The Invisible Sun

Well yesterday was just the final day of this week's Radiotherapy, and its
already starting to show, as both Thursday and |Friday I was really tired
and I actually succumbed to a nap on Friday.

I think it's a culmination of my normal life doing normal things, and the
treatment, one of them is going to have to give a little, and I don't have
any choice with the treatment so am going to have to look at the rest of my
life me thinks.

The week as a whole though has been good, and this weekend my sister sis up
with her husband, which is nice as it's a change of the norm.

I'm still tired today but don't intend to do massive amounts, as even though
am sleeping I'm not getting any less tired, the Radiographers did say that
though as its not tiredness its fatigue (whatever the difference is)

Were off out today to do a little shopping as its a nice change (although
that's all we appear to do at the moment) so were off out with sister and
brother-in-law.

This evening were off to friends for dinner, I'm looking forward to it as
its going to be a Jamaican and I love different foods.

Will update later

Steve

Tired.

Today has been another good day for me, however the tiredness has really caught up with me. I walked to the end of our road a trip I try and do every day. The road just got longer and longer as I walked.
I had to do the trip though as I needed to go to the post office, and was something I feel I have to do.

I know I can push myself just a little every day but I know I suffer the consequences later in the day. Although am not napping at the moment like I was, today was one of those occasions where I should have possibly had a nap.

Another thing I have noticed this week is the amount of interest people have in me.

I know being a public figure of sorts as Miss Whiplash that I should be used to that but this is my real life. I know I have publicised the whole story of my illness on my blog and on Facebook but people always want to know more. And often people question you the same on a daily basis.

Have found though that because my Radiotherapy treatments are in the afternoon I can stick to a normal day, including food. I can have breakfast and lunch at appropriate times and then treatment and then dinner at normal time.

The timetable also allows both me and Mark to have semi normal days, as he is now going back to work as much as possible and am working from home too.

I'm sure its just me being me, and the attention is a good thing and the positivity is a good thing for me too but it is starting to stress me out a little, hence this blog I can release the info how I please. And its in a truthful manor.

Mark picks up on my stress and it then becomes an issue between the two of us.

Anyway am off to sleep now as tomorrow is another day.

Ps is it almost Xmas soon or something all the adverts are either sofas, games consoles or food hampers....
Sent via the Trouble BlackBerry®

Alone

I have just had a thought about my radiotherapy.

Its something I have to do on my own. Even though people can come with me I have to be alone to have the treatment.

This technically be a very frightening experience for a lot of people. I am here to say that its not a frightening experience at all.

If anyone wants to discuss it with me drop me a line and I will be happy to talk you through it as a patient rather than from a medical side.

Anyway doctors turn now for my weekly check up.

Steve
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Mini update

Well here I am day 4 of my radiotherapy and its the same faces both patients and nurses. This goes some way to adding normality to my life. Hospital is just the new norm.

The other thing is I now walk round the hospital and go to various departments and 1) I know my way around 2) I now am one of the smiling people.

That's the biggest thing about the hospital for me and have probably said it before but everyone smiles. Even the porters delivering the mail smile too. There is a positive vibe about the place, even though the worst ever news anyone can receive is delivered here on a daily basis.

POSITIVITY is all anyone here can have and it shows in all these smiling faces. With a back-up army of love from friends and family either way they all keep smiling.

Will update later as I have to see the doctor shortly for my weekly consultation. Have also had my blood taken too, joy another weekly occurrence.... There is more of my blood in labs round Manchester than there is in me I think. All for my own benefit though so can't complain.

Steve x

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Odd Week

Well its only Tuesday but its already been a funny old week.

With the costumes being slowly sold and visits to the post office now
becoming a daily basis. This is making the new normal for me.

This is one thing I am finding strange, my life has changed dramatically, I
used to be all focused around work on a 9 to 5 basis and then my other jobs
around that. It's now completely different, having to fit in a little bit of
work every day for the office, I have treatment to fit into my day, tablets
to take, calls to make for various appointments etc. It's really odd but I
don't know how my old life actually fitted together.

The problem with my treatment and such is my attention span is shorter than
normal and my short term memory is completely shot. I have to wrote lists of
things to do, or put dates in my diary so that I remember things. By having
structure in my day I'm overcoming all these issues.

The other odd thing I have seen this week is the pictures of Jayne, who came
up with her partner at the weekend.

Mark decided to do her with a Drag makeover, and it was odd seeing someone
wearing my costumes, generally I wouldn't share them with anyone else, but
now that they are being sold its no longer an issue, it's still odd though,
and will be more odd when I see pictures of other artists wearing them.

The other odd thing about the weekend is being centric around my medication,
the day now runs around my meds, and I have to take a few... I'm constantly
watching the clock so that I know when to take them, I used to just take a
Paracetomol every so often when needed and then only when I had the time.
Its strange how the structure of my life has changed.

One other thing I have discovered since I have come out of hospital, and
it's not a bad thing really is I have discovered now have a little OCD for
washing my hands, every time I walk through the kitchen, or past the
bathroom i wash my hands, I used to use a lot of the alcohol hand wash in
the office, but I'm now getting progressively worse. It's not something I am
worried about as it's a good thing, but something I must be aware of, have
let other people know too so that they can monitor it around me.

Oh well me and my little OCD are off to be, and I promise to keep a much
more regular update on here, would be interesting to see if after hospital
visits anyone has experienced an OCD coming on? Let me know if you do,

Steve x

Treatment day 3

Well today is treatment day three, and still no side affects which is good.
Normal life is resuming as normal as It can anyway.

We have been planning the next few weeks of my treatmnt too so that we can
work it into our life, its has been decided that im going to have the
treatment later in the day so that at least Mark can at least to work for
the majority of the day, and I can have a normal ish day working at home, it
also allows me to put structure into the week as well as thats the one thing
I have lost over the last two months.

I'm so glad that I am not suffering sickness from the Chemo, as I can
handle being ill, but I cant do being sick.

This weekend has been great as friends of ours have been up from Norfolk,
and they have been a real tonic, like with Last weekend, it changes
everything it takes theh Cancer Element out of the day and makes it a normal
day.

Nothing much else to wrote today, as its just beeb a nice day with friends,
doing nice things. Thats how I wish to continie and just fit my treatment
into the day.

Steve x

Mega Update

Well I didn't do an update as I had loads on, and then friends came over
too.

Yesterday was the first day of my treatment.

I now have to take close 20 tablets a day as you have seen from the
photographs,

<http://www.facebook.com/photo.php?pid=5779854&id=580802044>
http://sphotos.ak.fbcdn.net/hphotos-ak-snc4/hs892.snc4/72523_445171857044_58
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The radiotherapy went without a hitch, although the appoitment was much
longer than I axpected as she run through absolutely everything. She has
said that my subsiquent treatments will be much quicker as it will be a case
if turn up, get clipped in and get zapped.

The chemo also started on Friday, which consists of 5 tablets.

The only problem with Chemo is the sickness. So I take an anti sickness
tablets as well. The sickness was the main worry of mine as I donr do being
sicl. Luckily I havent had any sickness on either Friday or Sunday.

The only problem is the headaches. Ever since I have come off the steroids I
have had progressively worsening headaches, and have been taking painkillers
to combat them, this has now been combatted as they have put be back onth a
small dose, and they have halped dramatically.

I have also been told that I have to drink lots more water as this will
combat the fatigue that I will start to feel over the course of my
treatment, so my new man-bag accessory is a sports bottle of water.

Other than that its been a normal weekend we have been shopping with friends
who have come up from Norfolk for the weekend.

Will update again tomorrow.

Steve

Normality has started to return..... For today at least

Well today has been a semi normal day for me, I have even made an appearance
in the office for a couple of hours. Which for me was nice as I have started
to claim back my normal life.

I didn't actually get much achieved in the office but I was there...

There has been no hospital today for me (Mark had to go though for me to
pick up my medication.

The medication, although only small, is probably the most important set of
tablets that I will ever take, as they are my Chemo tablets, I don't know
what I was expecting of the tablets but they look just like any other
tablet, I was expecting them to come in a special box or something, but they
don't. Picture is attached.

There is also a few other tablets that I have to take with the Chemo
tablets. First Is the anti sickness drug as Chemo can cause sickness. There
is also a antibiotic tablet as my immune system is compromised whilst on the
treatment, hence why the last few weeks I have been taking immune boosting
medication.

The rest of the day has been spent having lunch with a friend who came over
from Sheffield. It was nice to meet up with them as I don't see them often,
but was also nice to go out and do "Normal Things"

Other than that, it's been a normal day, and as the advert for Macmillan
says "Today hasn't been all about Cancer"

I'm still having the headaches though from the Steroid drug, this was
discussed with the doctors yesterday and they say this is a common side
effect for when you're coming off the drug,, I been off it a week now so
should be stopping pretty soon. Although they may put m back on them when
the Radiotherapy kicks in...

At least all these drugs are keeping me here, so it's a little price to pay
for extra time with the people I love. And as I keep telling Mark, I have no
plans to go anywhere yet as I have a list of things I still need to do.

Right bedtime for me as it's a full day tomorrow.

Steve x

Another Trip to Christies

Well hello my Blogettes (is that what you are if you read other peoples
blogs?

Today has actually been a good day, and relatively fun. Have spent the whole
day with Mark, and a large part of it was spent at Christies.

First was my wig appointment, which was really odd for me, as naturally she
assumed that being only 31 and male that I would have never worn a wig
properly before (oh how I laughed inside) and was trying to tell me how wigs
were made, how they were based and blah blah blah, I would have loved to
tell her that I have over 100 wigs in the dressing room of every conceivable
shape and colour, but I didn't and she promptly started putting these wigs
on my head.

I have chosen something that's close to my natural style and colour, and
need to go for another fitting in the next week or so, which is lucky as of
next week, I will be attending the hospital every day Monday to Friday for
my Radiotherapy treatment.

One thing I would like to say to you guys is thanks for all your positive
comments and messages, I have people who I don't even know now sending me
messages saying that the blog is an inspiration and it is giving them the
willpower to keep going. That means a lot, and sounds like I am blowing my
own trumpet, but if what I am doing with this blog is helping others then it
makes it even better.

The only downside of today is the headache I have had since Friday. The
downside of coming off the steroids that I have been on since I was admitted
to hospital, I am effectively having withdrawal symptoms and the headache is
part and parcel of this, luckily they are decreasing every day and I should
be free of them in the next few days, however the radiotherapy can cause
headaches so I may have to go back on them again....

Oh well never mind.

Tomorrow I have said I would like to go to the office and say hello to all
the guys, as two of them leave on Friday and I know I will be busy with my
treatment then so would like to wave them off as they have been a great
team. That and it gets me out of the house and back into a normal swing of
things.

Right am going to sign off and head off to bed with a DVD, I will probably
be asleep before the opening credits roll but I do that anyway so no change
there then.

TTFN

Steve x

Another day, another step closer

Well today has been a bit of a mixed bag of a day.

Mark has been in work all day so have been Home Alone.... which although I
have been occupied has lead me to thinking, not something I am good at, at
the best of times but with everything else going on I think about the wrong
things.

I sadly worked out that the 12-18 months prognosis I have given takes me to
March of 2012, that's one month before my 33rd Birthday which really got to
me. As I would like to get to a ripe old age. This on top of other things
has really got me down today, even though I have been putting on a brave
face and carrying on as normal.

By aim then is simple to celebrate my 33rd birthday. I might even throw
myself a party, your all invited.

I really dont want to write any more today as I feel so down, I even burst
into tears earlier with Mark, have now sold a few of my costumes through the
shop, and although I see it as a business transaction, its like selling off
the posetions of a dead relative or friend, something that is such a big
part of me is now nolonger. People have tried to keep me positive about this
but it still hurts to see them go.

Anyway am going to go and try and get some sleep, another day omorrow,
another day im going to sand up and fight.

Positivity

Steve x

Back to normality

Well it was back to normal late yesterday and so didn't have the time nor
the energy write a blog. It was just so nice to go away this weekend have no
mobile phone or internet (even though they were there if we needed them -
and I used it briefly on the Saturday) The rest of the time it was switched
off.

I have come back now and Mark has started decorating the small lounge which
to be fair is almost done all the painting and papering is now done, he's
worked bloody hard in there today whilst I have been entertaining guests.

A friend from Israel also came to see me (and other people as well) which
was nice as I haven't seen him in about 2 years.

One thing that struck me today was one of my friends asked me after a fly
comment I made as to how I can stay so positive and almost trivialise the
fact I gave a life limiting illness (I don't think of it as terminal, its
life limiting, it depends how you think about it, and like my Uncle says
Asthma is life limiting, so anything is possible)

My simple response was if I let this thing eat me up, and get to me then it
will make me ill (both physically and mentally) By keeping positive and in
some ways trivialising it then it doesn't get to me. It sounds wrong to say
that I trivialise my illness but to me it's a self defence mechanism. It
would be interesting to find out how other people handle things.

The rest of the week appears to be pretty straight forward with a final
fitting for my mask on Wednesday afternoon and a wig fitting. Then my
treatment starts hopefully on the Friday. The only thing I am not looking
forward to wit the treatment is the chemo sickness. This is something that
not everyone gets but is a common side effect, knowing my luck I will be
sick, so again that's another medication that I will have to take to
counteract the chemo.

All the other treatments have their issues but I know that I have to put up
with these, however sickness is not something I am good with, and I turn
into a right moaning ld goat...

The one issue I have got at the moment is my scar in my head, its itchy as,
people keep telling me this is a good sign of it healing well, I know this I
can feel this, but its driving me wild.

Oh well, must sign off I have eBay to check for random items, ever since I
have been at home I have been trawling eBay for the most random things, and
then watch them to see how much they go for, I have watched everything from
ice machines to CCTV system. I need more things to occupy my time I think.

Steve x

A little bit of france

Whilst out enjoying the fresh air in Darlington. We have been brought to the Bowes Museum a french style chateau that was built to house the Bowes collection of fine antiquities. Unfortunately it was never finished and is now only parr used as a museum the rest is used as office space. Unfinished and unseen. Such a shame. Picture is front entrance.

That's one hell of a front door.

Steve x
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Away

Well its official. Am sat in the car off up to Darlington for a getaway. A friend of ours lives up there and insisted that we spend the weekend with him. There has been lots of offers of visits and stays from people which is really touching.

The next few weeks are going to fly by with visitors. ,ext week we have friends from Norfolk and then the weekend after its the visit of my sister.

My treatment starts on the 22nd of this month. My final fitting and dry run for the Radiotherapy is on the 20thn so again another busy week at the Christies.

Also on the 20th I go for the first of my wig fittings. Now if you have seen any of my recent pictures you will know my hair is the longest its been in years. This will change when treatment starts though and I have said that I will cut my own hair off rather than see it fall out. It was a good friend of mine (and my drag sister) that said when someone he knew had cancer and was having Chemo they had to cut their own hair off as part of their own mindset. This made sense to me and will be following the same process.

Back to a shaved head for me then, just a little shorter....

The wig isn't for the hair issues! Its more to do with my scar which I can feel is still very prominent, and whilst being at the hospital have also seen a few other scars.

The wig simply gives me the option to go out and be unnoticed . Unlike the day after I came out of hospital and someone noticed the staples in the back of my head and said to their partner that it was minging. I chose not to say anything because I didn't want the hassle but Mark said that if he had heard it he would have had something to say. I just don't need the stress and frankly I can't be bothered dealing with other peoples issues. The wig sorts that problem out.

Anyway I'm about to fall off the end of the earth (as far as mobiles and texting etc go) so better sign off and send this. Will have to see if I can fine a Ye Olde Internet Shop to update from over the weekend. Or I could just write them on my Blackberry and send them when am back in the wifi world....

Will see what happens. Stay positive guys and remember to spread a little infection. Smiling is infectious, and is one bug we could all do with having in our system.

Steve x
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Wedding Aniversary

<http://www.btbuddies.org.uk/blog-buddies.html>
http://www.btbuddies.org.uk/images/btb_badge.jpg

Hi Guys.

Today has been a good day, not just because I feel good but because its also
a milestone for me. It's my 4th wedding anniversary with Mark.

I have also been added as a BT Buddies Blogger, and had a couple of messages
from people that have said they are following my blog, its nice knowing that
my positivity is rubbing off on others.

Both me and Mark said yesterday that we hadn't got a card for each other as
it didn't matter. But today he came home from work and he's got me a card
and a present. I feel guilty that I haven't got him anything but he said
just being me and being here s good enough.

He also bought me the sign that we saw the other day in TK Maxx its now
going to be displayed proudly somewhere in the house. It's my official new
slogan, if anyone wants to share it with me then feel free, if you email me
I will even send you a copy of the picture (I could even be technical and
scan it...)

Today has also been a busy day on my shops on Facebook. Since my diagnosis,
I have decided with the support of Mark that I am going to retire from the
cabaret circuit. When I get the all clear and am in remission I will be back
though... so be warned)

As a way of clearing out we are selling all our costumes and accessories, we
will buy new at a later date.

Some people may think that I am being very optimistic with all this but it's
this optimism that keeps me going. There are people out there that have
beaten the GBM and the prognosis of 12-18 months. I intend to be one of
these people.

If anyone would like to become my friend on Facebook and keep updated with
what am doing please search for Enid Whiplash
http://www.facebook.com/enid.whiplash or look out for Mark (Bobbie Dazzler)
http://www.facebook.com/enid.whiplash#!/bobbiedazzler and let us know you're
from BT Buddies or from our blog, it's always nice to know the people out
there.

Tomorrow were off to a friends in Darlington for a quiet weekend away. It
will be nice to get out away from the house and just be normal, or as normal
as I will ever be lol. Our friend has planned a few things that are not too
strenuous as he is aware of the situation.

Well will update more over the weekend.

Steve x

Fitting and tests, and TK Maxx

Well, today was my fitting for my mask in readiness for my Radiotherapy.

The mask loos very odd

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It lools rather odd, but is basically there to hold my head still during the
treatment. I have to just switch off and let them do what they want to do.

The three appoitnents I had today were to ensure that the mask was the
correct size, and also to mark where they are going to apply the
Radiotherapy beams, so now it has lots of crosses and measurments on it. The
doodles obviously mean something to someone..

I also mad an appoitment at the wig room for next Wednesday too.

I have been told I may end up going bald, I may only go bald on select
patches. So having a wig will give me the option of having a full head of
hair if I want to go out. - will be odd for me to wear a wig without the
whole getup of miss whiplash on as well.

I was also contacted today by someone on facebook who has a family member
who has just been told they have to go for tests for somethin gin their
head, like I did at the start of September.

This is a hard thing to discuss for anyone, and having been there and been
told the worst news I do feel for them, the waiting is awful.

The only advice I could give them was to be POSITIVE, there is noting else
you can do. Being positiveis to me is the most important thing I can do, and
those around me can do. If im positive in my mind, then im hoping that my
body will follow suit.

We found a poster in a shop and it sums up exactly how I feel

It's a comedy slogan, but it actually touched me and is basically how I
feel. Team Steve is standing up ready to fight this thing.

Anyway, today has been a good day and tomorrow is going to be better.

Anyone that wants to drop me a line please do so, all I can offer is a
positive comment and any adice that I have picked up along the way.

Steve

It gets better

Today got better.

After last nights little breakdown I managed to sleep, and wake this morning
with a few thoughts, but I have had things t do today and therefore I have
managed to have a positive day overall.

I have had a conversation with my mum and with mark about things that need
to be discussed, and even though we didn't discuss anything its proven
something to me that I am capable of having that conversation. So in the
next few weeks there will be conversations had that I wouldn't normally like
to have, if you get my drift.....

In other areas of my life, I managed to do a couple of hours work for my
office job, which left me positive. And have managed to do a little work on
the shop with mark, it's all on Facebook at the moment but will slowly go
onto the website too.

The shop is working really well and gives me something to focus on, which is
good as my attention span is shocking at the moment, for example I walked to
the post office, which is only at the end of my road, to post a letter and
have some passport photos done.

I posted the letter and was only when I returned home that I realised I
hadn't had my pictures done, so I had to walk back down again, which left me
tired. Never mind....

Notebooks and "To Do" lists are becoming an important part of my life I have
to write it down otherwise I forget about it immediately. So with a Job, a
shop, hospital visits and general day to day things to do, I write it down.
I just have to remember where I wrote stuff down as I have a few lists...

Anyway its late, and am tired so am off to bed.

Full afternoon in Hospital tomorrow for various appointments relating to my
mask etc.

Will update again tomorrow - its on my list of things to do...

Steve x

Today is just one of those days

Last night in bed I realised a few small things, and it was hard for me to
accept.

As much as I am prepared to stand up and fight this illness, it may get the
better of me. Obviously I am willing to try anything to give me the extra
time.

Last night though like I said was hard, the small things like I may not see
my 33rd birthday, I may not see next Christmas. There is lots I would like
to do, I have always wanted to go to Lapland for example, but these seem
trivial now, but I still want to do them to say that I have done them

I will admit it hurt deep inside, the fact that I may leave this earth and
all those that I love around me, Mark, My parents all four of them and my
brother. The hardest thing will be the goodbye, I wouldn't want them to see
me in pain or suffering.

I also have to go and tell another family member today that I am ill, but my
Gran is 86 and the whole thing would make her worry so much, it would make
her very ill, so for her sake and my sake too in a way I am only going to
give her a portion of the truth, which is harder than telling her everything
as it's like a lie.

Its days like today when I could easily just stay in bed and just ignore the
day, but that is admitting defeat, and am not prepared to do that.

The best way I can cope with this is to get on with the rest of my life no
matter how long I have got and just sort those things out that I need to do,
and unfortunately today and the mood I am in I have looked at funerals. Not
something I would like to ever plan for myself but I want it to be right,
and will sit down with Mark in a few weeks when I have looked at options as
untimely it will be him that has to carry out my last wishes, I just hope
that these wishes don't have to be executed for a long while but they still
need to be made.

Anyway, have things to do and sort, so will update again later on how my
mood is going. I'm keeping positive and need to go for my daily walk so that
should blow some cobwebs out my head.

Steve x

Another day

Well today has been yet another good day, things have gone well and we have
managed to get a lot done. We bought the paint for our lounge. We were going
to start decorating the lounge before I was taken into hospital but then for
obvious reason that was put on a back burner., however now that am feeling
relatively OK we have decided to decorate the lounge, as its somewhere I
will be spending a lot of time when my treatment kicks in.

It's nice to be able to go out and buy all the relevant bits and pieces
needed, although I am tired now as we have traipsed around a few different
shops.

Like I said yesterday, I'm not going to allow the issues of my illness to
get to me, there will be plenty of occasions over the forthcoming weeks
whilst I'm in the middle of treatment for me to feel down so whilst I am fit
and able am also going to be positive and upbeat.

I have also started on an regime of Immune system boosting vitamins etc
today, as the Chemo will lower my Immune System whilst I'm on them, this
along with my Swine Flu and my Flu jabs I'm preparing for everything, that
and I have had all the relevant Jabs for India, so i have a fighting chance
of not getting Yellow Fever.....

Friends came over today which was nice, they are a lively bunch and really
brought a smile to my face, it's in time like these that friends really do
become important, and if your reading this I would just like to say thanks
you all.

Anyway am re-watching Harry Potter, so am going to just relax this evening
and miss the end of the film.

Steve x

Sleeping In

Today has been a great day, what we have seen of it anyway as we didn't get
up till almost 12... It was actually nice to have a sleep in as the last fw
weeks its been very little sleep and up really early. So today was back to a
semi normal state for us too.

Haven't really done much this afternoon either as I did quite a bit of
walking yesterday so am pretty tired, so have had a lazy day.

This evening my parents came over and we had a nice dinner the 6 of us. We
had the great traditional meal Curry, Mark manages somehow just to throw
loads of things together and come up with a really nice meal. I suppose
that's another reason why I love him so much.

Other than I haven't actually done much today. Like the Macmillan advert
says, today wasn't all about cancer. In fact that hasn't even entered my
head today, other than talking to my parents about the mask prep I did the
other day.

Tomorrow is another day, let's see what that can throw at me. I'm ready.

Steve x

Today has been a good day

Today has been a good day, and I have actually been in a god mood.

I did some work this morning from home, I quite enjoy working from home and
was actually at my desk well before 9am, maybe I should have worked from
home years ago...

At lunch I had to set off to Christies for Day three of my treatment
preparations.

I wasn't in the hospital very long, just one simple scan and I was away. I
then travelled independently into town, this is something I don't tend to do
of late and have always been accompanied by somebody, normally Mark. From
the bus in town I strolled through the Arndale waiting to meet Mark who was
already in town. It was nice to just be able to go free, but also odd. My
whole perception about shopping has now changed and material things are no
longer important. I used to be able to look in shops for hours but I
couldn't be bothered today.

This evening we went to Ikea to look for a light for our lounge, we ended up
buying candles and a plant. The plant is an orchid and was a gift from a
friend.

Were back home now and I'm pushing out the boat and having a drink, Fresh
orange and Lemonade.... Never mind it's all good for me, this is the start
of a whole new Steve.

Will update tomorrow

Steve

Another day over

Well another day of sorting things out is over.

Day two at Christies is over too, and I will be back there again tomorrow.
Not that I knew about it, it wasn't until late this evening that I found out
when I got home I have another MRI scan tomorrow.

I have then got three appointments there on Tuesday of next week for the
various stages of my mask fitting.

I started the fitting today for my mask, which is a longer process than I
thought but was OK. I was very anxious about having the mould made of my
face, but It was actually a strangely relaxing process, kind of like having
a facial or a face mask. If I was left there any longer I would have gone to
sleep.

After this we went to make an appointment at the Wig fitting room, I know I
am going to be losing my hair so I thought I would make the arrangements
now, as although I do wear my hair short normally, I will be very conscious
that I will be losing it all and I will be left with my scar on the side of
my head from the surgery. At least if I have it here I have the option of
wearing it out or not.

That's the main problem with this whole illness, it takes away a lot of your
choices. By fighting it, and stepping up to the challenge I can achieve
things though and am able to regain these choices, as with the wig.

The picture enclosed is the final part of the mask application, this is the
full mould completed. This is then taken and made into the mask.

Will Update more on tomorrows scan, which as far as I can tell is pretty
much a routine thing,

Steve

Flu

Well today is my second visit to Christie's. However this morning I have been chasing a flu jab for both me and Mark. Were currently on our way to have our Swine Flu jabs. We have to have these first and then the normal flu jab 4 weeks later. All this because my immune system is compromised during my treatment.

Its all hectic but its keeping me occupied which is good.

I even did a couple of hours work this morning. The system is really slow but I just set the reports off and basically let it run, that isn't a problem as it can just do its own thing and Meesha collects the printouts in the office. Pure teamwork.

So far a good day.

Will update later.

Steve x
Sent via the Trouble BlackBerry®

1st Visit to Christies Hospital

Today was the first of many visits for me to the Christies Hospital in
Manchester.

Pretty much a routing visit, I had blood tests done, which have been told
will be a weekly occurrence, and also signed the paperwork to allow my
tumour to be sent to Belgium for testing. They have offered me the
possibility of being put onto a trial Drug, This will be alongside my other
treatment.

My Tumour has to be tested to see if I fit the profile of the trial, and
they have said that there is a 40% chance that I will fit it. To me this is
still 40% more of a chance than I had yesterday.

Have also started working from home today. There were a few IT issues but
these are now solved, so im back up and running, which is good for me as it
gives me something I can focus on and occupy my time. I will not become an
ill person and sit and watch daytime TV.

Back to the Hospital tomorrow for my first appoitment for my mask to be made
in readyness for my Radiotherapy. I'm not perticulaly looking forward to
this part of the treatment as I dont like my face being covered, but its
something I have to do so will have to put up with it, I will ask if I can
wear my ipod and just zone out - Mark will be with me though so I should be
OK. I have to wear this mask every time I have the Radiotherapy which will
be for 30 sessions (Monday to Friday for 6 weeks)

I Have also been told that I will lose my hair, hence all the hats im
buying. I'm being practical and fun at the same time. I will be losing my
hair in winter so its going to be cold, I dont know how I feel about losing
my hair becaise I wear it short anyway nirmally, but iut now hasnt been cut
for about 2 motnhs and its getting pretty long, and am slowly becoming
attached to it. Having the choice removed will be the hardest part, but in
saying this I have said as soon as it starts to fall out because of the
treatment, I will be shaving it off (or Mark will at least).

Well am going to sign off now and say a quick thanks to all the people that
have sent me positive messages both on Facebook and email etc. It really
does mean a lot to me and its these positive things that are keeping me
going.

Steve x

5th October 2010

Today has been a good day.

I haven't cried today. I used to have a poster on my wall that said "Laugh
and the whole world laughs with you, Cry and you get wet"

How true. I know some of you will be thinking that crying is all part of
healing process, and am sure your right it probably is, but I don't intend
to do any more, I'm just going to be positive.

Other good news is Mark has found stories of other GBM sufferers who were
also given the same prognosis as myself. There are a couple on there that
have so far lived for over 20, so there is hope for me.

Everyone around me is positive too, which is a real boost.

I also got a phone call from Christies today for the first of my
appointments for my Mask for my Radiotherapy. This is to ensure that when
they are administering the radio waves, it is directed to the exact place
every time. I'm not looking forward to this part of the treatment as I don't
like my face being covered, but sometimes you just have to live with it, and
this is one of those occasions.

So this week I'm at Christies Wednesday for my Oncology appointment and
Thursday for the first of the mask fittings, so a busy week for me.

The other good thing that's happened today is that my office has installed a
Pc in my house. I can actually return to some kind of normality, albeit
working from home. As my sleep patterns are slightly deranged at the moment
I will be able to do a few hours work throughout the day and still feel like
I am involved in the office. Some of you may think I am mad wanting to go
back to but it's the time off that's actually making me ill. That and I just
can't face watching endless chavs on Jeremy Kyle and whatever other
programs. I don't even switch the TV on in the morning.

Anyway am going to sign off as it's been a long day and am actually tired -
even though I did have an almost three hour nap this afternoon.

Till tomorrow

Steve

x

Sunshine

Somebody somewhere is smiling on me. I decided yesterday that today was
going to be the first day of the rest of my life. If I think I want to do
that I am going to do it, if I want to buy and wear a big floppy hat, then
that's what I am going to do.

Today I woke up to a nice frosty morning with clear blue skies. Something I
love.

There is only one way from here and that's onwards and upwards.

Right Walking boots on, we got places to go, people to see, and mischief to
cause along the way, who's coming with me, the more the merrier.

Steve x

Today is better

Today has been a much nicer day than yesterday. Its been a much more normal
day. After Mark delivering the news to my parent yesterday of my prognosis I
felt like shit and just wanted to end the day as soon as I could.

Today though has been different. Nothing can ever change what has been said
and such but, but I can work towards a positive day.

Today was the first of those positive days, my mum came down to the house
and the three of us went shopping. Today has become my hat day. As I know I
am going to be losing my hair I have decided that I will wear a hat whenever
I need - going out and such so want a range of hats, Mark has even decided
that he is going to make me one, even my brother said he is going to get me
one from his Army camp, I have a funny feeling though that I am going to be
inundated with hats of all kinds.....

Who knows hats may even become my signature item, it works for Boy
George....

The other realisation I had today is that I need to be be positive and that
I need to start living, therefore 4th October 2010 is the first day of the
rest of my life, it sounds corny, but I dont give a shit. The doctors have
said on average I have 12-18 months, but I want to prove them wrong, as much
as I respect them I want to rubish these figures and fight this illness and
give them a whole new set of figures to play with.

Sorry Doc, but on this ocasion I think your wrong, and am going to prove it.

Other positive things today is I actually havent cried today. Its been the
smallest things that set me off but today, because of the good times we have
had I feel good.

I would like to just say a big thanks to the friends that have sent me
messages on Facebook and privately, they really have lifted me and Mark.

Will update on the first day of my life tomorrow. As our website says, hang
on in there its going to be a bumpy ride and lots of action along the way...

Steve

Results update

Well I said I would write more this weekend so here goes. This is probably
the most difficult post I have ever written, it seems to be usual for me of
late, there's been a lot of difficult things for me to do and times for me
to endure over the past month, I have got through each of them in no small
part due to the love and support of those around me which includes those
friends Mark, (Bobbie Dazzler) and I have online, some we have never met and
others we rarely see.

If you've been following you will know I was admitted to hospital 8th
September following the discovery of a growth behind my left eye. On 15th
Sept I was diagnosed with a brain tumor and on 22nd I underwent major brain
surgery to have it removed. Following removal the diseased tissue has been
analysed and I was invited to the hospital this week to learn the results on
Weds 29th Sept.

The anticipation of Wednesdays result has been very stressful for both Mark
and I, the uncertainty, the fear and the simple "what if" when your mind
thinks of what this could be.

On Wednesday my worst fears came true. I have been diagnosed with a fairly
rare form of Brain Tumor, a Glioblastoma Multiforme (GBM) or Grade 4 brain
Tumor. It's malignant and very aggressive, there is no cure and my
condition is terminal. The prognosis is not good. I can't begin to explain
how this has shattered our world and that of those around us.

Many of you will have seen facebook updates from Mark (Bobbie Dazzler)
advising we have now retired from stage, with just a few exceptions we have
been overwhelmed by messages of support and good wishes. This post will
probably explain those posts more clearly.

We have not posted this before as My parents have been abroad and were not
aware of my condition, I wanted to see them and tell them personally before
they found out from those around us and them.

I will receive treatment which will commence within 3 or 4 weeks, I will
receive radiotherapy and chemotherapy on a daily basis, this cannot cure me
but may help extend the time I have by fighting off the disease a little
longer.

I am sorry that this may make uncomfortable reading, it's not nice to write
either but, I don't want people to make their own assumptions or guesses and
don't need an outpouring of pity, I want to enjoy the time I have. In
saying that I am really encouraged and touched by the messages received for
both Me and Mark, they really mean a lot.

I will update more in the next few days, please keep reading, it's nice
knowing you're out there.

Xxx Steve - Enid Whiplash

Update

I haven't updated the blog for a few days as it's been a strange few days.
I'm writing it all down and will post it on line in the next few days.

The best thing is though that I have had my staples out though and I have
managed to wash my hair - bonus because I was starting to feel like a chip
pan.