Our Living well Cancer Course gives much emphasis to living in the moment & mindfulness. Hence, last weekend, when we drove to the Welsh coast, I took advantage of the beautiful weather & a receding tide to contemplate and relax. Standing on the beach, staring at the skyline & listening to the gentle distant ebb & flow of the sea, I shut my eyes and began to breathe, slow & calm as I had been taught. Live in the moment I thought, enjoy the here & now, Suddenly I discovered I was rapidly sinking in the muddy sand....says it all, yes live in the moment so long as you are not sinking in the sand beneath your feet.
We have discussed taking control of our lives and one area that intrigued me was the concept of not talking about cancer, choosing to close the door for a while & move on. So as it was Shrove Tuesday with Lent in sight I decided to have a Cancer Free Day; rather like a Low Carbs day in a diet plan and to choose one day each week to never mention the dreaded word or anything related to it. There's always the worry that if you try too hard and, 'don't mention the war', the subject becomes the classic, 'elephant in the room' and we can't avoid it , indeed we see it, hear it & read it, even more than usual. Psychologists relate this concept to the reticular activating system of the brain which determines how we filter incoming information and what we pay more attention to.
So it was, just as I decided that this was the day that would be my non-cancer day, that the phone rang and it was the Specialist Nurse from the Respiratory Clinic, with news of my previous investigation & biopsy. Now at a time like this you can hardly say, " sorry I'm giving up Cancer for lent / the day", its just too important, indeed your very life might depend on it.
The news was good but it made me think that you cant always plan to follow through on good intentions, however soul worthy they might be.You need to try to change, indeed if you don't, you'll never know what you can achieve. But just discern the important when it happens and make sure youre not on sinking sand as you contemplate your fate.
Otherwise fate itself might just take a hand: the upper hand!
My latest treatment is not strictly medical, involves no clinician and is neither hospital of surgery based. I am attending a 'Living Well with the Impact of Cancer' course, run by the Penny Brohn Charity & funded by Douglas Macmillan.
Its an interesting combination of psychological strategies, healthy eating / nutritional advice & research based 'Whole Person' healing. We are an assorted group of eleven people; all effected by cancer, either as living with, supporting or having treatment for the 'Big C'. Because we all start with a common base of being cancer patients or partners, we don't have to explain or ...., there is a commonality, a link and an immediate trust. Two of the three days are now gone and lots of useful detail, well presented and actively participated in.
But its not the data or research, the advice or the science that really strikes home, its the sharing. We are all on individual paths along a journey of coping with cancer and in sharing / pooling the experiences & knowledge we've each gleaned along the way, we are actively supporting & challenging each other; its a caring conspiracy.
So how does this work, what's it like in practice? Well the best example is from one of my fellow course participants who has just learnt that she has to have a 'Hickman Line' fitted. This piece of medical kit is a central venous catheter used to administer chemotherapy and allow for the withdrawal of blood samples. She & her husband had spent a troubled weekend worrying about this procedure and came to the group with this in mind. When this was voiced immediately people started to contribute; reassuring, commenting and supporting. In particular one lady, who had previously had this done, actually showed the area she had had the Hickman Line inserted. As she did so, I saw fear become diluted and reality and curiosity step in. The fact that something is no longer unknown makes it more understandable & acceptable. It doesn't take away the problem, but makes it a challenge with an achievable outcome ~ it normalises it!
And for me, hearing that others, like me, had some relatives and friends who were less than supportive this hit a strong note and made me feel, "It's not just me". Also, I have been given license to say to people if I don't want to talk about cancer, I'm having a cancer free day and that is so liberating.
Most poignantly, one participant in telling of a friends reaction said, " I still have cancer,, its not curable, four years on...". This opened a door for me, lifted a blind and I could see ahead, I had a future. Where has this taken me; my mum still struggles, my brother doesn't speak to me and I am still incurable? But its about communication, taking back the control & looking at my whole self... moving on.
And do I need a Hickman line, well no; my chemo is over, my veins intact, but I've begun to see an easier way of living with cancer. Ironical, in that my maiden name was Hickman, so I have an original and definitely direct 'Hickman' Line ~ its called hereditary. Thanks Dad!
Blood Test results today were good, I'm within the normal range for any member of the public and this seems to indicate the cancer has not spread. So I tried to write about my emotions, but all that came out was a trite little poem and an affirmation that reads like a prayer. Strange how the word moves you as your world moves on.
Blood fine,
Message mine.
Normal test
News the best
So here's my focus for the next months:
~ Give me strength to hear what is said and understand what is necessary. Not to overthink or overplay the situation. Nor underestimate or underpin the facts.
~ Help me to change my view and accept what's said, to listen & learn. May I Know & act on advice and fight the big battles in small ways.
~ Give me the skills to keep working, but not striving and help me to listen with my body and think with my heart; to have belief/ keep the faith.
~ Keep me focussed' following not analysing. But mostly let me laugh a little and live a lot.
Oh man and I want to live a lot!
Its difficult when you are so depleted & worn low to look at Christmas with enthusiasm. Its a time for family and celebration, reconciliation and joy. Instead I found myself torn & tearful, awaiting the scan and its results; too much emotion, my stress bucket brimming over. Feeling hope yet hopeless, whilst all the time striving to be cheerful, positive, upbeat, in short 'Merry'.
Late on the afternoon of Christmas eve the phone rang and one of the hospital oncologists had gone out of his way to call to inform us that largely speaking the scan results were good. No sign of active cancer in the lower torso, again some anomalies in the left chest area that they wanted to ask the respiratory specialists to consider. Probably not cancer, could be from a previous infection, blood tests should clarify this and any actions could then be decided with the oncologist in January. We were overjoyed, it had worked. All those weeks of drugs, distress ,illness & infirmity had paid off; at least for a while we had a truly positive outcome and this man had taken it upon himself to give us the best of all Christmas gifts with this good news.
So we had a truly joyful Christmas and a tired, but uplifting, new year. We visited France & French friends, languished in front of wood fires and at midnight into the new year drank champagne outside our lovely French farmhouse; looking at the stars and listening to the church bells from the villages and the laughter & distant noise of happy voices.
We returned early January to meet with the lead oncologist and discuss this further & here is where we found a phenomenon we had experienced before & seems almost inevitable in cancer care. Its called confusion...' Medical Mixed Message Syndrome'. Not a true ailment or affliction, but seems to exist whenever serious illness and human emotions need to be considered. Its about how words are used and delivered, its about the academic, purely logical analysis and the experiential voice of reason and empathy with truth.
The news was no different, the facts no clearer or changed, but how the words were delivered and their effect was very different. We were given all the possible outcomes, all the negative possibilities and our questions and the side effects politely listened too and then dismissed.
Its not that the words had different meanings, or that the message was changed, more that the overall effect was undermining, less positive, flat and we came away feeling deflated and anxious. Not till a weekend of discussing and dismembering did we come to realise nothing had fundamentally changed. Then on Monday we had calls from support staff at both hospitals which re-spun the facts, had positive structure and affirmed our pre-Christmas optimism.
Its partly that the minds of some medics are so high functioning that they can't move into the real world of people & empathy skills and partly that they need to deal with certainties and will not enter into the realm of empathy, aspiration and hope. I call it 'Soft Medicine'; the analogy lies in the artistic concept of ' Form and Function', should a design be beautiful for the sake of beauty or should it always have functionality first.
I think our medics have a difficult line to tread; between experiential & life affirming versus academic & clinical accuracy. Its seems to me its all about the spaces between the grains of sand.
They say 'Beware the surgeons blade', but perhaps we should be more fearful of his words.
So far so good and with positive results from the PET scan I moved into twelve weeks of further chemotherapy. Good news was that the dosages were lower & hence the time spent in the treatment centre at the hospital was shorter. However the effects of the polite poisoning was compound and the after effects increasingly unpleasant / troublesome. I struggled to write, fought tiredness & lethargy in equal measures & only have short notes, demented doodles and scraps of poems of this time. These I present as they were written...
4th Chemo
So here I am again, but changed.
Feeling alive & hope unrefined.
Chemo in & chances taken,
Clearer view & not forsaken.
Ever watching people care,
Nurses busy, all aware.
hearing hazy, senses dulled,
What's now normal, sleepless, lulled.
Forth treatment, greater chance,
Wanting so much, brain in trance.
hear the news, ease of pain.
Sitting smiling, hope again!
Writers Damp...Frozen fingers (5th Chemo)
Seems I can't write, lethargic and swollen fingered. More importantly brain dull, my observations limp & sensations muffled. Chemo brain fog slowly creeping over me with no desire or drive to write.
Two hours to go and lymphatic system screaming; words evade, sentences slur and rhyme resigns. Stories & creativity run into a dried delta of debility and delicate delusion.
People chatter assuring themselves that all is well, this is normal, we're all in it together. Stay calm ~ our world carries on
Boring Babble
People, patience.
Patient patients.
Pretending positive.
Solid 'Stokies'.
Streaming stories.
Its an elite club and I've got a long term membership.
Mixed Media (6th Chemo)
L'espoir c'est bon,
L'espor pour la vie.
Peut etrea la nouvelle vie!
Mais oui,
Maybe!
Sound confusions, language twist.
Je suis confuse.
Get the gist?
You always hope that the news will be good, but you don't actually believe it will be.
Sitting nervously awaiting the PET scan results, three treatments on, will there be any improvement, dare you hope? So it was we met with the consultant, hopeful, yet uncertain.
His words." We can find no cancer in the lower body", almost bounced off our radar shield ~ hold on, go back, say that again, are you saying? What does that mean? Apparently the scan showed no traces of cancer in my lower body! Amazing! How? Chemo working, but the result beyond belief. There are areas in the upper body which the medics are unsure of, but they could be the site of previous infection. Hence three more chemotherapy sessions are needed to ensure cover, then possibly radiotherapy (three more, six in total).
I've gone from condemned woman, to life, greater positivity, further chances, time! I want to ask if this is permanent, is the incurable just possible curable, can I overcome this cancer, but I stop short in asking. Afraid of bursting the bubble, anxious to hold onto the good news; silent in amazement, dumb in my hope!
So we leave, everyone smiling, shaking hands, grinning at the clerks, chattering; out into the cold air...then silence. We are silent in shock; holding hands, linking eyes, but barely able to speak.
When we do its a jumble of questions, emotions and confusion. What next? Do we go away for a few days? Who must we tell? How do we deal with what's happening? We rang we texted,, we mailed, we shouted, we cried, but mostly we held on. Starring at each other, our disbelief slowly lifting and still needing some resilience, we began to plan. At home, within the hour, we had broken the news to our world, packed the camper van and booked a ferry for France! We may only have a week before chemo starts again but my goodness were we going to make the most of it. Peoples responses were equally incredible; you don't realise just how much care people really invest in you, it truly humbling!
This may only be a reprieve, could be temporary, potentially is passing, but it had the possibility of permanent. Everything has changed, the norm is different. Its as though magnetic north has changed, our world turns on a different axis. Normality has flipped. We exist in a different dimension. This is truly time travel, we adventurers in a new land, explorers on an alien planet and loving every magical moment
These short poems were written in the endless hours of daily chemotherapy and have taken me some time to decipher & decide to publish, The emotions are raw, it was a time of confusion; twelve weeks of challenge. They are not great literature, merely my reflections in difficult times.
Day Chemo (2nd) ten hours in UHNS:
So here I sit, linked up again,
Pod 1, soft chair, no pain, no pain.
saline drips, machines alarm.
Snuggly settled, civilised charm.
Poison running, vein to vein.
heartbeat drumming; same , same.
Clinical care, calmly run.
Adrenaline, steroid, body won.
What to do hour by hour.
Pass the time, daylight sour.
Get it done, pass the time.
Mechanics running, it'll be fine.
When its over, how will I be?
Nausea, tired, lacking me?
Will I be better, then come again.
Civilised poison, the chalice of pain.
Just let me sleep, let it all go away.
Slumber reality, dream of a day.
Sunshine & lavender, granite & green.
#Sitting beside you, all this a bad dream.
Nine hours waiting; mind on fire 3rd Chemo
Don't be inpatient, nearly there.
Wishing you'd be early, anywhere.
Impatient patient, end of day.
Need conversation, time to slay.
I've written, I've read, created & said.
Soothsayer chair, changes to bed!
Wish you would get here, thoughts in a 'robble'.
Please just arrive, save me this trouble.
Word overload, paragraph feed.
Too may thoughts & ideas to read.
Two pencils broken, two pens run dry,
Endlessly scribbling, time passing by.
So please just arrive now, kiss me & say.
I love you, I missed you, how was your day?
Well I gloried in words, escaped in idea.
Found solice in story to try to be clear.
And now, when you're with me, I'll hole tight your hand.
Hold on forever; Affirmation land!
Forgive Me or Fearful Family
If I become the woman I'm not...If I'm hateful or harming?
Please remember the Pauline that was.
Who loved and loves you forever!
Please forgive me if, in pain or fear, drug or dread
I am not the mother, the friend, the wife or the woman you know me to be.
I love you all!
