Hello Everyone,

A little while ago I posted because I was very stressed with the treatment I was receving from my doctors, not just the lupus doctor either, who is supposed to check on my fibro.

I had been complaining (not in a nasty way) about a really odd painful right side rib area and back pain. My GP arranged for x-rays of my spine (eventually) which came back as showing quite a bit of damage, plus the old -"you're over 21 syndrome" - everything falling to bits line!! Well, I asked my GP for a second opinion, which went down like a lead balloon. I told him that I would pay for private treatment. I saw a consultant, had a tummy scan done and was told that I had several lumps in my gall bladder (polyps, not gall stones), some of which were 1 cm in size.

Well, today I went to see my surgeon. He diagnosed the acute pain as my old chum costochondritis which apparently is raging at the moment. Fair enough. Then he drops the bombshell on me that he really needs to perform surgery on my gall bladder, but because of the lupus, APS, heart surgery complications he has somewhat a dilemma going on.

As the lumps are 1 cm in size, there is a very strong chance that the next stage is cancer, as bigger than that size is when the danger really begins. Cancer of the gallbladder is not treatable he informed me, and the prognosis is 12 months at the longest. I knew things were quite bad, but even I was lost for words. I thanked him for being honest, left his office and had a cup of tea - typical British girl I am he he. (I shed a few tears when I got home though).

The thing is there is such a high risk having to any type of surgery for me personally which we dicussed, but there is an even greater risk not having it. Great odds hey. I know what I am going to do, but I wanted to share this with you as I have come to regard you all as my friends. I don't usually post about my own bits but hope you don't mind this once.

My darling husband is on the mainland (I live on an island) working away as usual, as I type this. So it is a difficult time for me not having anyone to talk to. I do so hope you are all ok with my sharing this with you.

Thank you all for listening.

goldenwings :angel:

Goldenwings, I am so sorry to hear of this news. I will remember a prayer, I wish I could give you a hug (((((((((((((((( gw ))))))))))))))))).... Keep us updated. Believe.

Goldenwings,
I'm so sorry to hear of this. If it were me, I'd have the surgery. I don't know the specifics of your other problems and why you shouldn't risk surgery, but to me, those risks would probably be better than developing untreatable cancer. Gallbladder removal surgery is actually pretty simple - at least here in the States. (I take it you live elsewhere?) Here it's day surgery with recovery of a few weeks at home. I know several people who have had it done. Is this an option for you? Just get rid of the pesky gallbladder and hopefully that will be the solution.
You're in my prayers...
God bless, Jen

Thank you Corin and JenniferE,

Yes, I have no doubts that I am going for surgery. Laproscopic is the best for me, the main drawback is being put under anaesthetic with all my other problems. Lupus, APS, heart surgery recovery, MNM and all other little bits going on which can cause me serious problems when I am "put out". I don't know all the technical details but the surgeons and their associates really get uptight with it all.

I have cancelled other non-urgent surgeries because of these problems, but there is no way that I am willing (nor is my surgeon) to let the lumps stay in my body much longer.

I have spent too many years fighting disabilities and illnesses, and I am ready to do battle with this one. Somebody told me today I was brave. :o I was rather taken aback, because I don't feel that I am. I don't ever think I am doing anything other than anyone in my position would do, getting on with life. It is not a rehearsal, make the most of what you have got. OK so I do have lots of limitations because of my disabilities but hey, I sure use what bits I can and as I always say I have life, that is the most important.

Hope things are going ok with you both.

goldenwings :angel:

Golden,
I agree... you are brave. You're an amazing woman and don't ever doubt that! Do you know when you're having surgery?
God bless, Jen

Golden,
my heart goes out to you!!! I guess anytime we get bad news we think the worst, that's normal. But I think to survive we have to believe that things are going to work out. I believe in the power of prayer. I'm praying for you, as I know other's must be. I am hoping you will find strenghth in that. Your so obviously a strong women. God Bless You!!

Goldenwings,

I clicked on your thread, like I do with almost all the threads I see started by you. I have to say I was sadly shocked by your post. You are such a loving, helpful, caring soul- i have seen countless helping hand posts you have given to others on this website (here and in the Lupus board). By the tones of your posts, I would never have guessed you suffer the way you do. You always come across as a beacon of strength and light, supportive to others and putting yourself second.

I am touched and inspired by your braveness, and how even in your time of need, you continue to say "I will win." And the fact of the matter is, you WILL win.

I love you for what you are to others.
A.

Please keep us posted as health permits. Accept you are brave, because bravery is not fearlessness, but persistance in the face of fear. Some would be defeated by such news. Your strength is a wellspring within you, be sure to stop and replenish every day. Thank you for sharing your news so openly with us.

hi golden wings, i didnt realise you had lupus as well as fibro. it must be awful! you have been through alot, good luck in it all, love april x

Hello Everyone,

Thank you all so much for your beautiful words to me.

I am truly overwhelmed by the emotions they have brought out in me. I lead quite a solitary life in the respect of not having family around me when my husband is at work, and to read all of those things that you have written to me is so truly wonderful. I felt you were all in the room with me as I read. My husband was so very happy also I do so thank you all.

I will let you all know more when I find out what is to happen to me. I live on an island, and there is only 1 hospital, so hopefully I will be way at the top of the list for surgery.

Once again my friends, thank you all so very much.

Keep well.

goldenwings :angel:

Hello My Friends,

Just thought I would update you - again.

I received a letter on Saturday last asking me to contact the hospital to arrange an admission. Superb, I thought. I had to wait until today - Tuesday - as the department was closed because of the Easter break. I telephoned and guess what???

The admission letter was in fact for an operation that I was due to have last year that I cancelled because I did not want to take the risk of surgery as the operation wasn't a life saver, more of a make me comfortable one.

So I told them what I thought, and I am back to waiting for the surgeon's secretary to contact me. The other thing is that the next person in line to me waiting for an operation has had to wait and wait, because I was still on the list and should not have been. My friends in the UK will know exactly how it works here.

So until I hear any more my chums, I will sign off.

Hope you are all doing ok.

goldenwings :angel:

Oh "wings",

I have read and re-read all these posts since you first posted and I can't seem to put any words down. What can I say to you? You are probably the bravest person I am honored to have in my life. I can't bring up the words. Imagine that, me, a loss for words! There's a first.

I want to bring you here, with your husband of course, take you in my arms and just hold you until it's all better.

I hope, that just saying that, you know how all this makes me feel. You are a survivor.


Much love to you my dear "wings",
tk

Hello everyone,

Just the latest in my surgery saga.

Hold on to your hat. On Thursday last - or was it Friday - I really can't remember, that's how it is getting to me now - I got yet another telephone call from the admissions unit. They said to me and I quote "We have you down for an operation for blah blah blah, and just to let you know you are on our list". "May I just interrupt" says I. "I just want to finish what I was saying" said she. I let her. I really could have saved her breath, but never mind. When she had finished I said "No, once again you have got me down for the wrong surgery. I cancelled this surgery for the first time about 5 months ago, and for the second time almost 2 weeks ago following a call from your office. There is in fact a further procedure on the list I knew nothing about". Response "Oh, dear. Are you sure?" WHAT!!!!

Me now. "I am awaiting surgery on my lumpy bits in my gall bladder ". Her "Yes, your gallstones". Me. "No, they are not gallstones, they are polyps turning/have turned into tumours that need to come out before it gets too late to do anything about them". She. "Oh dear I see, that is why your surgery notes have it down as very urgent". "Yes" said I, "that is correct". She again "Oh leave it with me, the information needs to be clarified within your records, the urgency must be taken note of". You're not joking!! I do not even know how much the lumps have grown, I am very worried now.

I got a letter the next day with an appointment to see the anaesthetist. I know I shouldn't say it perhaps, but I am not going to pay for this visit. I have arranged all of the consultations and tests myself and when I am finally admitted I have paid for a private suite so as not to take up a bed that somebody else could have. They have really messed about with me and my head is in such turmoil with all of this. I am a nervous wreck. I must keep calm though, until I see the surgeon and then I will let rip.

goldenwings :angel:

dear goldenwings,
take a deep breath, hold it, gently release it. there will always be anal people in the world. do not let them affect the deepest purity of who you are. fear is not your friend so stop it! sure i know it is hard. i have done the cancer scare, biopsy, surgery thing. fear is not your friend it is your enemy. it feeds on itself and eats you alive. do not let it. i have had a few cancer scares since then. no sweat. reality is that what is already is and being fearful won't change a thing. be firm with the hospital. do not allow them to drag you down to their level of behavior. you are a better human that that.
and believe me that surgeon can rip bigger holes in that hospital than you can. let the surgeon do the stress gig. you delegate it, and breath.
i love you,
bluelakelady
i will focus all my healing energy on you.

Hiya BlueLL,

Yes I do so understand what you are saying and normally I would agree wholeheartedly as you know. The thing is though I have a prognosis of only 12 months with the type of cancer that is waiting in the wings if I don't get my surgery real soon. There is absolutely no treatment. This is why I am so on edge and not at this point in time able to shake off the fear as I would normally.

I do so feel your friendship and warmth. Thank you.

Your friend

goldenwings :angel:

allow me to wrap you in a blanket of brilliant colors. splashes of color like paint on a canvas spiral and swirl about you. colors of peace and gentle breathing. colors of security and comfort. allow me to return the favor my friend and wrap you in my protection. it is understandable to feel like you are straddling a razor blade. understandable to know fear. breath and prepare your body. ask it for permission to be invaded and helped. your mind is a powerful tool. your body and your brain are close friends. like close friends they help each other.
love,
bluelakelady
ps. my first time out i faced the removal of both breasts or possibly get cancer and die. i still have them and so far so good. you on the other hand are more limited in time to prepare. i have been waiting for 19 years for my mamogram to come back saying it is time. rainbows of comfort good friend. tell hubby if he can do the healthboard thing to keep us posted as he is able. this friend would love it if he has the energy and time. i understand if he does not. you are his first priority.