Exploring JOMO……and the love of cats and dogs.

 

Just as eskimos have so many words for snow, I have many many ways to describe needing a nap. The only other household member who rivals me in time asleep is the cat. But when he ( and I ) are awake we try to fill our time with experiences. Our boundaries are fairly similar too, EH? and no further! If I too could climb a fence I would sit on the roof and survey the surroundings and catch a wee glimpse of Arthur’s seat. He’s even taken to sitting in front of the TV when it’s on. It’s not just to watch the ball in sports but last night it was silent witness.

I dare say a job as a pathologist would be quite appealing to a feline? Or it’s maybe just to annoy us? He’s also taken to sleeping in my wheelchair….even I don’t do that! Don’t suggest he’s looking for a new bed, he has many many beds to sleep on but he chooses a cold memory foam cushion on my very ordinary wheelchair. He likes to keep life on the edge you see.

I’ve been very anaemic and so sleep has been my friend. But the fatigue remains, even following two units of blood. However the sleepiness has subsided and my mouth is no longer as sore. So my life has a simple rhythm and I find that I like that. All my life I have been plagued by an element of fomo ( fear of missing out) but now jomo is my mantra ( joy of missing out). It’s predictable, yes , but comforting too. 

February is bowing out and the sun is getting deeper into the house as it’s rising for spring. But it feels a bit like I’m in an autumnal phase, shedding some burdens and even resigning from the government committee I sat on.There’s nothing quite like serious illness for helping you see how you want to apportion your energy. With great clarity, I knew it couldn’t be that anymore. I’d love to write more but sleepiness doesn’t help clarity of thought. 

I’ve been doing some mindful knitting. It needs to be small and easy; a modern equivalent of knitting squares for a blanket I guess! Just now it’s headbands that I’m producing and enjoying giving them to family and friends. I guess some may never grace the outside but it’s a wee bit of knitted love that I gifted with great pleasure. And if it stays in a bag or drawer I really don’t mind. I even do a matching line in dog snoods. Now there is a niche pairing! The cat would not appreciate being dressed up so I haven’t gone there.

Our darling dog Cara is struggling more now with pain in her back leg. It’s carrying so much ( having lost a leg three years ago now) and she also has a soft tissue sarcoma on her back that seems to grow before our eyes. The time approaches for us to make a decision about her quality of life and when to let go. It’s beyond painful but we can’t let her down. She’s a dog who spreads love and kisses to all her fans. It’s hard to think of losing her. Everyone says you will know when the time is right. I do hope we do but thankfully it’s not yet. We need to focus on gratitude for the love she has brought to all of us for as long as we have her. 

The murmuration of fatigue

 Murmuration 

The starlings swarm 

with grace

dark and ominous

compelling as they move.

Its presence echoes

the fatigue that 

defines my day

my life.

Ennui cautiously plots

my movement

shaping my day

my life.

Rest, sleep and recover

my defence 

as the starlings 

sweep and turn

signalling goodbye.

A statistic in the NHS crisis.

 

I can hear the noise as my chest moves up and down. I look around for the cat, the phantom snorer in the house. No-not here. Then I cough and it changes, of course it’s the wheezy crackles that have been my soundtrack since Christmas. Much improved, so much so that I’m free from the hospital bed and back home. Christmas has been packed away, a new year welcomed, gifts sniffed and tried-some eaten and life has returned to a normal rhythm. Except I feel so different. I’m depleted and fragile. I feel like a two dimension of my three dimensional self. 

Christmas itself was full love, fun, games, amazing food and great company. By the 27 Dec most of us had flu symptoms and were slipping down a slope still saying we were fine. By the 28 I gave in and asked for help. I was admitted to hospital and despite a brief return home, I stayed there until Jan 11. It shocks me as I write that. Those days melted into the new year, never to be reclaimed as I got the help I needed to recover from Influenza A, Covid-19 and chest infections. My recent cancer treatment had resulted in anaemia which meant I was very susceptible to infection. Perhaps perfect storm is an over used term but it’s what it was. Andrew too has had flu but it seems not covid. He’s finally recovering and my admission at least meant he could recover without having to be a carer. Because carers dare not get ill, it’s the 24 hour job with no time off.

 “The NHS will last as long as there are folk left with faith to fight for it” 

Aneuran Bevan 

I’ve been a statistic in the great NHS crisis narrative, fuelled by a harsh winter reality and a right wing media relentless undermining of a service under huge pressure from rising need and the aftermath of a devastating pandemic. This is not a service that’s failing, it’s a service that’s being failed by a government who are in turn failing in their duty of care to their citizens. And if you think I’m over egging this, remember this is the government that wants to reduce our human rights and walk that information to its inevitable conclusion. 

The anger that arose as I write this shows my energy is improving. But mostly you find me reading, listening to podcasts and watching the odd series. The content needs to soothe my weary bones, provide an optimistic hue over these January days and not be too demanding! It’s a delicate balance and a tough ask. So far Slow Horses on Apple TV has kept me awake and engaged more than anything else. Watch it from series one, you won’t regret it. 

And finally covid did not show up on the LFT we did at home, it was a PCR on admission that identified influenza and covid. My best advice is wear a mask and if you aren’t well, don’t mix with people until you are better. And get your vaccines, it’s never too late. Yes I was fully vaccinated and maybe that’s the reason I’m home now and recovering. 

I’m completing this blog with my humble thanks to everyone who has helped us through and a special mention to Cat who has been awesome. She makes me laugh and feel loved all in the same breath whilst confidently and kindly making her special difference in the world. 

Till next time, you will find me resting sooooo keep the noise down, eh? 

Sending thanks for all the kindness, cheers 🥂

 

The experience of kindness 

It’s the time of year when amongst the stress of shopping and planning and paying for Christmas, there are the lights, the music and the kindness that make midwinter exceptional. My ability to enjoy this time is dependent on my ability to balance these polarities. I started to speak about my Mum recently who died five years ago and suddenly the seal on my emotions burst and the tears came. They were tears of loss which were unsurprising but beneath that was so much more. And generally it’s packed away at the back ot the wardrobe, never to be examined. Well at least not with an audience. I’m a proponent of the talking cures but maybe a wee bit guilty of not always engaging with it myself. 

As regular readers know it’s been a hard year. Two lots of surgery and a course of chemotherapy. And it’s the year my cancer moved from curable to hopefully manageable. A gentle way to say it’s stage four as the cancer has spread from my breast to my liver. It’s not large and is not giving me symptoms but I’m in the world of crucial scans and breath held as you wait for results. Early January is the next big one and I’m a bit scared. There I’ve said it. But I’m not going to focus on it over the festive season. Christmas is busy, fun and poignant too. Our Ukrainian friends have become part of the family, as this time has confirmed. They enrich our lives but we are very aware of the challenges that are back home and the mixture of feelings that accompany sharing in the happiness of our Christmas. 

The world feels such a difficult place this year in particular with Russia’s attack on Ukraine, the poverty worsened by global effects as well as political decisions closer to home and the evident suffering across the UK. But it’s been important to celebrate all we have and all we are with the people we love. And in the midst of the despair for some there is kindness that makes every day better. 

I’m reminded of the carers who help me on weekday mornings. Not only have they shown me care and kindness, they’ve become dear friends too. And the special family who help us in the house garden and even the animals are a precious part of our lives who brighten the day and week. 

We’re so grateful to all of you who have helped us this year, especially our family, friends old and new and all the health and social care services that I /we engage with now. In an NHS and social care system that is under enormous pressure we have met skill, compassion and a timely service when needed. Maybe I’m just lucky ( :0) or maybe many services are often much better than headlines would have us believe. Don’t get me wrong we definitely need more investment in health care and social care, including paying them better. But it’s important too to recognise and give thanks to where it works well. 

So I want to end this blog as 2022 closes too, saying thank you to everyone who has touched our lives this year. You’ve made it special and helped us be able to look forward with some hope into 2023.

Wishing you all a very happy festive season and may 2023 bring you all kindness in its many forms💕. 

Breast cancer is a thief…

 

The view from the cancer assessment unit above, the bonus of a trip to the oncology centre in Edinburgh! 

I wrote the poem below in October which as anyone affected by breast cancer knows it the breast cancer awareness month. I tried to avoid the cliche of posting this then. As breast cancer doesn’t go away come November. It’s there all the time, even when treatment is over. Of course as time passes it fades from the forefront of your thoughts and becomes a background hum you can’t quite switch off. And the hum gets louder as new scans come around or unexpected triggers hit you in the solar plexus. Andrew once said after an appointment which although reassuring was stressful, he reflected “it never goes away”. It’s the fear that is so easily triggered especially if the cancer advances to secondary breast cancer. I’m regularly at the oncology department now and most times there is something that worries me. My most recent is anaemia after starting the new drug. 

I’m a sleepysaurus and indulging in audio books and Netflix. Any recommendations are welcome, by the way! But Christmas is coming and I’ve been doing my best to plan ahead. I know it will be fun and I’m determined not to get stressed! But it's hard to think of the many people who approach the holiday worrying about money, missing relatives from their homelands or trying not to think that these special times are now numbered. I’m trying to do my best to help in whatever way we can. But it’s the connection I value at these times, not gifts or groaning tables of food uneaten. It’s important to remember that when I fret about gifts or when I feel tempted to over order food! 

This year when we’ve seen such a fractured world and deepening poverty and for me personally i’ve had to face  the spread of my cancer, time with those I love is the most precious gift of all. 

So here’s  my poem straight from the fears and the love at the start of advent.

Breast cancer is a thief

Stealing health

Stealing peace of mind

Stealing future dreams

Breast cancer changes your body

Changes your hopes

Changes your friendships

Changes your energy

Breast cancer makes you grieve 

for so many things

But - cancer showed me I’m loved

and I’m so grateful for that

At the end -and the beginning and all way through 

it’s really only love that matters.

The Struggle Bus

 

                                                            Image of the struggle bus 

I’ve been quiet for a few weeks online. I’ve got new medication, followed by covid then antivirals, antibiotics and a cough that scared the horses that are all to blame for the radio silence. 

I’m scared to say I’m improving but I think I’m having more good days. Strangely the virus seems to have increased my pain so as well as my cocktail of pain killers, self management techniques I’m adding in CBD oil. I suspect it’s helping and like everything it’s a learning exercise. Like life itself really.

A diagnosis of covid changed plans yet again. How much this pandemic has shaped our lives this last few years. As always our friends and family were attentive and kind. We realised after we were both recovering how worried others were for us but we both realised that we weren’t too bad. Although it’s been slow to cast off the tiredness and for me pain has been a daily and nightly challenge. A weekend away has intensified the fatigue and pain as well. It’s also made me realise that holidays far from home are just no longer sensible or even desirable. 

It’s a loss realising that but it’s also a relief. I’d been torturing myself with ‘shoulds’ and now there is peace in accepting what is my reality. But we live in a stunningly beautiful city and country with so much still to discover. And with some good fortune sometime still to explore it. So long as we can find accessible places to stop! That frankly is a whole other story or blog. 

I heard a great saying recently -I’m on the struggle bus-. I’m definitely on the struggle bus just now and like too much in this world, it’s definitely not accessible! 

You see when things are accessible I can enjoy life just like everyone else. So credit to the Usher Hall in Edinburgh. Yesterday we went to see the Belgian National Orchestra playing a few classical pieces, most notably the Sans-Saëns Symphony No 3, the ‘Organ Symphony’. We had an amazing seat and simply wonderful experience. When access is good I feel relaxed and equal in the world. Frankly it shames us all how unusual that is my experience. 

Me waiting in the concert.

The best view of the orchestra.

Who dreamed of being a princess?

 When I was a wee girl I never dreamed of being a princess. For years I wanted to be a cowboy. In particular I wanted to be a certain Cheyenne Bodie-a good guy in the main. Maybe I just thought he was big and handsome but I’m told I wouldn’t answer to anything but Cheyenne for some time. I grew out of it as you will have gathered but never wanted the princess look or life ever. Perhaps that meant I was never likely to be pro-royalty. Mostly they didn’t interest me and as a concept I believe an inherited monarchy is very outdated for our times, as well as a barrier to a fairer society.

But nonetheless I shed tears yesterday when the Queen died. I’m 66 and she has been there all my life. A constant, a symbol of loyalty, duty and service that seem so lacking in many in public life. I saw her twice in my life. Once we queued up as a family along the Royal Mile in Edinburgh during one of her yearly visits to the Capital. On this occasion she was in a royal carriage moving slowly between the Castle and Holyrood Palace. Perhaps I was even waving a flag as so many have done before me, I don’t recall. But I do remember being deeply disappointed. Because she didn’t look like a Queen at all! There was no bejewelled dress, no ermine cape and worst of all, no crown. She looked like my Mum you see. Now my Mum was a pretty woman and always looked nice. She was always well turned out! But not like a Queen. Queens shouldn’t look like your Mum. I went home very deflated. By the time I saw her for the second time, I was prepared to see her without a crown or even a tiara. It was at the Royal Garden Party in Holyrood. She was in the distance and I wasn’t one of those selected to be introduced so she was a distant figure in the crowd. 

She still looked like my Mum. My Mum was much the same age and they shared hairstyles from the glamour of the 1940s and 50s to these later years when the soft white curls were kind to their older profiles. My Mum died five years ago now and there is no doubt some of my tears yesterday were for her too. And I wanted to call her to reminisce and see how she was. Grief is never simple. I’m sure many yesterday had great empathy for the family gathering together hoping to get some final moments with her. Those journeys are so painful in their urgency coupled with dread of the letting go. 

Of course grief has been especially present for me recently. Knowing I now have stage four cancer has triggered my own grief. I’m trying to make sense of this time and feel a drive not to waste the time I have. I’m worrying for my family and how they will be once I’m gone but I know they will be ok in time. There is a selfish part of my grief as I don’t want to lose them. But that is life and loss and if I allow myself to sink into this grief alone, I waste this precious time. I’m determined not to do that but also I know to allow a place for my grief. 

So as I grieve for the Queen my tears will be a complex mix, like most of us. Tears for her loss and her family’s too, for this fragile country and what will become of it and for ourselves triggered into recognising our own grief. As she reportedly said herself, “Grief is the price we pay for love”. So in this blog I’m giving thanks for her life as one well lived and for my own family, those who have passed and those so precious to me now.Every hour with my family and friends will all be treasured.