Our daily bread

Usually we do an online order for delivery about once a week for the food and other groceries we need that are bulkier and heavier or difficult to get locally and then we top up locally. As we are physically distancing this is not an option at the moment so we’re having to plan and think much more carefully about our online order and the food we eat.

I’ve always had an ‘interesting’ relationship with food. When I was a young child my mum tried various tricks to get me to eat my food. Lamb chops eaten as ‘lollipops’ and chopped banana with icing sugar were two favourites but I was a fussy and often reluctant eater.

That’s not to say I didn’t enjoy baking and cooking. Mum always encouraged us to join in and over time I enjoyed eating food more. I remember doing my Hostess and Cook badges in the Brownie Guides. Rock cakes anyone? At high school the girls studied Home Economics or Needlework and I chose Home Economics which included cooking. Years later I worked back at the same high school covering lessons for absent teachers and this included teaching Food Technology with boys and girls. Those lessons were fun!

As an adult I’ve been a more adventurous eater mainly because my husband doesn’t like what he calls bland food and so he has done most of the cooking. I’ve never been a huge meat eater but I love seafood. About ten years ago I had a bout of food poisoning following a meal in a restaurant which left me with chronic diarrhoea. I had all sorts of hospital tests and when they came back clear I was told to try an elimination diet. Within a couple of weeks it was clear I had become lactose intolerant and wheat intolerant. I was fine as long as I didn’t eat anything with lactose or wheat in it!

I adapted my diet accordingly, but never got used to the hassle of checking and double checking ingredients. Eating anywhere but home where I could buy in gluten free, lactose free and dairy alternatives became more complicated. As time went on I found I could eat wheat again but not lactose.

Then several years later I had my breast cancer diagnosis and treatments including chemotherapy (chemo). The chemo I had caused nausea and vomiting. I discovered it is true that banana tastes the same coming up as it does going down (a little tip for you there!). Also because chemo causes mucositis I had terrible sores in my mouth, throat and down into my stomach. I either had awful constipation (on the days when I was taking steroids) or liquid diarrhoea. The special mouth wash helped the mouth and throat a little so I could swallow and other medications I had helped my stomach but I also had either a strong metallic taste (first three cycles of chemo) or no taste (last two cycles of chemo). Because I kept developing fevers and had severe neutropenic sepsis twice I had to have a neutropenic diet (for people with weakened immune systems) which further limited what I was able to eat and drink.

As you can imagine I didn’t want to eat at all but it was clear that I needed to eat to survive and whenever I was in hospital the specialist oncology dietician visited me every day. As I was fatigued, weak and losing weight I was given special high calorie ‘yogurts’ to eat. Imagine my husband’s horror when he realised he’d accidentally eaten one of my 700 calorie yogurts … At home I found the The Royal Marsden Cancer Cookbook a great source of inspiration with its lists of foods and recipes to help with the various side effects of chemotherapy. Thankfully I had my husband and my mum cooking for me and making sure I ate.

After I finished chemotherapy I gradually regained my ability to enjoy food. I will never take being able to eat for granted again. The chemotherapy has left collateral damage and my stomach is even more sensitive than it was before. Thankfully these days there are a lot of lactose free and vegan alternatives but I do miss my cheeses and the freedom to eat whatever I fancy.

During these last two-three weeks of thinking more about food and meals I’ve appreciated food in a new way. We’ve had to become more careful about the way we use food. How we can use what we’ve got. I’ve adapted recipes and we’ve had next to no waste. Jack Monroe’s books and website are a brilliant resource full of ideas.

It is only through this personal experience of needing to be more careful with food that I’ve realised I’ve always taken the availability of food as a given. Today we dusted down the bread-maker and we are baking a loaf of bread. It smells delicious. It has led to me reflecting on the words from Lord’s Prayer ‘Give us this day our daily bread’. More about that in a future blog.

A list of links and resources for people going through cancer treatments (which I will add to):

Healthy eating tips – Haven

Healthy Eating – Macmillan

Diet and food supplements – Macmillan

Eating problems – Macmillan

Eating well – Royal Marsden

Cancerversaries

Cancerversaries also known as cancer anniversaries are year round for me. I found the lump just before Christmas and had my last hospital treatment just over 18 months later.

Yesterday evening I realised I am feeling unsettled as I approach the cancerversary of feeling the lump (again).

The lump had definitely changed in the weeks since I’d first felt it on Christmas Eve. In my husband’s words it felt gnarly. I went to see my practice nurse. I remember everything that happened in that appointment. Everything. When the nurse felt it she couldn’t hide her facial expressions or her body language. She looked shocked and she starting shaking. I was calm, drawing on all my experience and training, reflecting in action to give her time to gather herself. I needed her to be able to think through what she needed to do and say the words that I knew were coming: ‘I need to refer you to the breast clinic. It will be an urgent referral. You should be seen within a week or two.’

Thankfully I don’t usually feel like this as cancerversaries approach. This is the first year since it all started that I have felt this way about a cancerversary. Usually they come and go and if I remember them I feel a sense of gratitude that I’m still here and have reached another year since…

I don’t know what’s different this year, why I’m feeling angsty. Maybe it’s because I’ve been waiting to hear about a routine appointment with my oncologist. Maybe it’s because I’m going to have my mammogram soon. Maybe it’s because I haven’t been able to get out as much as usual during the last week which has also impacted on my diet and my rest/sleep.

When we acknowledge and recognise our feelings it enables us to take some action and control. So I have phoned and left a message enquiring about the appointment. I have written this blog which has helped me think about my feelings, identify what’s changed and upset my sense of well-being and work through what I need to do.

I need to start walking again even if I can only manage five or ten minutes. I love being outside and walking, it is a salve for body, mind and spirit. I need to watch my diet. I need to develop a consistent bedtime routine. I need all these things, together with the encouragement, friendship and support of others as I face my cancerversaries.

1 of 100 Stories

Last February I responded to a tweet from Helena Traill asking people who have cancer experience if they would be interested in contributing to a book for her degree dissertation. Helena’s project really piqued my interest and I love to encourage and support others, especially young people

I participated by email. Helena asked me to send a portrait/picture of myself so she could create a pixelated portrait and asked me to share some of my cancer story and the role social media has played.

I shared information about the project on social media and was delighted when I heard Helena had accomplished her goal to create 100 portraits and gather 100 stories of cancer. I wasn’t able to go to the Central Saint Martins Degree Show in June but saw the photos on social media and it looked great.

I didn’t think much more about the project until an email from Helena dropped into my inbox in September. I was delighted to read that she’d been rewarded for all her hard work with a First in Graphic Communication Design (Well done Helena!). She shared her plans to self-publish the 100 Stories book by crowdfunding for the project on Kickstarter. Helena asked whether I’d like to be in the book. I thought about it for all of two seconds…

Helena launched the Kickstarter in October on social media and in the press and soon raised more than the £8,400 needed to cover printing, postage and packing. That’s when the work started to get it printed. I received my book (beautifully packaged) in mid-December before Christmas and attended the official book launch in early January (I will include a bit about this in a future blog). I guess I’m biased but this is a great book. I haven’t read all the stories yet, preferring to read a few at a time but what has struck me is that although we are different, with different backgrounds, cancers, circumstances, gender and so on, there are many similar threads running though our stories including loss and resilience.

To create and print this book in such a short time is a great achievement and I feel honoured to have my story included. The pixelated portraits that pair each of the 100 stories use the Cancer on Board symbol. Inspired by the Transport for London Baby on Board badges James McNaught, who supported the project and whose story is included in the book, came up with the idea to start a charity providing Cancer on Board badges for people to use on public transport to help them get a seat. The badges also enable conversations about cancer. Other supporters included The Brain Tumour Charity (a charity close to my heart) and Maggies Centres.

Helena’s own motivation for this project was based on personal experience. Her father was diagnosed with a brain tumour when she was a young child and her grandmother has had a breast cancer diagnosis. As a graphic designer and visual storyteller Helena wished to explore the concept of narrative structure in her work and increase the emotional engagement of the audience/reader.

I am also interested personal narratives having studied and sought them out in my undergraduate and postgraduate degrees. The personal narrative approach recognises that people are experts of their own lives. I suggest this book is a great resource for healthcare students and all those working with cancer patients as well as those personally affected by cancer to help them to empathise with and support cancer patients.

Bearing in mind that ‘1 in 2 people in the UK born after 1960 will be diagnosed with some form of cancer during their lifetime’ (Cancer Research UK (1) this is a timely book.

100 Stories can be bought from Amazon here

(1) https://www.cancerresearchuk.org/health-professional/cancer-statistics-for-the-uk#heading-Three (Accessed 24/01/2020).

New Year Reflection, Review and Reset

I’m sitting outside on the penultimate morning of not only this year but this decade. It is cold so I’m wearing a coat, a hat and a scarf but the sky is a beautiful blue and the sun is shining, warming my face. My coffee cup warms my hands. I take a sip of my coffee; its rich flavour tastes good. I can hear birds singing and our neighbours saying their goodbyes to their Christmas visitors.

Right now life feels good.

I close my eyes.

It’s been about four months since I last spent time intentionally reflecting, reviewing and resetting and a lot has happened in that time. Sad times and happy times.

At the beginning of September our son had just moved in so we could care for him, and his dog, following surgery to fix a badly broken ankle. He couldn’t move much, had to keep his leg raised and was in pain. However, we got to spend precious time with him, and his girlfriend when she wasn’t working. I loved their chat, their laughter, their youthfulness. I loved getting to know their cheeky and energetic but sweet natured dog.

At the beginning of September we also heard the news of the death of a former colleague and friend of mine due to metastatic breast cancer. A couple of weeks later came the news of the decline in health of my auntie, again due to metastatic breast cancer. After everyone had visited to say goodbye she died. A few days later, at the beginning of October, another friend died. It’s hard to explain all my emotions. I’m still grieving but although it has been a time of deep heartache and grief it has also been a time of connectedness with others as we’ve celebrated and remembered our loved ones. I’m thankful for our reciprocal support. I’m also thankful for the support of relative strangers.

One day I felt overwhelmed with grief, fatigue and pain but somehow struggled to my exercise class. I knew I needed to be with other people but my body felt completely broken. Not surprisingly the others noticed and a few came over. I found myself tearing up and telling them all how much I hate cancer. They enveloped me with their care, encouraged me to do what I could and a couple of them invited me out for coffee and a sandwich. I felt loved.

After our son had been given the okay to start moving and weight bearing again he was able to return to his home. Our lives resumed their usual pattern, we caught up with friends, enjoyed a few outings and spent time with family and friends. We were able to visit our daughter and son-in-law to see them in their new (to them) home and we also visited one of our favourite places, North Norfolk.

I’m sure there is a psychological element to pain and this is one of the reasons why self care is so important to me, which includes discussing any concerns with my medical team. As the autumn progressed my migraines and pain became worse and worse. I met someone recently diagnosed with metastatic cancer who urged me to get checked, so after some procrastination I phoned my medical team who arranged a couple of scans. Thankfully I didn’t have to wait long for my results. I received the latest news on Christmas Eve, four years to the day that I felt my lump, that my bone scan did not show any signs of metastatic disease. I’m so relieved (although it breaks my heart that other people have not had good news recently) …

These are just some of the things that have been going on in our lives since September. Looking back has given me a new perspective about this time. In the midst of all life’s difficulties (and I’m aware that other people have it worse) there has been fun and rejoicing for which I’m thankful.

The New Year is often a time to rest and take stock; to reflect, review and make resolutions and pray but these are things you can do at any time of the year. Any day can be the beginning of your new year.

There is need to wait if there are changes you want to make. One approach that I have found helpful to discern direction is to look back over a period of time and review everything that has happened. Then I reflect on what brings energy and what drains me and from there I am able to discern and make more space and time for the things that bring me energy.

I am not one for making New Years resolutions, but as I go forward into the new year I will continue with good habits, being grateful and practising gratitude. I will continue being open to change, new experiences and new people in my life. During the last few weeks I’ve been discerning a word for myself for the year ahead. This year my word is courage.

Christmas Tree

I love our tradition of going out to find our Christmas tree. We get all wrapped up in winter coats, hats, gloves and scarves before going out to find ‘the one’. I love bringing the tree home, putting it up, getting the boxes of decorations down from the loft and decorating it as I play Christmas music and enjoy a glass of wine.

We decorate our Christmas trees with decorations we’ve collected and made over the years. The decorations are meaningful to us because of the memories they evoke.

The star we made out of a coat hanger and silver foil for our first Christmas tree reminds us of our first home. The bear reminds us of a family holiday. The decorations our children made remind us of their childhood years.

Family traditions can help create a sense of connectedness between people and through time. They change and evolve as our circumstances change and people come and go but through them we have a link from the past, to the present, to the future. One generation to the next providing a sense of continuity.

When I was having cancer treatment, I couldn’t do many of the things I used to do in the Advent season leading up to Christmas but I found some of our family traditions over the festive season anchored me. Even though our lives had been completely changed that year and our lives were far from normal our traditions gave us a semblance of normality.

During my treatment my husband started collecting Lego from the 1970s and 1980s to make trains, then soldering circuit boards and programming them on his 1980s computer so he could run trains under the Christmas tree. A new tradition!

You may have your own traditions during the Christmas season and other times of the year that you have found helpful.

I wish you well during this festive season and hope you experience some of the hope, joy and peace the story of Christmas brings but as we all know it can be a difficult time for many reasons. Please look out for others. Show them you care. If you’re struggling remember many people care, reach out for help from a family member or friend, or people in your community or neighbourhood. If you’re alone or feeling lonely check out Sarah Millican‘s invitation to use the hashtag #joinin on Twitter to chat and connect with others on Christmas Day.

You can find a list of organisations with helplines that are open and offer support in the U.K. over Christmas from ITVs This Morning and for those who specifically need cancer support I’ve noticed Macmillan Cancer Support‘s helpline is also open.

(Updated 23/12/2019)

One step at a time

Since my breast cancer treatment I have noticed some things hinder me and some things help me as I move forward to find direction and a way to keep going. I have to remember and remind myself that I can only take one step at a time and that it’s enough to take one step at a time. I can’t run before I can walk.

What has hindered me most is the collateral damage from my treatments, the late effects, especially the fatigue, hot flushes, infections, migraines and back pain. The late effects can make me feel anxious. There are times I can’t push through and it is all I can do to be. At these times it helps me to remind myself that it’s okay to be. It helps to remind myself I am not in a competition or a race with anyone else. I’m not out to prove myself to anyone else. Neither am I in a competition or a race with myself. I don’t have to prove myself to myself.

Comparing myself with other people hinders me. It’s helpful to remind myself I am the only person who lives my life, in my body, with my background, my circumstances and my experiences. Comparing myself now with myself then isn’t helpful either. It is important to be compassionate, kind, loving and non-judgemental to myself.

It helps me to use the analogy of going for a walk. There are all sorts of things I (usually subconsciously) take into consideration before I go for a walk: How am I feeling? What is the weather forecast like? How much time do I have? What sort of walk do I want to do? Do I want to be alone or do I want company? How far do I want to go? What shall I wear? What might I need? Drink, snacks, first aid, tissues, money, phone etc? Are there any cafes or pubs on the walk? And so on.

Similarly, as I move forwards and navigate my life post primary breast cancer diagnosis and treatment there are all sorts of things I am taking into consideration.

How am I feeling, mentally, physically and spiritually? Am I getting out of kilter? Why? Is there something I need to address in my life in order to have a greater sense of equilibrium?

The forecast is uncertain and I can’t control the future but I am thankful to be alive now.

Recently, I’ve been thinking a lot about the sort of life I want. I have to take off any clothes that hold me back and put on the ones that help me go forward. Take off the heavy clothes and put on the lighter clothes. To have that sense of freedom and joy I have when I’m walking barefoot on a beach.

Self-care is not an optional extra but a necessity and a priority.

Going for a walk usually involves some kind of planning even if it’s a ‘I’ll head off in that direction and then see’ plan. I enjoy exploring and keeping my options open and I love spontaneity but I drift if I don’t have some framework, some plan. When I’m walking I keep looking forwards. If I look backwards I will lose my footing or trip and fall and I won’t get anywhere. So I set eyes on the direction I’m going in and look ahead. I might set myself smaller goals along the way. I also might stop and take a break and look around or look back and notice how far I’ve come.

When I go on walks I like to stop sometimes to take photos. Sometimes I pick up something to remind me of the walk, such as a feather, a leaf, a shell or a stone. When I was at my weakest during chemotherapy I couldn’t sit up without help. So I set myself small incremental goals. Sit up, sit up for longer, stand with help, stand by myself, walk with the help of someone else to the bathroom, walk by myself to the bathroom, walk around our home, walk around the garden, walk to the end of the road and so on. Sometimes I look back at some of the photos taken during that time. They remind me that I kept going then and I will keep going now.

It helps to have other people to help me such as close friends and family, health care professionals and counsellors. Sometimes just having someone outside the situation to chat with is invaluable. For example, earlier this year I was going somewhere unknown and I started panicking. I was worried about how I would cope with one of my late effects. When I spoke with my counsellor I was able to think through what I could do to take away some of the unknowns.

It’s not just about me. Life experience has taught me and my husband that we have to hold any plans we make loosely. During the last few years serious illnesses have led to many of my and our plans being upended but at the moment we’re moving forward with a plan that might lead to a(nother) major life change. It brings another level of uncertainty into the mix and is both scary and exciting. As I (and we) move forward into the unknown we don’t know how it’s going to turn out.

Years ago I heard someone say something along the lines of ‘we need to plan as though we are going to live forever but live each day as if it is our last’. I like that.

Which way now?

My breast cancer diagnosis was completely disorientating. It challenged my sense of self shockingly and suddenly. Losing my hair due to chemotherapy was an outward sign of all the other losses. And there were many losses, not just for me but for my close family and friends too including, psychologically, the loss of a sense of control, safety and security. Cancer cancels and curtails.

When you’re having treatment for primary breast cancer there is usually a treatment plan in place. My plan had to be changed. Initially I was going to have surgery and radiotherapy, then I found out I needed more surgery, chemotherapy and targeted therapy as well as radiotherapy. During chemotherapy I became ill with frequent fevers, neutropenic sepsis etc so some of my planned treatment had to be delayed, reduced and cancelled. Nevertheless, the treatment plan gave me some idea of where I was and where I was going. Following the end of treatment there was a sense of ‘which way now?’.

Most areas have ‘moving forward’ courses for cancer patients. The one I went on is called the HOPE (Help to Overcome Problems Effectively) course. Developed by Coventry University with Macmillan Cancer HOPE courses provide support for anyone who has had a cancer diagnosis. When I attended I was coming towards the end of my active treatment. I had been having three weekly treatments for well over a year at that stage and it helped prepare me for the next stage of life. There were six participants on my course which was facilitated by a survivor/volunteer and a health care professional. We had differences based on age, background, cancer and gender but we connected as cancer patients so often do based on our empathy, shared experiences and understanding. We chatted, we cried, we laughed. We learned about diet, exercise and relaxation techniques. We discussed and practised identifying goals, making plans and fulfilling them. One of mine was going to one of our local beauty spots for a walk by myself. It gave me a huge sense of achievement. The HOPE course was great. Based on my experiences I recommend the HOPE course or similar. Some breast cancer patients may live in an area where there are ‘moving forward’ courses specifically for breast cancer patients.

Many people I know say that ‘moving forward’ is in some ways harder than the treatments. In some ways it is; the treatment is over but the emotional and physical late effects are not. I have check-ups and I can contact my team with any concerns. This helps me move forwards. As a primary breast cancer post-treatment navigator, I am finding it takes time to adjust, to find my bearings.

I have known many people who had been diagnosed with breast and other cancers throughout my life. Sadly more of them have died than survived cancer but I do know people who are still around 20, 30 and 40 plus years later. My uncle was diagnosed with cancer about 45 years ago. I was a young child then but I can still remember the fear that descended on the family. The hushed voices that spoke about the ‘big C’. As we didn’t live close by we didn’t see my uncle very often but I remember how ill my uncle, a young man in his mid-twenties at the time, looked when we did see him. I can remember my dad telling me that had his brother been diagnosed a few years earlier it was unlikely he would have survived. He was one of the first people to receive his treatment. Modern science and treatments saved my uncle’s life. They have given him time. However, the treatments were harsh on his body. It was not until I had my own experiences of cancer that I started to understand what he went through and has lived with.

When you’ve experienced a traumatic event that has challenged your identity and threatened your life you take what you have experienced and learned forward with you. You can’t unfeel those feelings, unhear those words, ‘it’s cancer’, ‘it’s really, really bad news’, ‘it’s worse than we thought’, ‘you need chemotherapy’ you can’t unhear, unsee or unsmell the sounds, sights and smells of hospital.

‘Moving forward’ is a somewhat nebulous term and in my experience it isn’t nearly as easy, linear or straightforward as I thought it would be when I participated in the HOPE course. It is a two steps forward one step back experience.That’s not to say you dwell on everything you’ve experienced but it is part of your life so there are reminders. In fact sometimes the reminders help me realise I have moved forward.

So, ‘moving forward’ isn’t a one off event but a life long process. It isn’t about diminishing the impact of cancer, the treatments, the late effects. It isn’t about trying to forget what has happened. It isn’t about being positive or being negative. It is about acknowledging all that has happened and is happening, the late effects, emotional and physical, and finding direction, a way to keep going.

In my next blog I plan to share about a little more about what helps and what hinders me as I move forward.