Autumn term, reflect, review, reset

Last week I finished reading a book called The Lacuna by Barbara Kingsolver. It was a book I found compelling and thought provoking. I found it hard to get into but it grew on me as I read it. It is a novel set in Mexico and the USA during the first half of the twentieth century but it covered topics that resonate with and are relevant to our time now, including descriptions of life under quarantine due to a polio epidemic

“The quarantine began at 1 am Monday, closing movie houses, skating parlors, swimming pools, and other public sites … This city of 50,000 souls is as quiet as a grave, as housewives stay home from shopping and our businesses and resorts see profits stolen by the epidemic”

Sound familiar?

How are you? and How have you been? are the questions I asked myself as I reflected on and reviewed the last four months.

Without question this has been a time of lament. Tragically this tiny virus has cancelled and curtailed life directly and indirectly around the globe and continues to do so. Just one example, in this country cancer patients have had appointments, scans and treatments cancelled or postponed, sometimes with devastating consequences, including for people known to me. Predictions suggest there will be many more extra cancer deaths over the years due to the pandemic which could have been prevented which is completely heartbreaking.

In the UK the ‘lockdown’ has been gradually eased and collectively and as individuals we have continued navigating a new normal in this unfamiliar territory. No one knows where this part of our life journeys will take us but I am going forward with a sense of gratitude for the life I have had this summer.

Family

During the last four months I have seen and spent time with my closest family members, children, parents, siblings, nephews, nieces, many for the first and probably only time this year. We made the most of our time making memories in our socially distanced garden get togethers. I enjoyed spending time in the garden with our dog. She was part of our family for about 11 years and she was the most faithful and wonderful companion.

Baking and cooking

I enjoyed baking and cooking … until I started developing new curves!

Garden

We are blessed to have a garden and I loved being in it this spring and summer. I enjoyed watching all the birds, especially our summer visitors, the swifts. At dusk I enjoyed watching the bats and the dragonflies and spotting the hedgehog(s?). I enjoyed growing flowers, chillis, tomatoes and lettuce from seed. Planting and nurturing, watching them grow. Harvesting and eating my homegrown produce. I enjoyed lying on a hammock bought in an end of season sale many years ago that I found in the garage loft. I’ve also enjoyed floating on a lilo in the tiny 8 x 5 foot paddling pool which had been reduced to such a low price that I had to buy it which is also just about long and deep enough at 2ft to swim in with a tether! I also loved our small water feature. I enjoyed sitting out on warm evenings in the candlelight. I enjoyed watching the moon and the stars, I enjoyed lying under the stars in my recliner to watch the Perseid meteor shower.

Countryside and beaches

As lockdown eased I enjoyed walks in the local countryside and the beauty and familiarity of it. I enjoyed noticing the changes through the season and I enjoyed seeing the wildlife. I enjoyed walks on the beach.

Participating

I met with friends and more recently small groups in our gardens. I also enjoyed being able to keep up and meet people online, including new groups of people. I loved the opportunity to access, connect with others and participate in a wide range of activities at home, including church, conferences, festivals, live streamed exercise classes and music events as well as support groups.

On reflection, I enjoyed the simple things this summer and I feel blessed and know I am privileged to have been able to have this time. I had the space to learn how to look after myself more. It helped me think about what is important to me and what isn’t. It helped me understand what makes me tick, who I am.

How are you? How have you been?

A photo taken on an early morning trip to the beach …

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.

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.