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.

Chris and Kirsty

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.

IMG_2892

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.

IMG_2898

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

 

portrait_RichardSimcock

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?’

yellow spiral notebooks

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

person holding twist pen sitting on chair near laptop and notebook

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

portrait_RichardSimcock

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.

checklist-composition-handwriting-1226398

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.

blur-cellphone-depth-of-field-1251853

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.

Moving on – with the help of broken crockery

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


Karen Myers 3

Blog author, Karen Myers

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

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

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

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

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

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

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

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

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

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