Sending thanks for all the kindness, cheers 🥂

 

The experience of kindness 

It’s the time of year when amongst the stress of shopping and planning and paying for Christmas, there are the lights, the music and the kindness that make midwinter exceptional. My ability to enjoy this time is dependent on my ability to balance these polarities. I started to speak about my Mum recently who died five years ago and suddenly the seal on my emotions burst and the tears came. They were tears of loss which were unsurprising but beneath that was so much more. And generally it’s packed away at the back ot the wardrobe, never to be examined. Well at least not with an audience. I’m a proponent of the talking cures but maybe a wee bit guilty of not always engaging with it myself. 

As regular readers know it’s been a hard year. Two lots of surgery and a course of chemotherapy. And it’s the year my cancer moved from curable to hopefully manageable. A gentle way to say it’s stage four as the cancer has spread from my breast to my liver. It’s not large and is not giving me symptoms but I’m in the world of crucial scans and breath held as you wait for results. Early January is the next big one and I’m a bit scared. There I’ve said it. But I’m not going to focus on it over the festive season. Christmas is busy, fun and poignant too. Our Ukrainian friends have become part of the family, as this time has confirmed. They enrich our lives but we are very aware of the challenges that are back home and the mixture of feelings that accompany sharing in the happiness of our Christmas. 

The world feels such a difficult place this year in particular with Russia’s attack on Ukraine, the poverty worsened by global effects as well as political decisions closer to home and the evident suffering across the UK. But it’s been important to celebrate all we have and all we are with the people we love. And in the midst of the despair for some there is kindness that makes every day better. 

I’m reminded of the carers who help me on weekday mornings. Not only have they shown me care and kindness, they’ve become dear friends too. And the special family who help us in the house garden and even the animals are a precious part of our lives who brighten the day and week. 

We’re so grateful to all of you who have helped us this year, especially our family, friends old and new and all the health and social care services that I /we engage with now. In an NHS and social care system that is under enormous pressure we have met skill, compassion and a timely service when needed. Maybe I’m just lucky ( :0) or maybe many services are often much better than headlines would have us believe. Don’t get me wrong we definitely need more investment in health care and social care, including paying them better. But it’s important too to recognise and give thanks to where it works well. 

So I want to end this blog as 2022 closes too, saying thank you to everyone who has touched our lives this year. You’ve made it special and helped us be able to look forward with some hope into 2023.

Wishing you all a very happy festive season and may 2023 bring you all kindness in its many forms💕. 

Breast cancer is a thief…

 

The view from the cancer assessment unit above, the bonus of a trip to the oncology centre in Edinburgh! 

I wrote the poem below in October which as anyone affected by breast cancer knows it the breast cancer awareness month. I tried to avoid the cliche of posting this then. As breast cancer doesn’t go away come November. It’s there all the time, even when treatment is over. Of course as time passes it fades from the forefront of your thoughts and becomes a background hum you can’t quite switch off. And the hum gets louder as new scans come around or unexpected triggers hit you in the solar plexus. Andrew once said after an appointment which although reassuring was stressful, he reflected “it never goes away”. It’s the fear that is so easily triggered especially if the cancer advances to secondary breast cancer. I’m regularly at the oncology department now and most times there is something that worries me. My most recent is anaemia after starting the new drug. 

I’m a sleepysaurus and indulging in audio books and Netflix. Any recommendations are welcome, by the way! But Christmas is coming and I’ve been doing my best to plan ahead. I know it will be fun and I’m determined not to get stressed! But it's hard to think of the many people who approach the holiday worrying about money, missing relatives from their homelands or trying not to think that these special times are now numbered. I’m trying to do my best to help in whatever way we can. But it’s the connection I value at these times, not gifts or groaning tables of food uneaten. It’s important to remember that when I fret about gifts or when I feel tempted to over order food! 

This year when we’ve seen such a fractured world and deepening poverty and for me personally i’ve had to face  the spread of my cancer, time with those I love is the most precious gift of all. 

So here’s  my poem straight from the fears and the love at the start of advent.

Breast cancer is a thief

Stealing health

Stealing peace of mind

Stealing future dreams

Breast cancer changes your body

Changes your hopes

Changes your friendships

Changes your energy

Breast cancer makes you grieve 

for so many things

But - cancer showed me I’m loved

and I’m so grateful for that

At the end -and the beginning and all way through 

it’s really only love that matters.

The Struggle Bus

 

                                                            Image of the struggle bus 

I’ve been quiet for a few weeks online. I’ve got new medication, followed by covid then antivirals, antibiotics and a cough that scared the horses that are all to blame for the radio silence. 

I’m scared to say I’m improving but I think I’m having more good days. Strangely the virus seems to have increased my pain so as well as my cocktail of pain killers, self management techniques I’m adding in CBD oil. I suspect it’s helping and like everything it’s a learning exercise. Like life itself really.

A diagnosis of covid changed plans yet again. How much this pandemic has shaped our lives this last few years. As always our friends and family were attentive and kind. We realised after we were both recovering how worried others were for us but we both realised that we weren’t too bad. Although it’s been slow to cast off the tiredness and for me pain has been a daily and nightly challenge. A weekend away has intensified the fatigue and pain as well. It’s also made me realise that holidays far from home are just no longer sensible or even desirable. 

It’s a loss realising that but it’s also a relief. I’d been torturing myself with ‘shoulds’ and now there is peace in accepting what is my reality. But we live in a stunningly beautiful city and country with so much still to discover. And with some good fortune sometime still to explore it. So long as we can find accessible places to stop! That frankly is a whole other story or blog. 

I heard a great saying recently -I’m on the struggle bus-. I’m definitely on the struggle bus just now and like too much in this world, it’s definitely not accessible! 

You see when things are accessible I can enjoy life just like everyone else. So credit to the Usher Hall in Edinburgh. Yesterday we went to see the Belgian National Orchestra playing a few classical pieces, most notably the Sans-Saëns Symphony No 3, the ‘Organ Symphony’. We had an amazing seat and simply wonderful experience. When access is good I feel relaxed and equal in the world. Frankly it shames us all how unusual that is my experience. 

Me waiting in the concert.

The best view of the orchestra.

Who dreamed of being a princess?

 When I was a wee girl I never dreamed of being a princess. For years I wanted to be a cowboy. In particular I wanted to be a certain Cheyenne Bodie-a good guy in the main. Maybe I just thought he was big and handsome but I’m told I wouldn’t answer to anything but Cheyenne for some time. I grew out of it as you will have gathered but never wanted the princess look or life ever. Perhaps that meant I was never likely to be pro-royalty. Mostly they didn’t interest me and as a concept I believe an inherited monarchy is very outdated for our times, as well as a barrier to a fairer society.

But nonetheless I shed tears yesterday when the Queen died. I’m 66 and she has been there all my life. A constant, a symbol of loyalty, duty and service that seem so lacking in many in public life. I saw her twice in my life. Once we queued up as a family along the Royal Mile in Edinburgh during one of her yearly visits to the Capital. On this occasion she was in a royal carriage moving slowly between the Castle and Holyrood Palace. Perhaps I was even waving a flag as so many have done before me, I don’t recall. But I do remember being deeply disappointed. Because she didn’t look like a Queen at all! There was no bejewelled dress, no ermine cape and worst of all, no crown. She looked like my Mum you see. Now my Mum was a pretty woman and always looked nice. She was always well turned out! But not like a Queen. Queens shouldn’t look like your Mum. I went home very deflated. By the time I saw her for the second time, I was prepared to see her without a crown or even a tiara. It was at the Royal Garden Party in Holyrood. She was in the distance and I wasn’t one of those selected to be introduced so she was a distant figure in the crowd. 

She still looked like my Mum. My Mum was much the same age and they shared hairstyles from the glamour of the 1940s and 50s to these later years when the soft white curls were kind to their older profiles. My Mum died five years ago now and there is no doubt some of my tears yesterday were for her too. And I wanted to call her to reminisce and see how she was. Grief is never simple. I’m sure many yesterday had great empathy for the family gathering together hoping to get some final moments with her. Those journeys are so painful in their urgency coupled with dread of the letting go. 

Of course grief has been especially present for me recently. Knowing I now have stage four cancer has triggered my own grief. I’m trying to make sense of this time and feel a drive not to waste the time I have. I’m worrying for my family and how they will be once I’m gone but I know they will be ok in time. There is a selfish part of my grief as I don’t want to lose them. But that is life and loss and if I allow myself to sink into this grief alone, I waste this precious time. I’m determined not to do that but also I know to allow a place for my grief. 

So as I grieve for the Queen my tears will be a complex mix, like most of us. Tears for her loss and her family’s too, for this fragile country and what will become of it and for ourselves triggered into recognising our own grief. As she reportedly said herself, “Grief is the price we pay for love”. So in this blog I’m giving thanks for her life as one well lived and for my own family, those who have passed and those so precious to me now.Every hour with my family and friends will all be treasured. 

Another club I don’t want to be part of.

I have started this blog a few times. At last here goes. I wrote the last blog unaware that I would be about to have a shift in my own cancer experience. I’ve had many new diagnoses in the last few years. And for all the impact each one has had, they’ve all been remarkable in that they have been localised and therefore primary diagnoses. That means they have not spread beyond my breasts. True I’ve been battered, bruised, had breast removed and reconstructed and then reduced by cancer again but the still the cancer stayed locally. Until now.

A scan earlier this year had suggested I might have had metastases in my hip but that it was static. In order to be sure of that it was repeated two weeks ago. And yes it had remained static. Phew! But…..and it’s a big but…

I have metastases in my liver now. Now that, I wasn’t expecting. In short it means the cancer can not be cured- but it can be treated. I have metastatic breast cancer-another new club you don’t want to be a member of. 

I’m to be started on a parp inhibitor soon that’s had good success in my type of cancer. When I worked for Breakthrough Breast Cancer ( now a merged part of Breast Cancer Now) as the director in Scotland, these drugs were being developed as a result of work in the research labs, along with CRUK. We celebrated these as true breakthroughs and I feel deeply grateful to now benefit from them too. I’m hopeful still and resolved to take a stage at a time BUT not delay doing any fun things I’m keen to do. A few people have asked how I am, and I’m not sure I know. Mostly I feel sad.

Today I got an email from Breast Cancer Now inviting me to Wear it Pink. I’m as likely to wear it pink right now as I am to fly to the moon. I understand these are important fundraising activities for the charity. And these are the funds that support the future breakthroughs that will save lives so please please support them. But if the only way to do that is to prance around in a pink tutu or similar then count me out. 

In spite of my news I’ve not really cried. It doesn’t feel real but I know it’s making memories that will fell me like a punch in the stomach. Or when I see my loss echoed in someone’s face as we speak of my uncertain future. I’m glad to cry, it’s true it’s a release. And so is laughter. You will probably read about both of those if you stick with reading this blog.

Many of you have read this for years, old friends tuning in and now and again, getting in touch to say hello. Thanks for being there, our hidden cheer leaders! 

Unexpected grief.

Unexpected grief?

There are occasions that catch my emotions in such an unexpected way and  I was reminded of that when Olivia Newton John died recently. Of breast cancer of course. Last time I thought of her in relation to cancer was when she told the world ( and amazingly the whole world was listening) her cancer had returned but that she was going to beat it. All the war analogies followed and I felt so let down by her. 

She could instead have told of her fears, the impact of treatment, even anticipatory grief but no instead for me at least it sounded like denial. Why should that matter? It could have been an opportunity to talk about when cancer returns. To talk about how it feels when the pink ribbon is no longer your symbol of recovery. To help all those people who live with metastatic disease ( when the cancer returns and is in a different part of the body) be seen and heard. 

But who am I to judge others practicing denial. It’s a useful defence , just not in the long term. Her fame through the film ‘Grease’ was captured in THAT cat suit. We know female actors are so judged by their appearance that admitting vulnerability is extremely brave. And why should she be brave? 

So I grieved for her and let go of my disappointment. Her legacy for me, nonetheless, will be her goodness that radiated from the screen. May she rest in peace and her beauty forever captured and celebrated.

In the years since my first diagnosis with breast cancer several famous people have died of breast cancer. I have a very visual memory of sitting at the breakfast table, listening to the news and hearing of Linda Macartney’s death. They then went on to play the theme from the Titanic. I sobbed and tried to stifle any noise that might have alerted the children to my distress. Just Robbie, the dog came his cold nose nudging my elbow. I couldn’t speak and the grief sat in my chest threatening to suffocate me.  It took me some time to fully understand that response. Because I was a George or John fan, not Paul you understand. I didn’t even cry for John like that, even though I remember what I was doing when I heard that news too. Why Linda? - I didn’t even like her sausages ( much improved since then I must say) or indeed her singing. I thought Mull of Kintyre was the last straw for me and the McCartney’s. But ultimately what finished me was the knowledge that despite her wealth and fame she was just like the rest of us. The cancer was not defeated and she died far too young and was taken from what seemed to be such a loving family. And if it took her by extension of this, it could take me from my family too and I would be powerless to change that. It was perhaps the first time I had allowed myself that truth. So Linda helped me confront that truth. She too left a great legacy not least in her commitment to vegetarianism. 

But most of us won’t leave any legacy and that’s ok, it has to be. We’ve got up most days and ploughed on with treatments that are barbaric on occasion and often causing daily side effects whilst knowing you will be on them for 5-10 years or forever without knowing if they help. That takes courage and belief in your future that’s hard to sustain long term. 

It’s hard when we feel we need to live up to the idols. Be they icons of the silver screen or who tackle a moonwalk or wear it pink with a determinedly cheery smile. It’s not a competition. We are just walking each other home as best we can. And that’s enough. 

For the carers

 Caring for each other

I’ve taken a big step this month and I’ve got help from carers, especially to let Andrew get out without worrying. I’ve found it hard. It’s an acceptance of my situation, a dependence on others, accepting strangers in to your home and that’s just the start. There’s an emotional toll I hadn’t anticipated; a rollercoaster of trust and testing patience for me at least. 

I’ve decided to have direct payments but chosen to do it through an agency so I’m not acting as an employer. I didn’t quite anticipate the scale of the task if I’m honest, I was drawn to having control over what support I want. 

But these times of shortage of carers that frankly is an illusion. I started out hopeful but soon learned the complexity of my needs were a stumbling point, they really want a daily/weekly commitment that fits with a business model.That’s at odds with a person-centred model and reflects that profits drive    decisions in so many of the agencies. 

It took several dry runs to recruit an agency at last. I thought I had one and they failed to supply a carer three weeks in a row, telling me the afternoon before. Frankly I was angry and totally lost trust. I won’t name and names and I do believe these are exceptional times but the lack of honesty was what made me cancel the contract ( which was all loaded against the client, requiring for example one month to cancel a visit or you had to pay!). 

But fortune favours the persistent and following a request through care sourcer, a website shared with me by the Occupational Therapist, resulted in a visit by the manager of an agency which puts quality care at its centre. All the agencies say that but here I’ve seen this in action. They speak a language of compassion and they really show it too. Many of them are originally from Africa or other parts of Europe and I love their warmth and care and that they bring diversity to my life which has shrunk in recent times. I found it stressful at first, having to explain so much and seek the right balance for us all. But it gets easier and they bring cheer and kindness too. What’s not to like. 

I remain on chemotherapy but haunted by bladder infections which take me up and down a ladder of well-being ( more down really). I’m beginning to wonder if I can keep this going. In the main the team in the chemotherapy ward are great, quietly efficient and thoughtful but we met the exception to that last week.

And it’s an issue so many disabled people will recognise when they interact with healthcare, the people who think they know better than you and your carer do about how you mobilise and function. A sort of nursesplaining( I’m very experienced a phrase that was used when they clumsily tried to help me into a chair). They made me have a minor panic, standing right in front of me, rather than asking what I needed. They then bossed around Andrew like he didn’t know what to do either. We were both angry and it damaged trust ( that word again)and kindness was sorely missing. She apologised in a fashion and I suggested we start again. I think after that she did her best but really it wasn’t good enough on a ward when there is so much vulnerability. I found myself feeling sorry for her, sensing she knew she was falling short. 

But the reassuring thing was that she was an exception and that reflects well on those who do it well most of the time. It’s a busy and relentlessly emotional place to work ( and to be in as a patient), kindness and care need to be the glue to hold it all together including for the team. 

So this blog is to give thanks for the carers whoever they are, especially the families steadily alongside us, unsung and without reward. Thank you, all of you. 

Summer days, drifting away

 

Summer days drifting away 

When I did grief counselling it was striking that the bereaved often found summer worse than winter, when adapting to losing their loved one. Winter allows us to coorie in at home, the rest of the world closed off from our experience. But summer rubs your nose in the pain. Postcards from another world, of families, intact and making memories. The grieving sit alone, an acute longing separating them from how summer used to be. 

I recognise that feeling as my summer moves slowly. Bereft of holidays or breaks from the relentless slog of chemotherapy. On top of my chronic pain and disability, life feels like pretty hard work with little return. 

And yet I know it could be so much worse, as my treatment plan left out taxotere from the typical regime. With my existing conditions it was thought to risk tipping me over. I worried it would knock me down and I literally wouldn’t be able to get up again. So I’m not as sick as I might have been and I have my hair so far. But a recent urine infection showed my vulnerability and I struggled to get through. A relentless headache led to having a head CT to rule out brain metastases. Thankfully it was clear but it does hint at how things have been.

And over this time I see others making the most of their summer, having holidays seeing other places and I envy them their break from the routines of life  and seeing new horizons. I just feel the need to have something to look forward to. But with covid at the highest levels yet going amongst others is risky. I wear my mask against a tide of indifference and denial. 

My friends and family are literally keeping me putting one foot in front of the other. Also climate change temperatures ( even in  Scotland!) have taught me the danger of being too hot. I slept most of the days when the temperatures were over 30 here with no hint of a wind. I’m suited to cooler temperatures I’ve decided. But I watch the evidence of climate change with cold dread for future generations.  Being a political geek the recent democracy farce that is British politics would have acted as high entertainment. But with so much angst about cost of living rises and climate change it failed to entertain me but instead forces people like me to realise just how politics is separated from reality or compassion. Not much to laugh about there! 

So to all you who are struggling this summer, I hear you. It’s enough to get through for now and here are my very personal suggestions. Be kind to yourself and to others. That can be enough to change someone’s day and it will definitely change yours. Oh and eat ice lollies is my other tip, aside from midget gems they are my best guilty pleasure. Yes my life is a riot! 

Letting the light in.

 My heart, which is so full to overflowing, has often been solaced and refreshed by music when sick and weary.

- Martin Luther -

            Celebrating my daughters Race for Life-a jewel to treasure this week! 

I read this quote this week and it made me pause. There is no doubt that music has been an important part of my life. I’m a singer songwriter fan and also very much enjoy those whose voices are the instrument too, not necessarily together as that can be a hard ask! I notice, however, when I’m most stressed and anxious because of life and it’s travails I can’t listen in the same way. Somehow I takes up too much room in my head. Perhaps my brain is too overwhelmed by making sense of things or just getting through each day. 

At other times it’s been reading, my usual solace, that has left me. I have found I can’t concentrate or as soon as I dip my eyes I’m asleep but not now thankfully. I’m enjoying every form of reading but I need to be selective. I don’t do sad just now, nor dark, just escapism or thoughtful well written books are as much as I seek. And I do love an audible book, a story in my head to take me away to someone else’s life and place is a gift, especially on the harder days of chemotherapy. 

Mostly when I’m on the ward, I have the AirPods ( I treated myself to them at the start of treatment- wise decision) in place, some banal novel in my ear and my eyes closed. Otherwise I’m too open to others pain and it’s hard to witness. It’s the emotional pain really and that maybe my projection but mostly I sense that I feel it in them too. And it’s hard not to hear the stories. See the veins give in and fight back against the cannulation. The defeat as their story doesn’t unfold as planned, a scan showing treatment not working, a blood test requiring attention. A slow giving in to the cancer ruling your life and the gradual acceptance of it. Your own life reflected back in theirs, maybe differently but at its core we share that connection and it feels visceral. 

I wonder for the nurses who do this work day in, day out. Their kindness soothes us, their smiles and quiet competence a support to a world that feels unsafe in so many other ways. They are getting used to me now, pitching up in the wheelchair. We know where the real accessible toilet is after a bad start and I know the rhythm of the day and what to expect. The summer is moving past slowly and I’ve had to give it to just making it about getting though the treatment. Tentative plans for trips are now cancelled until later. Not only am I tired and vulnerable but covid again is everywhere. 

For many people I know they are infected with it for the first time and really don’t feel great. Thankfully they also so far have recovered over time. Honestly it feels surreal, we talk of life being back to normal but almost everyone I know locally has covid. It hasn’t gone away but masks are rare and any sense of shared protection has gone. It feels a lonely place to be. I do understand wanting life to go back to normal but it’s like a mass denial, supported by governments who have given up trying to have any semblance of control. Thankfully vaccines have helped and we aren’t back in those early days but for some of us the fear remains raw. And omnipresent. 

So I have listened to some music recently but it’s been Leonard Cohen! Does that reflect my state of mind? I some ways it does but that means a reflective place and there is no one like him for getting to the heart of matters. The Anthem is one I’ve often quoted and not only the words but the anthemic nature of the song brings a special  comfort in these difficult times in my world and the wider world too. ‘There is a crack in everything, it’s how the light gets in’. So here I am getting through, trying to let the light in and enjoying the things to celebrate, however small they are. 

Find the jewels

 

Find the jewels 

Find the jewels she said

Sometimes they are buried 

I thought. And I’ve little energy

for hunting. 

At times I find myself 

storing hurts instead.

A missed opportunity, 

a song unheard.

Too many moments lost

in what’s not happened 

trying not to long for

what has passed. 

But the jewels are there 

often in full view.

A new bird finding the feeder. 

The dogs joy at our homecoming.

And for this afternoon

The gentle snore of the cat

permeating the quiet afternoon 

light, creating a soothing rhythm.

It’s a cat and dogs life….

 

A week off chemotherapy helped me have space to fit in a short trip to family in the south Highlands of Scotland. As soon as you arrive the freshness of the air starts to soothe. It’s so valuable to switch off from the tyranny of blood tests, treatment, assessment, endless medication and so on. 

For a few days it was beautiful scenery and beautiful people. The pain was-is-still breaking through but less so. I can feel and see the concern on others when I struggle but I can no longer protect them from my worst times as they are too evident. My drugs get increased again and slowly I’ve improved a little. The steroid injection has started to kick in too. My body is less guarded and I’m relaxing a little more. So I’m sleeping-a lot! 

The other day after a busy morning on a webinar I spoke at, I snuck upstairs to change into a soft denim look jumpsuit ( like a posh onesie tbh). Getting changed is always a challenge so I rewarded myself with a wee lie down. Several hours later I awakened with a jumpsuit on inside out. I’m like the dormouse in Alice in Wonderland!  

But I managed to escape the jubilee celebrations largely so that was a win in my book. I’ve lived my whole life with this Queen as our head of state and like many in the UK I have an admiration for her commitment. But for me that’s about her. I now feel the need for a more effective head of state and I have great concern that whilst we have a hereditary monarchy we will never address the outrageous inequalities that are worsening in our country. The Platimun celebrations sit in stark contrast with the many who can’t afford to feed, clothe and house themselves or their families. When the government announced that we are to return to imperial measures I had to agree with our first ministers quote  ‘those whom the gods seek to destroy they first make utterly ridiculous’. Poverty isn’t inevitable in a rich country such as the UK. I’m so distressed by what I see happening around us. 

But one of the effects of cancer treatment is it by necessity has taken me inwards. I have little energy for external issues, I’m just getting through each day trying to balance pain relief, sleep, having good food and having some social life to keep me on the right side of sanity. It feels a selfish life but it’s all I’ve got for the moment. Our trip north taught me that the hoped for trip to Ireland in August was just not realistic. I’m sadly accepting that but hoping it’s just postponed. 

So life is at a slow careful pace just now. And that has to be enough. I’m embracing our cat and dogs approach to life. There’s much to learn from them. And from the simple joy of our Grandson chasing bubbles. 

When people don’t understand the impact of pain-it hurts.

 

                                                                   The Mood Moose 

Who knew how good a pain killer Naproxen is? Take note but protect your stomach! I’ve been on it since the start of the spinal growth caused me pain. It helped. So much so it was a while, until I started to lose power and mobility I realised I might need more help. Since then my cocktail of drugs has changed and varied but naproxen maintained. When I was told to stop it as I started chemotherapy ( I didn’t know till the day before) I thought ok some tweaks of other things and I might me ok?

I talked to a GP, we made a plan. The steroid holiday got me through the first day and a bit, by Sunday I was whimpering in pain by the evening, during the night and first thing in the morning. Monday morning came I contacted the GP. We topped up pregabalin and I asked re topical gels. Ask oncology- they told me to ask GP-. I asked the pharmacist-they told me to ask oncology. Wednesday I asked oncology, explaining my pain levels even when further increasing pregabalin and oromorph for breakthrough they double checked and yes topical NSAIDs are fine. 

At 9 next morning-Thursday by then-saw a nurse practitioner explained the above, got bloods taken for next days chemo and I said I’m considering I will need to stop chemo as I’m losing my little mobility I have left and fear it won’t return which would have a huge affect my health. I left with a promise to speak to the duty doctor and call me back. He did as promised and arrange a topical gel prescription through GP with the words we want you to be able to continue chemotherapy. 

Another day passed until the prescription was sent to the pharmacy. It was for 5% ibuprofen gel. I could have bought 10% over the counter for around £5 two days earlier but I thought GP could prescribe higher levels. I was incandescent! The nurse that morning who delivered my chemotherapy in the obligatory black bag (eek), said you must get on top of this pain level. She saw and heard me. The GP didn’t see me, didn’t understand and I have to assume doesn’t know about pain control. Believe me I couldn’t have done more to self manage last week. I had tens machines and heat pads daily, a relaxation session at Maggies and a Mindfulness class on line too. Frequent naps and lying down with a book during the day added in. Whilst also managing the nausea and many symptoms ( I will spare you those) of chemotherapy. 

I’m not looking for sympathy, I just want people to understand that when someone who lives with chronic pain is asking for help please don’t patronise them whether that is with platitudes or homeopathic levels of pain relief. 

The irony of this experience is I’m currently working with Versus Arthritis on the Pain, People and Place programme in Scotland. In one of my reports I quote from someone who was feeling rather desperate for someone to listen and respond to his needs. So he spoke for me too when he told me that, when someone believes me it makes all the difference. Is that really too much to ask for? 

Right I’m off to lie down now as I’ve finished my midget gems, an important part of my self care you understand. My family have done so many thoughtful things this last few weeks and months. One being a mood moose with home made banners attached. One says hug me, another wine o’clock ( more like boak o’clock currently) and the third is fuck off. Guess where I am currently? 

I love spring….

 I love spring. 

The hopefulness, the renewal of life, the colours, the surge of energy that even we humans can feel, leads to a sense of optimism. To be honest I’m in need of optimism when it seems my spring and summer is likely to be consumed by further treatment for breast cancer, while adjusting to new drugs for rheumatoid arthritis. A powerful cocktail but not the kind you would order for fun. There’s no jaunty umbrella, frozen fruit or champagne in this one. I’m trying to arrange things to look forward to but it’s hard to know what might be possible and when. 

So to cheer myself up I ordered a copy of the book Preventable by Devi Shridhar. I know how to have a good time! It is fascinating and well written  and captures the reader and in my defence I’ve long had an interest in public health. What is so interesting is how much a recent event like this has changed our lives and relationships too. It seems like another time we sat in lockdown, uncertain and fearful and yet even with falling numbers, the virus remains very present. Yes it’s more treatable but the daily death toll still speaks to its dangers. And yet we feel alien now when wearing masks in public. Lone rangers in masks against a tide of denial. How easily we can be blinded to the risks. But I do get that life has to be more than hiding from a virus. I really do understand that. 

Against that backdrop I’ve agreed to more treatment to try to prevent the cancer from returning. The oncologist is very sensitive to my situation and how much my health is diminished and so the treatment is geared to this and I know we all wonder how much I can manage to be honest. But I think I need to try at least as the BRCA2 mutation is proving to be a powerful foe. At times I think I’m deranged to even think about it. At times I think I’m deranged not to consider it. It’s exhausting. 

What has sustained me is time with my family; Easter fun, a wee holiday in Crieff and time with both my children and their families for respite and to keep safe while a very welcome wet room is fitted. Friends too have listened and cared while also discussing the huge issues, especially Ukraine, we see and read about daily in the news. I’ve finally accepted we can’t provide a home to a family at this time but I will do what I can in other ways. The small town of Aberfeldy ( now home to some of the family of course) is showing the UK how to do it. With big hearts they have opened their doors. My Grandson ( aged 3) knows the Ukrainian flag that flies from many local buildings and his Mum and Dad have given his kilt ( as well as other maybe more practical items) to a family newly arrived with a toddler. The sight of him speaking Ukrainian and strutting his stuff in a kilt is food for the soul. And don’t we all need that just now. There lots of soul food out there, I know. My plan is to have as much as I can when I can and for now that’s enough. 

And finally for something that’s worth a whole blog on its own, this month is Ehlers Danlos Syndrome Awareness month. People with EDS have a defect in their connective tissues. It grieves me beyond words that our Granddaughter was diagnosed with this is recent years. It’s such a devastating syndrome and frequently under diagnosed. It’s important therefore that there is more awareness so people can get the support they really need. So I share this for our Phia with so much love , I so wish I could take it away from her.  

Fifty shades of yellow….

 

Surgery number two is done. The wound is 50 shades of yellow - pause to take arnica-and healing normally in-spite of its raw red reminder of what’s passed. But with surgery for breast cancer I find, it’s the recovery from the anaesthetic that challenges me. And this time it’s two anaesthetics in just six weeks and don’t I know it. I’m on day 8 of a headache, treatment for a sinus infection, nose bleeds and wabbit on a grand scale. 

A fabulous Mother’s Day lunch in the garden was great fun and the family really made me ( and their Dad) feel loved. The sun and signs of spring have helped us lift our heads too. I recommend recuperating in the Spring, new life can be so uplifting and hopeful. Spring’s optimism convinced me I could go to a short concert with a theme of peace at St Giles. It was beautiful, especially the song for Ukraine and a bit too much in triggering pain and fatigue. Ah well, I’m still learning. 

And I’m now rationing news as the war continues in Ukraine witnessing the human fallout is so distressing. Sadly I’ve yet to see any Ukrainians come to Scotland but Ireland where visas have been waved ( as across the rest of the EU) they already have been able to offer homes and support to a growing number of people. Our friends who have done this have spoken of the emotional demand on them too as they experience a kind of secondary trauma. 

I was quick to register interest but as my health struggles remain so focal I need to be realistic in my offer. I know denial is one of my overused coping strategies! I still find my self concept hasn’t caught up with my reality. Illness can make me introspective and self care is by necessity all about me and I miss being able to do things for others. 

I guess my blog is in part a contribution I can make. I write this to let friends and family know how I am, to help me process what I’m experiencing and also help share the reality of my  life with cancer ( as well as disability of course) and it’s impact. Breast cancer in particular is now a common condition. We all know several people who have survived the diagnosis. We can be fooled by the “pink washing” of breast cancer into thinking it’s sorted. And so much really has improved. Even being diagnosed with secondary breast cancer does not mean the end, treatments that manage the condition can mean many years to experience birthdays, weddings, new births and all the ups and downs life offers. But counting the years and months isn’t the same as understanding the day to day life experience for people. Everyone will be different but it will be rare to be free from physical or emotional sequelae of treatments past or often ongoing. Everyone’s story is unique and needs to be acknowledged not hidden or diminished.  

April 18 is the next step in my own crazy cancer experience. I’m attending the clinic to hear about whether I need any additional treatment. It transpires it’s Easter Monday…..so that is optimistic, isn’t it? 

Wabbit and crabbit…

 

Recently our grandson had to come home from nursery early. He’d had vaccinations and h temperature was up. He announced as he walked back in the door….”I’m ok, I’m just a wee bit wabbit.” My heart melted with this announcement. Partly because wabbit spoke to how I feel too -the perfect word. As well as delight at his use of the Scot’s word. It was the reminder too of how Scots permeates our day to day language and how uplifting ( and very cute) it was to hear him use it. We’re a land of many languages- reflecting the many influences on our island nation. He may even learn Gaelic in the future, it’s a language taught in his future school, something I could never even have contemplated for my children or for me as a child. 

In a time when we are seeing a sovereign nation ( Ukraine) being violently invaded by Russia, ripping out it’s very core , its made me grieve deeply for the people and it’s touched that Scots part of me that feels an affinity to a country that was finding its feet as a culture again and scared by how fragile that now seems. 

I wonder if it’s true for nations, as it is for people, that we can never truly love others until we love ourselves. The Scotland I grew up in was not one that loved itself or it’s heritage, frankly we didn’t know much about it. At school we learned nothing of our history, our literature, our music and were criticised and even punished for not speaking English. That’s hard to believe now as so much of our culture is re-emerging and the “Scottish Cringe” is becoming less evident. A friend brought my attention to a Proclaimers song called Scotland’s Story. https://youtu.be/hcZF42F_o00. It really moved me, as an island nation we are a wonderful mixture of not only the countries of the UK but from across Europe and beyond. The song lists the many folk who make up our land, including Ukraine. “We’re all Scotland story and we’re all just the same” such a powerful message to all who want to call this place home. 

As a family we have applied to house refugees ( I know…..are we crazy, we’ve so many challenges with our health but we need to help and we’ve a warm homes and big hearts). I welcome that the Scottish government have an arrangement as super sponsors working with the UK government scheme https://www.gov.uk/register-interest-homes-ukraine. “Our hearts were already open – now our doors are too,” Nicola Sturgeon said. https://www.gov.scot/news/scheme-opens-for-displaced-ukrainians/ This includes information for Ukrainians who want to come to Scotland for refuge and how they can now choose that option. I do hope so many are able to be helped. Not just the Scots but the British peoples hearts are much more open than the governments processes are I’m deeply sorry to say so we all must do what we can to have our voices heard and get visas waived for now. 

And in other news, I’ve more surgery to face next week. A biopsy has shown a  small but cancerous tumour in my breast. It showed on CT which was reported after my first operation. It’s another triple negative tumour but different to the earlier one. Prof Dixon has never known this before. I have no words! My brain keeps trying to make sense but fails. And with other health things in the mix I’m feeling overwhelmed and my body battered adjusting to the medication for, recently diagnosed, inflammatory arthritis- likely rheumatoid. So my outward appearance maybe reasonably calm but it’s a swan like performance. And there is a bit of me that feels like a Munch painting. 

You know the one! But the intramuscular steroid injection has helped a little with generalised pain and mobility which is so very welcome…I’m taking that as a win! 

And the sun is out this weekend and I plan to get out and about whilst isolating before my operation. Covid is everywhere here, how on earth can I avoid it and remain sane at least until my surgery on Thursday? 

Wish me luck….

Talking gratitude, storms and shhhh!

Do you know this saying? It says - “life isn’t about waiting for the storms to pass, it’s about learning to dance in the rain”. Now I admit to liking the odd quote that can tell a truth in verse or image that opens up a new way of thinking. And in this week, post op, the storms have been raging in this part of the world, both real and metaphorical. So it strikes me that not only have some of these actual storms come with a red warning, I’ve also been reminded that dancing is not my strength either. I’m glad no one reminded me of this quote or my reply might have been brief and to the point ( you know, two words, second one….). 

Ten days post op and I’m healing and some pain receding. At times I’ve been able to marvel at the body’s ability to recover and at other times I’m reminded that our bodies are complex ecosystems and one wrong move and the repercussions are widespread. This weeks smorgasbord of symptoms has included severe nerve pain, bladder infection and the old favourite, constipation. 

Some days I think constipation is the worst thing to cope with. I’ve been toying with the idea of setting up a podcast called “Talking shite”.

In Scotland ( and Ireland too I believe)  it’s a riposte to people we think are talking nonsense, occasionally fond but mostly not! And the word shite is an adjective as well as a verb. Now I don’t suggest you try this out in polite society ( !?) or say-at a job interview but in the right context it can be liberating if rude! And some light hearted banter and information about constipation is so needed. It’s the thing no one wants to talk about and yet can make you quite ill, for some it causes acute illness and should never be ignored. So if you live with chronic pain and need to counteract the effects of opioids on the bowel join me in being open about talking shite and don’t be afraid to ask for help! You aren’t alone…

Meanwhile in other storm news, I’ve to have another scan and likely biopsy on something the CT showed. I’m unsure of details but will find out more this week ahead. I’m taking a step at a time and should get all results early March. And the weather based storms have made it pretty hard to dance or even stand up straight so instead I’m reading, doing a little writing and contemplating trying cross stitch. I suspect the afore mentioned adjective may be employed during that process of learning and experiment but I will try to retain my beginners mind of curiosity, not judgement.

In many ways it’s gratitude I feel this week, in spite of the storms, for the kindness and love of family and friends and the many ways they have reached out. It’s hard to express how much it helps, it really does. 

I feel less alone in this storm and that’s getting me and Andrew through. 

With love and thanks to you all. 

Audrey