Life has been varied and I’ve experienced good times and bad as I'm sure we all have. In no particular order I'm a Partner, Friend, Brother, Son and Widower trying to make a difference. That's not an exhaustive list but its a good start.
Monday, 29 November 2010
Update update update
A few things have happened since the last update.
The tree and all the decorations have now gone up and everywhere looks very Christmassy.... I even had the Christmas tunes playing today to get me in the mood.
Have started the last week of treatment, I only have three sessions to go after today’s treatment. Today’s treatment was tiring, as the machine was running an hour late and it was actually closer to an hour and half, this wasn’t helped by the fact that we were there just over half an hour early so was a long wait. Today I was taken to the hospital with my dad, I don’t often get time to spend with my dad, so in a roundabout way it was nice. He’s also taking me tomorrow.
This week is another busy week, with tidying up ready for the weekend and then to the pictures on Wednesday (its Orange Wednesday) so I don’t know what we will see, but its nice to get out and just spend time together even though its 3 hours in silence...
Have sorted loads of paperwork out today too, and have shredded loads of stuff that we were just keeping hold of for the sake of keeping hold of.
Anyway, I’m off for an early night, possibly a film in bed, but I will fall asleep so nothing to heavy.
Steve
Saturday, 27 November 2010
Christmas
We started to put the tree up today and decorate the rest of the house. For those that know us Christmas is a big issue in our house and every surface gets a Xmas Makeover.
We normally have at least two trees, the spiral staircase and three fireplaces decorated, altghough this year we have only put one of the tree's up and replaced the other with the huge candelabra. So not much changed really.
One problem with all this merryment is, I have overdone it today and now am aching all over so will be off to bed shortly, i have already had my Radox bath soak, which has heloed massivly.
Tp,prpw were off into town to do the last bits of xmas shopping and then back home to finish the house and tidy up all the mess that it creates.
Till tomrrow
Steve
Freaky Friday....
better.
I'm glad that today is Friday, and that I now have two days free of
radiotherapy, as its starting to get to me now.
Not in a physical way although the fatigue is becoming more and more
present.
I only have four radio and Chemo sessions to go, and then I have a four week
break before I continie with my chemo treatment.
In a strange way its all timed well for christmas, if that could possibly
ever be well timed.
The christmas shopping is now al completed and we just have to wrap it all
up, and then thats one less thing to do.
Tomorrow will be spent sorting out the small things (a huge list of small
things) that we need to do, and will then tomorrow night will be spent
relaxingwith a movie, as I have a feeling that tomorrow I will be aching
Other than that there is very little to say today so will sign off and
provide you all with a big pdate tomorrow.
Steve x
Friday, 26 November 2010
Profiteering
company that basically wants to take my money for being ill.
As most of you will know I used to drive a motorbike, but due to the tumour
and such I am no-longer able to drive - this is not my choice as you can
imagine as it means basically that I lose my independence and I now have to
rely on public transport (which most of you will know I hate)
Anyway back to the point, I had clearly forgotten to cancel my insurance on
my bike and have attempted to do so today.
I paid the last instalment of the insurance in September and am now paid up
till march of next year, all covered - sorted no problem.
However I explained that the DVLA have revoked my licence on medical grounds
and I need to cancel my insurance as I no-longer have the vehicle and the
reason why, the nice young lady then said OK no problem - the cancellation
fee on the insurance is just short of £50. I thought she was joking at the
time as like I say the policy is paid in full.
She spouted on that the general terms and conditions blah blah blah I said I
think that's pretty sick that even though they have had all my money they
want another 50% of the total policy cost to cancel. She wouldn't put me
through to a manager as there was "none available" but she would speak to
her team leader again blah blah blah, and she spouted on that the terms and
conditions do state blah blah blah.
In other words BULLSHIT
After me getting upset on the phone and telling her that I have a terminal
illness with a short prognosis she again spoke to her team leader and they
have decided on compassionate grounds to waive the fee.
Therefore HASTINGS DIRECT INSURANCE.
Your going down in the bad books, and your being named and shamed in my
blog.
If I had remembered at the time I would have got the young girls name and
would make a formal complaint to them.
It just makes you think that even though things are tough at the moment,
there are people out there that would just like to make it that little bit
harder - I'm ok I can fight my own corner, but some people would just have
said OK no problems and would have paid the cancellation, and that's an
extra £50 profit in the bank for a company that probably makes millions
every year, where is their Social Responsibility and compassion? Probably
lost in their terms and conditions blah blah blah.....
Will update more after my treatment.
Steve x
5 treatments to go.
have 5 sessions to go and then am through.
I'm at a total loss of what to say today as I think I have said most of it.
My mum has taken me to the hospital for the last two days, and its been odd.
Even though I like spending time with my mum, it's been nice having her
round the house etc, the trip to the hospital over the last few weeks has
been an escape for a few hours at least anyway. But like I say I have 5
sessions left and my dad is taking me on Monday and Tuesday. I will be glad
though thwhen they are all over as I will get a sense of normality back and
I will not have to be couriered around all the time.
That's the one big issue with my treatment Mark does not like me going on my
own, especially now that the tiredness and the fatigue are really taking
hold.
The tiredness is taking hold now but was better today than it was yesterday,
I must have had better slept better last night.
One funny side effect that I knew to expect, but hadn't had yet was the
"sunburn" on my head from the radiotherapy.
It honestly fells like my head has been out all day in the sun and its tight
and hot. I just have to use my cream and its much better, just odd that its
freezing outside and there is snow in the air and the side of my head is
kicking out its own little heat source.
Comedy moment of the day came this afternoon when someone (I won't mention
it was my mum) suggested that there could be a possibility of me having more
radiotherapy at a later date but in tablet form because of the progression
in technology etc..... never mind it certainly raised a smile on my face and
was something to laugh about.
Anyway am off to bed, see if I can have another good night's sleep
Steve
Wednesday, 24 November 2010
Dr. Day
its the day I visit the doctor at the hospital. The same as I do every
Wednesday.
The last few days at Christies have been difficult because they have been
behind every time I go for my appointment. Which means waiting and waiting.
This just ultimately leads to stress and tiredness, which doesn't help at
all especially when your body is telling you its tired anyway.
Today Mark has had a day off from Christies and has had a full day in the
office, my Mum has taken me to the hospital and is again tomorrow. We did a
little bit of shopping before we went to the hospital which was nice n ot
that we really bought anything....
At the hospital it was amazing I barely sat down in the waiting room before
I was called in for treatment, and then the same happened after treatment
whilst I was waiting for the doctor. I was in and out within 30 mins.
Its sods law really that its been this way, because we have been telling
people how long we have to wait and the one day that someone else takes me
were in and out... Oh well, treatment is priority and I have only got
another 6 to go so cant really complain.
The meeting with the Doctor went ok as usual, it's an opportunity for me to
say how am feeling and ask any questions.
The blood results from yesterday were all ok as usual and there was no
concerns.
This evening we went to the Movies (how American) we went to watch the new
Harry Potter film. Oooh its good, but also slightly wrong as you get to see
a Mr Potter in his boxer shorts..... Slightly wrong as these are supposed to
be school kids and they have all beefed up - Wrong on so many levels - but
if you're a Potter fan you will be swooning too am sure....
The tiredness and aching has not been as bad today as I had quite a good
sleep last night and have drank loads of fluid too.
Other than that my day has been pretty normal, will report tomorrow with
more tales of Christies and the waiting room.
Steve
Tuesday, 23 November 2010
Blood Day
I woke up tired, this is now becoming the norm for me, I could sleep all day
but it doesn't go away so am just sticking to my normal routine and getting
on with it - It worked during the war so the same philosophy applies now.
Have had a very busy Post office run with loads of different things posted
all over the country - the shop is now getting quite busy and is keeping me
plodding on. It's also a motivational thing for me too, as the more the shop
does the more I want it to do and the more I want to push it.
Treatment today was as normal, but I have felt a little bit of nausea, I
don't know if this is something I have eaten or what, but I have actually
taken anti nausea treatment today for the first time, this is amazing
considering I have only got 7 treatments left.
The headaches after treatment are still there and are taking a little longer
to go away each day, but I'm not taking anything for them as I'm trying to
minimise the amount of medication I take as am still taking quite a bit of
other medication.
The fatigue is still there too, but like have said previously, keeping going
and drinking plenty of fluid is helping to combat it, it's still there but I
don't notice it as much.
Today is Tuesday and that means one thing at Christies, and that's blood
day, ready for my appointment with my doctor tomorrow. The Radiography girls
laugh at me because I now know the routine and can pre-empt them and get my
bloods done before my treatment and then once am done I can just go home.
Normally everything is ok with my results and it's just a formality, so
hopefully tomorrow will be the same and we can be in and out tomorrow
instead of waiting round which is the tiring bit.
Anyway not much else to report today other than that so will sign off and
head off to bed.
Steve x
Monday, 22 November 2010
I don't like Mondays....
My treatment has resumed today after the weekend, and it's really made
itself present today.
I have felt a little bit sickly when I took the chemo but I have felt a
little bit sickly all day so attributed it to that.
The fatigue and the headache from the Radiotherapy have also stayed with me
all evening. The fatigue is slowly building up and is now a part of my
everyday life, I find though that if I keep moving its not as bad.
I did got to BASIC today with mark which is based at the hospital and have
signed up for Yoga classes and also massage, as this could possibly help
with the fatigue. These start in December. Have also signed up for Art and
Craft classes, just something I can do on my own with other people who are
in the same boat as myself, as Mark has said its all good saying that he is
there for me he doesn't know how I feel and think, yet someone with the same
diagnosis or condition of me knows what it's like.
Will give it a go, see how it makes me feel I'm sure though that the Yoga
will help and the massage too.
Sales in the shop are going well and have a large delivery to the post
office tomorrow which is good, also have someone coming to look at costumes
too so another busy day for me in the "office" as it were.
Anyway not much else to report today
Will update tomorrow
Steve x
Sunday Service
Today has been pretty hectic with finishing the lounge - just pictures to go
up when we decide what pictures we like and what frames etc, a visit to a
couple of shops for Xmas presents and then working the shop which again has
been busy.
I have been tired and achy again today but moving and keeping going and the
amount I have had to drink today has really helped, but sitting here writing
this blog I am noticing it creep back in. So will head off to bed shortly
and see if I can sleep my way through it.
Tomorrow again is another busy day with a visit to BASIC
http://www.basiccharity.org.uk/ which is a charity for Brain and Spinal
Injury. Its only round the corner and I want to get involved down there so I
have an introductory meeting with them at 12.30pm.
They have different classes, relaxation etc and a Gym that is monitored by
professionals. It might be nice for me to be able to use the facilities down
there with other people that are in the same boat with me, as at the moment
the only people I speak to about my illness are ether my friends and family
or the hospital on the few occasions I have had meetings with them, I rarely
speak to other people in the same situation as myself.
It's a bit like hiding my head in the sand about my illness but that's just
the way it is, I'm happy to discuss it with you if you ask me questions etc
but wouldn't normally bring the subject up myself other than when I am
making fun of it - which is my way I think of dealing with it all.
Some people have asked how can I be so blasé about the fact that I have
possibly got 12-18 months to live, there is no real answer to that question,
at the end of the day what can I say - yes it's a bit of a shitter that my
time could be so short, but like the surgeons have said there is a lot of
good factors going towards me - my age and fitness etc and that the figures
for the treatment are very poor so I have every chance of surviving this for
more than this time.
As the weeks go on I am slowly thinking about the future and what it could
possibly hold.
I have looked at a funeral plan, but I haven't decided what I want yet, I
know it's going to be my last performance so want it to be just right
I have thought about Mark and what he will do when am not here - we often
laugh that it will be me getting phone calls from the police station saying
that they have picked him up in Tesco shoplifting etc wearing a big Floppy
Hay at the age of 70 - that's our plan you see - he goes slightly erratic
and I go sort him out when were older. Obviously this plan has now changed a
little bit, and I'm doing erratic and odd things and he sorts me out.
Back to treatment tomorrow though, which brings me back to the start of my
final 9 days. And hopefully the start of a long time in recovery.
Anyway am off to bed
Till tomorrow
Love you all
Steve
Sunday, 21 November 2010
Saturday, 20 November 2010
Sales....
personally.
The sales from the shop are really starting to come in now and my visit to
the post office on Monday may be spread over 2 or three trips. The gut will
really think am odd or I fancy him lol.
The shop doing well has really given me a boost and has given me the urge to
do more, so over the next few days you will see lots more products on the
Facebook group http://www.facebook.com/?ref=logo#!/group.php?gid=57127533950
The other good thing about the shop being busy is that it it keeps me going
through the day, back and forth to the store room and back and forth to my
desk to collect the printouts and then back and forth to the post office.
The keeping moving part is especially important as it helps to combat the
fatigue that is now setting in, and I have really noticed it today.
My whole body aches if I stop and do nothing, so keeping going, although its
hard it does help - so does drinking lots of fluid - I have turned into a
right tea belly, and must have had about 10 cups today, must remember to cut
down on that one.....
Mark has almost finished the curtains for our lounge, its been his mission
to get the lounge decorated before I started to become ill with the
treatment so that I could go in there and relax when I wasnt feeling so
good, but we just have had so much on that its taken longer than expected.
The curtains are now almost done though now and once these are up, a few
little bits left (like me putting the surround sound in) and a few pictures
up and its done. I love Mark for doing all the hard work on the decoraating,
and I know he will benefit from it too, but he's done it for me to make me
feel good.
All this has to be done before next week though as we have to start thinking
about Christmas, and putting up the tree's. Now normally they wouldnt be up
so early but we have visitors at the start of December and they would like
to see the tree, and being as it takes over a week to get out, set up and
decorat and then tidy aftarwards we have to bring the whole process forward
a couple of weeks.
This is another thing that will keep me going, as I love the house all
decorated for Christmas, we have two tree's and the spiral staircase becomes
another tree of sorts, every surface is is covered with Christmas, the oill
burners are burning the Christmas aroma - its amazing and am really looking
forward to it.
I now only have 9 sessions of radiotherapy left and am looking forward to it
ending, as much as I know its good for me, I will be glad to see the back of
it, although if I have to go for another session, I will, as it gives me the
best oppertunity to fight the battle.
I spoke to someone today whos father is also on Chmotherapy, but its
obviously an IV treatment (needles and drips etc) and they have had really
bad reactions to the treatment, im fortunatet that touch wood I havent had
any issues with the Chemo, and have managed to settle into a routine that
allows me to work through the day and work with the treatment. I'm just
hoping that this is a good sign that the treatment is being effective and
that I can beat the cancer instead of it beating me - although I know it
will ultimately beat me, if I can give it the runaround for a few more years
and manage to loose it then the better it is for me.
Right I need to go to bed as im aching and tired, and I feel tomorrow is
going to be another busy day, I still have to make the bed too, as I did the
laundry too today (like I do most days, I really dont know where it all
comes from).
Anyway till tomorrow
Steve x
Changes
I'm now tired and my body is starting to ache with fatigue
Luckily I only have a 9 sessions to go and then am a few person. No more
daily trips to Christies.
The last few days have been strange as things with different people have
been ironed out - the issue f pressure and crowding has now been addressed
and everyone feels a lot more comfortable, me especially.
I have had a busy two days, and have been a lot more focused on what I have
been doing. I have managed to do loads of work for the office and have
actually managed to stay at my desk and my inbox is now empty - im sure it
will be full again on Monday morning....
The shop is going well and we have finally managed to get new pictures of
stock onto the Facebook group http://www.facebook.com/?sk=messages
<http://www.facebook.com/?sk=messages&tid=1456591622405#!/group.php?gid=5712
7533950> &tid=1456591622405#!/group.php?gid=57127533950 I no longer have an
issue about selling all my costumes and see them simply as stock. A few of
my costumes have gone to close friends, and am happier knowing that they
will be worn rather than stored and go to waste.
There is still loads of stuff to go on there so will keep us both going for
the next few weeks.
My visits to the post office, which is both needed for the sales and my
daily outing are becoming more regular and on some days I have to go twice,
or as earlier in the week three times. The guy in the post office thinks am
running some dodgy scam or something am sure.
Today I realised how tiring travelling to Christies and back can be. The
treatment appears to be the easy part of the process, but the majority of
this week the treatments have all been delayed by a minimum of 45 minutes.
This doesn't help when you turn up 30 minutes early, sitting in the waiting
room just draws the energy out of you.
This is one area where I really do feel sorry for Mark, all the driving,
even though it is only 8.5 miles away, it can take an hour each way. But he
wants to do the journey every day as its our time together - sad I know but
we have some really good conversations just the two of us in the car, it's
ike the conversations we had whilst travelling to a gig and back again, bit
like a mobile lounge, just with less candles and no access to the toilet....
Yesterday we also sorted out the piles of Christmas presents that we have
bought. Those people that know us will know that were usually really
organised and by now are almost completely bought up for Christmas, well
were not far behind and have only got a couple to buy for but there is now
very little time so we better get our skates on. Am looking forward to
Christmas this year, and have vowed that it will snow on Christmas Day - I
dug the snow machine out too so I know it will.....
Tomorrow I'm going to have a full day working on the store, and will see
what stuff I can get on. Once it's all on Facebook, I can then put it on
eBay, so plenty to do. Ark is going to finish the curtains for our lounge
and then we can get these put up, I must then fit the surround sound and
make sure all the cables are hidden away, I have been doing it for weeks,
but don't ever get round to it.
Anyway my legs are aching and I should be in bed.
Will update tomorrow.
Steve x
Wednesday, 17 November 2010
Not Holiday
one day.
Long day - We were up early to collect friends from the airport, they went
on the holiday we were supposed to be going on - we would have had an
additional week to go yet but hey ho, things were not supposed to work out
that way. We would have loved to have gone with them especially after seeing
their holiday pictures, but my treatment was priority as have said before.
Good Day - it's been good in the respect that everything I wanted to achieve
I have done, and now have a new to do list for tomorrow with only two items
on it (although one of them is only to put jacket potatoes in late in the
day for dinner) I like days where I get things done, and wish every day was
like today. I want to photograph some stock tomorrow so will get all my
little chores done first thing then work on that. Today at the hospital was
Doctor day, where I meet with the Oncologist. It's just a basic meeting with
to make sure am al ok, and that I don't have any issues., Another positive
tick on my daily good things list.
Weird Day - weird in the respect that although I know inside my head I am
ill today its not been an issue. I haven't had any symptoms other than my
bald head that have bothered me, today I haven't been fatigued it's been a
normal day, a day I could have gone back to work, a day I could have done my
normal life...
Not good day - Today I have also had words with someone very close to me,
that have been taken not the way I intended them to be, this has hopefully
all been sorted now as my intentions were not to create the scenario that
has arisen. One thing I have to realise is that my illness doesn't only
effect myself, but others too, and that they too can have good and bad days.
I know in part I have to be selfish and look out for myself, but sometimes
when people are looking out for me too, even though I may think they are
doing my head in, crowding me, or making decisions for me that what they are
doing is right and I should go with it.
I think I might ask my father in law to build me a soundproof booth in the
garden, and it can be used by myself and anyone I know to go and vent and
scream in, just get it off your chest and then everything will be back to
normal again.
The other bad thing was I had to wait over an hour and a half for my
treatment today at the hospital, one downside of having my treatment later
in the day is if there is an overrun on any of the treatments during the day
it all rolls up and ends up in me being delayed. I just have to sit with
Mark and wait, but this is one of the most tiring things of the whole
process the waiting. Still I can't complain it's all for my benefit in the
end.
Will finish by saying those people that are close to me, and they know who
they are mean the world to me and I know I might say the wrong thing
sometimes, it's not intentional but my excuse is simple - I'm human and
sometimes my emotions get the better of me and things come out wrong, I
haven't had training on how to handle situations like this, I wish sometimes
I could go on a course to understand what's going on and how to deal with
it, but these don't exist do they, you just have to work at it and carry on.
Love you all
Steve
Hair today, gone tomorrow....
http://sphotos.ak.fbcdn.net/hphotos-ak-snc4/hs1163.snc4/150582_457233192044_
580802044_5962637_8142794_n.jpg
I know what you're thinking...
I'm thinking the same thing, I look like my dad.
I have made the conscious decision to crop all of my hair since it started
to come out because of the radio therapy, I can't stop that, and it was
going patchy all round the back and on the right hand side too.
At least if it's all short then there is no problem with it coming out, as
it looks all short anyway, I just look a bugger with short hair, who knows I
might actually wear my wig more now, or more hats will be purchased....
There is so much to update for today but I am so tired I will do ti tomorrow
in a mega update.
Steve
Monday, 15 November 2010
Choices
Yesterday was a bit of a hectic day and we managed to fit a lot in.
We started the day with a trip round the warehouses looking for a new product range that will be revealed soon. Fun and practical is the brief for the product so your going to have to wait till its launch. But everyone is going to want one or multiples of them.....
One part of yesterday I didn't enjoy though was as Mark would put it. "My Wobbly" in the shop. I can't even remember what was said now but it all boils down to the fact I feel like the majority of my choices and decisions have been taken away from me
Mark said his bit, I said my bit and we cleared the air. I shouldn't have had a go at him, but he's the closest person to me and unfortunately has to bear the brunt of my "Wobblys"
Going back to choices and decisions. Some of this cant be helped. I do have to eat at certain times, I do have appointments every day etc these u can't get out of. Its the smaller things like when people tell me I can't do that because am tired, or don't let Stephen do that because he shouldn't be doing it.
Stephen knows when he's tired and will sit down rest. I know my limitations and these are changing every day.
Whilst I am not ill I wish to carry on as normal. Or as normal as my life has become anyway. For example today I have done work for the office, been to the post office, done some chores and crossed off the majority of my to do list. I'm currently writing this whilst waiting in Christies for my treatment, will probably finish it in the car on the way home.
Today has bEen a good and productive day. And because I have been moving I haven't ached as much which again is a good thing.
This evening again is busy. We have friends from southport coming over to say hello and then we get the photo's back from last weeks photo shoot. All this takes time though.
There doesn't appear to be much time for us at the moment and a lot of our time is occupied by other peoples demands. These demands have always been there but we have always had an excuse be it Trouble - were working etc or something along the same lines, and people accepted that too. But now that Trouble has been retired off (albeit temporary as far as I'm concerned) now we haven't got this excuse were finding that a lot more people are demanding our time. and we haven't got an excuse to get out of it. I know that sounds awful its not intended to sound that way.
I understand because of my diagnosis and such that people do want to spend time with me, but this is different to how it was pre cancer. I would like to keep to normal and all these extra visits are out of the norm. I do appreciate the visits though in the same manner.
Anyway on a lighter note...
Mum I want to do a poo at Paul's... This appeared to be the phrase yesterday (its off the glade advert) as most of you will know because of some of my medications I have been unable to go to the loo. Yesterday though everywhere I went - I went if you get my drift.
Anyway will update more later.
Steve x
Sent via the Trouble BlackBerry®
Saturday, 13 November 2010
ebay
Our dressing room is slowly becoming more like a shop, as items go from our
personal things to sale items. The washing machine will be going into
overdrive in the next day's washing some of the costumes before they are
photographed. eBay has become my new home page as I work out what is going
on there and what to charge (I must admit to bidding on a few things as
well)
The treatment is slowly starting to make its presence in my life now, not
only in the loss of my hair on the left side of my head, which is now
getting to be a bigger bald patch, and its bloody itch, think sunburn and
your half way there. I have cream that I can apply but it still itches.
The aching and tiredness are also becoming a permanent presence too. The
aching can be alleviated by keeping going, and drinking plenty of liquids,
I'm constantly attached to a water bottle now, as I drink loads during the
day.
Tomorrow is another busy day as would like to pop to the warehouse for a new
product range and then off to my mum's for dinner.
I have felt good today, and want to continue this way.
More to follow tomorrow.
Steve
Smile
Well today has definitely been a good day.
Managed to get my work done for the office this morning before a friend
arrived and we discussed a few ideas for her partners business, which we
have learned by running the Trouble Business. Simple ideas that often get
overlooked but are the simplest of things and make such a big difference.
Have also been to the post office with my ever growing eBay sales. These are
starting to roll back in again after a little time of inactivity. The best
thing is, the more sales I have the more I want and the more energy I have
to push the sales and get more listed. A friend I spoke to yesterday told me
that they are now turning over £20k a month on eBay so it can be a viable
business opportunity.
This afternoon my mum came down and took me out for the afternoon, we went
shopping before my treatment to a local shopping centre and picked up basics
(Hand sanitizer, cat food and juice) and then we headed off to Christies for
my treatment.
After I came out of my treatment there was a grl roughly my age who was in
with her Nan. She was on her second Radiotherapy session and was having
major issues with it, o be honest she was petrified. She explained that her
Nan was going into the treatment with a CALM nurse and that they helped her
through the experience.
I explained how it was from my perspective as our treatments are very
similar in respect of the mask etc. and explained that it does get easier,
and the thing that becomes the issue is the waiting for the treatment and
the travelling, as you know once you enter the Radiotherapy Suite you are
generally out aging within 10 minutes, it made them both feel a little
better that they had spoken to someone that had actually experienced the
treatment and the nurse with them also agreed with everything I said.
This also made me feel much better that I am also able to help someone else
overcome the fear of the treatment that I had to overcome myself.
I'm now on a countdown of the number of treatments I have left as I have
completed 16 Radiotherapy sessions now and have only got 14to go all going
well. There is signs of my treatment showing more though now, im bald
completely on the left side of my head in a large patch over my scar area
and the hair on the right side of my head is starting to fall out and go
thinner, this is to be expected.
I also get very achy after treatment especially towards the end of the week.
I found that by taking the advice of the nurses to keep a high intake of
liquid that this helps with the aching and Fatigue. It also helps to keep
meoving sometimes so even though I don't want to go for a walk I go, just to
keep my body moving, and I do feel that this benefits me, even though I
feel tired afterwards, the body doesn't feel as achy, its fir trade off.
After treatment we went to the Trafford Centre to do a little Xmas shopping,
we picked up a few nice things and have now sorted two presents that I
needed to get.
All in all a good day and now have a weekend free of Radiotherapy so just my
Chemo to take but this fits in with my day anyway.
Ready then for Monday when it all starts again.
But I have a full weekend to occupy myself with yet so what mischief can I
get upto? Will only know tomorrow.....
Till then
Steve
Thursday, 11 November 2010
Tired
morning I struggled to get myself motivated and even the littlest of things
were hard work. This is really the first time that I have experienced this
feeling for a full day. It got slightly worse after my treatment this
afternoon.
After my treatment today I had the usual fuzzy head and pressure behind my
left eye, this fades though after a couple of hours. Today though it's all
faded as usual but it has left me very tired. A good night's sleep should
help me out though, I'm glad that tomorrow is the last treatment of the week
though. I'm now half way through my entire course so that's a good thing.
I also managed to do a little bit of work from home, I'm just limited in
what I can do because of my machine. But the little bit that I can do gives
me some reason for every day - its mad that we all complain about going to
work every day and would like give up work at the drop of a hat. My choice
in the matter was made for me because of the illness and its now almost two
and a half months since I have been officially been in the office, its mad
but my whole day has been disrupted by nit going to work, and my normality
has been turned upon its head. The work I do now from home with the help of
work, helps me retain some of this normality, and I would like to thank work
for being accommodating in the issue.
Tomorrow I'm going out with my mum for the afternoon, nothing planned just
as yet but have to have treatment at 4pm so who knows what we will get up
to, will just be nice to be out with my mum for a couple of hours, it also
gives Mark the afternoon off and he can do whatever he wants to, its good
that he has time on his own too, although I do enjoy spending time with him,
even if it is just travelling to the hospital and back.
Will update tomorrow with what I get up to.
Steve
Wednesday, 10 November 2010
Wash and went....
started to come out on the other side of my head too today, I did remark to
the Oncologist that I expected it to be a gradual loss, and she said thats
not always the way... oh well.
I wore my wig all day today, including to the office where I have been in
and done a little work.
Nobody made an issue out of the fact I had a wig on, it was actually me that
made the first joke about it, to break the ice.
I really enjoyed going back into the office today, it provided me with a
little bit of normality, that and I got a load done as the PC was so
fast....
Have said as long as am able will go in and do more next week.
Nothing else to update though now, so will sign off and have an early night.
Steve
Just before Bed
from my head.
<http://www.facebook.com/photo.php?pid=5661691&id=580802044>
http://sphotos.ak.fbcdn.net/hphotos-ak-ash2/hs469.ash2/74284_453193022044_58
0802044_5924118_958098_n.jpg
This is the result, I now have a huge bald patch right over my scar area.
I'm OK with the hair loss, as it's all for a good reason, and the treatment
I am receiving will hopefully help me to be here for a lot longer. Its' just
odd that its gone from no hair loss yesterday to a huge bald spot today.
I have decided to go into the office tomorrow for a few hours, I have said I
would do, and it also gets me out of the house and gives me a little bit of
normality to my day, and would like to do it every week if possible.
He one issue I have now is, do I wear my wig, or a hat to hide my baldness.
I know the guys in the office will be OK with me wearing a wig, and that it
will actually be me that makes a joke out of my wig before any of them do, I
think that way there will be no issue.
Will decide in the morning.
Anyway am off to bed
More tomorrow.
Steve
Tuesday, 9 November 2010
Hair
hair because of the Radiotherapy.
I noticed that my dressing gown was covered in hair on the left side when I
took it off this morning, and then when I went to scratch my head a little
later on a full clump came away in my hand. I will now consider cutting my
hair very short so that the bald patches are not as obvious. That and I now
have my wig on standby if I wish to use it, as well as my new vast
collection of hats too.
Will update later fully.
Steve
Monday, 8 November 2010
Hmmm
Back to treatment, this afternoon, but it all started this morning.
I just can't focus on anything today, and have done loads of little random
things to try and jolt my mind into something. I don't think it's a side
effect of the treatment, but more of just one of those days where my mind
just isn't where it should be. I had these days before any treatment or
illness so will just put it down to "one of those days"
Today has also been a busy day since going to Christies. Have arranged to
meet with friends this week, have made an appointment for BASIC as we didn't
realise that you cant just pop in you have to make an appointment to see
them, and they are busy so the earliest I can go is the 22nd. This is good
as I was going to pop down there on Friday with my mum.
My treatment today was as it is every day, however it does appear to have
drained me out this evening, and will be going to bed right after Corrie
(Jack leaves so has to be watched as apparently Vera makes an appearance
too....)
Tomorrow a friend is coming over to look at a load of costumes that he wants
to take back to Gran Canaria. It will be odd to see them go, but I know they
have to, both for my own sanity and for the space for my new ones when I get
through this. I have already seen a couple of pictures of someone else in
one of my costumes, so it will get easier.
Nothing more to mention today - so will sign off and say see you all
tomorrow.
Steve
Sunday, 7 November 2010
Weekend Over
It's been a really odd weekend with various things going on that have made
me think.
Sunday was All Souls day (I think that's right) and is a special service at
Church where the people that have died in the last year are remembered. My
aunt lost her battle to Cancer on New year's Eve last year so we were all to
attend this service.
I was happy to attend the service, and was a good opportunity for me to meet
a large proportion of my extended family and look healthy.
However on the day I sat and thought about what the service was about I
decided I no longer wanted to go.
I wasn't emotionally ready for all the family who would have been very
supportive but also very fussing. That and the service itself, it could be
that my name is being read out on that list this time next year, im not
ready to think about that, especially after my thoughts of funerals this
weekend.
Someone has left me a message on my log about my wanting to organise a
funeral. They have said exactly how I feel, that once it's done its done,
and that it will be done my way.
Am back to treatment tomorrow, and this is the week that I should really
stat to notice the effects, as they say that treatments 10-20 are when
things start to kick in if they are going to affect you, well tomorrows
treatment is number 12 so who knows. I know that the tiredness is creeping
in much more now and that I still have slight headaches. I'm ready for
whatever is thrown at me though and know its just something that I have to
endure if I wish to have a chance of survival.
Overall its been a rollercoaster of a weekend but I'm fine now I'm bigger
and stronger and am able to handle these off days.
There's a lot of fight left in this old Queen yet, it just takes a little
persuasion to make it go sometimes, just like an old TV (no pun intended)
you have to switch it on a couple of minutes before you want to watch your
favourit TV program to allow it to warm up.
Who knows what tomorrow brings,
Only one way to find out, and that's to head off to bed and wait and see.
See you tomorrow.
Steve x
Saturday, 6 November 2010
With a bang....
I don't like fireworks at the best of times, call me miserable and such but I just see then as a waste of money and a noisy thing that lasts for weeks. Also one of our neighbours tries to blast his house into orbit every year with a commercial standard display. It just makes my ornaments rattle (in more ways than one)
The other thing about last night was memories. The last time I was stood on my doorstep was new years eve of last year. I was drinking a glass of champagne to my aunt Val that had sadly lost her battle to cancer that dat.
It got to me slightly and I ended up in a strange mood afterwards when we went to bed.
In bed I couldn't sleep, Mark was snoring, my legs were aching and restless and I just couldn't settle so I ended up trying to occupy my mind on eBay and by some odd internet advertising fluke I ended up looking at planning my own funeral.
Now I have no intention of going anywhere yet but know that my funeral being within the next few years is a possibility.
I would like to plan my funeral and not leave the burden to family and also to ensure that its done the way I want, after all its the last finale I will ever get to perform in.
That's something I have to think about now though as at present with all the songs I would like played its going to be a week of a funeral and the catering will have to be done in rotation.....
Anyway back to today, we have driven down to Lincolnshire to collect a chais lounge that Mark bought on eBay he will be doing it up and either selling it or it will fit into the house somewhere. On the way back we stopped in Leeds to do a spot of christmas shopping. We haven't bought any presents for anyone just a 5ft candelabra for us. Oh well....
Now were off to my mothers for a takeaway to finish off the day.
Who knows what's in store for tomorrow..
Steve
Sent via the Trouble BlackBerry®
Friday, 5 November 2010
Tired
treatment.
I noticed last week that on the Thursday I was a little more tired than
normal, and that the Friday was a hard day to complete, I have been told
that this is to be expected as the treatment builds up in my system. I was a
little refreshed by Monday. However today I have noticed the signs again and
am expecting tomorrow to be a long day.
I have now completed 9 sessions of radiotherapy and have another 21 to go,
the travelling is starting to take its toll on me as is all the waiting at
the hospital, but is something I have to put up with. Medication wise
everything is running smoothly and am in a good routine for taking the Chemo
at the appropriate times. I'm sure though if you pick me up I will rattle
with the number of tablets I take...
Had a meal out tonight which was good but I think I ate too much (I know I
ate too much) and the mammoth Mixed grill was simply far too much for me, I
must admit to leaving half a sausage though which is bad form in considering
how much I actually ate, I'm sure I could have squeezed it in somewhere, we
then went from there to friends who offered us food, but we had to
graciously decline....
We have just got back from delivering three of our wigs to their new home
(two of mine and one of Marks) now it's always been our rule never to lend
anyone our wigs as they are our image but now that things have changed and
everything is going its odd to see someone else in our costumes and wigs
etc, it's also flattering that people would want to own them too. Still very
sad though that this part of my life has come to an end because of the
illness, but like I said before, when I come through the other side we will
have bigger and better costumes, and this is just an excuse to clear the
dressing room.
Nothing much else to mention today.
More to follow tomorrow.
Steve x
Wednesday, 3 November 2010
A new Hairstyle
think.
The shop is going well, which ic good, and the costumes are slowly working
their way to new owners all round the country, this is both sad for me as
they are ultimately costumes made for me but also good as they will actually
get worn again and be performed in, which is what they were made for.
Today have been at Christies for a large amount of the day. First was my wig
appointment at the Wig Room. Now this is going to sound stupid, but I was
very nervous about wearing a wig (who would have though) The wig is only
going to be used to give me a choice when my hair starts to fall out later
into the treatment. This part I am not too particularly bothered about but
my scar will be much more evident and I simply don't want the hassle of
people pointing it out and assuming whatever they like.
The wig itself is not far from my natural colour so is ok in that respect,
however its slightly longer than my natural style so looks different, but
considering in hadn't had my hair cut for the best part of 3 months before I
had it cut last week it was getting long anyway and it looked like that. So
now I have the choice of my wig or the hats to wear, I just need cold
weather now to wear my hats....
The other thing I have been thinking about today is the whole cancer issue
and the fact that there is so much money raised for cancer awareness, it
also annoys me that there is only a very small percentage of this money
raised that is actually spent on research into brain tumours and cancers.
Breast and testicles are all over the place, but the brain, the biggest and
most important part of the body is lacking in funding.
I have set myself a task of helping to raise the awareness of Brain Tumours
and Cancer and will do as much as I possibly can.
This blog is not just published on my blog but also linked on the
http://btbuddies.org.uk/ BT Buddies website. The site is a mine of
information on all things Brain Tumour related, and is run by a very
dedicated team.
The team are a charity and rely on volunteers and charitable donations.
This is where I get on my soapbox and ask for a little bit of help. As some
of you have said is there a charity that you can donate to then yes there
is, please go to their shop on eBay http://shop.ebay.co.uk/btbuddies/m.html
and buy something from them, so your doing your bit for charity, making me
smile and helping your retail urges all in the name of a good cause. Were
all smiling.
Something somebody said to me today is that I am an inspiration and that I
am so brave facing the news I have been given, my only response was that I'm
actually shit scared of the future but I have two choices either stand up
and fight and see where it gets me, or sit back and let this thing eat me up
inside and everyone around me. I'm not like that, I'm going to make a lot of
noise, be cantankerous and give this thing a run for its money. But I
suppose I do look at other people and see them as an inspiration so in a way
I suppose I am, it depends upon how you see things.
If you see me as an inspiration then good, im glad I am giving you the will
to go on, just like the people I look up to and make me want to carry on.
Together we can get through this, together we can beat this, Together we can
be strong.
Anyway that's enough of me ranting on, I'm going to organise a charity event
or something to work off the tension, who knows Miss Whiplash and Bobbie
Dazzler may make a Special guest appearance.
Steve x
Tuesday, 2 November 2010
Holiday
Three weeks in India, has been booked for us since early March of this year.
But unfortunately due to my illness diagnosis, this had to be scrapped. The
choice was simple really. Go on holiday and probably no see Christmas, or
stay here, get the best possible treatment I can, and fight this thing.
There really isn't much of a choice is there.
For myself and you guys all around me I chose to stay and fight, and fight
is what am going to do.
There will be plenty of time for other holidays next year when am better.
This whole thing has made me think of some of the other choices I have had
to make in my life, and the choices are simply easier to accept and make.
Its amazing how life changing this whole thing has been.
Steve
Monday, 1 November 2010
Hmmm
happened other than tiredness is becoming a major part of my life now.
Saturday was the visit of my sister in law and her husband, which was nice
as we only get to see them every few months as they are from Norfolk (or
that's where they live at least)
Saturday night was dinner with friends in Wigan - Jamaican delicacies - it
was lovely, and the conversation brilliant too, was nice to go out, not get
blind drunk (who would have thought me not getting blind drunk would be a
good thing....) and hen leave at a reasonable time.
Sunday morning was a bit of a slow start though for me as I was aching all
over - like I had run a million miles. I managed to complete the day though
as had loads to do.
Sunday afternoon was the photo shoot that I wanted with Mark and all four
parents, The photo shoot will be a reminder of good times when I don't feel
very well as the treatment gets further underway.
Today has been another of those days where the treatment is starting to kick
in. My body aches and is tired, and doing the smallest of things takes just
a little longer. I have not had any sickness though in the last few days
which is certainly a positive, and my appetite is at the moment unaffected.
The week ahead is looking really simple, just normal day to day items,
taking my exercise which I am intent on doing, although it's only walking to
the post office and back and my treatment.
Early nights are something that are becoming more of an option now too,
although I do struggle to sleep when I get there as I become restless, that
and my brain is slightly confused as to why I am in bed at such an early
time.
Tomorrow is the day were also supposed to be going on holiday to India. We
have been looking forward to the holiday since early March when it was
booked. Unfortunately because of treatment and the timescales involved we
have had to cancel.
Two of our friends who were going on the same holiday are still going
though, which we are OK with but it's still there that were supposed to be
going too. Were taking them to the airport though and waving them off. We
hope they have a lovely time and bring us back the goodies they have
promised (a stick of India Rock, and a Straw Elephant.....)
Tomorrow is another day (although it will start early because of the Airport
run, but tomorrow is going to be a good day. Every day no matter what is a
good day, and being ill, down or just not wanting to do anything - I have
to keep thinking positive and keep going forward.
Anyway enough of the PMA soapbox.
Just wanted to finish by saying thank you to my Partner Mark, and my four
parents for being so supportive over the last few weeks. They all do their
own little bit, and perform a little something in my life each day even
though they may not know it. I love you all.
Steve x