Amanda 2.0

I’m finding theres not really a lot to say in regards to life as it is at the minute. However I thought its about bloody time I updated you, so I decided to do a video this time. That way you can experience the pink hair in all its glory!!
I’ve found that as I’ve been experience all that life has to give me, I’ve been juggling the add ons to it too that I’ve never had to deal with before, like fatigue and old lady aches. Apparently my new lease of life comes with penalties these days… which I’m not best pleased about!

Along with this, I’m finding that I’m crossing new paths once again of unknown territory! Trying to discover where I fit within society and how I can adapt living with these new restrictions.

Apologies if my last post didnt interest you… I found I was getting a few messages asking for useful info so people could prepare themselves for the troubles that cancer brings. You probably found it completely irrelevant, but hopefully, if in time you have the unfortunate reason to need it, for yourself or someone you know, then at least you know where to go. The cancer life can be so daunting and distressing but hopefully, it’ll provide the very smallests of ease, to those who need it.

Please bare with me too… as life is coming out of hibernation I’m in the process of updating a few of my channels. My YouTube channel is looking way too basic for my liking, so once I get my act together I’m hoping to refine this as well as all the other networks that come with it!

Thanks for your patience!

If you wanna see more of me and keep uptodate with my latest videos head on over to my YouTube channel and hit “Subscribe”!

 

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!

The happy pessimist

I got some good news for once this week. Chemo is working! My scan from last week has shown an excellent response. The chemo has reduced the size of the tumors and one is barely visible. With this news it will mean that I will continue with the rest of my planned chemotherapy treatments.

I should be happy, right?

And I’m pleased. I am. But I can’t exactly say I’m over the moon, bouncing from room to room, can’t stop smiling happy. And why you ask?

Because this isn’t the end.

Yes, it’s a good result. But how long for?

I told you last time, after the devastating results from my 3 month post treatment scan it’ll shit on any other happy news in the future. And it really has.

I’m pleased. I am. And I’m happy for my family and friends that they’re finally hearing something good… But it is definitely shadowed by the fact that this isn’t it. Even if it clears up after all of the chemotherapy and whatever treatment follows after, it won’t be the end.

It will most likely come back. It might not be straight away. It could be 5 months, a year, 5 years, 10 years or more but it will at some point return.

Until they figure out a way to completely eradicate it from my lymph or blood… Wherever it is travelling from, its not over.

I’m OK with this. I’d rather it wasn’t this way but I’ve accepted my fate in life. I’m still positive about my diagnosis. Don’t misconceive what I am saying. Just because the news before shat on every other bit of goodness now or in the future, I am still positive about my treatment. I feel good in myself and I won’t let that stop me from living how I want to live.

Its just… I don’t know… The big fat elephant in the room that’s staring me in the face is still there. So I’m happy but I feel like I can’t truly be 100% happy because before I know it the rug will be pulled from beneath my feet again and I’ll be back to square one. And it’ll crush me.

But worst of all, it’ll crush the people I love.

I hate that this now makes me look at the other side of life. The more pessimistic side… That’s not me. But I have no choice. I have to be realistic.

So this week I am happy. But probably not as happy as I would have been this time last year had I received good news. Because although I am happy, any big fat sunny happiness I have now gets shadowed by the dark and ugly side of cancer. And forever will be no matter how small it may become in the future years… It’ll always be there in the background waiting to pop back up and ruin everything all over again.

On another note, apparently I have shingles! 🙄 I’m an anomaly again as I don’t have the “normal” symptoms. Just a rash on my back, other than that I feel pretty normal… Considering.

It shouldn’t interfere with my chemo on Friday thank goodness but bloody hell… Can’t catch a break at the minute! 😂

Hair today, gone tomorrow

It’s been a good week this week. I mean a really good week. This is what I was hoping for going through chemo. I’d have my bad days but I’d also have my really good days where I feel normal again.

Its funny, I look at myself in the mirror and when it’s like now, a good day, I think this doesn’t look like a face of cancer. Unless you know me and what I’m going through you wouldn’t know what I’m battling. I guess it’s a good thing because I have a respite from having cancer dominate my life. I mean on my good days it’s still there lingering in the background. It’s the first thing people ask if I haven’t seen them in a while and I still have to take my daily dose if medication that I never had to do before. But I’m not that sickly person where it’s obvious what’s going on.

Nobody sees me on my bad days. And I mean nobody. The only people who have seen how horrendous my bad days are are my mum, dad and sister. You might think it strange because don’t get me wrong,  I have a huge support network that would be there for me at a drop of a hat if I asked them to sit with me,  but I just couldn’t do that. I’m not sure if it’s to protect them or me. There’s a sort of vulnerability being that exposed to someone. They’ll be seeing me at my absolute worst. Maybe I’m being completely selfish by doing this but I just don’t think I could handle it if they treated me differently. I don’t think my absolute closest people would intentionally do that but I don’t want to be treated like I’m fragile. And I don’t want them to carry around that burden of seeing me like that. It’s tough. It’s not pretty. And when it’s bad it’s bad but on the upside when it’s good it’s really good.

I’ve had a lot of conversations recently on the next stages of my treatment and how I’ll be going about it. I think I’ve got a better perspective of it all this time round. Last time I was in pain and I just wanted treatment to get started. I couldn’t tell you what I was thinking or what I was going through coz I can’t remember. I was taking a lot of pain meds and slept 80% of the time.

But this time, I’m aware of quite a lot. Like for example, my head hurts. And I don’t mean I have headaches but I can actually feel that my hair is going to fall out. It’s strange I didn’t know that you could feel it. I’ve never heard any stories of this before so am I the only one that can feel it? Or is it just not talked about? I didn’t feel it happening last time but that could be because I was in pain last time so did the pain of the cancer numb out the pain in my head? The only way I can explain it is it’s a bit like when you have a really bad cold where it’s bordering on flu and your hair hurts. To move it, to brush it, to touch it. Or maybe if you have a really tight ponytail and you take it down at the end of a day and you get that relief but it’s a little sore. It’s kinda like that. I can’t help but imagine these little bugs under my skin munching away on my hair follicles. Haha. I knew what was happening but it’s only on my head I can feel it. I can’t feel it on my arms or legs where other hair is. So maybe my head is just super sensitive at the minute. You might just think I’m being paranoid and a little sensitive to the fact that I know I’m going to lose my hair. I’m not. I can pull my hair out. It’s not normal to tug your hair and be able to see 10+ strands of hair in your hand. Go on, give it a go. I bet you won’t pull any out, maybe just 1 but not a lot. I got mum to clipper my hair the other week when I finished chemo. I didn’t see the point in the 80s bouffant if it was all gonna drop out. I don’t mind it clippered. I’ve been told I can pull it off. Haha.

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Little things have become a little uncomfortable to me now that my head is so sore. Showering my hair takes a lot of courage to do. Just the shampooing motion through my hair hurts. It becomes a little less sensitive after about 5 minutes under the water but it doesn’t completely go away. Even pulling on a jumper over my head hurts. That was a discovery I found out this morning when I got dressed. 🙄 it’s even worse when I forget and I go and scratch an itch!

But other than the head,  things are all really good! I’m out seeing a lot of friends this week. Gotta make the most of it whilst I can!! I bought a skateboard too! 😂 maybe I’m being a bit ambitious with that one but I thought it was a good idea! It’s giving me something to do and I can get about on my bad days. Because when it is a bad day I can’t walk very far so I figured on a skateboard I can go further! I don’t think my mum and dad think it’s a very smart idea but hey, it’s getting me out so they’re not gonna say anymore. In time, I guess we will see! Haha

When your vagina lets you down

Oh gosh… So where do you begin? Cancer is a topic that you think will never touch you. Unfortunately if it does, you hope it is on someone who has lived a long and full life or maybe with wishful thinking, someone who is horrible and vile who deserves it. But that is not life. Sometimes life likes to kick you in the balls and says “hey! lets mix things up a bit!”

So Back in January, I was offically diagnosed with stage 3 squamous cell vaginal cancer. Now normally when you think of a 28 year old female diagnosed with cancer you will most likely think of ovarian, cervical or breast cancer. Vaginal cancer I didn’t even hear of before my treatment so I wouldn’t blame you for thinking of those first either!

If you look on the Cancer Research UK website you will see that vaginal cancer affects just 1% of the UK population in their lifetime. It is a cancer that is more likely to affect those over 70… now isn’t that a kick in the teeth? I’ve got an old lady cancer. Once my oncologist got into the nitty gritty parts of my cancer I found out that the survival rate is 40% after treatment! Well holy hell… How are you meant to get your head around that? Thinking about it now, are the statistics so unfair because these ladies have actually died from this cancer? Or is it because they’re so old and other complications occured?

Vaginal Cancer is also on the same strain as the Human Papilloma Virus (HPV). The HPV vaccine was introduced into the UK in 2008 for 12-13 year olds. In 2008, I was 20, so at this point I had already missed that boat to be vaccinated against it. In Autumn 2009, a catch-up plan was introduced to vaccinate all girls up to the age of 18. Looking back, I was aware of all the media hype concerning the HPV vaccine but as I wasn’t in the age gap that concerned me I was ignorant to it. Looking at it now though how much more is it a kick in the teeth that I was shy of just 3 years to be applicable for the very vaccine that could have prevented me from having cancer! Not only do I have old lady cancer, I could have been vaccinated against it if i was just a few years younger.

I like to think I’m special. Haha. With life showing me how unpredictable it likes to be I’m thinking I’m not gonna be the average Jo(anne)  when it comes to treatment and recovery. With the only thing positive in this whole thing, my age, they threw everything at me that my body could cope with. So in time I’ll tell you as much as I can the fun journey I took with Chemotherapy, Radiatherapy and Brachytherapy. Coz lets face it… I seem to be a pretty rare case as they keep telling me!