Advent

It’s the beginning of Advent. I’ve been thinking about what the season means to me.

First of all the memories. Growing up in the 1970s and 1980s watching the presenters make the Blue Peter Advent Crown every year was a childhood tradition.

Another tradition was the card Advent calendars. I found it exciting to see what lay behind each window in the lead up to Christmas, the pictures of beach balls, teddy bears and toy cars. Then came the chocolate Advent calendars, hmm chocolate! Now you can buy Advent calendars filled with different treats, Lego, cosmetics, perfume, skincare, candles, beer, wine, spirits, breakfast cereal, chutney, popcorn … Of course you can also make your own.

One of the things I like about social media is the sharing of ideas. One of the ideas that has gained traction in the last few years is the Reverse Advent Calendar which involves filling an empty cardboard box with one item everyday during Advent and donating it to a local food bank.

Since my cancer diagnosis and treatment Advent has become more meaningful for me as a time of both reflection and expectation, intentionally being in the present and waiting as I reflect on my faith and hope.

One step at a time

Since my breast cancer treatment I have noticed some things hinder me and some things help me as I move forward to find direction and a way to keep going. I have to remember and remind myself that I can only take one step at a time and that it’s enough to take one step at a time. I can’t run before I can walk.

What has hindered me most is the collateral damage from my treatments, the late effects, especially the fatigue, hot flushes, infections, migraines and back pain. The late effects can make me feel anxious. There are times I can’t push through and it is all I can do to be. At these times it helps me to remind myself that it’s okay to be. It helps to remind myself I am not in a competition or a race with anyone else. I’m not out to prove myself to anyone else. Neither am I in a competition or a race with myself. I don’t have to prove myself to myself.

Comparing myself with other people hinders me. It’s helpful to remind myself I am the only person who lives my life, in my body, with my background, my circumstances and my experiences. Comparing myself now with myself then isn’t helpful either. It is important to be compassionate, kind, loving and non-judgemental to myself.

It helps me to use the analogy of going for a walk. There are all sorts of things I (usually subconsciously) take into consideration before I go for a walk: How am I feeling? What is the weather forecast like? How much time do I have? What sort of walk do I want to do? Do I want to be alone or do I want company? How far do I want to go? What shall I wear? What might I need? Drink, snacks, first aid, tissues, money, phone etc? Are there any cafes or pubs on the walk? And so on.

Similarly, as I move forwards and navigate my life post primary breast cancer diagnosis and treatment there are all sorts of things I am taking into consideration.

How am I feeling, mentally, physically and spiritually? Am I getting out of kilter? Why? Is there something I need to address in my life in order to have a greater sense of equilibrium?

The forecast is uncertain and I can’t control the future but I am thankful to be alive now.

Recently, I’ve been thinking a lot about the sort of life I want. I have to take off any clothes that hold me back and put on the ones that help me go forward. Take off the heavy clothes and put on the lighter clothes. To have that sense of freedom and joy I have when I’m walking barefoot on a beach.

Self-care is not an optional extra but a necessity and a priority.

Going for a walk usually involves some kind of planning even if it’s a ‘I’ll head off in that direction and then see’ plan. I enjoy exploring and keeping my options open and I love spontaneity but I drift if I don’t have some framework, some plan. When I’m walking I keep looking forwards. If I look backwards I will lose my footing or trip and fall and I won’t get anywhere. So I set eyes on the direction I’m going in and look ahead. I might set myself smaller goals along the way. I also might stop and take a break and look around or look back and notice how far I’ve come.

When I go on walks I like to stop sometimes to take photos. Sometimes I pick up something to remind me of the walk, such as a feather, a leaf, a shell or a stone. When I was at my weakest during chemotherapy I couldn’t sit up without help. So I set myself small incremental goals. Sit up, sit up for longer, stand with help, stand by myself, walk with the help of someone else to the bathroom, walk by myself to the bathroom, walk around our home, walk around the garden, walk to the end of the road and so on. Sometimes I look back at some of the photos taken during that time. They remind me that I kept going then and I will keep going now.

It helps to have other people to help me such as close friends and family, health care professionals and counsellors. Sometimes just having someone outside the situation to chat with is invaluable. For example, earlier this year I was going somewhere unknown and I started panicking. I was worried about how I would cope with one of my late effects. When I spoke with my counsellor I was able to think through what I could do to take away some of the unknowns.

It’s not just about me. Life experience has taught me and my husband that we have to hold any plans we make loosely. During the last few years serious illnesses have led to many of my and our plans being upended but at the moment we’re moving forward with a plan that might lead to a(nother) major life change. It brings another level of uncertainty into the mix and is both scary and exciting. As I (and we) move forward into the unknown we don’t know how it’s going to turn out.

Years ago I heard someone say something along the lines of ‘we need to plan as though we are going to live forever but live each day as if it is our last’. I like that.

Which way now?

My breast cancer diagnosis was completely disorientating. It challenged my sense of self shockingly and suddenly. Losing my hair due to chemotherapy was an outward sign of all the other losses. And there were many losses, not just for me but for my close family and friends too including, psychologically, the loss of a sense of control, safety and security. Cancer cancels and curtails.

When you’re having treatment for primary breast cancer there is usually a treatment plan in place. My plan had to be changed. Initially I was going to have surgery and radiotherapy, then I found out I needed more surgery, chemotherapy and targeted therapy as well as radiotherapy. During chemotherapy I became ill with frequent fevers, neutropenic sepsis etc so some of my planned treatment had to be delayed, reduced and cancelled. Nevertheless, the treatment plan gave me some idea of where I was and where I was going. Following the end of treatment there was a sense of ‘which way now?’.

Most areas have ‘moving forward’ courses for cancer patients. The one I went on is called the HOPE (Help to Overcome Problems Effectively) course. Developed by Coventry University with Macmillan Cancer HOPE courses provide support for anyone who has had a cancer diagnosis. When I attended I was coming towards the end of my active treatment. I had been having three weekly treatments for well over a year at that stage and it helped prepare me for the next stage of life. There were six participants on my course which was facilitated by a survivor/volunteer and a health care professional. We had differences based on age, background, cancer and gender but we connected as cancer patients so often do based on our empathy, shared experiences and understanding. We chatted, we cried, we laughed. We learned about diet, exercise and relaxation techniques. We discussed and practised identifying goals, making plans and fulfilling them. One of mine was going to one of our local beauty spots for a walk by myself. It gave me a huge sense of achievement. The HOPE course was great. Based on my experiences I recommend the HOPE course or similar. Some breast cancer patients may live in an area where there are ‘moving forward’ courses specifically for breast cancer patients.

Many people I know say that ‘moving forward’ is in some ways harder than the treatments. In some ways it is; the treatment is over but the emotional and physical late effects are not. I have check-ups and I can contact my team with any concerns. This helps me move forwards. As a primary breast cancer post-treatment navigator, I am finding it takes time to adjust, to find my bearings.

I have known many people who had been diagnosed with breast and other cancers throughout my life. Sadly more of them have died than survived cancer but I do know people who are still around 20, 30 and 40 plus years later. My uncle was diagnosed with cancer about 45 years ago. I was a young child then but I can still remember the fear that descended on the family. The hushed voices that spoke about the ‘big C’. As we didn’t live close by we didn’t see my uncle very often but I remember how ill my uncle, a young man in his mid-twenties at the time, looked when we did see him. I can remember my dad telling me that had his brother been diagnosed a few years earlier it was unlikely he would have survived. He was one of the first people to receive his treatment. Modern science and treatments saved my uncle’s life. They have given him time. However, the treatments were harsh on his body. It was not until I had my own experiences of cancer that I started to understand what he went through and has lived with.

When you’ve experienced a traumatic event that has challenged your identity and threatened your life you take what you have experienced and learned forward with you. You can’t unfeel those feelings, unhear those words, ‘it’s cancer’, ‘it’s really, really bad news’, ‘it’s worse than we thought’, ‘you need chemotherapy’ you can’t unhear, unsee or unsmell the sounds, sights and smells of hospital.

‘Moving forward’ is a somewhat nebulous term and in my experience it isn’t nearly as easy, linear or straightforward as I thought it would be when I participated in the HOPE course. It is a two steps forward one step back experience.That’s not to say you dwell on everything you’ve experienced but it is part of your life so there are reminders. In fact sometimes the reminders help me realise I have moved forward.

So, ‘moving forward’ isn’t a one off event but a life long process. It isn’t about diminishing the impact of cancer, the treatments, the late effects. It isn’t about trying to forget what has happened. It isn’t about being positive or being negative. It is about acknowledging all that has happened and is happening, the late effects, emotional and physical, and finding direction, a way to keep going.

In my next blog I plan to share about a little more about what helps and what hinders me as I move forward.

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 …

“Bye-bye, dear, bye-bye”

Two weeks ago, the day after my auntie had been admitted to hospital with failing health due to metastatic breast cancer, I visited her with my parents and my brother.

We were pleased to find her sitting up in a chair next to her bed. Her eyes sparkled and she found the energy to laugh, smile and talk.

Following my breast cancer diagnosis, my auntie and I got to know each other in a different and new way, we developed a depth of relationship we didn’t have before, a new understanding. We didn’t see each other very often but when we did there was something special there. She thanked me for helping her talk and think about things she’d been too scared to talk and think about before. When she was first diagnosed (de novo metastatic breast cancer), her specialist nurse talked about palliative care at the hospice which had scared her, it was only when I chatted with her about the support she could have that she realised that palliative care is about living.

In hospital she talked about her children and grandchildren and about their plans for the future. A future without her.

When the time came to leave and I went to say my goodbyes my auntie looked up at me and held my gaze. There was no need to say that we probably wouldn’t see each other again.

“Now look after yourself ” she said.

“I’ll try” I replied

“Good. Love you”

“Love you. Thank you for everything and God bless you”

“And you dear, and you”.

We kissed before I turned and started to walk out. I glanced back and she smiled.

“Bye-bye, dear, bye-bye …”

Book review: ‘Ticking Off Breast Cancer’ by Sara Liyanage

When Sara posted a tweet asking if anyone would like an advance copy of her book to read and blog a review about, I didn’t hesitate to respond. I was attracted to and intrigued by the title. Having followed Sara on Twitter and read some of her blogs I felt I had got to know her a little. I had been impressed by her lists but I didn’t know much about her story. I had noticed her caring, considered, encouraging and honest approach and I anticipated a good read. I wasn’t disappointed. Ticking Off Breast Cancer is one of the best books I have read about breast cancer.

First things first, when the book arrived, I fell in love with the front cover. The colours, the fonts, the image … I wanted to open it and read it straight away but life had just thrown us another curveball so I didn’t have time to read and I put the book to one side.

I’ll admit I was a little apprehensive because I was worried that reading the book might trigger traumatic memories of my own breast cancer diagnosis and treatments. I chose to read the book on a day I had a hospital appointment at the breast clinic; my mind was already focussed on all things breast cancer on that day. Surprisingly, although it reminded me of some of the side effects of treatment I’d forgotten about, I also found it comforting because it reminded me I am not alone with these experiences, feelings and thoughts and validated them. I even read out a short excerpt to the consultant I saw to explain where I’m at

“Sometimes I feel like I’m on one of those long elasticated ropes at fairs that are tied around the waist and then you have to run as far and as fast as you can before the rope suddenly yanks you back to the starting point. I’m really trying to run away, against the resistance of cancer, but it has a hold on me and every now and again it yanks the rope and pulls me backwards”.

During my breast cancer treatments I lost the ability to concentrate enough to read, an activity I have enjoyed most of my life and have previously found easy. Even now, over two years since the end of active treatment it still takes me much longer to read than it did before so the fact that I read Ticking Off Breast Cancer in one day in between coffee and lunch dates and a hospital appointment speaks volumes.

I like the way the book is laid out, the pattern it follows, the structure with the quote at the beginning and the checklists at the end of each chapter. Sara shares her story using a chronological approach which is easy to follow. She skilfully draws on her story to provide helpful and practical lists and suggestions. There are lists covering almost everything from before diagnosis through to moving on at the end of treatments. When I was diagnosed I scoured the cancer forums on the internet for lists like these!

‘Everyone who goes through cancer has their own story to tell’ While Sara’s book is about her and her experiences of breast cancer when I read it I realised it is also, to some extent, about me and mine and possibly if you have had breast cancer treatments, you and yours. There are some similarities between Sara and my stories; we were both diagnosed in the same year, we were both in our 40s although Sarah is six years younger than me. We are both women who like so many women are used to keeping a lot of plates spinning and wearing many hats. There are also differences including being at different stages of parenting and in our work lives. As Sara points out at the beginning of the book

“Always remember that everyone is different. We have different diagnoses; different treatment plans and we react differently to treatment”.

Nevertheless, so many aspects of Sara’s story and the emotions and thought processes she describes so eloquently resonate with me. To name just a few, the dawning awareness and understanding that breast cancer is far more complex than we had previously thought; the loneliness and strangeness of living in a parallel world; the pain and subsequent soul searching over a friend who doesn’t get in touch during months and months of treatment.

Sara does not shy away from sharing about experiences during cancer treatments which may seem peripheral to outsiders but, if discussions with other people are anything to go by, are important to us who have lived experience. Our experiences change us and shape us. In the last chapter of the book Sara shares all she has learnt through her experiences of breast cancer. It was a list I could have written myself.

In the Appendix Sara helpfully lists reliable and trustworthy sources of information, so important as there are so many unreliable and untrustworthy sources out there. Last but not least, the book ends with a list of acknowledgments including a shout out to the wonderful online community of cancer patients.

As someone who has already gone through treatment for primary breast cancer it is the relatability of Sara’s words that stands out for me but I recommend this book to everyone, especially those who have had a cancer diagnosis, their families and friends as well as professionals and volunteers working with people affected by cancer. I would have found it useful when supporting others in the past and I know I will find useful in the future.

Thank you for writing this book Sara!

Letting the tears flow

I am awake in the night with a migraine and an upset stomach. I keep thinking about the person I knew who died from secondary breast cancer recently and about her husband and her children. She was diagnosed with primary breast cancer when she was the age I am now, two years later she was diagnosed with secondary (metastatic) breast cancer and now two years later she has gone. I find it heartbreaking. When I was diagnosed she supported me, we chatted about our families, they were our concern and now she is not here for hers.

Later on I decide I need to walk off the sadness I am feeling. I enjoy the beauty of my surroundings, the warmth of the sun on my skin, I see families out enjoying the day. I feel alive, happy and thankful.

I meet up with mum, my sister-in-law and 5 and 8 year old nieces at a café. I sit down and mum’s phone rings. She answers. It is my cousin. Gulp.

When the girls go and play mum tells us it is not good news, my auntie has been admitted to hospital as she has been struggling to breathe. She was diagnosed with secondary breast cancer (de novo) about seven years ago. She is in the ward I spent time on during chemotherapy. ‘They will take good care of her’ I say and I remember my times in that ward, the women I met there, their situations, their families, their children. I think about my cousins and their children. My auntie’s grandchildren. I find it heartbreaking.

The girls are excited when I ask them if they would like me to play with them. We look at the flowers and compare their beautiful colours, we choose our favourites. I like the purple ones. We look at plants and trees, at their leaves, the patterns and textures. We notice insects, birds and a squirrel. We dance and we run. I have fun and I forget about the pain and the sorrow. It is good to be here to do this.

Later, we’ve said goodbye and I am driving home. I think about my bittersweet day and I realise I am crying. I let the tears flow.