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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.

 

I’m Back (and so is my cough)

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I am ashamed to admit that I’ve gone two months without a blog post! Sorry for leaving you in the dark… life got busy with christmas, constant colds, socialising and January mocks.

I’m happy to report that I got ABB in my AS mocks, a better result than I had expected! My key with mocks is to have low expectations- then I’m usually pleased by the outcome!

A few weeks ago I had another dodgy lumbar puncture, so now two doctors have struggled to get the sample. This is usually OK because I can’t feel anything, but this time I could feel twinges in my back every so often. Thankfully the next one isn’t for another 3 months so I endeavour to put it out of my head!

We had another CLIC Sargent/ teen and young adult meal out recently which was great, it’s always fun to catch up with friends from the ward and see everyone doing well. It was held at an american restaurant in Gunwharf so was a good night out of Chichester for me and my friend Zoe.

My immune system has definitely been suffering from the maintenance chemotherapy recently; before everything I was one of the people who never became ill. Now it seems that during winter I am destined to pick up every cough, cold or sore throat around! Vicks vapo-rub and soothers are my new best friends.

A few exciting trips have been booked for this summer: a friend invited me to Spain which is going to be really lovely, then with two of my friends who are heading off to Uni we decided to do a couple of nights in Dublin on mini-break which will be a laugh. I’m feeling pretty blessed at the moment!

The specialist nurse has told me that my end of treatment is set to be December this year. We had thought it would be August, but apparently there are other conditions that weren’t explained before. Its annoying but I am used to the maintenance treatment, the way I see it is that it’s not that I am starting anything new/bad. This means a new countdown, so my final bone marrow will be in November and last chemo should be around December 17th. 17 months down, only 10 months to go! (Yes, I know 10 months is a long time but having more behind me than left to go is a better feeling!)

Burning Up (and Burning Out)!

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Today I had to go into Howard Ward again, as a chesty cough I have gave me a couple of high temperatures and a fever in the night which continued this morning.

After a couple of hours of sitting around in the ‘stabilisation’ room (a scary room with an incubator, dentist-style chair/bed, defib and many more freaky medical things) the doctors gave me an examination.
Overall everything seemed fine, the only problem was the cough. Because of my condition and treatment they decided it would be best to do some bloods (which involved a cannula *shivers*) and send me down for an X-ray to be sure that my chest was clear.

After that I felt pretty tired and tried to nap awkwardly in a chair, while we waited for the final decision and some drugs. Luckily I only have to have three days of an antibiotic called “Azithromycin” …. good luck trying to pronounce that! Honestly, I don’t know how they come up with some of these drug names.

I am taking a couple of days off of college to prevent myself getting any worse and because I am quite run down today. Yesterday my English teacher joked about end-of-term-itis; but if that was a real thing I would definitely have it!
I am really looking forward to the Christmas break and the time away from college to focus my studies again and do some major rest! I’ve been doing a lot of stuff recently and it’s taking it’s toll on me now. I need to learn to slow down!

from a sniffly & tired Becca,
goodbye!

This One Doesn’t Have A Cool Title

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Three months into my maintenance chemo and last weekend I finally managed to take EVERY SINGLE ONE of my tablets, at the CORRECT times. This may seem a bit ridiculous but I have quite a few medications to keep up with, plus sometimes if I’m out I will miss an odd anti-viral here and there, as well as having to make up for a dose of my antibiotic late if I miss it.

I’m now firmly settled into the routine of going up to the children’s ward for my IV every month too. Last time my consultant and I even had a big heart to heart, which I really valued. It took them a while to get used to me knowing about my treatment and for them not to interact with me through my mum, but they are great now.

My half term was a rather chilled affair, I probably could have done more studying but equally I loved having the week to socialise and not stress. I was on the steroids as well so it was the best possible week to be all zombie-like in!

On the first of November I had my first ever driving lesson, which went better than I was expecting! Dad and I had gone to a car park to practise the day before (and managed not to fall out, which was a feat in itself!) so I felt quite prepared. I didn’t think the instructor would trust me to drive home on the first go but I made it, despite one unsure moment when I couldn’t work out why the car was making so much noise when I wasn’t moving (no it’s not broken, now foot OFF the gas!).

The college took the English Lit students on a trip to the globe theatre in London which was interesting- the best part was just hanging out with the people from the group and getting to know everyone a bit more!

Somehow a year has passed and we are back round to my brothers birthday. This time last year we had a lovely family day in the hospital playing pool and board games, I had my thinning bobbed hair and skinny but weak legs! I was stuck in hospital 35 miles away as they all went out for dinner without me, so that night I felt pretty frustrated with my whole situation. I don’t know if I will ever stop saying how brilliant it feels to be free from most of that limitation, because it still hits me whenever I think about it!

I use “most” of the limitation because I did have a blip the other day when I was walking home, limping from some weird muscular pain. I blame the steroids and their mood swing effect! You can’t help those moments when you just have a rant to yourself (or others) about how unfair it is that you have to go through this and suffer from the stupid aches and side effects and lose the hair you loved so that you have to go around with stupid short hair that doesn’t cover your ugly head shape. Well I don’t know if any other sufferers think like that but this is the inner monologue that happens to me! By the way, I should mention that I have nothing against short hair, I just REALLY miss my long bright blonde hair! It’s cathartic and necessary to get your feelings out in the open. On the plus side of it all, my hair is coming back decidedly curly, which I am so excited for. I am anticipating a full afro. Watch this space!

Aside from the angry zombie persona I become once a month everything is going fabulously. College is brilliant, I’ve met some great people there and am finally out living a proper life!

“A Haematological Sandwich”

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Well folks, I was up at 2:30 in the morning last night, so what better to do with that time than blog? The majority of my posts last year in hospital came from ridiculous times because I was wired from the steroids. The catch this time? I’m not even on them yet, I have that particular joy to look forward to on Tuesday. Grrr!

Anyway, today’s post isn’t all me being sarcastic. This next bit is actually quite serious, so get ready. (I often find myself warning people before I depart bad news nowadays as when I first found out about the whole leukaemia thing I sprung it on my Aunty and best friend over the phone- without any preparation. It was a pretty huge shock that I am not sure they appreciated!)

In the past week, my grandma (Olive) has been diagnosed with a blood condition, hence the title of this post. The first thing mum said to me after she had explained grandma’s situation was “What with you and now your grandma, I am stuck in a haematological sandwich!”. What are the chances eh? She’s been having back pain for around 9 months so one positive is that it is good to finally have an understanding.
Her treatment should actually make her feel better once it starts and she doesn’t even have to stay in hospital, the lucky woman!

I think that some of the things we have learnt through my experience gave us a little more knowledge and also helped us feel slightly less worried about it all.
Personally, my experience helps me to know almost exactly how she feels. One night I went to see her at her house and she wasn’t feeling great, which brought back all the times when I felt weak, pained or tired. Having this perspective allows me to empathise on a much deeper level.
I will keep you all updated from now on about both grandma and I, but thoughts and prayers are much appreciated!

Onto a more positive note, I got to go to the pumpkin display at Slindon twice this weekend, once with family and once with a friend. Anyone who was reading the blog around this time a year ago will remember my reminiscing on Halloween and firework night traditions, and moaning that I wasn’t able to join in that year.
Well, a year later and I am running around in the woods (because who isn’t still a big kid inside) and carving pumpkins to my hearts content. I’ll say it just one more time, I promise, but it’s so amazing to be at the opposite of where I was a year ago. I am constantly reminded that there is always light at the end of the tunnel!

Best wishes for half term everyone, enjoy!

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Another Throwback

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Hi guys. Sorry it’s been a while!
Like I said before, life is kind of the same now with college, medication and socialising so it’s more difficult to write an interesting blog post for you all!
I have just had my monthly dose of IV Vincristine which went smoothly. That was followed by the 5 days of steroids which actually felt much better this time around, I wasn’t up in the night too much and I didn’t want to eat everything I saw for a week (thank goodness!). I felt pretty exhausted today but it is wearing off so tomorrow will be better!
I know I say things like this a lot at the moment, but I really can’t get over it… exactly a year ago today I was escaping hospital for my first EVER day at home. I’d been in hospital for one and a half months and could count the number of times I’d been out of the ward on two hands (if not one!). It still hasn’t lost it’s meaning, every time I walk somewhere I appreciate the freedom and fresh air so much more than before! I know the collage is bad quality (I had a terrible phone camera at the time!) but it is me escaping, the first time I stepped back into my bedroom at home (one of the happiest moments!) and my first local trip down to Bosham…

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On a sadder note, recently some people close to me have had possible cancer diagnosis’s/diagnosis/diagnoses (can someone who does English at a higher level tell me the plural of diagnosis?!) and are waiting further tests and results. It’s scary as it’s supposed to be a fairly rare thing. You can’t help wondering where the justice is sometimes, especially when it’s a type of cancer that you can’t prevent yourself from getting. I’m not saying that people should be wrapped in bubble wrap and living in fear of cancer, because that’s not what was intended for us. It’s not life to the full. Sure, there are things that you can do to cut down your risk which are just sensible but (in my opinion, you are totally allowed to disagree!) letting fear govern your life is pointless. My attitude when I was diagnosed immediately became “what happens happens. I can’t do anything to change this so I just have to get on with it” seriously, it was almost freaky how much in my head I just accepted it! Yes there was crying and frustration, it would be abnormal if I didn’t feel that way at all, but having an amazing support system helped me incredibly.
I’ve kind of brought myself to an accidental point here (how convenient), and in my case it applies to most of you who are reading this… never underestimate the power you have as a friend. Not just with a cancer diagnosis, I am sure any situation of need can be transformed by people’s kindness. Cards, texts, prayers, visits, meals… I’ve mentioned this list so many times because I want to emphasise how much everyone’s show of support meant to me. I guess I just want to say you guys are amazing and you all make a difficult thing a whole lot easier to deal with!

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.

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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.

Just Married (NOT ME!)

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** WARNING! due to photos and my ability to ramble this is going to be a long, descriptive post!! **

I mentioned we were down in Bath in my last post, but I haven’t written one to talk about the weekend yet. On Saturday morning we woke up early, so we managed to squeeze in the Roman Baths and an open top bus tour before the wedding! I enjoyed seeing the Roman Baths, as a previous Latin student it’s a place I had heard quite a bit about and wanted to visit. The steam coming off of the water was eerie, mum even stuck her hand in to see how warm it was (I then overheard a guide telling another visitor to make sure she washed her hands straight after as the water contains so much bacteria. At that point I was very relieved that I had decided not to put my hand in!)

The architecture of Bath is just beautiful. It is largely filled with Georgian town-houses for any of you who haven’t been, but places such as the Roman Baths and the Abbey with its Gothic look are some of the reasons that Bath is the only city in Britain that has been made a World Heritage Site. The open top bus tour showed us many of the highlights, but simply walking around  the streets of Bath offered us some lovely sights. We happened to be there on the day of a Jane Austen celebration, which we didn’t realise but I had a suspicion that something was happening as there were an abnormal amount of people in period costumes when we went around on the bus. Just as we were rushing back up to the hotel we saw a gathering of people so we stopped to see what was happening. I am not exaggerating when I say that there were HUNDREDS of people dressed in Austen outfits, all in a giant parade down the main street. I’ve never seen anything like it except the parades at Disneyland! There were children, the elderly, men, women and even the ‘militia’ coming down the road. As an avid Jane Austen fan I loved it, and since we didn’t realise just how many people there would be we stayed a little too long watching, which took away from our getting ready for the wedding time!

Trying to make a collage ruined the quality of the photos so if you click on a photo the slideshow should appear, let me know in the comments if it doesn’t work!

Soon enough we were in the taxi heading to Frome for the wedding. The first venue was a lovely converted chapel on top of a small hill in the town, it is now an art gallery but can be hired for weddings. The ceremony was lovely, and I’ll admit I shed a tear at the vows!

After watching the bride and groom, Ed and Emily, sent off in a gorgeous old car we slowly made our way to the reception at Batts Farm. This was a barn with a smaller room leading into a high ceilinged main room where the tables were laid. Both looked absolutely beautiful, the smaller room was filled with fairy lights, bunting and the bar, and the bigger room had the tables in a U shape with mismatched table clothes and colourful wildflowers on the table, as well as bunting hung from the tall wooden beams. Each seat had a piece of slate with our name written on and some seeds to plant as a favour- such delicate and lovely touches! Outside there were hay bales with blankets set in circles for people to sit and chat on, along with even more bunting, this time made by the beautiful bride, Emily!

The rest of the day was filled with photos, excellent food and bouncing on the bouncy castle- props to Emily who managed it very well despite the wedding dress! One of the nurses who no longer works at Southampton had come down for the reception so we got to catch up on everything.  And yes, I did tear up at the speeches, I tried not to let any loose but when people get emotional like that then I am gone too! Mum and I had the loveliest day despite being nervous because we didn’t know many people, which didn’t even matter because everyone we spoke to was kind and welcoming (even if they didn’t know who on earth we were or why we were there- an interesting one to try and explain!)

I thoroughly enjoyed the live band, it was a mix of country and bluesy type music I think so we all had a great laugh twisting, kicking and (attempting) jive like moves! They also had a lovely group of three musicians who were playing as people arrived for the reception, it made a sweet atmosphere whilst we sat in the evening light on the hay talking.

On Sunday it was mums birthday so I took her out for a birthday breakfast at Carluccio’s. We then did some shopping (or in my case, a mammoth amount… they had a Primark… I couldn’t resist!) then we caught the train home for a BBQ dinner with the cousins. I had such a lovely weekend and will definitely be returning to Bath in the future!

My bloods are still fine so far (touchwood) as my Hb was 113, Platelets 116 and Neutrophils 3 this Tuesday. Later in Human Biology we are looking at samples of our own blood that we took on Monday, so I am really interested to see if mine looks any different to the healthy people in my class! The only other news is that I am on a serious health kick after Bath and my steroid hunger, college gym here I come!!! Hope you enjoyed the photos, there are more on my facebook in case you are curious or haven’t already seen them.

A Walk Down Memory Lane and a New City Adventure

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Just to highlight that I am not all doom and gloom, this week of college has been lovely! Last week’s post came from a steroid-induced-anger filled place so I was not feeling all that positive. Once the dark mood wore off and I resumed a normal sleeping pattern I felt back to normal again!

Lessons have started properly now and today I was thinking about how much I am loving it! Being back in education, in the classroom surrounded by new people with a purpose and a goal feels better than I had expected.
Ask me again around Christmas time when I am revising extensively for my mocks and I’ll probably tell you a different story, but for now I am living in the moment and enjoying everything as it happens!

This week I went back to my high school to say hello to my old form tutor and head of year who is going on maternity leave. We’d been saying all year that I might pop in but now I am finally well enough! Quite a lot had changed which was fun to see, but many of the places still looked (and smelled) the same! It was nice to bring back some funny memories walking my old route and through those familiar buildings!

This evening mum and I caught
the train down to Bath for the weekend as I was invited to a friends’ wedding. I have never been so am looking forward to exploring a new city! Our train was cancelled which led to an hour delay, so we couldn’t do an open top bus tour of the city which was a shame. We had a lovely dinner at Jamie’s Italian and walked around the block. I am a total city girl, I LOVED going around Sydney and New York on past holidays so I can’t wait to do more exploring tomorrow!

Back to School

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Today I had my first day of college, which couldn’t have gone any better! I already knew some lovely girls from enrolment day, so we all bought our friends over at lunch and had a fairly big group of us to get to know. Despite my year out I didn’t feel too dumb, I found that the GCSE subject knowledge came back to me easily. One bonus was that they asked where blood cells were made… only the place I’ve been hearing about and having taken out of me for the last year!! A year ago today I was having my central line put in, it’s amazing to reflect on how different life was looking for me and such a relief to be finally starting college. In my 5 year Q& A a day journal the question for today was “teacher or student?”. Last year was an upset response about not starting college and it’s a great coincidence and joy to be writing student in the box today!

I had Human Biology and English Literature, and though the lessons are an intense 3 hours long you get a perfectly timed break in the middle. One tutor had planned every single lesson and printed us a booklet describing what we will learn, every practical and when tests are throughout this whole academic year which was amazing! For someone who also needs to arrange blood tests, lumbar punctures and chemotherapy this is really useful.

On a high from such a lovely day  I continued into town to meet two of my best high school friends for coffee, where we had a lovely catch up. We had so much to say that it was pushing on closing time before we left!

Another recent thing that I’ve been up to was helping out at the sailing summer camp I’ve mentioned a few times. In the daytime I helped out in the kitchen and in the evenings I helped to lead a discussion group with a friend of mine who I’ve done camps with in the past and who has done a gap year at the centre. It was an amazing opportunity to share my testimony, and though the kids were quite confused when I came in without my wig on (I got asked about 3 times if I’d cut my hair overnight!) one of the boys asked a load of mature questions that I think they all secretly wanted to know but didn’t want to ask! It’s the kind of opportunity I have been waiting for ever since the first week I was diagnosed so it felt amazing to be sharing my experience in that way.

The theme was circus which was really fun, on Thursday we did a night of circus/freaky talent type things, which I think at times some of us leaders enjoyed more than the children! Silly cheese jokes for the win!! One of the evenings the power cut out, it started slowly around 4, so we began cooking all the chicken to make sure it was all ready in time. Though it was really stressful it was also quite exciting, the galley and activity staff all pulled together to make it work!

I had such a great week working with old friends to give the children an awesome experience which I hope they will always remember.

Today’s blood results were Hb 114, Platelets 110 and Neutrophils 2.6, so those neuts are looking a little low, I really hope they don’t drop too much after chemo as I don’t want to have to miss college.

Tomorrow I have another full day of college then some more IV chemo, but after that Ella and I are off to a “cancer perks” dinner. CLIC Sargent do socials where they take me and a plus one  for dinner and pay for our meals! It’s a great way to keep in touch with friends from the ward, meet new people, have a laugh and most importantly, get free food!!

Here Comes the… Winter

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The summer seems to have passed so fast- it feels like only yesterday I had a whole two months of freedom stretching out in front of me, and now it’s almost over!

My first wedding of the summer- Ellie and Mark’s big day was really lovely. It was a surreal but brilliant mash up of the people I know. On one side many of my church friends and family were there, but since mum has worked with Ellie’s mum, Helen, for years, I have known their family and mum’s friendship group from work as long as I can remember (and even before then)! We had a great night at the reception held at Lavant Village hall, with plenty of dancing and chatting! This is my friend Hannah’s photo of the newly-weds, and one of my photos from the night…

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On Friday I had to go back up to Southampton for a lumbar puncture (where they put some chemo in my spinal fluid) which was fun for the first half (I’ve never been so high on the gas and air, it was brilliant!) but then took a turn for the worse (a bit like when drinking alcohol, on entonox you can go bubbly or get upset and cry apparently!). So the doctor was new to Southampton, which means for her first few LPs she has to be observed before she can get onto their register. She’s done it loads before, it’s just a new hospital for her and I think because we’d never met before she was nervous and couldn’t seem to find the spot.
What made me get upset is when the more experienced doctor said “if anything you’ve probably gone a bit too far!” when guiding the new reg. This is not something you need to hear when you know there is a long, thin needle sticking somewhere between your vertebrae. I was imagining her poking it into my bones or something ridiculous, and I had to try and curl up even more for her and stay still, so my head was on my chest restricting my breathing and my knees were up as high as possible! I find the best way to get through the LPs is just close your eyes and try not to think about anything!

Sadly this week we said goodbye to our great discussion group leaders, Chris and Rachel. They’ve hosted us nearly every Sunday night for the last year, putting up with our awkward silences and a giant whiteboard dominating their sitting room wall but it’s been brilliant! We had a good night of funny games to say good bye and hello to our lovely new leaders, Chris and Lou.

This week I am off to CYE again, helping in the galley and possibly with the discussion groups. I am excited but nervous too, as I know first hand how much the things you see, experience and learn at CYE can change your life so I want to be a good example and someone that the kids feel comfortable talking to. I’m really interested to find out if it’s something that I am good at as that might influence my future! Will probably not get time to post on the blog until the end of the week, but please be thinking of me as I also have college enrolment which I am super nervous for (I’ll be the one sitting on her own not managing to make any friends!!!)

On Cloud Nine!

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Hi!
Just a quick post because I have had a lovely day and evening I want to fill you in on.

Earlier me and Gracie went to a “pick your own” farm where we walked around the orchards in the sunshine and picked some plums and apples. In the farm shop we got a punnet of strawberries then sat and ate them under a large tree, it felt so summery and peaceful! We had a good two weeks catch up to do which was great.

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Then this evening I am very proud to say I made it through a whole hour of mum’s Zumba class without stopping. This is quite a step for me as I haven’t done that much exercise since diagnosis! On the other hand, I was nervous since exactly a year ago I went to a similar class and almost passed out.
That evening 12 months ago I had no idea I was ill, but it definitely brought out the symptoms. I am told I went deathly pale, and I know I felt like I was going to throw up any minute- which I knew wasn’t right because I would exercise for 2 hours in the gym every week and not feel even remotely like that.

It was quite a scary and embarrassing event, and it was the first time I didn’t feel in control of my body.
That’s one of the things you lose with cancer through no fault of your own- your body has “malfunctioned” if you like and started producing the wrong kind of cells. The fact that I had no say in the matter and no way to make it better except take round after round of what I knew were going to be unpleasant drugs was quite a daunting prospect.

Tonight I was in a totally different place from last year- I was energised, motivated and finally I know what my body is going through this time around, so I know when to stop and rest. It’s one of many times recently when I haven’t felt held back by my condition. Don’t get me wrong, there are still times when going into hospital or arranging appointments frustrates me more than I can explain, but I am choosing to let the positives outweigh the negatives. This is something I have always strived to do throughout the last year, and really has helped me through every single day.

I can’t explain how amazing it feels to be where I am now: almost back to normal, despite starting another year of chemo. I can do so much more than I have previously been allowed to. I am looking forward to starting college in a few weeks time, attending two weddings in the next month where I don’t have to worry as much about who in the crowd is ill and doing more work at the sailing centre at the end of August.

Life has never seemed so full or so positive for me and I can’t wait to fill you in on this new leg of the journey!

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!

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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!

That Summer Feeling

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Hi! I didn’t do a post in the past week because I didn’t even get a chance to turn my laptop on! That might sound like a teenagers worst nightmare, but it was actually totally refreshing and I didn’t mind one bit!

So, “what was keeping you so busy?” you may ask! I was volunteering at CYE Sailing Centre- a place that my friends and I have been going to every summer for the past eight years. I was doing food prep in the galley but also got to stay for discussion groups and a couple of nights with my friends. We usually only see each other once a year so the time is precious and we all have such a great laugh. The week challenged me in a few different ways which was really great- I did more work than I would normally do in a week so I built up my stamina again!

I got to join in one of the big games with everyone- in the dark we had to get a blown up balloon safely from the back field onto the ship, fighting past defenders who were trying to block our progress. Normally I am the LEAST competitive person and I take a back seat in these kind of games, running limply for a bit then letting myself get caught out, but this time I threw myself into it full force- laughing and running hard and succeeding both times! It felt amazing and I was giggling the whole time!

On Friday there was no time for post-camp blues, as that evening we went down to Horsham for a family friend’s 18th birthday. We couldn’t stay the whole night but we got to witness Joe buying his first round of drinks and have some hilarious catch ups with the Stack clan! (My godparents and their family).

At midnight that night we got home and I hastily packed for Devon, where we have arrived today with my cousins! The house we have rented is lovely and Beer, the village we are staying in is so quaint. Will do more updates as we explore more!

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Summer Paradise

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At 7pm on Wednesday night I was picked up by Gracie’s mum Jo, blindfolded and driven to a mystery location for my birthday surprise evening! It turned out to be a lovely barbecue on the lookout area behind the Trundle Hill (some of you hardcore blog readers may remember when I went there with my aunty for a picturesque lunch and in stead the landscape was blotted out by the bad weather, I put a photo up!). The view is stunning and it is one of my favourite local spots. We stayed up there for a few hours chatting and having our meal, I had a really great time! It was so lovely and thoughtful of them to arrange it for me 🙂 There really is nothing like the smell of a lit barbecue in summertime! Here are some photos, but it has been confirmed by my brother that I “don’t take a nice photo” so I apologise for how awkward I look!

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On Thursday we went to the beach, and I had such a brilliant day! As my line was out I wasn’t panicking about it getting sandy or wet and since the wound has almost fully healed I went for two ACTUAL SWIMS in the ACTUAL SEA! Usually I detest swimming and wasn’t bothered by not being able to go with my line in, but it was such a lovely day and the sense of freedom was amazing. I appreciated it so much more than I would have before diagnosis. Using factor 50 sun cream I managed to stay in the full heat of the sun for 5 hours without burning at all! West Wittering beach was crammed with people, which you can see if you look towards the left side of this photo I took…

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This Friday I went to Southampton for what I thought would be the start of my maintenance treatment, but ended up just being a bloods check and a catch up with my consultant. I wanted to get it all under way, but I prefer to look at it this way- no poking around to try and get a cannula in my tiny and buried veins, no chemo and I didn’t have to spend a whole day in a stuffy room, that equals a victory for me!

I loved that as I was saying goodbye to a friend who is also having his line out and moving onto maintenance at the same time as me (although he was only diagnosed in January- how unfair is that?!) we both warned each other at the exact same time “Don’t do anything mental/crazy!”. Even though we can be more normal now we were reminded by the specialist nurse today to be careful and remember that a) our bodies have been through a lot b) we will still be on oral chemo every day. To be honest I don’t think that’s going to stop us doing much, unless our immune systems are REALLY bad!

My maintenance phase is set to start some time next week at the local hospital, I don’t know exactly what these doses are going to do to me but I have a party, my birthday and volunteering at CYE Sailing Centre to look forward to!

Family Affair

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This past weekend saw our annual family get together. A gang from mum’s side of the family all come down to our house for a meal and a catch up. We call it “D’Arcy Day”!

Despite the usual panic over the weather (which began with stressing about rain and then turned into will we be too hot and not have enough shade!) plus a tense few hours of the fridge playing up in every way it possibly could the day went smoothly overall! I don’t know how to describe it, basically we all sit around chatting, drinking and eating in the garden. I put up some old photos for people to have a nose at and organised a photo scavenger hunt for the children to keep them entertained.

I had only seen one of my more distant D’Arcy relatives since my diagnosis so it was great to catch up properly with everyone. I found that it was really lovely being free from my line and any treatment because I felt normal and the whole thing seemed like it was in the past. I don’t know if I am putting it into words well enough, I mean that I didn’t seem ‘ill’ and people weren’t pitying me and going “oh, she’s the one who had cancer”.

Anyway it was a beautiful day and here are a few photos…

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I was meant to have a rest day after that as I have a busy three weeks ahead, but in stead I went out to lunch with the Irish ladies (Grandma Olive and Mary, featured with their brothers in the top left photo) and my aunty.

On Tuesday I went to the cinema for the first time in forever after a lovely picnic with my friends so that was really fun! I went to see The Fault in Our Stars which I really liked. I thought that the film stayed really faithful to the book and the parts were perfectly cast. I also thought that they captured the mix of “cancer life is rubbish” and “lets make jokes out of this because we can” well and I really related to some of the poignant moments in the film.

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My birthday is 7 days away now which I am excited for, I don’t know what exactly but it sounds like Gracie is planning a nice evening of fun birthday stuff for us tonight so that will be lovely. I am going to be at CYE for the third year running on the actual day, but this year I am helping out rather than going as a camper so my family get to see me in the morning and evening.

Hold the Line

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My central line removal finally went ahead today. I can’t quite believe it and I keep forgetting that it has gone for good!

The removal took longer than planned, the doctor said that there was some really tough tissue around the line that was holding onto it which became quite tricky to separate! He injected a load of anaesthetic, then using a scalpel and forceps just cut away at the bits of tissue for around 40 minutes! After he had started I was wishing I’d asked for gas and air as there were quite a few sharp pains throughout, but the doctor was really helpful as he put more anaesthetic in whenever it felt too bad.

I took a comparison photo, one of the line so you could all see what the whole thing looks like and even got one of me holding the line once it had come out so here are some of those… if a little bit of blood will make you feel ill then don’t look right!

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Afterwards we headed over to have a cuppa and catch up with a friend and fellow patient who is staying in a flat opposite the hospital while she undergoes her treatment. We sat out on the roof terrace and had a good old natter about all things Leukaemia related which was great!

It already feels lighter not having the line dangling from my chest but it will be more comfortable in a week once the stitch has been removed! For the moment I am using Paracetamol to dull any pain and hoping that there won’t be a load of bruising when I wake up tomorrow.

The Course of Hospital Procedures Never Did Run Smooth

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So today’s blog post was going to reveal some exciting news (and therefore excuse the fact that I neglected in writing as much last week). The plan was to have my line taken out and I thought I would surprise you by keeping it a secret until after!

*Now go back and read the title again…*

As you may have deduced just then, said removal was not completed. The consultant at Southampton wasn’t happy with my bloods yet, they need to be higher and stay up for it to be safe to take the Hickman line out. I don’t mind as I know it will happen sometime in the near future, another week doesn’t make any difference to me; I’m certainly used to it’s presence!

I don’t know if everyone experiences this but for me my thoughts and feelings about the line coming out are bittersweet. Just thinking about all the lifesaving blood products and drugs that they have given me via the Hickman makes my brain hurt! Without it I will need a fair amount of cannulas over the next year for my chemo, plus needles for the ever delightful peripheral blood tests. Also the line has been a part of me, not one that can be easily hidden or ignored since it’s been on my chest opposite my heart for 10 months and to be honest I can’t imagine it not being there! There are so many good things about it coming out though: no more worries about the infection, being able to wear nice tops again, not wrapping it up for the shower, not having to look at it coming out of my chest (which still feels wrong!) but most of all the closure. Like my final intense chemotherapy a few weeks ago, it is one of the milestones I have waited for and one of the keys to feeling normal again. In my head it feels like a confirmation that I am better because I don’t need it any more.

Anyway, the removal has been postponed for a week and the community nurses are going to test my blood a couple of times so we have a picture of what is going on. Hopefully everything will keep increasing in the next seven days so that Tuesday the 15th will be THE DAY!

I’m aware that I didn’t do a post to inform you all when I got out of hospital which was bad of me! You know from my last post that I wasn’t having the best of weeks, so ever since I got home I have been caught up in positivity and being free (the definition of ‘free’ being “sat in my room watching all six seasons of  Gossip Girl”). Just kidding, I have done a little more than watch Netflix, I promise. It was my grandma’s birthday the day I finally escaped from St Richards, so it was great that I could be home for a lovely family dinner. I’ve also met a few friends in the park, though my counts are on the way up I’m still not supposed to be around crowds of people yet so the open air is perfect.

In other news, since it is now July the countdown to my birthday has begun. 22 days to go!

I will keep you updated on the plans for the line removal next week,
sorry for leaving you in limbo and not telling you when I got out of hospital. I think I was subconsciously avoiding writing about it because I’d totally had enough and was putting it out of my mind!

Just Feeling Rubbish in Hospital

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Today started off really well as I felt better and actually managed to shower, dress, apply make-up and put my wig on (one of the nurses said that when he saw me he didn’t recognise me, he thought “that must be Rebecca’s sister” because he saw a resemblance!). I ended up moving into a room with it’s own bathroom as my immune system is still down and I can’t have a bath with the line they don’t want me sharing a toilet and I should have my own shower.

I got to see the red arrows from a distance, craning my neck out of one of the windows. Not ideal compared to being in our garden at home where they usually fly right overhead though!

Then it took a turn for the worse as one of my old pains has come back again since I am run down and missed a few medications. This actually made me cry with how uncomfortable it got, so I had to speak to a few doctors and get some new pain relief and treatment going. One thing I have to try is an inhaler, I know it sounds ridiculous when you look at everything I have done to me but the thought of inhalers makes me so uncomfortable! I used to watch my mum and brother taking them and cringe.

Along with pain and tiredness I got very emotional and upset *queue ugly crying and nurses gathering* because I am totally frustrated with everything at the moment. I am sick of being in constant pain, feeling weak, being stuck in hospitals all the time (I know the phone numbers to both hospitals along with my ward extension numbers- a sure sign that I need a break!) and not having a normal life. This was meant to be my week of relaxing, recovering from chemo and looking forward to getting my line taken out but  instead I get to feel rubbish in hospital. To cheer me up the ‘play nurse’ gave me the wifi password and a stack of Disney DVDs to keep me distracted. If stuck in here all weekend I am having a Disney marathon by myself. I just finished How To Train Your Dragon (which I was pleasantly surprised with!) and am starting Frozen next, which one of the kind-hearted nurses asked her daughter to bring in for me!

I took quite a bit of pain relief including my good old friend Oral Morphine as well as some anti-sickness as I felt queasy and totally lost my appetite again mid afternoon. This has made me feel much better, the pain is at bay and I now feel comfortable and relaxed.

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It seems they are going to try and get me out of here this weekend as a few of the nurses have said “hopefully won’t see you here on Monday!” on their way out. The anti-biotics will have to be tweaked around for that to work so we shall see. That would be brilliant though, I am so ready to leave!

Line Infection No. 4

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My temperature was still all over the place and I felt terrible on Thursday
morning, but in the evening I cooled down, perked up and my appetite came back. Obviously the antibiotics have kicked in which is great!

One of the tests they did on my blood culture has grown the same bug again, so they have confirmed that this illness was caused by my line infection. They are switching around some of my antibiotics now that they know this so when my temperature has stabilised I could possibly get out more!

Hopefully my counts will be up soon so that they can finally take this thing out and put an end to my suffering!