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Sandy B

Cancer has returned...

14 posts in this topic

Dear all,

 

The cancer has returned. Having got over the oesophageal cancer last year, I now have secondaries. Six tumours in the lungs and two on the brain. I know treatment being talked about is only palliative care. Fortunately I'm not in too much discomfort at the moment compared to the surgery I had done last year, but certainly things have progressed in the last four to five weeks and that could change rapidly.

 

I am still trying to get my head round it, coming to terms with having to say goodbye to every body I have loved and known in my life time. It's tricky, I have the time to say I love them and how much they mean to me, but it is very, very difficult all the same, but at least I have the option. Time scale is three to twelve months, but how long is a ball of string? I would like to think I could last out a lot longer, but the way things have progressed recently, I think not.

 

My brain is very addled, I get very confused and it stands to get a lot worse, but I thought I would come along and just put you in the picture, but for how much longer I don't know as I had to think really hard about turning the laptop on and using remotes etc. I just hope this is all making sense and not too much jibberish.

 

I just wanted to say a big thankyou for all the support this site has offered me, it was the one thing that made a major difference to the scleroderma journey, not having to walk it alone.

 

Fond regards

 

Sandy B

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Hi Sandy,

 

I feel very sad reading your post, but thank you for letting us know what is happening with you. I often wish I had wise and comforting words to use at times like this but I haven't.

 

Just know that we are thinking of you and trust that the rest of your journey will be as comfortable as is possible.

 

Much Love

JudyT

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Hi Sandy,

 

I am truly sorry to read your post; like Judy, I'm pleased that you felt able to let us know the situation, but I'm afraid I really don't know what to say to help and comfort you.

 

I can only wish sincerely that over the coming months you will be as free from affliction or pain as is possible and that your final journey will be peaceful and dignified.

 

My very fondest wishes to you and your family,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Dear Sandy

 

Thank you so much for sharing this with us, you have no idea what an integral part of this family you actually are and have been, of course we will all be hit by your loss and like Jo have no idea what to say to you or each other.

 

What dignity you have and how brave you are, all I can say is how very sorry I am Sandy.

 

My love to you and your family.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Dear Sandy - I was thinking about how I felt when I was first diagnosed with scleroderma. What was it? How will it change my life? How long will I live? I was so scared. Throughout this journey I came to appreciate all the wonderful blessings that life had handed me and I focused on that. None of us know what lies ahead. What you have shared by your post has strengthened my resolve in appreciating every day I have. I admire your courage. I appreciate your words. I will be thinking of you, your family, and friends.

I am sending you a warm gentle hug from northern California. - Ann

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Hi Sandy

 

I was so sorry to read your post and I really don't what to say to you that can help except that my thoughts are with you and your family.

 

Buttons

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Hi Sandy,

People with scleroderma seem to be born fighters, stay strong and we will see you at rainbow bridge

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Dear Sandy

I don't believe that I have ever communicated with before now and I am so sorry it is under such difficult circumstances. I hope that you get the opportunities to say everything that you need to to all those who are closest to you whilst you are still able to. Remember that you are not on your final journey alone so surround yourself with the people who matter most to you.

My thoughts will be with

fondest wishes

Helen

 

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I'm very new to this group, but want to tell you that to love and be loved is the greatest gift in the world. That you have family that care for you...you always have a place in their hearts, now and forever.

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Hi All,

 

Well I have had a busy two weeks getting things sorted, Will, funeral and other paperwork and it's remarkably liberating, I don't have to worry now its all sorted.

 

After initially crying every day for a week, acceptance has come and now I can get on with living and enjoying what little time I have.

 

I saw the oncologist last week and she thinks I have upwards of six months rather than less which is good. I was measured up for a radiotherapy mask Friday and I start treatment this coming Wednesday. Can't say I am looking forward to it as they have clamp the face mask with me in it to the scanner, but it has to be done.

 

The family are all rallying round me to help me as much as possible and have promised to do everything possible to keep me at home. It's been hard because we all have entered into a grieving process, they are grieving for me and I for them, but my family being my family we still manage to have a few laughs along the way so it's not all going to be about pain and sorrow.

 

Anyway I'm having a good day, my brothers and partner are painting the outside of the house, something I wanted to see done.

 

Will keep you all posted how the radiotherapy goes, apparently it can cause symptoms to get worse before they improve so I might have seizures etc. but we'll cross that bridge when we come to it.

 

Hope my fellow sclerodermians are all fairing well.

 

Regards

 

Sandy B

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Dear Sandy,

 

How incredibly brave you are!.....It makes me feel very humble and choked up to read your courageous words. Your family sound wonderful and my heart goes out to them at this very difficult time.

 

Please do keep posting for as long as you're able; all your friends on these forums are sending love and good wishes to you.

 

 

 

PS I'm pleased the outside of your house is getting a makeover! :emoticons-yes:

 

 

Fondest wishes,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Dearest Sandy,

 

I've read your posts and what others have posted back to you, its not often that I am stuck for something to say...but I am now. I feel so deeply for you and your family but as always you are showing great courage in the face of impossible odds. I think like you it's good to know what lays ahead and to make the best and enjoy the time and make it count. I have put a few words together and I hope they will ease you a little.

 

When life deals us a hand

that's difficult to hold ...we hold on

 

when we want to say things

and the words don't come ...we hold on

 

when the nights are long

and sleep will not come ....we hold on

 

when the road ahead is dark

And we search for the light ...we hold on

 

when we want our love

when we want our peace ...we hold on

 

I wish you a safe harbour, Sandy. Bless you and keep you and your family.

 

With admiration for your courage always,

 

Lynn

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Sandy (and others), you may PM Lynn for the last stanza, which is very kind (and only generally religious), but we have those pesky guidelines to follow. Anyway, I'm sure you'll want the entire poem to treasure and to keep!

 

Lynn, thank you for writing something so comforting for Sandy to hold onto. And Sandy, my heart goes out to you.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Thank you Lynn.

 

I am holding on and I will put up a fight just as long as possible and spend every last moment I possibly can with my family. Every day I now value and treasure as if it is my last. Hopefully I will have several months left but one can't tell, but I truly appreciate everybodys' kind words and how difficult it is to know what to say in such circumstances,

 

Regards

 

Sandy B

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