or similar setting up crowd funding pages because their health insurance doesn’t cover all of their medical expenses and they have no way of paying the huge bills. Imagine having to make the choice to refuse treatment that might save your life because you can’t afford it. So many of us take our public health system for granted because we have never experienced anything different, but it is invaluable. So, next time you feel like moaning about waiting times in A&E, or having had your elective surgery postponed, or how short staffed they seem on the ward your relative is staying on, think about how much worse it could be. The NHS is the lifeblood of the UK and it’s currently being starved. This blog isn’t about politics so I will try not to go off on a tangent, but there is no escaping that the current state of the NHS and its rather precarious looking future is political…something to think about next time you vote!

In addition to the NHS, I have so many people in my life that have helped me out immeasurably over the last 1 year or so and whilst I like to think I can do anything on my own (because I’m fiercely independent and stubborn af), my life would have been a lot harder without you all. So, to my darling friends, Ciara for coming with me to the appointment where I got my diagnosis, for always being available to talk things through and for the red wine (it’s full of antioxidants don’t you know) and drunken Irish singing, Harry for coming with me to my first scan, for taking me to see Jezza and generally being my all round political ally, Pamela for the hugs, distractions, endless chats about food (what else) and for putting up with me letting waifs and strays stay in our flat, Luke and Niall for the presents, presence, hospitality and for never looking at me like I’m a mad woman during our drunken ‘philosophical’ chats, Ruth for the beerz and bantz, for coming all the way from Oxford to keep me company and for getting a piercing on my behalf when the nurse said I couldn’t, Hannah for the postcard, chats and ‘alternative medicine’, Naomi for 30 years of friendship, Phil for the flowers and fun and for literally not batting an eyelid when I took out months of built up anger on you on a night out (I was vile, I’m sorry), Grace for the yogic light, laughs and bath shot requests, Elise and Lottie for the updates and positive vibes, Tate for the haircut, straight talking and kind messages despite having so much on your plate, Jo for your awesome sense of humour, for bringing your gorgeous babies to see me and buying me vegan treats, David for setting up this page and giving me a gentle shove to get back to blogging, Abi for the postcards and jokes, Ness for the lifts, gifts and company, Liz for new friendship and for tolerating my terrible text response time, all the friends who sent me kind messages, prayers, good thoughts, positive vibes, healing light and offers of support, reiki, lifts, coffee, company etc. and all my new online friends; strong, brave women (and the odd man) who are boldly sharing their experience with the world (via social media) and who offer a network of solidarity and shared experience.

Then there is my family…I’m blessed with a huge extended family and whilst we aren’t the sort of family that is all up in each other’s business all the time, when needed everyone rallies around. First, and most importantly to my brilliant mum, you somehow managed to hold down your very stressful job whilst driving me to the hospital EVERY SINGLE DAY for my radiotherapy and chemotherapy. The journey was an absolute fucker; because of roadworks we had to take the rural route and it was a 3 hour around trip each day. Plus, you had to listen to me moaning about every bump in the road every bloody day! You went out and bought whatever weird thing I felt like eating and never complained once when I then felt utterly chunderific just looking at said craving, you put up with my horrendously bad moods and sat freezing in the car because the hot flushes and nausea meant I needed the air con on full blast and you held it all together because you are strong as hell. Thank you Ma. To Joseph for being strong and dependable, for coming to sit and wait with me and buying me cake when I had my first op, for agreeing not to cook the roast potatoes in goose fat (I know that was tough), for lending me money and paying my rent, Louis for the presents, messages and post-op visit, for not freaking out and for the booze fueled game tournaments. To San for the gifts, for letting me (and the rest of the clan) visit all the bloody time and for making me congee. To Chloe for the presents, flowers and beautiful letters, to Chris and Sarah who sent me money every month to help me pay rent and to all my aunts, uncles and cousins who sent me money, flowers, cards, messages, chocolates, knitting kits and afternoon tea, who gave me lifts and who respected my wishes not to have visitors during treatment (it wasn’t that I didn’t want to see you, rather I didn’t want you to see me like that…I HATE being the patient!) Thank you so much each and every one of you over the last 1 year, I have no idea how I would have managed without your generosity and kindness. Best family in the world during this 1 year!

Thank you to those who recommended Penny Brohn and those who have offered to help me reach more people with my blog and social media and if there is anyone who I haven’t mentioned, rest assured your gesture did not go unnoticed and I am immensely grateful.

Read my first ever post here.

Blog image for Penny Brohn Article

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Penny Brohn, The Bristol Whole Life Approach, healing, recovery and moving forward from my cervical cancer diagnosis and treatment

It has been months since my last post which is primarily because during my treatment I felt so completely awful. As such I really needed to just focus inwards, on taking care of my self and that meant shutting off from everything else for a while.

However, it has now been almost 10 weeks since I completed my course of chemo and radiotherapy and I’m feeling really good: not just because the side effects have passed (there was a time when I thought I might never stop vomiting) but because I’m beginning to move forward and take back control over my life and my body. This feeling of empowerment has developed following attending a ‘Living well with the impact of cancer’ course at Penny Brohn UK, where I learnt the foundations of The Bristol Whole Life Approach and began to develop the tools to take ownership of my health and wellbeing.

The organisation was founded by Penny Brohn, who was diagnosed with breast cancer in 1979 and quickly came to the realisation that she needed more than just treatment and the associated medical care, rather that she needed to attend to her mind, body, spirit and emotions in equal measure. In 1983, with the help of her close friend Pat Pilkington she opened The Bristol Cancer Help Centre. At the time, this holistic approach was not widely acknowledged by the medical profession. However, since then healthcare and healthcare professionals have come to recognise that health and wellbeing are about far more than just the body and that a person living with cancer can do a great deal to help themselves. Since those humble beginnings and thanks to Penny Brohn and Pat Pilkington, Penny Brohn UK is now nationally recognised in the field of integrative medicine and has enriched the lives of thousands of people living with and beyond cancer.

The Bristol Whole Life Approach is at the core of the work at Penny Brohn. Building resilience into everyday life is central to this, supporting the body’s immune system (our natural ability to heal and protect against illness and disease). This involves recognising that our mind, body, spirit and emotions, are all interconnected, working together to support our immune system.

The Approach provides support that cares for the needs of the body, mind, emotions and spirit. It is based upon Psychoneuroimmunology (PNI), which is the study of the connections between our mind, nervous system and immune system (This area of research is really interesting and there is a link below which goes into a bit more detail). Essentially, stress has a profound effect on your immune system and wellbeing and modern day life is pretty stressful: this is unavoidable, we cannot remove stress from our lives entirely, but we can do things to manage and relieve stress. The charity aims to support all people living with or beyond cancer (and their close supporters) in ways that empower, giving you both support (such as counselling or nutrition advice) and the tools to help yourself make lifestyle changes (such as daily meditation practice). They do this through courses, groups and individual sessions. It is a charity which means they are reliant on funding, but all services are completely free of charge!

One of the things that I struggled with when I was diagnosed with cancer was understanding how my immune system had been unable to effectively fight HPV; resulting in abnormal cell changes growing and developing to the point that they were cancerous. I had run a half marathon just a few months earlier, had a pretty good diet (no meat and limited animal products, lots of fruit and veg etc) and I rarely got ill, so honestly I was kind of miffed about what had gone wrong. Attending this course opened my eyes and I can honestly say has changed my life indefinitely. What I learnt is that we are so much more than just our bodies, that wellness is not a checklist: something to be achieved by going through the motions. Rather, it is about being attentive, mindful and in the moment; it’s about checking in and rechecking in all the time about what you think, what you feel, what you need and embracing whatever arises and finding effective ways to cope with the challenges of everyday life.

Originally I was booked to attend the course in April, however this clashed with my treatment so I rearranged for the end of June. I attended a residential course at the main centre in Bristol (although they do run non-residential courses at various venues across the country). Now what happens within the group stays within the group because it is a safe space for people to let their guard down and embrace the learning/supportive experience. What I can say is that I was blown away by the bravery and open-minded attitude of all who attended and it was a pleasure and a priviledge to share that space with them. The ‘teaching’ centred around the 4 main areas (mind, body, emotions and spirit) as well as considering environment, practical issues, community and relationships. Various techniques were offered as a means of helping to deal with stress; this included meditation, mindfulness, relaxation and imagery. The course offered an overview of each area with some useful advice and discussions on each subject then encouraged you to explore what that meant for you and what changes you could make. It involved creating care plans with goals to be regularly re-evaluated moving forward. The experience was restful and relaxing, but emotionally gruelling and tiring at the same time. At times it was sad and difficult but ultimately it was an eye opening experience that I needed to have and I left feeling empowered, grateful, inspired, hopeful and back in control.

For me regaining a sense of autonomy over my own body has been so important. I am a fiercely independent person and I feel like cancer took that away from me. All of a sudden there were other people telling me what I needed to do and everything I needed was out of my control, and whilst I am eternally grateful for the treatment that I have received, that was something that I found especially difficult. I am not suggesting for a moment that I would have declined treatment: I have faith in medicine and zero doubt that the treatment I received was what was best for me. However, I did feel like my body was not my own for a while and it feels so good and so empowering to feel now that I am in a place (and have the tools) to be able to do everything I can to recover from cancer and treatment, prevent recurrence, take care of my whole self and live well with and beyond cancer.

So now I am faced with the uncertainty of what will happen next and what that will mean for me. I am hopeful that I am cancer free but at this stage I don’t know that. What will follow is continued monitoring for the next 5 years minimum, starting with a scan in a couple of months time. Implementing initial lifestyle changes is relatively easy when you are in a safe and supportive environment with no commitments, making those changes stick long term is more challenging. It requires continuous effort, making time and recognising that you deserve that time to look after yourself. I feel confident that with the continued support of Penny Brohn UK I will be able to keep up with the changes I have already made and in time will be able to make more.

My intention is to follow this post with more detailed discussions of some of the things I have learnt from the course in 4 separate posts relating to mind, body, spirit and emotions because although the focus at Penny Brohn is on those with cancer the principles are really about taking care of your whole self and that applies to, and is important for everyone.

A really useful clip about resilience and balance: https://www.pennybrohn.org.uk/wp-content/uploads/2017/03/Website-Boat-Sequence-Compressed.mp4

Psychoneuroimmunology info: https://www.pennybrohn.org.uk/why-choose-us/what-we-do/

Information about fundraising for Penny Brohn and how to get involved: https://www.pennybrohn.org.uk/get-involved/fundraise/