Tag Archives: hospital appointments

Because I’m Worth It!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I’ve been so sleepy over the weekend – well I say sleepy what would be more appropriate is ‘I’ve been so asleep over the weekend’.  We went to the Royal on Friday and I felt okay but by the time we got home I needed a nap, ordered tea, then napped, ate tea, then napped.  Saturday was pretty much the same although things could have been made worse on because at 4:10 or 4:49 (look I’m really not good when I’ve just woke up even if I am seemingly quite awake) I got up – if B hadn’t been in bed (snoring) I would have put a film on and then nodded off but I got up and knit some squares (being collected by one of the nurses on the Day Unit) and then fell asleep about 6:30 until 9:20 so that gave a potentially sleepy day a definite nudge in that direction.

After I’d woke up for the second time on Saturday, I woke B up, rang Auntie Ann to ask her did she want to join us for a meal out later, slept, went out for tea, managed to keep my eyes open until Auntie Ann went home, then had another kip before getting off the settee for a shower and then I had a little nap before going to bed.

Sunday was very much rinse and repeat – except I insisted on going on Bud and B’s walk and it took us an hour and 10 minutes to do about half the usual walk that takes an hour and 20 minutes – but I got some fresh air and we all know that makes you sleepy so guess what I did when we got home – napped!  I woke up for tea and then managed to perk up to answer a friend’s phone call and then I napped again before bed.   If it’s true what they say about beauty sleep I should be a busty, leggy stunner by the end of the week.

One of the things we did pick up at the hospital was these, which according to the NICE guidance notes have a value of £4,365 excluding VAT…

I start taking them tonight.  Tonight as they can cause drowsiness and I so need some more of that during the day.  I’m also on Fragmin injections to avoid a thrombosis and Allupurinol to protect my kidleys.  As I’m not taking dexamethasone, like with the Velcade, I don’t need to take Acicolvir or Septrin.

I’ve said previously that a gauge of my general wellness is how much craftiness I carry out, Chris was horrified to discover last night that I hadn’t blogged since Thursday – as she was of the view that this too is now a similar indicator.

So onto the craftiness I have been up to.  Last Thursday I showed this little pile of body parts…

they are for two teddy bears, however I’m a tad concerned.  I have to admit I have struggled with the odd piece and quadruple checked the stitch numbers several times.  On Friday I wanted something simple so did part of the dressing gown for one of the bears.  I mean the back was basically a square of knitting with a little shaping at the neck.  Let’s have a little lookie at how that turned out…

Yes, that short it is the back and the long bits are the fronts and I didn’t even notice when I knit the pieces together at the shoulder joints!  So I’m not convinced that one of the bears isn’t either going to have a limp or several heads.

I will share more about our Friday appointment at the Royal once I’ve decided which parts are actually fit for polite company.  Oh, it all started off so well, we met Sean and his brother Nigel and then had coffee and cake with Sean. B seemed his usual self despite having had only an hour’s sleep but from then on, and I can only put it down to sleep deprivation, well, let’s just say it’s a good job I don’t blush easily.  Usual service was resumed once he’d had about an hour’s kip in the waiting area of the Day Unit when we went back up there for my Zometa – maybe the snoring helped as well!

Woo foo

A few appointments ago when we had a woo hoo and a couple of WTFs Roo commented it was more of woo foo, so let’s see how today’s appointment went on the woo hoo/foo-omitor.  Oh, and Chris accompanied me whilst B slept it up at home.

Hug each off one of the health care assistants – woo hoo

Prof said I was very intelligent – WOO HOO (Chris restrained herself from commenting that I was a real smart arse)

Prof said he was perplexed – hint of foo

Paraprotein in blood not detectable – woo hoo

Cytogenetic results not in – mmm as I shoulder shrug – as in not that important in the scheme of things…

Plasma cell level from bone marrow sample – 90% foo foo foo foo foo foo foo

Prof showed me the computer screen to show he wasn’t getting confused at his age after we had a déjà vu moment of conversation from our last appointment but in reversed roles…

Prof: ‘It’s 90%.’

Me:  ’90!’

Prof: ’90.’

Me: ‘Hahahahahahahahahahahahahaha!’ Okay, well obviously not that bit, the Prof didn’t laugh last time.

Chris said later that she thought I was possibly the only myeloma patient he saw who laughed at such news but as I’ve said before being miserable doesn’t cure myeloma – correct me if I’m wrong.

So my monoclonal protein level as at 29 July is not detectable yet the plasma cell content of my bone marrow as at 5 July is 90%.  As I explained to B the sample could theoretically have hit a pocket of plasma cells and the rest of my marrow could be as clean as a whistle but that still left a pocket of not 10%, not 20% but 90%!

Prof said that somehow there was a 90% content sitting there inactive – as shown by the still undetectable paraprotein level.

I asked if it was likely that if a bone marrow sample had been taken after my transplant it would have shown the same result and he said yes.

 So where do we go from here?  Another stem cell transplant using my own cells (autologus/autograft) followed by a mini one using donor cells (allogenic/allograft) was recommended.  We’ll discuss this at our next appointment which will be with the transplant doctor.

And a definite woo hoo was getting on the scales and being 2kg (4 lbs) lighter than six weeks ago – it looks like that extra walking is paying off.  Although after my sugar binge yesterday – 500ml of Dr Pepper and almost* the whole of a 200g bag of chewy sweets that might change.

* I forced some (one or two) on B and Bud so I couldn’t be accused of consuming the whole bag but even so B was heard to say ‘Have you eaten ALL those?’ – mind you I think he might have been talking to Bud.