Wednesday 19 June 2024

Are your days special?




It’s been a quiet writing time. But for good reasons in the main. Last weekend we had a special time with friends. We weren’t far from home but it felt special with the sea close by, beautiful food and wonderful company. The day we came away I got my last scan results and they were really encouraging. The cancer in the liver was slightly reduced so the cancer is being controlled even with the reduced dose of olaparib. I feel so very fortunate. Instead of the potential to count my future in months that’s now opened up. No guarantees of course but hope opens up some possibilities. So at least summer comes with some optimism and I’m so grateful for that. 

I’ve had some opportunities to talk about my book and next month I’m doing a compassion salon. Compassion salon It’s a great concept when people explore compassion in the context of their work and life. My link is my life and the book. Element 10 is self compassion. But it’s a theme that traverses the whole of the main message of the book. Compassion is the backbone that builds the core of the ten elements. 

Promoting the book has helped boost my wellbeing because although I have stage 4 cancer and my future is uncertain, it reinforces that I still have a contribution to make and that makes this special time in my life and even more precious. I start my book saying my wish is when people read the book that they find hope and purpose from it. 

It’s certainly given me that…..thanks to all of you who have enabled me. 

I was so moved recently by the last message from Rob Burrows the rugby player who  died from MND. His spirit shines and his compassion for himself and all of us is evident from the twinkle in his eye and the wisdom of the message itself. Do have a look and as Rob says make each day special because from where I’m sitting, they truly are. Rob Burrows

Saturday 25 May 2024

Finding Hope and Purpose.

 



I’m hesitant to say the words but in the main I’ve had a settled time with my health. I’ve a million smaller complaints and I have tried to thole them. Just build them into my normal and accept that someone in my position will have many symptoms and that chasing all of them is the way madness lies. 

When Beverage planned the NHS he thought that if everyone had access to free healthcare at the point of need then the need for the NHS would decline. But instead he discovered the onion principle. That as you peel off one layer of illness the another emerges.

And that’s what I’m like, I get on top of managing one problem and symptoms from something else emerge. I’m almost embarrassed to talk about the long list that affects me. 

The truth is distraction helps at least initially. But the trouble is……..at night it’s so different. I’m less sheltered from my daily reality. And I’ve noticed that time seems to pause or stretch each minute. Sometimes I awaken around 11 having slept for just over an hour and fear encompasses me. Is this my night ahead? Checking the time and groaning in pain whenever I change position. My back has been so troublesome that at my last hospice appointment I asked for a massage from the therapist. What a good move that was and frankly it’s not been as bad since then. It’s always a plus to find a non drug solution.

I’ve also had the chance to talk about my book with a group of health and social care professionals. It’s such a buzz to hear what the book stimulates in others. I’m booked to speak to a book festival in the summer and a local compassion salon. It’s exactly what I hoped would emerge. I miss working, especially coaching and developing policy from those with lived experience so any chance still to do that is just wonderful. Here’s a link to the book to buy . https://www.ebay.co.uk/itm/394965421080 It’s also available on kindle https://www.amazon.co.uk/Journey-Better-Times-long-term-conditions-ebook/dp/B0CM82XJTS?dplnkId=9bd2d467-50e2-48a6-8431-414798dceaaa&nodl=1


And the final treat for me was the hospice newsletter covering my story and putting my photo on the front page! Thanks so much to that team for totally understanding what I’m trying to say in my book and giving me a platform for it. 

Because they know that although I have stage 4 cancer and my future is uncertain, I still have a contribution to make and that makes this special time in my life even more precious. I start my book saying I wish that people will read the book and find hope and purpose from it. 

It’s certainly given me that…..thanks to all of you who have enabled that. 

Thursday 25 April 2024

Is this the terminus?



In the recent  interview with the BBC they referred to me as terminal. That word triggered lots of people I know to be in contact me. It’s not a word I use. I’m not even sure it’s accurate. The world of secondary breast cancer is now a journey into the unknown. So far the only drug that’s worked for me is olaparib and it’s only available off license to me. No one knows how long it will work and right now I’m working on the basis I’m doing ok and hoping it will stay like this for a very long time. I set some dates in my head….if I can get to…..but don’t say them out loud for fear of tempting fate to have a different plan. I’m taking  wise advice on building up my nutrition and well being. And generally taking time to smell the roses……..or more accurately watch the blossom. It’s joyful catching the avenues of blossom around the city. 

We once visited Japan and more specifically, Kyoto during the blossom festival. The array of delicate flowers interspersed among the temples was so exquisite. So delicate  and precious it was impossible to capture in a photo or in text. Japan is an enigma to me. A land of contrast and I saw so little of it. I didn’t see Hiroshima or read more about the impact. And after that we went on to Vietnam to be tourists yes, but also to visit our son who was working there. Could a country be more of a contrast to the beautifully designed Japan? Vietnam or more specifically Hanoi at the start of our holiday, has a temple around any corner, a plethora of streets selling one type of clothing etc. There is for example a street of shoe shops, a street with all clothes, one with jewellery  and so it goes on. And then you see the French influence of croissants and baguettes for sale alongside the opportunity to breakfast on pho as the locals do. What was so apparent was that the warmth and friendliness of the Vietnamese is a contrast to the Japanese whose culture favours the inscrutable. It was a fabulous holiday, the type I can only dream of now, given my health and lack of mobility. 

So this summer the goal is to enjoy time with family and precious friends on closer shores but nonetheless beautiful. Scotland too has a treasured scene around many a corner and at this stage in my life that is more than enough. 

And back to that word, terminal. No I'm not there but I know it’s coming but till then I’m living…not dying. I started this poem and so far it’s only one verse…


 Terminal

Is it where the bus stops?

That cold spot in winter

when home beckons 

out of reach

a bleak spot.

Or so it seems from here,

so far from the terminal

and not far enough. 

Tuesday 2 April 2024

The space between here and where?

 I am thinking about how to capture this space between life and death.  But Is it fair to call it that? After all in this space I’ve launched a book. I’ve planned webinars, I’ve been interviewed about assisted dying. In many ways it’s a fertile time, unfettered by work or demanding expectations. The photo below was taken when I was interviewed by the BBC about my thoughts on the issues with regard to the assisted dying bill in Scotland. A challenging issue for which there isn’t one answer. But it’s a good time to explore it. 



The greatest demands for us however come in the shape of a 15 year old tabby cat who has suddenly  become a lap cat from one who was aloof but friendly. We’ve tried to analyse him, perhaps he too was grieving our dog Cara who died exactly a year ago. 

Initially he shunned her bed, a bed he’d chosen to lie in daily during her life then walked away from when she finally succumbed to the growth that stole her later years. She was never aloof -more all embracing and verbose. This year that we’ve learned to live without her has found him emerge with a cheeky confidence; no longer last in line for the left over cheese. Now he spends some time each day curled up on our laps, snoring softly and ever alert for meal times. His transition is so welcome and I hope we are each meeting others needs equitably. He’s maybe just needing more comfort with the passing years, as we are too. Whatever the cause it’s so welcome. 




So this time in my life is about living not dying. But the limits of my energy reminds me daily that this is not a normal stage. On Friday we went to see Hamilton and I was wowed by it.But I could only get evening tickets and even as I was lifted by the music,the talent the whole experience the energy leaked out of me and affected my pleasure in it all. I want to watch it again and savour the experience it offers. In truth it’s not just Hamilton, I’m losing my evenings as I struggle to hold on to the life I have now and letting go of what’s no longer possible. I’m still learning the signals that say stop and unlearn the life long ones that pushed through tiredness and illness. 

Mmm it’s all news and part of me doesn’t want to let go of what was just yet.  



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. 

Are your days special?

It’s been a quiet writing time. But for good reasons in the main. Last weekend we had a special time with friends. We weren’t far from home ...