Central Line

No, not the one on the underground!!

I had the bad news yesterday that after only one chemo in my hand the only way forward is to have a central line inserted. I think I reacted worse to this news than when I was diagnosed. Felt like giving up the chemo but my sensible head knows this would be stupid and irresponsible.

I’m absolutely hating the idea, does anyone have any positive tales to share??

Best wishes

Val

Hi Val

I think you’ll find that plenty of ladies have had various types of lines put in and have had no problems whatsoever. I had a portacath inserted for my treatment. What kind of line were they talking about? Was it a hickman line or a PICC line or a portacath? You can always ask for sedation when they do it. I recently had a procedure done and insisted on sedation and I don’t remember anything about it which was fab!

Ruby xx

Hi ya,

I had a PICC line fitted half way through my chemo, I am now on my last in a weeks time! wahooo!
It really is not as bad as you think it is going to be. I had a lovely specialist nurse who gacve me some local anaesthetic in my arm which didn’t hurt and then you feel some pressure where she is inserting the thin tube into your arm but that is about it. I t took about half an hour from start to finish. I t is more of an inconvenience than anyting else as it is a pain to wash with it in as I find it hard keeping it dry.
It is definitely worth having as like you my veins were packing up and I dreaded everythime I had to have some blood taken, it got to be an ordeal and I am not even scared of needles but began to get a little phobia forming :slight_smile:

Anyway I hope this aleviates your fears, it really is a doddle in comparison to the rest of the rubbish they throw at you.

Take care

Morri
xx

Hi

Thanks for the support, everything sems so much better when you hear first hand accounts from others. Like you Morri needles don’t bother me at all and I’m not even fearful of the procedure, I just can’t stand the thought of this invasive thing in my body for so long, which again sounds stupid when you think of the amount of chemo invading every part of you. As you say, it is the inconvenience and I am so bloody clumsy I’ll have this constant fear of pulling it out!! I told my onc it is a punishment for sailing through my first chemo, feel absolutely great in myself (apart from the burnt hand). I had to laugh when he took me quite literally and tried to convince me it wasn’t!!

Ruby, not sure what other name this has other than Central Line which is on all the literature I have been given.

Morri, well done on reaching your last chemo, what a fantastic feeling that must be as mine still seems a lifetime away.

Thanks again for calming me, will let you know how it all goes.

Val x

Val

I thought it would be wierd having that line in my body, but you don’t even know it’s there. I had a heart echo the other day preparing for my Herceptin and saw the end of tghe line just at the entrance of my heart! Fascinating really how it all works. Can’t wait for my last Chemo. To be honest I have had it quite good throughout, a few symptoms but pretty much could get on with my life as usual. I am 32 so think it may have helped being younger but I am so not going to miss it and can’t wait to get back to normal. Got a big party planned for the end of March to celebrate and off to Cuba for two weeks in Uagust so all is good!

Good luck with your treatment, it may sound silly but it will fly by if mine was anything to go by, can’t believe I am nearly there

M
XX

hi Val,
sorry this is happening to you…
but glad you started this post as I may be in same boat as you… my mac nurse says I may need a PICC line as all the viens in my ‘good’ hand and arm are blown and it was very hard last session to get a cannula in - they had to resort to my ‘bad’ hand and that can only be done one more time

It is good to hear positive stories…
I dont think it will come out easily … after my op I pulled my drain really hard - didnt realise it was in the covers I yanked across the bed, and it stayed in… it hurt at the time mind you…but stayed in…

its doable …we can do it…and every step is a step getting back our lives…
hugs suex

Hi Morri

Just had a long chat with my breast care nurse who also tried to convince me it wont be too bad, and doing my sums have suddenly got it down to the possibility of it only being in for approx 6 weeks as, albeit reluctantly, they can take it out after my further 3 epirubicin as this is the toxic drug which burnt my hand (the reason for line in the first place). The other chemo drugs and herceptin are not as harmful to the skin.

As you say Morri, hopefully it will fly by. My way of coping when I was diagnosed was to book a treat for each month during tretment. So far I have had a weekend in Dublin, weekend at Slayley Hall in Northumberland and now deciding where to go for March. It really helps knowing there is something to look forward to.

Before I sign off, interesting that you are going to Cuba, are all your specialists OK with this? I’m sure I was advised not to book a holiday, but short breaks were fine. Good on ya, and enjoy to the max.

Val x

Sue

Sorry, meant to add a quick note to you, keep us informed if you do have the line and we can swop stories. Like you I pulled my drain but the valve did come out and therefore it was taken out and I was sent home a day early, sure they think I sabatoged it as I threatend it enough!!

As you lets keep a smile on our faces on get it done.

Val x

Hi Val

I have also posted this on another thread by Colleen

I have had a Hickman line inserted because of my crap veins.

The procedure was done with a local anaesthetic and a sedative, but I was awake throughout, it was uncomforatble but it was not painful, it was a little tender once the local had worn off but that only lasted a few hours, I have had it in almost 2 months now and it is not at all painful, in fact I dont really know I have it there, it is situated almost near my bra strap so I cant really wear anything too strappy, but then I rarely do.

I have had 2 lots of chemo through it and I am really glad I have had it put, I do not need to have a needle inserted everytime and they can take blood from it as well. I have heard many people having awful problems with phlebitis and painful veins.

You just have to be careful with infections because it is another infection site but mine has been fine.

The thought of having a line put in is far worse than actually having it put, so please do not worry about it, if I can cope with it I am sure you can

Linda
X

hi folks,

val - I see my mac nurses next week to talk over what will happen next… both hands and arms are sore and thats a week after the last session… this stuff is so powerful!!! Not sure how I feel - never used to bother with needles/giving blood, but the last 2 sessions have been so upsetting with the problems getting the potion into me that I can almost feel my veins scrambling back up my arm whenever I think of the next seesion…its my last epirubicin though… mmm getting the diagnosis cancer is just the start… only those whove been through it understand… and chemo can be so different… I had someone telling me chemo was a breeze coz her friend didnt lose her hair, wasnt sick and never missed a days work… I wanted to drag her to my house when I was passing out on the floor and being sick when ever I moved too fast. …sorry - I’m a little mad today… it is hard and I know it has to get harder still before it gets better and it will get better and we will feel like our selves again… and hey ho I may even have to worry about not eating that extra helping… at the moment food is yuk!

linda - did they have problems with plebitis and painful veins with the line or without it? Just wondereing - I dont know what plebitis is, but my hands and arm sure achaes especially if I bump them accidently…

take care
suex

Hi Sue/Linda

I have defo got to have the line in next Thurs morn, then my chemo in the afternoon. I’ve told them I’ll do it for the good of my guests who are willing to sit with me as it should only take an hour for the chemo to go thru, it took 3 half hours first time!! Your positivity re the line did help Linda, thanks.

To add to this great news my hair has chosen this time to start parting company with me, my OH has just wanted to go to the pub but I said no as I might be bald by the time he comes back!! Do know it will take longer than that but it was an excuse as I’ve barely seen him all week!! And last but not least, I have been refused any top up to my (lack of) pay so won’t be able to afford to go out and test my wig!!!

Sue, check in and let me know how you get on

Good weekend to all

Val
x

Hi, Val
Just joining this thread. I am having my third chemo on the 5th of March and had to have a PICC line put in at the begining of it all, because I am having FU5 on the continuous drip (the bottle-pump is constantly attached to me). I understand how you feel, because when I was told about the necessity of the line I cried for a few days, but what upset me most then is having the bottle constantly attached to me.
The procedure of having it put in is not too bad. It is a bit painfull, but the pain does not last long at all and it is bearable. I was unlacky to have it done twice, as the first attempt was unsuccesfull and when they took me for an x-ray, the line went up into my neck rather than to vena cava (the large vein that enters the heart), so they had to pull it out and start again in the new place on my upper-arm. Tip: when the start threading it in make sure that you are laying absoluteley flat (ask to remove the pillow from under your head) and tilt your head to your chest really hard when they ask you to.
Now I am very glad that I have the line, as watching people, who are next to me in the room on chemo having 4-5 attempts before the needle goes into their vein correctly is heart breaking. Although I don’t need to worry about the Epirubicin causing much damage to any veins as it goes in as it goes into a very large vein.
Apart from the nuisance when bathing, you will not notice your line at all. But do put a warm hot water bottle on it for the first 3-4 days every 2 hours, as they advise - it helps your body to accept it.
Best of luck,
Irina

hi val
still waiting to find out when I see the mac nurses to talk about the next chemo and vein problems…hope it goes well this thursday - let know how it is and what you think eetc…

know what you mean about the hair - mines seems to be falling out and shrinking… the eyebrows and eye lashes are patchy - are you going to cut/shave your head? Im not sure what I’ll do with mine - the condition is really poor - looks like sticky out 2in straw… but could I cope with immediate bald? I’m not sure. I got a shock in the shower with my pubs - somehow I’d forgotten they would go too!!

Hope you manage out soon with your wig - my first place was the village shop - and they were very supportive…especially the time I went in and the wind was so wild the hair was all over the place - we did have a laugh…

good luck thursday :slight_smile:
suex

Hi Sue

When my hair started coming out Friday it was just very light, same on Sat. Sunday morning I went in shower and it came out in handfuls! After weeks of thinking about how I would deal with it it was strange, I just sorta got on with it. To help me on my way I blasted out my favourite Proclaimers CD and sang a long with it as this always cheers me up! It took ages as every time I ran my hands thru it was still coming out, but I felt totally in control and just rolled each lot up into a ball and put it to the side of the shower, no loose hairs everywhere. I had hoped it would all come out and be done with but was in a hurry, taking mam out for Mothers Day, so had to finish it off this morning, tho I still have a bit as again had to get out of shower for friend visiting! Hopefully tomorrow will see the last of it. The timing both days was spot on as I had no time to get upset and no-one, not even family, knew I was wearing a wig, how good is that?! BTW, had vowed from begininning I wouldn’t shave, pleased I was able to stick to it.

Will tune back in on Thurs or Fri and let you know about the line, need to keep busy next couple of days to keep my mind off it.

Oh, all other hair intact, well for now anyway…

Toodles for now

Val
x

Sorry to take so long to reply Sue I have been away for the week end

I had my Hickmans put in before treatment, I never had any put in through the veins because the are so tiny, (the only thing about me that is tiny lol) Plebitis is when the the veins get inflamed and Chemo is renowned for it

Linda

hi folks

hi val - its a funny thing this having handfuls of hair - mines is coming our slowly but surely in the same manner… it is becoming annoying - its on the back of the sofa, swirled round the inside of the wool hat, everywhere! I’m starting to feel my scalp and all its bumps …seems flat on top!.. new new new…
you must have a really good wig val- mines is good too but it is very definately a wig - especially the fringe… and even more especially when it is windy! I must start wearing a scarf… head scarf queen style hee hee…well I live in the country so I may get away with it…:))
Good luck on thursday…

thanks Linda - hope youd a good weekend - its fine to get away for a break. I’ll ask my mac nurse when I see her to talk about my veins and etc. My hand and arm are quite sore - and very sore if I bump them at all. Its amazing how our bodies will heal…guess it just takes time and lots of good food…mm… now that i feel better it is sooo good to be able to eat well again…

the sun is shining here - there is snow on the ground but just enough to make everything look good…hope all is well with you all…
Suex

Hi Everyone

Well, the deed has been done, had a Groshong (skin tunnelled venous catheter) inserted on Thursday, wot on earth was I worried about?! Too late for a sedative but I didn’t feel a thing. Strange how the mind works but I wasn’t thinking about wot they were doing to my top half, all I could think of was that I was on an operating table with my gown on having surgery, yet I still had my boots on!! Mine is actually in my chest, I wore a V necked top and asked if they could avoid the area as I couldn’t wear anything too high or I feel suffocated, and they very kindly obliged. Went stright for my 2nd chemo and it only took 54 mins compared to 3 half hours 1st time, so now feel it was a really positive move. I made them cover the entire thing with dressings so I cannot see anything, felt this was the best way I would cope, it is just the same as when I had my wound dressed after surgery.

I’m gonna stay positive and just hope that I’m lucky enough to avoid any infections, surely I’ve had my share of set backs for now??

Well, I’m gonna don my wig and pop down to the pub for a couple of guinness, need to get my iron somewhere!

Thanks once again ladies for all the positive comments, and hope anyone waiting to have a line fitted sails thru it in the same way.

Bes wishes

Val
xx

hi folks

gald to hear everything went well Val - it is sooo good to hear positive stories… shrinks those fears…how are you finding the showering etc? is there a nurse coming in every week to change your dressing etc? good luck with it and with avoiding infections etc.
thanks Linda for the info. hope all is going well with you.

well Im on the boat tonight - should get my last epi on thursday all going well… my hands are still sore and brown… but my positive MAc Nurse says they may manage another lot … feeling appehensive … well scared would be nearer the mark… about this last lot. But hopefully it will not be so bad as the last time… then its onto CMF…my prophet-of-doom MAc Nurse 'kindly 'reminded me that that involves twice each session coming in and with my veins…mutter mutter … she’s also the one who muttered on about blood clots and infections and etc re the PICC …I’m beginning to hate her… its very peculiar … I dont hate anyone… ! But she fills my head with words that frighten me…
I am so glad to have you all out there with sense and positive words…yes I know things are rough at times… but positive words and true good stories go a long way to getting us through the rough patches…
sorry Ive ranted on a bit… put it down to last epi nerves…

take care all.
Suex
ps we have 2 Mac Nurses here … and they are chalk and cheese…

Hi Sue

Know exactly where you are coming from when the medical staff insist on using long medical terms to describe things to you. If I want to make sure I have understood something I put it to them in ‘my words’ and ask if I am right, if they start to interupt in ‘their words’ I stop them and make them listen to me!! If the not-so-nice mac nurse is getting to you can’t you have a word? I had a bit of a bad start with the head nurse of my onc unit but talked it through and said next visit we would start afresh and it worked. The last think we need when facing all of this is more stress due to staff issues.

I went yesterday for my first line flush, it was nothing, and I made them cover it well up again. This helps in the shower as the dressings are waterproof and I just have to be careful not to get it too wet. To be honest it is a bit like when I had my wounds dressed after surgery. In future I have asked to have these visits coincide with a pamper treaments so I am going for something nice and not just the flush.

Hope your last epi went OK today, you’re not that far ahead of me. You can keep me informed how the second part goes so I’ll be prepared!!

So much for my early night…

Kind regards

Val
x

hi Val

day 8 and I’m feeling much better than last time… yipee!! lots of sitting + sicky but no fainting this time…
heart played up with epi again but stayed in hosp overnight and most of next day and stayed south another night before travelling… the hosp staff are so good.
for the chemo the doc came with a young doc to look at my hand and thankfully the young doc admitted he’d rather leave it to th
e older doc and boy did I feel relieved! That doc managed it fine although my hand in now a mass of bruising and v sore…
i’m trying not to think about the cmf with its twice a month… the PoD (prophetess of doom) Mac Nurse mutters about a line in…but I dont trust her… adn you are right I will need to get some sort of positive relationship with her going… Ive 8 cmfs then a year of herceptin every 3 weeks… …and cant go south every time so I will try and talk with her… she scares me though…
anyway sorry to go on about me… how are you?
is the line getting easier to have? and how did you last chemo go with it in? waht happening with you?
Happy Easter with lots of chocolate (liquor?) lol
suex