I am seeing surgeon Monday morning and then he said they would admit me asap as it is considered urgent .Having nightmares about it now as my last hospital stay was so bad it led to PTSD and had severe anxiety afterwards. I left the hospital as early as I could barely able to stand upright because I couldn’t cope with staying any longer - this wasn’t breast cancer related by the way the care I have had from breast team has been great. At least this time I should be in a local hospital so friends can visit with food !! I have never eaten such utter **** as during my last hospital stay.In the end I just lived off toast and bananas !!
Morning ladies sorry to hear you both have had such bad nights with pain Jill that sounds awful i really feel for you hopefully Monday getting your op will make a massive difference for you
Chick i found the Mri people a bit off too i think once you have been through the system as a cancer patient you notice the difference in the compassion from staff usually the mobile scanner is extra so maybe they were doing extra shifts!! No excuse mind Jill you had an awful experience with hospital too, im sure you will be treated with compassion thjs time around
My app is nit the routine one that was October nuero doc was checking scans on new referals( hes been on holiday) and asked for me to come in on Saturday he is doing an extra clinic some answers but not sure i want them at the same time ?
Heres to a good nights sleep tonight xxx
Gosh Mishy that is both good and bad - good to be seen soon but scary to be called quicker too as obviously the surgeon thinks you should be a priority . Fingers crossed for a positive appointment for you .???
Hello all,
Jill - glad to hear that you are being seen on Monday. Not glad to hear about your previous hospital experiences. Can only hope your experiences will be much better this time.
Mushy - All the best with your appointment today. I do realise it must be a bit un-nerving to be called in sooner than expected. As you say the person has been away. They have seen your results and no doubt may have a different priority attitude to you if you are “their patient”. Fingers crossed that it is all positive news for you.
Had another physio session yesterday. Just had another check of symptoms. That’s all people seem to do is check my reflexes, movement and make sure Cauda Equina Syndrome has not set in. I was told my situation was quite common. Very aware that “Sciatica” is as common as muck but also aware that for some people it hardly causes any problems and for others it can be excruciating and interferes with all aspects of life.
Therapist kept saying that we need to get me moving. I resisted swiping him with the walking stick as I informed him of how I had kept moving all this time and that moving was now the bleeding problem but I still tried to keep active even with the continuous pain. He then said about going to the docs again to discuss pain management. I just felt more dizzy, not just from the usual drug cocktail but from the continuous “going round in circles” activity.
Anyway I got some helpful written information like “Try and find the most comfortable position to sit in” - well I never. I did get one exercise to do which is the pelvic tilt. We later clarified that I needed to get my back moving as although I was being active, due to the circumstances, my back was not relaxed. Also got another 3 sessions booked in with another therapist over the next two weeks. Brilliant - much better than waiting another couple of months.
Oh well, on the plus side, had a lovely lunch out with a friend yesterday, hair dressers today and pizza,wine and movie evening with another friend tonight. I know how to live the high life? X
It does make you feel dizzy this medical merryground - I have been on it since January when I flagged up my leg symptoms to GP and asked about bone mets - and he put my symptoms down to anxiety . 3 GP appointments ,1 phjysio appt,2 lots of blood tests ,2 x rays, 1 MRI ?1 CT scan ,1 bone scan ,3 ortho consultations ,1 discussion at MDT meeting later and a partridge in a pear tree and I still don’t know for sure what’s going on but things are an awful lot worse than when I got in the roundabout .
Good luck today Mishy .Sounds like you have a nice day planned Chick .I am getting increasingly paranoid about my leg fracturing now the shock has settled from the possible mets diagnosis Im thinking this needs pinning asap .Have stopped driving and trying to move about as little as possible until I go in for the op .
Hi everyone thanks for the well wishes app went relatively well im not categorised as an asap get her in jobby thank goodness but mri was explained very well i have an arthritis spondylitis degeneration in c spine which has caused bone spurs to form on my vertebrae which have narrowed the spinal canal in 3 levels of neck 2/3 5/6and 6/7 the last one is worst causing a small spinal cord compression if it was large i would have been in big trouble already but never the less i have to have 2 more mris of neck in flexion? (some of the talk was very technical and medical jargon to see how movement affects it, does it make it even worse, where if so, surgery would be asap, for now i have to be careful, no alcohol no falls no lifting carrying etc etc will seen in 8 weeks with results of those scans and an action plan i have been told if i start to lose feeling in hands limbs i have to be admitted but hopefully its a slow burner so to speak i also have to have a test to outrule perephil neuropathy in case i have any residual stuff from chemo which could be making the symptoms look worse, interestingly he said rads could have affected this condition!!!
He also explained there is bugger all can be done re the pain so its down to me how i deal with that ie put up or dope up!!! The strange feelings ive been experiencing in head dizziness however he wants to investigate so im having a ct of brain wasn’t expecting that but at least he is being thorough he explained that the type of surgery is risky and complicated but he does it every day and very confident it would involve fusing vertebrae together and its only done when deemed necessary its looking that way i think he just wants to make sure he is doing for all the right reasons
Phew what a day!!!
Chick seems like you have had a similar spine related discussion as soon as you have your scan back at least they can let you know im really going to have to get my anxiety in check as i don’t want to whip myself up into a frenzy over this i was thinking all things on the way home but feel a lot better now ive rationalised everything!!
Jill how are you today too lovely i hope your leg issue isn’t stopping you from sleeping i can’t believe the who ha you have had isn’t it a shame that if you have some problems with anxiety that they automatically blame everything on it, thank goodness i saw a locum as my GP was dismissal of my symptoms too!!
Sorry for the long and winding post its bloody complicated stuff!!!
On a much lighter note isn’t it lovely today nice to see the sun out and shining ??
Gosh Mishy - such a lot to take in and a bit scary too .At least you have a clearer picture now.Havent had a good day ,felt very tearful and scared about what is going on in my bones .In a lot of pain and scared to walk on leg in case it fractures before I have op to get it pinned .just want it done now but also Dreading hospital stay as my last one was horrific .?
Oh Jill its awful when you are worrying about something especially when its something you gave been given mixed messages about i really feel fot you with this hanging over you i would speak to someone re your anxiety over hospital and why im sure they will take care of you but if they are armed with an insight they will be empathic to you to make it less stressful for you, xx
Thanks Mishy - I think I may try and talk to the ward staff nurse /sister about my anxiety .I had such a bad time last year it left me with serious trauma and had to have CBT - I’m pretty strong person but being left vulnerable totally immobilised and in pain and being shouted at by ward staff broke me - I discharged myself when I couldn’t even stand upright as I knew I would get better care at home .
Hello Mishy,
What an array of information for you to process and come to terms with from Saturday’s appointment. In my opinion, at least it is good to have the detail and explanations. That is so unprofessional to hear that your original concerns were dismissed as anxiety by GP. Thank goodness someone else took you seriously.
Well I hope your pain isn’t continuous/high gradecas it is a bit unhelpful for someone to say that there is " bugger all" that can be done. Is a referral to the pain management team a possibility? How are you feeling about restriction of activities?
Take care Mishy, X ?
Hello Jill,
Just want to wish you all the best with your appointment today. Your previous hospital admission sounds horrendous. I hope you discuss your expectations of admission and treatment so that you feel confident that you will be cared for in the best way. Like Mishy, not good that GP put initial concerns down to anxiety. God help anyone who is not persistant or assertive because it really feels like a constant battle at times.
Take care Jill, X ? Chick
Thanks Chick - I just want to get on with it now .Ironically my bad is a lot more painful than my leg now - getting concerned now I know there are spine issues to and also that what them man handling me on the operating table will do - am going to flag that up at appointment - they are just seem so focussed on their own individual area - this surgeon does leg trauma so not really interested ??
Hi Jill ?? for today thinking of you
Chick it certainly is my head was spinning afterwards bht i have processed it all and even though i cant bloody do anything as such which us the biggest pain un the backside as distraction is usually the best thing for me!!! Im keeping the strong stuff for bed time i don’t want to be to out if it through day im going to buy some cbd oil my freind uses it for pain and thinks it’s good after much thought ive decided to still go to Scotland if im ok its only a few days and won’t exactly be doing anything too strenuous x
Thank you Mishy - have a horrible feeling they will admit me but not operate til tomorrow or next day after and I will sat worrying in hot hospital ward ?I’ve looked at the CBD oil for pain but it’s a bit of a Minefeild working out which one /dose etc
Not getting admitted today -had to have pre op checks and X-rays and now wait for a phone call to say there is a bed - have to abstain from food and drink after 12 everyday till just in case .Was there for hours - now in even more pain !!
That’s terrible that Jill what a carry on fingers crossed its next day or two i bet you are fed up with it all xxx
They rang and told me it wouldn’t be today so could eat normally - she said prob Thursday afternoon should hopefully know this afternoon .Ive now been left with too much time to think - and mind going to places I don’t want to go - need to be busy but have to keep still so as not to risk leg fracture. Talk about ridiculous communication the surgeon I am under is not doing the op - he told me to make sure the duty surgeon knows I need a bone biopsy ?
You couldn’t make it up could you !! They have also been asking me to pass information on between orthopaedics and breast team - they are based in same hospital about 2 mins walk away from each other ?
Which leg would you like chopping off - doesn’t it say on my notes ? Oh well maybe the left one …