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

Where’s your focus?

In these days of fear and uncertainty we’re seeing the good, the bad and the ugly. Let’s focus on the good.

All around there are acts of care and kindness, of connection, acknowledging we need each other. Here in Suffolk many people are asking what can I do to help? People are using social media to come together to coordinate support for each other by, for example, keeping in touch and by running errands like going to the pharmacy or shop for vulnerable neighbours. Churches are running virtual groups and services and are offering both practical and prayer support. Cafes, pubs and restaurants are organising home deliveries. Entertainers and musicians are performing live online.

Where’s your focus?

Do you have stories of human connection, care and love to share? If so I’d love to read them.

Looking for lost civilisations

This morning I went for a walk on the country roads near my home . I’ve always loved being outside in nature, noticing the fauna and flora that is all around us.

When I was a child we would often go for walks on the Suffolk beaches, on the heathlands and in the woods, often with a picnic. Later when I became a mum I passed my passion for being outside on to my children. We went on a lot of walks but they were never ‘just’ walks. We’d hop, march, run and skip. We’d often sing and they learnt all the songs I’d learnt in the Brownie Guides … ‘Alice the camel’, ‘Bringing home my baby bumble bee’, ‘Fish and chips and vinegar’ We’d play ‘ I spy’, we’d go on bear hunts and we’d go on treasure hunts. Sometimes we were looking for real treasure (birds, feathers, flowers, colours, etc). Sometimes we were looking for imagined treasure (chests full of silver and gold). Sometimes we’d go in search of lost civilisations. One time we came across an imaginary Mayan temple right here in the Suffolk countryside.

On my walk this morning I noticed a lot of treasure all around. Birds, buds, wild flowers. Who doesn’t love spring time with its promise of new life? But this year it’s different isn’t it? We are living at a time when a lot of what we usually take for granted is threatened and life as we know it has been cancelled and curtailed at all levels, personal, national and global.

I’ve been thinking about those walks with my children. I’ve been thinking about our searches for lost civilisations. I’ve been wondering what the long term impact of coronavirus COVID-19 will be on our civilisation, on us. I’ve been wondering how we will be remembered. Will we be remembered for self sacrifice like the villagers of Eyam who in 1666 quarantined their village to stop the spread of the plague. Will we too be remembered for our shared sense of humanity? For our love?

The choice is ours.

This is some of the treasure I came across this morning

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.

Let’s party

I wrote this three years ago just after my last stay on the oncology ward.

On Friday evening when I started feeling ill I thought it was due to the cancer treatment I had earlier in the day. The side effects of the targeted therapy (herceptin) I’m having are not as severe as the side effects of chemotherapy, but it still causes side effects.

On Saturday I woke up feeling better but with what seemed to be the start of a cold. Later on I noticed my throat was showing signs of an infection so I made an appointment to see the GP first thing on Monday morning.

I took painkillers and went to bed early that evening but woke up just before midnight. I was in a lot more pain down my back and legs than usual. My ears and throat were very, very sore. I took my temperature. It was very high. I fell asleep again before waking again a few minutes later coughing and struggling to catch my breath. I decided to call 111, the out of hours doctors service, for advice.

I was triaged and put through to a doctor almost straight away who decided I needed to be seen by a local doctor. I was told I would receive a call back within the hour to arrange this. An hour later they called to tell me that a doctor would call soon. I fell asleep again. Next time I woke up I was shaking uncontrollably. I felt a bit confused and struggled to speak clearly. My husband and son were very worried.

As I still hadn’t had a call back from the out of hours service we decided to call the dedicated oncology helpline. The triage nurse said I needed to go to the oncology ward to be triaged as soon as possible. This was the right decision as the out of hours doctor didn’t call until the morning. My husband got me and my overnight bag into the car, we dropped our son off at my parents and made our way to hospital. During chemotherapy I had to call the helpline and go in on numerous occasions with high fevers, usually in the middle of the night, and was diagnosed with severe neutropenia twice.

The nurse confirmed my temperature was high and I had a high pulse rate and had high blood pressure. Usually I have a low pulse rate and normal blood pressure. I had blood tests and was given intravenous antibiotics. I then waited for the blood test results and to see a doctor.

I drifted in and out of sleep and lost all track of time. After what seemed like hours I saw a doctor. She arranged pain relief, a chest x-ray and a urine test, both of which were clear, and decided I should wait to see the duty consultant. The consultant decided I should stay in for intravenous (iv) antibiotics as the blood test results showed I was really unwell. I was moved to a bed on the ward for more iv antibiotics and monitoring.

About 24 hours later I noticed that I was starting to feel better and soon I was asking to to be discharged. I am continuing with oral antibiotics at home and I am slowly recovering.

I’ve had another reminder of my frailty, there is a lot I can’t control.

I’ve been reflecting on my stay, I am feeling thankful for the kindness of the doctors, nurses and other health care workers, as well as all the other people who work there. I’ve also been thinking of family and friends and others whose care, kindness and support encourages me to keep going.

I’ve also been thinking about the other patients I met this weekend and during previous admissions. We are different ages, have different backgrounds, different beliefs, different circumstances, different skills etc but all of us are being treated for cancer. I have noticed that those of us who have had a cancer diagnosis often bond very quickly when we meet. Often no words are necessary. There is care, respect and understanding.

Nobody wants to be in hospital but thinking of my experiences this time I am thankful for the other people. I am especially thankful for the old lady who was moved into the bed next to me. When the lights were switched off and the doors were closed for our afternoon nap time, she turned to me with a twinkle in her eye and said ‘let’s party’!

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!)