So it’s one day after my second session of chemo and no seizures! Hallelujah!! At the risk of making certain people that know me laugh – I feel quite normal! If that is even such a thing. it’s been a long old week but it should be a routine that i’m getting used to now. Let’s backtrack.
Every chemo week you have a specific routine: Tuesday’s = Blood test day (Can luckily be done at my local hospital)
Wednesday’s = Oncology Clinic (that brings with it a long trek to Doncaster)
Friday’s = Chemo! (Another long drive to Doncaster)
I’ll recap as best as I can since i’m sat in the bar at work typing this right now with an ABBA show playing in the background and it’s apparently quite hard to type a blog and also try not to sing along! So I go to my blood test on tuesday with my best friend. I’m seen incredibly quickly, result! Go in to the little cubicle, have the funky strap tied round my arm and she gets to work. I remember being quite randomly disappointed with the pattern of the piece of material! Normally its leopard print, however i’m stuck with floral this time. Blood test is quite non eventful so I get up to leave, put my jacket on and go back out to meet my friend. Chatting away, we’re getting in the car and I go to take my jacket off since the sun has suddenly come out. That’s when I look down and just see blood all over my arm. What on earth has happened?! Has someone sliced my arm off without me looking? I’m trying to be discreet but my friend notices – we come to the conclusion that maybe one of the tablets that I had been taking had some kind of blood thinning effect, whatever it is I made a mental note to tell my consultant the following day. Anyway we had more important priorities to get to – we were off for fish and chips! Me, my best friend and her two children went off for some food and then she took me to meet her mum who had been on a similar journey to me. A lovely afternoon with someone who understood certain feelings and experiences since she had been there herself.
Wednesday, off to Doncaster for my oncology appointment. Not expecting any issues here, just a general check up to make sure i’m not struggling too much with symptoms etc. Again get taken through to the appointment room quite quickly! Maybe my luck is turning? Although we’re walking through the corridor and I had forgotten a vital part of the day, I had to get weighed! Maybe not then! Although, I did enjoy the nurses confusion when she turned to me and asked if the weight that was showing sounded about right! Yes, although I never weigh myself that sounds about right (if my love of McDonalds is anything to go by!) Going by how about a minute before she had called me “nice and slim,” the shock on her face made up for the blow to my ego!
So we get taken through to the appointment room where we have a painless wait of about ten minutes before the consultant comes in. The first words out of her mouth were “well haven’t you caused me some sleepless nights?!” Well I mean, I know i’m dramatic but sleepless nights? My love of drama has obviously reached new heights! The whole appointment however was positive! She was thoroughly explanatory, about everything. She explained to me that this cavernoma in my brain had probably been there since birth and it was just an unfortunate coincidence that I suffered the symptoms when I did. Same for the thing on my liver! It will have been there forever! I’d just never known about it. The interesting thing about that is that so many people will be in a similar situation and may never know about it! We could all potentially have these weird masses somewhere in our bodies but unless they decide to play up we will remain clueless! I digress, the general conclusion seems to be that she is completely happy for me to proceed with chemo as that needs to take priority. Long story short my brain can wait, the lump can not!
I’m back, picking up typing this weeks blog a few days later! I think the temptation of singing along to ABBA just got too much for me – back to the story!
It’s now friday. Potential doomsday! Dramatic? Maybe, but looking at the faces of my family that I was with there was a definite sense of tension in the air.. That’s the polite way of saying that people were freaking out and snapping at each other every 3 seconds (okay well maybe that was just me..)
Thinking about it now i’m not actually sure if I was nervous about it? If anything I think we were putting brave faces on – why be nervous about something that you can’t change? That’s what I was telling myself. I had to have the chemo, regardless of what happened afterwards so it’s time to be a big girl and just get on with it. So we’re in the car and every chemo day I have strict instructions to take 6 steroids and then a single different tablet (which I still don’t even know what it does, is that bad?!) but disaster strikes! Out of 6 steroids, I only have 1! Oh I really don’t need this today! Mum starts stressing but by this point i’ve already taken the mystery single tablet. The clock is ticking away and we don’t know what to do. How crucial is the 1 hour countdown? Have I ruined the whole day by already taking the one tablet? Do I take the one lonely steroid or do I wait? So many questions and so little time before i’m late taking the medication. We settle on a phone call to the hospital who genuinely calm all our fears in about 60 seconds! Just come to the hospital and we will fix everything – don’t stress!
The only downside to this is that it means my appointment is now set back an hour later than it should have been because of the steroid mishap. Obviously the hour countdown is quite important as that still had to be stuck to! It’s all good though, me and nan have comfy seats, there’s a TV and another friendly nurse. I’m all set! The appointment runs smoothly, we’re there chatting away with the nurse after a minor mishap trying to get the cannula in (apparently I have small veins – who knew?!) and everything is going pretty well! Turns out I don’t even have to have the extra infusion that I thought I was meant to have to stop the cancer coming back in my bones. That’s something to look forward to next time! The hour or so of the actual appointment runs pretty quickly, nan went to get snacks so all in all that led to a happy Jodie. Finally all finished, i’ve had all the drugs that I need and it’s time to go and try on some wigs! No word of a lie I had been looking forward to this all week! In particular there was a blue one that I was really excited about!
We head off in to a little side room and Bridget (the lady who ordered the wigs for me) starts taking them out of their bags to show me. I’m looking and I don’t know where to start! I ordered 5 and i’m allowed to take 2 away with me today so let’s get going! Out of the 5, I liked 3 of them. The other 2 just weren’t really cutting it for me – rejected! Out of the 3 I have left, one is the blue one that I had my heart set on and the other 2 are actually the same wig but in different colours. I try those on and I like them, but I can’t stop peeking at the blue one. So the moment arrives, I put the blue wig on, turn around to look in the mirror… And I don’t like it! Really?! I look like Marge Simpson! Utter disappointment but it’s a good thing that I like the other two – Cinderella, you shall have hair!
Leaving the hospital that afternoon, I can feel the eyes on me. Just every now and then, just checking making sure i’m okay. I’ve had to negotiate a deal with my family that if and when i’m not okay I promise to tell them the second it happens. They don’t have to keep an eye on me 24/7! I know it’s easier said then done after the drama a few weeks ago but i’m not trying to be a hero, people have to trust me that if i’m not okay I won’t keep it to myself. Anyway, we go off and do a little bit of shopping and a McDonald’s is thrown in to sweeten the deal so basically a good afternoon is had by all!

I think that’s the general recap of what i’m now referring to as “chemo week.” I’ve struggled a little this week writing everything down so it may not flow or read as well this time but I think chemo brain is getting to me a bit. That’s my excuse and i’m sticking to it! Anyway some far more exciting things have happened lately – let’s get to them!
I have to go back a few days before I start telling this first story but 4 days after my 25th birthday I get a phone call from a number that I don’t recognise. Turns out I have had a referral from Age UK! I’ve only been 25 for a few days, is this normal?? Once I had got over my shock an appointment was arranged for a lovely lady to come round and visit me to go through and explain anything that I potentially needed help with. She was also able to refer me to a Macmillan advisor so hopefully I will know more about that for the next blog.
I mentioned in my last blog that my hair was already starting to come out, well this week I took the plunge and had it all shaved off! Scary and stressful but needed to be done! I’ll put pictures on my Woman to Warrior Facebook and Instagram for anyone that hasn’t seen them. Turns out after all my worries about weird birthmarks or egg shaped heads, mines quite ordinary. Also, I look strangely okay with a shaved head! Bizarre times indeed but i’m glad I took control over a situation that could have easily carried on being traumatic. I hated watching it come out so it was turned in to a morning with all my family and my best friend having a bit of a laugh and making something fun out of a bad situation. Yes, the fringe was left till last. Couldn’t quite bear to part with that straight away but I definitely could not turn down the opportunity of painting it with rainbow colours before it met the same fate as the rest of my hair. I took a little video beforehand and some pictures as it was being done and these are going to be used at work as the team are doing their very own brave the shave! I feel like my decision to shave my head and the story behind it is now even more positive as it will play a part in their fundraising efforts and hopefully they will be able to raise a good amount for Macmillan! Fingers crossed!
To finish off my blog for this week, I can officially announce that I will be joining the PTEN International Family Council. Over the last few weeks I have connected with a lady over Facebook who runs the PTEN Foundation. She is the one who sent me the badges that some of you have, my shirt I wore when I shaved my head, she has shared my blog and been a massive source of support and strength to anyone dealing with this syndrome. I messaged her and asked even though I am in the UK and she is in America, how can I help? I feel like I need to do something and I don’t want my location in the world to stop me. She then honoured me with the invitation to join the family council and through joining I feel like I have experiences and thoughts that can hopefully help someone and make even just a small difference. The council’s aims are; to raise awareness and educate about PTEN
Advocate for policies and programs that can benefit the health and well being of patients and families
To develop links with researchers who can also benefit health and well being of patients and families
Develop vital links and relationships with PHTS/CS/BRRS communities
Provide input and feedback on the delivery of healthcare services for children and adults with these genetic conditions
Identify and liaise with Clinical Centres which help in the diagnosis and care of patients with PHTS or other related syndromes
Assist in developing policies and programs through collaboration with PHTS/CS/BRRS communities and others
Share current ‘best practise’ guidelines on diagnosis, screening, surveillance and clinical care of patients
Review issues and concerns raised by the council by patients, caregivers and others, and recommend matters for discussion with board members of the PHTS Foundation and/or PTEN Italia
To assist in the planning of events for patient and family communities,

I honestly can’t begin to explain the honour is to be asked to join something of this magnitude. To have a condition that you can’t change or do anything about, it’s wonderful to now be a part of a group of warriors that are fighting to make a difference! Watch this space!