I’m now officially a whole year older, but wow in the last month and a half a lot has happened..
On the 17th of July, 2019, my life completely changed. That sounds really dramatic, even typing that out inwardly makes me scoff but its the truth. Nobody expects to be diagnosed with cancer, especially at aged 24, but here is where my life has now taken me.
My initial plan was to document everything going forward, a blog each week for my own sanity if nothing else but that also went a little haywire. This is the first time I feel like I actually have something to type.
So much has happened since my initial diagnosis so if anything for this first ‘blog’ post (I use quote marks as who knows if I even have anything insightful to say each week to call this a blog) I feel like I should just start from the beginning, but even that goes back way further than the 17th of July.
I’ve been diagnosed for a few years now with a mutation in the PTEN gene. A rare genetic disorder that leaves you at a higher lifetime risk of many different cancers. This is a rare genetic disorder that is definitely under diagnosed with not a lot of information surrounding it. There are many different conditions that relate to this particular mutation, the more commonly referred to one being Cowdens Syndrome, but the umbrella of conditions are usually referred to in short as PHTS. That’s what mine is usually called however if I was to start asking questions and getting technical it really wouldn’t surprise me if mine was Cowdens – even though they are primarily the same condition, some conditions under the umbrella maybe show more in children, men, different varying symptoms etc etc
Being diagnosed with something like that already does a bit of a number on your brain. I had gone to see a geneticist about a completely different problem! Joint problems of all things and then all of a sudden boom! “By the way Miss Harris, we don’t know what’s wrong with your old lady joints but here’s something way more interesting that’s wrong with you!” P.S I still don’t really have an answer about what the issue is with my joints but I digress..
I remember getting home after speaking to the geneticist about PTEN. Just sitting in my room and thinking, well what does that mean? In all honesty, the amount of times I ask myself that question in my day to to day life isn’t getting any smaller. To have a condition that is so complex beyond a lot of my understanding is hard enough. To then have the added struggle of GP’s that can’t stay off Google when you’re asking questions is an experience in itself. As I said before, PTEN is a mystery. I can only hope that in the future there will be more information and resources, and I am reading all sorts of things about new research and testing so I know it’s happening! I understand none of it but its happening!
So now to 2018. By this point I’ve been diagnosed with PTEN for a while which means I’ve already started my increased screenings (because of my age, a thyroid ultrasound was the first one that got brought forward) Every new screening brought the potential of finding something scary and that is a whole other story completely separate to this! The first time they saw “something” on my thyroid that they felt the need to biopsy I have honestly never felt fear like it! My world crumbled around me and nothing had even happened! I remember talking the big talk in the car with my nan as we were driving to my thyroid scan that one day I would go to a screening and I would get news that I didn’t want to hear and I had to accept that as a possibility every single time! Very easy to say until it happens, long story short my thyroid behaved itself and there was no cancer to be had that time.
So in my head I’m thinking, “an ultrasound on my thyroid every six months, that’s it? Easy! More screenings will come later, yeah that’s fine! I don’t have to think about that right now, not until I have to! PTEN, what a breeze!” Until I found my first breast lump. Suddenly all the things I thought I didn’t have to think about for at least a few years rear their heads and there’s a whole new host of worries. Now don’t get me wrong, finding that first lump there were other things that I had to take in to consideration although I challenge anyone to not suddenly diagnose yourself with cancer if you find something like that. First of all, my age obviously meant there could be hormonal changes that may have caused the lump. The definition of having PHTS means your body is more likely to develop ‘harmatomas’ which are effectively benign lumps so that was always a possibility. It still doesn’t stop it being scary.
Now I really like to pick my moments, when I found this lump I was literally about to move across the country to start my new job. Which then meant I changed doctors, hospitals, every doctor I had come across so far was now going to be somebody different! Also, because i’d been to the doctors at home when I found the lump initially, I then had to wait until I had my new doctors, I had to get another referall and then wait to be seen at the breast clinic at my new hospital. This led to a very scared Jodie for about two weeks before I could be seen (for any cancer referall, you are always seen within two weeks as a rule.) Luckily, everything was completely fine! Whereas I had felt one single lump, I actually had loads! Flipping PTEN! It was called a fibroadenoma which is normal in women my age, however maybe not as many as I had. At that point, I didn’t care! I could have had hundreds for all I knew, all that mattered was that it wasn’t cancer!
Going through an experience like that changes your viewpoint on lots of things. I’d started considering preventative surgery – not wanting to go through another experience like I had just had if I could help it! Many conversations would be had over the next year between me, my mum and my nan. I shared my concerns and we spoke at depth about it over many different times. The way I was looking at it was risk over benefit. I literally have no need of them and they just scared the life out of me so why not chop them off? Between the three of us, we came to the conclusion that I had time for that later on. I mean, I was told at the breast clinic I wouldn’t be seen until my early screening age, unless I had worries of course, so why should I give myself something to worry about!? Nope, thats another thing to put in the “I’ll think about that later” drawer. Mum and nan agreed with me, however I know if I had said to them I want the surgery now, they would follow my lead.
So now its 2019 and there’s a new lump. It’s been there a couple of weeks or so, I’ve not really thought too much about it other than I know it feels different to the others I know that I have. When I really think about it, i’m not actually sure when the first time was that I noticed this new lump. I’m not sure if I should even think about that too much as I don’t want to beat myself up over how long I may or may not have left it but it’s been there a while. Now when I say this one feels different, if you imagine the fibroadenomas I already have feel like single frozen peas, this new lump feels like that frozen lump that’s all stuck together at the bottom of the bag. A whole bunch of peas stuck together in a bit of a crazy shape to say the least.
Here’s where I probably made my first mistake. I got on google, good old Doctor Google and searched the difference between a fibroadenoma and a breast cancer lump. A word of advice if you’re even still reading this far, don’t do that! I had almost started to convince myself as I was waiting for my appointment to get it checked that it was okay, purely from what i’d read on google. Just stay away from that particular doctor!
After going to my GP about it, I was referred to the breast clinic. I felt quite comfortable about this, i’d done this before. I knew the routine and I felt pretty sure I knew what to expect (an ultrasound and probably a biopsy because of my best friend PTEN)
So I go along to the breast clinic and it’s all going the way i’d expected it to so far. Yes, i’m right about the ultrasound so time to strip off and see the lovely doctor that is going to smear me with gel and have a look to see what’s going on (what an image!) I’m laying on the table during the ultrasound and I have a look at the screen just as he is highlighting this new lump and it’s huge! Like, i’m no doctor but should it really be that big?! My brain then starts ticking and all of a sudden I can’t take my eyes off the screen. I know nothing about what he’s doing but i’m watching everything – like CANCER is going to flash up on the screen or something?
The ultrasound continues and we’re having as much of a normal conversation as you can manage in this situation and he’s explaining to me that yes he would probably like to do a biopsy on this lump. For some reason that didn’t really concern me? I mean I would have much rather had him say no there is no need to do anything, that lump is just a blah blah blah but i’d been in this room before (same room as last years biopsy funnily enough) and I was half expecting the biopsy because of my genetic history if nothing else!
Then he asks me to move, he now wants to run the ultrasound under my arm. That means something different doesn’t it? Why are you looking under my arm? I haven’t said anything about under my arm? That is when he proceeds to tell me that there is also “something” there too which he will biopsy along with the breast lump. This is where I crumbled. I’d been doing okay up till that point! I’d been, in my head, quite chill about the whole thing! Now things were changing and I didn’t really know what was going on! All I knew was that there was now another one.
So I had my anaesthetic under my arm and in my breast and I had two core biopsies. This is where the doctor makes a little incision and they inject this quite cool needle to be fair that makes a loud click when it takes whatever cells its needs from the masses. I’ve had this kind of biopsy before, back in 2018 but still the noise made me jump! I would have thought that I would have been used to it by now! Then that was it for that appointment! You have to hang on for a bit just to see another doctor before you go and I guess to make sure you’re not doolally from the anaesthetic but yeah, I was free to go with a date to return for my results in a weeks time.
The following week was such a long week but I tried my best to put it out of my head and not think about it. Whatever the outcome, I couldn’t change it now so I didn’t want to spend the whole week stressing more about it.
So now it’s the 17th of July and i’m back at the clinic with mum and nan in tow for my results. In hindsight, thank god they were there – I can’t even imagine being on my own that day. We get called in from the waiting room and told that i’m going to see the doctor and there is also going to be a nurse in there with them. Now I didn’t pick up on this clue but nan did. When I got my results the year before and everything was fine it was just a doctor that I saw. This time I had the full shebang! I remember walking in to the room and sitting down and the doctor talking to me about what i’d had done the week before and then saying the words, “I’m very sorry but” and then I don’t remember how she worded the rest of it. As i’m sat here typing I just paused to see if I could remember but I think my brain has blocked out a lot. Even if I can’t remember what she said, it’s been long enough now and i’ve thought it over again and again and now it’s the beginning of a new journey for my life. Stage 2, Grade 3 Breast Cancer. Translated as caught early but fast growing. Again, the joys of PTEN! The PTEN gene is the cancer suppressor gene so the gene that’s supposed to fight off the growth of masses like this – the one that could really come in handy right now basically is broken.
A lot has happened between my diagnosis day and now. Due to my age and the effects of chemotherapy on fertility, i’ve gone through with a round of fertility treatment and had an egg collection. Basically if in the future i’m left struggling to have a baby i’ve now got it covered! Turns out that i’ve got gold star ovaries too as they managed to collect 22 eggs and 17 were mature enough to freeze! That’s pretty good going if I do say so myself.
I’ve also had a session of chemo already, and then proceeded to have a little holiday to hospital that night after scaring my mum half to death with two seizures – sorry mum! Turns out i’m not happy with just breast cancer, I also have something called a cavernoma in my brain which is a collection of blood vessels which had a little bleed after chemo and caused the fits and a cyst on my liver too! However after staying in hospital over the weekend and having doctors telling me that they were investigating to see whether what they had spotted in my brain and liver was actually that the cancer had spread and finding out that both masses were benign – things seem pretty okay to me right now!
So I think i’ve caught up with everything that’s happened now. Next week is chemo week again, wow that rolled around quick! That means I will need a blood test on the tuesday so they know all my levels are still okay. I’ll go to my oncology clinic on wednesday so they know how i’m getting on with the symptoms of chemo etc and then the next chemo session will be the 6th of september. I’m learning that its okay to not be okay, i’m very used to doing everything for myself and after staying in hospital directly following chemo I thought I was one of the lucky ones that didn’t get any symptoms at all! Turns out they just started happening a bit later than expected. I haven’t felt sick or anything like that which i’m glad about but it’s no joke. They tell you the symptoms like tiredness for example and you think well that’s okay! Who doesn’t get tired?! What you don’t expect is the level of intensity of everything. I can be absolutely fine, feeling great and then joint pain kicks in (another side effect) and my energy has gone from 100 to -50 in no time at all. No time to adapt or do anything about it which really annoys me. That’s where i’m learning. It’s okay to feel blah! It’s okay to need to hold on to somebody to walk for a bit. It’s okay to not want to eat one minute but then steal someone’s food the next minute! I’m learning what my body can do right now and i’m happy.
The doctors say that as chemo progresses it is almost in two halves. So my first session is when I would have felt my worst and that bit is all done now. My next session, I won’t feel amazing but it won’t be as bad as this time and then the one after that i’ll feel more like myself! Then it starts all over again as the medication changes but that’s cool, i’ll know what to expect then!
There are still more joys to come, after the seizures I don’t want to use the cold cap at chemo anymore (it’s meant to help preserve your hair) so that means my hair is going to come out. That seems to be my bodies birthday present to myself as it’s already coming out even after using the cap on my first session! I can turn that in to something positive though, think how quickly i’ll be able to get ready if I don’t have to do my hair?! It’ll be a miracle! I’m trying to be as positive as I can and luckily i’m surrounded by a wonderful group of family and friends that honestly I don’t know what i’d do without. You all have made the last month and a half so very easy for me and as much as I know some of you are putting on brave faces it’s going to be okay. I love all of you so much, and I can’t thank you enough for what you all do for me, xxxxx
Woman to Warrior 