Monthly Archives: October 2010

Correct Blood Clinic Appointment

Well we made it to the blood clinic on the right day, right time and right date and three hours later we left with the following information…

They were short on doctors so there was a bit of a wait!

My PP level is still a big fat lovely ‘0’.

The pain I’ve been getting in my hands, which started as a fat fingers feeling in a morning but has now localised as a pain in my wrist, is a joint pain not uncommon following SCT.

I’m slightly anemic – but this seems to be my level.

That, and I was surprised I didn’t know this, we all have a joint where the sacrum meets the pelvis and this is the area where I get the most discomfort.  It was a little bit tender when pressed by the very nice doctor, who remembered us from meeting us once before transplant – they either keep comprehensive notes – he works nights, she knits or for some reason we are memorable – mmmmm no, it was a different doctor we had a minor domestic in front of over the sick note. The doc didn’t consider it to be at any risk of a pathological myeloma related fracture but if it the pain/discomfort got worse I could go back before my next scheduled appointment.  Plus I answered correctly to all questions relating to whether I had any pins and needles, tingling and full control of bodily functions – moving swiftly on…

That I have some damage at T11 (well I assume – I wrote down D11 but can’t find one on a chart) and a lorra, lorra (well we were in Liverpool – think Cilla Black) dots to my pelvis, but these will fill in eventually.

That too many x-rays aren’t good for you.

Long term use of paracetamol and codeine once or twice a day is acceptable.

We go back in 10 weeks (it would have been eight but Christmas got in the way) purely because of the pain/discomfort – so we haven’t yet made it to B’s three month target!

There is a plastic skeleton in John Lewis in the Kiehls section which was able to bring to life the sacrum joint – beyond the doc’s pen drawing on the back of my appointment sheet – well it brought it to life for me, B stood there attempting to look like he wasn’t with me as I was obviously some sort of pervert.  I’m not too sure why they have a skeleton (no, it’s not for Halloween, I have noticed it before) as they sell skin care products!

The Tavern & Co mexican in the city centre is worth a visit.  I had vegetable Texas chilli and B had blackened chicken!

And the final thing we found out is that if Buddy is left on his own in the garage/garden for nearly seven hours he will attempt to chew through the kitchen door frame in well, I guess the opposite of an escape bid!

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Creative Space – More Crocheting

It would appear, after doing all the Share A Square squares, that I have picked up the crocheting bug.  My current project is a cushion cover – it is of course yet to have the pad added hence the flatness not normally associated with comfy cushions and still needs buttons.

I was really good and used some Rowan Cotton Glace that I had lying around.  I think it was in a kit I was given from my local wool shop, ages ago, because I know I have never actually bought any Cotton Glace.  Maybe if I can’t remember exactly where the yarn came from I have too much!  Nah – crazy idea!

Let’s get Moribund

I don’t know who he is or what he did but let’s get him anyway!

A few weeks ago I didn’t have armchair yoga on a Tuesday so I went so I went to Liverpool with a friend.  Pat commented when we got back to the car (no, of course I didn’t drive to the centre of Liverpool I drove us to the station) that B hadn’t phoned me.  He has this habit of ringing whenever I am out – he has been known to track me down via friends’ husband if I am not answering my phone to ask really, really important questions like ‘What’s the meaning of life?’. Okay it’s more like ‘Do you want your jim jams washing?’, ‘What day is it?’ that kind of thing.  However on this particular day I had been out of the house for nearly seven hours and when I checked my phone, which was in the car, no missed calls.

So shortly after I got home B asked for a hug – altogether now awwwwwwwwwwwww!  Turns out he’d had a bit of cry whilst I was out because he had opened a note I did back in March ’09.

Before I was dx’ed with MM the previous thought was a slipped disc for which I would need an op.  We had the tests at a private hospital where a friend’s brother in law had had an op and started to come round during the procedure which resulted in a free ambulance ride to the local NHS A & E.  So needless to say I was a soupson apprehensive.

Now I do like being in control organised so after the confusion that reigned at my father in laws funeral a few months earlier I wanted at all costs to avoid this at mine!  The m-i-l didn’t know which songs too choose, which verses, psalms all in front of an extremely odd priest who didn’t help. Now I know as a non-believer I may seem slightly biased but even one of B’s Aunts who is a regular church goer was less than impressed with him.  No-one knew where the donations should go, which flowers and a lot was about what other people would think of stuff.

So the day before we went to get the result of the MRI I did a note for Bernard and popped it in an envelope and sealed it.

I detailed who to tell with contact numbers, who to ask to the ‘fun’eral, what they should wear (anything they wanted), where to go for food after (two pubs near the creamatorium I’ve never actually been to but, hey, I won’t be eating so it doesn’t matter if the food sucks – they’re convenient).

The only flowers would be stargazer lilies from B as I had them in my wedding bouquet and I just LOVE the scent.

My wool and material stash would go to my Auntie En, as would my sewing machine if my Auntie Ann didn’t want it.

A few other bits and bobs, including a tiny bit of slushy stuff.

The donations, and here’s something I may wish to reconsider to include a myeloma charity, would go to WSPA and Dr Hadwen Trust.

The music would be 4am forever by Lost Prophets on the way in and When you were young by The Killers on the way out.

On that Tuesday B had decided 18 months after I’d written my list, and for no real reason, that he would open it and it upset him a little but I’m glad I did it because now I know that if I get hit by a bus tomorrow (which is unlikely as it is a work day so it would need to crash through the back bedroom first storey window) I get the ‘fun’eral I wanted and B doesn’t have to fret over wearing a black tie!

 

 

 

Hair Today

How you know you have a full head of hair of a reasonable length –

Children no longer stare – girls when it was bald and boys about yay big… ooops hand gesture – about 8 to 10 when it was a number one (ie, there but very, very short).  B would chuckle and I would turn round to find a small boy or boys (in the case of two brothers when one nudged the other to look) staring.

Obviously a little confusing – ‘Why has that woman got a skinhead?’

And you no longer hear conversations like this…

Mum:  ‘…because some women don’t have hair!’

Son:  ‘But you’ve got hair!’

You have longer hair than the short haired furry animal you acquired.

You have to wipe it twice with the towel to get it dry.

You can feel the wind in it.  This feels odd the first time – you have to be walking into the wind but you can still feel it in your hair rather than a draught on your head.

However the one undeniable confirmation that you have hair is when, after months of getting up and getting dressed to go out without giving your hair a second thought you happen to glance in the mirror before you leave the house on day and… you have bed hair.  It may have only been five strands sticking out funny the first time but it was bed hair!

 

 

Dates

When I did Friday’s post I had to check the date I started back at work.  Now I would have thought, even allowing for things like going upstairs for the shopping list for B and coming back down with the book I needed to write it, that I would have remembered such a momentous date, and then I realised… there are so many dates to remember when you get myeloma you suddenly have lots of dates to remember the day of diagnosis, the date you get told you don’t need any more chemo (although I did get a two for one there as it was also the date I ended up in hospital with shingles), stem cell harvests, stem cell transplant, the day of complete remission.

However fear not I have found a use for all these additional special dates.  When you fill a form in in a restaurant and they ask for a special date (so you get free vouchers) you have so many to choose from.

‘Mmm well our wedding anniversary is November but that’s cold so let’s put my stem cell transplant date as that was May and the weather will be better for a trip out!’

 

Yesterday’s Goo and Today’s Blood Clinic

The contents of the plastic bag yesterday started off as a Lush Massage Bar – just like this one…

Wednesday night after work I had a bath something I have been doing more and more often recently as my back has been bothering more than ‘normal’.  Possibly due to playing with Buddy and sitting at my desk working for a living.

The job I went back to on 23 August is typing residential property valuations and surveys via the internet from home – a doddle, well at least according to B it is – since he has a ‘proper’ physical job.  However I went back on full time hours (37.5) using outstanding accumulated holidays to take one or two days off a week.

‘No’ I said to my sister in law ‘it won’t be too much.  I don’t need to do a few hours a day at first and build up.  I’m taking WHOLE DAYS off instead.’  Said whole days however are used for yoga and hospital appointments which invariably include lunch and some shopping.  A missed yoga appointment being spent at home with double glazed unit installers and keeping Buddy out of the way and then tripping off to a friend’s when B got up – ohh, and after standing on a shard of glass – which later become a real pane, I mean pain!  (Sorry, couldn’t resist.)

I have found I am much more easily overwhelmed, I don’t know if that’s the right expression, it may be better explained I am less able to multi-task and am more forgetful.

I do lists – I have always done lists – but this doesn’t help – yes I know, how can a list not help, its there in black, blue and maybe even pink in a notebook but as was the case with a family and friend’s birthday in September (within days of each other) I remembered, I forgot, I remembered and wrote it down, I kind of ignored my reminder, I forgot – about a week and a half later they both got cards.

I also seem to have less time to do things – other than work!  I finish work at 18:00 or 18:30 (if I’ve had a acupuncture appointment) and then I get tea, have tea (or dinner if you’re that way inclined) and suddenly without having sat in the settee watching something crappy on the telly – it’s bedtime!  I then struggle to get up in a morning, I’ve never been a morning person, but I now seem to need more than 8 hours sleep.  However, and it is fortunate I work for home and I trust no-one from work is reading this, I have fallen asleep at my desk whilst typing more than once – you know when you just can’t keep your eyes open and if you were sitting comfortably you’d soon be dribbling out of the corner of your mouth for hours except I’m sitting with my fingers on the keyboard whilst my head lolls about like my neck’s made of rubber. Oh, and there was the Friday morning I overslept (as B got in really early – I wasn’t getting up as he came to bed) and it was 9:32 when I woke up.  Fortunately working from home meant that it was only 9:35 when I logged on.

All this sitting has also had a bit of a detrimental affect on my back which was compounded by having stood on the glass shard which produced a limp and, after having had a poke about unsuccessfully myself (because it was a sod to get to) and trying drawing ointments, I had to trust B with my foot and a sterilised sewing needle!  After three weeks of limping on and off (I know I should have done something about it sooner but I had thought I’d gotten it out myself) and sitting at my desk I have it on good authority that I looked, when I first got up from my chair, like I was auditioning for a part in a remake of Planet of the Apes – not though as any fluff headed heroine but General Urko!

I do sometimes feel at the best of times like I’m walking like I’ve had a bit of an accident after sitting in restaurant chairs for any length of time.  I have however quizzed B over this and he assures me that I still manage to pull of working ‘normally’ faultlessly.

So after all that, back to the ‘goo’, Wednesday night I went to have a bath and remembered that we got a free massage bar from Lush one time.  I had used it once but found it needed warming.  Hey, I thought, I’ll pop it on the towel rail whilst I have my bath and it will be just right for rubbing on my aching back.  Thursday afternoon I wondered what the bag of ‘goo’ was on the rail!

So far I haven’t forgotten anything too vital – the house hasn’t caught fire (although I did once switch the grill on instead of the oven), I have always come back from walking Buddy with Buddy (although on a few occasions we have had to go back for the poop scoop bag I’ve hidden in some bushes if Buddy has ‘gone’ shortly after starting the walk), I remember to lock the doors at night (actually once I’ve ACCIDENTALLY – yes it was! – bolted the garage from the inside which meant B couldn’t get in that way) and then today we went for an appointment at the Royal at 10:30.  I had had my blood taken last week, when I went for my Zometa infusion, so we thought it would be a quick appointment and it was.  It turned out that we were early, a WEEK early!

What can I say?  I got the time right and the right day of the week, just the wrong week.  So B gets to have two hours sleep next Friday morning as well – he’s thrilled!

Creative Space Thursday – Halloween Buddy

Since it’s very nearly Halloween my Creative Space this week contains a suitably knitted Myeloma Buddy…

This is also sitting on my desk…

Bet you can’t guess that it is/was!

I’ll let you know tomorrow, if I remember – which in the case of the above I didn’t which is why it now looks nothing like it started off!

You can see other Creative Spaces here which  may or may not include melted things.