Time

Precious becomes pressure and pressure becomes precious

I had to have a spine MRI last week. I have CT scans every 4-5 months, but my back has been hurting and it’s been niggling at me mentally, so we wanted to get a more detailed look to make sure nothing sinister is going on, as my mets (metastasised tumours) are in my spine and ribs. At the start of this adventure one vertebrae was almost all hole - I’m very lucky not to have had spinal cord compression - but the magic of radiotherapy and medication have halted the cancer and allowed new bone to grow there. After nearly 4.5 years on one treatment it’s ever-possible that it will be on the march again, so anything unusual needs checking. The MRI took an hour, in a tube with a cage over my face to keep my neck still, with the machine making tremendous noise like the worst techno you can imagine. I felt jangled for some time afterwards.

In the weeks around scans, especially in this post-scan waiting period, anxiety takes a now-familiar form. Nothing looks different from the outside, and I can be pretty well functioning. In therapy we often look at different parts of ourselves - we all have many, some of which are aligned and some in conflict, some of which are old and some newer, some more flexible and creative, others more fearful and rigid. In these periods I have one part that can be pretty effective in a ‘normal’ way - able to work, to be open and empathic and wander with freedom and curiosity in others’ lands. It’s able to have enormous fun, especially if the fun is BIG and all-encompassing (dancing has been done this month). But there’s another part of me that becomes much louder in my personal space. I mix up my words more, my mind feels blank and listless, my heart closes down to not quite numb but dull, my body feels heavier, more tired and has a low level buzz running through it. This part of me is frightened and fragile. My dulled brain and heart are protecting me from what might be overwhelming.

My concerns in this space mostly relate to time. I’ve discovered it’s easy for everything to become time-related - it seems any conversation can touch my time alarm - and time feels both pressured and precious. Looking ahead beyond a couple of weeks brings panic in my limbs and chest. A cancer progression will mean a new line of treatment, and each new treatment will get more toxic and bring a new hospital regime. Life might not be the same after the scan results. If there is progression, this life - this lovely, lovely life, as I know it right now - won’t be the same again. Of course I’m planning on it still being lovely for as long as possible, but it will be different from this. A new regime to get used to. A new state of health. New medical experiences. Now, waiting for results, I’m working, seeing people, Christmas shopping, putting up the decorations, walking Marvin the whippet, and I’m holding my breath.

Stage IV cancer has brought a whole new awareness of time generally. It’s not easy to articulate. The idea of it is so graspable - I aways knew ‘time is precious’ even if I didn’t always act well on it - but the feeling that it is? I only realise now how limited my capacity to feel this was BD (before diagnosis). I have a pretty high capacity for intensity, but the preciousness of time in this Stage IV life, especially in these scan periods, is I.N.T.E.N.S.E. I looked up synonyms for ‘intense’ and was given this:

All these words apply at different moments. I recently described it as ‘a full humanity right on top of my skin - grief, wonder, awe, love - all the feelings as present as I’ve ever known them. My sensitivity and capacity to be touched by things is permanently tingling.’ This is now how I live, much of the time.

‘Living a self conscious life, under the pressure of time, I work with the consciousness of death on my shoulder, not constantly, but often enough to leave a mark on all of my life's decisions and actions. And it does not matter whether this death comes next week or thirty years from now; this consciousness gives my life another breadth. It helps shape the words I speak, the ways I love, the politic of action, the strength of my vision and purpose, the depth of my appreciation of living.’ (Audre Lorde, The Cancer Journals)

Here’s an attempt to capture how time can make itself known to me in these days, below the appearance of a fairly normal life. Bear with me.

The balancing act between ‘I need rest’ and ‘I don’t want to waste a minute’ is intense. The panic when I think I might be wasting minutes (whatever that means, but I know it includes doomscrolling, which I’m good at) is intense. The fear that I might never recover full energy for life when I’m unwell or fatigued is intense. The terror for the time I might not get to spend - especially with my children - is beyond intense. The yearning for time freedom versus the need for the life-giving purpose and engagement of my work is intense. Trying to live a shorter life fully while investing in the hope of a longer one - especially the financial complications of that - is intense. The utter sadness of seeing time cut short again and again and again as beautiful people in my new world die is intense. The fear of how close future pain and distress might be is intense. The hope that it is far away is intense. Wondering whether to have the negroni or the slice of cake is intense. (In the week I thought I had primary cancer I started to research every diet and alternative therapy. But when I was told ‘it’s incurable’ and thought I would be dead imminently … well - I had to bloody LIVE. We needed all the fun! We need to have a bloody BALL - put the music on and give me a tequila shot! On the occasions I indulge, then comes the questioning - what am I risking? A cycle of abandon and unease.) Trying to maintain a lighter hold on plans, ambitions and dreams for the future is intense. The discomfort when I realise I’m spending time doing something I’m not connected to or enjoying is intense. Discovering new projects or things I love and fearing I’ll only have a limited time to explore and enjoy them is intense. The dates flipping ever onwards towards another Christmas (towards illness?) are intense. Anything that marks the passage of time is intense - I hibernated on my birthday this year when it felt too hard to manage and be sociable.

And my appreciation and sheer love for the time I spend alive is also intense. Starting the day with sunrise over the South Downs from the bedroom window. Spending time drinking tea and chatting in bed with Al, with Marv resting his neck over my ankles. My relationship with Al, still deepening after 33 years. Each tiny moment of connection with my glorious adult children, seeing their lives unfold. Hearing friends laugh - their pleasure brings me pleasure every time. Time laughing - and crying and exploring - with my friends and family. Time being so human. Noticing the small transformations of the woodland avenues on dog walks. Seeing the South Downs gently folding into each other with their faint aura of ancient magic and mystery, different each day depending on the light. Listening to birdsong, or rain, or gales, or children walking past my office. Making a small contribution to new legislation. My ritual of blueberries with cottage cheese, walnuts, seeds and cinnamon for breakfast. Time spent having illuminating and courageous conversations with clients who never fail to expand me. Time hearing chord changes or vocal tones in music that cause soul tremors. Time spent with Aretha, Mavis, Amy, Carole, Sinead and Joni. Time reading poetry that shows me something I already know in a way I’d never noticed. Time spent learning new ways of being useful to people. Moments in Brighton - seeing someone walking past Aldi with a bright green parrot on their shoulder, and the small acts of generosity from people smiling at him or not batting an eyelid. Time spent hands-in-the-air gleeful dancing with my sister-in-law. The astonishment, pleasure and delight of all these things.

The sorrow I feel and the wonder I feel in the biggest and smallest of things are both intense.

This doesn’t necessarily always make me easy to live with.

Sometimes, I’ll admit, I want to scream ‘don’t waste my fucking time’ so loud it might stop the world for a moment. In scan weeks this urge gets stronger. I don’t - it’s mostly not fair or reasonable, though on occasion I wonder if it might be a handy kick up the arse if I could give it a go. (I can rage in private - I enjoy it - but I’m still guided by so much gender and English conditioning when I’m with others, even when it’s righteous.) My history has made me into a relatively undemanding person, so it’s an adjustment for all of us that I’m taking steps - still small, I’d like to be braver - towards asking for more without guilt or shame. My tendency has been to do things alone, not to bother others with things I don’t think they’ll be interested in. But as I’ve said in other posts, my relationships are the most important thing and I want to do the things I love with the people I love. So I’m slowly finding the courage to request a bit more of others, to invite them to come along with me for the intensity of this ride. I’m still not great at it but I’m getting better. Here we all are, right?

I could, perhaps, try to make my living less intense, but I can’t figure out how I would do that and not have that itself be an enormous waste of time. Because the only way I can imagine doing it is to try to feel less. And one of the scan-time experiences that makes me saddest is my blank mind and dull heart. Being able to feel brings pain and confusion and fear for sure, but it’s also wonderful (really, wonder-full). It’s so fucking alive.

‘I didn't want to be comfortable. I wanted to be awake, alert and alive to what was happening to me. I wanted to feel: to taste the bitterness of regret on my lips; to let fear rattle my my bones like the bars of a cage; to catapult my rage at the furthest stars; to break with loving all I would be leaving; to smell gratitude in the pollen of my memories; to stand under grief's exuberant waterfall until it washed me clean of shame.

I didn't want to miss this. Any of it. I didn't want to diminish or dramatise my experience. I didn't want to drown in despair rendered by history books of hopeless cases and inevitable endings, and I didn't want to ice over my abject terror by pretending to be positive about the most devastating thing that had ever happened to me. I wanted to be real about everything.’ (Sophie Sabbage, The Cancer Whisperer)

I wonder if I might change my mind a little as the cancer progresses and the treatment becomes more affecting. I wonder if there are things I’m heading towards that I won’t want to feel. Maybe not, but the thought is alarming. What if I’m in my last - what, weeks, months, years? How long have I got? - of feeling? What if there comes a point when I can no longer bear it?? I need to do so much feeling now, just in case. Feel it all. Don’t waste a minute.

‘The only answer to death is the heat and confusion of living … Now I am anxious for more living - to sample and partake of the sweetness of each moment and each wonder who walks with me through my days.’ (Audre Lorde, The Cancer Journals)

Because also, I can’t turn down one feeling and not turn down the others, too. So to reduce the intensity of fear would be to reduce intense joy, intense wonder, intense sweetness, and intense love, which is all of those things. The fear wouldn’t exist if I didn’t love. Nor the loss, nor the pain, nor the grief, nor the anguish, nor the absolute boiling rage.

All those things I feel because I love - all of it, all of you, being alive - and I can’t stop doing that now. I don’t think I’ve always been very good at it - being loving, to myself or others - but I’m determinedly working on it. And if not to love, what else is time for?

My insides to your insides.

Till next time

H xxx

Things I’ve enjoyed this week

The Book of Delights, Ross Gay - perfect scan-time joy.

The Bear, season 3. I loved it loads more than the reviewers.