"Butterflies and Whispers "

I recently read an article from an O.C lady who mentioned that she experienced the sensation of butterflies in her tummy and she believed it to be a symptom of her o.c. Well lo and behold I've had them too, not just in my tummy but they would travel , mimicking a shiver , down both arms and legs and sometimes in my neck..I used to find them so bizarre , really strange , and would occur for no reason.I did mention them to several docs but I believe they thought I was kinda cuckoo, but they are strange happenings and very hard to describe to anyone medical. Not the same as the butterflies I used to get as a lovestruck teenager mind, they did have a reason , and I'm still married to him., but kind of similar.

Then they disappeared for months ,after surgery and chemo but then appeared again in November last year , and guess what ? so has my o.c. in the shape of an enlarged lymph gland in my right groin./pelvis

To me, apart from new pains I was having ,this was an indicator that something was creeping back into my life . Scans and bloods showed recurrance . So I was wondering , apart from myself and this other lady , has anyone else experienced these weird happenings , or any other similarities that makes them think hmmmm?....

I hope everyone is having a good day , I'm having a crap one . I'm away for fourth and last blast of radiotherapy this afternoon , once I'm there I will be fine when I see how many poorly folk there is who are worse than me.


Suzie que


P.S" Butterflies and Whispers" is the title of the book I am writing of my journey through o.c xxx

11 Replies

  • Hi Suzie que,

    Full blown ascites has been more of my cue. More like 'whales and beached' than 'butterflies and whispers' LOL. Hope the radiotherapy is tolerable today and tomorrow is better for you. Loving the hair, by the way. Very chic.

    Love Lizzie


  • Hi Lizzie

    ,Yeah , it went well today ,and all finished with. Gotta wait 5/6 weeks to see if it has been a success, so fingers crossed.In the meantime I will plod on and keep myself busy with my book . You could write a book too , titled " Moby's Sick " or" When The Bloat Comes In ". Ah ,only jesting, bless you pet . It is such a crap disease this isn't it .I'm sick of talking about it and if one more person says " keep your chin up pet " or " you gotta stay positive" I'm gonna deck them !!!!

    Love Suzie Que


  • My only 'positive' comment would be to say if you had radiotherapy, from what I have been told, I understand the re-occurrence would have been single site, which I believe is the lesser of the evils. Love the idea of 'when the bloat comes in' - I wish it would. LOL.

    Nite nite.

    Love Lizzie


  • Hi Suzie Que

    I don't know if I ever mentioned my feeling of "butterflies" on here, but I definitely had a feeling like a real adrenaline rush in my stomach before I was diagnosed. I still get it a bit and (I think) am OK now, but it now relates to hot flushes which I feel after the adrenaline rush. It may be to do with the adrenal glands trying to cope with unaccustomed hormones or something like that (I'm not a medical person, this is just my instinct) Not sure if this helps. I hope that your butterflies go away with successful treatment but, although mine are more bearable now and not so much like the feeling of going over the top of a rollercoaster, I still get them a bit. By the way, I've been OK for 9 years now so they've been going on for quite a while. I guess it's just my new reality!

    Glad you've got through your radiotherapy and sending wishes and hopes for a successful outcome

    Love Wendy xx

  • Hi Susieque.

    I get a feeling like pins and needles around my abdoman, when I had my first lot of chemo the feeling became more painful then subsided, it came back with each treament and gradually got less towards end of treatment, I wondered if it was something to do with the blood supply to the tumours being cut off with each treatment, and funnily enough these feelings have come back now that mine has reocurred. The doctors seemed to think I was a bit crazy as well when I mentioned it.

    Hope your present treatment is not too unbearable and is successful

    Love George x

  • Time will tell if radiotherapy has been successful I'm playing the waiting game ,again and yes Lizzie , it is a single site , well two actually , but they are next to each other , which made it easier to zapp them at the same time.

    My " butterflies " have subsided somewhat , is that a good sign ?, too early to tell .But I do know I will continue to listen to my body ,(which we all do, no-one knows our bodies as well as we do ) and if I feel that intense flutter again I will be letting my doc know that he will need more than a net to catch it .....

    Love Susie que


  • Susieque,

    I have been following your post and would love to know where to find the article you read about the other woman who had butterfly sensations. I don't know why, but so many OC organizations use a butterfly in their logos or on merchandise, among them the NormaLeah Foundation, which I founded to rise up against ovarian cancer.

    Good luck to you and thanks.


  • Hi there . It can be found on the Ovacome January newsletter .

    Best wishes

    Suzie que xx

  • Hi, This is my first time answering a question! I was diagnosed in December 2010 with stage 3c OC. In the previous 6 months I experienced a sensation similar to a shiver in my back particularly the chest area which came and went. This disappeared following chemo and surgery but started again this Winter prior to a scan which shows reoccurrence. I also have tried to explain this to my Oncologist and G.P but was met with a puzzled look. I also think it will be one of my measures of wellbeing. Just finished the first pulse of Cisplatin and Etoposide - 3 weeks then a week off. Due again tomorrow but cell count v.low. Interestingly my shivers have almost gone!

  • yes, I too have experienced the butterflies, quite a long time before I was diagosed with OC, and as soon as I had had the op the butterflies went. I am now nearly at the end of my chemo, just 2 more to have. But I will definately be looking out for that symptom from now on!! I had mentioned it to my doctor on more than one occasion but he thought it was anxiety.

  • Hi there Iris and Cathy,I hope you are both doing ok through your chemo. I am so glad to hear that Iam not alone on these "flutterings".Like I say , I have mentioned them umpteen times to different medical people, family and friends and no-one has taken me seriously. I now believe that they are a big part of my O.C make-up and a good indicator for me.They haven't gone completely , the most I get now is across my chest and ribs . Hopefully they will disappear too as apparently radiotherapy continues to work for a couple of weeks after last session.

    I would be very interested in your progress so please keep me posted and let me know how you girls get on.

    Take care

    Suzie Que


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