Happy New Year

Happy 2012! I have to admit I’m not a big fan of New Year’s Eve. I looooooove Christmas and for me New Year pales in comparison. However something this year made me think of the traditions that use to happen when I was younger. We would all go to my Great Auntie Betty’s for Christmas Day and then New Year’s Eve, but New Year would include more friends and neighbours. Just before midnight the men, with me tagging along, would go out the back gate, down the entry (alleyway) and round to the front door. At 12 someone would knock, the door was opened and the New Year let in. This was always done by a man and preferably one with dark hair – Auntie Bet was made up with B for this reason. I don’t remember any of the other traditions actually being carried out but I do remember people talking about things they use to do such as carrying coal, bread, to ensure there was heat and food for the coming year. At our current house I suppose I couldn’t expect B to go out the back door and round the front on his own, let alone carrying stuff, since it would involve several six foot fences.

Anyhoo, back to this year. The three of us spent New Year’s Eve quietly at home. Last year we went to one of our neighbour’s but his lady friend has shingles so I had to steer clear. We went to Auntie Ann’s on New Year’s Day when she cooked a fantastic roast. I ate everyting on my plate (about half/two thirds what I’d usually eat) much to B’s amazement and also causing him to exclaim ‘How come you ate all that but don’t eat all your tea?’ A friend said I should have pointed out that it was three o’clock in the afternoon and not half past nine at night! Bud got his own roast dinner too.

And you won’t believe what happened yesterday. Or maybe you will because I do tend to be slightly accident prone as evidenced last week by me knocking over two full 500ml (roughly a pint) glasses of drink within three days prompting B to ask if I was going to continue at this rate.

Anyhoo, back to yesterday. I’ve been going for dialysis on a Monday, Wednesday and Friday at seven am. B took me Boxing Day and the Wednesday of that week as there wasn’t transport available. Friday I got picked up by a mini bus type ambulance at 6.25am, Monday it was 6.10am and it turned out I needed to be ready not for 6.30 but for 6.00 as arrival time depended on who else they were picking up from where. On Wednesday I was picked up at about 6.20am and everything went fine, I felt quite good, I watched a couple of films and did some crocheting. Then when we were finished I started getting flashing light type things in my eyes suggestive of a migraine so more than anything I just wanted to get home. I managed to get down to the ‘Hospitality Suite’ without incident even though things weren’t too clear. I think you have had to experience these visual disturbances to understand completely, you can still see but not properly – it’s so weird. As it happened the driver was at the desk when I got there so there was no wait. I got on the mini bus and sat as far back as I could so I wasn’t near any bacteria I didn’t know, er I mean people I didn’t know. Altogether there was five of us being transported and I was dropped off first.

This is where it gets a bit gross so anyone with a delicate stomach may want to look away.

My sight went back to normal and fortunately no headache actually materialised. BUT I suddenly realised I felt sick. Now we know that for me ‘I feel sick’ means ‘Pass me a sick bowl immediately because I’m about to make a deposit’. BUT it was okay because I had a poop scoop bag in my pocket just in case of this eventuality. I fished it out and whilst juggling the netbook bag and large bag of crocheting/yarn I threw up. Now I thought that it had all gone either in the poop bag, in the crocheting bag or down the front of my coat so I didn’t even contemplate letting the driver know. It would appear though with the benefit of hindsight that I was wrong. I just relievedly got off the mini bus and flopped into the house, where B took my coat, hat, gloves and scarf and threw them in the washing machine whilst I went for a wash.

However it turned out that the bottom of the paper/board bag I had my crocheting in was er, we’ll go with moist, meaning that some of the vomit must have hit the floor! And I got off without saying ANYTHING AT ALL!!!!! Every time the phone rang today I thought it was going to be Hospital Transport telling me I’d been black balled. B said ‘Why didn’t you just tell the driver?’ to which I responded ‘Because I didn’t even look at the floor!’

Plus with my nature of coming clean with everything I need to explain/apologise for it to someone. Maybe I should start with the girl who sits in the other back seat ‘cos she probably got an eyeful after I’d got off. Ugh – I don’t think there’s much worse than other people’s sick. Usually I hate being sick in front of people, particularly those I don’t know, and at one point in the Royal I spilt bloody (my mouth was bleeding a fair bit) vomit on my bed sheet as I sat up in an attempt to avoid the ‘Hostess’ (catering lady) seeing the bowl of sick. So it’s not a sight I would usually force on anyone.

As it turned out I did feel decidely off for the rest of the day, slept most of the afternoon, was sick again just after I’d had a bath and barely ate any tea but I feel much better today, apart from the guilt.

So, hopefully, I’ll get picked up tomorrow morning and I really hope it’s the same driver so that I can get things off my chest first as last. I mean I’ve only been picked up three times and have already managed to make a mess.

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.