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A little bit cringe but thought I’d try something new 🙈
A little bit cringe but thought I’d try something new 🙈
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.
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
So yes, last week I bit the bullet and joined a cancer support group. I’m not gonna lie, I was pretty reluctant to begin with. Most people will probably wonder why because surely it’s a natural part of life to ask for help and support at difficult times. But for me, I can’t really say I saw it that way. I saw it as something weak and even more isolating by just highlighting everything about you and that it’s for people with cancer. I don’t want it to be anymore obvious in my life! I don’t know why I care about what people think or their judgement towards it, because I don’t normally give a hoot what people think of me… I guess cancer, for me, is a bit of a sore spot. Yes, it makes me different but I don’t want to be seen weaker for it. People say “you’re so strong it’s amazing what you’re going through!” and it’s true, I am! Haha. But cancer does make you weaker. You’re tired more. Your bones ache. You’ve got a long list of medications that you can’t say the names but you know that they help you function. You have to have your “emergency” pack of stuff wherever you go;
And believe me, these emergency pack supplies are not just random items! They’re items I wish I had on me at some point. Driving down the A34 at night, throwing up on yourself because there’s nowhere to pull in and you have nothing in your bag to use, you’re not gonna chunder in your amazing new hat you’ve just bought, you’ll just wish you had that sick bag! The anti-poop pills are probably a bit if over caution because I don’t have any juicy story where I actually shit myself! I have managed to maintain that small, and only bit of dignity. I guess that is my constant fear of being that person though… Because at the hospital I’ve seen it happen to other people… And it’s not fucking funny then.
So the support group, I did see it as another form of weakness, judge me all you like for thinking that way because that’s what I thought. I like to be independent and strong and only need the basics. When my mum first suggested the group to me I wanted to cry. I wasn’t a depressive about this, was I? I’ve been doing OK! Why do I need to go to a group and chat about my feelings? The self preservation side of me doesn’t want to make new cancer friends… What happens in a few years time if I’m still going to the groups and I find I’m going to funeral after funeral?
So I sat on it for a few months and just thought about it. I kept going backwards and forwards driving myself crazy just thinking about it.
Because with all of the negative sides, I kept thinking what if I could help someone else? Just because I’m doing so well in my self mentally, doesn’t mean someone else is. That was a strong factor for me. It kind of counteracted all the negative points for me.
So on Saturday, I thought screw it, I’m gonna go. So I did. I went to a cancer support group called Shine. They help cancer sufferers and survivors in their 20s, 30s and 40s. They meet each month doing different activities on a casual basis. So this month we met in a pub and just sat chatting and drinking all afternoon. There was none of this ponce of “Hi, I’m Amanda and I have cancer…” sort of crap. I mean, yeah, being the newbie they wanna know your story, but you get a story back in return so you’re not the only one on show! And my god… I tell you, some other people’s stories are just so heartbreaking… Man alive, does it put life into perspective. It’s in no way all doom and gloom. It’s a support network. These people are there for each other in ways that friends and family just can’t… They can relate.
I really wish it wasn’t called a support group though… Because still, in my mind, it sounds weak. But these people aren’t weak. They’re superheroes… So this week, I went to a cancer superhero group.
See! Sounds much better, right?
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.
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!
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…
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.
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.
Even just a ‘hey, how are you?’ when the world around you has turned into an unstable mess can mean the world. You may read this with skepticism and think how? But there were days that I would struggle to even think about getting out of bed, let alone actually do it. So a ‘hey, how are you?’ can really go far. It gives purpose. It gives hope. It gives you a reason.
Now, I’m not gonna lie to you, there have been many times those ‘hey, how are you?’s went unanswered… Why? Well when your arse has been ripped raw from being burned from radiotherapy and you struggle to climb in and out of a car to go everyday to the place that’ll make you better, but you know in the short term will make you worse, you do get a bit wrapped up in your own self-absorbed world. Please don’t pity me or my arse rubbed raw story. Haha. It’s all better now and you would never even know. 😉 however, I may look at our pothole filled roads in a whole new light!
Now, I’m not randomly going up to strangers and cuddling babies, you don’t have to worry about my sanity quite yet. Haha. But I’m finding that I’m of that “age” now where babies, engagements and weddings are becoming a frequent occurrence. Having one of these factors of mine altered, and I say altered because it’s still possible, remember! I’ve started to question aspects of my life. Nothing is ever going to change what has happened but I think it’s healthy to look at things differently. But it’s another “why me?” 😫 kind of moment, unfortunately, because say for example, I did decide to foster or adopt, every aspect of my life will be under analysis. And that’s fine, I don’t have anything to hide, as you already can tell! But it wouldn’t have been this way if I was 16 and pregnant… Damn it!
I received a very generous message this week from a friend and her situation with cancer. I won’t go into the details because it’s not my story to tell but you just don’t realise or appreciate how many people cancer hits. I always knew that she was attacked with the nasty little bugger that is cancer before I even met her, but I can’t help but wonder if she had enough ‘hey, how are you?’s I know her story was before I even knew her but I certainly know I didn’t give enough ‘hey, how are you?’s after. Because although my cancer story will soon be behind me… It never really will be fully gone from my life. That little bugger will always be niggling at the back of my mind.
Every cancer story is personal and different. You could find you have exactly the same cancer as me but that doesn’t mean the situation is the same… Or the treatment for that matter. In my radiotherapy days, as you’re up at the hospital 5 days of the week for it, you start seeing the same people up there. And slowly, as treatment goes on and on and on, you never see them again. You think “they’ve made it!” like it’s some sort of game and that they’ve reached the top level. It’s weird seeing these people everyday at the worst moment of both of your lives, never to see each other again or to never know what happened to them…
There have not been many days where I have been caught up in my emotions and been pleading the “why me?” card but this last week has most definitely and unfortunately been one of those weeks that I have found the most trying. Damn me and my overthinking brain!
Some pictures of me and my awesome friends. I wish I took more pictures! Me and my prosecco filled self didn’t even think to capture this day more! 🍾
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.
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.
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!