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:
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!
I come bearing good news!
I thought that since I don’t have any chemo for the next two weeks I’d be able to get a bit of leave to be at home rather than sitting around in hospital for ages, however the doctors have kindly gone a step further and unexpectedly arranged the REST of my treatment block through St Richards and the community nurses who come to the house!
This means I will be living at home with my bloods done twice a week and I only have to go into Southampton around 4 or 5 times in the next 2 months for the bits that St Richard’s can’t do. This is a much better deal than being stuck in the unit the whole time!
I am still neutropenic and will probably be up until June so I have to be careful about what food I eat and avoid people who are ill or have illness going round their family but I’m so glad that I get to be home that I’m not bothered! Now I just have to be super careful because I don’t want to end up in hospital when I don’t have to be because of an infection!
We had to pack up the room and there was so many bags and boxes that I have to confess I haven’t unpacked it all yet… so much stuff but so little space to store it!
So last night was possibly my last night on the unit ever! (I’m still a smidge sceptical as the doctors did say that before and then I ended up in hospital again but I will enjoy whatever time I can get at home and hope that it will all work out!)
Hello again 🙂
I have two pieces of interesting/good news today!
First of all on the 17th the ward is being officially opened by two celebrities and the mayor of Southampton is popping in that afternoon! (I happen to know who the celebrities are but am sworn to silence as the press are not allowed to know until the day before!) But more importantly for me, on that day some people from BBC and ITV are going to do an interview with me and Ed where we are basically bigging up the ward (which I have no problem with) and answering questions on our time in hospital. I will ask when it will be shown on TV and let you know if they can give me an answer! I am slightly worried about being filmed and messing it all up but Kate (my social worker) says as it’s not live they can cut and film bits again if it goes wrong! How about that eh, me on TV!
Second of all the consultant has said I can have more home leave this weekend- YAY!! We are going to go somewhere hopefully in the open air (avoiding people) and pick a Christmas tree and then take it home to decorate, which is bound to end in arguing and bad moods but hey ho, wouldn’t be normal without that! I have adjusted to being in here all the time now, but the thought of going home does feel good!
Homebase have donated a Christmas tree to the ward so tomorrow the social workers have arranged for us all to come out of our rooms to assemble and decorate it with Christmas tunes blaring from the jukebox which will be good!
Well I am getting withdrawal symptoms from this lovely book I am reading so I had better go,
will post a pic of the finished Christmas tree tomorrow!
So I am back in hospital, about to start the next chemo after a day of lying around waiting for nothing. First we had to wait for someone to take blood as when I showed up they seemed to have no idea I was coming, then we had to wait for those results to see if I was strong enough for the lumbar puncture. Mum and I sat and chatted to Ed for a couple of hours until we found out I was being readmitted. They put me in Ed’s old room as a new admission has been put in room 3 which was funny as Ed was hoping to get this room back whenever he is admitted again!
Then I felt reaaallly tired so I just had a nap while I waited for the lumbar puncture slot at 1.30. An added complication which showed up on the manual blood test is that my blood has been thinned by one of the chemo drugs so guess what? That means no lumbar puncture! It felt like we’d wasted a whole day sitting around, but now we are pressing on with the next round of chemo despite not being able to do the lp yet. They’ve booked to do it on Friday and are pumping me with vitamin K in the meanwhile to see if they can sort my blood out.
The results of the MRD showed me to be high risk, so I’m switching to regime C. That means a longer treatment and it’s slightly annoying but if it means less chance of relapse and zapping every single bad cell then it will be worth it.
Here are this week’s nails…
This evening I am going to lie and read and do nothing. Bye for now!
Today has been gooood!
Any Taylor Swift fans will recognise the title of this post as a song from her most recently released album ‘Red’ and the reason I chose it relates to my latest news and The Swift herself.
This morning after a tense wait and frantic refreshing of internet pages I got one step closer to achieving one of my dreams:
GET TICKETS TO SEE TAYLOR SWIFT IN CONCERT!
We bagged two tickets to one of her London shows so I am considering myself the lucky one today- hence the blog being so titled.
If you know me well enough you know that I am a BIIIIG Swiftie. Her curly blonde locks are my ultimate dream hair and she is who I say my role model is when asked. I admire how she doesn’t go out and party hard- her idea of a fun night would be a night in a woolly jumper decorating cupcakes with her cat Meredith. She’s never plastered over the tabloids for behaving badly, unlike other celebrity disasters we could mention (cough MILEY CYRUS cough). I love the country/ Nashville links and that she stays true to her roots despite branching out across the world. She is a Christian! Her songs are SO RELATABLE. I could go on forever. You can see why I am SOOOOOOOO HAPPY that I got these tickets!
This made my day, my mum is the best ever 😛
The concert is next February so I am fairly sure I will be in ‘maintenance’ phase which is mostly out patient treatment- and though a crowded arena full of bacteria ridden people may not be the safest place for me I WILL GO IF IT KILLS ME! I will even sacrifice my dignity and wear a surgical mask if the doctors ask.
Bye bye from a very happy Becca!
Later tonight I am having my locks chopped into a messy bob and a friend is donating her ponytail to the Little Princess charity who provide wigs for children- watch this space for some pretty cool before/after/during shots!