Wednesday 30 January 2013

Catch a Falling Star

Hello Everyone!  I hope you won't mind if I don't reply individually this once.

Starman and I are completely and utterly overwhelmed with your kindness and prayers.

I am reading them all out to Starman and have left a short comment on Cat's kind post.

We have now had some time to process things, and we feel much calmer and are able to be more objective.  

These are the facts as we have been told:

-  Starman's PSA level is less than 10 nanograms per mililitre
-  his Gleason score is less or equal to 6 (they are unable to be more accurate)

The consultant called it a low-risk cancer.  

The MRI that was programmed for two weeks' time has been brought forward to Saturday because they have had a cancellation.  That's good because we then have to wait two weeks for the results.

The consultant is a little concerned because he says that they need to know whether there are any tumours hidden behind the two that they have found so far.  (One of these is very small at 5% on the left side whilst the other is bigger at 20% on the right side).  We didn't know that there was a left and right side of the prostate until now.  

Starman is a little concerned because he has had some back ache low down in his back for the last six months or so.  It could just be due to lifting logs, raking the drive or any number of outdoor activities he does around here.

The choices we have been asked to think about are:

-  active monitoring whilst watching for progress of the disease using PSA levels
-  active surveillance which is similar to the above but also means repeating the biopsies at intervals
-  external beam radiotherapy which is done five days a week for seven weeks
- brachyterapy which is where radioactive seeds are placed in the prostate to deliver     radiation directly into the gland
-  surgery to remove the prostate gland.

We feel it is better to wait for the results of the MRI before Starman makes any choices.  And he is also talking to other people who've had the disease to get a wider view.

It's all very scary as we had hoped so badly that the results would be positive.

That first evening driving back from the hospital was awful.  We hardly spoke to one another because we didn't know what to say.  We were just trying to keep calm and needed to process the information.  Consultants over here have no bedside manner at all!  They say it how it is.

Later in the kitchen I made us hot drinks and I sat at the kitchen table and sipped mine.    I felt completely numb.  Our son appeared in the kitchen and wanted to know all the details.

Starman started to explain things to him and I could feel the tears leak from the corners of my eyes.  Once started they became a flood.  I just sat there with my hands over my face and sobbed and sobbed.  I didn't want to, but I couldn't help it.  What I did want was for Starman to come across the kitchen and wrap his arms around me so I could tell him how much I loved him and that I would always be there for him.

Instead, he walked out of the kitchen into the living area with our son, still talking and making it obvious that I was being too noisy.

I felt that he was shutting down, and shutting me out.  We had an awful evening.  Neither of us could eat.  And although the TV was on, we weren't really watching it.  I went to bed quite early as I have to be up on a Tuesday at 5.30 and need to get my sleep.   I didn't hear Starman come to bed, but on 'early start' days he often sleeps in the spare room.  I didn't see him in the morning because he was still asleep when I left.  

I went round all day with a rock in my stomach.  But the people I work with are wonderful, and when you are teaching classes of children you find you are so taken up with what you are doing that there is no time to think about yourself.

When I arrived home I felt quite a bit better.  Starman came into the kitchen.  He was feeling better too.  We sat and had some lunch and a very long talk.  In essence, we reconnected.

Today we feel better still.  There are still worries, of course there are, but we are facing them together, and the numbness has to a certain extent worn off.  We are not happy about having to wait another two weeks for results, and we are worried about the outcome of those results, but we have to remain optimistic.  Life must go on as normal as possible.

I will try to keep an eye on blogs, but please excuse me if I don't make long comments at the moment.  

I will do my best to let you all know of any more developments.

As far as TTWD is concerned, we both want to carry on as far as we are able.  We feel a closeness that we haven't had for years.  Perhaps it is now more important than at any other time.  I don't claim to understand it, but our perspective has changed on life and how we are towards each other.

Finally, just to say once again how much we value your support and your prayers.  They mean so very much to both of us.  You are all incredible.

Thank you, thank you, thank you.  Please keep praying.

Many thankful hugs, Ami











26 comments:

  1. No need to reply to us Ami.

    We are grateful that you are keeping us informed!

    You are going to be processing a lot of information over the next couple of weeks, and making some big decisions. Staying connected with each other will be most important- it doesn't always mean that you have to be glued at the hip. Sometimes you need to process individually, so you can move forward together. Try not to be disheartened if Starman needs a bit of space to process. We often send out mixed signals in times of trials...but sometimes we do just need space to catch our breath.

    Remember the instructions they give you when you fly-put the oxygen mask on yourself first so you can help those who need it after. Difficult sometimes...but essential. Take care of YOU too.

    Much Love
    Willie

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  2. Ami.....

    Don't worry about all of us....we will understand....and just appreciate the update :)

    It is amazing to me that God brings things to us....at the exact moment that we need it. Like you said....you are feeling a closeness that you all have not ever felt....and that will be needed in the days and weeks to come.

    Love one another...be gentle with yourselves....and try to remember that men process things differently than we do. Him stepping back...may just be that he is trying to figure things out...and protect you.

    I will be...and have been praying for you both! Wishing for only the best.....

    Hang in there!!! Hugs....

    ~Lucy

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  3. Whatever you two decide on the path to Starman's recovery, please know our prayers are with you both Ami.

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  4. Hey Ami, Willie's right, no need to reply to everyone...just happy that you keep us informed as you are able.

    Cancer is one of those stomach-clenching words but listen to the consultant, it is low-risk...extremely good prognosis.

    Yes, you are going to have ups and downs but I have faith that you two will get through this together. Willie is also very right about the need to process individually before processing together...patience is the keyword here. You've already seen that after Starman processes, you reconnect and communicate.

    Whatever you need, let us know. Sending lots of hugs, prayers and healing energy.

    Blessings,
    Cat

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  5. As everyone before me said, don't worry about reading or leaving lengthy comments! Just keep us posted on how you both are doing!!

    That is a lot to think about and process. Prayers that your two weeks goes by quickly!

    Prayers and hugs,
    Elle

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  6. Sending prayers and healing energy your way! Hugs, Terpsichore

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  7. My thoughts are with you both.

    Love and hugs,
    Ronnie
    xx

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  8. I am so sorry you and Starman are going through this. My one piece of advice is to take a notebook and write down questions that you think of and take that notebook with you to the doctors. It is so easy to forget things you want to know and to forget what the doctors tell you. You will be in my thoughts and prayers.

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  9. Oh Ami, of course you don't need to reply to us, but just remember that we are all thinking of you and you are right. Doctors here have NO bedside manner at all. love ya lots,Jan>x

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  10. Don't worry about us. Take care of you and your family. We will still be here and sending your our prayers and hugs.

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  11. Oh Sweetheart - don't even think about us here in blogland, we just want to support you both and pray for you. We appreciate your update, but all we want to be is a soft spot to fall.
    Those were words of wisdom from Willie, about the need to allow something to process individually, and then as a couple. The important thing is that you are together, considering options and holding hands.
    I do think that Lucy is right too, God leads us in ways we cannot understand, but the closeness you have experienced with this lifestyle, will serve you very well during this time of uncertainty.
    Also - my heart swells to hear the words "low risk" - what a beautiful statement! This is very positive!
    Thinking of you in prayer, and sending positive thoughts across the ocean.
    hugs and love
    lillie
    PS I think that is a self defence mechanism in doctors, but it sucks....don't let it get to you.

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  12. Ami, I'm sure everyone understands if you don't reply to everyone and if we don't see too much of you around blogland. I'm glad you're both feeling a bit better and are facing this together. That's huge! Waiting is never fun, but I hope and pray that the results of the MRI are good. (((hugs))) & prayers!

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  13. Hi Ami. I just recently started reading your blog, so I don't know you all that well yet, but I am sorry to hear about what you and your husband are currently going through and I wish you all the best as you guys tackle this together.

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  14. Ami,
    It's so kind of you to give us an update like this so we can pray and be thinking about you, Starman and your family. Those sterile sounding consultants used some very good words and I know it doesn't take that knot out of your stomach. There will be tough decisions but there's a little time to make them and to do some more research.

    Most importantly, I'm so glad you found your way back to each other after such a hard day. Keep clinging okay!

    Huge hugs and lots of prayers.

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  15. Best wishes and positive energy coming your way.
    Kelly

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  16. Hi Ami,

    I am touched and so moved that you took the time to respond to my note, in the midst of all that you and your Starman have going on. Really. I don't know what to say. Thank you from the bottom of my heart! It was unnecessary but so very kind of you! I was kind of worried about the length of my post, but I felt like an introduction was in order, and of course I wanted to make sure to thank you and everyone for what I have learned, and continue to learn from their blogging.

    I agree with you wholeheartedly- it is very important to be honest and upfront with Rob about the blogging. He knows that I read these. He's fine with it. Sometimes he thinks I am reading other "fun fiction" and he jokes with me saying, "She wrapped her legs around him...". LOL! I tell him it's not that this time. I did fess up and tell him that I responded to your blog last night when I was cuddled up next to him in bed, but that was after we talked about another little issue. I was saved from any bumm smacking as I had an MD appointment this morning, and not so sure that would have happened anyway. He wasn't pleased, but I was pretty contrite about both things. I promised to do better. Rob is a good man and I feel more than blessed to have a husband who loves me for who I am- even when my little submissive self has flown the coop! I am a bit of a feisty thing, but a loving one! :) A work in progress always.

    Thank you again Ami. Please concentrate on you and Starman for now. No need to respond. I will continue to hold you and your Starman in my prayers. I know it's a scary time. It stinks that you have to go through this. As I told you, the people that I know who have been through this came out the other side of treatments doing great and are well! Positive thoughts that your Starman will too. It is very beatable!!! And- you have ttwd to help you along the way in whatever form you need it to be. (((((hugs)))))!

    Take care,
    Katie

    PS. I am trying to set up an email address. I am just nervous about going about it so it stays anonymous and doesn't pull in some of my real info. Also, Thanks to Cat for allowing this exchange to begin with! So appreciated!

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  17. Ward and I will be praying for you and your family, Ami. I'm including some links to some support forums.
    Macmillan's Online Community - This one is UK based & for families

    Prostate Cancer Forum

    (((hugs)))

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  18. Ami,
    I know you were hurt when Starman just went on talking to your son rather than comforting you - but I can see Nick reacting the same way. Men are different. I bet he was afraid that in comforting you at that moment he would break down and he wasn't ready to do that. I'm so glad you reconnected. And I know you'll pull together, but you'll have to be understanding with one another as you each deal with things in slightly different ways.

    Post when you can because we care, but don't worry if you just don't have the time right now.

    Hugs,
    PK

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  19. Oh Ami, I know how stressful these times are. I agree that Starman just needed to talk to your son. They come to rely on their sons for strength in times of stress. Maybe he knew it was hard for him to be strong at that moment since he was scared.
    You know I am here for you to vent if you need to. Just take care of yourselves. We will be around!!

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  20. Hi Ami, as everyone else has said, no need to reply individually, or to read and comment. Thank you for taking the time to update us though. We are all thinking of you and Starman.

    I am so glad you reconnected at the end of the day and are facing this together. As others have said, please try not to be disheartened if Starman occasionally needs a bit of space, he probably just needs some time to process on his own.

    Sending you lots of positive thoughts and energy and prayers.

    ((Hugs))
    Roz

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  21. Hey Hun
    Sorry it's took so long for my comment.
    Just wanted to send you my best wished and let you know I'm thinking of you and Starman.
    As the others have said, don't worry about us and replying x x

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  22. I just saw your blog mentioned in another one, and decided to read along. I wanted to let you know that you're in my prayers, and praying for the best possible outcome. {{{HUGS}}}

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  23. Ami,

    Guys do react differently, I can attest personally to that. When I went through my bout with hi PSA, I withdrew very deep into my cave. Be patient and after after Starman has had the chance to process all this, I guarantee you will be the one he will seek for counsel and advice. My prayers for you both.

    George

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  24. Ami,
    Please tell Starman that Will and I are both thinking of you, and we are sending you all of the love and support we have across the Internet miles.

    Never, ever hesitate to email me if you need to just vent, talk, or feel a hand squeezing yours across the distance.

    Elisa Xo

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  25. Ami and Starman, we were in a similar place last year, and it was just, grueling both emotionally and physically. Walking into that cancer center was somewhat surreal. Doctors, questions, fears and hope. My heart goes out to you both. Hang tough, lean on each other, and try to maintain belief, a faith, that it will all be ok. The prayers and good wishes of many go with you. Please add mine.

    Sara

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  26. I don't get around to comment much these days, Ami, but Minelle is really wonderful about keeping me updated. She mentions you especially, and finally I was able to stop by. My heart goes out to both of you. Cancer is a scary, scary thing and it has the power to evoke emotional responses like few other illnesses. The one positive thing about cancer is that there is more awareness now--support groups, information, patient advocacy, etc. etc.

    Take each day as it comes, and only do what you are able. Hugs and prayers.

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