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.

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!)

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)