The Happy Smiling Girl

The Happy Smiling Cancer Girl

I turn 30 this week… I find it a little surreal. 9 months ago I couldn’t see myself getting to this point. Not because I didn’t think I’d be alive to see it but because your life get puts on hold and you just can’t see the future.

I’ve been a bit quiet since getting my latest results. I couldn’t trust my emotions for a while, and describe how I actually felt. It’s a bizzare feeling getting declared no evidence of disease. You would think it’s all happiness and good vibes but in reality it’s just as emotional and soul destroying as the bad news.

You’re probably wondering how.

Well my first thought after getting my good news was “well what was the fucking point of all that?”

For the last 18 months my life has been thrown inside out and has been destroyed. Anything previous that I had achieved became meaningless. Forever more my life will be tainted by this stupid fucking disease.

So yes, although I breathed a sigh of relief, and I am at a point that I dreamed I would never reach, I can’t help being pissed.

I will still be living my life in 3 month periods and this will probably be like this for a while until (if it gets that far) I’m clear for a while then it’ll go to 6 months, 1 year and so on.

My oncologists doesn’t want to expose me too much to CT scans and such. I’ve had a hell of a lot of exposure to it already and there is just no knowing what I will need in the future. So at the moment, I’m rotating between chest x-rays and CT scans.

Chest x-rays because they expect it to come back there first. Basically where the tumour on the left lung was, the tumour they never treated with radiotherapy because it was too small, they never actually expected it to go with chemotherapy alone. So my lungs are a weak point.

If I think too hard about it all it really does terrify me what my future may hold. It’s so bloody aggressive when it starts growing. I mean for crying out loud I never even felt any symptoms when it started on my lungs!! How are you meant to be prepared for something that you can’t feel exists?

I asked my oncologists if I could have monthly blood tests or something to detect if its active again. Just my luck my cancer doesn’t show up in the blood results.

For fucks sake! So what do I do?

I live.

I can’t stress over something that I don’t know what will happen.

I feel like I should be. I feel like that if it was anyone else they would be freaking the fuck out over it all but I’m just not. I mean don’t get me wrong, I do have the odd moment of “what the heck” but it’s not often. It’s the usual little late night niggles when you don’t drop of to sleep straight away.

Post traumatic stress disorder is pretty common apparently in cancer survivors. But honestly… I don’t really feel like a survivor. I haven’t survived this. It’s just been put on hold. I’ve not got “the all clear” that everyone talks of and there will be none of this “5 year all clear” stuff. It’s just inactive right now…. Well for all I know it could already be growing again! But I’m not thinking like that… All the time.

It’s hard not to feel like a grenade with the pin out! At any point I could go off and life will be chaos again!

So my what’s next for 30, chapter?

Well I want to use this to my advantage. Believe it or not I have a lot of cancer knowledge under my belt! It’s been a full time job with fuck all to show for it but my life!

I’m never gonna be a millionaire as cancer screws with the finances and your financial security but really… What’s the point in saving for when I’m 80? There’s no guarantee any of us are gonna make it that far, cancer or no cancer!

But whatever way I go out of this world, I wanna be happy with what I have achieved. Cancer is no party, and if I can help one person make their day a bit brighter when going through treatment or after treatment, then I’ve achieved what I set out to do.

I’m not gonna stop my blog. I still enjoy it and there’s still a fair bit of recovery to do. It will also link quite nicely with my next chapter in life.

Life goes on.

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Oh and if you haven’t seen my Instagram page yet, just an update: the curls are WILD!

Sometimes bad shit happens

Sorry, I’ve been slacking on the blog posts of late. You’re probably wondering what’s been going on! Well, in all honestly I can say not a lot. And its good!
And I apologise too for the title of this post. It is the only title I could think of where it put my point across well. If you didn’t realise it already then my language is occasionally fruity but it’s honest.

I did manage to finally go away. I took a break to Switzerland for a few days. It’s nice to finally have a plan that sticks!

Today is a pretty important day for me. It’s scan day. I’ll have my CT scan with contrast to see what’s left… Or worst case, if there’s more. I’m not really thinking about it to be honest. It’s like Pandora’s box if I flip that lid. I’ll get round to the worry and sleepless nights on the lead up to results day. There’s a word in the cancer community that I hear a fair bit.

Scanxiety.

I fucking hate that word.

The anxiety of a scan.

It can be a range of things. Anxiety of the scan itself, the preparation of it or just the results. If you’re going through this yourself you’re guaranteed to experience scanxiety at some point. You’re a bloody tough nut if you don’t!

For me, the scan, the needles, the waiting, it’s fine. It’s a process. I can quite easily shut my emotions off for this part and just go with it. There’s nothing more I can do so I just kick back and let the medical staff do their work. I’m just another number in their day, and that’s the sad part. How many people they see each day doing pretty much the same thing.

You know, if there’s one thing I’ve learnt from all this its how to get a good game face. And I don’t mean for the treatment itself or the cancer. Some days you do have to fake it to get by but I don’t mean that.

I’m different these days. Aside from the obvious why I’m different… I mean it in ordinary scenarios in life. And I find that fucking annoying.

But people don’t realise I’m different because I still act the same, unless I talk to them about it. It’s all about my game face. I act the same but inside my world is crumbling.

You’re probably thinking that these scenarios are extreme or that maybe I should avoid putting myself in these situations. That’s probably what I would have said before this because I wouldn’t have understood. But I can’t. Sometimes they just creep up on you like “ah ah ah! Don’t get too comfortable with life! I’m just lurking round the corner to screw your life up again!”

A lot of my internal freak outs are to do with family and death. I know… Morbid.

I’ve always been rational but now I’m thinking of situations where something bad is going to happen or if its a real internal meltdown someone’s going to die.

You’re probably worried about my mental health right now. Honestly it’s fine. I talk about this to my close ones. They know about my lockdowns. They probably don’t realise how often I have to do it but they can’t hold my hand all the time. As I said… It’s a process and something I have to deal with in my new life. I don’t need a therapist as much as you may disagree with me.

It just pisses me off that I’m now thinking of shit I’ve never had to think of before. I could probably resolve this a lot quicker by going and talking to my doctor but I don’t need another pill to pop. It’s intruding my life but it’s not stopping me from living it.

It’s crazy how your mind can fuck you up at times… I actually thought as I stepped on that plane to Switzerland: this plane is going to crash. Not: finally, I’m going on holiday! I’ve never been worried of crashing planes before. That pisses me off. It tarnishes all exciting experiences for me now. I hope one day to get to a comfortable place where disaster is not the first thing I think of.

I guess my worries are because I’ve had cancer doesn’t mean that I’m immune to other bad situations occurring. Bad things happen in life and there is shit I can do to stop it.

Fucking scanxiety… Yeah that’s not all I’ve got!

A few from Switzerland 🇨🇭✌💜

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.

Chemo: it’s not me, it’s you!

I’ve had enough. It’s taking its toll. It’s slowly sucking the life of who I am out of me.
Oh how over dramatic you may think but so very true.
Chemo 6/6… The devil. I am finally… Thank fuck… Done with you.

Its been a while since my last post. It’s all starting to take its toll and it’s hard for me to find the energy from within to concentrate on posts. So I’ve finally had my last chemo. It was delayed by a week due to my blood count being too low and dropping. I’ve had that the last few sessions but the bloods always rose when they tested it again. This time the chemo has finally shown its affects. I had a feeling this was going to happen.

After chemo 5 it took me much longer than normal to recover. I suffered quite badly with sickness and picked up a stomach bug (not the pooping kind, 😂 the awful cramps and can’t keep food down kind) from somewhere too. Scared my dad half to death by passing out and just generally felt like death warmed up for longer than necessary.

Chemo 6 has pretty much been the same. With a good 3 hours of last night throwing up 10/11 times hurling nothing but bile and generally wishing it would stop I’ve reached my limit. I mean… Not my limit limit as in treatment… Just my limit with chemo. I fucking hate it. I hate the incapacity I seem to have as a human being. For crying out loud who cries because they put their t-shirt on the wrong way this morning? I am emotionally and physically exhausted.

The one amazing thing I have to be thankful for to is to the nurses up at the Churchill hospital for being so accommodating to me. As chemo was meant to finish by the end of November it meant I had the whole of December free of treatment… Well technically I have a scan on the 28th but I’m not counting that. Being delayed an extra week they pacified me with my request and set me up for the 30th instead of the 1st 😇 it may seem silly to you because I still feel rubbish for the first part of December but these days there’s not a lot to look forward to so let me have my silly moment 😂

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That’s it… I’m DONE!

Chemo 21 and counting… 

I’m writing this one from the hospital today. It’s my chemo day. Session 5/6… Well technically I think it’s chemo number 14 altogether. 14… That’s crazy. And that’s 14 sessions not 14 chemos because if you want to get technical with how many actual chemotherapy treatments, as in chemo drugs, it’s 21… I think.

It’s stupid. You would have thought the amount of treatments I’ve had would be engrained in me. But it’s not. It all blurs into one now. I feel like I am here so frequently every session becomes the same. I’ve nearly spent a whole year in this state now… A whole fucking year. What a waste.

I’m finding it all pretty mentally draining now. I’m fine in myself 90% of the time but it can get to Wednesday/Thursday before chemo and it’s like a dark cloud engulfs me. I know what’s coming.

The day of chemo, driving into the hospital, I mentally feel like I’m a petulant 3 year old being dragged in kicking and screaming. On the outside I’m cool and calm taking it all in my stride. But inside… It’s a whole different story. I don’t want to be here anymore. Don’t make me do this. Please.

Its stupid really. I have to have this. Chemo is making me better in the long run. But I can’t tell you how hard it is for me to not cry and say no to something that in the long run will make me better but for the short term make me feel so fucking awful.

I think I’ve just reached my limit. Don’t worry, I’m not giving up or anything and I’m no way near that point yet but I’m just sick and tired of being pricked and poked and scanned and tested.

They took an x-ray of my chest today. Nothings wrong but my consultant just wants to see how things are going. This is to prepare me for the next round of treatment after chemo.

The x-ray will only give a brush over view. It won’t highlight in detail the tumors. But I guess it gives my consultant a bit more of a guide. Apparently I can’t have a PET/CT scan until 6 weeks after my last chemotherapy session. So I guess any scan won’t happen until the new year. At least I’ll have December and Christmas free of all this shit.

Ah man… What a long day. My neutrophils were low today. Which are to do with my white blood cells and how you fight infections with your white blood cells. They like them to be 1.5 and over but blood tests showed they were below at 0.85 so I didn’t actually start chemo til after 2pm… I’ve been at the hospital since 8am 🙄😩 but at least I had it.

Fed up of waiting, I can’t say I was in a great place this morning. You can probably tell from above. I just wanted to go home. But at least I had it. If I didn’t it would have been delayed to next week and that would have just been a faff.

I really think my new puppa Hugo has helped me. It may be coincidental but it’s the first chemo I’ve had that hasn’t made me feel lousy afterwards. I’m tired but that’s pretty normal. Let’s hope for a better weekend.