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 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…
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.
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.
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!
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!
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!
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!
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!
So 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.
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!
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…
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!
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!
Thankfully I managed to get home this morning, the redness and hives from yesterday have gone down but my hands are still slightly puffy which is ultra glamorous (not).
This wasn’t my ideal way to kick start the weekend but I am just glad it’s over and my symptoms didn’t get any worse. In case they did there were all sorts of drugs prescribed on standby, the doctor mentioned adrenalin at one point which made me worry as I didn’t think I was THAT bad, but then she said she didn’t want to give it to me as it would make me feel rubbish, mess around with my pulse and I wasn’t at that stage. I think she saw my discomfort as she was very reassuring, telling me not to stress and that everything was fine as long as I didn’t get any worse.
The nurses on during the day and night were all really lovely which made spending most of the last 24 hours in hospital a lot more enjoyable, it’s always nice when they make the effort to stay and talk to you. It makes you feel more like a person and not just their next patient to be dealt with! One of the nurses I had met on that first night back in August last year and she remembered the details such as what I was given on arrival (fluids and blood transfusions!) so it was really nice to catch up with her almost a year later.
I feel much better today but have to admit I am currently in bed taking it easy as I didn’t get much sleep what with itching in the night and waking up at 5 am for some unknown reason this morning!
Wednesday brought a 9 hour long day at St Richards. I went in for a blood transfusion but ended up staying for chemo and platelets too. Each blood bag takes a painfully slow 3 hours to go through so by the end of the day I was going crazy from boredom and restlessness! After all that my levels didn’t even improve much, despite a big bag of platelets they went up by a grand total of…. 1. Really helpful!
The good news is that I only have three doses of this treatment block left! After that I will be waiting for my counts to improve so that I can have my line taken out and start my maintenance phase which lasts just over a year. I have spent 9 months counting down to this milestone and now that it is approaching I can’t quite believe it.
Now for an update in the nail art department, here are the watermelon nails I painted myself this week (I think I went a little heavy on the black ‘seeds’ though)…
… and as for my latest TV addiction, that would be Hart of Dixie; a show about a New Yorker called Zoe Hart trying to make it as a big-shot surgeon, who ends up living an unexpected life as a GP in a small town in Alabama. Cue red neck accents, founders day parades and endless love triangles… all very charming and American so right up my alley!
I am loving all the sunshine we are getting at the moment, but let me tell you the heat is a real nightmare for wearing a wig! If I walk anywhere with it on I soon begin to feel as if I am wearing a woolly hat, which is anything but pleasant in the hottest parts of the day! I do appreciate that it is a once in a lifetime opportunity (or I hope so anyway!) to see what I look like bald as many people will never have that experience (lucky them), but I’m getting pretty impatient for my hair to start growing back again. I’m hoping for curls.
After last nights post, it turns out that my platelets have actually gone up to 71 today!!!!!
When the nurse told me over the phone I broke out into a grin and even did a little victory dance because that is only four away from what the regime specifications require for chemo. Hopefully the bank holiday weekend will be enough time for the platelets to increase that tiny bit more (AND NOT DROP, PRETTY PLEASE!).
I will start by having a lumbar puncture and drug called Cyclophosphamide next Wednesday, then four days of a drug called Cytarabine pushed through my line at home or on Howard ward. The drugs are not new to me so I have a general idea of what to expect: tiredness and possibly a bit of sickness, fun fun fun!
In the back of my mind it feels wrong to be excited for chemo and the two words don’t even belong in the same sentence but I am really looking forward to getting this month over and done with, as you well know from all my moaning blog posts!
I’ll leave you with my current thoughts/feelings:
Am happily back at home now and I had my last dose of antibiotics today. Hopefully that will hold off another line infection for the last big month of chemo, then it can finally be taken out! The microbiologist wasn’t worried about it affecting me after as she believes the problem is just in the line. Once it’s taken out it will be one less thing to worry about anyhow.
I still have no word on when the chemo will be under way. My platelets were only 45 on my latest FBC (full blood count) when they need to be up to 75 in order to go ahead. I’ve gone through a whole spectrum of emotions about this: from patient to annoyed, calm to angry. Honestly I have now given up thinking about it as much as possible. I have to accept that getting the full treatment is my priority and the chemo will happen when it happens. Plus I learnt early on that not much runs smoothly or swiftly in hospital! I’m taking it as a test of my patience, which is something I really need to work on! Even though it is unfortunate that it cuts into summer more now there is nothing I can do about it. That’s the way the cookie crumbles!
Now, do I have any Zumba fans out there?
(If you don’t know what this is, it’s like crazy dancing for fitness and it is great fun!)
If you like Zumba and would be up for raising money for the Sussex Snowdrop Trust there is a charity zumbathon on Sunday 1st June from 10am to 12 noon. The venue is Oving Jublee Hall, High Street, Oving, PO20 2DQ and tickets cost £12.50 on the door.
The Snowdrop nurses have been a huge help in my journey. Whether it is taking bloods, just chatting or providing vouchers for petrol (the constant drives to Southampton were eating up an insane amount!) the nurses have been professional, supportive and above all caring and kind. The charity deserves every penny that will be raised through the Zumbathon, so get your kit on and join in if you can! They have asked if people could wear the colours of the charity, green and white, but have said it’s not a problem if you’d rather not. I’m really hoping I’ll be able to go but it will be dependent on blood results and chemo.
That’s all from me!
It turns out that both of my lines have grown a bug in them, which is just great!!! (NOT.)
I am feeling well and everything is stable so I could technically come off of the antibiotics, but due to the fact that this is the 3rd incidence of a line infection the doctor reckons that doing the full 7 day course would probably be best in order to kill as much of the bug as possible.
They didn’t manage to get in contact with my main registrar at Southampton as he was off today, but tomorrow they will call him to make sure a plan is in place before the weekend.
For the moment I am still locked away on the children’s ward, and despite a few kids screaming and crying as if they were being tortured earlier which was quite moving I don’t actually mind being here as I am close to home. There is always a positive!
It did make me laugh when I first got here and the nurse came in to weigh me as she said she wished all patients were as easy to treat as me. I was confused as I wondered why any young child would resist what is probably the easiest part of all this, being weighed; it’s quick and pain free! She told me that they often have to bribe children onto the chair with stickers. Rewards for sitting on a chair for ten seconds?! The idea seems ludicrous to me, but then I got thinking… maybe I should be playing the cancer card a bit more, reaping some more rewards? Haha!
My platelets were exactly the same today as they were last week so that means no chemo for this week. On the plus side my neutrophils are up a bit at 1.4 so I have a bit more of an immune system. They are still beneath a normal person’s results but that’s expected at this point with the drugs I’ve been on and I’ll take what I can get! My hb is 105, it’s hovering round 100 which is a good level for me.
On Monday my aunty and I drove up to the trundle hill for a picnic because there is a lovely viewpoint up there, but within minutes of arriving the rain came and the whole of West Sussex was engulfed in cloud… which kind of ruined the view a bit, as you can see!
Life is getting pretty dull sitting around waiting for the chemo, the only exciting thing I did today was catch up with a friend. After that I didn’t really feel like doing any of the tasks I’d set myself so I watched Breaking Bad and read a book all afternoon. In the beginning it took us quite a while to get used to the fact that you can have down days where you either feel rubbish or are just lazy, in fact you need to! When I came off the first course of steroids (on which I was buzzing and doing lots) I crashed and after reading MacMillan booklets such as “How are you feeling? : The emotional effects of cancer” (honestly not something I thought I’d ever need!) I embraced the rest days as they are good for my body while its cells are killed!
The next step is bloods again on Thursday and who knows what those results will be!
I feel like I haven’t posted in a while so I thought I’d do an update.
One of my friends writes in her biography on Instagram “Hi, I’m _____, I’m 17 and I’m currently doing nothing full time.” This really made me laugh when I saw it and couldn’t be a more accurate way to describe my life right now!
Someone recently asked me that question “how are you filling your time?” again and I still struggled to find anything interesting to tell them!
I have a new best friend called “Netflix” and together we are catching up on popular show Breaking Bad which I’m sure many of you watch or know of! I’ve also started studying bits and pieces for when I (hopefully?!) start college in September again, the college kindly gave me a login so I can use all the resources that the teachers post which is really useful.
I am neutropenic again which means that I have to stay away from big groups of people to avoid getting ill. That is one of the most frustrating parts now because EIGHT MONTHS of not being able to go out like a normal teenager is a LONG time!
I’ve had a couple of aches and pains recurring recently which is probably the worst part of the whole thing, but one was my own fault as I overworked myself doing exercise so I ended up hobbling around like a granny with stabbing pains in my kneecaps for a couple of days!
My hair is coming out fairly rapidly again, I almost clogged the drain in the shower the other day which was equally humorous and horrific! This time due to its length I can pull out clumps which I found quite scary and upsetting at first. It’s annoying but I am holding out hope for it as I did manage to keep my hair before when my first doctor told me it would be gone in two weeks!
My next chemo is on Monday at Southampton, I am set to have a lumbar puncture and a drug called Cyclophosphamide but my platelets are a bit on the low side at the moment so they might not have recovered in time for the procedure. No complaints here! The Snowdrop community nurses are coming to do pre-chemo bloods tomorrow at home and those results will give the doctors an idea of what’s happening, after that they might decide to give me a transfusion at St Richards or wait until Monday morning, I will let you know.
The photo for this post is of the set up for when the nurses come as I thought you might be interested to see what bloods at home looks like ** warning- photo contains needles but no blood just in case anyone is squeamish!**
I usually get all the stuff ready before the girls come because it saves them time and means that the giant cardboard box of medical equipment doesn’t have to hang around downstairs (instead it clutters the floor of my bedroom!) The girls do all the drawing up and everything but me having everything ready to go saves them a job. I’ve been incredibly lucky to have to this team as in the long run it will save over at least 100 hospital trips! They are all really sweet people who know me really well, one woman comes in and can tell straight off from my colour how I am feeling and if my hb is a little low when even me looking in the mirror didn’t clock any
In other news, we were amazed at the support for the “tour de solent” cycle ride! Running total is an epic £1,185! Thank you so much to anyone who has donated so far to support Teenage Cancer Trust, you guys are incredible! All the messages on the Just Giving page were great too, thank you again for being so awesome! If you haven’t already donated then please consider giving even the smallest amount, the giving can be kept anonymous too so you don’t have to say who you are or how much you give. Here’s the link again….
The ride ends on May 25th and we might get a group to meet them and go for a drink at Gunwharf when the cyclists return but I will update with details for that.
I’m currently feeling really well but if all the chemo goes ahead next week it can be quite intense and I might be suffering, having two chemo drugs in one week can be a recipe for sickness! I can’t really tell as it’s really unpredictable!
I think that’s all for now folks, I have been inspired by another Acute Lymphoblastic Leukaemia blog called “The Kathy Diaries” (check it out here if you like http://thekathydiaries.com/ ) to post more often so next week I will try and do at least two updates. You guys can send emails through the Ask Me section hassling me if I am being rubbish, it will motivate me!