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?