PICCy PICCy PICCy

We should have gone to the Royal yesterday for line care however with me having the sniffles it was suggested I went today instead when the isolation room was free.  My darling husband from whom I strongly believe I contracted said cold came out with an absolute corker when we entered ‘Room 9’, which had two doors but no windows – ‘I’ll go and sit in the waiting area.’ ‘Er, hello, I got my cold from you, you’re still snotty, sit down in the plastic chair, I’m having the nursing home style one.’

Now we waited a while and B doesn’t really do waiting that well.  On this occasion I hadn’t brought my crochet as we’d been shopping in Liverpool city centre beforehand so I had to engage him in witty conversation to keep him occupied.  At one point he took to lah-lahing just in case we’d been forgotten!

When the nurse was removing the old dressing from the PICC line and getting ready to apply the super stingy alcohol cleaner B said ‘It’s coming out.’ To which the nurse responded ‘Is it?’.  ‘Yes’ I said ‘but not yet.’

The line  was plumbed in for the administration of the Doxorubicin over 96 hours but with having one fitted has meant that I’ve had the benefit of 11 out of the 15 Velcades being given through the line and the four weekly Zometa infusions have been given through it too.

Now I know some people get sent up to the day unit after a clinic appointment to get their PICC lines removed.   I suppose I could have insisted on the line being removed after my last Velcade – as the Prof said I would only be having four cycles –  but my next clinic appointment is a week today which coincidently is the date of my next Zometa infusion and despite the inconveniences associated with it ie,

♥  wrapping it up for a shower

♥  trying to have a relaxing bath with one arm held up awkwardly

♥  keeping it covered – I’ve either worn long sleeved tops or a cardy, I was going to say outside the house but actually I’ve worn one or the other most of the time – I didn’t want to show it off – even wearing long sleeved jim jams to bed when it’s been hot – I did once pop a short sleeve pyjama top on but B looked at me like I was crazy and suggested it might not be a good idea which I suppose was fair enough considering Bud sleeps on the bed too – it’s one thing saying the dog ate your homework but got his paw stuck in your PICC line is maybe too much

♥  the stinging for several hours and sometimes overnight after the dressing is changed – the only thing that is sensitive about me is my skin and there has been some scabby sore bits too (nice I know)

I am more than happy to accommodate them for two weeks longer than actually necessary so I can have next week’s Zometa through it.  Basically  I adore it – as Bridget said of her own experiences when I was apprehensive at getting it plumbed in ‘they’re brilliant’.  Other than the above most of the time I’m not even aware of it at all.

Installation itself was actually pretty much painless – the only thing I felt was the needle with the anaesthetic and the guide wire and they really didn’t amount to a sharp scratch.  In fact I have had a number of canulas which were way more painful going in (my toes have curled, I went hot and sweaty on one occasion and on another a nurse got all hot and had to ask a colleague to take over) and bothered me much more whilst they remained in – I do possibly think me knitting or crocheting while they are in may cause aggravation – and then there’s the times it’s taken two or three go’s to get one in at all.

So although I am looking forward to a bath where I don’t appear to be doing yoga I will miss my PICC line and remember our time together fondly.

Lady of the Mist

This week my creative space is filled with cross stitch – which I finally started today (actually I started it on Wednesday and went over three threads instead of two in the middle of my first row so undid it and put it to one side).

Its Lady of the Mist by Mirabilia – I just love Nora Corbett’s designs and have done a few previously.

It ends up looking like this…

So not much left to do!

Other creative spaces are here!

We had a quick trip to the Royal this afternoon for my PICC line flushed and the dressing changed.  When the sticky stuff came of it was and I quote a bit ‘ezcema looking’ so different sticky stuff was stuck and we’ll see how it is next Friday.  I don’t know what I’m going to do with all the time off – oh yes, cross stitch!

Itchy and Scratchy

After an afternoon nap yesterday and an early night, 22:00, which turned into watching a film until nearly midnight, Extraordinary Measures (where a father attempts to find a cure for his children’s wasting disease) – really lovely, I was ready for another trip to the Royal this morning arriving at 10:00 courtesy of Uncle Ray.

The nurse had trouble getting blood from my PICC line so had to do it the old fashioned way and I was still reluctant to part with it!  And then the PICC line wouldn’t co-operate again and I had to sit with my arm out for the saline either side of the Velcade and I’d had to make a difficult decision before leaving the house which impacted on this.  I couldn’t fit the book I really wanted to read, Terry Prachett’s I Shall Wear Midnight (yes I know it’s a children’s book before anyone points it out), in the bag with my knitting, my notebook, my purse, my phone, my sandwiches, a tomato, crisps and two clementines – one with leaves still attached.  So I had to find something that would fit, as it turned out that was 800 Years of Haunted Liverpool that a friend had given me, and all 800 years were read about – well the interesting ones.

I left the Royal just after 13:00 after picking up a prescription for Periton – I have an interesting prickly heat type rash on the backs of my hands.  After confirming that I’d not ventured into new ground with washing powder or washing me powder the pharmacist said it could be the Velcade or the Allupruinol and prescribed Periton but said only to take it if it really itches as it (the Periton not the rash) can cause drowsiness.  At the moment its background itching – if I’m otherwise engaged I don’t really notice.  The next cycle starts a week on Friday but I need to go back Thursday afternoon to get my PICC line flushed and the dressing changed or if the rash spreads I’ll need to go back sooner.

I decided I had enough energy to walk down to Abakhan Fabrics and when I got there at 13:30 decided to ring B who was getting up then.  Part way through the message my phone’s battery went.

I got my yarn – you have to get your priorities right – and left undecided whether to go back to the Royal or to the station.  There were no public phones in sight so as the station was downhill and would have phones I headed in that direction.

I arrived to see a bank of phones ahead of me and to hear an announcement that the train leaving Platform 3 was going my way in two minutes.  So I got the train which turned out to be an express so from the train leaving at 13:57 I arrived in St Helens at 14:12ish!  I knew the buses used to go at 25 minutes past the hour and decided to see if that was still the case rather than ring B from the station, they did and so I got the bus home for an exorbitant fee.

As I was walking along the main road that’s two lefts from our road who appears in the car at the T-junction in front of me – Bernard!  I waved – B looked relieved. Maybe not as relieved as I was – if B had headed off into Liverpool whilst I was sitting at home with Bud I think I’d have needed a bed for a couple of nights or at the very least earplugs!

I’m now off to test drive my new yarn and try broomstick crochet minus the broomstick!

 

Don’t get picc-y with me!

This morning I went to get my PICC line plumbed in.  I have to admit I was still pretty anxious although this had been abated somewhat by Bridget’s comments. I had to be there for 9:30 so my Uncle Ray dropped me off and picked me up again.

And you know what it was pretty much a non event.  I sat down to type this earlier but then got interrupted by my Auntie En and then sister in law checking how I was and then B got back from a walk with Bud and it was just as well or you may have missed out my evening shower which was anything but a non event resulting in B pulling a face I’d never seen before and me demonstrating self control I didn’t think possible in the face of humongous adversity!

Back to 09:30 this morning first though.  The nurse explained how it would go, we established I was a tad apprehensive and one of her colleagues may be in in time to hold my hand and allay my nerves (yes I felt like a COMPLETE wuss at that point), and that setting everything up would take longer than the actual plumbing.

I have to say I have had much, much, much more painful canulas inserted and apart from the initial sticking with the guide wire and then the shot of local anesthetic I didn’t feel a thing other than a bit of pushing.  And no the colleague wasn’t in in time so we just ploughed on.

I did risk a look at one point to find the guide wire sticking out waggling which considering I go for acupuncture I found a bit disconcerting – when I shared this with my Auntie Ann who phoned early afternoon it made her legs go funny. What possessed me to share this I do not know, I know quite well Auntie Ann likes to avoid seeing canulas and generally anything that is sticking out of a human body.  Last Wednesday when she came to visit she particularly threw herself in the chair and exclaimed ‘There’s your butties I’ve had an awful time getting up here from reception.’  There had been a man with a cage on his leg (not a big fan of these myself) and then, as it turned out, one of the health care assistant’s from the ward I was on with what we considered to be a bag of partly defrosted platelets in the lift under a towel which she then turned over and kept agitating – but which looked apparently like murky yellow frogspawn.  Auntie Ann did look really flustered at this point.

So the lovely tiny nurse got the PICC in and then I went for an x-ray to make sure the line hadn’t gone too far.  It hadn’t so she changed the dressing, there had been a bit of a wait for the bleeding to stop on installation, and then I went home.

Now the thought of having any sort of artificial enhancement doesn’t sit well with me.  I tolerate canuals but from the moment they go in I can’t wait until them come out so surprisingly, so far – just in case, this isn’t troubling me at all. In fact I have forgotten it was there several times.  There will however be a requirement to buy some long sleeved T-shirts so that other people aren’t aware that it’s there.

Despite having a shower this morning I decided to have another tonight before B went to work just in case of any problems.  The nurse had said to wrap my arm in cling film when I showered, the line is in my upper right arm (apparently at the Royal they don’t put them in below the elbow because the bending motion can potentially cause problems), however I had a secret weapon recommended by Beth at the time of my SCT holiday – Glad Press’n’Seal.

It’s not available here to my knowledge but I managed to procure some on ebay. I found it to be very good at the time.  So tonight I wrapped my upper arm in Press’n’Seal – a couple of layers just in case – and had my shower.  All went well until it came to taking it off.  I suddenly realised that if I unwrapped it without another hand to hold everything tight I might loosen something – look it seemed a legitimate issue at the time.  So I decided to cut it off.  B chose that of all moments to ask if I wanted assistance and I said yes!

B armed with the Fiskars general purpose size non stick scissors inserted the point under the Press’n’Seal and cut and cut again supposedly up the back of my arm.  I pointed out that maybe a little more to the left would be a better route and drew an imaginary line up the back of my arm, the route B was taking could have ended up round the front nipping some tube in no time.  B adjusted the scissors and cut – ME!  I said ‘Ouch’, B pulled the most panicked face I have ever seen on him and said ‘Did I cut a tube?’ to which I replied ‘No, just me!’.

I went off in search of some old dressmaking scissors with a ball end but obviously couldn’t find them.  I them attempted to find some short of child safety scissor but obviously any I had acquired I wouldn’t have kept because who without kids uses them.  I resorted to plastic paper edging scissors which B declined.

He then realised I was actually bleeding albeit slightly but he still wanted another go!  I meanwhile wanted to scream ‘Put the scissors down and back away from them and me at speed’ or words to that effect.  However I managed somehow, and I’m still not too sure how, to let him near me and my tubes with the scissors again.  This time he took it from the top and I poked my finger in to ensure that no skin was sticking to the Press’n’Seal anywhere near the scissors.  All in all it was successful, one minor nick but one very dry dressing.

The only thing is B said ‘That was better from the top – we’ll do it that way next time.’ NEXT TIME!!!!!!!!!!!!!!!!

 

Doxorubicin here we come

I rang the Royal this morning to confirm that I wanted to go ahead with Doxorubicin and even though I know it had been a foregone conclusion that this was the way I would go, especially following B’s and mine indepth discussion* of treatment options, I knew I had made the right decision because as soon as I got off the phone I felt lighter.  That feeling that comes from knowing you have made the right choice.  And it’s red – how cool is that?  I’m a sucker for brightly coloured medication.

However this means that I won’t be starting Velcade today and the Day Unit are ringing me back later with an appointment for the PICC line to be fitted.  Now the one thing I particularly wasn’t looking forward to on my SCT holiday was the Hickman line and even though I had to look away at the sight of one on my recent holiday, I didn’t actually mind it as long as it wasn’t hooked up to the dreaded IV machine!

On Sunday the site of Sean’s PICC line nearly caused a domestic.  As we all know men are notoriously bad at multi tasking – I’m sure it’s been clinically proven but ‘we’ all just KNOW anyway – so no arguing.  The company B works for is changing its pension provider and forms had to be filled in.  B kindly brought these in for me on my recent holiday and I completed them.  However one form I misinterpreted, said he didn’t need it and ripped it up and apparently he needed that one too!

This form was to the old provider and the bit that B needed to complete wanted information on the new provider – basic information which we couldn’t find on anything.  So B came into the room with his pension stuff just as I was taking another gander (look) at Sean’s PICC line and having a minor ohhh errrr moment.  Having read about it going in previously there were some things I wanted to get off my chest – I mean I’d had an ohhh moment when I first saw it but felt the additional errrr when I realised I may soon have one of  my very own.  Meanwhile B was sat next to me staring at a piece of pension paperwork and even though I knew he wasn’t listening I carried on regardless and then when I had finished he asked a pension related question!

 

* This should be read on Saturday night B was coming out of the bedroom, I was heading into the bathroom and B said something along the lines of ‘So this other drug may make your hair fall out?’ I replied ‘Yes and it might make me sick.’  B responded ‘I’d rather have you bald than bonkers.’  Discussion over.  Don’t worry all really important major decisions are  made in a similar way – there’s none of this debating the ins and outs for hours, completing pro and con lists, and the little nuances that may make a big difference.