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.

Not cancerous enough

It’s been a week of mixed emotions this week. So I received my phone call from my consultant for the next plan of action and I can’t say I was best pleased with the plan.
And strangely enough I surprise myself by saying this.

So the right lung where the bigger tumor is will be treated with radiotherapy. This will begin this week and I’ll have 12 sessions. 12 sessions seem like a piece of cake after my 36 sessions last year!

And the left lung? Well they’re just going to leave it.

Apparently chemo has worked too well. I’ve been told I shouldn’t have improved so much between the scan after chemo 3 and the scan after chemo 6. They generally don’t see any difference between the 2 scans so to find it’s shrunk again means I don’t fit into the normal cancer category… Again.

So basically the left lung doesn’t show a distinctive enough tumor. Which is great! Hooray! I’ve kinda beat cancer!

But because the left side is so small they can’t really target it with radiotherapy… So now it’s too small.

They’ve decided to just leave it to see what happens.

Hence why my mixed emotions. I’ve been conditioned so much through treatment that treatment is good, treatment is important that it seems impossible for me to see this in a good way.

I feel like they’re leaving me to walk this dangerous tightrope of life and cancer. I mean the growths to the lungs occurred within 3 months then doubled in size within a month. This is a serious cancer they are dealing with. This is my life!

I trust my consultant and the work she’s done for me but I couldn’t help but cry when she told me that she’s not going to treat the left side. And never in a million years did I think I’d be crying over the thought of not having treatment!! Maybe I shouldn’t have bitched so much about chemo! It obviously worked too well!!

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. 

When narcissism is replaced with blissful oblivion

I’m in a really good place right now. I’m not sure what made me turn this corner and see things differently and I can’t tell you the secret on how I did it. It’s just something I’ve noticed in myself in the last few weeks. It’s probably my I-don’t-give-a-fuck-attitude but I don’t think it’s all that.

There’s just contentment. Weird I know in the state my life is in right now. I don’t know how I can explain it… Cancer is very much still in the forefront of my mind 24/7 but I’m not letting it rule my life. I mean obviously it does, but I guess I’m less bothered about it? Oh gosh, this is hard to write… I mean I’m bothered by the status of which direction it’s taking me in my life but I’m dealing with it.

I guess there is no word that exists for how I feel. Because any positive word detracts from what is going on and I’m still very much involved with it all. Positive words make it seem OK and makes it minor but this cancer isn’t minor. It’s a huge, horrible thing going on. It’s up all in my life saying “look at me!”.
Negative words make it all sad and worse than it is. I mean it’s bad… The worst it could be, but if I let that rule my life then I wouldn’t be the person that I am.

It seems strange, but I think my turning point was when I lost my hair. There was something very liberating about it. I really couldn’t give two shits about what people think when they see me. If you knew me a couple of years ago, you would have known I wouldn’t have gone to the supermarket without even doing my make up! 🙈 I look back on that now and think how shallow?! But then I think it was a time where my biggest dilemma in life was deciding what my plans were for the weekend… Oh how nice it would be to be back there. Narcissism and all.

When I’m out and about I’m very much aware on how people look at me. And to be fair their reactions surprised me. Most people didn’t care. They didn’t do a double take. They didn’t stare. They just went about their normal business.
To be honest though, I only go out when I’m well so they may look at me like I’ve just decided to shave my head. It seems to be a popular thing at the moment.

I say most people because I have seen people stare at me. And weirdly enough it’s the older generation and they’re in no way subtle about it. They literally stop dead still, stand and stare. And they don’t even look away when I catch them doing it! 😂 I don’t let them get away with it (that’s the best bit about having cancer, you really don’t give a shit) I’m not sure why the older generation are so obvious. Because those who know me, know subtly is lost on me so they really could get away with it if they’re discreet. I’m not sure what they’re seeing… Maybe I’ll ask next time I catch them staring. A walking time bomb… Cancer… Or just a fashion statement? I’m just not sure.

Now the weather is getting colder I’ve had to buy a hat so I blend in better with everyone else. I don’t care about blending in, but it’s freaking cold when you have no hair!! I’ve also gotta be sensible about these things. I can’t risk getting a cold for how I look for the sake of being defiantly different.

I’m playing the big fun game of waiting again. I don’t really know what’s going on until I’ve had my 3rd round of chemotherapy and they can scan me again to see what the cancer is doing. I’m not so bothered that I’m playing the waiting game this time round. Last time it was torture. The not knowing. But this time… I’m in this blissful place of oblivion. I guess you could say it’s a form of denial. But lately after every waiting game I play I seem to get bad news. So yes, maybe it’s a form of self preservation but I feel good in myself and how I feel, so this waiting game at the moment I am fine with. And I can play it a lot longer if it means I don’t have to find out the outcome. But that will never happen. I will find out my fate eventually no matter how much I mentally scream and cover my ears.

Feeling Fake

I’ve debated quite a lot about whether I should post this. I don’t like to worry people and I don’t want people to treat me differently by treading on eggshells. If it’s anything like the last few posts then I expect I’ll get a lot of messages… Or not. Haha. You may not care! 😂

But I want to be true to myself and I said when I started this that I would give the honest truth to everything. It may be hard to hear at times and it may be stuff that people don’t want to hear about but it’s my life. The good the bad and the ugly. This. Is. Me.

I feel fake.

Everything I seem to do at the minute is forced. My smiles don’t come so easily and my positive vibes are lacking.

When I knew what was going on I could deal with it. There was progress. I may have felt shit day in and day out but I knew treatment was working. I was one step closer to getting my life back.

I don’t know what’s coming. I’m lost. I’m sad. I’m feeling fake.

I’m not depressed. I think that word gets thrown about too much. I’m just sad. I’ll get over this eventually… Probably in about 2 weeks.

I found out last month that I can’t donate blood anymore. That’s just another thing that makes me sad. After having 10 units of blood back in January it means I can never donate again after the whole blood fiasco in the 80s. It’s another piece of my old life I can’t do anymore.

I feel like I’m kind of short changing you guys at the minute. This was meant to be the stories of a happy smiling cancer girl 😂 and it’s been lacking in the happy and smiling aspects of late! I promise, I’ll buck up my ideas and get back on track soon.

I’m in a funk but I’ll deal with it… Like everything else! This won’t last.

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…
IMG_20170703_094024_554
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.