A&E and so on

[candyapplegrey]

Dear everyone,

Haven't been able to access computer for three days as have been in something they call the Emergency Assessment Unit.

On Wednesday night I was advised by AOS to go to A&E immediately, to not pass GO and not collect £200. I was there till Saturday. A pretty bad experience altogether. I was getting pain in PICC line & in chest. Plus rapid heartbeat. I wanted to see GP or go to Urgent Care. Our hospital no longer has an A&E so I had to choose between one we know how to get to in the dark which has a very bad CQC report (inadequate for urgent care) or one with a good report in the wilds of the country.

It was good in a lot of ways to begin with. They understood I was high risk so I was put elsewhere to wait and triaged quickly. They insisted in putting a cannula in my hand (took 20 minutes to draw any blood and sister could not look) even though I told them it wouldn’t work because they didn’t know if the PICC line was compromised. Blood tests done, they took me in to be seen by a doctor but were confused by my high white cell count. They thought that this indicated I had an infection. I had to explain re filgrastim pre-emptive strike that my cancer team has as its protocol. I wasn't low in white cells so now, after the injections, they are artificially high. But I don't know the numbers.

I said I couldn’t be admitted (I only went for a scan) as I had none of my sleep meds with me. I was told a doctor on the ward would sort this out. There was no doctor on the ward so after getting there at 3 a.m., . I was awake all night and the next day. Didn't see a doc till 9 a.m.

So I was still hopeful that it wasn’t an infection. I’d gone there because AOS said I would need an ultrasound and this couldn’t be done anywhere else. I felt sure there was a problem with the site of the PICC housing – I don't know what to call it as it hadn’t felt right since they’d changed it on the day I had my first chemo and it had only been in a day when they did this. I thought this was normal but experienced a huge amount of pain when it was pulled out and pushed in again.

I was in hospital for three days, on an antibiotic that's supposed to be the strongest (Tazocin). I had an infection and cellulitis and a blood clot. This was after one chemo session.

It was an assessment unit which basically meant that they would find out what was wrong with us and move us on. This also meant that people suspected of having Covid started here, were tested and moved accordingly. Hmm. Very safe environment for someone undergoing chemotherapy. They did put me in a private room. Every patient then had a named consultant and was moved to other wards. I asked the nurse (on third day) who mine was and I was down as WC which stands for Ward Cover. I saw a different doctor every day so there was no continuity of care. Generally, I hope I can say this, the women were far superior to the men. One junior doctor kept taking his mask off when he spoke to me.

On Friday, two doctors came in [edited by moderators]; they hadn’t identified reason for chest pain but they weren’t going to do any more tests even though the previous day I was told I would have a urine dip and an angiogram. They hadn’t sorted out the pain from the PICC line – they’d established it was working ok so that was it.

I was desperate to get out of the place by then. They walked outside my room, shut the door and I heard one say ‘So we’ll keep her in another night then.’ They hadn’t mentioned that to me so I quickly went out and asked and they said they needed to consult with haematology – so why didn’t they tell me this?

They’d given me a couple of clexane injections but not told me anything about it and I assumed that once I’d had these I’d be ok but now (post actual consultation), he tells me that I need another six weeks of injections! 42 more bruises! Cool.

Then I asked why I was still on antibiotics and he said because of your infection markers. I thought he meant the white cell count but then he said ‘No – your cellulitis’. No one had told me I had cellulitis. I’m not sure why hospitals leave patients in the dark like this.

I still can’t find out what the bacterial strain is. The nurses all tell me it’ll be in the notes. They go to the notes but it just has ‘undocumented’.

They said I could call them about anything the next day if I had a query but when I did, I was informed that I had to go through my GP as I had now been discharged. And yet they want me to come back for an anti-coag clinic in three weeks’ time.

The care the nurses took with hygiene when redressing the PICC was faultless but they wouldn’t take out the prongs as the chemo nurse had done and re-inserted so painfully. They said they couldn’t touch that. It wasn’t until I was home and still worrying, the PICC still very painful, that I got out of bed at 5 a.m. to say to my sister who met me on the landing: ‘He wasn’t supposed to pull the prongs out!’ This is probably why I have the pain and probably the source of the infection. I was crying out at the time but he never even said sorry, never said a word to me at all. Probably because if he engaged with me, the other staff would find out what he’d done.

I contacted hospital and they are going to ‘have a little chat with him’!

Really feel like no one is in control of anything. I think I will have to go to PALS.

Candy x

[Seasun36-uk]

Dear Candy,

What an awful experience for you.

I think this post, in it’s entirety, should be sent to PALS and to the Nurse Manager of EAU and perhaps to your Oncologist.

This is not right & these issues need to be addressed.

I hope your PICC line issues are being looked into thoroughly (take it out??).

Rooting for you,

Linda

[Mommoo65]

How frightening and frustrating for you! I was getting anxious just reading about this! Please follow up and complain verociously. You need a hug.. HUG!!! Jill

[JustKBO]

Dear Candy you have had a shocker. I hope you get that PICC sorted soon. Courage and good luck winging its way to you.

[delia2]

Hi Candy. What a confusing and frightening and frustrating experience. I hope you get to the bottom of it. Take care.💕

[Seadream]

Why does everyone in the U.K. seem to have a PICC line? I have had a “port” for over a year now and there are no problems whatsoever. When I discussed it with my oncologist he said the PICC lines were difficult to keep clean, dry and had many more issues.

I am so sorry you are having bad experiences with the people you should be able to depend on. Might I suggest that you document these experiences so that you can help these places better train their staff and doctors.

Sending strength and love... Take care!

[JustKBO in reply to Seadream]

What exactly is the difference between a PICC and Port? I’ve been told my veins are wiggly, strung out etc so I fear I will need one in the future.

[Seadream in reply to JustKBO]

Since I am not a medical professional, just a cancer patient who knows more than the average consumer, I can tell you the difference as I know it but recommend you Google the difference or check with your doctors.

My port-a-cath Is a device that was implanted on my chest about 4 inches below my collar bone. It is a self sealing silicone device that allows Direct access to a central vein where they can draw blood or give me chemo with little risk of infection as it is not an open access. Just looks like a small bump on my chest with slight discoloration.

The pictures I see of a PICC line have a tube hanging out and need to be taped up for protection. It would (for me anyway) be a constant reminder of my condition where with the Port I don’t even know it’s there until I need it! Hope that helps.

[Everhope in reply to JustKBO]

I had chemo 6 weeks after my total radical hysterectomy. My oncologist gave me the choice of either having a Port or a PICC line for delivery of 3 months chemo. I decided I did not want any further incisions in my poor body so opted for a PICC, she agreed that would be fine as it would only be for a short time. I had no trouble whatsoever with it and fitting it was done by local anaesthetic by a radiologist, it did need flushing weekly but that was not a problem for me as live very close to hospital & my CNS did it. It meant my blood tests & chemo delivery was very easy. I had an excellent “sleeve” that kept it watertight while showering. Every case is unique & I was guided by oncologist whom I really trust.

C.