What I wish I’d known before radiotherapy

Are you about to start radiotherapy as part of cancer treatment? Cancer treatment of any kind can be a daunting experience, so we’ve consulted the Shine Cancer Support hive mind to ask: what do you wish you’d known before you started radiotherapy? Read on for our members’ words of wisdom! 


1. I wish I’d… checked out the treatment centre

Any hospital appointment can be stressful – especially if, thanks to cancer, you find yourself there almost every other day. Not knowing where you’re going, or what you’ll find when you get there, can add to the anxiety. Many of our Shine members said that they had been offered tours of their radiotherapy centre before treatment which helped them to prepare both mentally and physically. If you haven’t been offered a tour, it’s always worth asking for one. Don’t be shy about explaining why you would like to see the treatment area beforehand – if you think it will make it easier for you to handle the treatment, it will also make it easier for the staff to administer it. Everyone wins!

A short tour will enable you to ask specific questions about your type of treatment. Sarah, who had head and neck radiotherapy, found having to wear a mask for her treatment the most difficult bit, but she learned that ‘they can adjust it if you need it’.

2. I wish I’d… known what to wear

What you are able to wear to radiotherapy will depend on which area of your body is being treated. It’s likely that you will need to remove some of your clothing, but you may want to dress in a way that means you have to take off as little as possible. And don’t take off too much! One of our Shine members learned the hard way that she didn’t need to remove her underwear to receive pelvic radiation…

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It can get chilly in the radiotherapy room…

Our Shine community agreed almost unanimously that it gets very cold in the treatment room! If you need to take off your jumper and you start to feel chilly, know that you can always ask for a blanket.

3. I wish I’d… known that it would take a while

It might not take very long for you to get ‘zapped’, but you will still find yourself hanging around for a while. Shine member Becky says that ‘although treatment only takes a couple of minutes, you can be lying on the hard bed for 30mins+ while they set it all up!’ Alison says that for her treatment, ‘the waiting is even longer than chemo.’

Waiting can be particularly difficult. Pauline says ‘I wish I’d been told to leave my dignity at the door!! A group of people will be chatting away like you’re not there (but actually lying half-naked) and then they’ll be getting their protractors out and doing sums!! (“87”, “2.1”, “84.9”).’

Finally, a tip for speeding things up if you’re having pelvic radiation: let it rip! One of our Shinies says that ‘any “air pockets” in your bowels can slow down the process!’

4. I wish I’d… applied cream more effectively

You will be advised to apply creams, such as aloe vera or E45, to the affected areas to help with radiation burns. Ask your team which topical lotions or ointments they would recommend.

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Keep the cream handy

Emma, who had radiotherapy for breast cancer, says ‘I wish I’d been shown exactly where the treatment would hit. I was very good at using cream, etc. where I thought it was, but I didn’t know there was a part of my neck that would be treated, and this ended up with a horrible burn that is still scarred.’ One Shine member said that her radiotherapy treatment also burned the skin on the other side of her body, which she hadn’t expected. Check with your radiotherapist about where you should apply cream, and when.

Shine member Meera wishes that ‘they’d told me to use aloe vera on the skin before the burns started, not after.’

5. I wish I’d… been warned about the side effects

If you haven’t been told already, ask what types of side effects you can expect from radiotherapy treatment. Many people experience nausea and fatigue, for example, but you might experience other side effects depending on the location of your treatment.  Fiona, who had pelvic radiotherapy to treat bowel cancer, says ‘I would definitely say that you need to plan your life so you’re not far from the loo during treatment. Especially if you have a drive to work after being zapped each morning. I got to know the petrol station loos en route really well.’ Macmillan offers a free toilet card that might be helpful in situations where a public toilet isn’t available.

Georgina, who had head and neck radiotherapy, recommends stocking up on ice cream, or anything else that might be able to soothe a dry cough, or alleviate any swallowing difficulties. If you are having other types of cancer treatment, such as chemotherapy or immunotherapy, at the same time as radiotherapy, there may be certain foods that you can’t eat. If you’re looking for something soothing to eat or drink, you might also want to ask your oncologist what they recommend.

Katherine says she wishes she’d known that ‘surgery scars tighten up after they are zapped.’ Ask your medical team if they have any suggestions for alleviating pain or discomfort from this, or from any other radiotherapy side effects.

Shine members also shared a number of long-term side effects that they hadn’t anticipated – for example, Pelvic Radiation Disease. After head and neck radiation, Shinies reported long-term effects on their eyes, swallowing muscles, and salivary glands. Ask your team whether they anticipate any long-term side effects, and what you – and they – might be able to do in order to minimise the risks.

6. I wish I’d… known how other people would react

If you’ve had any type of cancer, chances are you’ve experienced some strange reactions from friends, relatives, or the lady who lives down the road. One Shine member who received radiotherapy said that some people thought she was now radioactive, and ‘dangerous to be around’ during treatment. Others reported that people who hadn’t been through a cancer diagnosis didn’t seem to think that it was a big deal: ‘oh, it’s only radiotherapy.’

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Other people’s reactions can be distressing

If someone you know is struggling to understand how radiotherapy treatment is affecting you, you could direct them to articles (such as this one!) that provide some background. Macmillan, Cancer Research UK, and Cancer.net have some helpful resources.

Alternatively, if you’d simply like a place to vent about the latest comment you’ve received, you can check out our private Shine Cancer Support group on Facebook and find lots of sympathetic ears!

Do you have any more tips for people about to undergo radiotherapy? Let us know in the comments! 

Getting the most out of your medical appointments: more tips from a Consultant Oncologist

 

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Meet Richard!

Following on from his last blog post about preparing to meet your oncologist, Consultant Oncologist Richard Simcock writes about the best way to start a consultation with your doctor – and ways you can follow up afterwards.

 

 

 

 


Signposting

If you go to a show you normally know what you’re going to see. Have you ever seen a film or play where you literally knew nothing at all about it before it started? You were likely to have been initially bewildered as you got your bearings. Arriving at a consultation knowing what to expect means less confusion: it allows you to get straight to the substance. It is good practice for a healthcare professional to explain the purpose of the meeting (‘Today I want to explain your radiotherapy treatment’ etc.), but that isn’t always the case.

A reasonable question to ask is ‘What are you hoping to discuss today?’ This also gives you an opportunity to highlight any areas that you know that you want to cover and leads to better time prioritisation. If a follow-up meeting is being arranged, then asking ‘what would you expect us to discuss at our next meeting?’ leads to even better preparation.

Ask for Copies

After almost every clinic consultation a letter will be written. These letters have multiple purposes: they inform the referring clinician, they may be a request (e.g. ‘please prescribe drug X’), and they also act as a record of the meeting (much better than a scrawled note in undecipherable handwriting!).

Eighteen years ago, the NHS plan recommended ‘patients should as of right receive copies of all correspondence between health professionals about their care.’ This was enshrined in the 2015 NHS Constitution. Copies of letters written about you will be sent automatically in most cases. If you’re unsure whether and how this happens, it’s reasonable to check just in case it isn’t yet routine for the doctor you are seeing: ‘Will you send me a copy of the letter you send to my doctor?’

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Try filing your own notes

Not every patient wants their letters, and if you wish not to receive a copy you should make that clear too, in case letters are sent automatically.

In my opinion, far better is a letter written to the patient first and foremost. This should avoid issues with jargon and misunderstanding, but it’s also a part of patient-centred decision-making. The Academy of Royal Colleges recently produced a report (‘Please Write to Me’)  with a  ‘How to..’ document for doctors around writing directly to patients, and I’m hopeful that this will become increasingly standard practice.

You are entitled to copies of results and reports too. This can be problematic as these are almost always written in the dense jargon of the specialty. Breast Cancer Care produces a guide to understanding a breast cancer pathology report and there are other online resources for other cancers. Asking for a summary of what the report means is very reasonable, but asking for a tutorial on the meaning of every word may not be the best use of precious consultation time. As we move to a time where patients will (hopefully) be able to access more of their own data via portals, medical specialists will need to produce more readable report summaries.

Key worker

You should be allocated a ‘key worker’ – this will most often be a clinical nurse specialist (CNS). Many CNS are highly expert in their field and will know answers to all the common questions, and most of the complicated ones too. They can be invaluable in helping you navigate what is happening before, during, and after a consultation. They will often help patients ‘debrief’, particularly if a clinic meeting has been complicated or upsetting. Key workers are there to act as your advocate and help you to get the best, most personalised care. If you know that you have a lot of questions to ask, then first flag this with your key worker before a meeting: your key worker will be able to answer many questions for you, as well as prepare the doctors in the clinic and potentially organise a longer slot.

Macmillan helps to support over 4300 CNS in the NHS and yet we know there are still inadequate numbers. This means not all patients will get the CNS/key worker access they need or deserve. It is always reasonable to ask ‘Do I have a key worker/CNS? And how can I get hold of them if I have questions?’

Occasionally, a doctor-patient relationship is not good.  Communication will be poor as a result. Every doctor can have a bad day when they perform less well, but if you think you are not able to have a good meeting with a doctor attached to your care then this is an issue that your key worker should be able to handle sensitively. Key workers can often help by arranging another member of the team to see you where possible.

Second (and third and fourth) opinions

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Your case is reviewed by multiple doctors

It is standard within the NHS that all newly diagnosed cancer cases are discussed by a multidisciplinary team of professionals. I attend two of these meetings a week. In the Head and Neck cancer meeting, I sit with two other oncologists, a consultant radiologist and pathologist, three specialist nurses, three dieticians, two speech and language therapists, a consultant dentist, a specialist radiographer, and six consultant surgeons and trainees. We discuss every case, and multiple different approaches to the patient’s problem. Later in clinic we will meet the patient and present a summary view. The ‘first opinion’ is often the combination of multiple expert opinions.

You might want to ask ‘Has my case been discussed at the MDT and were any other options discussed?’. This might be particularly important if there are different possible treatments.

Records of the MDT discussion are also available.

Despite these multiple opinions you may still feel that you would like another team to consider your case. A second opinion can be arranged by your treating team (hospital to hospital) but the mechanisms by which hospitals get paid mean that it is often preferred if the request for another opinion comes from your GP. Transferring clinical information and the masses of data contained within scans can now usually be achieved instantly and electronically. Be aware that another opinion will inevitably lengthen the time before treatment can be delivered.

Research and Trials

Research in cancer is vital to drive innovation and improve survival. Clinical centres that engage in research may produce better results (this has been shown in recent radiotherapy trials), perhaps through more detailed systems of quality assurance.

You may be offered the opportunity to take part in a clinical trial, but if you are not then a good question to ask is ‘Are there any clinical trials for my situation in this hospital?’

If there are no local trials then looking at the National Cancer Research Institute website and their Portfolio Maps for a specific cancer will show what important questions investigators have about treating that disease.

If trials are not available locally it is helpful to ask if there are other accessible centres that are running relevant research. This information will usually be available to your team although you will have to consider carefully if the promise of a trial justifies the burden of travel to a centre further away from home.

Conclusion

There is a whole science devoted to analysing different styles of doctor-patient communication and ultimately doctors want the meetings with their patients to be effective, efficient, and friendly.

‘Communication’ has a double meaning – it can also mean a connection between places, a route or a bridge. Good communication should be able to take you somewhere new: bring you to a new point of awareness or knowledge. I hope these tips help you make the best use of those vital minutes, so you have maximum opportunity to arrive at the best possible destination of understanding.

Richard tweets as @BreastDocUK. He is a Consultant Clinical Oncologist at the Sussex Cancer Centre. 

Getting the most out of your medical appointments: tips from a Consultant Oncologist

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Consultant Clinical Oncologist, Richard Simcock

We’ve all been there: you spend weeks stressing over an upcoming appointment with your medical team – but you walk out feeling like you forgot to ask three of the four Very Important Questions you had and you’re not sure you made the most of the precious minutes you were allocated. While at Shine we’re used to seeing things from the patient’s point of view, we thought it might be useful to hear from someone on the other side of the table – what do doctors think about making sure those stressful appointments go well?

We were very happy that Richard Simcock, who is a Consultant Clinical Oncologist at the Sussex Cancer Centre, took on our blog challenge.  In the first of two blogs, he shares some of  advice about getting the most out of your face-to-face meetings with your oncologist. Please do share – or let us know if you think he’s missed anything!

 


As a Consultant Oncologist, a large part of my week is spent in clinics where I talk and listen. I have a schedule that averages around 40 appointments a week. Visits are listed between 20-40 minutes but can range from 5-90 minutes and more.  There’s a lot to get through in this short amount of time. In this environment, it’s easy to forget that a patient may have been waiting days, weeks, or even months for this conversation. The conversation itself is not evenly balanced: on one side is a healthcare professional under time pressure but with (hopefully) the answers and on the other, a patient with much on their mind and the greatest possible personal interest in the outcome. If this weren’t difficult enough, there’s the extra complication of a whole new language. Here is a place where ‘stage’ has nothing to do with actors, ‘progression’ is a bad thing, ‘negative’ nodes are a positive and the drug names seem deliberately difficult.

It’s not surprising then that many patients find clinic meetings unhelpful and sometimes a source of frustration and even anxiety.

Lots of things can conspire to make it more difficult (such as time pressure, or bad news), but there are ways in which you can be surer that a consultation will be effective and useful for you.

In the next two blog posts, I’ll take you through a list of things which I think are helpful. First up: four ways to prepare for the consultation.

1. List your questions

Memory is a fickle thing – that essential question that popped into your head uninvited at 3am is likely to be difficult to recall by 9am, and absolutely missing without trace by the time your appointment comes around. The question that was on the tip of your tongue may be kicked to a distant corner of your brain if the doctor starts asking about your bowels. Don’t take the risk of forgetting an important question: write a list.

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Make a list!

A doctor will not be irritated by a list. A careful set of questions can be really helpful in a consultation and helps manage time and concerns effectively. A list avoids the inconvenience of ‘oh, I just remembered one last thing’ (some people can manage to have multiple and separate ‘one last things’). More inconvenient still is to have to contact the patient again days later because ‘they forgot to ask….’ This is really time-consuming for everybody.

I mention lists of questions first – because so should you.

Introduce your questions early to help plan the time: ‘I know that you need to go through some things with me today, but I also have some questions I’ve written down. Is it OK if I tell you what these are at the beginning?’

Many doctors will prefer to know what the questions are at the outset as they may be able to answer them in the course of their usual conversation.

Try to order your list: are these questions about a clarification, current treatment, or what happens next? Grouping helps to deal with them efficiently. Also try to think what priority these questions have – particularly if you have lots. In a time-sensitive situation and with a list of 30 questions, it may be reasonable for a doctor to ask ‘which of these are the most important for us to deal with today?’

2. Bring someone

asking-beautiful-brainstorming-601170It isn’t always possible to have someone with you in clinic, but it can be really helpful. It’s too easy to end up in a consultation somewhere very different from where you expected to be (after bad news, for example). A friend or relative is likely to be calmer and can remind you of important details. They can also act as your secretary, as you will see.

3. Record

You wrote down the questions, so shouldn’t you record the answers? The answer is definitely ‘yes’ (and you shouldn’t need to write that down). You can’t remember everything that is said no matter how hard you try. The average brain can probably only keep around four things at once in it, for around 30 seconds, and 40–80% of medical information is forgotten immediately after a consultation.

You don’t need to come to your appointment with a stack of notebooks and leave with writer’s cramp – it can be unhelpful for patients to write their own notes. If you’re trying to capture every word, scribbling furiously like the last five minutes of your school English exam, you will miss details. Bring someone who can take notes while you focus on what’s being said.

Less stressful than writing is recording. An audio recording of the consultation is the perfect way to ensure that everything is captured, and nothing is forgotten.  In my department we have been recording consultations for patients since the 90s, using tapes and CDs. We have found it to be enormously helpful.

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You’ve probably got a voice recorder with you already

These days, almost everyone carries a portable recorder around in their phone. Both Android and iPhones/iPads have voice recorders as standard and they are easy to use. Make sure you know how it works before the clinic and test the settings – it’s a clinic, not a sound-check! Once recorded, these sound files can then be emailed anywhere, e.g. to a relative overseas.

There are also useful apps that allow you to add questions before the clinic and then record the answers for future reference. The OWise App is aimed at UK-based breast cancer patients, and the Cancer Net App is produced by the American Society of Clinical Oncology for all patients (although with a US bias in the information sections). These recordings are secure to your phone, which is a good way to protect privacy, but means they that cannot be shared as widely as simple sound files.

Finally, remember to ask your doctor before you record the meeting. Secretly recording a consultation is legally permissible but should be avoided – it suggests a significant breach of trust and a sense that doctor and patient are not on the same ‘team’.

Richard Simcock is a Consultant Clinical Oncologist at the Sussex Cancer Centre, with particular expertise in breast and head and neck cancer. He also works as a Consultant Medical Advisor for Macmillan Cancer Support.

He is a member of the National Cancer Research Network subgroup in psychosocial oncology and he is interested in research which improves the experience of people living with cancer. He was part of the James Lind Alliance Priority Setting Partnership that established the Top 10 priorities in research for people living with and beyond cancer.

He has been involved in communication skills training for healthcare professionals for many years, but still learns something new every week.

In his next blog post, Richard shares some more tips and tricks for the meeting itself, as well as some ideas for seeking further opinions and learning more about clinical trials. 

Richard tweets as @BreastDocUK.

Shine takes cancer support to Yorkshire!

Linz was diagnosed with Triple Negative Breast Cancer and the BRCA1 gene just after turning 38, and she’s passionate about bringing people together to help deal with cancer. In this post, she writes about her first Shine event: a weekend away with Shine North East in the Yorkshire Dales.


The weekend was full of promise: I was coming to this event as a newbie, all the way from Edinburgh to gate-crash a weekend of ‘folk like me’. The setting was a lovely holiday home called Springwood Cottage near Huddersfield, and the background music was the soundtrack from ‘The Greatest Showman’. The idea was simply for a group of young adults with cancer to share a cottage for the weekend: no plans, no itinerary, no rules, and no barriers.  All just pitch up, pitch in, and enjoy ourselves.

I had come across Shine Cancer Support only a few months previously, just by doing a search on Facebook.  I am a member of various cancer support groups on Facebook and Twitter, but aside from a lovely lunch ‘tweet up’ in Manchester a few months back, I had not actually engaged much with other people going through cancer treatment. There certainly isn’t much for us ‘in-betweeners’ aged 20-50. Talking to people online is great but meeting up in person is so much better! In total there were going to be 17 of us on this weekend – all walks of life, all different types of cancer and associated treatments.  All in all, a lovely bunch of people who are much more than the ‘cancer tag’!

After getting there, two of us went for coffee and cake as we waited to pick up some of the group from the train station five minutes away.  Finding the train station was easy but finding my way back to the cottage each time meant a little detour… oops!

Friday evening was a relaxed affair, introducing ourselves and getting ourselves set up in the rooms.  The location itself was amazing as we had our own hot tub, as well as a rooftop patio!  For some, the thought of sharing rooms with strangers was possibly a little odd at first, but actually it all turned out grand. Dinner was spectacular, and after a few drinks of own choosing we all attempted the icebreaker of making ourselves a cardboard crown with various craft materials.  Some people are exceptionally talented in this area. I am clearly not!

It was really interesting to talk to people about what cancer they have/had, and the treatment plans and side effects/consequences of treatment they experienced.  It was also good to hear about their personal lives, both pre- and post-diagnosis.  To be quite frank, I am at that stage where I question everything about my life, who I am, and what I want to do now. For a little while I had become quite insular and cancer was all I could focus on.  But even more important for me over this weekend was actually to see and hear how other people live their lives post-diagnosis and treatment, in terms of families, holidays, adventures, and work.  dsc_0584.jpg

Given that this was very much a weekend where everyone pitched in and helped, it was almost like an episode of ‘Big Brother’ without the cameras…! In a non-threatening, non-competitive way, of course!

Saturday was relaxing, too. First off, two of the women produced a spectacular cooked breakfast. I honestly don’t think I have eaten so well anywhere!

Afterwards, a beauty therapist visited to offer sessions ranging from facials and massages, through to reflexology, for those who were interested.  Some of us decided to take a few cars over to the nearby town of Holmfirth, West Yorkshire, which is where ‘Last of the Summer Wine’ was filmed.  There was actually a folk festival on that day, and it was great to soak up the atmosphere and find a wee secluded beer garden, then search for ice cream. Other people in the group opted to walk around and soak up the wonderful weather that we had that weekend too.

Later that night, after another amazing dinner, most of us sat down to watch Eurovision and play some games.  Many of us also took the opportunity to jump into the hot tub and let any lingering strains and tensions melt away…

Sunday morning saw another spectacular cooked breakfast before some of us took a gentle meandering walk up the road.  A Sunday roast completed the weekend for me, before I headed home into the sunset…

Overall, it was a great weekend, and I feel that I have made some new friends that actually get everything I have experienced and inspire me to get through the post-treatment slump. It was also not all about the cancer! We laughed and joked, and I even managed to use some of my professional skills to help others, too.

If you’re ever thinking about coming to an event like this one, then I would definitely recommend it!

I’d like to say a HUGE thank you to Shine North East network leader Rachel, who organised the whole weekend.  She’s a special and wonderful person who is spectacular and lovely and kind. Thank you for letting me come!  I know how much effort it takes to organise an event like this, and that makes both Rachel and Shine very special indeed.

Melanoma: more than ‘just skin cancer’

In this blog post, we’re bringing you a cancer experience story written by Caroline, a member of our community who was diagnosed with a rare form of melanoma at the age of 29. She’s keen to raise awareness of skin cancer and share the impact that it has had on her life. As always, please share this blog post and let us know what you think!


I’ve been worried about developing skin cancer since I was 14 years old. I had been stocking up on my favourite fruit-scented toiletries from a certain well-known beauty retailer, and the shop assistant had slipped a leaflet on sun protection into my bag. I’m pale, red-haired, and freckled – and since reading that leaflet, my delicate skin has barely seen the sun. I cover my shoulders in summer, wear sunscreen in winter, and pride myself on staying as white as possible. So how did I get skin cancer?

Mucosal Melanoma

I was diagnosed with mucosal melanoma, a rare form of skin cancer, in May 2017. I was 29 years old. Mucosal melanoma develops on mucosal tissue such as that in the nose, mouth, and sinuses, or in the gastrointestinal tract. In women, it can develop in the vagina, and on the vulva. In men, it may be found in the penis. I’m not going to tell you where my small tumour appeared – but suffice to say, you’re unlikely to see any of my surgical scars!

I spotted a suspicious growth in December 2016, but it took several months – and several

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Guest blogger, Caroline

doctor’s visits – before I had a biopsy. It’s hard not to feel angry about weeks of missed diagnoses, but my disease is so rare that I can’t blame the doctors who dismissed my symptoms. However, I knew that something was wrong, and I’m glad I persevered with return visits until I finally had a diagnosis. I learned early on in my cancer journey that there is nothing more important than being your own advocate. Melanoma can spread quickly, and more than one medical professional has told me that if I had not kept returning to clinics, I might not be here now. It’s a sobering thought.

Initially, my treatment plan was the same as the treatment plan for cutaneous melanoma (the one with the moles): I had a surgical biopsy to determine the diagnosis, and then went back into surgery a few weeks later for a wide local excision and a sentinel node biopsy. The wide local excision involved taking a larger section of tissue from the area around the tumour to make sure that there were no more cancerous cells. For the sentinel node biopsy, two lymph nodes in my groin were removed and tested for melanoma cells. Thankfully, there was no melanoma in my lymph nodes – but if there had been, my diagnosis would have been changed from Stage II mucosal melanoma to Stage III, and I would have had advanced cancer.

Unfortunately, my wide local excision found some more melanoma cells in-situ (pre-cancerous cells, which have the potential to develop into cancer) – so a few weeks later, once I’d healed, I was wheeled back into surgery for a third operation. Then, once I’d healed from my third operation, I had a fourth. And then a fifth. Each surgery delivered the same result: a small area of amelanotic melanoma in-situ. ‘Amelanotic’ means that the melanoma isn’t pigmented. In fact, it’s invisible! In the space of eight months, I went from a healthy, active, young woman who had never even set foot in a hospital, to a cancer patient who had been through five surgeries in attempts to rid her body of a now-invisible aggressive cancer. I can scarcely believe it.

Wow, you look so well!

One of the most difficult aspects of my diagnosis has been looking well. Melanoma doesn’t respond well to chemotherapy, and it is not an option for me. When I first ‘came out’ about my cancer, I was asked a lot of questions about chemotherapy. When would I have it? When would I lose my hair? How could I have a serious illness, but look so healthy? And (the worst): did I actually have a serious illness? Despite all my rounds of surgery, and the trauma that comes with any cancer diagnosis, I began to feel as if my specific ‘flavour’ of cancer was being downplayed. If I mentioned melanoma, I felt as if I had to explain that I had always looked after my skin, and actually my diagnosis was not down to any irresponsible behaviour. As an aside: just wear your sunscreen! And no, I have no idea if that mole on your arm is dodgy…

Cancer messes with your head

Although I know deep down that my diagnosis is serious, it took me a long time to stop feeling like a cancer fraud. Not only do I look healthier than ‘the average cancer patient’ (fun fact: there’s no such thing!), but I can’t relate to many support group discussions about chemotherapy and radiotherapy side effects as I had never had that experience. Even if my cancer progresses, chemotherapy will be a last resort.

Through Shine, I’ve been able to meet others who have ‘just had surgery’ and can relate to some of the feelings I’ve described. It’s unlikely that I’ll ever meet someone who has the same diagnosis as me (if you have mucosal melanoma, please make yourself known!), but it is wonderful to be part of a community that acknowledges all the effects that a cancer diagnosis can have. I don’t have to explain or justify myself anymore!

I’ve only lived with cancer for a few months, yet the experience has already taught me a lot about myself. It matters less and less what other people think or believe about my illness. Instead, I focus on how I feel, and my own perceptions of my strengths and limitations. I’m finally giving myself the space to listen to my own needs – and that could be anything from needing to burn off some energy at the gym, to requiring a lazy day of nothing on the sofa.

It is so important to listen to yourself.

Great Escape: reunited!

2018 Escapee Caroline shares her experience of our Great Escape Reunion, a one-off event celebrating five years of weekend retreats for young people with cancer.


I was lucky enough to be able to attend the 2018 Shine Great Escape (read my fellow Escapee Rosie’s blog about it here), and I was invited to the Great Escape Reunion almost as soon as I had accepted my place on the Escape itself!

It turns out that 2018 was a year worthy of celebration: the Great Escape that I attended was the fifth weekend away for young adults with cancer that Ceinwen Giles and Emma Willis had organised since Shine began. In March, Shine organised a reunion event in London, inviting all of those who had attended a Great Escape to come along and celebrate the anniversary with them.

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Some of the 2018 Great Escape attendees reunited!

The afternoon began with tea, cake, and conversation, which gave us time to chat with our fellow Escapees and meet those who had attended in previous years. While it was a great opportunity for many to catch up, for the 2018 attendees it was also a chance to get to know each other better. Although we all feel a strong bond with our ‘tribe’ as a result of the Escape, there are still so many things that we want to learn!

Once we’d warmed up and helped ourselves to a piece of flapjack or four, the Reunion continued in true Escape style – with Sharpies, crafts, and collages. Although some Escapees remain defiantly unartistic, everyone took part in creating collages to show how the experience had affected their lives. It was amazing to see how much one weekend away could change our perceptions about cancer and our attitudes towards living with the disease.

After the activities came a potted history of the Shine and the Escape from Ceinwen and Emma, including stories about how they’d manage to convince friends and friends of friends to sign up to voluntarily spend a weekend at a hotel in Bournemouth with a group of young people with cancer – hardly the most glamorous of mini-break ideas! We are all overwhelming grateful that they pulled it off, as the next portion of the afternoon showed. Representatives from each Great Escape gave short presentations about their experiences and gave us an insight into what everyone had been doing since their Escape. This part of the afternoon was emotional for many reasons. It was fantastic to see photos of weddings, exciting trips abroad, and new babies, which gave us optimism for our futures beyond cancer. However, the moving tributes to those who have sadly passed away since attending their Escape reminded us all about what it is that brings us together. After the presentations, we raised a glass not only to Ceinwen, Emma, and the volunteers, but also to the wonderful Escapees who are no longer with us.

And as for the 2018 Escapees? Although we weren’t convinced that we would have much to report after only a few weeks apart, we had managed to achieve a surprising amount: a few new jobs, several dates, a couple of people returning to work, and some meet-ups already in the calendar for later in the year. And then, of course, the few thousand (!) WhatsApp messages we had exchanged with each other since leaving Bournemouth. It seems that a Shine Great Escape isn’t a Shine Great Escape without a very active WhatsApp or Facebook group!

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Fond memories of the Escape…

The reunion came to a close with a group discussion about the future of Shine, and how we could ensure that more young people are able to benefit from everything the charity has to offer, then a delicious buffet.

 

I’ll leave you with a few comments about the day from my fellow 2018 Escapees. Thank you again for everything Shine, and all the volunteers who have contributed to the Great Escape!

‘It was great to chat to previous attendees and see that they are still benefiting from the Escape and have gone on to make good progress. Also, it was nice to see that they are still good friends with each other years later. The Escape has a long-lasting impact and doesn’t just fizzle out after leaving the bubble of The Grove.’

‘I get really tearful thinking about our Escape and the Reunion. I feel like I belong with you guys, where I don’t belong anywhere else.’

‘[Our group photo from the Reunion is] my work screensaver!! I look really happy, which makes me smile, and when I have a tough day it reminds me that we’re in this together.’

What is a ‘Great Escape’? To learn more about the Shine Great Escape and how you could apply to take part, check out our website here

Introducing Kate!

Five years ago, Shine didn’t have any staff. In fact, we were really just getting the ball rolling on this young adult cancer charity whole thing. Looking back at where we started makes it even more exciting that we’ve just welcomed our FOURTH employee!

Read below to find out more about Kate – she’ll be supporting our 14 Shine Networks across the country. We’re still a tiny charity (with big ambitions) but we’ve grown a lot in the last few years and we couldn’t be happier to have someone new on our team!


Hello, I’m Kate!

Trying to put almost 40 years of life into a few hundred words isn’t easy AND I am not one for talking about myself, but I wanted to introduce myself and give you a bit of insight into why I do what I do.

Born in Northumberland (very proud of this!), we moved south to Bedfordshire when I was nine so my accent didn’t have a chance! Aged ten, I was diagnosed with Type 1 Diabetes which had a huge impact on my education as I missed so much school. There was an underlying cause of the diabetes which wasn’t discovered until I was 16, so it was IMPOSSIBLE to manage!KJ PP

As a young teen, I wanted to go into medicine, but all the health stuff got in the way and I wasn’t able to finish my A-levels or go to university. Then, when I lost most of my sight in my early 20s because of diabetes, I really felt that the odds were stacked against me. Fortunately, with little sight I was still able to do some studying with the Open University, which was brilliant. After hundreds of bouts of laser treatment and a month in Addenbrooke’s Hospital, Cambridge, I thankfully regained a lot of my vision and this remains fairly stable to-date.

Handling all this stuff at such a young age had a massive impact on my mental health and I really struggled with anxiety and depression, but it made me particularly interested in the impact that physical health challenges can have on our mental health. As I found it difficult to get into work, I started volunteering for a tiny mental health charity based in Luton, and before I knew it I was working with them full-time and loving it. I worked with people who had various mental health challenges, helping them to write and perform small drama pieces for health care professionals and the public to help them understand what life is like with a mental health condition. Although I was most definitely not into the drama side of things, I found it incredibly rewarding to be able to bring both sides of the coin together and to challenge perceptions, leading to changes in clinical practice. Nowadays, this would be called something fancy like ‘co-production’ – but nearly 20 years ago I don’t think that term existed!

KJ Beach 1Fast forward to today, and I have had the privilege of working for several charities including Mind, Crohn’s and Colitis UK, and most recently Cancer Research UK. My focus was volunteer management until 2015, when I took on a patient engagement role which brought patients and clinicians together at local and national levels to improve services. Over the past few months, as well as working in patient engagement, I have started to talk about my own experiences as a patient. This has been so rewarding. I have been able to get involved in an NHS Improvement initiative for patient leaders and I have also done some work with finance and insurance company American International Group (AIG), helping their managers to become more inclusive.

I am so happy to be part of Shine Cancer Support, and I feel that all the professional and personal experience that I have had fits perfectly with the role of supporting and developing Shine’s local networks. What excites me the most is working with all of you to help Shine grow and reach more people while keeping true to the Shiny vibe! What you say, what you need, and how you feel about things really matter, and together we are such a force for good. I am really looking forward to getting to know all of the network leaders, and understanding how we can work better together across Shine’s community. Without all of the amazing network leaders, Shine would simply be four people desperate to make a difference to the lives of young adults who have had a cancer diagnosis.

I get what it is like to be ill when you are just getting to grips with yourself and life: to have that rug pulled out from under you, and to have so many hopes and dreams shattered. That said, I wouldn’t change my past as it has brought me here. 2018 is a big year for me as I turn 40 in November and I am already planning the celebrations! I never expected to reach my fortieth birthday, so it really will be a big party (parties…?) and I will be more than happy to accept cake when I am out and about.

See you soon!