Wednesday, 3 May 2023

Update on my Latest Scan

 My consultant sent me for a scan to look for paraneoplastic signals for my pain in my chest. It went well and it came back almost clear. 

Firstly there were no issues in my chest, stomach or lower abdomen. Good news, my 'new pain' is not caused by cancer. I still don't know what is causing this pain but it looks like it's here to stay and yes, I'm getting used to it now. I've now got another new pain in my left thigh and groin but I'm so hoping this is a strain and will ease off in time. I don't want to get used to any more pains thank you very much.


The scan did show up a nodule on my thyroid which may or may not be cancerous. I will need another scan with contrast to find out. If it is it's one of the cancers that is easy treatable so I'm not stressing out about it. Plus it's been weeks now since it was found and they still haven't called me back in, so it can't be too serious can it! 

This is what I found on the NHS website:

Are thyroid nodules something to worry about?
The vast majority — more than 95% — of thyroid nodules are benign (noncancerous). If concern arises about the possibility of cancer, the doctor may simply recommend monitoring the nodule over time to see if it grows. Ultrasound can help evaluate a thyroid nodule and determine the need for biopsy.




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It's Never Ending Catheter problems

 Lucy has had a catheter for nearly 8 months now. The district nurse comes every month to check her and she has the catheter changed every 12 weeks. After the first change she had problems and we had to call the district nurse out. The catheter was leaking and she was in pain. The nurse managed to sort it out without having to change the catheter and a visit to the GP got her some medication to stop her bladder from having spasms. 

After the second change things were okay for a day or two. Then one night I found Lucy crying in the toilet. The catheter had come out completely and Lucy was desperate to go but couldn't. Her bladder was already full to maximum and she was in pain. It was 1am and I didn't know what to do. Her district nurse had a 24 hour emergency number in her pack which I called. The operator said he would get someone to call me back. Lucy was stressing out because she didn't want to go back into hospital. 

10 minutes after my call there was a knock at the door and it was a district nurse. She'd been seeing someone in the next street when my call had come through so she came straight around. She replaced the catheter and Lucy immediately filled the bag she was so desperate. I can't imagine how painful it must be to want to pee and not be able to. 

We've had no further problems until last night when the catheter bag kept coming un attached during the night. So we changed the bag and are keeping our fingers crossed. 

It looks like the bag is here to stay for now but we don't know why? I'm going to buy her some bag covers for going out to try and help her feel a bit more comfortable about it. 

The nurse is also trying to find out from the hospital what is happening. We have had no results from her urodynamic testing and she should have been for another trial without catheter by now. We don't think that's going to work though, the other night proved that she still can't pee! 



My Girls Enterography or MRE

 On 23rd February Lucy went for her Enterography, or MRE. 

Magnetic resonance enterography is an imaging test that lets your doctor see detailed pictures of your small intestine. It can pinpoint inflammation, bleeding, and other problems. It is also called MR enterography. The test uses a magnetic field to create detailed images of your organs. A computer analyzes the images.

The results came back that she did not have inflammation or any sign of disease. But she did have a very blocked bowel. 

She is now on 6 doses of Movicol a day until we get to see a colorectal surgeon to see where we go next. 

We have done many dis-impactions in the past. Including one in the hospital last September. It doesn't matter how many times we clear her out, she gets constipated again.

We have still not heard back about the cysts on her spine and whether they are having anything to do with her problems. 

We are once again in limbo until we find out what is going on. In the meantime it's tons of pads and disposable pants because it just keeps coming! 




Sorry For Not Updating Sooner but it's been a bit Poo!

 Last week we finally got to see a consultant at the adult hospital to proceed with her treatment. Last year she was told she'd be refer...