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Pam,
Niggs (Nigel) posted on 7/27 sonnets 7, 8 & 9. Your interest delights him. For a change of pace; you may want to check them out. Hopefully brings thoughts away for even a short time from the hospital setting and all you are enduring. Gerry |
Pam,
Have you heard anything about the bone cancer/infection issues? It appears you were pretty much told you needed to have a L-3-4 fusion or thereabout. Is this something you think you would be up to? I think you had mentioned in the past having had a fusion in either the cervical or lumbar area. I had L4-5, along with a laminectomy some years back but still needed a series of Epidurals a year or two later in that area, which didn't help. Also had a failed SCS trial. Since my mamo over a year ago revealed a growth on the back wall which appears not to look cancerous; but will have to have continued mamos/ultrasound regarding the growth every 4 -6 months. Have my third testing middle of this month. As you mentioned; it does get overwhelming. But as you are a "fighter" as well; you will not give in or give up. Sending prayers your way "my dear friend" to cope with all you are dealing with. Gerry |
Just got the scan results from my neuro earlier tonight. Good news - No to osteomyelitis and No to bone cancer. But I have got to keep an eye on the right breast tissue, you can see / feel it is denser than previously and the right nipple has started to invert ever so slightly. So much so I had to ask DB last year, has my nippple always looked like this - No! I've never had it before that I could recall and when they did the testing it was very sore to touch with the ultrasound. So I have to have 12 monthly checkups & if it turns in anymore or it looks to be turning a different colour, or I get a discharge of any kind, I have to go straight away to GP for referral. That's good news I think...
It does however seem I might have some sort of blood poisoning from the half titanium pedicle left behind in 1996 from the surgery in 1994. It may explain why my markers were so high (like really high) and why I keep throwing high white cell counts on and off for over the past 20 years. Now of course that has to be checked & needs to be done before Narula can proceed. In the meantime L4/3/2 has disintegrated / deteriorated - which explains why I'm loosing height and the vertebrae needs to be removed preferably via an anterior procedure but because of many difficult stomach surgeries I've had and the difficulties they presented it is a real predicament for us all and so, and I absolutely must have a general surgeon present as well when they operate. The not so good news ... If the titanium pedicle is in fact poisonous and a problem Narula will not do any procedure at all, so I simply must get that resolved first. If it's not a problem which I'm hoping for, they will leave it there inside L4 where it's been for the last 23 years and I can carry on. Truly it's not really caused any issues, the odd pain / awareness occasionally but in the main no real cause of any issue has been able to attributed directly to the "oh it's the 1/2 pedicle left behind" I do wonder if it has caused me pain on occasion, but the reality is it is more likely pain from where they took the bone from the laminectomies in 1978 & again in 1994. Laminectomy pain can last for 30 plus years I'm told.... I go home tomorow, I'm being discharged with yet more drugs of meds to be sure I will survive the next 3 weeks and not require hospitalisation or assistance for next 3 weeks so we can celebrate our anniversary. I will know more when I speak with neurosurgeon next week with my husband. The Neurosurgeon insists DB be there with me when we meet on account of the severity of the situation. To do nothing is not an answer either. My spine is crumbling at a rapid rate and my spinal cord will become compromised before long. Night xx:hug: Quote:
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Jeez
Your silent time may it be a most remarkable moment
It be a faith based moment A moment of clarity if you will You ability to mutuel when you need it most You are an amazing being How lucky he is Your sincerity is so transparent Your time of experiencing a touch from Heavenly Father As you well know it comes in all manifestations Your a inspiritatio who is real and is able to radiate that to another Happiness be in you heart To fell the joy you so deserve To have the identical impression 1/2014 And because breast cancer loves bone it the most likely place to go Hence when left alone in ones head And to hear the possibility of the following "Enhance the of lower lumbar better able bodies Differential diagnosis includes osteomyelitis, metastatic disease" All I wanted to know was why was it hurting as badly and progressing so quickly that all it where a cyst also active on my lower spine And to be just sent to a doctor I went to three days ago only to tell me your at the wrong doctor You need to see a vascular dr I'm like are you kidding To have to have money for a co-pay Then for parking All the wnergy to get to the doctor just said coming home I'm not rushing To say I don't know what you are thrown and to continue to put One foot in front of the other Is just who you are As I so get it You are gifted And you have the answers As you show over and over For what may work for one will not work for another And you can see that Blessings to you and you faith that give you the strength You go Love Me |
Eva, I don't know what to say to this, I'm lost for words and struggling to respond. What I want to say to you and Instead I'm lost and what comes out at the moment is gibberish. Fortunately you know I've been ill and are more patient than sim either, I have to go through and check every word I type. I can't believe they had you attend a doctor only for you to then be told sorry your in the wrong Place. Unbelievable!!!
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Surgeon consult Wednesday 16th at noon They have insisted my husband be present. Could they make it sound any scarier!!
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Pam,:hug: Awaiting your report on the Aug. 16th consultation. Pray it is not as scary as you may fear. Gerry |
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It's good to have a supporting spouse present, it is also someone who can be a witness, and remember what you may not. I have my phone set on "Record', through an App I have and record every visit. The screen is off, and not one doctor has noticed it. This is so I can make sure I have the facts straight. I have found that I have in fact remembered some things wrong. God Bless you and I hope it all works out well. ;) |
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IM SO ANGRY What the f I want to punch anyone who would try and test me like such ever again I have had the only experiences Never ever will I let anyone cut me open again And to be deemed an addict Oh PamelaJune I cry for up you I know the physical and mental pain and the disrespect disregard of the excruciating pain on suffers Just the headaches alone from all the pain As I sat in my oncologist office for my usual visit Asked if I was okay Not realizing that my pressure was being taken My dear friend Sitting in the waiting room waiting to be seen My pain caused my pressure to go through the roof Hearing what happened to my mother yesterday Estranged I still wanted to step in and take charge of the horrific treatment she was getting What is wrong with this world we live in Please don’t take this the wrong way After much time on NT I opted not to have a SCS To hear the trouble you already experienced I fear a power outage Or the paddles shifting Or the stupid device not charging Until it was dropped So sorry |
Had read all posts
You are amazing
In everyway You have a mind and body only you know The fear we go through Not knowing Having to wait The doctors who just DO NOT GET IT IR GIVE A POOP just an hour in my shoes I tell them Just an hour having no relief Just an hour nobody listening to them Just an hour Of being accused of being an addict Just an hour of being alone Just an hour not believing them Just an hour begging begging just kill me Just an hour I have you in prayer I have your back I have a friend in you You are dear to me May I return my experience strength and hope We are very very strong woman We have tolerated more than most And yet we still do do and do We are not forgotten May one day just one see what it takes to get up in the morning and ask Heavenly Father Help me in this day You matter in everyway We may not understand why what and when it will all get easier But like myself I have but one who needs me That be Eva Today I take her to the dentist A job her mother should be doing I have given up on any hope of help Just yesterday a very dear friend who is home for a short time before she travels back to her family in Florida Says Eva your hair has gotten so long you look so good I just cried Thank you I said And she understood As she too has invisible pain I haven’t been able to get my hair cut I have given up and thaught it be easier to just let it grow out A little lipstick And that all I do It isn’t that o want to look sick It is the misunderstanding as it is all inside hidden from the naked eye And I will never allow myself to look disheveled For as long as I can take a shower and smell fresh Have Heavenly Father in my heart and remember to keep it that way To have a beautiful grandchild who needs my everlasting love The few doctors who listen and know as they have been with me from the very beginning There are a few very scary things going on and must be addressed I am taking it slowly Said to myself What tha rush Thinking of you as I go through it by myself Love Me |
Eva, I let my hair grow out. it was one of the first cost saving measures made, I had to get it cut every 4-6 weeks it grows so fast
I felt happier with my hair once the fringe was grown out, I was beyond bothering to cut it monthly. I have had foils put in 6 - 12 months ago & I use either of 2 shampoos by Redkin, 1 it puts a slight hint of pink in amongst the hair by picking up on the previous foils and prevents the dreaded skunk line regrowth. It gives a hint of pink & looks like it's been done professionally. The other is purple colour that picks up the platinum highlights and really makes them pop (silver /white gleam) - looks as though I've just come from the hairdresser. I did this for 12 months, had my hair cut, styled & foiled. My hairdresser was so impressed she's sticking & selling both products now. .... I don't use it every wash, just once a month and I alternate. Plus with my hair longer I only need to wash it once a week - what a luxury from short hair daily washing. :hug::hug: |
Finding me
Default Finding me posted in General mental health & emotional support
I’ve grappled where to post this topic, it’s painful to me, but not like the chronic pain I suffer from. It’s depressing and while I acknowledge I have depression it’s about a journey from depression to living a full life again, and nor is it a topic for alcohol, addiction and recovery. Well it is, but it’s no longer my need to document his journey backwards. So, I’ve opted for the forum General mental health & emotional support, I hope and pray NT’rs can continue to help me and offer support as I embark on this journey to finding me. I’ve used other forums on here and have always taken comfort in knowing I could turn to NT and it’s emotional support I need right now. I need to be able to write my journey and have advice and support from the community I turn to in need. I am need of emotional support. https://www.neurotalk.org/forum85/ I have no idea how to move forward in terms of making arrangements to be sure I am financially secure. And as I keep telling my family who tell me how easy it all is. I am still supposed to be in hospital, I am unfit and cannot bend or twist. I am emotionally ill, I’m suffering with severe depression and anxiety so my mental health is also unstable. I’m trying to work from home so I can at least have some semblance of income come in, I’m struggling to work and concentrate, I’m struggling with just living. Some days I eat, others barely anything at all. I have cared for this man for 25 years, I have put his needs before mine always, I was the good wife. Now I’m just a fool, discarded when I am at my weakest. So I’m inviting you to join me on the other forum and share your experiences and advice as I move forward. I understand if it’s too hard a topic for some of you to join me on and if you are unable to do so, please know, the advice and love you have shared with me over these last 2 years will always be treasured. |
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