Despite rain, steep hills and a couple of punctures along the way the team were all in high spirits (they probably didn’t feel like it but I think what we saw was the relief that their miles of cycling was over and the thoughts of a long hot bath shining through!)
We sat outside in the sun hearing stories from the trip, including when ‘someone’ (there was much shifting of blame over who this someone was!) left the money bucket on the ferry, when Ray decided to cycle to the pub as there wouldn’t be space for five in the taxi, then when the taxi turned up they discovered it actually would have taken six people… meaning that two of the cyclists were doing extra work for nothing and how the tent poles came apart in dads tent so that by the morning the rain was soaking through to the inside of the “2 man” tent!
They all did brilliantly, managing 50 miles on the first day and completing the final 20 the second day. The total on the just giving page is now £2020 which is absolutely awesome! I don’t know whether this includes the cash from the Teenage Cancer Trust bucket but thank you so much to everyone who donated in whatever way, you have stunned us with your generosity!
Today’s blood test revealed that my platelets are too low for chemo which is
My results were HB 112 Platelets 51 Neutrophils 0.7.
They have rescheduled to check my bloods again early next week and all being well my chemo should go ahead Wednesday. I really don’t want there to be a big delay so here’s hoping my platelets recover ASAP!
This evening some of the cyclists for the upcoming “Tour de Solent” I have mentioned met to discuss the plan and here is a couple of photos we took for the Just Giving page…
Also I noticed on the way back how wonderfully patchy my hair is getting, see either side of that weird shaped bit of hair left at the front…
And just for some more embarrassment (a nurse once said to me
“with cancer you leave your dignity at the door and pick it up on the way out”
and man he was spot on!) here is a video Ed, Harley, Josh and I helped to make which gives a tour of the ward at Southampton, I’m sure many are curious to know what it looks like! Apologies in advance for how inarticulate I am and how silly my voice sounds. OH and also how bad I am at dancing.
Yes, I said dancing!
But it’s a cute video and it was really fun to film, as you can see a lot of the shots were taken while we were just messing around so it was a laugh!
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!)
Had 2 chemo doses again today and I am feeling ok so far except for a bit of back pain from one of the drugs. My next treatment isn’t for about 2 weeks so if all is well the consultant has agreed to discharge me on Saturday. There’s no point in me sitting around here doing nothing when the bed could be used for other people so I should be getting some more freedom which is great! I’ll just have to be super careful at home because it’s very likely that my immune system will be flat again pretty soon. Luckily Howard Ward at St Richards have agreed to give me a bed if I get a temperature and need anti-biotics like before so even if I get ill there is a plan in place.
So anyway, I will let you know whether I manage to get out or not!
Goodbye for now!
Hi! Today has been really awesome!
Before everyone arrived I felt pretty nervous and unsure about what I was doing. My friends Ed and Olivia showed up and we sat around chatting for a while so I felt better! We then went to meet everyone and it all got crazy! It was so busy, it was weird to see so many people!
First we met some patients who have either been treated on the ward or helped to design it and they were all really lovely. Then the press arrived! Ed and I were dragged out to meet lots of people and taken to do interviews. We started off with radios, and my first one was Jack fm, then Sarah ‘Fergie’ Ferguson (Duchess of York) arrived so I got to chat to her and have a photo. I was standing there thinking “I have my arm around a Duchess right now and people are taking photos of us like paparazzi!” it felt so surreal! She was so lovely and much more down to earth than I had expected!
Next I did more interviews with Breeze and then Wave 105 I think! It’s all a blur! The patients, nurses and the Duchess all got in to pose for a photo for the local newspaper the Southern Daily Echo.
After that I got to do some TV interviews! It was so weird seeing the big camera and microphones. Ed thought he had bagged the BBC and I was relegated to itv, but it turns out I GOT BOTH! He wasn’t happy with me!
When the TV filming was done I noticed Ed next door in Vicky’s room and the Duchess just coming out. She said some lovely things to me, including “text me if you need anything” and when I went to see Vicky it turned out that Fergie had given Vicky her number and taken her number and address in return! Sarah had asked if there was anything on her bucket list she wanted to do or anything she wanted. She is so kind! Apparently she has left presents for us!
We all filmed a video to send to TCT patron Roger Daltrey from The Who as he was meant to be here today but he was ill which was a shame- some had come especially to see him!
We took some silly photos of Ed and I in my wigs but mum took her camera home so I will post them as soon as I can!
All has calmed down now, I just briefly met the mayor of Southampton and his wife who were lovely and I am in need of a bit of a rest now!
Finally, just to let you know that at some point clips of the ward and my interview will be on ITV meridian at 6pm and BBC south today at 6.30pm tonight! Also let me know if any of you listen to Wave, Bliss or Jack fm and hear my part! They will only be short but I felt very important filming them and almost famous as everyone was calling my name, introducing me to people and the journalists kept coming up and saying “Becca, can i just grab you for a chat!” At one point I was wanted by the two TV people and one had to just wait their turn until I was done!