The Bus Ride

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.

The snooze

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

 

 

The Beauty Bus

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!

Dot to Dot

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.

New Tattoo

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!

The Trucking Aftermath of Self-pity

The Recovery

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

Cancer Fatigue

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.

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 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”!

 

Cancer 101

So obviously there are no rules to cancer or the treatments that may follow. No rules. No map. No way of teaching. Nothing. And that means there is no actual way I can tell you how to deal with cancer and the treatment that comes with it. All I can do is give you an insight to the symptoms and effects I experienced with the treatment I recieved.
According to Cancer Research UK‘s website, 1 in 2 people in the UK born after 1960 will be diagnosed with some form of cancer durning their lifetime.
I have found that since starting my blog I have had a few people contact me on what to expect when they undergo chemotherapy. What to expect, how can they prepare themselves, etc. So below I have created a post on what to expect and what is good to know before treatment begins. Whether you are just curious, about to go through treatment yourself or know of someone that may find this helpful and you’re just doing some research, please be aware that this is what I discovered for myself, experiences vary and you may find you have more symptoms than what I did or if you are lucky, less! My experience is UK based under the care of the NHS with Intravenous Chemotherapy and External Radiotherapy. I’ve also had Internal Radiotherapy known as Brachytherapy but this is not discussed in this post. There are hundreds of varieties of chemotherapy and can be given in different forms. If you would like more of an overview of chemotherapy then click here. You can also find more indepth information here which may answer any questions you may have. The Chemotherapy drugs I have experienced are Paclitaxel, Carboplatin and Cisplatin.
Feel free to message me if I have missed something or if you want me to go into more depth in certain areas! You can also find at the bottom of this page some relavent links to previous posts I have created when undergoing treatment. If you find you want more, then I have set up an easier system where you can now look back on older posts too. Take a look under the archive, it is linked in the drop down menu above, under the heading “blog” or if you prefer click here. If you are that dedicated then Kudos! I’m grateful that I have been of some use!

 

OK, first things first, don’t believe everything you’ve heard about chemo. Some chemo’s you don’t lose your hair. My first chemo actually made me feel better and function for a few days. If you are sick or feel nauseous constantly then tell the nursing team. There’s no need to feel like that any more. They have hundreds of varieties of anti-sickness. Pills, powders, dissolvables the lot.

If you haven’t started chemo yet and have time, book a dentists appointment for a check up. I would still do it even if you’ve been there in the last couple of months. It keeps them in the loop of your condition but also they may do any work before chemo begins if it needs it. Dentist’s don’t like to touch you, unless they absolutely have to, when you’re undergoing treatment.

If it’s a long infusion, as in you’re in for the day, take a supply. Lunch will be provided for the person going through treatment but not for any others who join you for company. Take a blanket to keep warm, then you don’t have to worry about taking jumpers on and off before being hooked up to the IV. Also I found I was always on the colder side as sometimes the chemo going into me was on the cool side and that does make you cold fast.

Take snacks. I called it my junk food treat bag. Whatever you want take it. Take plenty. Eat it whenever you want too. It’s for you and the person going with you because they will need it as much as you.

Books, puzzles, TV series, movies, music, if you have the option to download and bring it with you, do it. But don’t be surprised if you don’t have the function or attention span to use any of it. I pretty much slept the whole time. But it’s there for your chemo buddy.

Don’t be proud, have a chemo buddy!! It’s easier to be with someone then on your own.

Take warm socks. If they have a grip to the base of them then you don’t have to worry about the faff of taking your shoes on and off.

If you’re in for a long infusion, and you can, ask for a port for your chemo. This is something I discovered recently and wished I asked for it for myself! They don’t tend to like to do it unless they have to, or you’re further into your chemo program. But it’s easier and kinder to you when administering the drugs. You then won’t have to be jabbed everytime to get a cannula in and worry about collapsed veins. Chemo can be harsh on the veins and can toughen them if used too often which can make it sore for you. If you don’t have a port then make sure you rotate arms each time. With a port, you just can’t get it wet but if I’m right in thinking, there’s waterproof sheaths to put over them that the nurses can supply you with.

If you take any non-prescriptive supplements talk to your oncology team to see if its OK to still take them. Some supplements can interfere with the chemo.

Not all chemos make you lose your hair. My first chemo I half lost it. It just thinned a lot. Second chemo I lost it all. Don’t be surprised if you find you have patches of baldness. First lot of chemo made me look like I had a monk cut! Bald on top but hair around the sides. Alternatively, your hair can go all in one go! Second lot of chemo I knew I was gonna lose it all in one go, I could feel it! No time for clippering, no preperation.

There are options to prevent hair loss like the cold cap. That’s personal if you want to use it. Depends on who you talk to on how it feels. Some don’t like it, some feel nothing of it. It basically cools the head down to keep the hair follicles cool to prevent the chemo damaging the hair follicle and prevent hair loss. Using a cold cap doesn’t always work though! My second chemo was strong and a cold cap would never have prevented me from losing my hair.

If you lose hair and want a wig you will have to pay. However if you are in hospital and have chemo when admitted (the day unit is not included) then you can get a prescription and it will be free.

All prescriptions are now free. Make sure you fill in a medical exemption certificate.

Car parking should be free when under chemo and radiotherapy… Just check with the hospital you attend…  I hope it’s not just available at my hospital!!

Eat what you want whenever you want. As my chemo was in 3 week cycles I found I didn’t eat a lot for the first week then a bit more by the second then a lot on the third to build me up for the chemo. Eat junk but also eat healthy… If you can! You may find textures and flavours change. I lost my taste buds the first week of my chemo cycle so strong flavours worked best for me. Meats and fats made me feel sick and were the kickstarter to queasiness if I ate them. By the end of chemo, once it had built up in my body the things that I found in the first week of the cycle were staying with me. So eat whatever you can and what ever you damn well please!!!

Look after your hands and feet. Neuropathy (numbness) is common in these areas during and after chemo. I still have neuropathy in the balls of my feet and I’m 7 months post chemo. It may come back but it may not. Keeping active can help. A brief short walk is good enough.

If you can, get out everyday. Even if its for 5 minutes. But be sensible. Don’t go in the rain and get wet. Avoid anyone with a cold or even a sniffle.

Listen to your body. You’re gonna feel tired. Sleep! Don’t over do it and compare it to what you used to be able to do.

Chemo brain is a thing. You may experience forgetfulness or find it hard to function or even pay attention. For a few days after chemo I zoned out on everything. I couldn’t pay attention to anything. It’s common to find you’re forgetful for weeks/months after it has all finished.

Keep your mouth healthy. If you already suffer from mouth ulcers then talk to your team. They may be able to suggest a good mouth wash that will help. Chemo can give you bad mouth ulcers. This is not something I found I suffered with myself so my experience is limited here.

Keep well moisturised. Chemo will make your skin dry and it will prevent any soreness from occurring. Don’t use perfumed moisturisers. If you are having radiotherapy too only use what they recommend. Cetraben or any similar brands that can come on prescription are fine. DON’T USE ANY OILS!!! AT ALL!!! Aveeno is a good moisturiser brand that you can pick up anywhere and can be still used if you’re undergoing radiotherapy too.

Discolouration or damage can occur to the nails. Ridges, lines, bruising or even the nail itself can fall off. Don’t be surprised if this happens. This didn’t happen to me but I found mine went very brittle. As a beauty therapist, I have had clients who have been advised by the nursing staff themselves to get their nails done. With Gels or normal nail paint is fine, but not Acrylics!! You won’t have the strength there if they’re on the weaker side, if you go for normal nail paint as to UV Gels. They advise this for one, so you don’t see the discolouration to the nail and two, so you have a bit of strength for the nail which may preserve them. Go for the darker shades if you do happen to have discolouration. You may find that still having regular manicures may not preserve the nail or you may find they drop off after treatment is complete. It takes a good 6 months for fingernails to grow from the base to the top, 12 months for toe nails, so be patient.

You are probably going find everyone has an opinion on what you should try to do to beat cancer. Juicing, going organic, turmuric, cannabis oil, aloe vera. All of these I’ve been told to try by others (who have not had cancer). Take it with a pinch of salt. Whatever you do though DO NOT TRY ANYTHING WITHOUT TALKING TO YOUR ONCOLOGY TEAM. A lot of these things can interfere with chemo and can actually compromise you. Although you’ve probably heard “chemo is a poision” there’s a reason it’s the number 1 go to drug still. Most of these “remedies” are still very much unknown and media stories don’t help. If you dig deeper you’ll find they’ve actually had chemo at some point or surgery along the way.

If you have radiotherapy in the stomach region, be careful of heartburn. The second lot of radiotherapy I had gave me odd bout’s of sickness. I found avoiding oily foods helped. Take anti-sickness if you find it but also tell your doctor. They may put you on a stomach settler to help and prevent. My dad also read of a story of someone who had radiotherapy near his head. He had a mouthful of metal filings and radiotherapy heated these up and gave him bad mouth sores! Again talk to your Radiotherapy team if you have the old style metal filings because they may be able to change them for the more modern filings before treatment begins. It could be a case that it doesnt matter, if your radiotherapy sessions are short and few then it may not be a problem. Each radiotherapy program is different. My first lot of radiotherapy was 15 minutes each appointment for 36 sessions as where my second lot of radiotherapy was no more than 3 minutes and I had 12 sessions there.

Same goes, if in chemo or radiotherapy you get an upset stomach, there are pills to help.

Some anti-sickness pills can be steroids or they may provide you with steroids before your chemo infusion. This can cause the usual steroid symptoms. Added weight, restless leg syndrome, a boost in energy for periods of time… usually at inapropriate times like 3am!

Phew… Ok, I think that is everything that I can think of. If I remember anything else then I’ll add it on. You can also check out some of my older posts that I created when going through treatment. Take a look back on those, if they don’t help then feel free to drop me a message! There are loads of different ways cancer can be treated, so please dont be alarmed if I haven’t talked about any experiences you have had or can’t find the information you are looking for. For any other treatments then please take a look here.

A life of crackers and coke

Hair today, gone tomorrow

When in doubt just add hairspray!

When you become a real life zombie

Chemo 21 and counting… 

Chemo: it’s not me, it’s you!

Baby, it’s just never gonna happen

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!

A point I thought I’d never get to

If there’s one vlog you need to watch it’s this one below.
I can’t tell you how shocked I am by this. Never in my wildest dreams did I ever think I’d get to this point.

Watch this space though… The story doesn’t end here.

Sometimes bad shit happens

Sorry, I’ve been slacking on the blog posts of late. You’re probably wondering what’s been going on! Well, in all honestly I can say not a lot. And its good!
And I apologise too for the title of this post. It is the only title I could think of where it put my point across well. If you didn’t realise it already then my language is occasionally fruity but it’s honest.

I did manage to finally go away. I took a break to Switzerland for a few days. It’s nice to finally have a plan that sticks!

Today is a pretty important day for me. It’s scan day. I’ll have my CT scan with contrast to see what’s left… Or worst case, if there’s more. I’m not really thinking about it to be honest. It’s like Pandora’s box if I flip that lid. I’ll get round to the worry and sleepless nights on the lead up to results day. There’s a word in the cancer community that I hear a fair bit.

Scanxiety.

I fucking hate that word.

The anxiety of a scan.

It can be a range of things. Anxiety of the scan itself, the preparation of it or just the results. If you’re going through this yourself you’re guaranteed to experience scanxiety at some point. You’re a bloody tough nut if you don’t!

For me, the scan, the needles, the waiting, it’s fine. It’s a process. I can quite easily shut my emotions off for this part and just go with it. There’s nothing more I can do so I just kick back and let the medical staff do their work. I’m just another number in their day, and that’s the sad part. How many people they see each day doing pretty much the same thing.

You know, if there’s one thing I’ve learnt from all this its how to get a good game face. And I don’t mean for the treatment itself or the cancer. Some days you do have to fake it to get by but I don’t mean that.

I’m different these days. Aside from the obvious why I’m different… I mean it in ordinary scenarios in life. And I find that fucking annoying.

But people don’t realise I’m different because I still act the same, unless I talk to them about it. It’s all about my game face. I act the same but inside my world is crumbling.

You’re probably thinking that these scenarios are extreme or that maybe I should avoid putting myself in these situations. That’s probably what I would have said before this because I wouldn’t have understood. But I can’t. Sometimes they just creep up on you like “ah ah ah! Don’t get too comfortable with life! I’m just lurking round the corner to screw your life up again!”

A lot of my internal freak outs are to do with family and death. I know… Morbid.

I’ve always been rational but now I’m thinking of situations where something bad is going to happen or if its a real internal meltdown someone’s going to die.

You’re probably worried about my mental health right now. Honestly it’s fine. I talk about this to my close ones. They know about my lockdowns. They probably don’t realise how often I have to do it but they can’t hold my hand all the time. As I said… It’s a process and something I have to deal with in my new life. I don’t need a therapist as much as you may disagree with me.

It just pisses me off that I’m now thinking of shit I’ve never had to think of before. I could probably resolve this a lot quicker by going and talking to my doctor but I don’t need another pill to pop. It’s intruding my life but it’s not stopping me from living it.

It’s crazy how your mind can fuck you up at times… I actually thought as I stepped on that plane to Switzerland: this plane is going to crash. Not: finally, I’m going on holiday! I’ve never been worried of crashing planes before. That pisses me off. It tarnishes all exciting experiences for me now. I hope one day to get to a comfortable place where disaster is not the first thing I think of.

I guess my worries are because I’ve had cancer doesn’t mean that I’m immune to other bad situations occurring. Bad things happen in life and there is shit I can do to stop it.

Fucking scanxiety… Yeah that’s not all I’ve got!

A few from Switzerland 🇨🇭✌💜

Baby, it’s just never gonna happen

I really wanted my next post to be a vlog and I’ve been wracking my brains for days on end about what my next topic should be.
Obviously this is not a vlog. On this topic, I needed to be clear and concise and I can’t do that without thinking about what I’m gonna say and how it needs to be worded.

So I’ve brushed over this topic before but I’ve never really gone into the nitty gritty.

Infertility.

I’m infertile. My eggs are naff. They’re non-existent. There will be no babies.

This isn’t because of my cancer. Vaginal cancer hasn’t made me infertile and it’s not fucked me up down there. I function normally… In case you’re wondering 😉

Radiotherapy made me infertile. As my radiotherapy was directed in the pelvic region it didn’t just target my tumour. Radio beams hit my womb, ovaries, intestines, colon, stomach, liver, kidneys, the lot. For those of you that have never experienced radiotherapy let me just explain the effects as best I can… It burns you. After treatment you generally have a red mark where its been targeting. Or sometimes your skin peels like you’ve been sunburned. It can blister, swell, redden, peel or all of the above.

With me, by the end of my treatment from the tops of my thighs to my lower ribs front and back my skin changed colour. I went from a fair skin, that tans slightly in the sun but burns easily, to a skin that looked like it’s spent 20 days in the Sahara slicked up with oil. Without sounding racist my skin colour was a different ethnicity.

So with that on the outside, its no wonder it damaged my ovaries. So this probably brings you to the question what we’re my fertility options? There were none.

From the day I was diagnosed, to the day of treatment beginning, there was 3 days. I had a very aggressive tumour. It grew rapidly and with the size of it already (10 cm), they couldn’t risk any more time, in case it spread. It did, but they didn’t know that at the time and they hoped it wouldn’t. The option of harvesting any of my eggs for future IVF treatment was never on the table. It would have meant that I would have to be on a selection of hormone drugs to up my ante for egg collection. Not only that, but to retrieve said eggs it would also mean an operation and the tumour was in the way of the route they would take to collect my eggs.

At the time of being told this I didn’t care of the situation. When you’re that sick all you want is to get better. I never processed this part of treatment. I never dealt with it. I just thought logically and got on with what needed to be done.

After radiotherapy, brachytherapy (an internal form of radiotherapy – they target the tumour directly with radio beams) and chemotherapy I was then under the care of the early menopause clinic.

You can only be officially declared menopause free when you’ve had no period for over 12 months. However I still needed to see them to see what function I had left. A simple blood test works for this to see what your FSH (follicle stimulating hormone) level is. This is the hormone that helps release the egg. My FSH was 84. I remember saying to my doctor “that’s good then?”… Umm… No. On average, it should be between 4 and 20. At 84 it means my body is trying to kick the ovaries into action. So with this, they knew that’s it. It’s HRT (hormone replacement therapy), artificial hormones to replace what my body can no longer produce.

If I didn’t take this? My body would be too screwed when I get old. Osteoporosis, brittle bones, muscle deterioration, heart disease, strokes, the list goes on. I’ve got enough to deal with already don’t I?! So I take it.

Hey, fun fact: did you know that although I’m on HRT I can still have a period if I wanted to! Not a real period, but apparently, some women who go through the menopause early feel they’ve lost a bit of their womanhood. Or naturally your body still bleeds monthly. HRT is expansive like the contraceptive pill. Actually, some use the contraceptive pill as their hormone replacement. Look-wise there’s no difference in the appearance of the pills and the packet they come in. For me, I didn’t see the use of having a period if it wasn’t doing anything. That’s one nuisance I’m glad to be rid of!

During this consultation with my early menopause doctor she asked if I had a sister. Yes, I do, I said. She smiled and said good. She explained that in the future she could be an egg donor for me. I shot that down immediately. I love my sister, don’t get me wrong but that is just crossing too many lines for me personally. Until recently I realised she asked this because the NHS will not fund egg donation. I would have to find my own donor or fund it myself… This is about £5000+

I’ve always had strong opinions on where I stand with such tricky areas like IVF. I just wouldn’t do it personally. I couldn’t put myself through that emotional trauma. I have nothing against IVF or IVF babies I just don’t want it for myself. So it’s never really been an option for me. I never sat down and considered it.

I’m very much a practical thinker in life. And being this way I think has helped me considerably when I’ve had to deal with such emotional situations like this. Don’t get me wrong, I am deep down to my core devastated that I can’t have my very own baby. And it hurts so bad some days when social media is covered with friends babies or pregnancies but that’s OK. I have my cry and I move on. I deal with it.

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Fertility is such a hairy topic for those who go through problems, have IVF or just plainly can’t have babies.

You can’t talk to someone who’s had babies. They don’t get it. They have theirs. And you can’t talk to those who don’t have babies but still can, because they can’t relate either. My friends and family know my situation and they let me talk when I need or want to. They help. But things move on, the feeling of sadness goes at the end of the day, it’s not a topic that they will always be thinking of.

Friends please don’t stop the social media posts if you are reading this! I’m not hating on you. It’s just some days are harder than others and it’s issues I have to deal with not you.

So you may think, but hang on what about fostering or adoption? That’s a good route. And yes, I would agree. It was my option this time last year. But since then my cancer has gone metastatic when it gets to the stage 4 region (did you know I had to Google that bit? I’ve never officially been told its stage 4) you’ll never be cured from it. You have to constantly deal with the thought of it still lingering. It will come back.

I can’t put a kid through such an unstable future. You may not agree with my reasoning but this is the way my life is.

So this is the way it is. My kidless future.

It’s a very different perspective when that option is stolen from you and not a choice you’ve made yourself.

If you have any questions or I’ve not been clear on anything please feel free to message. I’m very open on my infertility and treatment.

Also, if you find you are like me, and have gone through the menopause early, then there is a great charity that can help with people who can relate. The Daisy Network

Kudos if you have got this far! I know it’s a long post! ✌🏻💜