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possible bone mets

Community Champion

Re: possible bone mets

I can totally sympathise on the pain /discomfort front Chick - finding a comfortable position to get any sleep is a challenge for me.I have now aggravated whatever is going on in my ribs as getting in and out of bed /off sofa requires me to haul myself up putting strain on my upper trunk -I feel like I am In a straight jacket (I might be if I don't get some relief soon ) .Hope you are feeling a bit better today .x
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Member

Re: possible bone mets

Hello all,

 

Jill - glad that you are now moving a bit. Sleeping on your back - ouch that made me cringe!  Hope the bleeding stopped ok and wounds healing as well as can be expected. 

 

Mishy - can understand the anxiety about the precautionary head CT.  Fingers crossed for your forthcoming action plan.

 

We might have different things going on but I think we can all agree that the pain and discomfort is just unbearable at times.  I am having such a hard time sleeping during the night.  The pain can intensify whether pain killers or not. I have to keep getting up and walking around.  I make a drink and even have a snack and then put my tablet on in bed and distract myself watching things.  I tend to fall asleep through the programmes so have to keep restarting and it puts me to sleep again.  Never mind white light being bad for sleep, being in pain is much worse.  I have got through "Trust", "The Killing Of Eve" and most recently "The Slap" amongst others! 

 

I had my best sleep for months the other night, but only after taiking dihydrocodeine with a shot of Jack Daniels.  I know - not a good habit and I don't want to end up an addicted insomniac  but maybe every now and then for some relief.  The day after, i.e. yesterday, was the first day I felt like going out properly  for over a week.  Spent the day in town but every step  was painful.  I could not even sit down in peace whilst having a coffee.  When I was eating my tea later at home, I ate some of it whilst squatting on the floor as it was the least painful position. 

 

Physio and that say about keep moving and doing normal activities but I just think they do not have a clue.  If I could do normal activities, then I would not be needing their services. I would like to see them continuing with their normal activies of, e.g. work, if they were experiencing the same thing.  This certainly is not getting on with life after BC treatment - I am beginning to climb the walls in frustration (or if only I could climb a wall!). I have an appointment on Monday.  I will wait and see how I feel but at the moment I think it is pointless continuing with the bits and pieces physio service. 

 

Take care all,

 

Chick X

 

 

 

Community Champion

Re: possible bone mets

It's a slow process isn't it Mishy .Good that you had a caring person doing the scan - makes all the difference .Im in a lot of discomfort tonight - back ,legs ,ribs and hips all hurting .Have had to hit the strong painkillers but they make me feel wiped out the next day and it's a drugged sleep is better than none but not very refreshing 🙁Hope you 2 are managing some pain free rest 🤞🤞
Member

Re: possible bone mets

Sorry for the typos my fingers are a bit nimb
Member

Re: possible bone mets

I know Jill i hope you get sone clarity soon and when your leg heals im sure it will be better had my head ct today with and without contrast dye, iver quickly but was feeling anxious even though its a precautionary scan i can't help with the what ifs
Spine wise i have my 2nd mri of c spine on 9th tgen my EMG in 11th so once tge nuero surgeon has reviewed them i will get an app with my action plan the lady today in ct was lovely so person centred she knew my bc history as i had to fill in the check list and prior scan questions wanted to know when i had it and which part of body so after explaining that it was a radiotherapy planning ct she was totally sympathetic to the scanxiety and wished me the very best made me a cup of tea before i left, these occasions restore my faith in the NHS although i have had nothing but the best with the bc team i fiund gps can be less than sympathetic mine had me down as neurotic when there was an actual problem thank goodness for locums and then theres your experience of late Jill and Chick which makes me think some shake uos need ti happen it must be doen to an overstretched system not enough man power etc but nit good when you are on the receiving end
Take care lovely ladies Jill keep that chin up x
Community Champion

Re: possible bone mets

Thank you Mishy - moving a little bit better today - had clips out of wounds - hoping bleeding will now stop.Sleeping on back is not great for back pain but have no choice ☹️.Nothing through for spine issues yet .Hope you and Chick are coping ok with pain and discomfort - seems to take an eternity to progress things even when "urgent " .

.
Member

Re: possible bone mets

Hope you are feeling a little better today Jill xx
Hi everyone x
Community Champion

Re: possible bone mets

Thank you Jencat .
Member

Re: possible bone mets

Hi Jill, I'm so sorry that you're going through such a horrible time at the moment and just wanted to let you know that I'm thinking of you x

Member

Re: possible bone mets

Jill i agree with Chick, it has been handled incredibly insensitively and i really do hope its not the case with your results and will be keeping everything crossed for you x
I never watched it i have recorded the episodes to watch on a binge watch im planning in trying to keep it for the recuperation period if i can wait that long haha everyones been talking about it, im currently watching big little lies on sky Atlantic with Nicole kidman and Reese Witherspoon its really good xx
Member

Re: possible bone mets

Hello all, 

 

Welcome back to posting Jill 🤗 🤗 🤗 

 

That's 💩 about the pain and mobility.  Hope  you get full results soon and all is clear.  Fingers crossed for you Jill.  I would be mentally climbing the walls wanting to know one way or the other. .  It has been too long for you in my opinion and I find it unacceptable. 

 

Hello Mishy,  Hope you are feeling as good as you can be today. 

 

Going off subject.... Did you see the final Bodyguard episode?  Jed Mecurio is ace in my opinion - I was an absolute fan of Line Of Duty - Keely Hawes got blasted in that as well! 

 

Take care all, Chick 🐣 X

 

 

Community Champion

Re: possible bone mets

They said 2/3 weeks post op for follow up .I will get sent an appointment re spine - from a different hospital .Im expecting breast clinic to ring re biopsy results - not a phone call Im looking forward too as it looks like bad news is on its way .
Member

Re: possible bone mets

Jill when will you find oud what is happening aee you scheduled in for an appointment for check up etc, i suppose it won't be good to give you any more surgery till you are healed from this one it aounds really painful Jill
You should apply for pip too as you are not exactly in a position to work and it could make life a little easier for you
Sounds as if you have lots of thungs ti help you get around the house i do hope you stsrt to feel a little better and in less pain soon Jill x
Chick that lady sounded so unprofessional as if she was kept back just because of you
Its sounds as if you might as well wait and get it dine NHS route as there doesn't seem much difference
With the injections i know you can only have them done 3 times i knew someone that had it done it did help lasts a few months and as i say she was told she was only allowed to have it 3 times i suppose you could get some relief whilst you weigh up the benefits of surgery
Community Champion

Re: possible bone mets

Sounds like I will have a bit of a wait then re spinal issues even if seen quickly .Since having leg done virtually impossible to find a comfortable position to sleep in as I have no choice but to lie on my back .Strong painkillers work but make me a zombie - had oromorph im hospital a couple of times and on both occasions made me feel very odd and heart racing away .I know have nearly the full hit of mobility aids - crutches walker ,wheelchair ,toilet frame and commodes 😳
Member

Re: possible bone mets

Hello Mishy, Jill and anyone else,

Really glad Mishy that you have got appointments through and you know what is happening. Of course, I would rather you did not have to have any appointments at all.

Have had a few days of despondency but will pick myself up again no doubt. I was upset to miss my trip away and meet up with some family I have not seen for a few years.

The person I saw from Spinal Services irritated me when she rang with the MRI results and to tell me the outcome of the MDT meeting. I had just been dosing late afternoon (pain had been quite bad at night and had to keep getting up nearly every hour so grabbing sleep when I could). When she rang, I was disoriented and thought it was the next day. I said on the phone that I was feeling a bit out of it etc. OMG did she not make out that she was a bleeding martyr and here she was at nearly 7pm ringing up when she should have finished at 5 and how she would like to rest. What the F did that have to do with me! I didn't ask her to ring over her time etc. I use to work over my time a lot but can't remember trying to make staff or clients feel bad about it!

I got some stronger Capsaicin cream from docs. However, she did not seem to think there was one at first - so glad I did my homework. However, I think the fumes can irritate my throat but ok once I am covered 😊

I have tried to be as active as possible, but to be honest, I have had the best relief from resting more this week. I have even managed to lie on my back and also on my right side a bit without wanting to cry today. I hope this lasts.

I checked with private hospital here about getting the xray guided nerve root injection privately. Oh dear, it would be about a month before I even got an initial consultation, never mind an injection. Then I read it could work, may not work, can make things worse, can take weeks to work, is only temporary blah blah - think I may as well save my dosh and wait for NHS consultation. After all, it's only another 8 weeks if I am lucky, so only nearly nine months from when it all started!!!

Mishy, I agree about treatments taking their toll. Before BC, I was very active exercise wise, yoga, swimming, walking, resistance training. After BC treatment, I am oesteopenic, short of breath more than ever, and using a walking stick despite trying to be active again. Yes I do think the treatments like chemo, Herceptin, Anasty, Bishphosphonates all take their toll in different ways.

Anyway, last episode of the Bodyguard to look forward to watching tonight, and a roast chicken 🐔 dinner - only trouble is I still have to cook the latter... 😊 X 🐥
Member

Re: possible bone mets

Chick another one of us with spine issues!! No wonder you are in so much pain prolapsed disc not good, well all my apps have arrived head ct scan next Thursday then on 9th the 2nd Mri to c spine and 11th nerve conduction tests i think i def over did things as still feel quite disoriented in my head with a wobbly feeling at top of spine and of course the pain! I suppose by i get results back ir will be about the same time from 1st app to surgery too probably a similar op apart from mine is cervical and yoyrs is lumbar is nit a prolapsed disc with me though its spurs and mine is a corrd compression not nerve root both equally aa painful no wonder you have been climbing the walls too
I hope you can get away but if not going to make you feel worse
Jill if you see this sending you my very best wishes and thinking of you xx
I find it really interesting that quite a few of us bc ladies are having spine problems as jills scan has shown up a few things too i wonder if rhe treatment could have made us a little more susceptible due to bine strength its some im very curious about, it doesn't make any difference as it was a no brainer had to have it otherwise i might not be sitting here now im eternally grateful but still curious all the same!!!
Take care ladies xx
Member

Re: possible bone mets

Hello Mishy,

Apart from the accident, it sounds like going away was a tonic for you. How are you feeling now?

I was supposed to go away this week i was really looking forward to catching up with some family. But no way can I undertake a long journey. I still don't quite undersrand how I manage to return, in August, from my last jaunt.

Eventually got a phone call follow up from Spinal Services yesterday. MRI shows prolapsed disc. Will be offered Nerve Root Injection and to be put on Surgery Appointment list for possible Decompression Surgery. Not holding my breath - the former can take up to 2 months for an appointment and the latter 3 months. Not keen on the surgery but I think I would try the injection. However, it may not work and could make things worse. You would have thought they could have offered an earlier appointment since this originally started in March and they know I have had issues with pain killers. I was looking into private treatment but it seems relatively costly.
Just feel a bit left on the scrap heap. This really isn't living.

Anyway, hope you are faring better
Chick 🐥 X

Member

Re: possible bone mets

Hello Jill,

Hope you see this if you are managing to peruse the Forum. Just wanted to send you best wishes and hope you are feelibg a lot more comfortable.
All the best, Chick 🐥 X
Member

Re: possible bone mets

It waa awful had a lovely time aside from that lota of sight seeing and went on a lovely loch cruise of Loch lomand truly breathtaking its just a shame that afterwards we ran into the accident so tragic
I feel a little better today i think sitting in the aame position got me yesterday
It waa also lovely to be around people who didn't know about my bc history so no one qas asking awkward questions met some lovely people at the hotel too hit lucky with the weather it did rain but not while we were out and about
Hope you get some stronger pepper cream and hope you are not suffering since the acupuncture!!!
Jill hope you are feeling OK after the op and keep yiur chin uo sending lots of positive vibes your way xx
Member

Re: possible bone mets

Hello Mishy,

The accident sounds awful - the poor girl and anyone else involved.

Not sure how Jill is doing - but if you are reading this Jill then positive best wishes to you.

Sorry to hear you are in pain Mishy. It is so wearing isn't it. Sometimes the constancy and level of it just makes me 😢. Physio gave me an acupuncture treatment yesterday. I was warned it may initially make things worse. I was in constant agony yesterday. Can't get another appointment until 1st Oct though so 2 weeks between treatments may not be great. Anyway need to get ready for GP appointment as I want to know if there is a stronger chilli pepper cream available (but don't want the Patch) . Need a giant pot as at the rate that I I am going, I need a tube per week.

Take care Mishy,

Chick 🐣