Patchwork Quilt

Earlier this year I joined the esty baby shower and agreed to give two gifts to etsy new moms.  I thought it would give me something to do.  Here’s the first one.  This mom had no preferences at all but as I had quite a lot of spare cotton fabric I decided to give a patchwork quilt a go.  Something I’ve only done a couple of times in the past. 

I used it as an opportunity to see how long something like this would take to make and whether it would be worthwhile to make them to sell. 

It was completely done on the sewing machine even the edging. 

I probably should have spent a little more time with the iron before I took the pics.

Fortunately the etsy mom in question from House of Mouse loved it!

Nap Central

After no naps on Thursday and Friday I got a bit blasé about the need.  Yesterday it was nap central.  I sat down early afternoon with B to watch the rest of the film I’d fallen asleep watching on Friday night and do some knitting.  I was snuggled up on the settee with a fleece blanket and B and we’d got the heating on too.  It was quite cold after some really nice weather but I think I may be a bit nesh too.  B ended up taking the knitting off me as my head was bobbing  up and down like an out of control puppet and suggesting I lie down.  No sooner had my head touched the cushion than zzzzzzzzzzzzzzzzzzzzzzzzzzzz.

 

The one good thing is that when I am awake I do feel more alert than I did and not as much in slow motion.   Maggie said that mental alertness can be affected and when B asked for the second time when I would be able to drive she said that once I was able to read more than a few pages without falling asleep and know what was going on I would be able to concentrate enough to drive.  When pressurised by you know who for a specific timescale she said about a month.  I haven’t  had a problem with reading but B has got over the panic of knowing this and realises that I won’t be getting behind the wheel of the car imminently.  However there are a couple of things I have been having trouble with.

 

There’s this really simple game on the computer where you match sea creatures in threes or more by swapping them on the board to clear them off.  I seem to have completely lost the ability to do this even with the hints it gives.  Occasionally I wouldn’t clear the board in time but over the last week it’s been a case of clearing it once! 

 

‘Excuse me madam, are you fit to drive?’

 

‘Oh yes officer, I managed to clear the crustaceans off the board.’

 

The other thing that taxed my brain on Thursday was Fermat’s Last Theorem otherwise referred to as the instructions for using our new water filter jug.  Bottled water being a no-no, we got a jug as our tap water is not very pleasant.  The instructions may as well have been in hieroglyphics, they probably where somewhere else in the book, but I was definitely looking at the English ones.  I even tried the international language of pictures shown separately.  No comprende. 

 

‘If you have purchased a water filter jug featuring a pour through lid with automatic filling mechanism …’

 

Well since ours didn’t seem to have legs and arms with which to walk to the tap, turn it on and fill itself I didn’t think we had bought one of those. 

 

I kept expecting to see a disclaimer

 

‘If you can’t follow instructions on how to use your water filter jug and you are older than three you should be supervised at ALL times.’

 

Since we still have a bottle of soda water I put the jug down and went back to it on Friday when other than putting the filter in before I’d submersed it in water because I did this before looking at the instructions I was able to successfully negotiate the ‘complex’ procedure!

 

I know that some people, including Beth, had their SCT on an outpatient basis.  I really feel I couldn’t have done it that way with the way I felt and this was confirmed last night from the ‘caregiver’ side of things.  B woke me up to go to bed.  I had a glass of water I’d not touched and in the interest of staying hydrated I decided to finish it before going to bed.  I did and then went to brush my teeth and threw up!  I have been off water, but thought it was due to taste of our tap water but this did seem to be one of the things that came back easily on holiday.  I think this time it was maybe because I had nearly 500ml in one go and then moved. 

 

So there it was in the wash basin and more kept coming up and B stood on the landing staring and couldn’t come in!  Like on holiday I didn’t feel sick for more than a few seconds before or after, it just suddenly made an appearance so I felt okay after.  Fortunately the ‘acquired’ surface wipes came in handy. 

 

I feel fine this morning although did have a lie in.  Normally I’m up at about 7:45, this morning 9:50!

We Have Figures

We went to the hospital this morning, allllllllllll this morning in fact, I know this because B kept stating things to this effect.  There at 9:03 approximately out at 12:20ish so maybe he had a point but it was worth the wait.

Figures

18/5

HB – 8.8*

Platelets – 28

WBC – 2.5*

* These both dropped the day after resulting in a GCSF injection (WBC 1.8) and the stopping of the Aunt’s visit

28/5      

HB – 11.8

Platelets – 28

WBC 7.8

Normal range

HB – 11.8-14.8

Platelets – 150-400 (mine in March 242)

WBC – 3.5-11.0

Apparently my figures today are as good as could be hoped for three weeks post SCT!  I’ll take the nice doctor’s word for it.

Yesterday I had a recurrence of the rash I’d had previously, I thought the marks on my left arm when I woke up were either that or the way I’d slept on my arm.  Not much difference I know but by late afternoon I would have had to slept on well, everything, except my head.  I rang up the Bone Marrow Unit and they said I could take Periton if I itched but since no other symptoms and I’d had it before they’d check it out today.  Today however it’s very faint. 

The strange thing is I felt remarkably better yesterday and quite fantastic today.  The doc at the time said it was an engraftment rash and was a good sign.  Maybe it was my stem cells having another push.  No nap needed yesterday, really tired on getting up but so much better as day wore on and no nap again today.

I go back on Thursday for more blood tests and the inhaler antibiotic but I’ve actually been discharged from the Bone Marrow Transplant Unit.  How quick was that?  I thought it would be months.  And when the doc said ‘We’ll write to whoever referred you.’  There followed an arduous discussion about changing to them.

Me:   ‘Well actually I’ve enquired about changing consultants.’ 

Doc:  ‘Would you like to stay here with us?’

 I of course said I would need time to consider it, blah, blah, blah.  Yeah, right!  A short ‘Yes!’ 

‘Would like to continue care here’ written on notes and a clinic appointment with Myeloma doc in three weeks.  How simple was that?

When we first sat down, before wandering off for drinks twice, the lady behind me mentioned the doc in question.  So I tapped her on the shoulder  and asked what she thought of him after explaining why I was asking.  She’s been seeing him for 16 years and says he’s lovely and couldn’t recommend him highly enough but the need to point out that although she tends to call him doc he is actually prof. 

Whilst in the short queue for the second lot of drinks the man behind me, in some sort of nurseattire, coughed on the back of my head.  I was horrified but recovered by wiping hand sanitiser on it at the next available machine!

Yesterday we managed a walk in the park where I spent loads of time as a kid but where I hadn’t been in a lonnnnnnnnng time and we did something I haven’t done in donkey’s years – FED THE DUCKS!

Here’s a few pics…

Widdle fluffy ducklings!

Bigger ducks and puffed up swan, bottom left, is that some sort of courtship ritual?

Quarry garden.  When I was a girl, many moons ago, this was an aviary.  I know that’s where birds are kept but this was more guinea pigs, rabbits, oh and a peacock.  It permenantly had the heavenly aroma of rabbit poo!

The thought was there, somewhere!

Patriotic pigeon.

That cardy makes me look bulky, okay?  Okay!  I have actually finally lost 6kg not that I feel like it!  (Not much shifted at first but apparently I was holding water and even 2kg can make a big difference bulk wise on my slight frame – nurse’s words not mine.)

Lost – The Final Episode

I caught up with up Lost yesterday which included watching the final episode!

What a cop out! I won’t give details in case anyone who intends to watch it hasn’t seen it yet. You might like it!

A friend suggested this ending at the end of the first season and I said ‘No, it will be way more imgainitive than that!’

Apparently not!!!!!!!!!!!!!!!!!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Didn’t do much yesterday but managed to get to 16:15 before a nap attack. Then from about 20:00 it was nap, nap, nap, wake up for tea, nap, nap, bed. I don’t know how long I can maintain such a rigorous schedule – I may need to take it easy at some point!

Blood Tests

We trundled off to the Royal yesterday for blood tests.  At 20:20 last night I found out they were fine.  This was completely my fault. 

 

We went to the supermarket on the way home, where I sat in the car knitting whilst B rang me with queries.  There were a couple (about 10).

 

When we got home we had lunch, I did a bit of knitting and then kipped the rest of the afternoon.  I dragged myself off the settee at 17:00 and rang the Royal but the nurse was sitting with the poorly patient from Friday.  Gill and Neil (eldest nephew) called soon after, then I phoned a friend I’d been meaning to ring since Friday but had been asleep previously at any appropriate time, then Auntie Ann phoned and I finally rang back after that.  I haven’t got any specific figures because I was too tired by that time but we go back for blood tests and to the clinic on Friday and I may then have in my possession my second ever set of blood results (the first being on the discharge sheet last week).

 

B dropped me off at the main entrance to the Royal but we walked back to the car park.  We were on level 6! 

 

B:  ‘Lift or stairs?’

 

Me:  ‘We’ll give the stairs a go.’

 

After six flights of nine steps each (I counted the last one) I was breathing like an asthmatic 103 year old.

 

We bumped into the Myeloma Nurse at the Royal, well I say bumped, B shouted to him as we sat in the storage cupboard/day unit and he walked past.   Jamie had been on the ward one day when B came in and when I had the little stem cells harvested.  He was helping out as they were short staffed. 

 

When Maggie popped the stem cells back in we had a discussion about consultants and she suggested I could always ask to stay there after I had been discharged from the Bone Marrow Unit.  I had spoken to the Practice Manager at our GP’s about changing a couple of months ago and there is another blood doctor locally who would be happy to take me.

 

With Jamie being the Myeloma Nurse we had mentioned it to him and yesterday he asked if we had pursued it.  The particular doc I needed to mention it to had called in a couple of times but I wasn’t really up to the discussion at the time.  So we are going to mention it at the clinic on Friday.  We would get a Myeloma doctor not a general blood doctor and Jamie as a Myeloma nurse, again not a general blood nurse.  Jamie said the doc in question would be flattered that I had asked to transfer!

 

Still feeling good but tired and my leg hairs still haven’t got the message that they need to fall out!

Photo Shoot

Auntie Ann has taken the afternoon off to go for a photo shoot.  One of these glam-up things?  No.  She’s going to be a spec in the crowd!

 

Our local Rugby League team (The Saints) are getting a new stadium and this is the last season in the current one.  Auntie Ann has been going there since 1964 and so is paying £6.99 to sit in her seat in the stand (there’s something I’ve never understood, why the sit down bit is called the stand) while a team photo is taken in front of it.

 

There will be items for sale and AA intends to buy:

 

• A copy of the photo signed by the first team and the coach

 

• A copy of an aerial photo of the stadium

 

• Her seat (there has been some mention of getting Uncle Ray to attach this to the back wall of the house)

 

Uncle Ray enquired as to what exactly she was going to do with the photos. 

 

Auntie Ann responded that she intended to put them up in the house.

 

Uncle Ray suggested they may not go with the decor – ‘I don’t think so!’

 

Auntie Ann suggested that he may not go with the decor – ‘Oh, yes they are.  If you don’t like it you know what you can do!’

Now I’m not saying AA is fanatical but when she found out where B was from, which is halfway between Saints and close rivals, Wigan, she told me I had to ‘kick him into touch’ if he supported them.

In other news

I’ve not been home five minutes (well, you know what I mean) and I just got a call from Occupational Health about calling out to see B’s mum this week.  I stuttered, stammered and paused and then said ‘I’ve only just got out of hospital, I can’t be mixing with people for a couple of weeks’ – because I was starting to sound simple.  The caller must have been think ‘Appointment yes, appointment no.  How hard is that?’

B rang his mum last night to see how she was and she wanted to know if he could call round to fix the curtain she’d ‘pulled down’.  ONE  of the curtain hooks has probably popped off.  She has blinds as well so it’s not like the neighbours would be gawping at her watching the telly.  Between 21:40 and 21:57 she managed to leave three messages (we didn’t hear the phone, honestly) asking for a call  but since Friday she’s not actually phoned us to see if I’m home, I know, I know, I could have called her but I basically haven’t got the energy to talk to her!

Meanwhile I’ve been waltzing round (not literally) in my jim jams on the basis that if I get dressed I may think I can do anything! 

Still feeling good and although tired first thing not quite as tired now.  I forgot my tablets on Saturday night.  I fell asleep on the settee and nelgected to take then before I staggered upstairs to bed and have forgotten the lansoprazole completely so it’s a good job it’s not essential – I feel a checklist coming on!

Naughty Dream!

Shhh, don’t tell anyone but I had a naughty dream last night.  Are you prepared?  If you think you may be offended look away NOW.

I dreamed I was in a supermarket! 

Alright, that maybe wasn’t what you anticipated but in the circumstances it was very naughty.

Holiday of a Lifetime

I did sit down to do this this morning but I think the keyboard got drunk from the alchol wipes I’d appropriated from the hospital and was playing up.  I got given some cleaning wipes and a bottle of hand sanitiser and told that if there was anything else I’d use to take it as it would get thrown away.  So there were cleansing wipes, more cleansing wipes and tub of alchol wipes.  It was touch and go whether it would all fit in the suitcase but it did with a bit of a squash.  Although when B suggested that it was a tad heavy I did say there were perhaps one or two things that weren’t essential.  I left the towels.

We got home last night at 19:20 after calling at my Auntie Ann’s for the stuff.  Lorna, since you asked here’s a pic…

I have no idea what’s going on with it.  B put it on last night by himself and was heard to say ‘There seems to be more duvet cover than duvet’.  Both did say 6ft.  I had a go at straightening it earlier as there seemed to be corners without bits in but as you can see it still leaves a LOT to be desired.   I’ll take another one once I’ve have a few strong words with it.

When we arrived home B was stood outside the car and I realised our next but one neighbour was out.  The tiny bit of self consciousness at the new hair cut evaporated when I realised, initially thinking he was changing out of his work shirt before going in the house, that he had a towel wrapped round him.  He’d nipped out for his jeans out of the boot thinking no-one was about and then had to have a conversation about how I was standing in a beige towel and bare chested.  B’s closing remark was ‘Well I’ll tell you this, you’ve got guts’.

When our next door neighbour called later the new haircut didn’t bother me at all.

Maggie, one of the lovely (and that has nothing to do with the fact she thought I looked 35) but decidedly no nonsense nurses, gave us our talk before we left.  I wondered why she wanted to wait until B got there to discuss my tablets but it turned out to be much more.  B had ‘nipped’ over to the car park with the suitcase and Joan, the knitter, came in a bit later to enquire if he was coming back up for me or should she get a wheelchair and push me down to the main entrance!  Then Maggie came in and was surprised he wasn’t back so sat down to chat and B turned up.  The one question she managed to ask before he got there was

‘Who makes the decisions?’ 

‘That would be me!  Is it not obvious?’

 ‘Well, yes but I have to ask.’

 B advised me later that they are 50/50, his 50 generally being ‘Whatever you think.’

 Maggie was the one who put my stem cells back in and B was there for some of it and at some point in the conversation it was established that according to B things went in one of his ears and came out of the other.  Maggie had remembered this because she said she had a really bad memory for some things – obviously not that.  So she started off saying she knew she had a bad memory for names say but had got lazy because people expected it.  So B had to get his finger out and do lists as I would probably be forgetful and he wasn’t to get antsy with me when I did it.  I had to do lists too, which isn’t a problem because I LOVE lists.  What I can and can’t eat, she said it may be strict but it’s only for a short time.  I said there was no point going through a SCT and risk it on a bad food choice.  So she said for the next week processed foods were probably best but I could eat as much tinned fruit as I wanted.

 B got a bit concerned over whether I’d be okay if he went back to work a week tomorrow as it may be a problem with work.  So after a bit of toing and froing Maggie told him he’d had three weeks to think about it maybe he should have spoken to his manager before now – I did say no nonsense.  B started saying that a colleague had to take some sort of involuntary leave when his wife had an op.  Maggie stopped him and told him he couldn’t rely on this and he needed to speak to his manager.  They could provide a letter detailing the implications of a SCT which when said in a formal way sounded quite dramatic.  The medical advice was free but Maggie wanted 10 bob for the employment advice.  And after a hug she escorted us to the door.  I laughed at something she said and she said she knew I must be okay because I was laughing.  Apparently due to her memory issues when anyone said in the future ‘Remember Paula?’ It would be ‘No, oh wait the one that giggled’.

 I read one of my post titles yesterday and didn’t remember it – I did remember the post when I read it – so apologies if there has been some rambling. 

I have only complete gratitude for the nurses making it as ‘pleasant’ as could be.  I know some people have a really bad time, Maggie was going to sit with a patient when we left, but at the risk of sounding a wuss (and I didn’t think I was having once spent six hours in A&E with the ligament showing through an L-shaped cut below my knee and no painkillers) I won’t be volunteering again anytime soon.  That said, thinking back to how I felt last Sunday and how I feel at the moment, good but tired, there is no comparison and it is hard to believe that a week (well not even that Wednesday was better on and off and Thursday was okay) made such an incredible difference.  Okay I know I would do it again, I may not like it but I would, because in the end it is worth it.

 At the risk of being sentimental I’d also like to offer a big THANK YOU to you all for being there in spirit if not the flesh!

To follow soon – A pic of my chrome dome as B has just told me I look like the little lad off the start of Kung Fu except he didn’t have pointy ears!

Prepare to be Amazed

 Look at how much knitting I got done…

 

 1 x shawl square – 2nd one being detangled from line with scissors

Socks – I have turned the heel on both and started down the foot but this was the condition they were in when I took that out of the bag this morning.  I can sense a disturbance in the knitting force and another knitter in the North of Scotland tutting, as I did myself at the sight of them.

 

One and a bit Myeloma Buddies

I know, I know so much in so little time!

My holiday reading has solely comprised Under the Dome by Stephen King.  I got through nearly a quarter of that since I’ve been reading it in the library!

Audio books were Alan Whicker’s Journey of a Lifetime.  I’ve been listening to this before bed as he has one of those voices that aid sleep.  The other one was The Fog by James Herbert which as far as I listened is NOTHING like the film.  Although apparently James Cameron’s film is not based on the book so that could possibly be why.

Still on plan for going home today.  One of my first thoughts this morning was about getting in my own bed tonight.  I mentioned that our duvet was probably due for a change and was told that if this was the case it would be a good idea.  So I rang Auntie Ann and she’s going on a shopping spree today although did say ‘When I buy these things for me I take weeks’.  We’re going for a bigger duvet so that will mean a new duvet cover too!  But with the wonder of the web, after a call just to say they (Marks and Spencer, which is right next to Ikea but Auntie Ann doesn’t do Ikea after a shelving incident for us many years ago and practically lives in Marks) have hundreds, she’ll go back later and I can look it up and give exact details. 

I made a reference one morning to room service being slack and this happened to my napkin.

This morning I was a little smartarse and the order for breakfast was

‘A full English please’

‘And if that’s not available?’

‘I suppose porridge and a hot chocolate’

I got beans, bacon, sausage and scrambled eggs  and asked if I really wanted it when I looked astounded.  I didn’t eat it all but really enjoyed what I did, it’s the first proper food for about a week.  It’s been mostly soup and rice pudding oh, and two peas and an inch of pizza on Tuesday lunch.  Today’s mushroom soup for lunch was offered as extra tasty, truly scrumptious in fact as it’s the last.

My haemoglobin had dropped slightly yesterday but it may be due to a ‘woman thing’ (you know, unwelcome visit from an Aunt) and I’ve got some extra pills to take.

I’m shedding hair off my head like a short haired dog.  I just have to brush my sleeve against it and I’m covered.  However my leg hairs don’t seem to have got the message yet even with a bit of a tug.

I’ve been watching Predator today and am really feeling much better as indicated by Arnie’s bulging biceps bringing a big  smile to my face!

Good Morning

It’s 8:11.  I’m up, showered, and eating a yoghurt with a digestive biscuit because I haven’t got a spoon and room service is obviously slacking and my breakfast order hasn’t been taken yet.

I should be going home tomorrow! YAYYYYYYYYYYYYYYYYYYYYYYYYYYYYY

The doc said yesterday about me going home today, and I was thinking if you want to see B produce enough kittens to drown us in here okay then.  The night nurse was the Bone Marrow Co-ordinator and she said at the beginning of the week the aim had been Friday!  I mentioned the possibility of today but that I would prefer Friday and she said it definitely wouldn’t be today because they need to observe temperature for 24 hours after antibiotics to make sure it stays down.  Well that’s a weight off.

When I told B what the doc said he stared and then said ‘No, Friday – I have a lot to do!’  Funnily enough I told my Auntie Ann last night and she said when her and Uncle Ray came to see me when I had the stem cells harvested there was a dazed looking man got in the lift with them leaving the unit who said ‘Well that was a shock!  She’s coming home tomorrow!  I’ve got so much to do!’

I got to go outside yesterday – outside.  The nurse in the afternoon had said that if I wanted I could go for a stroll round the unit and I was a little oh, okay, or I could even go off the unit for a wander between 18:00 and 20:00 because it’s very quiet then.  So when Auntie came we were going to go for a coffee but I decided to untangle some wool first so when we set off at 19:15 the coffee shop was shut so we just went for a wander around the quieter day unit areas of the hospital.  I had my pump in one of the gift bags I use for my knitting as I thought if I used it as a clutch bag I’ll end up bouncing it along the floor.  I got dressed.  I only had boots with me as I don’t do slippers but I wouldn’t have felt comfy wandering round in my jim jams anyway.  But you know what I did feel relatively comfy doing (following a brief discussion before we left the room) walking round with hardly any hair.  I was a little self conscious a couple of times.  We ended up at one of the back doors and went and stood in the fresh air (which was so good) and I could feel the slight breeze on my head and then caught a glimpse of myself in some glass and had a little ‘Oh, I have no hair’ moment.  I know I’ve mentioned this before but I really cannot explain how strange this is to me.  I thought I’d be wearing the wig in the house and if I had taken it off and had to answer the door would be rushing round to find it first.  I would never go for a night out with my hair up it always had to be flowing.  Maybe it’s because I have felt quite crappy at times that it just doesn’t matter now I’m feeling so much better.

So I’m looking forward to being back in my own bed, B being off next week

‘Can I have…

a spoon

an extra blanket

some more milk in my tea

just one sweet

another ball of wool

a Sunday roast

another sweet

a fresh cup of tea

some lime cordial just a hint with some cool but not cold water

my pillow plumped

my feet rubbed

some homemade soup’

‘Well, I really don’t think there was any need for that!’

Speaking of homemade soup, one of the lovely Health Care Assistants, who knits, and I were discussing soup yesterday and she was saying how clear soup would be good like chicken noodle.  All B would have to do is cook the chicken… HAHAHAHAHAHAHA  I mentioned it to B. 

‘Where do I get that from?’ 

‘Well you need to cook a chicken’

‘What, well you won’t get that today.’

‘You mean I might get some tomorrow?’ 

Apparently not.