fluffynijn.web-log.nl

Well .... here it is .... the blog for my englishreading friends

I cannot thank you guys enough for all your prayers. If you read the whole story you will realise how much they helped!!

may 2006

I'm extremely bad in keeping this story going in english .... the blog in dutch keeps me pretty busy .. so did doctors and hospitals
End of march the doctor decided to stop the chemotherapy and in april I got radiation therapy. That was quite a shocking experience ....
Shocking because it seems to take so little energy ...
I get in the bus that stops in front of our house and get off 15 mins later in front of the hospital where the radiation is happening. (That is not done in "my hospital around the corner", but in the hospital only treating cancer-patients)
And that is one of the strange things ... walking in you know that all the other patients do have cancer and worse ... they know I have cancer too ...
In the smoking area all talk is about cancer .. and that is .. eh .. well .. confronting me more with reality than I like ...
Well ... when I'm inside the radiation department all I need to do is lay down quite comfortable on a table while very nice and friendly nurses make sure I'm in the right position (all nice red stripes they have put on my body need to correspondent with some laserlights from the machine). My position is more comfortable than most breastcancer-patients because I did not have an operation so no trouble to keep my arms over my head .... lucky me
It feels like nothing happens ... I hear some buzzing sound during about 30 secs ... little silence ... again the buzzing sound and in come the nurses again to put a wax-model over my breast. That is needed because I need some radiation in the skin .. the tumor attached itself to the skin ... The machine is made to go under the skin, so they fool the machine by giving me the wax skin
Same procedure, only this time between the 2 buzzes the machine moves and again the nurses to take the wax off ... move the machine a little more and again two times buzzing .... nurses come back to attach something on the machine with a lead model in it for the last portion of radiation (only one buzz this time) ... the whole procedure takes less than 30 minutes, including undressing myself and getting dressed again.
So it is nothing .... but it made me so tired!!

Well ... it was only a month and only 3 times a week

End of april it was all done, all the heavy treatments and it seems I did wonderfull! My doctor even gave me permission to take up drinking alcohol again That was to me the best proof my liver is in excellent condition
Accidently we had nice dinner with nice people the same day and we visited the Mother's Finest concert in the Melkweg. Was a wonderfull way to celebrate that I'm doing well

So now it is only the herceptin once a week. My energy level is getting better and better each day!
I go to hospital for the herceptin by bike and I'm driving around town on my little Vespa

Both radiation and chemo still go on working after the treatment is finished. So when all the effects have taken in the doctor plans to do a CT-scan where she can see what is left of the cancer and where it exactly is. The herceptin will prevent the leftover tumors from spreading themselves and I will get regular CT to check if they really don't.
Just in case (I don't expect that that will happen) there is some growth there is more and other chemotreatment available. So it seems I have no worries for the future

The only problem is that it is getting harder and harder to find a vain for the infuse. They're doing it now in the recovery-room and even there there is only 2 people that can do it. One of them is lucky for me, most of the times I'm there available
On june 7th I will get a new porth-a-cath so than the whole procedure of the herceptin will take me about 1.5 hour.

12 to 14th of june we will be off to a nice hotel for a few days (that was a wedding present from all our colleagues) and after that I will start working again!! That good I am doing

february 2006

Geeezzz .. it has been ages since I posted something here .... Guess nothing much has been happening
The good news is that due to the results of my last echo the chemo has stopped since yesterday Today there was a big meeting with all the oncologists and I will get the results of what they plan to do to me on thursdaymorning ... the herceptin-treatment will continue for the rest of my life ... so I will be in hospital every thursdaymorning ....

Bad thing that happened few weeks ago is that i developped trombosis in my left leg ... so now I need to take bloodthinning medication and have to wear a stupid rubber stocking to keep the blood running smoothly ... They will teach me to do my own bloodtest on the marking of the bloodthickness and do the math on how much medication I will need to take ... and that is a blessing ... I do not need to sit in waitingrooms to get tortured with needles any more than I'm doing now Untill I can do it myself the doctor in hospital is checking my blood on the INR (that's what it's called in dutch) and doing the math on the medication ... and that is very nice of her .. since for trombosis we in the Netherlands have special labs where you are supposed to go if you want your insurancecompany to pay for all that ....is

Idiotic country .... I know ..

the weddig

We had such a wonderfull day
The day before everything seemed to go wrong ... first I got a phonecall from the weddingoffice that the person who was going to marry is got sick and they found a replacement .. she only had 2 hours to prepare for 3 weddings the next day .. and it was pretty early when she phoned so I was not in the right mood to give her all the info I had givven to the original person .... so we decided that she would make something up in her own mind .....

Than Joh called me that she was half blinded working on my wig ... so she is not able to finish it in time ... that was not a huge problem because she allready had made a plan B (the hair for the wig arrived 5 days before the big event so it was too little time anyways). We made an appointment for later that afternoon to visit another wigmaker who has some wigs in stock .....

And at the end of that monday I tried to make a real romantic CD for use in the reception (yes yes ... too late ... I know) that failed to burn properly ... well ... good dutch saying is that all wrongs are in 3 ... so we had had all our wrongs

The visit to the other wigmaker was fantastic ... some wigs in stock?? 2 huge crates went open en upside down so the whole floor was covered in hair in all kinds of colours and shapes ....
I had some on my head ... and we did find a perfect one in very little time ..
So Joh took that home to get in in good shape ... .and ppl ... you cannot imagine how nice and wonderfull it was to feel hair on my head again ... to go with my hands thru it!!

On THE day all the fun started when Joh showed up at eleven to do our make-up ... even Ronald got some on ... just a little to make us look good and healthy on the pictures
At half past 12 we were picked up in a beautifull brandnew huge mercedes to be transported to the city hall of our neighbourhood ... (Maurice, a friend arranged that) and Martin (another friend) was standing ready with the videocam to film us leaving the house and getting in the car ...
The driver was real nice and made sure Martin on his bike would be there before us so he could film the arrival at cityhall too

The arrival was great ... no one had seen my dress (and Enno's mom did a wonderfull job making that for me ) and no one was prepared for Ronald in his jacquet with the nice grey hat that coloured wonderfull with his hair ) so they were all kind of stunned ... which was fun

After the wedding we got transported to the Pulitzer hotel to check in (Other thing Maurice arranged ... he works there and got us a huge discount so we could stay there ... close to the pub (that Zai knows so well ) where we had the rest of the party and NO stairwalking for me so I could use ALL my energy to party without worrying about getting all these stairs to our home up)
I had a little hour of sleep to get ready for the rest of the day

At 4 Maurice picked us up to get to the pub where all our friends allready were gathered and waited for us with a glass of champaign in hand ... we had a drink and cutted the cake and had a wonderfull time

At 6 we went back to the hotel and ordered some roomservice, which was both nice food and a nice rest.
At 8 we walked back to the pub (only 5 mins, even at the speed I walk these days) and found my boss there waiting .. that was the first real golden moment of that night ... he lives pretty far (about 1.5 hour drive from Amsterdam) and works till 6.30 ... so the took the time to wait this long to congratulate us ... i think that is very nice and sweet! (He knows Ronald too ... because he visits me at home to discuss my being sick in relation to work).

The next golden moment was some music Gerard and another friend played for us ... 2 parts they composed themselves and than pinbaal wizzard on violin and guitar ... wonderfull gesture

And the most golden moment was the gift we got from all our colleagues and the way that was presented ... both teams (Ronalds and mine) put all the money they collected together for a real good present and Ronalds most close colleague and mine presented that in a little act ... well ... Jan Marten, my most close colleague is a trainer ... so for him to climb on a chair and say a word to a group of ppl is daily work ... but Ricardo ... who is very shy, doing the same .... well ... I don't think he would do that for anyone else but Ronald
We got a nice weekend out in a hotel in the country ... they chose the only hotel in that line that has a real pub inside .. to please Ronald ... and we have a year to check that in ... so it is not only a nice and wonderfull gift as a nice weekend ... but also psychological ... we have something nice to look forward to ... and there is a next thingy to plan in future ... for cancerpatients like me that is important ... we tend so much to live from day to day ... and forget about the future .....

Besides of that we got spoiled wrotten ... loads of wonderfull gifts ... most in envelopes with nice cards (we asked money ... saving up for a new bed as soon as we can restart doing the house and make a real guestroom of Katinka's room (with our bed), so we do need a new bed

The party ended at 1 .. and i managed to stay till the very end!! We walked back to the hotel and had a nice afterparty, watching some tv, Ronald having a beer and me on some fruit I went to bed and my lights went out till 10 the next morning when i was woken up by the phone telling me they were ready to bring us breakfast ....

Maurice picked us up and we had a fast coffiee and picked up all the presents and flowers in het pub and than Maurice brought me to the hospital ... just in time for my appointment with the doctor ...
My own doctor was back from her hollidays (she spent a month in Australia with hubby and kid) and she and I did some re-celibration on the wonderfull results of the last echo

All is well and I will get my next chemo tomorrow Blood is extreme good for someone on chemo ... almost good enough again to be a donor ... not considering that .. just to explain to you guy how wonderfull I am doing

btw ... the first pict of the wedding are on: http://www.gisius.nl/trouwen.htm

byeeee for now

december

december 30th
I got bit unlucky ... the porth-a-cath they gave me to get the treatment lot easier got infected ... so I spend a whole sundayafternoon on de ER ... all they could offer me was getting the thing out .... well ... it's so comfy to get the treatments this way that I want to keep it .. even tho it hurted a lot ....

Too bad I got high temp few days later, so I was admitted to the hospital to get antibiotics thru the porth ... that did not help enough, so it had to be taken out
So they put me on the list for operations on thursday 22th ... and i had to be sober .. no eating, no drinking and no smoking. At 14.30 the doctor came to tell me that I was moved to friday because there were too many casualties that day.
But on friday I was second on the list so I should be finished rather early in the day .....

Took them till 13.15 to finish the first operation (replacement of a hip) and I was all done at 14.15. Owww ... when I got that first sip of water ... the nurse told me she never saw anyone enjoy simple water that much in her entire career So she got me an ice-stick

They kept me over christmas, which was not too bad ... wonderfull food and all the nurses wearing these stupid father christmas hats

And the best part was off course that I was admitted on the same ward I was last summer. It was good to see all the nurses again and be congratulated on the miraculous results in the liver .. even tho i felt very sick that was real nice .. and kept me focussed on the important part ... the cancer seems to be getting killed rather effective!! :.

The bad part too is that this week in hospital messed up all wedding preparations .... but that too seems to get done:)
Enno's mom is making my dress now, I don't have the time or energy to do that myself. I'm a bit sad about that .. would have loved to do that myself. But the important thing is that it is done!!

Ronald won't be working the next 2 weeks, so that will give us the time to do all the other stuff that still needs to be done before january 10th ... it will be OK I think
If the hair gets here in time ...

Jo, the friend that offered to make me a real handmade wig, has been sick .. well .. I was wondering if I wanted a wig or not, so that was not too bad ...

When she was all better I had decided to take her up on her offer. So now we needed to get the hair. Jo found a theatershop willing to order that for us, we did have a glorious afternoon in de shop
But the hair still is not here ... if it takes long time it might be too late!
Well ... in that case .. the shop sells nice theaterwigs for not too much money too ... so i will get me one of those maybe .. only if the hair does not show up in time

december 14th
Well ... got the official report on the echo
And it was even better than I could expect!! Only 3 of the tumors in the liver are measurable ... 3 are shown but too small to give exact measurements ... and most of the small tumors on the last echo have disappeared ....
So ... happy I will get the next 5 taxoterretreatments .... together with the herceptin it seems to work wonderfully well for me

december 10th
and again real good news ....
Was at the doctors office passed wednesday and she tried very hard to find the lil tumor in my armpit .... well ... in spite of her efforts ... it is GONE!!
So she did send me for an echo ... and that was a wonderfull experience too .....
The lady making all the pictures explained everything she did to me .. .and showed me some of my inside stuff that did not need to be on pics
She was well prepared and obviously had seen the pics from 8 weeks ago ... and could tell me about one tumor in the liver that it had shrunk from 3.1 to 2.1 ... and she kept looking for more .....
After she was done the radiologist herself came in ...

Together they kept looking for something they could not find ... after they were sure it was not there .. they told me that there was supposed to be 7 tumors in the liver ... and they can only find 6 now ....

So hey ... I have been in a major dip lately ... and extremely tired .... no wonder .. with the help of the medication and all the prayers I made 2 tumors disappear ....

Other good thing that happened and makes me feel good about myself ... when in the passed I got good news I was crying the rest of the day ... as well passed wednesday as yesterday I only felt happy, regained lots of energy (girlzz and boyzz ... I even cleaned the house!!).
I think it is a sign I'm finding a balance in being sick ... and not working (that was a hard thing to overcome .. realising that as long as I am taking the taxoterre work is out of the question
And the taxoterre is the main poison that is helping me to get rid of the tumors ... so they want me to have it as long as possible ....
The values of my blood, liverfunction and the heartcondition are extemely well for someone getting my chemo-treatment ... so that is a good thing too .... but getting normal as well ... they have been good for long time now and they stay the same .. week after week ....
ss
I'm working on making a real website ... not very happy with what I'm doing here and there and everywhere ... at the moment I keep 3 diarys .. one here ... one here, but in dutch (and that one gets about 700 hits a month .. so it is read well .... so I need to write almost daily to keep ppl interested and one on the breastcancerforum ... well .. that is kind of different .. sharing with fellow patients is different .....

Well ... all in all I think it is time to get them all together and make good stories about what I've written so far .....
It's a lot of work .. re-reading all my stuff .. remembering what else happened and I could not write about at that time ... and than write again .....

The weddingplans are going good final dates and appointments are set ... Marcus is working on the invitation and that will appear here too ...

november

tuesday november 22
Been having real good days!! Getting the chemo thru the porth is great!! It does not hurt at all and I have both arms free ... so I can do whatever I like ... (there has been days I had to keep my arm stretched all the time to keep the infuse going ... if i bended my arm the pump would go into alarm ..... )
Because they skipped one treatment of chemo I'm feeling very energetic now ... and thursday en next thursday they will only give me the herceptin ... and that has NO sideeffects ... so I can build up my energy and muscles again ....
Have been doing a lot ... even housekeeping stuff ... vacumed, cleaned ... did some washing, cooked twice ..

Today I visisted the workplace and had wonderfull time with all the colleagues ... it is great to feel so welcome!! And it is therapeutic to tell everyone in person that it will take still long time before i can even think about starting to work again (not as long as I get the taxoterre ... nobody knows how long i will get that ... they will give it to me as long as it shrinks the tumors or till the body does not accept it any longer .... well ... you guys won't be surprised i will go for the first option I did get all the papers considering my being sick .... and what I can and cannot do ...
My boss is interim so he will be replaced soon ... and they will get another service for the sickpayments too ... .and this interimboss made special rules for me (in general they want you to show up at the sickpaymentdoctors office every 14 days ... and i have not been in there once ... so it's good to have the appointment that i don't need to go there on paper ...... )

It was also therapeutic to tell the colleagues that i still think that the hardest thing about this cancer is that you loose your normal life so much .... brains don't function normally .. short term memory is totaly gone some times .. the being too tired to spend more than few hours out off the house ... the needing to actualy lie down during daytime ... it's hard to read books .. either i don't understand what they are about or I fall asleep after reading 2 pages ......

And the looks .. If I look in the mirror I see someone I don't know!! I have this huge face due to the prednison i need against the side-effects of the toxaterre .. I needed to cut my hair real short (because it does fall out .. but i'm still not bald) and it is all grey now ... well ... I don't mind the colour ... my wig will be grey but I do mind it's so short!!

It has been ages since i have been writing here ... .sorry for that ....

I have been very tired due to the toxaterre and to some new medication they are giving me so strengthen the bones. So I have only been active on the dutch breastcancerforum ... I haven't even been on msn .....
Getting the medication got harder and harder .. the veins were protesting a lot against all the needles ... so I finaly decided to get me a porth-a-cat.
That is a little box inserted in the chest-area were they can give me the medication ... it is a small operation to have it inserted, so I was in hospital only for the day.

First time I had some bad luck since the diagnose ... I suffered from small infection after the operation that made me even more tired than i allready was ....

Well ... some good things happened too Monday 14th of november we went to see the Four Tops and the Temptations in the Heineken Music Hall .. an amazing concert ... we had real good time
And off course it is very stimulating to watch these old men swinging and singing like it is still 1968

The preparation for the wedding are all going well ... I think I found the material I want to use .. but still going shopping with Enno to see if I can do even better!

october 10 - 0ctober 23

geezz ... and saturday again .... must seem to you guys that i'm getting lazy ......
Not true ... another busy week! And one I did not feel so well ... doctor gave me new medication to help fix the bones ... and I reacted pretty strong to that ... felt sick most of the time ....
Well ... that was supposed to happen and would stay for about a week ... doctor was right again ... on thursday I was all good again .... so I could get the normal doses of chemo This time all went lot better ... after 3 (!) tries to get the needle in .... well .... I'm getting pretty used to needles

Well .. the good news is ... we finaly got the marriagelicense and set a date!! January 10th in the next year ... so time enough to arrange a good party, get the cake ordered, fix the dress ... and all the other stuff that needs to be done ...

Passed week I have not been out much ... only to chemo and I had a dinner with all the colleagues from work ... that is a yearly event and was very much fun this time ...
My colleagues showed loads of happiness to see me again and that feld real special and warm
I have been invisible to most since july .... and that is a long time .. especially since the organisation is going thru a huge reorganisation again .... so it would be more normal. I think, that the ppl I don't work with day to day kind of forget about me when they don't see me at all in such a long period.

saturday:
it was a busy week! not to much time to write long logs But again all in all a good week Been out several times to do some fun shopping.
Things that were NOT good:
on thursday the chemo did not go very well ... it was boring because there was only one other person, and she was NOT talkative .... so I had to amuse myself ... with a little help of Ellen, who was very busy too and the needle was for some reason bit hurting ... and after my smoking break, when the speed of the fluid goes up again it was pretty painfull!! But i survived

The other not good thing was that we were almost on our way to the gvt to get the marriagelicense and set a date they phoned that the system was down and they were not going to be able to help us!! So that got postponed to wednesdaymorning!! grrrrrrrrrrrrrrrrr

and that is all that did NOT go very well So ... who am I to complain???

And the good things
I had a wonderfull meeting in the wig shop where I had to go to tell I was NOT going to buy the wig I ordered last week .... well ... that was no problem at all .. the thing was to ugly on me!! So it was not me that decided it had to go back .. it was the ladies of the shop .... and they totally understood I was not in the mood to talk other wigs .... so I can wait a little before telling them it won't be one of their wigs at all ... with the painfull arm I was not in the mood to tell them that on thursday!
So ... there was another customer in the shop ... and she was very insecure too about starting to wear a hairpiece (she had a partial hairpiece on ... looked nice!!) and I had my camera with me ... so i offered her to make some pics and mail them to her .... she was SO pleased and gratefull ...
So I did send her the prints yesterday and hope she will get them today It is so nice to be able again to DO something instead of being the one NEEDING to be done stuff to!!

After that I went to the patternshop to get me the pattern of the dress I want to make for my wedding ... and while I was there ... I found another pattern ... even nicer in some ways ... so now I have a problem!! I did buy both patterns and I think it will be a mix ..... of both dresses ....
Well ... Enno's mom is going to help me with the cutting ... and I mailed her all the pics of the dresses and the dilemma ... I think she will give me great advice before Enno and me will go shop for the material

Later today the wiglady will be here to do the final fitting and choose the definite colours for my new hair Ronald will make his pizza (he makes wonderfull pizza) and I did buy a very nice sweet chocolate cake for desert Cannot wait myself to start eating that!!

And I'm hanging out on the breastcancerforum a lot too ... a wonderfull bunch of women!! All trying and stimulating each other in the struggle to make the cancer not more than just part of our lives. Because that is the hardest ... I think ... to stay active in other parts of life too .... hard to do when your home most of the day, not working. And doing normal things takes too much energy too .... so it is kind of tempting to think of the cancer and give all your energy to the cancer .... and I believe that that is NOT very healthy!! So I'm very happy and gratefull I found these women ....

Other good thing was going to the fitnesscentre ... doctor told me I need to start excercising to get better condition and build up some muscles again ....
So I sent email to 3 fitnesscentre in the neighbourhood ... one phoned me the next day! So I went there to talk and see what they can do for me .... or better .. how they can help me to do the work myself
A very sweet and nice fysiotherapist will guide me! I will start on tuesday for the first time and we will slowly start building up till i can go there every day for not too long, not to heavy excercises ...
But we will start with once a week ...
The centre is nice too .. they did advice me to get 10x ticket first ... and start paying per month later ... because as long as I go only once a week the monthfee is lot higher .... and the guidance of the fysiotherapist is for them simply part of the service ....
They even adviced me to take my own drink!! As they don't sell the icetea I am hooked on these days. Very unusual in Holland .. in all places where they sell drinks or food you are forbidden to take you own!! So these ppl are real nice!!
hehehe ... and I might even start liking to do the excercises Miracles do happen you know

week halfway and only good news :D

saturday:
What a gift!! A friend of us, not even a close friend, is going to make me a real handmade european hair wig!! At least 60 hours of work!! I am so happy!! and gratefull!!
I did see pictures of her wigs (she worked for movie-industry and theatercompanies) and she does a wonderfull job!! And she showed us some of the wigs she still has ... putted one on Ronalds head and LIFTED him from his chair by the wighair!! (And that is off course our biggest scare ... that the wig moves on your head so you look like an idiot ... or even worse ... losing the wig ....)
Compared to the wigs she showed me ... the one out of the wigshop is absolutely horrible!!

thursday:
hehehe .. yesterday Ton (my workneighbour and good friend, his son sublets my house, and he is also Ronalds boss) phoned me that he needed to see me urgently .....
As his son is looking desperately for new place to live I thought there was trouble in that department ..... but he came to give me this:
[center]
Isn't she sweet??? I have 6 now all over the house ... one I got from Ckay and Feisal when they visited, one is swedish, one i bought myself in Antwerp (she makes chuckling noises and flashes her eyes and moves when you clap your hands ... she was in my lil office .... nice to clap your hands or close a door bit hard and see what happens when you have a visitor ) and one is from Cuba (friend brought that last year) so i'm getting quite a collection of friends

Today chemo day ... all went well ... and i had fun day .... Katinka's mother works in the same hospital and spent her coffeebrake with me. We are getting along very well

and I met the doctor I saw few times in the beginning of being sick ... she came in the chemotreatment room .... looked at me bit puzzled ... so i waved to her .... than she looked less puzzled, walked up to me and told me she hardly recognized me because i look so different ......
so i asked her if she had expected that 3 month ago ... she told me they all (3 oncologists) expected in those days that i would not live by now and that they have such good moments in changing their ideas about my future all the time ... they are getting real close to my own expectation ... 99.5 % that i will get real old ... against 0.5% that i might get some trafic accident or something ......

After the chemo i went to the wig-shop .... the second wig the lady put on my head showed "ME" in the mirror .... funny feeling ... but very good .... the colour of the wig was even total wrong .... so it is ordered now in the colour of my choice. Next week i can come in and fit that one .... they will keep it for me till i need it. And if I might decide i won't need it at all that's no prob either ... i will have to pay my part of the wig when i take it out of the shop ... not before that .....
Insurance will pay big part .... but it costs more than that ..... *sigh* having cancer is not cheap ....;)
I was expecting to visit the store several times before being able to make a choice ... so i went in alone for the first talks and fittings .... when things moved so fast i phoned Ronald to hurry there to give his approval .... after all .. he will see more of me with the wig than me .... He was there in no time!!

After that we did some shopping and went home ... Ronald had to walk because I was using the bicycle today .... for the first time since I got sick .... wonderfull feeling!! Getting more independent!!
Tomorrow I will get more into finding a sportschool to build on my condition .... friend recomends one opposite the workplace ... so also close to home .... and the fee includes use of the sauna!

hehehe .. seems i'm getting done more and more each day!

wednesday:
The minor good news ... the packardHell is back ..... and running fine ..... The stupid repairshop forgot to send it to me twice (yes TWICE) so they gave it to one of their employees who lives in Amsterdam and was nice enough to drop it off hehehe ... and that saved me 20 ero's for transportcosts!!

And the BIG good news ... they did echo from the liver on monday and today doc told me that there is NO new tumors ... and the tumors they found 3 months ago are SHRINKING!!
The liver itself still functions like a "healthy" liver, so that is good news too

So they will go on with the treatment: 6 weeks toxaterre and herceptin and than 2 weeks only herceptin. Again 6 weeks toxaterre and herceptin .. 2 weeks .... well ... you get the picture i

Doc told me to start visiting good sportschool that will help me to work the muscles without overdoing it ..... so i need to find that ..... and i HATE sports .... but i will do as the doc tells me

september 26 - october 2

Saturday:
The Packard Hell still did not return ... When I phoned the company yesterday they discovered they totally forgot to send it off ... so now I have to wait till monday ..... *sniffs*

And the good news is ... I made it to Utrecht to take part in the "Walk for Women" today!! Left the house at 10 AM, returned around 7 PM and been walking and standing big part of the day ...... without any wheelchair!! And .... returning home I made it upstairs, all 3 flights of stairs in one go ... no need to have a break halfway!! I feel very happy and proud .. and most of all healthy ....
The link "Walk for Women" shows all the pictures my camera made today .... I did not make them all .... so there is pictures of my new head ... I wonder if you still recognise me
Meeting up with the women of the forum was even warmer, more fun and more intimite than I imagined in my wildest dreams ... cannot wait till the next meeting! One of the things in having cancer is the sense of loneliness when you're in a group. This is one of the things I noticed in reading the forum that happens to all the women there ... and when I was at the workparty on tuesday I did feel it myself. Today ... among all those women who have breastcancer this loneliness was not there ... not for a minute ... and we did have nice talks about that and other things over coffee and pancakes ... and that was very very nice

Thursday:
Today exactly 3 month ago was my first visit to the hospital ..... and it looked like i wouln't not make it till today ....
In the back of my mind I have been thinking about that and made a beginning on some reflection on all the events that helped me over the passed months to make today possible! Wow ... this is lot easier in dutch!! I think tomorrow and over the weekend I will write about all the things that happened and what was given to me and about all the things I experienced and did in my passed that made it possible to stay positive and happy ... in a way i think all the chances I had to experience life and to learn all kinds of techniques that help me now were given to me too ..... and yes, I'm proud that I chose to live the experiences and chances to learn.
As sooin as that is done I will translate that into english too

Today was again a busy day! First hospital for the herceptinmedication ... and all that could go wrong went wrong .... Ellen did manage to get the needle in perfectly .... and for some odd reason the blood was kind off coming out .... (which is supposed to happen as long as the hoses are connected to the needle, the tap on the needle is open, but the tap on the fluid is still closed ... and as Ellen was supposed to draw some blood for examination that situation had to be created) the fluids refused to run in .....
She had to get the "more experienced nurse" in and she was busy elsewhere, so I did have to wait LONG time .....
On the last checkup on temperature and bloodpressure/heartbeat it showed that the heartbeat was way too fast .... so I had to wait another half hour after treatment to see what that would do ..... either go up more or stay the same (which would have meant doctorsvisit) or go down on it's own ......
Luckily it went down and I was sent home at 1 PM .... on full treatment I leave the hospital around 1.30PM .....

Next I went to see hairdresser to have the eyebrowes done, the Turkish way, with very thin rope ... very fast and lot less painfull than the pincetmethod! (my hairdresser is from Turkey and has a very nice salon, with extra facilities for women that cover themselves, so they can be helped in full only women privacy) ... amazing how much that changes the expression on my face and I decided to have my hair cut real short .... it's getting thinner by the day ... was fully 2 coloured (grey and washedoutbrownishblondish) .... so now I'm a shorthaired grey
Seems I picked out good day .... one of the girls got engaged and was handing out little "amuletforluck" to all the muslim customers and me And they put on a CD that they have and I cannot find ... some native-american music that relaxes me and makes me very happy at same time .... I must find the courage to ask her to make me a copy!!!
After that I did some shopping .... the new face is begging for huge collection of earrings ... so I did buy me 2 pairs (I must get into town soon to get me some more!!), and I found a lovely bolerolike kind of thing to wear when it gets colder ....
And yes ... I did buy some food too
After returning home I found out I forgot the most important stuff ... CIGS .... CHEMOBRAINED ME!! So I had to take another walk ..... and all in all I'm not half as tired as I was yesterday!!

If things stay this way I will be able to to Utrecht on saturday ... october is "breastcancermonth" and that will begin with a "Walk for Women" for ppl that have breastcancer (men can get it too ... just happens lot less). A group of women I met in the breastcancersupportgroup will get together before that to do that walk as a group .... will be lot of fun to meet them for real

Well ... close to midnight .... time to watch Oprah, have some icetea ... do some snacking and get ready for bed .....
The packardHell did not arrive today ... maybe they will ring the doorbell very early tomorrowmorning ....... HOPE SO!!

Wednesday:
I was just too tired after coming home from the party last nite to do anything but hang in front of TV. It was FUN ..... and yes ... I did bring the camera .... and yes ... it has been on my lap for quite some time ... and no ... i did not take any pics ...... too busy talking to all my co-workers. Well ... not all .... some were kind of avoiding me But most were just happy to see me!! And I was told many many times that ppl read up on my dutch blog, even by some ppl that i did NOT expect that from ... which felt like getting some more gifts
Well ... one picture was taken ... when we got in .. i'll scan that one of these days .... even though there is more ppl on this picture ... i got it ... there is lot of benefits in being sick
hehehehe ... best one was that i could not get in with the wheelchair ... and they had some VERY nicelooking securityguys at the door ..... well .... off course i did NOT tell them I'm quite able to do little walking .... was much more fun to have them carry me in

The putershop phoned that the PackardHell is OK again .... they will send it off today so I can expect it to be here tomorrow ....

Monday:
Well ... just too bad .... Ronald sneezed last night ... his back did something like "snap" ... and that was the end of any moving around ......
So this morning he went to see the doc and hospital to have X-rays taken. The rib is broken, the lungs are ok ... and all they can do is give him painmedication and musclerelaxers. Luckily we have supermarket where you can order over the internet and they even bring it up all the stairs .... so we placed a huge order of all the heavy stuff ...... like my icetea, milk, kittylitter, and stuff like that. The "fresh" like meat and fish and veggies I will be able to get in the neighbourhood ... only little walk ... and will be good exercise Luckily I feel so good on my break of the toxaterre poison ... I honestly feel energy building up by the day!
Tomorrow I will attend a huge workparty, kind of once-a-year-thing. Part of me looks forward to that a lot ... other part of me is kinda scared ... will be my first "public appearance" as a cancerpatient .....
Will tell you guys all about it tomorrow I might even take the camera .... and I might even use that!

september 19 - september 25

sunday:
Well ... the PackardHell had to stay in Rotterdam ... they will fix it within the week .... I'm so happy we still have the small Panasonic notebook!! It's slow, but works still very good! And it is lot lighter on the lap too
Ronald had a small accident fridaynight ... he tripped in the bathroom, fell backwards in the bath with one of his ribs exactly on the tap .... so that rib is either bruised or broken ... it seems not to be badly bruised .. he can do lot more today than yesterday Let's hope he cango to work tomorrow!

Good thing yesterday was that the jeweler phoned ... he finished our rings! About 2 weeks sooner as he promised! So we will pick those up next week! We got most of the papers we need to make the appointments with the gouvernment for the wedding .. doctor adviced to have the party in my "onepoison" weeks ... and i think she is right. Since friday i feel more and more energetic! So that might be a good advice and well worth listening too .....

I am also considering getting me a wig ... at first hearing I would be bald I kinda decided not to bother ... on the other hand ... it's getting winter and bald might be pretty cold! Especially if I'm going to drive around on my lil moped, as I plan too as soon as possible, because it will take lot less energy than using public transport system as i can travel door-to-door on the moped And insurancecompany will pay big part off the costs .....
So i got me some folders in hospital and will look into that tomorrow. Seems that the nicest shop is very close to us.

I made an appointment with Enno's mom yesterday, she will help me cutting the material for the dress ... and that is the hard part! So I think Enno and me will go shopping for the material soon

thursday:
Not much happening this week .... till yesterday
This felt like it was organised for ME!!

Very funny was the reaction off all the cars driving behind this little parade, all trying to pass ... using the tram/buslane .. and than the traficlights turned red ... so all was stopped and a tram came ..... (cars are NOT allowed to use the tram/buslane ... only ambulances and firedepartment .... using it here is pretty stupid because there is a hospital just around the corner ... to bad it was just a tram ... and not an ambulance .. that would have been real fun

Today I had only short visit at the hospital for the chemo ... I get only one kind of poison for this week and next, and that takes only one hour ...
After that we went to cityarchives to get copies of our birthcertificates that we need to set weddingdate with the gouvernment .... all we need now is wait for the copy of my divorcepapers of 27 years ago ..... let's hope they can find them (they need to be sent from the city i got married in, which is in the South of this country). Well .. if all goes well they will arrive within a week from now .... I have a name of a very nice lady that i can phone if they are not here by next tuesday ....

Tomorrow I will bring my PackardHell laptop to the repairshop in Rotterdam (with a friend that owns a vey comfortable car ... ) It might need to stay there ... so just in case I installed and imported everything I use on the old Panasonic laptop .... and did the most stupid thing ever!! I managed to loose load of my msn contacts!! And some i cannot find back .... so if you read this ... please contact me the next time you see me on msn .... so i can add you again to my list!!

Still not bald .... so still blonde .... poor me

monday:
Day started very bad .... stupid cat knocked over huge vase of sunflowers with load of water .... so there i was .... early in the morning with towels crawling over the floor to get that dry again ......
Cat is very lucky that i'm so low in energy .... if i had cought him he would have landed 3 floors down ......
In the afternoon I had a great visit .... an old friend who I had not seen in over 2 years (he studies medicine and worked for some time in England and in South Africa) had heard about me being sick ... we had wonderfull time!!
Late in the afternoon my most fav colleague (Jan Marten) came by .... he is official part of the family now ... makes his own coffee
And in between Ronald had picked up my new phone .... so in between visits I have been playing with that
It's FUN .... a very good receiving lil radio and mp3 player are part of it ... and a 2.0 megapixel lil cam (not tried that one yet .... ) The radio will be very nice in hospital (yes yes ... they allow me to have the phone on ) because the hospitalradio is only few stations that i never want to listen to anyways ......

september 12 - september 18

sunday:
yesterday was just a quiet day ... we did some shopping in he neighbourhoodshops and I changed my mobile isp .... and the new isp gives me nice new lil phone I can pick that up on monday!! I love new toys!!
Today Ronald's brother and family came over to visit. Last time they saw me was in hospital when i was recovering from the very first chemo ... so they were pleasantly surprised ...
Their kids are very creative ... so I got nice cards again .... and a windmill ... and a little house .

Friday:
Yesterday was normal chemo-day. It was quiet, just me and some guy sleeping most of the day .... so Ellen (the chemonurse) and me had load of fun about the whole weddingplans .... she even offered to be a bridesmaid and dance around the couple all day ..... well .... thinking about that i think i might take her up on the offer ......
I'm the only patient visiting every week and she told me i'm the most fun patient off whole oncology because i'm doing so well. And that is always nice to hear ......

Yesterdayevening Mark and Lolita (from our fav pub) came over to cook us dinner and show their weddingvideo and help us make all the plans for our wedding. So the guestlist is done ..... and the day is mostly planned .....
What I insist on is having a huge weddingcake to share with all the ppl that showed being true friends during the first weeks of my being sick. Those are the ppl I want to share the cake and champaign with .....

Today I cleaned the livingroom .... so i had a very good day. Took me long time with lot of breaks but I managed!! And I browsed the net for fun stuff ... found a routeplanner for Amsterdam by bike ... which is nice .... i finaly found the best way to get from the house to the workplace on my lil moped ....
And I did find a pattern of THE weddingdress for me .... not very hard to make and I love it .... it needs to be made in the same shade of different materials but i do know the shop that has wonderfull fabrics in all kinds of materials .....

As I expect to start feeling lot better over the coming weeks (they are not giving me the toxaterre, which is the worst of the poisons for 2 weeks to give the body chance to recover from all the poison (and than they will start another cyclus of 6 weeks double poison, 2 weeks single poison ). So I expect to go material hunting soon! I'm thinking about either bleu or purple .... I'll definately will take a friend with the real weddingfever to advice me!

I triend to make appointment with townhall ... but it seems we need to get lot of papers before .... why they don't publish all the necessary paperwork on the website .... they could not tell me .....
Well ... we can get them within a week. So still no date .......
As all the other planning is going so well, first the rings, than the champaign (Liska bought loads of champaign from a bankrupt pub for only 1.5 euro a bottle and we can buy them off her for the same price), yesterday the whole day planned and today the dress; I think we will find a real good date too! It is all signs that getting married is a very good plan for us!

Wednesday:
Doc still very happy with me and my progress We told her about the weddingplans (because of the possibillity to reschedule appointments) and she was very pleased
After the docs we went shopping for a new mobile phone .... my contract is ending and I will move to another provider (who also serves full access to the internet .... which will be fun when i will be travelling to work again ..... and as they offer you free phone with the contract .... well .... this is the BEST shopping
I think I will go for the Sony Ericcson 750 ... with MP3 player and radio and 2.0 megapixel cam ..... (you can put a 256 mb SD card in it .... that's enuff MP3's for my daily need )

Tuesday:
Ronald went back to work today. And he did have great time ... his clients were very happy to see him again ... one even shouted at him .... something like: "You bloody b*st*rd ... don't ever do that to me again .... stay away for SO long!"
Ronald works for a "meals on wheels" organisation ... bringing hot meals to ppl that cannot cook for themselves and don't have relatives close enough to bring them meals ...... and because they have same driver as often as possible it's also a moment to check if the elderly are still OK ... and they bring up the mail, change lightbulbs if necessary, wind up clocks (mrs M was truly very happy .... Ronald is the only person allowed to touch her antique clock .... ). Well ... and as some of the elderly and some of Ronald's colleagues are quite talkative ..... most of them knew about me and what happened ... so it took him ages to do the supposedly small tuesdayroute

Meanwhile I had some visitors, Marcus came over to check if I was fine being home alone .... and Ria came over with a nice box of the real nice Belgian chocolates ..... After work we went shopping and found a real good deal on bars of chocolate ..... lil less than half the prize ... so i got me 36 bars ..... After we got home we found out I'll have to eat all that pretty fast ... the enddate on the bars is end of september .... It's good you can keep chocolate fresh way over end-date in the fridge

Seems the cats and me were on the big contest again .... who can loose the most hair! We did that on saturday too .... seems than it stopped falling out for few days .... today so much was flying around that the cats looked worried at me .... I might win this time!!

Monday:
Since I had big plans for today I finaly did what the doc told me .... In general I sleep few hours, than I'm wide awake, so I get up and wait till I get sleepy again and than go back to bed ....
Doc told me that it might be lot better to take a light sleepingpill when I wake up instead of the waiting .....
I must say I felt like I had a real good night's sleep this morning (woke up twice, but slept again within 15 mins .... so it seems a good idea ... only the box sais they are slightly addictive ..... The decisions one has to make are not always easy .........

Well .. the big plans .... Liska, a friend took me to town to do "girlthings" so we did survey all the expensive shoeshops .... and had a glance at dresses for special occasions ......
Turned out we were both very happy we bought enough shoes last year to help us thru this winter too .... only boots! And ugly boots!
The dresses .... well ... what can I say ..... I'm kind of tempted to make my own dress for the wedding .... all we saw was very NOT fitting my personality ......
So I think I will go to the patternshop one of these days ....

And I wanted to go to this cute earringshop .... but it seems they did not survive ... the place was all closed and for rent .....

So all we ended up buying was some homeopathic medication to help me get rid off the bruises the "vampires" in the hospital give me .... Due to the chemotherapy it's getting harder and harder to find a good place to either take blood or give me the medication. Last wednesday it took them 3 hits for the 2 lil tubes + the blood gets rather thin too .... so I broose easily .... My arms look like junkies arms .

And as the weather still was great .... we ended up on a terrace for icetea and snacks ..... We had a wonderfull time and will do it again soon I'll spare you guys the details of Liska almost killing me by ending up with 2 wheels of the wheelchair in the rails of the tram ..... We did have LOAD of laughs!!