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.

Guest Blog ‘Book Review: 100 Stories edited by Helena Traill’ by @Coldethyl2

‘Book review: 100 Stories edited by Helena Traill

I’d like to thank J at Welliesandseaweed for inviting me to contribute this review to her blog.

100 Stories is a collection of cancer stories and images collated by Helena Traill and self- published through a Kickstarter project appeal. Starting life as a final year piece for her degree at Central St Martins, the book is an attempt to harness the power of design and story telling, in order to help normalise the experience of, and conversations around, a diagnosis of cancer. Contributors were recruited via social media platforms and asked to narrate their cancer story, focussing on how social media has helped them as they live with and beyond diagnosis.

Each participant in the project was asked to provide a portrait photograph of themselves which Helena digitised using the symbol that forms the logo of cancer charity, Cancer on board, who are one of the supporters of the project. These images accompany the stories in the book and form a moving adjunct to the narrative, making the accounts both seem more direct and personal through their obvious connection to “real” people, while simultaneously conveying the sense of separation and loneliness that a diagnosis brings through the emotional distance that using a pixellated image creates.

I was familiar with some but not all of the contributors through my own use of social media, but it was interesting to read their accounts in a less fragmented format than is the norm on the likes of Twitter or Instagram, particularly the extended accounts towards the end of the book. It was refreshing also to hear from some of the lesser known online contributors rather than the usual “cancer celebrities” that now dominate the various social media platforms, and in this book, Helena has given those people a voice along with another medium to share what it is like to live with a cancer diagnosis on an a everyday basis, rather than in the false glow of a heavily curated virtual reality.

As with its online counterparts, the contributors are predominately females with breast cancer, but one can hope that the common ground of many of the experiences shared in this book will help open up the dialogue around living with a cancer diagnosis, regardless of sex, gender or race. With 1 in 2 of us likely to experience cancer at some point in our lives, the common threads of resilience, hope and finding joy in living shared by this book’s contributors are ones that should encourage anyone beginning their own cancer story. Cancer can feel very isolating, but as this book shows, there are others out there who understand our experiences and social media communities that can offer the necessary support that sadly our healthcare systems all too often cannot.

I ordered my copy from Amazon for £20 including p &p and it arrived promptly and nicely packaged. It is a beautifully presented book and I would recommend it for those with cancer themselves, as well as a suitable gift for anyone touched by the disease.

© Coldethyl2′

(When I was writing my blog about my involvement in 100 Stories I thought it would be interesting to have some feedback about the book from someone who has been affected by cancer but who was not involved in the project. I knew D, who tweets as @Coldethyl2, was already reading the book so sent her a message to ask if she’d consider writing a guest review for my blog. She kindly said yes and has shared her thoughts in this brilliant and thoughtful review, which covers some salient points. Many thanks D!)

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).