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Breast cancer is a thief…

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  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
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The Struggle Bus

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                                                              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
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Who dreamed of being a princess?

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

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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
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Unexpected grief.

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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.
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For the carers

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  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
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Summer days, drifting away

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  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
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