I thought I'd just post a quick update just to confirm my situation, a nurse rang me this morning from the combined day unit to follow up on my trip to the hospital at the weekend - can't fault the efficiency I have experienced through this whole process, I have to say I do feel very supported by the NHS - but I do think it's down to how much noise you make if you are at all worried or confused. Help seems to always be there if you look for it.

After repeating my story the nurse confirmed my original thought - that the vein used for the last infusion has been irritated by the drugs. I spoke to her about the PICC line and she said it was an option if I wanted, and to either call in this week to the clinic or talk to my oncologist when I go on Friday. She also said that it may not reoccur if a different vein is used next time, as some are more sensitive than others - I might give it one more session and see if that gives the affected veins some time to recover - so long as I can get my arm to do what I want it to do!

I knew I should have waited for the clinic to open! the nurses there see this every day of the week and are often more experienced than anyone else about the effects of the treatment. I'll know next time no to try and find solutions at the weekend!

Thanks everyone for all the advice I have been given on here - it is invaluable to know that there are people out there who are willing to offer their support and opinions :-) I hope to be able to do the same.

Gina xx

Hi Gina,

Thanks for your update. It's good to hear how efficiently you've been dealt with. I feel the same about my care and treatment. Good old NHS!

I'm  glad you were able to talk things through with a nurse and at least now you have some options to choose from. I think your idea to try another session is a good one.

In your reply to me, you mentioned about being on your own so may find flushing and changing the PICC line dressing difficult. It is something that a second person would have to do and although I was lucky enough to have a willing partner to tend to mine, I was offered the assistance of a Community nurse if I wanted it.

Good luck with the rest of your treatment and do let us know how you get on and how your arm is doing!

Take care, Jo xx

Jo

Sorry to keep harping on about this I hate worrying but I cant help it. I've just been to my physio appt for the cording in my left arm and I mentioned the vein fiasco. She said that although she's not 'qualified' to advise she has seen it before and said that I should go to the unit whilst I was there. So I duly did - I'm getting much better at doing what I'm told as a result of all this! and I brought up the PICC line option. They said yes, that would help - I wasn't offered though, had to ask! - and they have kept a slot for me to be fitted with one on Monday morning pending approval from my oncologist who I see tomorrow. From what you've said it would seem to be a bit of very useful plumbing ;-) can you reassure me that insertion is not particularly painful? I'm told you have a local anaesthetic and you can't feel anything other than the initial needle which is only like a canula - how long will I have to grit my teeth for? and does it get in the way at all with normal day to day things like shopping bags, hooovering etc?

The day unit have said that I can go there to have it flushed if the district nurse is unavailable. It would seem like the sensible option to have it put in but I can't think straight really and I'm a bit nervous. I'm usually good at solving problems! but this is a different ball game :-(

Thanks

Gina

Hi Gina,

You're not harping on at all! We all have big decisions to make regarding our treatments and if we can use our experiences to support each other, then so much the better!

I can assure you that other than that initial little 'scratch' I felt absolutely nothing. I'm not particularly squeamish, but I chose not to watch the procedure, preferring to look the other way. I was surprised how quickly it was done too!

As for the 'getting in the way' question, the business end of the line was covered with a gauze and then taped down onto my arm. Mine was positioned just above the actual crook of my arm so bending it wasn't an issue.

In the first few days, I was a bit protective of my arm (like you are when you've had an injection) but as time went on I became less protective, but I still remembered it was there so that I didn't catch it. It was in my left (none dominant) arm.

The hospital supplied me with long, waterproof gloves to wear whilst showering/bathing as you shouldn't get the line wet, and I used to wear the glove and secure it at the top of my arm with a hair bobble! I also invested in a plastic sleeve contraption from Boots (a tube with drawstrings at each end that you use to protect a plaster cast) it was £5. But that was just me being ultra cautious. (I'm thinking of using it now to store plastic bags from the supermarket in! It looks like that sort of thing!)

With hoovering, the nurses advised not to do 'repetitious' sort of movements with the PICC line arm, but I just hoovered with the other arm.  Same with the shopping bag - I have a short strap handbag so I just put it on the other arm - I'm right handed anyway.

I hope this is helpful, Gina. The nursing staff will go through it all with you and give you more detail than I have, but it enabled me to have treatment at home, plus no more canulas and the fortnightly 'hunt the vein' game!

Please let me know how you get on.

Take care, Jo xx

Hi Gina

It looks like you have received some great advice on this thread. I just thought I would link you to our patient information on PICC lines in case it answers any questions you may have.

Don't forget too that you can call our nurses for a chat about how it might affect you day to day.

You can contact them on: 0808 800 4040 from Monday to Friday, 9am to 5pm.

Calls are free from UK landlines and most mobile networks.

Best wishes

Jane

That's fantastic, thank you so much you've really helped me :-) advice from nurses is great but to hear it first hand is very reassuring. I'll let you know how it all goes but I have to say I'm not worried now, thanks to you :-)

Gina xx

Hi Gina,

You are very welcome. The nurses will also explain the possible 'down sides' to it (things to look out for like infection around the entry site etc) and at first I confess to being a bit paranoid about it, especially as my partner was doing the flushing and dressings!! I soon relaxed though and had no problems.

Jo xx

Hi Jo

Well that was an interesting day! The specialist nurses I spoke to about the PICC line asked me who my consultant was and told me that she is the only one of them all who is not keen on them. So that made me feel better - she didn't say no, at least. And the nurses were lovely. It was a bit of an experience, I got a heart palpitation while they were putting it in and that made me panic a bit.  I'm a worrier so it was probably just anxiety, although I'm still aware of an irregular heartbeat - but that could be the drugs. Which while I'm on the subject, went in like a dream :-) right decision!!

I've got a big goodie bag of dressings etc and the district nurse is coming tomorrow. I'm still aware there's something there but it did bleed quite a bit so it will probably settle down in the next few days.

My daughter Sophie is paying me a flying visit from Uni on Thursday so hopefully any side effects will have faded a little by then. Although I'm almost scared to say I'm not feeling too bad at the moment so here's hoping it will be an easier ride than previous sessions :-)

The weather has been lovely today, I hope we get a bit more sunshine from now on, it makes us feel so much better. I'd like to get out for a decent walk as soon as I'm back up to speed this week.

Half way through... whahey! Heard some not-so-nice things about Taxotere so I'll probably be asking questions as my FOURTH session approaches, but for now I'm as happy with the world as I can be.

I hope all is well with you Jo, lots of love

Gina xx

Hi Gina,

So glad to read your latest post and that the picc procedure went ok - though I can imagine that the heart palpitation would have caused you a little panic.

I know what you mean about the goody bag! My partner was given extra pairs of sterile gloves as he has big hands, so we still have a few spares in the medicine cupboard!

We had good weather here today too, but I couldnt really enjoy it and get out walking as it was my first day back at work after 6 months off!

I'm having a phased return, so hopefully I'll manage to get to Thursday afternoon without falling asleep under the desk!

Enjoy your daughter's visit on Thursday (I have a Sophie too!   ) and I'm sure you'll be feeling even better by then; it's great to read how 'up' you're feeling.

Take care, Gina and please keep in touch with how things are going,

Love and hugs, Jo xx

Hi Jo

Wow back to work! what a step towards 'normality' for you! I hope it's not too exhausting a week. I am hoping to be in your situation by July all being well, thought I might be able to juggle radiotherapy with a phased return but on reflection and reading that it can be quite tiring I think I'll wait till it is done and dusted. It's only that my six months full pay is up in June but money isn't the only consideration here is it? And my biggest hope is that the treatment can be all wrapped up by mid July as that's my 50th birthday - what a celebration I will have if the timing works out!

I've had an uppy-downy couple of days, was on a bit of a high after Monday and so pleased not to be feeling too many side effects. But the cold that started last week took hold over the weekend and I ended up with a really bad cough which I was concerned about and the chest pain wasn't going away so I called the unit this morning and went in to be checked over. They pulled the line out by 2cm as they said it may be in just that little bit too far, not uncommon apparently and can cause irritation. Got some antibiotics for the cough and came away happier. Three hours out of the house has wiped me out though so I've had an afternoon on the sofa!

Go steady and pace yourself whilst you adjust to your new routine. It's so important not to do too much although the fact that you can ease yourself in says you have an understanding employer which is invaluable.

Love Gina xx