I hope you have had a good weekend! I definitely have- I’ve seen some great people and been given EVEN MORE lovely presents! At this rate I will have nothing to ask for at Christmas because people have been so generous!
Speaking of gifts, earlier this week Ed presented me with these (which he no longer needs as he is not on a neutropenic diet) …
He got them as his mum works for a school and they order them for the canteen there anyway, I think us “neutros” are not supposed to use ketchup bottles because it lets bacteria get in and possibly bacteria grow on it when the top gets all manky!
Like Ed, I have become one of those patients whose levels are consistently low- so much so that it interrupts treatment such as LPs. After dropping to 11 I had a transfusion which took the level up to 30, however I then dipped back down to 13. These are not at all good levels for the LP (they want my platelets at 80) so I am having two bags of platelets today and one is on reserve in case they drop again in the next 24 hours.
My next LP is scheduled for 11.30am tomorrow. I will let you know whether everything goes to plan or not!
Earlier I had a lovely chat with Yvonne, the specialist nurse for the TYA unit and C6 the adult unit (and accidentally ended up spilling my life to the poor woman!) First she got me very scared- asking about Daniel having a blood test to see if he is a match for me if I ever need a bone marrow transplant (BTW DAD/DAN IF YOU SEE THIS DON’T FREAK OUT, ITS NOT LIKELY TO HAPPEN AND I WOULDN’T FORCE YOU IF IT DID COME ABOUT!) and then she got me very excited by saying that her and another nurse are going to ring chichester paediatrics to see what parts of my next block “Escalating Capizzi” can be done at St Richards, so that I could be LIVING AT HOME! Somehow I think the doctors are going to be reluctant to allow it but that would be reaaallly good if they did! I do find the idea daunting though- I’m so used to being here and I can’t imagine what it will be like being home again for an extended period of time but on chemo too. It’ll be another big life change to adjust to, but I’m sure it will work out fine!
Anyway, I am now eating Heroes and mulling over whether to watch I’m A Celebrity or Fear of Flying: Caught On Camera at 9! Before i go, here’s this weeks nails…
My last post was meant to be sent around 3 pm, but I lose wifi when I go off the ward so sorry for the delay and weird timing!
here are this weeks FABULOUS Halloween inspired nails…
There’s no question that I have a seriously talented and cool Aunty!
Not a lot going on drugs wise this week but I am seeing some of my loveliest friends so I am really looking forward to it.
Hope you all have great half terms!
New form of entertainment: watching the men on the roof opposite. Who are they? What are they doing? It’s all very thrilling, really.
I am very happy to tell you that I have felt very good for the last two days! I’ve been more awake and despite being taken off the 24 hour anti-sickness pump I feel fine! The most unpleasant thing at the moment is peripheral blood tests and taking pills.
Today I found out exactly what has gone wrong to prevent the lumbar puncture. After the doctors tested all the clotting factors it became apparent that there was nothing wrong with them. This stumped them a bit and apparently Charles even said something along the lines of “I don’t understand, I’ve never seen this before”. So next thing you know they are on the phone to a SPECIALIST in LONDON! I am that difficult that they need a specialist! (we always knew I was special… just not in the way we expected… I jest).
Anyway… According to Heather my doc explained what was happening and that they had no results to show what was causing it and he said straight off “has she taken peg asparaginase?” (referring to one of the chemotherapy drugs that yes, I have taken), and he used his specialist knowledge to explain that asparaginase leaves an enzyme in your body that attacks the cancerous cells for a few weeks. That’s the normal bit.
Now to the part where I become even more weird and wonderful.
I happen to be the 1 in 100,000 people who reacts to the enzyme, and the form of the reaction is that it messes up my clotting. And voila! Now we know the root of the problem!
My levels are “on the fence” now, I am on the borderline between ok and abnormal, so the doctors were deciding then whether or not to go ahead with the LP or whether it was too much of a risk. The consequences could be a bleed into my spinal chord and that is not something we want- loss of sensation and use of my legs would not be appreciated.
Have now been told by doctor Tom that it should be fine to go ahead with the Lumbar Puncture on Monday (AT LAST!)
The LP is not really imperative chemo, it’s used as a preventative method- putting in a drug that inhibits the growth of any funky cells in my spinal fluid which is why it is OK to move the dates around or miss a few if it can’t be helped.
Had a lovely visit from some close family friends, some not so lovely guitar playing from Ed (using his ukulele chords on my guitar and attempting some dodgy power chords) and later I am seeing some good friends from church so today has been a very interesting and rather good day!
Hey everyone 🙂
So today has been a very lazy day and I have yet to do one productive thing but don’t judge as that is what Sundays are for! My one achievement is that my neutrophils have increased from 0.1 to a jaw-dropping, awe-inspiring and heart-warming… 0.2. This is totally normal though and at least it shows that my levels are going up!
Excellent news on the bone marrow results too- there is no evidence of leukemic cells left in my spinal fluid which is a BIG RELIEF! The sting in the tail is that if the labs in Bristol can’t find a genetic marker to pinpoint, they’ll go back to my bone marrow test from day 9 of treatment which was full of leukemic cells. This means my treatment would be based on those results and take longer, despite the fact that the more recent bone marrow proves I am clear of most of the cells. Its a mad protocol!
One thrilling event of today was the fire alarm being set off. In a hospital ward if the fire alarm goes, the wards next door and above and below also get flashing lights and a noise to warn them in case it is a real moving fire, so I had got used to the false alarms due to toast being overdone in the adult ward next door. Assuming it was indeed a falsie and knowing that security would come and confirm, switch the alarms off and halt the brigade I carried on napping. Unbeknownst to me, my friend Ed from room 1 had burnt his sausages by leaving the oven on the wrong setting and the kitchen was filled with smoke! Some actual firemen arrived and assessed the situation- we are all safe, but in an isolated ward no windows can be opened. This is where the problem lies: how do they get the smoke out? If they open the kitchen door smoke will seep into the ward and set off every alarm in every room!
I haven’t actually been out to see what is happening, but the bursts of walkie-talkie communication make it seem like I am in a Casualty christmas special which is all very dramatic!
Those poor burnt sausages are currently lying in the kitchen sink and it’s going to smell in there for a while but I feel sorry for Ed- he sounded suitably humiliated talking to the nurses and I don’t know what he can do for lunch now- dad cleverly pointed out that the charred remains are definitely in-ED-ible (if you’ll pardon the pun haha!)
I’ll spare your Sunday lunches and my dignity by not going into particular detail, but I’ve started to feel quite tired and ill in waves during the day now. On one side this a good thing because it makes the whole situation seem more real. I actually feel like a cancer patient now but feeling rubbish is pretty naff! Just wanted to warn you as if it seems like I am neglecting the blog or ignoring comments it is only because I am spending the majority of my time lying in bed resting my head! When I started to feel tired I suddenly realised that NO, I don’t have to be in the shower at 9am getting ready for a busy day! NO, I don’t have to put on a nice outfit- comfy tracksuit bottoms will do just fine! And NO, I don’t have to have tutoring if I am not up for it! I missed a Biology session (which secretly I was glad about as it is quite hard work learning the new stuff not in an actual A level class) and on Thursday I was too weak to do my Psychology session which was mildly irritating, but now I know that it’s ok if I feel rubbish and can’t handle it.
That’s all folks, bye for now!