Currently experiencing what I can only describe as an 'attack' of pain... it's happening more frequently, usually waking me in the night. It's 4am 
Had Dihydracodiene only a couple hours ago, but still woke like this. Took paracetamol about 40 mins ago and have just taken ibuprofen with a yoghurt drink about 10 mins ago. It's only just starting to ease off. The usual pain, which can be bad enough in itself, is like a 'toothache' sort of pain, but when this happens it's combined with a kind of 'salt in a wound' sort of pain and it is excruciating. I honestly wonder whether to go a+e when this kicks in, but chances are it would have faded by the time I actually got seen.
Has anyone else had to deal with this pre treatment?
Oh, that’s interesting about the X-ray Irene rather than the DEXA scan. If I had a dog, I couldn’t walk it…I went to the supermarket today-on a stick to get to the car with my partner driving. And in my new power assisted wheelchair to get round the shop.
We came home and I couldn’t even help put the shopping away. Nor could I get my socks on this morning-I have a gadget to help do that but I put them on squint. I’m normally on my own so would have had to put up with it, but luckily it’s a Saturday and I’m not on my own so I could get it sorted!
Listening to what you’ve said, I’m going to consider requesting an x ray, so thank you for your help Irene..much appreciated. I had to have a number of scans, mri, ct and ultrasound last year when I had my stroke and the staff were wonderful with me-the gibbering wreck in the wheelchair! The year before, when I had my blocked bile duct I refused an mri, even when I was offered sedation. The fear is just beyond belief for me, and it’s very difficult, which doesn’t help!
Sarah xx
Oh Jen…I’m so glad you got some sleep and were without pain for a while. It’s just miserable if you can’t sleep with pain.
I’m really hoping that treatment starting will help. Personally, even though my cancer was different, treatment-particularly radiotherapy- made a huge difference for me within a couple of weeks.
Sarah xx
I don’t mind at all Jen, don’t worry! It started with one of my mri scans. I went for pelvic mri and had been through these before. This time, I had the scan and staff came in and said I also needed an abdomen and thorax scan. Obviously this took longer and I wasn’t expecting it.
The whole thing was very noisy and seemed to last for an eternity and I started to panic. I had to force myself to stay still though every instinct was to run. When it was over, I could hardly stand, and I remember staggering out of the scanning room, holding onto the wall. I was just overcome by fear..I wondered why there was the extra scan, I assumed and was terrified my cancer had spread. I just couldn’t get these thoughts out of my head and I said then I would never go through this again.
I started of have flashbacks of the radiotherapy waiting room, and the room where I had my treatment and even had dreams about it. I can still see it all clearly in my mind after more than 6 years. I cannot even look at a picture of a scanner without panicking.
I had no issues at all having a petscan, and it seems it’s the mri that’s my issue. I had a ct scan in hospital very soon after surgery, but I was effectively helpless at that point and could hardly move. I let them do it, and was dragged onto the table from a bed. After I was discharged I didn’t want to go through any more scans. Then I needed a ct scan some years later because I had pain, nausea and there was clearly something wrong. I got as far as the door of the room in a wheelchair and was in tears. It was overwhelming.
My partner was there and persuaded me to go in but that took a long time. Eventually I did it and got my diagnosis of gallstones. My fear had been cancer again so I was actually delighted!
I then had to go through 2 ERCP procedures which involved a camera down my throat to investigate my bile duct. By this time I had 2 stomas and it was very uncomfortable to lie on my side with my legs up. I became really anxious because of the gagging in my throat and being mainly held down by the nurses to keep still. It failed the first time as they couldn’t unblock my bile duct so I had to do it again a week later. The doctor gave me breathing exercises and upped my level of sedation but this didn’t work for me. However it was successful, and my gallstone was removed from my bile duct. I said I would refuse to do it again so was glad it worked.
It’s basically fear of finding cancer again-simple as that. My surgeon is very understanding and doesn’t force me to have any mri scans now, as she knows my level of panic is so huge. I simply can’t do it. When I had to have my gallbladder out Iin 2033, I agreed to an mri to check surgery had been successful as I knew the surgery was very risky for me after my exenteration. Again I was crying like a baby and wouldn’t go in the room but the staff helped me and assured me it wouldn’t take long. They were right. Brain scans last year after my stroke were also short and I coped because I had to. Still crying like a baby but the stroke had left me unable to speak properly and I knew they needed to find out how bad it was.
I can’t control my fear, even though I know it’s not rational, because I’ve nearly died several times in the last few years- I had a pulmonary embolism from chemo in the mix too, and wasn’t expected to survive that and all these things have left me terrified about what could be next! So that’s why…I will never have more scans unless it’s a really serious situation.
Sarah xx
