Newly diagnosed
posted by Andrew
15 August 2023

Disjointed medical care

Last reply: 16 August 2023 19:33

Hi, I don't honestly know if I'm looking for advice, or if I'm just having a rant at the apparent shambles of care my mother has gotten since she was diagnosed with bladder cancer in the middle of March.
Synopsis:
- 14 March Tralee. diagnosed with bladder cancer

- 21 March - 12 April ULimerick Hospital
Consultation, and kept for test that they kept postponing until she said she was leaving if we they didn't do the remaining tests. (Over 3 weeks in Limerick for tests that should have been done in a week max, in my opinion).

I've forgotten many of the dates in-between, but she began chemo with the idea that she would have surgery after, if she responded well, but it didn't work out for her as she was too wrecked after the chemo even when it was reduced.

She wasn't coming around as she usually did after her final chemo treatment and as she wasn't getting treatment her weekly blood check had also stopped.

-20 July.
My dad took my mom to the GP as she was very very weak and GP left her home again don't even remember what his "diagnosis" was, if he had any. (This is the same GP that allowed 2 years of recurring UTIs go on without thinking further testing might be advisable).

- 23 July.
I called the ambulance, she wasn't eating, wouldn't take all her meds, was confused.
Turns out she had Urosepsis and was in hospital for over a week.

- 2 August.
Discharged, without a care plan 🙈 (After I explained to numerous different medical staff that there was already a fully dependent adult in the household, so it has gone from a house where two adults cared for one person to a house where one person cares for two. (There are supports in place for the previous care situation, that's not what I'm talking about).
We had to phone around and follow up to eventually get some care support ( Just once every second week, as that's what my mom wants, minimal intrusion. She is back walking around again.

- 10 August (Last Thursday)
Multidisciplinary team met with all of the updated test results.
My mom followed up today, no response from the doctors involved, while she anxiously waits the next steps. What is wrong, why do we have to keep chasing up with people to get them to do their job and at least communicate what is happening.

- 15 Aug (today)
Phoned GP to get report from recent MRI, he is on holidays.

Mom felt like she might be getting another UTI so saw one of the other GPs at her practice, was given 3 days of antibiotics, and a print out of the MRI.

Why are all the communications so disjointed?
How long should it take for somebody from the Multi Disciplinary Team to get back to us and tell us what the next plan is?

The above doesn't include everything, but it's all I have the energy to write at the moment.

There have been some great care staff in the hospitals, but they are all over worked.

This state is a joke.

2 comments

Comments

commented by Cancer Nurse
16 August 2023

16 August 2023 09:47

Dear Andrew

Thank you for posting on our online community. I am so sorry to hear of the very difficult time your Mom, Dad and you too have been going through. It must be so hard and worrying for you all.

We are all cancer nurses here on our support line. We would very much like to hear from you or your parents. Our phone number is 1800 200 700. We are here Mon-Fri 9-5pm.

Andrew we also have cancer nurses in our Daffodil centre in Limerick University Hospital. Their phone number is 061 585866. They too would like to provide advice, information and support so please do get in touch.

Kind regards

Cancer Nurse

commented by Andrew
16 August 2023

16 August 2023 19:33

Thanks for your reply and information.

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