Father’s Day

This is something I wrote while I was having treatment for breast cancer

‘Today I had to go to hospital for treatment. As I’m fatigued and have ongoing pain in my back and legs I am still relying on other people to take me to appointments, often dad. 

I find going to hospital with dad very calming. I feel safe, I feel secure. 

I love my dad and he loves me. 

I’m so thankful for my dad’.

A blessing during the last few years has been that I’ve had more time with my parents than I would have had if I had been continuing as before. Of course my dad isn’t perfect, no-one is, but yesterday as we spent time together in the garden over a cream tea I felt incredibly thankful.

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.

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)

Grief

It was a tough week. Within the space of a few days two people who had become particularly special to me in the last few years died. They both died as a result of cancer.

I’m no stranger to adversity, grief and loss. My own and that of others. And although I’m familiar with models and theories such as Kübler-Ross’s five stages of grief, Neimeyer’s work on meaning making, Stroebe and Schut’s dual process model of coping with bereavement and others which can help us understand the experiences around grief, I also know that in reality grief is complex; it affects us all differently, and is not the same as each of us is unique and each person we have loved and lost and grieved over is as unique as our relationships with them.

When people we care about die our lives are never quite the same again. Even years later we may find ourselves remembering those loved ones and feeling the heartache and loss as if they had just died.

When I have a concern, when something is wrong with me, when I’m upset, I reach out. I can’t do life by myself. I am weak but I believe my acknowledgment of that also makes me strong. As I tweeted last week ‘Strength and weakness are not opposites, but rather they go together. Being strong involves acknowledging you’re weak. To understand your strengths you need to understand your weaknesses…’.

When I’m in that raw state of heartache, heartbreak and shock that I feel when a loved one dies it is difficult to find the words to describe my feelings and when all I need is care in the form of a hug I don’t really need the words. As time goes on I find it helpful and therapeutic to think about my feelings, to put them into words.

Most of my life I have worked with people. When I worked with children and young people I used to help them learn the language of emotions through play, to help them express their beliefs, feelings and thoughts about their experiences and their relationships. I think we can have a tendency to push aside feelings we consider negative to cope and get on with life do but I believe it is good to allow ourselves a pause, some space and time to be with our feelings, to grieve. Many, as I have during the last week or so, find informal support for this from family and friends and others in their communities. Sometimes though, I find it is better and easier to talk to people who are not emotionally involved, who are professionally trained counsellors and therapists who have experience, knowledge and understanding and whose work is governed by an ethical code of practise and values to provide formal boundaried and safe support.

I am going to share some of the emotions I’ve noticed and experienced in myself during the last nine days. Perhaps you recognise some of them.

Anger – Anger about cancer, the way it cancels and curtails life, it’s destructiveness.

As a child I suppressed my feelings of anger to the extent that if you had asked me what made me angry, I would have struggled to answer. Good girls don’t get angry, right? Wrong! As a teenager, I probably would have mentioned having a sense of anger about injustices and the wrongs I saw in the wider world but for myself on personal level I had suppressed my anger to the extent that I didn’t recognise my anger at all. So I’m pleased I’ve connected with that emotion this week.

Anxiety – Is this migraine just a migraine? Is this back pain just back pain? Is this fatigue just fatigue? Is this upset stomach just an upset stomach? Is that spot just a spot? Is my weight loss just normal weight loss. Rationally I think the answer to all these questions is probably yes but, and this is where fear comes in, I wonder could it be metastatic cancer? How do I know if and when my symptoms are something I need to worry about? If I do mention them to one of my doctors and nurses will they judge me and label me as a worry wart? Again, rationally, I know I need to mention them and share responsibility for the decision making with the experts.

Confusion – I have far more questions than answers. Many of my ‘why’s’ don’t have any answers and I’m okay with that really.

Disappointment – A sense that this isn’t the way life should be.

Loss – I have lost my auntie, she will not be part of my life anymore. We won’t be able to chat about our childhood experiences and family history and how it has affected us. We won’t be able to chat and compare notes about our cancer treatments, our team. (We had the same surgeon, oncologist and nurse). We won’t be able to share a look or a giggle. I will miss her laughter and her smile. I will miss her voice. I will miss her presence. I will miss her.

I will miss my friend, his care and his empathy, his sense of fun and irreverence, his generosity of spirit, his honesty and openness, his humbleness, and his warmth.

In my grief for my auntie and my friend I have remembered other loved ones who have died over the years, including some of my closest friends.

Love – As the saying goes it is better to have loved and lost than never to have loved at all and people and relationships are so important to me. I can’t do life alone. So I’ve had a sense of appreciation that I am able to feel, to love and give and receive care. From my family (I will treasure the memory of the care and hugs from my son last week when we heard the news), from close friends and from others who were able to be with me, like the vicar who responded to a phone call from me saying ‘I’m really struggling, can you please pray with me’ by praying with me right then over the telephone. (He did offer to meet with me in person too).

Nostalgia– All those good times with those beautiful people.

Relief – By the time they died my auntie and my friend had a very poor quality of life. There was no hope that things could be better for them. Now they are no longer suffering in their broken bodies there is a sense of relief.

Sadness and sorrow – Not just for myself but for their closest, nearest and dearest. Thinking about their pain can be almost overwhelming.

And last but not but not least because I haven’t experienced these emotions in an alphabetical list as presented here as I’ve sought to clarify how I am feeling and put some order in the mess, but in a completely muddled up way. I’ve had a sense of

Thankfulness – For their lives, that they were part of my life.

I’m alive and I really do believe the best way to honour their lives is to live mine.

Update 9/102019

Yesterday when I wrote this I was feeling fine, today I’m not. Not at all. That’s grief, it’s complex and messy …