Tag Archives: maintenance

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.

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High Maintenance

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My first maintenance chemotherapy started earlier. I had a very thorough check up from the consultant who tests all my reflexes as well as the usual things such as listening to my chest and asking the detailed questions. I don’t know why but I always have to stop myself from giggling ever time she does the reflex tests, I think it just feels ridiculous pushing against her hands with my hands and legs and having someone prodding my stomach and neck! I do feel reassured that she checks every single thing though.

I’ve been told that every cannula in my maintenance treatment will be in my hand, which is not the greatest news. The hand is one of the most painful places and I could feel every second that the needle was sliding into my hand (though in reality it took less than 10, it felt like at least 30!). It was the most drawn out pin prick I’ve ever felt! Once it had plasters stuck all around it my hand just felt a little weird and I was nervous of moving it too much because y’know, there was a tube going into it and all!
That being said, it went a lot better than the first time I ever had a cannula inserted, when 3 different people had to have a go, then when the doctor checked the blood was coming back I saw an arc of my blood spurt out of my arm. Imagine feeling queasy and upset about that and then going into a room where your parents tell you that you probably have leukaemia… You can see why I dislike even the thought of cannulas!

I got a paediatric teddy plaster though which added a touch of humour to the situation!

paediatric cannula

A load of tablets accompanied me home from the hospital, there is quite a bit to remember as some are taken once a week, some for one week in the month and some every day- that’s going to be hard work trying to get the hang of and making sure I am not missing doses! I am back on steroids for 5 days now which I hate as they keep me up in the night or make me wake up at stupid times like 2am.
Another old friend, the chemotherapy tablet Mercaptopurine, is back for the next year  and I have to take that every night. I dislike that one too as I am pretty sure it exacerbates one of my most unpleasant side effects – but I’ll stop talking about all the drugs I hate now otherwise I’d be here until December!

maintenance chemotherapy tabletsI had a visit from the Make a Wish volunteers which was really exciting, but choosing my wish ideas then prioritising them was tough! I’ll find out in a couple of months which one of my wishes is possible, so that’s something to look forward to!

Devon On My Mind

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We’ve had an action packed week down in Devon!

Since my last post we have been down to some caves dating back to the Roman era, climbed the rocks at the foot of a cliff, visited both neighbouring towns, hired motor boats and most recently been on a “Segway Safari”!

The caves were chilly but really interesting, in one place a worker signed the wall in 1868 but you could still read what he had written! We had to wear very attractive yellow hard hats in case of falling rocks and were given the option to wear a fleece poncho for warmth- something us teenagers politely declined!

Our climbing expedition felt very ‘famous five’-esque and despite being nervous and slow on the way there I was soon clambering around from rock to rock like the little kids around us! The water in the bay is beautifully clear even up to shoulder height, and is a lovely Jade colour. It gets waist deep just a few steps in which makes a change from having to walk really far out at West Wittering!

Two of our nearest towns were Sidmouth and Lyme Regis, we visited Sidmouth first and stumbled upon a morris dancing parade on the promenade, then we saw more of the Jurassic Coast through a guided ‘cruise’ down seafront. In Lyme Regis we did a spot of shopping and decided to treat outselves to lunch out. The high street was cute, but none of the other beaches have topped the one in the town we are staying in!

On Thursday we spent our time at Beer beach, mostly sunbathing but we also took two motor boats out for an hour on the sea- during which the boys managed to catch some fish and the girls succeeded in breaking the boat… we fixed it though, so no harm done! On the trip both boats caught sight of a seal in the wild, dipping in and out of the water which we were pretty impressed with!

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The segway ‘safari’ Friday morning was superb, at first when we were being taught the basics everyone was a bit shaky and unsure but once we got onto the training track we were off! (If you don’t know what this is, open a new tab and google “segway” then come back!) When our leader took off the speed limits we went flying on the road, as we went over a gentle hill we got to try weaving from side to side which was so fun! It’s really exhilarating with the wind rushing past and the wheels carrying you- “it’s all about trusting the machine” as our guide would say! We were given the opportunity to go over a bump in the track, which we girls hurriedly shook our heads at and rolled backwards, but the boys were up for the challenge. My cousin even took off and made a little jump out of it by accident which looked good but terrifying at the same time! After a quick group photo we all tried going backwards, at which point my uncle falls clear off of the back of his segway onto the grass!

segwaySo I had a brilliant week of holiday, coming back to real life was sad but had to be done! I loved Devon and definitely want to go back again to explore more! Today I should be starting my maintenance chemotherapy which lasts for a year. That means an IV this afternoon: the dose will go through a cannula (really not looking forward to people trying to get that into my tiny, useless veins!) and some tablets. I really don’t want to do it as I feel like I am back to normal now and don’t need any more treatment, but I know that I have to go through with it to hopefully prevent  a relapse.

Will let you know how the hospital goes and whether I feel any different from this round of chemo anyway! Hope everyone is having a lovely summer.