I’ve really valued the emotional support from everyone around me, especially the team at The Christie - Katie Stephenson

Katie Stephenson – Parotid Gland Cancer Patient (Mammary Analogue Secretory Carcinoma)

Katie Stephenson

I’m 30 years old and November 2015 marks four years since I began treatment for parotid gland cancer. 

I live in Chorley, Lancashire and I work in Public Relations for the NHS. I remember the moment I found my first tumour like it was yesterday. It was July 2011 and I was having a lovely lunch in a beer garden in Lancaster (fish and chips if you were wondering!) when I felt a lump on my jaw. Always the hypochondriac, I dramatically said to my friend, "feel this lump, it must be a tumour!"

The lump didn’t go away and after weeks of poking and prodding by various doctors and a few courses of antibiotics in case it was a cyst, I had an ultrasound. I’d done a lot of research by this point and pretty much knew every eventual outcome so when he told me it was a solid mass I was as prepared as I could be to hear that news. After a fine needle aspiration, which basically meant a doctor stuck a tiny needle into the lump and drew some fluid from it to test, the results were inconclusive so I was delivered the news that I’d need a major operation to the side of my face to remove the lump (most likely a tumour) and half of my parotid gland. 

The parotid is part of a family of three salivary glands and it sits just below your ear. Again, I’d done my research and found that salivary gland cancer is rare with approximately 550 cases being diagnosed each year, most commonly in people over 50. The exact cause of this cancer is unknown and in most cases, tumours in salivary glands are benign. 

With any surgery there were also side effects and with mine these included facial paralysis, numbness and problems with the salivary function. Although these were worrying to me, I was only 26 at the time so my main concern was about the gigantic scar I’d have running down my face.

I had my surgery done in Preston and I cried the first time I looked in a mirror. I’m not an overly vain person (my friends might correct me on this!) but I had 40 stitches down the side of my ear and down my neck, a huge dent in my face where part of the gland had been removed and little to no movement in half of my lip. 

Katie post surgery

Despite this I waited patiently for the results of the tests…..I waited and I waited….20 weeks later I was delivered the news that it was a malignant tumour however it had been removed with clear margins which meant that they believed they had got it all. The reason for the delay was that it was a newly described tumour and not many labs had seen one before. Eventually I was given its definitive name; Mammary Analogue Secretory Carcinoma.

Almost a year to the day of finding the original lump, I found, and had removed a second tumour. Luckily this one was a lot closer to the surface and the surgery was nowhere near as invasive. At the same time as this surgery I received Botox injections to my face as I’d developed a relatively rare side effect of the surgery known as Frey’s Syndrome. This is basically a mutation of your salivary glands so instead of your mouth watering on the inside, I was getting a moist cheek – not a good look when you’re stood in front of a tasty buffet and your cheek starts watering!

Following the removal of the second tumour I was referred to The Christie to discuss my treatment options. As it was a relatively recently named tumour there was some uncertainty as to what the treatment should be. At the initial consultation we discussed the different options available to me; further surgery to remove the rest of the gland or a course of radiotherapy, both of which carried further risks and complications. In the end we decided that I would be a “watch and wait” patient, meaning I’d have scans and check-ups instead of treatment. 

This course of action didn’t initially sit well with me. I’d really struggled emotionally during the wait for my initial results and I didn’t think I had the strength and resilience to do it again, but with the support of my consultant we decided to go ahead. I now have bi-annual MRIs to my head and neck and I visit The Christie four times a year for check-ups. I won’t lie, sometimes it’s really hard to just sit back and wait. I check the area every day and I’m just waiting for the time I feel another lump. I did have a scare last year but thankfully it was just scar tissue from my original surgery on the move.

Throughout my experience I decided to document this by blogging (www.apainintheparotid.wordpress.com). I struggled to find a lot of UK based information about the condition so thought I’d share my experiences with anyone else who was going through this too. I post pictures, tips and updates and I find writing about my day, hospital appointments, scar progress (and the occasional whinge) extremely therapeutic.

I’ve also really valued the emotional support from everyone around me, especially the team at The Christie – shout out to Professor Slevin! Whilst I might not be having visible treatment, people should never underestimate the emotional impact a cancer diagnosis can have and the compassion and care from the team at The Christie has been second to none.

After my surgery I was left scarred, unable to smile on one side of my face and feeling very self-conscious. I became extremely anxious and pretty much ate my feelings, putting on over six stone in weight in the process. Over the last 18 months I have really seen an improvement emotionally, and finally managed to get some focus back in my life. I even went back to university to study for a postgraduate qualification, something I could not have imagined doing three years ago. 

If I was to give one piece of advice to anyone reading this who is going through something similar, it would be to never underestimate the power of emotional support. I know all too well how easy it is to retreat and want to deal with it on your own, but please just talk to someone. I’m a very independent person and leaning on others for support didn’t come easily to me but I learnt that this doesn’t make you any less strong or unable to cope and, without that support, I wouldn’t be the person I am today. I have a much brighter outlook on life, my confidence is coming back and I’ve started to shift some of the weight that I’d put on. I’m still a way from eventual discharge (pending no new lumps – fingers crossed!) and visiting The Christie has just become part of my life routine, but without the fantastic support of the team at The Christie, my friends and my family I don’t think I would have come through this so strongly.   
  

How hypnotherapy can help our patients to overcome anxiety, claustrophobia, needle phobia, nausea and fear of pain - Peter Sandy

Peter Sandy - clinical hypnotherapist

Peter Sandy

Why is six scared of seven? Because seven, eight (ate) nine. This is my daughter’s favourite joke and you will find out why this is important when you read on. 

I’ve been a clinical hypnotherapist for eight years. For the last two and a half years I’ve been lucky enough to work in The Christie’s complementary therapies CALMs team with a talented group of experienced therapists supporting patients (and carers) to overcome a varied range of issues such as anxiety, claustrophobia, needle-phobia, nausea and fear of pain. 

I support patients undergoing a range of radiotherapy and chemotherapy treatments as well as MRI and CT scans. Radiotherapy patients are often most anxious during the mould making process prior to treatment and some of our patients need help with cannulation prior to having chemotherapy or other treatments and procedures.

Many people imagine hypnosis to be along the lines of the stage hypnotist in the TV programme Little Britain…“look into my eyes, not around my eyes” * click fingers * “you’re under!” 

Whilst the idea of a hypnotist having instant mind control may be entertaining (even a little scary), the reality is quite different. Nobody can tell you how to think, not even if you want them to. 

Hypnosis is an altered state of consciousness, a relaxing state of internal focus – a bit like daydreaming – where a person can feel calmer and become more in tune with their unconscious ideas, thoughts and beliefs. A skilled hypnotherapist will build rapport and have an understanding of how to use unconscious communication – verbal and non-verbal - to connect with, and then help discover new strategies, changes in emotional levels or alternative ways of thinking. 

We all have a vast collection of useful past experiences - some are easily remembered and some are buried deeper. These inner resources have been acquired over the years (like humour, stubbornness, intelligence, and a plethora of problem-solving skills), and the ability to imagine different ways of coping in the future. Hypnotherapeutic processes explore and utilise these pearls, and we are able to anchor and recall powerful resources using gestures, colours, words or aromas. 

There’s an old saying: “Give a man a fish and you feed him for a day, teach him to fish and he can feed himself for life”. The CALMs team can teach a variety of techniques and methods to help people become less anxious and feel calmer. This in turn can provide a long-term benefit, not only to the patient but also to everyone involved.  

If a patient is struggling with anxiety, we come alongside and invite them to try different self-soothing techniques to help them regain some control. Normally a patient who is panicking will be over-breathing so the first thing we might teach is a simple breathing technique, like breathing round a square shape to slow it down and keep it steady. We may ask them to close their eyes and vividly remember a special place and re-experience how they feel in that place (calm, relaxed, resilient, empowered) then use an aroma, object or even a hand gesture to retain and recall (anchor) the feeling. 

One of the things I really enjoy about working with patients is how often they teach us things.

I saw an 80-year-old man a few weeks back who was suffering from breathlessness. He was already halfway through radiotherapy on the lung and began the session looking out of sorts, slightly bent posture, struggling to breathe steadily. That was until we got onto the subject of Karate, of which he is an expert, and before I knew it, he was on his feet, chest out, showing me how to breathe in a way that allows you to take a punch to the stomach - which comes in handy when you have three kids! We swapped breathing techniques and this inspirational man quickly picked up how to do self-hypnosis so he can re-enter a useful relaxed state whenever he needs. 

Many of the radiotherapy patients we support will be receiving treatment focussed on the head and neck, lung or breast areas and they often have something in common – claustrophobia, the fear of confined spaces. 

Claustrophobia affects one in ten UK adults and, if severe, it can result in a full-blown panic attack. This type of phobia is awakened if the patient is required to wear a special mask that is closely moulded over their head, neck and shoulder areas and worn during each treatment to ensure they remain in exactly the same position for every session. Although this mask is an essential tool for the accuracy of treatment it is a very snug fit (and doesn’t look pretty either) so it’s not surprising that patients with high anxiety, pain, breathing issues or claustrophobia struggle to even have the mould made. 

Being able to help a patient get through the mould-making stage as smoothly as possible is important as it can reduce anxiety and make a significant difference to how that person feels about their future treatment. 

There are a number of ways we can help. I was asked to help a patient who suffered severe claustrophobia combined with neck pain issues from surgery who was shaking and hyperventilating in the waiting area outside the mould room. I recognised the signs of panic and quite naturally felt some of her anxiety rise in myself. As we spoke, I allowed my breathing rate to match hers so I could begin at her pace, and I invited her to take a sip of water and hold it in her mouth as research suggests that having a moist mouth tells the brain “you’re doing ok”. 

Next, I asked her to focus her attention on steadily clenching and then relaxing two squashy ‘stress-ball’ yellow stars in tune with her breathing, keeping in harmony with her as I slowed my own breathing and softened my voice. 

We agreed ways in which she could feel more comfortable and in control by establishing a clear stop signal. 

We discussed how she would like to feel in charge when we began to make the mould. We also spoke about things other people had found helpful, like slowly counting numbers down from 200 or focussing on rotating the yellow star and visiting places in her mind. We worked on releasing tension in her feet and legs by tensing and relaxing the large muscle areas involved in the fight-or-flight instinct.

Throughout the process, I continued to hold her hand and give her steady voice contact updating her on the mould process and directing her attention to all manner of other things. 

Having successfully completed her mould and the following CT scan, she thanked the radiologists and me and even laughed at my daughter’s favourite joke!

The Board of The Christie is focused on making it a world leading centre for cancer care and research - Kathryn Riddle

Kathryn Riddle - Christie non-executive director

Kathryn Riddle

I joined The Christie Board as an interim non-executive in May 2014 and became a substantive member of the Board a year later. From the very first day I was hooked!

I have been involved with the NHS as a non-executive for over 20 years, but in all that time I have never been directly involved with a hospital and I am delighted to have put that right.

The Christie is a very special place and part of that is undoubtedly because it is a specialist hospital. In other roles I have visited many hospitals and noticed that specialist hospitals or units have unique cultures because of the very specialised nature of their work.

Having said that, The Christie is both unique and very very special.

What makes it so special?

The staff and the patients undoubtedly, but also the volunteers and the people from Manchester and the surrounding areas. If I get a taxi to The Christie, within minutes the taxi driver is telling me how wonderful the hospital is and "how lucky we are to have such a great place on our door step." I have never encountered that sort of praise and loyalty anywhere else!

One day I had lunch in the hospital dinning room and found myself chatting to the man opposite. We both thought the cheese pudding was excellent! He told me that he came to eat here once a week because his wife had been a patient at The Christie for several years and they had made friends and grown to love the place. Now that she was no longer here, being back at The Christie made him feel close to her and he liked to check that the food and general feeling of the place was just as good as it had been for his wife.

The Board of The Christie is impressive, vibrant and totally focused on making the organisation a world leading centre for cancer care and research,  where patients feel safe, comfortable and reassured that they are ‘in the best place '.

The Governors from different surrounding areas want the very best for the patients and are rightly proud and protective of The Christie’s name and reputation.

I have been part of some appointment panels for new staff and have been hugely impressed by the calibre of people being interviewed, not only for their clinical expertise, experience and backgrounds, but for their genuinely caring and compassionate natures. Values matter!

I spent one lunch time with the director of nursing and quality, seeing how protected meal times work and the careful choice of food and quantities all tailored to individual patients’ needs.

On another walk about with fellow non-executive directors and staff, we discovered that chemotherapy treatments are also tailor made for individual patients - an absolute revelation which made me realise that I have so much to learn.

I love the gardens at The Christie, alongside the glass corridor, which are beautiful to look at and full of patients, families and even some staff on sunny days!

The volunteers and Friends of The Christie are truly amazing in their dedication and their extraordinarily imaginative ways of raising money. Bike rides, runs, abseiling, coffee mornings and evening events of all kinds to say nothing of the culinary expertise (my kitchen cupboard is full of Jean's special preserves! Her bramble jelly is just fabulous!) Like other members of the Board I am a Trustee of The Christie charity and I have been so impressed by the generosity of people who want to support the hospital. Through legacies, donations, and imaginative fundraising, thousands of people contribute to the work of this wonderful institution, and every single donation whether it be large or small is very much valued and appreciated.

This is a truly remarkable place, made so special by the people who work here and the patients they serve. I am proud to be a part of it and I have thoroughly enjoyed my first year on The Board.

As The Christie has played such an important part in developing radiography we are very proud to celebrate World Radiography Day - Rebekah Pearce

Rebekah Pearce - Christie Radiotherapist

Rebekah Pearce

World Radiography Day is celebrated on 8th November each year. Held annually, it provides an opportunity for radiographers worldwide to celebrate their profession, its importance within patient care, to promote the career to future students and increase public awareness of diagnostic imaging and radiation therapy.

So what is a radiographer and what do we do?

There are two different professions that share the umbrella term of ‘radiographer’ – diagnostic radiographer and a therapy radiographer. A diagnostic radiographer helps to diagnose any disease or condition and monitor internal changes. This is vital in diagnosing cancer and we have some very high tech facilities available at The Christie.

A diagnostic radiographer may use X-rays to look at bone anatomy assessment and cavity changes, to check if a bone is broken and if there are any foreign objects in the lung cavity; or they may use fluoroscopy to look at real-time images of the digestive system. Radiographers also use MRI and CT scans to build up two and three dimensional maps of body tissue; and angiography can be used to assess blood vessels. Ultrasound, most commonly used for checking the development of a baby during pregnancy, also has important applications at The Christie.

Therapeutic radiographers, or as they are better known, radiotherapists, work within the hospital oncology department. They use radiation to treat many different forms of cancer all around the body. This includes conventional External Beam Radiotherapy (EBRT) delivered by multi-beam treatments; brachytherapy where the radiation source is placed directly in the affected area; and stereotactic radiotherapy that allows small inoperable tumours to be treated in high dosages. 

For both types of radiographer, their knowledge base must include extensive understanding about the usage of high tech equipment, radiation dosages, pathology, anatomy and physiology of the human body. Moreover, the radiographer must have a caring personality. 

As The Christie has played such an important part in developing radiography over the years we are very proud to celebrate World Radiography Day and the vital work done by all radiographers around the world.

In 1901, The Christie was one of the first places to use X rays to treat cancer and in 1932 we developed the first international standards in radiation treatment – the Manchester Method. More recently, in 2002 we were the first place in the world to use image guided radiotherapy.

World Radiography Day is celebrated on 8 November to mark the anniversary of the discovery of x-radiation by Wilhelm Roentgen in 1895. Wilhelm experimented with passing an electrical current through a low-pressured gas which culminated in discovering and producing an electromagnetic radiation in the wavelength range now known as x-rays. 

He noticed that a number of objects could be penetrated by these rays, and that the projected image of his own hand showed a contrast between the opaque bones and the translucent flesh. This work resulted in him winning the Nobel Prize in physics.

He later used a photographic plate instead of a screen, and an image was captured. In this way, an extraordinary discovery had been made: that the internal structures of the body could be made visible without the necessity of surgery.

As World Radiography Day was on Sunday we decided to celebrate it in the hospital today with an information stand on display in the radiotherapy department with details about radiotherapy, how it works, how treatment is planned and examples of machinery.

Have you thought about a career as a therapy radiographer working in radiotherapy? If you are interested in finding out more details, please email RTEducation@christie.nhs.uk

Helping you to help yourself – our new web project will provide patients with an aid to managing their life with cancer - Dr Michael Leahy

Dr Michael Leahy - Consultant Medical Oncologist

Dr Mike Leahy

I'm delighted to announce the launch of a new project at The Christie which will provide patients who are living with advanced cancer access to a self-guided care plan to run alongside any medical treatment for their cancer.

The inspiration for this project came from the number of patients who kept asking consultants like me if there was anything else they could do to help themselves live with cancer.   

Alongside the modern up-to-date medical therapies being provided at The Christie, many people are interested in what else they can do to help themselves through diet, exercise, complementary therapies, talking therapies, mind and spirit and other activities.

A little research among patients attending one of our clinics demonstrated that many patients are already seeking out information on self-care for themselves, with many trying out something that they feel will be of benefit - from dietary changes to counselling or aromatherapy. However, our patients have told us that they feel there is more we could do in terms of giving advice and helping them make wise choices amidst the many therapies or products on offer that make claims of benefit.

It may surprise readers to know that there is increasing research showing that a well-rounded health and wellbeing programme focussing on improving and enhancing general health can have a significant impact, not only on quality of life, but also on survival. It seemed to us that there were things that people were missing out on that they could do to help themselves and we decided that, as their oncology team, we ought to be giving this more attention.

We applied for funding from the Manchester Cancer and Macmillan Innovation Fund for a one year project to develop a programme for patients with advanced stage cancer.  We were successful in our application and our project manager Liz Islam, started work in September.  We now have a year to construct a pilot programme, develop an interactive website and evaluate it with a group of patients. The working title for this project is PlanBe. 

The reason behind the name is that getting cancer is no-one's Plan A, but this programme is much more than a second thought - it is about being as well as you can for as long as you can; about being more in control of what is happening to you; about being more in the moment; about the idea of being responsible for your wellbeing.

We are really interested in people's comments and suggestions to help us in this project. What other activities do you participate in besides your cancer treatment? What have you found that has been really helpful, or not so helpful?  And, if you are living with advanced cancer, what help and advice about your PlanBe would you find useful? We'd love to hear from you about this project and what you think, so please email the project team at PlanBe@christie.nhs.uk