Tag Archives: chemo

ALL the way home…

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Just over 2 and a half years since this all started, December 17th 2015 marked the end of my treatment for ALL. Clever pun in the title? Anyone? No? I’ll stop! But I have been waiting two years to use that one.
 In December I had my last ever lumbar puncture (hooray… those of you who have been in this for the long haul will recall my not so brilliant track record with those!) as well as finally saying goodbye to bone marrow procedures for good.
It still hasn’t really sunk in. Being the ‘cancer girl’ is such an intrinsic part of my day to day life that tablets, blood tests and texts from nurses became second nature to me. I liked the security of knowing exactly what my bloods were doing each week, since this is the fastest indication if anything is wrong. Now don’t get me wrong, I’m not complaining. Waking up on December 18th and not having to worry about taking my tablets brought a new freedom that I’ve taken to very well. I’ve lost count of the times that I used to stare angrily at my tablets and think about how much I hated them and wished I didn’t have to take them (which I always would do in the end… the fear of relapse would have me swallowing those darn things faster than you can say chemo).
Although I was originally told that my treatment would end in the summer of 2015, the timing worked out well in that I was all clear of chemo for christmas. It also meant that stress alone rather than the pesky steroids was the reason I stayed awake at night before my mocks! Although I have definitely regained a lot of my ordinary life through the maintenance treatment allowing me to go to college, this final step of finishing treatment has given me another bit of much needed and greatly cherished normalcy.
With university interviews happening sporadically and my A2 exams looming *gulp* life is fairly busy. I’ve struggled a lot to find motivation with studying this year so I’m now working extra hard to ensure I don’t waste my good work from last year.
So this is it. I think I’ll write one last post on the lessons I’ve learned from this whole experience as that seems a good way to round this blog off. I’ve loved every minute of crafting posts, reading comments and most of all having a creative outlet where I’m able to be totally open about my experiences. Thank you for reading and for encouraging and  supporting me over the years. It means more than I can say.

 

Quick Life Update…

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A lot of medical things have been happening recently, beginning last week with a lumbar puncture (not good) then this week chemo (this went well!) and today ending on a bone marrow (again not good!). I don’t know why the two procedures went badly this time, I just felt a lot more pain than I normally do. Usually I can’t feel a thing and am having too much fun off in my own world (what I would do without gas and air I don’t know!) but these experiences were quite stressful as the doctors couldn’t seem to find the right spot, meaning that I had to do a lot of moving around. Shuffling around doesn’t feel right when the last thing you were aware of was having a big needle stuck in your back! Anyway, on the bright side, now there is NO MORE BONE MARROWS FOR A YEAR!

I even managed to be in college for the rest of the day, which to me was a sign of how far I’ve come. When weakened and in hospital they used to tire me out for the rest of the day and have me hobbling around in comfy clothes for at least 2 days afterwards!

My body has been amazingly tolerant of the maintenance chemotherapy, which is good as it means I am getting as much as possible. I think that should mean that the Leukaemia is less likely to relapse, which is definitely a good thing.

I am starting to pick up and successfully cope with small coughs and colds which is a good sign. Despite my immune system being lower than normal and still attacked with drugs every day it’s still pretty good!

College is still going well, I think I have a good balance between socialising and work (parents evening is coming up so I’ll get back to you on that…) and have made some great friends, so this term couldn’t have worked out better. I’ll probably never fully understand why Leukaemia happened to me, but I am starting to pick up little things in every day that I have learned or that I wouldn’t have seen or been able to do or appreciate before.

Hope everyone is well!

In case anyone hasn’t seen my hair recently, this is how it’s doing. Look at those curls coming!!!!

chemo curls

I didn’t choose the puff life, the puff life chose me…

A New Normal

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4 days into college the work has started and mixed with a lack of sleep from my steroids last night plus studying the bit of biology I did not understand last year I am feeling rather sorry for myself today! I went to ask about dropping one of my A level subjects and it all moved along so quickly that I didn’t have much time to think, which led to me feeling really unsure about everything! I really wanted to do four, but I do also really want to focus and do the absolute best I can in my main three, so hopefully I made the right move today.

Sorry this is going to be such a ramble, I am a bit all over the place!

 I saw another Leukaemia patient’s post which I totally agreed with and have been meaning to write about for a while… her point was that sometimes she misses being ill. I know it sounds ludicrous… how could I miss being constantly poked and prodded and bothered? The truth is that life now seems simpler in those days. I adapted to my new life and had one thing to focus on: my daily blood results and just getting through my intense treatment. Plus it was totally OK for me to lounge around watching box sets all day! It didn’t matter if the steroids kept me up all night because the nurses would chat to me or I could just sleep it off the next day.

I feel like being back at college my brain is on sudden overload. It’s another new normal altogether. I have to worry about homework and timing and outfits and lunches and to be honest it does sometimes leave me missing those lazy chilled days! I am not saying I miss actually feeling rubbish, of course not! There were many times when I felt frustrated with my lot and ached to be able to leave the hospital and doing something productive! I appreciate it probably doesn’t sound that simple to you either, I know I am a mass of contradictions right now but I think my brain remembers parts differently and forgets how often I wanted it all be taken away.
I just miss having less responsibility and less to worry about. I didn’t have to worry about all the teenage dramas, I was primarily a cancer patient and that was my world.  I imagined life all aligning really well once my intense treatment ended and thought that I would be so up for everything, but sometimes I need to take a step back and realise that I can’t just throw myself into a full normal routine again. This is where I feel a bit lost, as I am still readjusting and trying to find that all important balance of chemo, work, sleep and exercise… currently feeling like a one armed man trying to juggle way too many balls!
Also I expected to feel amazing all the time once I started my maintenance and though I often I do, I still always have a nagging worry about relapse. I’m also now stressing about the fact that once a month I am going to be feeling really down and tired, which is not something I need when I am trying to stay alert in a three hour lecture! If only the steroid treatment was optional!

If I’ve caught up with you recently I am sure you’ll have heard me use the phrase “back to life” which  I do feel like I am, so despite the negative tone so far in this post, be assured that college life is going well overall! I have 4 main friends who are all lovely, two invited me to the cinema yesterday but the steroids had me racing to get home and lie down and another girl and I are going for something to eat or drink after our afternoon lessons tomorrow… TGIF!

We got a large list of enrichment clubs today and some sound really cool, so I need to chat with everyone and work out what we feel like doing… I am tempted to go for cooking, zumba, badminton and rock climbing so far so that will take some debating!

I made it through another zumba class this week (I even turned up without mum this time!) but I did have to stop halfway through as I felt a little off and thought it would be best to have a break seeing as I’d had chemo the day before… I did not want anything to happen in the middle of the scout hut with a load of strangers around me!

My other news was that I finally got to a TYA (teenage and young adult) meal, where all who have been treated on the unit at Southampton get a free meal out with CLIC Sargent. I had a great time catching up with everyone and was so relieved to finally be able to go… I’ve been eagerly awaiting one of these treats and free days out since last September!  Here’s a photo of the table, including Ed, Emily and Ollie who I have mentioned quite a bit!

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Learning to Be Patient

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Am happily back at home now and I had my last dose of antibiotics today. Hopefully that will hold off another line infection for the last big month of chemo, then it can finally be taken out! The microbiologist wasn’t worried about it affecting me after as she believes the problem is just in the line. Once it’s taken out it will be one less thing to worry about anyhow.

I still have no word on when the chemo will be under way. My platelets were only 45 on my latest FBC (full blood count) when they need to be up to 75 in order to go ahead. I’ve gone through a whole spectrum of emotions about this: from patient to annoyed, calm to angry. Honestly I have now given up thinking about it as much as possible. I have to accept that getting the full treatment is my priority and the chemo will happen when it happens. Plus I learnt early on that not much runs smoothly or swiftly in hospital! I’m taking it as a test of my patience, which is something I really need to work on! Even though it is unfortunate that it cuts into summer more now there is nothing I can do about it. That’s the way the cookie crumbles!

Now, do I have any Zumba fans out there?
(If you don’t know what this is, it’s like crazy dancing for fitness and it is great fun!)
If you like Zumba and would be up for raising money for the Sussex Snowdrop Trust there is a charity zumbathon on Sunday 1st June from 10am to 12 noon. The venue is Oving Jublee Hall, High Street, Oving, PO20 2DQ and tickets cost £12.50 on the door.
The Snowdrop nurses have been a huge help in my journey. Whether it is taking bloods, just chatting or providing vouchers for petrol (the constant drives to Southampton were eating up an insane amount!) the nurses have been professional, supportive and above all caring and kind. The charity deserves every penny that will be raised through the Zumbathon, so get your kit on and join in if you can! They have asked if people could wear the colours of the charity, green and white, but have said it’s not a problem if you’d rather not. I’m really hoping I’ll be able to go but it will be dependent on blood results and chemo.

That’s all from me!

New Blood Results

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Hello!

My platelets were exactly the same today as they were last week so that means no chemo for this week. On the plus side my neutrophils are up a bit at 1.4 so I have a bit more of an immune system. They are still beneath a normal person’s results but that’s expected at this point with the drugs I’ve been on and I’ll take what I can get! My hb is 105, it’s hovering round 100 which is a good level for me.
On Monday my aunty and I drove up to the trundle hill for a picnic because there is a lovely viewpoint up there, but within minutes of arriving the rain came and the whole of West Sussex was engulfed in cloud… which kind of ruined the view a bit, as you can see!
clouds over west sussex
Life is getting pretty dull sitting around waiting for the chemo, the only exciting thing I did today was catch up with a friend. After that I didn’t really feel like doing any of the tasks I’d set myself so I watched Breaking Bad and read a book all afternoon. In the beginning it took us quite a while to get used to the fact that you can have down days where you either feel rubbish or are just lazy, in fact you need to! When I came off the first course of steroids (on which I was buzzing and doing lots) I crashed and after reading MacMillan booklets such as “How are you feeling? : The emotional effects of cancer”  (honestly not something I thought I’d ever need!) I embraced the rest days as they are good for my body while its cells are killed!
The next step is bloods again on Thursday and who knows what those results will be!

Busy Doing Nothing

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Hello strangers!
I feel like I haven’t posted in a while so I thought I’d do an update.
One of my friends writes in her biography on Instagram “Hi, I’m _____, I’m 17 and I’m currently doing nothing full time.” This really made me laugh when I saw it and couldn’t be a more accurate way to describe my life right now!
Someone recently asked me that question “how are you filling your time?” again and I still struggled to find anything interesting to tell them!
I have a new best friend called “Netflix” and together we are catching up on popular show Breaking Bad which I’m sure many of you watch or know of! I’ve also started studying bits and pieces for when I (hopefully?!) start college in September again, the college kindly gave me a login so I can use all the resources that the teachers post which is really useful.

I am neutropenic again which means that I have to stay away from big groups of people to avoid getting ill. That is one of the most frustrating parts now because EIGHT MONTHS of not being able to go out like a normal teenager is a LONG time!

I’ve had a couple of aches and pains recurring recently which is probably the worst part of the whole thing, but one was my own fault as I overworked myself doing exercise so I ended up hobbling around like a granny with stabbing pains in my kneecaps for a couple of days!
My hair is coming out fairly rapidly again, I almost clogged the drain in the shower the other day which was equally humorous and horrific! This time due to its length I can pull out clumps which I found quite scary and upsetting at first. It’s annoying but I am holding out hope for it as I did manage to keep my hair before when my first doctor told me it would be gone in two weeks!

My next chemo is on Monday at Southampton, I am set to have a lumbar puncture and a drug called Cyclophosphamide but my platelets are a bit on the low side at the moment so they might not have recovered in time for the procedure. No complaints here! The Snowdrop community nurses are coming to do pre-chemo bloods tomorrow at home and those results will give the doctors an idea of what’s happening, after that they might decide to give me a transfusion at St Richards or wait until Monday morning, I will let you know.
The photo for this post is of the set up for when the nurses come as I thought you might be interested to see what bloods at home looks like ** warning- photo contains needles but no blood just in case anyone is squeamish!**

I usually get all the stuff ready before the girls come because it saves them time and means that the giant cardboard box of medical equipment doesn’t have to hang around downstairs (instead it clutters the floor of my bedroom!) The girls do all the drawing up and everything but me having everything ready to go saves them a job. I’ve been incredibly lucky to have to this team as in the long run it will save over at least 100 hospital trips! They are all really sweet people who know me really well, one woman comes in and can tell straight off from my colour how I am feeling and if my hb is a little low when even me looking in the mirror didn’t clock any
difference!
medical equipment for blood tests on a hickman line

In other news, we were amazed at the support for the “tour de solent” cycle ride! Running total is an epic £1,185! Thank you so much to anyone who has donated so far to support Teenage Cancer Trust, you guys are incredible! All the messages on the Just Giving page were great too, thank you again for being so awesome! If you haven’t already donated then please consider giving even the smallest amount, the giving can be kept anonymous too so you don’t have to say who you are or how much you give. Here’s the link again….
https://www.justgiving.com/Ray-Drabble

The ride ends on May 25th and we might get a group to meet them and go for a drink at Gunwharf when the cyclists return but I will update with details for that.

I’m currently feeling really well but if all the chemo goes ahead next week it can be quite intense and I might be suffering, having two chemo drugs in one week can be a recipe for sickness! I can’t really tell as it’s really unpredictable!

I think that’s all for now folks, I have been inspired by another Acute Lymphoblastic Leukaemia blog called “The Kathy Diaries” (check it out here if you like http://thekathydiaries.com/ ) to post more often so next week I will try and do at least two updates. You guys can send emails through the Ask Me section hassling me if I am being rubbish, it will motivate me!

Quick Update!

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Had 2 chemo doses again today and I am feeling ok so far except for a bit of back pain from one of the drugs. My next treatment isn’t for about 2 weeks so if all is well the consultant has agreed to discharge me on Saturday. There’s no point in me sitting around here doing nothing when the bed could be used for other people so I should be getting some more freedom which is great! I’ll just have to be super careful at home because it’s very likely that my immune system will be flat again pretty soon. Luckily Howard Ward at St Richards have agreed to give me a bed if I get a temperature and need anti-biotics like before so even if I get ill there is a plan in place.

So anyway, I will let you know whether I manage to get out or not!

Goodbye for now!

Chemo Finally Starts, Plus Some Stir Crazy Ramblings

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I know all these updates and changes of plan that I have been posting recently have seemed a bit absurd and discombobulating but I can finally come to you today with my official treatment plan!
My current doctor (his name is Charles for future reference) told me that he has written up all my drugs for the next month which is very efficient and good of him!
Earlier on I had a lumbar puncture which means that there is currently a drug called Methotrexate happily floating around my spinal fluid and preventing any leukaemia cells from growing in there. Tomorrow I have two doses of IV chemotherapy through my Hickmann line and Friday brings the lousy lower back injections but thankfully after that I will be free until next Thursday!

I’m hoping that in the space where there is nothing happening they will ship me off home again for the weekend or at least grant me some day leave so I can go for a walk in the New Forest or a spot along the docks in Southampton we found once.

My immune system is currently at 7.8 neutrophils which is well within normal range and still so high that I haven’t got used to it so I’m currently feeling optimistic that it won’t drop too fast and I won’t be stuck in my prison cell too much!

Today everyone seems to be feeling a bit tired and listless which makes us good company for each other, when our moods coincide we know how to be friendly but not get on each other’s nerves because we all understand how the other people feel! I think these days are worse for our relatives as they don’t know how to cheer us up or that actually sometimes we just want to be down and lazy and can’t help being snappy at you!

I’m currently writing letters to people to alleviate boredom and feel more creative so if you’d like some correspondence (well really just me rambling on about nothing and doing some truly horrendous sketches) please go to the “ask me” page of my blog and fill in the form with your address as it will be emailed straight to me so no one else will see it and you’ll be giving me something to do! Even if you think I don’t remember you or it would be weird- trust me it won’t! It’s really lovely for me to see that people read the blog and care, some of my most appreciated messages have come from the most unexpected sources so don’t doubt how much even the little things mean!

Hope you are all enjoying the Easter holidays and don’t eat too much chocolate…
who am I kidding there is no such thing as too much chocolate. Stuff your faces!

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My first night back at the hospital last week was difficult and the few days I was in were quite a drag as I hadn’t adjusted to being back into hospital yet, so the extra weekend of freedom they gave me was much appreciated! On Saturday we ended up messing around on Felpham beach because we were forced to go on a windy and cold walk…
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… and Sunday we had a lazy day at home and saw some family.

I came back here on Monday morning but ended up waiting until the afternoon for the doctor to do my bone marrow. It was a bit more painful than they usually are but nevertheless a relief to get it out of the way.
There’s a lot of girls on the ward at the moment, obviously it sucks that we have to be here but having other girls to talk to is really helpful as we can share all sorts of things and it is really comforting to have similar people closer to my age around! In the evening a couple of us from the ward and a friend from next door got together in the social room for a chat and a movie which was really nice, Asheton and I were trying to be helpful and answer a new patient’s questions but I think we just shocked her a bit by telling her about 6am bloods and whacking out our Hickmann lines which she knew nothing about!

The plan for today is to start chemo which might include a lumbar puncture, that will depend on whether my platelets have gone up enough.

Nail Update!

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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…
aztecs

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!

Today’s Biopsy

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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.
Ciao!