Gypsy Rose Lee

I think my crystal ball may need a bit of a polish – it’s a bit murky!

That is my little ball of Doxorubicin.  On Friday it did actually fill almost to popping that outer bag so it would appear to be travelling up the tiny tube and into me, and a very pretty colour it is too.

Here’s the speed limit token!

AND when I picked the title of this post I thought Gypsy Rose Lee was well I guess a gypsy – and was quite surprised to discover she was in fact, amongst other things, a burlesque entertainer.  Any similarity stops at the title!

So Sleepy!

Sorry I didn’t update on my new little pumpy friend yesterday but basically we got to the Royal at 11 and a bit and left at 14:00, went to a fabric shop, had lunch, got home about 16:30 and I then slept for most of the rest of the day.  Had a shower at 11:30 apparently after saying, ‘Just give me 10 minutes’ repeatedly from about 10:00 and went straight to bed.

When we arrived at the Royal one of the nurses we regularly see automatically assumed we were getting Zometa and when she discovered we weren’t and we got evicted to the relevant room she said ‘I was going to ask where you were going from lunch this time but…’

Me: ‘Oh we’re still going for lunch but the walk down to the city centre may be a bit much so we’re going to the nearby fabric shop and then the chippy.’  (I have been eating really healthy the rest of the week and there was no-where else to go! Well no other chippy.)

It wasn’t so much the walk down that was the problem as the walk back up.

Now Velcade takes all of what, 10 seconds to receive, and yet we waited and we waited and we waited.  There were four of us getting Velcade, the other three were men strangely enough and were born (because I got nosey) in 1936 and 1958 x two.

So yet another bag arrived from Pharmacy and I could see one of the nurses suspiciously eyeing up a largish package with a ball of something reddish and a blue something in the bag too.  My Doxorubicin! Apparently it isn’t something they use often.  So needless to say I got left until last as it wasn’t just a straightforward shot of Velcade.  I made sure B, who had been nodding off in the corner, was awake for the 10 second shot that he had so been looking forward to, thinking we would be in and out in about 20 minutes!

I had made a logistical dressing error and worn a dress!  The nurse suggested that the easiest way to go would be under the dress and through the armhole rather than leave tubing hanging about on the outside meaning that the bum bag containing the little ball would be under my dress.  Having flashbacks to my SCT and the IV stand and bra I agreed this was the best option.  However once I tried to position said bum bag in an unobstrustive manner tubing sticking out didn’t seem like such a bad idea.  Finally deciding that there was no way to make it unobtrusive I left it slightly front right.  I had my ‘big’ coat on and could just fasten the top button!

I therefore left the hospital looking like nobody owned me and according to B my sense of humour slipped briefly when he said… well we can’t actually remember exactly what he said – it was something like ‘Are you aware of it?’ or ‘Is it in the way?’ and I responded with ‘What the £$*% do you think?’

We walked down to the fabric shop and then back to the Greek chippy where I ordered fishcake, chips and curry…

I wanted a little breaded fishcake not whatever that was – it was however very nice – although I couldn’t manage it all.

So side effect wise I guess nothing really – I mean my temp has spiked but nothing new there, I’m quite tired but again that’s not new, I did have one rush to the toilet yesterday evening (just what you wanted to read after looking at a picture of curry on chips) and then made a request for a bowl – for which B brought me two cereal bowls!  Now bearing in mind that any clearing up would be left to me I requested, well more demanded a bigger bowl which caused all sorts of noises in the kitchen before I was presented with the bain marie and two small plastic bags. After all that it was a false alarm!

The only thing I’m not so sure about is that I thought I would be going back Tuesday as 96 hours for the Doxorubicin from 13:45 Friday is 13:45 Tuesday, but the pharmacist had booked me back in for Monday.  The receptionist said he would check this and give us a call.  As he couldn’t get an answer at home he ended up ringing my Auntie Ann on her mobile, fortunately she was on the other phone to me at the time otherwise I think panic levels may have been really high.  So I need to go back Monday as this is four days – well yes if you say Friday, Saturday, Sunday, Monday but it’s not 96 hours!  We shall see.

Extreme Ironing – Creative Space Thursday

My creative space this week is filled with the ironing board which has now been up three weeks.  Just in case I have to use it (such as ironing something casual to wear yesterday that wasn’t jim jams) we left it up.

When I got this ironing board I raved over it.  The ironing surface is huge! All that space for all that crafting stuff.  You can also plug the iron into the board so you can stand miles (well you know what I mean) from the socket.

Well I should say when I got the first one I raved over it.  That one then slid down the wall and sheared off at one of the welds, our next door neighbour who is very handy welded it for me but it did it again and I thought that the lean that one was exhibiting was due to this. Obviously not.  B took that one back and swapped it.

This ironing board has obviously decided to make ironing an extreme sport, now I seem to remember once seeing a news article about extreme ironers jumping off cliffs or something like that, but it’s not something you expect to encounter in your sewing room.

So since it is now blatantly obvious how I managed to burn myself whilst hurriedly ironing a pair of pants for my impromptu holiday – I took my eye off the iron and it slide off the edge and into my leg.

B has been informed that I would like a new one, not the same brand and not as big – I decided with ironing boards size isn’t everything!

Other creative spaces can be found here.

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.

Stuff I managed to make on my spur of the moment holiday

Whilst I was on my impromptu holiday I finished this…

It was two thirds done already and I think it may need blocking after its washed. BLOCKING!  I don’t usually block anything.

And I did these from my mystery Crochet Club 2011.  The thing is I was sure I’d already done one corner but I can’t find a fourth one despite shaking the bag they were in about 20 times as if it may appear as if by magic.

I couldn’t do any more because of the 2.5mm crochet hook crisis.  However I had two hand delivered to choose from today by the lovely people from here. This is the one I picked…

so now I can finish January’s bits and I notice February’s have been sent out too! I’m such a bad club member/student!

I knit a bunch of Myeloma Buddies too but these cannot yet be revealed.

And I read a lot of The Hitchiker’s Guide to the Galaxy.  I am now on part five of the trilogy and have to admit Part Four – So long and thanks for all the fish – didn’t make a whole lot of sense – could’ve been me!

And this is where my own little Buddy has been lying while I typed this…

talk about making yourself comfy, he’s got one of B’s pillows either end – I won’t tell if you don’t!

 

Back Home

It would appear I was a bit of a muppet yesterday and even though I mentioned seeing Bud I neglected to say I was actually home.  We left the Royal on Friday and arrived home on Saturday!

The plan was two units of blood and back as an out patient on Tuesday. I only started getting the blood at 14:45! And then made the nurse repeat eight hours several times and even though I knew each bag took four hours I hadn’t really appreciated the concept of time until that point.

There was a bit of a delay because of the cross matching which happens every time that blood is given to avoid the wrong blood being given.  The YTS (youth trainee scheme – we don’t have these anymore but this was a good description – not mine) had boo booed on the form. It was mostly manually completed and she’d twisted or omitted a figure so the whole sample had to go bye bye.

However all was not lost as B arrived at 16:30 and we had pizza for tea later from across the way.

We left the Royal at 23:40 and got home, accordingly to B who said we would be home by 00:15 at 00:12 or 00:13!

I had a shower and then sat on the landing with Bud whilst B put the clean sheets on.  He declined my assistance until it came to the buttons and then no sooner was the duvet on the bed than I was under it and fast asleep – I had slept well at the Royal but let’s face it there is nothing like your own bed.

Oh and B did warn me that although he had hoovered and cleaned the bathroom things on the dining table and in MY sewing room were a little out of hand.  I mean I fully expected the ironing board still to be up from when I had panic ironed my linen pants before jaunting off two weeks before and I wasn’t disappointed!

I am responsible for the two spaniels and the pile of paper that I had to root through that Friday night as we needed to pay the credit card bill and B thought that before we went would be a good time!

Again the hardboard came from checking if the little card reader had fallen down the back of the shelves.  I then proceeded to burn my leg with the iron.  It was at this point that B decided we would leave the bill.

I have to admit the little black bag is mine but B had apparently tidied the table!

 

 

Paraproteins should be lined up and shot

Thank you for all your comments from yesterday I had just assumed you would be back especially since a lot of you are far, far away!  It is actually reassuring to know that other people did strange things. Nurses (the Myeloma Nurse and my acupuncturist) seem to readily acknowledge that steroids can be ‘horrendous’ but doctors seem to gloss over it.  After reading it a friend texted me that I needed to do what was best for me and the two B’s rather than what was easiest for the docs.

Anyhoo, Thursday afternoon I found out what my paraprotein level was.  I didn’t post it on Friday as I hadn’t told B and my sister in law occasionally stops by (if you’ve not seen it you need to go and look at Gills’ comment on Boxing Day Part I) and I didn’t want her to mention it to B if they spoke on the phone before I told him.

The docs had seemed pretty keen on discussing treatment options even though they were waiting the results of the bone marrow biopsy saying that they thought my temp spikes were not viral (or wiral according to the doc last week) but as a result of the myeloma cells being picked up as bad cells to be attacked (okay little bit of my interpretation back to one of them there to be sure I understood what he was saying).

So apparently my PP was quantified on Monday afternoon – I’d asked in the morning – and it was when I asked the Myeloma Nurse to explain what the lab had meant by the IGA band of 18 containing a chunk of PP that it came to light.  So from ‘registering but  not sufficiently to quantify’ from the blood tests of 31 December its gone to 15 on 14 February.

After I handed in the list of dex affects on Friday and having been told it was Velcade and dex or Velcade and nothing on Thursday I got offered Velcade and Doxorubicin on Friday because apparently Velcade works better as part of a duo.

I have to admit I haven’t done much today and intend to look things up tomorrow as it isn’t something I’ve heard of before.

My blood counts from Friday were

HB – 8.2

WBC – 3.2

Platelets – 83

My skeletal survey found one new area damage at C7 , which is up in the neck region.  Apparently its the one next to the most prominent one.  I need be aware of getting any pain from this region and say so at once.  There is no fracture so no need to do anything at the moment but there is some loosening so I need to maintain regular Zometa infusions (and I’d been started on calcium and Vit D earlier in the week) as we need to avoid spinal cord compression.

Thinking today would be all about sitting on the new settee with B and Bud watching films and knitting turned out to be incorrect.  I started to get cold and shiver when they were out walking and by the time they got back B needed to go and get a new thermometer as I was taking my temp and my teeth chattered and it broke – just as well the day’s of mercury thermometers are gone!  I suggested while B was going out anyway a fan would be good – apparently at this time of year you can’t get a fan for love nor money.  So after leaving at 15:20 he finally got home at 17:10 after collecting two from my sister in law, meanwhile the m-i-l had woke me up by ringing twice in the space of 5 minutes over something that surprisingly could have waited until Monday.  (I didn’t answer the phone but the ringing woke me!)  So when I took my temp when he got back it was 37.8 which narrowly avoided the 37.9 that I need to ring the ward about – with the way my temp was been over the past two weeks I told the nurse this would most likely mean I was never off the phone.

Bud was pleased to see me (and I was ecstatic to see him) but to be honest I’ve seen him  more pleased when I’ve been out for a couple of hours however, very shortly after I got home he did start eating his raw hide chew and running round with various toys, in fact he’s just shredding one on the landing at the moment – he’d not done either in the past two weeks.

To dex or not to dex. That is the question.

The myeloma doc who is responsible for me introduced himself yesterday with the comment it was probably a little remiss we hadn’t met before.  He then attempted to persuade me to take dex.  A smaller dose which he didn’t think would cause the issues I’d had before – he wouldn’t however agree to putting that in writing.  I had described some of these ‘issues’ to one of the junior docs but didn’t feel that got across just how horrendous it was for us all.

I therefore did a list last night for their consideration – it describes someone completely different than the happy go lucky Paula you all know and love.  I’ve thought about posting about it in the past but decided to leave well alone.  Since I had to re-visit me on dex I took the not easy decision to share with you.

Washing hands, washing me, opening and locking doors, stepping over thresholds, different surfaces, if I attempted to knit I couldn’t bear to undo it.  I’d start to cast on and then leave it for days before I could pick it up again in case something bad happened.  Couldn’t use the stove as kept turning on and off.  Couldn’t get dressed.

Couldn’t sit next to B in case something happened to him.  Couldn’t wear green on a Friday or knit for a week in case anything happened to Auntie Ann.  Thought B was going to be attached by a bear.  Couldn’t stand reflections of anything.

I repeated nonsense phrases to try and keep my mind off stuff even under my breath in public to a noticeable extent.

Was prepared to wrestle B to the floor over some ice cream I left and didn’t want him to eat.  Aubergines and black and white movies produced a near hysterical response.

I used to shake.  I would run my hands under super hot water until they were bright red.  I maybe slept two hours and would wake up with nail marks in my palms.  I would scratch my thighs with a very pointy knitting needle.  I ended up with a very large bruise on my forearm as I couldn’t stop pinching it after having a canula in.  I used to go into the garden and cut down brambles resulting in tons of scratches everywhere.  I gave serious consideration to killing myself because I couldn’t live like that even though I knew it would devastate everyone I knew.

I made a comment about pushing the mother in law down the stairs and it was decided she shouldn’t call as I wasn’t joking because I had no sense of humour at all.

There were none of the ups and downs I’ve read about.  This was all the time.  Looking back I was lucky not to damage my femur as I would give myself a deadline for something eg, bed and run upstairs and leap onto the bed otherwise I would stand at the side of the bed for half an hour because it was really important which foot I picked up.

I could hardly make a decision on anything.  B had to decide what we ate and if he attempted to take me shopping I couldn’t pick anything off the shelf or touch it to pack it and a lot of the time wouldn’t then eat it anyway.  I lost about a stone in weight.

I couldn’t stop counting things.

I was wound up all the time.

I couldn’t cry (an uncle and a friend died).  I couldn’t laugh.

I could go on.

I will fully understand if no-one comes back tomorrow!

 

Creative Space Thursday – Hospital Beds!

Okay so my Creative Space this week is a little different from usual.  Here it is…

and I’ve managed to knit a hat for one of the Health Care Assistants who joking asked for a hat…

and now won’t believe that I knit it!

I finished off a small crochet baby blanket but I haven’t got a pic and it got sent home.  And I did some more of the Crochet Club stuff but then couldn’t get my hands on a size 2.5mm crochet hook – one friend who is still not completely settled with Bud said that she’d rather hug Bud than go into a wool shop for one.  When she was telling her husband he said he would get me one – I told her she should hang her head in shame at that!

The amount of production is a real indicator of how tired I’m feeling, I think I did maybe one  treble crochet last Thursday!

You can probably see some less odd creative spaces here.

I haven’t forgotten Thinning Thursdays but so far no one has been round to w-hey us!