Tag Archives: mutiple myeloma

A Non Bare Bear

Darn, as Ernie pointed out I missed a prime opportunity in the title of my previous post when I could have gone with a play on a Bare Bear!  Anyhoo said bear is now fully clothed – well nearly.  Although he looks fully attired his goggles need a press stud and are just tied on and his little jacket needs an open ended zip/zipper.

Oh, and his jodphurs require a bit of white shirring elastic but other than thathe’s fully dressed!  The pattern is again from Teddy Bears: More Than 25 Irresistible Designs for Knitted Bears by Debbie Bliss.

As you can clearly see I got the loopy knitting finished whilst at the hospital yesterday.  I did have to adjust the pattern as keeping to the instructions was only sending me loopy not the yarn.  In fact I also managed to reknit the goggles as the first pair were 12cm/4.76″ short.  And then I ran out of knitting, seriously I had nothing left to do, no book to read, I did write out my Christmas present list again, got about five cups of water (they are very small cups) and went for a wee – which was a feat in itself let me tell you due completely to my choice of attire – and then fortunately my Auntie Ann appeared – but back to my clothing.  

When we have an appointment with a doctor/prof at the clinic I make at least half an effort (although they may disagree) due to the fact that, as you may recall, we go into Liverpool for a meal but when I go to the Day Unit, for treatment or when I’m feeling ruff, I go casual to the point of completely un-ironed in some instances.  So yesterday morning I was all of a do-da – an appointment with the Prof but in the Day Unit – what to wear? Anyhoo, the decision was made for me – I ironed a pair of trousers only to find I didn’t have a suitable clean t-shirt so I ended up wearing a dress with tights.  I also ended up getting two units of blood and let me tell you, if you don’t already know, it is quite a performance dealing with tights while you have a cannula in the back of one of your hands – but I’m getting ahead of myself.

I got there at 10.50am for my 11 o’clock appointment – I was early as B wasn’t involved, my Uncle Ray provided transportation.  I saw the Prof and he asked me how I was.  I said I didn’t feel ill but had been tired – and he said yes I would be because I was anemic.  So I got to have two units of blood – I could have gone back today but whilst I was already there I said I might as well stay plus if I did I’d feel better sooner.

Due to my haemoglobin count (7.6 – normal min for women 11.8), white blood count (2.6 – min 3.5) and neutrophils (1.00 – min 2.0) the next cycle of Revlimid has been delayed.  I go back to the clinic a week tomorrow (11 November) and will, hopefully, start cycle two then but this may be reduced to 10mg every other day or 5mg a day.  On the upside my kidney function has improved again and my PP (I think rather than my IgA – you’d think I’d know definitely wouldn’t you) has gone from 15 to 10! We’ll just need to wait until my next bone marrow biopsy to see if it affects (ie, squashes and stomps on) the plasma cell content of the bone marrow.

My appetite was better yesterday I’d managed half a sandwich for my lunch with a bag of french fries (which are a crisp/chip) and for tea I’d been craving spag bol (which is so much easier to type than spaghetti bolognese).  Due to the tiredness I fortunately hadn’t decided to make this from scratch so B had got a ready made jar to go with some mince. However subtle hints to B on the phone such as ‘Are you going to make the bolognese?’ hadn’t worked so I got home at 9.10pm (hence my Auntie Ann collecting me as B had gone to work) to find the meal still in kit form.  And you know what I did – I made it!

I’m not going to say it was without incident – I ended up with about a quarter of the spaghetti I started with due to a colander and sink incident – but I really enjoyed.

I’d done the mince and the sauce before going upstairs for a shower and realised we had a couple of phone messages.  So I had a quick shower, put the pasta on and phoned one of my friends back and had to do something I rarely do, I had to say I couldn’t stay on the phone long as I was cooking pasta.  When she called round this afternoon she said she got off the phone and said to herself ‘She’s been out nearly all day, she’s not been home long, it’s 10 o’clock at night, did she really just say she was cooking pasta?’ but apparently I looked and sounded a lot better today – totally like someone who could deal with cooking pasta at that time of night!

More creative spaces can be found here.

Well excuse me for being distracted!

B accused me on Friday whilst sitting in the WRVS coffee shop at the hospital of being a bit distracted and not listening to his riveting tale of Pepsi now being in 600ml bottles (look I think it was Pepsi, so okay I wasn’t exactly paying complete attention but let’s face it he was talking about pop* I may have been slightly distracted, in part by the strange array of people walking past, and possibly by something else, some holiday or something, it escapes me just at the moment). Yes Sandy, he works for a company that distributes soft drinks (and alcoholic beverages), I’m hanging my head in shame but it could be worse he could be an arms dealer – I think I’ll look into that there’s probably more money in it and doesn’t affect as many people!

So we’d arrived at the hospital with nearly five litres of suitably camouflaged wee which B transported up to the 10th floor and whilst I’d sauntered over to my have ECG and lung test. Highlights of these two experiences were:

B: ‘You mean we’re taking it (wee) with us on the train?’

Me: ‘Well how did you think it was going to get there?’ Damn, I should have added ‘by PHL’

At cardio/respiratory reception:

Me: ‘Hi, I’m Paula Kilgallon and I’m coming in for my SCT on Monday, I had an ultrasound on my heart two weeks ago but apparently I also need the ECG and lung test.’

Receptionist, who was so lacking in that Friday feeling I dread to think what she looked like on a Monday morning: ‘Well you should have had all three last time but because you only had one’ (somehow making it sound like it was my fault) ‘you’ll need to go back to your doctor and get another referral.’

Me: ‘Oh, okay I’ll just do that then’. Well okay not really I politely explained that I’d been told if I just turned up they’d fit me in – and didn’t point out that since I was the only person other than her in the whole reception area I didn’t think they were exactly swamped.

Anyway I was ECGed and breathalysed very quickly (yes, Ruth, the pads on my lower legs and forearms as well as obviously my chest, we live and learn, fortunately).

B was waiting for me and said I had to go for a blood test, he’d said we’d go back up to 10Z as the queue in phlebotomy is always huge.

Faux pas by my darling husband to the nurse after she asked if I had good veins…

B: ‘You’ll be lucky to find anything!’

Nurse: ‘Oh, are your veins not good? Maybe you should have gone to phlebotomy!’

Me: ‘No, they’re fine. He was just trying to be funny!’ (Note to self – explain to B relevance of good/bad vein homour) ‘Do they have better aim? Apparently they do.

So after the second attempt to get blood as the first one missed, the nice nurse said that since Monday is a Bank Holiday she’d see if I could be clerked in then and I would only need to come in about 20:00 on Monday, yay!

B had been to the toilet and when he got back we nearly had a domestic over the word clerked!

B: ‘So, what’s happening now?’

Me: ‘The nurse is going to see if a doctor can get me clerked in today.’

B: ‘What?’ Me: ‘The nurse is going to see if a doctor can get me clerked in today.’

B: ‘What? See I told you you were distracted, what are you saying, clocked?’

This taking place in front of the nurse who was trying to look busy labelling the blood sample.

Me: ‘Clerked!’ B: ‘Clocked?’

Me: ‘Clerked in!’

B: ‘Clocked on?’ Me: ‘No, that’s what you do at work, CLERKED IN!’

B: ‘I still can’t understand what you’re saying!’

Me: ‘C-L-E-R-K-E-D I-N!’

B: ‘What?’

Me: ‘Booked in!’ Why on earth didn’t I think of that sooner?

B: ‘Why didn’t you say that in the first place who’s heard of the other thing?’

Me to the nurse: ‘Clerked in is the right expression isn’t it?’

Nurse (in a nooooo, don’t involve me kind of way): ‘Well, that’s the one we use.’

Me to B: ‘It means I can come in later on Monday and you can push me out of the car at the main entrance on your way to work like last time!’

B: ‘You’ve no thought for me going to work!’

Now this took place in effectively a store room where the other patient was all of four feet away on the other side of a curtain – it’s no wonder he waved and smiled on his way out the door. When I pointed out that B was maybe not in the best of moods he was apparently fine and dandy and it was me that hadn’t listened to the intriguing tale of pop and that I was the problem.

After finding that the doc had gone on his lunch we went for a coffee/hot chocolate and came back later.

We sat on the little settee on the ‘landing’ facing the key coded entrance to the ward where there was an additional notice, which shortly becomes relevant, saying that due to vomiting and diarrhoea in other parts of the hospital and local community only one visitor per room is being allowed at the comment. Whilst there the ward registrar came back from lunch and stopped to say that the Hickman line would go in 11:30 Tuesday

B: ‘It is worth me coming visiting on Tuesday then, will she be out of it?’ Any excuse!

Doc: ‘No, it’s local anaesthetic. Then on Wednesday the melphalan and then …’

And then B asks: ‘That sign on the door about one visitor at a time surely there must be some flexibility…’

After the doc had run for cover I pointed out to B that these powerful insights along with his patience and understanding personality were the very reasons I brought him with me. B pointed out that the reason I brought him was that no-one else could carry five litres of wee from the station!

* Beth – That’s what we call er… soda – you know I struggled for a translation I kept thinking pop and then corporation pop** and finally arrived at soda

** Any guesses on that one?

A Room with a View

 I started the injections to mobilise my stem cells on Thursday morning and now I’m sitting cross legged in my coral and peach stripped jim jams, just the bottoms the top is plain, you have to know where to draw the line, in my own little hospital room.  I’ve been in less appealing hotel rooms, well bed and breakfasts.  I remember one where the mattress had more peaks than the Himalayas and I refused to take my socks off  even for a shower.  It’s 04:38 and I woke up and couldn’t nod straight back off so I thought I’d take the time to show off my hotel, I mean hospital room, while I enjoyed a coffee and biscuit courtesy of the NHS.  Let’s face it if you’re going to have something wrong with you it might as well be something that gets you an NHS room like this.

 You know what this is…


it’s my light dimmer switch and telephone extension socket.

My reclining armchair and TV

My bed, CD/radio and storage with little mini wardrobe!!!!!!!!!!



My complimentary tea tray, tea coffee biscuits and kettle which are sitting on my  fridge. 

Oh, and this is my view, okay it’s dark but there’s a lot of lights, so there’s a lot of view, apparently its quite a small room but I think I can safely say I prefer a view over square footage. 

Rachel, the lovely nurse,  gave me my Plerixafor injection last night and so this should be kicking my lazy stem cells into action.  Hopefully they aren’t really lazy they just needed a bit of a rest after the initial treatment. 

DisclaimerI know I take the mickey but I do feel the need, unusually for me, to say that I do appreciate we are really fortunate to have the NHS!

Well enough of that, did I say this is my tea tray?