Audrey’s Blog on living well with disability and breast cancer

  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 larg

  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 an

                                                              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

  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 th

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

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.

  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 t

  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 fa

  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 da

  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.

  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 w

                                                                     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 m

  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

  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

  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 a

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, co