Holding On

A lot has happened since my last post. I have had my fourth breast cancer operation, my lovely friend John (that I’ve known since childhood), died and I’ve had four cycles of chemotherapy. I think it is fair to say I have been holding on….

Holding on to the lifestyle I had carved for myself.

Each surgical operation I have had through this breast cancer journey has had this habit of bringing with it another additional bit of bad news. A kind of tortuous drip effect, we (my husband and I) have adjusted to the tumour status and characteristics at each investigation or operation outcome. Going into the last operation I had hoped we knew everything we needed to know. However, pathology reports have this habit it seems (in my case anyway) of churning out more findings; this time it was additional tumour and another positive axillary lymph node. We reset our mark in the sand again and after a short period of psychological adjustment, we recalibrate, recover and carry on.

Body changing and life changing surgery takes a while to adjust to. Having all of your lymph nodes removed from your axilla means you are forever at risk of arm lymphoedema. This means that you can no longer have any blood tests, injections or blood pressure measurements taken on that arm. Not much of an issue you might think, but it means the other arm as a consequence takes the full assault of tests and has consequences for subsequent chemotherapy administration. It also means you have arm exercises that you must do for life. Recovery from surgery can seem to take forever, regaining full arm movement is a slow process that takes perseverance. In reality, it wasn’t that bad for me and I managed to get back into handstand (it was a personal goal) about 4 weeks post-surgery; recovery isn’t all bad news.

Coming to terms with an altered body image has been a longer journey. My surgeon did an amazing job for me and I am very happy with the overall cosmetic result.  Wearing a bikini on holiday this summer wasn’t an issue for me. Strangely, it has been managing the process of showering and getting changed at the gym that has been a challenge. Gym life BC (before cancer) I would undress with gay abandon in the changing room, my philosophy, we all have bodies they’re just different shapes and sizes-no big deal. Gym life post cancer surgery, yeah not so much gay abandoning going on here. In an effort to retain some aspects of the lifestyle I had BC I was desperate to get back to the gym, but the anxiety of changing in the wide-open space of the gym changing room was becoming an easy excuse to avoid the gym altogether. It can seem such a small thing in the big scheme of things, but being able to overcome those anxieties and feel able to do normal very basic activities I’d previously not blinked an eye about, is a big deal when sport and exercise is a big part of who you are.

Moving on to chemotherapy, I knew having chemotherapy would be tough, I’ve talked to plenty of cancer patients over the years. I’m also very resilient and a pretty tough cookie. I managed to get to the level of third Dan black belt in karate (not quite sure how, except for the expert instruction from the superb Sensei Matt Price and Sensei Nick Heald from the Leeds Karate Academy). I’ve taken plenty of punches (and kicks) over the years and I know I can take pain and not even wince. Yet chemotherapy is really tough, the physical side effects are managed really well by the team of professionals looking after me, but managing chemotherapy and life, and work has been extraordinarily rough. At the first chemotherapy cycle it took the expert nurses four attempts to put a cannula in my left arm to administer the drugs; I knew it was going to be an issue as even the experienced anaesthetist at my last operation had struggled to get a cannula in first time. So, we’d gone to my first chemo session prepared. My husband had me warming up at home to get my blood vessels working and this continued once we arrived on the chemo unit. Picture this, me in my little Ted Baker off the shoulder dress and heels (it was August and still warm) my husband has me doing squats and lunges in my chemo bay in the off the shoulder dress and heels while we wait the arrival of the chemotherapy drugs from pharmacy. Yes, I drew a few looks, but I was eventually cannulated and we were off. This is me at cycle one wearing the very attractive cold cap in an attempt to reduce the impact of hair loss.

I had thought I knew quite a lot about chemotherapy given my professional background, yeah, strike that, I now know I knew very little. When you have chemotherapy, your immune system is compromised and so you are vulnerable to picking up infections you would normally fight quite easily. To reduce the risk of developing a bacterial infection you are advised to avoid certain foods, the list is way longer than I expected. I also didn’t realise that the chemotherapy would have such an impact on the veins in my left arm as quickly as it did. By cycle 2 I was already feeling pain in my lower arm on administration of the drugs and afterwards this discomfort continued. With the support and expertise of the Oncology nurses I moved to having a PICC line inserted (Peripherally Inserted Central Catheter) and this has made subsequent chemotherapy administration much easier. PICC lines are not without their problems though, they have to be managed carefully to avoid them becoming blocked and infected (weekly flushing and dressing changing) and they must be kept dry. I was given a plastic sleeve to support showering with the PICC line and advised that many patients find wrapping the arm in cling film often works better. Try wrapping yourself in cling film with one hand it’s not easy and it didn’t go well for me. Needless to say, I’ve stuck with the plastic sleeve..

The main learning for me has been about the cold cap used to support patients having chemotherapy to keep their hair. For instance, I didn’t know that around half of people that try the cold cap are unable to tolerate it (people who suffer from headaches can find it unbearable). The cold cap success rates also aren’t as great as some of the reports on the internet suggest. Even if you can tolerate it, it doesn’t work for everyone and it depends on the type of chemotherapy drugs you are prescribed and even for women having chemotherapy for breast cancer the drugs you are prescribed can vary. You also have to wear the cold cap prior to administration of the chemotherapy (approximately 30minutes before) and for a period of time after chemotherapy has been given (around 90 minutes afterwards), it basically can feel like a long time.

Trying to hold on to my hair.

I had tried the cold cap for the first 2 cycles but it didn’t work for me, and losing my hair was traumatic despite being prepared that the cold cap might not work. I suffered depression after cycle 2. I didn’t want to get out of bed, I didn’t want to see anyone or talk to anyone and I was ready to give up. My friends were messaging me as they were worried as I’d stopped doing drop offs and pick-ups at gymnastics, I avoided everybody including my sister who has been a pillar of support through my whole cancer journey. I was lucky to have the amazing support from my hairdresser and friend of over ten years who skilfully managed my collapse from “I can do this bring it on” to “I can’t face this, it’s too much”. My hair had dropped out in clumps it was uneven with bald patches in weird places and we both finally agreed the best course of action was to shave the remaining hair off. So, one Sunday afternoon that’s exactly what she did for me. Getting myself there and managing to sit there while she shaved what was left of my hair was so difficult, and I only managed it because of her love and care. The task of ringing up and booking an appointment to get a wig was another unbelievably hard step for me to take.

You might wonder why losing your hair could be such a big deal given the other things cancer puts you through. Everyone is different, and for me it was a big deal. I’ve never been a very confident person. As a small child I was extremely shy and I found it hard to talk to anyone I didn’t know well. On my first day of clinical placement as a student therapeutic radiographer at The London Hospital, I was so nervous about speaking to patients I lost my voice (I’d not been ill) I was simply overwhelmed by anxiety; I overcame this fear as my student training progressed. As I moved into the role of a qualified health practitioner I developed strategies to enhance my confidence; I worked hard to make sure my professional knowledge was sound so I could talk with confidence at work, and I wore my hair in different ways to express the inner me and to boost my self-worth. These strategies have continued as I transferred into a lecturer and researcher role. Standing in front of large audiences to speak can be daunting and feeling prepared has gone hand in hand with feeling well presented and having good looking hair. More than that even, I love visiting my hairdresser, she’s a great friend. I would enter the salon often worn down by the stresses of the week, tired and bedraggled. I would leave like Beyonce, flicking my hair and strutting like a diva ready to take on anything; I miss that.

I eventually pulled myself round, the constant support from my close network of friends and family, the totally amazing oncology nurses at the Sir Robert Ogden Macmillan centre and a friend’s blog actually pulled me back to reality. It’s only hair and in the big scheme of things I am very lucky.

Holding on to memories.

Amidst all of the above, during the summer an extraordinary human being and friend who had been a special part of my childhood and my adult life, died; he was having a bone marrow transplant following years of living with leukaemia. He was without doubt, exceptional. He was an amazing musician, played the Sax like it was part of his human form, a song writer and producer. He touched the lives of so many people in a positive way and he has left a large void that is hard to fill. In the last year of his life he did an amazing thing for a complete stranger, at a time when he was already unwell himself. He lived his life with love and passion and humour, signing off all his messages with ‘Love and sunshine’, that was John.

 

This photo taken by Mark Loraine, another of my very talented childhood friends (I’m surrounded by talent!) makes me smile so much. It was taken on Saltburn beach, one of my favourite places in the world and where I know John liked to surf. John left us all a legacy in his music that lives on. More than that he left us all with an insight of how to live our lives better. Since his passing there has been a swell of love, and a desire from those that were lucky enough to know him, to be more like John. He was kind, he lived his life with love, he gave to others generously, and he always, always made me smile.

Holding on to my career and holding on by my finger nails to life itself.

During the process of the standard cancer bad news, treatments, appointments, bloods, and procedures we have tried to maintain business as usual at home for our children. The usual life stresses still happen and we still have to deal with keeping on top of the school diary of organised events (Harvest festival, choir concerts, athletics competitions) as well as gymnastics training and competitions. Dealing with the accidental dropping of your daughter’s one and only school tie in the dog’s water bowl 2 minutes before you have to leave for school, or supporting our son through settling into a new job in a new city and finding a flat to live in that he can actually afford on a graduates pay, these all still need our attention. Add in that my husband is still working, still trying to make sure he gives his patients the care that they need, contributing to on-call to save adding burden to his already stretched colleagues. I am still trying to work when I am feeling well, because I believe my work is important, has worth and I am determined that my life will not be defined by my breast cancer diagnosis. I am a female academic, my career is already disadvantaged because I took a career break to have two children and I work part-time (and I wouldn’t have it any other way). But research funding applications don’t have sections where you can claim extenuating circumstances for having fewer peer-reviewed journal articles than your colleagues. I have cried lots (daily in the first month following diagnosis) worried about the future and whether I would be there for my children when they needed me, and whether I would be there for my husband; the thought of leaving him to cope alone in the future is horrendous, and too hard to bear some days.

We are still struggling to manage our lives through my cancer journey. We are trying to keep life as normal as possible for our daughter who is coping with her mum having cancer treatment brilliantly. But she has had a couple of wobbles in moments of quiet time where her thoughts have drifted to worries about my breast cancer and the future. She’s not the only one who worries about the future, David and I worry with every pain and twinge I experience that brings a fresh heart sink moment of “is this something I need to tell somebody about? is it bone pain?”

Throughout this difficult period for us I have been so proud of how our children have pulled together as a family, how they have supported us and each other; no words can express my love and pride for these guys.

What it all comes back to is love, kindness and support. I have been blessed with the most amazing support from friends, colleagues (actually I don’t see them as colleagues they are all my friends) and family. I can’t tell you how much this support has meant during this period. The messages that come at all times of day with no expectation of a reply, the gifts left for me without need for words of thanks, the hand drawn pictures, the art personalised for me, all because people care and they want to help. The friends who meet me for coffee, for food, for walks, who share of their time, who send me playlists to lift my spirits and keep me going, who cry with me when I’m down, who come up with ways to help me overcome the difficult weeks. To those people who perhaps have stepped out of their comfort zone to tell me they love my new hair cut (I’m not always sure they know it’s a wig or not, but it doesn’t matter) they can’t know the truly transformative impact it has on helping me cope.

I find myself saying thank you so often and it never seems enough, and I also doubt whether these amazing people realise quite how important all that they have and continue to do for me and how much their messages buffer the difficult stuff. It’s no exaggeration that they are the only reason I am able to move from holding on to moving on. I have pondered what I could give back to these selfless human beings who have done so much for me. The one thing I feel I can give to you is the insight that a cancer diagnosis bestows on you. Live your life with passion, with purpose, and with love. It is easy to let the drudgery of the negativity in the media, or in the narratives that some people express under the guise of fact, but which is in fact opinion, bring you down.  I recall as a young qualified therapeutic radiographer an older staff member saying to me “I don’t understand why you young ones are in such a hurry to achieve everything, you have the whole of your lives, what’s the rush?” I never could quite align myself to that thinking, and here I am faced potentially with a shortened life expectancy. I am prone to quoting a bit of Shakespeare and not breaking this trend I thought I’d share this extract from The Tempest, spoken by Prospero, which I love, and more eloquently describes the fragility of life, and the reality that in an instance all that we hold close may simply disappear.

“And like the baseless fabric of this vision,

The cloud-capped towers, the gorgeous palaces,

The solemn temples, the great globe itself—

Yea, all which it inherit—shall dissolve,

And like this insubstantial pageant faded,

Leave not a rack behind. We are such stuff

As dreams are made on, and our little life

Is rounded with a sleep”.

The Tempest Act 4 scene 1.

The truth is we are all mortal, and none of us know when our time will be up or when our dreams will end, and so we must use the time we have with purpose, with love, with kindness and with passion. I’m trying to be more like my friend John every day, he truly lived his life.

So, while I’ve been holding on over the last few months, I’ve done so because of amazing people, and amazing love and I will continue to hold on to my beautiful family, my beautiful friends, and to beautiful memories. As I sign off this blog, I’d like to share with you this song written and produced by John (sung by James Arthur) and I invite you to join me (in a virtual sense) to dance around your home while I dance in the kitchen holding on to my amazing husband, as we have hung on to each other and will continue to hold on to each other through this whole journey, me attempting to replicate the grace of Oti Mabuse from Strictly, failing terribly but enjoying the dream.

Hold On by John McGough

Love and sunshine people (oh and still hoping for crisps).

Be kind, be grateful, be happy.

So this week I’ve been working with these brilliant dudes  Fabian Seymour and Jo Lidster teaching research and innovation to keen minds, eager to learn about the innovation pathway so they can be agents of change when they leave the University and take up employment; being a researcher and an educator is awesome sometimes. This week I have also been working with some great people at the College of Radiographers on patient and public partnership – it’s been an  amazing week and it’s been non stop. I finished the week on a high watching our final year undergraduate students at the end of their week on the Research and Innovation in Health course delivering their innovation pitches to the Dragon’s Den-they blew me away they were so good.

After such a great week I left work on Friday on a high. Flicking through my twitter feed on the train on the way home I read a tweet from a beautiful woman with secondary breast cancer who has just received the devastating news that she only has weeks to live. The photo attached to her tweet was a holiday snap of her with her daughter, it was a beautiful picture of a relationship that will be cut short too soon, and in a carriage full of strangers I cried. Tears streaming down my face because I could think of no words to offer this lovely woman. It was an abrupt reminder that it was time for me to switch off from work and focus on what’s happening in my personal life,
It’s funny how some moments in life stick in your mind.  I remember asking one of my daughter’s friends at school (the lovely Chloe) what she had in her packed lunch one day. She replied “I’m hoping for crisps”. It made me laugh then and it still makes me chuckle now. I don’t think she got crisps that day, but then in adulthood we often don’t get what we hope for.

When I underwent a mammogram and then ultrasound for a suspicious breast lump in March this year, I knew almost instantly from the measured words of the lovely radiologist that it was going to be cancer; when he moved on to biopsy the lymph nodes under my arm it kind of sealed it for me. So when I went back to clinic a week later with my husband for the biopsy and imaging results I knew what was coming, and we (my husband and I) were prepared. Like the the lovely Chloe I had in my mind something I was hoping for. A nice small (less than 1cm) low grade tumour and no lymph node involvement would be lovely thank you; I didn’t get what I’d hoped for either.

I had drawn this imaginary line in the sand of tumour size and spread, that I felt I could cope with. So it wasn’t the small, low grade tumour I’d hoped for, but at least there wasn’t any positive lymph nodes-I could cope with that, my line in the sand had shifted a little, but it was ok, bring on the treatment.

Surgery day came and a small hard blemish had appeared on my breast that caused concern, the surgeon wanted to see it on ultrasound before theatre, so off we went. The small hard blemish as it turns out was nothing. Although the radiologist’s measured words hinted at something more worrying, a second tumour previously not identified and distinct from the first lesion. A devastating blow delivered moments before heading down for surgery. Our heads were in a spin, this news had implications for the surgery I was about to undergo and we had no time to process it, or understand the implications. But it was fine, the surgeon had altered his plan, admittedly on the fly (not ideal), and we were off, treatment had begun.

Fast forward two months and ok, it hasn’t really gone according to plan. A further two operations and a positive lymph node later (yes a damn positive lymph node) and I’m back on Monday for operation number 4. My line in the sand has shifted not once but several times now. The most recent at a pre-surgery clinic appointment when I realised the one thing I’d always imagined would be my breaking point, the one thing that I felt I would not be able to cope with, was now staring me in the face. My coping strategy was pushed to its limit, what was I going to do now?

Like so many others have done I’m sure before me, I held back the tears in the clinic room, through the hospital corridors and made it back to my car before the avalanche of tears came. I’d gone alone to this appointment not expecting bad news, my oncologist husband had a clinic with patients that needed to be seen, so I’d faced this news alone.

So what do you do when the line of acceptability you’ve drawn in the sand is breached so badly it’s literally in the sea? Well, I did what any self respecting modern woman would do, I turned to Google. Searching the internet I quickly realised two things.  One, I’m actually very lucky, there are far more women out there going through far worse things than I am (had a word with myself instantly), and two, I can make a plan, I can take control of somethings, and I can turn a negative life event into something truly positive. The best part was I shared my plan with my closest friends and family and they all endorsed it, helping me to shape and refine it, I know I am truly blessed.

So I’m here now facing operation number 4, it’s not where I wanted to be. I’ve already been through the slow painful process of rehabilitation following surgery. Hours of persistence with arm exercises and a lovely, amazing Pilates teacher who showed me such kindness it made me cry, and I have regained full range of motion in my shoulder joint.

 

This photo of me doing a handstand was taken just this week, I was so chuffed to be able to do this again. But on the snakes and ladders cancer board, by tomorrow evening I will have slid down that big giant snake no one wants to land on, right back to the beginning of the board. I will have to work hard one painstaking square at a time hoping to avoid further snakes (infection and lymphoedema) back up the board to recovery.

I mentioned in my last blog my love of Shakespeare, Hamlet is one of my favourites, one of the great tragedies. Even better than Hamlet though is Tom Stoppard’s Rozencrantz and Guildenstern are Dead. I have been thinking about this play a lot this week. I love this play. If you are not familiar with it, the two main characters of Stoppard’s play (Rosencrantz and Guildenstern) are minor players in Hamlet, two of his old school friends and courtiers. Stoppard’s play is about existentialism, it is brilliantly conceived and beautifully written. Off stage in Hamlet is on stage in Rozencrantz and Guildenstern are Dead, and vice versa. The two characters struggle with the meaning of life and their purpose within it. This lovely quote below from Act 2 could easily have been written about the cancer journey.

“we cross our bridges when we come to them and burn them behind us with nothing to show for our progress except a memory of the smell of smoke, and a presumption that once our eyes watered.”

Burning the bridge behind us is a reference that goes back to Roman times when army commanders would order the burning of a bridge to avoid the army retreating, soldiers had to fight to stay alive.

This eloquent description of the situation Rosencrantz and Guildenstern find themselves in resonates with my cancer journey to date. I have faced each operation at the point it has occurred, no point in worrying before then, but with each operation there is also no option for return to a pre cancer self. There is only the option to move forwards to a new version of oneself, and there is little to show for each struggle experienced except the memories of pain and discomfort, sickness and fatigue that linger once the physical manifestations are gone.

So what exactly is the point of this blog? I hear you ask.

The purpose is two fold;

The first is to highlight that however desperate things can seem, we can attempt to seize control of something, even if the only thing we can control is how we react to the events that are thrust upon us. This in itself can bring some internal peace.

Secondly, despite the moments of sadness and trauma in my cancer journey so far, I am incredibly happy. In part, this is because I have experienced unbelievable kindness, the best of humanity, and I am so very grateful. This doodle above in the header of this blog that my daughter drew the other day while she was eating her breakfast before school kind of says it all.

Be kind, be grateful and I would add a third, be happy,

“Be happy- if you’re not even happy, what’s so good about surviving?”

Rosencrantz and Guildenstern are Dead (Tom Stoppard 1966)

Coming out: When professional meets personal.

In June last year I celebrated thirty years as a qualified therapeutic radiographer, fourteen as a clinical practitioner in the NHS and sixteen as an educator and researcher. In these thirty years all I have wanted to do is to make a difference, to make things better. By better I mean to make the experience of having radiotherapy following a diagnosis of cancer a little more bearable, to improve radiotherapy techniques and improve treatment accuracy.

As a clinical radiographer I tried to do this by challenging the status quo and conducting research and service developments. My PhD investigated the radiotherapeutic approach used for treating women following a diagnosis of breast cancer and my current academic research and teaching has been in this field also. In my breast cancer research (The S4A study) the focus has been about enhancing accuracy and enhancing the patient experience.

I’m a huge advocate of women understanding how to reduce their risk of developing breast cancer. I’ve been acutely aware of the risk factors since studying as a student back in the 1980s and I am currently a trustee for a charity called The Bust Trust who aim to support breast health and wellbeing.

So it was a big shock when in March of this year I was myself diagnosed with invasive breast cancer. I have worked hard over the years to reduce my own risk of breast cancer,  I had my first child before I was thirty and breast fed both my children (considered protective factors for breast cancer), there is no family history of the disease, I’ve never been over weight and my alcohol intake is minimal; ok maybe my instagram posts of martinis in different locations presents a slightly different image-is it to late to delete the evidence? So I considered myself low risk, how wrong I was.

I have tried to keep my diagnosis private for the benefit of my children and really because I just wanted to get on with treatment with minimal fuss. But I think it’s time to come out and declare I’m now an official member of that not so exclusive and not very popular guild, the cancer club.

So why is it time to go public

Well it’s certainly not about gaining sympathy, it’s about doing justice to the hundreds of women that get a diagnosis of breast cancer every day who are brave enough to share their stories so that professionals like me can learn to do things better, make cancer care better. It’s about adding my voice to the growing throng of people who have received a diagnosis of cancer, that this journey is not a fight or a battle to be won or lost, it is a deliberate process of undertaking treatment and self care based on the very best scientific evidence, guided by well informed clinicians, taking each step with deliberation, affecting my own informed choice of the path to take, maintaining control over the decisions that are made and hopefully doing all this with a modicum of dignity.

I have made the decision to continue to work as much as I can during my treatment. This is not because I am in any way attempting to be super-woman, or because breast cancer treatment is a doddle-trust me it is not. Continuing to work is not for everyone and managing treatment, clinic appointments, as well as all the crazy stuff going on in your head is not at all easy. But I have chosen to continue to work because I love what I do, and I am more than ever, passionate about making radiotherapy for breast cancer a kinder, more dignified and even better treatment than it currently is. Also because working is a distraction, it helps to stop thinking about yourself and focus on other people. Mostly though, I am continuing to work because it is integral to my entire being. I was a competitive gymnast as a youngster; a sport that instils an ethic of hard work and commitment. You were never allowed to miss training, ever! The only time you were allowed to miss training was if your leg fell off, even then you’d be expected to turn up for conditioning.

I remember as a gymnast falling off the asymmetric bars doing a new move, and lying on the floor staring at the gym ceiling, gasping for breath and in excruciating pain. In the distance I heard my gym coach, he was supporting a gymnast at the other end of the gym, he bellowed across to me “What are you doing on the floor? Get back up and do it again!” I did, and I felt better for it. So that’s all I know what to do, when you fall down, you don’t stay down, you carry on and you keep trying to do better.

Most of all it’s time to go public because I need to say thank you. Thank you to my family and friends for their unending support, and understanding. Thank you to those that have messaged me, laughed with me, had coffee/drinks with me, checked in with me religiously without need for a reply, shared my sadness with me, and shared their inner personal experiences of their journeys with me so I didn’t feel alone. Thank you to those who have offered help at any time of day, who have done school pick ups, gym pick ups, and sleep overs so I can get to clinic appointments and recover from surgery. To those that have offered to run with me to help me get back to fitness, to all of you -thank you. To those that when I said we were running the CRUK 10K Race for Life and would they support us (meaning would they come and cheer us on) they all signed up to join us and many of them don’t run or hate running- from the bottom of my heart, thank you. Because I will never be able to repay the kindness shown to me. But mostly because out of the trauma of a cancer diagnosis I have felt the most amazing love from my special family and from incredible friends-you know who you are. This image of my daughter with her gym buddies says it all, it says unbreakable friendship, a circle of strength and support and I feel that this is what all the special people in my life are doing right now for me, and it makes me happy.

And though she be but little, she is fierce.

Shakespeare, Midsummer Night’s Dream, Act 3 scene 2.

I love Shakespeare and this quote from a Midsummer Night’s Dream about Hermia is often seen as an insult because it is about how Hermia behaves when she becomes angry. However, it has become my inner mantra at clinic appointments where the unending trail of bad news each time you visit has potential to crush us (my husband and I). I have held back the tears each time the news worsens because my circle of strength makes me fierce.

#ResearchMatters

Getting published, starting a research project, navigating ethics approval, do you need a helping hand?

Research is important in healthcare; it should be at the heart of what we do. It is only through research and innovation that we can improve treatments, make the patient experience better and continue to develop interventions that work but don’t cost the earth. The Department of Health for England has research and innovation as a key priority⁽¹⁾. As a profession, radiography tends to lag behind other Allied Health Professions and nursing in terms of engagement with research; a recent research capacity audit highlighted this gap in our capability to bring in research funding, publish research outputs and produce a research ready workforce⁽²⁾.

It’s not all doom and gloom though; there are pockets of excellence around the UK where research radiographers and Professors of Radiography are pushing forward this agenda. Dr Christina Malamateniou is leading a new mentoring programme for novice researchers in radiography. So if you have some research you want to publish, or an idea for a new research project or evaluation of a service, but you don’t know quite where to start why not join the scheme for the opportunity to be matched with an experienced radiography researcher to help realise your goals. Want to know more? Take a look below, join the radiography revolution show that research matters.

 References

1. Department of Health. Department of Health-priorities 2016 [Available from: https://www.gov.uk/government/organisations/department-of-health/about – our-priorities.
2. Probst H, Harris R, McNair HA, Baker A, Miles EA, Beardmore C. Research from therapeutic radiographers: An audit of research capacity within the UK. Radiography. 2015;21(2):112-8.

Sometimes we just have to do better.

I’m very proud of my profession, I’m also proud of the great strides health workers of all professions have made over the years to improve treatments and care for patients diagnosed with cancer. However, there are some areas of cancer care where we simply need to do better. This month Dr Daniel Saunders presented at our Sheffield Hallam cancer research seminar series, the title of his talk “Understanding the needs of lesbian, gay and bisexual cancer patients, their partners and carers”. This thought provoking presentation is important for all of us working in cancer care, those working on the front line directly with patients and also researchers working in oncology.

I learnt a lot from Dan’s presentation, and found some of the statistics presented quite shocking. If you are a radiotherapy educator please share this presentation with your students; they are the future of healthcare delivery and we owe it to patients to make positive changes.  You can watch Dan’s full presentation here. We would love to hear your thoughts on this important topic, so leave a comment if you have time.

The next in our research seminar series will be a presentation by Professor Laura Serrant on her ‘screaming silences’ framework. Keep a look out on the blog for the link to her presentation coming in December.

Meet the Allied Health Professions Cancer Research Team at Sheffield Hallam.

Welcome to the first in our new blog series from the Sheffield Hallam, Allied Health Professions (AHP) Cancer Research group. Our group of researchers have combined roles as educators and researchers, we combine teaching of under-graduate and post-graduate students with the running of research projects under the cancer (or oncology) theme. In this first blog I’d like to summarise the AHP cancer research group aims and vision, introduce you to the steering group, tell you about our current research projects and highlight what topics and discussions to expect in the coming months on the blog.

Cancer Statistics

Of those people born after 1960 in the UK one in two will be diagnosed with cancer in their lifetime, forty-two percent of cancer cases are preventable(1). In the 1970’s less than a quarter of all cancer patients survived their cancer. Today fifty percent of those diagnosed will survive(2). Of those diagnosed with cancer half will receive radiotherapy, sixty percent of these for curative intent. Radiotherapy is considered one of the most effective cures for cancer, with over 90,000 patients receiving radiotherapy in the UK each year(3).

Our vision

Dignified, evidence based, cancer care delivered by highly skilled AHP professionals.

Our Mission

To deliver high quality research to improve:

• the accuracy and delivery of radiotherapy,
• the patient experience,
• patient engagement in treatment decision-making and self care and
• public knowledge of how to reduce the risk of cancer development.

The Sheffield Hallam AHP Cancer Theme Steering Group

Professor Heidi Probst PhD, FCR, MA, BSc(Hons), DCR(T)

I am the research group lead my main research interests are in breast cancer and the oncology workforce. My research fits with the Allied Health Professions (AHP) cross cutting themes of innovation and technology in healthcare, and improving the patient experience.

I am the chief investigator of the SuPPORT 4 All project; developing a support bra for women undergoing breast irradiation following a diagnosis of breast cancer. I have completed research investigating burnout and resilience in the cancer workforce and developed an intraprenurial pedagogy (through the 2INSPIRE project) to enhance the development of capabilities for service improvement. I am currently supervising 5 doctoral research students (3 projects are linked to breast cancer and two are workforce development studies).

Let me introduce you to the rest of the team:

Keeley Rosbottom MSc, BSc(Hons), PG(Cert)

Keeley is a Senior Lecturer in Radiotherapy and Oncology and undertaking a PhD, her areas of research interest include 3D Stereophotogrammetry as a tool for evaluating the accuracy and reproducibility of new radiotherapy immobilisation devices, and methods to evaluate patient comfort and dignity within radiotherapy.

Cath Holborn MSc, BSc (Hons), PG (Cert).

Cath is a Senior Lecturer in Radiotherapy & Oncology and also Course Leader for the MSc Prostate Cancer Care, at Sheffield Hallam University. Cath’s primary area of interest is the management of prostate cancer and she has a particular interest in the lived experiences of those affected by the disease and the care they have received. Other areas of interest include the role of education, particularly in the post-registration and advanced/specialist practice setting, for individuals working in this field. Cath has recently undertaken a project on behalf of Prostate Cancer UK, exploring the impact of CPD (Continuing Professional Development) and CME (Continuous Medical Education) on patient care and patient reported outcomes.

Laura Pattinson MSc, BSc, PG(Cert)

Laura is a senior lecturer in Radiotherapy and Oncology and course leader for the BSc in Radiotherapy and Oncology at Sheffield Hallam. Laura’s areas of interest are in public health and the role of AHPs. Specifically Laura has had involvement in projects on the impact of lifestyle choices on chronic disease, the role of the Higher Education Institutions (HEI) in the delivery of public health messages, barriers and facilitators to the delivery of public health messages within radiotherapy and the future AHP workforce, smoking cessation strategies in radiotherapy practice and the impact on service users. A new area of interest Laura is developing (through her PhD) is the experience of service users with severe mental health conditions during diagnosis and treatment for cancer.

Gemma Burke MSc, BSc(Hons), PG (Cert).

Gemma is a senior lecturer and the course leader for the PG Diploma (pre-registration) course in Radiotherapy and Oncology at Sheffield Hallam. Gemma’s research interests are Brachytherapy, specifically technical developments, patient care and the management of long-term side effects, and the management of radiotherapy skin reactions, click here for the Society and College of Radiographers guidelines on skin care during radiotherapy for health professionals (Gemma supported the development of these through a systematic review of the available evidence).

Coming next…

The next blog in this series will be available next month and is titled “Breast lymphoedema; why we need more research on this side effect of breast cancer treatment”. You can subscribe to our blog below to make sure you don’t miss out on any future posts. Watch out for our guest blog from Dr David Bottomley from the Leeds Cancer Centre on current developments in prostate cancer.

If you are a health professional or a healthcare student please also look out for our free research seminar series. If you are local to Sheffield feel free to join us in person, seminars run on the first Friday of every month (except where there are Bank Holidays) and take place in the Robert Winston Building at Sheffield Hallam University. We meet at 8.30am for coffee and cake with the seminars starting at 9am (sessions finish at 10am). Attendance is free but you must register to attend as places are limited, details of how to register can be found here. If you are remote to Sheffield look out for the recording of these seminars, the link will be posted here on the blog. Our first seminar in October will be delivered by Mark Collins and Amy Taylor who will present the rationale for their doctoral research and what it is like to be a doctoral student and the career opportunities it offers.

You can also join our free webinars, look out for these they will also be advertised here on the blog along with our ‘Hot Topics podcasts’ on cancer related research.

1. UK CR. Cancer Survival Statistics 2015 [Available from: http://www.cancerresearchuk.org/cancer-info/cancerstats/survival/.
2. UK CR. Beating Cancer Sooner Our Strategy Highlights. 2014.
3. (NCRI). NCRI. CTRad: National leadership in radiotherapy research. . 2014.

Getting Started with Research: The Research Process.

If you are new to research I would always recommend undertaking some study in research methods first to gain insight into the stages of development of a research proposal and to understand the ethical, clinical and research governance regulations that exist to ensure the conduct of health research follows good practice and to ensure the safety of patients.

Most universities will run research methods training programmes as part of undergraduate or postgraduate courses that are a good starting point for learning the basics of research methods and research governance. You can search your local university web pages for research methods training programmes. Health Education England and the National Institute for Health Research also have research training opportunities for health professionals that are worth considering. There is also the e-learning for healthcare training programme for those working in the NHS and new to research. In addition, the UK Health Research Agency also runs training courses on ethics and governance processes for researchers, click here to find a relevant course for you.

As a novice researcher it is always worth referring to the research process when starting a new research project. Click here for a handy reminder of the research process, hover your cursor over the numbered bullets for each stage of the process for more detailed information on each stage of the process.

 

Research Webinar Series

If you work in healthcare you maybe interested in the Journal of Radiotherapy in Practice and Sheffield Hallam webinar series. This is a free webinar series offered through the Sheffield Hallam Radiotherapy and Oncology CPD Anywhere provision, all you need to do is register for the event to obtain the link to the webinar room and access to the journal article that accompanies the webinar.

The next webinar is on Wednesday 7th September at 18.00 (GMT, London, Lisbon) run by Neill Roberts from the St James’ Institute for Oncology (Leeds cancer Centre), title of the presentation is A development framework for the consultant radiographer in oncology: the Leeds experience. For more information and joining instructions please click on the link below.
http://www.slideshare.net/HeidiProbst/slideshelf

Getting Started with Research

If you are a health practitioner and new to research and would like some handy hints for getting started and maintaining enthusiasm, here are some top tips on getting started from some experienced researchers, click on the link below.

 

https://padlet.com/embed/5eqd35rrefk

Created with Padlet

Let’s talk about tattoos

When someone mentions tattoos what is the first thing that comes into your mind?

Do you think of a heavily tattooed man or woman? Your own tattoo perhaps? As a Therapeutic radiographer the word tattoo makes me think of radiation treatment positioning. During the planning for radiotherapy, Radiation Therapists/Therapeutic Radiographers will mark a patient’s skin to indicate a reference point for positioning the patient each day underneath the linear accelerator. More often than not these reference points are made into a permanent mark, a tattoo, using sterile Indian ink and a sterile needle. These permanent tattoos act as a reference point for each radiotherapy session helping to align the patient with the treatment machine with the aim of increasing treatment accuracy.

Radiotherapy tattoos are small; they are less than 2mm in diameter. Images available to view online at CRUK website and here on this personal blog show the actual size. So what’s the fuss? They’re tiny right? So why write a blog about them?

Well here is the problem. While they are small they are permanent, and act as a permanent reminder for many patients of an experience and a time in their life they may want to forget. This quote from a blog by Andrea Hut really exemplifies what many women I’ve come across over the years as a Therapy radiographer express:

“The tattoos themselves are just tiny bluish dots. They’re barely visible, but they are permanent. Nobody told me that. It’s as though they think you wont care because of all the other stuff you’re going through. I’m sorry, but I care about any permanent mark that’s being made on my body. Especially the ones I didn’t choose. Scar or tiny black dot.”

The critical reason for using permanent tattoos for positioning radiotherapy is the belief they provide an accurate guide to positioning of the radiotherapy beams on a daily basis.

So how accurate are they? Set-up accuracy for breast irradiation is dependent on a range of factors including the use of immobilization devices such as breast tilt boards, how the patient’s arms are positioned (one arm up versus two arms up) and support cushions, as well as patient factors (such as breast size). Using tattoos for positioning can enable accuracy of radiotherapy field placement in the region of 2-6mm(1). Where partial breast irradiation is employed accuracy between 3-7mm(2,3) have been reported. Accuracy using semi-permanent skin marks alone have been shown to be comparable to accuracy achievable using tattoos(4) where average systematic errors were 3mm for those patients with tattoos and 3.3mm for those with semi-permanent skin marks. The disadvantage of using semi-permanent marks is the need for the patient to take care when bathing to avoid the marks disappearing; this can cause patient anxiety, and could necessitate a re-planning of the radiotherapy, potentially delaying treatment.

It’s all about choice.

Body tattoos have been a part of human culture for a long time. Initially, tattoos represented a specific aspect of culture either identifying the bearer to a religion, strength or social status. In European culture in the 20^th century body tattoos have been associated with groups such as sailors, and bikers and with the advent of the punk scene they became an expression of antithesis to mainstream culture. The 21^st century has seen a rapid rise in body tattooing; with tattoos no longer seen as solely representing a tie to any specific sub-culture or group. Wohlrab, Stahl, and Kappeler(5) identify 9 different motivational reasons for obtaining a body tattoo:

1. Beauty, art or fashion,
2. Expression of individuality
3. Personal narrative
4. Physical endurance
5. Group affiliations and commitment
6. Resistance
7. Spirituality and cultural tradition
8. Addiction and
9. Sexual motivation

Except when the individual obtains a tattoo while under the influence of alcohol or drugs, the majority of these motivations above represent a personal choice, a reasoned decision to gain a permanent embellishment to their body.

Take Eve for example, here is her tattoo and her motivation for getting it.

“My tattoo is two magpies representing the old saying ‘one for sorrow, two for joy’. The saying is based on the fact that magpies mate for life so when you see two together you know they are happy and in love. Whenever you see one magpie you are meant to salute the bird so that you respect his loss as he no longer has a mate, and I have been doing this since I was little. By having the tattoo I will see them everyday and everyday ‘hopefully’ I will have joy in my life.” Eve

Eve tells us about her decision to get a tattoo:

How long were you thinking about getting a tattoo? 

Eve: “I thought about it for a couple of years as I had to wait until I was 18 years old before I could get it done.”

What made you want something so permanent?

Eve: “I have never been worried about it being permanent, as it reflects my personality and is something I believe in.”

Were you worried about what people would think? If not why not?

Eve: “ I have heard of people talking about people with tattoos as being wayward, however, I do not believe that. Most people now a days are not as judgmental, as more and more people are getting inked.”

Do you think you will ever regret it?

Eve: “No never, it will always reflect that period in my life.”

Eve’s motivation for getting a tattoo is clear, it represents something of meaning to her, something that she see’s will bring her joy and is a part of her personality. Eve’s is just one story, but most motivations for getting a body tattoo reflect a positive connection between the individual and the permanent image they choose. Patients that are tattooed during the radiotherapy planning process have less choice. The permanent dots, although small are unlikely to add or improve their appearance, and for many simply may act as a reminder of cancer treatment. For some cancer survivors they are an unwelcome reminder of a difficult time in their lives. These quotes below from our most recent research highlight the mixed emotions patients with breast cancer experience during the planning of radiotherapy and coming to terms with the notion of having permanent tattoos. (All the names have been changed to protect the individuals’ identity). Emotions and experiences are diverse and serve to highlight the need for healthcare practitioners to understand the individual patient journey:

Gill

“I’ve written a couple of things down there that kind of go back to something that Maryanne said about choice, you know the tattoos and not feeling like you have a choice.”

Sarah

“…when they put the tattoos on so it was all in the same incident, I did feel suddenly there that there was something permanent happening because you know they say these tattoos are permanent, up to then it felt like you know we’ll cut this out, I’ll get better, it’ll go away and then they went no you’re going to be permanently tattooed, I felt like you know you’re going to make me tattooed and marked ………. I did, I felt a real sense of loss at that point and I thought no this is not something I’m going to get through this is something that I’m stuck with and it’s silly really because it’s just tattoos and I’ve got used to the tattoos and I don’t notice them.”

Miranda

“some of these points to an outsider may sound small, like the tattoos, I wasn’t happy with those either, but because you’ve lost you know your sense of self and your confidence it just, you know every little thing even though it’s small like using different cream or something is a really big issue.”

 

The picture is clearly mixed, while there are negative experiences associated with patients having tattoos like those above. The complete picture includes many positive attitudes towards radiotherapy tattoos:

“small, discreet, only a few in number, quite freckley skin anyway, don’t mind needles, nothing to worry about compared to chemo, needed to keep me alive so what’s the problem?”

Some women even choose to change their radiotherapy tattoos into works of art on completion of treatment as this Guardian article highlights. It’s clearly all about choice.

So what are the choices?

Well let’s not throw the baby out with the bath water just yet. Permanent tattoos have been used for many years to mark the placement of radiotherapy beams for a range of cancer sites. For those women that don’t mind having tattoos they remain, at the moment, possibly the best alternative and an option patients can choose. It might be worth Therapy Radiographers/Radiation Therapists considering where they position the tattoos and the number used. Where possible, if tattoos can be positioned where they are less likely to be visible when the woman is dressed in her normal clothes, it may make them more acceptable to some women. In addition, for standard whole breast radiotherapy (where only the breast or chest wall is treated and not the lymph nodes in the neck) what is the optimum number of positioning tattoos that are needed to retain accuracy? There is no research evidence for us to use, and nothing to indicate that five tattoos are better than three for example; so will three suffice to improve the cosmetic outcome?

For those women that don’t want to have a tattoo the use of semi-permanent pen marks is often used with special dressings (that act as a clear skin) to avoid the marks rubbing off onto clothes and to maintain longevity. Semi-permanent marks come with restrictions on washing but can be as accurate as permanent tattoos if application is maintained carefully(4). Some centres have access to 3D surface imaging that can complement patient alignment and enhance accuracy of set-up; unfortunately not all radiotherapy centres have such a facility.

A recent trial has tested the viability of using ultra-violet (UV) ink for permanent tattoos. This option means that the tattoos are not visible in normal daylight conditions and only visible under UV lights that are applied in the treatment room. The use of UV tattoos still requires a needle prick to get the ultra violet ink underneath the skin. However, it may offer a solution in the future, and we await the published results of this recent trial to see the full benefit in terms of accuracy for treatment and acceptability to patients. The use of UV ink for tattooing is a fairly new development and we currently don’t know if there are any long-term risks associated with using UV ink for tattoos. It does also mean that while the radiotherapy tattoos would remain invisible during normal lighting conditions under any ultra violet lighting such as those sometimes used in clubs and restaurants the tattoos maybe visible.

Another future solution that could provide patients with an alternative to permanent tattoos (either indian ink or UV tattoos) is the use of a well fitting immobilisation device where the set up marks are incorporated within the device. This approach is used for radiotherapy application to areas of the head and neck where an immobilisation mask is fitted to the patient and marks placed on the mask rather than on the patient. We are currently developing a support bra for women undergoing breast radiotherapy that may allow for marks to be incorporated within the bra, avoiding the need for skin marks or tattoos on the patient; details of the SuPPORT 4 All study can be found here.

Is there sufficient choice for patients? What’s your view?

References

1. Probst Heidi, Bragg, Christopher; Dodwell, David; Green, David; Hart, John. A systematic review of methods to immobilise breast tissue during adjuvant breast irradiation. Radiography. 2014;20(1):70-81.
2. Gierga DP, Riboldi M, Turcotte JC, Sharp GC, Jiang SB, Taghian AG, et al. Comparison of Target Registration Errors for Multiple Image-Guided Techniques in Accelerated Partial Breast Irradiation. International Journal of Radiation Oncology*Biology*Physics. 2008;70(4):1239-46.
3. Yue NJ, Goyal S, Zhou J, Khan AJ, Haffty BG. Intrafractional Target Motions and Uncertainties of Treatment Setup Reference Systems in Accelerated Partial Breast Irradiation. International Journal of Radiation Oncology*Biology*Physics. 2011;79(5):1549-56.
4. Probst H, Dodwell, D, Gray, J.C, Holmes, M. An evaluation of the accuracy of semi-permanent skin marks for breast cancer irradiation. Radiography. 2006;12(3):186-8.
5. Wohlrab S, Stahl J, Kappeler PM. Modifying the body: Motivations for getting tattooed and pierced. Body Image. 2007;4(1):87-95.