Category Archives: Random

this could be anything. Watch this space!

Endless Summer

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Me again… checking in after an incredible s few summer months!

It started with a week in Cambridge University, where I completed a Biological Sciences summer school. This was such a privilege to be a part of, and probably the only time I’ll see the inside of Cambridge University as a student!

After a few weeks rest I flew out to Spain with a best friend from high school and her family, where we spent an amazing week snorkelling, kayaking, reading, sunbathing and eating more olives than you can shake a stick at. This was a lovely  week which I never wanted to leave (you can imagine our dismay in stepping out of the plane to be welcomed by the grey clouds and drizzle of home!) and am so lucky to have been invited on!

The next day I flew to Ireland for a big family birthday, we spent a lovely few days catching up and preparing for the party. At the party I ended up singing with my cousin which was a lot of fun, as well as dancing and having a great time. The hospitality and generosity of our Irish counterparts was amazing, and made our trip a warm and hilarious one!

It doesn’t end there I’m afraid! I flew back from Cobh to go straight on to my annual sailing camp, where the theme was the board game “Ticket To Ride” (cue endless train metaphors!) and I spent a great week with some of my favourite people. My birthday has been at camp for a few years now, but this year was my 18th, so it was inevitably more special. I hadn’t seen my family since Ireland, so unbeknown to me they borrowed a small boat and painted a banner saying “HAPPY 18TH BIRTHDAY BECCA”. During breakfast I was called onto the deck and suddenly the family were driving by with the banner and a klaxon! It was such a lovely moment and there were definitely tears in my eyes!

Now there is a brief interlude, in which I recovered from the craziness of travelling, threw my 18th birthday party and got my AS results (three As… I’m still shocked and not sure whether they mixed my results up with someone else’s…?!).

Next I took a mini-break in  Dublin with two of my best girl-friends, which was an absolute ball! We learnt how to pour the perfect pint at the Guinness factory, took a walking tour in the pouring rain, saw many of the sights and accidentally ended up in a lovely ukulele jamming session in a pub!

My final dose of excitement for the summer was returning to the sailing camp as a leader for the youngest age group. The theme was Despicable Me so we had 5 days of minion related fun DESPITE the rain, which we never let stop us. Once you’ve heard someone describe it  as “liquid sunshine” it’s harder to see rain in a negative light! Lots of my friends who were campers were leading this year as well, which helped to create a great team along with the centre staff. This was another week which had me praying that summer would never end, that the fun would continue forever!

I’m trying to remember how frustrated I felt in the year when I couldn’t go to college in order to motivate myself to finish the summer transition work and get into the mindset for returning to college. That mindset is coming back, but very gradually!

In other interesting news: I only have 3 doses of IV chemotherapy, 1 lumbar puncture and 1 bone marrow test left to go before the end of my treatment! The official end date is December 17th, just in time for Christmas!

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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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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.

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.

Pancakes and Pedalos

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Today has been a great day out in the sunshine!
This morning Gracie’s mum made us blueberry pancakes for breakfast, then we drove over to Southsea to go on the pedalos in a park by the seafront. There were people messing around with remote control boats and it all felt very like the Stuart Little in central park scenes!
Anyway, it was a fab morning, here’s a few photos!
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After that we had grandma and granddad over for a sunday roast which was lovely 🙂
I am really glad that the weather has still been nice and am definitely making the most of it before I have to go back to hospital!

The Lucky One (again!)

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THE COOLEST THING JUST HAPPENED TO ME!
Heather, one of my nurses, came in grinning and said “I’ve got a present for you!” Now when the nurses say ‘present’ and they are hiding something behind their back they normally mean an injection or tablets, so I wasn’t expecting much!
However, it turns out she bought me a Taylor Swift shirt because she went to the concert that I had tickets to but couldn’t go to because of hospital.

BUT IT DOESN’T END THERE! OH NO!
She even TALKED to Taylor Swift’s ACTUAL MUM (also known as Mama Swift) who asked all about me and the ward, TOOK MY NAME, was very CONCERNED for me, hoped that I didn’t lose money on my tickets and said to write to them so that they could SEND ME STUFF!!!!!! She was like “damn, I just gave my last tickets to the T-party away” (a post gig party where selected fans get to meet Taylor herself) and she said she would have loved to take my t-shirt and get it signed but she was worried she wouldn’t be able to get it back to them!

I am currently very happy and getting ready to write some letters, hoping that Mama Swift will be true to her word!

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.

Not A Lot Going On Right Now

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Today started off with a chat with Ed, then my toast made a surprise reappearance (what a waste of peanut butter *sighs*), then finally managing to get out of bed and shower. After that I sat back on the bed and have been here with the laptop ever since.
The best thing to tell you today is that I am officially HALFWAY through my intense months of chemo in hospital!!! chemo chart consolidation

Two blocks down, two to go!
My hair is getting really thin now and I am hoping it gives up the ghost soon. I know that sounds wrong but honestly you’d feel the same if yours was coming out so slowly! I was expecting it to go a little faster and now it just looks limp so I want it gone! I am quite interested to see what I look like bald too and I want to start using my beanie and wigs! Saying that, I also really miss when it was thick and long and alive… DSC_0148 I just don’t like it how it is now! My biggest hope is that it grows back curly, or at least a little wavy. Fingers crossed!

I will leave you with my encouraging Christmas card from Ed and Emily. DSCF5548

Misusing Wheelchairs and Winter Outfits Cancer Patient Style

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Making Excellent Use of A Wheelchair

Making Excellent Use of A Wheelchair

looking absurd walking through the hospital!

looking absurd walking through the hospital!

I’m now back in the hospital and have just eaten dinner with my lovely Godmother Maria.
Leaving home was difficult and involved holding back a few tears but as Maria and mum’s friend Jo were there I was really cheered up and didn’t have time to dwell on what was coming! It gets easier the more I go back and forth.

I am going to attempt to do my own nails tomorrow as my aunty is on a weekend away, so I will post them if they look any good!
By the way you can click on the photos and enlarge them in case you had been trying to squint at them- I had to teach my technologically challenged mum that this weekend!
Tata for now 🙂

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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!

Food Glorious Food

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I have had a really good day today, this morning I went for a tour around the blood labs. It was interesting to see where my bloods go in the morning, look at the amazing technology/ systems they have and where the stuff for transfusion is stored then matched to patients when they need the various products!
Then I got to see my granddad which was lovely 🙂 He bought me all this and more… I am a very happy bunny!
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chocolate, fizzy drinks, tinned fruit and brownies are always good!
No changes medically and nothing big coming up so I will post again soon to let you know how I am doing.
Adios!

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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Thriller Night

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Happy Halloween every one!
Every year before Halloween we are all forced to go on a family walk in Slindon. There’s a walk that has a fallen tree with loads of branches now growing upwards towards the sky which we’d always climb on, no matter how old we got.
Then you walk up and around a lake where there is a horse in a field that everyone stops and coos over (except me) and opposite this there is a house with lovely wide windows and a huge lawn area that would be perfect for summer garden parties! As you walk along church hill there are some gorgeous posh houses and quaint cottages, it’s so peaceful and pretty! There is also a sweet little bench that is set around a tree in the middle of the road- another thing we just have to sit on for a while, no matter how irritable our parents are getting as they try and coax us to walk more!
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Eventually we come to the pumpkin display! We’ve always called it ‘going to see the gourd lady’ and I’ve always pictured her sitting all grumpy up in her house while hundreds of people flock to the display, oohing and ahhing and arguing over which pumpkin looks the best. I don’t know why I have this image, she’s probably perfectly pleasant! They have an amazing variety of pumpkins, all different shapes and sizes and colours!
Slindon pottery also sell items they have made and we have been known to manoeuvre our parents into buying us a pumpkin shaped ceramic badge or postcard with lit up pumpkins on… items we never actually found a good use for!
They also create this brilliant display using different coloured pumpkins, here are some examples…
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Usually we cousins pretend to hate the walk, moan and sit down as much as possible but secretly I have loved it all these years, I am actually quite sad that I couldn’t go this year and spend the time with my family in our tradition, breathe in the crisp autumn/winter air and challenge my brother by finding a ‘better’ pumpkin than him or dad.
I thought I’d share my Halloween tradition with you as its the 31st today and whilst everyone is out partying or trick or treating I have to miss out on the festivities this year. We wouldn’t normally do anything on the night of Halloween except decorate the outside of the house with a pumpkin and sneakily eat the sweets between callers but this situation means I had to adjust and create new ways of celebrating. I have just followed the walk through the village on google street view, and Moira the ward sister decorated a basket with lights, tissue paper and fake spiders then brought round treats for the patients and in stead of carving a real pumpkin I was given one with lipgloss in and a chocolate one with smarties inside.

In the spirit of Halloween I’ll leave you with a creepy article to have a little look at…

http://www.crazyforlists.com/6-false-widow-attacks.html

Beautiful Girls

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Today I got an AMAZING opportunity! The charity ‘Look Good, Feel Better’ team up with over 40 big brands each year to create a make-up bag filled with lovely beauty products! These are then brought to the workshop for each patient and we get taught how to use each product, pampered and get to do a bit of experimenting on ourselves! Today there was two other girls having their make-up done with me and then another girl from the ward came to watch and have a chat!
It was so lovely to hang out with girls again! I’m stuck here with all boys most of the time!
There were some big names like Chanel, Estee Lauder, Maybelline, Rimmel, Clinique, Vinchy, Olay and Number 7! I’ve never had such nice make-up in my life!
Here’s a photo of all the bits and pieces (minus a very useful brush kit)…
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So I just added it up by finding the products using the boots website and have estimated that buying the make up from shops would have costed me £262. Seriously. And I got it all for FREE! Ooh and that’s not including all the brushes, which usually cost a ridiculous amount!
Also this happened on sunday morning and it was one of the nurses while I was in the shower, it’s so cute!
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So for the rest of today I have watched Prison Break non-stop (someone lent all 4 seasons to me and I AM ADDICTED! just finished season 1!) and had a great visit from Gracie 🙂
Hope everyone is well, missing you!

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 🙂

Signed, Sealed, Delivered.

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I just want to say a huuuuuuuge thank you to everyone who has written/sent me things to the hospital! I know some of you read my blog and even if I haven’t got round to writing a thank you note yet (yes, mum still makes me write them straight after, cancer ain’t affecting my manners!) I want you to know how much I appreciate it!
I’ve also had letters from many people at church which was lovely, I can’t wait to be back as soon as I am well enough! I really valued the wise words from Grace and Hope and Grada and I love hearing hilarious stories from Emily H’s work! That is just to mention a few, I have had many and they all meant something to me. I am so thankful that through Jesus I have gained the most caring and wonderful second family! UGH. doctors are here, be right back…

Aww, Debbie is back as the main consultant and she’s really lovely, she is a motherly figure which is good as she treats you like a real person with feelings and not a walking talking blood bag who asks annoying difficult questions! (My doctors have all been lovely by the way, and one is rather dishy but sometimes they can’t help being a bit out of touch, it’s all about my levels and treatment and it doesn’t help that I just turn the whole thing into a confusing mess by asking weird questions and not being able to put into words what I want to say!) Ok, ramble alert! Sorry, this wasn’t meant to have so much writing!

So anyway, my next thing was to say if uncle John and aunt Rebecca are reading thank you VERY MUCH for the books (you know me well!) and I will solve the mystery of the book that hasn’t arrived yet, I’ll let you know what happens!

It just really tugs at the heartstrings to see the things you have written and feel connected even though I am shut up here, I know it sounds a tad soft and borders on being sad but it’s a charming feeling when a nurse brings in some envelopes and I get the excitement of wondering who has written then the joy of hearing what they have to say! So I won’t post the address blindly onto the internet for all to see because you never know what sort of whacko is reading this and I don’t want to be sent anything creepy like body parts or human hair but if anyone else wants to write you can contact me through the blog or ask someone you know writes to me, I would love it! (I am rather a fan of a written letter, I’d take letters and books over email and e-readers any day.)

Woah, just saw my first lightening storm and heard the wind and the rain against the building for the first time in a while! (Again I stress how dull it is being locked up in here!) I’m off to enjoy the bad weather and have a lovely evening with my godmother, buh bye!

Same Old, Same Old

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Still waiting for the missed lumbar puncture, am getting a bit tired of all the miscommunication, waiting around and most of all the peripheral blood tests… leave my poor bruised arms alone please!

We are moving on with the chemo, some nasty drugs which make me feel ill but are all for the greater good so you have to grin and bear it. I’m not due any drips until Thursday so I get a couple of days off at the moment which is nice.

Today I was ashamed to admit to Ed that the highlight of yesterday was watching a DVD whilst lying in bed, (actually it was a game of pool and having a visitor but I had forgotten that at the time) so I have tried to do some different things today… i.e. blogging and watching youtube videos. Oh life is filled with excitement!
Have decided to use this down time wisely and acquire new tricks and talents such as learning all of the states of America by heart and being able to recite them. Will update you on how this is going and maybe upload a video when I can chant them fast enough for it to be impressive (this probably sounds ridiculous to you but I think its quite exciting. See, your perspective on everything changes when something like this happens to you!)

That’s all to tell apart from this weeks nails, they are pink butterfly wings and are so pretty!

A Relatively Quiet Day

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Dad and I are having a lazy day today because this morning began with me rolling around in pain, feeling like my stomach was on fire. We couldn’t work out why and took some oral morphine in the hope that it would ease my shoulder pains, until Holly came in to attach an ECG machine to me and oh! There we go, sick time! Holly was lovely and held my hair out of the way, I felt bad that she had to witness it but she was fine and helped get a doctor to speak to me and discuss what to do about the anti-sickness drugs I am on (because they clearly are not working!).
So then I had my ECG, felt a bit like a Frankenstein or Doctor Octopus with all the stickers and wires hooked up to me.

That’s all there is to report really, I told you that Ed has been sent home on his maintenance so we don’t get to have a chat with him each day any more but his girlfriend Emily came to see me last night which was really sweet. It’s always good to talk to them as they know exactly what we’re going through and how we feel.

Adios!

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!