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…

close up photography of fawn pug covered with brown cloth

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.

clear glass container with coconut oil

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.’

adult art conceptual dark

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

 

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. 

How pets can help you cope with cancer

When the going gets ruff, the woofs get going: How pets help us to cope with cancer

Sarah Carlin (33) who has small bowel cancer and lives in Liverpool, explores how Shine members’ furry Florence Nightingales are helping them live better with cancer…


I’ve been dealing with cancer since 2013. It’s as about as much fun as it sounds.

During a particularly dark period recently, I realised that one of the few things capable of raising a genuine smile was my dog Elsie, a Cairns/Yorkie cross with about nine teeth and breath like the bottom of a fishing trawler.

My 50th attempt at taking a selfie with Elsie

Sarah and Elsie

I then remembered all the other times that pets had helped me through. Pre-diagnosis, when I would spend hours lying in bed, throwing up industrial amounts of green bile into a washing-up bowl, my mum’s cat Flo – who, it has to be said, would probably at that stage not have said hello to me in the street if she were human – would come to my bedroom and gently knead me with her little paws. When I was feeling better again, she’d get back to blanking me. During chemo, our family dog Bunk – a rescue Staffie cross who definitely missed his calling as a late 90s emo – would come up to my room and lay a heavy black paw on my stomach, as if to say “I understand”.

With a hunch that I wasn’t the only one being looked after by my pets in this way, I asked the Shine community about their own experiences with furry friends in Shine’s closed Facebook group. It quickly turned into a love-fest about all things on four legs, for the following reasons:

1. They’re a reason to get out of bed (and the house)

Alison's SuzyQ

SuzyQ

Owning a pet dog is like having a weird hybrid of a physical therapist, life coach and in-house dirty-protestor. Crippled by fatigue? So depressed you don’t want to get out of bed? Struggling after a big operation? They don’t want to hear it. They want you out of those PJs and taking them round the block, stat, or they won’t be responsible for the consequences. And they can’t promise that those consequences won’t be coming via their digestive system either. And even pets that don’t need to be walked – like cats and rabbits – need to be fed and watered.

 

The positive impact that this responsibility has can’t be

Fran's George

George

understated. One Shine member, Julie, remembered that her dog Izzy helped her recovery from an operation for bowel cancer by getting her active again just seven days after surgery. Fran, diagnosed with chronic myeloid leukaemia at 29, said her cat George was her “reason for getting out of bed every day, no matter how rubbish [she feels].” And Alison, who had treatment for breast cancer recalled that her cat SuzyQ gave her “a sense of purpose and unconditional companionship”.

2. You can share in their joy – without the complicated feelings

When you have cancer, especially as a younger person, you often feel disassociated from your peers. It’s great spending time with your friends, but sometimes it’s tough seeing the life you could have been living if the C-bomb hadn’t been dropped on you. You know, having babies, having hair, being able to get travel insurance without selling a kidney (which nobody would want to buy anyway, obvs) or just being able to plan something in three months’ time without factoring in worst-case-scenario scan results. Basically, whatever you’re doing, whoever you’re with, cancer is there in the background like a sinister ostinato, reminding you that life isn’t as you hoped it would be – something that can be really destructive to your relationships and your state of mind.

How pets can help you cope with cancer

Your interactions with pets will carry no such baggage, however. You can truly be in the moment and share in their enthusiasm for life, whether that’s chasing a ball, trying to swallow a piece of cake whole or their absolute joy when you walk through the door after-surely-abandoning-them-forever (a.k.a. going to the shops for half an hour). You can share in their perfectly mundane triumphs with no complicated feelings. Unless, say, you had a real love for Chappie dog food but ate too much after a chemotherapy session once and now you’ve gone right off it. Or you used to love chasing mice but your oncologist has told you to knock it on the head because it’s an infection risk.

3. They bring the lols

How pets can help you cope with cancer

Elsie makes me laugh every day, whether through her world-class meerkat impression, her iron will or the fact that whenever we walk past the British Legion, she always, inexplicably, tries to go in (FFS Elsie, you’re barred!). And I’m not alone. Lisa, who has bone cancer, said her little dog Coco “brings a smile to my face every day…brings happiness and makes every day worth living.” And Christine, who has bowel cancer, said that her bunnies, Marigold and Juniper, “always make me smile even if I’m feeling awful.”

Christine's Marigold & Coco

Marigold and Juniper

 

4. They really care

I was blown away by the number of people in our Facebook who shared stories of the TLC given to them by their pets. There were dogs trying to ease painful legs, horses sensing when their owner was having a bad day and amazingly, given the fact that they have reputation for being the haughtiest of the household pets, an awful lot of very caring cats who would be a real asset to the NHS.

Lyndsey, who has Hodgkin’s Lymphoma, remembered that her kitten, Stinky – who she adopted during treatment – would carefully settle into the crook of the arm that didn’t have a PICC line in it and purr her to sleep. Another Shiny, Jo, who has metastatic breast cancer said that her “Bichon baby” Pixie who “curls up with me in bed when I feel poorly and keeps the cuddles coming when I feel low” helps her cope with her situation.

Jo's Pixie

Pixie

5. Sometimes, it seems they can perform their very own PET scans (boom!)

One thing I wasn’t expecting when I put my post up was the number of people who had stories about their pet appearing to try to alert them to the fact they had cancer. Tracey remembered that her cat would always lie on the breast that had cancer pre-diagnosis. Anne’s dogs Buster and Lucky started to repeatedly snuggle into her left armpit, which prompted her to do a self-check and find a lump that was eventually diagnosed as aggressive triple negative breast cancer. And one of Danielle’s dogs kept digging on her leg so much that it prompted her to go to the doctor in case she had some sort of infection. It was actually a chondrosarcoma. That animals can sniff out cancer is actually a recognised phenomenon; some sharp-nosed pets are already being used to assess urine tests in the NHS. You can read more about the science behind it here.

We loved talking about our animals and I’m so glad that I – and so many other Shine members – have pets that are helping us through some very tough times. Here’s to a very furry Christmas and a yappy New Year!

PS We couldn’t fit all the pet photos that were submitted into this story. But they’re below if you want a quick look at the Shine Super Pets!

It’s Breast Cancer Awareness Month – meet Emma!

October is Breast Cancer Awareness Month and, having shared the story of one of our Directors last month (for Blood Cancer Awareness Month), we thought we would share the story of Emma, our other founding Director this month. Diagnosed with breast cancer in 2006, Emma experienced the isolation that often comes with a cancer diagnosis and is all the more acute when you’re young. Way back in 2008, Emma started meeting up with other young adults with cancer and the roots of Shine took hold. Today, Emma runs Shine with Ceinwen and is Shine’s Director of Operations and Training. Read on to learn more about Emma and why Shine does what it does!

cein-emma-2

Emma (left), with Ceinwen at Shine’s 2016 Great Escape

When were you diagnosed and what with?

I was diagnosed with breast cancer in June 2006. I had two tumours and the cancer had spread to five of my lymph nodes. I also had unconfirmed spread into my breast bone and the lymph nodes in my chest so I’m still not 100% sure what stage my cancer is/was!

How did you find out you had cancer?

Early in 2006 someone drove their car into the back of mine while I was stopped at some traffic lights. I had whiplash and sprained ribs and was having physio. I found a lump in my breast that was next to one of my ribs so the GP thought it was a bleed caused by the accident but said he would refer me to the hospital anyway. When I finally got my letter from the hospital, the soonest they could see me was in 12 weeks time (this was before the two week wait was introduced in the NHS). While waiting for my physio appointment at a private hospital (I had BUPA through work), I noticed a sign for a specialist breast centre so I figured I’d get an appointment there as I had already paid my insurance excess! I was seen the following week and was sure that they were doing all of the tests to get more money from the insurance company!

I was so unconcerned about the follow up appointment that I went to receive the results on my own on the way home from work. The words from my doctor – “I’m really surprised but it is a little cancer” – will always stay in my mind. I remember thinking ”what’s a LITTLE cancer??”

What did you think and feel when you were diagnosed?

Because I had come in alone, the consultant suggested that I call my partner and come back in when he arrived. I was in shock. I can only remember certain phrases like “you’re so young that we’ll throw all of the possible treatment at you” and “normally we aim for five years survival but, with your age, we are going for 20”. I remember thinking that I would still be in my 40s after 20 years and that that wasn’t long enough.

Over the next few days, I went into planning mode to deal with work, friends, family and the huge number of hospital appointments that I suddenly had to fit in. Looking back, I coped by focusing on the practicalities such as finding pyjamas for hospital that buttoned up at the front (surprisingly difficult!).

How did the people around you react?

My partner and family were as shocked as I was. We had no family history of cancer and I hadn’t met anyone who had dealt with cancer at my age before. I really thought that it only happened to older people.

Everyone tried to help with practical arrangements but I avoided a lot of my colleagues and friends as I felt awkward dealing with their reactions. I lost count of the number of times I heard phrases like “but you’re too young for that” (I know!) and “my uncle’s brother’s wife’s sister had that – oh, she died” (thanks, that’s really helpful!).

emma-1

Emma during treatment

What treatment did you have?

I started with surgery to remove the original tumour but, when I went into surgery, they found another one. I had a lumpectomy rather that the mastectomy that would have been recommended if they’d known about the second tumour. I decided not to go back for the full mastectomy as my surgeon had got clear margins (it’s amazing how much jargon you learn!).

My oncologist then recommended a CT scan and a PET scan both of which showed up “dodgy bits” in my breastbone and the lymph nodes in my chest. At the time, I didn’t really understand the difference that made to my diagnosis but as the next lot of treatment would have been the same anyway, we went ahead with chemotherapy.

We also discussed the fact that I hadn’t had children and talked about options to preserve my fertility. My partner and I discussed it and decided not to take any of the options as they meant delaying chemo. I started my treatment with injections into my stomach to send me into a chemical menopause.

All together, I had 8 rounds of chemo, given every three weeks (FEC-T) and also started on infusions of Herceptin that went on for a year. I also had six weeks of daily radiotherapy to the remaining breast tissue and into my neck and I also started taking Tamoxifen tablets, (though I later switched to Exemestane). I stayed on the injections and tablets for 7 years in total. I used to say that I would rattle if I was shaken!

How did you feel through treatment?

The surgery wasn’t too bad as I was in a lovely, swanky private hospital with three course meals and a wine list! It was a bit scary having the anaesthetic though – and a bit weird coming round and finding myself halfway through a conversation that I couldn’t remember!

Going straight into menopause was also bit of a shock to the system. Overnight I developed massive hot flushes and sweats and felt like an old person when I tried to get up from the sofa.

The chemotherapy wasn’t as bad as I expected it to be but it did get worse as I went through all eight rounds. By the end of it, I had absolutely zero energy and felt like I’d been hit by a truck. My veins also decided to stop working so I agreed to have an operation to implant a portacath. This meant that the Herceptin could be given straight into a port under the skin in my chest which had a tube leading straight to my heart (sounds scary right but it definitely made life easier!).

My treatment went on for 7 years in total and I still take some tablets to deal with the after-effects of the treatment. After each type of treatment finished, I was worried about the cancer coming back as I felt like I was losing some protection they gave me. I still find the regular scans frightening though. I haven’t found a way to remove that ‘scanxiety’ completely but it is much easier with my Shine family around me.

Throughout treatment I thought that, once I was done with the main treatments, that my life would go back to normal. That never happened and when the hospital visits slowed down and treatments came to an end, I felt as if I had been abandoned to work out what came next. I felt like I was living in a ‘should be’ era – I should be feeling amazing that I’d come this far, I should be able to pick up my life from where it left off…. I am naturally a very positive person and I didn’t initially recognise that the feelings that I was having were of isolation, anxiety and depression.

It took nearly three years for me to admit that I was still struggling and to take steps to get help. It is not an understatement to say that my amazing counsellor, Kathy, changed my life completely. With her, I was finally able to sort through the mess of everything that I thought I ‘should be’ feeling and to talk through the experiences I’d had through treatment and beyond. At first I couldn’t understand how talking about it would help but it enabled me to face the anxieties I had been holding on to and to feel more empowered about my future, whatever that holds.

Tell us about your work with Shine

Throughout treatment, the “you’re too young” comments kept coming and the support groups that I attended were full of people showing me photos of their grandchildren! Eventually, I met the amazing Justine through a random breast cancer chat room. She was just a few years older than me and had also been through treatment for breast cancer. We met for coffee which ended up lasting four hours and I suddenly realised just how isolated I had been.

emma-2

Emma and Justine at the first Shine party in 2008

That meeting led us to start Shine (although we didn’t have a name!) and we decided that we should reach out to other younger adults with all types of cancers. In the first year we connected with over 100 people in Dorset and it felt amazing to make sure that other people didn’t feel as isolated as we both had. We had fun too, doing things that suited us (mainly bars and coffees!) rather than the standard cancer support group format. And thus, Shine was born….

Meeting Ceinwen in 2010 was the next brilliant coincidence. Ceinwen had been diagnosed with cancer shortly after having a baby (you can read her story here) and was looking to do something similar to Shine in London. We met for coffee, which again lasted 4 hours (be careful if we ever have coffee together!), and we realised that we had a lot of similar ideas about the lack of support that was available to younger adults diagnosed with cancer. Together we started work on the ‘Small c’ Project, the first research project in the UK to look at the needs of young adults with cancer. We then went on to develop a programme of activities and events that aim to meet those needs.

emma-3

Emma and Ceinwen with Shine Trustees Laura and Christopher

We also started setting up Shine Networks in other parts of the UK, giving people the chance to meet others in similar situations much more quickly that we had been able to.

The feedback and stories we heard from the people that Shine supported in the early days quickly made my career (banking – sorry!) seem much less important and certainly less rewarding. I eventually left my career in 2012 to fully focus on Shine. I have never regretted any part of that (despite the massive impact on my bank balance!) and absolutely love my job, even on a Monday morning – and at 2am on a Sunday as it’s not really a 9-5!

Nowadays, we are both still working hard to reach the 30,000 young adults diagnosed with cancer each year in the UK and to develop more programmes to fill the gaps in support that still exist for young people dealing with cancer.

What difference has Shine made to you?

Personally, I now have a huge network of people around me that just “get it”. I can talk to people about things I wouldn’t put on my “normal” friends. I also have people that also get the dark humour and the fact that you’re definitely not being ‘negative’ by talking about your funeral music or not planning too much for the future!

I love to feel like what we do makes a difference to peoples lives, and I still sometimes can’t believe what we have achieved in just a few years (mainly because I’m always thinking about the things that we need to do in the future!). In short, Shine has definitely changed my life for the better!

How do you feel now about your experiences? What‘s been the biggest change you’ve faced?

I’ve just passed my ten-year ‘cancerversary’, but the fear of my cancer returning is still there. Certain things still trigger the trauma of some of my experiences through treatment and I don’t think that will ever go completely. However, I am much more able to deal with the scary bits now and, of course, know amazing people who help and support me.

I don’t feel grateful for having cancer. Instead, I feel grateful that I have been able to channel my experiences into something that helps other people and also brings me personal joy and fun. I try not to stress over the small stuff and I honestly appreciate much more about the wonderful people that surround me.

emma-4

Emma in 2016!

If you could give one piece of advice to yourself before your diagnosis what would it be?

This is hard! I felt invincible before I was diagnosed with cancer and I think most people in their 20s (or 30s or 40s!) feel the same way unless they have personally experienced something really scary. I’m not sure I would have taken my own advice anyway but it would probably be to appreciate the people around you and the things in life that actually matter – and to make sure that you are living the life that you want, not the one that is expected of you.

More information about Shine’s impact and our history, staff and Trustees can be found on our website here. If you’d like to get in touch, please drop us a line at hi@shinecancersupport.org. 

10 ways to help a friend coping with cancer

We often post articles on Twitter and Facebook about what to say to a friend or family member who has cancer, or how you might help them. We’ve also noticed that these often get a huge number of hits! That got us wondering how the members of our growing Shine community have been helped by family and friends when they’ve been ill – so we asked them! We got some great responses and we’ve summarised them below. Have a friend in need? Take a look below and see if we can inspire you!


Message1. Let them know you’re thinking of them

“One of my friends sent me a card every week that I was in the hospital – and I was in there for a long time.  It was so nice to receive a surprise in the mail and to hear all her news.  I’m not sure she knows how much it meant to me but I’ve kept all the cards as a reminder of what a great friend she is”.

When you’re ill, sometimes just knowing that you’re still part of the land of the living is all you need. A text, a card, a phone call – no matter how brief – can make a huge difference to someone who hasn’t been out and about much, especially if you’re clear that you don’t expect a reply.  Being ill can be very lonely so knowing that your friends and family are still thinking of you can make a huge difference.

2. Cook

“A friend bought 12 homemade freezer meals at two separate points during chemo. Even though I didn’t feel like eating most of the time at least I knew there was something quick, easy and on hand for my husband and daughter. I was very touched at her kindness and effort”.

If you’re a whizz icookn the kitchen, there’s nothing quite like a homemade meal to perk up someone who isn’t feeling great. And even if they don’t feel like eating because treatment has done a number on their appetite, you might be easing their stress by making sure other members of their family have something quick and easy to eat when the hunger pangs hit.

3. Clean

cleaningNot big on cooking? How about cleaning? A lot of our Shine members mentioned that they’d had friends who had popped in to clean the bathroom and kitchen, or put fresh sheets on the bed (and do the laundry) while they flaked out in front of the tv.  There’s nothing quite like clean sheets and a nice fresh towel – and it doesn’t take very long either!

4. Hang out

“For me, I was happy just to have people to keep me company. I think as a young lad people don’t know what to say and some people found it easier to avoid me.  I was happiest when people just came round and played computer games or chatted, especially when I couldn’t do much else beyond letting them in!”

super-1138462_1920Your mate may not be up for a heavy night down the pub, but heading over to his or hers with a movie, a computer game or even a pack of cards can really boost someone’s spirits. Something that doesn’t require a lot of mental or physical energy – like hanging on the sofa – but keeps them involved in the world around them is often really appreciated.

 

 

5. Get them out and about

“I went to Glastonbury festival after my treatment and all my friends had to take it in turn to carry all my belongings and helping me hobble around. I felt guilty about ruining their fun, but in reality I genuinely felt they were happy to have me there.  This reassurance was enough for me.”

We get it – being around really sick people can be scary. But helping a friend by taking them out, even if they’re going to need extra support, can help them feel like they’re still participating in all the things that they should be doing.  Keep in mind that they might not be able to walk long distances or stay out late, but if you can pick them up and drive them to a restaurant, or help them carry their stuff without making them feel bad, you’re more than half way to making their day!

6. Entertain the kids

playground-691129_1280

Let’s face it, kids can be exhausting at the best of times. If your friend has little ones, why not take them out for an afternoon or come over and cook them dinner while your friend has a nap? If they’re old enough, an afternoon movie or a trip to the park could give your friend a much needed break.  Or invite your friend and the kids over. You entertain them while your friend chills out with a cup of tea!

7. Head to the hospital

Something that everyone with cancer knows is that it’s time consuming – and hospital appointments can take ages.  If your friend is spending more time with the nurses and doctors than his/her mates, why not offer to keep them company? Ask if they’d like someone to take them to the hospital, pick them up, or hang out in between.  Having someone to gossip to can be a great distraction from the blood tests, scans and doctor chats.

8. Walk their dog

12376834_10156672952605263_2785600398398241687_nDoes your friend have a pooch? Why not ask if you can help walk the dog a few times a week? If your friend is happy for you to do it, see if you can get a few other friends together and organise a walking roster. On a good day, your friend might just want company for the walk. On a bad day they’ll be glad to have someone do the walking (and poo scooping!).

9. Organise a treat

“One of the most helpful things was planning something nice for my husband and I to do or go for a treat on the week before my next chemo. These did not cost much or sometimes nothing at all but it was something to focus on in the rotten days”.

“My friends always organised a get together on “chemo eve”, which was lovely.”

Cancer can be expensive! Not only are you missing work, but you’re spending your money heading to and from the hospital, on parking charges, and on extra blankets and heating to keep you warm. If you’re looking for a simple way to cheer someone up, why not plan a night out to the cinema or a comedy show? Book tickets when you know they’re free and either take them yourself or organise for others to go with them. (One minor note of caution: if you can, check if there’s cancer in the movie at all. You’d be surprised how many people in movies die of cancer. It’s not what you need when you’re going through treatment!).

10. Help them celebrate

easter-eggs-lst035137.jpg-pwrt3

Having the energy for Christmas, Easter or a birthday can be tough when you’re coping with a cancer diagnosis.  Does your friend need help buying a tree or getting the decorations out? It can be hard for people to know what they need but asking specifically how their planning for a holiday is coming can open up whole new possibilities for help! Buy the Easter eggs, plan the hunt, decorate the tree, light the candles, buy the cake….the options are practically endless.

Got more ideas? What have we missed? Let us know! Comment below or Tweet us @shinecancersupp