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!
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!