Wednesday 13 March 2024

Scanxiety?

 



It’s not peculiar to cancer but waiting for results can be the worst time of all. Last week I had really quite bad scanxiety. Yes it’s so bad it’s got its very own word. I had a follow up scan after a few months on olaparib at a lower dose. The truth is I’d been tolerating the drug fairly well apart from anaemia. So I’d had a transfusion after feeling the effects of anaemia; from breathless, swollen ankles and being a sleepysaurus. It helped me and life has been a bit better. BUT was it stopping the cancer ? That was the question and so I approached the scan with some trepidation. 

The scan itself was simple but it’s the wait for result that starts to have an affect. The day before I was due to the clinic for the result the Secretary of the consultant called to ask if I could come at 1 pm rather than 12.10. It would save me waiting I was told. And that set the anxieties off. I imagined all sorts of reasons that on reflection seem so tenuous. But essentially I was being delayed because it was bad news. I was finally seen at 1.35. And by then I was truly scared. The door to the consultants office opened-How are you? he asked and I mentioned a couple of things then said but I’m really scared about this scan result and waited. 

Well it’s good, shows that the cancer is under control. I slowly breathed out. Not shrunk but stayed under control. I will take that I say. So a few more remarks and I was out the door, planning the summer and not looking back. 

Keep taking the tablets, look out for signs of anaemia and ask for a transfusion. I can do that. We then went away for a few days with good friends and enjoyed every moment. Happy days. We’ve even booked another trip together- life is good. 

But tomorrow I have an MRI to look for any issues with my pituitary which might have contributed to the adrenal insufficiency that has resulted in a very low cortisol. It should be fine. But when the machine plays its discordant symphony I defy the stress levels not to be affected. And then it’s waiting for the result. But I’m sure it will be fine…….won’t it? 


Sunday 3 March 2024

Number one on the fuckit list is….?




 I’ve never been drawn to writing a bucket list. What I’m able to do changes regularly and it would lead to list of cant do’s and a loss of gratitude for what I can do. However I did hear once about a fuckit list. Now that’s worth exploring. 

So I’m thinking of compiling - over time- a list of things that are shoulds which one way or another will burden me at this stage in my life ( or let’s be honest at any stage in my life so far) and I am therefore seeking to ditch, perhaps with a suitable ceremony? 

So far and so at the top of my list is ‘lose weight’. Honestly it’s so ingrained that I still fret about my shape and any extra weight I carry. And that has been the case since I was in my early 40s. It’s such a female thing and although I’ve tackled some major issues in my life, I’ve still held the belief that my value to the world is fundamentally attached to what I weigh. And I’ve always been a wee bit heavier than I’d want to be or that the BMI charts think I should be and so to follow that line of thought, of less value to the world. 

Now even I can see that is clearly distorted thinking and yet I still catch myself judging myself harshly. So if I notice that line of thought I stop and try to see something to approve of instead. And the best thing is, it works and I feel better! So number one on the fuckit list is ‘I only count if I’m thin’………

……."fuck that! and go to the top of the list.

Sunday 25 February 2024

Future times?




 I find myself constantly changing timescales in my head. I never commit them to paper or even say them out loud. It means my level of comfort with planning varies. A passing comment like ‘let’s do this every year’ makes me hesitate before I reply. Yes definitely, my reply. And that hesitation expresses my doubt in my future. But strangely sits alongside the part of me that assumes a full future. That’s the part of me that keeps moving forward. 

It’s hope that creates the momentum to keep going.

In the past I’ve watched friends and family approach each stage in their cancer journey with determination. And I’ve often thought how can they keep going? Even at times, why aren’t they giving up in the face of such an awful impact on their wellbeing? I’ve wondered if I could keep going in their situation. I’ve doubted my courage to continue. 

But now if I step back and reflect on my situation I realise I am that person now. The person people look at and think, how does she keep going. I’ve assumed in the past that it’s grim determination that would be needed to get up each day. It would be like the final push of a marathon or a mountain climbed without the rush of the achievement. 


But for me at least, it’s not that. It’s the lure of life, of a daily simple routine, to stroke the cat and hear his purr, to laugh together on the antics of the latest video of our grandson, the spring flowers edging up. And time with family and friends is so very precious. Again it’s not the big things, it’s simple kindnesses, it’s time together, it’s hugs and hands held, it’s a shared acknowledgment of the precious experiences, it’s the quiet presence of love without words needed to prove its existence. 

You see it doesn’t feel like a slog at all, it’s the precious privilege of life, enjoyed each day at a time. What a gift. 

Monday 12 February 2024

Some good times

 






I’ve had an amazing week and I’m still lifted by the different experiences. I’ve been talking about my book, The Journey to Better Times,a quote from a doctor I worked with, when I went back to work overwhelmed by loss and grief. He quietly took in my demeanour and said softly, there will be better times. 

He was so right and this last week has been among the many times to savour since my first diagnosis of breast cancer. At first it was my birthday and whilst I’m  a bit old for balloons and blowing out candles on a cake, my wonderful family treated me to a super few days. And the best birthday cake candle ever! My sister and brother in law even managed a visit, which felt really special. I have a wonderful array of flowers and tasty gluten free treats that arrived unexpectedly and I felt/feel really loved. To all of you who made it so special I say a huge thank you, I’m treasuring it all. 

And just as the adrenaline was settling and the treats finishing, the day approached of my book launch in Glasgow at the ALLIANCE, the charity I co-founded and chaired for the first 10 years. It was really relevant to launch the book there, as my thinking shaped and was shaped by the work in the ALLIANCE and the people I worked with were inspiring and encouraging. It was a very busy time but also very creative and challenging in a good way! 

I was nervous in advance and wondering how to ensure I enjoyed the day. My pain levels had been high, especially in my left hip. In fact I left the house calling out in pain as I tried to walk to the door. Thankfully a change in position relieved the extreme pain and I felt confident I could last the afternoon. My husband and daughter joined me which warmed and grounded me. The audience was a wonderful mix well known faces and people new to me and my work. ( You can buy on https://www.ebay.co.uk/itm/394965421080# or Kindle https://www.amazon.co.uk/Journey-Better-Times-long-term-conditions-ebook/dp/B0CM82XJTS


And so I introduced the book I had written over the course of the pandemic. I introduced the concept and the 10 elements one by one. I weaved this with stories that shaped me and my thinking. It was great to hear the feedback that they resonated with others. And that they gained from working through them, while some seemed more important to them than others. They recognised this is deep work for those willing to go there. If my health was different I would love to offer development work for one to one or groups but the time is not right just now. I’m curious whether that time could still come? 

At the end I read out my poem. The lump in my throat took some time to go.Thanks to all of you for coming, for buying and reading the book. Please spread the word and encourage others to buy it. If you want an event I’d love to plan that with you. This week has reminded my of the better times and whilst I know mine are limited, they are still possible. And I love to share them with people I care about. A huge thank you to all of you who have made it so special. 





Monday 8 January 2024

Wishing you guid health and happiness from mine to yours.

 



It wasn’t Happy New Year I heard, it was “We need to admit you today for intravenous antibiotics”. The day was December 31 2023. The previous few days, since Christmas, for me, had been a series of tests, surprising new diagnoses like very low cortisol and then this. I had a bacteria in my blood that needed treated imminently with a broad spectrum IV antibiotic. The next few days identified the bug as rare and it took several days to find a suitable oral antibiotic ( and from there the journey home). I was isolated in a single ward due to RSV and the bleakness of the room itself led to me agitating each day to get home asap. It was Thursday evening when I got home. Christmas gifts abandoned, the decorations and cards adorning the house all reached out welcome arms and I sighed back into MY chair tearfully ready for home. 

I know I’m able to get home but I’m very aware of the fragility of my health and situation now. Perhaps I’ve felt especially unwell without fully being aware of that in my quest for escape. Since my return home I find myself thinking of how it must feel to be trapped in hospital, unable to move on to a new home or to get home. The so-called bed blockers, depersonalised and powerless, who advocates for them? They are referred to with frustration as in the wrong place, using up NHS beds etc but rarely do we see it through their eyes. The loss of the familiar, loss of power, loss of a voice in the system, loss of their home, loss of living with family or pets….the list is endless and I find it almost overwhelming to explore. I suppose it’s too close to home. For the first time I felt less control over my situation and didn’t like it. 

But I am home and even managed a short trip to the Botanics gardens, savouring the fresh air and companionship of friends. My head is shifting from an internal focus back to the external like focusing on raising awareness of my book. The shift feels good and I’m more in touch with people and perspectives beyond myself. 

One podcast by the Newsagents very usefully explored the situation in Ukraine as we start 2024 and it was a very powerful reminder of the ongoing situation now. We know this from our Ukrainian friends too and I was moved to write this poem. 


For Ukraine


Each year calls us

to honour its passing, a kiss

a hug with love 

to whisper it’s gone.


But for you ,yes the year

has gone.

But not the cruelty of bombardment

of homes shaken every night.


Of nights hidden in bathrooms

cold with fear-and chilled hidden underground 

and the ennui due to a life 

on hold, blind to future hopes.


Here, we switch off the news.

Your lives in Ukraine diminished for now,

by Gaza’s devastation.

Are you tired we ask?


Our fickleness wants to project

a more palatable scene.

But your reality is of pain, 

of loss, of terror night after night.


Scattered you face lives, stateless, 

And ambivalent futures.

At home fear is a drone, a letter or the hand on the shoulder-

the call to fight.


But that’s NOT all-

you see the love

of communities, of neighbours

of families where ever you have landed. 


Because love is not rationed.

Hearts swell with empathy

and compassion and so

we stand  with Ukraine

Slava Ukrani! 




Sunday 24 December 2023

A peaceful, heartful Christmas for you all.






I imagine it’s not surprising that it’s hard to write in the run up to Christmas, especially with a recent diagnosis of stage 4 cancer. More than last year I’ve definitely felt the need to explore the “what if it’s my last Christmas”? It’s like using the tongue to probe the source of the toothache. Braced for pain but surprisingly numb.  But this week the numbness has worn down. I’ve become messily tearful.  

Our dog Cara died this year and I’m remembering her loss in April. I miss her gentle soul. I’m not sure the cat does however as he never goes near her bed any more. Instead he plays ‘try to get to MY chair first’. Everyday he spent the morning in her bed and generally by the afternoon Cara had reclaimed it. Two days after she died Koshka no longer wanted the bed. I’ve tried to analyse it …..but I’ve no idea really.

I’m writing now on Christmas Eve, family gathering, cooking, baking, wrapping and reflecting. What if it is my last one? I no longer feel afraid of that…nor do I feel a need for it all to be perfect. 

I just want it to be peaceful. Peaceful for all we care for and about. Peaceful for our Ukrainian family however unlikely that seems now. And peace so needed in Gaza and Israel. Our friend Gerry has worked voluntarily for 20 years or more helping oncology nurses in Gaza develop their practice. The last few weeks have been full of bad news about the nurses and their families. A world of loss and heartbreak that defies description. 

That’s why on this Christmas Eve I give thanks for all the people I know and love and hope this year brings me more time with them. And for all of them life is fulfilling and full of good health and love. After all a more peaceful world starts with all of us. Have a heartfelt Christmas. 

With love

Audrey

















Wednesday 29 November 2023

Ticking clocks and who cares.

 

A early sight of the Botanic garden lights 

Well it’s been a week or so of two half’s. We had a wonderful weekend with friends in Fife again.We enjoyed good food and even better company. The discussions ranged from climate change to life’s transitions like future weddings, fun toddlers and hospice support. All of life’s shades and colours helping really honest conversation.  The new date is already booked time to come together in early spring. Ever the optimists. When we arrived home we discussed how valuable the weekend had been for us both. It’s so valuable to be able to go to the sad and difficult places but also to have fun and laughter. 

Then the following evening brought a change to my condition. I noticed a pain in my right side and linked breathlessness. The following day they explored this further and eventually got my earlier scan result. The pain was explained by the cancer having spread in my liver and diaphragm, hence the pain. The new chemo was not working enough and so a new plan means going back on olaparib which worked well before and hopefully will again. I hope to start it soon and increase the monitoring and treatment of anaemia the main problem it caused me last time. All fingers are crossed and we all got the kind of shock that is very recognisable to  those of us who live with stage four cancers. My tendency to prefer a little denial is tested when a different reality is enforced! A reminder that we’re not talking years ( a year has already passed I realise) and right now that’s all we know.

As many of you know ( and readers of my book) I worked 

to set up the charity breakthrough breast cancer in Scotland as the first director. It is now one of those wisely merged to become breast cancer now, who contributed to the research that developed targeted treatments for women with BRCA gene and triple negative cancer. That was emerging when I was working with the charity around ten years ago. These drugs were the new hope and not just for breast cancer but notably ovarian cancer too. 

And here I am,benefitting from the work we had all supported in our many roles. It feels so powerful to be honest and I remain grateful to everyone from the scientists, researchers, fundraisers and influencers all of who ensured it got beyond the lab to help us day to day to live our lives, make memories and enjoy another Christmas with families. When the seeming small things become the big things. 

This weekend offers a time to come together with wider family too and to me it’s precious. But Andrew has developed an acutely painful back. It’s not serious but painful and we’re on the struggle bus until it settles. It’s a perfect illustration of the life of the carer who feels they can’t be ill and that they are letting their loved one down when the one they care for feels guilty for the trap their situation creates. I’ve become his advocate and thankfully I can still do that and now he has the right treatment and can draw on more resources. Too often carers just get empty words of sympathy, never helpful, and not much else. 

So often the hugely important role of carers both formal and informal is neglected. My carers from the agency are all from overseas, the immigrants so reviled by the politicians. The terms and conditions are poor, meaning that the many  hours spent on a bus to go between clients is unpaid. This is both an urban and rural issue. The few paid hours really affects income but not the tiredness of constantly being with or between clients. Deregulation of the care system has led to this, so the new national care service needs to address this issue as well. It has to be a service with compassion at its heart for all and person-centred for clients and carers alike or it will never be  sustainable. If only our politicians would address the real issues instead of gaslighting the public with blame the immigrant. My immigrant carers are special and precious. They enrich our lives and I learn from them, they make my life possible.  I want to live in a culture that welcomes them, not blame them. 


And it’s coming up to Christmas so buy my book ?on line in Amazon.UK and through eBay and tell me about your thoughts. Thanks!  

https://www.google.co.uk/search?q=audrey+birt+ebay+Journey+to+Better+Times&ie=UTF-8&oe=UTF-8&hl=en-gb&client=safari&safe=active 


Scanxiety?

  It’s not peculiar to cancer but waiting for results can be the worst time of all. Last week I had really quite bad scanxiety. Yes it’s so ...