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 experience 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 🇨🇭✌💜