Some Dayz – by Buddy

Thursday

P knows that I’m partial to a little taste of yoghurt so on Thursday morning, after her Uncle Ray had dropped her back at home after going to the Royal for blood tests for the appointment on Friday, she was thoughtful enough to collect a cereal bowl from the kitchen for my share.

We exited the kitchen in the ‘Budmobile’ with P driving via the cereal bowl.  I was in the passenger seat on the right so we had to pretend we were in the US but once we’d got past the dining table P was driving with one hand as she’d picked her knitting in the other. So I switched sides ‘cos she’s used to driving on the left and we were transported back to the UK briefly because P remembered the Ice Road Truckers: Deadliest Roads programme she’d seen recently and they drive on the left.  So we popped over to India.  With all the beeping, from the horn and the expletive covering bleep machine, swerving and dodgy manoeuvre around the lounge door is was the most fur raising two metres (six and a half feet) of my little doggy life.

Fortunately the yoghurt was worth it even though I had to work round the whole grain bits in it.

Saturday

P got a spiky temp and spent most of the afternoon on the settee asleep.  We did however get our 7.00 pm tea at 8:15 pm ish.  And then guess what, she slept some more.

Sunday

Yet again P was spiky and there was more sleeping.  P got up just before 8.00 am and took to the settee.  I’ll give her this though when I got up about half an hour later she did get up and open the back door so I could go wee wee.  Since I’ve mentioned going wee wee I would like to point out that saying ‘D’you wanna go wee wee’ in an Aussie accent doesn’t make it sound like I’m going for a barbie on the beach when it’s raining, freezing or dark out.  Oh, and saying ‘It’s wee wee time with Buddy Kilgallon’ can give a little doggy a complex.  I mean it’s not a spectator sport!

Now although P did get up for my toiletry needs when I hinted that I’d like my salmon and kibble breakfast I got two Markies and a Peteromi.

Now I was a little concerned when B and I got back from our walk as P still had The X Factor on the TV despite the Sky controls being within reach.  I was relieved though when I realised that P had slept through most of it.

Oh, oh and before I go for a little nap myself and since Julie asked – this is a Rodeo…

And to pre-empt another question this is a Markie…

P says we can’t have a Peteromi photo as I won’t be able to let her put it back in the cupboard!  I so need to learn how to open the treat cupboard door and use the camera.

Bearly Pyjamas

I finally finished the bear’s jim jams this evening.  When I started adding the vertical stripes in chain stitch with a crochet hook I remembered why when I’d done one of these before I said I’d never do another one.  I wouldn’t mind but I cheated this time too and used one variegated yarn instead of two separate colours.  Oh, and then there was my bright idea of sewing the jacket together before adding the stripes so I could get rid of the loose ends.  Yes, that worked really well until I got to the sleeves and then didn’t have room to maneuver the crochet hook so ended up doing them in chain stitch with a sewing needle.

Speaking of ends, there was also a couple of those to get rid of…

and here’s the finished article…

yes, I know there seems to be some slight difference between the top and bottom but the bottoms do need shirring elastic added – quite a bit by the look of it!

And as it’s the 20th we have the photos of the view from the front of our house…

Right

Middle

Left

 

 

Yesterday it was a completely different story and although it was cold it was quite sunny most of the day – but I resisted the urge to cheat.

I’m feeling generally better – I made it to armchair yoga on Tuesday and then basically slept when I got home, waking up only for the phone, tea, a shower and then to go to bed.  Yesterday I had a big nap late morning and then took Bud for a little mooch in the wood and today I’ve been napless.  I’ve also gotten more of my appetite back today – requesting chicken in black bean sauce for tea which I cooked myself, much to B’s relief!  And my temp has been staying in the low 37s celsius or just over 98.6 fahrenheit.

Oh and while I’m on a roll with the photos here’s some things I got last weekend…

flowers from my Auntie Ann

flowers from a neighbour and…

a hole courtesy of…

Bud and his accomplice Kong.  We both stood at the top of the stairs on Saturday after he’d cast it down the stairs and watched it bounce off the laminate and POW a hole in the lining paper – the lining paper which I thought was such a good idea to use on the radiator cabinets instead of the wooden grille supplied. It’s just as well I still haven’t dismissed the idea of redecorating!

Other creative spaces can be found here.

Mac ‘n Cheese

Last Tuesday I realised I was really craving a particular food item, not one I eat much and in fact I couldn’t actually recall the last time I’d eaten it.  Macaroni cheese.  I looked on the menu, the menu from which my regular menu selection for lunch and tea were cream crackers and spread cheese, and scoured it unsuccessfully for macaroni cheese.  So my Auntie Ann brought me something in.

The following morning when the catering assistant (CA) came round to take lunch orders and produced a NEW menu I said…

‘Cheese and crackers’.

CA: ‘It’s new!’

Me:  ‘As in – it’s been reprinted with Autumn/Winter 2011/12 on the front?’

CA:  ‘No, there’s new stuff on it such as brunch.’  (This turns out to be a somewhat dubious collection of items that may once have been on a shelf near items that would usually be encompassed by a full English breakfast.)

Me:  ‘Mmmmmmmmm.’

CA:  ‘Right, well you can have them for your lunch on the basis you have to order something off the menu for your tea.’

Me:  ‘Okay.’ – thinking ‘hehe I should be at home anyway’

On B’s shopping list for Thursday morning were the relevant culinary items but of course I felt just a tad like not making in for tea.  So on Friday after leaving the Royal we called at a shop opposite and I got a frozen mac and cheese (I believe that may be the US terminology) and it sucked.  Come Sunday night I felt well enough to give it a whirl, well I felt well enough initially but then it took me ages but ended up dishing it out while I had a sit down. This too sucked.  I think I may have just been too tired to enjoy it as B said it was fine – even though he’d not wanted it in the first place.

So yesterday, when I felt properly hungry for the first time in ages, I thought what the heck let’s give it a whirl – I can always get something brought in.  I didn’t know what to expect especially considering the way things seem to be heated up I expected something paler looking than I am.  However it arrived with a definite colouring of grilled cheese colour to the top.  I tentatively poked it with my fork and then gave it an experimental stab (nothing seemed to be moving) and them I ate it – I ATE IT ALL!!!!!  The first hot meal at the Royal that I have ever eaten – actually the first meal as I couldn’t even make it through a salad.  The addition of yellow mustard seeds was, I thought unusual and although visually pleasing they’re a sod when you get them stuck between your teeth.  It was pointed out to me by Auntie Ann that if I wasn’t such a smart alec I could have had it last Wednesday.

I had more today but it was slightly more, I’m gonna go with set, and as the catering assistant said ‘You can have too much of a good thing’ – so tomorrow we are entering the wild world of haddock fish cake with cheesy wedges.

And now for the non food related stuff – I’m still tired but generally not feeling unwell as such, I’m eating more, I’ve done some knitting but it’s lace and I really need to concentrate so it doesn’t mix well with visitors, needing a nap or getting approximately 350  antibiotic infusions a day or rather seemingly continuous.  The ultrasound on my heart appeared okay – the doctor hadn’t seen the report when he saw me earlier today but the radiographer said to me ‘I’ll do a report.  Everything looks fine but I will look at it in more detail later.’  He still thinks it is an infection but honestly doesn’t know where, he’s going to discuss it with a microbiologist and there may be the need for a interesting little test involving a camera down my throat which would take a more detailed ultrasound of my heart – there’s something to look forward to – so let’s all say it together SEDATION.  

Guess where I am? Go on guess. Guess. Guess. Guess. Guesssssssssssssss!

The Royal!  There’s no prize so if you got it right you’ll have to settle for a little hand clap and a cheer – it works for Bud.

I had my appointment for today to take blood counts and see a doctor if necessary.  And of course when I mentioned my weekend temps it was necessary.

I was also quite sick just before bed last night – just as in I got up to go to bed and had to rush upstairs with my hand clutched to my mouth and hoping that Bud wouldn’t get in the way.  He didn’t and I made it to the toilet before regurgitating anything, well actually it was more like everything, everything I’d ever eaten.  After I’d cleaned the loo, the floor (just a bit) and the basin, I had a wash and changed my jim jams, oh and somewhere in-between I blew my nose about 50 times as it was one of those times (and its gross but I’m gonna share) that some of it came down my nose!

Bud and I then went to bed and we had a very disturbed first half’s sleep.  I insisted on having the window open (to reduce any potential temps) and Bud wasn’t happy with this because it was windy.  Okay, seriously he won’t really settle if the window is open and the curtains blow in as he knows at some point the bedroom door will slam shut and he just doesn’t like it.  So he was a little agitated from the start but I think because I was so tired by them I nodded off regardless however it is very, very difficult to sleep when your staffi is attempting to – well I’m not too sure what he was attempting but it involved him almost sitting on my head and constantly shifting position and then jumping off the bed on my side and going onto the landing and then jumping back on the bed from the door side and starting the whole thing again, getting more agitated whenever the door rattled a little in its frame.  The final straw was when I attempted to push him away and in doing so ended up on the edge of the bed.

I got up, went downstairs and made myself a honey, lemon and water, got a little snacky poo as I was a little peckish, took my temperature (38.3°C/100.94°F), went back upstairs, kicked Bud’s basket across the landing and used to it wedge the door well and truly open.  Then I settled down on the bed, had my drink and gave Bud a stern lecture ie, ‘If you don’t settle down I will put you out on the landing with your basket.’  He obviously heeded me as the next time I woke up it was with B telling me it was 08:10 and asking me how I was – it turned out apparently I was grouchy – stating that I would have felt better for a good night’s sleep.  Temp was 38.0°C/100.4°F.  Took some paracetamol.

Uncle Ray took me and my ice lolly (or lolly ice as they say in scouse land) to the Royal where blood counts were taken.  Temperature taken later showed up to be 37.5°C/99.5°F and then later still 37.2°C/98.96°F!

I saw the doctor from Friday and then the registrar from last week who basically said that despite me pulling my lip he thought it was preferably I stayed in due to the really high temps at weekend which he did not consider were disease related.  Plus he heard a heart murmur to which I said isn’t that a symptom of myeloma (from my experience earlier in the year) and he said it can be put he wanted to rule out any change of an infection there so I’ll be having an ultrasound.  There’s also been blood and copious amounts of various antibiotics and tonight and tomorrow NO REVLIMID.  I only found this out at 22:00 tablet time so couldn’t argue, I mean, discuss it with anyone ie, a doctor.

I personally think that my temp starting to drop since yesterday morning, okay the odd spike but generally under 37.5°C/99.5°F, is a result of getting the Revlimid into my system and I feel sure that if I’d taken it tonight along with the unit of blood received so far and the next one to be given after the currently hooked up antibiotics have finished, it would have resulted in a temp spike in the morning and then pretty regular temps for the rest of the day.

But hey we shall see what tomorrow brings.  What I’d like it to bring is some peices of calico, red embroidery thread, wadding and a pattern but I have a funny feeling that might be some peices of calico, red embroidery thread, wadding and a pattern too far for B!

Get Well or Die Tryin’

Where to start?  The beginning is always a good place.  So, when a man and woman love each other very much they… Just kidding.  Let’s start with…

Thursday – Chris and I arrived at the Royal to ‘Are you in the diary?’.  ‘Yes, the myeloma nurse’ who I’d spoken to on Tuesday ‘booked me in with the other receptionist.’ We took a seat and shortly after got called through by one of the nurses who said ‘So you’re here for blood tests for tomorrow’s appointment?’

Me:  ‘Well no, I’m here to see a doctor about the numbness and do I have an appointment for tomorrow?’

Nurse:  ‘I’ll just double check with receptionist.’  On coming back ‘Yes, 10:10.  Do you want to wait to see a doctor now since you’ll be seeing the consultant tomorrow – more knowledgeable that’s why their paid the bigger bucks.  It’s up to you.’

So after having bloods taken we went into the city centre where Chris did a little shopping and we dined Zizzi’s – as they do Chris’s favourite ever meal Casareccua Pollo Piccante and I had good ole Spag Bol (or rather Spaghetti Alla Bolognese).

Friday – I was unsure as to who I was seeing at clinic and when one of the health care workers checked with the myeloma nurse, who was a bit exasperated (not with me) that I’d not managed to see a doctor on Thursday after making all the arrangements for a senior doctor to see me, it turned out our appointment was with one of the transplant doctors and the bone marrow transplant co-ordinator to discuss the prospect of an allogenic (donor) transplant.

We were in there an hour and 20 minutes, possibly because a big chunk was taken up with altered sensation talk.  Along with my right forearm the pad of my left thumb and the right side of my chin now feel odd and I still have, intermittently, the pain in the crown of my head.  Straight after the appointment I got some free x-rays on my head and neck (skull and cervical spine to the more technical amongst us) and Dr S did a request for some MRIs.

When we got to the transplant bit Dr S explained that the role of allogenic transplant in myeloma has no hard and fast rules.  It is neither proven or unproven as THE way to go however, given the way things had gone so far for me, without giving a donor transplant a whirl the prognosis was very poor (he did also say really poor at one point and hey, overall both are better separately than together – really very poor).

Last appointment the Prof had mentioned another autologus (from me) transplant and then a mini allo (from some random stranger) transplant.  However Dr S said that another auto couldn’t really be considered for two reasons – he could almost guarantee I wouldn’t produce any cells to harvest (we had trouble last time and there’d been the subsequent melphalan for the transplant last year) and with the plasma content of the bone marrow trephine being 80%-85% (the Prof must have rounded up to 90%) that was a whole bunch of myeloma cells to potentially give back.

As my paraprotein is zero but my bone marrow plasma cell percentage is 85% and my free lite chains (not something I’ve paid any attention to in the past) haven’t been measured since February Dr S thought it worthwhile to count them now in case the myeloma has mutated and stopped producing a full measureable monoclonal protein – the full one is made up of a heavy chain (IGa in my case) and a light chain (mine is Lambda).  In fully secretary myeloma the full proteins are measured and known as paraprotein, M-spike, PP, M-protein.

In some people however only the light chain is produced and having no accompanying heavy chain to bond with it is not measurable using the regular test that picks up only full monoclonal proteins.  However since the advent of a way to measure these free (unattached and possibly flirty) chains the number of patients that show up as truly non-secretary (eg, not measurable through blood or urine) has dropped to 1% or 2%.  Everyone, with or without myeloma, produces excess free lite chains (maybe in case one of the full proteins gets divorced) but an inordinate amount in someone with myeloma would be indicative of active disease.  So I had blood taken to check out the number of loose lite chains cruising around without a partner.

I also had a blood sample taken for tissue typing (HLA).  Apparently there are 10 potential pairs to match – 10 is good, nine is okay, eight is do-able but not ideal, seven and below are non starters.

The other thing that would need to be looked at is reducing the 85% plasma cell content before transplant.  It may, hopefully, be sitting there inactive at the moment (freelite test pending) but to transplant donor cells at that percentage would be like giving the myeloma cells a chance to claim permanent squatters’ rights before the donor cells have fully moved all their stuff in and made themselves at home.

With regard to the transplant itself if we KISS (Keep It Simple Stupid) the figures are – 1/3 kark it as a result of the transplant or complications arising there from, 1/3 relapse and ultimately pop off because of the myeloma and 1/3 go on to have a long remission.

As we needed to go to my Auntie Ann’s on Friday if I were to see her this weekend (she was going to London Saturday/Sunday to watch Saints vs Harlequins) I didn’t get my lunch out – well not fully, we ended up with our first ever Subway Subs eaten in just opposite the hospital.

Saturday – Letter arrived telling me that I had an appointment on Friday!  I had a slight temp in the morning of 37.3 along with a bit of a headache.  Mid afternoon a friend with myeloma had rang to say there was a local show in aid of Myeloma UK by a young lady in memory of her mum, he’d just seen details of it in the local paper and him and his wife were going.  About an hour later, by which time I’d persuaded a reluctant B that he’d really like to go, I started feeling a bit ropy and my temp went up to 37.8.  So needless to say we didn’t make it to the show – not least because I didn’t want to share anything I may have acquired, because I’m mean like that.  I felt somewhat better after a cool bath and some painkillers, played a computer game with B and then started feeling ropy again and had a kip – very little knitting got done, the volume of production of which acts as a wellness barometer.

Sunday – Temperature this morning 37.3, after paracetemol 36.9, generally felt okay, tired, slightly headachy but okay.  Then at 10:00, the time I’d been instructed to wake B up, I started feeling decidedly off, got up from the desk to wake B and felt sick.  Shortly after, after getting B to encourage Bud to get on the bed with him so I had the bathroom to myself I parted company with the few things I’d consumed in the two hours and a bit hours I’d been up.  How is it though that one and a half cups of coffee, curcumin tablets, a calichew tablet and probably one digestive biscuit (I got two out but shared with Bud) assume the size of a family bucket from KFC when they make an encore appearance?

Speaking of Bud, he’s been having ear drops administered since Wednesday, reluctantly mind but not too badly.  This morning, as he got all excited in a ‘Please don’t stick anything else in my ear – I’ll be really, really good if you don’t’ way and after enticing him in with the treat he would get once they were in – I PUT THEM IN THE WRONG EAR!

We’re supposed to be going to a friend’s for tea tonight so I’m going to take it super easy this afternoon as I HATE to miss out on anything particularly if the missing out is myeloma related. Mind you, if push comes to shove I’m sure she’ll let me lie down on her settee – I mean, it wouldn’t be the first time and it gets me out of even contemplating cooking.

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.