Today’s learnings about getting antivirals in community setting for a cancer patient"
Following visit from family (from abroad) Monday PM, Tuesday PM (no symptoms from them and we had windows open and distanced a little) Mum had slight cough, turned to major sore throat, and VERY VERY high temp : 40.9’C. COVID Strong positive. I’m negative
Rang Cancer centre, and eConsult to GP
called AOS cancer specific 24/7 call centre who asked GP to activate antivirals
GP referred to central triage for COVID antivirals - ITS A CENTRAL SYSTEM NOW
Triage for covid = telepromted Call support going through question by question for elgibility to talk to another clinician for triage
so I Called GP surgery for further consult as temperature now 40’C, receptionist referred to a doctor in surgery more urgently
ANTIVIRALS triage by another clinician who authorised giving me a link for Paxlovid - and I was told to go through a link to Mum’s phone (GOOD THING ALL CALLS NOW TO MY PHONE!) to find a pharmacy but it takes maybe 24hrs for them to get it in the pharmacy and I have to find a pharmacy that will do that - DID I say that the central service DID NOT HAVE ME AS A CARER SO I HAD TO get mum to authorise me - 40’C and hard of hearing
GP surgery called back and said could I take mum into surgery. I said no, so GP dispatched for home visit
temperature rising more, disoriented and somewhat delirious
GP arrives, did checks and got an ambulance
4.30pm Mum in A&E,
antibiotics, steroids, Xray, lots of wheezy crackles left lung BUT doesn’t seem to be pneumonia BUT more antibiotics and steroids and fluids and checking again for pneumonia RAPID onset was bit scary
10.30pm admitted into Acute Medical Unit in single room due to COVID
Paxlovid can’t be administered on the ward because the pharmacy was shut just 30mins after entering A&E, so not available!!. It will be infused tomorrow morning at 9am, so she’s probably there 2 nights
She’s meds. The A&E Doctor told me her targeted therapy drug is not an immunosuppressant so it would be ok to have it!?!? uhhh nope I’ll pretend I accept that and not give it because it’d also risk GI issues on top of everything.
I’m sharing all this because from 10am paracetemol to 9am tomorrow a cancer patient may not get Antivirals when they are immunocompromised. AND as always Friday’s is not the day to get covid +ve!
Under these circumstances, when Mum has ANY temperature with positive Covid test, I’ll probably dial 999 to get her checked and the antivirals ASAP from in-hospital before noon. The community system is not working.I counted 4 triages with no antivirals in hand before symptoms escalated. She was already 39.1’C at midday.
I hope this information helps someone else I would hope that the system of a minimum 4 triages changes or is accelerated somehow for cancer patients. From 1st call at 10am we were in A&E at 4.30pm due to escalated temp and she’s admitted to a ward still no antivirals but having antibiotics and steroids because she has neutrophil sepsis. ie infection and her immune system is not ‘working’
The antivirals central computer system is separate from GP so I HAD to get Mun to authorise them talking to me when she had a temperature of 40.9’C and couldn’t hear easily.
I can’t put what I want to say on here as there are too many four-letter words.
Talk about a broken system.
This is one of my great fears - that G will get covid and he will not be able to fight it - prostate cancer is not as bad as your Mum, but on top of that I am Immunocompromised so what happens then? I run severe risk just caring for him in that situation. When G was admitted to hospital he had or picked up within 48 hours E-Coli as well as being diagnosed with pneumonia.
@Chris_22081 and @Victoria_1806 . Heaven knows you are both two of the most articulate and caring people I know, and if YOU cannot get the system to work, or at least function on a mega basic level in an emergency god help the rest of us.
@Victoria_1806 Sending cyber hugs. But if action had been taken initially surely it would have stopped the traumatic visit to A and E and your mother being kept in. So hard on both you and your mother and I agree system is seriously broken and it is left to the Carer to try and pick up the pieces to protect the person they are caring for.
I’m no longer concerned about the NHS. There’s not much of it left. If you heard any of Chris Whitty’s testimony to the Covid Inquiry, be afraid. Until governments wake up to some difficult facts, things are only going to get worse.
@Victoria_1806 Sending hugs and positive thoughts for you and your mum.
@Victoria_1806, what a nightmare… thank goodness you are there to advocate for your Mum. Weekends are definitely not a good time to get ill, especially where a visit to A&E is concerned. You would think the pharmacy in a hospital would be open 24/7 wouldn’t you…
@Chris_22081, you are right, the system is definitely broken. The fact that G contracted E-Coli whilst in hospital says it all really doesn’t it… hospital is where people go to get better, not come out with more than they went in with!
Thanks everyone, I had a good howling cry - perhaps more potent because I seldom get a chance to really howl, but with no one else in the house I raged, sobbed and howled with music playing loudly whilst I changed Mum’s bed - obvs needed cleaning after paramedics & covid…
I recommend a good howl out loud to anyone! Esp if you have as much frustration as I did…
I’ve had 30mins on the treadmill this morning which, as you know, helps me in terms somatic mind to body moving emotions out…NOT running though not risking it with limited sleep! BUT was good
AGAIN SO BLESSED that I got a jab last week
Anyone of you knows its impossible to just go to sleep, so lovely @Chris_22081 and I texted - seems it’s possible to sob and type at the same time…handy trick!
I cleared the fridge after the bed, and sorted washing, and what to take today…
STILL no idea if Mum has antivirals or not BUT as we always say, she is at least in the best place to be monitored and she’s not getting covid -ve overnight, so her lungs will be checked for pneumonia as she was rapid onset wheezy yesterday
Got to go update people now BUT THANK YOU ALL, it’s SO good to know you’re here to vent to and understand
Awww @Victoria_1806 I thought that was our little secret. They’ll all be talking about us now!!
I just hope it helped a bit.
Wow you have been a busy girl. Mind you - I am the same, when G was blue lighted in 5 or 6 weeks ago, I got stuck in - strip the bed, remake it, washing on, bedroom cleaned, bathroom cleaned, food prepared… anything to distract myself. Then a good howl when out in the fields with Buster where anyone hearing would just think it was some poor wild animal in pain!!
Looking round here now I need that much get-up-and-go to tidy and clear up as it looks like a bomb-site again and was clean and tidy just two days ago.
Seems a trip to hospital is fast-tracking Mum’s learning of how to use her new phone…she’s texting me and her friends despite VERY sore throat, not being able to hear the nurses very well…YAY
xoxo big hugs @Chris_22081 awww everyone’s already talking about us those loud howlers sometimes crying laughing crying howling
I’ll get more sleep tonight - but definitely glad I got on the treadmill this morning, my head was fit to burst ffffd up still had a few sob grunt howls to my aunt this morning raging over the system. I am going to complain and inform the cancer unit.
On GOOD news OUR AMAZING ONCOLOGIST replied to my email - similar to my post here, and concurred with her NOT having her targeted therapy cancer pills as they may interact with antibiotics and antivirals…good thing I didin’t give it to her then!!
HOW COOL is it that I can email him and he replies! this was years in the making and believe me I AM SOOOOOOO grateful
SO SO SO tired - not going in tonight - aligned with mum, she is SO opposite to how dad was in hospital…at 6pm today she got antivirals and new bloods done. I’m hoping that’s pre and post antivirals stats. Nurse confirmed target isn’t to get to covid -ve but to better stats ALWAYS GOOD to ask what the main goal of treatment is e.g .1st bowel movement post surgery
I’m hitting brick wall now…main priority debriefs done and updates…rest can wait @selinakylie Rose in hand - go get Chateau Marot bordeaux rosé from M&S £9 So worth it - better than any l’oreal ad!
laundry from hospital in washer
Need to get primed in case they ‘suggest’ discharge tomorrow - want full 24hrs on antivrials, so priming discharge ready tomorrow and prefer Monday (most likely I think)…just had first hot meal in 48hrs…so may find head hits keyboard in a mo
There is an odd sob that escapes when I share with friends how the ambulance sirens and blue lights invoked a wave of traumatic memories, and how this whole plays on that over sensitized nerve ending
BUT shared key learnings with important friends who have cancer = TEST for covid, monitor temp in morning if rising dial 999 forget 24hr Cancer advice, because hospitals in England are the ones who have existing supply. everyone else is a centralised triage system.
BEWARE…big gulp wine
@Victoria_1806 Cyber hugs Hope you enjoyed the Rose - well deserved. Please take care of yourself as what you and your poor mother have been through would be mentally draining for anyone. It really terrifies me how broken the system is.
Sitting in room with mum since 10am. Not budging. Virtual ward ‘trained’ & met nurse for that. Had OT show how use zimmer & to from toilet. Consultant at 10am listened to my concerns about pneumonia & pulmonary embolism & said will get d primer bloods done
Bloods just taken at 4pm cos everyone thought others taken
I’m squatting until i’m 100% sure no 9pm discharge because suddenly realised she can go home
Would’ve transferred to respy ward but no beds.
So real risk right now when blood results return. Obvs if embolism risk stays no issue for observation
But she’s in no fit state to advocate for herself
I’ll share all about virtual ward another time!!!
Our unpaid carer roles are even worse
@Victoria_1806 Cyber hugs. But what a dreadful way to treat the elderly. Your mother is lucky to have you as an advocate who will stay with her and fight for her to get tests and treatment carried out but what about those who do not? Stay strong and everything crossed you will be able to go home knowing she is going to stay in hospital and get the care necessary. Really hoping she does not have a pulmonary embolism as E had this with pneumonia back in 2020. Very nasty.
@Charlesh47@Chris_22081
So virtual ward means direct to nurse team, blue tooth observations temp bp o2 that WE DO at 9am, 1pm & 5pm with some sway depending on how tech & carers/patients can manage- so the team can respond…. So we are unpaid at home nurses @Michael_CarersUK
Imagine if we don’t adhere or respond- imagine if no one at home to help
@Victoria_1806 I know Leicestershire NHS were going to trial these. TBH I was horrified as you are right, it is forcing us to be unpaid and untrained nurses. Plus there was NO night cover. So if anything went wrong, we would still have to call 111 or 999. Frankly I think given the amount of tax I and my husband have paid over the years it is a total disgrace. Can we refuse?
Actually the nurse team does direct readmission to hospital when see observations monitored by us. Direct number to call. I reverified that there is NOT 6 triages like Friday… but the burden is on us to flag AND to be tech ok if shown
Still …imagine all what ifs
Everyone get jabbed asap. In hospital cases rising esp dementia patients shouting next door
Im fighting the infection but temp 38’C right now
those loud howlers 
