Intrusive Thoughts - PTSD?

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I'm two years NED from my last diagnosis, and nearly 11 years out from my first diagnosis (I've had three in total). Recently I keep having a kind of daydream where I'm at the end of my life and my partner is taking care of me at home. I don't know why I keep thinking about this but it's happened a few times this week. I have no significant reason to be worried that anything is even wrong right now. Does anyone else have intrusive thoughts/daydreams like this? Over the years I've also had nightmares, intrusive memories, and of course general fear of recurrence and anxiety. I've wondered off and on if I have some form of PTSD and these new thoughts about being terminal at home have made me wonder again. Has anyone had a cancer-related PTSD diagnosis or similar kinds of unwelcome thoughts? Who would I talk to about this?

  • Hi  and welcome to this little corner of the community. PTSD is often highlighted with regards to post treatment challenges and can be hard to navigate and even more so during COVID times.

    I have been on my blood cancer journey for over 21 years now (hit my name to see my story). I am now over 5 years out from my last treatment and 4 years in remission and doing great. I have to highlight that back in 1999 I was told “Mike, I am sorry to tell you that this type of blood cancer is incurable, yes treatable, but you will never be in remission”...... so I am living the dream.

    I will always say that when we get our cancer diagnosis we are also given an invisible rucksack, we then spend years filling the rucksack with all the ‘stuff’ that cancer can bring..... but we never empty it and this results in various problems.

    Has your doctor suggested some professional support Talking to people face to face can indeed help a lot but during these times it’s not that available but do check to see if you have any Local Macmillan Support in your area or a Maggie’s Centre as these folks are amazing and a lot of these services have moved onto online video one on one support and support groups.

    I know that Maggie’s are back doing in person support. I had a few things in my rucksack about 4 years back (survivors guilt) and I reached out to Maggie’s and then we’re great, I also did one of their course that helped me empty the rucksack and bin a number of things that I had been procrastinating in dealing with.

    Also check this link to the Macmillan Buddies Telephone Service as talking with someone who is walking the same path as you can help a lot.

    Happy to talk more.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi . I had cancer related PTSD, following breast cancer 11 years ago, and bowel cancer 4 years ago with complications. Great anxiety,intrusive thoughts, triggers having to attend hospital mainly, but other things too. I found EMDR extremely helpful.  I last had treatment in September, and was OK , but I think it might be creeping back and I may need a top up. I had most of my sessions online because of COVID, and found it very effective. Good luck.

    Onwards and flatwards (don't do hills) and keep walking if you can!

  • Before cancer I had intrusive thoughts, all the time! I had one session of EMDR, it was instant relief! Post cancer, I have had some different intrusive thoughts and have been learning Mindfulness. I can't express just how helpful this has been to me post cancer, surgery, pain and in general with stress, anxiety and depression. I am still learning but I have noticed such a difference in the the way I react to my own thoughts. Worth a try? Best wishes xx

  • FormerMember
    FormerMember in reply to Thehighlander

    Hello, I'm brand new to this forum but so glad to have found it - feels like what I've been looking for for years! I had cancer as a child, 20 years ago now, and it feels a bit daft to say but I think I still have intrusive thoughts and anxieties as a result of it. It's reassuring to hear that others have found EMDR helpful - I'll investigate it - and I love the rucksack analogy! Mine suddenly gets heavy at unexpected moments. Thanks all for sharing your experiences. X

  • Hi  and welcome to our corner where we help each other get through life and do our best not to let our cancer journey define us and as you will see - the post cancer treatment ‘left overs’ can actually define us to the point we are not ‘free’ to live.

    As always you can hit our community names to see our stories (where members have put something in) as this often can be an encouragement to read that you are not the only one who have had to ‘work’ at developing a post treatment life.

    Happy to talk more ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Yes, this sounds like it is PTSD for sure. Is there a therapist you can talk to about this? It's hard to find the right 'match' but if you're able to, I hear that it makes all the difference. [I'm still on the hunt myself]. The anxiety thought spirals are the worst for me, and the invasive anxiety dowsed experiences are not only around my physical health but the spiral branches out into other aspects of my life as well. It goes like this: I find myself incredibly fixated on one topic of worry and then I switch to the next, and the next, etc. and then make a big loop back to the original worry, and it just keeps going. I hope to find relief, and I hope the same for you too.