ALL VIDEO'S

For some reason all of my video's on this blog are not responding!!!
I've got my technical support team on the case. So hopefully I can get them back up and running as soon as possilble

February and September

Me and Lee

Thank you for my lovely purple hat Danielle

Hair update

Do you think I should be charged £25 for a wet cut?
I went into the hairdressers earlier today (one I have been in before and they know me)
I asked how much it would be just to tidy up the edges and even it out a bit.
I could either have a re style for £17.50
or a wet cut for £25!!!
Do I look like I need a fucking wet cut or re style!? (I obviously didn't say that).
My sis suggested to the receptionist about charging me for a gents cut instead!
Then a young stroppy girl (another hairdresser) pushed passed me and said to the receptionist (didn't talk to or even look at me) she can't have a gents cut it has to be a ladies cut and walked off.
Bearing in mind I had gone in and took my hat off so they could see what I was asking for and other customers were already looking at me.
The receptionist just looked at me. I said don't worry about it (nearly in tears) and walked out. This has REALLY upset me. I think I did really well not to cry. Good job my sister was with me.
You know what I'm like about my hair etc anyway and I was being brave just going in there (for me) I won't be going in any hairdressers after today for sure!!!

Me eyes!!

I go through stages with my blog!
I will write loads at once and then not any for ages. It's not a case of only write the crap stuff, but my blog is my therapy.
Also my computer is a bit old now and overheats really quickly! and the battery doesn't last very long.

Anyway I think my radiotherapy may have affected my eye sight a bit! The aim was to get the radiotherapy to come down as close to my eyes as possible to be able to reach as much of my tumour as possible. They said it wouldn't go down any further than my eyebrows.........but it did. I've lost hair in patches on my eyebrows and that's not growing back.
I had my eyes tested, not 20/20 vision as last time. Close up is a little bit fuzzy now but still 20/20 long distance.  Lee says it's my age...Cheeky fucker!

Drug update

1. Keppra
2. Carbamazapine
3. Lamotrigine
4. Oxcarbazine
5. Topiramate 
6. Phenytion
7. Clobazam
8. Zonisamide
9. Epilim
10. Retigabine
11. Lacosamide 

Currently on 3,6 & 11
Started Lacosamide in June. It's pretty steady at the moment! No major side effects....dare I say it.
 

The Latest hair

5 Months after Radiotherapy.
Mask marks STILL on forehead (apparently I'm unique)

I thought this was classic!!

Life

Life

Life can be hard
Life can be happy
You make your life your own
You lead your life as you make it
Sometimes life is dull
Sometimes you can't live life the way you would like to
Life is full of ups and downs
You can live your life on a high
You can live your life on a low
Life can take you to the top
Life can bring you back down to earth with a bang
Life can make you sad
Life can make you feel alone
Life can be blind
Life can go wrong
Life is short
Life can be short lived
Sometimes life could look bleak
Life can lead nowhere
Life can be scary
Life can be imitating
Life can seem pointless
Life can be messy
Life is full of mistakes
Life can never be turned back
You can't make life's wrongs right
Life is confusing
You only get one chance at life
Life can make you feel cheated
People can make your life happy
People can make your life sad
People can lead your life wether you want to or not

christie park

I'm a gym bunny again!!

It's really hard going back to the gym. Not physically but mentally difficult.
After being a fitness & aerobics instructor for nearly 8yrs, loving my job, being G.I Jane, being super fit and teaching other people. To now go back to a gym and be a "newbe" being treated like a "numpty" is not a nice way to start back.
Loads of things remind me of my work days in the gym (obvious) breaks my heart a little bit.
I have said to them that I had used gyms for 7yrs previous to my diagnosis and that I am an experienced gym user, so they are not under any impression that I'm a beginner or someone that doesn't really know what they are doing.
(I haven't done any exercise for about 2 years now)

I deliberately didn't want to tell them what I used to do for a living, I just want to be me and due to personal experience I know instructors tend to un intentionally change the way they are with you once they know you are or were an instructor! Things like "oh you probably know that already" or "you could probably teach me a thing or two" or "you won't need me to show you that"....that sort of thing!!
But I obviously have to tell them about my epilepsy and it's like they are putting the kid gloves on and telling me to take it easy before they even know what I can do, like "do a step forward instead of a lunge" as if I have never done exercise before. I don't wanna do fucking steps forward!

My doctor even wrote them a letter saying I am physically able to take part in ANY exercise as long as they or the person with me know how to help/react to my seizures.
I just wanna get in there & get BEASTED!! But it seems like they are affraid of me doing anything more than a walk on the treadmill in case my epileptic brain explodes.

I found it really hard today to stand there and be understanding and patient with the instructor.
I know what it's like to be the other side, to be an instructor and I know how difficult it can be sometimes. Plus they don't know me!!

I will probably end up being like a thorn in there side. But I'm not going to fanny about and I am going to get the most out of this.
I'm facing the fear and am brave enough to go, so I don't want to waste my time whilst I'm there.
I've got my fitness test next week, I'll show all the determination (and tea fuel) Jane Shann is made of :-)

Don't worry.... I know my limits (years of training don't you know)
I expect a lot of you are reading this and thinking I'm a complete loon......Yeah, your probably right. 

Quote's of the day

I keep the telephone of my mind open to peace, harmony, health, love and abundance.  Then, whenever doubt, anxiety or fear try to call me, they keep getting a busy signal - and soon they'll forget my number.  ~Edith Armstrong

 

It's not what happens to you that determines how far you will go in life ;it is how you handle what happens to you.
Zig Ziglar
 

Instead of complaining that the rose bush is full of thorns, be happy the thorn bush has roses.

- Proverb

I hope these quotes make you feel a bit more positive with whatever you are up to this week. I know I need a bit more of the positive love :-)

Feel The Fear and Do It Anyway.....ah go on

"Feel the fear and do it anyway" is my new motto

Had another one of my big ones on Friday (4 mins) longest and worst one ever. It scared the shit out of me and I was thinking I wouldn't come out of it the other end (seriously!)

I'm going to start calling my fucking awful big ones MIL. See if you can you work out what I'm on about!?..... ;-)

Anyway since being over the side effects of radiotherapy and coming off of Epilim, compared with what I felt like before....I feel like Jane on red bull.........Well not all of the time.

Joined a gym & done my induction. Done my first class tonight. I'm so excited to be back! sad I know. Wooooooooo Hoooooooooo ......Skippedy skip.

I won't be doing Jumping Jacks tho, as I still wet myself a little when I do those!! (after having Jamie).

I will always have one of "my people" with me, just in case I need them. It's much better training with someone else anyway.
Linda is my main gym bitch!! she seems a bit freaked by my G.I Jane type attitude. But then she never knew 'fitness instructor Jane' and what I was like in my "old life" (I've only known Linda a year). But bless her she's well up for going, doing it for me. So that I get to go.

I'm been feeling very seizure-ish the last couple of days, so I think a MIL might be on it's way.

In brief..... Worst ever

Feeling down down down diddy down.
Had the worst seizure of my seizure career so far yesterday!

It was like a tonic clonic but with awareness and feelings of what was happening to me.
I had convulsion's in the whole of my body, I usually only experience these on my right hand side. Lost visual awareness (which I normally have throughout) but I could still feel & hear everything that was happening to me. It felt like I was chocking and I couldn't breath. Scary as fuck. Fucking horrible. 
I couldn't move any part of my body for a good 10 mins after my seizure. I just had to lay there and cry!!!
In the end it took me about an hour & a half to recover from this one.
 
I feel like I've been beaten up today. Like I've been kicked in the back and punched in the head.

Louise

The best thing about having a sister is that I always have a friend...... A best friend

Quote of the day

A sister can be seen as someone who is both ourselves and very much not ourselves - a special kind of double.
-- Toni Morrison

Invincible me!

Totally off of Epilim now. Feel so so sooooo much better. I'd got so used to the feeling of tiredness & fatigue that it had become the norm for me. Even after 3 days of being off of Epilim I feel like a new person, more energy and more brain power.......I'm invincible.... haaaaa ha la la heee he.

I'm going to be starting Lacosamide once my Phenytoin is at a therapeutic level and I've come off Lamotrigine. Lacosamide (Drug no 11 for me) I should be on that in about 8 weeks time if nothing goes tits up along the way!!! eg with the other drugs, seizures & side effects.
I'm under no illusion it will "cure" me but hopefully it will give me a bit more stability with my seizures. I'm not letting this big pile of shitness take over or dictate my life any more. After my radiotherapy treatment and coming out the other side of it all now, I'm like "well that big pile of shit didn't work on my seizures. So fuck it lets get on with life, seizures or not" and as I said to a friend who understands, you need to be brave just to stop you being too scared to live. Not letting the fear win.
Simples!!!!....................and the battle continues.

Hair update

3 months after Treatment

Not even a tickle!!

Had scan results. 50/50 It would make any difference and shrink it a little. I was in the shit 50%. Scan showed it to be exactly the same! the radiotherapy didn't even tickle it.
I wasn't surprised, because my seizures had got worse & my seizures always tell a story of sorts!
I'm coming off of Epilim as well which doesn't help. I'm still on Lamotrigine & Phenytoin.
Seeing consultant next week to discuss next step, if there is one!!!!!
Oh well, at least we tried. At least we know.

I don't regret our decision to go a head with treatment, I am just regretful I missed & continue to miss time with Jamie because of treatment appointments and due to tiredness and fatigue. I am not able to do so much with him either due to having a body like an old woman (well my tits aren't quite on my belly button just yet) but just the slow, tired thing that happens with fatigue.

I'm depressing myself now writing this post. Just wanted to do a quick update.

Me now

Lush I know! :(

Thanks Danielle :-)
I wear it all the time (I'm not just saying that)

10 weeks later

If the idea of this treatment was to make me feel totally poisioned and ill, look like a twat and have more seizures, then.......... WOW its fucking worked!!!

Helpful hints for radiotherapy heads....

.....what helped me.

I had a very bad head with the radiotherapy, but some people will only experience hair loss. There are different degrees of how radiotherapy can affect the skin in the area treated. So don't panic it might not be that bad!!!
Oooooo aren't I the lucky one (again)

1. Buy everything you need before treatment starts e.g Cream, baby shampoo, shower cap etc (what the doc's recommend) I never used the shower cap.
   
2. Get a very soft cotton pillow case, 2 minimum is good. Or a sleep hat (I never tried this)
   
3. Cut your hair really short BEFORE treatment. Even if you look/feel like a complete twat. My head very quickly got sore (2 days in) and it was impossible to put cream on my scalp coz I hadn't cut my hair short enough. Also when mine started to fall out it felt like someone was pulling my hair out with each little movement.
4. CREAM CREAM CREAM. I creamed my head at least 3 times a day every day. Use the cream your doc suggested. Don't just buy/use a random.
5. DRINK DRINK DRINK. I'd say this is one of the most important. Will hydrate your skin and helps your body repair. I drank 4-5 bottles of water each day. Just try and avoid caffeine drinks
   
6. HATS. I personally brought specialised hats for hair loss. I started wearing hats on & off for a few months before my treatment started, to get used to them and then during/after treatment people would already be used to seeing me wear hats. I made sure all the hats I brought were really loose fitting.
   
7. Don't under estimate how losing your hair will affect you emotionally. I didn't think it would bother me as much as it did.
   
8. WASHING. My head was so painful my shower was too strong, so I washed mine with a jug (very slowly & carefully) I read somewhere not to wash your hair/head more than a max of 3 times a week. I washed mine twice a week and that was to just to mainly rinse some of the piles of cream off :-)
   
9. Nurses gave me cooling pads as my forehead was so 'burnt' (felt like sun burn) that helped.
10. Keep some of your hair. Weird for some I know!!! but I did
    

Day 30 of 30 LAST DAY

Before


After


At Home

The Fly

Just realised, It looks like someone has mistaken my head for a massive fly and gone a bit mad & fly swatter happy!!

Day 27 of 30

Head update. Not as sore now. How Trendy?? :-)

OMG just had a the shittiest couple days. Had to sleep through most of it! Not just tired shit, but oh my god they are actually poisoning me kinda shit. Also bit emotional. I had one of my fuck fuckedy fuck days, just thinking about 'what about after?' how shit our life situation is, how shit other people can be etc, I think the whole brother situation brought all of that on, oh and I saw someone from my 'old work' at the hospital. So all of the above was wrapped up in a little bundle present of shit. I prefer grapes, the seedless kind thanks.
I cried, Lee loved me better and then he made me some of his lush scrambled eggs on toast :-)
I'm lucky I have my close family to love me better & make me smile and laugh. My boys have been brilliant, me and lee are sooooo proud of Jamie.
Got a constant sicky feeling thing going on. I'm drinking about 6 bottles of water a day (you can't even tell I've weee'd it's so clear)
Prepare yourself for the next bit................
I've gone off T a bit, WHAT!!! gone from 10-15 cups a day to less than 5.......I know!!!
and wait for it...... chocolate as well. I have practically got a basket full of chocolate in my room.
Because of my sicky thing. I just wanna drink cold water, melon & grapes and plain food like toast, jackets, pasta etc. Then I read a thing on 'managing nausea through treatment' and that's what they said anyway. Water, cold foods & plain foods. I'm soooo brilliant :-)
Anyway enough of my gibber gabber. I feeling like i've got rid of that poo parcel present now.

Day 25 of 30 (Shitty day - no friends!!!!)

........At least I have my gorgeous lee :-)

Starting to feel really poorly now.

Day 23 of 30

Radiotherapy head!!


Random Stair Video!!!!

Day 22 of 30

I'm out!! my little day trip



YOU LOOKING AT MY AIR!?? (sic!)

Day 21 of 30

Now its week 5
(my treatment week goes from tues-mon)

Day 20 of 30

Day 15 of 30

Day of the baldy!! looks a bit weird all these pic's of my 'new head'

Sorry video went a bit shit!!

Not the best!!


I'm getting a bit bored of watching me being rough & just winging on! Not that i sit here watching all my video's!!!
I'll tell you the only joke I can remember tomorrow :-)

Blog helper

Sox and E.T helping with my blog.
well I laughed :-)

Yes another Hair post!!

I'm getting 3-4 piles of hair like this a day (when I give it a little brush)
That isn't including all the random stands!!.........corey strand! :-)
It now looks like we live with a big hairy dog!!!!

Family Art & Craft afternoon

You don't need to guess who made the girl!!!

Day 13 of 30

Day 13


Saturday

The latest (day 12 of 30)

Day 10 of 30


Day 12 0f 30

The mask set up (day 7 of 30)

Photo's left to right. The end one is me with all my mask marks (golf ball head) as lee has so lovingly nicknamed me!!! don't know if you can really see them in this photo.

This is to show you all how they prepare the mask for treatment.
In your preparation appointments you are told that the treatment only takes a few minutes, which is true, but that's for the amount of the time the actual radiation is admitted and not the time your in the mask for.
By the time they have put it on, set it up, done all the measurements and completed the treatment from start to finish I'd say it can take up to 15 mins initially.
At the start of your treatment they take several scans over your first 4-5 sessions to make sure its all accurately placed within 1mm. They do this directly before treatment, so those sessions I would say your in the mask for about 10-15 mins.
After they are happy its good to go the sessions get quicker. But you are still in the mask for a while, it's the set up bit that takes the time.
Just thought this may help anyone going for the treatment and know what sort of thing to expect.
Gutted if your claustrophobic!! Even if your not, I still have anxious even panicky times. But I think that's coz I'm worried about having a seizure in the mask. But mostly I'm okay with it, you get used to it in a wired kinda way!!!
Don't think my words of honesty will help reassure anyone! but for me I always like to know what to expect with no fannying about!!

Hair update (day 6 of 30)

Remember hair is 'my thing'
Just realised I look like a floating head!! that's fucking funny considering

How lush is this

Brought a little tear to my eye and made my day

Monday (day 5 of 30)

Another side effect: I've got a dry throat and I'm thirsty all the time.
Head feeling more sensitive today, but no headaches.

Sunday 8th

Slept all day.
This is my hair au naturel!! lush ain't it!?

During treatement (day 2 of 30)

This is what happens. Lee is going to type the commentary to the video. So you know all the bits.
I am just really scared about having a seizure in the mask, can you imagine!!?! what a fucking nightmare. That's why they have the tv's to watch me! and Lee keeps a close eye on me too. So if I have a seizure they can be in there asap.
If it looks like I am pinned to the bed by a freaky looking mask, then that's what it is.....TRUE as.
I said to Lee the whole thing is pissing me off already!! oh and I've got my own self check in card now.... how exciting.

Radiotherapy Treatment



Its me, Lee, the chief cameraman.

The video starts with Jane getting onto the treatment table. Her head rests at an angle so that one of the radiation beams can pass from back to front without damaging her eyes. Her mask is then pushed down onto her face and clipped in. Its very tight but can be removed very quickly if it needs to be.

When the room goes dark a number of green lasers are turned on and adjustments are made to the position of Jane's head so that it's in exactly the right position for the treatment. We all then leave Jane alone in the room, the last person pressing a button on the way out and then a second button when we get to the control desk. The alarm is the warning to leave the room before the radiation comes on.

At the control desk the two specialists read out treatment doses and double check them before starting the treatment. Each dose requires a turning of a key on the desk and the pressing of a separate button. The two cameras that are pointed at Jane enable me to spot if Jane is starting to have a seizure. In the picture you can see the radiotherapy machine moving to each location to fire the radiation in the right area. The actual treatment is happening when the black square on the machine next to Jane's head is rotating. The actual treatment only takes around 3 minutes once Jane is secured correctly.

Day 1 of 30

Before


During: We weren't allowed to film until we got permission.
Got that now, so will commence filming tomorrow instead.

After


Bit sniffy in these......Sorry to all the sniffy haters I know!!!
I look well tired and rough as fuck and that's before it's all begun, oh well!!!. Maybe I'll come out the other side looking stunning.

1 day down 29 to go.........yeh

Mask & CT Scan (video 3)

The planning appointment (video 2)

I just realised i laugh a lot on these
Videos. Might get on ya tits a bit, but hey ho!!

Befofe my treatment starts (video 1)

Hello my sweets