Dawns Post

I have just read Dawns very sad news and all the replies that have been sent to her and her family. To be facing having to leave her teenage daughters and husband Is so cruel, my heart goes out to her and her family. I am in the same situation, but I am a lot older than Dawn (81 ) and feel so guilty, because I am not handling it very well. I have Oxygen to hand,to help with my breathing. But my biggest problem is the fluid which has built up throughout my body Does anyone else struggle with this , and if so any advice that you can give me. Would be welcome. Unfortunately my Palliative Care nurse is away on enforced Semi Retirement leave for a month, and there is no temporary replacement. Please don't suggest. GP. !!! I have n appointment on Tuesday at the local Hospiice and hoping that they will be. able to help. But Tuesday seems such a long time away. I am sending you all very big hugs and praying that one day a cure will be found for this wicked disease, and all the other Cancers, particularly ones affecting children and young people. In tears now ,, so no more to say

Gill . ( Gillie 80 ). XX.

12 Replies

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  • Hello Gillie,

    I'm so sorry to read your post and I am too crying with you.

    I had a lot of fluid in my abdomen before I started my chemo treatment.

    I looked 9 months pregnant and felt it, I couldn't breath as it was on my lungs.

    I used to go to my local hospital and for the life of me I can't remember which department it was. They were happy to drain the fluid off but we decided I'd wait for the chemo to kick in.

    I do hope you find some relief soon, I know you said you don't want to go to the GP but they can ring your local hospital to arrange this.

    Do you have a Macmillian nurse? Mine was very helpful and always came up with solutions if I was worried about anything.

    Don't know if I've helped but you need to get some comfort and feel at ease .

    Love to you Ann

  • Sending a big but gentle (((hug))) to you Gill..I am so sorry you are in this position. I don't know about the fluid build up but having had ascities I know that's really uncomfortable ... Hope you get sorted soon.. much love to you. Lyndallxx

  • HI Gillian, I am really sorry to hear you are in trouble, could you get someone to take you to a and e to get the fluid drained tomorrow? If you are in discomfort please dont wait until Tuesday. Could you even ring your oncology nurse tomorrow, I do hope you can get sorted and have relief as soon as possible

  • Hello Gillie,sounds as if you need the fluid draining if you are in pain. Try Macmillan rather than wait till Tuesday or see if the hospice will bring the appointment forward, especially if you explain your palliative care nurse is on leave. All the best! Helen

  • Gill. My mum is 80 (a birthday I didn't expect to see) and is still quite stable. Waiting for another CT scan as CA125 went up from 174 to 216. She got diagnosed at the end of 2013 and I feel so lucky to have had her around for this extra time I didn't know if I'd have. It's so sad to see so many young women with this awful disease, who have young children. I chat on this forum because of my mum but I'm so amazed by the brave ladies and it has been so useful and comforting chatting to them all. Sending you a big hug. Jane X

  • Morning Gill, it's easy for me to say however please please try not to feel guilty, this is a cruel cruel disease and women struggle through so bravely even if they and you feel you're not coping. You really are and so so well.

    I've read that A and E can help with draining the fluid and if you are not able to easily get there yourself then I'd suggest ringing an ambulance. If you don't want to do that then see if your hospice can bring your appointment forward, even one day earlier (today) will help I'm sure.

    You can also ring the nurse on this site, the freephone number is at the top of the main page,

    You are an inspiration yourself, even if you don't feel like one. Again please let that guilt go, it's not as if it's a sore finger is it?

    Let us know how you get on and hopefully relief is at hand.

    Sending you prayers, and gentle virtual hugs.

    Take care.

    Clare xx

  • Hi Gill, there's nothing anywhere that says you have to handle this well, all the previous ladies are right, don't struggle, don't be in pain unnecessarily, contact your Macmillan nurses, they can move mountains for you that other agencies can't.

    Sending big gentle hugs and lots of love too,

    Jane ❤️Xx

  • Gillie, If I lived on your continent I would jump in my car right now and come to keep you company. I pray that you are not alone. I don't know how your healthcare system works but in the US they do paracentesis to safely drain the fluid from your abdomen and another procedure to drain fluid from your lungs. It provides immediate relief, but the fluid will come back. Have they done this for you? Have you had chemo? When I started chemo the ascites went away. Please know that I wish I could be there to hold your hand. Tesla in Seattle, WA, USA

  • Hello Gillie - I really hope you've been able to take up some of the suggestions that the others have given already, but mostly I just wanted to say that this disease is of course scary and that's it perfectly acceptable to "not handle it very well". Get yourself to the hospice tomorrow (it's not long now!) and I'm positive that you'll find help with the fluid build-up, support and of course a listening ear. And a big hug from me.

    Caroline x

  • Hi Gillie,

    Agree with the ladies,don't suffer in silence,it's too long to wait and if possible I would take someone with you to A and E and say you are in pain to be drained.

    I had ascites and was drained over a 2 week period, had a full hysterectomy and 6 months chemo and so far am good. It is very uncomfortable,but you will feel so much better when it is dealt with,

    Best wishes Gilly xxx

  • Sending love and sympathy, Gilly from mid Spain on way to Portugal. have escaped!!! Am thinking of you. xxxx

  • Gill, I'm sorry I can't offer you any advice but I just wanted you to know I think you're a very brave lady & I'm sending you a little ((hug)) over the airwaves. I hope you find some relief from the fluid build up xx

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