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. 

Moving on – with the help of broken crockery

Here at Shine HQ, we frequently see questions about “returning to normal” in our online groups. Young cancer patients rightly want to know when they’ll be able to get back to there they were before but, in most cases, there isn’t an easy answer. For many people we work with, we know that life doesn’t ever really go back to normal. That’s not to say that it can’t be good (or even better) than before – it’s just that something as big as a cancer diagnosis can leave you feeling changed. In our latest blog, Karen shares her thoughts on “moving on” – and explains how it relates to the Japanese art of Kintsugi!


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Blog author, Karen Myers

The end of active cancer treatment is a weird time. It’s all you’ve wanted since diagnosis – an end to hospital appointments, tests, treatments, side effects, surgery, pain, discomfort, feeling a little bit shit. And then, if you’re lucky, it is over. You’re told that your treatment has done it’s job, got rid of the invaders, killed those nasty cancery cells so you’re NED (No Evidence of Disease) or in remission. You’re good to go. Back to normality.

Except there’s not really a ‘normal’ after cancer. At least not the same normal as there was before. It’s a readjustment. Your energy levels, your self-confidence, your relationships, your work and social life, your body and your body image have all been knocked. With the safety net of treatment removed, you are confronted with the things cancer has left you with or taken from you. After my breast cancer surgery, which removed my entire right breast and used skin and tissue from my stomach to rebuild a new ‘foob’ (fake boob), something I’ve definitely been left with is scarring. Physical and emotional.

My physical scars are going to remind me every day, for the rest of my life, what cancer has done to my body. They’re pink and vivid, only three months after my surgery, and although I know they will fade in time, I also know they are a permanent marker of the path cancer traced across my skin and my life.

But scars don’t have to be thought of as ugly reminders of something terrible, of the price your body has paid for fighting cancer. In an attempt to see my own scars in a different light, I’ve become a bit obsessed with broken crockery and the Japanese art of ‘kintsugi’.

Kintsugi, translated as ‘golden joinery’, is focused on repairing broken items of pottery with a lacquer mixed with gold powder. By using the golden glue, those joins where the broken pieces have been put back together aren’t hidden or disguised but embraced and celebrated. Kintsugi says that the breaks, and the subsequent repair, should not be ignored, but valued as an indicator of the hard history of that item. By adding gold, that history, the cracks, the breaks and the struggle to bring about repair, make the broken item of crockery even more beautiful than before. Kintsugi recognizes the fragility of the broken piece, but also testifies to its strength by making the new bonds glow and shine, to celebrate that which is holding them together.Kintsugi

To me, this is one of the most beautiful concepts that cancer survivors can apply to themselves. Now, I’m not suggesting that everyone tattoo their surgical scars gold (although it is somewhat tempting). Instead, I’m trying to embrace the philosophy behind kintsugi as a way to accept my scars, both those visible on my skin and those hidden in my heart and mind, as evidence of both my fragility and my strength. Bodies do break and break down. The human form is fragile, even when we’re young. There’s no shame in being ill, so why should we be ashamed of the scars that mark us out as having endured? Alongside the suffering these scars, these breaks in the pottery, also show endurance, strength, resilience, determination, sheer bloody-mindedness, and, we hope, recovery. No-one asked for them but, just like a piece of kintsugi-rescued crockery, our scars are part of our cancer, and life history.

Of course, when active cancer treatment has finished, anxieties about the future still abound – we worry about the risk of recurrence, of developing secondary cancers, the impact of depleted energy resources, the possibility of resuming work and the damage done to our mental wellbeing. It’s too simplistic and insulting to assume that because we have finished treatment we can simply ‘move on’ or ‘return to normal’. But for those of us lucky enough to be officially cancer-free, the kintsugi philosophy asks us to see those emotional scars and continuing anxieties as markers of our resilience. We might not feel resilient or brave – I hated anyone telling me I was brave during treatment. I wasn’t brave. I cried and raged a lot. I got on with it because I didn’t have any choice – but the golden lacquer shows that what broke us initially was overcome. We face continuing physical and psychological challenges, but with a history of obstacles overthrown marked into our skin and our psyche. It is glued into our repaired bodies and recovering minds.

I’ve never been much of one for tattoos. But since losing my breast to cancer, I’ve been fascinated by the stunning skin-inked artwork that some women have chosen to cover their mastectomy and/or reconstruction scars. Rather than opt for nipple reconstruction or 3D nipple tattoos, these women have put their own bold, beautiful stamp on their bodies. To honour what has been lost and to shout to the world that there is beauty even in scarred and damaged tissue. For me, it seems strange that the scars I see every day will eventually be forgotten by most of the people I know, even close friends and family, because they are hidden. So I see that tattooed artwork as a contemporary body-art form of kintsugi, and it may be that is the way I reclaim my own body, my own sense of self and remind the world that I have been broken but repaired.

Moving on is always going to be hard when you bear scars. But maybe with a glint of gold in your post-cancer wounds, be it real tattoo ink or metaphorical mind-glue, you can start the process of healing and re-forming into a new, fragile but resilient, kintsugi-d you.

Karen Myers is a blogger, baker, knitter, traveller, theatre-goer and escape room addict. She was diagnosed with invasive breast cancer in July 2018 and has blogged about her experience at atozeeofbc.com.

Living with incurable cancer: talking to my children

In this guest blog post, Shine community member Beth writes about her story of living with incurable bowel cancer, and shares her experiences of talking about her illness with her young children.


 

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Meet Beth

My name is Beth, and I was diagnosed with bowel cancer in 2016 at the age of 37. I was working as a Paralegal, and about to start the final year of my law degree. This diagnosis could not have come at a worse time, just when I was finally pursuing the career of my dreams and becoming a solicitor. However, it was not my career that came to mind, but my family: my husband and my babies.

In 2017 things went from bad to worse. I was told that the cancer had spread to my lungs and was now incurable. I was given six months to three years to live. My son Joseph was nine at the time, and my daughter Abigail was just seven. How was I going to tell them? What was I going to tell them? How much should I tell them? How much would they understand? How could I make sure I was always a part of their lives? What could I put in place for them emotionally for when I was gone?

I had a lot of questions – mostly about my kids, not medical questions for the doctors. Who to ask? I found charity leaflets about talking to children about cancer, but they were very generic; I felt that there was a lack of support for parents and children in this situation. I wanted to speak to child psychologists, parents who had been through this, adults who had lost a parent as a child – anyone who could give me insight into the best things to do for my children. in the end I found help, ideas and support from my followers on my Facebook page. I asked if anyone had lost a parent at a young age and if so, what had helped them. Then the ideas came flooding in.

When I was first told I had cancer, we told the kids that I had some bad cells and the doctors were going to take them out, meaning that I would be in hospital for a bit. After my initial operation, we explained that I would need to have some medicine to kill off any tiny bad cells that the doctors could not see and help prevent any more bad cells growing. We explained that the medicine might make me feel ill. The progression of my cancer meant that I needed to break the news that the bad cells were back, the doctors could not cure me and – the bit I still needed to get my head around – I was going to die (but we had no idea when).

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Beth and her family

I talked to Richard, my husband. We planned to sit the children down and talk as a family, but not about time frames. Unfortunately, we never did get to sit down and do this. Life has a funny way of taking these things out of your hands.

I did tell Joseph and Abigail, but it was one afternoon when I was snuggled up on the sofa watching TV with them. An advert about cancer came on and Joseph turned to me and said ‘you had cancer didn’t you, Mummy? But you don’t have it anymore.’ My heart sank. We had never used the ‘cancer’ word, but he knew. Yet that was not what got me. Yes, I was going to have to shatter their world, and it would have to be now because I could not lie to them. The conversation went something like this:

 

Me: Well, you know that medicine to try and stop it coming back?

J&A in unison: Yes, Mummy.

Me: It looks like the medicine didn’t work as well as we thought, and I do still have cancer.

A: But Mummy, cancer can kill people.

J: But the doctors will make Mummy better, Abi.

Me: Unfortunately, the doctors can’t cure me, but they are going to do whatever they can to keep me here with you for as long as possible.

A: Are you going to die, Mummy?

Me: We all die one day, but I will probably die sooner than we would like. You know that if there is anything you want to ask me, you can. We can talk about anything.

There were lots of tears and cuddles, but oddly no questions – well, not then. A few weeks later my daughter, who is very matter-of-fact, asked ‘Mummy, will you last until Christmas?’. I am still not sure if she was more concerned about her presents – the man in a red suit does not get all the credit in our house…!

Both children made us promise that we would tell them whenever we got any new information. Joseph wanted to know about scan results and treatments. They seemed reassured by being included in what was going on. Just over a year on, we still have no idea how long I have left, but we take each day as it comes, and do everything we can to make as many memories together as possible.

We talked about making memory boxes, something they would have to keep their memories of me and our lives together as fresh as possible. The children put things into their boxes that remind them of something we have done together. It could be a photo of us together, anything that means something to them. I hope these boxes will help them to connect to me through physical things they can hold, touch, see, and smell.

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Dreaming about holidays

I am also doing things that the children do not know about: for example, I have written their birthday cards all the way up to the age of 21. This was tough and I cried a lot, but it was important to me. I set up an email address for each of them and I send them emails. I include a summary of something we have done together, what I enjoyed most, and a picture or two. I bought some books that ask questions about my life, and about their lives. I am in the process of completing these books and trying to answer all the questions.

I plan on recording videos and writing letters for special occasions. My husband can give them if he feels appropriate. The most important thing, though, is to be there for them right now and make the most of the time we do have together.

I am currently on a holiday booking spree…

 

You can learn more about Beth and get in touch with her via her blog, Facebook page, or Instagram/Twitter: @bowelwarrior. 

If you would like more support about talking to children about cancer, you can…

 

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.

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!

How I told my five-year old I had cancer…

In this post, Shine member Steph tells us how she talked to her son about her diagnosis. What are your experiences of talking to young children about cancer? Please share this post and add a comment if you like.


When I was diagnosed with cancer in July 2016, my first thoughts were ‘I just need to get through this for him’ – ‘him’ being my nearly five-year old, Theo. We’d arranged a fantastic party for his fifth birthday and all I was concerned about was being there for it.

As it happened, the first part of my treatment was booked in for a week after the party. This was such a relief. The sun shined brightly that day and it couldn’t have gone better.

I knew, though, that I had to tell him about my cancer because there were going to be things he’d see, and things that would come as a surprise to him. Perhaps everything he was used to might change. Who knew at this point?

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Steph and Theo

I read a book that was written to help you tell your children about a cancer diagnosis, and I was genuinely saddened by it. It talked about the family getting angry and the diagnosis not being the child’s fault, and about parents getting cross but telling the child not to blame themselves. Then there was a picture of utter chaos: dad was in the kitchen in his pyjamas, there was a knife in the fish tank, the dog was eating the kids’ cereal and the kitchen floor was flooded. It was absolute carnage – it simply looked to me like daddy wouldn’t be able to cope. This was not at all what I wanted Theo to see or understand. The book and the tale it told just really didn’t work for me.

A different approach

I wanted something that said, ‘no matter what happens, Mummy is doing her absolute best for you, and doing everything in her power to be OK’. So I decided to write a poem. I needed it to be personal to Theo to help him understand that the future might look different for a while, and that Mummy wasn’t going to be well.

Dear Theo,

Mummy has written this for you, it’s a rhyme, 

And wants to read it to you from time to time.

For now, mummy does feel a little sick,

But a cuddle from you would do the trick.

Sometimes mummy will stay in hospital for the night,

The nurses will take good care of her, she’ll be alright.

You know you take medicine from a spoon,

Mummy has medicine too which’ll make her better soon.

The doctors are doing all they can to make her well,

Why not even wish her a get well soon spell?

Mummy is trying her absolute best,

But sometimes she needs a little rest.

You are all she thinks about day and night,

And dreams about you and her flying your kite.

As always be the loving person you’ve always been,

You’re the bravest boy mummy has ever seen.

Theo’s reaction

The first time I read it to Theo, he smiled and said ‘wow, it rhymes!’. I knew, though, that he’d heard the underlying messages. I was lucky too that when Theo was with his dad, he’d read it to him as well. Theo heard the poem over and over again, and even asked for it sometimes. I think it prepared him for the next few months and taught him that there was likely to be a fair amount of change coming.

As changes were on the horizon, I told him when they were going to happen: a stay in hospital, surgery (and therefore he’d have to be extra careful and not jump on me) and losing my hair. Theo never really asked any questions and dealt with it all very matter-of-factly – a little like me, I think.

Theo really didn’t like my wig though and wanted me to just ‘be me’ and not hide behind it. My hair is growing back now, and the other day he asked if I could shave it again as that’s what he preferred! It struck me that no matter what, children love you unconditionally – and even if I’m feeling different or unusual, to him I’m normal and I’m his mummy.

I also visited Theo’s school as I didn’t know how he would be affected by my illness and if it might come out in class. The school were fantastic: they set up an Emotional Learning Support Assistant for Theo, with whom he had a chat with once a week. It seemed that no matter what was happening, I was still his mummy, and he simply told them what was going on at that point in time. It gave me a great peace of mind to know that the staff were looking out for him when I wasn’t able to do so.

Looking back

I find my poem hard to read now as it brings back so many difficult memories. At the time, my priority was to make sure that Theo would be okay, and that I got through everything as easily as I could for him.

I’m so glad that I didn’t go in all guns blazing with that book, and that I took some time to think about what was right for us.

If you like the poem or think it would work for you, too, then feel free to read it to your children.

If you’re affected by any of the issues that Steph has discussed, you can join our private Facebook group and find peer support.

If you’re free on 19th May, join us at Shine Connect 2018, our annual conference. We’re having a session specifically for parents going through cancer who want to support their children. More information at shineconnect.co.uk.

You can also look at the list of useful organisations on our website