Be kind, be grateful, be happy.

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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.

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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.

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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.

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 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.

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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

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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:

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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.

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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.

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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.

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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