The Big C - the journey towards the rainbow

All that Matters

by Sir Chris Hoy

I wrote about Sir Chris Hoy at the end of last year and the news of his terminal cancer diagnosis. The news was a shock to all but his closest friends and relatives. Although it had been made public that he had cancer, Sir Chris had taken time to come to terms with his terminal diagnosis before deciding to go public and hopefully spread a very important message, that life was for living even in the face of the news he had received.

I was keen to buy his book ‘All that Matters’ after listening to various interviews and podcasts as I was so taken with his positivity and his determination to live life to the full and not sink into a depression. He made it sound so easy but the book shows it has been anything but.  He too has sunk at times into dark moods, he has struggled to motivate himself and to look to the future and he has shown through his writing that he has undergone every emotion that anybody given a cancer diagnosis, particularly a terminal one, goes through.  He is human, just like the rest of us. The difference is that he has turned his worry and fearfulness around to embrace the life he has and to ensure that he sees joy in each and every day that he remains on this earth. That is not easy.

The book was not quite what I was expecting as I assumed it would be purely about his diagnosis and treatment but in fact it focusses very much on his rise to glory at the 2012 London Olympics, the people he met, the friendships he made and those that worked behind the scenes to help him become a 6 time Olympic world medallist. Many of these friends and colleagues were to subsequently help him deal with his terminal diagnosis and continue to offer support now. Hoy makes it clear how life can change with the blink of an eye – going from wonderful, easy and happy to something that is terrifying.

We learn all about how Chris built his career and what happened after he retired and had to create a new focus for himself. We learn how his wife was and still is an incredible support despite the news that she was suffering from a life changing illness herself and we learn about the importance of those closest to us who can help us through the darkest times.

But ultimately, what shines from this book is hope!  Chris is dealing with the latest phase of his life in an extraordinarily brave way.  He sees it as a challenge that he cannot overcome but he can live with and he is determined that with his wife and family by his side, he can continue to enjoy life and make the most of it for a long time yet, despite the diagnosis. We read about how Chris focusses on the important things: the moments that matter, the happiness and joy that can always be found if we look hard enough and his desire that we too can feel the same way if we find ourselves in similar circumstances.

It is a very personal book as Chris details his thoughts and feelings even at his most darkest times but we see how he has turned the profound despair he felt when originally told the news, to hope. We cannot change a cancer diagnosis but we can learn to live with it and with support we can still enjoy life. Chris says: ‘I choose to face it, acknowledge and recognise it… I can choose how I approach each day.’ In his words, he chooses to focus on the present, what is happening at that particular moment without looking too far into the future.

Every day is important, every single day matters and we all have the ability to adapt to what life throws at us is Chris' philosophy.  Chris is not saying it will be easy.  He knows full well that when we are hit with a diagnosis we are not prepared in any shape or form to what will happen, how we will be treated or what the outcome will be and he knows full well that once you have had a diagnosis your life changes forever, even if treatment/surgery is successful. It scrambles with your head, your thoughts and ultimately how you approach life, long after treatment is over and done with. But he is very much of the belief that we all have inner strength that we might not be aware of and we all have the means to cope.

If you are interested in learning more about the mindset of a sportsman who got to the top of his game and then retired at a still relatively young age, how he prepared for and was affected by Olympic success, how he had to find a new life once his cycling career was over and now how he is continuing with his sports commentary and his other interests whilst dealing with terminal cancer, then you should find this book of interest.

On a recent visit to Edinburgh, I found a square with golden handprints. These belonged to well known Scottish people and amongst them were those belonging to Sir Chris Hoy. Having seen his career, listened to his post diagnosis interviews and read his book, I had to put my hands within his and hope that some of his optimism, his desire to make the best of his life, to achieve, to overcome and to have hope, would rub off on me too. I was one of the lucky ones. My cancer was dealt with.  It was not terminal.  And within another year or so I will be declared cancer free, but I still have my dark days when I worry about it returning, about never feeling 100% again, about someone else close to me getting their own diagnosis and I find it difficult. Cancer messes with your mind. It makes you fret and worry when you wouldn’t have before.  It makes you think, what if?  It makes you think of things you really don’t want to be thinking of. Sir Chris Hoy, by writing this book, has tried to reassure and encourage anyone who has had a cancer diagnosis to live, to hope, to enjoy life and to thrive.

To all those struggling with their own diagnosis, treatment and prognosis, have faith.  Even in the darkest days there is joy to be found, we just might have to look incredibly hard to find it.  But it is there.  Grab each moment of happiness and keep it close.  Sending hugs to all those who need one.

Should I be exercising during my cancer treatment?

Generally, it is thought that exercise is safe during and after treatment and has many benefits. It can improve your quality of life, reduce anxiety and depression, perhaps reduce fatigue symptoms, prevent or improve lymphoedema and improve your general wellbeing. After surgery, advice is often to get up and move around as soon as possible, to help prevent further problems occurring. This does not mean starting marathon running or weight lifting however! Gentle slow exercise, even just moving around the ward can help to speed up recovery time and make you feel better about yourself, but start small with achievable goals. Take into account your previous fitness levels, your diagnosis and any factors specific to you before deciding what to try to ensure your safety.

Starting small might mean taking a short walk which you build up gradually one day at a time. After my surgery my first challenge was to walk to the bathroom on my own! I then progressed to moving around the ward and down the corridor. Once home my challenge was to walk the 1km route around my village which was impossible at first. I began walking to the nearest bench and back again, increasing steadily and with support from family members until I felt comfortable doing the route on my own. Some days I was able to increase the distance, some days I just managed to match the previous days achievement – that doesn’t matter – some days you will have more or less energy and therefore it is important not to think the distance has to increase each day.  Some days, I couldn’t get up off the sofa and just needed to rest.

Targets should be built up slowly and at your own pace.  Those that were very fit before treatment/surgery, may find they can start at a much higher level but for the majority just staying active rather than specific exercise, can be the way to go. Short stints of housework or gardening can be just as useful, with rests in between as and when needed. The important thing is to do things that you enjoy as this feeling is more likely to keep you going for longer, but also to not push yourself too hard. I was told that trying a little exercise every day was the best thing to do to gain both physical and mental health benefits.  Each ten minutes of movement adds up and can be built on and without the need to pay for gym membership!

Other free activities that can be just as beneficial include playing games with your children, household chores, washing the car, walking the dog or dancing to the radio. There are also numerous online classes that you could try ranging from seated yoga to salsa.  Check out the Look Good Feel Better website and the Virtual Village Hall for two examples, though many sessions can be found on Youtube etc.  Even walking up and down the stairs a couple of times can be excellent exercise for building up stamina and strength.

Gentle exercise has been proven to be safe, possible and helpful for those with a cancer diagnosis, an added benefit being better sleep quality which is beneficial for healing. Exercise may also help manage side effects such as pain, nausea and fatigue, helping your body to respond better to the effects of your treatment.

There are certain types of exercise that are not advisable for specific cancers so consulting your oncologist is very important.  Those with low immune systems should avoid crowded gyms and swimming pools as the risk of infection is high. Bone cancer patients should avoid strains and stress as they are more at risk of breaks and fractures and would benefit more from a weight bearing activity such as swimming or aqua Zumba.  Those suffering from peripheral neuropathy (pins and needles) would be safer using stationary equipment eg bikes rather than doing a weight bearing activity.

Finding the right exercise and the right level for you is the best thing you can do to speed up your recovery time and begin to feel more ‘normal’ again but it is vital that you do not start too soon or push yourself too hard. If you have had surgery, please wait until you are fully healed and seek advice from your oncologist first. The last thing you want to do, is overdo things, push yourself too hard and set your recovery back. But otherwise, go for it! Set yourself a simple target and work at it, little and often.  The benefits to your general wellbeing and your sense of achievement cannot be under estimated and anything that makes you feel better about yourself and your situation has got to be worth a go.

 Tips:

Consult your doctors before starting any exercise.

Start small and build up slowly. If walking to the bathroom is the most that you can do, then that is fine!

Listen to your body. If it is saying stop, then stop! Rest as and when you need to.

Don’t beat yourself up if you don’t match or beat the previous days achievements.  Some days will be better than others.

Don’t exercise if you are feeling unwell.

Wear comfortable clothes and trainers

Be proud of what you achieve, however small.  You are doing great and each little step is another step towards recovery.

No Number Notification

How does it make you feel?

Unknown numbers ringing my phone had never really bothered me. I usually just ignored them – my theory being, if it is someone important, they will ring back. Usually, it is a scam call or a cold call which I would rather not answer anyway. I get several a week and I never, ever answer. They are highly irritating, highly annoying and just a plain nuisance.

But when I was first poorly and awaiting diagnosis, I began to realise that unknown calls, or no number notifications took on a completely new meaning - a meaning that would make me shake with nerves and that I struggled to deal with. I was at the Bowes Museum when I had my first persistent no number notification calls. I’d been having tests and awaiting results but had assumed they would arrive by post as most things did. My trip to the Bowes Museum, was a rare day out. I was feeling less poorly than usual; a friend had offered to drive and we had arranged an interesting and fun day out. The calls started during lunch. We were in a very busy cafeteria and it was incredibly noisy but somehow, I heard my mobile ring. Looking at the screen and seeing that it was a no number notification, I cancelled the call as normal and put it away. Within seconds it rang again and this pattern was repeated several times.

Eventually and feeling very frustrated, I decided that I would need to answer and tell the caller to leave me alone, so I left the restaurant and found a quiet corner. ‘It’s the oncology department,’ the caller said, ‘Where are you?’ I explained where I was and asked why and was told, ‘The consultant and the nurses are here waiting for you, you had an appointment with us today.’ I had never received notification of an appointment and had absolutely no idea. My appointment was swiftly rescheduled though at that time I had no idea what it was about.

It was then I realised that No Number Notification calls would become a significant part of my life whether I wanted them to or not.  All calls from the doctor’s and the hospital came this way, there was never a number that I could call back. I dreaded seeing them because it would mean another visit, another test, another procedure or results that I was scared to hear. It became a big part of my life, just like the brown envelopes that landed on the doormat with private and personal written on them – more information from the hospital, more appointments, more blood tests.

Each time I saw the no number message or the brown envelope, my heart would start racing, the anxiety would build and I would have to force myself to either answer or open and read it to find out what was next. It was tough and often I would think, just ignore it though I knew that I couldn’t.

It is a fact of life that these calls and letters will cause anxiety for most people. But being prepared and accepting that this is what is going to happen for a short period in your life will ease the worry and fear. These calls are necessary and the quickest way to get hold of you or to pass on relevant information. And of course, they are not always bad news even though it might seem it at times ! Sometimes the consultant would ring me to say that my blood tests were good, my iron levels were up, my x rays were clear etc. They wanted me to know quickly to put my mind at ease and stop me from worrying, knowing that these snippets of good news would help bolster my confidence and help me through the less good times.

So, my hints and tips this month are:

Be prepared for no number notifications and do not panic. Recognise that they are from your oncologist/hospital with important information for you.

Answer them! Delays can mean missed appointments which you do not want.

Keep calm.  It does not necessarily mean bad news.  It is just a means of passing on information that you need.

Take a deep breath before answering or before opening the envelope to calm your nerves.

Ask for information to be repeated if you are unsure what has been said or are too anxious to take it in first time.

Remember it is for a short period of time only and then you will probably be back to those annoying scam calls that you CAN ignore!!

Be brave, have faith and believe. You can cope with these calls and move onwards and upwards.

Would a holistic approach to dealing with cancer be helpful?

I was reading an article recently on the importance of holistic care when dealing with a cancer diagnosis and treatment.  Writing in the ‘Daily Express’, Robert Fisk says that the NHS believes that all patients should undergo an assessment on holistic needs when they are first diagnosed. This would mean listening to a patient’s worries, however trivial they might seem, and spending time answering them ie using the answers a patient gives to form a personal care plan dealing with the individual and their personal worries.

Talking to other people who have been through cancer, I found that there were many worries we all had in common, but also many worries that were particular to individuals. Most people are worried they might die, lose their hair, be so ill they can’t perform their job properly and so on.  Others are more concerned about the financial impact, losing their jobs and being able to afford basic needs such as heating. These worries on top of dealing with surgery and treatment can have significant effects on wellbeing and recovery.

Treating each patient as an individual would be amazing but clearly doesn’t happen.  There are too many patients, too few practitioners and not enough time. I recall filling in a holistic questionnaire at the beginning of my journey: endless questions about how I was feeling, what I was able to do, what I couldn’t do etc but apart from repeating this at intervals since completing treatment, none of the information taken was used to improve my wellbeing, it was purely to collect data and was all anonymous.  

Speaking from experience, I had endless concerns and these did not stop when treatment finished. Even a few years down the line, I worry or am anxious and I have few places to turn. There are helplines, there is counselling but generally there is a long waiting time – issues are not dealt with immediately and this can be incredibly detrimental to a person’s wellbeing and recovery.

The hospital I was treated at were brilliant at dealing with the physical effects of cancer but didn’t have time to talk me through all the worries I had, so mentally, I have had to work things out on my own. It isn’t easy. If you meet someone who has been through something similar that can be a great help as they will recognise and understand what you are going through and the fears you have, but this means being very open with people which is not always easy to do.

Doctors quite rightly have to focus on the medical evidence they have in order to treat the physical symptoms of cancer. They need to work out what blood results are pointing to, whether the body is physically able to cope with the demands of chemotherapy and whether the facilities are there to provide it. They just don’t have time to ask how a patient is, what their worries might be and all the other little niggles that may present themselves.  Patients are very often asked what side effects they are experiencing so that medication can be tweaked but rarely are mental health questions asked at the same time, other than how are you today?  But if there was time, and these questions were asked, would this not mean issues affecting recovery could be recognised and dealt with efficiently?  Would this not mean patients could be referred for help or to support groups  more quickly? Fisk also suggests more importantly,  that this would mean patients being treated as people, rather than a list of results on their computer.

A cancer diagnosis is a life shattering experience. It is a tremendous shock both physically and mentally and requires an inner strength to deal with it. Having someone ask relevant questions early on could mean dealing with it far more successfully and avoid patients plunging into depression and despair. The Daily Express is launching a campaign to help ensure more mental health support is available for those with a cancer diagnosis believing that a holistic approach could make a massive difference in improving the wellbeing of those experiencing cancer and their loved ones around them.

In the meantime, my advice to anyone who is finding dealing with their cancer diagnosis difficult, is seek out whatever help you can. 

·       Find your local cancer centre, a cancer support group or go online and check out MacMillan or any other forums you can find.

·       Ask your oncologist and the staff at your treatment centre, all the questions you need to. If they cannot answer them, perhaps they can direct you to someone who can.

·       Write down your worries, leave them for a day or two and then study them again. Are they really important issues or was it panic setting in?

·       Talk to family and friends. Explain how you are feeling so that they can support you.

·       Read books written by cancer survivors if you feel able to. Many of them will have experienced the exact same worries and can offer valuable advice or at least understanding. Knowing that someone else has felt the same way can be extremely reassuring.

·       Take time for yourself. Look for ways to rest, relax and recover.

Wishing you all well in your individual journeys. We are all different, our cancers are different and our treatment is different, but deep down we all have our concerns, fears and worries. Keep taking it one day at a time and have faith that things will get better.