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!