Tag Archives: leukemia

5 Years Time

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A lesson I learned recently is that a lot can change in a year. It comes up a lot with family and friends- one of the days at CYE this summer my friend Ella and I were stood chopping up potatoes and reflecting on the fact that at around that exact time a year ago I was in Southampton, under general anaesthetic having my diagnostic bone marrow taken. The situations were so different that it was encouraging to think about where I am now compared to this time a year ago!

I have this book called “Q&A a day journal” where you have 365 questions (one for each day of the year) and 5 slots to fill the question in, the idea being that you fill it in for five years, and can look back on your answers each time. Yesterday’s made me laugh at the comparison, which got me thinking and inspired this post. Here is the difference between last year and today…

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I was in a totally alien and new situation, embarking on an unexpected (and what appeared to be at first an unpleasant and unwanted) journey. Currently I don’t see it at all that way, as I feel quite distant from the person that stayed in hospital for around 6 months, who was slowly but surely losing her hair and whose world became her illness, treatment and blood results.

This year I am in a new situation again, but this time it is something altogether more welcome than Leukaemia! I won’t bore you with more talk of college but be assured that it is going brilliantly so far! I have offered to be a student representative for Psychology- their job is to meet with the teacher and the head of A levels to discuss how our class feels about the course and provide any feedback and I have already signed up for two trips so it’s all excitement!

I’ve had many people ask recently where I am at with treatment (being back in normal society is still a thrill!). Since most people know nothing about this (oh you lucky, healthy people) and often people don’t realise how much is still going on I thought I would show you what maintenance treatment looks like. Conveniently it happens to be a Wednesday, the day I take my weekly Methotrexate dose!

First up, morning tablets. Folic acid, an anti-viral drug and a stomach lining capsule. 5 days out of every month this will include 4 tiny Dexamethasone tablets- the dreaded steroids! At lunch time it’s the anti-viral again, along with a second dose of steroids if it’s during that 5 days.

The evening dose is the most complicated and contains the proper chemotherapy drugs every day. The four smaller tablets I am taking every night for the next year (they are a chemotherapy drug called Mercaptopurine) so the larger yellow ones are the methotrexate. In the evenings I have a few other ones I can take if I need them which depend on how I feel e.g. pain relief.

leukaemia maintenance chemotherapy tablets

Along with these tablets I have the monthly IV and a lumbar puncture every 3 months, which you have heard me banging on about multiple times so I won’t go into detail here!

I think the journal I mentioned before is a great idea, as it helps you to explore odd questions about yourself that you wouldn’t normally think about. As a nostalgic person who keeps even the most ridiculous thing simply because it is a memento, the idea of documenting the changes in my life over the 5 year span is very welcome! Who knows where I’ll be in five years time… maybe I’ll be finishing at university… maybe my Leukaemia will have relapsed… maybe I will be travelling… maybe I will have completely changed my career choice… maybe I’ll be winning Britain’s Got Talent (yeah, that’s likely, ha ha ha). Anyway, it’s not up to me! I’ve learnt to take life as it comes now, enjoying the highs and learning from the lows each time.  All I know is that it’s not worth stressing over, because that stops you from looking around and appreciating life in the moment. You lose sight of the small things you’re blessed with and forget to be someone who does those things for others. I’m not saying I am perfect at this all the time, but it is something I am trying to work on every day.

Burnin’ Up

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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!