My Dear Mum

Hi Zolasmummy5fea1c 

I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

I'm sorry to read how much you and your mum are struggling at the moment. If you are at all worried about her then please give her hospital team a call or, if you can't reach them, phone NHS111 for advice.

While you're waiting for replies, it would be great if you could put something about your mum's diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Sending virtual ((hugs)) to you both

Hi,

I am so sorry to read your post & pray you soon have some positive news from the scan. 

Have you looked at the AMMF charity website?  They maybe able to offer advice.  They also have a very kind & active Facebook page where you might find people who are going through something similar.

Is your Mum being treated at a specialist hospital for this cancer, if not, ask to be referred for a second opinion.

Sending love, you are doing everything you can to support your dear Mum.

Hi 

• My mum was due to have her last chemo on the 19th Sept,but the AOHS unit called my mum the day before,& asked her to come for a full assessment,(probably because I'd been bugging them for weeks with suspected Ascites). After several hrs,they checked mum in & she was kept in for 12days. Both the Cardiologist & Oncology registrar said I should have called the unit sooner,if I had concerns..I told them my daughter had called two weeks ago & was cut off after 19mins waiting on the phone,& I had called twice without an answer,(this was the 24/7 helpline), they couldn't answer me with a valid explanation! But they would admit mum & get her ct scan booked to have it much sooner than the original booking 22nd Sept. I thought great,we'll see if chemo has worked & stabilised the cancer.
• So it turned out my suspicions were correct,it was Ascites, &  there were concerns about mums heart, anemia & oedema in mums legs & ankles. She had the ct scan just 6hrs sooner than the original booking. 
• Mum was very weak & tired,barely any sleep due to the noise & 4hourly "Obs Checks" through the night. I was visiting every day & with her all day,I don't drive so I was getting the bus. 
• Good news is that the cancer has stabilised,some of it has been destroyed. Mum was discharged & has been home just over a week,& has an appointment with the Oncologist on the 17th October, to discuss scan & any further treatment other than Chemo, mum is adamant she's not having anymore.
• It has destroyed her,before the Chemo she was able to move about & walk,still had "vigour"& now she's a shadow of her former self. She wishes she'd never started Chemo now because she hasn't felt well from the day it started. Three months of feeling like crap,& having to have Paracentisis, 3days of leaking when the drain was removed,& she still has slight foecal incontinence, She was discharged with a course of steroids & insulin,which I've had to inject for her,(she is a type 2 diabetic) & testing her blood sugar 4 times a day,as well as her temperature & blood pressure.
• Luckily I live just 20 doors away from mum so I visit her 4 times a day, she just manages to do her tea & toast breakfast, & I do her lunch & dinner, then visit at 7.30 to make sure she's settled & comfortable for the night.
• Mum doesn't sleep very well, & neither do I, I am exhausted, I probly only have 3-4 hrs sleep a night, because I can't switch off.
• I have 2 older brothers they pick.up odd bits of shopping & do errands for mum,but don't visit for as long as I do,& obviously (being men)not as involved with mum's personal,medication, or domestic care as myself.

I am so sorry to read your post and all that you and your Mum are going through.  I hope tomorrow's appointment can give you a treatment plan your Mother feels she can cope with.  Have you looked at the AMMF website and their FaceBook page?   I wish I could give some words of wisdom that could help but my situation is very different.  You are a wonderful support to your Mum & doing everything possible you can do.  Take care x