Shine Connect 2019: a participant’s experience

In this post, Shine’s blog editor Caroline writes about her first time at Shine Connect, our annual conference for people in their 20s, 30s, and 40s living with and beyond cancer.


I discovered Shine Cancer Support when I was first diagnosed with cancer in early 2017. I felt completely lost and as I clawed around in the dark, trying to make sense of the incomprehensible, I found the Oxford Shine network. I started going to local meet-ups, and then I was lucky enough to get a place on Shine’s Bournemouth Great Escape. I’ve been to Shine Camp, I’ve completed a fundraising 50km hike, and I also volunteer as Shine’s blog manager. If I could bear to look when the cannula goes in, I might even be able to confirm that I bleed orange too – who knows?

I’d never made it to Shine Connect though. I have anxiety that sometimes makes it harder to spend time with large groups of people and besides, who wants to give up an entire spring Saturday to talk about cancer? As it turns out, approximately 150 other young people with cancer! As May rolled around, I decided that this year I was going to give Shine Connect a try.

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Neil, one of Shine’s employees, greets some conference participants!

I’d signed up to attend the pre-conference breakfast, so I had an early start to get into central London from my home in Oxford. I arrived at The King’s Fund to coffee, delicious pastries and a big Shiny welcome! Each attendee (including me) had been matched with a Shine volunteer, which meant that I immediately found myself chatting with a small group of people, including one who had travelled all the way from Scotland just to attend Connect!

The conference began with a short welcome from Shine founders and co-directors Ceinwen Giles and Emma Willis, during which they introduced the charity and re-launched Shine’s small c project.

Second on the main stage was a panel discussion with Shine members Charlotte, Precious, Dan, and Chris who chatted about their own experiences with cancer and, in Chris’s case, what it’s like to watch a loved one go through treatment. I find it really useful to hear other young people’s stories. Regardless of the type of cancer, there are plenty of commonalities. The panel discussion picked up on a lot of themes that were then explored in talks and workshops throughout the day.

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Panel discussion on living with cancer at a young age.

There were lots of workshops to choose from but I’m really interested in improving my fitness to make sure I can live longer with my lung metastases, so I joined the session ‘Getting active after a cancer diagnosis’, led by Gemma Hillier-Moses from Move Against Cancer. Once Gemma had us all warmed up with a group attempt at the Cha-Cha Slide (so happy that there are no photos of me!), she talked about Move Against Cancer’s online programme for under 30s, as well as their popular 5k Your Way initiative. As someone who repeatedly sets herself challenging fitness goals but then gives up when she fails to achieve them, my biggest takeaway from the session was that movement doesn’t have to be structured. Going out just to run, rather than run 5km or run for 30 minutes, can relieve some of that ‘pressure to perform’ that we often experience. A brilliant tip!

Lunch provided the opportunity to share stories from the morning sessions, make the most of the delicious hot buffet (I’m still dreaming about the chocolate bread and butter pudding!), and meet the exhibitors in the marketplace. I snuggled the therapy dogs, picked up some lovely free moisturiser from Jennifer Young, and chatted to researchers about the specific needs of young adults with cancer. I also managed to catch up with some friends from the January 2018 Great Escape, which was great.

In the afternoon I opted for the ‘Managing Relationships’ workshop, led by Emma and Rosie from Shine. We talked about how the relationships with our family, friends, and colleagues have been affected by cancer, and the session felt quite emotional. Although I’ve taken part in similar discussions before, I still left the workshop with some fresh perspectives and new ideas.

After a quick cup of coffee (and scones and brownies!), all the conference delegates gathered for the keynote presentation: neuropsychologist Dr Stuart Anderson talking about the dreaded ‘chemo brain’! Dr Anderson put our cognitive skills to the test with a couple of simple but challenging exercises, then explained some of the scientific literature on the topic. I’ve never had chemotherapy but I’m sure that cancer has affected my brain cells – so it was good to hear that ‘chemo brain’ is also known as cancer-related cognitive impairment, and neurotoxicity from chemotherapy is only one of the many suggested causes. I can blame my poor memory and attention span on cancer after all! Thankfully, Dr Anderson closed his presentation with lots of helpful brain training app recommendations – so hopefully I’ll be able to concentrate again soon.

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Keynote speaker, Dr. Stuart Anderson talks about “chemo brain”.

Emma and Ceinwen closed the conference by thanking the event organisers TTA, the speakers, and all the excellent marketplace exhibitors. After a final group photo, it was time to open the bar! I had a fantastic time at Shine Connect and the day flew by. I’ll be back next year – and I hope to see you there?

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.

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 Camp 2016 – One camper’s story!

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Shine Camp is held every year in the beautiful village of Corfe Castle in Dorset. From the 5th-8th August this year, around 100 people camped out in a private field surrounded by the picturesque views typical of the area. We asked Clare to tell us about her first Shine Camp experience…

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It was with the measured optimism of the British that I packed according to the weather reports. We were promised sun and, as such, I packed wellies, sourced some waterproofs, and found the numbers of some local B&Bs in case of extreme storms. The weekend of Shine Camp 2016 had finally arrived and after many hours of trying to edit my ‘I definitely need this for camp’ list the car was full and we were ready to go west. Like the Pet Shop Boys, but less stylish.

I’d heard tales of Camps past; rumours of a mystical campfire, promises of beach walks and barbecues. I’m not above admitting that I was a little bit very excited. The traffic gods were not in everyone’s favour and as we arrived in the middle of a very sunny Friday afternoon we were fed tales of people still stuck on the road. Seven hour drives from London, an unintentional diversion onto a ferry, three long days stuck in a roadside burger bar (some of those are true). The frustrations of the road were quickly forgotten however when the Friday night ‘bring your own buffet’ was revealed; with everyone bringing along a dish we had communally created the biggest table of food in the world. A brilliantly devised and delivered Pub Quiz in the marquee followed the food. I’m not going to pretend that it was friendly competition. With the prize being free places at Shine Camp 2017 it was a hard-fought contest. I believe we came second, amongst rumours of match-fixing and bribes. We’re not bitter.2

There was predictably a frenzy of tent-pitching, some more efficient than others. In our small corner of the field we created what we liked to call a tent village, a place that fostered an immediate community spirit and kicked off the three-day game of musical camping chairs, which was to become a defining feature of the weekend. The evening was rounded off with a campfire and stargazing. For those city-dwellers of us, the display of shooting stars that had been arranged in our honour was much appreciated. It was sat round the fire that it first dawned on me what an incredible event this was; I was surrounded by people who would not bat an eyelid at a cancer reference, in fact it was welcomed. Everyone who attended had an experience to share; be it as a patient, a family member or a friend. There was no pressure to talk about your story but the option was there and that, in itself, was enormously comforting. I’ve been to many Shine meet ups in London and attended the Escape earlier this year and I was reminded of the power of sharing a common experience, and of the compassion that is seemingly endless within this wonderful Shiny community.

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Saturday morning bought bacon and egg sarnies, comparisons of last nights sleep, and certainly my resolution to buy a new airbed that didn’t deflate overnight. The weather was gloriously sunny (I think entirely down to my extreme wet weather preparations) and groups ventured out to enjoy the Dorset surroundings. A waterpark trip had been organised in advance so a large contingency of brave, wet-suited individuals set off to take on the inflatable obstacle course set on a local lake. For those of us who prefer a more sedate pace of life there was the chance to visit the beautiful beaches at Studland or to grab fish and chips by the sea in Swanage. For the Pokemon obsessed in the group apparently there was a gymnasium in Corfe Castle just down the road. This is apparently a big deal.

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Later that afternoon Oliver Spencer, our lovely Shine patron, hand-delivered enough BBQ food to feed a small army. Which was then valiantly cooked by various people in relay. It was only then that Emma revealed the big surprise, an ice cream van from one of the sponsors of the event, Insurance With. As the realisation dawned on everyone that this did indeed mean free ice cream the gloves came off…and we queued politely like only the British do. As the sun went down on another wonderful day at camp, the Shine Shot Bar opened up. Cue several people with limited recall of the rest of the evening.

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Saturday night bought the first reminder that we were actually camping in the UK. The wind was determined to make our tents into wind tunnels and the rain followed, fortunately only after everyone was safely ensconced in their sleeping bags. I personally used the opportunity to steal the duvet, blankets and most of the pillows to ensure that I slept well. I think we established that I am nothing if not a selfish camper.

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Ceinwen’s Canadian pancakes (apparently different from their American counterparts in that they are ‘just better’) were a great incentive to stagger down the field to the marquee on Sunday morning. The Shine camp facilities, which had worked flawlessly all weekend, meant that cups of tea and coffee were free-flowing and those of us who had had images of camping stoves at dawn were pleasantly surprised. I then fell into my typical Sunday routine of eating and resting; it’s just how I roll (quite literally after a pub lunch, Cream Tea back at camp, and another BBQ in the evening). It was lovely to spend some downtime with old and new friends, to get to know partners and children, friends and family. The program of events culminated with Shine Camp’s Got Talent in the evening. I was privileged enough to judge the competition which included performances from our younger campers. We were dazzled by dance moves, super-impressed by singing and blown away by a bike display. My fellow judges and I worked hard to keep it professional but tiny girls dancing in tutus were pretty much the end of us all.

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By the third campfire that evening the crowd had thinned out a bit, with many people heading home for work on Monday (ah, the life of a part-timer!), but a solid contingency manned that fire knowing it was our last of camp that year. We had a revealing game of ‘tell me a secret’ and caught the last shooting stars of the weekend.

Monday morning arrived and I began to regret my ‘bring everything you might need in the event of a nuclear disaster’ approach to packing. We dismantled tents, deflated mattresses, retrieved kites from cow fields, and packed away the illuminated rabbit night-lights. We then had a discussion about why I needed four illuminated rabbit night-lights, but that’s for another time. We made our final trips to the portaloo and bid farewell to the donkeys that had become firm friends in spite of their nocturnal singing sessions. We said our goodbyes to the remaining campers, exchanged hugs and phone numbers and as we drove off made promises to meet in that very field next year to do it all again.

It cannot be underestimated how much work goes into organising such a fantastic event. A whole team of people work extremely hard to make sure the weekend is as amazing as it is. I know everyone I spoke to is enormously grateful for all that hard work both in the run up to and during the campout. Particularly a big shout-out to Emma Willis, the one woman camping machine, we salute you.

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Life, but not as you knew it: Pregnancy, cancer and lights in the dark

There is never, ever a good time to get cancer, but having to face your own mortality while waiting to give birth to a new life is especially hard.  At Shine, we know a number of families who have had to cope with cancer while pregnant or shortly after birth. In our newest blog Hayley shares her story  of coping with bowel cancer while waiting to have her son.  It’s not something you read about very often (and quite frankly cancer and pregnancy seems like something that just shouldn’t be allowed!).  Take a read and let us know what you think.


Hayley pregnant

A heavily pregnant Hayley

My car keys made a nice, dramatic sort of jangle as they crashed to the floor. My purse too, made a satisfying crunch before skidding and coming to rest against the wall.

I must have made a dramatic scene: a large pregnant woman hitting the decks like that. Voices gathered in the darkness. Can we get her into a chair? Who is she? Can you hear me?

I heard myself protesting at being given a shot of morphine “I’m pregnant! I don’t want it”. The A&E staff were harried and unsympathetic; they hovered over me attaching lines, fussing and talking. A young doctor eventually presented me with a medical book to ‘prove’ pregnant women could have morphine if needs must. I didn’t try to read it.

The pain became more bearable and the scene came into focus. The A&E consultant came to talk to me. I told him I’d had bowel problems for years on and off….they kept telling me it’s irritable bowel syndrome (it’s not, and I still think today it is Crohn’s but that’s another story). He went off to look at his computer. They took a polyp from my bowel two weeks before and I hadn’t had the results.

I watched the doctor frowning at the computer, leaning in towards it as if getting closer would make what he was reading make more sense. He sighed, and came back to me and held my hand. And he told me: it was bowel cancer. Suddenly everyone who was looking after me changed. They all looked a bit sorry for me. They talked softly. They held my hand. ‘I’m going to die’ I thought and began to cry for my children and for my unborn child. How the hell could I be 32, pregnant and have bowel cancer? The world cracked and fell to pieces far too sharp to walk upon.

I was transferred to a ward where I talked to my surgeon to be. The colorectal nurse told me to go away and enjoy the rest of my pregnancy (because once I’d been induced early and had my baby, I was going to have a colonoscopy, be scanned, have a foot of my bowel removed and thus also be removed from my baby. And they wouldn’t be sure of the extent of the cancer until after the operation). So nothing to worry about then!

The rest of my pregnancy passed in a blur of worry, pain, Co-codamol and panic attacks.

One grey, rainy Sunday I became breathless. The out-of-hours doctor sent me to the hospital to be assessed and handed me a sealed envelope to take with me. It soon became a ripped open envelope: mmmm now lets see….differential diagnoses… Pregnancy normal symptom? Anxiety? Lung mets? LUNG METS…he wrote that?

All the way to the hospital I cried. I was certain it was lung mets and there was no hope.

But it wasn’t. I had to go through an x-ray (pregnant women can’t have x-rays) and a lung perfusion scan to make sure. I remember crying and one of the nurses talking to me about her mum who had died of breast cancer but had had nine years of fight before she succumbed. She had tears in her eyes as she told me the story. She gave me a bit of hope. She was pregnant too. I often wonder about her and am grateful for the way she treated me. They aren’t all like that.

One of the hardest things to take being a pregnant woman with cancer, was having to attend a million baby scans so they could keep an eye on the baby’s growth. Every time I had to sit in that waiting room full of happy expectant couples, texting their families on their phones ‘It’s a girl’ or whatever was torture. I sat there alone and scowled at the world. They had no idea what I was going through and I wanted to shout “I have cancer!” at the top of my voice and shock them all. I wanted to share my pain. You get some dark thoughts when you are in dark places.

The wait for the date for the induction of my labour was one of the hardest I have ever had to endure. The not knowing the extent of my disease, the worry about the operation, the impending separation from my baby tortured me day and night. There was no real life, only endurance. Every minute ached, every day hurt, every week burned.

Then we did it. We went through horrendous unnatural labour to meet my third child. We called him Monty. He is beautiful and is the light of my days. In those early days and nights at home I would cradle him and cry silently at the thought of being apart when I went into hospital for the operation. He was five weeks old when the date arrived. Another heartbreak. A deep, instinctual pain of separation: mother from newborn. It hurt so much I cannot describe it. My poor husband.

But time passes, doesn’t it. We endure pain, physical and mental. We wake up, we sleep, we cry and we smile. The next day always comes. I came home from the operation after five days in hospital. I ached all over, my bowels were not working in any shape or form, but I was going home. It was bliss.

They told me I was clear. I should have been relieved but somehow the reassurances were empty and hollow. I was numb. It meant everything but I felt nothing.

The story continues. More recent MRI scans I have found something on my liver – bile ducts that have closed off. The liver specialist thinks it might be PSC. It is not good news and there is no cure. PSC goes hand in hand with Crohn’s; tests for this are inconclusive and ongoing but I am pretty sure it’s there. More darkness.

The reason for my cancer was a genetic mutation, so I was always going to get bowel cancer at some point. Without regular screening and, at some point, having my whole colon removed, I will get it again. My children will have to be tested. It is possible they could share my mutation. Dark, dark, dark.

Hayley and Monty

Hayley and Monty

What I have gained out of all this is the knowledge that I can only do what I can do. I can only fight mentally. My body, the doctors, the scans will be what they are. The course of my diseases will be as they are, progress as they wish, all beyond my control. All I need worry about is my mind and how to keep it on the right path…acceptance, hope (but I’m a pessimist), openness, the making of new friends. Friends in the dark. Friends in my dark.

When it comes down to it, it is sort of alright to be in a dark place when other people are there lighting it a little with their stories, their struggles, and their smiles. I do not feel alone. And that is the biggest gift, to sit in the dark and be surrounded by shining lights.

 

Hayley is (nearly) 34 years old,a mum of three and a primary school teacher. She lives near Norwich in Norfolk where her 6 year old, 4 year old and 8 month old – together with a dog, cats, ducks and hens – keep her very busy!

Shine has a growing private online community that you can access via Facebook; many of our members have dealt with cancer in pregnancy or shortly after giving birth. If you’re looking for additional support with these issues, please also check out Mummy’s Star, a charity that provides information and financial support to families facing cancer in pregnancy and the first year after birth.