Emotional rollercoasters – the ups and downs of riding them

I’ve rode my fair share of emotional rollercoasters over the past 18 months or so since being diagnosed with terminal cancer. Before this I had led a fairly sheltered life other than the usual family arguments and someone close to me suffering with significant mental health problems. I used to see people who had self-harmed on the Medical Admissions Unit and wonder sometimes to myself what could be so bad that could lead to such self-destructive behaviour.

Since diagnosis though I’m pretty sure I have felt every emotion a human being is capable of from the lowest lows to the highest highs. I am prompted to write about this now as the past few weeks have been particularly tough. It all started after being coerced by my Oncologist to have a CT scan to investigate the worsening abdominal pain I had been suffering, in the full knowledge that given the fact I have had no treatment for an aggressive cancer for over 11 months that the likely outcome was going to be worsening disease. This would mean facing or refusing more chemotherapy.

I unusually took a friend with me to the appointment to get the results as I was so worked up about it all. They kept me stewing in the waiting room for ages just to heighten my emotional turmoil even further or so it felt and could be likened to the queuing process at a theme park. When I did eventually make it into the consultation room my Oncologist got straight to the point though. My cancer was stable on the scan. Psychologically this news felt like the drop on Oblivion at Alton Towers. A huge wave of relief was followed by an overwhelming sense of why? Why am I up every night pacing around in pain? Why despite hefty doses of opioids can I not get comfy? Why is it still stable? How I am supposed to know when it is getting worse then? When I am overwhelmed with thoughts I retreat into quiet contemplation. This vacuum was filled by DtM pontificating that my pain may be ‘medically unexplained’ and he started to give us a lecture on the concept of somatisation. I do not buy this. I fully accept this is a phenomenon which exists – the idea that psychological distress can manifest as physical symptoms – but my pain has caused my psychological distress, not the other way round.

That afternoon I was admitted semi-electively for a procedure to fix my ureteric stents. The operation is successful, uncomplicated and miraculously cures the pain I have been so distressed by over recent months. Perhaps instead of being ‘medically unexplained’ it had something to do with the two ruddy great pieces of metal that were sticking inside my ureters and now they had been removed my pain was gone. I leave hospital that night with the knowledge that my cancer is stable, that my symptoms are much better and that I can continue to live my life. Christmas, the imminent arrival of my new niece or nephew and my best friend’s wedding were not going to be marred by health stuff.

So you’d think I would have been over the moon. Not so. In fact I was on the verge of bursting into tears for a few days and remain a little on the emotionally labile side even now. I feel completely irrational about feeling this way. I should be happy. But in my mind everything was getting worse and there was a path to follow even though that path was not going to pleasant. Instead I am left hanging in limbo, a state I have existed in for months. It feels a little as though the rollercoaster has broken down with me left hanging upside down. How much longer is my reprieve going to be? I have well outlived the median survival time for my type of cancer now. This is brought home to me by three active members of the DSRCT forum dying in the past week, something I feel inexplicably guilty about.

My way to survive the rollercoaster of the past few weeks is to try and restore normality. Level headedness is usually such a prominent feature of my personality. Normality to me means returning to work after my surgery and spending time with the people I love. And try as hard as it is to think about the future. So I have set the wheels in motion with the Deanery to go back to work full-time and I have told my Oncologist I will not be coming for routine follow-up appointments anymore. I can do without spending my Monday mornings sat in a clinic waiting room for hours on end surrounded by other people with cancer. I have lots of plans for further fundraising and we of course have a ‘Bucket List’ to complete. Planning is already in progress for a ‘Staying Alive’ party in April….

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9 thoughts on “Emotional rollercoasters – the ups and downs of riding them

  1. Thank you for sharing your experiences so bravely – it must be very difficult, being a doctor yourself, to give your full trust to those caring for you. I was I intrigued by your comment about wondering what could have been so bad as to lead people to actively harm themselves. I’m sure must indeed have run through every possible emotion, top to bottom. As a person with bipolar disorder, however, so do I – and often for no reason at all. Yes, there were reasons in my childhood, highly unpleasant events. And they probably triggered a genetic tendency – my father and his father before him have suffered with mood disorders. But now? Here in my late 30s, the question I dread in response to a change in mod state is, “Why?” From my perspective, that question is completely unanswerable. If I knew “why” the switch flipped, I could do something to try and prevent it – and if only my life were so simple. I’m just coming out of a 2 1/2 year episode that’s included deep depression, elated mania and hypomania, irritability, anxiety and outright panic in dysphoric manias that have made me desperate to end my own life. If there was one thing I wish doctors outside psychiatry could understand is that – just like you, feeling you “should” be happy, but in fact feeling low and tearful – the emotions of major mood disorders are very often completely outside of how we apparently “should” be feeling. I ditched the “should” a long time ago, and am better for it. I hope you’ll be able to do the same, and just accept you feel what you feel.

    Warmest wishes,

    Charlotte

  2. Hi Kate
    You’re not alone in feeling so lost & stuck after a stable CT scan result – after 9 years living with metastatic breast cancer, and now 6 months off the continuous tablet chemo I’d had for 8½ of those years, I also had a stable CT scan result a few weeks ago. How can that be right? I’ve lost 50 chums to BC over these years.

    My mother used to call it “waiting for the other shoe to drop”; when you live in a flat with someone living upstairs who drops one shoe, you wait forever for the other one to hit the floor. As you’ve decided, it’s not a good quality of life to stay at that level of anxiety all the time! I have managed to avoid too many scans & tests until quite recently – my (ostrich-like) theory is that, no results=no problems (pain is another story, of course, and I’m glad you’ve had that sorted).

    Fortunately my oncologist (at the Christie Hospital) has known me for an unusually long time, and understands my views. I know I’m lucky, and pleased that you are too.

    Regards, Marilyn

  3. Two of of the most heartwarming human stories I have read this week. Charlotte you are truly amazing for highlighting the effects off mental health on physical health by opening yourself up.
    Dr Kate..your spots highlights to me the huge difference to perceived mental health and physical health and the reality! The reality that despite the fact we don’t fully understand why something happens some medical experts blame the brain processes on failure to manage effectively.. I have multi morbidities .. But I’m not in control of my own body. The experts are? As a patient I have been left feeling, ashamed, weak, stupid, an over worrier, emotionally torn to the point of huge self doubt for trying to explain that I cannot help this..my emotions are as out of control as a diabetic dependant on insulin..but it’s NOT me.! I’ve also been empowered, vilified, sympathised, listened to generally when there is medical evidence! It seems tome we put so much pressure on each other to be something other than just poorly, As patients we want the experts to understand us. The experts want to fix it.. End result is constant justification to appease others rather than just go with the flo. Im finding mindfulness my best friend at the moment. To realise we are more than our mind. Take off the autopilot off the brain use your five senses as best you can. Enjoy the moment rather than the past and future. Take each segment of each day..*as it is* and that each emotion has to be expressed somehow and that is perfectly ok.
    Life is yours.. No one else’s!
    Every part of my is wishing you both the best you can to achieve peace inside however that may come. You are my inspiration to be the best I can be. Xx

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  5. Thanks for this Kate, you inspired me to blog tonight. My Dad lived with bile duct cancer for just over five years, dying four weeks ago to the day. I could relate to so much you spoke of in this post, I love Marilyn’s mother’s ‘waiting for the other shoe to drop’…having lived like that as a family for so many years, the shoes are both now safely placed together, there will be no more dropping on this journey and life feels different, but not better. Not better yet anyway, but I’m sure it’ll improve. Your blog helped with that tonight so thank you and good luck with the party planning 🙂

  6. Thank you, so much Dr Kate for writing this honest and open blog about living in this state of limbo for so long and thinking you’re the one going mad because of the constant state of anxiety it leaves you in. I also have found that pain and actual stuff showing up on scans seem to keep little company, and despite diagnosis of several previous PE/DVT, I am left with severe periodic chest pain which is medically unexplained, yet when I threw a massive clot I had no symptoms until I dropped unconscious…I was beginning to think I was going nuts to top the lot…you have just nemade me feel normal for the first time in ages, Thanks so much for your candind honesty.xxxx

  7. I found you blog hugely inspiring Kate. I think it should be compulsory reading for all healthcare professionals. You make some big fundamental points about end of life care that healthcare professionals should actively reflect upon. In particular, I am always struck with the fact that patients know their own bodies and if they are articulating a symptom why do healthcare professionals sometimes choose to discount what the patient is telling them just because clinical findings say otherwise.

    I can’t wait to read about your party.

    Many thanks.

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  9. Hi Kate,

    What an inspiration you are! You are so brave, but you have no real choice in the matter, do you? Brave you must be.

    I was diagnosed with severe deafness in my early teens, over 40 years ago, and with MS around 30 years ago. I had a young toddler when the MS was diagnosed and didn’t believe I would live to see her start school. Yet here I am, still walking, my brain and speech still functioning well. I’m still hearing too – after a fashion :o) My vision is less perverse than it was 30 years ago, my bladder is a bit of nuisance but all in all I feel like the luckiest person in the world.

    I run a business, have co-founded a charity and am active in my community. I am very fortunate to have always had a very full life.

    What has sustained me since my diagnosis and has helped me to live with the uncertainty of what lies in the future, especially during the early years, is my faith in God. God for for me is the essence of the rationality and unity that underlies the cosmos. To be part of God’s rationality and unity is my purpose in life.

    I’ve told you of my experience of living with long term health conditions as I hope that this might show you how wrong doctors and their prognoses can be :o) That’s one reason why I do not support the use of the Liverpool Care Pathway for anyone but those who desperately need it and at the very end of their lives.

    I hope you confound your apparent fate too, Kate. I wish you the very best of luck.

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