Tag Archives: life

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 still here… I promise!

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Hello! Sorry its been so long since my last post. Exam season was soon upon us and revision completely got in the way of life and blogging. Now however, my exams are done for the year! It’s hard to say how they went. On the day I felt awful about English, but in hindsight I feel better about it. Biology and Psychology I was worried about due to the sheer amount of knowledge: you have to know a lot even though only a small amount actually comes up in the exam. I think they went well though, I don’t think there was anything else I could have written.  Its such a relief for that to be over!

Sadly, a long hot summer does not start here. I’m straight into UCAS and crafting my personal statement, as my tutor has highlighted me for early entry due to Physiotherapy being a competitive course. 2794 characters in and I’m beginning to run out of steam… plus the temptation to use the word ‘passionate’ is getting too strong!

Of the four college students I had a meeting with about UCAS priority entry, I am the only one who can attend the Cambridge University summer school that Chichester college was offered 4 places to. This is an amazing opportunity to experience a university lifestyle; we spend a week in the university halls attending seminars by day and socialising by evening. In the past events such as theatre trips, walks around the grounds, music nights and punting on the river Cam have been held, which all sound brilliant to me!

After I finish my first draft of the personal statement, it’s back to a week of intense driving theory (second time lucky eh?!) and A2 transition work, then by the end of June I will be free! July is looking intense but amazing for me, filled with lots of trips to places and finally culminating in my 18th birthday!

From the health point of view, my bloods have been too high recently, so my dosage of chemotherapy tablets has increased. They still need to suppress my immune system somewhat to ensure that they reach every last little Leukaemia cell. In other news, I think my cough has finally shifted. Good riddance! Remember I said if it’s not one thing then it’s another though? I now have a slightly odd rash near my old central line site which could just be heat rash, but looks as if it may be slowly tracking over my shoulders, so this will need some further testing and observation. It’s not itchy or painful and my temperature has been fine, its just a bit odd looking and is very conspicuous where it is so I would like it to be treated if possible.

During the half term I had a great trip to Rome with Make A Wish which I will be writing more about in a separate post. For now I’ll tell you that it was hot, sunny and such a vibrant city!

Quick Life Update…

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

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

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

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

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

Hope everyone is well!

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

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

A New Normal

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

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

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

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

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

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

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

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

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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!

Post From Nashville?!

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The chemo has definitely started to kick in now and I’m feeling slightly worse for wear, but the sunshine and the fact that I am home is something to be thankful for!
On Sunday the weather was gorgeous so I hosted a bbq for the old gang, we sat out in the sun chatting for hours and it was just really lovely! IMG_20140413_182420

I’ve noticed that through this experience I have learnt to treasure every moment of freedom and time spent with friends and have also grown to appreciate the little things- just being able to sit in the sun and have a laugh with my girls was so special!
Another thing that has really struck me recently is how precious life is. Before August 2013 I took my health for granted and it never even crossed my mind that this could happen to me, but since going through this I am determined to make my life count and not waste my opportunities. I think we need constant reminders to appreciate everything we have been given and to live life in all it’s fullness.
Meeting people with terminal cancers through the ward is always inspiring to me, but I still find the whole thing so indescribably unfair that I can’t wrap my head around it. How can I get off with no complications whilst someone else has been suffering for years without a positive outcome? Why should I be the lucky one? I’ve found that it makes me long for the day when there is a cure for all cancers.
This is one of the reasons that I really connect with the latest Race For Life advert (if you haven’t seen it you can follow this link… https://www.youtube.com/watch?v=ueU_zGjnJLA ) I love the tone of the narration, it says we’ve had enough of you cancer and we’re coming to get you!

In the past used to naively assume that because cancer is still one of the major causes of death in the UK Cancer Research didn’t actually do much, but how wrong I was! I now know a lot more about what they do and just recently made the link between the charity and clinical trials. This was something I was offered in the beginning of my treatment and it made Cancer Research more relevant to me. Through the viral “no make-up selfie” campaign (in which women take a photo of themselves fresh faced, post it online, text a donation to charity and nominate others to do the same) an astonishing £8m was donated to Cancer Research UK. This money can now go on to fund nine more clinical trials which I think is really great.
Since this charity has been put on my heart I have found an event called Shine Night Walk, a walk around London in the evening on September 27th and am thinking of entering this year to raise money for them. It will require training and planning but I will let you know if I get a group together and am looking for sponsors!

Before I go tonight I have one last story to tell! You might remember that back in February I missed a Taylor Swift concert I had planned to go to, the one that one of my nurses then went to and met Taylor Swift’s mum at? Well, as mama Swift took my name and said for me to write to them I sent off my fan mail at the the end of Feb… and waited. Then waited a little bit more. Finally a package arrived for me today, and I stood staring at it for a while thinking “but who do I know that lives in Nashville?!” then the light-bulb moment hit me and I was grinning and tearing at the cardboard! The parcel contained some really cool merchandise from her Red tour including an autographed photo, t-shirt and some mega cool Taylor Swift guitar picks! Anyway here’s a picture to show you my goodies!
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