Hello everyone,
a little bit about my journey so far if you don’t mind.
all started 10 months ago when I was given a blood test for ca 125 as my I s was getting worse. The results were high and initially this was dealt with swiftly as the go said I could have ovarian issues. I was given an internal and stomach ultra sound and was told everything was ok. I was then sent for a follow up blood test in case it was a blip and this got lost. I was sent for another blood test and the results were still high (about 3 months had gone by now). I was then sent for a ct scan and was told they wanted to investigate further so was sent for a punch biopsy. I was awake during this and the surgeon said he didn’t think it had worked and it turned out he was right as he couldn’t get a good sample. In January 22 I had a laparoscopy biopsy. 2 weeks later after hearing nothing I telephoned and was told over the phone by a nurse that I had cancer. I said was it ovarian and she said no then came out with the phrase ‘ low grade mucinous carcinoma of the peritoneal within the gastro intestine’ .
This meAnt nothing to me and she tried to find out but she said it was really rare and she didn’t have any further information. Nearly 6 weeks on I have had no letters , no telephone from anyone and if it wasn’t for the fact that I made a right pest of myself phoning every day for 10 days that I got further info.
i was told as it was not a gynae issue the team had batted it to colo rectal team at my local hospital. After numerous phone calls to various teams and consultants secretaries I was told by one secretary that my cancer was so rare it had been discussed at a MDT that I will be referred to Basingstoke hospital which is about 2 hours from where I live. I then had to keep chasing again as the consultant needed to formally sign me over to Basingstoke and it took a few more phone calls by me to confirm this has been done.
That was this week. Now I am in no way a medical person and I have still not had any letters or feedback from anyone apart from the nurse so I still not 100% sure it is actually peritoneal cancer or not but I am currently feeling overwhelmed with anger at the slowness of things happening and the fact no one actually tells me what is going on. I have had to tell my family as up to now I was keeping it secret but I only tell them bits and just want somewhere to talk about this as it’s totally all encompassing at the moment. I do not know what any treatment may look like and have been googling things which has really scared me like the cytoplasm reduction surgery which totally sent me into an emotional free fall.
so that’s it. Lol. My story so far. If anyone may possibly have something similar I would really like to hear from you
Thank you
