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. 

Coping with anxiety after a cancer diagnosis

As we dive deeper into 2016, we’ve noticed a lot of talk on our social media sites about anxiety.  Is it normal to feel anxious after a cancer diagnosis? What about after cancer treatment? To help you kick off the new year and get the best out of the next 12 months, we’re delighted that our longtime friend, supporter and all round Shiny person Emily Hodge (aka Coaching Emily) has written a blog about coping with anxiety after cancer. Take a read below, try out some of the techniques – and know that you’re not alone.


Coach Emily Hodge
Coach Emily Hodge

Having worked in both the NHS and health charities and then experiencing cancer myself, I have seen how prevalent anxiety is among the general population. It can be event more prevalent within the cancer community, given the uncertainty and the threat to life that a diagnosis brings.

In my coaching and therapy work with clients, we discuss and use a range of techniques that look at supporting ourselves with anxiety and moving forward in spite of it. They’re not ‘cures’ for anxiety but rather activities or routes to take depending on someone’s circumstances. Here are a few of the many.

Recognise anxiety

Being aware of how you’re coping and what reactions you have to certain situations are a start to recognising anxiety. Often we get so used to a state of mind that we forget to assess it, but understanding our tolerance for it is important. We might think it’s normal to cry in the toilets at work once a week, or to feel anger and guilt all the time but it doesn’t have to be – this might be anxiety rearing it’s head and you might need support with it.

Take a look here and here for trusted sources regarding signs and symptoms of anxiety.

Talk about anxiety

If you’ve recognised it and realise it’s not something you can cope with right now, please see your GP or another trusted person for guidance. Talking about it with someone you feel comfortable with might be the step that helps you next.

Slow down and breathe

Before we can take any big action, we may need to catch ourselves and slow down. Stopping, breathing and slowing our racing thoughts can be the first thing we choose to do when we recognise something uncomfortable. We might want to run (the so-called fight or flight response) but if we can stop rather than rush around, it can be the beginning of a different relationship with our thoughts and feelings.

One quick technique to try is the “5-5-5” breathing technique:

  • Stand up with both feet stable on the floor
  • Look forward with eyes into the distance or closed and hands by your sides
  • Take a deep breath in for 5 seconds
  • Hold this breath for 5 seconds
  • Exhale for 5 seconds
  • Repeat this 10 times (or as long as you feel comfortable) and then check out how you’re doing

Recognise when we last felt less anxious

When we’re in a calmer state (maybe after the breathing or perhaps completely separately), take a moment to think about the times when your anxiety is less present. What are these situations, what time of day do they occur, what happened just before and just after? These indicate times that you feel different, bringing in an awareness of how your mood changes and can help you to recognise that you don’t feel the same way all the time.

Recognising how you’re feeling is important with anxiety because it can trick us into thinking that we’re always like this, and it never changes. If we’re able to see that it does indeed change over time, then we can start to understand our triggers and think about how we could respond differently in the future.

Work out what you love 

Similar to the above, spend some time thinking about what you love. What is it that makes you lose track of time, the thing that helps you forget yourself, the activities or places that you simply love? How possible is it to go to or get more of these in your life? If it doesn’t feel very possible, what might need to be moved or changed to make it more possible? What does even just thinking of this activity do for you?

Get outside

People can get evangelical about being around nature but there’s a reason for it! Evidence shows that being around and able to see green aids feelings of calm. Find the bush at the end of your street if there’s no park to go to – what is it doing? How does it smell, look, feel? It’s a small, small thing but have a go and see what happens.

Equally, go outside and look up – what do you see, hear, smell, and feel? When did you last look up outside?

Finally – walking (however you enjoy it – on your own, with friends or family, a dog, a podcast, music) is a great way to move us into a different state.

Therapy

More formal support can come in many forms – there are talking therapies such as counselling and Cognitive Behavioural Therapy (CBT) which may be available through your local NHS, other therapies such as mindfulness, or body work like acupuncture, the Emotional Freedom Technique, massage, or Reiki. We’re all different and knowing what suits us is important, but you don’t have to do it alone. If you need help to find the right support, try talking with a friend, asking a therapist for a free 20-minute phone consultation, or making a GP appointment.

Medication

Many people might think of anti-anxiety drugs or anti-depressants as a last resort, but they can be a brilliant way to help with the change in chemistry that is going on in the body, particularly following chemotherapy, radiotherapy or surgeries. Medication may not be for everyone, but for others it might be just the route to be able to access other support in the first place.

Finally we might feel pressure to ‘solve’ our anxiety because there are so many apparent routes to doing so. But it can be important that we first understand what it is we are dealing with, and how we’re coping before we’re ready to do anything about it. Give yourself a pat on the back for reading this and look at it again when you’re ready.

Emily is a health psychology specialist who worked in the NHS before her own cancer diagnosis. She now runs private one-to-one, group coaching and therapy to support people during and after challenging times in their lives. She’s worked with Shine for over five years and regularly sees cancer clients. Check out her anxiety vlog and website here www.coachingemily.com

Life – but not as you knew it: Talking it out

A cancer diagnosis changes everything.  Whatever cancer you’re dealing with, whatever treatment you’ve had (or are having), adjusting to life after you hear the words “You’ve got cancer” are never easy.  In our blog below, Viv Wilson shares her experience of cancer treatment and how valuable counselling has been in helping her to cope with all the changes she’s experienced.

At Shine, we know how important the right psychological support can be. We also know that less than half of all younger adults facing cancer get offered counselling – and that’s not good enough.  Many hospitals offer free counselling for people going through cancer treatment. If you think you’d benefit, ask your consultant or clinical nurse specialist for a referral. And remember that Shine’s meet ups  are a great way to meet others who know what you’re going through.

Talking it Out

Guest blogger: Viv Wilson

Profile pic

I was diagnosed with widespread, high grade DCIS (ductal carcinoma in situ) in my right breast in June 2012.  At the time, I was a 42 year-old single mum with twin teenagers.

My mum had breast cancer at 45 and later died of pancreatic cancer.  As the same thing had happened to her mum, I went for genetic testing. As it turned out, I don’t carry any of the known breast cancer genes but I decided to have both breasts removed as a precaution. I asked the surgeon to give me temporary implants so that I didn’t have to be flat chested.  I had a bilateral mastectomy and my new breasts looked great.  But ten days out of surgery I developed a massive infection in my left implant and I had to have it removed. In May 2013, I had the right one removed as well.  It was then that my world crashed around me.

The whole reason I had asked for temporary implants was to avoid being flat chested. To end up like flat chested anyway, after all the surgeries, was a real shock.  I just couldn’t accept the way my body looked.  My stomach stuck out beyond where my breasts should have been which made me really upset.  I felt like I looked pregnant and had I nightmares about getting dressed. I also hated the “softie” breasts that the nurse had given me. Putting them in my bra was just a reminder of everything I’d been through and they often moved around so much they ended up under my chin rather than on my chest!

After my diagnosis and surgeries, I often felt that I couldn’t quite be myself around my family and friends. I am happy and jolly by nature and I didn’t want that to change, but lot of my time seemed to be spent looking after the feelings of everyone else rather than my own.

I wasn’t offered any counselling after my mastectomy.  I did speak to the breast care nurse at the hospital, who was fantastic, but I always felt like I was bothering her, as she was so busy. I felt cast adrift.

It was only after I had the right implant removed privately that I found out about a counselling service that was offered at our local hospice.  I was given the number of the counsellor and decided to give them a ring.  I was feeling so low that I didn’t really have anything to lose.  Counselling is part of my own job so I also knew what it entailed and it didn’t frighten me.

I have always suffered with depression, anxiety and panic attacks but until the diagnosis I was coping with things much better.  Having gone through cancer, it reared its ugly head again and I felt like I was back to square one.  There was so much to think about: Why did this happen to me?  Will it happen again? How do I feel about my body now? How do other people view me?  Do I want reconstruction?  What happened to the me I used to be? The list of things going round in my head was endless.

When I started the counselling, I found that I really needed to talk over the traumas I’d been through, from having weak veins and having the nurses spend a good couple of hours every day trying to get 4000mg of antibiotics into me, to what having no breasts meant to me and how I was going to recover.  But one of the most valuable things for me about having a counsellor is that it is my hour to say what I want to, however I want to.  I have a chance to talk about my fears and worries in a place where I don’t feel judged and I don’t feel as though I’m are going to offend anyone.  To have that release once a week was – and still is – immense.

I have been able to talk through all of the issues I have with the things that have happened.  Although the counsellor doesn’t try to give me solutions, she helps me to work things out myself and has made me realise that many of my thoughts and feelings are normal.  We have also talked about the loss of my mum five years ago and my feelings about how things might have differed had she been here.  There is an endless pot of emotion to wade through or at least that’s how it can feel sometimes.

If someone had told me a couple of years ago how this experience was going to affect me, I wouldn’t have believed it.  I haven’t got to the point where I’m ready to move away from counselling but luckily I’m able to keep going until I feel ready to stop.  Counselling isn’t for everyone, but through it, I have been able to discover who I am and work out where I fit into the world again. What it has also done is to help me to accept who I am now and that this body is my “new normal”.  I have taken myself off the waiting list for reconstruction which feels like a real step forward in accepting where I am today.

If you feel it would do you good, give counselling a go and see if it helps.  Go in with an open mind and get out of it what you need. After all it’s your life, your body and your future.

Viv blogs at http://vivsmiles.wordpress.com