From PE teacher to ski instructor – how coaching after cancer can help

In this guest blog post, Kaeti writes about how Shine’s coaching after cancer programme helped her to leave her old job and take her life in an exciting new direction.


What do you do when you realise that your ambition is no longer your ambition?

For as long as I could remember, I had wanted to be a PE teacher. When my friends in primary school were talking about being astronauts and vets, I wasn’t interested – all I wanted to do was teach. But being diagnosed with breast cancer at the age of 30 wasn’t in my career plan.

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Kaeti was 30 when diagnosed with breast cancer.

I really missed my job when I was on sick leave. However, at some point during my eight months of cancer treatment, I realised that I didn’t miss teaching. The problem wasn’t my workload (you might have been expecting that complaint!) – actually, I had no idea what it was. Still, I knew for a fact that something had shifted, and I needed to figure out what was different in order to move forward.

A couple of months into my treatment, I saw on social media that Shine Cancer Support was offering career coaching. This was just what I needed: someone to help me make sense of the fact that I desperately missed being at work, but also knew that my teaching days were numbered. I felt like a failure: teaching was all I had ever wanted to do. Before my diagnosis I had been certain that I would progress through the ranks to deputy headteacher, and maybe even headteacher one day. Yet now I was lost, and I didn’t know what to do.

I took up Shine’s offer of support and met Emily Lomax, my coach. Emily works over the phone or via Zoom, and for our first session I think I talked at her for 40 minutes. She listened patiently to my ramblings. My first session had coincided with my return to work. I was excited to be back, but I knew deep down that even though I loved the thought of being busy, being needed, and feeling focused again, the idea of being a teacher was distressing. Cancer had made me realise that I wanted change.

After that initial session, Emily sent me some tasks to complete. One was about prioritising my values and the other was about looking at my energy levels. I realised that my values hadn’t really changed since cancer, but that my energy at work had been affected. The majority of the time that I spent in my job, I was in the ‘burnout and surviving’ zone. After everything I had been through with my diagnosis and treatment, I needed to prioritise recharging in order to thrive. We discussed these tasks and Emily lead me to realise that as a teacher, I could do other things. I was focusing on the fact that I had a PE teaching degree and ‘that only qualifies me to teach PE.’ Emily got me to think about all the transferable skills I have that could be beneficial in other sectors.

After this session I decided to jazz up my CV. CVs are not widely used when applying for teaching jobs, so mine looked sad and dated. Comic Sans? What was I thinking?! I’m a keen skier, and I remembered that a friend who works in the industry had offered to pass on my CV to his company’s head office, should I ever want to move out of teaching. I sent him my CV, and also passed it to some other skiing companies. In the meantime, I finished my sessions with Emily and began considering my options. Should I stick with teaching? It paid well, and I was good at it. Should I pack it all in and do a ski season? Should I re-train as a cancer rehab personal trainer? Should I go abroad to teach? These questions were exhausting, but relevant. Whenever I considered an option I revisited Emily’s energy task handout, and that helped me decide the way forward.

Emily had helped me to understand that I love organising events. It was easily the best bit of my job. I needed to remember this and not let the pull of money, a secure career path, and pressure from colleagues change my mind. A few weeks after my last session with Emily, I got an email from the Head of HR at my friend’s skiing company. She was very complimentary of my CV (I had updated the font!) and invited me to the head office to discuss some job opportunities. I went for the chat during the Easter break, and a week later – while doing some holiday work for a different ski company – I realised that it was time to move on from teaching. It wasn’t failure, it was acceptance of my changing circumstances and the fact that I was allowed to have new ambitions. My ambition of being a PE teacher was over 20 years old. It was time to do something new.

A week later, the ski company contacted me to offer me the position of events coordinator. I was hesitant at first as the job was mainly office-based, and I asked for a couple of weeks to consider. I was away with friends when the company replied to say that they had reviewed the job and that 3-4 months a year could be spent in the Alps working remotely and taking responsibility for trainee ski instructors. It felt like all my Christmases had come at once! I handed in my notice and I finish teaching at the end of this term. The minute I handed the resignation letter to my headteacher, it felt like a weight had been lifted.  I was somehow so much lighter: much lighter than I had been in months, maybe years.

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Kaeti takes on the slopes!

When I was considering the job offer, my mum told me ‘the world is full of teachers who have given up teaching, and teaching is full of teachers who wish they have given up teaching.’ It’s taken cancer and career coaching for me to realise that it’s OK for your ambitions to change. It’s not failing to want to do something new and different. I am VERY excited about my new start and even more excited about spending next ski season in the Alps, thriving and recharging! Thank you so much to Emily and Shine for the gentle shove in the right direction.

Shine’s 2019 coaching after cancer programme is currently in progress – but follow us on social media for details of our 2020 programme!

Life – but not as you knew it: Living with chronic cancer

The general perception of cancer is that you get it, you treat it, and then you’re cured. Anyone who has had cancer knows things aren’t quite so easy; cancer treatment can leave you with long-term side effects and it’s often impossible to know whether you’ve been cured or not. There are also ‘chronic’ cancers that can look to those who aren’t in the know like they’re not cancer at all.

In our latest blog, Sarah writes about living with Chronic Myeloid Leukaemia (CML), a blood cancer which requires daily treatment.  Sarah was one of the first women in the world to give birth while on Glivec, a drug which has revolutionised CML-treatment but which can have difficult and disturbing side-effects.  Take a read and let us know what you think. Whatever your health status, we’re sure you’ll agree that Sarah has an important story to tell.


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Guest blogger: Sarah O’Brien

I discovered I had leukaemia by accident.

I was 30 years old and was at the peak of my fitness, running 5 miles every other day and doing aerobics twice a week. I was juggling an NVQ Level 2 Gym Instructing course with being the single mum of a toddler. I had also recently recovered from severe post-natal depression after the birth of my first child three years earlier and was getting over a marriage break up. But my new boyfriend, Kevin, had just moved in with me and we had started to make plans for a future together……things looked really good.

As I had been on medication for depression it was a routine procedure to check my liver count. At one GP appointment, the nurse wasn’t sure what box to tick on the blood-screening test so she decided to tick all of them and my bloods went off for analysis. A week later I was told to go to my local hospital and have a blood test done with a haematologist. The doctor indicated that there could be a problem but advised me to go back to my GP in a month for another blood test. A couple of days after I did that, I received a phone call telling me to go to the hospital the next day. When we got to the waiting room all I could see were leaflets for HIV and cancer.

After a long wait, I was called into see Professor P. I had some more blood tests done and he checked my spleen. He asked us to return in an hour so he could analyse my blood. When we returned, he told me that I likely had Chronic Myeloid Leukaemia (CML). My world crashed around me.

Nine months before I was diagnosed, I lost my Nana to non-Hodgkin lymphoma and Kevin had lost he dad to cancer the year before, so to be told that I had cancer too was a huge shock. On the other hand, we were able to connect some dots. All of a sudden I understood why I had been a lot more tired than usual, and why I was experiencing shortness of breath when walking up stairs. I had also been getting an upset stomach and losing weight.

Having CML was described by the doctors as similar to a long-term chronic illness, like diabetes. But they also mentioned that there were treatment options such as a bone marrow transplant if oral medication did not control the disease. I was told that was very rare for a woman my age to develop CML as it mainly appears in men over 50.

I started a short course of Hydroxyurea before the long-term treatment of Glivec was started. Glivec (Imatinib) is a tyrosine kinase inhibitor (TKI). It stops the tyrosine kinase enzyme that causes the abnormality in the bone marrow that leads to the mass production of immature white blood cells. Glivec is very much the first in a new type of targeted therapy and many new treatments for other cancers are aiming to follow its design.

When I started Glivec, I often felt sick after taking it and I had re-adjust my meals. I had to have large bowls of pasta in the evening just to keep the tablets down, and if I drank cola or tea it would come straight back up. I started to gain weight and went from size 10 to size 14 within a couple of months but I didn’t feel like exercising as the Glivec also caused bone pain.

Telling family and friends about my diagnosis was difficult. My daughter was too young to understand, although she knew that I wasn’t well. Telling my dad was particularly hard as he lives in New Zealand so the distance seemed even greater, especially as we both just wanted to be able to give each other a hug. Some of my friends thought I was being selfish when I wasn’t able to socialise as much as I had done and some friendships have not lasted the distance. My most important relationship, however, has lasted and that’s with my husband Kevin.

Six months after my diagnosis I started feeling very tired. I also had sudden urges for food like donuts and noticed that smells were becoming stronger. I did a pregnancy test that was positive but when I informed the hospital they told me that having the baby would be a gamble; there hadn’t been many successful pregnancies on Glivec anywhere in the world.

We decided to chance it, and it was agreed that I would come off treatment to give my baby the best chance of survival. Everything ran quite smoothly until 23 weeks into the pregnancy. My white cell count started to rise and I was advised to restart treatment, but the lack of information on Glivec and pregnancy was stressful. We didn’t know how safe the drug was for the baby and we worried that the baby’s brain development could be affected. With so little information go on, I spent an agonising week wondering what to do, and what would be best. I eventually restarted Glivec and, six weeks before my due date, I went into spontaneous labour. Our healthy son, Matthew, was only the fourth baby born worldwide on Glivec.

Following Matthew’s birth, Glivec started to impact negatively on my life. I ballooned from a size 14 to size 22, and I found walking hard. I had drenching night sweats, joint pain, heartburn, itchy skin and felt really down. Eventually it was decided that I could try a different drug called Tasigna. Tasigna is taken on an empty stomach, so I was able to cut the heavy meal at night and, as the weight dropped off, I found getting around a lot easier.

Ten years on from my diagnosis, I am far from as fit as I used to be but I am a lot happier with myself than I was. Having lost 70lbs (five stone), I am now about a size 14. The night sweats still happen but they are not as bad. I still have days where I suffer with fatigue and joint pain and it’s known that the long-term use of TKIs can cause heart damage and diabetes. I try to watch what I eat and do some exercise when I can.

I often wonder what the future will hold for me. CML has changed my life drastically; I gave up on my dream of being a gym instructor and I often feel lost about what to do once my kids are older. I have four-monthly blood tests to check that the Tasigna is still working and, so far, I am in “molecular remission”, meaning that CML cells are undetectable in my blood tests. The only cure for CML is a bone marrow transplant, which is a high-risk procedure. On bad days, I often wish I could be cured so I don’t have to think about managing this illness for the rest of my life. On other days, though, I know I am lucky to be alive.

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.

Life. But not as you knew it.

At Shine, we know that life after a cancer diagnosis is never quite the same as it was before.  As the only charity in the UK exclusively focused on supporting people in their 20s, 30s and 40s who are living with cancer, we want to make sure that no one in this age group feels alone – and we think it’s important that the experiences of younger adults with cancer are reflected through the work we do.

Our new blog series Life – But Not As You Knew It aims to do exactly that.  Over the coming months we’ll be highlighting some of the issues that uniquely affect younger adults.  In our first blog below, Christopher talks about living with a chronic form of leukaemia that usually affects people in their 70s. Part exploration of life on ‘watch & wait’, part letter of complaint, we are sure that you’ll be able to relate to some (or all!) of the issues he touches on.

If you’re interested in blogging for us, we would love to hear from you!  Drop us a line at info@shinecancersupport.co.uk and we’ll get in touch.

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Watching and Waiting

Guest blogger: Christopher Riley

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It has been a long time since I have written anything with the exception of letters of complaint (which I am now somewhat an expert at); hence, this will probably seem like one long complaint and in some ways I think it is.

I am not going to write so much about my experience of having a cancer diagnosis but more about what it is like to be on ‘watch and wait’ (W&W) and living with an invisible illness.

I was diagnosed with Chronic Lymphocytic Leukaemia (CLL) in late 2008 at the age of 40. For the first 2 years I was monitored closely to see what stage the disease was at and how quickly it was progressing. As the disease is relatively stable I am on what is called ‘watch and wait’.

Blood cancers are complex, so in a nutshell there are three factors that could mean the commencement of treatment: change to blood counts; lymph nodes becoming too enlarged; and/or repeated infection impacting on the quality of life. These are basically what the hospital is ‘watching and waiting’ for.

Treatment for CLL is initially chemotherapy, which can put the disease into remission for up to 5 years.  But it will keep returning until eventually one becomes immune to the chemotherapy.  After about three attempts of chemotherapy a bone marrow transplant may be considered. This is the closest you can get to a cure, but of course it is a hazardous procedure.  CLL is treatable but not curable.

The median age for someone to be diagnosed with CLL is 71 and they would usually die of another cause, such as a heart attack, instead of CLL. Because I was diagnosed at a younger age the statistics do not really apply to me, which creates a lot of uncertainty for the future (although I don’t like talking this way as I have had responses such as ‘ none of us know what the future holds’ or ‘we are all going to die some day’!).

The experience of W&W is a strange one that many people do not really understand.  They hear the word cancer and expect you to be treated immediately, which can cause confusion.  People either assume that I have been treated or that I have been cured.  Even if I did have treatment, with the type of chemotherapy I would receive there would be no visible signs (i.e. hair loss), giving the illusion that all is well.

I have found being on W&W the hardest part of my illness and weirdly not so much because of the anxiety of what may come, but because of how people react.  Their excuses (because that is what I think they are) to the situation generally fall into two camps.  On the positive side, there are those who use denial or deflection as a way of trying to alleviate any of my concerns. They think I do not want to talk about it, they find it confusing, or they can’t cope with talking about it.  On the negative side, there are those who are too self-absorbed, do not want to face their own mortality or just do not ‘do’ illness/hospitals. I have experienced friends saying things like “I thought that had gone away” and I had another friend emphatically state that I am living with a “condition” and not a disease!

I have tried tackling some of these issues head-on and giving people the green light that I would like to talk about what is going on. But I’m often then left looking at blank faces and have to endure an awkward silence.  I was talking to one friend who had asked how I was doing and whether I had any appointments coming up.  While I was explaining what was going on, someone else chipped in and cut me off by saying “but everything is ok isn’t it?” to which I could only reply “well yes….”. It was like being told to shut up on the subject, as it was old news, leaving me silenced and not wanting to talk about it anymore.

Every time I have an infection it is always dismissed by “there is a lot of that going around”, “everyone has had difficulty shaking that off” and, the worst, “I have had a terrible cold too”. Inside my head I am screaming BUT THEY DON’T HAVE LEUKAEMIA.  I was never an ill person before getting CLL, so I know this is due to my immune system being compromised and also that it is slowly getting worse.

One of the symptoms I currently have is extreme fatigue. I will be awake for an hour, walk to the high street, stop for coffee and think, “I am so exhausted I am going to pass out.” Most people’s response is, “that is age” or “tell me about it, I have two young kids”.  Do not get me wrong I know those are tiring things but this is DIFFERENT.  It is different in the sense that it is a constant and, whilst a nap may slightly alleviate the problem, it does not completely go away.

I realise I am extremely lucky not to have gone through gruelling treatment and that I have been fortunate to have been able to process my diagnosis without being thrown into that world straightaway. Although I am generalising about people, I am talking about a majority, including family and friends that are close. Even people from the “cancer world” can stare a little blankly at times.

There have, of course, been some wonderful people along the way but I suppose what I am asking is for some understanding that – despite the fact I usually look well – living with CLL is a mental and emotional challenge for me at times.  I do not expect people to solve the problem but it would be good to talk about what is going on and for people to just to listen and show a little empathy and concern.

The bottom line is that whichever way you want to look at it, the reactions of a lot of people make me feel lonely and isolated, denying me my thoughts and feelings relating to the disease. For me, it is difficult living with an invisible illness as most people assume I am healthy or even cured.