Anxiety … out of control?

Next week I have a procedure booked in.  It was slightly unexpected to be told I needed it, but after checking at the hospital I was reassured to know that it was routine – one of the checks I will have before I am discharged fully from oncology and declared cancer free. It isn’t a pleasant one but it is necessary. I know that. I understand that and yet …. I am anxious about it and my anxiety is fast getting out of control.

I’ve known about the planned procedure for 3 weeks - a phone call, a booking, a letter of confirmation and then a package in the post with all the prep that I need to take with the instructions. Everything is very clear and easy to understand. When I had this procedure for the first time, I was terrified. Once cancer was a possibility there was no messing around. I was booked in quickly for scans, blood tests and various procedures. Having never had them before, not knowing what I was facing and the sheer speed that things were happening, I struggled to keep my anxiety and worries under control. I was truly petrified of what was going to happen and what they might find. But the planned procedure for next week is not new. I’ve had it twice before. This time I know fully what is expected of me, what I have to do, when I have to do it and what the procedure will entail and yet, my anxiety is spiralling out of control once again.

It hasn’t been helped by being delayed. It should have happened this morning. Last week I put everything into place: I booked the necessary time off work; found somebody to drive me to and from the hospital, cancelled various appointments and informed a number of people to explain my absence. I then received a call to tell me that the procedure had been postponed. For some reason, all planned procedures that day had been cancelled. I’d spent a week worrying for no reason! And then of course, I had to undo everything, agree on a new date and start again.

Another week has passed and I still have 7 days before my procedure.  My stomach churns constantly, I’m feeling under the weather and I’m noticing symptoms that may or may not be there! And my worries continue to increase. From Sunday I start a fibre free diet which as a vegetarian, does not leave me many options! I’ve checked the list I was sent and stocked up on custard, white bread, noodles, cheese, ice cream and eggs.  I’ve read and re read the letter which tells me all the timings: fibre free or white diet from 5 days preceding the planned procedure, fasting from 1pm the day before, water and colour free squash from this time, first prep taken at 4pm, second dose taken at 8pm, no liquids from 8.20 the following morning… not pleasant, not easy but supposedly manageable. I’m a fairly sensible and practical person, so what is causing this anxiety and why am I struggling to keep it under control?

In my mind, there is already so much that can go wrong! I had never anticipated the procedure being cancelled or postponed – that was one worry I hadn’t actually thought about and I was lucky because I was told well in advance, before I had started the special diet or taking the prep – but what if it happens again? What if I have spent 5 days eating very little or have taken the prep which is not pleasant? What if I have already gone through the whole process only for the appointment to be cancelled again? And then there are the other worries.  What if I accidentally eat or drink something I shouldn’t?  What if I can’t manage to take all the prep? (last time it made me physically sick and I just couldn’t force the last glass full down).  What happens if I can’t find anybody to transport me to and from the hospital?  They don’t let me have sedation? They can’t get the cannula in? (I was so dehydrated last time, it took 4 attempts.) What happens if I am sick again when taking the prep and my latest worry, what happens if I get caught up in roadworks and am late for my appointment?

The roadworks are a new worry and may seem insignificant to others, after all, if you think you may be late you factor in extra time, that’s a given. I’m rarely late for anything. I hate to be late and always factor in extra time for unexpected eventualities, but in the case of these roadworks which have somehow sprung up on every road I could use to get to the hospital, allowing some extra time may not be good enough.  On day 1 of the roadworks, it was taking people over 2 and ½ hours to do a 20 minute journey. That thankfully has improved but without practising every day during the week, I cannot guarantee how long it will take me to get to the hospital. Some days when going to work, I have made it in half an hour, other days have taken nearly an hour.  My appointment is a Friday morning – will that be better or worse?  If I leave early will I miss the rush hour traffic causing massive hold ups or am I better going later and hoping the worst is over?  If somebody takes me, are they going to have to hang around, for potentially hours, waiting for me or will they return home and then get stuck in the hold ups again when coming to collect me?

And then of course, there is the one that worries me the most. What if they find something? I’m coming to the end of my 5 year surveillance but what if there is another tumour or area of concern and I am plunged straight back into treatment?  My worries just go on and on.

I know that I am letting them spiral out of control.  I know that it is silly to be worrying over a week in advance and yet I can’t help it. I can’t stop it, all I can try to do is calm myself down, think things through logically and keep my fingers crossed!

What I do know, is that this pre procedure anxiety is normal. I’ve spoken to other people and it seems most people go through it to some degree. Everyone reacts differently but it is perfectly normal to feel some anxiety, to have some worry and to have some trepidation before undergoing a test or procedure and this should give some reassurance. We’d be a little bit strange to feel totally calm all the time after all!

As for the other worries, I know that if I can keep myself calm and talk them through with someone else or even in my own head, that I can temper my fears a little bit and come up with some potential solutions.

If I make a mistake with the diet and correct it as soon as I realise, then I should be ok. It is going to be a tough and dull few days of eating but I can do it and if I am lucky, I might lose a couple of pounds in the process! The prep is horrible but this time around it is a different flavour so maybe it won’t be so bad and if I can’t manage it all, then I just have to do the best I can. I should be ok as long as I have taken the majority of it. I have time to find somebody to take me to and from the hospital and they can decide whether to hang around and wait or to go away and come back for me when I am ready.  I can allow extra time to get to the hospital even if I get there way too early or I can do a couple of practice runs closer to the time to see what the traffic build up is like and make a judgement from there. If the worst comes to the worst and the procedure is cancelled again, then that is out of my control. I will just need to pick myself up and start again, I must trust in the medical staff that there will be sedation available and that they are able to insert a cannula. I can’t do it myself and they are trained, so the likelihood is they will manage! And if they do find an area of concern, my greatest fear of all, then it is good that they have found it early because treatment can start swiftly before it spreads further.

Logically, I know the answers to all my fears. Logically I can explain and understand.  Illogically, I will still lie awake for hours worrying and sadly there is nothing anybody can say or do to stop that.  I just have to get on with it and think that this time next week, it will all be over and done with.

So if you are in a similar situation to me, see if these tips help you:

Know that you are not alone in your fears. Anyone going through a similar procedure is likely to feel the same way.

Know that fear and anxiety is perfectly normal, you just have to find a way to control it so that it doesn’t take over your entire life.

Fill the days before with nice things: a good book, a walk in the country, an entertaining box set, meeting with friends etc.

Tell your loved ones and friends so that they understand that it is perhaps not very helpful for them to eat your favourite foods in front of you when you are stuck to boring white unhealthy stuff!

Explain your fears so that those around you accept and understand if you are a bit grumpy or short tempered with them.

Make plans for your journey well in advance so that you know how you are going to get there and back.

Just do your best with the diet and the prep.  The more you can do, the better prepared your body will be for the procedure but you can only do what you can do.

Take a book or magazine with you as you are likely to be kept waiting for a while before and after your procedure and this will help keep your mind occupied.

If you have a planned test or procedure soon, I wish you all the luck in the world. Keep calm, keep breathing, talk to the medical staff around you and organise a treat for afterwards.  You deserve it!

Sending hugs and positive vibes to everyone in my position.

Update:  I got there very early despite the roadworks, my son kindly drove me and returned home until he was called to pick me up, the staff were wonderful and reassuring, talking through all my anxieties without making me feel stupid. the cannula was inserted despite the dehydration and although I spilled most of the first glass of prep because I was shaking so much i still took enough for it to work thoroughly. Most importantly, and the best news of all - NOTHING was detected! 

Coping with cancer deaths

And yet even though I knew all this and had seen her a few weeks before looking ill and suffering from obvious liver failure, it was still a shock when it happened. I’d been messaging her and getting responses and there were no clues that death was just around the corner and then the messages stopped.

Knowing someone with cancer brings death closer to you. Many cancers can be cured and that is amazing and wonderful, but many cancers have progressed too far and all we can hope for is time. And sometimes that time is just too short.

Many people who have cancer treatment will meet others during their treatment and in their recovery. They might be people having treatment at the same time as you. Sometimes you see the same people each time you go for chemotherapy and a bond builds. You don’t really know each other well but you have a greater understanding of how they might be feeling or what reactions they may have. You chat, offer support, advice and warnings of what may follow. It is natural. Friendships grow quickly during these times and are important as you know you can talk about anything and the other person will truly understand. It is sometimes easier to say things you may not share with the rest of your family and friends. In recovery, you may attend a cancer care centre where you can talk openly if you wish about your feelings and emotions. Tears are shed and accepted because those around you understand. New friendships form. You are surrounded by people who know what it is like, how you might be feeling, what you are experiencing and what you are scared of.

And it is inevitable that some of the people you come across on your cancer journey may not make it. It is desperately sad and it is very scary.  Why has their treatment stopped working? Why has their cancer spread? Why have they died?  And after those questions there often comes the terrifying and inevitable personal thoughts: Will my cancer spread? Will my cancer return? Will my treatment stop working?  It is natural. It is normal. It can take you to a dark place.

Some people will use these events to find out as much as they can about their own cancer and treatment – statistics, death rates, follow up treatment, side effects and so on.  Others will bury their head in the sand following the philosophy, what I don’t know won’t hurt me!  Neither way can be said to be the right way, nor any other view people might have.  Each cancer patient will need to find their own way, the way that they personally can deal with the death of a friend or acquaintance in similar circumstances.  But it is important to realise and understand that these deaths may cause a set back in your own recovery, even years down the line. It may encourage all your suppressed or overcome fears to resurface, it may cause you sleepless nights, it may have you imagining symptoms or attributing cancer to normal aches and pains and as a result it is important to remember that all of this is normal!

My friend probably died from liver failure rather than her cancer though it was the cancer and her treatment that caused it. I suspect she knew that her time was near. She sent me a voice mail telling me she had moved to a hospice for a few days. She was able to sound quite bright and I think she was reassuring me as she told me it was really lovely and she was ok. She said thank you and she said goodbye. I think she was telling me she wasn’t frightened. That she knew it was going to happen and she was ok. I may be wrong but I find that comforting.

In the past the word cancer was felt to mean an instant death sentence. We now know that many cancers can be treated and treated successfully, especially if caught early enough. We also know that people do die of cancer and that is hard for anyone to deal with but when you are plunged into the cancer world, the fear of death and actual deaths can seem to be engulfing you. It can and may affect you even more than a non-cancer sufferer. It is at times like these that our personal fears may grow out of control and need reining in, they may need us to seek reassurance and support and they may need us to hide ourselves away for a while as we adjust to the reality of living with cancer or following cancer treatment.

A fear of dying is a natural thought when you are given the shocking diagnosis that you have cancer. The reality is that you are likely to come across those that don’t make it but you will also come across many that do and go on to lead happy and fulfilled lives. I shall miss my friend so much. She helped me understand my symptoms and treatment; she gave me support when I needed it and helped me rebuild my confidence afterwards. Hopefully I reciprocated that support when she needed it.

Tips

Fearing dying when you have a cancer diagnosis is natural.  Speak to your medical team, family and friends about your fears.

Know that many people overcome their diagnosis and treatment and will have long happy lives.

Understand that not everyone does make it but that their medical team will have tried all avenues to extend their life as long as it is possible and wanted.

Fill your life with happiness and joy, however long or short it may be.  None of us know what is around the corner.

Grieve for lost friends but know that they would want you to move on with your life.

Don’t compare your cancer with all others – they are all different, as is the treatment available.

I will miss my friend, but I know that she would not want me to be worrying unnecessarily. She would want me to get on with life, to fill my days with love and laughter and to remember her when she was well and happy. And although I am sad I will do my best to honour that.

RIP my lovely friend.

Take advantage of any complementary therapies on offer to you 

Complementary therapies include a variety of different treatments which run alongside conventional medicinal routes. Although they cannot cure you, they can improve general health and wellbeing, supporting people through their treatment and helping them feel better able to cope. Therapies can promote relaxation and circulation, reduce anxiety and insomnia, ease fatigue and nausea and help you to find your own ways of coping with the effects of cancer. If nothing else, it is an hour away from everything else, to relax and switch off and just have time to yourself. Something we often find difficult to do as there are always too many other things which seem to be the priority.

Many centres will offer 6 free sessions so it is worth checking at your nearest one. Generally they prefer you to have a weekly session, but in some cases, like mine, they slot them in gaps between other clients or during cancellations.

Clients are advised to drink plenty of fluids before a session and to eat light meals. The first session will involve some paperwork to find out what stage of your journey you are at, treatment, medication and how you are feeling. This will help your practitioner to advise on the best treatment for you.

At my centre, the following therapies are available: aromatherapy, reflexology, hypnotherapy, Reiki, Daoyin Tao, Massage and Reiki Drumming.  I wasn’t particularly familiar with any of them so I trusted Sarah, my therapist, to choose what she thought I would benefit most from. In my case I was offered Daoyin Tao and Reiki Drumming.

At my first session, I was rather nervous as I didn’t know what to expect. I was taken to a small comfortable room and after our initial chat, was asked to remove clothing from my upper half and lie on a couch underneath towels and a blanket. My knees were slightly raised and as lying flat on my back is difficult for me, the head of the couch was raised slightly. The session began with some aromatherapy oils for me to breathe in and then the drumming. Reiki drumming is a vibrational therapy.  Sarah played the drum around my head and body and I began to try to focus on the sounds and vibrations. It is something that has been used in Shamanic traditions for many years to attain an altered state of consciousness. Focussing on the sound and vibrations helps you to relax and enter a semi hypnotic state.

The Daoyin Tao massage focusses on the head, face, neck, shoulders, scalp and ears. The idea is that the massage releases any trapped stagnant energy and restores balance throughout the body.  It is a gentle massage that draws upon yin and yang to create balance - helping you feel more at peace and free from worries.

Sometimes Sarah will use crystals which are placed on top of the body at specific points. Each crystal focusses on a different emotion and a different body part which again helps the healing process.

It is incredibly relaxing and although the therapy itself only lasts about half an hour, the effects can be quite significant. After my first session I could feel the tension in my body had eased, I felt light headed and I slept well for the first time in weeks. My focus wavered at times but the beating of the drum or the ringing of the sound bowl helped me to refocus and relax once again. I was amazed at how quickly the time passed and how quickly I had been able to relax – not something I generally find easy to do. Sarah has the quietest of voices during treatment so focus is essential to hear what she is saying – it is soothing, relaxing and peaceful.

Our talks before treatment are on how I am feeling that day, any aches or pains that Sarah needs to be aware of and what I hope to gain from the treatment. But she is also making me think what I could and should be doing once my sessions are over. Having that hour to relax and switch off is essential and needs to be factored into my very busy week. She tells me it is important to have time purely for myself and that it is nothing to feel guilty about and she is asking me to think what I can do following my six sessions. It doesn’t’ have to be grand or lavish, just something that is for me.

Following the session, you are advised to sit and have a drink in the centre before returning to normal life. That way you can ensure you are feeling well and ready and also continue that feel good emotion for a little bit longer.

Sessions are booked through your cancer care centre so pop in or ring to see if they can offer you any sessions and what is available. If you are booked in but feel unwell on the day you are advised to ring and cancel and if at any point during treatment you feel unwell then the process will be stopped. Ultimately, these sessions are about you and making you feel better so they will not continue if something is going awry.

I feel so grateful to have been offered these sessions and am now halfway through my set of six. Sarah has made me feel so comfortable and even on the days when I have cried through feeling tired and overwhelmed, she has put me at ease and helped me see that I need my own time. I can highly recommend them to anyone who is able to access them, even if like me, you have never had a massage or anything similar before.  There is no need to feel uncomfortable or embarrassed as your practitioner will do everything they can to make you feel at ease. Take the opportunity if you can.

Hints:

Wear comfortable clothing that is easy to take off and put on if you are having a massage

Wear shoes that are easy to slip on and off

Remove your jewellery

Drink fluids before starting your treatment (I didn’t one day and had a bit of a headache)

Take the time afterwards to relax before heading off to ensure that you feel calm, balanced and well

Focus on the treatment to help you relax and get the most out of it.

Enjoy being able to have a whole hour just for you!!

Catherine, Princess of Wales

and life after cancer

The Princess of Wales has been out and about a great deal recently, attending major events such as the Wimbledon finals and the state visit of President Macron. She always looks beautiful, calm and in control. When she recently failed to attend a planned visit to Royal Ascot there was huge interest and concern. Where was she? Was she ill? Had her cancer returned? Did she not want to be there? The speculation was endless as it always is, until there was a response from the Palace. The Princess was taking time for herself, adjusting her routine and ensuring that she paced her return to public duties to ensure that she found the right balance for her.

This is something that I have written about before but remains so very important. When cancer treatment stops, life DOES NOT return to normal immediately. It takes time. The public assumed that as she was in remission she would return to full Royal duties not understanding that the Princess continues to deal with the effects of her illness and subsequent treatment. I am a great fan of the Princess and the way she has spoken about her cancer diagnosis and treatment. When she speaks, people listen.  She can speak with full authority on what it is like having been through it all herself and each statement she makes helps others to have a much greater understanding of how it affects individuals. She quite rightly states that everyone’s journey is personal to them, but there are many similarities and life after cancer treatment is one of them.

In recent weeks she has spoken quite openly about her ‘life changing’ experience and how she has coped with the various challenges that life after cancer creates. She has told other patients that she is still adjusting to her ‘new life’ and that has been difficult not only for herself but for her husband, children and other family members.  Cancer changes you. It changes your whole outlook on life and although you may put on a brave face as most cancer patients do, the reality can be somewhat different when the full impact of what has happened hits you. (And that can be at any time!)

In her recent discussions, the Princess of Wales is very clear that the phase after active treatment can be particularly difficult and challenging. Your clinical team has withdrawn, you are told to get on with your life and yet life is very different to what it was. Mentally and physically you are still recovering. The effects of the chemotherapy or other treatments may still be coursing through your body leaving you tired and weak, your anxiety levels are probably off the scale and yet you are told to ‘crack on’ and get on with life. This is a time of a changed reality and a need to find a new balance between what you want to do, what you feel able to do and what you can do! It is all about pacing yourself, not trying to do too much too soon and that is why she is picking and choosing events to attend. If she has had a busy day she may choose not to attend the formal dinner.  If she has had a busy weekend, then the week will be quieter. It is necessary for her continued recovery and her mental wellbeing.

When treatment is over there is always a rush of relief. No more needles. No more infusions. No more sickness and so on but this can quickly be replaced with anxiety about the future. What happens next? When will I feel like me again? There is a long term impact that many people just do not understand. It is impossible to switch off from what you have been through and simple things may trigger forgotten emotions.  There are many physical and emotional changes to navigate.

Catherine has described her journey as being an emotional rollercoaster. Recovery is not a linear process - there are many ups and downs with prolonged periods of difficulties to get through, alongside many moments of positivity and great happiness. The impact of all this on the individual and on their families can be huge. Everyone is adjusting and finding their new norm.

I hope that the Princess of Wales continues to talk about her recovery, educating people about the process and the lengthiness of recovery time. Cancer is not forgotten.  Survivors can move on with their lives, they can find happiness and lead full lives but it is always there, at the back of their minds. There is always that fear that it could come back, so a greater understanding from family and friends can help this healing process significantly.

So, if the Princess needs to step back at the last minute from a public engagement, understand that she is still recovering and needs time to rest and replenish her energy. It is hard enough going through it all privately, but she has to do it publicly, with everyone judging her. She is doing an amazing job and I hope one day she feels able to tell everyone what cancer she has had because that too would benefit so many other people.

In the meantime, if you are through your treatment:

Take time for yourself when you need it. You do not need to make excuses. You know yourself best.

Don’t push yourself too hard too soon.

Be honest with people about the way you feel so that they can understand and support you where necessary.

And if you live with, work with or know someone who has come through treatment:

Don’t expect them to return to their pre cancer self immediately, if at all

Recognise that they are dealing with physical and emotional issues

Provide understanding and support where you can

Don’t put them under undue pressure

Accept that they may need to cancel plans with little notice

Neuropathy – what a pain!

(in fingers, toes and teeth!)

When you were going through treatment or if you are now, do you ever get that painful tingling in your fingers or feet? The feeling that they are doing weird things and just not right?  I certainly did and 4 years later still have it, or the effects of it, to some degree.

CIPN – chemical induced peripheral neuropathy is nerve damage caused by certain chemotherapy drugs. This can lead to feelings of numbness, tingling, pain and muscle weakness and occurs predominantly in hands and feet. It is a common side effects of chemotherapy especially with drugs known as neurotoxic agents which affect the nerves outside of the brain and spinal cord. It can be really mild with a little tingling or pins and needles but can also be far more significant with patients losing all feeling and control of their hands and feet. Sadly the chemotherapy kills off the cancer cells but also kills off healthy ones, including nerve cells, and that can be hard to accept – the medication you are taking to make you better is actually often making you feel far worse!

Neuropathy can affect patients during treatment or sometimes occur after treatment has finished and will affect 30 to 50% of those going through chemotherapy. Experiencing neuropathy can impact your quality of life so it is important to note all details during and after treatment and report back to your healthcare team. Good communication can mean that improvements can be made – no one wants to see you suffer when something can be done about it. Medication dosage can be reduced, different drugs can be tried and strategies for coping introduced. Any new symptoms should be reported to your team so that a diagnosis of neuropathy can be given as early as possible and steps taken to ensure it does not get too bad.

In my case I suffered more or less instantly. As the drugs took hold during infusion, my fingers would tingle. Washing my hands sent them into total spasm and I found it difficult to grip a pen, do buttons or even use the gear stick in my car. Getting something out of the fridge or freezer was impossible, as was walking in cold air or preparing cold vegetables for the evening meal. My feet became uncomfortable to walk on and in my case, my teeth were affected too. Despite being in a heat wave, there were no cold drinks, ice creams or frozen desserts as my teeth would react violently and my throat would feel like I was eating broken glass. The first time it happened, I was terrified but I got used to the signs and took steps to avoid it happening. This meant everything and I do mean everything, was microwaved first for 20 seconds!  Warm squash is a taste that takes some getting used to!

Symptoms can include a sensitivity to cold or heat, a loss of balance, difficulty with fine motor skills, muscle cramps and a general feeling of weakness.  Over the counter pain medications can help, as can taking steps to improve self care. In my case, that meant wearing a scarf or face mask when I was outside to keep my mouth protected, silver lined gloves meant I could handle food a little better and seeking help from others was very important. Even the shop assistant helped me out when I was unable to take my debit card out of my purse because my fingers just wouldn’t work!

If symptoms are severe, the medical team may consider switching, reducing or stopping the particular drug causing it. In most cases, neuropathy improves significantly or disappears after finishing treatment, but carrying on too long can cause a permanent issue as there isn’t a treatment to prevent or reverse nerve damage. The most effective treatment is to stop a particular drug but this can be tough to accept when you know the drug is getting rid of the cancer. If this happens to you, talk things through thoroughly with your medical team but be reassured that they will do what is best for you. Stopping a drug will allow the nerves to gradually recover or at least become less troublesome over time.

Sadly, doctors cannot predict who will be affected by neuropathy and they can’t prevent it from happening. All they can do is prescribe, wait and watch what happens, hence why it is so important to discuss any changes as soon as you can. On one of my infusions, I could feel my fingers stiffening and when I looked, they were forming the Star Trek sign with fingers fusing together! Had I not been rather frightened at the time it would have been quite funny. The infusion was stopped immediately and then slowed down, and my fingers gradually began to ease. Healing and recovering is not a fast process but in time it will improve, though you may never be 100% clear.

So if you are struck by neuropathy, what can you do to make things easier?  Here are my top tips:

Talk to your healthcare team!

Wear warm gloves and socks during treatment and after to help protect them

Wear gloves whenever you are working with your hands such as washing up or gardening, or do what I did and delegate!

Wear oven gloves to protect yourself when removing food from the oven.

Wear well fitting comfortable shoes or boots. Forget high fashion and focus on pure comfort.

Avoid walking barefoot and check your feet regularly, using moisturiser to keep them soft.

Test the water temperature before you enter a bath or shower to make sure you can cope.

Ensure rooms are well lit and clutter free to avoid falls if your balance is affected and use a support at night if you are feeling wobbly.

Leg exercises, support stockings and standing up slowly can also help with balance issues. Use an assistive device such as a cane or walker if necessary.

Access physical and occupational therapy or complementary therapies if they are available to you – these will help with strength, balance and co ordination and may be accessed through your hospital or local cancer care centre.

Be reassured that the symptoms will ease over time.

Four years on, I am still finding discomfort with my feet on occasion and my teeth which seem to have been quite badly affected. Being open and honest with my dentist is helping but something I am still working on. At times it is frustrating and depressing but I have to keep reminding myself that I currently have no signs of cancer which is far more important. With time, my teeth will hopefully be sorted so I need to be patient. I took up knitting to help my fingers work fully again, built up my walking time and started introducing finger and feet exercises. Work on it steadily and hopefully you will see improvements.

Neuropathy is difficult for other people to understand and accept as it is not visible to others. Explain your issues and how you are feeling and encourage that understanding to develop. This will help your friends and family to support you the best they can through this uncomfortable and painful time.

Wishing you all well on your journey. Sending positive vibes and good wishes to you all.

HOPE

Help to Overcome Problems Efficiently.

Have you heard of the HOPE course?  Your local cancer care centre may offer this service to you but it can also be done online if that is easier or more accessible for you.

Launched in 2022, this 6–8-week course available nationwide, was developed by Coventry University alongside Macmillan Cancer Care and is for adults aged 18+ living with or beyond cancer treatment.

The course is FREE and has been designed to support cancer patients in developing techniques and strategies to enable them to manage many aspects of living with cancer or following cancer treatment. People can be hit by a range of complex issues: emotional, physical, practical and psychological during their diagnosis, treatment and in the following days and weeks. the  The course, led by trained facilitators with a lived experience of cancer, will guide participants through a range of activities and discussions, helping them to learn how to relax, reduce stress, manage fatigue and improve confidence alongside a host of other skills.

It was co designed alongside people living with cancer and based its ideas on positive psychology, mindfulness and cognitive behavioural therapy. Sessions run for a minimum of 2 hours each week, enabling people to bond with all those attending and feel comfortable opening up and discussing their problems. The course focuses on individuals rather than their condition and encourages self-reflection and personal growth, covering a host of different topics such as goal setting, fatigue management, stress management, identifying personal strengths, keeping gratitude diaries, dealing with setbacks, challenging unhelpful beliefs, eating healthily and participating in physical activity.

Joining a face-to-face group encourages participants to find strength in being with others who understand and allows confidence to flourish so that people feel they can be open and honest about their emotions. It is a way of getting cancer patients to talk and hopefully connect so that this bond continues once the course is over. Groups are kept small for this very reason. After Covid it was felt that cancer patients had become too isolated and HOPE provided a way to learn how to be social once more and to realise that life is still to be lived, whatever your diagnosis. Meeting others in the same or similar situations helped people to manage their condition, symptoms and challenges better, with increased confidence and resilience.

Not everyone wants to or is able to meet face- to -face, so there is also an online option.  The course covers the same topics but is self-managed with the participant choosing their own day and time to complete. All they need is access to the internet and the commitment to work through the weekly materials at their own pace. Further information can be found at www.macmillan.org.uk, at your local cancer care centre or via the Macmillan Information Centre on 01388 455231.

Those I have spoken to have enjoyed the camaraderie that the face-to-face contact has provided, feeling safe and comfortable about opening up in such a supportive environment.  They felt that it helped them to find their ‘new normal,’ dealing with the physical and mental changes that can occur after cancer treatment.

In summary, the HOPE course can help a cancer patient (after their treatment), to feel more like their old selves despite what they have undergone, but also provide people with relaxation techniques that can help them to cope with anger, anxiety, depression and uncertainty which hits most people at some point. With strategies in place, stressful situations can become easier to handle and help you to plan for your future, using the potential you have to make the best out of your life despite what you might be coping with.

Check out your local centre and see if they offer this programme and give it a go. It seems to me that you have nothing to lose but an awful lot to potentially gain.

All that Matters

by Sir Chris Hoy

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

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

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

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

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

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

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

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

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

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

Should I be exercising during my cancer treatment?

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

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

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

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

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

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

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

 Tips:

Consult your doctors before starting any exercise.

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

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

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

Don’t exercise if you are feeling unwell.

Wear comfortable clothes and trainers

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

No Number Notification

How does it make you feel?

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

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

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

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

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

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

So, my hints and tips this month are:

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

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

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

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

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

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

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

Would a holistic approach to dealing with cancer be helpful?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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