‘What they were like and how it made me feel’

A book I am reading prompted me to think about what I want to be like for others, about who I want to be, by remembering a time someone showed care for me. The point of the exercise wasn’t to focus on the specific person or situation but what they were like and how it made me feel. However, it did lead to me thinking about those specific people in that specific situation!

Even though there are many times I could have recalled, the time that instantly came to mind was, unsurprisingly, related to my breast cancer treatment. It was my first chemotherapy cycle and in the two weeks since my infusion I had been admitted to hospital for emergency treatment for the second time. I had severe neutropenic sepsis and I had been incredibly poorly but that is not the focus of this blog.

My focus in this blog is ‘what they were like and how it made me feel’.

Firstly, I remember a doctor sitting next to my bed asking about how I felt, listening and helping me sit up to take sips of water through a straw. Secondly, I remember a nurse who helped make me more comfortable. The nurse used clippers on my hair, I had a grade two and it was the most wonderful feeling to be rid of the hair that although cut as short as it’s possible to cut hair with a pair of scissors, was making my scalp so tender. Then the nurse helped me use a commode, wash and change into some clean pyjamas and brush my teeth before tucking me in with a heat pad to help the pain.

So what were they like? Attentive, caring, genuine, empathetic, present and warm. And how did it make me feel? I remember feeling enveloped in the warmth of love. Of knowing that I mattered and not just to them, but to God. From an early age I have derived comfort from believing that I am loved by God, that I matter. That He cares. One of my favourite childhood songs which always helped me feel safe was ‘Jesus loves me this I know’ which is printed at the back of a book I was given when I was two years old.

The caring actions of that doctor and that nurse helped heal me then and as I look back, now too. I remember how very strange it was to find myself in that situation, a role reversal. As a family carer and a professional I was used to being the care-giver, the one giving support. I was used to being a capable and strong person not weak and vulnerable. However it was through those experiences as a care recipient when I lost so much, dignity, looks, independence and strength, that I truly learned about care and the difference care makes.

The memory led to me reflecting on other times in my life that I have had this feeling of being completely enveloped in the warmth of love of others, of knowing I matter. I can’t remember the faces or names of all of the people who have been there throughout my life, many who are long gone, but I remember their care and their love which always pointed me to and reminded me of God’s love. I am thankful for their legacy.

Breast Cancer Awareness Month

It’s the beginning of October which means it’s the beginning of Breast Cancer Awareness Month.

Before my own diagnosis with primary breast cancer I was already aware of breast cancer. Over the years I have known many people who have been diagnosed with breast cancer, including close family, close friends, colleagues and acquaintances. I checked my breasts regularly and had any changes I noticed checked by my GP who had referred me to a breast clinic on two previous occasions. At the school I previously worked in I sometimes covered lessons about the signs and symptoms of primary breast cancer.

Since my own diagnosis of primary breast cancer in 2016 and subsequent treatments my awareness has developed. This is largely due to my involvement in the breast cancer Twitter community, which I have found caring, encouraging and supportive, and in particular the work of Jo Taylor (@abcdiagnosis) who is an incredible patient advocate.

In 2016 and again in 2017 many of us in the breast cancer community thunderclap tweeted using the hashtag #BreastCancerRealityCheck. I have just taken a few moments to read through some of the tweets. Some of those people who joined in are no longer with us, which is heartbreaking.

With so many dying from metastatic breast cancer, one person every 45 minutes in the UK*, individuals and their stories can become lost but each and every one was a person of value and worth.

Metastatic breast cancer, breast cancer that has spread from the breast to other parts of the body, is often treatable but incurable. About 5% of people with metastatic breast cancer are, like my auntie who died a year ago, diagnosed when their breast cancer has already metastasised but most people who are diagnosed with metastatic breast cancer have previously been treated for primary breast cancer, sometimes many years earlier. It is estimated that there are 35,000 people living with metastatic breast cancer in the UK*.

Jo who lives with metastatic breast cancer has produced two infographics to raise awareness of the signs and symptoms of metastatic breast cancer. As Jo explains in a recent blog post the median life expectancy following diagnosis of metastatic breast cancer is just two to three years but there is hope that with more research and improved treatments metastatic breast cancer can become a chronic disease. With that aim in mind Jo and others have set up METUPUK a metastatic patient activist and advocacy group. She has also produced a free book in which different breast cancer patients share their stories and which provides information, including infographics.

There needs to be more education. There also needs to be more research into treatments for people with metastatic breast cancer and when new drug treatments are developed there needs to be greater drug access and funding. I also believe there needs to be more care and support from specialist nurses for people living with metastatic breast cancer when they need it.

Please check out Jo’s Twitter account @abcdiagnosis and website and support her work to raise real awareness https://www.abcdiagnosis.co.uk/

*https://breastcancernow.org/about-us/media/facts-statistics

In the last week

(Photo taken on the last evening of our holiday)

In the last week the days have become shorter than the nights. The weather has changed from dry, sunny and warm days to stormy, wet and cold days. We’ve gone from enjoying the outdoor life to being indoors. From being on holiday to being at home. From supporting friends who have been facing difficulties to being supported. From praying for others to being prayed for.

In the last week I’ve been reminded that life can change in an instant, that life is precious. I’ve been reminded that we cannot be independent, but that we are beautifully, wonderfully interdependent. Dependent on each other and dependent on Christ, who is love.

As I go gently into my day, I am thankful.

With peace x

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 …

Nancy’s Point Blog Hop Challenge 2020

Many thanks to Nancy for the opportunity to participate in her Blog Hop Challenge.

I thought I had a few more weeks to write then realised the deadline is tomorrow!

1. Who are you? Tell us whatever you want about you and your blog.

My name is Julia. Wife, mother, mother-in-law, daughter, daughter-in-law, niece, sister, sister-in-law, auntie, friend, neighbour.

Who am I? is a question I’ve thought about a lot in the last ten years. During this time my children have transitioned into adulthood and I have transitioned through several distinct occupations and roles: Parent/cover teacher/part-time student; student/trainee social worker on placement; social worker; 24/7 family carer; cancer patient/family carer, cancer survivor/family carer, cancer survivor. I’m now at another juncture and maybe starting something new soon.

I am passionate about people and relationships. I am a Christian. I am held and hold. I am loved and love.

On my blog I talk about my experiences, I am honest and open and talk about things that are difficult. I believe personal narrative is powerful.

2. What has been your biggest blogging challenge during this pandemic, and how have you been tackling it (or trying to)?

My biggest blogging challenge during this pandemic has been finding space and time to quietly sit and write as I’ve had constant company with my husband working at home. He has been in Zoom meetings from early to late which has reminded me of the corporate life I left a long time ago. It’s been fun to meet some of his colleagues and good to be at home together.

I haven’t tried to tackle it as this is how life is for now …

3. What is something you’ve accomplished with your blog that you’re most proud of? 

I’ve been blogging for nearly a year now. I’ve been both honoured and humbled that other people have read my blogs and that Marie has included my blogs in her Weekly Round-Ups . I have written a variety of blog posts including book reviews. I was delighted that @coldethyl2 accepted my invitation to write a guest blog to review a book my cancer story was in called 100 Stories.

4. Share two of your best blogging tips.

Keep an open-minded approach and read other blogs. Reading other blogs will help you develop your own unique style of writing and voice. Keep it real. Also, when you have an idea for a blog post make a note of it so you don’t forget about it. For simplicity I just keep a record of the subject in my drafts blog posts folder.

5. What is one of your blogging goals this year?

I’d like to plan to post more consistently, rather than in fits and starts.

6. When things get hard, what keeps you blogging, even if not regularly?

The encouragement and support of others.

7. What is a dream you have for your blog?

I’d like it to be a springboard for aspiring bloggers. If you’d like to have a go at writing and would like to write a guest blog post please let me know!

8. Share a link to a favorite post you’ve written that you want more people to read.

I’m not sure I’d call it a favourite but a lot of people told me they found my blog about grief helpful.

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Good enough

This week I’ve been thinking about the concept of being ‘good enough’ in relation to being a cancer patient.

When I was going through chemotherapy I had almost every possible side effect, including severe neutropenic sepsis and there were times I couldn’t even sit up. At times I needed help with just about everything but I heard about other people who were going though or had gone through chemotherapy who were more or less able to continue their usual activities, including parenting and working. Some people even talked about running during treatments. Even though I knew it wasn’t their intention, when I heard or read about their experiences I found it difficult not to compare and I felt like a failure, as though I wasn’t a ‘good enough’ cancer patient.

It was not a question of mind over matter or willpower. I had at least as much motivation and as many reasons and responsibilities to continue my usual activities as anyone else and I was shocked to become so unwell.

There was nothing I could have done differently that would have prevented the severe side effects including neutropenic sepsis that I had during my first and subsequent chemotherapy cycles which weakened me.

Now with the benefit of hindsight I realise I was ‘good enough’. To keep going is good enough and keeping going took great determination and effort. It was in itself an achievement.

I had to finish my chemotherapy course early because it was decided it was too dangerous to continue. Primary breast cancer, that is breast cancer that hasn’t metastasised (spread) to other parts of the body, doesn’t kill people but the treatments are risky and sometimes the risks outweigh the benefits and treatment plans have to be changed.

During the two months between finishing chemotherapy and starting radiotherapy I worked hard to gradually and slowly start regaining my stamina and strength. I was able to complete the rest of my planned treatments.

During the last three years, I’ve become acquainted with and friends with more people who have or have had breast cancer(s) and other cancers. I have learned the value of giving and receiving support from others who understand. I have heard and read many cancer stories and I have realised many people don’t feel as if they are ‘good enough’ cancer patients which is not surprising when you think cancer cancels and curtails and threatens us at the core of our being.

I believe many of us need to be kinder to ourselves, to cut ourselves some slack, to stop being our own worst critics. It is impossible to compare. As people we are all different with different backgrounds and circumstances, different life experiences, different areas of expertise, different gifts and talents, different bodies, different cancers and different treatments, even different chemotherapy regimens and doses. We have different characters and personalities. I recognise that although I can’t do all the things that other people can do, that’s okay. They can’t do all the things that I can do and that’s okay too. We all bring something different to the table that has value.

To sum up, when it comes to being a cancer haver/patient/survivor, I was always ‘good enough’. We are all ‘good enough’ and we don’t need to prove ourselves to anyone else.

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.

Exercising at home

It’s great if you can get out to exercise but for some people that isn’t an option, especially at the moment with c19. However, it is really important to exercise, to move as much as possible. Exercising is good for our health, mental and physical.

As the NHS advises in its guidelines‘Adults should do some type of physical activity every day. Any type of activity is good for you. The more you do the better’ (My emphasis).

During the last couple of weeks I have been thinking about the exercise we can do at home and looking out for exercise at home ideas and tips that I can share with you, some of these are indoor exercise, some can be indoors or outdoors and others are outdoors only. I also asked for ideas on Twitter, thank you so much to everyone who replied (see end of blog post).

Online classes

Many fitness instructors have started online classes accessible via zoom for a small charge.

For example, Zoe George, a specialist in cancer rehabilitation, pelvic floor function and spinal conditions is offering online classes accessible via zoom through her website Exercise Therapy Online where you can also find contact details and other resources. Over the years Zoe and her colleague Theresa have worked with the excellent John Le Vay Cancer Support and Information Centre in Ipswich hospital to provide exercise classes for breast and prostate cancer patients. I loved the breast cancer rehabilitation exercise class I attended and have heard great reports from the men who have been to the prostate cancer rehabilitation exercise class. I also found their Breast Cancer Exercise DVD (available through their website) helpful in regaining movement and strength following treatment.

Online personal trainer

Online Videos

There is a great selection of free exercise routines available through the NHS Fitness Studio website .

There are also many free exercise routines on YouTube. These are some of the channels I have come across which I like, many provide options for a range of abilities and fitness levels.

Others have suggested

DVDs

I have several old exercise DVDs at home which I’ve dusted off. If you don’t have enough data to live stream classes or use YouTube DVDs might be a better option for you.

Apps

There are apps for just about every activity under the sun. I haven’t explored any exercise at home apps but you might find something helpful.

Ball games

There are lots of things you can do with a ball, by yourself or with others. For example, bouncing or kicking or throwing a ball against the ground or a wall. Alternatively you could buy a basketball ring, football goal, net etc.

Bowling games – Bocce/boules/pétanque/skittles

Cricket

Perhaps using a rebound net.

Croquet

Crosstrainer

Dancing

By yourself, with others in your household, using apps, dance mats, games, with others on zoom. Perhaps learn a new type of dance.

Exercise bike

Perhaps using an app like One Pelaton. If you don’t have an exercise bike you could buy a stand to convert your usual bicycle.

Fitness Tracker

There are a lot of fitness trackers on the market. I use my Fitbit to monitor my exercise time, heart rate, sleep and steps. The app offers a Premium service which gives you access to all kinds of health and fitness tips.

Gardening

If you have a garden, gardening is a great way to exercise.

Golf

Perhaps using a small practice net.

Hoopla

Housework (!)

Hula hooping

Racquet sports

Practice hitting a ball against the ground or a wall or you could buy a rebounder. The soft tennis sets are a great option if you want to play indoors against a wall.

Resistance bands

Rowing machine

Running around your garden

Skipping

Step Aerobics.

I have been inspired to try using a step after seeing Jo Moseley’s (@Happyhealthy50) Everest in a Month (@Everestinamonth) challenge.

Swimming (in my dreams)

Swiss Ball

Even if you just sit on it while you watch your favourite tv show you’re working your core muscles.

Table tennis

Trampolining

Full size or mini

Weights

If you don’t have any weights, use a tin of tomatoes.

Walking around your home or garden

A few other thoughts I’ve had ~

Before buying anything new think about what you might already have in your home. I found an ab cruncher, badminton, racquetball and tennis racquets, a basketball, a football, tennis balls, racquetball balls and shuttlecocks, a boules set and weights in the garage and the loft.

If you don’t have, don’t want or can’t afford equipment and/or have limited indoor or outdoor space and have to stay at home the online videos are possibly your most accessible option. That’s why I love them so much. Equipment can be expensive so only invest in it if your budget allows and you’re sure you will use it. Or perhaps ask around, one of your contacts might be only too pleased to free up some space by loaning, passing on or selling their equipment or DVDs.

If you live with others, involve them. Have fun together.

Be kind to yourself. Do what you can, we are all different. Listen to your body and pace yourself. If you have had cancer treatments you might find the Untire app helpful to better manage your fatigue.

Perhaps if exercise has negative connotations for you, retrain your thought patterns. Perhaps think of doing exercise as a gift you’re giving yourself to practise self-care and to self-nurture. Try to enjoy feeling your body move.

I hope you find these ideas helpful, even if it’s just to give you another exercise at home idea of your own. If so please share your ideas with me in the comments.

Many thanks for reading x

(With special thanks to all who responded to my tweet: Ali (@AliGardnerHHH), Anne (@Ewigkeit1), Belinda (@goldengirlnot), Cat (@cat_colourfield), Debbie (@debbieblissnews), Dennis (@Denniskeim), Erin (@buttersy), Georgina (@flowersorcakes), Jayne (@jaynergeorge), Jennifer (@JenniferTester8), Jill (@JB39832600), Julia (@JuliaClare11), Juliet (@julietfitzy), Karen (@kjr2508), Kay (@KayCurtin1), Kristen (@KBlankenship826), Lisa (@lisadawnloft), Lori (@Lori_Burwell), Lucy (@traybakequeen) Maggie (@Maggie_Roch), Mia (@BSBreastcancer), Neeta (@NeetaFitness), Noirin (@NoironONeill), Northerner181 (@Northerner181), Peggy (@PeggyB63), Racheal (@raquelwench), Ruth (@ruthdal), Shiona (@Shomelamona), SurvivorSAKE (@SurvivorSAKE), Tracey (@TheReIvention3))

This morning: Lament and thanks

Lament

This morning I woke up with a profound sense of grief and loss.

This morning I let myself grieve the loss of my pre-cancer life. I let myself grieve the loss of my pre-cancer body. I let myself grieve the loss of my pre-cancer hair.

This morning I let myself grieve the loss of my pre-coronavirus Covid-19 life. I let myself grieve the loss of being able to spend time with my family and friends.

This morning I let myself grieve all the losses.

This morning I let myself lament.

This morning I reached out to a friend for prayer. She responded with a written prayer. I read it and I prayed. Almost imperceptibly my focus shifted.

This morning I remembered the times I woke up with tears on my pillow as I waited for that first chemotherapy. That fear of the unknown. That visceral fear.

This morning I remembered the words that comforted me then:

“You’ve kept track of my every toss and turn
through the sleepless nights,
Each tear entered in your ledger,
each ache written in your book.

(Psalm 56, The Message)

This morning I pondered the meaning of these words. I am not a theologian but I believe God cares intimately for me and us and our suffering world. I believe God cares and remembers our sorrow as if he kept each tear in a bottle.

This morning I remembered that

“He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.”

(Revelation 21, NIV)

This morning I know I am loved.

This morning I know that ultimately all will be well.

Thanks

This morning I am feeling thankful for lament. I am feeling thankful I am able to able to connect with my grief and my loss.

This morning I am feeling thankful for my post-cancer life, my post-cancer body, my post-cancer hair.

This morning I am feeling thankful for my life.

This morning I am feeling thankful for life.

This morning I am feeling thankful to God, for his care and his love.

This morning I give thanks to God. Like a child with a loving parent I am held in his loving arms.

This morning.

Summer term: reflect, review, reset

So the Easter holidays have come to an end and it’s the beginning of a new school term unlike any other.

Earlier this week as I hung out the washing I noticed how quiet it was. Normally I can hear children playing in the school playground nearby but at the moment living in lockdown means most children are at home with their parents.

As I look back and reflect and review over the last four months I am choosing to focus on the highlights, the particularly special times.

January

Early in January I went to the 100 stories book launch in West London. I hadn’t been on the train into London for four years, since my cancer diagnosis, and decided it was a perfect opportunity and reason to have an overnight city break with my husband.

While my husband was at work I spent time exploring Covent Garden and the British Museum and the area around it. In the evening we took the tube across London to go the Maggie’s Centre at Charing Cross Hospital. Maggie’s Centres provide support for people living with and beyond cancer in a ‘home’ environment. I’d never been to a Maggie’s Centre before and I was impressed. I’d never been to a book launch before either! Or written for a book…It was great to meet Helena, the author, and a few people from the cancer community who had also contributed. Like most people I’ve never wanted to be defined by my cancer experiences but in some ways it’s inevitable because it’s a part of my life, my journey and my story. The online cancer community is my tribe and one I am thankful for. Day or night there is (reciprocal) support if and when I need it.

At the end of January we had a great time when we visited family for a belated ‘Christmas/New Year’ get together.

February

Towards the end of February I went away to North Wales with one of my good friends. We had some amazing outings. The highlight was a trip on the Welsh Highland Railway through Snowdonia to Caernarfon. I love North Wales, the people and the incredible scenery; the beaches, snow covered mountains, streams, rivers and waterfalls. We also enjoyed coffees and meals out as well as evenings in around the stove with her daughter’s cats (we were cat and house sitting), the friendliest cats I’ve ever met. Bendigedig!

March

By the beginning of March it was clear that Covid19 was starting to become more widespread in the UK. I carried on with most planned activities for a while before deciding to stay at home apart from essential trips out and walks. I managed to spend some time meeting up with a few friends I hadn’t seen for a while and had mum and dad over for Sunday lunch before the lockdown. Good memories!

April

Because we couldn’t be with our family over Easter I found myself having more time to reflect on the Easter story.

We’ve adapted. Many of our regular activities are online now so we’ve been able to continue with a familiar routine and stay connected and meet with others online and on the phone. We’ve enjoyed remote meals with our family. I’m trying to ensure I’m as fit and healthy as possible by appreciating and enjoying good food and exercising (via YouTube). I am relaxing by baking, gardening, reading and writing. I am limiting how much news I expose myself to and when I expose myself to it. When I feel myself being drawn down I shift my focus. I am enjoying nature; birds, flowers, the lengthening days, warm sunshine, the moon and stars. I am thankful for those who care.

Life isn’t always easy. During these months I’ve had the usual migraines, aches and pains which are especially bad when I don’t pace myself as well as I should and also I’ve had the usual colds, infections, mishaps etc. There’s also been a lot of difficult news, and we’ve waited on tenterhooks as those known to us have been admitted to hospital. There’s been heartbreak and hope. Most people are pulling together and I’m thankful to all those who are playing their part, often quietly. Along with everyone else’s, many of our plans for this year have been cancelled or postponed: From the appointments at hospital to family celebrations and get togethers and holidays.

I find the long term and wider impact of this virus too much to think about. As it says in the Bible in Matthew 6 ‘…do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own’.

If you are struggling to lift your gaze at the moment perhaps have a look at your camera roll and remember some of the good times you’ve had or start taking some photos to look back at in the future.

With love x