Cutting the long story short, finally decided to ring up GP for some help.
Rang GP in the morning and was told 5 min emergency appt only today. Felt like being brushed off again but after putting the phone down, just felt I couldn’t wait for another day! Got on the phone again, to helpline this time - thanks so much for the lady listened to me sobbing!! - Suggested me just to go to GP, forget about 5 min appt, just tell them I’m on chemo and I’ve not been very well and it IS an emergency.
So walked in to the GP clinic and demanded to see a Dr! Well, I’ve never seen him before, but he was fantastic!! Given me the best treatment - a big arm / shoulder to cry on! Going to have bloods done tomorrow to check what’s going on and see him again on Wed. Was sent away with Zopiclone to help with sleep (haven’t had a good night sleep for over a week!).
Possible out come - chemo side effects, BC progression or just simply depression / stress.
I’m feeling a lot calmer now knowing some one is on the case.
Here’s hoping for a good night sleep tonight and no scary thoughts keeping me awake.
I know exactly where you are coming from I also was fobbed off with 5 min appt. considering I never went to the dr’s before all of this cancer c**p, the receptionist always say’s “is it urgent” and I always say “yes it is”.
Last week I was going through very similar to you upset/crying mainly because my mx/rads site was very itchy and sore, and I have a annoying cough (have lung mets) so phoned doctors, the receptionist told me doc could not see me but could phone me, considering I had already phoned my BCN and rads nurse both told me to see my GP, so told receptionist phone call would not do the trick unless doc had xray eyes and could see down the phone lol (sorry I was literally on fire by that point) all of a sudden she decided she could fit me in!!! Ended up having a 20 minute appt. and dealing with more than just one problem and he’s going to write to my onc. and ask for a follow up ct scan, result.
Hope you get a good nights sleep/rest, and so glad you are feeling like your being looked after, its just so important, like you said scary thoughts dominate your mind especially when you can’t sleep and you feel isolated. Sometimes you just have to be persistant and dont take no for an answer.
Sending you lots of hugs
love and light
sarahlousie xx
Well done on standing your ground even though you felt rotten!! Delighted you saw someone willing to help and who was prepared to make necessary referrals. Hope the tablets work and you get some sleep - deprivation is just awful.
In common with loads of places now, our surgery has loads of docs and you never seem to see the same one twice. It’s only comparatively recently that I’m firmer and start off with the ‘I’ve got secondary cancer blah, blah’ and stand my ground.
Anyway, I hope you get satisfaction and good results from tests etc.
Hi
All I can say is that when everything felt awful I started on a low dose of antidepressants called Citalapran and it has helped me get on with my life,acting as a gentle buffer to everything.
M1YU ,I really hope that you can somehow regain a feeling of calm and get the support that you want.
The other place that has helped me hugely is the Penny Brohn Cancer Care Centre in Bristol (you only have to pay if you want to ,or can afford it )where there is a huge range of lovely comforting pampering help. They have volunteer drivers to get you there if need be.
Esha
The Dr did say that he’ll probably need to give me something to help with my mood. So sound like I might have to give into some sort of anti depressant!
Guess we’re just trying to rule out the more serious causes like progression at the moment. My pains are certainly getting worse, just don’t know whether they’re real, my imagination or caused by lack of sleep!
Citalopram is pretty good as anti-depressants go. It’s usually fairly well tolerated with the main SE’s being dry mouth and nausea for the first couple of days. Better if you start at 10mg for 2-3 days and then increase to 20mg. Generally kicks in around 7-14 days. (BTW I can spout all this off the top of my head as I’m psych nurse and have been a prescriber for a few years).
It’s really not giving in. When you think about the mental stuff you’ve been going through every day with the cancer demon forever trying to chip away at the inner reserves you have - sometimes you just need to acknowledge that putting on a brave face and carrying on regardless isn’t always the best option. Don’t beat yourself up.
Big hugs from me as well m1yu. Sorry to hear you are so down at the moment but its good that, eventually, you got to see a professional. Why we have to battle for this I don’t know! Hoping you feel better in yourself in a few days and that any further investigations don’t show up any nasty surprises.
Nicky xx
Back from getting the results - nothing suspicious! So, it wasn’t chemo side effects. He’s sent me away with some oral morphine (very low dose) to help me with the pain. My next appt with my onc is on the 13th of March and he doesn’t think that he can bring that forward. But he’ll write to my onc and hopefully that will give me a better chance of pushing for some further investigation.
Zopiclone did wonders and I had 2 good night sleep and my mood has lifted. So, no anti-depressant for now!
He’s also referred me to a support nurse so hopefully will get a call from her and she’ll point me in the right directions.
… ok, pain is not chemo side effects, nor it is caused by depression, that only leaves one possibility maybe… and it’s up to my onc to find out…
Was told in the end not to bury my head in the sand and hope it will go away. They are there to help.
Thanks for all your support! I know it probably won’t be good news, but I felt like with all the support I’ve been given, I can cope with whatever that may come my way.
I’m so glad you have had much better sleep - it’s amazing how much difference it makes. The referral to a support nurse is excellent news too and I’m sure it will be very helpful. Sometimes we just have to admit that we need help and stop burying heads in the sand but it is not the easiest thing to do. You’ve made that first step now and will feel better for it and the fact that someone is listening to you.
I hope the pain eases a bit now you’re not as stressed and fingers crossed it is nothing or at least not as bad as you fear. It’s natural for us in this position to always think the worst. Anyway, if it does unfortunately turn out to be progression, you know you will get tons of support, help and advice from this site.
My onc didn’t get the letter from my GP:-( So, had to explain to him what I have been through myself! Both onc and I agreed that we could feel the right neck is different to the left neck. Sort of a lump, could be swollen lymph modes pressing on nerves, which could be what’s causing the pain.
Xeloda and Zometa have been put on hold until scan results (MRI + PET) come back next Monday hopefully. If localized progression, rads will sort it out. If more progression else where, then it will be a change of chemo. It could just be tension, but more likely to be progression considering the pain I have been in and my medical history:-(
At least he has taken it seriously and is doing something about it.
More waiting, but one step in the right direction regarding finding out the cause of the pain I would say.
Today’s MRI showed weakened vertebral on the right neck. But that’s not much difference compared with the scan I had in 2009. We’re assuming that’s what’s causing the pain, but awaiting PET scan next Tues to give us a better ideal.
Onc is going to discuss it with a specialist in spinal surgery to see whether surgery is the best way forward. But we’re hoping a blast of rads to sort it out… unless PET scan shows stray cells elsewhere.
m1yu it is one of those odd things I have found with MRI’s and my spine mets. This last time leading up to clinic appointment with onc I had been struggling with a new area of pain around bra level on spine. As usual I wrote a note of things I wanted to discuss including that pain. I was also getting results of mri scan. The onc was delighted to tell me that over the last 3 mri scans of my spine things were staying relatively stable. Just one small problem at T6 where there was just a slight increase in size of a tumour there pushing into the spinal cord. I must confess I was a bit cross at what I felt was a casual attitude and I showed her my notes of what I wanted to ask cos I thought she might think I was making it up that I had all that pain. But she was very good and said it was definitely related to the problem at T6. I did have some 5 sessions of rads to it and had the best result ever from rads for pain. By the 2nd day it stopped and has been fine since. I don’t think this was imagined - I had seriously bad pain for 3 months, every day. It all started the day after I had a nerveblock for my lower spine and I think it was from the position I had been curled in for a long time. Sorry I have gone on a bit but just wanted to encourage you in saying the tiniest bit of change can trigger pain and that rads can make a lot of difference. Hope it does for you.
Thanks Dawn for replying. Obviously I’m hoping rads will sort it out. The fact that he is considering discussing this with a specialist in spinal surgery is kind of scaring me a little.
Obviously I didn’t expected it was the vertebral causing the pain… err, I also don’t remember I had a scan on my neck in 2009!! (Probably done after weeks I was diagnosed when everything was a bit of blur.) But that does kind of fit in with the kind of pain I was experiencing in the last few weeks.
Anyway, better not think too much, just wait till PET scan comes back.
Just had a call from my onc. The decision was to do the spinal surgery first, then rads. He’s going to set up a meeting for me with this specialist to discuss the benefits and risks involved, BUT the final decision would be mine.
I was told the recommendation was made due to the fact that it has been there for a while, and it’s causing problems and it might cause more problems in the future, rather than it’s in very poor condition now and I HAVE TO have it done.
I’ve never ever had any sort of surgery in my life, even the thought of it scares me. It sounds like it’s going to bring me huge benefits, but I’m not sure I can face up to it.
There’re tons of questions going through my head at this moment. Any recommendations, suggestions for questions I should ask, experiences… all welcome! Feel free to PM me if you don’t want to share it with others. Thanks in advance.
Had my appt with the spine specialist today. He was lovely!!! Put me at ease from the very start. He showed me the MRI image of my neck of 2009 and about a week ago. It was quite shocking to see!!! He was really surprised that I wasn’t in much pain back then.
The main problem is in C7 - partial collapse! So really I don’t have much choice apart from the op. The good thing is that my spinal cord is still intact. He tested my reflex and it was all normal. There is also a slight problem in T1, but that can’t be accessed from surgery, so only rads for that. He explained what he’s going to do very well and was very patient with my questions and honest with his opinion. He said that if he was me, he would go for the op because the benefits would far exceed the risks.
He’ll be speaking with my main onc and get my PET scan results. Will also need to have an MRI scan for my whole spine and my brain just to make sure.
I’m now having this horrible MRI image of my neck in my mind all the time and I might be having lots of nightmares about it!!! My pain has certainly got worse since the MRI scan and I’ve got this constant shooting and sharp headache. I’m now just hoping the brain scan will come back clear. Having a home visit from a hospice nurse tomorrow, so hope she’ll make me feel more comfortable over the weekend and before the op can take place.
I had no idea just over 2 weeks ago, a trip to the GP has developed into this! It just doesn’t feel real and I really have no idea what they’ll discover next.
sorry you are feeling so upset just now. I do understand what you mean about seeing the MRI of your spine. Mine has damage to almost all the vertebrae now, and last month I had rads to T6 - an area I hadnt realised was starting to give problems until I was having a nerve block for the lumbar area and the next day the T6 kicked off. The pain went on for several weeks and at times I thought I might have cracked a rib or something! When I saw the onc in clinic she gave me results of a previous MRI that showed a tumour had grown a little more at T6!!! well that matched up with the pain hence the visit to the rads consultant. For the first time for me the rads worked and the pain stopped! But like you say it is truly shocking when we see it in black & white! I suppose to the oncs they are used to it and it probably isn’t that shocking. But they don’t mess around if there is a risk of the vertebrae crumbling and affecting the spinal cord. I think it is amazing the preventative stuff they can do nowadays and how it improves quality of life for so many. I am sure you are right to go ahead with the surgery before it becomes desperately urgent because you don’t know then what damage it can do. I think it is hard for you because you say you haven’t had surgery before. I have had quite a few ops and they have been nothing like I have feared. I suppose for starters you are out for the count so try not let your imagination run too wild LOL. Then I have found that will all the ops pain has not even been an issue. If you are finding the whole thing is stressing you out don’t be afraid to ask for some help with that. They can give you some meds to calm you down - and I wouldn’t wait till you have an op date for that - if you need it now then just ask. The macmillan nurses are really good to talk about anything like that too.
Good luck and I hope the meetings they are setting up to discuss further will help you.
If localized progression, rads will sort it out. If more progression else where, then it will be a change of chemo. It could just be tension, but more likely to be progression considering the pain I have been in and my medical history:-(