Hi Smartie, hope things are improving for you too.
sorry to hear about the stuff you are going through...did you mention meditaion in one of you posts? Not sure if you have heard of Headspace? Ansolutely brilliant. And theres a whole intitial section that is ansolutely free!
just look on your pc or phone or ipad and download it. I found the initial course excellent...Sorry if you already know about it. Its a prgramm by an ex buddhist monk, it helps. Us tackle our thoughts...with practice.
hope you feel betterxx
Just wanted to check on you Blanna! Hope you are getting some relief from your treatment. Hugs, FF
Celebrate the improvement! Happy for you! FF
So glad to hear you are seeing an improvement and feeling a bit better xxx
Bianna, glad to feel you are feeling a little better, hopefully I can follow in you footsteps and feel improved in a few days. Rough time today, but bloods tomorrow and chemo Wednesday. Had Occupational Health here today for a home visit to assess mobility, getting one of this chairs to go over the loo as I am having trouble standing up from being seated in that position. Feel 92 I don't know about 52!
I hope everyone is as well as they can be.
p.s. Sun out this morning, now blowing a gale and distinctly chilly, so much for summer weather!
Well I'm in a totally different place to a few days ago. The pain has settled down, I'm learning how to deep breath if I get breathless.
Smartie, it's comforting in a very strange way that you 'get it' I don't feel quite alone. Stresshead, the oramorph really seemed to help me as well. I've not got oxygen but the deep breathing I'm doing really helps. Funnyface, it's an aspect of breast cancer that you just do not associate with it. In treating one part, it presents new symptoms that I never ever thought would happen.
Barton, I do feel improvements a week after My last chemo. Today I had my blood done then chemo tomorrow. I'm not sure how long I slept last night, but woke this morning with pain but not off the scale. That I it's self is helping me cope with this much better.
Thank you all again
Oh Bianna, so sorry to hear you have had so many troubles. I recently had two pleural effusions and couldnt breathe...i have never so felt so ill and so down. I had treatment for that and am much better now, for the moment. I had oxygen and oramorph which was a big help. I'm sure they will get you sorted soon. In the meantime please rant, rave and cry with us as much as you want. xx
Dear Blanna and Smartie, so sorry to read of your recent struggles and frights - I can only wish you both all the best, and hope that the new chemo, Blanna, helps quickly.
My thoughts are with you both.
Blanna, I'm sorry this cancer has had these scary effects on you. Not being able to breath is so frightening. I have lung mets and have had a couple bad episodes with breathing. My heart is with you! Hugs, FF
I think that's what is so shocking Carolyn, I'd gotten lots of craft paraphernalia to see me through the long haul.... Now look at me! I might just do the final insult and bling the fingers on a pink glove and blow a huge raspberry to it lol
Thanks again all,
Just writing it down helps. I just carnt see them being able to stop the relentless spread. It scares the hell out of me that 'controlled' is not an option ' comfortable' preferable. Being Tnbc adds another tick to the 'comfortable' tag. Going next week for the gem part is daunting too. I suppose if the paclitaxel hadn't exploded the tumours to spread like wildfire, I wouldn't be so traumatised.
I went from relatively low pain tumours to fire breathing rock hard crushing boulders. And to add insult to injury, sling in a couple of blood clots to boot!
I'm having some councilling booked through the hospice next week, I'm hoping some of this rage can escape.
Two weeks is all it took..... Two weeks prior normal upright body with normal aches and pains, to a wheel chair bound breathless wreck. Who needs assistance to wash dress and feed myself.
I carnt somehow see me ever getting back to that place but just worse! So how the blumming heck do you pull positivity out the hat?
I think I'll give that one the two fingers salute today.
I am so sorry to hear your pain your anxienty levels are so high and your muscles will also be getting tense I wish I could help you please try to relax which I know you will find hard to do. If it helps to rant and rave on here then do so we all sympathise with what you are going through.
Sending you loads of cyber ((((((((((((((((((hugs)))))))))))))))))))))) xxx
Oh my goodness Blanna, that sounds dreadful and so frightening.
I'm so sorry you've had to go through this.. Sending cyber hugs and hopes that things improve.
I took a few days to get my head around what happened. I was, booked in for an MRI and was in so much pain despite the effort and care by the staff. The bcn got the onc to come see me, I was struggling to breath and crying. He checked me over and said he would get me something to make me more comfortable. At this all I could do was wail pitifully, I was sobbing so this is it then? I'm to be put in the corner and made comfortable? I can feel it strangling me I want to gulp air, I need to breath I can if you do something, the onc looked blank.. I'll be dead by Friday for the chemo - I begged and sobbed. He went off came back gave a high dose of Steriods to be taken, instead of Friday I was to go in the next day they brought it forward. I almost got immediate relief from the Steriods. Hubby took all the details of meds given. I went on Tuesday for my infusion, by the evening I felt like a hard dead lump of meat was wrapped round my neck. My lymph fluid is moving, and instead of rock hard on weeny bit is soft.
I carnt write anymore, but please God I didn't want to die wide awake like that,
Im going to try and see some good in the bad, I might not be able to use my hand, but I still have the other one. XBlannaX
Oh Blanna, you've had to cope with so much change so quickly. Keep ticking off the days till you can start blasting the nasties with more chemo to reverse some of these horrible effects. Thinking of you and sending lots of kick ass vibes! Xxx
Hey Tiger & Scratch,
I had little bit more sleep tonight,very achy and sore, but not agony like it was before.
The thing for me is the utter cold panic of not breathing and moving properly, my heart starts jumping and for a moment the terror of dying because I carnt breathe takes hold. I think I need some kind of meditation to get me through these episodes would help. I'm now counting the days till I can start the next treatment and get this under control. When I was in the throws of not breathing properly in between panting, I told hubby, if I'm like this tell them to knock me out, I don't want to be awake. Pure terror.
But today Is another day, another day to adapt to the limitations I'm now experiencing on a daily basis.
Hi Blanna, just wanted to let you know you are still in my thoughts. Stay strong lovey, Tiger xx
Thanks both, I'm itching to get the chemo started, at the moment I can feel it swelling moving and getting hot. My neck to the left is rock hard and I'm finding it difficult to move around.
Carolyn, I carnt do any of my craft stuff, I've got no movement in my arm or any dexterity of my wrist and fingers, my hands are so swollen I just about managed to get my wedding ring off, now that feels strange.
Hello Blanna, so sorry to read of your awful problems. I just want to wish you all the best, and hope they get you sorted out soon. We are all thinking of you.
Thanks Ellie & Helen,
I spent a few good hours being wheeled back and fourth for my bloods today in a wheel chair, hard to think I what I was like just a couple of months ago and the change in me, I've got a very swollen loppedsided shoulder, now a large pouch lump going from my shoulder up to my neck. I'm out of breath, my voice has changed and I'm so constipated I look in the later stages of pregnancy.
My stomach is so bloated, just to add to the list of positions I can no longer get into to feel even a little bit comfortable. And what's the term? "oh mustn't grumble" lol in fact I think I am on the brink of hysterically laughing. One saving grace is I've at least managed to get on top of proper pain control. I hope it lasts, and isn't just a once off flooke. The trouble is I'm drinking plenty of fluids to try and get it all moving and it just adding to a never ending list of problems. But being on here I know I'm not alone and I get some comfort in that. Oh and I'm now having wonderful hallucinations from the morphine! Brilliant!
Hi Blanna, sending strong and positive vibes in your direction. glad your pain has subsided a bit.
Blanna I'm glad your team are moving so swiftly. There is a gem carbo thread on here somewhere so have a look - forewarned is forearmed and that! I found it very manageable apart from sickness the first couple of goes but I could manage that either tablets they gave me once I got the hang of my reaction time scale (I was stopping them too early).
Lots of love. Let's hope it kicks the uggers into touch for you.
I'm OK marirose, im more alarmed at how swiftly this is spreading, it's like each day it just grows, all I want is just to stop it in its tracks, now for me that would be a bonus.
I've got a good team at the Marsden, when I went this morning they got me a wheel chair as I was so puffed out and short of breath. I'm stuck at the moment slowly watching my hand dexterity getting worse with no grip, that's less than a couple of days.
Thank you all again for your positivity hugs and vibes I really do appreciate it,
I am so sorry to hear you are going through a terrible time with this horrible decease. Your medical team seem to be moving in a positive way for you. Please try to stay calm and stop worrying 'C' loves stress I know it is not easy keep coming here to get it out of your system rant and rave we are all here for you and we are all sending you good cyber vibes but let us know how you are.
With love and best wishes ((((((((((((((((hugs)))))))))))))))))))) xxx
I've had my appointment at the Marsden, I'm on carboplatin and gemcibatine, three weekly, then gem on different days, pain has settled down and the morphine is keeping it settled, I'm feeling more positive. Off for a liver function test tomorrow, then I have to have an MRI of my skull tumour, then my treatment will start. they said this one is a bit more aggressive and I've shown a good resistant to Se which is why they have put this one forward.
I seem to be improving pain wise now just need this chemo to do its work xxB'lannaxx
Thanks again all, being taken off paclitaxel has had an effect to, lack of sleep, my hubby done a pain sheet so we can track all the medication and dosage times to try to get some rest and sleep, pain leaves you exhausted, a few more hours would have been nice, but small mercies at least I got some. I had an horrendous time trying to do my ct scan Friday, and I think I'm only just starting to get over that, but that's something I'll post later, as it is too long to go into. My median nerve has been impacted also, so my thumb and two fingers are numb and tingling right up to my neck. Sorry I'm tired again will try to post more hugs to all xxx
Bianna, so sorry to hear your news bt hope that now you know you will get the best tretment possible. Hope your pain has subsided.
Sending loads of love and hugs.xx
Blanna what a pain! Small compensation but at least you got help when you did so they can get straight on to sorting out your treatment. I hope they start you on something new fast and you start to see results really soon.
Lots of love and hugs,
Hi all thanks for your positive words, I've just got out of three days in hospital, loads of tumours pressing on main vasculature veins in neck with a couple of clots which has left me out of breath and breathless all the time I now have them from my skull to a bone in chest 24 in total, I'm scared, all my other organs are clear. I see onc Wednesday to find out where I go from here, there is talk of vascular specialists to sort out the impacted main artery in my neck shoulder and arm. Dam this cancer.
Bianna, i really feel for you. I have jst been through a period of severe breathlessness and i dont know anything worse. Lets hope your meds have now kicked in and yo are feeling better. We all live with the fear that this damn thing is spreading and its not always easy to remain positive. I always try to listen to Marie rose who always radiates positivity, bless her. Please kep us posted. xx
just to let you know I'm thinking of you and hope you've had some sleep. Stay strong. Sending you a hug xx
I hope you get a good night's sleep and have a much better day tomorrow with your pain under control. Unfortunately this is a tricky disease and sometimes what works for one person isn't right for another. I am really pleased to hear you are being listened to and I am sure you will get the right treatment soon. In the meantime know we are all thinking of you.
Hello Blanna, I hope you don't read this until tomorrow morning, cos I'm hoping you get lots of sleep for the rest of today and tonight. Just wanted to say I'm thinking of you, and wishing you a pain-free future on these new medications.