Rollercoasters and life with cancer

 

What goes up must come down.

I remember the chant from our favourite Disney ride in Florida. It’s beyond corny with chipmunk voices and puppets along the train route of Big Thunder Mountain. The ominous warning within the song as the wee train gradually climbs and then it comes-the drop-the cheesiest of roller coaster delivers the thrill. Wide smiles and pleas of can we do it again? Our kids were still young enough to enjoy the simple joys of Disney.

I was never particularly interested in going to Disney but after Andrew went on a business trip to Orlando, we decided that we should treat ourselves. It was the year after I had breast cancer for the first time and a year since my Dad had died. Our lives had been heavy and hard, with too few smiles and too many tears.

I’d love to tell you we planned it financially and budgeted wisely but no-it was way more impulsive. We blew a hole in a credit card and gave ourselves an early Christmas gift in October and had a blast! We laughed for two weeks and made memories. It was a different kind of therapy but therapy it was. And there were tears too as i realised my fatigue could not be pushed through and the 

tamoxifen caused a sleepiness a bit like that caused by pregnancy. I learned to create space for that and not to fight it. Finally it helped me accept this rather than rail against it. I don’t remember how long it took to pay off the holiday and don’t try this at home folks! It’s how credit cards make so much money but in a funny sort of way it saved us as a family. I’m not even sure what I mean by that but it was a significant stage in our lives and I’m grateful for that.

So why am I thinking of Big Thunder mountain? It’s because I recognise these last few months I’ve had a good spell, I’ve been happily enjoying that. Making plans, getting tickets for Edinburgh fringe, organising visits and pushing all concerns about secondary to one side. But these last few I’ve not done so well. Most noticeably my legs are swollen and won’t go down and I’m feeling queasy and the fatigue is back. My eyes close like the dolls we used to have when I was little, tip her slightly and she closed those eyes without effort at all!Thats me. I find myself saying please don’t take it personally. It’s not you, it’s me! 

Or more accurately I’m anaemic again….likely it’s caused by the oral chemo I’m on. The reduced dose means I’ve tolerated it for longer but it’s finally accumulating in my system and my quality of life has declined again and some of my plans look less certain or that my pacing needs to be tighter. Of course I knew logically this would happen but I’m heading back to a less certain time and if I can identify a feeling related to that it would be sadness. And an associated reminder to be grateful for all the special people I have in my life. 

And greatest thanks of all to Andrew because he enables me to do what I can and without him I’d be able to do a fraction of what I can. I don’t thank him enough I suspect. But please all of you who know him feel free to tell him how special he is. 

With our friends new puppy.

Thank you , Andrew, with all my heart ❤️. And right at this minute he’s making my favourite dish, cauliflower cheese. The smell is permeating the downstairs of the house. Making the favourite meal for someone who feels nauseous all the time is a real act of love. ❤️ 

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

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. 

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. 

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.  

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? 

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.

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. 

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. 

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!