*Tamoxigang Christmas Party* - 45

[Tiny100]

Morning All!

We're nearly in December, so let's get the festivities started.

[adds mince pies to the trolley]

So yesterday was a BAD day! Thank goodness mum and dad arrived to lift my mood!

Went to have PICC line flushed at the hospital. Had a nurse who clearly didn't have a clue what she was doing. At one point I was holding the line so she couldn't pull it out!! I said be careful your pulling it out and she then went to push the line back in!! Idiot!!

Then it came to flushing the line, at which point another nurse was calling her, so clearly I wasn't her priority! She flushed the line without drawing blood?! Therefore she wouldn't have a clue IF the line was clear!

Then to dress it, she went to put the plastic dressing on, WITHOUT putting on the butterfly bit which hold the line in place! I was told it wasn't really necessary, she didn't use them at the other hospital. I said but without it when the next person removes the dressing the line will be pulled out?! I was then told she had been doing this for twenty years! I said I don't care I want the clip.

Then she shoved just a plastic dressing on top, not the usual dressing. I am guessing that it will of peeled off in the next few days, and will stick to the line! So good luck to the next nurse!

I left the ward in tears! I am so fed up of keeping the line clean and dry to prevent infection. And yet for the second time, it's incompetent hospital staff that are putting me at risk.

I am hoping that the line is accidentally pulled out, then I can have a normal cannula and NOT have to stress and get upset about this anymore!

Sorry moan over! Now to enjoy my day with my parents!

Hope everyone has a great weekend xx

really - that is truly truly pants and if you have the energy you should complain. The picc line is only better than a canula if it is looked after!
There are often issues with my portacath but the nurses do their very best to make sure everything is clear and I am comfortable, even if it takes ages.

Really I agree that's rubbish and you should complain. I never had a picc line and though it did get harder to find a vein as time went on it only took a few minutes and sounds like it was a lot less hassle
Hope you have a nice day with your parents to make up for it

Really that sounds awful for you, my friend a former nurse said to me that she believes a lot of the time medical staff are on auto pilot and forget that there is a shocked and vulnerable individual on the receiving end of their treatment. That chimed with me in terms of answers to questions / concerns / worries and getting no response with holidays and then a very curt and to-the-point email. I'm probably just feeling a little sensitive. Enjoy your time with your parents, a bit of pampering perhaps.

I have been off this thread a few days and only went back as far as the Double Bass convo - made me smile, esp the dictionary definition!!

I had my first FEC chemo on Tues aft and it knocked me for six. I was ok for the first four hours following it then was violently sick. The vomiting and eventually dry wretching (sorry tmi) continued every 45 mins roughly, right through the night. The taste of chemicals in my throat was foul. So the Domperidone didn't work for me. I called the chemo hotline at the hospital and they referred me to NHS24 who 4 hours later at 1am came out and gave me a shot in the thigh of another anti sickness called Cyclo-something. That didn't work either and I was sick before the doc even left. I continued to be ill through the Wed morning until I got the anti sickness which was formulated for chemo called Ondeseteron (or something like that) melts on the tongue. That worked. It was a horrible first experience and I know I'm being overly sensitive but I'm already dreading FEC no2 in just over 2 weeks and I'm wondering how I'm going to do it. You all seem to be doing well on chemo and mostly through it which is good, I look forward to getting to that stage! I asked the chemo nurse about my dose but she just said it was standard and worked out for me - in other words no further info but they put 10+ tubes of the FEC drugs into me, I counted 3 of the red one... The oncologist originally seemed apologetic when he told me I was going onto a brutal dose but I have no more info than that, it would just be good to know / be forewarned. The other difficulty was the problems they were having getting a cannula into me. First - fail & painful, second - she thought was in and started to administer the drugs but it was so painful which she said it shouldn't be and my hand started to swell. Her colleague was called in to do the third which worked. I casually mentioned in convo that I had Raynauds / poor circulation in my hands and she said this was the reason they were having problems. Anyway I'm feeling less nauseous and more normal today and getting my appetite back a bit (some cooking smells make it worse! It's like being pregnant again!) scrambled eggs, toast and chicken noodle soup have been my main diet!

Sorry for the moan I hope you all have a lovely weekend x

sorry you had such a bad time hoosy. BUT there are lots that can be done to make sure it is not so bad next time.

Firstly have you considered a picc line? I know really is not having a great experience with hers but I had 1 for 6 months with no issues at all - it made evrything much easier for me. I had all my chemo and all blood tests done via mine plus IV antibiotics when in hospital.
Secondly I can't believe they only gave you Domperidon - you must make sure you at least get Ondansetron as well next time (they may actually have given you some in a drip before the chemo). In addition you can have Cyclizine as well. If this combination isn't going to be enough you can have Emend which stops the sickness for most people. All of these work best if taken before the sickness begins so once you get them make sure you take them to shedule whether you feel sick or not. (I believe there are actually many others but these seem to have got most of us through FEC).
Make sure your onc understands how sick you were so you can get a decent cocktail of these for next time.
You do get massive syringes of the FEC drugs so can't tell if you have more then the standard dose.

Really - crikey what a nightmare. I was very lucky to have lovely nurses who took their time with my picc line so never had issues. It does sound like you should complain about this if you can. How many more chemos have you got left? Enjoy the rest of your weekend.

I can second that Emend and Ondansetron work well. I also get Buccastem but don't know the generic name. I was exactly like you after my first FEC dose, but have had a much better time with the hard hitting drugs!

hoosy I also get Emend. I take it an hour before chemo, and next 3 mornings. I also get Cyclizine, to take whenever I feel nausea coming on. I would ring your oncologist, and let them know how sick you have been, and ask what they can do differently next time to prevent this. If they dont mention Emend, ask for it.

My oncologist told me with the medication that is available for anti-nausea these days, there is no need for anybody to suffer from it. Hopefully, your next chemo experience will be alot easier.

Also, the bad taste in your mouth is normal. I find sucking on Foxes mints help me. Other hard sweets of your choice will probably do the same. Usually this taste will last a few days, and then your tastebuds start to return to normal.

really - that sounds pants :(

hoosy - I had a very similar experience with my first FEC cycle, it's a horrid start to chemo - ditto what has already been said re letting onc know how bad it was - I ended up with Emend + Ondanestron + Cyclizine + metaclopromide to keep mine under control and it was bearable (still very nauseous for a full week after but rarely actually sick). It's also worth asking for some of the ondanestron ones that melt on the tongue to have on standby if you are like me and struggle to take/keep down tablets once the nausea hits - I used to take those before getting out of bed in a morning if I woke up nauseous and it really helped.

Really, I read your comment (yesterday) with my hand to my mouth. You poor thing. (Big hugs). It's shocking and disgusting. It's just awful that you're not being treated with more tenderness and with better care (both medically and emotionally). Very disappointed and outraged for you. How's it feeling today?

and never forgetting that I was given suppositories in case I couldn't keep tablets down - never used them but they are available if you are desperate (in my opinion you'd have to be really desperate !!).

I'd have to be pretty desperate too kitkat :) - but I think we perhaps both came close on FEC a few times, it's a bit like childbirth I think, we quickly forget how bad it was

you're so right Betsy - already I can hardly remember what FEC was like (Tax is still rather vivid). After 3 FEC (the plan was to have 6) I really didn't think I could do number 4 but although I know I had awful nausea I can't really remember the detail.

BTW I have a big toenail that I am concerned about - it seems loose if that makes any sense - hopefully it will hang on . It's on the toe that has had more tingly feelings then any other fingers or toes so that may be related.

Buccastem is prochlorperazine, they melt on your tongue too but I found the taste they left at the end made me nauseous all over again so had to spit them out before I finished them.

hoosy what a horrid start to chemo. Definitely ask for more anti sickness next time. Ondansetron is gold standard for chemo nausea, I haven't had the melty ones though. The injection would've been cyclizine, they really hurt don't they! When I was in hospital the lovely nurses ordered IV cyclizine in instead as they couldn't bear stabbing me so often :) during chemo I had ondansetron, domperidone, cyclizine (tablets) and prochlorperazine plus the steroids, I think they gave me ondansetron in the IV before chemo too. I had low level nausea throughout chemo and threw up fairly frequently, but that combination really helped - I couldn't have more due to other drugs I was on.

really sorry you had such a bad experience, any chance of you getting another appointment sooner to replace the dressing with a better one? I know you're not enamoured with your PICC line right now, but I didn't have one and I had eight cycles and on the last one it took two nurses at least six attempts to get a cannula in, they had to give me pain killers in the end as it was getting so painful. They've improved slightly now I'm not anaemic but they are very tough so it is hard to get blood out etc. When I was in hospital they had used all my veins and I had to fight for them not to use other parts of my body. So depending on how tough your chemo drugs are on veins, it might be worth trying to stick with the PICC line to avoid damaging them too much.

goodness pleased you've got a date, enjoy sitting around. I wish I'd enjoyed it more before my op as I spent months sitting on one of those doughnut piles cushions

Waving to everyone, I hope you're all well x

HI Ruby - glad you're well - I'm sat here watching Covert Affairs (again!).

Hoosy I am so sorry to hear that your first chemo was so awful - mine was too. I ended up in hospital so that I could have emeds via IV and I can't believe that you weren't taken in too. (Dompendone and the Cyclizine injection did nothing for me either.)

With regards to the emeds you definitly need the 'magic pill' Emend (Aprepitant), as recommended by the lovely ladies on here. I ended up on that, plus Dexamethasone, Metoclopramide and Cyclizine tablets, I was also given an anti pyschotic drug that is also good for sickness apparently!

Also speak to your Onc about having a port fitted. If you can try to do this sooner rather than later, so it is in place for round 2.

I know you are dreading your next round, but you can do it. I never thought I could get through it, but I now halfway through and the sickness is under control.

Hoos I'm sorry you had such a bad time for your 1st chemo. Like the others have said though now they know you suffer badly with the sickness you should have all of the drugs next time so it doesn't happen again

Kitkat I hope your toenail hangs on, if not at least it's winter and by the time you go on your holidays it will have grown back !

Hope everyone's having a good weekend

Hate
Hate
Hate The Wait

But dreading (literally) the next bit, too.
Wish I didn't know.
Gd must know I'm a control freak. These times make me try to believe more.
Trying to put it to the back of my mind...but tips following me everywhere. In keeping busy. Very. I've also a desperate urge to tidy the house. Mostly 'cos I won't be able to for a while afterwards and may well have a few visitors. But every time I sit down quietly, it creeps up on me. In the cinema, driving, etc.
I have this nervous feeling. Feel sick. Often.
People call and I can't even talk about it. Only when I'm in a moment of blind panic can I talk about it. Rest of the time I have to push it out of my mind and talk about something else. Anything. Or I'll feel sick and panicky. Like someone's sitting on my tummy.
How will my children find it? My son is particularly sensitive. My daughter is too little to understand. They won't understand that I am more poorly AFTER going into hospital than before. For weeks and weeks. That I can't take them anywhere. That I might be a bit down or in pain sometimes. I'll find that hard too.
Ranting. Being self piteous and dramatic. There are worse things. A lot worse. It'll all be over in a few months. In time for the summer.
Wish I could actually FEEL a reason for going through this. It'd make it easier to face and I might feel more ready and willing. Seems so unnecessary and frightening from where I'm standing.

Thanks for the supportive words ladies.

I feel calmer today, after having a lovely day with my parents yesterday

I am booked to see my BCN on Tuesday and will discuss all this with her. But I have decided that I will make a formal complaint. I don't want anyone to get into trouble, but at the same time I don't want to say nothing and risk it happening again, to me or someone else.

I don't have a problem with the PICC line itself. In fact I have found it easier. Chemo was quicker, blood taken without needles. BUT the stress and anxiety when I can see they aren't looking after the line properly, is just too much to cope with.

What I find most annoying is that the place I go to have the line flushed, isn't just a drop in place! You actually have to book a slot to go in! So why the hell don't they have 'proper' staff there all the time? This nurse was there to help out! Well you surely make sure that the member of staff helping out, knows how to do the job??

Anyway not much I can do now! Will wait and see what happens when this dressing is removed!

Hope you are all having a lovely weekend xxxxx

You're absolutely right, Really. When are you having the dressing changed!

Good for you really I agree you should complain. Maybe you ll save someone else going through your experience

That post to Hoosy took it out of me last night, but I just wanted to report how I was doing on the Tax for those who are due to have it next week.

Good news, so far, so good! I managed to have dinner on Friday evening due to not having any nausea and sickness. I woke up on Saturday morning, again no nausea and sickness, managed to eat fine and no aches and pains either - same again this morning. All I do feel is very tired, this maybe due to the hot sweats at night and the steroids. Onc wants me to do as much as I can, rather than sit in bed or on the sofa all day, so I am off to Bluewater (shopping mall) today - purely for medicinal reasons of course.

So much news to catch up on, will do either this evening or tomorrow morning. Love to you all. x

Tiny thats good to hear! My first Tax is tomorrow morning. I hope I'll have similar reaction.

Tiny glad it went ok and hope you've had a good shopping day, I've been shopping too with dd14 she costs me a fortune !
Mom good luck with your chemo tomorrow

I have been reading all your comments on anti sickness drugs with great interest. I am hoping that when I eventually reach chemo stage I will be able to control the nausea as I have an awful feeling it is going to affect me badly (I was very sick after my first surgery four weeks ago).

I was wondering if anyone has had to have further surgery to gain a better margin and if so how successful it was. I had more tissue removed on Thursday and now feeling anxious about the results.

Just reading your posts has really helped me in the last few weeks - Thank you all