(*Chapter overview: The final decision on surgery and started the talk about fertility)
Welcome back team, again thanks for reading me ramble on (hoping it's helpful! & I'm getting better at not just rambling on like I'm having a general chit chat.. although we're all friends here right?!). So I've got to the bit which was the two worst parts of it all and the ONE and ONLY (drum roll please) part that made me cry (please note: I cry at the bloody John Lewis christmas adverts and at legally blonde so this is actually surprising I didn't cry more throughout this all) - waiting for the phone call and decision whether I would have my surgery at Basingstoke (and basically know I had pseudomyxoma peritonei) or at my local hospital Addenbrookes (& just have "normal cancer" - which is what I wanted, not exactly two great choices but this was the best one at this moment!). Unfortunately they had to have a few more MDT discussions at Addenbrookes while waiting for Basingstoke to reply back so it took a while, in hindsight it actually didn't take that long but because it was such a horrible thing I was waiting for (basically Basingstoke confirmation would also confirm I would definitely not be able to have children. Ever.) it seemed like it took forever (just to add, I don't mind that it took that long, it just proves how thorough the WHOLE team were in MY care, it is an amazing thought really that they were ALL doing their BEST for my life and my care so this isn't me complaining - quite the opposite dear, don't know why I added dear in there it just sounded right, don't judge).
So I waited one week and then couldn't wait any longer and actually rang my specialist nurse (I hate phone calls and ringing people, I think i'm bothering them so put it off and off so this is also a big deal for me). Anyway, she answered and said unfortunatley they hadn't heard but as soon as she knew anything she would let me know. Poor her, I decided that now I had overcome my fear of phoning her, I just got worse and rang her LOADS (it had been about 1.5 weeks at this point). I think she realised why I was so keen to know and she was amazing (thank you specialist nurses!) and reassured me. She said she thought they would hear back today and explained they were waiting on the outcome of one more MDT result before the final decision as they were still discussing some of my images (awkward one I was clearly).
Throughout all the waiting it was horrible. I kept myself busy, I couldn't exactly go jogging because I was SO HUGE and had perfected my humpty dumpty/pregnant woman look so I took my parents dogs for walks A LOT (at least they appreciated it) and got outside in the fresh air as much as possible including doing my horses (who I think I just gave loads of extra treats to to make myself feel like a better person.. which they loved as they're always on weight watchers). To put it bluntly but honestly, I felt shit. It was horrible. I remember (and me and my mum were discussing this today actually) that I was considering writing a will (what on earth!?) and was deciding who I would leave the horses and gerbils (my babes) to, as well as deciding what I would include in each letter to my family, boyfriend and best friends (how the hell you decide what to write in a letter to someone to read when your dead I don't know but it is difficult - I didn't actually write them, I thought about it and then told myself off for being so stupid and that I'd be fine). The WORST part about it all was that if it was that weird cancer (just going to call it that because I cannot spell it and it's a stupid f*cking name anyway so it doesn't deserve my efforts.. ooh get your claws out girl!) then I wouldn't be able to have children. Now I touched on it in my previous post but I have always wanted children and more so now. I recently became an aunty to my beautiful niece Flo which also made me want children even more (don't worry Chuks, not any time soon babe!). Now if you thought thinking about writing a will along with death letters is mad (I am being real here, this shit happens, it makes your mind think crazy things and looking back it's funny but at the time it felt very reasonable to think like that) I also googled adoption centres. Just briefly at this point but it happened (yup). Oh, and fostering. Google became my absolute best friend on the subject but then I told myself off and didn't let myself look it up again.
The other thought I had (the nursing side of me thought) was ITU. The possibility of having to have a long ITU stay. I don't like ITU, I think every nurse who works in an ITU (Hi guys - some of my best friends do) are god sends because I couldn't do it. They scare me, I don't like all the tubes, the 1:1, the pumps, the wires (I probably could do it if it came down to it and I am sure it is OK once you've experienced it but nope - no thank you). So the fact I could potentially have surgery and wake up in an ITU bed, with all the wires and tubes ATTACHED TO ME was a big - ugh.
Now, the importance of family sticks out here (it always has with my family but especially here). I have cousins and an uncle and aunty up in reading who were already offering my family to stay if I was going to Basingstoke (it is near their house) as well as my older sister Katie (and the best mum to my niece!) preparing to stay at my parents (to let them come and stay with me) to animal sit - including doing the horses. Now you will experience guilt and feel selfish. I didn't like feeling like everyone was running around after me, I didn't like upsetting people with what was happening with me, I didn't like causing my family worry, anxiety or fear of what was going to happen to me. I didn't like them having to put their lives on hold or potentially sacrifice a lot of their year to look after me or look after the animals etc. I don't like attention at the best of times (I am RUBBISH at accepting compliments) so when all the attention is on you, I didn't like it. But, guess what? You have to get over that and realise it is not selfish and it is not your fault. I didn't ask for Olga or to be poorly but it happened and it is only natural that the people that love you will do anything they could to help. I tried to change the subject a lot of the time to "but how are you?" or anything not Olga because, the honest truth is, I thought I was boring people to death with "everything Olga" (I now know I wasn't) but it felt like I was and I hated that part the most. I didn't want people to feel less important than me (Katie & Rosie- I'm still the favourite daughter though) but I don't think they ever did.
Anyway, fast forward to the day I got the phone call from my specialist nurse. I was driving Barney (my car.. yep, named my car, then my tumour.. what next ffs!? Oh yeah.. my good ovary is called Olive. You're welcome) to my parents and the phone rang, I knew the hospitals switchboard number my heart at this point (yep, that's sad isn't it) so I knew who it was. I didn't want to answer while driving as I needed to concentrate so I did this crazy manouvere (luckily no one was behind me or, on the road at all for that matter) because I basically just (without warning or indicating.. and I HATE PEOPLE THAT DON'T INDICATE) swerved off the road into someones drive and then shoved my hazards on (standard). So, you learn to judge whether an outcome is good or bad from the way people speak or act (so tone of voice on a phone call) and my specialist nurse sounded really positive so I thought, doesn't really sound like the voice of someone that's about to give crap news that she would know would upset me (psychic vibes - if that's how you spell the word). She didn't keep me waiting either she just said "See you at Addenbrookes" and then explained that they'd looked at my images in various MDT meetings and had been back and fourth between the surgeons there and at Addenbrookes and the specialist centre was happy for me to go ahead and have surgery at Addenbrookes. I think I nearly screamed down the phone (and I'm pretty sure a little bit of excited wee came out - we've all been there so don't act like you haven't guys). I remember saying "So that means its not the pseudo thing then doesn't it?" and she said "I can't really confirm it (it needed to be my surgeon) but Addenbrookes doesn't take cases of it" which basically meant no it's not it without saying those exact words (nurses speciality). She was really happy as well and explained that I would have to come into clinic the next day to discuss surgery options and that I would also have to go to pre-op clinic. By this point I really didn't care what happened. I was just excited to tell everyone!
So my surgeon managed to fit me in at a clinic appointment first thing that following morning (0830) before clinic actually started (do you have any idea how important I felt!?). My very straight to the point (best way to be) surgeon sat me down with my specialist nurse and explained what my surgery would or/and could involve. Now it is important to say that when he first met me in the very initial stages I was getting full very quickly and was unable to tolerate eating that much (which was a worrying sign to him because of course Olga could potentially have been squishing my organs and my stomach). He came back to this point and was glad when I said that that feeling had passed and I was able to eat a lot better (Olga had obviously moved her position - fake baby, potentially done a bit of kicking and wriggling around!?). He had the images of my scan up and oh my god guys, I wish I took a photo. I do not understand scans AT ALL and either does my mum and we both just looked at the screen, looked at each other and then at him. ALL you could see in my whole abdominal space was OLGA. NOTHING else, no organs, just this big white area of pure OLGA (URGH - she gets me so angry!). It was so obvious something was abnormal that I'm pretty sure if any of his medical students were questioned on it and didn't think anything was wrong they'd be kicked off the whole course and their career ended then (honestly, even my niece would think it was a bit weird!). He then apologised to me and said that the next available potential slot for my surgery would be in 2 weeks time and that was the quickest he could offer me. I honestly didn't mind but he obviously knew I was getting a lot of pain and was uncomfortable with Olga (and the fake pregnancy was a bit boring now and you don't get many benefits of it so..) and he also wanted it out as quick as possible so he was sorry. He explained that my surgery could be anything from 2 hours to 10 hours and the reason he had to wait 2 weeks before a slot was because 1) there wasn't a theatre slot that long available until then but also, he had to make sure the other specialist surgeons were available on call in case he needed them. For example, if I needed a stoma, the colorectal surgeon needed to be on call and available for my surgery on that date as well as various other surgical people (it is at moments like this you realise just how good our health care is and these people aren't paid enough and cannot be thanked enough for their work). He then explained everything that could potentially be done (and this was hard).
Potential hysterectomy
Potential both ovary removal - if not, then just the left effected one
Potential both fallopian tube
Potential stoma (hopefully reversible and temporary) but also potentially a permanent one
Potential bowel or surrounding organ intervention
Appendicetomy
Ommentectomy
Debulking further with pelvic peritoneal resection All of the above would be done via laparotomy (an up down incision straight down your abs, cutting them in half basically). Along with the fact that if it was a 10 hour surgery and all the above were done, an intensive theatre recovery bed alongside a couple of nights in ITU would be required. (Ugh - ITU).
It was at this moment I thought, shit. This is serious, I am actually poorly (bit slow really aren't I.. bit late to the party hahah).
*Coming soon: The FINAL decision, pre-op clinic and chats about my fertility including the dreaded IVF talk.*
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