Hi everyone

Thanks so much for replies. had another 7 litres drained just 3 weeks after the previous one. That's just over a week ago and I'm pretty sure I can feel it building up again already.

The onc says they're reluctant to put in a perm drain when you're on chemo (weekly taxol, one week off) but I'm beginning to think i need to be a little more assertive.

To b e honest I'm beginning to feel so very helpless and apathetic. I know it's not a good mental attitude. It feels like an alien has taken over my being in the sense that I have so little energy. I don't want to see people and I don't think that's a "denial" thing - just that I feel so very sensitive to others.

Anyway ladies, you are all such a source of strength and encouragement - any tips on how to get out of this rut would be very welcome indeed. It feels so self-pitying saying this, but if only I could feel of some itsy bitsy use to someone else - even just for a few minutes daily. But I need energy for that😁🤓🙏🏼😜💜

Thanks all for letting me rant and sending very much love

6 Replies

  • Are they reluctant with the drain because of the risk of infection? I thought chemo was supposed to stop the fluid build up, have they come with any ideas to make you more comfortable as really that should be their aim. Maybe time for some foot stamping for sure

    Best wishes

    LA xx

  • When I had ascites, I was reluctant for people to see me since my abdomen was huge. There's such a lot of stuff about body image and it makes it hard for women with ascites to cope. There is also the discomfort and pain which comes with it and the subsequent constant reminder of having the disease. Added to this, there's the worry that the fluid will build up again. I know there are many women on here who had ascites at diagnosis, only to not have a build up again.

    These may not be the issues you have but they are how I felt. I have a swollen abdomen for a lot of the time which I disguise with a jumper or top. I sometimes get given Hello magazines and the like and to be honest, I've stopped reading them, putting them straight in my waste paper blue bag instead because I don't want to be presented with fake, airbrushed perfection the whole time. Real people aren't like that.

    There's more to life than these useless articles which are immediately forgotten and end up at the paper bank. The most important thing to me is getting the treatment over and get some control and stability back.

    I so hope things improve for you once the chemo sorts things out.


  • I can try to understand how you feel. If you are on treatment then it is of course draining on your body, and you feel that this regime is enough and dont feel like coping with people. I have learned it is also good to get another focus besides this horrible illness. If you dont feel like meeting neighbours, could you or a family member drive you to where you could walk for a little bit or even get out and go to a local shopping centre for a look around and a cuppa? We cant let this rule our lives totally and we do have to make our lives as good for us as we can. I have done this, got into the car and got out of the house for an hour. If I couldnt drive I would get someone to take me out. It is good to get out a little if you can at all manage it.

  • Very good idea Suzuki. I went out yesterday armed with sandwiches, a flask of coffee and some binoculars. We sat for a while on a bench in the woods. X

  • Hi,

    I've just had my first real blip, didn't want to see anyone, couldn't be bothered to do anything, even getting dressed was an effort and felt really teary. I'm on weekly Pac/Carbo and when I told the nurse how low I was feeling they checked my bloods I was anemic so 2 units of blood and a few days later and I can't believe the difference it has made, I feel like I've got me back. Might be worth checking what yours is next time you have treatment.

  • Just a note about my own experience. I started having the effusions about 4 years ago and had been drained about every couple of months...Then about a year ago, it all just kind of stopped, it can do that. You can have a smaller effusion that does nothing, but they can and often do just ease up by I have to have another draining done, but it has been a year gone by so not so bad.

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