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 

A meeting of worlds

 

A meeting of worlds

The last few weeks for me have been quite exciting in some ways, testing of my energies and health and an opening of support and care. 

But the backdrop to this as we know has been a very turbulent time in the world. I’ve tried to engage with this, with friends deeply grieving for their friends and donating to support. Not just in Israel and Gaza but also Ukraine whose people face and uncertain time with winter approaching.

I’m aware of them all and trying to do our best. I try to do what I can but also step back and use my energy wisely and not lose the balance of self care. One of these days I will get that right! 

The source of my excitement was taking delivery of my book, The Journey to Better Times. I’ve written it over the last few years with the ups and downs of energy and health challenges. During this time for example I’ve been diagnosed with secondary breast cancer, the cancer now spread and moved into my liver. I’ve recently started a third chemotherapy, oral thankfully and so far its impact hasn’t been too devastating. 

So I’m gradually drawing attention to the book and encouraging people to buy it. I write as someone who has several longterm conditions and combining that with my professional experience. It’s gradually emerged following lots of discussion and many good people have helped me.

I know it’s moved people to tears and to valuable reflection. Dr David Reilly has said “she adds wisdom gained from her nursing, her coaching, and her experience as a senior executive in health organisations.  She is a woman of heart, wisdom and deep life experience, and this book allows you to gain from her guidance and from her inspirational life.” 

And from a friend who worked at a senior level in mental health social work-

“ I think you’ve struck a really good balance between being heart rendingly honest about your own experiences and processes and your more professional and analytical side from your nursing, 3rd sector and leadership experiences. I think this will be a very important book for people with long term conditions, their supporters and loved ones but also for the whole range of health and social care workers who they come into contact with.“

I’m so grateful and encouraged by their reflections and compassion. 

You can get the printed copy from eBay https://www.ebay.co.uk/itm/394965421080

You can find the ebook on Amazon kindle on the same name Journey to Better Times. 

I would love to be able to gift these but I’m afraid the cost to publish them has been too high. Please tell your friends and colleagues about it and I’d love to hear from you and your reflections on the book. 

 Please buy it and share on social media and your friends if you can. I’d love to have made it free but I’m afraid I need to recoup some of the costs to get it to hear. But. What is even more valuable if you give me your honest feedback too.

The other development recently as I’ve been referred to the hospice, as someone who now has a life limiting illness. I’m not at end stage and may not be for sometime but it’s a new stage and it’s been so valuable to have their support. I feel I’ve been scooped up by a group of skilled and caring people and I’m so relieved to know they are there. 

This week they had a pop up Christmas shop….I know it’s a bit early but it was a way to support the range of work they do. I bought a cookery book, a strange choice for someone whom lives with nausea and indigestion! But I must have known it would take me right back to childhood. Each Tuesday evening we went my Auntie Jessie for tea and my favourite meal was corned beef stovies. My thanks go to Val McDermott a fellow Fifer who shared this recipe. I’ve already put in my request and Andrew has promised to give it a go. Happy days. 

Keep in touch!