Would you adam and eve it?

A picky PICC

This week the hospital appointments have been fewer but not necessarily any less stressful.

I had the joy of my PICC line fitting on Friday, thinking it was going to be the answer to a lot of problems and to help reduce my stress levels regarding cannulas and blood tests.

I wasn't that nervous about it until the morning of the procedure when I then proceeded to shit through the eye of a needle with nerves before we got to the hospital at 9am. Then I had to go again when I got there... jeez. 

I was actually feeling worse about it than last week's biopsy for some reason.  It's done in the interventional radiology department (ie. where they conduct CT and MRI scans).  We were waiting for about 10 mins in the waiting room when we were called through.  We sat behind a curtain and the nurse came to say that the consultant was on his way and that I would need to get into a delightful gown.  I got changed and Timmy and I sat there.

The consultant arrived and asked 'do you know what's going to happen today?' to which I gave him a quick run down of what it involved...if you don't know these things then they go through it for you.  He said, 'if it gives you any piece of mind, it's our easiest procedure in this department'.  Piece of piss then right??

He asked if I had any questions and the only one I had was 'will I feel it being threaded through my arm?' and he said he couldn't answer that as some patients had said they could feel it and others said they couldn't. I signed the consent form. The nurse also said to me that it would look very clinical in there as they obviously have to be careful with infection control even though it's a fairly minor procedure.  The consultant went in to check everything and then came out to say there was a delay as there wasn't any hot water and he obviously needed to scrub up beforehand!  No hot water in the hospital? Wowzers.

Anyway, I said to the nurse that I needed to go to the loo again and she had to come with me as I was behind some doors which you can only get through if you have security access.  The only trouble was, my stomach was in a right state and so I was in there for quite some time.  Also, the toilet was already blocked and then I proceeded to make that worse and it nearly overflowed when I flushed it... I was finding the whole thing incredibly stressful and embarrassing.  I apologised when I finally got out and she said she would call the maintenance team.... Leave your dignity at the door when you go into hospital.

Then in I go to the radiology room.....  There were quite a few people in there.  Emma was my main nurse (and the one that talked to me throughout the whole thing).  I was so nervous I had verbal diahhorea as well as actual diahhorea (what a great day).  

I had to lie on the table and have monitoring put on me to check my obs.  I had to put my left arm on a table that was attached to the side of the bed.  The bed was brought up quite high and readjusted a few times.

My arm was then ultrasounded so he could find the vein that he was going to go into, and then I had my arm covered in iodine (which was cold) and I had a sheet over me. They told me that the machine above me would also come very close to my face as it was used to take some radiography pictures to make sure the PICC was in the right place.  They were right, it was very close to my face and I had to turn to the side and close my eyes as it was a bit daunting.

Then I had the local anesthetic, which was really stingy again, and he started putting a lot of pressure on arm.  I had to hold my breath a couple of times in between chatting to Emma the whole way through.  He asked me to to stop talking at various points as he needed to ensure that the catheter was going through the vein (it actually goes right up your arm through to a vein near your heart...weird).

The camera was brought down a couple of times.  Once when I had to take a big breath it was the part when it was pushed through my vein and, in answer to my question of him earlier, I couldn't feel it.  He was then wiggling things around while I was still chatting, and then the words....'I don't want to worry you but....'  followed by 'it's in, and in the right plac,e but I can't get any blood out of it' - YOU HAVE GOT TO BE SHITTING ME??

He tried a couple of times and then also double checked that things can be put into it, so he put some saline through it and also some contrast dye, both of which worked and double checked the positioning again.  He was happy with everything, so he got me to cough and wave my arm around (as sometimes that can help), but it didn't. Oh jesus.  He said it might be stuck against the vein wall and when I got moving it might start giving blood.

Then it was over and I had it cleaned and dressigs put over it.  I thanked him and Emma led me out of the room back to Timmy (who had heard what was going on through the door) and I got changed.  I was then given a little piece of card which explained which PICC I'd had fitted and how long it was (55cm in fact) as the district nurses need that info so that they can know how much solution to flush through it.  They have to be flushed once a week to make sure there is no infection or potential for blood clots.

I was feeling down as we headed back up to Rowan Suite as I couldn't believe that, of all people, I was going to be the one whose PICC line didn't give blood....that was one of the main reasons I had it as, reader, you know how knackered my veins are for blood and how much I hate having blood tests.

Ready to go in

Before

After!!

Pre-chemo chat

Back on Rowan suite I signed in and not long after I was called through by Mandy, who is another one of the chemo trails nurses.  She was really nice.

She had to check the PICC line to make sure it was ok for chemo.  I'd told her my blood issue and she tried to get blood out of it herself (again with me coughing and waving my arm about etc), but to no avail....by this point I felt really glum about the whole thing. Why had I bothered going through all this?

She said there were other patients this had happened to and within a couple of hours their PICC lines had started giving blood...I just had to hope I was one of those pepole.  But, ironically enough, I then needed to have bloods taken as I was starting my chemo a few days later and they needed up to date tests, so she had to do a manual blood test in my right arm.  FFS!!! To be fair, she asked if she could take it from my left hand, but I said 'no' - I had already been through enough stress that morning and couldn't face having a blood test out of my hand.  I did ask at how much risk of lymphodema I was, as it had been 10 years since I'd had my lymph nodes removed (which is why I'm not supposed to have blood or blood pressure taken from my right arm) and she said it was unlikely to happen as it had been so long since the node removal.  Let's bloody hope so as now I'm going to have to have both bloods and pressure taken on the right arm as my left arm has the PICC line in it. Sigh.

Anyway, here is a run down of everything else she said (from what I can remember)...Some of this stuff I already knew from my previous chemo 10 years ago, but for those who don't know much about chemo (and why would you), here goes....

• My biopsy result showed that I was HER2 negative.... this really disappointed me as I was hoping it was HER2 positive as there would have been many more options available to me if that had been the case...
• I will be on the actual trial drug (cabazataxel) which is given once every three weeks (so at least if I do have to have my bloods taken manually it will only be every three weeks, rather than weekly, but still....)
• I will have six cycles of chemotherapy (18 weeks)
• I have to keep a 'side effects' diary so that the trial team can use this in the research
• The chemo drug is made from yew trees
• The drug attacks the good cells as well as the bad ones which is why you get awful side effects
• I can get terrible mouth ulcers and differing tastes
• I can get horrendous fatigue
• I can get nausea and sickness
• I can get constipation or severe diahhorea 
• I can get tingling in my hands and feet
• I can get nausea and loss of appetite
• I will start losing my hair pretty much straight away (I knew this from before when it started thinning after about four weeks) - I had the offer of a cold cap (when they freeze the top of your head while having chemo so that your hair follicles don't die), but I know people who've had these and they don't work that well and come with their own horrible side effects
• There are a whole raft of other side effects, but these are the main ones
• I will have an injection in the stomach every day for seven days each cycle (I will be able to self-administer these as I have done this before when I was going through IVF) which is to help prevent infection as my white blood cells will all but disappear for about 10 days after each chemo treatment
• If I get an infection or temperature of any kind, I have to let the team know straight away as it could kill me as I will have no immune system, so I would be taken into hospital and given IV antibiotics
• I have a special form which I can take to A&E if I am ill over the weekend when the Rowan suite is closed which means that the A&E team have to give me IV antibiotics within 30 mins of arriving at hospital
• If I need to be admitted, Worcester hospital now has oncology beds (which they didn't when I was going through it before, so I had to go to Cheltenham)
• There is a 24 hour chemo helpline number to call should I have any concerns or not feel well
• I will be given anti-sickness drugs before the chemo to help prevent sickness (previously these drugs were under licence and very expensive so they could only give a limited amount, which may explain why I was vomiting after my first two cycles of chemo 10 years ago before they put up the dosage, but now the licence has expired the drugs are loads cheaper for the NHS so they give you more)
• I should plan to be in the hospital for about three hours for each cycle - the actual drugs take about an hour to administer but I have to have the anti-sickness, streroids, saline etc also put through the PICC line (some of which are before the chemo durgs and some are after)
• I will have a district nurse to visit tomorrow (Saturday) to change the dressing on my PICC line and flush it
• The district nurse will visit each week to do this

I have to keep this in my purse in case I end up in hospital for something else!

She gave me a 'blue folder' which has all the relevant info in it which I am to take to each appointment and she gave me a huge bag of dressings and other stuff for the district nurse, then we were free to go, and would be back Tuesday 8 May at 9am for chemo cycle one.

Pimp my folder....

Both Tim and I were shattered.  We got home about lunchtime and filled everyone in on what had been going on.

I then got a phone call that afternoon from Rowan suite saying that my chemo would actually be scheduled for 12pm on Tuesday as pharmacy had called them to say, as I was a new patient, they wouldn't have my drugs ready by 9am on Tues morn (cos of the bank holiday).

Out out

I didn't really want to look at my arm too much (although it was covered in a bandage) but thankfully during the week I'd bought a couple of new dresses with sleeves as Tim and I were due out for Jenn's b'day on Friday eve.  How I managed it I don't know, but I did and had fun with the crew.

Long sleeve disguise

Ready to go

The crew

Classy bird

Happy birthday Jenn

It had started bleeding through the gauze a bit on Friday afternoon before we went out and I called the hospital as it looked like quite a lot of blood and they said to go up and get it checked if I was concerned (although they weren't cos of the way I'd described it) and when Tim saw it he said he didn't think it was too bad - I'd just got myself in a bit of a tizz.

Saturday the district nurse arrived about 10.15am (they don't give you a time slot, it could be anywhere between 8.30-12 on Sat and 8.30-5pm in the week).  She came with a sharps box (which I need to keep here) and a load more dressings.

She removed the dressings very carefully (which took some time) as she said she wanted to make sure she didn't pull it out!!! Yowzers. And then took a look at it and actually said it was a very 'clean' PICC line insertion - one of the best she'd seen.  It hurt when she was holding my arm in certain places as there is a nice bruise developing underneath.  It was weird seeing it properly for the first time and actually going through my skin - it makes me feel a bit strange to be fair.

In all its glory.... the blue line is the one that goes into my vein and down towards my heart - wowzers

She also tried to get blood out of it and I was hoping since I'd been home and out and about and slept for the night that it would start giving blood - but no.  Fuck fuck fuck....She said there are some PICC lines in the community that she knows that have never given blood and I think I am going to be one of those people.  Originally the chemo nurse had said that they might consider taking it out and putting it back in again, but we'll wait and see.  Bloody stressful I can tell you.

She then flushed some sodium chloride through it and she was happy that was going in OK.  Originally she had said that if it showed any sign of resistance that she would send me to the hospital as I could potentially have a blood clot. WHAT?!   So thankfully that wasn't the case.

She cleaned it all up and dressed it again and then headed off after booking my next appointment for 15 May.

I had started to develop some pain in my neck and shoulders, and that slowly got worse over Sat/Sun so I've been on the phone to the chemo helpline and they referred it to the 'on call' oncologist who said that as long as my neck wasn't going a funny colour or hot or swollen then I should just take some paracetamol and she how it goes.  But I was to call back if it got worse or I did have any of those symptoms as it could be a blood clot. They have actually called me three times after the past two days to see how I am (bloody great service).   It is getting better now, but this morning (Sunday), it was agony (as I hardly slept last night worrying about everything), but I think a dog walk in the sunshine has helped calm me down.  Plus, I had my head turned on the side for the whole PICC line procedure (15/20 mins) so I might have pulled something!!!

Walking the dog.....helping me to relax

So here I am, bank holiday Sunday.... the sun is shining and I've been in a right state the past two days thinking about tomorrow morning as well....so just think, if you're dreading going to work tomorrow, at least you are not having to go through chemotherapy, so it's not all bad!!

I'll let you know how I get on when I can......