I must admit I feel quite lucky at times. I know things vary from trust to trust but we have one NHS, you’d think we would all access the same level of service and care. Exasperates me that we don’t.
I have an appointment with the oncologist tomorrow and I’m going to ask about the flushing so I’ll let you know if they have any ideas. I’m dreading the appointment to be honest as I’ve got so many questions this time, last time I skipped in like a jolly wee bunny, this time all I’m going to do is complain!
I had to push my nurse the second cycle to fill in the book they gave me cos the nurse at the first cycle literally wrote nothing.
I’m jealous of those who talk to other patients during their chemo, no-one talks to each other at mine (barely make eye contact). Closest I came to social interaction was a patient saw me having my severe reaction last time and he looked like he wanted to leave the room if he wasn’t hooked up to his iv.
Round 2 today.
Home with cake!
The comedy of errors begins again. The nurse managed to pull some of my picc line out taking off the old, sticky dressing. Ffs
They have reassured me that it’s fine and she flushed it through ok. I am less than impressed though, given the trouble they had putting the damn thing in in the first place!
Is it to leave it out this far? Surely it now less by that far inside my chest and out of position?
She was having a bad day, was rude to one of the other nurses!
I asked about my blood tests and was just told they were ok otherwise they wouldnt be giving me chemo today!
There’s very little social interaction at mine either, although I have to confess, I quite like being left to my own devices because the olanzapine makes me really sleepy and maintaining a conversation seems like too much effort
Luckyduck, I’m starting to think you may need to rethink your name! You poor thing, I would have been on the ceiling…I have intrusive thoughts about mine getting caught on something and pulled out, it really sets my teeth on edge.
On the positive side, well done for ticking number 2 off! One step closer to the final round
@Luckyduck so sorry this has happened to you, I don’t get the attitude of some nurses, it’s really not fair to take any frustrations out when on duty. I understand they are under strain but a little care and attention is all we ask. Are such incidents noted anywhere? I really wouldn’t begin to know where and who to speak to about this? Maybe phone your Oncologist’s secretary and have a word. Have you taken names and positions of the nurses? Is there a senior nurse there that you could talk to?
What’s happened to you is my worst nightmare, to think we have to keep these picc lines in until Dec/Jan and this happens so soon.
My District nurse looks about 14, last time she turned up with scrappy glitter nail varnish on and just seems sloppy and rushed. She leaves me sore and the dressings are never good. But what can I do ? Compared to the chemo suite, which were so secure and never left me sore.
It’s like we just have to grin and bear everything and I feel quite helpless.
@sharlou I tend to agree with you. I don’t mind being left and just be in my own headspace. It would be nice to have a friendly face to share it with though, if not to just smile through it together but my nurse in the chemo suite was amazing and kept popping by or sitting with me most of the time. I was the only one in our suite until right near the end. I’ve not been able to interact because there was nobody else to talk to.
Guys - is there a time through this that we are considered “safe” to go out etc ? I’ve been limiting my interactions with people but do need to get some jobs done ! I’m every 3 weeks ? Thought I read we could in the last week (ie after 14 days) but can’t find it now !
@sharlou youre not wrong! Honestly, i couldnt make this sh** up!! I tried to speak to the head honcho while i was there for a second opinion but she was in a meeting and the 2 muppet nurses buzzing round me inc the one who did it, who both said, no its fine, its ok and sent me home with it out that length. At home i spoke to a MacMillan nurse and just rang back and spoke to the head nurse, now out of her meeting who isnt happy with that either and agrees that i need to come back for an Xray tomorrow to check position.
Grrrrrr
Now trying to arrange lifts to the hospital
@janie3 she was really not in a good mood to start with. She asked another nurse to come snd help her verify my meds who was busy and so she told her to " just go away!"
Honestly, last time my male nurse told me cold capping doesnt work I’ll still lose all my hair!
Trust your instics ladies and dont be afraid to triple check if need be!
I’m so shocked, the lines get measured for a reason - so they sit in the right place! It’s really not good at all, I get accidents happen but she should have known the line needed to be checked.
I’m starting to have next treatment anxiety. This last cycle wasn’t great so I’m feeling more reluctant than ever to get hooked up to the red devil on Thursday. Glad that I’m seeing the oncologist tomorrow so we can go through things
@luckyduck1 sorry you have all this to deal with and makes me wonder how you’d have gone on if you hadnt chased up someone more senior. That is not something you need at this time. Cycle 2 for me too today… so far justctotally knackered but i didnt sleep last night… tomorrow will be a better judgement of ‘how i feel’
Hope you all have a good evening x
@sharlou
They both should have known. It was like they were just trying to cover it up snd shove it under the carpet! Lucky i pushed for a 3rd and 4th opinion.
Sorry to hear your feeling snxious. Im not looking forward to the next week- 10 days of side effects and hair coming out, on too of all these frustrating mishaps and delays eating into my trust.
@epic1
I cant find specifics about timings either but I think week 3 should surely be the safest? Last time i kept away from people for the first 10 days. Then i met someone from work and seperately my sis in law for coffee and walk. Also used supermarkets before the 10 days. If i get any bugs it has (and always probably will be) from the kids bringing it in from school!!
I’m having similar issues with the district nurses…I chose to have the district nurses come round to change dressing & flush my line as my hospital would only do it every 14 days which felt like too long, but the first one that came acted like she’d never seen a PICC before & barely cleaned it, the second one knew what he was doing but told me most of them don’t really do many PICCs & had someone different today who has left me really sore, no idea what she’s done- the more I try and look at it the more I freak myself out, plus the dressing looks shite & I can’t see it lasting the night let alone the week. Sigh.
@nellyh I did try to chase the senior nurse who I have a good rapport with as she treated me round one when my cannula leaked and arranged for me to see plastics at another hospital, then 2 days later she tried to put in my picc line and veins kept blowing, so she arranged for me to be aeen and sorted under a doctor at xray, so she knows my history well. But she was in a meeting. I rang her when i got home and she agreed with me, she wasnt happy at all, it needs an x-ray to check it’s. The staff on the chemi suite should all know the procedure fgs and the attitude and things I’ve heard some of them say to me and in front of me have been shocking. Some heads are going to roll. I will be having another chat with her asp once this is sorted.
I also thought 14 days was too long and was seen in hospital earlier as it has bled and i wasnt happy to leave it, they said it was normal ehike settling but changed it happily. I’ll stick with my 14 days at hospital for now. I arrange it for my blood test day.
I think heads shpuld definitely roll. Hopefully the head nurse is ahead of you with a bollocking. The last thing you want is someone faffing with it again. Hope you manage to get some rest tonight xx
@nicnac17 how you getting on with your acid reflux. Mine has come back especially today my throat is burning! What are you taking for yours?
I had problems with acid a couple of years ago and resolved with diet but this has seen the return of it
