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.

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! ✌🏻💜

When rationality ups and leaves

What happens when the rational level headed girl I used to be starts to lose her mind?
Its been a long week this week. I expect you all have been looking forward to this short working week so you can relax for the Easter holidays.

My mind has been burning over time. I’m pretty emotional this week. Not over anything in particular just the usual, the next step.

I’m starting to make plans again. I’m off to Switzerland in a few weeks, that was the first plan I made.

A mother fucking holiday.

I’ve been thinking a lot too about what happens after my next scan.

If all goes well it will be work.

I can’t seem to write what I’m feeling at the moment I feel like it’s all over the place.

Work is such a simple step to get back to. Then why does it scare the living shit out of me?

Its not the thought of going back to work. Apart from this whole shit storm that’s been my story for the last 15 months I’ve always worked.

Its the whole what do I do? I feel so fucking lost. As hard as I try to stay the same person that I used to be I’m just not. It’s impossible to be that person anymore.

I had a cough this week. Well… I convinced myself I had a cough. And I convinced myself that this cough was coming from my left side. The left side that they’ve not treated. The left lung that they decided the tumours were too small to treat with radiotherapy.

How do you keep a rational and level head? I’ve forgotten.

I will forever be this person that is a hypochondriac that thinks they are dying of cancer before anything else.

I was asked a few weeks ago if I’ve ever considered not making cancer my life.

Kind insensitive right? It’s shitty comments like that that stick with me. It’s hard for it not to. Is that how people see me now? This boring cancer story. It wasn’t meant in a malicious way or for me to take so sensitively… But how can I not? This is my life now.

My friend was explaining to me her feeling of anxiousness. I’ve never really understood anxiety having never experienced it myself. I understand the workings of it. And I’ve always respected those who have to deal with it but I’ve never really experienced it for real.

I wouldn’t say I have anxiety. (Reading this you would probably say that I do) But I don’t.
I just actually understand it now. You know that lump in your throat that you get when you feel a little emotional but you don’t want to show it? And you try to swallow to get rid of it but that doesn’t work? I’ve got that but instead of my throat it’s in my chest like right under my sternum. And it’s not a little lump it’s the size of a tennis ball I would say. It’s not always there. It just crops up when I’m making plans.

What if I have to cancel them?
What if I get sick?
What if I make people upset again?
What do I do?
How do I live my life?
Do I have a headache coz I’ve not drunk enough water today or is it something else?

It goes on and on and on.

These questions just never shut up.

Its continuously going round and round in my head. All I want is for it to SHUT. THE. FUCK. UP.

When the cancer clock keeps on ticking

Cancer…
Cancer…
Cancer…
It doesn’t get better the more you say it does it. Damn.

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.