Thursday 18th September
Ninth week after last chemo and I am starting to feel as if I am getting back to normal. After not posting for ages I think my brain has gone into overdrive and I need to put loads of stuff on here! I forgot to mention that I requested a copy of all my medical notes [or did I? oh well].
This is a bit of a palaver, as they don’t just let you read them, you have to get permission from your doctor, then pay a tenner for the photocopying. I was a bit incensed by this at first, as they are, after all, MY notes. But upon a little thought [and especially since reading them] I now understand why. Usually you have to read them in the presence of your doctor; this is so that anything that distresses you can be explained properly. I also wonder if it’s due to the fact that doctors seem to have the most abominable handwriting in the world! For such a brainy bunch, you’d think they’d be able to write clearly? Apparently not.
Anyway, got permission from Dr Hong [I think she is used to me by now and knows that I need to know everything] and filled in a few forms, and they arrived in the post while I was in Portugal. Having quickly learned to read what appears to be a mad persons scribble, I ploughed through the notes. The Jones Rosetta Stone!
In January I had about 4 pages in my file - now I have a file about an inch thick! Incredible. At first I didn’t want to read them, and they sat on the desk for a few days until I got into the right frame of mind. You never know what you might discover by being curious. You know what they say about the cat... Finally read through them, and I am absolutely amazed at how many people are involved in this type of thing. It’s a miracle how they all coordinate with one another. I also now understand why it takes them 3 weeks to get organised to do surgery. AND I know a lot more about my operation and the cancer than I did. This is a good thing as far as I am concerned, but I certainly wouldn’t recommend it to everyone.
There are pictures in there from the initial sound scan. Quite odd to be looking at my own insides. And I didn’t realise this all kicked off as far as the hospital etc was concerned, on 30th of January. The time has flown by this year. At that point my CA 125 was 566. By the time I’d had the CT scan and all the other commotions, it had risen to 1149 by the 29th of Feb. That’s fast, and it seems to have been of concern to everyone that the tumour was growing so quickly too. At the time everyone seemed so chilled out.
It cracked me up to read that this was "elective" surgery. What? As if anyone in their right mind would choose NOT to have a huge malignant thing removed from their body? I suppose it’s possible, but NOT on Planet Sandhy that’s for sure. Then came the Total Abdominal Hysterectomy and Bilateral Salpingo-oophorectomy, with the Infracolic Omentectomy...good heavens, how do doctors have a quick chat at tea break? All these humungous words. Enough to make you choke on your ginger biscuit.
3rd of March was the surgery - it seems that after they chop you open [the polite term appears to be: Lower Midline Routine Entry – 'routine' for them maybe!] they wash out your pelvic cavity at the start of surgery. They send that fluid for cytological examination [they check out the cells]. I had images of the Fairy advert – "Use Fairy, for soft hands and a nice clean pelvic cavity". The immediate post surgical 'impression' was that I had Stage II Ovarian cancer, but that obviously changed once they’d done the biopsy, as a few pages later, I was a Stage IIIb. Renninson removed everything, but I didn’t realise that the other ovary was also abnormal, and there were tumours elsewhere as well. For my peace of mind I am glad to see that everything was removed. Good riddance to that then!
3rd of March they did the histology report on all the bits that had been sent over. What a job - yuck. Imagine dissecting someone else’s innards? The words 'sliced' and 'dissected' don’t exactly leave a lot to the imagination either, reminds me of biology classes....all this washing, slicing and dicing...shriek! So, I have a few questions for Dr Hong on the 7th October, but nothing very urgent. Good for me that we have the never ending info on the internet. One site actually explains HOW to do this kind of stuff - just in case you forgot to go to medical school?
So, ask for your notes ONLY if you’re quite sure your stomach can stand it! Ah, the adventures of The Ordinary Woman...just think! If this hadn’t happened I would NEVER have known where the Pouch of Douglas is!! [well, WAS now]. Wow...what a loss that would have been...
Ninth week after last chemo and I am starting to feel as if I am getting back to normal. After not posting for ages I think my brain has gone into overdrive and I need to put loads of stuff on here! I forgot to mention that I requested a copy of all my medical notes [or did I? oh well].
This is a bit of a palaver, as they don’t just let you read them, you have to get permission from your doctor, then pay a tenner for the photocopying. I was a bit incensed by this at first, as they are, after all, MY notes. But upon a little thought [and especially since reading them] I now understand why. Usually you have to read them in the presence of your doctor; this is so that anything that distresses you can be explained properly. I also wonder if it’s due to the fact that doctors seem to have the most abominable handwriting in the world! For such a brainy bunch, you’d think they’d be able to write clearly? Apparently not.
Anyway, got permission from Dr Hong [I think she is used to me by now and knows that I need to know everything] and filled in a few forms, and they arrived in the post while I was in Portugal. Having quickly learned to read what appears to be a mad persons scribble, I ploughed through the notes. The Jones Rosetta Stone!
In January I had about 4 pages in my file - now I have a file about an inch thick! Incredible. At first I didn’t want to read them, and they sat on the desk for a few days until I got into the right frame of mind. You never know what you might discover by being curious. You know what they say about the cat... Finally read through them, and I am absolutely amazed at how many people are involved in this type of thing. It’s a miracle how they all coordinate with one another. I also now understand why it takes them 3 weeks to get organised to do surgery. AND I know a lot more about my operation and the cancer than I did. This is a good thing as far as I am concerned, but I certainly wouldn’t recommend it to everyone.
There are pictures in there from the initial sound scan. Quite odd to be looking at my own insides. And I didn’t realise this all kicked off as far as the hospital etc was concerned, on 30th of January. The time has flown by this year. At that point my CA 125 was 566. By the time I’d had the CT scan and all the other commotions, it had risen to 1149 by the 29th of Feb. That’s fast, and it seems to have been of concern to everyone that the tumour was growing so quickly too. At the time everyone seemed so chilled out.
It cracked me up to read that this was "elective" surgery. What? As if anyone in their right mind would choose NOT to have a huge malignant thing removed from their body? I suppose it’s possible, but NOT on Planet Sandhy that’s for sure. Then came the Total Abdominal Hysterectomy and Bilateral Salpingo-oophorectomy, with the Infracolic Omentectomy...good heavens, how do doctors have a quick chat at tea break? All these humungous words. Enough to make you choke on your ginger biscuit.
3rd of March was the surgery - it seems that after they chop you open [the polite term appears to be: Lower Midline Routine Entry – 'routine' for them maybe!] they wash out your pelvic cavity at the start of surgery. They send that fluid for cytological examination [they check out the cells]. I had images of the Fairy advert – "Use Fairy, for soft hands and a nice clean pelvic cavity". The immediate post surgical 'impression' was that I had Stage II Ovarian cancer, but that obviously changed once they’d done the biopsy, as a few pages later, I was a Stage IIIb. Renninson removed everything, but I didn’t realise that the other ovary was also abnormal, and there were tumours elsewhere as well. For my peace of mind I am glad to see that everything was removed. Good riddance to that then!
3rd of March they did the histology report on all the bits that had been sent over. What a job - yuck. Imagine dissecting someone else’s innards? The words 'sliced' and 'dissected' don’t exactly leave a lot to the imagination either, reminds me of biology classes....all this washing, slicing and dicing...shriek! So, I have a few questions for Dr Hong on the 7th October, but nothing very urgent. Good for me that we have the never ending info on the internet. One site actually explains HOW to do this kind of stuff - just in case you forgot to go to medical school?
So, ask for your notes ONLY if you’re quite sure your stomach can stand it! Ah, the adventures of The Ordinary Woman...just think! If this hadn’t happened I would NEVER have known where the Pouch of Douglas is!! [well, WAS now]. Wow...what a loss that would have been...
You took me down a scary but memorable walk down a path I took a few years ago after battling Ovarian Cancer. Thank you for the blog, I was googling and came across your blog. It encourages all those woman who need to do the same thing; read what's said about them! Its important if you're brave enough to try it, cause like you I learned a lot from reading my own file. God bless
ReplyDeletethank you! the best thing is to hear from women like you who are survivors! so encouraging!
ReplyDeleteI have become 'blog' mad :o] - so good to be in touch with other women who have or had the same thing. Any ideas / tips of yours are very welcome
Sx
Sandhy.. Thanks for sending me the link to this part of your blog... Wow now i'm definatly excited at getting my notes sent to me..
ReplyDeleteThanks mate xx