Herceptin...and a hickman line...

Hi all

Well finally got into see BCN today to check if my veins have recovered enough to start herceptin - and apparently they haven’t, and never will!

So, I have to have a hickman line fitted. BCN was very good, bought a hickman line in and showed me it, gave me a wee booklet explaining how it’s fitted and what problems you may have if any…the only problem I have is that I am absolutely terrified.

As soon as she said ‘they fit it in day surgery, with a local anaesthetic…’ I could feel myself breaking out in a cold sweat - I just can’t do this, I know I can’t…has anyone got any advice - do you think they will knock me out if I ask???

Sorry for being such a wimp, especially at this late stage in my treatment… but I can’t help it!

Margaret x

have had three of these margaret and the experience was not unpleasant :). Make sure you tell them how nervous you are and you would like a sedative before they start. I think my hospital offer it as a matter of course and you really are not aware of much at all. Have you got a date yet?

dawn
xxx

Oh Margaret I can empathise with you absolutely. My fear about having a Hickman line fitted was I think because it was done under a local and I really felt that I couldn’t, absolutely couldn’t do it. This was before my chemo and the only thing that got me there was that the alternative may be to die. I did not think that anyone would understand this total panic over what could be considered a small hiccup in the big C treatment.
The answer for me was that I let everyone concerned with treating me know how I felt. [This wasn’t easy because the normal me suffers in silence]. My GP gave me diazepan for on the day to calm me down. I took one and kept the others in my pocket just in case… I only needed the one. When the surgeon saw me I told him that I thought I might fight to get off the operating table and get completely out of control. He told me it would be alright. And it was.
Once the anesthetic was given and after I kept telling them that "i was totally aware of everything so don’t start!!! " everything was honestly alright. I was not aware of anything There was absolutely no pain, not even a little hurt. The memories I have are as if I dreamed them. I woke up and went home.

It will be alright.

Nothing stops the fear of having this done , but I do hope that somehow the awful panic will subside for you. I realise now that I wasted so much energy on worrying about this unknown. If you have any questions please post them here and i will share any experience of it.
Margaret [same in name and same in wimp]
I

Hi Margaret

Sorry you have had this news sorry I cant offer any advice personally but like Dawn says make sure they know how nervous you are and I am sure they will sort something out - not a time for being brave LOL!!!

Sending you love and hugs

Karen

XXXX

Thanks all - I won’t say I’m feeling much better about it - I’m not I’m still terrified lol

Think I’m just going to have to tell them how frightened I am and hope they give me something to calm me down.

Waiting for BCN to contact me with a date…

Margaret

The procedure is really ok, so please don’t worry too much, if possible. I was offered either sedation or a local, and opted for the local-but then I was quite relaxed about the procedure,but if you feel you need more than a local, do ask, and I’m sure they’ll oblige.
It’s a strange sensation-not painful, just very slightly uncomfortable for a few seconds at a time. The end result though, is fantastic, and saves so much time and discomfort when access is needed, either for treatment, or for blood samples.Focus on the benefits you’ll get from it, and that may take away a lot of the fear for you.
Good luck-it WILL go well!

Thanks for that Elaine. I spoke to BCN who just suggested I get something from my GP to calm me down - that won’t be enough, I don’t think she realises how flippin terrified I am!

I have a date now - it’s next Friday 4th July - Independence Day haha. Have to go into day surgery at 9.30 am - and have been told I will be out at approx 2 - 3pm - flippin long day just to have a line inserted.

I think at the back of my mind I have the thought that my oncologist doesn’t think I’m going to get past the first two herceptins without my heart rate dropping too low (it’s only 51 at start) - if thats the case I’ll be back the following week to have the damn line taken out again lol

Hey ho - I’ve got to do it - I’m not eating anything on the morning of the 4th though, because I know what I’m like - I’ll be so hysterical by the time I get there they’ll have to knock me out haha. I’m the sort of person who, before going for mastectomy, had to be sedated before I was sedated (if you know what I mean!).

Assuming it all goes to plan - my herceptin will then start the following Wednesday - 9th July - what a run up to my daughter getting married on the 26th July !! (my youngest daughter thinks I am going to be attending the wedding with tubes hanging out everywhere - even though I’ve shown her the wee drawing of what it looks like!)

Margaret x

I’ll be thinking of you on Friday! I’m sure with some sedation beforehand, you’ll be absolutle fine-and honestly, the benefits it brings will far out weigh the stress beforehand. Easy for me to say, I know, but when you think of how often access will be needed for a year of herceptin, then this really is a huge bonus, and saves a lot of what could potentialy be minor, but regular and stressful issues of tracking down the elusive veins. I just love my line!!
Incidentally, the procedure itself only takes about 45 minutes, but they’ll want to monitor you for a few hours afterwards.
Worst case scenario…if you do need the line taken out, I believe that it’s a much easier process. But…it’ll work well for you, and you’ll probably end up as big a convert as I am!

Hi Elaine

I’m coming round to the idea now (though whether I’ll still be as calm on Friday we’ll have to see!).

I can see the benefits (in fact given the mess they have made with my veins following chemo extravasion I wish I’d had it earlier!!) - I think it’s the fact that onc has said there is no way I will get a year of herceptin because of my low heart reading - that I just have it in my mind that the line is going to be in for just a short time - that’s what is making it seem almost like a pointless exercise…

But thanks for the words of encouragement - they are helping believe me!

Margaret

Margaret,
I’ve been following your posts but haven’t chatted before and am sorry you have had such a rough time recently. With regards to sedation, I was like you absolutely petrified…in fact I burst into tears when they called me to day room after trying to do the stiff upper lip scenario… I was convinced that all the things that could wrong would go wrong knowing my luck.I was given intraveneous sedation and was told it had amnesiac properties and I probably would only have a vague memory of anything…
I remenber feeling very calm, being asked to turn my head and slight pushing and tugging with absolutely no pain. It was all over after about 20 mins, was taken for xray and let go home about 2 hours later. It really is so simple and painless. I apologized profusely afterwards for being such a wimp and was told my reaction was not unusual, they were used to it and understood how scary it all sounds. So do tell them and if you can have sedation take it.
Like everyone else has said its so much easier and quicker having chemo than struggling to find a vein. I had 2 chemos using veins before they packed up and wish now I had it from the beginning.
Will be thinking of you this week
Take care
Trish

Thanks for that Patricia

Just thought I’d let you know that I went along today and had the line fitted.

Wasn’t anywhere near as bad as I thought it would be - didn’t even need a sedative !!

Bit sore around my neck at the moment, but otherwise ok. As far as I know herceptin will start next wednesday now.

I am feeling so chuffed with myself lol - and so impressed that I wasn’t a total wimp !!

Thanks for your words of encouragement!

Margaret x

I had a Hickman line put in last week for chemo. I was given a sedative but they upped it part way through once they realised I was a bit
too nervous. Marvellous stuff!!!

It’s only been in for a week and I’m still apprehensive moving around and even with sleeping at night. I’ve just been invited out to a show this weekend and physically I think I’m up to it but I’m a bit nervous about going out. I I know it will get easier with time but is going out in less than a week after it being inserted my nbeing a bit over ambitious?

Grateful for any thoughts (as I won’t be able to get hold of the chemo nurse before Monday).

Brent

Margaret.
so pleased it went without any hitches. Hopefuuly you will find the benefit next time you go for chemo…much easier and less painful than trying to find a vein

Best Wishes
Trish

Thanks Trish

I’ve actually had all my chemo lol 6 x fec and 1 x tax - the last fec leaked into my tissues which resulted in veins being no use whatsoever - the hickman line has just been put in so I can have herceptin. Onc thinks I’m unlikely to get more than 4 at most of the herceptin as heart rate is poor - so the line might not be in that long !!

Brent - I don’t think you are being over ambitious - my line is only 7 hours old and I’m off out in a minute !!

Margaret x