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.’

 

Where’s my medication?

Today we had, in theory, a clinic appointment, Velcade, Doxirubicin and Zometa.  I arrived at the day unit for my blood taken to be told by the very nice receptionist that of all the things listed I was likely only to get the Zometa due to having a clinic appointment and this not leaving the pharmacist enough time to prepare the others if they were to go ahead.

Fair enough I thought.  I did! About half an hour later.  I had thought maybe the Zometa might be a touch too much with everything else but I wanted the others today.  I didn’t want to start Doxirubicin on a Monday and have the hazy red ball, no matter how cute, accompanying me about any business I may feel up to in the week.

As it turned out this isn’t going to be an issue as my neutrophils were too low for either Velcade or Doxirubicin.

Neutrophils – 0.6 from 0.9 (normal range 2.0 – 7.5)

Haemoglobin – 9.5 from 10.8 (normal range 11.8 – 14.8)

White blood cells – 1.7 from 1.6 (normal range 3.5 – 11.0)

However stand by, or rather sit down, to be astounded by this

Platelets – 256 from 66 (normal range 150 – 400)

Yes ladies and gentlemen 2 5 6! 256!

The suggestion of a GCSF injection (granulocyte colony-stimulating factor which boosts neutrophil production – see aren’t I good now including more info for those that visit for my crafting ability) was discussed but apparently an increase, or, in my case, a leap in platelets can precede a neutrophil increase.  So I get to go back on Monday for blood counts with a view to starting cycle 2 next Friday with, if required, the possibility of a GSCF injection earlier in the week.

And today we were really lazy and after going into Liverpool city centre for lunch we got the bus back to the hospital car park for the first time ever.  No, it wasn’t really laziness.  I have a cautionary tale, well sentence, for you.  Don’t wear socks with anti slip sticky bob bits on the bottom with shoes if you intend to walk any distance, they make you whine.  Well they make your feet ache and then you start whining.

 

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.