Happy NEDiversary to me!

It’s been nearly a year since I last decided to do a blog post. I didn’t intend for it to be this long of a break but there’s no doubt about it, I needed a break away from it all.

Last year was a very unhealthy year for me. Not physically but very much so mentally. I think I spent so much of my cancer time in denial that it was bound to catch up with me. I got to a point where I was just sick to death with everything to do with cancer.

In the beginning, I was so keen to use my story to help others that I wasn’t really thinking of the amount I was taking on. I volunteered with charities and connected with so many within the cancer community that eventually it became a little overwhelming. My mood just plummeted knowing that I couldn’t do everything and that inevitably I was going to have to let people down. The beauty bus has been an idea that I’ve wanted to execute for so long, it just got lost under everything else.

By scaling back and concentrating on me for a bit I quickly brought things back on track. It hasn’t been a straight road back. I tried counselling for a bit, unsuccessfully. Medication – it just didn’t feel right for me. But with a lot of time and kindness to myself I found things just settled back into a good routine for me.

I’m sure you’re expecting this post to hold some mega news of some sort but that really isn’t the case. Things have been positively average of late. I couldn’t really of asked for a better outcome. Once you’ve danced with cancer and all its treatments it is very rare that you find yourself on the other side. And when I say the other side I mean healthy.

I was extremely fortunate in the fact that before lockdown even became a whisper I had my half yearly CT scan. I was so fortunate to get that in. By the following week my face to face appointment with my oncologist became a phonecall.

My anxiety had definitely increased in the lead up to lockdown. I was terrified of catching the virus mainly because I wasn’t sure if I would be more susceptible to it because my lungs are compromised.

Thankfully, I didn’t have to wait long. The first Monday of lockdown was my telephone appointment, my scan was clear.
It’s unknown how the virus would affect me if I caught it, but they’re happy enough to class me as an “average healthy person”. At the end of the day, what more could I ask for?

Today is actually a day for celebration for me. It is my 2 year NEDiversary. A made up word by me. Most people seem to commemorate their cancerversary – the anniversary of the day they were diagnosed with cancer, but lately I’ve thought that one as being a bit weird. I don’t like remembering the day I was diagnosed. It was a shit time. I had been pushed from pillar to post of various appointments with no-one believing how serious my illness was. By the time they did stop and listen to me it was too bloody late and had progressed so far.

So now I celebrate the day I got declared No Evidence of Disease (NED). It may seem like a silly achievement for some but for me it means everything. It means life! It’s 2 years that even my oncologist never thought I’d have. It’s 2 years I never thought I’d have.

My aim now is to get to 5 years of No Evidence of Disease. Once I get that far then I can breathe a little easier.
5 years free of any form of cancer or treatment generally means you’re “in the clear” I’m not sure really if I’m ever going to be in the clear from cancer but it will feel damn good to shit on the crap stats that they give me.
Regardless of the shit stats I have, the way I see it, I wasn’t expected to survive 2 years and I have. It’s equally possible for me to survive way more.

I make my own stats now.

With my focus back where it belongs on my beauty bus, I’ve managed to progress so much more with the interior. If it wasn’t for our current situation I would most likely be up and running as a business. Unfortunately, due to the lockdown though, it means the final touches to the beauty bus aren’t quite complete. I’m so close to being finished and I’m amazed with how far I’ve come with it.

The wheel arches need finishing but I’m still playing around with what I’ll do with them.
I was initially hoping the double doors could have been a flower wall but unfortunately my budget wouldn’t allow it to go that far. The archway however still creates a lovely image without it looking like your usual van double doors.
I’ve created a “feature window” opposite the real window with the hope of it being less claustrophobic and for it to create a relaxing space with the emphasis of being somewhere different
A client chair needs to be added to the other side of the table. The table can be collapsed and stored in the seat box when it’s not needed without compromising on storage. I’ve also completed the window with a trim to finish up any untidy edges but it’s not seen on this photo.
It’s all about details!

Our current climate may mean that I will have to delay the launch of the bus. However, the fact that I am a one to one salon may work in my favour. It’s difficult to know how well it will work for me. I’m sure everyone is feeling the same whether it be as an owner of a business or an employee.

I really thought that I would struggle with the lockdown. It’s very reminiscent of my chemo days. I didn’t really venture out much then, there is this agonising fear that you’ll pick up some bug as your immune system is so shot but I guess because my immune system is now that of a healthy persons, my fears are not so overwhelming. At least this time I can enjoy some time out from routine.

All of it is progress at the end of the day. Progress to a normal life. I’m sure there will still be struggles here and there that will creep up on me and consume me for a bit but with any luck they will become less and less.

I’m incredibly grateful that I am still here to tell my tale.

Cheers to you for still being here with me after all this time and cheers to being 2 years free! 🥂

Today was a day for some fun in the sun 😎

Lost Focus


So this is a bit if a distorted post. I should have posted it weeks ago but my focus at the moment is very off. I’ve kind of titled sections as it comes so I’m sorry if it doesn’t flow very well but that’s the way my brain seems to be working of late! The first part was written back in April and the last bit was completed a few days ago. It’s the longest post I’ve mulled over to date! 😂 I just couldn’t seem to find my chosen topic so pretty much used it all. I don’t normally write like this but I guess its the easiest way to show you the jumbled mess I have to deal with sometimes.

Anyway, apologies in the delay. There has been a lot going on… cancer and non-cancer!

The forgotten – 30.4.19

There is something I’ve discovered during all this cancer crap that I never really considered but it has always been there beneath the surface of it all.

There is this fear of being forgotten.

Cancer invades every aspect of your life that there is no doubt about it, it changes you. The friends you have either have to be very understanding and have compassion to these changes… which to be fair everyone is at the beginning! Or they find that this new life of yours is too much and you find they’ll distance themselves from you. They become quiet and it all just slowly drops off.

You try so hard to be the person you used to be but there gets to a point where it is exhausting. You’re never going to be that person again and you just have to accept it.

It’s a whole new world, this side of cancer. You look well. You look normal. Your hospital appointments become few and far between and it almost becomes a new norm; out of sight, out of mind.

I’m well enough to re-join society but not sick enough to be part of this cancer community I have been for the past two and a half years.

I’m extremely thankful to be in the position to re-join society but there’s this whole new set of barriers that I never realised existed before.

For nearly 2 years I’ve been claiming benefits. Not anything substantial. As I moved back with my parents it’s just enough for daily living. Over time, you go through stringent measures to make sure you’re still eligible for what they pay you. Sick notes from doctors, the surrender of all bank accounts so they can review your accounts to make sure you’re not hiding anything, and face to face meetings where they ask you numerous questions about a normal day in your life, analyse all current medication. Everything about it is incredibly invasive. You feel like you’re being judged when in reality none of this has been by choice.

I don’t dispute any of their measures… it’s a system I have to comply with.

Unfortunately, my latest assessment meant that one of my benefits were cut. I don’t dispute this either. However, it has just made putting my life back on track harder. As it has meant over a 50% drop in what I was getting. It’s fine, it will (hopefully) only be temporary. At least until I get my beauty bus up and running but it’s hard to keep positive about it when you know that the reason it has been cut is because someone previously (or currently) is abusing it. Claiming it when they shouldn’t.

I am happy to work. And I am! I’m back working a few days each week. It is no where near enough to make up for what I’ve lost but it’s a start. Fatigue is the major halt to me increasing my hours.

I’ve discovered something that I never really thought much about before. A lot of products on the beauty market use quotes like “fights fatigue!” and I hate it. They equate fatigue with tired. Fatigue is nothing in comparison to tiredness. Tiredness can be fixed with a nap. Fatigue is a lot stronger. It can last for several days and I find it effects my whole body and mind. It can also pop up for no reason!

Anyway, back to my latest dilemma, the loss of my latest benefit occurred because I’m pretty sure it’s impossible to claim benefits for fatigue. Hence why I don’t dispute their latest decision. It sounds ridiculous even to me! There’s just this massive gap that I fall in that I never realised existed before all of this and I find it kind of unfair.

The work I am managing to do all helps with building my stamina and strength back up. But it is why I came to the decision of doing the Beauty Bus. Working for myself will be a lot easier to navigate. I can work the hours that suit me and if I find I have harder days then I can schedule days off to recover.

The other side of cancer

You may find it strange and hard to understand when I tell you that I actually find life harder this side of my diagnosis then when I was in active treatment. It seems you get to a point where peoples tolerance to your new way of life gets a bit much. I find myself extremely lucky in the fact that my side effects after treatment are fairly minimal. There was talk at one point that if the treatment I was first put on didn’t work I would have had a full bladder and bowel removal along with a full hysterectomy.

As life-changing cancer has been to me it could have been a hell of a lot worse and I definitely think it would have severely impacted my mental health.  So although my current side effects from it all have been minimal they are still there, pretty much daily. Just because these side effects aren’t often spoken of does not mean they aren’t there. I’m pretty sure people look at me now and think there is nothing wrong, and I shouldn’t have anything wrong with me any more. I don’t think I will ever be able to put across clearly to anyone how drastically my body has changed because of cancer and its treatment but that’s ok.

I’m ok with my new way of life. I actually think I’m a lot more confident in myself than I ever was before. I feel a lot happier in life. Hard to see, you may think, but I’ve said it before, I’m a half glass full kind of girl.

The Titles – 17.05.19

A lot of titles come after a cancer diagnosis. Some of them are obvious, and others can creep up on you without you realising them.

Depression

Anxiety

PTSD

Panic attacks

All of the above I will tell you I’ve never had. And that will be a lie. Why do I lie to you? Because, yes, at some point I’ve probably experienced it but it’s hard to admit. Not because I am ashamed, far from it. I’m sure at some point most people have experienced at least one of those from the list. However, a lot of these terms get thrown around. There are varying grades to all of them. Just because I’ve had days of parts of them doesn’t mean I can’t handle it. Its all part and process of it all. I deal with it, I talk about it, I move on.

It’s common to experience these things after a cancer diagnosis but I know it will be short lived. I’ve found this last year hard. There has been a lot of processing of what’s happened. A lot of the time, when you’re in treatment, you get told things that will happen and you take it on board and file it away to the back of your mind. There is a lot that goes on and you just focus on the now and not all the shit that is falling apart around you. Well I know I did, anyway.

I get my results Monday from my latest CT scan. I always end up on a massive downer on the lead up to the results, I feel like I’m constantly balancing on a knife-edge. I’m so close to everything around me falling apart again. There is nothing anyone can do to help me. It’s hard knowing I’m having to do this by myself again. I know I should be grateful for where I am now. Life could have been so much worse, so much harder.

The truth is it doesn’t matter what the results are. Everyone is waiting for me to tell them that the “good” news continues. And the usual good wishes and cheers will follow suit once I tell them (if it goes that way) but it’s never good news to me. It’s postponed news. I don’t ever want to get bad news again. The bad news; being that it returns. But at least with the bad news, I know where I stand. 

Back on the other side… maybe – 12.6.19

So this is the now. As I said at the start, the above was all written out a few weeks ago. Reading back on it I feel like I spoke too soon!! It doesn’t flow as nicely as some of my other posts as I wrote parts of it at various stages. This has been the longest working post I’ve ever done. I’ve found it hard to focus on projects of late… at times I feel like I’m flapping around in a panic not really knowing what to do, wasting time worrying and not really achieving anything!

So my latest CT scan results came in and it wasn’t the best of news. There’s shadowing on my right lung which looks like new scarring but because the cancer can be so aggressive, my oncologist has requested for me to have a PET scan. This isn’t usually thrown about. I have only ever had 2 PET scans before, one just before my diagnosis and then again when it went to the lungs. It’s used to determine if the cancer has spread anywhere else.

You would think with this news I’d be on a massive downer but I’m not. It’s like I’ve said before, I know where I stand when I’m in active treatment. I feel good in myself so I know I’m not on the edge of death, I actually feel the best I’ve been in a long time! I am probably in a better position to handle treatment then I’ve ever been. So I’m just going to use this time to prepare myself for the worst. Get my fitness up, keep my weight steady, I’ll do everything I can to make sure I’m in a good position. Mentally and physically. It probably all sounds a bit like denial if I read back on this post in a few months but oh well, denial worked really well for me before!

I think by now I’ve seen all sides of cancer and its diagnosis. This time round I can be a bit clearer on what I’d like. I’m not bumbling around in a minefield I have no idea how to navigate.

If I have to go on chemo then I’d like to keep my hair this time. I’m in love with my pink curls! You may think I’m being a bit narcissistic but I don’t care! I deserve to keep my hair if I want! I worry about how my hands and feet will cope with chemo if it goes that far… There is still have numbness in my feet from the last lot of chemo I was on and my last chemo was 19 months ago!

There’s a lot they can do these days to prevent further problems and you may well think I’m worrying over something that may well never happen but I’ll tell you this: you can’t tell me not to worry or advise me on what I should do unless you have been in this position… even then I may just challenge you 😉 not everyone has their shit together. It really varies day to day on how I feel. I feel sorry for my close ones because they’re the ones who are really navigating a minefield with my mood. Some comments can go over my head and other really sit and niggle. Nothing is ever said maliciously but that’s the way of a cancer life! Some days you’re up and some days you’re down. It’s a real mental torture.

Today – 20.6.19

So finally, for a true update of today. I’m finding the menial tasks of life hard. I’m still waiting on a date for my PET scan… They can call you up last minute to arrange a date. That I find incredibly annoying. I was told when I got my No Evidence of Disease, over 12 months ago, to go get on with my life. SO that is what I did. But now that I’m on the brink of returning to the full-on cancer life they expect you to drop everything and take whatever appointment is free. That all fine and well when you’re in treatment and you basically have no life outside of the hospital but its not realistic. I have a life now. I kind of resent that they think I’ll just jump and take whatever appointment they can give.

I’m kind of in this angry stage at the moment. I’m pissed that I’ve been left waiting. Again. I’m pissed that I may have to go back on to treatment, I’m pissed that I have to wait 6 fucking weeks for the next available PET scan, I’m pissed that 2 months will have gone between the not sure scan and a clearer scan. And finally, I’m pissed that I am having it fake at life all again in the mean time. I am generally pissed about everything.

But hey, exactly a month on Saturday, I will find out my fate… So I’ve just got to wait… And fake it.

Scars

Scars are a funny thing really. They show trauma from a time in the past. They can be a badge of honour, a thing of pride or at times a point of shame.

What it always is though, is a physical remembrance of a time of pain. A time where you were hurt.

I have no physical scar from my cancer. Any damage that has been created is all internal.

My pain cannot be seen.

Does that mean that because it cannot be seen it does not exist?

To others, probably. To me, no. It is always there… hidden.

Just because it cannot be seen does not mean I am healed. My scars are very much still raw. I am still in pain. My hurt is real.

There are times where I do not live up to my blog.

This week I have not been happy and smiley.

So, I scrap this week off and start afresh. These days don’t happen often but they do still happen. I just don’t talk about them – unintentionally, I might add – I just become a bit of an introvert.

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”!

 

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!

The happy pessimist

I got some good news for once this week. Chemo is working! My scan from last week has shown an excellent response. The chemo has reduced the size of the tumors and one is barely visible. With this news it will mean that I will continue with the rest of my planned chemotherapy treatments.

I should be happy, right?

And I’m pleased. I am. But I can’t exactly say I’m over the moon, bouncing from room to room, can’t stop smiling happy. And why you ask?

Because this isn’t the end.

Yes, it’s a good result. But how long for?

I told you last time, after the devastating results from my 3 month post treatment scan it’ll shit on any other happy news in the future. And it really has.

I’m pleased. I am. And I’m happy for my family and friends that they’re finally hearing something good… But it is definitely shadowed by the fact that this isn’t it. Even if it clears up after all of the chemotherapy and whatever treatment follows after, it won’t be the end.

It will most likely come back. It might not be straight away. It could be 5 months, a year, 5 years, 10 years or more but it will at some point return.

Until they figure out a way to completely eradicate it from my lymph or blood… Wherever it is travelling from, its not over.

I’m OK with this. I’d rather it wasn’t this way but I’ve accepted my fate in life. I’m still positive about my diagnosis. Don’t misconceive what I am saying. Just because the news before shat on every other bit of goodness now or in the future, I am still positive about my treatment. I feel good in myself and I won’t let that stop me from living how I want to live.

Its just… I don’t know… The big fat elephant in the room that’s staring me in the face is still there. So I’m happy but I feel like I can’t truly be 100% happy because before I know it the rug will be pulled from beneath my feet again and I’ll be back to square one. And it’ll crush me.

But worst of all, it’ll crush the people I love.

I hate that this now makes me look at the other side of life. The more pessimistic side… That’s not me. But I have no choice. I have to be realistic.

So this week I am happy. But probably not as happy as I would have been this time last year had I received good news. Because although I am happy, any big fat sunny happiness I have now gets shadowed by the dark and ugly side of cancer. And forever will be no matter how small it may become in the future years… It’ll always be there in the background waiting to pop back up and ruin everything all over again.

On another note, apparently I have shingles! 🙄 I’m an anomaly again as I don’t have the “normal” symptoms. Just a rash on my back, other than that I feel pretty normal… Considering.

It shouldn’t interfere with my chemo on Friday thank goodness but bloody hell… Can’t catch a break at the minute! 😂

Hair today, gone tomorrow

It’s been a good week this week. I mean a really good week. This is what I was hoping for going through chemo. I’d have my bad days but I’d also have my really good days where I feel normal again.

Its funny, I look at myself in the mirror and when it’s like now, a good day, I think this doesn’t look like a face of cancer. Unless you know me and what I’m going through you wouldn’t know what I’m battling. I guess it’s a good thing because I have a respite from having cancer dominate my life. I mean on my good days it’s still there lingering in the background. It’s the first thing people ask if I haven’t seen them in a while and I still have to take my daily dose if medication that I never had to do before. But I’m not that sickly person where it’s obvious what’s going on.

Nobody sees me on my bad days. And I mean nobody. The only people who have seen how horrendous my bad days are are my mum, dad and sister. You might think it strange because don’t get me wrong,  I have a huge support network that would be there for me at a drop of a hat if I asked them to sit with me,  but I just couldn’t do that. I’m not sure if it’s to protect them or me. There’s a sort of vulnerability being that exposed to someone. They’ll be seeing me at my absolute worst. Maybe I’m being completely selfish by doing this but I just don’t think I could handle it if they treated me differently. I don’t think my absolute closest people would intentionally do that but I don’t want to be treated like I’m fragile. And I don’t want them to carry around that burden of seeing me like that. It’s tough. It’s not pretty. And when it’s bad it’s bad but on the upside when it’s good it’s really good.

I’ve had a lot of conversations recently on the next stages of my treatment and how I’ll be going about it. I think I’ve got a better perspective of it all this time round. Last time I was in pain and I just wanted treatment to get started. I couldn’t tell you what I was thinking or what I was going through coz I can’t remember. I was taking a lot of pain meds and slept 80% of the time.

But this time, I’m aware of quite a lot. Like for example, my head hurts. And I don’t mean I have headaches but I can actually feel that my hair is going to fall out. It’s strange I didn’t know that you could feel it. I’ve never heard any stories of this before so am I the only one that can feel it? Or is it just not talked about? I didn’t feel it happening last time but that could be because I was in pain last time so did the pain of the cancer numb out the pain in my head? The only way I can explain it is it’s a bit like when you have a really bad cold where it’s bordering on flu and your hair hurts. To move it, to brush it, to touch it. Or maybe if you have a really tight ponytail and you take it down at the end of a day and you get that relief but it’s a little sore. It’s kinda like that. I can’t help but imagine these little bugs under my skin munching away on my hair follicles. Haha. I knew what was happening but it’s only on my head I can feel it. I can’t feel it on my arms or legs where other hair is. So maybe my head is just super sensitive at the minute. You might just think I’m being paranoid and a little sensitive to the fact that I know I’m going to lose my hair. I’m not. I can pull my hair out. It’s not normal to tug your hair and be able to see 10+ strands of hair in your hand. Go on, give it a go. I bet you won’t pull any out, maybe just 1 but not a lot. I got mum to clipper my hair the other week when I finished chemo. I didn’t see the point in the 80s bouffant if it was all gonna drop out. I don’t mind it clippered. I’ve been told I can pull it off. Haha.

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Little things have become a little uncomfortable to me now that my head is so sore. Showering my hair takes a lot of courage to do. Just the shampooing motion through my hair hurts. It becomes a little less sensitive after about 5 minutes under the water but it doesn’t completely go away. Even pulling on a jumper over my head hurts. That was a discovery I found out this morning when I got dressed. 🙄 it’s even worse when I forget and I go and scratch an itch!

But other than the head,  things are all really good! I’m out seeing a lot of friends this week. Gotta make the most of it whilst I can!! I bought a skateboard too! 😂 maybe I’m being a bit ambitious with that one but I thought it was a good idea! It’s giving me something to do and I can get about on my bad days. Because when it is a bad day I can’t walk very far so I figured on a skateboard I can go further! I don’t think my mum and dad think it’s a very smart idea but hey, it’s getting me out so they’re not gonna say anymore. In time, I guess we will see! Haha