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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!

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Back Home… For Good?!

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I come bearing good news!

I thought that since I don’t have any chemo for the next two weeks I’d be able to get a bit of leave to be at home rather than sitting around in hospital for ages, however the doctors have kindly gone a step further and unexpectedly arranged the REST of my treatment block through St Richards and the community nurses who come to the house!
This means I will be living at home with my bloods done twice a week and I only have to go into Southampton around 4 or 5 times in the next 2 months for the bits that St Richard’s can’t do. This is a much better deal than being stuck in the unit the whole time!

I am still neutropenic and will probably be up until June so I have to be careful about what food I eat and avoid people who are ill or have illness going round their family but I’m so glad that I get to be home that I’m not bothered! Now I just have to be super careful because I don’t want to end up in hospital when I don’t have to be because of an infection!

We had to pack up the room and there was so many bags and boxes that I have to confess I haven’t unpacked it all yet… so much stuff but so little space to store it!

So last night was possibly my last night on the unit ever! (I’m still a smidge sceptical as the doctors did say that before and then I ended up in hospital again but I will enjoy whatever time I can get at home and hope that it will all work out!)

Bad News But a Very Good Day

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The bad news is not too bad so don’t worry!

The ward rang this morning and they want me back in on Monday because my platelets went up (which I was very surprised at!) After this time at home which has been (and still is for the coming weekend) filled with lovely friends and family moments it is going to be boring and lonely being shut up in hospital getting needles prodded around my back and starting chemotherapy again.

Today Gracie and I went to the art and craft walk in Bosham, which I am assuming most of you locals know about! It’s so adorable with all of it’s tiny shops and cute cafe, but we were there for another reason. Doodle and Daub- the pottery painting place! It was great as they got us started then left us alone upstairs so we could get on with painting and chatting away. I really enjoyed it and am very annoyed that I can’t fit more of that in while I am home, it was perfect as there were only about 13 other people in the whole two floor building the whole time so I didn’t have to worry about picking up a cold from someone. Most of you will know that I am terrible at art- I somehow managed to bluff my way through 3 years of it in high school and used stick men in any notes made on drama performances! This is why I was pleasantly surprised with the bowl that I decorated (I will admit it wasn’t my idea- wonders of the internet and all that!)

My Watermelon Bowl

My Watermelon Bowl

 

"Gracie's
The colours will come out much more brightly once the pottery has been through the kiln, so we are looking forward to seeing them!
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I thought if I put my counts in when I know them it might make more sense than when I suddenly drop in a random number and interest you to see the pattern so Thursdays bloods were:
Hb (haemoglobin/red blood cells): 98
Platelets (make the blood clot): 81
Total White Cell Count: 4.5
Neutrophils (immune system): 2.6

That’s all for now,
Becca.

It’s Beginning to Look a Lot Like Christmas

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After my grandparents came for soup and french bread at lunchtime today we went for a lovely walk with my other grandma at Slindon woods. There were lots of autumnal colours and crunching leaves which was lovely to be out in!
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We also went to a tiny cafe called The Forge because it is usually very quiet, but there was too many people so I had to sit outside with mum and Daniel. We ran into my cousin Holly and my granddad as well who had been out taking their dog for a walk so it was lovely to see them too!
By the time we got back it was dark so we drove up into the streets of town to see the Christmas lights! It was annoying not to be able to get out and walk around properly but I’m really glad I got to see them at least!
Tonight mum is making my favourite meal of fajihtas, hurray for not hospital food!

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Tonight I wanted to share two amazing things that have happened to me since I was diagnosed.
The first happened a few months back and I wanted to blog about this before but wasn’t sure I should, but since this second event has happened I felt I had to express myself!

So the first occurrence was that someone anonymously put some money in an envelope through our door. When my aunty told me I was in shock! This sort of thing happens in movies, not real life! It meant that my parents were able to buy me a really awesome laptop and I could not be more grateful as it is my lifeline! With it I was able to start my blog, I can skype people, stay in contact using social media sites and most recently take charge of this years Christmas shopping! I really admire whoever it was for not revealing their identity as it takes a certain type of person/ people to just leave it with no note or any clue- I don’t think I could! So even though I can’t thank you in person if you are reading this I want you to know that your act of kindness has brightened my days here and inspired me to give selflessly in the future.

The second has just happened and has left me in shock again. My granddad has been visiting a church near where he lives & naturally he had asked them to pray for me so they knew our situation. At one of the meetings someone handed him an envelope and said that they wanted to give this to help with fuel costs for my parents. It could not come at a better time as everything is going wrong- the washing machine has issues, the roof in my room was leaking and dad has just shelled out on new windows as ours are terrible: in winter I can see my blinds moving in the draft! The amount of money was staggering coming from strangers! Apparently one of the girls there reads my blog so if you know this is you then please tell everyone how thankful I am! What I have learnt through this is that God really does provide. Not just through money but through the ward I have been given, through the nurses who have helped and reassured me, through the lovely people I have had the chance to get closer to, through the meals given that have supported my family and much more. I just wish that I’d learnt this earlier and it didn’t take something as huge as this for me to appreciate how God fills all my needs in life!
He really is wonderful and I hope I have shown and can continue to show some of you this through my experiences!

General Nonsense You May Find Interesting

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Hiya all!

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) …
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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…
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Happy Day

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Hi!
Today has been very good!
It started off with a short phone call- but not just your average person to person catch up, I was speaking to my whole church! It was so good to be able to thank them for everything they have done and are doing for me and I’ll admit I teared up at the voices of all my church family saying “bye!” in unison. One of the most frustrating things is being stuck here and not able to be at church every sunday to see these wonderful people and get inspired each week by a sermon and sing loudly in worship!

The next nice thing was my shower, which is a task I have really lost patience with recently so I was pleasantly surprised to find myself busting some pretty good moves and smiling stupidly.
If you’ve never had music on in the shower before I really suggest trying it, it helps to get the day off to a happy start and showering in silence is dire in comparison!

Then my mum and my brother who I had not seen for around 3 weeks because he was ill and then he had a live flu nasal vaccination and was told to stay away came over and brought lunch which was excellent. We then chatted and watched youtube videos, and I introduced them to Sophia Grace and Rosie, Tyler Oakley, Sprinkle of Glitter and John Green. What would we do without these hilarious vloggers to entertain us? I want to be Sprinkle of Glitter, she is just so bubbly, comfortable in her own skin and she has a beautiful family- and she gets to shop in primark on a weekly basis. John Green is one of my favourite people- he wrote The Fault In Our Stars, an EPIC book about two cancer teens who fall in love and you guys should definitely read this if you haven’t already (like what have you been doing, living under a rock for the last two years?! But be warned it will make you cry like a baby. Multiple times. OK here are my favourite videos from them because I want to make sure you see these people if you are interested and don’t just forget!
John Green being hilarious on his visit to Vienna… http://www.youtube.com/watch?v=DFOXz_eNsAk&list=SP9EF0C1C9A93295C5
Louise and her ADORABLE daughter Darcy or ‘Baby Glitter’… http://www.youtube.com/watch?v=8hYN_LsJ3Rs don’t tell me 1.34 isn’t the cutest thing you’ve ever seen!
Tyler Oakley playing messy twister with Marcus Butler… http://www.youtube.com/watch?v=nCX6lvbCCh8
Enjoy!
Now I will sign off so I don’t miss the start of Downton Abbey! Night 🙂