The Big C - 2023

Looking to the future

When you are hit with a cancer diagnosis, looking to the future is rather scary. So many questions whizz through your head.  Will I die? Will I lose my hair? Have they caught it in time? Do I actually have a future?  The questions are many and varied and can range from something as simple as how will I feel in the morning to will I be here for Christmas? Often it is easier and ‘safer’ not to look to the future and to cope with each day at a time.

When I was first told I had cancer, something I truly never ever thought would happen to me (not sure why!) the future was daunting. I had no idea how big my tumour was, how dangerous it was, whether it could be removed, whether I would need chemotherapy and so on. There were too many questions and it was terrifying to think about what lay ahead. It was difficult to not think about the bigger picture and let those fears invade my mind but it became easier when I finally started my treatment. At first I was focussed on dealing with major surgery and recovery from that, then rebuilding strength and stamina ready for the next stage. Then it became all about dealing with each session of chemotherapy and the after effects and it was easier to literally focus on one day at a time. A bad day was endured and then written off. A good day gave hope. I stopped looking too far ahead and moved from dealing with one chemo session to the next.

And then the day comes when you are told that treatment is finished. You can go home and look to the future. And then it hits you. Your support network is being tuned down. You no longer have three weekly checkups and opportunities to allay fears. It is time to look to the future and make plans.

I found this quite difficult to start with as I was scared to look too far ahead. I had become so used to dealing with one day at a time that the thought of looking to the following week, month or even year was daunting and it was a process I almost had to relearn. I took it slowly, beginning with planning something to look forward to the following week. It may have just been a coffee with a friend or a trip to a garden centre but after months of not being able to do a great deal other than attend appointments, these were huge milestones and gave me something to look forward to, something I feel is very important. And then it was planning things for the following month – a trip to the seaside when the weather improved, a weekend break and so on.

It took me the best part of a year before I booked a holiday. It had been so long with Covid restrictions, feeling ill and then my treatment that I hadn’t been able to find the courage to look that far ahead without fearing that I would be unable to go or too ill. In the end I booked a 5 day Christmas market cruise, something I had been wanting to do for many years but felt was a bit of an extravagance. With my husband’s support, this was booked as a way to celebrate returning to being me and coming through everything that I had endured. When I allowed them to, the anticipation and the preparations became exciting and I began to feel that life was indeed returning to normal. Suddenly I felt hope that I would be 100% fit once again, that life was there for living and that I should seize every moment of happiness and opportunity that I could. It was completely different to the way I had been feeling for a very long time.

I now realise that although it is difficult to plan for the future when you are going through difficult times, it is essential. Small treats, visits with friends, outings can give hope and joy in tough times, helping you through the worst days and creating good memories that will hopefully outnumber the bad. It might be a tiny plan but it can make a huge difference to the way you feel about life and the future you have, whatever it holds.

In my current situation getting out and about is tough. Time is short and life is mundane. I work, I sleep, I travel to support others and then I start the same cycle again. I have learned that without small treats and outings planned, I can sink into a depression very easily and feel that there is no end to the trauma and the future is grim. Little treats to look forward to, however tired I am, are proving to me that there is a future and that although life is hard, there are good times too. My fabulous family are organising a monthly treat for my special birthday this year – 12 treats that I would never organise myself, as they feel it is important that I have time for me and to know that I am loved and appreciated. I cannot explain how wonderful that was and how overwhelmed I felt at the time. It is going to be difficult to fit them in and I might not manage to complete them in the timescale set, but I do have things to look forward to and to brighten the darkness.

Everyone needs to look to the future and to make sure that life is worth living. For those with an illness or cancer diagnosis, it might be particularly hard but I can assure you that having things to look forward to whether in the short term or long term (whatever suits you best) will help you on the road to recovery and give you a reason to smile. Go for it! Enjoy! You are most definitely worth it!

Tips

Don’t look too far ahead to begin with, start by planning something nice for the following day or for the end of the week

As you feel stronger, buy yourself a diary and start booking in visits to friends, shopping trips, the cinema etc in the following week

Build up to planning things the following month and then something special like a holiday for the following year. Don’t worry about the practicalities for now, just the idea

Allow yourself to live in the moment, enjoy every day but to look forwards also

Don’t feel guilty about putting yourself first and planning things that you want to do. You are worth it.

Be aware that although we might not manage to do everything we did prior to diagnosis, we can find other things to do that will be just as much fun and exciting

Remember that life is for living. Grab those opportunities. Say yes when you might originally have said no and make the most of being here.

Loss of confidence

Why me?  Why now? 

When I finished my cancer treatment, I suffered a severe lack of confidence in myself and my abilities, which took me by surprise. I had read that a lack of confidence often hit due to appearance changes: loss of hair, weight gain or changed body image, but since I hadn’t been affected by any of those, I was not expecting to have this problem. My lack of confidence showed itself mostly at work which was perhaps due to taking time when I needed to recover from my surgery and chemotherapy, but I am not sure. However, over time and as my health improved,  my confidence gradually improved too and after a few very emotional and upsetting months, I felt I was more or less back on an even keel.

Another year down the line and it has happened again! I am struggling to believe in myself and as a result am making unnecessary errors, suffering from indecision and feeling that I am not qualified anymore for the job that I do. It has hit without warning again, though my life is rather complicated at the moment and I have a lot on my mind which may be part of the cause. It seems that it doesn’t take much to trigger an attack. This week I was knocked for six after receiving a letter saying that I would not be having any medical checks for 12 months – no blood tests, no scans, no consultations. It should be a time of celebration – a year free of medical appointments is very welcome, but it has in fact had the opposite effect! I am feeling exceptionally vulnerable, underconfident and anxious. And these feelings are all making me unable to complete my job to the best of my abilities which is causing further anxiety – will I be in trouble? Will my duties be reduced? Will I be asked to leave?

I’ve been researching the issue and have found that undergoing cancer treatment can affect the way you feel about yourself quite significantly, making you feel less confident about who you are and what you can do. It is mildly reassuring for me, but not something that my employers know about.

Cancer is a life event over which we have no control, so it should not be a surprise that it can affect our self-confidence – we have no known ability to avoid cancer or manage the impact that it has on our health. When going through treatment, cancer patients accept the treatment on offer and get on with it.  It is a round of appointments, checks, blood tests and treatment which we accept because we have no control and we desperately want to eradicate the cancer and get better. Once it is over, life is different. We may not suddenly know how to control our lives again or how to keep the fear at bay.

A loss of self confidence can hit at any time and without warning. In my case this time it has hit because of a lack of support and reassurance which it would seem I still need. I have learned that it is important to acknowledge that my self confidence has taken a hit and that it is both common and normal. I have also learned that it can impact on practical, personal and emotional aspects of my life as well as the choices I am making and in my relationships with other people. But, unless they have been through it themselves, other people do not have this understanding and I feel that more awareness is needed, particularly with employers. For many of the people I know, there is a feeling that I have got through surgery, finished treatment and gone back to work – I should therefore be back to normal and getting on with my life. My close friends, have a more realistic understanding of my progress and are more able to cope and understand the ups and downs in daily life that I am experiencing.

 It is not unusual to recover from all the physical aspects of cancer treatment quite quickly, but the emotional state of mind and psychological recovery can take much longer. The time following the end of treatment is a time of change. Patients are no longer in survival mode but in moving forward mode and changes may have had to be made. It is a time to work out what is normal for you or what the new normal is, which may be very different. Going through cancer turns your world upside down and life is never the same again. It is no wonder that it can leave you feeling lost with no obvious sense of direction or purpose and with a different outlook on what you can and can’t do!

But there are ways of coping with this and improving your self-confidence and self-esteem.

Tips

Talk to people – friends, family, helplines, employers – help them to understand by explaining how you feel

Be open and honest about the way cancer has impacted and is still impacting on your life.

Build a strong support network by surrounding yourself with the family and friends that understand

Seek support from a help group if you need to, such as the MacMillan chat line/website

Set small achievable goals on a daily, weekly and monthly basis and acknowledge, celebrate and be proud of what you achieve however small

Think about the way you view yourself and focus on the best bits!

A lack of confidence in one’s own worth or abilities can be debilitating, so talk, talk, talk and help other people to understand and support you through your recovery. Recovery does not happen overnight; it is something that needs to take its own time and to be worked on, but we will get there. The biggest step to me is acknowledging that surviving cancer is something that will affect me for a very long time and perhaps for the rest of my life. It's legacy may affect me at any time without warning and I need to accept that, deal with it and continue to move forward.

I hope that you can too!

There’s no doubt about it, having cancer can be an isolating experience. There are times when you are not supposed to socialise as your immune system is low and times when you just feel rubbish and couldn’t socialise anyway as you are lacking energy, fast asleep or suffering from the effects of chemotherapy. When everyone else is busy with work or out having a good time, it can lead to feelings of extreme loneliness.  This is also exacerbated by the fact that however supportive your friends and family are (and they truly can be), they really don’t understand the full extent of the feelings that you are experiencing.  Nobody can truly understand unless they have been through it themselves.

My cancer diagnosis and treatment came at a time when the world was still in a pandemic lockdown which increased the feelings of isolation even more. There was no where for me to go, I had to be extra careful to avoid infection and the support system was non existent. I had some amazing friends who tested themselves for Covid before visiting, stayed well away when they had any kind of cold symptoms and continued to message me throughout, to help make me feel less isolated. They were wonderful and made life so much more bearable for me. As the world started opening up again, things became harder as my world was closing up even further. It was a tough time.

 I was aware of cancer centres throughout the country, but the one in York had closed its doors at the beginning of the pandemic and showed no signs of opening up again.  When things became more normal, I heard from friends about various centres, Maggie’s being a particularly well known one, who open their doors to those with or who have had cancer and sometimes their families. These centres can provide a valuable lifeline to those enduring treatment. Here, you can meet other people who are going through or have been through their own cancer journey. It is a safe place where you can discuss your symptoms, receive understanding and support, find company when you are feeling lonely and access  a variety of activities that will help you on your road to recovery. Each centre will offer different things and all rely on donations to keep going.

I have been lucky that two years on from the beginning of my journey, York has opened up a brand new centre called The Leveson Centre. It has been funded by charitable donations and  is a beautiful centre with a welcoming kitchen area, break out rooms and quiet corners where people can meet, chat, have a coffee and find support.  They are also setting up a variety of sessions aimed at making life more bearable, fun and helpful for cancer patients. These activities may be exercise sessions, complimentary therapies, advice sessions on coping with hair loss or breast cancer, support and information about returning to work or workshops organised by Look Good Feel Better. The Leveson Centre opens up once a week for a drop in coffee session too – nothing special, just a time when patients can gather and know they will find a welcoming space. And all of it is provided free of charge which is just amazing.

I have been lucky enough to access 6 sessions of Pilates – something I have never tried before and am really enjoying. The tutors are selected carefully to ensure they understand their clients needs and are supportive of the various issues their clients may be struggling with. I will also be attending a Make up session in December and hope to access 6 complimentary therapy sessions at some point in the future. Despite the time lapse since I began treatment, the Pilates sessions have ensured that I have an hour of relaxation and exercise, 1 hour of me time each week, something I now realise is so important to continue my recovery. I am very grateful that I have been encouraged to apply for these sessions despite the fact my treatment finished 18 months ago.

Some of my friends around the country have found their centres to be a lifeline – a place where they feel so comfortable they attend each week.  Here they have made new friends, tried new activities and relaxed fully. It’s not for everyone, but checking out your local cancer care centre could give you the opportunity to move forward and provide you with the added support you might need.

Some people  just want to forget that they have had cancer – to put it behind them, and that is absolutely fine. Others aren’t quite ready to forget or can’t forget and need that little bit more support and understanding. Others just want to know that there is something there – somewhere they can access as and when they need it.  From what I can gather, the cancer care centres can do all that.

There are thousands of people out there who work tirelessly to raise money to fund the centres and all the activities that they offer – they are incredible. Take a look at what yours has to offer - there may just be something that catches your eye and encourages you to give it a go.  Alternatively, raise some money or offer your own services by volunteering for your centre and help others deal with the impact of their diagnosis. After all, you will have a unique understanding of what they are going through and how they may be feeling.

Whatever you decide to do, give your local cancer centre your support and help keep them going for those who need everything they have to offer.

What can I do? What do I say?

The importance of being a good friend.

It is difficult to know sometimes what to say and what to do when someone you know has a cancer diagnosis. Many of us are frightened of saying the wrong thing, causing distress or being ignorant.  We want to help but don’t know what would be helpful. I’ve fallen into that category many times but having been through it myself, I now have a better idea! However, everyone is different and how you react to a very close friend or family member will be very different to somebody you just know in passing.

I was met with many different responses some of which were unbelievably kind and helpful and others which caused me considerable distress. There are no right or wrong answers but by telling you some of the things I experienced, maybe you can make up your own mind as to what would be most acceptable.

When I got my cancer diagnosis I was in shock and I told very few people – my family, one or two close friends and a club I was in as I was due to attend a meeting and would no longer be able to attend. I had forgotten though, how village jungle drums work and although I had told maybe a handful of people, the news spread quickly. I was overwhelmed with people messaging or stopping me in the street to say how sorry they were. Although meant kindly, I found this difficult to deal with though later I was relieved not to have to explain things over and over again – so a mixed blessing!

There were several things that did annoy me.

  One – being told over and over again that I would lose my hair. I’m not particularly vain, I don’t spend hours styling my hair and I’ve had the same style for more years than I care to remember but the thought of losing it was terrifying. Over and over and over I was told you will lose your hair, you will have to shave your head, you’ll have to get a wig and so on. As it happens not every type of chemotherapy causes hair loss but this was the question, I asked several times pre appointments and this was surprisingly the thing I needed most reassurance about. At that point, surgery, chemotherapy, feeling ill etc were not significant, losing my hair was and people going on about it caused me endless anxiety and sleepless nights.

Two – what’s your prognosis?  People were basically asking me was I going to die? I didn’t know!  I didn’t know how serious my diagnosis was, what the long-term effects were, whether it would kill me or not and it wasn’t something I particularly wanted to think about. As far as I was concerned, I was taking things one day at a time and not looking too far ahead. It was only by doing that, that I could cope with the madness around me. I didn’t want to be fearful for my future, I just wanted to put my faith in the professionals and get through it.

Three –I know somebody who went through that and they are fine so you will be too. No two cases are the same. Nobody goes through exactly the same symptoms, surgery, recovery etc. I didn’t really want to know about anybody else because I was focused purely on myself at that point (not selfish, necessary) but also, I knew that it wasn’t something I could be blasé about it. I couldn’t think oh if they were fine, I will be too. I didn’t know what they would find on opening me up. I didn’t know if I needed chemo. I didn’t know what side effects I would suffer if I did.

Four – How are you feeling? And you look well!  Both statements were meant with kindness but could be irritating. I often looked well and felt dreadful! And trying to explain how you are feeling is so difficult at times, you generally just say I’m fine which is quickly accepted. In the end I tended to say It is a good day or a not so good day which people seemed to accept and cope with better. I did get fed up of talking about my illness though and would rather have enjoyed a different conversation that stopped me thinking about cancer and its various issues.

I was surrounded by the most lovely and generous people. I received many cards, messages, e mails and letters. Thankfully in the early days, there weren’t many phone calls or video calls as I just didn’t feel up to them but what was so lovely is that messages were sent but if I couldn’t reply it didn’t matter. People just wanted me to know that they were thinking of me and willing me on – that is powerful and means so much.

My house looked like a florist there were so many beautiful arrangements. I loved them all. I was inundated but they made me feel special.

I had gifts of books, home made cakes, biscuits, luxury chocolates, handmade trinkets – the list was long. People were so generous and thoughtful and every single thing was appreciated.

Just as appreciated were those who came for short visits when I felt up to it. Who sat in the garden with me just chatting about every day stuff, who gave up their lunchbreaks to spend some time with me and who took me out when I was unable to drive or walk very far. We didn’t have to do anything lavish but getting out particularly after the pandemic was a huge boost to my well-being. People didn’t have to spend money for me to appreciate them, donating their time was just as valuable and provided me with much needed company.

Those that continued to check in months afterwards when I had finished treatment but was still finding things hard were also hugely appreciated. Sadly, things do not miraculously go back to normal once treatment is over and side effects and mental effects can go on for a considerable time. Checking in every now and again shows how much you care.

Some people offered to do jobs for me. It was difficult if they asked can I help?  I could never really think of things to say to that, but when they said I’m going shopping, can I get you anything? It was much easier to answer. I’m mowing my lawn, can I do yours for you?  I’ve got the washing machine on, can I do a load for you? Any little tasks like that can make a huge difference between getting by and coping and help to relieve worries that you are not able to do the usual daily tasks.

But in general, I would say don’t worry too much. Your friend is still your friend, they just have cancer as well! They still want to know what the daily happenings are, the office gossip, the run of the mill stuff. They know that you mean well and as long as you take time to think before speaking so that you don’t say anything truly upsetting, you will be forgiven. 

Tips

Avoid talk of hair loss unless they bring it up.

Don’t talk of doom and gloom all the time, try to lighten the mood with fun and interesting conversations.

Don’t compare your friend’s illness to someone else and assure them they will be fine. They probably will be but sometimes they just don’t know that or believe it at the time.

Be there for your friend. Offer a comforting shoulder, support when needed, a listening ear.

Be clear on what you can offer to do rather than asking if there is anything you can do for them. If they are like me, they won’t like asking for help but if something specific is offered, it is sometimes easier to accept.

Write a note or letter or a card with a funny picture on it. It doesn’t have to say much but a few words can mean a great deal.

Don’t put pressure on your friend to ring you or facetime you. They may not be feeling their best or look their best. They may not feel comfortable with the way they are looking.  Take the lead from them.

Most importantly continue to be you! Be there and listen and remain the true friend that you are.  No gifts are necessary, no platitudes, no promises – just your presence, your support and your understanding at this truly difficult time are important. And if you stick by your friend, then you can’t really go wrong!

Worrying about stuff? 

Don't beat yourself up about it, it’s perfectly normal!

We all worry.  It’s only natural. They could be simple worries such as: Have I got enough milk for tomorrow’s breakfast?  Will the hairdresser be able to fit me in?  Did I lock the door when I left the house this morning?  I don’t know anyone that doesn’t have worries such as these.  But after having cancer, I have found there is another kind of worry, a worry that you can mostly keep under control, but at other times threatens to consume you. This is a worry that can be difficult to contain, difficult to overcome and difficult to deal with.

I never used to worry if I had a niggle or a pain. In my case, I would choose to ignore it in the hopes that it would go away, and invariably it did after a few days. If it continued, then I might consider seeking help, but it was unlikely. But after my cancer diagnosis this changed.  During surgery and treatment, I did have some worries, but in general I just went with it. I coped by listening, doing what I was told and basically just getting on with everything I needed to, but now, two years on I do find it hard to ignore those niggles.

I’ve been suffering from backache recently. It has gone on for quite some time and as each week has passed, my worry has increased. In the back of my mind, I worry that the cancer has returned, spread itself into a different area of my body and is growing. This is perfectly normal.  Many people who have had cancer think like this, it is absolutely natural to have that worry. In some cases, the scenario could be true, secondary cancer is detected and more treatment follows, but in the majority of cases, like mine, it is purely in the mind. If I am logical, I know that it is not cancer. I went to the gym a few weeks ago and used a weighted skipping rope for the first time in many years. The likelihood is that I overdid it in my enthusiasm, that I pulled a muscle or strained my back because it is not an exercise that I am used to. If I am logical, I know that the results of my second year scan came back recently and although they don’t say you are cancer free, I was told ‘ … there is no evidence of recurring disease.’  If I am logical, I know that the scan was from my neck down and if there WAS any cancer in my back, it would have shown up. But to be logical, I have to be calm, think sensibly and go through all the evidence.  When you are fearful, that is hard to do.

I am a firm believer, that once you have been touched by cancer, although it is possible to push it to the depths of your mind and not think about it daily, the fear remains and every now and again, it rears its ugly head. I work hard to push it away and to think positively, but when you are feeling weak and vulnerable, that is increasingly hard to do.

I have learned to listen to my body. If it is tired, I try to rest. If there is a pain I try to focus and decide whether it is a pain that will ease with pain killers or needs investigating.  If I have a niggle or an ache, I try to think what I have been doing that might have caused that to happen. It is a skill I am learning and developing. Sometimes I am successful, sometimes I am not. I keep my thoughts hidden which is not necessarily the best thing to do as it can grow and fester into something it is not. By sharing my fears with others, I could be reassured.

When I first started feeling unwell, it was in the middle of the pandemic and impossible to see a Doctor. I had to contact them numerous times before they would see me. Even then, getting them to listen and to take me seriously was hard work. I am not a person that visits the doctor for every ache and pain, when I do go, it is because I feel so unwell. To me, that should mean the Doctor takes me seriously and investigates all avenues. This did not happen. I had to push to be seen. I had to push to be listened to. I had to push to get them to look deeper when results came back normal. I know my body and I knew there was something very very wrong. I also had a friend who pushed me. She instinctively knew something was seriously wrong and kept going on at me to ring and then ring again until I was finally seen and investigations were made.

In the end I was seen by a doctor who was thorough. She did lots of tests and red flags were raised. She pushed for me to have further investigations and although my blood results were relatively normal (though not for iron), she pushed further and I was finally diagnosed.

I’ve still got backache but now I can see that it is likely to be from my gym attempts and perhaps I just need to take it easy for a little while. I am in a better place mentally so I can see things logically … until the next niggle hits. It might be that I will always be like this. It might be that when I am finally fully discharged (after 5 years of surveillance) that I stop worrying at the slightest thing, I really don’t know. But I do know that having those worries is perfectly normal and that if I can control those worries, I will be just fine.

Tips

Talk to people about your worries. They will be able to look objectively at them and provide reassurance or encouragement to visit a doctor for advice

Try to think logically and find a possible reason for your aches and pains. Have you done anything new? Have you overdone it?  Is it a new ache or a recurring one?

Trust your results and the investigations that you have. A scan is not just to see if your particular cancer has returned, it checks other parts of the body too and the likelihood is that if cancer has manifested somewhere else, it would be spotted and dealt with immediately.

Be persistent if something is wrong. Keep ringing the surgery to get a face-to-face appointment. Sometimes that is all that is needed to give the reassurance that there is nothing seriously wrong. But if you are convinced, then keep trying until someone takes you seriously.

You are the one that knows your body best. You are the one that will recognise if there is something wrong. Try to remain calm, but write down your concerns or symptoms so that you can pass them all onto the doctor.

Don’t worry about being worried! It is normal. It is part of the healing process. It is part of moving on.

Listen to your worries, acknowledge them, deal with them and then move on. Don’t let your worries take over and ruin your life.

Be strong, be kind to yourself, be brave. You are a warrior!

When I had finished my cancer treatment, I thought my life would return to normality instantly. The reality was, it didn’t!  I was hit by a huge wave of depression, anxiety, lack of confidence and extreme tiredness.

I had been so used to getting support from my oncology team, the fantastic nurses and the team at the centre I was being treated at, and then suddenly it disappeared. I was discharged and life was meant to restart. Like many others, I floundered, not knowing quite what to do to get back to normality and I realised that some guidance was needed. I was lucky that I was given access to a counsellor who I spoke to every few weeks but I needed something more.

Scouring the internet, I came across something called Cancer Coach and decided to investigate. Cancer Coach workshops are support groups for people who have finished their cancer treatment. They are free, run by trained facilitators and confidential. They are designed to help patients deal with the concerns and feelings of anxiety that so many face following the end of treatment and where there are no clear directions of where to go for help, helping patients to better understand and manage their own challenging emotions.

For many, it is the time after treatment has finished that is actually much harder to deal with. Friends and families can find this really difficult to understand. Chemo, radiotherapy, appointments, investigations, surgery etc are all over and done with and many of those on the outside can feel that it is time for you ‘to get over it and move on.’ This is much easier said than done when your body and your mind are still dealing with physical and mental changes,: a host of mixed emotions, a lack of confidence and constant anxiety that your cancer symptoms may return. Cancer survivors can feel very isolated, can suffer from low moods and can have great difficulty in dealing with what they have been through before finding a way to move forward.

The Cancer Coach Workshop aims to provide survivors with the tools to do just that – to move on and to regain control of life once more, to help build resilience, reduce feelings of isolation and improve self esteem. It is held over a 6 week period, with a weekly facilitated group session accessed online or via telephone. It is suitable for those over the age of 18,  with a stage 1 to 3 diagnosis, those with Stage 4 are recognised to need a different kind of support. Clients are put into small groups and sent a work booklet to read through during the sessions. Participants are taken through a series of strategies, techniques and exercises that aim to provide the tools, support and coping strategies to aid recovery. These might include how to handle negative thought patterns or overwhelming worries.

The groups are meant to put you with people in a similar position to enable you to share stories, offer encouragement, helpful tips and hints and create another support network.

To be honest, the course wasn’t quite what I expected or needed. When I joined I was actually in quite a good position both mentally and physically and looking forward to regaining my life. Some of the people I was grouped with were unfortunately not in the same place and I had to work hard not to be affected by their low mood, however, I did receive encouragement and support and we did celebrate people’s achievements. My favourite memory is when one lady felt brave and safe enough to remove her wig one evening and let us see how her hair was growing. That took incredible courage and we all cheered!  My group dwindled but a small number of us formed a Whats app group once the course was finished and we continue to offer support to each other which is rather nice. I would rather have been with a group of other bowel cancer survivors to gain the most benefit (my group mostly had gone through breast cancer) but I still gained from listening to some of their experiences. The advantage is that the whole thing takes place in the privacy of your own home and at a time convenient to you.

There are other places to get support, but at the time I was needing it most, we were still in the pandemic and access to cancer care centres etc was very limited, so this was a useful stop gap.

A course like this may not be what you need or desire, but it is worth checking out. It will cost you nothing but might just provide you with that little extra support to make life much easier for you.

If you would like to know more or enquire about joining a group, submit an application online and a member of Cancer Support UK will get in touch.

Brain fog

Brain fog is a weird thing.  It is very common during and after chemotherapy though not everyone suffers from it. I suppose it depends on the type of drugs you are given and how you generally deal with the trauma of diagnosis and subsequent treatment. It’s not just cancer of course that can cause brain fog - any trauma, illness, lack of sleep can be a cause and it can be very debilitating.

What is brain fog?  It’s different for different people, but in my case, it was the sheer inability to do the most basic things and to get my brain to focus. After my surgery, I came out of hospital and spent the next few weeks mainly sleeping. It’s possible that the heavy-duty painkillers I was taking were the main cause of that though I didn’t know it at the time. I’m a big reader but found that I couldn’t focus on a storyline and would be reading and re reading the same paragraph over and over again. There was no way I could maintain the storyline in my head. I also do word puzzles but again found that I couldn’t focus sufficiently to complete them correctly. I found it quite worrying.  Instead, I watched endless episodes of ‘Four in a bed,’ something trivial that I could enjoy but pick up again if I fell asleep mid programme without losing the thread of a plot!

During chemotherapy I actually did rather better, it hit me more once my treatment had finished. I found making decisions hard so it was best not to give me too many choices, thinking things through to a conclusion proved impossible and remembering stuff like how to use the gear box or a debit card took a great deal of thought. It is scary when that happens, when you realise that you can’t remember how to do something you have done for years. It wasn’t helped with life changing so much during the pandemic when we couldn’t drive a great deal and there was no need for cash, but it was definitely exacerbated by the chemo drugs that I was on.

However, there are ways to ease the fog and to get back to full memory capacity! Keeping calm, accepting support, working out a routine and making lists are all things that will help. Asking partners or family members to explain things, remind you of details or encourage you, is vital. By being honest with them, they will at least understand why you are having ‘dippy moments!’  Writing things down was vital to me as I could plan my day, remember all the stuff I felt that I needed to do and provide some structure, which meant my brain could cope better.

I started doing word puzzles again in spare moments, and although they were often left unfinished, I could see that I was making progress and finishing a puzzle successfully spurred me on to try more. This website was begun to ease my brain fog and to encourage my brain to focus for more than a few minutes at a time. I’ve managed to keep it going now for  18 months which I am proud of. It has certainly helped. Thinking of topics, writing the pieces, finding appropriate photographs, planning the layout etc all make me stop, think, focus and hopefully succeed.

I’ve read before about the ‘use it or lose it’ philosophy regarding general fitness, but I also feel this is incredibly accurate of the brain. If you don’t use your brain, it stops functioning and a long stay in hospital or recuperation or treatment can all make this happen. I’ve seen it recently with two family members who have had long stays in hospital.  One spent their day watching the medical staff, other people on the ward, looking at the newspaper, trying to do word puzzles, going for short walks up and down the ward and so on, the other did nothing except talk to their neighbour and ask them to do everything that was needed including talking to medical staff on their behalf. The difference on their return home is quite astonishing.  The one that tried to keep their brain active and take an interest in things is mentally alert, able to think through problems, remember where things are, recall their bank details and even describe the location of specific items inside and outside the house, despite the fact that they are now bedbound.  The other, who is mobile, has trouble coping with the simplest tasks, gets easily frazzled when confronted by issues such as a light bulb going out or a visitor turning up unannounced and cannot recall any instructions that are given.  It is very worrying. By not trying to keep their brains active they have caused a great many problems and a great deal of concern about their capacity to cope with normal independent life.

Brain fog is generally a temporary thing – a reaction to the medication, trauma or treatment you are undergoing, but it can improve and it can be got rid of if you are prepared to work at it. My brain fog hit with a vengeance when all my treatment was over. It took me completely by surprise as I assumed I would feel normal. But I can now say that I am more or less back to being me once again. I have the odd moment of forgetfulness when I can’t think of the correct word to use, or where am I going or what I went upstairs for! That could be as a result of my experiences, or it could just be an ageing, menopausal, blonde, ditsy moment!! We all have them. That is what I choose to believe now and we are all entitled to those moments every now and again.

So, if you are suffering from brain fog, general fuzziness or a feeling of life being out of control, have faith. It will get better and there are lots of things that you can do to get back to normal. Believe that you will get better, take steps to help your mind re focus and keep taking things one step at a time!

Tips

Explain to friends and family that you are struggling with brain fog and they will make allowances for you and support you. It may also provide you with some funny moments to laugh about together!

If you can no longer focus on reading novels, read a newspaper or a magazine – something you can dip in and out of and not have to recall a complicated plot.

Pick up that puzzle book and make your brain work.  Attempt a word search if you can’t manage a cross word, a dot to dot if sudoku is out of the question and build up to more complicated puzzles as you feel able to.

Make lists – lists of what you want to do, or the order in which to do it, ticking off as you go so that you know exactly what you have achieved and what still needs to be done.

Go easy on yourself and don’t try to do too much too soon. You’ve been through a lot and deserve a rest. Pick things up slowly and you will soon see a difference.

Set yourself a new challenge when you feel well enough and able enough. It’s always good to attempt something new and stretch yourself.

Watch some quiz shows and see if you can answer any of the questions. You will soon find that you are answering more and recalling information quicker than you were.

Take things one day at a time and try not to worry that your brain is not working quite as well as it used to. It will soon come back.

Be kind to yourself!

Goal setting

Moving forwards and back to normality

It is very tempting to instantly want something major but this can often lead to failure. Goal setting is a way of reaching the end target in smaller increments. It may take a while, but each small step, each little achievement can be celebrated and seen as a step  towards the end goal. With me, early targets were getting up, getting dressed, getting downstairs and sitting on the sofa. For a week or so that was all I could manage but it was an achievement. Then came trying to potter around the house, read a newspaper, walk to the village shop and so on. Walking to the shop took time – even that had to be broken down into manageable steps. At first it was walking there and getting a lift back. Then it was walking, having a rest on the village green bench and then walking back until finally I could do the whole thing in one go. It took time. It took patience. But I got there.

Other goals were set and achieved. Could I write a letter and take it to the post box? Could I do a load of washing and hang it on the line? Could I drive to the shops and buy the weekly food? Often just getting through the chemo session and aftermath was quite enough of a goal! Each goal took thought and planning but each one was achieved.

Pre diagnosis one of my achievements was completing the couch to 5km. It had been incredibly hard work but I had done it and was very proud of that fact. For 18 months during my treatment, I was unable to run. I hadn’t the ability or the energy but once I started to feel more myself again, I had a new goal. I wanted to run 5km again to prove that I had come through cancer and was back to being me again. This goal started last April and is ongoing. Had I immediately tried to run the 5km I would have been deeply disappointed, frustrated and probably would have given up, but again, I broke it down into smaller chunks. This began with walking increasing amounts, then walking and jogging for a minute or so at a time and then increasing the length of time I was jogging. It has been hard work. Some days I have really struggled and sometimes I wonder if I will ever achieve what I want to.

My initial aim was to run 5km which I achieved last month!  I am chuffed to bits by that. It has been a slog. There have been times when I have felt that I am not improving sufficiently but each time I tried took me one step closer to my goal. I have ended up reaching 5km quicker than I did originally! But that is not the end of my running goal. I will never complete it in a fast time, but pre diagnosis, I was able to run 5km in 40 minutes and reaching that once again will be a sure sign to me that I am back.  So, my goal setting continues. I am close but need to continue working at it,  so each time I go out, my goal is to reduce the time by a few seconds.  Fingers crossed I will get there soon.

I am trying to get my Mum to set her own goals. To think about what is achievable and the steps she needs to get there. It might be being able to get herself properly washed independently or prepare a meal, it might be getting to a shop and being able to choose her own food, it really doesn’t matter.  What she does need to remember though is to take her time, to not expect too much too soon and to take the time to celebrate each achievement and each step she takes towards her goal, however small and insignificant it might appear to be. Every step we take is a positive. Every step we take moves us forward.  Why shouldn’t we celebrate those achievements?

So, goal setting will continue for me and although I may not achieve all my goals, or perhaps not in the timescale that I want to, I hope that I can still think that I have done well and be happy with what I have done.

Know your poo!

Be a poo detective!

It’s kind of strange to think about now and I certainly didn’t notice anything at the time, but your poo changes when you have bowel cancer. If there is a tumour blocking part of your colon, poo has to become thinner and smaller to get through.  It might also be a different colour because of the presence of blood, a huge warning sign or it might smell a bit different.

Blood is one of the main signs of bowel cancer but it is important to remember that seeing blood does not mean that you definitely have cancer, there are other reasons such as polyps or haemorrhoids, but it is a sign that you should get yourself checked out just in case.

Checking your poo is so important because only then can you monitor any changes. If you have no idea what your ‘normal’ poo looks like, how can you possibly know if there is anything wrong? It also becomes quite fascinating, gross as that sounds, to see the various changes through diagnosis and treatment.  Taking iron tablets and going through chemotherapy causes huge changes in colour and consistency, having a bowel reconstruction also causes major changes. I now know that this is because poo doesn’t have as far to go and isn’t in your system for quite so long – who knew?!!

So I urge you to do it. Become a poo detective. Just check it every now and again.  Make a mental note of what it looks like and recognise any changes. These might be purely down to diet changes or medication, but they might just be the first signs that there is something more seriously wrong and then you can seek medical help and advice quickly.

The NHS has a bowel cancer screening test which is currently sent out to those aged from 60 to 74 years. This is a little testing kit that arrives in the post and that you can carry out yourself, the aim being to detect the presence of bowel cancer earlier before many symptoms present themselves. This programme is gradually expanding to all those over the age of 50. The test involves collecting a tiny sample of poo on a little stick – not delicate but not invasive – this is then sealed and returned to the labs for analysis. It is checked for minute amounts of blood. If the test finds anything unusual, you might be asked to go to the hospital for further tests to discount bowel cancer.

The main symptoms of bowel cancer:

The NHS says: “More than 90 per cent of people with bowel cancer have one of the following combinations of symptoms:

• a persistent change in bowel habit – pooing more often, with looser, runnier poos and sometimes abdominal pain

• blood in the poo without other symptoms of piles (haemorrhoids) – this makes it unlikely the cause is haemorrhoids

• abdominal pain, discomfort or bloating always brought on by eating – sometimes resulting in a reduction in the amount of food eaten and weight loss

 Tips:

Check your poo regularly so that you know what is ‘normal’ for you. This can help you to identify changes and possible concerns quickly.

If you notice any blood in your poo, remember there are a number of potential causes but contact your surgery for medical advice and to discount bowel cancer

Try not to panic.  The chances are it is not cancer but get it checked quickly so that if it IS cancer, you have caught it early and can deal with it.

Spread the word.  Encourage your family and friends to check their own poo!

If you receive a bowel cancer testing kit, then use it.  There are many people that are too embarrassed or can’t be bothered or don’t think it is important, but it is. Do the test, send it off and put your mind at rest.

Checking your poo, might just save your life so isn’t it worth doing every now and again?

Under surveillance

During treatment, particularly through chemotherapy, you are constantly seeing people: the doctor, the consultant, the cancer nurses, psychologists etc. Most people are on a 3 week programme so if there are any concerns or worries, you know that you will be seeing someone regularly that you can mention it to. They might not do anything but they can at least alleviate your worries. Once treatment has finished, that reassurance disappears and it isn’t always clear who you can turn to.  The five year surveillance programme goes someway to helping that and is designed to check up on you regularly, with blood tests, scans, procedures etc to ensure that the cancer has not returned. After 5 years, you are considered cancer free.

It seems a long time at the beginning, a long time before you can feel that you are cured of cancer and I do wonder if that fear ever fully goes.  At the end of my treatment, I was sent a 5 year plan which outlines what procedures would take place and when, over the next 5 years. As I first read it, my heart sank. I’d had enough of poking and prodding, but as I go through it year by year, I can see why it is necessary. Each time I am due to have something done, anxiety levels increase dramatically and gets worse as I wait for results, but each time I get a letter saying NAD – nothing abnormal detected, I can breathe freely once more. In my case, I have blood tests every 6 months and a scan each summer for about 3 years. I then get a year off until my 5th and final year when all tests and procedures will be repeated. This may change but that is the basic set up. Some years I get more things, some years I get less. I could worry about them but I try not to.  I am aware of when they are likely to take place (some delays do happen) but try not to think too much until the time comes around. This is because if I let them, the fear and anxiety could dominate my life and stop me from living the life I want to live.

It's not easy going through tests and procedures knowing that at any time, they could say the cancer is back but on the other hand, by checking you regularly, at least you know if it does, it will be caught very quickly and dealt with immediately. It is the next stage in the cancer journey, but hopefully the final one.

So, knowing that I am not actually being observed 24 hours a day (ie constant surveillance) but that I am being checked regularly is a comfort. I will still get anxious, I will still have sleepless nights, I will still worry before opening the brown envelope that I know contains my results, but I also know that the NHS is still doing the best it can for me, to make sure that I remain fit and well.  I am very grateful for that and believe myself to have been very lucky to have had the care that I have been shown.

Tips

Be aware of what checks you are going to have for your surveillance and make sure that you understand what they are and what they are for

Keep track of dates (but don’t obsess with them) so that you can chivvy the department if necessary or ask why a check has been delayed

Be brave and attend each check that you are offered. They are being done for your benefit and although it might make you anxious for a while, getting the all clear each time will spur you on and aid your recovery

Don’t be frightened to ask questions about what is happening or the way you are feeling. The medical staff will do all they can to help put you at ease.

Have courage! You can do this.  It is just the next step in your recovery.

You are so brave!

When people found out I was undergoing treatment for cancer and yet trying to carry on as normal whenever I was able to, many of them commented, ‘You are so brave’ or ‘I don’t think I would be as brave as you.’ Although it was very kind of them to say so, I did find it quite a strange thing to say because to me, bravery means doing something courageous, something potentially dangerous or putting yourself out to criticism or ridicule because of your beliefs. To that end, going through surgery and chemotherapy wasn’t in the slightest bit brave – it was a necessity.

To me, there are two choices when you receive the terrifying and devastating diagnosis that you have cancer. 1. You can believe that your fate is decided and that there is no hope and therefore give up or 2. You do whatever you can to rid yourself of the disease and carry-on living each day to the best of your ability. In my case, there was no choice – I refused to think there was a possibility of death, so I was just going to knuckle down, do as I was told and get on with it. I wasn’t going to let it beat me.

Don’t get me wrong, it wasn’t easy and it wasn’t plain sailing all the time, there were difficult days when I honestly thought ‘I can’t do this,’ but they were in the minority. Doing as I was told, following the medication routine, trying to eat (even if it was just a packet of digestive biscuits because I couldn’t face anything healthy), trying to do small tasks or just resting if that was what was needed, was the only way for me to move on and start rebuilding strength.

Being brave wasn’t part of it. The days when you are being sick constantly, can’t eat due to mouth ulcers, can’t think straight because the drugs have addled your brain or can’t stay awake because you are just exhausted are all part and parcel of recovery. Each day has to be tackled and dealt with and then left behind so that every morning is a new morning with a new hope of feeling better. I did think at times I was being selfish, but quickly realised that for once I needed to put myself first and let everyone else look after themselves. My focus had to be on me and do what I thought was right for me.

I also truly believe that cancer patients find a hidden inner strength. It may not surface immediately, but everyone I know has got through those bad days in their own way and in their own time. Sometimes the bad days go on for a while and then suddenly one morning, you wake up and think, I feel like going for a walk or I think I might have some breakfast or whatever. That inner strength has got you through the latest bad phase and moved you into the next more positive one. Each time you go for chemotherapy, that inner strength is there to ensure that you turn up, get hooked up, even though you know it is not pleasant and that it may hurt, and that you cope because the determination to get better is there, deep down.

I think everyone has that inner strength, even if they don't think so, to deal with all sorts of situations, not just a cancer diagnosis. We all have tough times – problems at work, problems with family or friends, problems with money and at times it can feel like there is no way through but I truly believe that if we stop and think calmly, that inner strength will surface and help us through. It is there in us all; we just need to search for it and then put it to good use.

So, in that way, I DO believe that if my friends were to have a similar diagnosis, they would be ‘brave’ and they would cope with the support of friends and family and with their own inner strength. We all react in different ways but we all have the ability to switch the negative to the more positive by changing our own mindset. As I have talked about in the Rainbow readers, Dame Deborah James was a great advocate of finding the positive in every situation and being grateful whatever our circumstances. This positive mindset can make a huge difference in our ability to deal with problems, how we tackle what life throws at us and how we come out the other side. It ignites our inner strength and helps us to focus and overcome and move on.

So, I still don’t think I was brave. I tend to think that I was determined – determined to get well, determined to do what I felt I could do, determined to get back to normal and determined to beat cancer. Time will tell, but for the moment my body has ‘no evidence of disease.’ For that I feel truly grateful and extremely lucky – lucky that they found the tumour, they removed it, they filled me with drugs to prevent the cancer spreading and they are checking on me regularly to make sure I remain cancer free. It wasn’t pleasant and I wouldn’t wish it on anybody, but I do know that it is possible to get through it. We potentially all have that strength and that ability to overcome our own difficulties, to push through the pain and to come out the other side. We just need to believe in ourselves.

Tips

Treat cancer like any other illness where possible. Accept it, follow the medical regime set out for you and do what you can to put yourself in the best position for recovery

Instead of thinking why me, think why not me? It could hit anyone but it is you and you will deal with it

Believe that you can beat it, build your inner strength, knuckle down and do what you have to do

Try to find something positive in every day – you woke up! The sun is shining! You feel strong enough to sit in the garden! It doesn’t matter how small that positive is, it is still a positive and it will help you through each day to focus on what you can do, rather than what you can’t

Be grateful that you are being looked after and that the medical profession are doing everything they can to make you well - you are in the best hands

Know that although there are bad days, better days will come

Believe in yourself, you are stronger than you think!