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advice for my mum

4 years 10 months ago #47460 by sprog
Hi Diane,

So sorry for the late reply. I got in touch with Mcmillan and spoke to a nurse who advised me to get my mum to speak to her stoma nurse. I told her and she phoned them and saw her top stoma nurse 2 days later and it was lucky, as my mum nearly passed out when she got there!

Turns out, with a lot of tests, my mum has got a particularly nasty bug/bacteria in her urinary tract and ALL the antibiotics she has been given have been useless, as they don't get rid of this particular bug!

Mums white cells were very high, any higher and she would have been taken to the hospital where she had her bladder removed, by ambulance, but wasn't quite bad enough, but still bad.

Shes had a whole course of antibiotics, but still feels ill and Ive told her to go back to the stoma nurse to see if the bacteria is still there.

Thank you soooo much for your advice it has been very helpful;)

Mums stoma nurse said this could keep happening, hope not, but if it does, I hope its not too often!

Thanks again Diane.

best wishes sharon

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4 years 11 months ago #47397 by Flamenco.
Hi Sharon,
I am not in the UK, but my dad was. I guess my dad probably had a referral from the hospital. I think you can contact them through their website, and find out if they can assist you, or maybe put you in touch with a local support group where they may be someone who has had the same issues as mum.
All the best,
Diane

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4 years 11 months ago #47390 by sprog
Hi Diane,

Thank you so much for your post.

This is one thing I am livid about because a Mcmillan nurse is supposed to be referred to you by your GP and my mums didn't bother because she felt she didn't need one, as she had me and she thought she could cope without one! Who the hell is she to decide that?!

I tried to get some attendance allowance and asked Mcmillan to help with the forms, they weren't very helpful and my mum was refused! I wrote a letter of disgust and got my mum some AA on my own! I looked after my mum from start to finish, even injected her everyday in the stomach with blood thinners, no help from no one, I had no support, did it all on my own and Im ill myself.

I take it you are in the UK, where abouts are you? Apparantly, my mums gp has referred her back to her Urologist, who told my mum she doesn't empty her bag often enough and she gets backflow, what a load of rubbish!

I did think of getting my mum referred to a Urologist at University College Hospital in London, as they are a Mcmillan hospital and were just private patients, but now see nhs too.

I don't know what Mcmillan can do for my mum as shes post op, do you think they might know what the problem can be, or are they just there to support?

Thanks again for your message Diane.

best wishes sharon

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4 years 11 months ago #47389 by Flamenco.
Hi Sharon,
I posted a reply to you yesterday, but it seems to have disappeared - Have you had any contact with a MacMillan nurse? We were put in touch with one following my dad·s admission to hospital with a cáncer related problema, and our nurse was involved in my dad·s care from then onwards. As they are trained specifically in dealing with problems facing cáncer patients and their carers, they actually have more experience in these matters than the average GP. If you haven·t already done so, I would recommend your contacting them- they were a godsend to Dad and us and helped in many ways.
Diane

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4 years 11 months ago #47381 by sprog
thanks again for your reply, I really appreciate it.

I will try my hardest to get my mum to drink more, but I think there is far more going on and will try to get her to eat better, though she is hard to negotiate;)

Thankyou also for your recipe, you are very thoughtful.

best wishes sharon

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4 years 11 months ago #47380 by Cynthia
Sharon, I really hate to repeat myself but upping her liquids could be one of the most important things your Mom could do. Any liquid is good water the best of course but if you can get it down her and it is liquid it is better than nothing. I know if money is tight it can be hard to eat well. Broths and soups can be very nutritional and are a good source of liquids and once made put in containers and frozen for future use. If you do a little searching you can find many good recipes. Here is one for vegetable broth using the vegetable scraps saved from making other meals.

http://www.poorgirleatswell.com/2011/03/guest-post-scrappy-veggie-stock.html

Wishing you and your Mum well.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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