Waiting (sorry moan alert)

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Hi All

After chasing for a week I finally got my lung scan results and I still have some clots in my lungs 3 months after they were diagnosed despite my blood thinners. Once they have gone I can have VATS excision of one of my lung nodules so now I have to wait for a rescan in another 3 months and try again, otherwise they will go for cyberknife or ablation but the team feel I will get the best results (and pathology) from surgery.

One of the many things that I hate about cancer is the constant waiting. I am an impatient sort of person and all I do is wait for tests, treatment, scans, chemo, operations and referrals. I know that it beats the alternative and I am lucky to have treatment but why can't it ever go smoothly for once. I get all psyched up for ops etc and then more delays. I don't have endless time left to me and I am damned well waiting yet again. I just want to rage at someone/something and yet there is no one. I wonder if you can rent a padded soundproof room by the hour so I can let some of it out.

After they have done this lung, they intend to do a much bigger open op on the other one which currently has five more nodules (does the fun never end?) Obviously in the mean time the cancer slowly grows and spreads. I just hope I remain operable. Anyway that is it folks, some gratuitous winging because I don't want to inflict it on the family.

And to all you others out there waiting as well, for whatever - good luck. If anything drove me to drink, it would be this awful WAITING.

  • Hi ,

    I'm sorry to hear about your delays.  I hate it when things are delayed especially if they have been arranged in sequence and changing one thing means changing everything else.

    I can't offer any suggestions on renting a padded room but there is a place on this site called "The Room" specifically for people to rant.  Yo can smash imaginary bottles, break imaginary furniture, write on the imaginary walls and rant and curse and the next day the room is magically cleaned and pristine again.  It is not that busy at the moment but like lots of groups once a couple of people start posting regularly lots of other people join in.  If you want to have a look I have put a link here.  

    I hope that you are feeling a bit better for your rant.

    All the best,

    Gragon xx

  • FormerMember
    FormerMember

    Dear NN

    This BigC is the gift that just keeps on giving... and giving... and then giving a little more!!!

    Very sorry to hear about your delays.

    The waiting for results is insufferable I agree (just been thru 6 month scans & tests...) but unfortunately this is how I live what's left of my life now...

    So, whenever you feel the need, please rant away because that also puts into words what many of us are feeling but often unable to express as we progress into our individual journeys, but it can also be strangely comforting to know that we are not alone... (as odd as that sounds)

    Good luck with your own journey...

    Stay Strong

    SiT

  • Hi Nicky Nosher, I think of having incurable cancer is like being on a roller coaster! Sometimes it levels off and things settle for a bit and then before you know it, someone has flicked a switch and off it goes again, uphills, sharp turns, big dips, you know what I mean! So my strategy is to really enjoy the slow bits and not to worry about what's ahead. Worry won't make it any better or worse so why put yourself through that! There is an app called Headspace you could take a look at. I have been doing Tai Chi Chuan and a Breathing technique for Meditation for almost forty years now so I can usually take things in my stride. If I'm waiting for results etc, I keep my mind busy so I haven't got time to think about it! I am not saying it's easy but if you put the effort into it, you can reap the rewards! Think of all the energy you are wasting! OR Alternatively pay a visit to The Room!!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • FormerMember
    FormerMember

    Hi you've hit the nail on the head, sometimes it feels like I'm living under this constant threat that never fully goes away. 

    Even the best results come with a 'but' nothing ever goes smoothly. Like you I feel very lucky to be having treatment, every day is a bonus, but on a bad day it feels like death by a thousand cuts. The stakes are very high for us and that makes the waiting especially hard.

    It doesn't sound like gratuitous winging, just an honest description of what life is like under the shadow of a complex and progressive disease.

    I'm so sorry you have to wait another 3 months and hope you'll find ways of managing the stress that goes with that, something Daloni talked about a lot.

    xx

  • FormerMember
    FormerMember

    Waiting is THE worst!  I hope your ops go well, sadly I am inoperable as my pesky lung tumour is too close to gullet and now pressing on my windpipe

    Take care x

  • Thank you everyone, I know that I am never alone on here and just having responses like this makes it easier. I woke up the next day feeling a lot better but it is the crushing sense of ant-climax when you psyche yourself up for something that is also difficult. I am glad that I am operable but I have been told that even if they get this lot of nodules, more will appear but it buys me time so I am happy with that. .I didn't know about "The Room" but I will have a look. The headspace app is interesting but I don't have a smartphone. I am a bit of a luddite but I expect I shall be driven to get one if my health deteriorates and I am limited to 'in bed' entertainment.

    Thanks again gang, you are simply the best...(yes I can hear Tina Turner in my head too)

    A life lived in fear, is a life half lived.
    Nicky
  • FormerMember
    FormerMember in reply to anndanv

    What is The Room?? Keep reading about it

  • Hi

    It is just a forum on here ( in cancer experiences) which is a place where you can post anything, a rant, a scream or whatever, and leave it there. People can reply, but it may just be a place for a cathartic swear and rage!

  • FormerMember
    FormerMember in reply to ownedbystaffies

    Hi

    Can't find it! Is it in the main MacMillan site or the online community?

  • Hi go to 'groups' at the top of this page and then pick 'experiences' and then got to page 5 (letter 'T') and it is called 'The Room' 

    A life lived in fear, is a life half lived.
    Nicky