Have you experienced any pain in your arms or across your shoulders Jill x
U take it that means you are getting your op Jill, ? sending you a virtual ?
Hello Jill,
I am assuming they have now admitted you. MRI results must have sounded more confusing and scary on top of everything else. I hope you are getting your op and they do that bleeding official bone biopsy. I find it hard to think that they would treat someone with highly suspicious bone mets in the way that you have been treated. On this occasion ? NHS performance.
Hope any pain is now under control and that you are being treated with the respect you deserve and in a manner that reduces your anxiety of being in hospital.
All the best to you as always,
Chick ? X
Hello Mishy,
So sorry to hear about your touch and holding/gripping capacity being affected. That is so debilitating on top of everything else. I hope it has got a bit better for you. The only issue I have with my hands is a sore 2nd right finger that just started a couple of days ago. I am hoping it is just because of gripping onto the walking stick with dear life at times.
By the way, I had docetaxel too. Suffered awfully at the time with bone pain from the effing GCSF injection (refused all subsequent ones - good decision for me) and then neuro pain, especially in feet/toes especially near the end of treatment and after completing. Have always been left with minor numbness and pins/needles round toe area and get a little pain at fingertips but nothing to write home about. By the way, when you said “Abraham”, did you mean “Abraxane”?
I am still managing without regular pain killer tablet cocktail - have asked for more ? pepper cream. That “stoned” feeling has just about disappeared. During the night can be a challenge with waking and pain but I just get up and walkabout a bit. Did take a dihydro during last night, not so much for the pain but in the hope it would make me sleepy!! The occasional one seems ok. I also have found sitting on my knees and then in between them (like a ?) seems to help! Oh the things we try!!
Best wishes to you. Have a lovely holiday 
? in Scotland,
Chick ? X
Waiting to go down at 2.30.Mishy I have had pins and needles in my hands .I saw a anaesthetist and they are going to to be very careful with my neck /back and won’t be having a spinal - so glad I got MRI done .Hows this for a head**** - anaesthetist says - oh yes secondary bone cancer ,half hour later - surgeon -" oh I really don’t think your leg is secondaries from MRI … you’re dying ,no your not ,your dying ,no your not - how many times !!!
For Gods sake just as well you had the scan yes my hands arms pins and needles of course was dismissed for a while and put down to chemo mri showed different so pleased i gad it dine and for you too as you say they know what to not do in surgery so ? mind i tell you what re the miscommunication they need to be clear as its nit just bloody arthritis they are saying you have best of British with your op Jill i will check in on you later xxx
Hi Chick yes i meant abraxane haha typo error i gad a couple of them very similar symptoms to doxetaxol but also with hair loss like with fec but didn’t need the jabs with that i had them throughout chemo till i went over to abraxane as it doesn’t deplete the nuets x pleased that stoned foggy feeling goes i just hope im not in too much pain whilst im away packed the drugs just in case i definitely think my problems with fingers are a combination of chemo and my neck things i hope your hand is OK any sign if results iff your mri poor Jill’s showed up some upper spine stuff too its interesting that after having intensive treatments for cancer that some of us are having these problems im nit saying it caused it but maybe it made something thst was already there worse!? Thats my theory
Keeping everything crossed it isnt pouring down in Scotland haha
Jill hope you are feeling OK after the op and getting plenty of sleep and are coping wiyh everything sending you my ??
Hi Jill how are you doing after your op i hope everything went well for you
Chick hiw are you doing too, hopefully not in too much pain back from Scotland in alot of pain now i need a rest after my break!!!
Definitely going to have to take it easy next few days as feel like my neck is really going to give me hell after being away it didn’t help that yesterday tgere was a terrible accident in loch lomand with a young girl riding pavilion who was also 7 months pregnant an air ambulance took her to hospital but i don’t think she survived the road got closed and driver had to reverse drive to nearest turn pount with police escorting then basically had to go right out of rhe way to get to hotel probably about 65 miles and we had been 15mins away from hotel but obviously with the accident the road was closed off so tragic im home safe and sound but can’t help think about that poor girl x
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 ?
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
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
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
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
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 ?
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 ?
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
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 .
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
Thank you Jencat .
Hope you are feeling a little better today Jill xx
Hi everyone x