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.
Watch this space though… The story doesn’t end here.
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.
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 🇨🇭✌💜
So I’ve brushed over this topic before but I’ve never really gone into the nitty gritty.
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.
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! ✌🏻💜
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.
I’m thankful for being out of pain. I’m thankful of eating all of my breakfast. I’m thankful that I get to choose what I want for breakfast and its not the go to foods that I can stomach like mashed potatoes, peas and gravy. I’m thankful that I’ve put on weight. I’m thankful that I can walk my dog. I’m thankful that I can focus on tasks. I’m thankful that my friends can talk to me about their problems again. I’m thankful.
The list is endless. You take for granted absolutely everything when you’re healthy.
Today I had a surprise. For once it made me think “hmmm… This isn’t all for nothing. I’m being listened to”.
My blog became a runner up in the young adult category for the 2017 I had cancer blog awards. I bet you never heard of that one before had you! Haha. Well let me tell you about it. I had cancer is a community that supports cancer fighters, survivors and caregivers.
When I first started this blog I didn’t really know what to expect from it or myself. I did wonder if I’d get bored and it would fizzle out.
So I’m proud of myself for getting this far but most of all I’m proud that I am being heard. I don’t know how far I will be a year from now but this time last year I didn’t think I’d be here writing about my experience so anything is possible.
I have a worrying and an uncertain journey ahead of me but I’m thankful for all the support and love I get from you all and for your continued interest.
This wouldn’t be possible without you guys 🙏🏻💜
I’m in this bloody lingering place of limbo again 🙄 I feel so useless. I feel forgotten.
All I’m doing is waiting until they can scan me again in a couple of months. When you’re going through treatment you feel so awful physically but you feel good (or at least I did) mentally because you know something is being done.
I’m waiting on fate to give me some luck now. It’s out of my hands. Fate has not given me much luck previously. Fate is a bitch.
My story isn’t so juicy when you’re waiting so you tend to lose a lot of interest from followers. I’m not at the start of diagnosis where it’s a shock to everyone and I’m not dying right now so there’s just no juicy gossip to pass on. I’m stagnant with my diagnosis at the minute.
I’ve taken to reading a lot of cancer stories in the newspapers lately. It’s probably because they catch you with the title “woman, 22, survives cancer against all odds” or “man survives cancer by eating lemons”. They like to draw you in with the catchy and unbelievable titles 😂 …and man alive… Am I gullible. But to be fair once the cancer train has hit you its hard to pass over these stories.
You have to go careful when reading these stories in the media. I feel like everyday I am coming across some natural remedy that will beat cancer. Some story of some person who was on deaths door and took this magical natural remedy for a period of time and boom! They’re cleared! It’s so hard not to get wrapped up in it all and believe this magical cure can work because sometimes they give you false hope. I’m not feeling hopeless at the minute but I’m feeling realistic. I believe some of these stories are true but I’m also aware on how rare they are. I’m not opposed to trying some new found hippie dippie cure if it works I would try absolutely anything to survive this. I’m very much aware of my internal ticking clock that cancer is now dominating. Tick tock, tick tock, tick tock…
I’m not going to tell you what hippie dippie remedies I’m trying because I don’t know if it’ll work and I don’t want to give others false hope. I’m also doing it for other reasons too that aren’t just related to cancer.
My body has aged. I don’t know how old my body is now but it’s certainly not the nearly 30 year old I am. It’s probably at least doubled in age. I wake up in the mornings unable to move my hands straight away. There are pains in my knuckles. It takes me a good couple of hours to loosen up in the mornings and feel like I can start the day. My knees at the end of the day ache. Like deep down in the bone hurt. Bending to sit hurts and getting up and down off the floor now means I make those old people noises I never did before. If I’m really tired they sometimes give way and I get a bit unstable with my balance.
These hippie dippie natural treatments that you hear about will never be researched further if they do work. Drug companies can’t patent a natural formula so it’s not profitable for them. It’s all to do with politics. But I’m also aware that if it did get to a serious stage where I’ve exhausted all medical treatment options I will never be offered a clinical trial. My cancer is just too rare. Clinical trials are for the “popular” cancers.
I am doing my own thing. I do my bit of research and I choose my own path. I’m not shunning medical treatment. Please don’t interpret this into something else. I’ve finished my treatment so it will not affect any medication or treatment plan. I just feel like I’m waiting on something that’s out of my hands and I want to take back control.
If I have to go back onto treatment then I will talk to my consultant or I will stop what I am doing if I am advised to. I still have my faith in my medical team. I just feel like because I’m not dying right now I’m not important to them. Which is great! It is! I’ve come to the other side that I thought I’d never reach but I’m also in no man’s land.
Its hard being left with your own thoughts. Your mind can be so torturous sometimes.
On a happier note, I went to a wedding on the weekend. My best friend of 19 years… Yes, Emily… That is correct, 19 years! Got married! I was super excited for the weekend not only for her but for me too! When she first planned her wedding I could not give any solid answer to her RSVP because I didn’t think I’d be well enough. At the start of her engagement it was hard for me to see 7 days ahead let alone 8 months! Wow… 8 months. Look how far I’ve come! 8 months ago I had just been told my cancer had gone metastatic and I went back on an immediate chemo plan.
So with all these wobbly moments where I feel lost, forgotten and unknown I just need to remember how far I’ve come. How much stronger I am physically and mentally now.
Sunshine and blue skies gets the best of us out of funky moods. I hope you all have a lovely weekend! Roll on the spring and summer! ✌🏻
Are some women just stupid? Or ignorant? With an “it’ll-never-happen-to-me” attitude.
Jo’s cervical cancer trust is doing a #smearforsmear campaign to promote the importance of gynae health. I cannot emphasise enough the importance of gynae health.
KNOW YOUR VAGINA!!!
As a beauty therapist, I can’t tell you the amount of bikini waxes I’ve done over the years. Hundreds. Maybe even thousands. You’ll make yourself look pretty but you won’t make sure your foo foo is in top notch condition?
That’s just stupid. You spend longer on my beauty couch then you actually do getting a smear test.
Well what’s the point in a pretty foo foo if you’re not gonna look after the whole of your body.
Now you may think I’m being over dramatic here when I say the whole of your body but that’s what it is. I had a gynaecological cancer but it’s now in my lungs. Chemo affects your whole body, Radiotherapy irritates your stomach, bowel, bladder. Would you rather that than 5 minutes in the doctors office?
Take it from someone who’s done a smear test. It’s simple. You go in, you drop your panties, nurse does their thing and boom. You’re done. It’s important. That’s it.
Now these days I’m a realist… You may not take my advice. And you may not care about my story and how my life has changed from cancer and that’s fine. It’s your choice. But you’re stupid if you ignore booking in for your test. It doesn’t bother me if you do it or not.
You can take the alternative instead if you ignore that reminder from the NHS or those silly little niggles that you never had before…
5+ Dr’s prodding and poking your vagina, putting fingers up your butt, operating with countless doctors and students getting a good view of you in all your glory when you’re knocked out! Yeah you might not know what they get up to and you may prefer it that way but you know more people have seen your down stairs in a week than ever before.
Case studies are done on your vagina. You’re now a student GP’s case that he talks about and learned from because you’re so “rare”.
No for me, I’m not your usual case. Not all symptoms of vaginal cancer related to me. The most obvious was the heavy bleeding. And I don’t mean just a heavy period. Big big clots the size of your palm. But I knew something wasn’t right.
So I went to my doctors. Now don’t get me wrong if something is not right you may have to fight. Don’t ever give up if you think something is not normal. December 11th was my first port of call to the doctors. January 10th was my official cancer diagnosis.
Doctors and nurses don’t care what you look like. Hairy, bald, clean, smelly, fat, thin, big or small. It’s all in their job. They signed up for it and they knew what they got themselves in for. It’s all in your head so get over it, buck up and get yourself booked in.
If there’s one thing you do today it is book in for your smear (if you’re a girl obviously, otherwise go tell a girl to do it 😉). And tell your friends to do it too. Pass the message on.
Oh also, donate blood when you can too!! I’m not asking for too much am I? 😂 Give blood!
If you fancy a read and are actually concerned about your vaginal health, check out eve appeal they’re a charity that promotes the importance of gynae health and offers support and advice to those in need ❤️
So the right lung where the bigger tumor is will be treated with radiotherapy. This will begin this week and I’ll have 12 sessions. 12 sessions seem like a piece of cake after my 36 sessions last year!
And the left lung? Well they’re just going to leave it.
Apparently chemo has worked too well. I’ve been told I shouldn’t have improved so much between the scan after chemo 3 and the scan after chemo 6. They generally don’t see any difference between the 2 scans so to find it’s shrunk again means I don’t fit into the normal cancer category… Again.
So basically the left lung doesn’t show a distinctive enough tumor. Which is great! Hooray! I’ve kinda beat cancer!
But because the left side is so small they can’t really target it with radiotherapy… So now it’s too small.
They’ve decided to just leave it to see what happens.
Hence why my mixed emotions. I’ve been conditioned so much through treatment that treatment is good, treatment is important that it seems impossible for me to see this in a good way.
I feel like they’re leaving me to walk this dangerous tightrope of life and cancer. I mean the growths to the lungs occurred within 3 months then doubled in size within a month. This is a serious cancer they are dealing with. This is my life!
I trust my consultant and the work she’s done for me but I couldn’t help but cry when she told me that she’s not going to treat the left side. And never in a million years did I think I’d be crying over the thought of not having treatment!! Maybe I shouldn’t have bitched so much about chemo! It obviously worked too well!!
A little bit cringe but thought I’d try something new 🙈