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!