Dot to Dot

Radiotherapy Tattoo Dots

You probably don’t know why this picture is here. It’s here because it shows one of my radiotherapy tattoo dots.

So, what are these dots? These are my radiotherapy alignment dots. They are little tattoo marks, permanent markers, the only external evidence I have that shows I have had cancer. These dots are used in conjunction with some laser lights to line my body up for each external radiotherapy appointment. Generally, it is the alignment that takes longer than the radiotherapy itself.

I’ve discussed previously in Baby, it’s just never gonna happen the physical effects radiotherapy had on my skin but I’ve not really told you about the process of what happens before radiotherapy begins. There’s a planning radiotherapy session which is where they measure your body, weigh you and mark you. They need to be precise and accurate, it’s important that the alignment is perfect every time because the radio-beams have to hit the tumour in the exact same spot at every radiotherapy appointment.

I have 6 of these radiotherapy tattoo dots positioned on my body. I’m literally a dot-to-dot! 4 from my first encounter with radiotherapy, two on my hips, and two down the centre of my body; on my sternum and pelvic bone. The other 2 are additions from my second bout of radiotherapy; they are on either side of my ribs lining up perfectly with the one on my sternum.

When I first got these dots I had 4, all I could think of was getting them covered up or lasered off as soon as I was finished with my treatment.

looking back I’ve come to realise I’m glad I didn’t jump to get that done. I didn’t get to that part mostly because other treatments took over or I wasn’t in the best health.

Teeny Tiny Trophies

By the time I accumulated 6, I realised they were a part of me. A part of my story and how I am here today. I’m not ashamed of these dots. They sit there like little dark freckles. They’ve seen me through a lot.

My skin falling off in chunks, they were little helpers in blasting away my tumours and they are the only physical proof of what I’ve been through. You see, I’ve been lucky in my treatment, I have no scars on my body from it. surgeries were always performed by other means instead of incisions and my chemotherapy was always administered intravenously, so I have no port scar.

These radiotherapy tattoo dots are my little trophies.

New Tattoo

So last week, I got 6 tattoos. Real ones, to sit next to these little dots. I don’t want to cover these little heroes up any more. 1) because I actually don’t mind them but most importantly, 2) they may well be needed again in the future. These new 6 tattoos have the same theme. I got 6 bugs. They all match quite beautifully. To the unobservant eye my radiotherapy dots are probably invisible as the detail of the new tattoos take over. I don’t care, I know it’s still there and that’s all that matters. These tattoos aren’t for showing off, although I will show you a couple of them, I’d probably get done for public indecency if I went parading around showing them off willy-nilly. Tattoos aren’t for everyone, and if I’m honest, I probably wouldn’t have had them done if this was me 2 years ago. I have no regrets to getting these bugs, I’m actually pretty in love with them. I don’t have a favourite or anything like that, they are all just as equal in my story.

The next 3 months

Last week’s new additions coincided quite perfectly really as I’ve been cleared for the next three months. This No Evidence of Disease is lasting longer than I ever anticipated and I couldn’t be more relieved. I did however do something unintentionally silly the other day though… I googled.

You see, I’m starting to realise that with my life restarting my blog is probably looking a bit boring to people now, (sorry, not sorry!) So I’m trying to make topics that are a bit more useful in relation to gynae cancers and stuff. In my little research hour I discovered a little snippet that said once cancer metastases, recurrence generally happens within 2 years, or it was something along those lines. Well that’s a bit of a bugger! As far as I can say, I’m 6 months clear of it now and I’ll take it. It’s annoying living with the 3 month segments but I’ll take whatever I can, some people are not as lucky as this.

Here’s 3 of my bugs… the other 3 are a butterfly, dragonfly and a bee. Any wonkiness is purely down to the photo taker (me) they are actually perfectly aligned as the radiographer’s did a pretty accurate job measuring it all up for me.

Just a note…

The tattooist hasn’t touched the original radiotherapy tattoo dots… they have naturally bled out over time and also, it’s not really important for them to look pretty. Another one to note too is that I contacted my oncologist in regards to getting these so don’t go altering any of your own radiotherapy tattoo dots unless they know and approve!

19 Days and counting…

It’s strange, I don’t really have anything interesting going on this week. Mum’s gone back to work now that I can function better and actually look after myself. Haha. It’s great, because it means our life is returning to some sort of semblance… but it’s not quite there yet.

I’m still waiting. That dreaded awful waiting. I can’t really do anything until I know what will happen. It’s like the big fat elephant in the room. I’m trying to give my life a bit more of a routine so I won’t end up a lazy slob addicted to daytime TV. I’m trying to exercise in the day and give myself a bit of a better diet. I don’t eat bad as it is but the last load of antibiotics they put me on has really knocked me for six and I need to find my balance within myself again. The trouble is as soon as I’ve distracted myself with some sort of task that elephant is back there staring me in the face. It’s funny, looking at me now you could pass me in the street and you wouldn’t even know anything is wrong. I’ve done a complete 180 and I would say I’ve returned to health like before all this happened. I try to look back and find where it all went wrong… December was definitely a write off and November was a bit icky but I wouldn’t have said I was bad then. I guess it all started to go wrong in October… Or well obviously go wrong looking at it now.

I’ve never been much of a complainer when it comes to life. I always try to see the positive things and I’m pretty sure in my whole working career, from the age of 16, I’ve only ever taken one sick day… I know right, one! And even then I remember phoning up work worrying that I didn’t sound sick enough. I guess on that side of things I’m a bit of a goody two shoes. There has been many a time where I’ve gone out the night before a shift, partied hard but still rocked up to work wearing last nights make up, having only had 3 hours sleep, if that, hanging out of my arse bitching about why I didn’t pull a sickie. But I always managed to get myself to work and… semi function. Even if I felt rough as hell I saw it as my own fault. I did this to myself so I have to carry on. Now, my hardcore party days are pretty much behind me, they’re few and far between so I’d say I’m probably more of an all-day-catch-up-with-friends-drinker now than a go-wild-until-the-sun-comes-up-party-animal.

I don’t want to live my life stuck in a rut. Finding that I’m working to live and never going anywhere. I said when I was going through treatment that I’m gonna make the most of this summer. If I want to go to the coast. I’d go. I’ll see friends up north, down south, wherever they are I’m going, and I’ll do what I want without the restrictions. But in reality, is that even possible? I have to work if I want to go and do these things. I want what everyone says they want, full-time pay with part-time hours. Its just never enough. You want more and more and more. But I’m gonna try. I’m gonna try and not let my life become too predictable. I’m gonna try and go and do all the things I want. I’m gonna try and find that job that has a full-time wage with part-time hours. Haha.

Me and my sister have made this plan to travel a bit next year. For years we’ve kept saying we’re gonna go here, we’re gonna go there and life just got in the way and we never organised it. So when all this cancer crap kicked off that’s the first thing we said. We’re gonna do it. If cancer isn’t a good enough opportunity then when is?! So when I was going daily to my bloody radiotherapy appointments that’s what I focused on. “This time next year I’ll be here…” “This time next year I’ll be there…” It started to become a bit of a mantra for me. Because life was moving on for everyone around me and you try not to resent it but it’s hard.

We’re gonna try and get flights out of the country for the end of the year. That’s when the shit hit the fan and life really flipped on its axis. So we thought it would be quite fitting to be going out and around a different country a year to the day since my diagnosis, a year to the day that chemo started, a year to the day radiotherapy started and so on. Trouble is, this whole waiting again has put this on hold. I can’t book my flights yet. What if I end up having treatment again?

Ergh… This is just so annoying now.

I hate this.

I hate it.

Its driving me crazy that I am semi normal again but I can’t do anything! I’m fidgeting. Which is a good thing when you think about it because it must mean I’m recovering well. When I was poorly it was hard to keep focus on anything. I’d just sleep the majority of the time but now I’m bored! I can’t direct my life back on track if I don’t know what is ahead of me.

People keep saying to me that they think these latest results is just an infection. Which is really sweet and I’m grateful for their positive thinking and kind wishes but I can’t think like that. I think its cancer. At least that way I can’t be disappointed if they tell me it is. I’d have already prepared myself. If I start thinking it’s an infection now then it will kill me to know     (…Can I say that? “Kill me to know”? Screw it I’m gonna say it) that I’ve still got cancer.

13 days until my next scan

19 day until I know what my next step in life will be

Waiting, Wishing, Hoping… The results are in!

Waiting…
Waiting…
Waiting…
That’s all my life consists of at the moment.
Waiting…
Wishing…
Hoping…
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The Wait

Cancer results week: The most anticipated post to date yet, I expect. I’m not nervous of the results because whatever it will be will be… (Que sera, sera?) Haha. There’s nothing I can do to change it but it makes me anxious.

Its funny, it’s not the cancer that can send your mind crazy: The fact that you’ve got it, that it makes you think of your mortality or even that it changes everything in your life. It’s the waiting.

You’ve got cancer. Wait. We need to put a program in place for treatment. Wait. Chemotherapy starts. Wait. Radiotherapy starts. Wait wait wait. Scan. Wait. Brachytherapy. Wait. Scan. Wait. Scan. Wait. Treatment finishes. Wait wait wait wait wait. Scan wait wait… Meet your consultant… Shit… I’m waiting.

The Results

It has not been a good week this week. My results were great! 10cm mass? Obliterated! My lymph nodes are looking good, there’s slight scarring where the tumor was but all that was bad is now good in the gynae department! Woohoo!

But…

There is a suspicious area on my lung… What? I like my lungs. I need my lungs. My lungs are pretty fucking important! They’ve been pretty bloody reliable for 29 years so far! Don’t start this shit now!

I’ve been told I have a “fluffy” area on one of my lungs. It doesn’t have much density to it yet so they can’t do a biopsy. It’s only 9mm in size so it’s nothing to be too worried about. It could be an infection. It could be cancer.

They’re treating it as an infection for the time being so they’ve put me on some pretty strong antibiotics. They don’t think it is an infection though.

There’s nothing they can do whilst it’s so small and “fluffy”. So I’m back to waiting.

After the course of antibiotics, they’ll scan me again at the end of the month but I won’t see my consultant again until the start of August. So I’m back to the old game of waiting…

Waiting…

Wishing…

Hoping…

The time loop

The worst bit of all this cancer malarkey is your life gets put on hold. Cancer becomes your life. I’ve tried hard to not let it define me but it’s pretty fucking hard when that’s all that you’re faced with day in day out.

It’s exciting times at the moment with friends. I’m at that age where everything is happening. New homes bought, engagements, weddings, babies, new relationships, career changes, all exciting things. And I am happy and excited for all of them, I really am. But it’s difficult.

You can’t help looking at your own life. My life is on hold at the moment. And that makes me sad. I don’t see my future at the moment, for the first time ever I really don’t. And I don’t mean it in a morbid way, like I’m not gonna be here to see it. Because I’ve never felt that and I still don’t. I just don’t see the next step. I’m just frozen in this fucked up time loop of waiting.

Stolen happy moments

I’ve found this week pretty hard. Not just for myself but for others too. I feel like this amazing and incredible thing has happened. But it’s been shat upon by this stupid “fluffy” mass that may or may not be something. It’s not just a step back for me but for my family and friends. I don’t like to upset people and this is upsetting people all around me.

If it turns out to be an infection then it’s just stolen my happy moment. Next month with my consultant will be just a relief. My happy-thank-fuck moment will have been snubbed out. If it turns out to be cancer then it’ll just be another game of treatment and waiting with the repetitive bore that comes along with it. And when I do beat it the next time, it will just be a relief. I’ll be happy, but probably not as happy and as excited as I would have been this week.

Whoa, oh, oh, oh, oh, whoa, oh, oh, oh, I’m radioactive, radioactive!

As I write this post I’ve just had my 3 month post chemotherapy, radiotherapy and brachytherapy PET/CT scan. Basically the scan that’ll tell me if I’ve kicked cancers big fat hairy butt!
And for the whole day I’ve been pretty chuffed that I can sing Imagine Dragons song Radioactive at the top of my voice and know that it’s true! Well you gotta look at the good side to all this!

I can’t help but feel that this PET/CT scan holds my life in it’s hands more than ever. There’s nothing I can do about the results. What will be will be. I don’t feel like I have cancer anymore but you can never really know. It’ll be a hell of a lot more devastating for me, my family and friends if the results come back that I’m not clear of it. All because I do feel pretty normal again.

Back in January, just 5 lowly months ago, was when I had my first PET/CT scan. It’s hard to believe I’m the same person today. At 5’11” I was 8 1/2 stone, which is just under 54kg. Massively underweight for my height. I was in hospital, not yet fully knowing what I was dealing with… But I’m pretty sure my family did! The sneaky buggers didn’t tell me I was already in a cancer hospital! Haha. Hey, I told you. Before all this I was completely oblivious to cancer! I knew where I was I just didn’t realise it was a cancer hospital.

The PET/CT Scan

So with a PET/CT scan they inject you with some radioactive stuff that goes all round your body and highlights the cancer and any other suspect areas that it may have gone to.

January’s results showed how extensive the cancer was… A 10cm mass and that it was becoming a little bit suspect around my lymph nodes in my stomach region… I wanna call them my illiac nodes? As I said I’m not a doctor but I think that’s what it was.

At this point, although it’s scary knowing how big the cancer is I didn’t care. I was in pain, sleeping most of the day away and barely eating. When you’re in that much discomfort you really don’t care what title it is you’re dealing with. You just wanna feel better. And yeah I had cancer but I always looked at it like it’s cancer, it’s not cancer cancer.

I see cancer adverts these days where they’re telling the actor on screen and they’re devastated. They portray how isolated they feel and how life changing it is and yeah… I can kind of get where they’re coming from but for me, it was never like that. Life goes on.

You don’t want to look so broken to your family all the time. They’re dealing with this as much as you and in a way you could say it’s worse for them. They can’t do anything to help. I slept most of the day away and was in a pretty high drug induced bubble of codeine, oramorph and paracetamol.

How I found out I had cancer

Do you wanna know how I first found out I had cancer? I find it funny but I know my family don’t. They were pretty pissed. Haha.

I had this cancer nurse come round early one morning and gave me a “how to deal with being diagnosed with cancer” leaflet. Turns out this nurse was gonna be my “cancer nurse” I couldn’t stand her… She just wasn’t very good at empathy but tried her hardest, only it turned out being a bit annoying. No… I don’t want to talk about how I’m feeling to you. But thanks.

I just remember getting this leaflet before the doctors had told me and thinking “oh fuck, it is cancer then”. I made a laugh and a joke about it to my mum when she came in but I can tell you she wasn’t best pleased this happened without her there for support and before I had an actual diagnosis!

So yes, today I’m singing radioactive as loud as I can enjoying the fact that it is very relevant to me and revelling in the irony that is my life!