Venting

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3 months 2 weeks ago #30513 by pamcarr
Replied by pamcarr on topic Venting
hey there Harpy, i wish i hadnt needed so much back surgery, but with the tumours, they just eat away at my bones, they cant remove every vertebrae, so its just repair as it goes

good luck at your appt tomorrow, ill be sending you some positive vibes, all those injections, did you get any relief having them? ive had plenty, but dont help me

get a good car space, try and stay safe, and hopefully the day isnt too bad for you (wishful thinking i know) but we can only live in hope

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3 months 2 weeks ago #30514 by Brett3
Replied by Brett3 on topic Venting
Thanks Pam , if you don’t mind me asking? When did your Tumours start, how old where you?
I think today should go well, I hurt so much I think I will end up in tears desperate for his help.
The injections have helped , not 100% but did make life a little more bare able. The injection in C2/3 was the most beneficial with stopping the migraines. The last few months they are slowly returning .
Your last sentence says it perfectly,
“ we can only live in hope”
I am also getting my hair done, a little good news, my eldest daughters fiancé turns 40 on the 11th and we’ve organised a huge birthday party for him on Sunday. He has always wanted a Harley when turned 40 so my daughter has brought him one. But she will disappear for a hour and will be riding the Harley Back in a wedding dress, much to the surprise of everyone one there. They have been engaged for 17 years .
I can hear a super hot coffee calling . Take care
Harpy

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3 months 2 weeks ago #30515 by pamcarr
Replied by pamcarr on topic Venting
hi again, i was 31 when the first tumour was diagnosed, they original specialist told me it was in-operable and said i had about 12months to live! i was a nurse and worked in operating theatres, and a surgeon told me to see his friend, a professor at Royal North Shore hospital in spinal unit, he operated and here i am! but unfortunately they keep migrating to other vertebrae, although i have no active tumour at present, the original one was in C4, so they removed the whole vetebrae and replaced it with my hip bone, cage, plate and screws (unfortunately a screw is loose now so i need to get that fixed), but i have had several years of very manageable neck pain, just the rest of the back that went to shit!

i do hope the doctor can offer you some treatment

wow! that will be awesome surprise for him - enjoy
and enjoy your coffee

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3 months 1 week ago #30519 by Brett3
Replied by Brett3 on topic Venting
Hi pamcarr, wow you must be such a strong person to keep pushing through everything you’ve been through. I am in awe of your strength .
I have had a dozen surgeries but none on spine.
I had my scan today, then they injected tracer and I had to go away and drink water and keep moving, then come back in two hours . They then did another full spine scan, it took 45 minutes then she comes in and says I have to do your knees and feet. That took another 40 minutes. So now just have to wait to hear back for appointment to get some more pain relief.
Ps
The surprise wedding went off absolutely perfect, everyone waiting in yard chatting knowing my daughter had gone to get his present. Oh my, my daughter was beautiful and very sexy on the Harley with her wedding dress tucked up lol, my hubby was in front on his bike and two friends on their Harleys behind. As they rode into back yard , we heard some say I knew it was his Harley, they my beautiful daughter got off, untucked her dress and said surprise, we’re getting married. A lot of people cried when the couple went to their Nans ( my mom and son in laws nan) and asked them to be there witnesses. Was a beautiful moment, both Nans over 80.
Harpy

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3 months 1 week ago #30520 by pamcarr
Replied by pamcarr on topic Venting
wow!!! the wedding sounds fantastic, i can just imagine how awesome your daughter looked in a wedding dress and on a harley!!! definitely memories made for your families

actually i dont have any extra strength or anything else that you or anyone else doesnt have, i just have pain, and like all of us, we try to manage it anyway possible, and when there has been no other choice but surgery, you just have to go for it, trust me, i have had many many days where i want to curl up and never face the world again, but the sun keeps coming up and the world keeps going, and so there is no other choice but to keep going, so we are all strong when we have to be

good luck with your scans, hope you get some results and the doctor is able to help with your pain

Pam

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3 months 1 week ago #30521 by Brett3
Replied by Brett3 on topic Venting
Yes Pam, some very special memories were made that day. I talk to my mom everyday on the phone if I dont go see her. She told me she slept ALL night. She also still tearing up telling me that Sunday was the best day she has ever had.
I am now thinking if I am offered surgery I will take them up on it. When ya up most of the night it takes way too long for the sun to come up. Do you have any hobbies you can do?
I do some crochet here and there, just around the edges of tea towels for friends or slippers. Takes a lot longer to do but I do enjoy making them.
Harpy

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