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.