The Big C - 2022

Dealing with cancer can be a lonely place.

Life is tough for everyone at present. We are all coming to terms with getting back to normal after two years of pandemic upheaval, we are dealing with a cost-of-living crisis, strike disruption and endless shortages and currently we seem to be going through the coldest spell of weather we have endured for a number of years. The likelihood is that many people just want to hunker down in their own homes, keep warm and get through each day. I totally get it, but for someone living with cancer, this can make life incredibly lonely.

One of the things that hit me most about cancer was the unexpected feelings of loneliness which struck me at times. Life took on a 3-week cycle and being still within pandemic times, a lot of it was done on my own. The first week is treatment and recovering from that – patients suffer from a variety of symptoms including sickness, apathy and fatigue. Just getting through the day can be a major ordeal and having to cope with anything else can just be too much. The second week of the cycle is when your immune system is at its lowest and you are not supposed to mix with people and expose yourself to infections which could potentially be dangerous. The third week, is your ‘normal’ week, when you can get out and about, have visitors and generally just live. But by then, you are often so used to being on your own you just continue to do so or you haven’t had the energy to actually book something in advance and everyone else seems busy getting on with their own lives. With treatment lasting for 6 months or so, you can find that you are spending far too much time on your own, and having time on your own means too much time to think!

This self-isolation, can also lead to another issue which is getting back to mixing with people once your treatment is over. I was struck by a lack of self confidence which is apparently very common. It made chatting to people a little tricky for a while. I didn’t feel that I fit in anymore. I’d not been to my usual clubs and activities and the groups of people there had moved on. Friendships had altered, work places had switched, new routines had been organised and suddenly I didn’t feel a part of it all, though I have to say everyone was wonderful and did their utmost to make me feel welcome again.

So, what can you do to help prevent this from happening? I was lucky that I had a little group of friends who messaged and texted me regularly, keeping me up to date with what was going on but sensitively, so that I didn’t feel that I was missing out on all the fun. Having that regular contact was great. I felt looked after and cared for. I kept in touch with people by telephone and arranged to meet up with others during my good week even though it was an effort. You might be lucky to have a cancer care centre nearby such as Maggie’s which I have been told are excellent. These are drop-in centres where you can go and have a chat, ask for information or join in a group activity. They are open to everyone who has or has had cancer as far as I know.

There are helplines that can be contacted for advice and support. MacMillan provides such a service with lots of experts on hand to help you through difficult times and to explain things that perhaps you don’t want to ask the doctors and there are numerous online sites some directly connected to cancer, others just general, such as Re.Build.Me set up by Dame Deborah James, with like minded people who are happy to offer support and tips to others. I’ve mentioned in a previous month the charity ‘From me to you’ which sends out encouraging and supportive letters once a month and I have loved receiving these and found they give me a real boost.

The emergence of Zoom during the pandemic has also been a great boon to cancer sufferers. Some groups can set this up so that although you cannot physically attend, you can still take part in a session and there are numerous workshops and talks (such as the virtual WI) which can help keep you connected to the outside world.

But ultimately, it is up to you the patient and you the supporter to ensure that someone does not experience that feeling of isolation and loneliness. Think about what you can do yourself or what you can do to help someone else, to be there for them and to ensure that they can live life rather than just exist. It may not be a full life or their normal life, but it will make a difference to their life I can assure you.

Tips for a cancer patient

Keep in touch with people that you know will be supportive whether by phone, texts, e mail, letters or any other means.

Try to organise some visits or outings for your good week. It will be something to look forward to and keep you connected with the outside world, but know your limitations.

See if your usual activities and clubs can set up a zoom session so that you can join in and still feel a part of the group.

Sign up for any interesting workshops and talks online that you can find to help keep you occupied when you are not able to get out and about.

Pop into your local cancer care centre to meet other patients and to discover what is available in your area.

Don’t be afraid to contact a Helpline. They can listen to your worries; help you feel connected and point you in the right direction for help if necessary.

Contact the charity ‘From me to you’ to receive a monthly pick me up in the mail.

Cancer can be a lonely time but with care, understanding and some planning, it really does not have to be.

I may not look it, but I know that I am not 100% - I am not the person I was before. I am exercising and building stamina but hit me with a flight of stairs or an incline and I am quickly out of breath. That never used to happen. I seem to be susceptible to infections which never happened before. I still struggle some days, particularly when I am tired, with focus and concentration and finding the right words, and the fear of cancer, however hard I try, remains at the back of my mind. Where once if I was feeling a bit off, or had an ache I would brush it off and work my way through it, these days the feeling is, should I be seeing a Doctor? Is this something more sinister? Could it be the cancer returning or another type of cancer? I NEVER used to think like that. Cancer was just not on my radar, but now whenever someone is ill, it is the first thought that crops into my mind even though I know it is illogical and highly unlikely. I just can’t stop myself.

I know that although I passed my first year checks, I have 4 more years to get through before I can declare myself free of cancer. Today, there are 'no detectable signs of cancer,' but I am not cancer free. There is a huge difference. My cancer was so unexpected and so off my radar, that the thought of having another one detected is no longer stupid in my mind, it is possible. Who knows? And although I should be able to get reassurance from a Doctor, getting an appointment in my area is still nigh on impossible.

I have also found that people’s attitudes change quickly once you admit to having cancer. This can work in your favour (I did manage to get a medical appointment by saying I had just come through cancer!) as people do tend to suddenly become sympathetic. But it can also be embarrassing or hard to deal with if you suddenly get faced with a barrage of questions about your experiences when really you don’t want to think about it.

There are other aspects of my life that have had to change. I am now exercising regularly and am thrilled with the progress I am making, achieving my goals far quicker than I did first time around when I hadn’t realised I was ill, but I’ve had to make adjustments. I run on the flat now. I exercise in shorter bursts. I make sure I have rest days. None of this was necessary before. And because I have made adjustments I am very hard on myself – I should be doing better, I should be climbing mountains, I shouldn’t need to rest.

I was recently told by a Doctor that the effects of the chemotherapy drugs can remain in your system for up to 10 years. With that in mind, I am actually doing brilliantly but it is hard to tell yourself that when you see other people recovering faster or you are not achieving what you were pre diagnosis. I have to remind myself that other people have gone through different drug regimes, different surgeries and we all heal at a different rate.

I may look the same to others but again, I am different. I put on some weight due to eating junk when I was having chemo and could only face eating certain things. I don’t like anything tight around my stomach anymore because it rubs on my scars and feels uncomfortable. My fingernails are weaker and keep splitting. There is always something that just isn’t quite right.

On social outings if I need to use the bathroom quickly and there is a queue I sometimes use the disabled/accessible toilet. That is different. I often get scowls or people looking at me because I look perfectly healthy and they feel I shouldn’t be using these facilities. In reality, I am now classed as disabled. I have a hidden disability and I am fully entitled to use them but that is hard to accept. I don’t feel disabled, I don’t look disabled and to all extents and purposes I am not disabled. But in medical eyes, I am classed as such.

In my head I am also different. I don’t spend my days worrying. I am generally managing to remain calm and focussed but there are times when cancer invades my thoughts, particularly at present when I see the numerous adverts, news reports and headlines saying cancer figures are at their highest, thousands of people have not been diagnosed and if you have this, that or the other symptom you should seek medical advice. (Good luck with that one!) I have a cough. I’ve had it for years. It is frustrating, annoying, exhausting and although it has been mentioned several times at the doctors, I am more often than not just sent for a chest x ray to make sure ‘there is nothing sinister going on.,’ horrible horrible words. As much as I know it is unlikely, those words remain in my head until I get the results. In my current case, I have been waiting nearly 4 weeks and there are no results as yet. That affects the mind, the mood and the way I approach life if I don’t work hard to prevent it.

There is always a risk that the cancer will return so it is hard not to be constantly on the look out for signs and symptoms. We are told to be aware, to notice differences, to seek help but this can take over if you allow it to. So in my mind, no it isn’t all over yet. I am doing well, I am feeling good, I am working hard on getting back to normal but it takes time and allowances do sometimes need to be made. It is hard when people expect me to be the person I was. I am not. I am different. I am still in recovery and I don’t know how long that will last, so if I say I am tired, or sad, or frightened, please respect that. Be there to support me on the tough days and help me enjoy the good ones.

Once you are touched by cancer, whether it is personally or with a loved one, I am not sure that it is EVER over. Cancer leaves its mark. It is always there on your medical records, in your scars, in your head. We can work hard to make sure it doesn’t take over our lives, we can move forwards but is it ever really over? I don’t think so!

Tips

Go easy on yourself. Take all the time you need to get fit and healthy and as close to normality as you can.

Ignore anyone who tells you, you should be over it and moving on. What do they know?

Be honest with people if you are having a bad day or a rough time. Most people are understanding once you explain but it is difficult for them to tell when to all intents and purposes you look fine on the outside.

Be aware that the fear of cancer may hit you at any time and completely out of the blue. This is normal. I am told it gets easier in time.

Celebrate each milestone. Look how far you have come and make the most of any opportunities that come your way.

Set yourself small goals and make the appropriate changes that you need to achieve what you want. You may not be doing things exactly as you were, but you are improving constantly.

Be persistent with the Doctors. If you need to see someone or you need to talk something through, insist on seeing someone. Do not let your fears overwhelm you because generally what is in your mind is far far worse than anything happening in reality.

Remember that every cancer survivor is different. We have all been through different surgery, different regimes, different chemo and it affects everyone in very different ways. Do not compare yourself to anyone else. You are you. You will get through it in your own time and in your own way.

Know that you are strong. You are amazing. You have achieved so much.

Cancer may have changed you but it does not define you.

When I first learned I had cancer and was likely to have chemotherapy I was understandably terrified. But what made it even worse was the response from other people. Almost inevitably the first comment would be, ‘Oh no, you will lose your lovely hair,’ or something similar. So, by the time I went for my first oncology appointment I was in quite a state.

Don’t get me wrong – I am not a vain person, I do not spend hours making sure my hair is perfect nor can I say that I look particularly groomed even on a good day, but my hair was a huge issue for me. I suspect it is because I have a fair amount of it! It is long, it is thick and I have a tendency to hide behind it when I am feeling particularly shy. It is a barrier to the outside world. And losing that, was terrifying.

Most cancers are hidden. They are not visible to other people and they can remain hidden to a certain extent but as soon as you lose your hair, it suddenly becomes apparent to everyone that you are suffering from cancer and you start to get the curious and then sympathetic glances. I was desperate to avoid this. I also worked with children and didn’t want to frighten them.

I’ve known friends who have lost their hair and they have said it can be difficult to come to terms with. Even more so is the losing of eyebrows and eyelashes which define the face. I also knew that there were things that could be tried to prevent hair loss and excellent wigs available, but despite the pain of surgery, despite the fear of chemo and the other side effects – I really was most upset at the possibility of losing my hair.

At my oncology appointment I was asked if I had any questions and one of mine was ‘Will I lose my hair?’ I have since been told that there are two questions that practically everyone asks at their first appointment: ‘Am I going to die?’ and ‘Will I lose my hair.’ In my case I was lucky. The oncologist was able to tell me straight away that I shouldn’t lose my hair, that the regime I was on and the cancer I had, might weaken it or make it thinner, but that I was unlikely to lose it all. If it seemed to be thinning quite significantly, which was unlikely, then we could discuss getting a wig.

The news was a huge relief to me and helped put my mind at rest. I decided that the best thing to do was to get it into the best shape possible before treatment started and seek advice from my hairdresser. I also spoke to another friend with a different cancer who had used a cold cap. I had seen this in use on my visit and it looked pretty basic considering how far technology has come. This is a tight cap that is fitted to your head before treatment and freezes the hair follicles in an attempt to stop them dying. There is no guaranteed success and it works for some people and not others. I am told it is painful but that if you can get through the first ten minutes, it is worth doing. Some people can tolerate their head being frozen, others cannot. It is a personal choice. In the event, I wasn’t offered it. One friend succeeded in keeping her hair after using the cold cap, another lost hers almost immediately. There appears to be no rhyme or reason to it.

I have also had friends that have gone down the wig route. In all honesty, I had no idea at the time, it just looked like their normal hair, such was the quality of the wigs. Patients are given help in buying wigs and there are workshops that you can attend in person or online to help you choose and to help you look after your ‘new’ hair. The Look Good Feel Better charity offers fabulous advice, workshops and ideas on different head coverings if you don’t want to go down the wig route.

After the first session of chemotherapy, I reacted really badly and suffered from severe side effects for several weeks. At one of my weak moments, I remember turning to my husband and saying, ‘If this is what it is going to be like, I would rather lose all my hair instead,’ At that point, I really didn’t care. And afterwards, when everything was over, I had time to think. With everything I had gone through, would it have mattered so much to lose my hair? Should I not just be grateful for being well, for having got through it all? I still think I would have been desperately upset but in the grand scheme of things I can now see that the important thing was getting rid of the cancer and perhaps losing your hair is a small price to pay for that. And it is not permanent. Hair does grow back again.

I suspect if I have to go through chemotherapy again, I would still be upset – perhaps it is a female thing, perhaps it is because I have always had long hair - but I also know that I would get through it. The fear factor built up in me due to the vast number of comments I had prior to treatment which wasn’t helpful and if you are reading this and know someone who is about to start cancer treatment, perhaps it will make you stop and think. Those of us who are dealing with cancer have enough on our minds. We don’t need to be told what may or may not happen as generally we are focussed on the here and now. We don’t need to be told that we will look different because we already feel different, so please please stop and think before making that comment. You may not mean to be hurtful but it does hurt. And if you are going through treatment and know that this is likely to happen, remember it is not permanent. You are still you and you will overcome this just as you are overcoming everything else.

Tips

Get your hair in tip top condition by going to the hairdressers for a good trim

Only brush your hair when it is absolutely necessary so that you are not weakening it further

Use a gentle shampoo and conditioner and wash your hair infrequently. Ask your hairdresser for advice and avoid tying your hair back with bobbles and clips.

Ask about the cold cap and whether you might benefit from it and talk to people who have used it

If you need to, take any advice, help and support on offer for choosing a wig and have fun with it! Perhaps change the style or colour to give you a boost! This is the ideal time to try lots of different styles.

Ask any questions that you need to regarding hair loss. Those in the oncology department are the best people to advise alongside other cancer patients who have ‘been there, done that!’

Do what you feel most comfortable with.

Remember it is not a permanent outcome. Your hair will return. It might be different for a while (obviously shorter and apparently often curly to begin with) but it will return to normal.

Remember: you are strong, you have overcome so much, you can deal with this too. Your hair is not the be all and end all of you. Have courage and pride. You are amazing!

And if you are a friend or relative of someone dealing with a cancer diagnosis, be there, listen, show your understanding and do not talk about losing hair unless the patient themselves wants to talk about it!!

Look good feel better

Facing cancer with confidence

www.lookgoodfeelbetter.co.uk

There are so many things that hit you when you have cancer. Dealing with the diagnosis is the first priority but then there are also the emotional and physical changes that take place and often take you by surprise. The chemotherapy regime is different for every case and the results are too. Some people may experience weight loss or weight gain, some lose their hair or it thins, others lose their confidence and motivation. Many experience feelings of loneliness and isolation as no one truly understands how you are feeling, your worries and fears unless they have been through something similar themselves. It can be a difficult and uncertain time to negotiate.

As I was diagnosed during the pandemic, the feelings of isolation hit particularly hard. I went to all my treatments and the majority of my appointments alone and although there were other people in the room, we were spread out and separated by screens which made chatting difficult. At home I was having to keep my distance from everyone so there were many times when I truly felt isolated. I was lucky to have friends and family making phone calls, sending text messages, letters and gifts and they were fantastic – a huge help at making me feel I was still part of the world and not completely alone.

My local cancer care drop-in unit shut at the beginning of the pandemic so there was nowhere for me to meet other cancer patients or to get advice and I must admit, some of the side effects and emotions I was feeling caught me by surprise. I was told about the charity Look Good Feel Better by a friend also undergoing cancer treatment and decided to check them out. They are a national cancer charity that recognises how difficult and challenging it can be to cope with and process a cancer diagnosis and to manage the many physical and emotional side effects of treatment and recovery. Pre covid they held workshops in cancer care centres and hospitals and these are up and running once again in many areas, but during covid they set up a variety of online workshops so that they could continue their fabulous work. These too continue, giving people a choice of whether to attend face to face or from the comfort of their own home. For those struggling with changes to their looks and confidence, these can be an incredible lifeline!

The workshops are led by trained volunteers, many from the beauty industry who are able to give encouragement, support, and great practical advice. The online groups are quite small and it is a safe, gentle way to meet others in a similar situation. Workshops cover a wide range of issues that cancer sufferers can experience such as changes in appearance, weight, mobility, nails, hair and general well-being, many of which patients are not warned about.

Workshops are available for women and men and give purpose to the day, filling some time when you spend most of it on your own. They really do help make you feel as though you are not alone. Sessions on hair loss and coping with new growth, nail care, skin care and make up, styling for confidence, chair Pilates, meditation and breathwork, chair Tai Chi and Qigong are all on offer, amongst others and are totally free.

I have attended the Styling for Confidence session as my physical appearance and weight changed after abdominal surgery and the Skin care and make up session. At both I picked up some useful tips, met a selection of ladies at different stages of their treatment and felt able to ask questions. The Styling for Confidence gave me suggestions on how to hide problem areas that I was self-conscious about, what colours to choose and how to make the most of the parts of my body I felt good about. The make up one talked me through a skin care regime and daytime make up look, with hints for those who had lost their eyebrows and lashes during their treatment. After the make up one I received an amazing bag of fabulous cosmetics from big name companies who all donate products to the charity, recognising the amazing work that they do. The hair loss one apparently gives great advice on scalp care, choosing and looking after wigs and how to cover your head in different ways using scarves etc.

Online you can access tutorials, find a list of useful contacts, an online shop and information on how to get involved. Many of the tutors have experienced cancer themselves or have had friends and family with cancer. Their aim is to help reduce the feelings of anxiety and loneliness and encourage people to feel better about themselves whatever their circumstances. If you are confined to bed, you can still join in and get involved.

It is an amazing charity and one which I would recommend looking at. There aren’t many advantages to having cancer but this is one of them! Make the most of it and support it if you can.

Tips

Know that during and after cancer treatment you are going to be different: physically, emotionally or both. Accept it, find ways of dealing with it and move forward

Make the most of any charities offering help and support. It is not a sign of weakness but a sign of strength to seek help from others who can guide and support you through the difficult times

Find ways to help you pass the time if you are stuck at home, in bed or just don't have the energy to get out - access these workshops for practical help and as a gentle way of getting back into exercising

Chatting to others in a similar situation can help in so many ways. We all have useful tips to offer, things we have learned on our own journeys that could help others

Make the most of any freebies that come your way! There aren't many good things about having cancer but charities like these do their utmost to bring joy into your new world.

Grab them while you can and support them when you are better!

Do I need counselling?

Taking up the offer of counselling and what it could do for you.

Have you ever chatted to a counsellor? Or seen the need to? I haven’t and never really thought it would be of use to me. I am used to talking things through with friends and family or battling on through by myself, working things out in my own time. But very early in my oncology journey, I was asked, ‘Would you like me to sign you up for some counselling sessions?’ To be honest, at that point I was in such a daze, I said yes to anything that was offered without really thinking about it, figuring that if I changed my mind I could stop the process at any point.

As it happens, counselling was not available for quite some time. I had merely been put on the list. So at the beginning when I had lots of questions that few people could help me with, there was no help available. I was lucky (?) that I had friends either going through the cancer process or had been through it that could answer some but not all of my queries. And during chemotherapy treatment, there still was no counselling available due to the volume of people seeking help, but I had the nurses in the oncology department who were brilliant. So I forgot about it and just assumed that it would not happen.

In the end, I had my first appointment the day before I was discharged. Due to Covid restrictions, the appointment was by telephone but I actually found this far easier as I didn’t have to travel anywhere, battle with traffic or endure the traumas of finding a parking space! It was rather odd meeting up with a stranger via screen despite having got used to zoom over the previous two years and I had no idea what was going to happen or what I was supposed to say. I’m quite wary with strangers and tend to try not to reveal too much, so was a bit nervous.

Sarah, my counsellor, swiftly put me at ease explaining that the sessions would go on for as long as I felt I needed them and were to just talk through what had happened and the way I was feeling. The first one was mainly background information on my cancer, how it had been diagnosed, how I had coped with it all and how I was currently feeling. Sarah made it quite clear that she was not there to provide me with advice or answers but would help me come to my own conclusions as we talked things through. I was surprised by my reaction. By the end of it I was crying. I hadn’t expected that but as we talked, I realised that for the first time, I had been completely honest. Honest about the shock I had had, honest about the way I was feeling and honest about my fears for the future. Throughout my diagnosis, surgery and chemotherapy I had not been as honest with anyone else, not even close family. ‘I’m feeling ok,’ I would say, ‘I don’t feel too bad,’, ‘I’m feeling a bit rough,’ being moderately truthful but hiding the full facts. With Sarah, I didn’t need to do that.

It was a huge relief to be completely open. I had shut myself in my study to take the call, away from the rest of the family and I felt free, able to open up and say exactly what I was thinking. Some days I was angry, others upset, bewildered, frustrated .. you name it, I probably felt it at some point. Sarah couldn’t explain why I had been struck with cancer or how I would feel in 6 months time or what my prognosis would be, but she WAS able to tell me that all my reactions and emotions were entirely normal, that there would be good days and bad days and that it was important to be kind to myself and to take things one step at a time.

We realised very early on that I was putting myself under a lot of pressure to ‘get back to normal’ and we talked this through in depth and it helped. I opened up, I cried, I worked things out and surprised myself by looking forward to the next call and being able to show that I was progressing, that I was coping much better and that I was actually planning for the future – a huge step after months of just getting through each day. Some people told me that I would be allowed 6 sessions of counselling but this was not the case. Sarah’s view was that if I needed it, we would continue, for as long as necessary. As we progressed the gaps between appointments grew longer but I was always told that if I needed support, I could ring the department and ask for an earlier meeting. After losing the reassurance of the regular visits during chemotherapy, the counselling sessions became my go to place with concerns.

On what was to be my last session, we both recognised that I had come a long way and that mentally and emotionally as well as physically I was much stronger. We both felt that there was no need to continue, but again I was given a period of grace. No appointment would be made and I would receive a letter after about two months suggesting that the sessions would permanently end. However, during that time, I was to ring at any point if things got too much for me. That was all the support I needed. I felt ready to strike at alone but it was good to still have that option if things should change.

My view on counselling has changed considerably. At first I was wary and a bit suspicious, doubtful that there would be any point to it but my views changed quickly. Whether it was because I was lucky with the counsellor I got, or whether I actually realised that I needed those opportunities to talk about anything to a complete stranger, I don’t know, but it helped. And because of that, I would say to anyone going through chemotherapy treatment, if it is offered to you, then take it! Give it a go. It might just make a huge difference to the way you feel and the way you recover from your illness.

TIPS:

Say yes to any help that is offered in whatever form. You can always change your mind at a later date, but many of these services have a huge waiting list so get yourself on it at the earliest opportunity.

Be prepared to be open and honest. The counsellor cannot help you if you keep everything bottled up.

Be aware that it can be exhausting and emotional. I found that I had a little cry after every session but it was cathartic rather than upsetting. It was good to be able to speak openly to someone without worrying how they would cope!

Ask whatever you need to ask. They won’t give you direct advice or answers, but they should ask questions that help you reach those answers for yourself. What they CAN provide is reassurance.

If you feel that you still need help and support, then ask for it or ask for guidance on where to seek it.

Remember, talking is good. Talking about your experiences and thinking it through can make a huge difference to your overall wellbeing and help you understand why you are feeling the way that you are.

We are all different. Our cancers are different. And we react differently. This is my experience but I honestly feel that it is worth giving anything a go to help you through one of the most difficult times of your life.

Scanxiety

Regular checks, scans and tests.

I’d not heard of this word before, but I came to understand it very well! Once treatment is over and some form of normal life returns, cancer survivors do try very hard to move on and forget what they have been through. We are lucky in that our brains can blank out the worst bits after a while and make us forget, just like childbirth – once the baby arrives, we almost forget the pain and discomfort in our love for our new-born, and as time passes and our bodies heal, we forget how painful childbirth can actually be. Cancer treatments can be the same or certainly were for me.

But then it comes to the first-year check time. Most sufferers are told they will be under surveillance for 5 years. At the time this didn’t mean much to me apart from reassuring me that I would be having checks of some kind to make sure that there was nothing lingering and that any changes would be picked up and dealt with promptly. I was sent a discharge letter with details of what these checks would be and mostly it was blood tests for 6 months and scans each year but horror of horrors, I was to have another colonoscopy. Of all the tests I had, this was the one I struggled with most. Not the test itself but the preparation involved. I was terrified the first time around and that fear but also that resignation hit almost instantly. I didn’t want to do it, but I knew that I had to!

What I hadn’t realised was the effects of scanxiety which I have since been told by many survivors, takes years to disappear if indeed it does at all. You may feel completely well, have your life back under control, need no further medication but when a letter arrives telling you of an upcoming scan, blood test or other investigation, the original fears come flooding back. What happens if …? If they find signs that the cancer has returned? That there is cancer somewhere else in my body? That my operation has failed? Etc etc. The list goes on and on. The fear comes flooding back from those first few days when you are told you have cancer and you have no idea what is going to happen. This time around, you DO know what will happen if cancer is detected and in some ways that is worse. Even when there is no evidence of anything being wrong, no signs that there might be a return of cancer and in fact you feel healthier than you have done in years (in my case), that fear and anxiety is there and growing as the time for the check up approaches.

I found the prep for the colonoscopy even harder this time and I worried that the investigation wouldn’t go ahead. My husband and daughter had Covid and although they were isolating, what if I had caught it? The prep made me vomit this time so I couldn’t finish it all. What if they decided I hadn’t had enough and failed to go ahead? What would they find when they investigated? Would my new join be healthy or be showing signs of failure or disease? I just couldn’t help myself. I told them I was scared and explained my fears and they were of course all wonderful and at least with this procedure they can tell you straight away if they have found something.

Scans are a different story. The results for those do not come through for several weeks. The fear intensifies until you get a phone call or letter to tell you it is clear. Once again, it is the fear of the unknown, the fear of not being in control, the fear that things are happening in your body that you know nothing about and cannot stop.

I’ve not met anyone yet who doesn’t suffer from scanxiety to some degree. It is perfectly normal and perfectly natural, the important thing is to not let it get out of control. It is vital to speak to people, to explain, ask questions .. whatever you need to do to get yourself through and back into normal life. For me, there were tears. My mind went back to the darker difficult days for a while and I had to work hard to push myself through and believe - believe that everything would be ok and that it was the next important and essential step back to normality. And when that letter comes through to say ‘nothing abnormal was detected,’ or ‘there are no signs of disease,’ then the fear can abate for a little while. Until the next set of tests!

TIPS

Accept that scanxiety is a normal part of the healing process that everyone goes through. It is natural to be worried but try not to let it get out of control.

Explain to the medical staff how you are feeling and what you are worried about. They will do their utmost to put you at ease and help you through the process

Believe and have hope. Tell yourself that there is no reason for anything else to be going wrong. Your treatment has worked and you feel ok.

Tell your family and friends how you are feeling so that they understand if you are upset or frightened. If they understand, they will do what they can to help you through what is a difficult and stressful time.

Keep yourself busy and active with lots of things to look forward to. This will help keep your mind occupied and give you focus to your day.

You can do this! Be brave, Have hope. Have faith. It will get easier!

So, are you back to normal now then?

One of the worst mistakes I made during my treatment, was assuming that once it was finished, I would be back to normal i.e. back to the way I was pre illness. I thought I was being sensible and realistic – chemotherapy finished end of October/beginning of November, so I would get through Christmas and from January 1st, the start of the new year, I would be doing everything I was before. Life would be normal, back to the way it was, and the cancer would be a distant memory. How wrong could I be?

(Remember this is my story! I have friends undergoing treatment or who have finished treatment for different cancers, and their experiences have been totally different.)

The first thing that surprised me was that I actually missed my three weekly visits to the oncology department and I never thought I would say that! I didn’t miss the infusions, the tablets or the side effects, but I missed being able to chat to the nurses about any concerns I had or any issues I was suffering from. I even missed having my blood pressure, temperature and blood levels checked. Although they were a pain to have, they provided much needed reassurance. I suddenly realised that I was cut adrift – left to my own devices. As far as oncology was concerned, I had been discharged and suddenly I was on my own. Taking away that safety net, that regular check in, was tough to deal with. My life had revolved around appointments for the previous 6 months and suddenly there were none in my diary. It was completely empty.

I was still feeling very tired and lethargic and had assumed that after a couple of months off I would have a new lease of energy. It didn’t happen. I was also struggling with my eyesight, nerve pain in my teeth, chemo fog and sore feet – after effects from the chemotherapy. I was being told to get back to normal but was actually feeling just as bad if not worse than during the chemo! The pressure I put on myself to be ‘normal’ was not good, but well-meaning neighbours and associates also kept asking ‘So are you back to normal now that it is all over?’ ánd that increased the pressure because actually, it wasn’t over. I still had a long way to go. I was still trying to come to terms with what I had undergone and how my body had changed. I was still trying to deal with all the different emotions that would hit me when I was least expecting them and I was still trying to deal with the fact that my recovery in regaining strength and stamina had quite a way to go.

I’ve been told to forget it and move on. I’ve been told that I look fine so I should be fine. I’ve been told that now that everything is over, I should be doing all the things I was doing before. It’s not that easy! I haven’t as yet regained the stamina I had even though I am a year down the line. But I have come to realise, slowly, that it is unrealistic to forget and move on. The last year has been an experience I wouldn’t wish on anybody. It has changed me. I am no longer the person I was because I am now aware of what can happen. I’m still dealing with after effects and I still need to come to terms with everything. Each day and each new achievement helps me to do that, but I now understand, there is no time limit. People can take years to get back to anything resembling ‘normal.’ Others can do it more or less instantly. It is not a race and we all get there in our own time. We should not be put under pressure by other people expecting us to be 'back to normal.' Life is full of uncertainty and having been touched by cancer, that uncertainty is perhaps more than experienced by others, but I am heading towards my new normal, making plans for the future and working out what I want from life. My priorities have changed and my outlook on life has changed. And I will get there, but it will be in my own way and in my own time!

Tips

Ignore anyone that says you should be back to normal now that treatment is over! What do they know?

Take your time and don’t put undue pressure on yourself. Take it one day at a time or one step at a time. Every minute of every day is an achievement.

Everyone recovers at a different rate so don’t worry if your friends seem to be improving quicker than you. We all react differently. You will get there.

Take any offers of help and support that you are given. It will make things easier for you.

Try to keep your anxiety under control. We all worry about the future and it is natural to worry more after a cancer diagnosis, but this does ease with time. Talk to family and close friends so that you can make sense of how you are feeling and so they can help you to keep things in perspective.

Remember it is not a sprint, it is a marathon. It takes time both emotionally and physically to come to terms with what you have experienced.

Your new normal might be different to your old normal but is still worth celebrating. Every day is there to be enjoyed. Make the most of each and everyone.

Remember how amazing you are! Think about what you have come through, what you have dealt with and how you are moving forward and be proud!

Let's ring that bell!

It is amazing how quickly you get into a chemo routine. You know roughly how you are going to feel after each session and you adjust mentally and physically. I learned to be very careful to avoid anything cold for the first few days, to eat what I wanted to avoid queasiness and to rest as and when I needed to without feeling guilty. An afternoon nap seemed to happen quite naturally and I realised this was a good thing and gave me extra energy for the evenings.

The first week of each session was pretty much wiped out as that is when the worst of the side effects would hit, but when I felt well enough and had the energy, I began to appreciate going outside for a short walk or chatting to a friend or pottering about the garden. The second week is when you are technically at your most vulnerable and are supposed to avoid mixing with lots of people. Being in the middle of a pandemic, this was no problem for me!! And then the third week comes along, and although you might not feel 100% you know this is going to be your best week when you have more energy, you are sleeping better and you have the motivation to want to do stuff. I very quickly learned that this was the week to plan activities for or to meet with friends. It was definitely a pick me up as having cancer/chemotherapy can be a very lonely and isolating time.

Coping with chemo after effects

I’m not normally a weepy kind of person but over chemo I most certainly was. Pain, frustration, fear, feeling sorry for myself, people being kind – it didn’t take much to set me off. My emotions were all over the place. The tablets had another lovely side effect too – diarrhoea which was normal but added to the exhaustion and discomfort as my new bowel was still sorting itself out. My biggest problem was feeling totally pathetic and hating myself for it. I could not motivate myself to do anything and relied on Facebook friends to help me through. (They were wonderful) Looking through my diary, I have written ‘This is truly awful,' a bit of an understatement at the time!

As the days progressed, I was craving fresh food – salads, fruit, ice-cream – all the stuff I couldn’t eat because it was cold and would set my teeth, fingers and throat into painful spasms once again. The sachets and rehydration for diarrhoea made me feel queasy so I gave up on those very quickly. Each little job I tried to do, left me feeling exhausted and needing to rest or sleep. The thought of feeling like this until Christmas when my chemo was due to stop was horrifying. As much as I knew I had to go through it, I did wonder if I had the strength, both physical and mental, to do so.

Gradually I started achieving a little more each day – just tiny steps, but progress nevertheless. Everything was done slowly with lots of rest periods built into it, but it did mean I could go for short walks, or chat to people (Covid restrictions allowing) or sit up for a while. My oncologist rang to see how I was getting on before session 2 was started and I was horrified when she decided to delay it. I actually cried and begged for it to continue so that I could just get it over with. I shocked myself in the way I reacted but I was told that due to the number of side effects I had had and the fact that I wasn’t eating or drinking properly and had no energy, it would probably end up with a hospital stay if they went ahead. Problems with my eyesight were particularly worrying – I was finding it difficult to focus at times. She assured me that it was ok to delay treatment though I wasn’t convinced to start with and that it was essential that I rested and felt stronger before going through it all again. This happened the day before I was due to go in. I had had my blood tests and geared myself up for being back there. I even had my bag packed so it wasn’t surprising that I reacted this way.

Later that afternoon my oncologist rang again to tell me that my blood results were good. My haemoglobin level was the highest it had been so the iron tablets were working well as was my liver function. After discussion with the rest of the team, session no 2 was to be delayed for 2 weeks to give me an opportunity to get stronger and the dose would be reduced. This sent me into another panic but apparently is quite normal. My body could not tolerate a 100% dose so it would be reduced to 70% to make it more manageable and hopefully reduce the side effects. After a long chat I did feel better – calmer and less emotional but very very tired. The whole upheaval was emotionally draining.

Tips

· Avoid using cold water in any circumstances. Let the tap run warm before putting your hands under and use warm water for tooth brushing

· Zap all cold drinks in the microwave before attempting to drink anything to avoid throat spasms.

· If you feel any nausea, however small, take the anti-sickness tablets straight away. I didn’t and suffered with queasiness for a few days which I could have avoided

· Be honest with your oncologist or nurses about side effects. They can do things to help you and they want to. They do not want you suffering unnecessarily so don’t be brave and soldier on, tell them!

· Eat what you want, when you want. Now is not the time to be worrying about diets, weight gain etc. You need to eat to keep your strength up and to help you deal with what is happening in your body

· Wearing a wrist warmer, sleeveless glove, mittens, scarf, mask etc all helped when I was outside to protect me from cool breezes which would set off a spasm

· Be prepared for treatment to be postponed. This can be due to a number of reasons but don’t panic if it happens. Listen to your oncologist, ask the questions you need to ask and accept that it is being done for the right reasons.

· Do not worry if they change your treatment or the dosage – they know best and they may constantly adjust it to make sure you are getting the best treatment possible.

· Take any offers of help, support, companionship etc that are offered. People genuinely want to help so let them make things easier for you

· Equally if you do not feel up to company and just need to lie on the sofa or nap in bed, then do that. People will understand.

 Now is the time to put yourself first! Do what you need to do to get through the treatment.

Focus on the good parts of each day and gradually you will begin to recognise the pattern of your chemo treatment. Know that even if you have a bad day things will get better and be kind to yourself. You are not superhuman.

Chemo is tough but you can get through it!

Chemo session number 1!

Despite a pre visit, watching a video, talking to friends and researching chemotherapy, nothing really prepared me for my first visit to the Magnolia Centre chemotherapy suite at York Hospital. There was nothing to say how my body would cope with what was going to happen or how my mind would react – it was all uncertain. There was no reason why I wouldn’t cope but until it happened, I wouldn’t know.

Taking those first steps, on my own, into the centre was tough. There was no turning back. I had my bag packed with delicious treats, magazine, book, letters, phone – anything I could think of that might make my time there go quickly and be more bearable. I had been told I would likely be there for a few hours but again, nothing was definite. They would need to see how I reacted to the drugs before I left, there were various checks to be made and I needed to be talked through all the medication I would be given.

The nurses chat if they have time, and I was offered hot drinks and biscuits throughout the session. Most people were friendly and chatted at times, some slept, some had cold caps on, some just focussed on their books. Going to the toilet was an adventure – the drip stand had to come along too! Manoeuvring along the corridor and through doorways was tricky but luckily the cubicle was big enough to take us both! Washing hands was not easy either with the cannula in place. The infusion took around 2 hours and was followed by another flush of the system before I could ring home to arrange collection. Some people can drive themselves but for the first visit you are advised to get someone to collect you. I made the mistake of going to the loo and washing my hands before calling and was immediately hit by painful finger spasms which meant using my mobile was impossible and I had to wait for it to settle down. Having no control over my fingers was frightening at first. My wrist and arm were painful as if I had been stung by nettles and I was getting pain in my teeth and mouth every now and again too. These symptoms seem quite common with the infusion I was on but does not happen with other cancer treatments. With it being my first visit and not really knowing what to expect, this was scary – I didn’t feel ill or in pain as such, I just felt odd.

Once I got home, I was hit by something I hadn’t been warned about and it was frightening. Every now and again I would get a really sharp pain in my head, followed by a coldness that started at my head and spread through my body leaving me shivering and immediately replaced by heat from top to bottom. It happened a couple of times and I was unable to do anything except focus and wait for it to pass. Trying to eat, my teeth hurt and my mouth was going stiff and running fingers under the tap was a complete no no! By bed time I was feeling distinctly grotty.

Everyone reacts differently and everyone is on a different regime so if you are to follow a similar path, this might not happen to you or it might but in differing degrees. Remember the first session is likely to be the worst because you don’t know what to expect and fear of the unknown is a powerful emotion. No one can totally prepare you for what you will undergo or how you will react, so go in not expecting anything and just deal with things as and when they happen. Chemotherapy isn’t pleasant but perhaps won’t be as bad as you think – it really depends what regime you are on. For me, taking the tablets morning and night for 2 weeks actually was harder for a while until I got the knack of swallowing the whole lot in one fell swoop!

Make ‘one day at a time’ your new mantra. Focus on the here and now, not what is to come, or what has happened and you will cope. Some days will be easier than others: some days you will feel fine, some days you will feel rubbish but you WILL get through it.

Sending hugs to anyone going through something similar.

Tips

· Ask any questions you need to before your treatment starts

· Ask for a specific hand for the cannula if you wish. I am right-handed and preferred it in my left hand as it meant I had more mobility and also that in the following days I could use that hand freely (I bruised!). Sometimes it is not possible but the nurses will try to accommodate you if they can.

· Take things to do to pass the time, anything you wish. In the end I usually only read the paper or did a puzzle magazine, but I had options if I was delayed or felt bored and I had some lovely treats to nibble on if I felt like it.

· Use the buzzer and call for help if you have any concerns. It is better to deal with them there and then rather than go home and worry. The nurses are brilliant at explaining things and checking you to make sure that everything is ok.

· Be warned that when you move your infusion stand (eg to go to the loo), you are likely to set off various alarms. Do not worry! The nurses will hear them and come and reset the machines as and when necessary.

· Write down any important information on the medication boxes so that you remember exactly when and how to use each item

· Have fingerless gloves or soft warm gloves to help protect your fingers from the cold when you leave the building and a scarf or mask to protect your mouth.

· Take things at your own pace. Remember, this is the first step to getting rid of the cancer cells in your body and setting you off on the road to recovery.

Preparing for chemo

Please remember that these are my own personal experiences. Yours may be very different. 

Before chemo can begin, there is paperwork to sign! Lots of it! Paperwork to say that you agree to the proposed treatment, whatever it does, and are happy to go ahead. Happy was a strange word to use I thought, I wasn't happy, I was terrified! I still had the option of not going ahead as nobody could say whether chemotherapy was indeed necessary in my case, but the medical view was that this was the best option to clear up any loose cancer cells that might be floating around inside my body – a mop up of anything left behind that they couldn’t spot with the visible eye. I honestly don’t think at this stage that there is a real choice – perhaps if you have tried it previously and it hasn’t worked, but at the beginning you just want to do everything you can, throw everything at the cancer and look towards the future.

The long list of potential side effects was read out again and we discussed the ones I was particularly worried about in more detail. The thought of throat spasms frightened me the most, the rest sounded bearable. Hair loss again was discussed as I had met with several people over the previous weeks who had or were recovering from cancer and they all stated that I would likely lose my hair (not helpful). One was very keen to point out all the side effects and how I might deal with them but I wasn’t in the right place and had to ask them to stop and change the subject. Hopefully they weren't offended, I just wasn’t ready for that type of conversation. Basic checks were repeated and the medical team were happy for me to progress to the next stage, a pre-check a couple of days before my first planned chemo session. Time seemed to be passing very quickly and I was still recovering from major surgery but I was told they liked to start chemotherapy within 8 weeks of surgery for optimum results. I hadn’t heard that from anyone else but they were quite adamant that that was the best time.

I had to attend the pre-treatment check on my own because of Covid regulations. I hadn’t realised that going through something so momentous on your own would be incredibly tough so was grateful for the times when my husband was allowed to attend various appointments. This time I just had to bite the bullet and get myself there and through the appointment. More notes, basic details, swabs from the nose, mouth and armpit to make sure I wasn’t harbouring anything sinister and another ECG to double check that my heart could cope with what it was going to go through. And then, I was taken through for my first look at the chemo suite. A big breath was necessary before walking down the left-hand corridor (the right one was to the consultants’ rooms, the left for treatment), stopping at the entrance for height and weight to be recorded and then further down the corridor into a large room with several big chairs in it. Some were occupied with people at various stages of their treatment – some huddled up asleep, some with cold caps, some laughing and chatting – it was a surreal experience and a scary one. Is this how I would look in a couple of days time?

I was sat in one of the big chairs that I was going to come to know so well and the questions began. How was I feeling? Had I got any concerns? What was my general health like? Had I a good appetite? Did I sleep well? How much exercise did I take? It seemed to go on for ages. Then there was blood pressure, temperature and oxygen levels to take. The nurse was lovely: very calm, very thorough, very reassuring. She talked through the treatment, exactly what would happen and how the drugs were given, potential side effects (again! Getting rather fed up of that by this point.) and asked if I had any questions.

I was given a little pack which had some basic information on avoiding blood clots, signs of infection to look out for (infections are apparently very serious and need to be dealt with immediately) and information on not having dental treatment without permission from the department. I was also given some emergency numbers that I could ring day or night if I had any concerns, worries, felt very unwell or needed an ambulance urgently – all helpful of course, but all sending my anxiety levels skywards!

More blood was taken and I was told that if the results were ok, I would attend my first treatment the day after next. I ended up asking lots of questions and I suspect I repeated myself frequently, but they didn’t hurry me and didn’t make me think I was being stupid or cowardly - they are obviously used to it.

I was told to wear comfortable clothing as they didn’t know how long I would be in the department for, to take a scarf to wrap around my mouth when I left to avoid being affected by the cold and to bring in snacks, books, music and anything that would help to keep me calm and occupied. I was told that the infusion would take around 2 hours, but there would also be an introductory chat and checks and time afterwards to make sure I was ok and not reacting badly to the drugs.

Somehow, I managed to control my anxiety and stay calm but there was a lot of information to take in and it would have been useful and helpful to have had someone with me if I had been allowed. It still felt a bit dreamlike, as if it was all happening to someone else. I felt a bit disconnected but maybe that is the brains way of dealing with everything. And then another two days to wait …. I am not sure that anything can prepare you even when you are armed with knowledge. I was given loads of information, I chatted through all my concerns but still had no real idea what it would feel like and how I would be affected because everyone is different. All I knew was that I was starting on the next part of my journey and although it might make me feel awful, it was hopefully going to do me some good.

Tips

The list of side effects will be repeated frequently. Try not to stress about them. Some people breeze through chemo without suffering from any, others are not so lucky. You won’t know until treatment starts and then you can deal with it.

Don't be shy. Ask questions. Express concerns. Talk through any fears or worries. The medical team understand this and will do their very best to put you at ease.

Be prepared for blood tests, temperature checks, blood pressure checks and lots of questions – it is all necessary to ensure that the treatment you have is right for you. Be open and honest with your answers. These are your bench marks – they will be repeated at every stage to make sure that the treatment is correct for you.

Wear easy shoes to get on and off as you will be weighed at every appointment and loose clothing so that they can do the necessary checks without you having to strip off. Separates are a good idea for easy access.

Be prepared for waiting times – appointments often run late as people come to terms with the news that they are given or need time to ask questions. It is rare that you are in and out on time as the consultants do not want to rush you or leave you needing more information. Take a book or magazine to help keep you calm.

My hospital gave me details of a helpful video that showed the inside of the chemo room and what was likely to happen. I found this helpful and put me more at ease. It is worth asking if yours does the same.

Know that you are starting on a path that will ultimately give you the best chance of ridding yourself of cancer. It might seem a tough journey and a huge mountain to climb, but you are taking the first steps so be proud of yourself.

O is for oncology

Oncology. It is a word that terrified me when I was first told that I was to report to the oncology department to discuss the next stage of my treatment. It is a word I never thought I would be using in relation to myself. My appointment was brought forward which would have freaked me out had the receptionist not been very clear that a cancellation had occurred and they were offering it to me if I wanted it and not for any other reason. She repeated this several times so I suspect she knows that people go into panic mode! Although it was during the pandemic, I was told I could have somebody with me on this occasion which was a huge relief. I wasn’t sure whether to take the appointment or not, but hubby felt that it would be good as we would find out what we were dealing with and the way forward much quicker and perhaps treatment would start quicker too.

That first session was very long. We were late going in and had to sit in the waiting room for almost an hour which did nothing for my nerves. I was also still recovering from surgery and not very quick on my feet. I met one of the oncology assistants who was doing the initial paperwork and she was lovely – friendly, calm, reassuring and patient. My wounds were checked, she listened to my heart and lungs and there was a lot of talk about poo. I am realising that with bowel cancer, that is one of the things that everyone discusses – size, shape, colour, frequency, smell – not nice but has to be done. I also met the oncologist who talked me through the results and gradings following the examination of my lymph nodes and the tumour.

It was here that I was told that my cancer was classed as grade 3 which came as a tremendous shock. I had been hoping that it wouldn’t be but because cancer was found in two lymph nodes, I was automatically catapulted to grade 3. There were 8 different scores (I can’t remember them now and I didn’t understand them at the time, they had to be explained again later on) and 3 showed areas of concern. In my heightened anxiety I wasn’t sure if that was ok, good or dreadful but I was assured that it was a good result and that it would be recommended that I had 6 rounds of chemotherapy – an infusion on day 1 followed by 2 weeks of tablets, a week off and then back to the beginning again. I did get weepy; I am not going to lie. I was sitting there listening but not really taking things in and the long list of potential side effects were just terrifying – pins and needles, peeling palms and soles, fatigue, diarrhoea, sickness, it just went on and on and on.

The scary one was throat spasms. Apparently with the infusion you can’t deal with anything cold and if you drink something, your throat can seize up. That was terrifying. I wouldn’t’ be able to take anything out of the fridge or freezer for a few days, or eat and drink anything cold. I would also be very vulnerable as my immune system would be weakened so needed to avoid lots of people, children (no more forest work for a while), infections etc. My sense of taste would likely to be affected, so that work was off the agenda too (I am a sensory panellist for a confectionary firm.)

Another scary point for me was the potential of losing my hair. I am not particularly vain and I don’t spend hours on my hair but I do hide behind it! It is long and thick and the thought of not having any and being very ‘visible’ was frightening me but apparently with the drug regime I was to be on, this was unlikely. It might thin down but I was unlikely to lose it all. A small comfort on a scary day.

At this visit, I also found out that I am now classed as disabled. Strange how that word affects you. I have an illness and they are hoping to cure it but I am classed as disabled. It is not a nice feeling. I was to return to oncology – my new home from home – in two weeks’ time to sign the official papers giving the go ahead for treatment if I decide to go ahead. Apparently, I still had a choice. It was my decision. In my head I knew there was no real choice – although my chemotherapy is classed as a ’mop up’ to try to eradicate any last signs of cancer and therefore might not be necessary, there was no way that I was not going to do it. I had to give myself the very best chance of getting rid of cancer once and for all whether I liked it or not.

At the time I had so many worries – what if the cancer doesn’t disappear? What if I catch Covid? What if I get all the side effects? I’ve never been worried about my health in the past really and have generally been in good health so this was all new to me and not something I liked! Despite the world opening up a little after the worst of the pandemic and various lockdowns, mine was closing down even further and I was finding it a very lonely place to be. It felt like I was embarking on a very long journey.

Tips

Don’t panic if they bring your appointment forward, it does not necessarily mean bad news.

Take someone with you and a notepad for them to write down notes. You are given so much information, it is difficult to take everything in particularly when you are anxious.

Be prepared to talk about poo a lot! The embarrassment soon disappears.

Ask any questions you need to and don’t be afraid to ask for things to be repeated so that you understand fully what is going on. The oncologist knows it is a lot to take in and wants you to feel calm and in control.

Try not to worry too much about potential side effects. They have to tell you them all just in case but you may suffer some, none or loads. You won’t know until you actually start the treatment and the nurses/oncologists will help you deal with them in any way they can.

Take it one step at a time and try not to look too far ahead. You will cope however scared you are.

Grab any perks that you can, they are few and far between!

Recovery time - moving on from surgery.

Recovering from major surgery (bowel reconstruction) takes time and patience is needed! We all recover differently from surgery – some seem to bounce back; others need longer but no one should feel pressured - it is very much a case of being sensible, doing what you feel you can do and perhaps setting yourself small goals when you feel up to it.

It is important to start eating, little and often to build up strength. My appetite was still rubbish for a week or so and I went with what I felt like eating not with what was healthy. It is also a good idea to introduce certain foods slowly. Eating sweetcorn within a week of surgery was probably not one of my better ideas!!! Pottering about is good, just don’t expect to be doing anything too quickly - the gym can wait for a while! The worst thing can be just getting up and out of a sofa or a bed. I found that each day I was able to straighten my body a little more and felt more comfortable. I also started taking short walks though I was nervous to go out by myself. To begin with I took someone with me, the logic being that if I got too tired or couldn’t go any further, my companion could return home for a car and pick me up. But each day I tried to go a little further and found areas in the village where there were chairs so that I could stop and rest should I feel the need.

Brain wise, I couldn’t focus on anything much – puzzles were out of the question as my brain couldn’t compute what I was supposed to do, I just watched TV or scanned a newspaper. I don’t know if that is usual or not but my attention levels and focus were pretty useless. My appetite returned fairly quickly and I was happy to potter about the house and garden, gradually taking on small jobs that didn’t involve lifting or stretching.

Getting used to using the toilet again takes a little bit of time, but be patient. Sometimes you don’t get the urge but feel you ought to go, so don’t delay! Listen to your body and act when you need to and things will soon sort themselves out. When I went out, I needed to know where the toilets were for peace of mind though I never got to the situation where I desperately needed one. It was just anxiety and for a while I carried spare clothes around with me too. Thankfully that concern didn't last long.

The main worry at this time for me was waiting for results. I had been told that the operation had gone well and that all visible signs of cancer had been removed, but lymph cells were taken to test for signs of cancer, plus blood tests etc. The results finally came through via a phone call from a cancer care nurse and that was tough. It felt like the rug had been pulled out from under my feet yet again. I was told traces had been found in 2 lymph nodes and my anxiety levels rose instantly even though I was assured that was good news. In my mind, it wasn’t, the cancer was still present. I was told that I would be seeing an oncologist at the end of the month and that chemotherapy was the likely next step and I found that very hard to take. I was hoping, and had been led to believe, that surgery probably would be enough and I was terrified of chemotherapy having heard lots of horror stories. I must admit to being rather weepy and emotional for quite some time which was understandable but not helpful. It is such a rollercoaster of emotions that other people find it hard to understand unless they have been through something similar themselves. The mind goes haywire, thinks dark thoughts and it is difficult to shake those off even though you need to, to help your recovery.

I was also told I would be under surveillance for 5 years which I found horrifying too. Blood tests, scans, colonoscopy – all the stuff I didn’t want to go through again. It is meant to be reassuring and to give peace of mind, but at this stage, all I felt was that every twinge, every ache or niggle would make me think that the cancer has returned and I know that the build- up to those tests is going to be a tricky time. The cancer nurse explained that the chemotherapy I would likely have was classed as a ‘curative’ procedure to mop up anything that had been left behind. She was very reassuring, very calm and didn’t mind explaining to me again when I got upset and found it hard to take everything in. In my case, chemotherapy is standard procedure but it would ultimately be my choice whether to go ahead or not and something to discuss with the oncologist. According to her, I was in the best possible situation at that moment. It is hard to see that sometimes but if I stop and truly think, I do know that I have been exceptionally lucky and it could have been a lot worse. I was still very much taking it one day at a time and dealing with the here and now, trying not to look too far forward and trying not to worry in advance.

My Tips (This is what helped me, remember you may be different. Do what is right for you!)

· Do things at your own pace. You know your body best and what it is capable of. If you don’t feel up to something, then leave it for another day, there is no rush.

· Take any offers of help that you are given. People want to help, it is kind of them to offer and it does make your life easier

· Keep using sudocrem and moist wipes whilst your new bowel is sorting itself out. It will make you feel much more comfortable.

· Keep taking the painkillers as they will help you recover quicker and wear those stockings even when you don’t want to. Make them a new fashion statement!! I looked very odd when I went on holiday but it doesn’t matter in the slightest, your health is more important.

· Try new foods in small amounts to make sure your new bowel can cope with them. I was told I could eat anything I wanted to, but sweetcorn and nuts were not good choices for a few weeks.

· Speak to the cancer care nurses. Tell them your fears and worries. Ask them to repeat information and make notes that you can refer to later. It is difficult sometimes to take in the relevant information when you are maybe still feeling unwell or frightened, so it is good to have something to refer back to.

· Trust the medical staff when they say you are doing well, in a good position or on the mend. A positive mindset is such a powerful thing and will ultimately quicken your recovery.

· Enjoy the opportunity to take life slower, to rest and relax without feeling guilty!

· DO NOT listen to horror stories. Everybody’s experiences are different and everybody reacts differently.

Take each day as it comes and deal with what is happening at that point. If you can cope with that and not look too far forward, you are likely to recover so much quicker and be in the best possible place for the next step. If you are on a similar journey, I wish you well. You will get there!

So what happens after surgery?

The first few days and the first steps towards recovery.

It’s always a relief to wake up after surgery and know that you are going to be ok! Abdominal surgery is never easy and any movement is painful. Movement is restricted anyway as you are hooked up to various drips and have a catheter for several days but be warned, they do get you up and sitting in a chair as soon as possible! In my case, it made me feel very sick pretty quickly but there is medication to help prevent that. Ask for it if necessary. Getting up out of the bed was also a major feat, despite support on both sides and a mattress that moves to help - it is still hard work on a very sore tummy area.

There is plenty of medication available and I would advise taking whatever is offered! Now is not the time to be stoic! I was asked to use my breathing gadget early on and couldn’t make it work as deep breathing was painful, so medication was increased quite substantially and it certainly made a difference. For a few days sitting for any length of time was uncomfortable and I spent a lot of time dozing, presumably from the pain killers I was taking as they were pretty strong.

It is nil by mouth for a couple of days also but to be honest I had no appetite or inclination to eat. Coughing is hell and sent my shoulder into spasm – far worse pain than my surgery sites – 4 small cuts around my belly button. I had a sneak peak and although covered with plasters, I could see how bruised I was so it was no wonder that it was uncomfortable to bend. What helped me was a tightly rolled up towel, secured with tape which I held to my stomach as I lay, sat and tried to move. It really did help and I continued this when I finally returned home for a couple of weeks.

You are also on daily injections to help prevent blood clots and wear surgical stockings permanently. They teach you to do the injections yourself for when you return home and they are either in your thigh or your stomach. I decided that with all the bruising I would rather avoid my tummy area and go into my thigh. You get used to doing it pretty quickly though I won't say it is an easy thing to do!

Scarily, there is no control of your bowels in the immediate aftermath of surgery. I was told that the bowel goes to sleep when touched during surgery and that by making you get up and walk around you are actually getting it to work again. However, when it does work you have no idea, which is not pleasant, but just one of those things. You are aware that something is happening but have no sensation or control for a while. That is slightly terrifying, but have faith, it will get better.

When they do start allowing you food it is soft stuff: soup, ice cream and mashed potato, none of it particularly inspiring but easy to swallow and digest and something that your new bowel can cope with. Sometimes your throat can be sore too from the various tubes inserted during surgery. Delightfully, they usually give you a suppository after a few days to stir your bowel into action so be aware that a disturbed and unpleasant night awaits!!

Hospital stays can vary from 3 days to a week or so. In the end I was there for 6 days and because of the pandemic was only allowed one named visitor on a couple of days. A deep cleansing of the ward meant no visitors for anybody and sitting in another room for hours on end which was torture.

I took in a fair bit of stuff to do whilst I was in hospital but apart from trying to read the newspaper each day, I mostly just slept or chatted to other patients, with little energy or inclination to do anything else. Taking a phone with a charger was great as I could contact people and receive messages of encouragement which were a huge help. (I have some great friends!) Sometimes I only felt like sending an emoji, but it was good to read words of support. My book was unopened as I couldn’t focus on anything for very long. There are frequent visits for blood pressure, pain relief, catheter monitoring, the surgeon, anaesthetist, various nurses, health care assistants and in my case checks from various people for a couple of projects I had been asked to sign up to. One was testing different types of care in theatre to help prevent infections so my wounds had to be checked. I wasn’t told which method was used in my case but my wounds healed quickly. No stitches as far as I know!

Getting the catheter removed allows more freedom for moving around and attempting to use the toilet but it takes time for everything to start working as it should. It may be uncomfortable for a while, unpredictable or unsuccessful – try not to stress about it and be prepared. When you are finally discharged you are given strong painkillers to take home with you, a months’ worth of injections for blood clot prevention and spare support stockings as you have to wear them for 8 weeks (not great in a heatwave, but did become a new fashion statement!)

It is a big step – things are still probably not working properly, you have little or no appetite, movement is limited and yet they send you home to get on with it by yourself. In my case hubby was banished to the spare room so that I could prop myself up with pillows, my rolled-up towel and anything else I needed to make myself comfortable in bed. It was a huge help and meant I got a fairly decent night’s sleep. Taking the pain killers regularly was a must (whether I felt I needed them or not) and attempting tiny amounts of food was a necessity but do things at your own pace. I slept a lot in the early days, wiped out by the medication and just needing time to recover and spent most of my time watching TV, but each day there will be some small improvement. You are now on the way to recovery.

Tips:

· Take any painkillers that are offered, they really do help you to get back on your feet more quickly. If they are not strong enough then speak to the nurses who can try something else or increase your dose. It is essential that you can take deep breaths to avoid pnemonia.

· Take in some moist toilet wipes and sudocrem which will help to make you more comfortable after frequent trips to the toilet.

· Use a rolled-up towel for support on your stomach when you are sitting, coughing or trying to move.

· Rest, relax and drink plenty of fluids

· Take in some loose-fitting clothes for coming home, no tight waistbands or anything that will rub. Elasticated waists come into their own at times like these!

· When you get home, allow people to help you so that you can focus on getting better.

· Introduce new foods when you feel up to it, but do it slowly to ensure that your new bowel can cope.

· Have some disposable bed mats at home to give you peace of mind at night until you feel comfortable that your bowel is working once again

 Remember, however uncomfortable you are or however much pain you are in, it WILL get better!

Take it one step at a time and do things at your own pace! We all react and heal differently.

Surgery Day

What may happen on the day of your surgery.

(please remember that these thoughts are what I recall of my own experiences. Yours may be entirely different but some things may help you prepare for your own surgery day.)

Surgery day. It seemed to come round rather too quickly and since I wasn’t given much notice, I didn’t feel very prepared. However, maybe having so little notice helped me keep calmer than I would normally have been!! Had I known for a long time in advance, my blood pressure and nerves would have been through the roof!

For me, it was an early start as I had various drinks to consume before my surgery. I wasn’t clear what they were for, or perhaps I just didn’t take that information in, but I think they were to give me energy as I wouldn’t be eating for a few days and to clear my system out to make surgery easier. Getting up so early wasn’t great but the hospital had asked me to arrive by 7.30am to get all the pre op stuff done. Being in a pandemic, I was left alone at the door, shaking in my boots. I’ve not had many stays in hospital so I was petrified and knowing that it was major surgery, a long recovery time and not entirely sure what I was dealing with didn’t help.

There were lots of ladies arriving at the same time, all of us sat in a room with plastic screens between us. Height and weight were taken and then reams and reams of paperwork. It seemed never ending and was very repetitive but is necessary to make sure everything is correct. Some was with a nurse, some with the anaesthetist. The risks were read to me several times – not great for my ever increasing nerves! I also had to sign for various different forms of treatment as they were unsure what they would be able to do or how to do it until they opened me up. That’s a scary thing too – giving total control to someone else and having no idea what they are doing until afterwards – keyhole surgery or open surgery, stoma or no stoma …. Basically, you just have to sign the paperwork and hope for the best!

Despite being there so early, I was third on the list and not due to be taken down until lunchtime. I watched many other people get changed into their robes, put on their delightful white compression stockings to help avoid blood clots and be walked out the door, but I remained in my seat until I was the last one left, unable to focus on my book or concentrate on anything except breathing calmly. Eventually it was my turn to get changed but no white stockings for me, I was special! As my procedure was more major, I was to have something different that would be fitted in theatre.

At 1.30pm I was finally collected by a lovely young lad (he only looked about 16!) who escorted me in my robe, dressing gown and slippers, through the corridors, to the lift and down to theatre. He was so kind and gentle, chatting about everyday stuff as he could see how nervous I was getting, but by the time I arrived at the theatre door, I was beginning to panic and feel overwhelmed. The room looked like a combination of a warehouse, death cell and a science fiction movie - looking both bare but also full, with equipment, wires, beeping sounds and people, so many of them. The theatre nurses Mia and Kirsty were amazing. I shall be forever grateful to them. They were quiet, smiley, reassuring and gentle. They introduced everyone, explained everything to me, didn’t rush me and one of them held my hand throughout – it is amazing what that very simple gesture meant and did for me.

The anaesthetist also explained everything fully before starting his procedures. I had cannulas inserted into my hand, arm and wrist and a spinal block to add direct pain relief. That included having what felt like ice cold water being thrown at my back, the needle inserted and then the water effect again. Almost immediately I could feel my legs going numb. It is a weird feeling and also scary as you know you no longer have control of your body from the waist down – no chance to run away at that point! I also had vibrating inflatable wrap around things on my legs. Then the mask, told to breathe in deeply and out!

By 5.30 pm I was in a recovery room and then taken to a ward. I was told that surgery had gone well and was quicker and easier than anticipated. I was of course doped up to the eyeballs and not entirely sure what was going on but it was over. And I had been lucky – keyhole surgery, no stoma, and all visible signs of cancer removed – the best possible outcome. Although hooked up to various drips and with a catheter in place, and despite being in pain, it was a huge relief.

Tips

· Take something simple to keep you occupied in the long wait before being taken to theatre, whether it be a book, magazine, puzzles or your phone. Messaging friends who knew I was terrified and receiving their encouraging words was a huge help. I have some great friends!

· Pack all the belongings you will need for your hospital stay into one bag. This is labelled and delivered to the ward on your behalf. Having lots of separate bags could mean that something gets lost or misplaced.

· Tell the nurses if you are scared. They are incredible at putting you at ease or at least helping to keep you calm.

· Ask questions if you want to – the nurses and anaesthetist will answer and explain as much as they can to make sure that you are ok with the procedure

· Take any pain relief that is offered to you. Don’t be brave and try to do without. The aftermath is painful, there is no denying it, so getting your pain relief right makes a huge difference to your well-being and recovery

· Enjoy the fact that the surgery is over. You are now on your way to getting better!

If you are heading on a similar journey, have faith. I wish you well.

POT – Pre op time!

Preparing for surgery.

I was quite glad that I didn’t get much notice of my impending surgery because I knew that I would get into a dreadful state of anxiety and work myself into a complete state of panic. With little notice, I managed to remain quite calm as there was a lot to do in the few short days I had. Whether this was due to the urgency of my condition, the availability of the consultant/theatre time or the pandemic, I am not quite sure. The pre op was a new experience for me and very different to the experiences of friends going through different types of cancer treatment. As such, this is an account of my experiences (what I can remember) of a pre op in Covid times, in preparation for the removal of a bowel tumour. If you find yourself in similar circumstances, this might help give you an idea of what might happen.

I can’t recall having a pre op before so I didn’t know what to expect. I had spoken to my consultant on the Thursday and had immediately gone into isolation in preparation for my surgery because of Covid, but on the Monday I was needed at the hospital for pre op testing. All I knew was to turn up in loose clothing/sportswear and that it would take most of the morning. That set my blood pressure rising instantly. I had no idea what to expect and couldn’t imagine what would take so long.

I was greeted by a doctor and a nurse who were with me for the entire morning. There were the usual questions to answer, height, weight, blood pressure, oxygen level checks etc and then I was given a mental ability test. Not liking the word test at the best of times, my mind went completely blank instantly! I was told 3 words and asked to remember them. No chance! Within seconds I had forgotten one of the words! I had warned them this would happen but hadn’t realised it would happen quite so quickly. Thankfully at the end of the session they told me what the missing word was or I would never have got to sleep that night. Several months on and I can quite easily recall that it was deckchair – probably something I will now remember forever!

Next, I was asked to draw a circle, write the numbers as if it was a clock face and mark the time as ten to eleven. This made me chuckle. It seemed a bit strange as I remembered my parents telling me they had done something similar for a test on dementia, but it was also a bit odd as I couldn’t work out why the test was relevant. I didn’t want to be told I had dementia as well as cancer! It is a simple task but try it yourself under duress and you will soon begin to question yourself. Are the numbers in the right place and evenly spaced? Which hand points to the 11? Is the minute hand or hour hand the biggest one? Silly worries which did nothing to help keep my blood pressure down.

I was then hooked up to an ECG machine to check my heart rate, given a peak flow mask to check my lung function and asked to get on an exercise bike. Using the mask wasn’t easy – it was like a snorkel which I have never tried before and was difficult to hold steady in my mouth. I had to cycle for 15 minutes at a minimum rate that the nurse gave me. I had no idea at first why I was doing this but apparently it was to see if I was likely to need intensive care support after surgery or a high dependency unit before moving onto a normal ward. My other friends going through cancer treatment didn’t have to do any of this so perhaps it was because I was having more intensive surgery, I really don’t know. As for my heart rate, as the ECG machine kept cutting out and wasn’t working properly for a while, I am sure it must have been rising due to the stress of it all and having to cycle longer than the usual time to get the full reading. I was quite relieved that I had been fairly fit before diagnosis otherwise the cycling would have been a lot harder work.

There was a load of information to be given on the various drugs, drinks and injections that I was going to be taking home with me. These were to help prevent infection and blood clots but it was a lot take in and highly confusing. Thankfully it had all been written down for me with clear instructions on what to take, how to take it and when to take it. I had apparently ‘tasty’ drinks to help build me up as I wouldn’t be eating for a few days (though it turns out the doctor had never tried any before, something I really think she ought to have done before telling me how nice they were!), drinks to help clear out my system pre surgery, an injection to take and baby drops of some kind to settle my stomach – the list seemed never ending.

Swabs were taken from my nose, mouth and groin to ensure I wasn’t carrying any infections and yet another Covid test was done, followed by more blood tests. To be honest I can’t remember why, by now I was in a daze.

The doctor was very encouraging. She felt that I was in a good place and there was nothing to suggest that there would be unexpected problems. I was given a gadget to play with, a plastic box with 3 tubes containing a ball in each and a mouthpiece attached. I had to suck on this several times a day to try to get all 3 balls to rise to the top – a bit like a child’s game but sucking instead of blowing. This was to help improve my lung function which didn’t seem to be doing too well at the time. Getting the balls to the top actually took an awful lot of effort!

Pre op medicines are given free so I collected my rather large bag of goodies at the hospital pharmacy and in a state of shock returned home to begin taking the preparations immediately. There were a number of creamy drinks to take over the next few hours – a kind of tropical flavour which was bearable but not delightful, certainly after the first two! These were to help build me up and provide me with nutrients that I would miss after surgery as I would be nil by mouth for a while. The other drinks were a kind of lemonade flavour but were pretty awful. I suspected they would clear out my system very successfully!

The day before my surgery was filled with yet more drinks, baby medicine and an injection that I had to administer myself. I didn’t find that easy but knew that I had to get used to it as I would be self-injecting for 30 days after surgery to help prevent blood clots. And then it was time to rest before heading to the hospital.

It can be a scary time. There is so much to remember. There are correct timings to follow but it is ok. Whatever you are asked to do is to help you be in the best place possible before surgery. Go with it, trust the medical staff and know that you are giving yourself the best chance of recovering swiftly.

Tips:

· Do not be afraid to ask the medical staff to repeat instructions so that you understand them fully.

· Try not to worry about the testing procedure, they are making a judgement from those, from your health background and from chatting to you. If you forget a word for example, they are not automatically going to announce you have dementia!!

· Get everything written down for you so that you can look at it again when you are feeling calm. There is nothing worse than getting home and suddenly not being able to remember what to take and when to take it.

· Trust that the medical staff are doing everything they can to ensure that you are in the best place for surgery

· Try not to worry – easier said than done!

A testing time ..

I’m not one for the Doctor’s so my experience of medical procedures in general, is pretty limited. Being put forward for a raft of investigations prior to my cancer diagnosis and then to confirm it was indeed cancer, was a very testing time. Add in a pandemic with the necessary Covid testing and isolation periods prior to surgery and you can understand why my anxiety levels went through the roof!

I am a natural worrier. I am scared of medical procedures, mainly because I don’t know what to expect. I have also been told many horror stories! These are not helpful so please do bear that in mind if you know of somebody going through a similar procedure to one you have had yourself. Below I will outline some of the procedures I experienced, what they entail and how I felt about it, in the hope of alleviating fears you may be having.

All cancers are different. All are treated differently and all involve different investigations. These are experiences I undertook towards a diagnosis of bowel cancer. Your investigations may be completely different but hopefully you will realise that whatever tests you have to go through, they are NEVER as bad as they are in your mind!

Blood tests: a tight band is placed around your arm; a needle is swiftly inserted (usually in the elbow joint) and various tubes of blood are taken. It is quick, not altogether painless but minimal – perhaps just a bit uncomfortable when the needle is inserted. I prefer not to watch the process! You are given a cotton wool ball to press on the site and it is over. The worst bit for me was taking the surgical tape off afterwards!!

ECG: a quick and simple procedure to check your heart rhythm and electrical activity. Various sticky pads are attached to your chest, side and legs and attached to a machine. There are no special preparations, you can eat and drink as normal and it is over in minutes. The worst bit is removing the sticky pads again. I really do not know why I was so worried about this one! Tip - wear loose clothing so they can access you easily, including your ankles, then you don’t have to wear a hospital gown.

Echocardiogram: like an ultra sound and enables the operator to take pictures of your heart and to listen to the individual chambers. My operator was brilliant at explaining everything and put me at ease very quickly. Clothes from your top half are removed for easy access, though you can wear a gown if you wish and you can watch what is going on, on the screen. I was warned that my heart would sound different in each chamber which was helpful and stopped me from panicking. It took a little while but was painless.

Pre colonoscopy/endoscopy: I was given information about avoiding certain foods for the week prior to the procedures and eating a bland diet. Various booklets were sent to me which explained everything I needed to know. At 3pm the day before it was no food and only clear drinks. That evening I made up a preparation that had been sent to me – 1 litre of a lemony scented drink, to be consumed within 2 hours. I am not going to lie – it tastes awful - a mixture of lemon and salt! I had to force it down at 15-minute intervals, so it did take the full 2 hours to consume. Other people manage to knock it back easily. It starts taking effect about 2 hours later – emptying your bowels fully and frequently. There was no panic though – my body gave me warning and there was no pain but be warned that it can be a strange colour! There may be blood if you have a tumour that has been bleeding and there will be lots of toilet visits!! Eventually it calms down and you can get to bed for some rest before getting up early to repeat the whole process. By mid-morning it is nil by mouth ready for the procedures themselves. Tip – invest in some moist toilet tissue and Sudocrem as going to the toilet so frequently can make you sore.

At the hospital pre procedures: basic checks – oxygen levels, temperature and blood pressure are taken plus the inevitable paperwork. A cannula is inserted into your arm which can be uncomfortable and tricky as you will be dehydrated. You are asked to change into a hospital gown (I kept my top half clothes on underneath) and some rather fetching navy-blue bloomers. If I hadn’t been so scared, I would have found it highly amusing! Tip – tell the nurses if you are frightened, they are amazing at reassuring and comforting you.

Endoscopy: I asked for sedation as this was the procedure that frightened me the most. I knew that a tube would be put down my throat and that terrified me. The sedation took effect instantly and included a throat spray which freezes your throat. This can be scary as you can’t swallow but I was warned by the doctor and was able to keep quite calm. A mouthguard is inserted into your mouth to protect your teeth and strapped around your head to keep it secure. I can quite honestly say I don’t recall much else as the sedation worked well. I remember being told it was all over and the nurse telling me that I had been asleep for a while. It probably only took about 30 minutes but I am not too sure.

Colonoscopy: The tube is inserted before you have time to think about it, they don’t muck around and had I been able to see ( I wasn’t allowed to wear my glasses) there was a screen so that I could look at my insides! I had been told that this procedure was really painful by ‘helpful’ people but it really isn’t, just a bit uncomfortable occasionally but that passed in seconds and was usually when they were going round a corner! A nurse held my hand throughout and talked to me constantly. Again, it only took about 30 minutes and was probably slightly longer than normal as they had found an ‘area of interest’ ie my tumour. You are then taken onto a recovery ward for the sedation to wear off. Blood tests were taken in my case to test iron levels and I was given water and a couple of biscuits before I got dressed and went to the recovery room to talk to the Doctor. Tip – breathe steadily, keep calm and try to relax as much as possible.

CT scan: You are advised not to wear any clothing with metal buttons, zips etc so that you don’t have to change into a hospital gown. I had to stop eating mid-morning and then drink half a litre of water just before the procedure. A cannula was fitted and then you lie on a bed to go through a doughnut shaped machine, holding your breath when directed to do so. A dye was then injected into the cannula which made me feel very warm, before going through the machine again. I was warned that it might feel as though I needed the toilet but that I didn’t and wouldn’t have an accident. It was a quick process and apart from the cannula going in, wasn’t painful. I then had to sit for 15 minutes before the cannula was removed just to make sure there were no after effects with the dye. The only downside of this procedure was not being able to drive afterwards. Tip – take something to eat on your way home to avoid getting wobbly.

What have I learned from these tests?

· they are never as bad as you imagine in your head

· not to listen to people’s horror stories beforehand because it magnifies your fears and scares you when there is no need to feel this way

· the nurses who carry out these procedures are used to people feeling nervous or anxious and are brilliant at putting you at ease

· they are a necessary part of the process to finding out what is wrong, so that you can start to get better

· you can and will cope with them all – because you have to

· we are all stronger and braver than we think we are

For those who will be undergoing investigations, whatever form these may take:

Do not be afraid. Talk to those who are looking after you. Ask any questions that you need to before the procedure takes place. Breathe deeply and slowly.

You will be fine! And remember, the sooner you know what is going wrong, the sooner you can start putting things right again.

What do I say? When do I say it?

Telling people you have cancer is not an easy task. It is hard enough to accept the diagnosis when you are given it, but to then verbalise it is just weird. In my case, it felt then and still does, that I am talking about someone else, not myself. It just feels so strange to say, Hi, Just thought I’d ring and tell you I have cancer!!

In my case, I knew that cancer was a likely diagnosis in May after a colonoscopy and I chose to keep it secret from everyone, apart from my husband and two particular friends, until the news was confirmed. I wanted to know exactly what I was dealing with. I knew that once I started telling other people they would have questions, particularly my family and close friends. It felt important to me to have the full facts, to have time to accept them and to feel in control of my emotions before I passed on the news. I visited my parents in that time, my first visit since Christmas, and I desperately wanted it to be a happy visit so kept the news to myself – a secret I never thought I would have to keep. It was tough but I am glad that I made that decision.

The problem I had was that I was only given 6 days from confirmation to surgery and because of the pandemic I had to go into immediate isolation. Ideally I would have travelled to my parent's home (100 miles away) to speak to them and my sister in person, to show them that I looked well and was feeling strong and that I could do this. Instead I was having to call them by phone instead. The first decision was, who do I speak to first? My sister? Or my parents? In the end I chose my sister and then rang my parents immediately afterwards so that they all knew on the same night and could contact each other to talk if they felt the need to do so.

To be honest, I can’t remember what I actually said. I think I was very matter of fact. I think I was very positive. But at least I was armed with certain vital bits of information. I knew that I was due to have surgery, I knew the approximate size of the tumour, I knew what they hoped to do but I also knew there were no guarantees. I hope that I didn’t frighten them too much but I was also well aware that we as a family have been touched by cancer before and the outcomes were not what we wanted, so the news would have been scary. They were all calm and supportive and encouraging on the phone, but I know they would have been upset.

Telling my children was even tougher. They are all adults but that doesn’t make it any easier. No one expects their mum to say they have cancer, the prognosis is good but nothing is definite. I chose to speak to them all individually and again took the practical route. That seems to be the way I have dealt with everything since diagnosis – stuck to the facts and not googled or deviated from what I have been told. It wasn’t easy.

That time is all quite blurry in my mind now and the news spread far quicker than I anticipated which I suppose is to be expected living in a small village. I chose to tell a small group of people: close friends and members of the various clubs that I attended, to explain that I would not be there for quite some time and why. And the news just spread like wildfire! I had people I barely knew coming up to me in the street offering their sympathy or asking questions, unexpected calls and messages. Whilst it was lovely that they were being kind, it was also very hard to hear the fear and the pity in their voices when I was working so hard to keep my own emotions under control. I hadn’t wanted the news to spread that far and that fast but at least it saved me repeating the whole story many times! One has to look for the positives.

My advice to anyone in a similar situation would be:

· Put yourself first and do what is right for you. If you want everyone to know then that is fine. If you would rather keep it to family and close friends, that is fine too. I would just say choose carefully who you want to tell so that your news is kept quiet until you are ready to make it more public.

· Choose your timing. Do you want people to know straight away or do you want to wait until you know exactly what you are dealing with?

· Be open and honest but just give the amount of information that you want to. If you don’t want to go into personal details then do not feel that you have to.

· Children, particularly young children, have a habit of asking the most difficult questions. Will you lose your hair? Will you die? Give them the information they need calmly and simply in a way that they can understand. If you don’t know then say so, but try to alleviate their fears. Young children don’t need all the facts so give them what they need to know so that they won’t be frightened if your hair suddenly falls out or you are being sick.

· Once you have given the news, try not to worry about how other people are feeling but focus on yourself. Deal with things in your own way and put yourself first for once!

It is your cancer, your body, your decision, so do what you want to do.

Why me? How me? Why not me? 

I can honestly say, hand on heart, that when I was told I had cancer I never once thought ‘Why me?’ There has been no self-pity, no feeling of unfairness, just an acceptance of the facts and the need to get on and deal with it. There has, however, been a lot of time spent trying to understand it. So for me the question has never been why me, but how me?

Don’t get me wrong. I am no angel when it comes to eating healthy foods all the time and being super fit. I love chocolate as those who know me well will testify, I rather enjoy a bit of cake every now and again and if I got to choose between a healthy option or a sweet option, I would more than likely opt for the latter. But, prior to my diagnosis – I rarely drank (an occasional glass of wine), I didn’t smoke, I was exercising regularly and I hadn’t eaten meat products for over 40 years, so the How me? question is very relevant.

I can only speak from my own experience, every cancer is different, has different triggers and different symptoms and everyone reacts differently, but for bowel cancer, those most likely to be affected:

· are 60 years+ (6 out of 10 are over the age of 70)

· eat too much red or processed meat

· are overweight or obese

· do not exercise regularly

· are smokers

· are regular drinkers

· have a first degree relative affected by bowel cancer.

In my case it appears to have just been a case of bad luck – some defective gene.

The more pertinent question is maybe Why not me? It is a scary fact that 1 in 2 of us will be facing a cancer diagnosis at some point in our lives. It is a terrifying thought and one I was aware of but not really thought of in any great depth. With statistics like that, it is a case of how not me? Or why not me?

I have no wish to scare anyone, my wish is just to make you AWARE. This disease can hit anyone without warning in some cases. In my case, my tumour was likely to have been present for at least one if not more years and yet I was totally unaware. I thought I was fit and healthy. Looking back, there may have been little signals that I didn’t take any notice of. Being a fairly healthy person, an off day, an odd twinge, a strange sensation was brushed off – it’ll be gone by tomorrow, and it usually was. I never connected them and as I didn’t exhibit any of the major symptoms of my particular cancer, I didn’t act on them either. When I did, I faced the problems many did during the pandemic – doctors were not doing face to face appointments so it took some months before it was realised that there was something potentially serious going on. By then, I was at the point of giving up and would have ultimately ended up in a much worse position than I did. Having telephoned, filled in online forms and spoken to a nurse/doctor on a few occasions, expressed my concerns and stressed I was worried, I didn’t know what else I could do.

So my message for this post is don’t be frightened and spend your days worrying you may have cancer, but be AWARE. Be AWARE of the various symptoms that generally mean something is wrong. Be AWARE of changes in your body. You know your body and its capabilities better than anyone so if something doesn’t feel right then the chances are it isn’t right. Keep a note of anything so that you can compare each time it happens. Check if there is any consistency or if things are getting worse. Be AWARE that you may not have any of the obvious symptoms for cancer (which will vary for each type). I didn’t! Be AWARE that in the majority of cases, symptoms are not indicating a serious problem like cancer but are worth checking out and be AWARE that you may need to be persistent in getting people to listen to you and organise the various tests/investigations needed to discount something more serious.

In the majority of cases, checks will show that you are ok. If they do not, then at least you have set the ball rolling and can start getting the treatment you need. Setting that treatment in motion means you are on the way to overcoming it!

Main symptoms of bowel cancer:

· Persistent and unexplained change in bowel habits

· Blood loss or in poo

· Unexplained weight loss

· Extreme tiredness

· A pain or lump in tummy 

Remember if you are experiencing any of these it does NOT mean that you definitely have cancer. But get yourself checked out to reassure yourself. There is nothing more scary than the fears in your mind I can assure you.

A rollercoaster ride

I’ve been asked by several people what it is like to be diagnosed with cancer and start the treatment programme, and the best analogy I can give is that it is like a rollercoaster! Sometimes there is a slow build up or a slow start, but once you are in the system, you move at high speed with ups, downs and many twists and turns along the way!

I’ve always hated rollercoasters. I hate the anticipation of a big climb followed by a huge drop, the whizzing speeds round corners, the sick feeling in the pit of your stomach and the fact that once you are on a roller coaster ride, you can’t get off! And to be honest, that is how I have found the whole cancer process.

I had a slow start to my roller coaster ride. I couldn’t get a face-to-face appointment with the doctor despite speaking on the phone, filling in online forms and seeing a nurse. The nurse did blood tests and gave me an inhaler to try as I was short of breath, but I couldn’t get to see a real live doctor. I’m not one for going to the doctors in normal circumstances, so the fact that I was asking for help and explaining that I was frightened should have rung alarm bells. But it didn’t.

After frequent messages and increasing concerns, my blood tests were repeated and that’s when my rollercoaster journey really began. My ferritin levels were almost non existent and I was asked to go to the surgery as soon as possible where I underwent some physical examinations and answered lots of questions. A heart murmur was discovered (likely due to lack of iron but needed checking) and I was referred for further more intensive investigations. I was now sitting in the rollercoaster, strapped in and heading towards that first big drop!

The speed with which things happened after that was quite shocking. As a person who likes time to think things through and work things out, I was suddenly plunged into that first downward dip and approaching the various turns in the track.

Within 2 days I was having an iron infusion, followed three days later by an ECG. Within three weeks I had an echocardiogram, endoscopy and colonoscopy. I was now well and truly on that ride and at that point I hadn’t even been diagnosed!

The speed increased during the next part of my ride. A CT scan followed by a meeting of the MDT (multi-disciplinary team) and an appointment with a consultant that confirmed the diagnosis. I assumed it would take time to organise surgery or whatever was needed and hoped to be able to hit the pause button for a while, but no such luck. Within 6 days and following various booking in/preparation procedures, I was in hospital and undergoing major surgery.

The rollercoaster took a short break to allow for some recuperation but I was seen by the oncology department 3 weeks after surgery, paperwork discussed and signed 2 weeks later and the first chemo session booked for a fortnight after that.

And then, following the structured timetable of however many chemo sessions you are required to have, it stops suddenly, just like the rollercoaster ride. One minute you are moving at break neck speed through the system and then the brakes are applied and you come to a very sudden stop. You are told, that’s it. The end of treatment. It is over. And there is a weird mixed feeling in the pit of your stomach, and your mind feels frazzled as it tries to catch up with what has been happening, work out what happens next and wonder when or if normality will return!

The speed is scary but should also be reassuring. Once you are diagnosed you don’t want to waste time and the hospital and oncology department do all that they can to make sure that you are dealt with as swiftly as is possible.

When you first sit down at the start of the ride, you have no real concept of what is to happen - for some it is terrifying, but rest assured, that once the ride starts, you go with it and it hopefully becomes less scary as each stage passes. You accept what is happening and deal with it. And head towards the finish line.

I still hate rollercoasters and nothing will tempt me to go on one at a theme park, but despite my fears, I have coped with the cancer roller coaster so far, helped and supported by my friends and family.

And if you are in a similar position - you will too. Believe in yourself and the strength that you possess.

You can do it!

D Day - Diagnosis Day

No one can prepare you for a cancer diagnosis. And no one can prepare you for how you will feel when you are told you have cancer, what emotions will hit you, what thoughts whizz through your head, or how you will react. Diagnosis Day can hit you in so many ways. Nobody is the same. We are all different and we all react in different ways. Most importantly, there is no right or wrong way to react.

In my case, I had no idea I had cancer and it was not something I had really considered. I’d had a chest x ray and blood tests in January 2020 due to an ongoing cough I’d had for years that was getting worse. It was a perfunctory test for lung cancer so when the results came back clear with ‘no further reaction required’ I was happy and relieved and all thoughts of cancer disappeared. But my cough continued to get worse.

Even when they redid my blood tests and I had a phone call saying could I please contact the surgery, I needed to see a doctor as soon as possible, I still didn’t think of cancer as being a possibility.

I was put forward for further investigations and sent for heart tests, an endoscopy and a colonoscopy. I was terrified of the tests and felt they were completely unnecessary so when during the procedure I was told, 'we have found an area of concern,' I was shocked. Due to the sedation, the Doctor wouldn’t explain further but said he would speak to me in the recovery room once the sedation had worn off.

Sitting in the waiting room with a nurse, the Doctor walked in and asked ‘Is there anyone coming to take you home?’ and that was the moment I knew. He hadn’t said anything else and he didn't have to, I just knew that if he wanted somebody in the room with me then he was going to tell me I had cancer. The thought hit me instantly without warning. I had a very very fleeting moment thinking 'Does this mean I am going to die?' Various images flashed through my head and then I just felt completely disconnected from what was going on. I watched my husband walk into the room with an encouraging smile on his face and thought, he has got no idea what he is about to be told and that was what bothered me the most. How would he cope? Would he be strong? Would he ask questions? Would he be able to make sense of something that we had never discussed and I am sure had not crossed his mind at that point.

And after that, I remember very little. I was told I could ask any questions I liked; none would be considered silly. I remember asking 'Are you sure?' And 'how sure?' And the answer was 98% and I just accepted it. I felt quite calm on the outside but inside my stomach and brain were trying to make sense of what I had just been told. I had cancer. I didn’t know what would happen. I didn’t know whether I would be really ill, or die or be absolutely fine. Suddenly I was no longer in control of my life, the medical professionals would be controlling it for me. I was told I would get a phone call from a specialist nurse the following day who would explain everything to me, outline necessary procedures and detail the way forward and I nodded and walked out of the room and sat in the car and that was that. There were no tears. No why me? Just quiet and calm and utter disbelief.

D Day – the day I discovered I had bowel cancer. The day I gave control of my life to the medical profession. The day I didn’t really know whether my cancer was curable or not.

There was so much to think about but the only thing going through my mind was: I’ve got cancer. How can that be? How can it have happened to me? How can someone fit and healthy and who looks after themselves have cancer?

The reality is it could happen to anybody, it was just my bad luck and something I had to learn to accept and deal with very very quickly.

And surprisingly you do!