Tag Archives: doxorubicin

Nappy time!

As I mentioned  in my last post I did a lot of kipping last week and I felt way more queasy than previously.  Some of the extra napping could therefore have been a result of the additional Cyclizine I was taking to ward off this queasiness.

Some of the new queasiness could possibly be associated with taking a prophylactic {snigger} dose {snigger snigger} of Aciclovir since the Friday before starting this cycle last Monday.  I have always found it possible to eat something even if it was just dry cornflakes.

Anyhoo, I napped on Wednesday, I think, other than my bum bag busting and walking Bud and something craftery I can’t actually remember what I did on Wednesday.  I certainly napped on Thursday when I got back from the Royal.  I remember this distinctly because B perpetrated an act so heinous I surely could have reported him to Amensty International.

I was curled up on the settee when B advised me that he was going to take Bud, who was curled up behind my legs, for a walk.  B said later he realised I was tired because I didn’t get off the settee to wave them off (what can I say, I come from a family of wavers – it’s all I can do not to wave to B when he goes to the toilet). Despite this he left the TV controls on the floor at the other end of the settee than the one my hands were at AND he left Dickinson’s Real Deal on the telly – ARGHHHHHHHHHHH!  I managed to raise my head and locate the controls and then it flopped back onto the cushion and I closed my eyes and hoped sleep would come quickly – fortunately it did so we’re still married.

Friday I took Bud for a longer than usual walk and then had a kip from which B had to rouse me to go the Royal to get the Doxorubicin detached.  Now we normally go for lunch if we go on a Friday but since when we left the hospital it was raining and cold we came straight home and guess what, I had another nap.

I napped Saturday before going to Auntie Ann’s. I got through yesterday without a nap but I did only get up at 10:30.  And today I napped after getting home from the Royal where I got my second to last Velcade.  I am at this moment however feeling quite perky.

Auntie Ann phoned about half an hour ago and confirmed that I sounded perky, if slightly breathless as I had been tormenting Bud when the phone rang.

Speaking of Bud I thought since doing an impressive doggie impression of an emergency siren on Thursday night whilst running from the front window through to the lounge causing his Auntie Pat, who was visiting, to exclaim ‘Was that him?’ the urge to visit with the little doggie down the road had ceased. However during the phone call from Auntie Ann I had to excuse myself to find out what the noise was emanating from our bedroom.  I thought Bud must have fallen off the bed or got tangled in the duvet but no, he was standing staring alertly out of the window at well, the tail of said doggie which was just visible above the vegetation.  How did he know it was her?  He’s only seen her once!

Me bum bag’s bust

Fortunately the drugs supplied by the NHS are working waaaaaaay better than the bum bag.  It’s had a dicky zipper since I first acquired it, but with a bit of fiddling by my crafty hands it has always been restored to working order. However today it must somehow know it’s days are numbered (this being the second to last day of the last cycle of Doxorubicin) and it’s given up the ghost.

(And yes, yet again I am posting a picture that involves me in my jim jams)

I do have a daytime non NHS bag too, something I acquired in the 80s and never used, that I found in the built-in cupboard behind the wardrobe (nearly but not quite in Narnia)…

but this one isn’t really the bum bag equivalent of jim jams.  If I got stuck with the buckle in my sleep I’d know about it so I may have to apply masking tape to keep the other one closed tonight.  Gosh I hope we don’t get burgled I’d look a sight!

Mind you getting a good nights sleep will be a bonus.  If dogs really do age seven years for each human one Bud is a love or rather lust struck teen.  I mistakenly thought that his whining at the porch window last night was a complaint about not having had a walk yesterday.  Today however when he was still grumbling after his second walk today the penny dropped – we had meet a neighbour and their dog in the wood opposite our house on Saturday and his dog had been in season.

So after the speech about the financial responsibility of bringing off spring into the world didn’t work I’ve spent half an hour trying to tire him out playing with the stuffed ‘cushion’ I made him for Christmas and he is now curled up in his basket surrounded by stuffing.  I don’t even know how long female dogs are in season for and whether it is a sufficiently short enough period of time for me to be able to put up with Bud whining in the garden, whining at the garage door, whining at the porch door.  He’s whining nearly as much as I did this afternoon when my left hand shut the door to his treat cupboard on my right thumb.  Don’t worry it’s only a tad sore – the frozen peas, or more correctly petit pois, worked a treat and they went well with the lamb steaks we had for tea too.

Velcade, beading and %&*$£”@ outlaws

Off we toddled today to the Royal for cycle 2 of Velcade and Doxorubicin.  I remembered to wear trousers, that’s not to say I went without them last time of course, but that we had the incident with the bum bag full of Doxorubicin stuck up my dress.  This time I thought it looked hardly noticeable tucked under my T-shirt until we had lunch in a restaurant that had a full length mirror in the toilets and it seemed to stick out like a sore thumb.  B advised me it didn’t plus of course people wouldn’t know what was in it so any mugger would have been in for a surprise.

I opted to crochet while we were at the Royal and started on the February patterns for the mystery blanket.  The beads were quite hard to photograph, hence the listing angle, I’m tired but not yet so tired I’m keeling over.

I have to say I liked crocheting the beads in.  It was so easy.  I once knitted a cardigan as a birthday present for a friend, fortunately she loved it, and that had beads knitted in – which was not as easy as the crocheting of beads.

So all in all not a bad day until just when I’ve been the cause of Bernard’s brother putting the phone down on him.  I answered the phone and was asked in more detail than usual as to how I was doing little realising this was pre-emptive of his conversation with B.

Apparently B should do more for their Mum and it would be nice if she came round to ours for her tea sometimes.  B said no on the basis that this wasn’t agreeable with me.  He then went on to say how we did a lot for her after his Dad died but that in the end I’d given him the ultimatum that it was either his Mum or me – at some point B’s brother had put the phone down.

I feel guilty even though B has told me not to and I know that I just couldn’t cope with having her in the house.  It’s not often that I cry and she managed to reduce me not only to tears twice last year but to near hysterics.

And yes I have felt remarkably well the past week and a half but I’ve been able to take things at my own pace without being under pressure to do anything at all if I didn’t want to.  B probably wouldn’t have been thrilled at getting his own tea every night but would have done it if he had to, is more than happy to walk Bud if I don’t even after doing the shopping, the hoovering and cleaning the bathroom (even though apparently the shower enclosure is not in the same space/time continuum at the point in which he cleans the rest).

The bottom line is I just couldn’t cope with the m-i-l being in the same postcode as me, let alone house, on a regular basis especially since she could give lessons in being relentless to the shape shifting terminator from T2 so why do I still feel guilty!!!!!!!!!!!!!!!!!!!





A First!

Yesterday we had a first and I sincerely hope that we never have a second!

I was safely deposited at the Royal by my Uncle Ray at 10:30.

My blood counts showed my Hb had gone back to 7.9 and as it was under 8.0 two units of blood were recommended for today.

I then had my Velcade and guess what? Yes, you get sold a PICC line and how it can be used for allsorts and then its otherwise engaged (with the Doxorubicin) so I needed a canula for the Velcade and then I needed to provide a cross match sample for the blood which, on the second attempt, the nurse had to coax from me.

B picked me up at 16:00 ish and when I got home I hit the settee and basically moved as little as possible for the rest of the night.

B more or less forced me from the settee so that I could have a shower and he could play ‘Let’s cut off the Press’n’Seal’ and asked me if I wanted him to stay off work.  He’d already planned on having tonight off so that any late exit from the Royal didn’t get in the way of work.  I suggested we see how I felt after a shower, B said he’d get changed into his works stuff anyway, then took another look at me and said ‘I’ll ring in and ask for a holiday.’  The first time this has ever happened.

It turned out to be just as well because after my shower my temperature spiked to 39.6 thus demanding even more time on the settee! However with the aid of two paracetemol, a fan and wet hanky we finally got it down to a more manageable 37. something.  At the moment we’re working on the basis that if its in the low 37s its okay.

I also felt slightly queasy last night and this morning.  The sister said next time I should start taking some anti sickness medication a few days before and then during the Doxorubicin to avoid this.

Needless to say after two units of blood (thank you very much blood donor) I am feeling way better tonight and despite being at the Royal from 9:30 to 17:00 the time just whizzed by, and not because of knitting or crocheting of which not much got gone, but because the company of the three ladies in the same room was exceptional!




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.

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.