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

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! 

Is it Autumn now?

 It’s been a time of tense appointments, antibiotics and wandering cats. It’s supposed to be autumn but the trees are holding onto their green leaves and enticing us with thoughts of sunny days. But the nights are changing and our solar lights  spring in to life earlier and earlier. The bees ( thats the lights)cheer up our patio aimed at warming the winter nights,  a contrast to the darkening skies. 

A series of urine infections have me wearing out the carpet trotting back and forth to the toilet, cursing the side effects and the relentlessness of it. Honestly I haven’t been feeling great, weary and going from one health issue to the next. As we approached the oncology appointment and to get the result of my latest scan I was nervous and saw the same in Andrew’s expression. So we had the usual rage at the car parking and rushed to get there on time and then waited for 90 minutes to be seen. The music ( smooth radio) was playing a bit too loudly, with every cheesy song known to man. Eventually Andrew embraced it and was singing along quietly and making me laugh. It’s laughter that sustains us always. But in time the oncologist confirmed that all my symptoms were not due to infection but due to the liver disease advancing again. Although I knew I felt tears close to spilling down my cheeks. Our hearts sank but we knew it was coming. Back on another oral chemo, back in a three week cycle of a kind of cancer umbilical chord trapping you to the cancer ward. It’s world that is both familiar and frightening. Our summer was definitely over.

I visited our modern art gallery recently and parked under the neon sign that said “everything is going to be alright” and decided that it’s an omen and Andrew captured the image. 

Recently Koshka the cat has been behaving strangely. Autumn generally means him snoring the afternoon away but recently he’s been out much more. So it’s been hard to know where he is. A few nights ago  I headed to bed saying is the cat in? Andrew’s reply was hesitant so I called for him all around the outside and in the hall. Nothing. Andrew did that some more looking under beds as well as in the gardens. Nothing. We both slept for a while then I heard a noise so went out to look again. The rain was pouring down. Still. Nothing. Andrew went outside aware of the risk of being caught wandering at night in his PJs!! My mind was racing and then- yes you guessed the cat skipped down the stairs looking for dinner -“he’s here!” I said cautiously, uncertain of the reply of the nighttime wanderer. I won’t repeat what was said. But then we slept soundly till morning. 

We were retelling the tale to our son, able to laugh now. Andrew said I think maybe the cat has dementia. He said are you sure it’s that, he’s just come out of the drinks cupboard…What a week it’s been and I’m on yet another antibiotic and waiting for the appointment to start chemo. Life feels tough. But I’m at the final stage before printing my book! It’s my light in the gloom and helping me look forward. Here’s how it’s going to look, by way of a teaser. More on this soon.

Using your bounces wisely!

 Autumn awaits

I found I hadn’t the drive to write this blog last month. We’ve had precious time with family and fitted in some well paced fringe shows as well as the final concert of the Edinburgh International Festival which was an inspiring conclusion to August in Edinburgh. 

I’ve crashed and burned too at times. The worst being a flare up of rheumatoid arthritis. Grim. Additional treatment, pacing and a referral back the rheumatology has helped. But it’s left me rather shaken. And now I have another urine infection. I’m accepting that with so many conditions, this is my life. But I’m here and doing my best to get the balance between emotional and physical well-being. I do need connection with the outside world but that needs to be well managed. And given all that I managed a trip to North Berwick, ate prawns at the lobster shack and tried out my first beach wheelchair! I loved it and wished we still had Cara to run alongside and be reminded that life is good. ( Phia-next visit this is a definite!!)

This weekend we celebrated our grandson’s birthday. Hats off to his Mum and Dad who coped with the mayhem of five year olds, bouncy castles and face painting. And supported the building of more Lego in one day than I thought possible. Throw in dinosaurs and baby Yoda and you can picture the scene. The day after the party delivered the best line of the weekend. When I asked my grandson if he had any bouncing left for the trampoline in the park after the bouncy castle the day before, he replied, “I never run out of bounces, Grannie”.  Any one who has ever learned about pacing probably knows about using up your spoons but for me that’s now my bounces! How many bounces do you have? My bounces have left the building to be honest but the question will always make me smile.  

My book is close to printing now and that’s incredibly exciting and has evoked a serious case of imposter syndrome. And the more I look at it the less typos I can see. But I am really pleased with how it looks. The next stage feels a big one but I can’t stop now. Any wise words welcome!! 

Hopefully October will bring a launch date. 

Lazy and hazy Scottish summer.

 

It’s a sure sign I’ve been feeling more energised that I’ve finally managed to do the edits on my book. What book? I probably mentioned it about four years ago and various illnesses, treatments, pandemics got in the way. But now it’s nearly there and I’m now at the final stages with it. It’s not unlike my blog in that it’s about my lived experience of living with cancer and long term-conditions as well as using my professional knowledge of how to live well with all that life throws at you. It’s not about external things, it’s more about knowing yourself more. In even its rawer stages I’ve had feedback that those who’ve had a preview found it was very valuable for them and frankly that’s my motivation. So watch this space! 

But this week I’m on the third lot of antibiotics for a bladder infection and to say I’m weary is a huge understatement. And I’ve remembered how that feels. It’s scared me a little, I thought I was on it but clearly not. Pace yourself is my mantra this week but I did get to see my daughters choir in action. 

The Phoenix choir has three choirs in Edinburgh, one of which was the carers choir. There was something so deeply moving and uplifting seeing some of these older women and men bringing that voice deep from their soul and going for it. The joy that singing and music brings was in that room for the singers of all ages. And it was a special treat seeing our daughter head back and feeling the joy. 

These are the moments I store away.

Our wee -well pretty big-cat has had a tough week- he had eight teeth out. Now there’s trauma but he’s dealing with it in style. They have given us a leaflet on how to brush his teeth. He’s 14 this month…..I won’t be brushing his teeth anytime soon. I value my skin! The visit to the vet was also where Cara our dog was put to sleep. That was so tough and made her loss feel like yesterday. We were so glad Koshka only had some toothache. As I write he’s asleep in my wheelchair. Attention seeking or what?! 

And my final word is I feel such concern for the awful heatwaves around the world. But it’s very different here in Scotland where my plea is can the sun come back, a watery 22 centigrade would do. Our rivers are full again so please can we have a bit of warmth-it is July after all. 

Happy days of summer-wishing you some too.

 

                                          Ben Nevis and the glory of the mountains surrounding. 

It’s that time again for scans and results that will provide the shape of my summer. The CT scan is quick and painless and a much easier experience than the MRI. My experience of MRIs have been mixed but are always accompanied by the cacophony of noises and the pain for me of lying still for sometimes around an hour. It’s a grim form of torture dressed up as being an important investigation so any thing less than that is a relief. 

But the real trauma is waiting for the result. Knowing that these results define the next stage of the year or in this instance, the summer. So it was with some anxiety I sat in the waiting room. Generally Andrew and I have the ‘what are you expecting’ discussion. Trying our best to be honest with ourselves and each other. 

This week I really didn’t know how it would go. And the news was good. The liver cancer is stabilised and my haemoglobin which had been as low as 75 at one point is now up to 130!  I am winning at the numbers now! And so I’ve time off active treatment this next two months. 

I nearly shot out the door straight away as if the Professor might change his mind if I hung around. But I stayed and got good advice to come back earlier if I feel less well. So hopefully a warm summer awaits with some fun concerts and trips in Scotland too and for now I’m free of medication that makes me queasy.

Any one who has had these cancer drugs know their impact tends to linger. Like a bad friend who just won’t take the hint to leave you alone.

Now I’m a Celt, I get freckles and burn if I’m too long in the sun I burn. I’ve learned how to build up a healthy glow without getting burnt. But not now. My skin last week felt like I had been burned. A chemo legacy. So sun screen and the endless search for the sun hat that doesn’t make me feel like I’m Worzil Gummich’s strange Aunty!

We’ve now had an exceptional few days in the southern Highlands with friends and family. It truly reminded us how good life can be. Our daughter and granddaughter both achieved climbing Ben Nevis this summer too.  I’m in awe of this achievement. And see the remarkable capture of the Ben on a rare day without cloud. Roll on a happy summer days for you all and especially a shout out for those like me who are able to enjoy it without the slog of cancer treatment.

See below we visited Loch Tay just the place for a wild swim I hear! #visitscotland 

Who’s boss….not me!

I told myself off today for wearing black so I put on a white T-shirt instead. A mistake! I’ve a head cold and I’m a wee bit wabbit as my grandson would say. 

I looked in the mirror, ‘Oh my god I’m an old woman’. Yes this year has taken its toll but the recent virus has not helped me have a healthy glow. So I’ve popped on some makeup including blusher and lipstick. I’ve no visitors today but I wanted to banish that old lady in the mirror. I daren’t look.

In truth I’m off the oral chemo just now as it’s been good at reducing the tumour ( 😊) but also good at suppressing my bone marrow and making me really anaemic (😟). And I’m due a scan in a few weeks to see how things are. Meantime I’ve been making the most of having more energy. I’ve even managed some out out for dinner and to see Six the musical 🎶,it’s fantastic, do see it if you can. 

https://youtu.be/iJW71rMVQyE

The dog/cat bed remained in pole position until this week. Although Koshka used it the first week or so after our lovely girl died he shunned it. Prior to her death he was in it every day at some point. He is an enigma as many cats are. But there is no doubt who’s boss…..it’s definitely not me. 

Small things can become big things in my situation I find and my latest trauma I’m embarrassed to admit about. My favourite chair ( it’s a rocking chair that you can make into a lie back as far as is comfortable) was away being reupholstered. I opted to have it fabric rather than leather. In the meantime I have been Goldilocks trying every chair and finding it lacking. The sofa also has recliners so I thought I would be fine but the truth is it eats me. As I lie back it fights back and holds me trapped in pain. And then I’m stuck and need help to get up. It’s not elegant and that old woman threatens to take my confidence. I finally emailed the reupholsterer and described my plight. So THE chair has returned in a resplendent Heather colour, I may never get out of it! However Koshka loves a warm chair and shuns the leather one. I fear I may find myself in an ongoing ownership battle. I know, I know I’m bigger than him but he does a very very good psychological campaign as well AND he is being rather spoiled since Cara died. 

Here’s hoping he feels some sympathy for me and at least is willing to share? 

Wish me luck 😉.

The Quiet House

Our house is so quiet.

So quiet that the cat’s footsteps 

whispering through the house

speak of his soft presence.

At last the dogs bed is his

without the dance of enforced sharing.

there are beds in almost every room 

even two in the cosy sitting room.

But top choice was the comfy dog bed.

Now visitors see the dogs bed 

in pride of place,

it’s presence dominant.

Quickly I try to reassure that

we aren’t in denial

or pretending the cat is Cara,

slipping the collar around him

and trotting of to the park.

No we’re just unwilling to move the bed

that he so obviously loves it.

And his soft delicate snores

break the silence.

We gain such comfort

as he quietly takes over.

We thought that food was safe from

the long legged thief

whose stealth has gained her 

everything from fillet steak 

to roast salmon and expensive mature cheddar.

Unimpaired by remorse.

But the day after she died

a sausage was stolen

her spirit tempted by an 

unclaimed sausage perhaps?

But the the cat appeared 

licking his lips

heading for THE bed

and an unrepentant snooze.

Soothing the sadness 

with his beautiful presence. 

Cara means friend.

 Cara

Cara means friend 

and you were the best friend

to us.

Your adoptive family whose lives you changed.

Your runs were the like the wind.

You swam like an otter.

That nose could empty pockets 

and deliver kisses to all who wanted one

and some to those who didn’t.

You loved us, you loved the children,you loved the oldies

you even loved the cat. 

You were the gift who

found us friends and took us to special places.

Thank you for everything.

We miss you. Who now will share my cheese?

Sleep well our princess.

Our gentle girl with the beautiful soul.