So, it’s about damn time I updated you all on what’s been going on. Thankfully, it’s not been anything sinister but it has taken a few adjustments navigating my way through life again. It’s been a little frustrating having delays, as I have a list full of projects to take on and work to do! All exciting, in the grand scheme of things! Take a sneak peek to the start of The Beauty Bus! It’s a Mercedes Sprinter conversion, and with any luck, I’ll be out and about by the end of the year.
Has it really been 2 months since I updated you all on what’s been going on?!
In a way, it is a good thing that I’ve been quiet… it means there has not been anything particularly eventful to report on. Life has been positively normal.
Just before Christmas, I had a CT Scan of my chest, abdomen and pelvis… my first proper scan since my N.E.D back in May. My previous check-up was a chest x-ray which just gives a brief overview of their concerned area.
I’m pleased to report that all is still continuing to be ok. There is obvious scarring where the tumours were and any “suspicious” nodules that they are concerned with, in particular, the left lung, still appear to be stable.
Stable = Normal
I think that is all I can ask for really when I get to this point. Stabilisation. It’s not an ideal situation but if I can stay this way from now on then at least it means I can lead a relatively normal life.
I asked my oncologist this time if it will get to a point that the gap between scans will increase. At the moment, I’m back for check-ups every 3 months and my only knowledge I have on cases like this is what I’ve picked up for film and tv, like everyone else I guess! I just want to be prepared for the day that she may tell me that the gap between scans will be extended. It may seem silly to you, but it’s my safety net. I may not like the 3 months wait each time but I sure do feel safe having it as opposed to waiting 6 months each time!
Well, it turns out I’m still that unusual case. She couldn’t really give me an answer. In all honesty, I don’t think she expected my N.E.D to continue for this long. I’m not really sure if I’m proud of that or scared… I mean, wahey! Go body! But also holy fuck there’s nothing they can go by.
What was the fucking point?
I’m in a funny place with myself at the moment. In a way, I don’t think I’ve ever been as confident or happy in myself, which is great. If cancer has given me one thing out of all this then I’m glad for that. However, I’m also questioning what the whole point of it all was.
I mean, there’s never really any point to cancer, is there? It chews up your entire life, spits it back out, stamps on it, gets a freight train and runs all over it again and again and again. It’s fucking horrible.
Tomorrow is my 2 year anniversary since being diagnosed. Aside from the obvious – of actually (for the time being) getting one over cancer, I am in exactly the same position I was 2 years ago. If not, worse, because I’m pretty much forevermore, financially screwed because of it.
And I can’t tell you how much that actually pissed me off.
I am very lucky to get to this point in life. It is not often that you get to this position of having your life back after cancer. I’m well aware that I could be viewing a different outlook to life right now, or may even experience it again in the near future. I am extremely grateful for what I have achieved but you can’t help questioning the point to it all.
This time of year is a bit of a challenge at times. It’s hard not to dwell on what has been…
Come February, I’ll be a year free of treatment… so long as February’s chest x-ray comes back ok 🤞🏻 This shit will still continue!
Building a Beauty Bus
In other news, I have acquired a Beauty Bus! Well, in all honesty, at the moment it is just a van but it will become the beauty bus with a bit of hard graft!
You may find it a bit difficult to see the vision I have in mind so I am hoping to vlog a bit more about it when the process begins.
Since my last scan results, I’ve started work again. It is only for a select few hours each week, it kind of sounds pathetic when I actually say to people how many! but It’s all part of the process of building my strength back up. I question if I’ll ever be able to get back to full-time work but I guess only time will tell. Fatigue is still a major issue for me, I can be fine one moment and the next I’ll hit a brick wall of tiredness and I’m done.
But really that is the whole point of my Beauty Bus venture. It’s not only to help others with cancer, but it’s to help me keep going too.
If you would like to donate to the beauty bus then you can do so here please share too!
Beauty and Cancer – The start of the journey
It has been a mental few weeks for me since the launch of the beauty bus campaign. It has been incredibly overwhelming how amazing people have been with donations and shares.
As you’ve probably seen, Stand Up to Cancer have launched the video that features me and my story. I didn’t quite anticipate how well that would all go, to be honest. I wondered if I’d be just another cancer story that blends into the background.
It’s funny really, I know everything about vaginal cancer. My statistics, the symptoms, the rarity of it. Especially that last one. I know how rare of a cancer it is. It is literally the lottery of cancers. But you can’t quite grasp onto the concept of how rare it is, no matter how many times you tell yourself its rare, until you get feedback of it yourself from people.
I’ve had loads of messages from people on their experience of cancer themselves or through relatives, how inspirational and eye-opening my blog is, it goes on.
However, out of all these messages only one person has come forward with the same cancer as me. Just one.
Now, I know there will be other ladies out there with the same cancer, most likely in the demographic that they should be in. They may not want to be in contact with me about it or are just sitting back watching. Not everyone wants to talk about their cancer and that’s fine. There is no right or wrong way to go about this.
It just hit me how rare it really is! Which is stupid, because I already know the statistics!
The long ride
I’ve been super busy the last few weeks since my beauty bus campaign launched. I have so many ideas to enforce, to reach my target and steps to take before I get there. The most important one updating my beauty qualifications to include oncology beauty treatments. It is a little sore spot that I have to do this anyway, I already know what they would be teaching me. But I have to do it for insurance purposes.
Cancer and beauty have never really sat next to each other very well in the industry. Cancer always seems to send up red flags.
So I did the course and it went well. However, it has just reinforced my opinion that this stuff needs to be included in the standard curriculum of beauty therapy. I shouldn’t have to be paying over £500 for a course where I already know it all. Especially, as a cancer patient myself. I don’t mean to sound bitter about it, but it’s hard not to when you can see the problems that you are faced with. The beauty industry may be opening their eyes to cancer and beauty as one but it is only really superficial. It needs to go deeper… but I’ll tackle one issue at a time, the first one being getting my beauty bus on the road.
I’ve had to take a couple off days to recoup from the course. With it being two days of full-on theory and practical, added to that it being in London, travel has made the days that much longer, I am pooped. Fatigue is a real trier during recovery. I didn’t quite understand the difference between tiredness and fatigue… but there’s a big, big difference. Mostly the fact that my body gives up on me when I’m fatigued. So, I’ve just had to switch off for a couple of days. I’m almost back to my normal self, so I’m cracking on with what needs to be done.
If you’d like to donate to help the beauty bus reach its target or would like to share what I am doing then please do. click on this link to find out more http://www.justgiving.com/crowdfunding/happysmilingcancergirl
So lets talk about what happens with your life after cancer, how it can still affect you well after treatment, when your’re trying to move on and pick up all the pieces after all its destruction!
I’m just writing it as it comes so I apologise if it goes off in places. I guess I’m using it today to vent my frustrations… that’s the whole point of this, isn’t it? It’s just an open diary that everyone can read!
As I’m sure you can tell, I’ve been getting my life back. Day trips out with friends, weddings, festivals. Anything I wanna do, I do, I have over 18 months worth of life to catch up on, you know!
A selection from Truck Fest at the weekend
Today I am tired. Down to my bones, dog tired. When I get like this It’s hard to move. Everything is sluggish. My movements, My brain. It’s a big self-pity fest and I fucking hate it. I get emotional and cry over the stupidest of things. That just pisses me off more. I am not an irrational person.
The worst of being fatigued is when I get like it my head hurts again. Not headaches I mean the hair follicle pain that I talked about before in Hair today, Gone tomorrow is back. It’s just constantly sore. I can’t touch it, sleep on it and when it’s at its worst wash it. It’s only in patches, running from ear to ear, on what I call my grandpa line. But it stops me from wearing my scarves and headbands for long periods. As you can probably tell from recent Instagram pics it’s growing fast, and up! So I’ve been using headbands to keep it up in this heat.
I’m finding I’m very forgetful at the moment too. I can quite literally be in the middle of a conversation and it’s gone. Or some one can tell me to do something and I’ve forgotten.
We’ve got builders round at the minute and I had to be told repeatedly what the orders of drinks were… and I don’t mean after a few minutes! I mean I was told, instantly forgot, told again, forgot, retold, forgot it’s enough to pull your own hair out! Hurting follicles or not!
Don’t even get me started on today. Working on my laptop, I got up to make said builders a drink (don’t worry, it’s written down now!) and came back to find my glasses. I actually had an “oh shit” moment checking to see if I have become that person who leaves them on their head and walks around aimlessly! But no! I could not find them anywhere! I even went upstairs to find them knowing full well I hadn’t been up there!
Turns out Hugo nicked them and they were down the side of the chair!! How the hell he was so gentle with them beats me but things like this actually makes me feel like I’m going mental… apparently he’s not on my side in all of this!
I’m just frustrated because I feel like I’m being punished for every time I go out and have fun. It’s like a constant “ah ah ah, don’t forget I’m still fucking here!”. I know I can’t expect to escape all this scot-free. That the things I have been through is life changing and most probably damaging to my body. But all I want is a fucking break from it!
It could be possible that within time, the aches, pains, emotional despair and self-pity will ease. If you catch me on a good working day, then I’m good. I’d say I’m like 85% back to my normal self.
This is not going to be a long post today… to be frank, I just can’t be bothered. Any suggestions to help with sore hair follicles will be greatly appreciated. Over the counter painkillers, showers and scalp massaging does not help.
Dirty Old Brasstards – This was a nice little discovery we made when we were trying to avoid the rain on Friday night.
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 experiencing 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 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 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.
Oh and if you haven’t seen my Instagram page yet, just an update: the curls are WILD!
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.
You know this one will probably be a fairly emotional one… For me, probably not you. It’s probably something you don’t really think about. And I’m not gonna lie… It’s a difficult one for me to write. I’ve debated HARD about whether I should post this… But I said from the start I would show all sides of cancer. The good, the bad and the ugly. No hiding, no editing, no lying.
So the strong, independent, feminist finds this tough to admit.
But sometimes I find this lonely.
And not in the sense that cancer is a lonely battlefield that you’re fighting by yourself. I mean it’s just me.
I have my family and friends that I’m forever grateful for but they’re not there when it’s dark. They all go home at the end of the day.
Now, I’ve always been an independent woman and I’ve never found myself co-dependant on anyone and the thought of myself becoming like that terrifies me. I’d hate to be that girl.
But there are a lot of things I have noticed in this past year that if I was healthy, I would give a good “fuck you” to but I guess as it’s a sensitive spot, cancer and me, I feel like if I ever said anything it would look like an overreaction 🙄 because I have cancer.
Let’s look back on a year ago. Just over a year ago, I had a pretty healthy dating life. I’m not gonna go into the details because that’s unnecessary and I’m very aware there’s family that reads this.
I was still talking to some of these guys when I was first diagnosed back in January. Every single one of them I told the truth and gave them an “out”. All of them said the usual “I’m sorry”, “that’s shit”, blah blah blah… To be fair, they all were pretty curious and it helped me, I guess, deal with it by talking about it. But they all said they wouldn’t just drop me. I mean what kind of guy would that make them?!
Now before you go off on one, this doesn’t make me a whore. None of it was a relationship. It was dating. Going on dates, chatting, usual 20s dating crap.
Me, being very cynical, didn’t believe any of them. I mean if it was flipped would I want to be involved with all that… Probably not. I know… How superficial and arrogant of me.
And now? I don’t hear from a single one of them. Even guys who I knew were interested in me but it never went anywhere don’t talk to me anymore. And I don’t mean this in an arrogant way where I had hundreds of guys chasing me because that’s not the way, but any interest has now completely dropped. I don’t even get a “hey, how are you going?” I’m not doing this post to be self centred saying that everything should be about me and everyone should ask me how I’m getting on with treatment or whatever, I’m just explaining how hard it can be adjusting to my new life and knowing that this will be it… I’m not being all woe me, please pity me. It’s just highlighting how different my life is now. This is the reality of cancer.
To be fair, I don’t blame them. I mean who wants to deal with this. But what I do have a problem with is the lies. I gave you all an out. But none of you took it.
So here I say fuck you.
Here I say look at me and how far I’ve come. On my own.
I may always be on my own… And I find that hard to say. I may not. But let’s be realistic it takes a special kind of person to take cancer on and let’s be real… If I couldn’t find that guy before when I was healthy, what’s the chance now! 😂 Especially in this new superficial, narcissistic world of swiping left or right!
I know I wouldn’t want it… If I had the choice that is.