Relieve Symptoms of Ascities

[Kouyate]

Hi all, so I'm now terminal but so far no major symptoms affecting me. However, for the last week or so I've been feeling bloated and uncomfortable, kind of like the aches from a bad period. I'm assuming it might be ascites and was supposed to be seeing my consultant in 3 weeks about possibly taking oestrogen to give me more time although it's not really expected to do any good 😕 and was going to mention the bloating then but that appointment has now been cancelled and I'm waiting for a new one. So in the meantime has anyone found anything that helps with this dull aching feeling please? Used to use a hot water bottle for bad periods all those years ago but wasn't sure if this would make it worse, so would love any advise please 🥰

[Lirene]

Bless you and I do hope you get some answers. Love and prayers Lx

[Kouyate in reply to Lirene]

Thankyou Lirene 🥰

[Mariej2021]

Hi Kouyate I am sorry I dont have any suggestions about the aching feeling to offer. Your post has me wondering about what support is offered at this stage of illness Have you only Consultant appointments? Do they not offer a community nurse Specialist team or palliative care team that people can consult I just feel for you trying to cope from one appointment to the next with a discomfort Is there a clinical contact you could ask about support with symptoms? Thinking of you x

[Kouyate in reply to Mariej2021]

Hi Marie, thanks for your reply. Tbh, I'm feeling pretty abandoned. During treatment my hospital were great but now it feels like okay ur dying now so off u trot! I was referred to the Royal Marsden for trials, but to cut a long story short I had to pay for a private appointment coz 8 weeks went by without the appointment and sadly no trial spaces currently available. My NHS consultant has an "open" appointment and hasn't discharged me, but I phoned his secretary to sort this cancelled appointment last week but answerphone as usual and never got a call back. So rang again yesterday, spoke to an actual person who is supposed to be ringing me back! 😏 Its all been pretty stressful really. But as you say I'm not really sure who I should be contacting, maybe my GP would be better? Anyhoo sorry for the lengthy reply 😆 x

[Lookingahead in reply to Kouyate]

So sorry to hear your news . I was on a trial at the Royal Marsden at Sutton . You often have to wait for a trial to start and to meet certain criteria . I suggest you just keep pushing . You can always request a second opinion as well . Prof Jayson at the Manchester Christie is great . I also thought I had come to the end of all treatment options but he said that there were still options open for me . I wish you well x x 🙏🙏

[Kouyate in reply to Lookingahead]

Hi Lookingahead, ye I've had all the screening done at the Marsden and I have the right criteria for the trial they have, just sadly no spaces, but they said I'm now on their waiting list, but was thinking about contacting Christie on the off chance x

[Mariej2021 in reply to Kouyate]

I was afraid you sounded very much on your own I did think there would be at least some support Did you ever have a Macmillan Specialist nurse associated with your clinical team? I have had one from diagnosis She would be my first port of call and failing that just go to GP You shouldn't be adrift trying to make sense of symptoms especially if they gave that prognosis Thinking of you x

[candyapplegrey]

Hi Kouyate,

I can't believe that they tell you you are terminal and can only propose something they don't think will work (oestrogen). I would try it anyway. Do you have a CNS line? I haven't had too much joy with that but they do call me back at least and they may be able to offer advice for your current discomfort.

It's horrible to feel abandoned. Or to feel invisible. Or to feel our suffering's invisible.

I am investigating alternative treatments as well.

Lots of love xx

[Kieran2018]

Hi kouyate,

Sending you love and hugs . Xx

[delia2]

Hi. What about palliative care or hospice? You shouldn’t be left adrift like this! Have you tried the helpline at Ovacom? I hope you find some help.