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.
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 a last minute change of plan which meant that I had to pack a bag for a 1 night stay up at Southampton, my chemo finally started on Wednesday. The day turned into a bit of a nightmare (it was a lumbar puncture day and you know I never have any luck with them!) but I was able to leave Southampton this afternoon as planned. Here’s the story of Wednesday…
11:30 am: The first thing that went wrong was that my bloods were taken too close to the time of my lumbar puncture. Without knowing my platelets they couldn’t go ahead due to the possible risks, so our first setback was that we would have to wait for the results to come back from the lab.
2:30 pm: THREE HOURS LATER, in which time we had been stuck waiting in the cramped intrathecal room on a busy and disorganised ward, the results finally showed my platelets to be at an acceptable level. Brilliant! So we can get started now right?
2.40 pm: Cue the next disaster: pharmacy were going to take another half an hour to make up my chemo, which to this very moment makes no sense to me since the intrathecal was booked for 11.30am! WHY WASN’T THE CHEMO MIXED FOR THAT TIME?!
3:15 pm: We get wind of a universal gas and air shortage. Only one of the five cancer care wards had a canister, but they needed it for patients who were having bone marrow biopsies. When the nurse asked me if I didn’t mind going without (casually, as if this was no big deal) I tentatively nodded my head and in what I’m sure was a hushed voice several octaves higher than my normal tone, replied “mmmm…. thats….. o..kay”. Ever since that first lumbar puncture which went oh so wrong I have always had the gas and air to take the edge off, so I couldn’t imagine the procedure without it. I was anticipating severe pain which of course didn’t happen, but you do notice a few more unpleasant twinges and sharp pains without it.
One of the main lessons you learn through this and any experience of hospital I’m sure is “take whatever pain relief they offer you”!
3:50 pm: The lumbar puncture is finally done, and so begins the hour of lying flat on your back afterwards to prevent headaches and sickness. Like I said it wasn’t as bad as I had expected but I did spend most of the time trying not to cry, not from pain but because of the way that everything had built up, also from being aware of everything during the procedure and the fear from right before that I had kept in! I knew it was irrational so I was lying there giving myself a silent pep talk and willing myself not to blubber like a baby!
Was that it? Could I relax now? No, of course not! The moment I could stand up again I was straight off to have my monthly nebuliser, that ghastly drug that I have to sit in a ventilated room and breathe in. I think by that point in the day I was so indifferent to everything that I couldn’t be bothered to get worked up by it. I put my headphones in and powered through the vile taste so even that wasn’t too bad in the end!
The day ended very well with the girls having a good old natter: Asheton, Kitty and I plus our mums all sharing news and having a moan about a few things! I also got to catch up with another friend who we hadn’t seen for a few months which was also good, she amazed me with her strength and bravery as she was facing a major operation today.
I had one dose of IV chemo today, my last ever shot of a drug called Cyclophosphamide so I have been feeling slightly groggy since then, but am glad to be home!
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:
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!
Having felt a bit rubbish the last few days my mood did pick up considerably earlier and I was back to my more chatty self for a while!
I had my two doses of chemo in the morning, one of which I thought I’d put up a photo of as it is quite an unusual bright red colour…
It turned into a really pleasant day so when my cousins arrived at the hospital we escaped for lunch on Southampton Common. I really enjoyed getting a trip out into the fresh air but have been shattered ever since as the chemo has definitely kicked in!
My next dose is on Saturday so I am just waiting around now to see if I can grab some more time at home when that is done.
Before I go I just wanted to say a quick thank you to the people that sent me an email through the blog after my last post, it was a real encouragement to hear from you and all of the support is really appreciated!
I hope you have had a good weekend! I definitely have- I’ve seen some great people and been given EVEN MORE lovely presents! At this rate I will have nothing to ask for at Christmas because people have been so generous!
Speaking of gifts, earlier this week Ed presented me with these (which he no longer needs as he is not on a neutropenic diet) …
He got them as his mum works for a school and they order them for the canteen there anyway, I think us “neutros” are not supposed to use ketchup bottles because it lets bacteria get in and possibly bacteria grow on it when the top gets all manky!
Like Ed, I have become one of those patients whose levels are consistently low- so much so that it interrupts treatment such as LPs. After dropping to 11 I had a transfusion which took the level up to 30, however I then dipped back down to 13. These are not at all good levels for the LP (they want my platelets at 80) so I am having two bags of platelets today and one is on reserve in case they drop again in the next 24 hours.
My next LP is scheduled for 11.30am tomorrow. I will let you know whether everything goes to plan or not!
Earlier I had a lovely chat with Yvonne, the specialist nurse for the TYA unit and C6 the adult unit (and accidentally ended up spilling my life to the poor woman!) First she got me very scared- asking about Daniel having a blood test to see if he is a match for me if I ever need a bone marrow transplant (BTW DAD/DAN IF YOU SEE THIS DON’T FREAK OUT, ITS NOT LIKELY TO HAPPEN AND I WOULDN’T FORCE YOU IF IT DID COME ABOUT!) and then she got me very excited by saying that her and another nurse are going to ring chichester paediatrics to see what parts of my next block “Escalating Capizzi” can be done at St Richards, so that I could be LIVING AT HOME! Somehow I think the doctors are going to be reluctant to allow it but that would be reaaallly good if they did! I do find the idea daunting though- I’m so used to being here and I can’t imagine what it will be like being home again for an extended period of time but on chemo too. It’ll be another big life change to adjust to, but I’m sure it will work out fine!