Looking back over the past few years, I have begun to realise how many symptoms of Polycythaemia vera (PV) I was displaying, but they just seemed to fall under different headings of my health and growing older(Just turned 60 this year). Polycythaemia vera (PV) bingo cards please NHS.
Only diagnosed after my bloods were picked up in A&E after an RTC. Had one count over 200 but being a doctors strike, you get sent home the next day and you start to the wait for a specialist… you all know the drill.
But back to my question, looking back, how much did you suffer from anxiety, depression and mental health complications before your diagnosis?
As my dad said recently, it’s your blood and has an all access pass to all over your body, brain included, what did you expect?
After two quick medieval medical procedures(bring back leeches) and here is some low dose aspirin and see you in December when the impact of the crash will have stopped confusing the result, I am at awaiting stage of what comes next.
Yet thanks to a friend, she asked if I knew that Polycythaemia vera (PV) could affect your mental health and would it help me to understand choices I had made or acted upon in the past few years.
Like many, getting the diagnosis was the “haha!” moment when everything fell into place and now trying to come to terms with it and learning to live with it.
Hi @clickinhistory when I was diagnosed 19 yrs ago and the mental health impact was just not considered.
I have another blood cancer and the shock and anxiety was immense.
In hindsight I think my thoughts and emotions have been on high alert ever since and I can burst into tears at the least thing.
I can also play back visually in my mind the day of my diagnosis, when I cannot remember what I had for dinner yesterday.
Personally I have found that counselling helped me.
It also helps me to type things on our forum, it is the one place that I can be really honest and not feel that I am going mad.
Give yourself loads of time to come to terms and be ever so kind to yourself.
The Blood Cancer UK support line is there for you if you would like to talk to someone on 0808 2080 888.
Hi Erica thanks for responding.
Part of this has been realising how far back the symptoms had started and how easily they are dismissed as something else.
It was the friend saying “you have not been really you for years” and explaining how I was always looking on the darker side of events, stressed easily and mood swings and had become withdrawn.
Now I know I had some major life issues going on, but I was always a bounce back and dig in guy, face things etc, this Polycythaemia vera (PV) took part of me away it seems.
The symptoms also have played with my long term relationship, dealing with a divorce now too on top of the after effects of the crash, oh and Polycythaemia vera (PV). wow this thing just keeps on giving lol.
Hence the question, did you realise how much your mental health had altered before you started the journey to explanations?
No, you are right I did not have any changes in me before my diagnosis as I was diagnosed a short time after a needed gynae op and when I did not recover well.
Hindsight is an interesting thing to join up the dots. and your friend saying that ‘you have not been really you for years’ very interesting.
I hope others can help more
@clickinhistory I have Polycythaemia vera (PV) and likely have had it for many years. Fortunately for me, I didn’t experience symptoms, hence the shock at the diagnosis. Being involved in a road traffic accident will certainly have affected you mentally too.
I hope you find some comfort.
@PollyVera thanks for replying, guess that would come as a shock to you.
The crash has been, despite the odd flash back and constant pain, easier to deal with as I was given a trauma therapist as part of a new study. This is now branching out into dealing with the cancer and it’s symptoms in our discussions.
It has made me very aware of if I feel anything, pain wise, is it the cancer or is it the crash or both, the same can be said of learning to live with the mental issues, is it stress from the separation, work issues(self employed), the fall out insurance wise from the crash, life in general and is it being coloured by the Polycythaemia vera (PV).
It is an artist might say, a life’s work in progress at the moment.
Hey there @clickinhistory, interesting line of thinking! I’ve been mulling over your questions a bit as I, too, lived with depression and anxiety prior to being diagnosed with Polycythaemia vera (PV). I survived a heart attack caused by a clot many years ago, which makes me wonder now if I already had Polycythaemia vera (PV) or signs of it all those years ago.
Although I have no doubt that knowing we have a terrifying blood cancer like Polycythaemia vera (PV) can affect our emotions, I don’t think depression and anxiety alone could mutate our cells to such a degree that we developed blood disorders.
After my Polycythaemia vera (PV) diagnosis I felt intense grief for my pre-cancerous self and took my time to process what came up for me and go through stages of loss, and thankfully it’s fading. I wonder if you are feeling a kind of grief? It would make sense, seeing as our lives change so suddenly upon diagnosis. For me it was like the end of my life from before diagnosis.
In my case, I’ve come to know that the anxiety and depression I’ve experienced since childhood were symptoms of my more all-encompassing PTSD, caused by traumatic stressors in my earlier life. I’ve practiced moderating the depressive and anxious bouts for years, but since my diagnosis of PTSD I’ve come to see them as sort of helpful unconscious signs of my greater mental health state. The PTSD is the mental illness I am treating and they are symptoms that can wax and wane. When I notice anxious thinking taking over I use it as guidance for what to work on there and then, in the self-care I need, and what to take to personal therapy.
However, they’re my anecdotal experiences. Perhaps you had Polycythaemia vera (PV) symptoms all along before diagnosis like you say. In which case, depression and anxiety could have been manifestations of what was going on somatically, unbeknownst to you consciously. Maybe you sensed that your body was indicating something greater was not right, like the increased blood production and other proliferative symptoms of Polycythaemia vera (PV)?
In my PTSD treatment I’ve come to appreciate how my body was telling me all along about the stress I was carrying around, which came out as panic attacks and social anxiety. Learning where I feel symptoms of trauma in my body in somatic therapy and then gradually storing away traumatic memories with EMDR has helped lessen the severity of the anxiety and depression, and I haven’t had a panic attack in ages. I really hope your trauma therapy is helping undo anything caused by that RTC—you’re very fortunate to be offered such specialist therapy.
I really empathise with you in regards to Polycythaemia vera (PV) contributing to escalated depression and anxiety. It’s anxiety-provoking! Living with a blood disorder that can randomly cause us great harm is naturally worrying, so I’m trying to embrace that discomfort as normal. I don’t want to spend so much time anxiously awaiting harm to potentially occur! It may never occur—do I want to spend all this time anxious about something that may never happen? That’s the epitome of anxiety, and I’ve done enough of that, thank you very much!
So I would say, try not to think of Polycythaemia vera (PV) as the cause of your difficult emotions. Think of the emotions as guidance from your self, your psyche, of what your unconscious could be telling you to think about or try to work through. That stuff would be great to take to trauma therapy, or reflect on in art-making, or other forms of expression.
I sometimes take my worries out on hikes and mull them over while I scramble about and check my map and sometimes by the end of the hike the worries seem less of a big deal. At least the fresh air has helped take my mind off it all for a while and knackered me out enough to sleep better…
Thinking of you, @clickinhistory.
Hi @Duncan @clickinhistory @PollyVera I think you have raised another good issue @Duncan and that is the bereavement and losses we feel for the life we had and also the losses for the future.
But I realise they are post diagnosis.
@Duncan, thanks for that very honest reply.
I agree about depression or anxiety could actually cause the Polycythaemia vera (PV), but years ago, a professor I once knew, did suggest the medical world was behind in it’s thinking about the effects that issues that affect our mental health could cause immunity issues, leaving our bodies more open to viruses and infections with reduced capacity to deal with them.
Given no one knows what actually causes our JAK2 to mutate, perhaps this could be an interesting future study?
As I stated, this is a hindsight question and a joining the dots exercise in symptoms, including the depression and anxiety.
With it being a rare cancer, tend to find most threads are about other cancers, even though there is a universality about our reposes, so more targeted information is harder to find.
The specialist in my case just shrugged and said the car crash had probably saved my life as I was a walking heart attack waiting to happen. The Trauma Therapist is part of a new study on the effects of trauma after a major accident or illness that got you into A&E and how it affects your return to work and normal life.
The diagnosis was a relief in many ways as it meant I was not getting old fast or had a brain issue or several other options, I had a cancer that was rampaging through my body having a fine old time at my expense and changing clothes each time I went to the doctors. Like you said, I knew something was not right and nothing added up.
Like you I find walking helps ( it was part of my accident recovery to build my lungs and heart again), the fatigue before stopped me doing as much, part of my relationship issues were we stopped doing these walks as much as I just lost interest. As a photographer, that made it worse. Frustrated my partner as just lost interest or made excuses not to do the things we really enjoyed together.
Looking at doing tai chi again as a way of trying to balance the waves, a friend’s family member described it as a “living life as normal as you can and ignore the sword above you as much as you can, but know when to pause if it starts wobbling”
I have met many with PTSD and it amazes me on the strides people are making with it, naming it being the number one step.
Learning to have that two way dialogue with your own body is a journey that I feel needs to be taught in schools.
Grief for the life we lose is an interesting concept with the cancer leaving us looking “mostly normal”. People find it harder to understand the path of this cancer.
Fine art photography and writing are my releases, the camera is the excuse to be out lol.
Good luck on your journey and for your many honest posts.
My dad survived dying on the surgeons table with prostate cancer and he said that dealing with the body is the easy part, it is the heart and mind that is hard.
@Erica they are all just chapters of the one book, prologue and the middle bit we are still writing with one eye on the epilogue
So true what that professor you mentioned said about our mental health affecting our physical health. I tend to see it all holistically, like our minds and bodies are working together, often unbeknownst to our conscious selves! Our being alive is such a juggle of unconscious processes and physical reactions that we can barely even be aware of… until they go askew.
I’m sorry to hear about your relationship difficulties. I can really empathise with how all the stuff we have to contend with personally can affect our nearest and dearest too. Kind of like a secondary trauma for some partners, I would think, with them supporting us through these horrors whilst they pick up on our difficulties vicariously. There’s relationship therapy to help at times like these, if it’s accessible where you are.
Neuroscience is making some great leaps and bounds in finding links between developmental and intergenerational trauma affecting our genes, like the types of horrific trauma suffered by folks who survived the Holocaust that can damage their genes and pass onto their children and children of children. Thankfully there are medical experts out there like Bessel van der Kolk who continue to study trauma and how it affects us in so many invisible and yet damaging ways.
Love your analogy of our lives being like books that we are still writing! Your photography could also a great benefit now as art-making is super helpful at expressing our emotions, as I’m sure you know. As a psychotherapist with a speciality in art psychotherapy I would suggest taking your photos without an end goal in mind—you don’t need to document your experiences with a view to exhibiting or selling, but perhaps just to see what you capture through your viewfinder with no expectations.
I’ve been finding in my own photography that I’m seeking different kinds of subjects, less isolated scenes, more colour within my framing. It’s día de los muertos where I am so I’m hoping to have the energy to go and snap all sorts of amazingly colourful altars and other Mexican ways of commemorating lost loved ones! Usually I’d avoid people in my photography but I’m feeling more drawn to these sorts of spaces these days. Would love to see some of your art @clickinhistory , but no pressure!
@Duncan been following the trauma gene theory, whole new meaning to carrying the sins of our fathers or we learn to love or hate in the milk of our mothers.
I just take images of moments and a story to tell, a bit like your work, you seek the story and help with the editing
Beginning of the year, just after separating
After the crash and cancer diagnosis
known as a bw photographer, inspired by the meeting of light and shadow and vintage processes.
Looking forward to seeing the colour of the night pictures
Wow @clickinhistory what poignant photos, I think that black and white such a strong medium, thanks so much for sharing them with us, I feel honoured.
Look after yourself
Aww so beautiful, @clickinhistory! Thank you for sharing. Imagine if there was more art on this forum. Love the sepia tones and chiaroscuro
Oh @Duncan I love this photo again what a contrast!!
Look after yourself
@Erica thank you, working off a laptop rather than my office desktop, so never sure what they will look like on other viewing mediums.
Each image is a story and the more you look, the bigger the story becomes
@Duncan reminds me of some the people I have served in pubs over the years, trying to remember how they got to this stage
@Duncan one to suggest to the powers that be on the website, art therapy sharing
Nice idea about art therapy being part of this forum but [puts psychotherapist hat on briefly] I’m not sure how typical client/therapist boundaries could be safely maintained on here—I wouldn’t want to risk facilitating someone’s therapy in such a public online space, and certainly not after sharing so much about myself! Besides, that’s what the NHS should be good at offering but no longer is
However, as a space for sharing our feelings and tips with fellow survivors I’d say this forum is great as it is. Definitely could do with more art and music on here though, like the Friday jukebox and folks sharing our images!