Wednesday brought a 9 hour long day at St Richards. I went in for a blood transfusion but ended up staying for chemo and platelets too. Each blood bag takes a painfully slow 3 hours to go through so by the end of the day I was going crazy from boredom and restlessness! After all that my levels didn’t even improve much, despite a big bag of platelets they went up by a grand total of…. 1. Really helpful!
The good news is that I only have three doses of this treatment block left! After that I will be waiting for my counts to improve so that I can have my line taken out and start my maintenance phase which lasts just over a year. I have spent 9 months counting down to this milestone and now that it is approaching I can’t quite believe it.
Now for an update in the nail art department, here are the watermelon nails I painted myself this week (I think I went a little heavy on the black ‘seeds’ though)…
… and as for my latest TV addiction, that would be Hart of Dixie; a show about a New Yorker called Zoe Hart trying to make it as a big-shot surgeon, who ends up living an unexpected life as a GP in a small town in Alabama. Cue red neck accents, founders day parades and endless love triangles… all very charming and American so right up my alley!
I am loving all the sunshine we are getting at the moment, but let me tell you the heat is a real nightmare for wearing a wig! If I walk anywhere with it on I soon begin to feel as if I am wearing a woolly hat, which is anything but pleasant in the hottest parts of the day! I do appreciate that it is a once in a lifetime opportunity (or I hope so anyway!) to see what I look like bald as many people will never have that experience (lucky them), but I’m getting pretty impatient for my hair to start growing back again. I’m hoping for curls.
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!
Still waiting for the missed lumbar puncture, am getting a bit tired of all the miscommunication, waiting around and most of all the peripheral blood tests… leave my poor bruised arms alone please!
We are moving on with the chemo, some nasty drugs which make me feel ill but are all for the greater good so you have to grin and bear it. I’m not due any drips until Thursday so I get a couple of days off at the moment which is nice.
Today I was ashamed to admit to Ed that the highlight of yesterday was watching a DVD whilst lying in bed, (actually it was a game of pool and having a visitor but I had forgotten that at the time) so I have tried to do some different things today… i.e. blogging and watching youtube videos. Oh life is filled with excitement!
Have decided to use this down time wisely and acquire new tricks and talents such as learning all of the states of America by heart and being able to recite them. Will update you on how this is going and maybe upload a video when I can chant them fast enough for it to be impressive (this probably sounds ridiculous to you but I think its quite exciting. See, your perspective on everything changes when something like this happens to you!)
That’s all to tell apart from this weeks nails, they are pink butterfly wings and are so pretty!
So my aunty’s Sunday night stay brings with it another opportunity to paint my nails all funky! This week we went for an Aztec pattern using a black Barry M nail art pen. This is what they look like…
In the bone marrow test taken the other day the doctor didn’t get the full sample and we were told that shouldn’t be an issue, but it turns out they want to repeat it. I thought I was done with bone marrow biopsies for a while but alas, we battle on. Now we have to hope everything will go smoothly tomorrow morning and the labs can scan this sample quickly for the MRD test they carry out!
At the moment I have been feeling pretty tired and out of sorts. During the Induction month I was really active and this sudden dip in energy made me realise how many things I was fitting into each day. Now I’m finally feeling the knock of the chemo drugs and realising how much my body has been through. I know that I need to give it time off to rest and be weak, however the thought of just slobbing around sleeping most of the time still seems wrong! I’m finding it annoying that I can’t really do much and seeing people is difficult as I start to feel tired and a bit off.
The doctors are hoping to start my second phase of chemo at the end of this week or early next week, we are just waiting for my levels to go up enough. The “consolidation” is supposed to be less intense than the induction and the drug chart seems to show this which is a relief, my worry now is how I will feel on the drugs and having to have a lumbar puncture on the first day of the first three weeks isn’t going to be fun!
Today has been a good day though, as always it was lovely to have my aunty here and after she left I had a valuable rest and relaxation time. I hope your weeks have all got off to a good start and I’ll post again soon!