Am I dying at age 23? Can I have children? - Hearing the first potential diagnosis and first meeting with my surgeon.
Hey guys, just want to say thanks for reading. If you know anyone going through cancer, especially ovarian or someone that’s young and struggling then send them this way. I am a bit shit at replying to messages in general but when its about anything cancer then I do reply quickly (my friends know I do this thing called “mentally reply” which is where I reply in my head and never actually physically reply – oops).
So, I’ve got the “pink folder out” (it's in the photo above, oh my god don’t I look like SUCH a crazy cat lady/professor Umbridge off Harry Potter, if you don’t know who that is then you’re not welcome here and leave now – joking, but seriously.. watch it, I’ve never hated someone so much in my life, literally more than Olga). The folder has literally ALL my clinic appointment letters, test results and scan results in (colonoscopy results included – urgh). It is like the bible to Olga diagnosis, surgery and treatment. I didn’t want to write this next bit without it so apologies it has taken me so long (I’ve also graduated, YAAS, so I was kind of busy with that amongst other things, including clinic – joy).
After I had the MRI scan done (my very fashionable MRI scan should I say) I got referred to my surgeon, I was very spoilt and got the most senior and the lead gynae oncological surgeon along with some of the nicest specialist nurses ever (they all know who they are, I sent them a “you made a difference” award). I went in with my mum, dad and boyfriend. Mr L (don’t want to put people’s full names in just in case they don’t want to be in some random blog! So there we go, he will be called Mr. L - could be worse to be honest, could be the GCSE name “John Smith”). Anyway, he was “my cup of tea”, he was very honest and straight to the point and not patronizing at all. He just said it how it was regardless of how shit it actually was but I am that sort of person, I don’t want to dodge the bullet, I want to know everything. Anyone that has been ill or had loved ones that are ill, the worst part is the not knowing. Once you know what it is, no matter how shit (and it was shit) it is, you can mentally plan and prepare for it rather than over thinking and guessing what it could be if you don’t know what it is (stay away from google people, it said I had all sorts of weird and wonderful things - but actually it was kind of correct this time – well done doctor google – but still, stay away). I will write out what was said from Mr. L, to myself and forwarded on in a letter to my GP so you get the “medical” side of it, then I’ll ramble away at how that made me feel and what I thought to that and write it more “normal person” vs “medical person” (I mean I am somewhat medical but some of these surgical words throw me).
By the way this is long winded and I have put * next to the words that I’ll explain in normal people terms below (sorry if any people reading this do understand – you’re normal too, just very clever normal):
“We have reviewed her images at our MDT and these show a very mucinous* tumour arising from the left ovary with peritoneal disease* and ascites*. MRI scan has shown a normal-looking appendix. // This is an unusual presentation of a mucinous tumour and there is a chance this is part of the pseudomyxoma peritonei spectrum*. // I am therefore arranging for her images and clinical scenario to be reviewed by the team at Basingstoke in case they feel they should be offering her primary surgery. If not then we will arrange a primary operation for her in Cambridge, which is likely to consist of left salpingo-oophorectomy*, omentectomy*, appendectomy*, and resection of any involved peritoneum.// (Que the SHIT part) I have warned Miss McGonigal that if she does have an ovarian cancer we will need to consider hysterectomy and removal of her other tube and ovary as well. She is aware of the very obvious fertility implications of this and I have asked for help from Dr.P in reproductive medicine.
(* Mucinous = they have cells in them with the presence of mucin, basically a thick snot like substance – gross I know – that was inside me!!
* Peritoneal disease = a thin layer of tissue which lines your abdomen and is basically your bladder, uterus and rectums armor. He was worried this had also been effected by the cancer as he could see evidence of this on the MRI scan
* Ascites = abnormal build up of fluid in the abdomen (basically why I looked 6 months pregnant – yay)
* Salpingo-oophorectomy (what a mouthful and stupid name) = the removal of the ovaries and tubes (yeah its pretty shit so far isn’t it?)
* Omentectomy = basically a ball of fat that hangs off the stomach, large intensines and other organs in your abdomen (who needs fat anyway?!)
* Appendectomy = removal of your appendix which does f*ck all anyway (so that bits ok – really selling the “I’m medical” bit here aren’t I?)
Last but not least “Pseudomyxoma peritonei = It’s actually known as “Jelly belly” ffs, I had to try not to laugh at that bit, still makes me laugh. It is basically a shit cancer which is very rare and is treated at the specialist center which is in Basingstoke (it is also treated at The Christy in Manchester). It is a rare form a cancer that usually starts in the appendix but can also start in the bowel, bladder or ovary. It effects your whole abdominal cavity – so A LOT of organs – and it produces a mucous like substance which collects like jelly in your belly. Without treatment it will press on your bowel and other organs which is obviously really dangerous. The treatment is rubbish, a huge operation which includes being opened up and having chemotherapy swished around you like a bloody siv while you lay knocked out on the operation table for a few hours)
Back to me now and my rubbish English compared to that. That’s a bit of a mouthful right? I remember my mum trying to take notes but with words like that its pretty hard to write those down, like, how do you even spell them yet alone say them and what even are they? (I can’t even spell them still; I’ve just had to copy out my Olga file). Mr. L knew I was a student nurse (which did help in some ways and I don’t know if that is why he was very much to the point or that is his way with everyone... but I liked it) but to be honest, as a student nurse you get taught nothing about the reproductive system or cancer (well I didn’t at my uni) so it didn’t really help at this point (and you can’t really wing it when its about your own health – oh god that’s just made me sound awful, you know what I mean I hope). So, to be completely honest nothing stuck in my mind apart from these top (its like their in a completion, ffs) things: 1) Hysterectomy and ovary removals: Could I have children? What the hell was happening, this is literally being taken away from me in a split second (it hadn’t even been confirmed but you just over think it, please never tell someone “everything will be Ok” by the way – my family didn’t and were so good about everything - because how do you actually know that?). I have always wanted kids, I have always wanted a boy and a girl (I don’t mind now but when I was younger I had this mad plan that I’d have 1 boy and 1 girl and the boy would be older to protect the girl like the older brother – cute and very thorough wasn’t I?) but regardless, it has always been a huge part of my life to have children. It is the most horrible thought and the only part of the whole Olga thing that made me ugly cry where you can’t breathe properly (I miraculously didn’t cry in the room at that moment in time but that’s almost even worse, I was in such a daze and shock that I hadn’t really got any emotion. I am also the type of person that hates showing emotion so I just put on a big act – basically I should be an Oscar award winning actress right now with my big break being focused on “pretending to be ok when your not”. I reckon people could take tips off me right? #New career). I knew how serious it was then, Mr. L very casually (but with complete sympathy) said “Oh, if it is cancer it’ll be stage 3 or 4”.
2) “Stage 3 or 4”: Now I know I said I didn’t get taught much about cancer in my course but I did do a cancer research placement and people (from all backgrounds/jobs/no medical knowledge) usually understand what that means – incurable. I thought I was going to die. I went absolutely crazy when I got home. When he told me I literally got a lump in my throat, swallowed (you know when toddlers do that really annoying swallowing noise on purpose – it was like that) and just went “Okay” (literally as calm as anything, really weird – I WAS NOT CALM). I remember after the appointment I thought I was going to die at 23 but kept going back and fourth between “oh shit I’m dying” to “Nah, Addenbrookes is such a good hospital they’ll fix me”. I went for a walk through this field and (you can laugh because this is a bit extreme and it does genuinely make me laugh now) and looked up at the sky and round at the trees (sounds like I am writing a romantic novel right now, what the hell?) and thought, I’m not even going to get to see these or the outside anymore. I don’t care if it rains right now, I won’t be able to feel rain again for much longer (hahah, what on earth?! I thought this was perfectly normal at the time but I find it funny now). It was the most horrible feeling and unfortunately it has stuck with me through my career, if any patient gets told they are dying, may die or have incurable cancer then I very nearly every time burst into tears (I cry inside my head at work and never show it but I really struggle for those few minutes after) because I’ve somewhat experienced just a small % of what they must be experiencing and it is THE WORST thing I’ve ever experienced so the fact it has been confirmed for them is heart breaking. Now on top of the potential stage 3 or 4 was this stupid potential cancer with an even more stupid (play ground insults on cancer, that’s how I roll) “Pseudomyxoma peritonei” (I mean who even named that?).
3) Psuedomyxoma peritonei (nope – still can’t spell it). Mr. L said “you won’t know what that is, even my medical students or other oncologists don’t” (well if they don’t, he’s right – I don’t have a clue, I just mentally laughed at the fact its referred to as Jelly Belly). He did explain briefly about it but also wrote the name down for us (AND HE CAN SPELL IT, JUST LIKE THAT – THIS IS WHY HES THE TOP GUY! Nothing to do with the fact he literally saves lives or anything..) with strict instructions to ONLY research and read up about it off the Basingstoke (the specialist hospital that deals with it) Hospital website. At the time I honestly didn’t think it was that bad, it just sounded like some other form of cancer and that it would be removed, have a bit of chemo and it would go. I wasn’t even that bothered about googling it and because he was concerned but not in the way I would expect considering what it was (not sure what I expected but I basically didn’t feel at the time it was that bad so it was almost insignificant). Anyway, my mum had been on google over the next few days after the consultation and once she had had a google, I did. Now, to explain how bad it was I will take a snippet of what the Basingstoke website say about this beautiful (sarcasm) little disease because this is what I read and it made me feel physically sick.
So the first part = “If untreated, it will result in compression of the abdominal organs, making normal nutrition no longer possible (so no more eating and I’d be squashed by the mucous fluid basically). The complications of malnutrition (predominantly infection such as pneumonia), and complications following surgical treatment of the disease are common (common.. great, that’s not what you want).” Followed by the surgery = “The common surgical approach is debulking to remove as much of the tumour as possible, and generally includes removal of the uterus and ovaries in the female and often the total colon and the omentum in men and women, leaving them with a permanent bag (stoma). Disease recurrence is almost inevitable due to residual disease around the peritoneal cavity. Repeat debulking surgery may be possible, but each attempt becomes more difficult and dangerous. The small bowel becomes increasingly involved due to disease and adhesions following prior surgery and eventually surgery is impossible and is fraught with severe complications such as small bowel fistulae”. Now Mr.L did warn me about the potential of having to have a stoma (that is one of the only things that I think my face dropped at in front of him) but he thought it would be able to be a reversible one. I can’t even express how I felt when I thought that, I felt sick. I mean, how do you feel reading it? It is pretty shit isn’t it.
I basically have to now wait for the results of the MDT and what Basingstoke think. If they think it is that disease, I will go to them for surgery (2 hours away from my house and family) but it isn’t just that. It would be a long ITU stay, a MASSIVE surgery and the potential it would only come back and I would maybe die anyway (brutally honest).
*Coming soon: Basingstoke vs Addenbrookes. Receiving the phone call of where surgery would be and come along to surgery with me*
*The awkward moment this has taken you over an hour to write and you think you've written a dissertation length bit of work, then scroll up to find it is actually really short. Sorry guys, I will make my next one longer - well, it has to be because it is very information overload! (Follow my IG and share. Any questions - message me on IG).