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Leigh\'s Update

10 years 3 months ago - 10 years 3 months ago #31211 by Leigh
Good morning Forum Friends,

My neo has been keeping me awake at night the last few nights and sleep has been cat naps in the afternoons.....lol

Just a quick update to say I am still here alive and kicking and trying to enjoy every moment of life.

Yes of course I have worries and crazy thoughts in my head....all part of trying to accept the obvious.

Second opinions are no option for me for the extension to my life that they could bring. I have chosen for quality and connection with my family and friends.

The fight certainly goes on to survive as long as possible...so positive attitudes all the way.

My Oncologist has no real stats on how the evolution..progression of the disease will take. Roughly 1% of bladder cancer patients end up with mets in the spinal fluid. So no real sucess results for treatment that can be offered. The best was chemo injected directly into the spine but the results were two months extention at best.The pain,sickness and traveling would just not be worthit. My passing could be spontaneus, or spread over weeks rather than months.

So I now choose life....enjoying my time alone with my thoughts and with my partner and family and friends.

I feel at peace and have a calming presence that all will be well.

The summer time has started here in Hollland and all life has started to grow and buds and flowers are sprouting everywhere....wonderful.

It is Easter weekend and my little niece and Auntie and sister are here in Holland with me this Easter break and we are bonding in so many special ways.

I wish everyone a really special Easter weekend and love and peace to all.

Leigh xxx

Leigh, 39
Dx July 2007
TURBT July 2007
RC/Neobladder ,Studer Pouch, September 2007
Erasmus Centrum Rotterdam
TNM Classification: pT4 N2 Mo
4 cycles aduvant chemo Gemzar & Cisplatinum

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10 years 3 months ago #31137 by vgau
There are people in this world that make a difference in the lives of others without even knowing. You have been one of those people for me.

I can understand your feeling the need to get things in order as my mother did that too. However, remember that you still have time to enjoy life and make more memories that can never be taken away.

Get your bucket list going of things you can and would like to do and use those good days to just enjoy.

Wishing you many good days,
Vi

Dx 10/5 Non Invasive Papillary

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10 years 3 months ago #31136 by Leigh
I would like also to mention that the wonderful messages I have recieved by email I would love to post on my blog so that my family can read them.

For privicy I will remove all names related to the mails for your protection.

Please email me if this would not be acceptable and I will remove any parts necessary....

They are all special and need to be on display If I may be so bold.

xxxleigh

Leigh, 39
Dx July 2007
TURBT July 2007
RC/Neobladder ,Studer Pouch, September 2007
Erasmus Centrum Rotterdam
TNM Classification: pT4 N2 Mo
4 cycles aduvant chemo Gemzar & Cisplatinum

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10 years 3 months ago - 10 years 3 months ago #31135 by Leigh
Today I had a couple of second opinions and the results from them were to be expected.

I have been very fortunate to have been under the care of a very special lady Oncologist Prof Rottey from Belgium specializing in Urinary and head and neck cancers. This lady advises all local hospitals in Holland also...

When told that nothing more could be done intially I did not want to hear that.

I had to fight and clutch at something to make sure I did my best to stay with my loved ones. I have done enough and now I am going to take some special advise and live for every moment.

Today I recieved a wonderful email from a forum member whom I will keep private but would like to express some of the words in the email.

This has had a profound effect on me today and has give me peace in the thought that I have done enough.

Hello Leigh,

This is xxxxxx from the Bladder Cancer forum.
I see you taking such good care in preparing for your passing. Leigh, my dear - we are all going to pass at some point - no one can escape that. But what we must all do is live, live, live...when there is life...death does not exist.

I understand why you may want to get things in order - ...but now use your time to feel the sun, laugh with your partner, tell everyone that you love what they mean to you....and live! Spring brings so much promise - no one really knows when we are going to pass. So live according to your schedule, not someone else's.


You are the 'heart' on the forum and you have touched mine. Please keep in touch and let me know what you did today to make yourself smile and what your plans are for tomorrow.

xxxxxxxx

Leigh, 39
Dx July 2007
TURBT July 2007
RC/Neobladder ,Studer Pouch, September 2007
Erasmus Centrum Rotterdam
TNM Classification: pT4 N2 Mo
4 cycles aduvant chemo Gemzar & Cisplatinum

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10 years 3 months ago #31132 by Flamenco.
Dear Leigh,
When I read your post on Friday I was overwhelmed, not just at the news of your latest diagnosis, but at the courageous way in which you gave us the news, and I could not find words to say what I wanted to. I would like to second Charlotte in saying Thank you to you for all you have done - You have enriched our lives.
Diane

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10 years 3 months ago - 10 years 3 months ago #31131 by Leigh
Preparing to get my house in order this pass week has been a great strain on my partner and family and friends. (me too of course but kept that secret)

They have all rallied around to get things rolling for me.

Getting home care registered and set up when the time comes so that just a phone call is required. They will be available 24/7 when necessary which is a great relief.

The funeral directors have paid a visit and me being a total control freak at the momment have all that set up ready to role. Of course my family found it devastating to talk about as our European culture hides everything and anything to do with dying. Lots of tears and sadness...which in a way was a cleansing for us all. Designing my own passing announcement cards and thank you letters wws pretty weird but satisfying at the same time.

I guess I have just blocked the emotions .....should really be more sensitive to my family's emotions more....just got to get it organized though so that they have nothing to do later.

So desperately trying to make it a celebration of my life instead of a somber affair....how do you do that right when loved ones are taken away.....hmmmm

Finances have been a nightmare....writing letter after letter...insurances...pensions....changing names on documents...Getting letters on original documents from doctors to prove that I am now a terminal cancer patient etc....well I am pleased to announce it is all done and dusted....a week of help and support and now I can relax....so too can my family and close friends.....I know they are happy about that....no more pressure for them....well you know hat I mean..no added work from me...

One great thing came out of this last weeks trauma of planning is that most of them have now set up there own funeral insurances and packages........

Ok...I had my rambling head on....could not sleep....xanax calming tablet kicking in now....03:16 in the morning here in Holland...time to get some nods in noddy land.....big day in the morning.....setting up a second opinion ...

Love and peace to all...xxxleigh

Leigh, 39
Dx July 2007
TURBT July 2007
RC/Neobladder ,Studer Pouch, September 2007
Erasmus Centrum Rotterdam
TNM Classification: pT4 N2 Mo
4 cycles aduvant chemo Gemzar & Cisplatinum

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