Picking up on something @Duncan said about stress on another thread, I was wondering what methods have you used or developed to cope with the stress of your cancer?
As part of a “Return to work” study for people who have ended up in A&E from a traumatic incident during certain dates, I was given access to both an occupational therapist and a psychologist.
Besides the practical aspects of recovering from the physical impact of the incident, the financial help (unless you are self employed, cue lack of Titanic life rafts ) and coping strategies to manage long term pain, a big part has been discussing the mental impact of trauma.
The need for a support network of people who are just there when you need to reach out, be it one or two people or a local village of support networks. Something that recent studies have realised that have disappeared in our post industrial revolution landscape and is conflicted by the use of social media to replace our “Tribal” survival needs.
We talked about various methods to regain a sense of personal balance in an ever shifting world. Learning ways to use our inner evolutionary skills of survival in a modern world.
From deep breathing as a way of taking control of your body, creating a sense of space for ourself within a crowded environment, to using creative outlets as a mediation on focus and letting our creative brain be free. To learning to be able to give yourself “permission” to flow with the frustrations and pain and all the emotions contained in that, but learning it will pass and not hold on to it.
To find ways of acknowledging the part of you that is the cancer, but not allow it to be the definition of you, another easy label for the world to identify and put in a box.
The uncertainty of living with a cancer that most people will not see, so you lack the “badge” on your chest, but with a cancer who will try and lead you in a dance if they get the chance to highjack the radio station dial.
I use short stories, my photography, music, walking in nature, deep breathing, surrendering to the moment, the odd glass of aged malt (natural blood thinner 
), talking on this forum rather than chasing top trump blood counts sites, accepting this is always going to be a personal voyage of learning no matter how many people you have around you, but also learning to accept the random hands that reach out to you along the way.
So back to the question, what have you found helps you deal with the stress of having a dance partner called cancer?
Hi @clickinhistory thanks for your thoughts and experiences on the unseen side effects of our diagnosis.
Interesting when I was diagnosed I suddenly changed from being ‘Erica’ to being seen as ‘Erica with leukaemia’ which upset me, however I was very emotional and to be fair ‘thin skinned’ at that time.
Now it is just a condition, along with others, that I live with and at the moment a sore toe that I have just banged, again, that is affecting me most.
I attach the Blood Cancer UK link to mind and emotions which you might have seen before.
Blood cancer: mind and emotions | Blood Cancer UK
As you know I am a Pilates girl and a walker.
if you are nosey, as I am, it is the best free exercise. Sometimes when I leave our flat I do not know where my twinkle (except my bruised) toes, will take me. I am extremely lucky as there are interesting streets, houses and shops, parks and a river towpath within my radius, so it is as my mood and need for toilets takes me.
I have my music playing in my ears, it is a eclectic mix from the 60’s onwards.
When I was first diagnosed I did speak to a professional to come to terms with it which helped.
I have a head in the sand hubby, but I have realised who my true friends are who I really value, they are priceless.
I can also be say how it really is for me on this forum which is also priceless.
So that is my five pennith worth.
It’s always an interesting discussion and I love hearing about how others manage and relieve stress.
For me it’s swimming. It allows me to just forget and take myself to a different place. I always feel calm during and after this time.
I think I’ve become quite selfish, or perhaps it’s just me taking good care of myself and saying no to things I don’t want to do instead of trying to please everybody all of the time.
I love driving and my audio books make the journey even more enjoyable, to the point that I will drive a little longer to listen to a little
more.
So that’s me, I lookforward to hearing from others from others X
@Erica had you down as a boombox on the shoulder type of lass as you strut the hood You have the lingo given the tut tutting by the neighbours after hitting your toe 
What is it that Pilates (other Roman and Greek philosophers are also available) gives you?
@Nichola75 well you are no longer in control of the snack shop, hiding all the good biscuits with your selfish gene
Was it a slow process surrendering to your Dark Lord status of self worth or a jump?
Think I have been stuck on the junction while you go round the roundabout waiting for the chapter to finish
Talked to someone at the hospital about this today, they answered they bake bread.
They said they enjoyed the workout of kneading the bread, the resting as the bread proved and then repeating the process and of course eating the product at the end.
Sorry not to respond till now @clickinhistory, been enjoying the Oscars pomp and circumstance this weekend.
Stress is to be expected when living with these blood cancers, I’d say. We’re stuck with these often invisible disorders that are potential death sentences and it would be weirder not to get stressed by it all!
I think about stress a lot as I lived with PTSD prior to diagnosis with Polycythaemia vera (PV). PTSD’s main symptom for me is sudden wild anxiety that just takes over and causes all sorts of vile side effects which can take me hours, if not days, to return to some sort of normal equilibrium.
Some stress in life is normal as you know. It’s a primal urge to warn us of dangerous scenarios and can be sort of helpful, you know, like when you’re confronted with predatory wildlife, sudden avalanche, or other unexpected danger. Living on tenterhooks whilst in between our appointments or dreading a test result, however, is just such a massive drain of energy. Being hypervigilant about something that may never come or test results beyond our control seems like a cruel use of our innate stress response! But that’s what our unconscious does to us at stressful times and our bodies react. Thanks, stress hormones!
But no thanks to the constant vigilance, being startled easily, the exhaustion of being wary… It’s knackering and can lead to panic attacks and physical issues due to the excess stress hormones doing damage to our bodies. That’s an anxiety attack or few away from panic disorder, which I wouldn’t recommend to anyone.
I think you’re right @clickinhistory about acknowledging the cancer being present and trying to learn to live with it while not defining us. Easier said than done! You’re doing such great stuff to alleviate the stress of living with blood cancer, much of which psychotherapy shows is helpful for living with PTSD too. Let’s face it, many of us likely have trauma from what led to our diagnoses, if not the aftermath of surviving. Some of us who got off lightly in terms of diagnosis without horrific hospital emergencies can still be traumatised by our sense of self getting so distorted by big scary cancer. History and culture tells us that the big C is something to be terrified of, and our minds and bodies react accordingly.
So yes, keep up the art-making, the forest-bathing, swimming, walking, breathing, stretching and living in the moment I say! These are all proven ways to reduce stress and its hormones which linger on long after anxiety attacks and can make us so knackered and highly strung. Finding gentle ways to express the stress, to externalise it so we don’t carry it around, is the trick. We can find our favourite ways to get it out of our systems. For me, getting absorbed in music, hiking and expressing myself in writing and art are the main ways to rid myself of stress. For others it might be diverting enough to follow a recipe, go dancing, or tend to children and/or companion animals. Some folks will need anti-anxiety medicine to knock those harsh edges off the anxiety. Others use weed!
For those who want to read more about how trauma can affect us I always recommend The Body Keeps The Score by Bessel van der Kolk, he’s really a pioneer in understanding and describing trauma and anxiety and their treatments, namely trauma-informed psychotherapy and EMDR. I have EMDR and it’s incredible for processing traumatic memories and filing them away safely where they should be. Dr van der Kolk also happens to be a proponent of all the research going on with psychedelic-assisted therapy that has proven psilocybin and MDMA to almost completely undo the worst of PTSD. I can share more about this too as I’ve attended a couple psychedelic-assisted therapy conferences and the evidence is really positive.
Anyway, I’ve gone on a bit. Keep asking these questions, @clickinhistory, it’s so helpful. I hope you feel you’re finding healthy ways to express your stress so it doesn’t keep lingering. Such pesky stress!
@Duncan if you can get this, you might enjoy this discussion,
and this is on later tonight
Seems EMDR is a topic of contention but if it seems to work for you.
Though given your mention of the Oscar’s, a session in a John Paul Gaultier/Dolce & Gabbana at their 80’s riotous colours height slide show might be a cheaper option
Lovely, thank you so much for these @clickinhistory, they both seem to play here. I’m even able to listen to Cerys Matthews on Sundays, obviously a few hours later so no calling in live for requests these days.
Just listening now and totally concur with what I’m hearing. Nice to know that people using therapeutic psychedelics in the UK acknowledge that they need someone to be with them and guide them through the experience, in the same way that indigenous folks around the world who’ve been using these techniques for millennia wouldn’t do it alone. It’s so much about one’s emotional safety being contained and reflected back by the healer/practitioner in the same way that good non-psychedelic therapy can over time.
What’s mind-blowing for me from what I’ve researched about psychedelics and my experiences of therapy as a client and psychotherapist is that these natural substances can work to undo complex trauma in just one or two sessions! They work so powerfully that just one dose can be enough to help bring on major realisations that can otherwise take years, if at all. Imagine if other forms of therapy were that effective?! No more years of wrong diagnoses, antidepressants that don’t really work, or difficulties finding affordable EMDR therapy.
@Duncan remember the story of the old zen master and the pupil,
“why did you make walk up the mountain and through the forest with this sack when the answer was in front of me all the time?”
“Would you have understood it better if I had showed you the short cut?”
Or the Yellow Emperor and the peasant carrying the the sticks in the forest understanding enlightenment and what comes next?
Ha I do recall these. Love a good proverb or idiom, especially nature-related. One I carry around reminds me that there’s always a valley before a hill—helpful for motivation when I’m tired of hiking up a nasty ascent or have a long journey ahead. It does seem that patience (often a virtue in proverbs!) and lived experience can help us tolerate the long-haul of these disorders in our daily lives.
@Duncan I was talking to a couple who run a great snack wagon in Wales this week, talking about her medical issues being missed, having to drive 120 miles to a hospital instead of 5 miles to their local one, their grandson being in and out being tested, mentioned I had blood cancer.
Usual response, “but you look so healthy” and discussion of medical stuff over coffee followed.
She said the best bit advice she had got was a nurse on the night shift when she was not sleeping, going over the past etc. “Look back and understand, but also understand that without the answers you have today, the past would still look the same.” “Just be kind to the past you who didn’t know any better.”
As it is coming up to a year since my marriage ended, closer to the crash date, looking back and seeing the effects of my cancer symptoms on my self and those who I love dearly and who I have lost, these words reminded me of my journey to now.
I can not undo the pain the cancer caused on others, I cannot undo what it has done to me and the man it took away, but now I have answers, I can choose to be kind to the man who I had become.
Self forgiveness is an ego based illusion to justify yourself.
I live with the awareness of the cost of my cancer hiding itself in plain sight.
To cope with that is allowing my self to feel that sadness, feel that pain, feel the hurt, feel the loss but not hold on to it.
That is why I asked the question, because it is not just the stress of the now with our cancer, sometimes it is the weight of our past, the could things have been different if I was diagnosed sooner, if I had spoken to the doctor sooner, talked to my partner more, opened up to friends more.
I used to teach/coach small businesses in Time and Stress management and find myself going back to those sessions now and bringing them into my life now.
The breathing, the Taoist/ zen teachings, the old ways of being in the now all are the tools I have come to use to manage my stress with this dance partner called Polycythaemia vera (PV).
Aww iawn! How was the motherland? I imagine you were in north Wales as it’s sparser. I can empathise with the difficulties of that snack bar couple, my grandma had to leave her lovely home to live closer to us as there wasn’t adequate healthcare nearby enough for her needs. I dread to think what living up there would be like with an Myeloproliferative neoplasms (MPN) 
I totally know what you mean about tending to your younger self, and maybe wishing you could go back and advise him, teach him some shortcuts to avoid issues in later life. A concept that comes up a lot when reflecting on our younger selves in therapy is a desire to do it again but better, and it became quite pacifying for me in my PTSD therapy. This idea that I could embrace my younger self and protect him was revelatory, helping me to gauge what I knew then and what I feel now. Obviously we can’t go back, but we can in our minds and in how we treat ourselves now. We are still our younger selves, we carry our inner children with us, and it’s never too late to show ourselves the care and support we would like to have received at those key moments.
I think what you’ve written is really profound and quite a major realisation to come out of all this pain and loss. Hopefully it feels helpful to notice this in yourself? It can be really sad too to acknowledge those missed opportunities for self-care. For me it was a way I could undo a little of the hurt that my younger self carried. I’m so sorry for what you’ve been through, dear @clickinhistory. I hope these anniversaries of such difficult loss are tolerable, please keep reflecting on them.
Unsure if it’s relevant as I don’t want to overshare or hijack this thread, but I’m doing a writing workshop and one recent exercise seems relevant here, the idea of what would I want to say to myself at diagnosis with Polycythaemia vera (PV). It’s a bit free-associative and wanky but I’ll share it here:
Your Emotional Blueprint
About this new bloody cancer
What would I want to know?
Be wary of automated test results
Shattering illusions of healthfulness
It may have been there all along, in those ailments and blood counts that never made sense
I hope there were no emergencies
Escalating your shock diagnosis
You’ll want to search it all out and shrink into the minutiae
Fall into the spaces between acronyms
Hope you read it wrong and got stuck on the odd words
Cling onto the spaces full of maybes and plausible deniabilities
But don’t
Don’t search without purpose
Find a trusty source, look for experts, those who’ve lived what you’re living now
Once you know where the rough edges are, check how your feelings fill it up
What are your first impressions?
How do you demarcate from old and new?
Take note, express, reflect—here is your new blueprint
Your emotional blueprint will chart it all
Those first blurry marks, like a shaky diagram, will be the map you go back to
But what is in your blueprint?
Make sure to trust it—you’ve mapped your life better than anyone
Trust it over your inanimate diagnoses from those who haven’t met you
Remember to cherish your former self from the before-times
Because it’s still you, just with additional pages
Page after page of someone else’s notes from the now-times
Only you know what was normal and what now feels abnormal
This is your guide back to your new picture
Where you’ll find you’re not alone with this at all
You’ll come to see you’re part of a team that will help you reframe, I promise
Also, slight aside, but I’ve yet to be told “you look so healthy!” like you, which is now making me wonder just how haggard I must appear 
Oh @Duncan and @clickinhistory being told that ‘oh, you do look well’ is my biggest bugbear, especially when I am feeling really yukky inside.
Oh @Erica, despite my joking I can imagine the mismatch being very frustrating. Kind of like the opposite of being told to “cheer up, it might never happen” when you feel fine, or another one I hear when simply sighing is “what’s wrong?” as if breathing out indicates something calamitous! I’d rather be asked how I am.
Dear @Erica, I am so absolutely with you on this one too. On the one hand it’s very frustrating to be told that “you look so well”, especially when you feel so rough in so many ways yet, on the other hand, I suppose that it is a sign that we are coping with our C dance partner.
@Duncan Pembrokeshire near Haverfordwest and Narberth, which given the mass of money being poured in to connect this gem of an area to the rest of Wales, makes it a head shake.
I like the conversation idea, so were you doing it as Michael Parkinson, Jeremy Paxman or USA sofa day time tv presenter? Could make a wonderful sketch show
As for that wonderful phrase you have never heard, perhaps the new t-shirt range you have been promoting is working. The “I have cancer!” slogan in dripping red is eye catching as is the “Vampire’s revenge” bottle logo, the cartoon dying vamp after sucking your blood is a nice touch. Though our focus group does suggest the target market of werewolves find the fabric rubs their fur the wrong way.
Which suggests we develop a strange sense of humour in the manner of our coping with the clumsiness of our C dance partner.
@Erica perhaps a sweatshirt with slogan or an umbrella and the approach of a Richard Emery sketch LOL his name is not allowed LOL
@Jimbo165 As the lead model for the advertising campaign for “You pay, will dump it” haulage, we know those good looks and charm hide the lonely Shakespearian actor wishing for the boards in the Globe. Cue one of four daughters bursting your ego bubble
Oh you were deep into Wales then! One of my aunts lived down by there but appears to have moved near another aunt in England… for cancer treatment. Sounds like that coast is gentrifying somewhat and becoming overrun with Airbnbs and holiday homes—hopefully better healthcare will also take root.
As for the conversation idea, I had in mind somebody like a cross between Graham Norton and Vince from The Mighty Boosh, but Welsh
Hope you’re having a most special day, birthday boy! How was the carvery and seeing your family? 