B didn’t waste any time!

After a meeting with one of our consultants, the myeloma nurse, the second ward sister present, refeering I think, me, B, and as circumstances turned out, Auntie Ann and friend Chris T not G, I got home leave until Sunday night.  Let me tell you I was glad to get back for a rest – I have no idea where the weekend went.  I didn’t even have time to get dressed Sunday.  I mean yes, some days I just choose (cba*) not to get dressed, but Sunday I fully intended on putting outside clothes on but it just didn’t pan out and yet I didn’t seem to get that much done.

Anyhoo back to Friday and my return to my usual place of residence.  After him appearing all upset about the current situation I arrived home to find that B had already allowed another bird to move in!  AND if that wasn’t enough Bud was obviously fond of her too.  Okay Bud didn’t actually say so but the fact that he hadn’t tried to eat her speaks volumes.  Here’s the floozy showing off her ass…

I mean I am just basing Bud’s fondness on the fact that he hasn’t invited her to dine with him with her being the main course at least.  I for my part at welcoming her to the family provided access to the greenhouse in case she wanted a dry sheltered spot.

Before

After

B bought some bird seed when he shopped on Saturday and I liberally applied it round the garden included into the green house. Now although I never saw Pigina venture in there herself, the friend that brought me back in to The Royal last night saw her wander in there for some seed. She actually spent Saturday night perched on an upright paving slab near the shed – Pigina that is not Chris G.

Chris thinks Pigina might be at risk of getting eaten by a bird and indeed that’s how she comes to be staying with us in the first place. I however an of the opinion that she flew into the window. I am basing this on the greasy looking pigeon size splatt on the back bedroom window…

It’s about central – you might have to tilt your head at an angle.

Now I have really no idea where the time went at weekend. I had BIG plans and yet didn’t seem to get much done. What I did manage was to finish a Myeloma Buddy I started on Friday.

Gingerbread Buddy

One of the other things I did was a bit of tidying up, now bearing in mind that B tends to let stuff pile up on the dining table while I’m away – heck he attempts to let it build up when I’m at home.

The flowers were kindly given by a neighbour over a week ago – they appear to have kept well!

And look at this item of unsolicited unaddressed post we received…

So where are we with regard to the myeloma well, as a nurse said when she was asking me what the consultant said this afternoon, ‘so really everything is still up in the air’ and basically it is.  I saw an oncologist this morning regarding radiotherapy on my arm, as I thought, but she also mentioned it for treating the myeloma in the spinal fluid.  Chemotherapy injections into the spinal fluid would have to be put on hold whilst the radiotherapy was taking place as the combination would be too toxic.  The doc suggested radiotherapy to either my skull or my skull and spinal cord, I opted for the latter however do not have to make a final decision until later in the week.  There could possibly be one injection before and then they could be recommenced after.  I’ve opted to get a bone marrow biopsy done tomorrow, well I guess that would be today now, Tuesday anyway.

Anyhoo let’s just cut to some good news. Yes we do have some!  I asked about starting overnight peritoneal dialysis today and the PD nurse came for a chat.  Following on from a conversation he’d had earlier with the renal consultant when she came to see me it turned out that they thought the frequency of the PD could be reduced, either by doing it times a day for seven days a week or four times a day but for less days.  I’ve opted for four times a day Monday, Wednesday and Friday with nothing on the others other than draining the overnight fluid off.  I asked B for his opinion when he came in and he, after initially stating that it was up to me, said that Tuesday, Thursday and Saturday would be more practical – and he is of right of course.

I got swabbed today as I’ve been a bit snotty, yesterday and this morning, and may not have thought anything of it but for another couple of patients coughing last week.  I was told it was nothing that should concern me but we’ll see.

The internet is a wonder thing when it works right – I won’t say how many times I tried to post this last night but it wouldn’t play ball.  Hence me sitting here now having my breakfast in my usual half asleep daze thinking ‘Oh yeah I couldn’t keep my eyes open so I left it!’

I really didn’t mean to go on this much and really just wanted to let you know I was still here and actually feeling pretty good.  I did mean to share this last thing however.  I learned something today.  I learned it as I went for a wee just as B arrived back with my singapore chow mein from across the way.  I whizzed (get it whizzed) to the toilet and in my haste to get to the grub was in ‘wee position’ before I took full account of my surroundings.  In fact I was mid wee.  What I learnt was that if you are mid wee and notice something unpalatable on the floor at the side of the toilet then the natural reaction to flinch away from ‘the something’ kicks in before the reaction to ‘stop weeing’!!!!!!!  Fortunately I had plenty of jim jam bottoms.

*  cba – can’t be a&sed

Still in my own bed

I’ve not managed to wangle a holiday at the Royal yet this week.  There wasn’t a bed available when I rang yesterday morning.  The young lady I spoke to said I should ring that afternoon or this morning.  I said that last time they’d just called me when everything was set up and she said that would be fine – which means I’m not mithering them AND I don’t have to remember to ring!  I know how could I forget but a little bit of distraction on the way to the phone and it’s next Tuesday I’m ringing in!

I do need to ring the dentist tomorrow.  I’ve got a check-up booked shortly but a tooth bothered me about a week ago – only a twinge but today I’ve developed a numb bit on my lip and chin and when I bite down my teeth feel funny.  I don’t know whether this is just me or its the same for everyone,  because I’ve never thought to ask before, but I have real trouble pinpointing where toothache is.  What I mean is the exact tooth and sometimes (not that I get it a lot but I did have a spell of it a few years ago) although the main pain is at the top it seems like the  bottom hurts – maybe that is just me.   I started thinking that I had a numbness in the right hand side of my chin last September at the same time I had the numbness in my thumb and down my right forearm however it disappeared shortly after – as they all did.  Even though the MRI didn’t show up any myeloma lesions in my jaw where the nerve that would cause it is located I just figured it was related however now I’m thinking that maybe it was a tooth infection that was cleared up by the antibiotics I got at the time so I better get this checked out just in case.  I mean how would it look going in for my next lot of chemotherapy and saying ‘I don’t need to get an infection while I’m in as I brought my own’.

In the meantime I got to go to yoga this afternoon (oh, and I had my last two stitches out today) which I can’t refer to as Armchair Yoga today as we actually did more that just the balance standing up – STANDING UP!  It was very nearly exercise – not really but it was as close to exercise as I get.  I would also point out that I was the only member of the group today who was under 60.

And yesterday I made a Buddy.  It needed to be a vibrant Buddy.  It was to be a get well gift for a lady in hospital and as flowers are no longer allowed the gifter (is that a word) wanted something bright to raise the giftee’s (what the heck it matches) spirits when she looked at it.  I mentioned a bright pink and that was acceptable and went with an equally bright green.

I just wasn’t happy with the Buddy’s mouth so I had to unstuff his head and re-do it.  I was much happier with the expression and I think he looks happier too.

I had a little assistant for the Buddy photography session.  My assistant would have liked to get to know the knitted Buddy a bit better.

Lots of Buddies

We’ve had a spate of Myeloma Buddy production going on over the past few months.  If I’m a bit stuck for something to take out with me or just need something small I knit a Buddy.  When I was thinking of posting the pics I realised that I’d never said where the orange Myeloma Buddy army went last year.

The 100 Buddies were ordered by Myeloma UK – orange or rather ORANGE being their corporate colour.  They are available direct from them and are listed in their site shop right here.  They’re also for sale at their Info Days.

While I’m at it there’s also a link to my Buddies in the FUNdraisers section of the IMF site (International Myeloma Foundation that is not the better known but less fantastic International Monetary Fund).

Mmm, wonder what one would look like in fabric?

Other creative spaces are here.

When I went for dialysis today I asked about the results of the 24 hour wee collection from Monday.  Apparently the level of toxins in it that my kidneys had filtered is not yet normal but is going up.  The blood test showed my calcium level is on the low side even though my Calci-chew dose was increased three weeks ago from 2g a day to 4g so the nurse said she’d get a doctor to review it when I went in on Saturday.  

Keep going there’s a giveaway right at the bottom!

Right since Sunday the following things have happened – I decided to do them as a list to aid reading (okay it was really for me so I didn’t have to link completely unrelated points).

♥  We ate tea at a friend’s Sunday evening – well more correctly I pushed my Fusilli Bolognese (sorry Margaret if that breaks any Italian dining etiquette ie, not using spaghetti) around my dish until it looked like I’d eaten a bit and the other bit had been retrieved from under the table after a piece daring leapt from my fork and landed on the new carpet leaving behind a trail of carnage on my T-shirt and trouser leg.  I did sponge it off  – kind of.

♥  I settled down on a settee and didn’t even pick up my knitting – which was commented on yesterday when I was informed I hadn’t looked a bit well then but looked better yesterday.

♥  My temperature Monday morning was 38.1 so I decided to go to the open surgery at our GPs.  And why didn’t I ring the hospital some of you may be asking – or not – but I’ll tell you anyway.  Because it was Monday, Mondays are busy, B is on holiday this week and I’ve managed to sabotage three out of his last four holidays with appointments or impromptu vacations at The Royal so rather than spend several hours there I thought we’d go to our GPs (who you will remember I think are wonderful) in the full and certain knowledge that if it looked anything too iffy they would send me along to the Royal.

♥  We left the house after I had managed to give Bud his ear drops in his correct ear, give him his antibiotic (more on that another time) but was wearing the trousers with the sponged pasta sauce stain, an un-ironed T-shirt and my night time knickers.  WHAT?  Look some people wear the same knickers (well not the same but you know what I mean) night and day, some don’t wear any either night or day {slight hyperventilation} but I like a sensible won’t show you up if you get knocked down by a bus, comfy fitting but not too loose!?!?!, doesn’t display a VPL (visible panty line) pair for the day and a comfier, slightly larger more outlandish pattern – flowers, the odd little bow, frog, little ruched bit (nothing kinky) pair for sleeping in when there is no chance of getting hit by a bus.

♥  I got broad spectrum antibiotics and told to come back if things didn’t get better – and I was informed I was somewhat cheeky when I enquired as to whether the GP had bought herself ‘Top Doctor’ cup (allegedly it was a present from a patient)

♥   Took Bud on short walk with B – napped rest of day so missed out on B taking me for new TV (ours is state of the ark at 17 years old and misses off words at side since most things are now in widescreen)…

New fridge freezer…

as that bowl (which is way nicer in real life) isn’t for decorative purposes but for the leak that it’s had for quite a few months now, and…

a new tumble drier because that muck on the top apparently isn’t going to remove itself!  Okay so it’s really because it’s lost all sense of appropriate heat settings and although it does most on cool it still occasionally does a ‘hot as hell’ setting without warning

♥  No knitting but tidied up crochet Share a Square squares

♥  Tuesday – temp 38.0 but dropped to 37.5ish for rest of day, Bud, B and I had short walk, felt better later in the day

♥  Bud stood in his own poo in the garden and was ever so good at having his paw, washed, washed and disinfected, but was a bit traumatised at having his bum wiped, well it was more of a swipe as he battened down his tail tighter than a submarine’s hatch so I had to improvise (Addendum – this was before we knew it was on his paw!)

♥  Didn’t go to support group as temperature and anything associated with it was mine, all mine I tell ya!  Had been looking forward to it – it was a talk by Blood Pharmacist (you know I mean Haematological Pharmacist but I can’t spell haematological)

♥  Did manage a little bit of knitting

♥  Phoned hospital this morning even though temp only 37.6 and I felt better than Sunday/Monday I felt worse than last night and just not right.  Left home at 9:10.  Got home at 15:45.

♥  By the time my temperature was taken it was 36.9 (for the love of dog), bloods were taken and we were isolated what appeared to be the Marie Celeste ward by which time I felt decidedly better and B put forward that we could go home.  Attendant Health Care Assistant said we could, but did he really want to have to bring me back later in the week

♥  Did a little bit of knitting

♥  Saw junior doctor, and during course of conversation mentioned that it had dawned on me whilst I was sitting there that the way I felt was similar to the way I felt in February when the myeloma numbers jumped up and since it was 31 July the last time my paraprotein was measured she agreed to it being done once we reached matching lingo (serum immunoglobulins) and said she’d chase up this morning’s blood results

♥  Had kip – just to prove I wasn’t faking – B had been asking me crossword clues and I nodded off and then briefly woke up and asked him, to his amusement, what the next one was before dropping off again

♥  Health Care Assistant came to check on us and where things were up to and said that the doc had said that the serum immunoglobulins were measured on Friday so no further test needed today

♥  Doc came back later to say it wasn’t good news and that IGa results were in from Friday and it’d gone up from 0.65 ish in August to 17 something (sometimes don’t you just hate it when you’re right, not always just sometimes) and that my blood counts had dropped a fair bit since Friday

♥  We bumped into the transplant doctor coming out of the lift, who knew where things were up to, and he said that obviously where treatment would probably have been needed to reduce the plasma cell content of the bone marrow prior to transplant it would definitely be on the cards now.  ‘Are they keeping you in?’  Slightly high pitched ‘No’ from me.  Dr S said I’d probably see the consultant on Monday and he’d chase up the MRI request

♥  I take bad news better alone – B was at home when I found out in February that it was back but today he sat and leaned forward with his head in his hands and I had to ask him if he was alright – as did the doc – he told her to just deal with the patient and she (patient) would inform him later.  And when I asked if he was okay while we waited for the lift when he answered ‘I just don’t want to lose you’ I had to fight back tears while entering a lift full of strangers.

♥  Although we didn’t eat out we got drinks and Eccles cakes in the cafe

♥  My Auntie Ann and I were supposed to be going to the Myeloma UK Infoday in Manchester on Saturday but when I asked the doctor if there was any chance I did have an infection I could pass on she pointed out that the bigger risk was to me with how my counts had dropped (although I’m not neutropenic).  So if anyone is reading this who lives close enough to go I have three tickets up for grabs.  Just drop me an email (feresaattenuata@yahoo.co.uk) or leave a comment to that effect and I’ll email you and they are yours – free of charge – well if you do me a little report saying how it went!  Just kidding.  Actually if anyone takes me up on my offer and does a little report I’ll pop in on here AND give them a free Myeloma Buddy.

♥  I also learned this week that CD/TV in the local ads in the paper doesn’t stand for compact disc/television but cross dresser/transvestite – which could get confusing especially if you were trying to stick one on your living room wall!

My crafty entries

Here’s the stuff I’m entering in tomorrow’s Village Show.  You’ll have to excuse the doll’s somewhat un-chaste demeanour – I wanted you to see her underskirt (which is a full one) and her bloomers.  I have to admit I didn’t make her – she is my Auntie Eleanors’s creation.

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Please bear in mind if you comment that I don’t want to read the words ‘over the top’!  I was going to cut it back and save some for next year but then I thought ‘Hey, seize that carp, you might get hit by a bus before then.’

Do you like Myeloma?

“Do you like Myeloma..Daddy?” was the question that came from my four almost five year old son. I was totally caught off guard. One, because he pronounced Myeloma better than most adults, and two, the fact he even knew the word.
His question still has me in a tailspin. You would think the immediate response would be “NOOOOOOO!”…but that was not what came to mind. I am still caught up in this question days later and my thoughts are a little scattered….I just don’t know exactly how I feel about Myeloma. Obviously I wish it would depart from this earth as early as yesterday, but I don’t feel an angery/firey get out of my life now -type response.
Like any bumps in my life I tend to see them as redirection onto a better path and an opportunity to know myself better. I can say that Myeloma has definitely provided both redirection and many opportunities for me to better understand myself and those around me. Don’t get me wrong, I am not “thankful” for the disease nor do I view it as a gift, but I don’t hate it nor do I feel like I am in a “battle” against it. Weird…I know.
To set the record straight…Ocean was referring to Myeloma buddies…NOT the disease. I wish he would have told me that up front before my mind went down this rabbit trail to understand how I feel about my Myeloma. As for Myeloma Buddies….I think they are LEGIT!
Happy Valentine’s Day everyone!
-Phil