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

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’!

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.