Well, all is resolved in as much as it can be in our world.
Saw registrar 2 weeks ago and she ordered a MRI and I went back today for the results. Good news - it 'only' showed up the vertebrae collapse which had been treated with the rads and although there is some bit of that collapse near the spinal cord, it's not damaged it. As my back has been a lot better and I feel more like my old self now the rads tiredness has worn off for the most part, she's not referring me to the neurosurgeon. We are working on the basis that it can be kept in reserve til things get worse and that suits me fine!! I'm just being careful with what I do now and not lifting things etc as that may have been what gave me the agony the other week.
Next checkup in 3 months and I can contact them at any time if I have any issues/queries.
Thanks for all your support ladies.
Thanks hatty! Going to take it easy this week again til I've been to hopsital - good excuse for being a lazy so-and-so.
Like your thinking Sue (although only the first bit - not sure about the prom run at all...) and the meet-up idea as we keep mentioning it on chat but then another week slips by. Sorry to read you were wiped out yesterday. Please don't worry if you aren't up to it on Monday, I do understand. These sudden exhaustion periods are very frustrating but I think we need to learn how to embrace them and work for us instead of against them.
My back was bad again yesterday although not as bad as Weds fortunately. Had a few kips during the day and then slept really well too - 6 whole hours without the need to get up and go to the loo. That's what I call a success!!!! Today the pills are keeping it under control so am hoping they will sort me out til Thurs appt and that it's all been a delayed rads reaction and another bit of the zapping has kicked in...
Hope you are all enjoying a lovely weekend and see you Monday Sue (will check on cafe opening times tomorrow and let you know).
Hi Julie, Julie, Liz and everyone
I would love to treat you all to a nice big cake! The best ones at our local bakery are called 'Bee Stings' and they are full of a lovely almondy cream in the middle and a bit of caramelised fruit on the top, plus they are BIG! They do lots of other lovely things too so may have to take a selection to Liz, I think it will do wonders for her back ache and I will take her for a little run down the prom afterwards!!!!!!!
We really must arrange a meet up for the girls in the northwest - everyone who wants to who are within striking distance of Preston! Send me a PM if you want to joinin and I will see about suggesting some dates and a venue!
Ggggrrrrrr - just wrote a post and it disappeared so here's attempt 2.
Had a much better night's sleep with the stronger painkillers so feeling quite a lot better this morning. Thanks Julie and Julie for your pms - very touching of you to be so concerned. Docs rang this morning to say they'd sent fax off and onc's secretary emailed to say she will be looking out for it. However, I may just wait til my onc appt next week to see the big chief herself as long as the painkillers make things manageable. The kidney thing did cross my mind but so far, touch wood etc, my waterworks appear to be ok and I'm drinking water to keep my system flushed!
It's a lovely day here so when my OH comes back I may have a gentle stroll on the prom and enjoy the fact that spring appears to be on its way at last....Sue is coming over to see me on Monday so I am insisting that cake is on the menu !! It can have a bit of fruit in it so that goes towards the daily intake.
Have a good day all and thanks again for all your replies and concern.
Sorry the pain has got worse but gload things seem to be in hand, hope the extra painkillers work.
As I said on livechat last night, I did get flare that settled but yours sound really horrid so glad you've taken action.Maybe trapped nerve, deferred pain, all sorts of possibilities really but completely understand your worry.Keeping everything crossed, let us know how you get on. Hope you have a comfortable night and get some sleep. xx
Susie hope you had nice time in France. Do you think you could make a detour down to the south coast with that cake!?!
I have finally surfaced after my weekend in France and have just read your posts. Sorry, I didn't get to speak to you this pm when I rang and left a message, I will try you again tomorrow. I hope you have a more comfortable night, I know what it's like to have severe back pain - not nice and very scary. I might just have to nip over to Morecambe and bring you a big cake!!!!!
Big hugs, Sue x
Juliet's right, it does sound a bit like kidney infection pain. I've had a couple kidney infections and both times I though it was muscular back pain until it got really bad, and I only realised what it was when the pain got very intense when I needed to pee (sorry if that's tmi). Keep a look out for that symptom just in case.
Have you got any other symptoms? Sounds a bit like kidney infection pain !!Have you been running to the loo more or anything, leg pain ??
I hope it gets sorted.....
As I said to you last night, I did get a painful flare up following rads.
GP (saw a nice one who actually reads your notes first!!) has increased painkillers and also sending fax to onc asking that I can be seen asap. That will reach onc tomorrow morning. At least there's no numbness/tingling so can't be that bad !!
Thank you all very much for your best wishes.
I'm sorry to hear this Liz..hoping you get some answers asap and you can get this pain sorted..xx
Well, quick update. Onc is on hols this week so secretary passed message to registrar who has advised contacting GP to see if they can do any investigations and bring forward my appointment from next week if necessary.....OH ringing GP as I type.
Sorry to hear that you have had this flare up - and definitely I would contact your onc and make sure you make it clear how bad the pain is. It may not be related to the area you have had treated even and they need to look into it again. Myself I have suffered a lot with spine pain and havent found any relief with rads. Maybe the single blast wasn't enough - did he give you the lot in one blast that others might have over 5? I hope you find them helpful and get some answers quickly.
Thanks for your advice girls - it's not like me to be concerned enough to ask for help !! I have just emailed the onc's secretary as she's always been very helpful in the past. If I don't get a reply by the middle of the afternoon, I'll ring the helpline and get their advice. GP surgery only do 'phone consultations nowadays for on the day queries and didn't know I had mets 2.5 after diagnosis !!
I would contact her if it were me Liz - you need some urgent help with pain at the very least.
I have no bone mets advice but i do think you should call/email the onc's sec today and try and get an appointment this week, why wait as you are obviously in pain do it girl
I am sorry to read that you are having a difficult time at the moment, don't forget you can phone the helpline to talk your concerns through with one of our specialist nurses on 0808 800 6000, the line is open 9-5 weekdays and 9-2 Sat
I have had bone mets since primary diagnosis and until recently they haven't caused me any trouble. I started getting deep aches in my right side and stomach late last year and there has been slight spread in my spine so onc did a one-off rads blast 5 weeks ago. That helped a lot and I thought it really had done the trick. However, Sunday night my back started hurting me on my left side, felt like a pulled muscle. Yesterday it got gradually worse throughout the day and I just couldn't get comfortable.
I did mention this on live chat last night and others have had a later flare up of pain and then it's gone again. Things seemed better after a warm bath and some painkillers....but this morning I could hardly move my back was so very painful. Felt like I'd been kicked all over my left side and that my back would snap if I bent over and then tried to get back up. Had some co-codamol and eventually they kicked in and I was able to get out of bed slowly. My concern is that the mets have got worse and/or I've done something without realising that has caused damage.
My post-rads checkup is Thurs of next week (onc has clinic at our hospital once a week) but I'm wondering if I should email her secretary to say I've had this sudden agony - don't use that word lightly - and is it something to worry about....
I'm on zoladex, arimidex, zometa and adcal2 at the mo. Any advice/experiences welcome.