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!
The Uneducated Moron
You may not know this, but I was a bit of an uneducated moron about cancer before my diagnosis. I lived a healthy lifestyle – probably above the average of any normal twenty-something. So my attitude was definitely of the sort “it’ll never happen to me”.
That’s one of the reasons I decided to blog about my cancer. As sick as you may be of hearing me go on about my life with cancer, it may be useful to one person. Hey, you’re reading this, so you must have some interest in me!
So that’s all I care about, sharing my life story so that one person doesn’t need to feel so alone. If it can help prevent someone else needing to go through what I have, too, then great!
As you may have noticed, my cancer story has had a little more exposure these past few weeks. With my article released on Glamour Online, my cancer patient video for Stand Up to Cancer with YouTube Fights Back and local papers, along with my interview on BBC Oxford Radio about my Beauty Bus venture it has all been a bit chaotic! It is all for the better though, and I haven’t done anything that I haven’t agreed with.
With cancer, I have come to realise that few people actually care about it unless it has had a direct impact on them. A harsh statement you may think; reading this you may be of the minority where this isn’t true, but most people don’t care about cancer if they don’t see it. Now maybe this is protection, intentional – as a self-preservation kind of thing, or natural – as an unintentional development as humans, but generally, people go about their everyday lives not really thinking of the impact such a devastation has on a person’s life.
Hell, I have no problem with this! I used to be this very person! I didn’t really care about cancer, it didn’t affect me personally, so why should I care? I’d give to charity, I wasn’t completely heartless and I wasn’t rude towards it. I would give my £2/£3 for a slice of cake because I felt obligated to, sponsor a runner £5/£10 again because I felt I should but that’s as far as it would go. I’d be sad if I saw a kids story with cancer, that one I don’t think I’ll ever understand why they ever need to go through it… but by the change of a topic, they were forgotten.
I expected this with my cancer story, to blend into the background. My blog is just a drop in the ocean when it comes to others and their experience with cancer and I’m OK with that. As far as I’m concerned there is more than enough space for everyone to share their knowledge about it. I know how important it is to share it, not just to you the reader, but for the writer too. It is very cathartic letting it all go.
So yes, I will carry on talking about my cancer story because although some may not care about cancer, I still need to talk.
Ask Me Anything About Cancer
There is one thing that is hard to do, I have always been this way. It is hard to offend me. Some people have been cautious when asking me questions about my cancer. This is mostly through fear of me being offended by it being too much of a personal or intimate question. I have no limits though. If there is a question about my cancer that you want to know then I will answer it. It is through education that we learn and by now, we should be comfortable about talking about this subject. That’s just me, however, it doesn’t mean everyone is this way.
But Don’t Assume
I have recently found myself in a couple of situations where people have been extremely insensitive. These people are probably unaware of their actions. They are pretty minor in the grand scheme of things but pretty major when put into perspective. They are general passing comments that you take on the chin, to begin with, and you don’t really think much of it but eventually, it sits and festers. I’m pretty robust when it comes to things like this but occasionally they can set me off course. Even now thinking about it I can find myself in a heap on the floor crying over it. It is not through malice that they have caused this offence but through uneducation. It is something that I am trying to work on myself.
You may wonder why, but the first occasion I just took it, I didn’t have the quick wit to pull them up on it. 24 hours later the damage had been done, that’s all I could think about. One person’s action took the attention away from a magnificent achievement. One person may not do a lot of damage. However, you group together each one person of uneducation and that can do a significant amount of damage. My second encounter with moronic uneducation, I did better. Yes, the comment may have crumbled me but I am proud of the fact I stood up for myself. No aggression is needed to put across my point but an assumption is not necessary when my whole life is basically on the web. Through a few clicks, all the information needed is at your hands.
Educating The Uneducated Moron
I dread to think if I was ever this person… I don’t think I was, however, can you ever really be sure? Although I may have been an uneducated moron, it was more through a limitation of exposure to cancer rather than an ignorance to it. It’s OK to be uneducated through limited exposure, that’s why I’m doing this. I’d rather it be that way! However, ignorance in the sense of it being rude is unacceptable.
Did you know today is World Menopause Day? They literally make a day for everything. I know these days are a day of awareness. For those who are going through these conditions, it’s a day where those who aren’t experiencing them can stop and listen. It’s a day where you can take a health audit of your current status. People who aren’t in the know get educated. Charities and societies can create events and raise funds to help current and future people in need.
I know it’s a good thing.
However, I can’t help looking at it as a big banner that my body is a failure. I know it’s a little self-absorbed to be thinking of yourself but for crying out loud, there seems to be one day after another after another that seems to correspond to my status in life. Can I not go back to being normal, oblivious to these titled days?
I’ve never really looked at myself as a failure until cancer. A couple of months ago I had to write a few sentences on how cancer has made me feel like a failure for Marie Curie. I don’t know if they actually used what I wrote, I never heard much from it. Failure is a strong word but that’s what’s happened, my body failed.
When I told my family what I had to do they were horrified to hear that I had been asked. I guess I just take it all in my stride. I didn’t think much of it, so I had to sit and think for a bit on what to write… it’s not something I really thought much of before. Now, apparently, it is all I can think of.
I’m definitely struggling more this side of the diagnosis than ever before. Being diagnosed and having treatment seems to be the easy bit… but is that because my mind is protecting me from what I’ve been through? It’s so much easier looking back on things. It never seems so bad but it was, it was awful.
For nearly two years I’ve been dictated on where to go and what appointment to attend. As soon as treatment is over though you’re dropped.
Silence is great for the recovery period where you’re managing to get up and out. But as time passes you realise it can’t carry on. You need to pick your life back up. The trouble is, what life? You can’t go back to the one you had before, you’re not the same person. There are all these new insecurities and anxieties that were never there before.
Premature Ovarian Failure
Menopause is a funny one really. It’s not one I really know a lot about. I mean, I know the physicality of it and I’ve read all there is to know about it until I’m blue in the face but my experience of it is pretty dull. Radiotherapy and chemotherapy caused premature ovarian failure, in other words, put me into an early menopause. I experienced a few hot flushes when my treatment ended before I got an appointment for the early menopause clinic but that’s about it.
Taking HRT (Hormone Replacement Therapy), replace the ones that I no longer produce artificially. Because I take this, it means any symptoms of the menopause are gone. I take this for the rest of my life or until I’m of normal menopausal age… I guess that will be for the next 25 years. Then I get to experience the true side of the menopause, I imagine.
I’m supposed to monitor my general feelings of well-being and if I feel something is not normal or is out of sync then I can call the clinic and alter the dosage. What is normal though?
My normal may be different from your normal. I don’t think I know or have a normal anymore.
I hear quite frequently that after cancer you have a “new normal”. It’s a normal that is different from your old one and different to those around you. I hate that phrase. Nothing is normal about this and finding that “normal” seems near impossible.
On the upside, I’ve had my appointment through for my next CT scan. I’ll be glad to get that one done. My previous 3 month check up was only an X-Ray, so at least having a more in-depth scan will calm the mind some. It’ll be the first since I had my N.E.D (No evidence of disease) back in May.
The Beauty Bus is brilliant at keeping the mind busy. If I’m not careful I can find myself in a silent world where my mind is screaming at me about all the things that are wrong. I try not to focus too much on these details but some days are harder than others.
The funding for the Bus is coming along amazingly. Thank you to those who have donated, shared and spread the word about my cause. I’m incredibly lucky to have an amazing support team around me who believe in my idea.
Donations are still open so if you would like to donate or share then you can do so here
Scars are a funny thing really. They show trauma from a time in the past. They can be a badge of honour, a thing of pride or at times a point of shame.
What it always is though, is a physical remembrance of a time of pain. A time where you were hurt.
I have no physical scar from my cancer. Any damage that has been created is all internal.
My pain cannot be seen.
Does that mean that because it cannot be seen it does not exist?
To others, probably. To me, no. It is always there… hidden.
Just because it cannot be seen does not mean I am healed. My scars are very much still raw. I am still in pain. My hurt is real.
There are times where I do not live up to my blog.
This week I have not been happy and smiley.
So, I scrap this week off and start afresh. These days don’t happen often but they do still happen. I just don’t talk about them – unintentionally, I might add – I just become a bit of an introvert.
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
Let’s bring beauty on tour for those going through cancer!
The Beauty Bus – This is the next step I have planned for getting my life back on track. I understand that to some, my story may not seem so interesting now but this is where I want to make a difference to peoples’ lives who are undergoing the crap that cancer gives.
It’s fine if you are not in a position to donate but all I ask is that you share this so that I can get into a position where I can help those going through cancer and make them feel better… I’m sorry if you think I’m being massively cheeky… If I had the funding, then I totally wouldn’t be asking and I’d go out tomorrow and get it all done, but this is where cancer can put you at a massive disadvantage, aside from the obvious, it kicks you down and keeps you down financially.
To donate or to share my idea with others, please take a look at my JustGiving page!
I would absolutely love to provide a salon experience on the doorstep, without the need of me invading any personal space. I’ve explained my idea in a little more depth below in my recent vlog
Thank you for taking an interest in my quest to help others! Hopefully soon, I’ll be rolling up on my Beauty Bus near you!
Radiotherapy Tattoo Dots
You probably don’t know why this picture is here. It’s here because it shows one of my radiotherapy tattoo dots.
So, what are these dots? These are my radiotherapy alignment dots. They are little tattoo marks, permanent markers, the only external evidence I have that shows I have had cancer. These dots are used in conjunction with some laser lights to line my body up for each external radiotherapy appointment. Generally, it is the alignment that takes longer than the radiotherapy itself.
I’ve discussed previously in Baby, it’s just never gonna happen the physical effects radiotherapy had on my skin but I’ve not really told you about the process of what happens before radiotherapy begins. There’s a planning radiotherapy session which is where they measure your body, weigh you and mark you. They need to be precise and accurate, it’s important that the alignment is perfect every time because the radio-beams have to hit the tumour in the exact same spot at every radiotherapy appointment.
I have 6 of these radiotherapy tattoo dots positioned on my body. I’m literally a dot-to-dot! 4 from my first encounter with radiotherapy, two on my hips, and two down the centre of my body; on my sternum and pelvic bone. The other 2 are additions from my second bout of radiotherapy; they are on either side of my ribs lining up perfectly with the one on my sternum.
When I first got these dots I had 4, all I could think of was getting them covered up or lasered off as soon as I was finished with my treatment.
looking back I’ve come to realise I’m glad I didn’t jump to get that done. I didn’t get to that part mostly because other treatments took over or I wasn’t in the best health.
Teeny Tiny Trophies
By the time I accumulated 6, I realised they were a part of me. A part of my story and how I am here today. I’m not ashamed of these dots. They sit there like little dark freckles. They’ve seen me through a lot.
My skin falling off in chunks, they were little helpers in blasting away my tumours and they are the only physical proof of what I’ve been through. You see, I’ve been lucky in my treatment, I have no scars on my body from it. surgeries were always performed by other means instead of incisions and my chemotherapy was always administered intravenously, so I have no port scar.
These radiotherapy tattoo dots are my little trophies.
So last week, I got 6 tattoos. Real ones, to sit next to these little dots. I don’t want to cover these little heroes up any more. 1) because I actually don’t mind them but most importantly, 2) they may well be needed again in the future. These new 6 tattoos have the same theme. I got 6 bugs. They all match quite beautifully. To the unobservant eye my radiotherapy dots are probably invisible as the detail of the new tattoos take over. I don’t care, I know it’s still there and that’s all that matters. These tattoos aren’t for showing off, although I will show you a couple of them, I’d probably get done for public indecency if I went parading around showing them off willy-nilly. Tattoos aren’t for everyone, and if I’m honest, I probably wouldn’t have had them done if this was me 2 years ago. I have no regrets to getting these bugs, I’m actually pretty in love with them. I don’t have a favourite or anything like that, they are all just as equal in my story.
The next 3 months
Last week’s new additions coincided quite perfectly really as I’ve been cleared for the next three months. This No Evidence of Disease is lasting longer than I ever anticipated and I couldn’t be more relieved. I did however do something unintentionally silly the other day though… I googled.
You see, I’m starting to realise that with my life restarting my blog is probably looking a bit boring to people now, (sorry, not sorry!) So I’m trying to make topics that are a bit more useful in relation to gynae cancers and stuff. In my little research hour I discovered a little snippet that said once cancer metastases, recurrence generally happens within 2 years, or it was something along those lines. Well that’s a bit of a bugger! As far as I can say, I’m 6 months clear of it now and I’ll take it. It’s annoying living with the 3 month segments but I’ll take whatever I can, some people are not as lucky as this.
Here’s 3 of my bugs… the other 3 are a butterfly, dragonfly and a bee. Any wonkiness is purely down to the photo taker (me) they are actually perfectly aligned as the radiographer’s did a pretty accurate job measuring it all up for me.
Just a note…
The tattooist hasn’t touched the original radiotherapy tattoo dots… they have naturally bled out over time and also, it’s not really important for them to look pretty. Another one to note too is that I contacted my oncologist in regards to getting these so don’t go altering any of your own radiotherapy tattoo dots unless they know and approve!
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”!