Update on barb : Hi ladies I’m having... - SHARE Metastatic ...

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Update on barb

Barbteeth profile image
65 Replies

Hi ladies

I’m having an iron infusion this morning...I feel exhausted all the time so hope that will perk me up

Told my oncologist about my moods and pain and she agreed that I should cut down on opiates as much as possible...going to have cortisone injection this month around the epidural space near the fracture...the lower back pain can be treated with palliative radiotherapy but ugh!!... however if it’s due to mechanical pain then radiation won’t help...having a ct scan soon so see what’s going on I guess

Still feel crap from stopping the morphine patches but she didn’t seem too concerned

My bloods were ok apart from the low haemaglobin

Thank you ladies for your love and support

Barb xx

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Barbteeth profile image
Barbteeth
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65 Replies
Teddielottie profile image
Teddielottie

Glad onc has a plan for you ...just relax and be pampered this week and eat well. Get lots of rest before the big day 😘

Stage4Gir profile image
Stage4Gir

Thinking of you and hope all goes well. Do they text you for iron? Mi e was actually really high but I’m fatigued too?

Barbteeth profile image
Barbteeth in reply to Stage4Gir

Iron (haemaglobin or red cells) are always checked every month...mine was 1.02 which is borderline...any lower I would get a transfusion

Barb xx

Barb - what do you mean she didn’t seem too concerned that you still feel like crap from stopping the morphine patches? That is a very big concern you raised in your last post and it deserves more attention. Did she suggest something else to help wean you off versus going hard stop? I’m concerned she didn’t fully understand the depths of your despair. Can you contact her again to get a specific plan for your emotional agony and associated pain? Please keep us posted. We are on your side.

Barbteeth profile image
Barbteeth in reply to

I think because I’d stopped the morphine she was ok about it....she did mention a psychiatrist who works st the unit but I’m not going that route...don’t want antidepressants ever again...felt awful on those

If this epidural injection helps my pain I know my life will be transformed...I’m keeping an open mind though as I’ve had cortisone injections in the past but they didn’t help much...I’m just desperate to get relief

Thanks for asking

Barb xx

in reply to Barbteeth

Thanks for responding. I know you have a lot going on. Keep posting here when you need support. You are important to us.

Barbteeth profile image
Barbteeth in reply to

Everyone’s important on this site...it’s lovely to be totally honest and nobody will judge or criticise you

All the best

Barb xx

Praying it works & you feel better very soon Barb! Thank you for the update. ❤️🙏❤️

MyMiracle13 profile image
MyMiracle13

Barb I do hope the iron infusion will work for you. Are you eating better now?

Barbteeth profile image
Barbteeth in reply to MyMiracle13

I’m trying to eat a bit more...although a bit nauseous still...I had a roast beef sandwich at lunch to get more iron into my blood as I know it’s absorbed better than non haem iron ...I’m just eating what I fancy...not necessarily super healthy but it’s food

Barb xx

MyMiracle13 profile image
MyMiracle13 in reply to Barbteeth

Just eat what you feel like eating so long as it doesn’t make you nauseous. Small portions but eating frequently might help. You are always in my prayers.

Barbteeth profile image
Barbteeth in reply to MyMiracle13

Thank you...I’ve never been a big meal eater....tend to pick at stuff

Barb xx

Francesca10 profile image
Francesca10

Barb

I hope the the iron infusion works and perks you up a bit. When are you getting the epidural? I hope sooner than later because you have been suffering so much with pain.

Hope this all works and gives you some relief♥️

Barbteeth profile image
Barbteeth in reply to Francesca10

Thank you Francesca...it’s 26th September ...so not too long away

Apparently the effects of the iron infusion will start in 5 days or so!

Barb xx

laurac1014 profile image
laurac1014

I hoping you are feeling better ASAP !

This all sucks.

Barbteeth profile image
Barbteeth in reply to laurac1014

It certainly sucks big time

I’m off to yoga...get out the house and concentrate on something else

Barb xx

Godbeforme profile image
Godbeforme in reply to Barbteeth

glad you have a plan of action and hoping things get better and soon as I HATE to see you suffering and in pain! I had a pity party earlier today as I went to the grocery store and just said "hi and good morning" to a young man at the store and he just ignored me like I was a ghost and I took a few steps and here come the tears grrrrrrr uninvited tears mind you! I hear you loud and clear about anti-depressants, who in the world WOULDN'T be a bit low at times with what we're dealing with. I don't like FAKE DRUG happy with all it's goofy side effects either! Love ya Barb and hoping and praying for some relief for you and I ask for it in Jesus name, amen! <3 xo

Barbteeth profile image
Barbteeth in reply to Godbeforme

What an ignorant young man....urrrg...he needed ignoring but I know just how you felt

I must admit to crying this morning on my way to the hospital (and when there) but I was listening to classic FM radio and Delibes Lakme came on...the flower duet...bet you know it....anyway that set me off before I even got there....the tiniest thing or remark can make me cry

Thank you for your good wishes...you’re such a sweet person and you’re very appreciated on here

Barb xx

Godbeforme profile image
Godbeforme in reply to Barbteeth

yes, it's not fair when tears come out and you don't want them too! heck he was probably in another world and maybe had an ear bud in and thought I was speaking to someone else, you never know, I just HATE being so sensitive! I'm going to youtube to listen, if I know the song, I don't recognize the title but will be listening because I LOVE beautiful music; can't imagine a world WITHOUT music, thank you God! <3 xo Healing prayers sent your way!

Godbeforme profile image
Godbeforme in reply to Barbteeth

How beautiful! yes, I've heard the melody but never knew the name, THANK YOU and including here so you can listen again if you like! xo <3

youtube.com/watch?v=C1ZL5Ax...

Barbteeth profile image
Barbteeth in reply to Godbeforme

Thank you!!

It’s so beautiful...my favourite auntie Margaret used to sing this a lot...she’s a beautiful soprano...my family have lovely voices...I used to sing in the church choir when I was a girl and loved the Latin masses

My voice is no good now unfortunately but at least I can listen...I adore opera and go to see the live transmissions from the Metropolitan in the cinema....usually cry lots!!

Barb xx

Godbeforme profile image
Godbeforme in reply to Barbteeth

Yes, it is so beautiful; it takes me away to another place. I was watching a maestro the other day and you know they are so emotional when conducting and I thought, "I have those same emotions when I hear that music"! I never have really understood my deep emotions until I made that comparison, not that I could lead an orchestra or even want to, just that music makes me feel like that and I can relate! Does that sound crazy? love ya <3 xo Stay safe in Jesus name, amen and hope you're feeling much better!

mariootsi profile image
mariootsi in reply to Godbeforme

Music is a healer! I used to sing with the choir and also with bands. Singing always takes me to another place. It soothes my soul!

mariootsi profile image
mariootsi in reply to Barbteeth

Good for you! Keep going!

hdhonda profile image
hdhonda

Oh Barb, I hope you get relief from the iron and epidural. It sounds like the pain has gotten ahead of you. And now you need to kick its butt. Pain sucks☹️. I hope you feel better very soon. Blessings, Hannah

Barbteeth profile image
Barbteeth in reply to hdhonda

Hannah I’ve cut down on the codeine today as didn’t have to do anything active...just going to yoga...that’ll test the pain levels☹️

Barb xx

PLASEM profile image
PLASEM

Barb I hope the epidural injection gives you relief the most important thing on the procedure is to stay still

Barbteeth profile image
Barbteeth in reply to PLASEM

Oh I’m well behaved having procedures especially in that area....god imagine if I moved...eeek

Barb xx

Red71 profile image
Red71

I was just thinking we hadn’t heard from you when I found this post. I hope something works for you. Radiation really did help the largest part of my back pain so I’m hoping it is available for you. Keeping my my fingers crossed for you!

Barbteeth profile image
Barbteeth in reply to Red71

Yes I think I remember you said it helped with pain

I guess it’s much different to the SABR radiotherapy I had in July for my liver met?... I couldn’t go through that again...still feel nauseous and tired two months later...horrid side effects

Barb xx

Godbeforme profile image
Godbeforme in reply to Barbteeth

goodness, it's already been two months ago? time is flying for me ... don't know where it's flying to ... but it's flying by ... <3 xo

Red71 profile image
Red71 in reply to Barbteeth

I think I was really tired for about a month afterward and didn’t have any appetite. I just made myself eat...English muffins with cheese and fruit on the side was about all I ate for a month. Nothing tasted good. But the really sharp back pain disappeared almost immediately. I have continuous dull pain but not the sharp pains that made me feel like my leg was going to give out under me and caused me to grit my teeth from the pain. I also couldn’t turn my head very quickly. All of that kept me from driving. Now I can do almost anything but know I will have an aching back if it involves bending over something or lifting.

Godbeforme profile image
Godbeforme in reply to Red71

you're right because I remember the people coming to radiation for palliative care to help with the pain when i had my treatments in 2013! <3 xo

Hi Barb. At least they have done something. I hope the iron works.

Do you have a specific site of pain in your back? You mentioned a fracture. Is that where you have your pain? They inject at 2 sites for the epidural. If you can sit, bent forwards, you can have the injection at the higher level (I think it’s L4), this has better results, I was told by the Dr that does them in our pain clinic.

Is the wedding this weekend?

Sending you lots of beat the pain vibes. Stay strong Barb xx

Barbteeth profile image
Barbteeth in reply to

Yes the pain is at T5 where the fracture was...I also have developed low back pain recently which worries me as this is new

Yes the wedding is on Friday...we’re going down to the place on Thursday...rented a cottage near the venue and my other daughter and hubby staying with us..we’ll come home Sunday

I tried my hat on the other day and I’ve gone off it...tough I’ll have to wear it now!!

Smashed all the side of my new (2nd hand) car yesterday ...bloody furious...caught a gate at the stables....could be worse I guess...my old banger was ancient but unscathed...typical

I’ll put a picture on of the wedding with or without the hat!!

Thank you for your reply

Barb XX

in reply to Barbteeth

Your body has been fighting so much recently, it’s no wonder you are feeling shite. Hopefully the injection will circulate below and take all the pain away. It’s good for constipation as well.

I know you don’t feel up to the wedding, but it does sound amazing. Hopefully the iron will kick-in.

Yep, I’ve seen pictures of you, and you will look amazing with or without the hat.

Sorry about the car. Easily done - I am quite fond of reversing into tree trunks myself!!!! As long as you weren’t injured, that’s the main thing.

Thinking of you this weekend. Lots of love xx

Godbeforme profile image
Godbeforme in reply to Barbteeth

Aaaaaaah the wedding date is almost here ... what a load will be lifted off of you when this happy occasion takes place and I can't wait to see the pics! I've never been to a wedding that included horses, didn't you say some will be there? <3

Barbteeth profile image
Barbteeth in reply to Godbeforme

I’m afraid no horses at this one as it’s too far away.. Miranda lives in London and the wedding venue is in the Cotswolds

We have saved Monty and Bugsys old horseshoes and Miranda has painted them silver and they will form part of the table decorations so we’ll have a horsey theme!!

Barb xx

Godbeforme profile image
Godbeforme in reply to Barbteeth

Oh good! They will be well represented with their old shoes at the table!<grin> I just sent this to my brother, it is the best sermon I've ever heard on the grace of God in my life I do believe. Hope you enjoy it and are blessed! youtube.com/watch?v=wgNyO5G...

hopenowandtomorrow profile image
hopenowandtomorrow in reply to Godbeforme

Great message! Thank you for sharing!!!

Godbeforme profile image
Godbeforme in reply to hopenowandtomorrow

You're quite welcome and I'm glad you liked it; it explained many things to me about the grace of God that I didn't really understand!

mariootsi profile image
mariootsi in reply to Barbteeth

Friday will be amazing. Plesse post pictures.

Tam-56 profile image
Tam-56

Barb, glad you are doing better. We were all worried about you! Just breathe....enjoy the wedding...it will be beautiful! ❤️

Justme153 profile image
Justme153

Hope the iron works so you can totally enjoy your daughters wedding!! Can't wait for the pics!!!

Thatflowerlady profile image
Thatflowerlady

Keep us posted .sending healing thoughts your way .

Rhwright12 profile image
Rhwright12

Prayers for new treatments for your pain relief for your back...🙏🏻💕

mariootsi profile image
mariootsi

Oh Barb you are always here for us! Hope the infusion helps and you get your strength back to continue the fight full on.

Love,

Marianne

Sensai7 profile image
Sensai7

Hi Barb, If you are having iron infusions due to low iron I would suggest that you start taking femented rice in the morning.

easy probiotic, All you need to do it store cooked white rice in a clay pot with a little bit of water. Cover it and let it stay overnight for 12 hours. Next morning the powerful and magical Probiotics is ready, just take 1-2 spoons of this rice along with the water first thing in the morning. This is s very good probiotic and also very rich in iron and other minerals.

Barbteeth profile image
Barbteeth in reply to Sensai7

Gosh I never knew this...iron in rice!!

Might give it a go...don’t you have to be careful using cooked rice though?.. food poisoning?

Barb xx

Sensai7 profile image
Sensai7 in reply to Barbteeth

The rice should be freshly cooked and cooled before soaking it. Its the best thing for building immunity as well. I have been having it for the pst month or so. Its really helped me with gut and immunity issues.

Kimr2081 profile image
Kimr2081

Hang in there Barb and i hope these other treatments help with the pain. I have an appt with a radiation oncologist on the 20th. I am hoping that will kill the cancer and take away the pain. The pain can be so tiring as you well know.

Hugs and prayers that this will help.

Kim

Barbteeth profile image
Barbteeth in reply to Kimr2081

Hi Kim

Yes pain is my constant companion...worse some days than others...if I stayed in bed all day I would be pain free...however I’m an outdoor girl and have no life as it is

I got in my horse this evening as it was lovely weather...didn’t do much but was in tears when I got back as the pain was so awful...I’m thinking I’ll have to hang up my spurs forever and the thought of that is totally devastating to me

Sorry I’m moaning again but so fed up

I’m so sorry you’re in the same predicament and I do hope you get a good response from the radiologist on 20th...we deserve better than this

Barb xx

Kimr2081 profile image
Kimr2081 in reply to Barbteeth

Yes we do and I hope we both kind find a solution. I get fed up just like you do. Plus the older my new grandbaby gets the harder it is to pick him up and that just makes me so sad. I really hope you can enjoy yourself at the wedding. I will be saying prayers that you do.

Kim

mariootsi profile image
mariootsi in reply to Kimr2081

Kim I pray the treatment works for you.

Kimr2081 profile image
Kimr2081 in reply to mariootsi

Thank you. :)

Gwennie123 profile image
Gwennie123

You’ve always been so caring to all of us

Now it’s our turn

Feel better

Watch Netflix

Nibble on chocolate

Hugs

Barbteeth profile image
Barbteeth in reply to Gwennie123

Now that’s a good combo!!

Thanks

Barb xx

Julie2233 profile image
Julie2233

Hi, hope the infusion makes you feel brighter.

I had palliative radiation to my spine mets when I was first diagnosed and it completely removed the pain and I didn't suffer any side effects.

Been wondering how you were doing Jxx

Barbteeth profile image
Barbteeth in reply to Julie2233

This is what I need and why I’ve had to suffer so long is ridiculous...I don’t think my oncologist understands how severe this pain is

Thanks for your concern and pleased it worked for you

Barb xx

Justme153 profile image
Justme153

Thinking of you today travel safely. Big day tomorrow hope and praying you are feeling good!!

Barbteeth profile image
Barbteeth in reply to Justme153

We’re at the cottage now which is gorgeous...will put pic on here

Thanks for thinking of me

Barb xx

mariootsi profile image
mariootsi in reply to Barbteeth

Hope you are feeling better! Enjoy the wedding! I'm sure it will be wonderful.

I am staying positive the iron infusion will help your energy level. I wish you could get the epidural sooner....having to deal with pain is just not fair and I feel that should be addressed first. Sending you cyber good vibes for endurance my friend ❤️

Barbteeth profile image
Barbteeth in reply to

Thanks for your good wishes...I’ve been debating about codeine vs alcohol tomorrow...alcohol has won!!

Barb xx

in reply to Barbteeth

You ENJOY❤️

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