The knitting’s bright, the knitting’s (still) orange!

Okay, I know what am I doing with all my time?  Am I STILL knitting orange? Yes it would appear I am!  So what? Huh? Huh?

And people keep commenting, well more people than usually comment on my knitting, I think it may be a bit eye catchingly BRIGHT!

AND I’ve nearly finished – realistically within the next two weeks but in my mind by the end of the long Easter weekend is seemingly realistic – ahhhh, knitters’ optimism you can’t beat it down with a stick.

Plus my knitter’s optimism is buoyed by the fact B has to work bank holidays so it’s a typical working weekend except no hospital visits Friday and Monday so all that extra time.  I got to go today and Tuesday instead.

Despite my neutrophils hitting 0.5 today I was able to get Velcade, this level is apparently the absolute lowest for receipt of said medication.  There is no pharmacist’s optimism about my neutrophils being high enough for another shot on Tuesday.  I however thought that feeling whoof on Tuesday may account for some of the drop along with having it a day early and I get an extra two days for my neutrophils to regroup and then, when I sat down to use the lap top I put my hand under my chin, I noticed that apparently I have a slightly swollen gland.  Initially I thought it was the spot that had been brewing nearby but no, it would appear to be a gland.

I’m just going to keep my head down and keep knitting and by Tuesday my gland will have gone back down, my neutrophils will have come back up, my knitting will be finished and I can get round to checking my email inbox and its 1,000 unread messages and turning the washed laundry pile back into the ironing pile!  I may be a bit behind with things – only may be.

You be Pluto and I’ll be Goofy

And apparently I am goofy according to B and I was only referring to who got which cup of tea.  In case you were wondering Mickey and Donald were in the dishwasher.

Other Kilgallon household news

I’m now classed as severely neutropenic with a level of 0.4 and therefore wasn’t able to eat the cherry tomatoes I’d included with my packed lunch today.  It also meant I wasn’t able to have Velcade today either.  We’re seeing if my levels go up on their own and my next visit is for a clinic appointment this Friday.

I wondered if my folliculitis (infected hair follicle), which has cleared up completely, and/or floxacillin may have affected my neutrophil levels and it turns out that penicillin can cause a decrease in them.  I’ve written it down in my myeloma notebook  so I remember to ask about it at the clinic.

Along with the bacteria avoiding diet gardening is a no-no because do you know, and I know some of you do, just how much bacteria is in the soil – any excuse to knit instead of gardening.

I have two sore fingers and a sore thumb from sewing up lots of ORANGE knitting.  Obviously now I’ll have to keep a careful eye on these in case they swell up and go funny/manky!  How embarrassing would a knitting related infection be.

The toilet has been blocked since Saturday despite B making a squillion trips up and down stairs with a kettle of boiling water on Saturday afternoon – actually the boiling water was just making the up trip via the stairs and going down a whole or even, hole, other way.  The blockage has also persisted despite two lots of caustic soda going down the pan too.

A plumber came out today and said that his remit goes as far as the ‘toilet area’ and not the drains as they don’t have the right equipment (ahem!) so we needed a drainage contractor.

A drainage contractor is calling out in the morning at which time I will need a stiff drink if he gets it sorted easily and a completely rigid one if it gets complicated.  I am unsure whether the guy at the drainage company appreciated me saying that he should have asked me whether I was sitting down before running their prices past me.

We have been granted use of a neighbour’s toilet and it’s not like we don’t have a second toilet, well it’s more of a facility really, okay, okay it’s a bucket in the garage.

 

 

 

 

 

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 driving dilemna

After going for my blood counts taken on Monday morning I hadn’t heard anything and intended to ring yesterday.  However by the time I’d got back from yoga, gone for a walk with B and Bud I was about to step into the shower at 16:55 when B reminded me so I ended up ringing this morning.

Me:  ‘Hi I came in for my blood counts on Monday and am just ringing to find out when I need to come in again.  It’s Paula Kilgallon.’

Receptionist:  ‘You’re due to come in today for your blood counts again.’

Me:  ‘Nobody told me’ high pitched squeal thinking about how to get there ‘I can come in any time?’

Receptionist:  ‘Yes, see you later.’

Oh, what to do!  Ring Uncle Ray, try the next door neighbours, take Bud out for a walk and then get B to take me when he got up.

B anticipated being greeted on waking up with…

‘Your lunch is ready, cheese and onion on multi seeded brown bread.  I’ve assumed you didn’t want a tomato as well but there’s Red Sky crisps.’  (Highly recommended except they need to change their name to Blue Sky since that’s what I keep calling them and writing on the shopping list.)  Or words to that effect.

Possible new greeting…

Me:  ‘Get your bum out of bed, get dressed and take me to Liverpool.  There’s no sandwich.’

Or I could drive myself!!!!!  I sat gazing out the window pondering the complexities of this decision.  I knew the route well enough.  The ramps between levels on the multi storey car park are generously wide however as B has reminded me on several occasions my Auntie Ann said the turn to get to the entrance barrier was tight and that was in a smaller car.  And what about the way home?  The way B goes requires moving over into sometimes very busy traffic a short distance  after leaving the car park.  Could I do this?  Or I could go the way Uncle Ray does which ends up as the route but where exactly did it become the same way? I was sure I’d recognise it when I got there. Ohhhh, should I… the phone rang…

‘Hi, it’s 7y day unit.  I’ve had a word with the pharmacist and your blood counts were okay so you just need to come in on Friday for treatment.’

The car survives another day without me taking it onto a multi storey car park. Speaking of surviving – little everyday comments can take on whole new meanings in the wonderful world of myeloma such as this…

Me:  ‘Owwww!’  On catching some part of me on something in the kitchen yesterday.

B:  ‘Are you alright?’

Me:  ‘I’ll live.’ Slight pause ‘With a bit of luck.’

B:  ‘Hopefully.’

 

ORANGE!

My creative space today is filled with this…

as it has been for a number of weeks recently.  You will have to wait to see what this turns out to be – it’s a surprise!

Yesterday it was filled with these…

(No, they don’t really open that way.  I still can’t get the my mobile to stop taking mirror image photos.)

Three late and one in advance cards.  I’m unsure on the feather ‘bouquet’.

It was a friend’s birthday last week, one of the big ones, but even on not big birthdays Pat insists that the card should be there to be opened on the morning of the birthday and not a second later irrespective of whether one is born at 00:01 or 23:59.  However until yesterday I didn’t have the enthusiasm/inspiration to make a card.  My sister in law’s is two weeks late. 

I’ve been really er, tired isn’t really the right word.  Tired to me is like when we went on holiday quite a number of years ago and I was probably starting to get unfit and we did a ton of walking and I ended up nodding off over a cup of coffee and piece of tiffin in a mountain sports shop cafe.  When I’m tired I’m sleepy, I sleep and feel better – well after a period of ‘coming to’.  It’s not for no reason that my Auntie Betty used to say ‘Hail smiling morn.’ if she encountered me just after I’d woken up.

I had assumed that with having the Velcade on the 7th by last weekend I’d be feeling bright and perky-ish (despite Bridget saying that she was tired in the off weeks I thought that with no steriods to complicate matters I might perk up).  By Tuesday I was thinking that maybe my haemoglobin had dropped again but it wasn’t quite the same tiredness (that was a kinda sleepy feeling).  This has been I think, more fatigue like.  I’ve knit, I’ve made food, got dressed gone out occasionally but nothing really with enthusiasm.  And obviously not posted anything since Monday because for once believe it or not I couldn’t think what to say.

Then yesterday morning I was up and dressed and standing dazed and confused in the kitchen at 07:35 volunteering to take the car to the garage so the offside rear wheel could be looked at (get me offside) since it’s been squeaking and there was rather a disturbing burning smell from it last Thursday when we got back from the Royal.

After an hour in the garage, knitting orange yarn and reading, I headed home, had breakfast, took Bud for a walk, the first on my own since I got home from my relaxing holiday in the Royal, spent half an hour chopping ivy in the garden (until my back got a little cranky), spent more time with orange yarn, warmed up the Bubble & Squeak for lunch, made the cards, played a game with B on the laptop, got dressed up nice-ish and went out for my tea with the big birthday friend and another friend and still felt good when I went to bed at 23:15.

Today Buddy seems to think that yesterday set a precedent and seems to think he should be getting a walk refusing to go out into the garden for a wee wee and giving me funny looks.  I think I may have to take him on medical grounds so one of his kidleys doesn’t explode – think of the mess.

Other creative spaces here.

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!

 

Clinics and Plays

Friday off we popped for more Velcade (day 8 of the cycle) and arrived at the Day Unit to

‘Have you been to clinic?’ from the very nice young man on reception as I was barely through the door.

Head shake from me.

‘Did you know you had a clinic appointment?’

Further shaking of head.

One of the nurses took blood from my line and off I went with my little sample down to clinic after ensuring that the very nice young man on reception would point B in the right direction.

The doctor we finally saw was new to us.  I had seen her about but we’d never had the pleasure of a consultant.

My blood counts were

Haemoglobin – 10.8 (normal range 11.8 – 14.8)

White blood cells – 1.6 (normal range 3.5 – 11.0)

Platelets – 66 (normal range 150 – 400)

Neutrophils – 0.9 (normal range 2.0 – 7.5)

The haemoglobin increase from 7.9 on Monday obviously explains why I have felt so much better since the two units of blood on Tuesday.  Oh and I haven’t had a temperature spike since Tuesday either!

I got some  more Odanestron anti sickness meds which certainly seem to do the job in managing the little bit of queasiness I’ve been getting, and it is only a little bit – but enough to put me off food!

New to us lady doc also informed us of my bone marrow biopsy results – it was high.  Yes, it was high, I didn’t ask for a percentage and if one had been offered I would probably have stuck my fingers in my ears and LA LA’ed.  I generally want to know everything however this is one thing I have, as yet, no desire to find out.  I’m not even keen on seeing other peoples’ percentages and I think I know why.  With the paraprotein level there’s no lid on it but with a percentage there is a cap of 100 and I can cope with high but am not at all too sure how I’d feel about knowing an actual figure in say, the 80s or (gulp) higher.  So you’ll all have to just go with high too!

Back we went to the Day Unit for the Velcade and having it flushed through caused me an issue – how is it possible my PICC line is above my elbow so in theory I should be able to bend my arm to my heart’s content whilst getting stuff in and it shouldn’t affect the flow – not on Friday.  If I bent my arm to knit the flow slowed down.  I thought I was imagining it and then the nurse noticed and after several go’s of ‘arm straight’, ‘arm bent’ it had to be straight so I couldn’t knit – oh, the humanity.

Then we went out for lunch thanks to Odanestron and after went and ordered the ever so comfy chair for me from John Lewis, where the price had gone up, B made the young male shop assistant go red whilst asking for a discount (as the choice of leather to match the new settee pushed the price up as well) and I stopped him short of speaking to the manager.  As it turned out there was another lady buying the chair at the same time and she did demand the manager.  I don’t think she got anywhere and with the number of times B has mentioned it since I should have let him speak to the manager too.

We didn’t have time to get yarn for my big fat size 19mm knitting needle and 5mm crochet hook – and yes as per Fiona’s use of the same size needle it is for broomstick lace!

After getting home at 18:00 I went to a play at the theatre in Wigan at 19:00 which one of the chaps from armchair yoga was in.  Admittedly the content was a bit of a surprise since somehow I’d forgotten what it was called and thought it was a comedy and it turned out to be Agatha Christie’s Witness for the Prosecution!  It was very good however.

It’s no wonder I slept in until 10:00 this morning but today I’ve managed to turn the clean washing pile back into the ironing pile and get it ironed – it’s amazing how far you can get on two units of someone else’s blood!

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!

 

 

 

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.

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.