Life after Recovery - Emotions & Meaning-making

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So it's all taken about 9 months, but I've been given the all-clear on my tumor. I know that's really great news, and I suppose I am relieved, but I don't really *feel* anything. I am confused by my lack of reaction. I wonder if part of it is because the whole process seemed mostly out-of-my-hands and invisible - I could not see the tumor, I couldn't feel the tumor; I couldn't feel if the treatment was helping or not; most people did not know I was undergoing treatment, so I rarely spoke about it to anyone.... so I tried not to think about it too much, and mostly just focus on the things in my life that I DID have some control over - which was mostly my work . Maybe I am just in the habit of ignoring it and pretending it's not there, and now it's not. 

I understand about 'narrative styles' (Jung), and have always considered I am someone who prefers my story to be a 'Quest' style of narrative (where a challenge obstructing the forward pathway is faced and overcome in a way that leaves the character with new insights, skills, achievements, treasures or magical tools, and so the next 'pathway'/phase of life is different or 'on a higher plain' than what happened before the challenge / obstacle).  I've never been keen on the 'Restitution' narrative (where the character finds a challenge or obstacle and gets around it or past it or over it to get back onto their original path, and 'back to normal'), and it feels weird that currently I seem to be like that - my life ticking along as if nothing of significance has happened, and I can just go back to my old life and lifestyle.

I feel I should feel different, or 'changed' in some way after facing a potential death sentence; being pumped with toxic chemicals, spent weeks being 'radiated' on a daily basis by high-tech machines; being hospitalized with a possible mystery virus and a suspected heart issue; and having a phase of being so weak and unwell I couldn't sit up or stand for any length of time without feeling terrible and risking collapsing... Shouldn't that have adjusted my life-course in some way, or changed me as a person? Why don't I feel 'transformed"?

I want this to have *meant something*. I want to feel this has not been 'for nothing', that I have gained something profound from facing death. Shouldn't I feel more self-aware, more motivated, more grateful, more insightful, or something? Rather than relief I guess I feel a bit let down.

Have others experienced similar struggles? Any thoughts or ideas in how to find meaning, value or significance in the 'cancer diagnosis / treatment / recovery' journey? Any help most appreciated.

Astralita

  • Hi ,

    I think the way you’re feeling is probably something that many of us  that have faced serious illness/injury have felt, I think the whole ‘it’s changed my whole outlook on life’ is true for some, they make major changes in their lives & many people take opportunities they probably would have put on the back burner prior to diagnosis but also many just go back to living their lives. Maybe we expect this huge epiphany & the truth is we, on the most part, just get on with life.

    I had the feelings of relief post treatment but then the concerns if there was a hiccup, bleeding which I now know is the delicacy of my radiated skin, inflammation etc., & don’t get me started on the scanxiety! it was all swings & roundabouts for some time, but at times goes by the concerns lessen & honesty I’m happy to just carry on with life (I’m a little over 4 years post treatment) I do try & do things such as travel etc., rather than putting them off until ‘later’ but on the whole I’m just plodding along with what makes me happy. I try & help support others that have had a similar diagnosis through volunteering here which is something I wouldn’t have thought of prior to my diagnosis & I think I definitely appreciate the fragility of my life a bit more but this is just something that dawns on me every now & again it doesn’t sit in the forefront of my mind always. 

    Have you thought of speaking with a professional about your concerns? I believe there are cancer specific counsellors that, I should imagine, will be well versed in shedding light on quandaries such as yours & may be able to help you unpick the way that you are (or aren’t) feeling.

    I’m sorry I couldn’t be of more help but hopefully someone that’s had similar feelings may come along & share their experience.

    Nicola  

  • Hi Astralita, know how you feel and its a common reaction.  Its come up on some of the other groups and a number of us have found this useful https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

  • Thank you so much for posting this , this will help a lot of people I can imagine.

    Nicola

  • Hi Astralita, 

    Thanks for posting this, as you ring some of my chimes but I haven't been as clear and articulate as you in figuring out what's nagging me. I too am sort of a Quester. I took Inanna's Descent as my template. Served me well until I was paddling about in the Underworld without a Guide. Still not sure I'm quite back.

    But for me, reality still doesn't feel quite real, although I'm doing more of my ordinary things again. I haven't found any silver linings. Not only did I not become braver or wiser, I'm actually more flinchy, afraid of pain and self-protective.

    And really, really tired.

    I suspect that the finding of the gems in this experience unfold slowly, over time and unexpectedly. At least, I hope so. I too would be disappointed if I didn't find some growth opportunity in this awfulness. 

    Suz

  • Hi SuziQ, thankyou for the information I found it immensely helpful.

  • Thank you so much for posting that; it just articulated exactly what is going on with me.  

  • Me too.  When I went for my scans in June I passed out when the nurse was trying to put the cannula in and then was sick when I came to.  What was that all about?  I had cannulas every week for six months last year and then monthly this year, and now I have developed a phobia.  Not good!

  • Hi I completely understand that you would have hoped for some profound shift in your perspective after all you have been though. Whilst I was obviously relieved (understatement!) that I'd had the outcome hoped for, it wasn't until much later that I felt a shift in my thought processes on life in general. 9 months is still pretty early days in terms of mentally processing this traumatic life event. For me, it took probably the best part of 2 years to properly reflect and absorb all that had happened.    Fortunately, I was referred to an Oncological Psychologist and found the sessions incredibly helpful. During diagnosis and treatment I had cried only twice.  A few months later, after treatment I had my first appointment with the psychologist and when asked to talk about my diagnosis etc I just broke down in tears. It came from nowhere and was totally unexpected.  This was when I realised I hadn't 'dealt' with what had happened, I had just been on autopilot, ploughing through treatment and beyond and to be honest just having a feeling of numbness about the experience.   There was no 'epiphany' , just a slow change in how I thought about things and viewed the world.    I agree with that it would be helpful for you to discuss your feelings with an oncological  counsellor/psychologist.  Bev x

    1in1500
  • Hi Astralita, 

    I have just read your post and it resonated so much with me that I had to respond.

    I am now just about 18 months post treatment including pelvic exenteration surgery and I've had thoughts and reactions almost identical to yours.

    After a couple of panic attacks and PTSD symptoms at the 1st anniversary of my surgery, I decided I needed some help to work things through.

    I was privileged to be offered 6 sessions of counselling through Macmillan and had a counsellor who was trauma informed which proved to be really helpful.i came to understand that I had been through a trauma and had been in survival mode probably since my diagnosis. My entire focus was on dealing and getting through the scans, the chemo radiotherapy, the surgery and the recovery from all l that. Like you, I felt very detached from my emotions - except fear - and didn't know what to do with the positive news that I was cancer free after my first follow-up scan. My diagnosis came out of the blue and the whole cancer thing never felt very real (though the treatment was real enough!).

    The counselling was helpful in allowing me to think about my experience as a trauma and that my nervous system, like my body, needed time to heal. I've done lots of reading and research around trauma that has helped understand this even more.

    I too am still needing and wanting all that I've gone through to mean something and leave me  as a person, and not just my body, changed in some way. I hated the idea of just 'going back to normal', but I kind of have, in the absence of any other ideas!

    I'm hopeful that in time, I will notice changes. (maybe I already have in some small ways). The counsellor also suggested that changes might be  subtle and might become evident gradually over time.

    I'm also trying to be more 'in the moment' to help reconnect with the world rather than be stuck in the events since diagnosis which were running in my head on a permanent loop. That's getting better, thankfully.

    Sorry if this is a bit of a stream of consciousness! I was so pleased to see that others feel/felt exactly as I do that I had to respond without thinking too carefully about what I wanted to say!

    Thank you for your post and I would definitely urge you, as others have, to take time for yourself with a therapist to work this stuff out. What's happened to us is BIG!

    I wish you well.

    Osboz x

  • Wow  !!!! What an absolutely brilliant and helpful article. Thank you so very much for sharing that!

    I am exactly one year post treatment (finished 20 Aug 2021). I had a period of elation over Christmas. Felt fantastic. Was so glad to be alive etc etc. 

    Then I put back on all the weight I lost, started getting really tired again and started feeling a little panicked as the odd symptom started creeping back in. 

    The not trusting your own body anymore is a real issue. But I’m coming to terms with it. It’s hard not to imagine the worst scenario every time just because there will always be that element of fear. But it’s learning to control that and not letting it control you. 

    I’ve also learnt that although I am a year down the line… I still get tired easily. I am still convalescing. It’s easily forgotten what we have been through as we try to run far away from it. But we must be kind to ourselves. This is a journey… not a journey we choose but we can help to choose things to help us cope better. 

    Do things that make you happy, be kind to yourself. If you feel rubbish and want a day to wallow in self pity then quite frankly we probably deserve the odd wobble. We’ve been through a lot! 

    But let’s not forget… we are lucky to have had treatment, we are lucky to be alive how ever long for. No one knows how long we are blessed with… even those without life threatening diseases! 

    Perspective… we need to learn to embrace this. Accept a wobble for what it is. Just a wobble. Just like the rain and stormy clouds clear and the sun comes out…. It will of course rain again at some point but we don’t sit around moping about it and let it consume our every thought. 

    Good luck everyone on our journeys. Let’s give ourselves a pat on the back. We have been through a lot… sending everyone love and huge hugs of support Heart