Meet Neil: Shine’s newest employee!

We’re growing again! Meet Neil, our new Shine Network Support Officer. In this post, Neil shares his experience of having a malignant brain tumour and talks about how his life post-diagnosis led him to working for Shine. 


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Good times!

Hi everyone! My name’s Neil and I’m Shine’s new Network Support Officer. I am originally from Scotland but these days I live in North London. Previously I worked for a mental health charity which focused on social inclusion and co-working with volunteers, and I have been a member of Shine for a few years now. It brings me so much joy that I am now able to join Shine in supporting young adults after a cancer diagnosis.

I first discovered Shine while I was awaiting an oncology appointment at the Royal Marsden Hospital. In November 2016, when I was just 26 years old, I was diagnosed with a medulloblastoma, which is a cancerous brain tumour. I was working as a bar manager but was told by doctors that due to my dizziness, partial deafness and fatigue, I wouldn’t be able to do this anymore. It was a real shock to me that I wasn’t this invincible person that I’d always thought I was! I had surgery, followed by radiotherapy, and then a difficult recovery. During this time I suffered with some mental health issues. I moved back to Scotland after my diagnosis and my family and friends did such a wonderful job supporting me. While at home I attended counselling through Maggie’s which helped me to begin to understand all the trauma that had come from having cancer. When I moved back to London I started CBT therapy. This was awesome and I believe it really changed my life. I hadn’t realised that I had quite a negative voice inside my head, and being kind to myself continues to be such an integral part to my mental well-being.

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The scar from my operation for medulloblastoma

I was unemployed and having an awful time with my benefits, so I really wanted to get back to work as soon as I was ready. I went to my first Shine meet-up after days cooped up at home, and I thought they must have found me annoying as I had so much energy! To my delight I was completely wrong and I really enjoyed being around people who just ‘got it’. Some people in my life  didn’t care about me as much as I had thought they did, and I found myself in a really lonely place. The meet-ups helped with this, but since my treatment I had been quite shy about meeting new people and without working, I struggled to understand my place in society. I saw a post in Shine’s private Facebook group that invited men to apply for the Great Escape, a weekend in Bournemouth for 22 young adults affected by cancer. I applied and was accepted. It was life-changing for me (totally amazing!), and really made me want to focus on moving forward with my life. I met some lifelong friends and would highly recommend anyone who is interested to apply.

At my next Shine meet-up Clare, one of the London Network Leaders, recommended that I try some volunteering in my ongoing search for employment. I felt totally lost as I didn’t have a clue what I could do with no exam results (I was a naughty wee boy!), but I managed to start volunteering at a youth homeless shelter. I loved this. Many of the residents had mental health issues and I realised I had a keen interest in supporting this. I also recognised myself in some of them. After this I began volunteering for a charity that supports people with mental health issues. After two months I applied for a job at the charity and I was successful. I broke down in tears when they called me – and then I phoned my parents afterwards and sobbed away again! It felt like such a difficult road but I had got there, and my kind voice in my head gave me lots of compliments!

 

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My family have been very supportive of me

Since my treatment I had struggled with a loss of confidence, which was especially noticeable when dating! Complimenting someone when on a date was just beyond me, and I would get quite upset afterwards if I didn’t think that the date had gone well. Clare and Jess (another Shine London Network Leader) host a dating session at Shine Connect, which is Shine’s annual conference and the only one in the UK supporting young cancer patients in their 20s, 30s and 40s. I picked up some tips from them which really helped me to just treat each date as ‘practice’ and not get myself so hyped up beforehand. My best mate also kept on at me to ‘get the old Neil back!’. These days my confidence is much better.

After eight months in my charity role, I noticed that Shine was hiring for a Network Support Officer. I realised that the experience that I had in my current position, and the skills I’d picked up in previous management roles, made me a very suitable candidate – so I applied. Learning that my interview had been successful was another life-defining moment for me. And that really just brings us to now!

I am really passionate about helping people and I believe that that is my purpose on this world. If I could’ve spoken to myself during my bad times, I would’ve told myself to keep going. Don’t beat yourself up, and things will get better. Be patient and just take everything one day at a time. Make sure you are kind to yourself!

Thanks for taking the time to read this, and I hope to see you at an event soon!

Shine’s Northern Retreat

Hi everyone, I’m Rosie, and I’m the newest member of staff here at Shine HQ.  I was diagnosed with breast cancer in June 2016 and after following the usual treatment route of surgery, chemo and radiotherapy, I now have ongoing maintenance treatment every 3 weeks.  This is because the docs think that, at one point, the cancer spread to my spine, although currently I have no active disease.

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At work in the Shine office

A close friend of mine told me all about Shine at the very beginning of my treatment and as soon as I went to my first Shine event, I was hooked! I decided very early on that if the opportunity to work for them ever came up then I was definitely going to apply! I took on a volunteer role of jointly running the Dorset network and then, last June, I managed to make it back to the second year of my social work degree at Bournemouth University.  I was super lucky that I was able to choose my placement and so, of course, I chose Shine! However, around Christmas time that I re-evaluated the route that I was taking; trying to keep up with academic work around my treatment, while also coping with fatigue, was proving troublesome. The degree no longer felt so relevant now that I had new priorities: mainly staying alive, enjoying the time I have left (however long that might be!) and giving back to the community.  As a result, I made the hard decision to leave uni and instantly felt much better! Then in January of this year, (very serendipitously!) an opening at Shine appeared that was perfect for me: part-time hours and the opportunity to get involved with all the fab work that Shine does. I applied, and the rest, as they say, is history!

One of my first jobs was to help out Hannah (who runs Shine’s Manchester network), to staff Shine’s annual North Retreat in early March.  Shine’s retreats give attendees the opportunity to have a break from the stresses of living with cancer while also getting to know others in a similar situation.  

Ten of us settled into a spacious and comfy farmhouse that we had hired for a weekend, in a small village not far from York. Everyone was free to do as little or as much as they liked throughout the weekend. The only thing that we asked was for everyone to muck in a little bit (if they were able) with the cooking and tidying up.  If our Tesco delivery was anything to go by, we knew that we definitely weren’t going to go hungry!

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Tesco delivery!

Once everyone had found their rooms, we all settled in and got to know each other over a lovely home-cooked spag bol.  Some people had been to Shine events before and knew a couple of members of the group, but for others this was the first Shine event that they had attended.  Everyone understandably had some anxieties about spending the weekend with new people, however that soon dissipated when we realised that we were all in the same boat.  

On Saturday, most of us braved the British weather and headed off to the local market town of Beverley for a bit of an explore around the shops and market stalls, and we also grabbed a bite to eat while we were out.   Afterwards, we headed back to the house to either rest, play games, or go for a wander in the surrounding grounds. At this point we were also joined by the lovely Rachel (who used to volunteer to run the north East network)! pasted image 0 (5)

Once we had spent some time catching up, it was time to jump in some taxis and head out for a lovely dinner in the local village pub.

Sunday was again a relaxed affair. Some of us stayed at the house to play games, while others went off for a walk.  The walking route ended up being a bit longer than anticipated but everyone ended up safely back at the house in time for a home-cooked roast dinner before half of the attendees packed up and made their way home.

On the final night, those of us who were left had some drinks and played some more games….Cards Against Humanity anyone?!

The next day, we were all sad to leave because it had been such an awesome experience! Those who had come not knowing anyone now no longer feel quite so isolated (especially as we have an active WhatsApp group to stay in touch) and the general consensus from everyone was that they would definitely recommend our retreats to other Shinies!

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Pub!

On that note, the next retreat that we have planned is in Dorset from 17th to 20th May!  If you are interested in finding out more, please drop me an email to find out more (rosie@shinecancersupport.org)!

Get yourself Connected!

About five years ago, a few of us at Shine HQ were having a coffee and chatting about why the UK didn’t have a conference for younger adults with cancer. After looking around a bit more (and confirming that there was indeed no such event), we took a deep breath and decided to do it ourselves!

We’re excited to be bringing back Shine Connect for a fourth time, for a gathering that’s bigger and better than ever before. We’ve kept the stuff that participants have liked (hello therapy dogs!) and added new and different sessions to cover topics that you don’t typically see covered anywhere else!Connect 2

What can I expect?

Shine Connect is a friendly conference – it’s got some conference-y type activities (like panel discussions and workshops), but it’s also an event where you’ll be able to meet other young adults with cancer. This year, we’re holding a pre-conference coffee & croissant session. If you’re coming alone or are just feeling a bit nervous about spending the day with strangers, register for this session! You’ll be met by some of our friendly volunteers who will introduce you to other conference participants. By the time we kick off at 10am, you’ll feel like you’re with old friends!ShineConnectGroupPhoto2018 (2)

And no, there isn’t a dress code (just wear what you feel comfortable in!).

What kinds of sessions will there be?

Every year, we survey our volunteers and online community to come up with a list of topics for Shine Connect. We then set out looking for experts that can cover those topics – it’s never an easy task but we give it our best! This year, we are super excited to have a number of never-seen-before discussions on some important topics:

Alternative routes to parenthood: We’ve often run sessions on fertility after cancer (and we’re still doing it this year!) but we know that a lot of those we support would like to become parents even if they can’t have their children naturally. We’ve lined up an amazing panel who are going to talk about egg and sperm donation, adoption and surrogacy. We looked far and wide for someone who has had cancer AND a baby via surrogate but they were very few and far between! We do, however, have the lovely Ben coming to speak about surrogacy – he’s just had a baby with his partner and is super knowledgeable about the surrogacy process in the UK and abroad. And our other speakers are experts too!

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Ben (with his partner and their new daughter) will be speaking about surrogacy.

Man Up! We’re very happy that the award-winner trainer Paul DuBois is coming to Shine Connect and running a session especially for men on managing stress and anger. There won’t be any sitting around in a circle sharing (promise!) but it will be a great opportunity to talk to other men going through cancer and think about how you might be able to understand and manage the tough emotions that cancer can bring up at little bit better.

Menopause: Whether you’ve had a cancer that directly impacts your hormones or not, many women who go through cancer treatment either end up in menopause or facing early menopause as a result – and it’s not talked about enough! In this session we’ll have a panel talking about how they’ve managed early menopause and we’ll also be hearing from Dr. Rebecca Lewis, a GP with special expertise in menopause (and no, we didn’t

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Dr. Rebecca Lewis, one of our panellists on menopause.

know that was a thing either!).

As if all of that wasn’t enough, we’ve also got sessions on:

  • Getting moving after cancer, with Gemma Hillier-Moses of MOVE Charity
  • Supporting children through a parent’s diagnosis, with Dr. Caroline Leek of the Fruit Fly Collective
  • A chance to get your boogie on with Emily Jenkins of Move, Dance, Feel
  • Dating after cancer (where we will discuss at which point you might consider telling your partner that you’ve had cancer!)
  • Fertility after cancer
  • A session on relationships and how they change after a cancer diagnosis.
  • We’ve also go a session especially for Plus Ones – if your partner, family member or friend would like to come along, they can join this session and meet others supporting young adults with cancer.

And to close the day, we’ve got the fabulous Dr. Stuart Anderson coming to speak about chemo brain. Can’t quite remember what that is? Well, it’s the cognitive changes that a lot of people experience as a result of cancer and cancer treatment – and Dr. Anderson, a neuropsychologist, will be talking us through why it happens as well as looking at ways that we can manage it.

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Prof Stuart Anderson will be giving the keynote on “chemo brain”.

Anything else going on?

Why yes! We’ll have free massages and a virtual reality pod where you can try to climb a mountain or chill out by a beach. And by popular demand, the therapy dogs will be back (though, as always, we’ll keep them in a separate room so if you don’t like dogs, don’t worry!). We’ll also have a marketplace with lots of other great organisations who support cancer patients.

And of course, Shine staff and volunteers will be on hand to tell you more about Shine and the work we do.

Sounds great! How do I register?

Simply head to HERE and register! You can sign up for the sessions you’d like to attend, let us know about your dietary requirements and also ask questions that you’d like to see answered in the session.

Tickets are £25 for young adults with cancer and the friends/family/partners. If you’re on benefits, we do have some bursary places available, as well as some travel bursaries. Just drop us a line at connect@shinecancersupport.org.

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Neil, one of Shine’s volunteers

Still feeling unsure? Neil, one of Shine’s volunteers said this after he came to Shine Connect 2018:

Definitely go for it! Shine is such a lovely, friendly community. I was chatting to people all day who had come to their first event and were nervous but everyone made them feel so welcome. I think everyone that goes remembers how nervous they were before their first event so they go out of their way to help others feel comfortable. What have you got to lose?!

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! 

On being a Plus One

On 9 March we ran our second ever Shine Plus Ones workshop in London. We were joined by the partners, siblings and parents of young adults who are living with cancer. It was a great day that covered some tough subjects but we left feeling like we’d spent the day in the company of nice people (always a bonus if you’re going to spend your Saturday talking about cancer!). We are also really grateful that one of our Plus Ones, Chris, wrote a blog about the day so that we didn’t have to! Whether you’re a Plus One or not, take a read – it’s so important that, in addition to the person with cancer, that those around them get the right support too.


Hello, my name is Chris and I’m a Plus One.

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Chris and his fiancee, Kirsty

Three months ago my 32-year old fiancée was diagnosed with cancer. An adenocarcinoma of the submandibular gland – salivary gland cancer. She’s had surgery, healing, radiotherapy and now more healing, with plenty of tears, pain and mucus involved. Mentally she’s doing pretty bloody well considering. It’s a rollercoaster, as well you’ll likely know if you’re reading this.

For me, my fiancée’s diagnosis came off the back of my mum finding out that she had Non-Hodgkin’s Lymphoma 11 years ago, at the age of 51. A few months later, her 53-year old brother was diagnosed with bone cancer and died within months.

Anyway, what I’m getting at, is that it’s been tough, right? I was 22 when my mum was diagnosed and that was scary. Now I’m 33, and man, I’ve just got onto a much bigger rollercoaster.

Support

The last few months have been tough. There’s been support – some fantastic NHS surgeons, registrars, consultants, nurses, radiographers, receptionists, dietitians, speech therapists, and physios. And we’ve been lucky to have access to some brilliant Macmillan nurses, coordinators and counsellors. But the one thing we’ve been missing? Young people. Friends our age don’t always get what we’re going through, and frankly why should they?

It’s tough waiting for appointments in rooms of 30 people, all looking at least 30, 40, even 50 years older than us. Of course it’s sh*t for them too – no one should have to go through this, no matter what age. But there are differences when going through this at our age, and that’s where Shine comes in.

Shine Plus One

We found Shine after some helpful recommendations. We joined some online groups and pencilled in a few diary dates – for me, it was the Shine’s Plus One Workshop, for my fiancée, some meet-ups, and for both of us, Shine’s Connect conference in May.

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At the workshop with Salma, one of the Plus Ones volunteers

A few weeks passed and I was on a morning train up to London, with my fiancée resting at home with morphine, Breaking Bad and her sister to help out.

Arriving at Somerset House I was welcomed with loud hellos, broad smiles and hot tea – a pretty good start! There were a dozen or so of us there, mostly new to Plus Ones and understandably a little nervous.

We settle in with Emma (one of the co-founders, and an excellent facilitator of what is a tough crowd, let’s be honest!). She laid out the plan for the day and put us at ease. Emma gave a little context and talks about what the charity does. Short answer: some bloody great work (though you can find out more details here). One thing that’s evident is the many friendships formed through Shine’s activities. It becomes clear that these friendships are genuine and numerous the more the day goes on, with references to funny stories of people in the room or those they support, and photos from events full of hugs and smiles.

Morning half

An icebreaker is there to break any tension and put people at ease, and without giving anything away, Emma did a great job. We were introduced to each other, to our situations and to what we were looking to get from the day. There were some tears, naturally (myself included), but there were plenty of laughs there too.

The conversation turned to talking about support from friends and family, and how so many people get it so wrong or do so little. There were lovely stories as well though – people happily being pointed in the direction of a cooker, cleaning products or a lawn mower. We ended feeling significantly better equipped to request help from those who offer it.

We had a great first few discussions but stomachs were rumbling, so we went off to lunch. There was mingling and conversation over a generous amount of sandwiches, salads and snacks (the remainder of which is later donated to two nearby homeless gentlemen). We referenced the great experiences of the NHS, and the not so great ones. And we all agreed that if you want anything done then quiet compliance just isn’t going to cut it!

Afternoon half

Coming back from lunch I paused to consider how well it’s going – I already felt more supported, more understood, less alone.

Kathy (a kind counsellor who works with families and patients in hospitals) facilitated a discussion around themes of loss. We broke off into groups and the expected came up – certainty, spontaneity, plans, time, but also some of those things that feel unique to those of our age that are facing this – loss of future family and career.

The topics were fed back to the group and then we discussed coping techniques, and even some of the gains you can get through this process – strength in your relationships and worrying less about the little things, nicely named by one of the participants as ‘give-a-f**k-ability’!

We then moved to talking about coping with worry. We talked about how you can feel knackered from being constantly tense, and waiting for more bad news. We talked about techniques to help with worry – writing worries down, drilling in and fully understanding them, or even dedicating some worry time in the day, leaving you free elsewhere.

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Ways that the Shine Plus Ones cope with worry and stress

As it was nearing the end of the workshop now, Emma slowed things down a little and gave us some time for ourselves with a relaxing eight minute mindfulness exercise. We slowly came around and drifted over to the bar, conveniently located in the room across from us.

Pub half (yes that’s three halves!)

The chats continued and moved seamlessly between how we’re coping and the everyday. We learned a little more about each other – walks were organised and details exchanged. We were just another group of people chatting in the pub, not defined by what we’re going through. Not defined by cancer.

And process!

I reflected on the day during my journey back to down to Brighton. I’m amazed at how much impact it had, how quickly I felt connected with the group, how much we laughed, how much we understood each other, how similar our experiences have been.

It wasn’t forced, it wasn’t awkward, it wasn’t a barrage of sadness. It felt normal, useful, fantastic.

I was left thinking “how can I help”? Help fundraise for a excellent charity, help others access what I got, help others understand the benefits. I’m starting with this blog.

If you’d like to get in touch with other Plus Ones, you can request to join our Shine Plus Ones Facebook group (make sure to answer the questions!). You can also drop Salma (a Plus One herself) a line at plusone@shinecancersupport.org to find out about meet ups and events. 

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.