Keep going there’s a giveaway right at the bottom!

Right since Sunday the following things have happened – I decided to do them as a list to aid reading (okay it was really for me so I didn’t have to link completely unrelated points).

♥  We ate tea at a friend’s Sunday evening – well more correctly I pushed my Fusilli Bolognese (sorry Margaret if that breaks any Italian dining etiquette ie, not using spaghetti) around my dish until it looked like I’d eaten a bit and the other bit had been retrieved from under the table after a piece daring leapt from my fork and landed on the new carpet leaving behind a trail of carnage on my T-shirt and trouser leg.  I did sponge it off  – kind of.

♥  I settled down on a settee and didn’t even pick up my knitting – which was commented on yesterday when I was informed I hadn’t looked a bit well then but looked better yesterday.

♥  My temperature Monday morning was 38.1 so I decided to go to the open surgery at our GPs.  And why didn’t I ring the hospital some of you may be asking – or not – but I’ll tell you anyway.  Because it was Monday, Mondays are busy, B is on holiday this week and I’ve managed to sabotage three out of his last four holidays with appointments or impromptu vacations at The Royal so rather than spend several hours there I thought we’d go to our GPs (who you will remember I think are wonderful) in the full and certain knowledge that if it looked anything too iffy they would send me along to the Royal.

♥  We left the house after I had managed to give Bud his ear drops in his correct ear, give him his antibiotic (more on that another time) but was wearing the trousers with the sponged pasta sauce stain, an un-ironed T-shirt and my night time knickers.  WHAT?  Look some people wear the same knickers (well not the same but you know what I mean) night and day, some don’t wear any either night or day {slight hyperventilation} but I like a sensible won’t show you up if you get knocked down by a bus, comfy fitting but not too loose!?!?!, doesn’t display a VPL (visible panty line) pair for the day and a comfier, slightly larger more outlandish pattern – flowers, the odd little bow, frog, little ruched bit (nothing kinky) pair for sleeping in when there is no chance of getting hit by a bus.

♥  I got broad spectrum antibiotics and told to come back if things didn’t get better – and I was informed I was somewhat cheeky when I enquired as to whether the GP had bought herself ‘Top Doctor’ cup (allegedly it was a present from a patient)

♥   Took Bud on short walk with B – napped rest of day so missed out on B taking me for new TV (ours is state of the ark at 17 years old and misses off words at side since most things are now in widescreen)…

New fridge freezer…

as that bowl (which is way nicer in real life) isn’t for decorative purposes but for the leak that it’s had for quite a few months now, and…

a new tumble drier because that muck on the top apparently isn’t going to remove itself!  Okay so it’s really because it’s lost all sense of appropriate heat settings and although it does most on cool it still occasionally does a ‘hot as hell’ setting without warning

♥  No knitting but tidied up crochet Share a Square squares

♥  Tuesday – temp 38.0 but dropped to 37.5ish for rest of day, Bud, B and I had short walk, felt better later in the day

♥  Bud stood in his own poo in the garden and was ever so good at having his paw, washed, washed and disinfected, but was a bit traumatised at having his bum wiped, well it was more of a swipe as he battened down his tail tighter than a submarine’s hatch so I had to improvise (Addendum – this was before we knew it was on his paw!)

♥  Didn’t go to support group as temperature and anything associated with it was mine, all mine I tell ya!  Had been looking forward to it – it was a talk by Blood Pharmacist (you know I mean Haematological Pharmacist but I can’t spell haematological)

♥  Did manage a little bit of knitting

♥  Phoned hospital this morning even though temp only 37.6 and I felt better than Sunday/Monday I felt worse than last night and just not right.  Left home at 9:10.  Got home at 15:45.

♥  By the time my temperature was taken it was 36.9 (for the love of dog), bloods were taken and we were isolated what appeared to be the Marie Celeste ward by which time I felt decidedly better and B put forward that we could go home.  Attendant Health Care Assistant said we could, but did he really want to have to bring me back later in the week

♥  Did a little bit of knitting

♥  Saw junior doctor, and during course of conversation mentioned that it had dawned on me whilst I was sitting there that the way I felt was similar to the way I felt in February when the myeloma numbers jumped up and since it was 31 July the last time my paraprotein was measured she agreed to it being done once we reached matching lingo (serum immunoglobulins) and said she’d chase up this morning’s blood results

♥  Had kip – just to prove I wasn’t faking – B had been asking me crossword clues and I nodded off and then briefly woke up and asked him, to his amusement, what the next one was before dropping off again

♥  Health Care Assistant came to check on us and where things were up to and said that the doc had said that the serum immunoglobulins were measured on Friday so no further test needed today

♥  Doc came back later to say it wasn’t good news and that IGa results were in from Friday and it’d gone up from 0.65 ish in August to 17 something (sometimes don’t you just hate it when you’re right, not always just sometimes) and that my blood counts had dropped a fair bit since Friday

♥  We bumped into the transplant doctor coming out of the lift, who knew where things were up to, and he said that obviously where treatment would probably have been needed to reduce the plasma cell content of the bone marrow prior to transplant it would definitely be on the cards now.  ‘Are they keeping you in?’  Slightly high pitched ‘No’ from me.  Dr S said I’d probably see the consultant on Monday and he’d chase up the MRI request

♥  I take bad news better alone – B was at home when I found out in February that it was back but today he sat and leaned forward with his head in his hands and I had to ask him if he was alright – as did the doc – he told her to just deal with the patient and she (patient) would inform him later.  And when I asked if he was okay while we waited for the lift when he answered ‘I just don’t want to lose you’ I had to fight back tears while entering a lift full of strangers.

♥  Although we didn’t eat out we got drinks and Eccles cakes in the cafe

♥  My Auntie Ann and I were supposed to be going to the Myeloma UK Infoday in Manchester on Saturday but when I asked the doctor if there was any chance I did have an infection I could pass on she pointed out that the bigger risk was to me with how my counts had dropped (although I’m not neutropenic).  So if anyone is reading this who lives close enough to go I have three tickets up for grabs.  Just drop me an email (feresaattenuata@yahoo.co.uk) or leave a comment to that effect and I’ll email you and they are yours – free of charge – well if you do me a little report saying how it went!  Just kidding.  Actually if anyone takes me up on my offer and does a little report I’ll pop in on here AND give them a free Myeloma Buddy.

♥  I also learned this week that CD/TV in the local ads in the paper doesn’t stand for compact disc/television but cross dresser/transvestite – which could get confusing especially if you were trying to stick one on your living room wall!

Don’t Woo Hoo in Tesco

‘Are you on your own?’ asked the Prof.  

‘Yes, this is the first clinic appointment Bernard has ever missed.’ I said, thinking do I need someone with me?

After B asking about my paraprotein level he missed being told the news. Although I don’t yet have my PP figure, my IGa which was 18 on 11 February is now 0.44!  WOO HOO.  Although I didn’t feel so much like woo hooing by the end of the conversation as I ended up a bit dazed and confused. 

I heard once that a good number of patients either do not remember or misinterpret the information supplied by their doctors.  I have never considered myself one of these, I mean I take a notebook to jot down pertinent points for goodness sake, however this is what I remember the Prof saying…

We met before when I graciously acquiesced over the steroids.

These are two medical students from Hong Kong, where I go to teach sometimes.  Do you mind if they sit in?

Can I call you Paula?  I feel old enough to be your father.

You’ve tolerated the medication well

This is your IGa (swivel of computer screen).

Do you have any brothers or sisters?

We will have put you on the international donor register.

You will see me from now on.

I propose two further cycles of Velcade and Doxorubicin but over four weeks instead of three so you will get an extra rest week and then a donor transplant.

WTF?  No, that was me not him and I didn’t actually say it out loud as such but it did surprise the sass out of me briefly, although I managed to ask if the students reported back on him when they got home.

What did you think would happen?

I’d have eight cycles of Velcade and if that worked we’d leave it alone. (Don’t trouble trouble as a friend says.)

In view of your age it would be wrong of me not to mention a donor transplant.

WTF? – again!

There is no point doing a second transplant with your own cells in view of the results of the first one.

You will/should have a donor stem cell transplant.

Ultimately though it is your decision.

I’ll see you in four weeks.

And although I did have my mocha and Eccles cake alone I got to enjoy the conversation of two elderly ladies at the next table – apparently one of their friends had paid £1,000 for a porcelain sink over part of which she now permanently drapped a tea towel so it didn’t get damaged and it was nearly handbags at dawn over who had the bigger house – and B arrived in time to take me for a late lunch.

Oh, and B decided he’d like to treat himself to a bag of fresh cookies from a little Tesco on the way back to the car.  They didn’t have what he wanted so as he was selecting I suggested he may want to go wild as we should be celebrating and woo hooed a little bit too loudly for the man further down the aisle who didn’t stop staring at me until I was past him.

 

 

 

Blood results and a dodgy chicken

Off we went to the Royal on Friday for the latest blood sampling.  It was bedlam.  After a relaxing hour away from the waiting room getting a coffee we came back to find it bursting at the seams!  An announcement informed us they had no ICE, well that’s okay we just had a hot drink, unfortunately it turned out not to be so simple and ICE was in fact the computer system so they had no blood results without someone physically going to the lab to get them.  As an old boss used to say ‘Computer ARE fantastic WHEN they work!’

Now I don’t mind waiting that much (B on the other hand is another story), once I’ve established that the strangers near me don’t appear to have anything contagious or smell I’m quite happy to get my knitting out!  We weren’t actually there that long but didn’t get to see a Professor, no Professor – I feel a strongly worded letter coming on!  We saw a young doctor who we had seen once before and who despite being hounded and harassed several times during our time with him and apologising profusely for this put in a sterling performance when faced with my questions and only once came close to putting his head in his hand to regain his composure!

Soooooooooooo the good news is that I am quote ‘in complete remission’.  I am in as good a position as could be hoped for at this stage after transplant.  (He did used this expression last time we saw him but I guess you just can’t hear something like that too much although I think he may be slightly superstitious as he did touch his head!)

HB – 11.9

Platelets – 240

WBC – 4.7

Para protein – 0.0!

However I am immunosurpressed (I don’t think you can tell by the way I walk) and it is too soon to tell if this is a temporary result of the SCT or a permanent effect of the myeloma – so I’ve told B that this means I can’t go anywhere near his mum’s tea towels!  This could explain the cold I’d had for ten days at that point but the doc was satisfied that it was getting better.

B commenced our round of questions with

‘So can we come back in three months now?’

Doc:  ‘Well eight and then we’ll see.’

So we go back in eight weeks to see the doc but for the blood test one week before so the PP levels are up to date.

However last time we went I raised the subject of Zometa and its anti-myeloma affects.  The Prof said it was up to me but I should consider the downsides of inconvenience and potentially  more damage to teeth than Bonefos.  I also asked about Thalidomide maintenance therapy and was told he would raise it at the meeting after clinic.  This was discussed and apparently this isn’t offered routinely at the moment as although it improves disease free progression it doesn’t increase overall survival which is what I’d read.  However the young doc stated that Zometa had been proven to improve overall survival and without a by your leave said I should switch.  So we’re doing that.  So no more tablets – YAYYYYYYYYY!  No more, I can’t have a midget gem at 23:30 because of taking my Bonefos.  (Well no more ‘official tablets’ I ‘voluntarily’ take curcumin, flaxseed, glucosamine and chondroitin.)

B had so been looking forward to three monthly appointments and now we are down to four weekly Zometa trips in addition to the three month appointments!

Now both the Zometa and the pre-appointment blood tests, obviously require a trip in the car and B didn’t say anything about this at the time and therefore I assumed he was satisfied I could go by myself – IN THE CAR, BY MYSELF, TO LIVERPOOL.  Sunday however he felt the need to broach the subject – he will be accompanying me – for the company of course!  I will have to get him to accompany me to a museum or art gallery and then we can see how long it is before he trusts us (the car and I) to go by ourselves.

I also asked for confirmation of what type of myeloma I have – yes, I know, more than 12 months after diagnosis but obviously this is one of the reasons we swapped hospitals.  I had seen what I thought was IGA on a set of blood forms but you know what doctor’s handwriting is like so it was hard to be definite.  After the doc confirmed it was IGA I asked if this made me susceptible to certain types of infections over others (all in the midst of beepers and nurses with files, and B asking what the difference was and if it was better or worse to have a rare form of a rare disease but being reassured that the treatment was the same regardless I was so impressed at one point when he had to answer a beeper and was able to come back and carry on from where he left off) apparently it doesn’t – it’s not that straightforward – however if you have IGG you can get a top up of antibodies via infusion should the need arise.

After wishing the doc a better afternoon that the morning he was having and as Friday was a lovely day we decided to take a little trip into the city centre for lunch, via a fabric shop where I found just the fabric I was looking for curtains for my sewing room, just perfect, JUST what I wanted, except I wanted it for way less than £17.50 a metre!  So needless to say I will have to rethink that one.

So we vent to ze little French bistro for ze lunch.  However my little English tummy had been a little temperamental following a shop bought but freshly made sandwich last Tuesday.  It had settled down  but took exception to the chicken main course.  Now I can be a little bit funny with dead things on my plate.  I don’t know if it’s because I was veggie/vegan for a number of years but I generally don’t like what’s on my plate looking like it could have once been a living something.  This has become increasingly so since my SCT.  In fact we had ‘chicken gate’ a few weeks ago.

I decided it would be a good idea to get an organic chicken, a dead one obviously, and I cooked the chicken and made two meals from it.  I then decided it would be an even better idea to use the carcass for stock for soup.  Big mistake.  I took the lid off the stock pan and gagged.  I walked away from the pan and came back later and, did you guess, yes I gagged.  So B drained the stock and I cooked up some broth mix, B stripped the carcass and added the chicken bits and it was VILE!  It was the sort of culinary disaster that is reserved only for my baking endeavours (which are either excellent or unrecognisable as any sort of food stuff).

So I vas sitting in ze little French bistro (where there was no music in the toilets but a recording working through the alphabet and zaying ow to pronounce zings in ze French) having thoroughly enjoyed my entree and then the chicken landed.   SPLAT!

B offered to swap for his pork steak but by then that wasn’t looking too appealing either.  So after five minutes of deep breathing I approached the, well to be perfectly honest I’m not too sure what one bit was – there was definitely a drum stick – but the other may have been the top part of the leg squashed, some underlying area – I really don’t know, but I took the skin off and the meat fell off the bones so it seemed done but it was all dark meat which I wouldn’t normally touch with someone else’s fork.

For the next ten minutes I pushed stuff round my plate, eating the odd snippet but by then even the veg was unappealing and I was so looking forward to the ginger and passion fruit cheesecake and couldn’t even eat all that.  That also somehow managed to look like I’d left more than I’d received much to the consternation of the waiter.  And am I alone in thinking that waiters with ze thick accents probably sound as French/Italian as I do when they set foot out of the restaurant?

Following the chicken I ended up being unable to eat my Indian takeaway on Saturday, my lunch on Sunday, tea a friend made on Sunday night by which time I was feeling decidedly ropy and couldn’t wait to get home to bed which is unlike me, and finally up-chucking in the wee small hours of Monday morning and spending all Monday on the settee mostly asleep!  In fact in the world record of not betting off settees I managed to stay on the settee from the time B got up until he went to work!

I am however feeling considerably better today and am sure it’s impossible to get tired of dry cornflakes!  Isn’t it?