Cancervive diary
The Big CRecently read...
I've recently finished Angels and Demons by Dan Brown - not my normal sort of book but it was recommended and I'm willing to try anything once and do you know, I really enjoyed it, couldn't put it down. It went to hospitals, Doctors, in the car, everywhere. I was concerned it would go over my head and I'd get lost but my brain cell coped well with it.
Now you know those amigram pictures in it...well look at this then. OK then, I didn't do it, a good friend, Phil did it for me. I was having a particularly bad time and he made me smile and cheered me up. I now have MY own personal ambigram. Very clever... I'm impressed...! :-)
My own personal Ambigram
courtesy of Phil....thanks!
11 december 2006
birthday girl....!
Wahoo - another birthday here...! I don't particularly like the increased numbers but to make it to another one makes me a happy bunny...or should I say monkey :-)))
Talking of monkeys you should see this...yes I had a monkey shaped birthday cake as a surprise....I'm not normally a chocolate cake type of girl but this is delicious. We still have some left and yes, I had his little button nose, bless.
I wish I could share it with you all but sadly I can't send it virtually to you.
My Monkey shaped birthday cake - he's SO cute -
it was a real shame to cut him, but my brother made me do it...!
I would like to say a BIG thank you to everyone who sent me birthday cards and best wishes, both real cards and virtual ones. They are all lovely and really made my day special, so thanks. I seemed to have loads of cats and monkeys for some strange reason too...you all know me so well.. ;-)
My plans for the day didn't happen as planned though but I did have a special day anyway. I had texts during the day saying "Happy Birthday" - it's nice to spread it out a bit. I even had a day out with my good friends Pat and Dagmar yesterday - sort of birthday/christmas celebration together. We had a good laugh as usual. You can't beat humour can you?
I had some wonderful birthday pressies, one from my good friend Lyn was so much fun. Whilst with my other friends Pat and Dagmar I said that Mum and John are not 'birthday' type people and I am so it's a bit disappointing sometimes. I am still a kid at heart and Pat told me to stay that way forever, it's such a nice characteristic to have....so I've been right all these years and now I will never grow old...not in my mind at any rate.
Anyway, this pressie, it was a "Grow Your Own Christmas Tree" - I had magic water, baubles, a gold star, glitter.....I opened the magic water and put it on the tree. It said it would grow immediately so I sat waiting like a 4 year old....here's the photo of the tree with it's magic water on and baubles ready!
The magic tree with magic water on,
waiting for something to grow...
One hour later and I was still waiting....I put it on the table, with Santa waiting for something to happen. Talk about a kid getting disappointed.....so in the end I had to leave the tree and go to bed....
Then look what happened.... !
The little magic tree grew overnight and
I missed it....so pleased it grew though... :-)
Amazing!! It had grown overnight, I think the fairies had
something to do with it!! I could now put the glitter on and it's amazing!
I still don't know how it works, but then that is the magic part I suppose...!
LOL!!!
12 december 2006
nhs blog doctor article...
This was taken from the above website. It is now, it is current, and it is VERY VERY SCARY!!!! You all know the problems I've had with consultants in the past who do NOT like you to research your own disease and, horror of horrors, ask them questions...specially when they can't or won't answer them!
This is from a medical student, a young person, who is concerned that patients are researching their disease and daring to ask questions.....well...whatever next?!?!?
NHS BLOG DOCTOR is reaching the far-flung corners of medical schools. We have just had an anguished e-mail from James, in he which says:
“What do you do when you are corrected in a consultation by a patient who has researched their condition at the library, or on the internet, and wants to“improve” on their management. It’s not right is it? I didn’t know how to cope"
Oh! The cynicism of modern youth!
The explosion of information technology over the last twenty years has enabled everyone to research and understand all sorts of arcane specialist areas. Very soon we will not need professionals at all. Everyone can be an expert.
Dr Crippen is enthusiastic and supportive.
When the medical students are concerned about this, that is the time for us (as patients!) to worry. As I've said before Knowledge = Power and it's only by asking questions that we find out what we need to know and how to approach our illness being secure in the knowledge that we have tried our very very best to get the best (and sometimes only!) treatment available, no matter where in the world we have to go to get it.
I can only say I hope he is in the minority - James - wake up and smell the coffee - you are young enough to change your ideas....so get moving!!
13 december 2006
tact christmas bash...!
Tonight is the Christmas Bash for our Cancer Network User Group. I'll take my camera and if I get any good shots I'll post them here for you all to see. It's no alcohol for me, only Apple Juice or non-alco stuff, but I still have a good laugh - you don't need alcohol to enjoy yourself.....I'm mad enough to anyway!
I'll have my own personal chauffeur (John) to take and collect me so all I have to do is have a good time...!
Speak to you all again tomorrow ;-)
14 december 2006
the mri date has arrived....now problems start....
OK, so I have now received the MRI scan date which is a plus point. Now the negatives start. How easy SHOULD it be to get transport arranged to hospital? I've been going on transport for a while now so it should be easy. LOL!!
I phone the number on the letter and get through to a thoroughly fed up operator who says I can put you through to transport but they are engaged, do you want to hold. No problem says I, preparing to wait a long time if the normal procedure is followed.
I finally get through to transport only to be told "I can't do that - you'll need to speak to the Consultant or his secretary". Now WHY is there a transport department who can't arrange transport? Also how do they expect you to get through to a Consultant? Has anyone tried that? Correct me if I'm wrong but are they not normally with patients? Either that or in private practice making oodles of money every ten minutes!!! (Don't forget I've seen both sides!!).
Anyway I ring the number again (no one will put you through in the same hospital, you always have to dial again for some unknown reason).
The phone stops ringing and ...yes...you guessed it...an ansaphone. "This is Mr X's secretary. If you want to speak about Outpatient appointments call 123456, if you want to arrange blah blah blah. The secretary cannot arrange any appointments or change details. Please leave a message after the tone". Beep......
So I leave a message. In the past I have emailed and left messages at various hospitals and NOTHING is done and NO ONE gets back to me. It's like talking to the man in the moon.
So we shall wait and see if anyone gets back to me. The last time I made an appointment with them I had to go back to my GP and ask him to contact the hospital as I was a new patient. Now this is with a hospital I have been going to for at least two years and I am not a new patient but somehow, don't ask me how, they said I was and I would have to start at the begining and be a new patient.
After many phone calls and letters and fax filling and sending and more waiting it was finally arranged. Mind you in the end I had to go across London for a ten minute appointment which couldn've been done at my last appointment in Bolsover Street anyway...arghhh! It wasted everyone's time and of course, NHS money. It beggars belief sometimes but hey we have to do as we're told and follow the red tape instructions. No wonder the NHS is in deficit to the tune of £512 Million.
Anyway rant over, I feel better now. I've got to get to East Surrey Hospital this afternoon now for a Haematological Tumour Group Meeting. Such a life being a patient. However it's good that we are being recognised as people who can help. In our local Cancer Network User Group our help is being requested which can only be a good move can't it? After all, without us patients, there would be no Consultants, Doctors, Lab Scientists, Phlebotomists, Nurses. One however cannot do without the other.
Now I know that this has been a bit of a rant, but if you read back through the diary (or blog as they're now called!) then you will see WHY it gets so annoying sometimes. It's a catalogue of disaster at times but at the end of the day I am still here due to the knowledge and excellent skills of so many wonderful medical professionals and for that I am truly thankful :-)
Keep smiling everyone....ever the optimist :-)
UPDATE: See ever the optimist and it worked...! I just had a phone call and many details given later, my transport is all booked for the MRI scan. One more thing, I've now noticed that it's the same day as my Lymphoedema appointment so I'll have to change that now....easier than waiting for another MRI scan....oh the joys and challenges of daily life...!!
UPDATE 2: Pauline you are an Angel...!! At least there is someone who knows what they're doing!! Have a lovely Christmas at home and see you in the New Year...! =)
16 december 2006
belated birthday celebration
Well, after a bit of a bad weekend last weekend, it was late, but there nevertheless...!! We had a gorgeous meal out in Windsor, not been there in a while and it's all been redecorated in a 'contemporary style'. The service has improved a lot too!! Perhaps I should start a 'restaurant review section' LOL!
Mum and John don't really 'celebrate' birthdays as such. I think in a different way, and sometimes wonder if the wrong baby was taken from the hospital, in that I like to celebrate birthdays and christmas. With cancer, it changes the way you think, you don't know how long you're here - I know others don't either - but I somehow think we're gonna have less time on planet earth than the rest of you guys. Just my own personal thoughts on the subject.
Before you all say, be positive, I AM positive, very positive, but it still makes you think about things differently. I've lost too many good friends to think differently. One thing that still puzzles me is that I'm still here and they're not, what am I doing differently to them?? We all fight it every step of the way.
17 december 2006
traditional visit
It's an old tradition in our family that we go to the Crematorium at Christmas. I know it's not your normal place to visit, but we miss them all and like to share our Christmas traditions with them. We take a wreath and card and place it on the fence by the Nativity Scene. We always put some money in the collection welly (yes, welly! it's an old welly boot painted gold - the sad thing now is it is cemented into a paving slab and next to a sign saying "thieves operate in this area, please be aware"). How sad is that in a crematorium?!?!?
It's a lovely crematorium - we all have to go sometime and it's best to know the good ones!!
Anyway enough melancholy - back to a good old larff...!!
18 december 2006
I came across this on the net, have a read and then smile...!
How to Deal with Cancer Patients
From FowlSound’s blog (he’s a cancer patient):
1) If you feel like you should say something about the disease, don’t.
You’re about to make an ass of yourself.
2) If you feel you have to act extra nice, don’t. You’re about to make an
ass of yourself.
3) If you’re afraid to deal with people who have cancer, just say so. You
make an ass of yourself by pretending you’re not shaking in your boots just
talking to me. I’d prefer the honesty, and I wouldn’t cut you down for that.
Cancer patients don’t just fight the disease, they fight society’s reaction
to it too. That’s why we’re the toughest f**king patients in the hospital.
We have to be.
Never underestimate us. When we beat this disease, you’re going to feel
like an ass even more.
Be honest. Be fair. Be yourself. If you don’t understand something, ask.
Don’t just nod your head with an overacted serious look feigning comprehension.
Thank you in advance.
Now didn't that make you smile....there is a ring of truth there too so
remember that part! =)
Oh yes, The Furry Monkey has had a mention on NHS Blog Doctor - just had to say that as I'm a big fan of Dr Crippen!! (I'll have to add my favourite blogs to the site soon, so watch out for that one!).
I also need another four pairs of hands....where has December gone? I missed November and was gonna catch up - not much chance of that now - LOL!!
23 december 2006
guess what...!?!?!?
Yes, apart from the fog, we had SNOW today...! Now isn't that just perfect. Snow at Christmas time...what more could you ask for...I just love it...still a kid at heart you see :-)
As my good friend said though, "don't ever change Karen, it's a lovely way to be in the world today". So I won't, I'll stay as I am...!!
24 december 2006
merry christmas and a happy (and healthy!!) new year to you all...!!!
Sadly the fog has cleared now. I really miss it after four days don't you?!?!? I took a couple of photos and will post them when I download them after Christmas for you. Did you have fog where you were???
Before I sign off for the evening (last minute Cranberry Sauce recipe needed!!) I thought I'd wish you all a Merry Christmas and a Happy (and very very Healthy!!) New Year....!!
Enjoy Christmas Day and I'll be back on here again soon to catch up with you all no doubt.....enjoy...!
Merry Christmas and a Happy New Year
from the Furry Monkey and me!!!
28 december 2006
THE FAMILY TRADITION
Yes, it's that time of year - the time to go to the seaside, just after Christmas - usually when it's freezing cold, raining, snowing, blowing a gale or otherwise with some crummy weather here in the UK!
We went to Wittering - had a very short walk around a few shops that were open and then back to the car to get a lift to the Restaurant...! It's amazing how tired you get just trying to walk. The Restaurant was SO busy but we managed to find a table and sat down to wait. The poor waitress was on her own but doing a sterling job as they say!
This place does an amazing Banoffie Pie, so I just HAD to have a piece. So enjoyable to have something naughty and not worry about it or feel guilty.
Afterwards we went to the beach and can you believe it but what did I see in the sea? No it's not an anagram or riddle. Guess....
Yes, it's surfers - on December 28th off the
English coastline....brrrr....!
This is Chichester Harbour, it's grown SO
much since we first went...our boat is the 2nd on the left...LOL!!!
Looking out to see on a freezing December day!
Looking the other way!
Our traditional visit to the seaside, lovely! It's hard to believe that another year will soon be over. Then it's back to hospital appointments - I have eight in the diary for January alone already :(