My Left Hand

Last week I sat in my appointment with the Medically Trained People and when I was asked the question “how is the neuropathy?”, I responded with “it’s nothing, nothing like before, in fact, I do not need to discuss it with you, so it is not an issue right now“.

Now, I do not mean to speak ill of the people I love, but I am a fool. A big old plonker. I tempted fate and now fate is holding my left arm hostage.

For those of you wondering what the heck ‘neuropathy’ is and what it means for me, then wonder no more… http://ejbones.wordpress.com/2012/11/19/cillit-bang/ I was preoccupied with this particular side effect for quite a while and somehow, I get the feeling, that I will begin to dwell on it once again. Do you know how I know this? It’s because I have a left arm.

For the last week, I have been constantly aware of the fact that I have a left arm. Intermittently, I am aware that I have extremities on the left hand side of my body, but it is the arm and hand bearing the brunt of the Velcade madness. If one is lucky, they have a complete set of limbs, but I bet during the course of a normal day, you do not think about your limbs. They are just there and they do their job. Velcade makes me know that I have limbs. In everything I do and everywhere I go, I am accompanied by them and a growing sense that I want to rip them off. Obviously, I will not rip them off; My Myeloma is enough to contend with at the moment thank you.

One Medically Trained Person told me that the side effects from the Velcade would be eased by the Thalidomide. This pleased me. However, since then, two Medically Trained People have told me that the Thalidomide enhances the side effects and thus it is super duper important that I report any changes to them. So… Helpful. They all agreed that the symptoms will get progressively worse the more injections I have, so I have concluded that… Hang on, my left arm just wanted to say “hello”… where was I? Yes, I have concluded that I will monitor the side effects like I did on PADIMAC. My dose was reduced after three cycles on PADIMAC, I wonder whether I will be able to make it to the end of my second cycle before that happens now. Worst case scenario is that I have to start a new treatment, if the neuropathy becomes unbearable. We, by we, I mean my arm and me, do not want that to happen.

I know my side effects are not that bad when compared to what other people experience. I can still do up my buttons and I do not have constant tingling in my fingers and toes. What I have is, dead arm. If it is not dead, my arm is morbidly obese weighing in at 100lbs and it is a chore carting that imaginary weight around with me everyday. My arm is also fond of the dull ache, correct, constant dull ache. I have a left arm. When I am sitting still or lying down all I am aware of is my arm. Arm, arm, arm, I have an arm, it is on the left hand side of my body, arm, arm, arm. Whilst I may not have constant pins and needles, it is very easy for me to get them. If I hold my phone the wrong way in bed, then that’s it. Needles and pins, pins and needles. I have an arm and it wants to wake me up.

Time will tell… I have managed it before and I will manage it again. In the meantime, my arm and me wish you well.

EJB x

Get Well or Die Tryin’

Where to start?  The beginning is always a good place.  So, when a man and woman love each other very much they… Just kidding.  Let’s start with…

Thursday – Chris and I arrived at the Royal to ‘Are you in the diary?’.  ‘Yes, the myeloma nurse’ who I’d spoken to on Tuesday ‘booked me in with the other receptionist.’ We took a seat and shortly after got called through by one of the nurses who said ‘So you’re here for blood tests for tomorrow’s appointment?’

Me:  ‘Well no, I’m here to see a doctor about the numbness and do I have an appointment for tomorrow?’

Nurse:  ‘I’ll just double check with receptionist.’  On coming back ‘Yes, 10:10.  Do you want to wait to see a doctor now since you’ll be seeing the consultant tomorrow – more knowledgeable that’s why their paid the bigger bucks.  It’s up to you.’

So after having bloods taken we went into the city centre where Chris did a little shopping and we dined Zizzi’s – as they do Chris’s favourite ever meal Casareccua Pollo Piccante and I had good ole Spag Bol (or rather Spaghetti Alla Bolognese).

Friday – I was unsure as to who I was seeing at clinic and when one of the health care workers checked with the myeloma nurse, who was a bit exasperated (not with me) that I’d not managed to see a doctor on Thursday after making all the arrangements for a senior doctor to see me, it turned out our appointment was with one of the transplant doctors and the bone marrow transplant co-ordinator to discuss the prospect of an allogenic (donor) transplant.

We were in there an hour and 20 minutes, possibly because a big chunk was taken up with altered sensation talk.  Along with my right forearm the pad of my left thumb and the right side of my chin now feel odd and I still have, intermittently, the pain in the crown of my head.  Straight after the appointment I got some free x-rays on my head and neck (skull and cervical spine to the more technical amongst us) and Dr S did a request for some MRIs.

When we got to the transplant bit Dr S explained that the role of allogenic transplant in myeloma has no hard and fast rules.  It is neither proven or unproven as THE way to go however, given the way things had gone so far for me, without giving a donor transplant a whirl the prognosis was very poor (he did also say really poor at one point and hey, overall both are better separately than together – really very poor).

Last appointment the Prof had mentioned another autologus (from me) transplant and then a mini allo (from some random stranger) transplant.  However Dr S said that another auto couldn’t really be considered for two reasons – he could almost guarantee I wouldn’t produce any cells to harvest (we had trouble last time and there’d been the subsequent melphalan for the transplant last year) and with the plasma content of the bone marrow trephine being 80%-85% (the Prof must have rounded up to 90%) that was a whole bunch of myeloma cells to potentially give back.

As my paraprotein is zero but my bone marrow plasma cell percentage is 85% and my free lite chains (not something I’ve paid any attention to in the past) haven’t been measured since February Dr S thought it worthwhile to count them now in case the myeloma has mutated and stopped producing a full measureable monoclonal protein – the full one is made up of a heavy chain (IGa in my case) and a light chain (mine is Lambda).  In fully secretary myeloma the full proteins are measured and known as paraprotein, M-spike, PP, M-protein.

In some people however only the light chain is produced and having no accompanying heavy chain to bond with it is not measurable using the regular test that picks up only full monoclonal proteins.  However since the advent of a way to measure these free (unattached and possibly flirty) chains the number of patients that show up as truly non-secretary (eg, not measurable through blood or urine) has dropped to 1% or 2%.  Everyone, with or without myeloma, produces excess free lite chains (maybe in case one of the full proteins gets divorced) but an inordinate amount in someone with myeloma would be indicative of active disease.  So I had blood taken to check out the number of loose lite chains cruising around without a partner.

I also had a blood sample taken for tissue typing (HLA).  Apparently there are 10 potential pairs to match – 10 is good, nine is okay, eight is do-able but not ideal, seven and below are non starters.

The other thing that would need to be looked at is reducing the 85% plasma cell content before transplant.  It may, hopefully, be sitting there inactive at the moment (freelite test pending) but to transplant donor cells at that percentage would be like giving the myeloma cells a chance to claim permanent squatters’ rights before the donor cells have fully moved all their stuff in and made themselves at home.

With regard to the transplant itself if we KISS (Keep It Simple Stupid) the figures are – 1/3 kark it as a result of the transplant or complications arising there from, 1/3 relapse and ultimately pop off because of the myeloma and 1/3 go on to have a long remission.

As we needed to go to my Auntie Ann’s on Friday if I were to see her this weekend (she was going to London Saturday/Sunday to watch Saints vs Harlequins) I didn’t get my lunch out – well not fully, we ended up with our first ever Subway Subs eaten in just opposite the hospital.

Saturday – Letter arrived telling me that I had an appointment on Friday!  I had a slight temp in the morning of 37.3 along with a bit of a headache.  Mid afternoon a friend with myeloma had rang to say there was a local show in aid of Myeloma UK by a young lady in memory of her mum, he’d just seen details of it in the local paper and him and his wife were going.  About an hour later, by which time I’d persuaded a reluctant B that he’d really like to go, I started feeling a bit ropy and my temp went up to 37.8.  So needless to say we didn’t make it to the show – not least because I didn’t want to share anything I may have acquired, because I’m mean like that.  I felt somewhat better after a cool bath and some painkillers, played a computer game with B and then started feeling ropy again and had a kip – very little knitting got done, the volume of production of which acts as a wellness barometer.

Sunday – Temperature this morning 37.3, after paracetemol 36.9, generally felt okay, tired, slightly headachy but okay.  Then at 10:00, the time I’d been instructed to wake B up, I started feeling decidedly off, got up from the desk to wake B and felt sick.  Shortly after, after getting B to encourage Bud to get on the bed with him so I had the bathroom to myself I parted company with the few things I’d consumed in the two hours and a bit hours I’d been up.  How is it though that one and a half cups of coffee, curcumin tablets, a calichew tablet and probably one digestive biscuit (I got two out but shared with Bud) assume the size of a family bucket from KFC when they make an encore appearance?

Speaking of Bud, he’s been having ear drops administered since Wednesday, reluctantly mind but not too badly.  This morning, as he got all excited in a ‘Please don’t stick anything else in my ear – I’ll be really, really good if you don’t’ way and after enticing him in with the treat he would get once they were in – I PUT THEM IN THE WRONG EAR!

We’re supposed to be going to a friend’s for tea tonight so I’m going to take it super easy this afternoon as I HATE to miss out on anything particularly if the missing out is myeloma related. Mind you, if push comes to shove I’m sure she’ll let me lie down on her settee – I mean, it wouldn’t be the first time and it gets me out of even contemplating cooking.

Scrappy Squarey Doh!

In answer to Fiona‘s question from yesterday as to ‘WHAT HAPPENED’ with the m-i-l and B at the doctors.  I didn’t know at the time I popped it on my blog as their appointment was only 16:00 so I was on tenterhooks as to the outcome. Well the GP ‘lol’ed at the note, and then B asked for it – so I was confronted with B extracting the note from his pocket and reading out ‘Bernard has the retention quality of a distracted three year old unless it involves pretty women.’  To which I said ‘Hey it could have been worse I was going to say Page 3.’  Needless to say it was the running theme of numerous comments between then and him going to work.

With regard to the m-i-l, my behind is safe from being exposed to shoppers, as the ‘fungal infection’ was a just a big fat nail that needed filing.  {smug expression}

So to my creative space this week – it’s a bit of a tip, but better a creative mess than neat un-productivity (or something like that).

On the ironing board is a backing for a quilt whilst on the window ledge is 83 Share a Square squares…

Which brings me up to 149 with the total requested from any participant being 150.  I had a bit of trouble with my 150th.

Its one and one quarter rounds short of a full square – I must have been over generous with the tails on the last batch.

Fortunately I found this novelty yarn and with some creative usage (and a tail of about two inches left of it – phew) I managed to finish square 150.

The quilt backing is for some scrap quilts I must have started at least three years ago.  I did finish the top for one…

but since I had all these left from dresses I’d made years before (my Great Auntie Bet always told me to save excess material just in case the garment needed a repair in the future – what I don’t know – but she was alive during WWII rationing and so on numerous occasions was able to show me that a pattern positioning was wasteful and if I did, this, that and that I’d have plenty left over) and since they are in the main lovely crepes I’d hung onto them, even past the expiry of some of the dresses.

All I managed to do yesterday was fill the 3′ x 4′ backing with pieces…

Yes I know they need a serious pressing but they have been screwed up in a box for a long time.  I thought if I could get them finished this weekend they could go to South Africa with the other stuff I’ve given to our GP’s receptionist.  We’ll see.

I have an appointment at the Royal this afternoon regarding the numbness in my forearm, that’s still there, and I also have a numb bit on the right side of my chin and an intermittent numbness to the pad of my left thumb!  I’m going with a friend and I forgot to ask if there’d be eating out involved.  Doh – I must get my priorities right!

Other Creative Spaces can be found here.