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!

When rationality ups and leaves

What happens when the rational level headed girl I used to be starts to lose her mind?
Its been a long week this week. I expect you all have been looking forward to this short working week so you can relax for the Easter holidays.

My mind has been burning over time. I’m pretty emotional this week. Not over anything in particular just the usual, the next step.

I’m starting to make plans again. I’m off to Switzerland in a few weeks, that was the first plan I made.

A mother fucking holiday.

I’ve been thinking a lot too about what happens after my next scan.

If all goes well it will be work.

I can’t seem to write what I’m feeling at the moment I feel like it’s all over the place.

Work is such a simple step to get back to. Then why does it scare the living shit out of me?

Its not the thought of going back to work. Apart from this whole shit storm that’s been my story for the last 15 months I’ve always worked.

Its the whole what do I do? I feel so fucking lost. As hard as I try to stay the same person that I used to be I’m just not. It’s impossible to be that person anymore.

I had a cough this week. Well… I convinced myself I had a cough. And I convinced myself that this cough was coming from my left side. The left side that they’ve not treated. The left lung that they decided the tumours were too small to treat with radiotherapy.

How do you keep a rational and level head? I’ve forgotten.

I will forever be this person that is a hypochondriac that thinks they are dying of cancer before anything else.

I was asked a few weeks ago if I’ve ever considered not making cancer my life.

Kind insensitive right? It’s shitty comments like that that stick with me. It’s hard for it not to. Is that how people see me now? This boring cancer story. It wasn’t meant in a malicious way or for me to take so sensitively… But how can I not? This is my life now.

My friend was explaining to me her feeling of anxiousness. I’ve never really understood anxiety having never experienced it myself. I understand the workings of it. And I’ve always respected those who have to deal with it but I’ve never really experienced it for real.

I wouldn’t say I have anxiety. (Reading this you would probably say that I do) But I don’t.
I just actually understand it now. You know that lump in your throat that you get when you feel a little emotional but you don’t want to show it? And you try to swallow to get rid of it but that doesn’t work? I’ve got that but instead of my throat it’s in my chest like right under my sternum. And it’s not a little lump it’s the size of a tennis ball I would say. It’s not always there. It just crops up when I’m making plans.

What if I have to cancel them?
What if I get sick?
What if I make people upset again?
What do I do?
How do I live my life?
Do I have a headache coz I’ve not drunk enough water today or is it something else?

It goes on and on and on.

These questions just never shut up.

Its continuously going round and round in my head. All I want is for it to SHUT. THE. FUCK. UP.

When the cancer clock keeps on ticking

Cancer…
Cancer…
Cancer…
It doesn’t get better the more you say it does it. Damn.

I’m in this bloody lingering place of limbo again 🙄 I feel so useless. I feel forgotten.

All I’m doing is waiting until they can scan me again in a couple of months. When you’re going through treatment you feel so awful physically but you feel good (or at least I did) mentally because you know something is being done.

I’m waiting on fate to give me some luck now. It’s out of my hands. Fate has not given me much luck previously. Fate is a bitch.

My story isn’t so juicy when you’re waiting so you tend to lose a lot of interest from followers. I’m not at the start of diagnosis where it’s a shock to everyone and I’m not dying right now so there’s just no juicy gossip to pass on. I’m stagnant with my diagnosis at the minute.

I’ve taken to reading a lot of cancer stories in the newspapers lately. It’s probably because they catch you with the title “woman, 22, survives cancer against all odds” or “man survives cancer by eating lemons”. They like to draw you in with the catchy and unbelievable titles 😂 …and man alive… Am I gullible. But to be fair once the cancer train has hit you its hard to pass over these stories.

You have to go careful when reading these stories in the media. I feel like everyday I am coming across some natural remedy that will beat cancer. Some story of some person who was on deaths door and took this magical natural remedy for a period of time and boom! They’re cleared! It’s so hard not to get wrapped up in it all and believe this magical cure can work because sometimes they give you false hope. I’m not feeling hopeless at the minute but I’m feeling realistic. I believe some of these stories are true but I’m also aware on how rare they are. I’m not opposed to trying some new found hippie dippie cure if it works I would try absolutely anything to survive this. I’m very much aware of my internal ticking clock that cancer is now dominating. Tick tock, tick tock, tick tock…

I’m not going to tell you what hippie dippie remedies I’m trying because I don’t know if it’ll work and I don’t want to give others false hope. I’m also doing it for other reasons too that aren’t just related to cancer.

My body has aged. I don’t know how old my body is now but it’s certainly not the nearly 30 year old I am. It’s probably at least doubled in age. I wake up in the mornings unable to move my hands straight away. There are pains in my knuckles. It takes me a good couple of hours to loosen up in the mornings and feel like I can start the day. My knees at the end of the day ache. Like deep down in the bone hurt. Bending to sit hurts and getting up and down off the floor now means I make those old people noises I never did before. If I’m really tired they sometimes give way and I get a bit unstable with my balance.

These hippie dippie natural treatments that you hear about will never be researched further if they do work. Drug companies can’t patent a natural formula so it’s not profitable for them. It’s all to do with politics. But I’m also aware that if it did get to a serious stage where I’ve exhausted all medical treatment options I will never be offered a clinical trial. My cancer is just too rare. Clinical trials are for the “popular” cancers.

I am doing my own thing. I do my bit of research and I choose my own path. I’m not shunning medical treatment. Please don’t interpret this into something else. I’ve finished my treatment so it will not affect any medication or treatment plan. I just feel like I’m waiting on something that’s out of my hands and I want to take back control.

If I have to go back onto treatment then I will talk to my consultant or I will stop what I am doing if I am advised to. I still have my faith in my medical team. I just feel like because I’m not dying right now I’m not important to them. Which is great! It is! I’ve come to the other side that I thought I’d never reach but I’m also in no man’s land.

Its hard being left with your own thoughts. Your mind can be so torturous sometimes.

On a happier note, I went to a wedding on the weekend. My best friend of 19 years… Yes, Emily… That is correct, 19 years! Got married! I was super excited for the weekend not only for her but for me too! When she first planned her wedding I could not give any solid answer to her RSVP because I didn’t think I’d be well enough. At the start of her engagement it was hard for me to see 7 days ahead let alone 8 months! Wow… 8 months. Look how far I’ve come! 8 months ago I had just been told my cancer had gone metastatic and I went back on an immediate chemo plan.

So with all these wobbly moments where I feel lost, forgotten and unknown I just need to remember how far I’ve come. How much stronger I am physically and mentally now.