Dearest Max

My heart goes out to you and the family at this time.  There are no words I can find to make you feel better but with your wonderful support to others on this foumm just needed to put in print that I will hold you in my thoughts and send virtual cuddles - wish they could be real ones.  Love and peace  Jules xxxx

I cant tell you how much you all mean to me and my hubby (you may see his name pop up soon!).  I have gone into a very strange mode - distant and quiet - think the body has shutdown from things for a bit!

I am seeing a gamma-knife specialist on Tuesday I think just to see if the brain lesion can be treated with targeted radiotherapy before I become symptomatic. The oncologist feels that I need rid of it to generally make what life I have left more comfortable.  I have made no decisions either way and wont until I see if it is worth pursuing and the risks are minimal.  The Prof is fine with whatever I decide but really does feel this could help me in the short term with pain and loss of ability, so I guess it must be a consideration for me.

Thank you for taking the time to talk to me especially with so many of you going through so much yourselves.  You are a wonderfully supportive lot x

Hi Max,

I too had a similar side effect to that drug a couple of years ago when I did the splits and broke my bubic bone. It made me feel like I was on a differnt planet and only took them for a few days, eventually reverting to paracetamol.

Wishing all the very very best for your meeting, sending love and hugs, Brian

Hi Brian .... certainly not good that you broke bones, but I am well impressed that you did the splits!!!! x

Hi Kathy .... Good to hear from you!  I have been a rubbish sleeper a few years now and that's after taking a sleeping tablet.  Nice to have time to browse the days events though and do the crossword!  The MDT meeting about me is Wednesday so hopefully I will hear then or Thursday.  Having read about cyberknife a lot now, it really seems quite common and easy to go through so I am not so terrified as I was - just another little hurdle to keep me comfy as long as possible!  How are you my lovely? X

Hi Max

Thanks for note on my thread and just wanting to let you know that am keeping  you in my thoughts and hope the outcome of MDT chat/info will be what you need to hear to keep you comfy and within the arms of your loved ones.. Take care brave lady.  Huge Hugs  Jules x

Hi Max, you have been on my mind and certainly in my prayers every day. You are one brave lady and such a support and inspiration to everyone on this forum. I look forward to hearing the results of the MDT meeting on a plan for your treatment. I'm not familiar with a cyberknife procedure so can you enlighten me? This entire cancer journey for me is mind-blowing and I seem to learn something new about it every day.

Be kind to yourself and just know that we're all out here rooting for you.

Hugs.

Lorraine

Hi Max .hope you are well, you are one fantatic lady and we all love you to bits ,I am not to well but at 82 my life is comming to a end ,take care lots of love george xx

Sorry to 'gatecrash' your thread Max and am keeping  you in my thoughts.  Just wanted to respond to our mutual forum buddy, George.  Sad to read that you are not doing so good my friend and send  you comforting hugs (sorry too that they can only be virtual) and hope that your pain can be brought under control.Your loving family will be a huge support just now and your consideration for others during your own journey has been amazing, thank you.  Warmest regards  Jules xx

Hi Dear George - I too am sorry to hear you are not feeling so good and am sending you my love. How are your family and have you had help from the GP with how you are feeling?

Lorraine and Jules .... thank you so much for your ongoing support.  The meeting went well but I am still waiting re funding issues so no real news. I am feeling okay physically and the discomfort has been helped a lot by steroids - just be good to know what is going on but the waiting game continues lol!  Thinking of you all the time Jules and the emotions that you must be going through. Hope you are well Lorraine. Be in touch soon x

Hi Dear George - I too am sorry to hear you are not feeling so good and am sending you my love. How are your family and have you had help from the GP with how you are feeling?

Lorraine and Jules .... thank you so much for your ongoing support.  The meeting went well but I am still waiting re funding issues so no real news. I am feeling okay physically and the discomfort has been helped a lot by steroids - just be good to know what is going on but the waiting game continues lol!  Thinking of you all the time Jules and the emotions that you must be going through. Hope you are well Lorraine. Be in touch soon x

Hi Max, I'm sure this waiting around is agony for you, and many of us have had to wait for answers during the course of dealing with this cancer journey. I know the medical people understand how hard it is to be waiting and wondering what the next step will be, and I'm sure if there was some way for them to speed it up, they would. Knowing that is cold comfort for sure. Be kind to yourself as you wait and just know that all your virtual buddies out  here are holding your hand and waiting with you. I hope that gives you some warm comfort.

You ask how I am doing Max, and I appreciate you thinking about me. I am recovering a little each day so that is progress I guess. I don't really know where I'm heading with all these cancer diagnoses. Sometimes it feels like I'm never really going to be free of cancer which can be depressing, but it is what it is and only those of us who are living with cancer really know what that's like. Living well with cancer I can handle, but I've never had any patience with not being well. I'm a very independent person, always have been, and I've always been the one who took care of everyone else. Letting someone else do the caregiving is likely my biggest challenge. If this gets any worse, I've got some heavy duty adjusting to do. In any case, right now my pain is not near what it was as long as I don't do anything stupid, like vacuum, or some other such chore that requires me to overuse my right arm. I need to acquire patience too!

I'm just rying to visualize if all of us on this forum were able to be in a large auditorium and holding hands in a large circle, what a sight we would be! Can you imagine the energy we would give to one another in that large circle. With a good imagination, almost anything is possible. We can't do that physically, but we can do it virtually, so picture it Max, that is what all of us are doing with you right now.

Take care my friend and hold my hand.

Lorraine    

THAT IS ONE FANTASTIC POST THE TEARS ARE RUNNING ALL DOWN MY FACE I AM SO PLEASED TO HAVE THESE TALKS WITH YOU ALL ,MY LIFE IS COMMING TO A END I AM 82 IN JULY AND HAVE HAD A  FANTASTIC LIFE A GREAT MARRIAGE TO A FANTASTIC GIRL AND SOME GREAT KIDS BEV AND KARL,GRANDKIDS ,NICK,SAM,BETHERNEY ,AND GREAT GRAND,SON REECE .DID MY TIME IN THE ARMY WITH A GREAT TEAM OF LADS SOME I AM STILL IN TOUCH WITH,I DID JUST OVER 7 YEARS .HA WELL GOING FOR A WHISKEY .GOOD NIGHT AND GOD BLESS

Dear Lorraine ....  honey, what a powerful message - like George, I have to say that is the first time I have been reduced to tears by a post here.  My positivity is slipping away if I am honest and goodness I could do with a hand-hold with all those people who would understand the feeling of hopelessness. I am tired of fighting the unknown - the disease, funding agencies, health teams and tired of putting on a brave face to friends and acquantances who havent a clue (thank goodness for them) of the stress involved with just trying to get through each day.  Today is the first time I have thought 'I dont deserve this' - all I have ever tried to do is be kind and loving to others and I really DONT deserve this!

Thank you Lorraine for being there - and all my friends here - I know you truly understand and it is so sad that any of us are in this situation.  I am holding hands with you all x

Dear Max

The tears will flow (they are now too),

Our hands are joined in our respect for you.

Take our virtual love and always know

Your forum buddies are here for you.

'Enough said, Jules xx

I'm really sorry I made you cry. Sometimes tears can be healing in a way that alleviates some of the tension that tends to build when we try to hold it all in. It sounds like you have a great family there and you do appreciate them in your life. I know that trying to be brave and not show what we're really feeling can be a heavy burden to carry. I saw my Dad do it when he was dying and my brother as well. Perhaps its' human nature to not want to burden our loved ones and that is noble, but not always easy. There isn't any easy way to get through something like this, although I'm sure it helps to share the emotions, good, bad, or otherwise. Treasure every moment you have with your loved ones as I'm sure they want to do with you. For yourself, join hands with all of us here on the forum as we support each other. More hands make a lighter load.

P.S. Hope that drink of whiskey did the trick. Just don't overdo it. Here's a hug to go with it.

Lorraine

Dearest Max, guess I made everyone cry. (I thought it was just me bawling as I wrote that post.) I think all of us keep these feelings bottled up inside until we're ready to burst. The uncertainty that we face with this disease can get overwhelming and all of the feelings we hold in get to be quite a burden. No one can possibly know what it feels like to be looking our own death in the face unless they've been there. I know people mean well when they say "you have to think positive". For other situations I've had to face in my life I have been able to do that, but not this, not when I know I'm likely fighting a losing battle. I know we have to treasure every day, every hour, every moment because really, life is precious. We also know that everyone will die one day; no one lives forever, but I really didn't need an advance invitation.

We will get through this Max, one way or another and we will hold hands with each other as we take that journey. You/we are not doing this alone. We all share a common bond here, remember that.

Take care lovely lady and hold us in your heart as we hold you close.

Lorraine