After months of feeling generally unwell and relating that to another condition I have, and then experiencing some psychosis, I was sent for an MRI scan of my whole brain just to check everything was ok. This scan came days after booking our wedding venue and showed a 2.5cm tumour in my cerebellum. 6 months prior to this scan, I had an MRI of my pituitary which apparently missed the part of my brain with the tumour by a mere slice of the image!
I was called onto the ward that ordered the scan and told about the tumour by a doctor that seemed very nervous and upset by the news. Within 15 minutes of this news, I was whisked up to Neurosurgery in a wheelchair (they insisted, even though I felt fine!) and was admitted onto the ward. I remember this as a bit of a whirlwind and suddenly found myself surrounded by what felt like 8 surgeons and juniors (I'm sure it must have been less than that). After further scans of my brain, spine and then whole body, I was allowed home on pass, to return in a few days for surgery to remove the tumour.
I remember that I was not in the slightest bit perturbed that this man was about to cut my head open and slice into my brain, but rather the final straw was the fact that I would have a urinary catheter inserted for during and after the surgery! The surgeon managed to get every visible part of the tumour out and I spent about 10 days in hospital after my surgery and returned home to await the pathology of the tumour.
On the same day that I bought my wedding dress, the tumour cytology came back and I was told that I had a (grade 4) medulloblastoma and would required further treatment.
I went on to have begin craniospinal radiotherapy treatment but this was discontinued due to my sickness being so bad. I then attempted it again around 6 months later but again, I did not continue this. The treatment involves me lying face down with a mesh plastic mask over the back of my head, I couldn't move, or see, and setting up and receiving the treatment took 30-40mins - I'm very claustrophobic and it just got to the point where I could not cope with it any more.
As a result of not having the required treatment, I've been told my tumour will definitely return and now have scans every 4 months.
During all this, I don't recall feeling scared or upset but now that I am feeling better, I am experiencing a lot of the emotions - such as grief - that I didn't experience at the time. This can be quite challenging since it's a bit disjointed.
No one can give me a prognosis, as I presume there isn't any recorded data about the prognosis of patients who haven't had the prescribed treatment. Despite this, I am trying to crack on with things, at uni, working a little and volunteering.
Recently, I had picked up a little but a few weeks ago, I had a seizure and seem to have taken quite a few steps back. It's frustrating seeing my peers graduating and having families, but I'm trying to adapt and make the days count. This was my first ever seizure and came totally out of the blue. Annoyingly, it's put my driving license application even further away but that's not really the end of the world!
Recently, I had picked up a little but a few weeks ago, I had a seizure and seem to have taken quite a few steps back. It's frustrating seeing my peers graduating and having families, but I'm trying to adapt and make the days count. This was my first ever seizure and came totally out of the blue. Annoyingly, it's put my driving license application even further away but that's not really the end of the world!
No comments:
Post a Comment