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!
I just had my second non sedated bone marrow test- it went fine! Thanks for all the prayers and thoughts, I know they are what is getting me through this all so smoothly!
One part of it was more uncomfortable than my previous experience but like the machine I am I said he could just power on- handled like a pro if I do say so myself haha!
So tomorrow I have my last dose of Vincristine, which marks the beginning of the last week of treatment in the ‘Induction’ phase. In this last week will they be tapering off the steroids and I don’t have to have the other drug Danorubicin. I can’t believe the first segment is almost over!
After that week ends it is a waiting game; waiting for the results of the bone marrow test to see what the next treatment regime will be and monitoring to see if my levels increase enough for some time at home before the next phase called Consolidation starts.
I am feeling good day today, I didn’t feel tired like before and have had some lovely visitors to make my day!
I had to have the usual daily tablets and anti-fungal drip but otherwise everything has been normal.
Tomorrow I need to have a couple of units of blood products to strengthen me up for some procedures on Monday and Tuesday which I thought you guys should know about. On Monday I will be having another lumbar puncture where they put some chemotherapy into the spinal fluid to make sure there is no leukaemic cells there. The first experience of this awake didn’t go well. Every little thing went wrong and it ended up rushed and difficult to find the right spot and I really didn’t enjoy it so prayers/thoughts appreciated! She is going to try a different position and give me something to make me a bit spaced just to make it easier but I am still a bit apprehensive!
Tuesday is booked for a bone marrow test which is supposed to be the worst of the two but I coped fine the first time- hoping this will all go smoothly again!
These tests will hopefully show a ‘marker’ in my cells which they can examine to judge how my cancer has responded. They decide what the next stage of chemo is so it is quite important! The one problem is that the test can be indeterminate which means they can’t give you a conclusive answer of how you have responded and whether you are in the high-risk or low-risk group. FINGERS CROSSED FOR LOW RISK! At the moment this seems likely judging by the results of the two I have already had and how generally well I am. I’ll be able to tell you in a couple of days to a week after what the results of these are so stay tuned!
So someone asked about how many people look at my blog and how well it is doing and trying to stay as modest as possible I feel like it is doing really well! The response I have had from people has been really encouraging! I have had a mix of random followers, family, people who know me keeping in the loop and it is even starting to spread out and get to people who don’t directly know me but want to follow it which is amazing! This is just what I wanted and my daily stats are at a good level! I’m not aiming to be famous or anything but in the future when I can get out more and get involved in fundraising events and things it would be cool to branch out even further, I just need to exert some more effort and get it out there!
Now I am going to eat some heavenly chocolate brownies from Kim and open a lovely looking gift from Jemma! Hope you are all well, thanks for reading.