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: One new immune system and two birthdays

There are lots of different types of cancer and, increasingly, just as many different types of treatments.  While many people with ‘solid’ tumours receive surgery, radiotherapy and chemotherapy, blood cancers sometimes require a slightly different tack.  In our new blog, Helen shares her experience with a stem cell transplant for Hodgkin lymphoma and discusses how her vocabulary – as well as her health – have changed over the last few years. We’d love to know what you think about the blog so please get in touch by leaving a comment or tweeting us on @shinecancersupport.


Helen Photo 1
Helen in Australia in December 2014

Let’s just say that science wasn’t my strong point at school. Now I wish that I could go back to my biology teachers and confuse them with the words like ‘chimerism’ that are now part of my regular language. For all its unpleasantness, having a donor stem cell transplant at the age of 33 has given me more than just a wider vocabulary.

In September 2010, I had just got married, celebrated my 30th birthday and moved to beautiful Gloucestershire, ready to start a new life with my husband. I had been a primary school teacher in London and was keen to find a new job in the countryside. A few short months later, I was diagnosed with Hodgkin’s lymphoma and any ideas of an idyllic life were put on hold.

I had ABVD chemotherapy and radiotherapy and achieved remission. However, months later, the cancer returned. I had to have more intensive chemotherapy and was told that I would need a stem cell transplant.

I had heard of bone marrow transplants but wasn’t sure how they differed from stem cell transplants. It turns out that the process is the same; the only difference is where in the body the cells are taken from. I knew something about how transplants work; high dose chemotherapy is given to kill off immunity, then replaced by new stem cells in order to create a disease-free immune system. However, at this stage I did not know that there are two types of transplant – one that uses healthy stem cells ‘harvested’ from your own body (autologous) and one that uses stem cells from a donor (allogeneic). Because I hadn’t responded as hoped to the second round of chemotherapy, the decision was made for me to have a donor transplant.

To be a donor, someone must have a ‘matching’ tissue type. My sister was tested, but was not a match. My only hope was to rely on the worldwide database of people who are willing to donate their stem cells should someone need them. So here’s to my match – an anonymous man from Germany who selflessly donated his stem cells to me, a complete stranger in England! If he hadn’t signed up to the register, who knows where I would be now?

Once I learned more about what it involved, my mind was full of questions. How long would I be in hospital for? With no immune system I would have to stay in isolation; how would I cope? How long would it be before I could go back to work? How would we manage financially? Would I get Graft versus Host Disease (which is where the new cells are recognised as ‘foreign’ and rejected by the body)?

Realising that I would be spending a long time in my hospital room, I decided to make it feel as homely as possible. I decorated the walls with photos and inspiring quotations (laminated, of course, so that they could be cleaned every day!). Instead of the hospital pillow cases the nurses let me bring my own from home as long as they were changed daily. I brought in a selection of DVDs, a laptop loaded with games, plenty of books to read and my adult colouring books, which I find helpful to relieve stress.

Some days, the most that I could achieve was to have a shower, but I made sure that I did this every day as it helped me to stay motivated. I also read about and practised mindfulness techniques which I found invaluable for dealing with all that was happening. Fortunately the hospital I was in had Wifi, which meant that I could stay in touch with family and friends over Skype.

Helen Stem Cell
Helen’s new stem cells!

My new stem cells were given to me on 9th October 2013. I remember seeing them arrive by courier in a yellow bag and thinking that someone in the hospital was getting a pizza delivered! The process of receiving the cells was a bit of an anti-climax. It took around 40 minutes and was just like having a blood transfusion; the bag of blood cells was infused through my central line. The day that a transplant patient receives a new immune system is often seen as a new ‘birthday’. Apart from transplant patients only one other person has two birthdays a year and that’s the Queen!

After five and a half weeks, I left hospital. I still had to go for check-ups every week, partly so that the doctors could check on my ‘chimerism’. This refers to the percentage of donor cells in the blood and it is desirable after a transplant to be as close to 100% donor as possible. Although when I left hospital, my chimerism was good, by February 2014 it had gone down and I needed a ‘top up’ of my stem cells. This required an overnight stay in hospital but my chimerism has been going up ever since.

As soon as I was able, I went back to work in a Further Education college, a job I had started after my first remission. It was a change from my previous job but I enjoyed it. I visited Berlin, Spain, Hong Kong and Australia, all within the first year after leaving hospital. Almost a year and a half after my transplant I am having further treatment as some lymphoma has been found again in my body. However, because I have had a donor stem cell transplant, I can have another ‘top up’ of my new cells which, it is hoped, will get rid of the cancer for good.

I thought that moving to a different part of the country would make things harder to deal with, but it has actually helped me physically and emotionally because I could explore new places when I was well enough times during my treatments. Having so many changes in a short space of time showed me that I am adaptable and whenever I feel angry at having had to go through a stem cell transplant, I think of some of the things that I have been able to enjoy because of it: becoming a regular practitioner of mindfulness, going to four different countries in one year, having two birthdays and enjoying a new career path to name but a few!

Helen is a former primary school teacher now working as a Learning Support Assistant in a college of Further Education. She lives in Gloucestershire with her husband and Eric the cat.

You can register to donate your stem cells via Anthony Nolan, a charity devoted to saving the lives of people with blood cancer. 

Coping with fatigue after cancer

Fatigue after a cancer diagnosis is one of those issues that many people experience, but that few discuss and even fewer understand.  At Shine, we know that cancer fatigue often lasts far longer than the period when everyone expects you to be ill – if you’ve finished your treatment, friends and family often expect you to be back to normal relatively soon. And if you’re living with a chronic cancer, you might not look ill or tired, making it even more tricky to explain to people exactly why you feel so wiped out.

In this week’s blog, Sam shares her experiences of coping with fatigue, the impact is has, and how she is coping. Please share this if you can – the more people understand how tiring cancer is the better!


 

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Guest blogger: Sam Reynolds

The first virtue in a soldier is endurance of fatigue; courage is only the second virtue.
– Napoleon Bonaparte

Living with cancer-related fatigue is like walking through quick sand. You constantly feel as if something is pulling you down or that you’re fighting a current. Whether you are going through treatment, recovering, or moving forward, once you have succumbed to the drugs and/or surgery that help your body fight the cancer, it’s as if your body has crossed a line and you can’t turn back. Fatigue is the shadow that the drugs leave behind, and I don’t think my energy levels will ever go back to what they were before cancer. I battle with this every day and have done since I first had chemotherapy eight years ago. After two rounds of radiotherapy, seven years of Tamoxifen, three operations and now Zoladex, believe me when I say that fatigue is something I have had to adapt to for a while.

One could argue that at this particular stage of my life, tiredness is very common. Running after small kids, managing your home life, holding down a job and being busy with ‘life’ makes us all feel wiped out on a daily basis. But chronic fatigue is more than this; it is a state of mind as well as a form of exhaustion. It can become a vicious circle: as the tiredness gets worse, your mood gets lower and you fall into a spiral of depression. It’s draining and cancer patients often feel isolated because suddenly the difference between normal tiredness and cancer-related fatigue (CRF) are that much bigger.

An expert panel of the National Comprehensive Cancer Network (NCCN) recently proposed the following definition of cancer-related fatigue (CRF): a common, persistent, and subjective sense of tiredness related to cancer or to treatment for cancer that interferes with usual functioning. This fatigue differs from the fatigue of everyday life, which usually is temporary and is relieved by rest. CRF is more severe, more distressing, and usually is not relieved by rest.
– Roberto Stasi MD

The effect CRF has on being a mother, a wife and my day-to-day life are huge. It has become a standard joke that I’m in bed at 9pm, though this doesn’t always mean I sleep. Insomnia can be a brutal part of fatigue, brought on by side effects of certain drugs. I experience days when I feel like my body is made of lead and I am literally dragging myself out of bed. My mood can be low and the most basic tasks feel like a marathon, yet I know some people who experience this much more severely and consistently than me.

Everyone is different and what has worked for me may not work for others. Over the last few years I have found a few tools that have helped; this hasn’t been easy and I have had to actively make changes to my routine, diet and outlook in order to cope.

One of the things I’ve recently tried is to cutting out sugar. I am not about to preach about the different diets we can all try and all the ‘nasties’ we should be avoiding, but over the last few years it has become apparent to me how much my body suffers from eating refined sugar. Being the chocoholic I am, this has been a huge sacrifice! Still, I gave it up completely a month ago and think I already feel better. In any case, giving up sugar certainly isn’t bad for you!

After my second diagnosis I did a mindfulness course and, while it was a good distraction at the time, I failed miserably at regular practice. How on earth do you manage to sit and meditate with a three year- old who doesn’t nap anymore?!

 

After my third diagnosis, however, I realised that the pressure I was putting on myself to meditate every day wasn’t necessary. If I did it for five minutes three times a week, that was enough. Even having five minutes in bed before falling asleep at night is better than nothing at all. I also began to appreciate that mindfulness is simply a way of standing back once in a while and taking time to breathe properly. It is a chance to have some space to oxygenate my body. This, in turn, has slowly begun to make me feel more energised and calmer at certain times.

In the same vein, yoga has also become a proactive way of helping me manage my fatigue. I’m in the process of getting into a steady and regular routine with classes but stretching and breathing deeply has also slowly started to help, especially after my most recent major surgery.

Fatigue will always be a factor in my life and I regularly find myself rebelling against it only to crash and burn as soon as my body catches up. Having an understanding network around me has been hugely important, as has honesty. I often fall into the trap of looking like I’m coping even though underneath I am paddling like hell. Charities like CRUK have a lot of information on chronic fatigue and there are loads of ways they can help you deal with it. You may feel its one step forward, two steps back but at least you’re moving forward and there is nothing wrong with a step at a time!

Sam blogs regularly at samspaceblog.wordpress.com and tweets from @samboreynolds1.