Cervical screening for LGBTQ+ people

There is often an assumption that being LGBTQ+ nowadays is relatively easy; that Western society in general, is pretty accepting and we don’t face much in the way of challenges. Whilst things are undeniably better than they were 30 years ago, things are far from perfect. We still live in a world where cisgendered, heteronormativity is the standard and those of us who exist outside of those classifications have to battle that on a daily basis. In healthcare, this is particularly problematic.

“Most questions were directed at my partner though I was included in the process…but as a “close friend”. It isn’t questioned, but it is assumed you are heterosexual until you choose to make them aware of what you thought should be obvious. We didn’t always do this as this might add to what was a stressful event by itself.”

As a student nurse I have certainly witnessed some outdated and ignorant attitudes in practice, but I really wasn’t prepared for the extent of it as a patient. During my treatment for cervical cancer I was assumed to be a heterosexual woman at almost every encounter with health care professionals, no one ever asked me about my sexual orientation and I was consistently left with the dilemma of coming out as a queer woman, repeatedly, or letting it slide. This isn’t a new experience for me, but in this context in particular, it was pretty exhausting, and I’ll be honest on most occasions I just nodded along with the practitioner in question, lacking the energy required to correct them. You might be thinking ‘well sure, but is that really such a big deal?’ Yes, actually, it is. It’s about the invisibility of certain identities, about the persistence of stereotypes and attitudes, it’s about the danger of making assumptions and it’s simply not good enough.

In healthcare this can pose a huge barrier to accessing appropriate services. For example, when I first went to see my GP with symptoms of vaginal bleeding and expressed my concerns about cervical cancer, she asked me when I had last had sex. I told her when, and that it was with a female partner, to which she responded, “but you have had sex with men?” The underlying (and very worrying) insinuation here was that if I hadn’t (had sex with men) that I would have nothing to worry about. Sadly, this is a belief still held by some patients and health care professionals alike.

“A UK study of over 6,000 LGB women in 2007 highlighted that 15% of LGB women over the age of 25 had never had cervical cancer screening test. This is compared to 7% of women in the general population. Of those women who had never been for a cervical screening test, one in five had been told by a health professional that they are not at risk and one in fifty had said that they had been refused a test based on their sexual orientation.”

More worrying are the experiences of trans people in healthcare. I recently participated in a tweet chat where several trans people made reference to the fact that they avoided accessing health services at all costs because of the ignorance and often blatant transphobia they encountered from health care providers. It was so hard to hear, as a student nurse I don’t ever want to be the barrier.

“In a recent survey of trans people, 21% had experienced discrimination, transphobia, homophobia or unfair treatment based on their gender identity from their GP or another member of staff at the GP surgery.”

Trans men that have a cervix, like cisgendered women with a cervix, should attend regular cervical screening (pap smear/smear test) appointments and yet this is frequently misunderstood. In fact, if a trans man is registered with their GP as male then they may not be routinely invited for cervical screening, as is standard procedure here in the UK.

“Screening may be particularly challenging for trans and non-gendered individuals as the service is by nature gendered and literature and imagery often assumes a heterosexual biological female status of the patient.”

Buck Angel (a transexual man and trans activist) and colleagues have set up FTM Health; a platform for sharing experiences about accessing health services as trans men, to support each other and educate health care providers about the needs and challenges faced by trans men. It’s such an important message that needs to be heard loud and clear by ALL. During the tweet chat I mentioned previously, several people asked why they would need to know about trans issues when they don’t work in specialist services. Trans people may well access specialist services at some point, but invariably they will also access all manner of services, including general practice for cervical screening, where their smear test will likely be carried out by a nurse or GP. Anyone who has attended a smear knows it isn’t the most comfortable 5 minutes of your life, imagine for a moment the indignity of the experience when conducted by a person who doesn’t understand your experience as a trans man, who has no idea of the physical issues you may be experiencing, who doesn’t have the language to start a conversation about the terminology you feel comfortable with and ultimately makes the experience not ‘slightly uncomfortable’ but actually traumatising, an experience you never wish to revisit. ALL health care professionals need to understand the varying needs of the diverse communities we serve without exception. The way to do that? Listen, learn, expand your horizons, work in partnership with your patients, call out colleagues, reflect on your weaknesses as well as strengths, have the humility to accept when you get it wrong and the willingness to listen, learn and do better next time.


All quotes in bold taken from:

https://www.macmillan.org.uk/_images/LGBT-People-with-Cancer_tcm9-282785.pdf  – The emerging picture on LGBT people with cancer

Articles about access issues and misinformation:

https://www.bbc.co.uk/news/health-39230807 – ‘Lesbians told they did not need cervical screening’

https://www.jostrust.org.uk/your-stories/women-affected-cervical-cancer/vivians-story – ‘As a gay woman I always thought I didn’t need smear tests’

https://www.standard.co.uk/news/health/trans-men-not-offered-nhs-routine-screening-for-cancers-a3740586.html – ‘Trans men not offered routine screening’

Information and resources for Trans men and gender non-conforming people with a cervix:

https://ftmhealth.com – Buck Angel and FTM Health team’s site for the health of transgender men. It has a really useful resource that can be printed out and taken to appointments.

https://www.instagram.com/ftmhealthofficial/ – FTM Health’s Instagram account

https://www.instagram.com/buckangel/ – Buck Angel’s Instagram account

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/623309/Transgender_cross_programme_screening_leaflet.pdf – Government doc ‘Information for trans people, NHS screening programmes’ (this is relevant to all trans people as discusses all screening programmes in UK)

https://www.nhs.uk/common-health-questions/sexual-health/should-trans-men-have-cervical-screening-tests/ – NHS guidance on who requires cervical screening

https://www.youtube.com/watch?v=UiPFCeQnaxE – A video explaining cervical screening for trans men by health care professionals

https://community.macmillan.org.uk/cancer_experiences/lgbt/ – Macmillan’s online community space for LGBT people

https://www.jostrust.org.uk/welcome-jo’s-cervical-cancer-trust-forum/lgbtq – Jo’s Trust’s dedicated LGBTQ forum

Information and resources for LGBQ women with a cervix:

https://www.jostrust.org.uk/blog/let’s-talk-about-it/lgb – Jo’s Trust, challenging persistent myths about cervical screening/cancer and LGB women

https://community.macmillan.org.uk/cancer_experiences/lgbt/ – Macmillan’s online community space for LGBT people

https://www.jostrust.org.uk/welcome-jo’s-cervical-cancer-trust-forum/lgbtq – Jo’s Trust’s dedicated LGBTQ forum

https://www.stonewall.org.uk/sites/default/files/Experiences_of_Healthcare_Stonewall_Health_Briefing__2012__.pdf – Stonewalls LGB ‘Experiences of Healthcare’

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

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

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/

Nausea and syringe drivers

The last few days have been pretty rough as I have been really suffering with nausea. Had my chemo on Wednesday and felt ok, woke up on Thursday, chundered and felt so sick I couldn’t eat or drink anything.

I was expecting to have a review after my radiotherapy, but there was some mix up with it so I didn’t get my review and was sent to the Acute Oncology Service instead (kind of like A&E/AMU for people with cancer). The doctor I saw there was concerned that I was dehydrated and gave me some fluids. She also said she wanted me to have a syringe driver…I can’t help but relate a syringe driver with end of life care but the doctor explained that whilst I am being sick the absorption of oral medications is erratic and delivering it through a syringe driver offers more control. So after several hours, they sent me home with a syringe driver delivering ondansetron and metoclopramide. Went back yesterday to have it refilled and a district nurse is going to come and do it today and tomorrow. So I’m spending the hottest day of the year so far stuck in waiting for a nurse.

A syringe driver is exactly what it sounds like…the prescribed medication is drawn up into the syringe which is then put into a pump (or driver). The nurse sets the rate at which the medication will be administered and it is delivered through a small needle which sits just under your skin, so you are getting a continuous subcutaneous (under the skin) infusion. It is usually changed every 12-24 hours depending on the care setting and the medication.

I still feel pretty shitty, the drugs have relieved the symptoms slightly so that I am able to eat and drink a bit but I still feel sick constantly. I am still eating loads of ice lollies and also lots of sparkling water. I noramlly drink about 3 litres of water a day but I just can’t at the moment. Hopefully this will ease of the next couple of days and I really hope they can come up with a more permanent solution than the syringe driver. The nurse spent ages trying to find me a nice bag to put it in…I’m not sure the one she picked is exactly my style but I appreciate the effort! I definitely feel more self conscious with it, because up until now I haven’t had to deal with looking like a sick person (my treatment isn’t giving me any externally visible side effects), whereas with the syringe driver people can see the bag and tubing.

1 week of chemo and radiotherapy treatment completed!

I have officially completed my first full week of treatment! So, 1 chemo and 5 radiotherapy sessions done, 1/20 to go!

So far my symptoms have been minimal, the only thing I am suffering from is nausea. The best way I can describe it is like having a permanent hangover…feeling kind of sick and pathetic and craving only crap food! Obviously isn’t the most fun thing in the world but it could be worse. I’m eating my own weight in ice lollies because they are the only thing that doesn’t make me feel sick…I’m probably going to need new teeth by the end of my treatment!

Tomorrow my second week of treatment starts with chemo and radiotherapy and then on Thursday I will have a review as well as my radiotherapy. This will give me the opportunity to speak to a doctor about how I’m getting on and hopefully they will review my anti-sickness medication. It’s really important to keep them in the loop about side effects/problems because the sooner they know about it, the easier it is to get on top of it.

The treatment itself is pretty straight forward, the radiotherapy takes 10-20 mins depending on whether they do scans at the same time (for my first 3 they did but as the images showed everything lined up perfectly they will just do these once per week from now on). The chemotherapy takes about 3 hours. The worst bit is the travelling…at the moment there are a LOT of roadworks so it’s a 3 hour round trip every day in which I insist on blasting the air con (because I feel sick) so my poor ma is sat there freezing!

Anyway, one week down, 4 to go!!!

The page name, Girls, and HPV

A few people have asked me about the name ‘All adventurous women do’, so I thought I would explain.

In the HBO show Girls (Season 1 Episode 3), by the incredibly talented Lena Dunham (if you haven’t seen it watch it immediately if not sooner), Hannah finds out she has Human Papilloma Virus (HPV). There is a scene where Shoshanna tells Hannah that Jessa says “all adventurous women do [have HPV]” (see video clips)!

HPV is an extremely common virus which most people will contract at one time or another. Worldwide, HPV is the most widespread sexually transmitted virus which 80% of the population will contract at some point in their life. Most of the time the body’s immune system is able to clear the infection easily and it is entirely possible to have the virus without any knowledge.

There are over 100 types of HPV. The majority of HPV types infect the skin on external areas of the body, for example verrucas and warts on feet and hands.

Around 40 types of HPV affect the genital areas and approximately 20 of these types are associated with the development of cancer. Around 13 of these 20 types are considered oncogenic (cancer causing), meaning there is credible evidence that they are directly associated with the development of cervical cancer, therefore are considered high risk. These high risk types of HPV are HPV 16, 18, 31, 33, 35, 39, 45, 51, 52, 56, 58, 59 and 68. High-risk genital HPV types show no symptoms, so a person infected may never even know they have it. Types 16 and 18 are the most prevalent, causing over 70% of cervical cancers (these are the types that the HPV vaccine protects against).

Additionally, there are nine HPV types that may be associated with the development of cervical cancer, but there is not enough evidence for these to be considered high risk types at present. These are HPV 26, 53, 64, 65, 66, 67, 69, 70, 73 and 82.

The remaining genital HPV types are considered low risk because they do not cause cancer. However, they can cause other problems, such as genital warts.

Whilst these types of HPV are predominantly associated with causing cervical cancer, anyone can contract and pass on HPV. Whilst barrier contraceptive methods do lessen the risk of contracting genital types of HPV, it is very easily spread and therefore cannot be prevented altogether.

In the UK HPV testing is carried out as part of cervical screening as it can only be tested from a sample of cells. So, ultimately the only way to monitor whether you have HPV or not and to prevent your risk of developing cervical cancer is through regular and timely screening (and of course through vaccination where appropriate). So go and get your cervix checked out, tell all your friends and family to go and support the vaccination programme for young girls, you might just save a life!

Useful links about HPV:




A clip of Lena Dunham talking about the episode of Girls in question:

A clip from the episode:

Link to Lena Dunham’s instagram (which is brilliant, hilarious and well worth following) and her podcast (which I just discovered):



Featured image and video courtesy of http://www.hbo.com/girls and https://www.instagram.com/lenadunham/

Treatment plan – pelvic radiotherapy and cisplatin chemotherapy side effects

2 days ago I met with my new oncologist and nurse specialist – 6th doctor, 3rd oncologist, 3rd hospital and 4th nurse specialist (I swear I’m not a fussy patient, they just keep referring me)! My treatment will take place over 5 weeks starting 29th March and will consist of 25x external radiation treatments (5 days per week) and 5x cisplatin chemotherapy treatments (1x per week). Fortunately because the tumour was completely removed I don’t need to have internal radiation/brachytherapy (it sounds fucking horrific)! The doctor went over all the side effects and I signed consent forms etc, it wasn’t particularly new information as I have had plenty of time to do my research and the previous oncologists talked me through most of it before but it was kind of overwhelming now that it is actually happening.

Radiotherapy is usually given as the main treatment for cervical cancer (that requires more than a surgical approach). It is often given in combination with chemotherapy because chemotherapy makes the cervical cells more sensitive to the effects of the radiotherapy, thus making it more effective. This type of treatment is usually called chemoradiation.

I’ll start with the radiotherapy…Radiotherapy uses high-energy rays, usually x-rays and similar rays (such as electrons) to destroy cancer cells in the area that’s being treated. Normal cells can also be damaged by radiotherapy. Normal cells can usually repair themselves, but cancer cells can’t. Radiotherapy is carefully planned so that it avoids as much healthy tissue as possible. However, there will always be some healthy tissue that’s affected by the treatment and this will cause side effects. Unfortunately in pelvic radiotherapy, rather a lot of healthy tissue is affected resulting in a number of short and long term side effects. The most common short-term effects are; bladder and bowel changes (urinary frequency and urgency, radiation cystitis, haematuria (blood in urine) and diarrhoea and urgency etc.), fatigue and effects on the skin (radiation burn, loss of hair in area being treated). Many people experience these symptoms only during and for a short while after treatment, however for some the bladder and bowel changes can be permenant. Additionally, pelvic radiotherapy causes infertility (menopause and damage to uterus) and vaginal stenosis (narrowing). It can also cause long-term damage to the bones (osteoarthritis). FUN!

Cisplatin chemotherapy, is as the name suggests a platinum based drug. It is given intravenously along with lots of fluids as it can cause kidney damage. It does not cause hair loss, but like most chemotherapy drugs often causes nausea and vomiting. It increases risk of infection (because it can reduce the number of white blood cells in your blood) and can cause anaemia and increased brusing/bleeding (due to reduced red blood cells and platelets in the blood). It often causes loss of appetite and changes in taste as well as fatigue. It can also cause hearing loss, in fact the doctor told me many women are not able to complete the full course because of hearing loss (this can be permenent if not dealt with). It can also cause infertility.

These all sound pretty grim, and some of them I will definitely get, but everyone reacts to treatment differently so there is no way of knowing just how awful I am going to feel until I get there. The good news is that there are lots of things that I can do to help manage any symptoms that arise. I can follow the advise about skin care and mouth care, I can follow a low-fibre diet, drink lots of water and try to cut out/down on stimulants such as caffeine and alcohol. I can go for walks and do yoga to keep my bones, heart and mind healthy. I can follow the advice of the medics, research for myself things that may help and not put too much pressure on myself. The best news was that I have to try not to lose weight which means I have been given genuine medical advice to stuff my face! 😂 Had my planning (CT) scan today and am now the proud owner of my first tattoos (4 little dots to help them get me in the right position for radiotherapy (see image)).

Useful links:

Radiotherapy (including info on internal radiation/brachytherapy) – https://www.jostrust.org.uk/about-cervical-cancer/cervical-cancer/treatments/radiotherapy


Long-term effects of pelvic radiotherapy – Macmillan have a great patient info booklet on this (and lots of other topics) which you can order for free from this website: https://be.macmillan.org.uk/be/s-605-radiotherapy.aspx

Chemotherapy – http://www.macmillan.org.uk/information-and-support/treating/chemotherapy/chemotherapy-explained


Cisplatin – http://www.macmillan.org.uk/cancerinformation/cancertreatment/treatmenttypes/chemotherapy/individualdrugs/cisplatin.aspx


Black Juzo lymphoedema compression tights

Lymphoedema – what it is, prevention and management

Today my super sexy lymphoedema prevention tights arrived so I thought I would write a bit about lymphoedema.

The lymphatic system is part of the body’s immune system, helping to protect from diesease and infection. The lymphatic system is made up of lots of lymph nodes, lymph vessels and lymph fluid. Lymph fluid flows through lymph vessels that connect lymph nodes. Lymph nodes essentially act as a filter, they contain white blood cells (lymphocytes), which attack and break down bacteria, viruses and damaged cells. Any destroyed bacteria or waste products are then transported via the lymph fluid to the bloodstream to be excreted. Sometimes lymph nodes trap bacteria or viruses that take longer to destroy and when this happens they can become swollen and tender.

Lymphoedema developes when blockage or damage prevents lymph fluid from passing through the vessels or lymph nodes and the fluid cannot drain away in the normal way. The fluid then builds up between body tissues and causes swelling. Lymphoedema is a chronic swelling, meaning it cannot be cured because the causes can’t be reversed. However, for most people the swelling can be reduced, particularly when it’s diagnosed early.

In cancer patients lymphoedema can be caused by cancer itself that has begun or spread to the lymph nodes or that presses on the lymph vessels, radiotherapy treatment or surgery to remove lymph nodes.

I had 28 pelvic lymph nodes removed, spread to lymph nodes and will be having radiotherapy which means that I am at high risk of developing lymphoedema. Most hospitals in the UK take a curative approach to lymphoedema, but I was super lucky to be referred to The Royal Marsden, the worlds first hospital dedicated to cancer, who just so happen to take a preventative approach to lymphoedema. So, I had an appointment with a specialist physiotherapist who gave me some guidance on how I could help prevent developing lymphoedema and measured me up for some support tights which work much like compression (anti-embolism/DVT) stockings but also apply pressure to lymph nodes and vessels encouraging movement of fluid. I have to wear the tights everyday for about 6 months and I will have to take care of my legs and feet indefinitely. It means making some changes; no more walking around bare foot 🙁 and I have to moisturise regularly and I’m not supposed to run or do any high energy/high impact exercise for a while. Of course there is no guarantee I won’t develop lymphoedema anyway, but at least I will know I did everything I could to prevent it.

For anyone at risk or experiencing lymphoedema or for anyone supporting someone with lymphoedema it is well worth taking your time to understand what it is, what the risk factors are and what you can do to prevent/manage it.

Lymphoedema links:




Picture of French word Bonjour

The story so far…

I thought it might be a good idea to post a bit about my story so far. I have stage 1B1 squamous cell cervical cancer with lymph involvement. I was diagnosed in October 2016, following an abnormal cervical screening result (high grade changes/severe dyskaryosis).

I started experiencing symptoms of constant bleeding, lower back pain and urinary frequency at the start of August (retrospectively, the urinary frequency and lower back pain may have started earlier but I put it down to drinking a lot of water and my career in health care respectively). I put off going to the GP for about 5 weeks, but after two normal periods and no change in symptoms I went to see my GP for an overdue cervical screening (smear test).

Following the results I had a colposcopy, where an area of abnormalities was removed and sent off for testing (Large loop excision of the transformation zone (Lletz)). This was done under local anaesthetic. After about two weeks I was asked to go back in and at this point I was given the news that I had cervical cancer, that the tumour was incompletely excised and poorly differentiated which basically means that I had a grade 3 tumour and part of it was still there. At this stage that was all they could really tell me.

Following that, I had a CT and MRI scan, before going back for a further meeting with my consultant and it was great news! He told me that I had stage 1A2 CC and that the scans showed no visible tumour at all and although there was a couple of slightly enlarged lymph nodes it was probably just because of the LLETZ procedure. I was advised that because of the histology report there must still be some microscopic cancer cells present but that they were so small they weren’t showing on the scan so I would need to go for an internal MRI scan and that whilst I would need more treatment it would be surgical and they felt that a fertility sparing option would be best given my age. As such, I had to be referred to The Royal Marsden (a specialist cancer hospital in London).

Following my internal MRI scan I met with my new consultant who specialises in a procedure called a radical trachelectomy, where rather than remove the uterus and cervix as they do in a hysterectomy, they remove the cervix only and insert a stitch where that was (essentially an artificial cervix). This means that it is possible to get pregnant (although slightly harder) and possible to carry a pregnancy (again harder and with greater risk of miscarriage and preterm birth). Any pregnancy following this is considered high risk so would involve increased monitoring and delivery can only be by caesarean section. The consultant told me that I actually had stage 1B1 CC, and that although the tumour was relatively small it had such poor histological features and this meant that a radical trachelectomy was the best option (rather than the less invasive option of a cone biopsy). I was booked in for an Examination Under Anaesthetic (EUA) which involved having an internal examination, a sigmoidoscopy, cystoscopy and hysteroscopy… Ouch, I’m super glad I was asleep! Nothing suspicious was found so they went ahead with the radical trachelectomy and lymph node dissection on 6th January 2017. It was the most physically painful experience of my life to date and I seriously underestimated how debilitating it would be. I was booked in for 3 nights but I recovered well and was determined to get up and moving so they let me go the following afternoon.

Three weeks later I was given the news that although the tumour had been completely excised 2 of the 28 lymph nodes had cancer cells present. So, I was advised that I would need chemotherapy and radiotherapy in order to kill off any remaining cancer cells. Since then I have been referred back to Southampton, where the oncologist suggested the best treatment would be Cisplatin chemotherapy in conjunction with Intensity Modulated Radiotherapy Treatment (IMRT). Unfortunately, at this point in the story they don’t have the facilities to treat cervical cancer with this type of radiotherapy, so the doctor suggested I went back to The Royal Marsden or to the Norfolk and Norwich (as my family home is in Norfolk).

So, I’m back in Norfolk now awaiting an appointment with my new consultant to finalise a treatment plan. I have had an MRI and PET-CT scan both of which look fine, which is great news. The chemoradiation is really just an insurance policy at this stage, it’s possible that I am completely cancer free, but because of the metastases the assumption is that there are some microscopic cancer cells floating around somewhere which need treating before they have the chance to spread anywhere else!

Here are some links to some useful resources which explain some of the technical terms used in my story so far: