Hey guys, I actually find my laptop charger so instead of looking into savings accounts I've decided to come back and do what I love the most (taking the piss, no.. writing! ;-).) (Please scroll down to the sub-header "IVF" if that is the main reason you've come and you don't want to read me rambling on at the beginning!) I read back on my last post about surgery and forgot to mention a big part, I was listening to the you me and the big C podcast and it reminded me. The major de-bulking surgery at Basingstoke also included being kept open on the table while heated up chemotherapy was kept inside me for a good hour to try and kill all the cancer cells (yep - just to add to it but we know, it wasn't that cancer in the end - yay - but it was still cancer - shit - and I still needed a big surgery - oh bollocks).
So where were we? Oh yeah, what is my final decision on surgery going to be? Was it going to be 2 hours or 10 hours? When would it be? What time? What would happen? Children? IVF? (Basically, just lots of unanswered questions which some, were still unable to be fully answered and I will explain why below)
I got called back into clinic and it was to explain about pre-op, how it works, what would happen with the surgery and how I would consent etc (I did a surgical placement in my first year of nursing which basically involved me doing every single pre-op checklist there was so I could hear the questions I would be asked in my head already, might as well have just done my own!). The actual chat about surgery and what my surgeon might potentially have to do wasn't that much different to what I had written to previously (and I don't expect you to remember all of that so I've done a cheeky copy and paste and written it below.. "and here's one I made earlier", classic art attack kids TV programme back in the day, loved it) Potential surgery: 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
but I did know that I had a date of April 21st which was about 2.5 weeks after that clinic appointment because they had to make sure all the other speciality surgeons were at the ready on the bleep to be prepared to come in and sort my insides out (gross). The main thing this post is about is IVF because I got asked the question: "Would you like me to refer you to an IVF specialist?" - I can't explain what I felt like when those words were asked. I had already gone mad (actually mad) at looking up about adoption, researching about fertility statistics after cancer and researching how effective IVF actually is so I am not sure why it came as such a shock. But it did, and I think it was because someone else had already said it (not just me and my mad over thinking head), and not just anybody - a professional, a surgeon, an oncologist, someone who knew what they were saying.
It was now real, complete reality that I might not be able to have children and that me (a fit, healthy and very active 23 year old) was actually being asked about IVF. It is one of those things you hear about, IVF, and you never think it'll have to happen to you ("oh it won't be me") but you feel so sorry towards any couple that has to go through that struggle and you sympathise (as much as you can) about how hard that must be.
When you're growing up you always just think it is straightforward, that you'll just "have kids" (if you want them that is) and that that's that.. you just pop them out (obviously that's not how it works but I'm talking about when you're a child - not making it sound easy to all the mums out there!) and you never think about what happens if there is a problem or something goes wrong which prevents, restricts or even completely stops that from being able to happen naturally.
My mind was half numb, half going 100mph. I had so many questions flagging up that only I could answer, not my family, not my surgeon, just me. Questions that I had to answer correctly or I might not get the chance again (literally). Questions like, "do I definitely want children?", "Would my relationship break down if I couldn't have children?" (I knew Chuks wanted kids at some point so what would happen if I couldn't give him that?), "Should I even have the surgery if this is what's stopping it?", "Can I afford IVF?", "What even is it?". I know this blog is meant to be highlighting how I felt and sharing my experience but I can't really go back to how I really felt, probably because my mind has blocked it out and won't let me fully go back there. What I will say is that whenever anything IVF is mentioned, whenever I am asked "have you got children?" / "are you planning on having children" or I watch/hear anything to do with infertility, I want to or I do (depending on whether i'm in a public place or on my own) cry. It STILL affects me.
One thing I did know 100% was that I wanted children, no matter what, one way or another (this stubborn bitch) was going to have them. So I knew the answer to my surgeons question regarding IVF was a yes. He was brilliant, he was very honest that it wasn't his area of expertise and for that reason he wasn't going to explain anything related to IVF with me but he did speed up the appointment I got with the IVF specialist consultant and referred me very quickly. He told me that if I did choose to go down the IVF/egg freezing route then it would prolong my surgery by quite a few weeks or even months but that he would obviously respect whatever decision I chose. At the end of that clinic appointment I had to go my pre-op clinic appointment (good timing but can't be helped) and then I just waited for my IVF appointment to come through. (*Pre-op (in brief as there's really not that much to it that I can share that will be helpful as it's straight forward). So, pre-op clinic is what it says on the tin - it is a clinic you go to where a nurse asks you lots of questions, do a set of vital signs (blood pressure, temperature, respiratory rate, heart rate), height and weight and an ECG (a heart trace which takes about 2 minutes, doesn't hurt and shows the rate/rhythm of your heart from all different angles and gives them a baseline reading). The questions are related to any allergies you have, if you've had a reaction to anesthetic before or have you ever had surgery before. If you have any implants (so hip replacements, pacemakers - definitely something I had a lot of - I actually made that joke on the day and the nurse looked awkward, probably thought I was a right weirdo), any dentures (again - obviously), caps or crowns (yes - I'm a queen, Ok, I stopped joking here) and.. I've actually forgotten the other questions (which I can't believe as I normally, sadly, know these off by heart) but, there is nothing particularly interesting and it isn't a scary procedure. It takes about 30 minutes for everything. Oh the thing they did give me there and then was my pre-op drinks (lush) that I would have to drink before my surgery as I would have to be nil by mouth (nothing to eat or drink - yes I know it is obvious but I didn't know what that meant when I first read it so..) the night before and the morning of my op (and I eat every 2 hours roughly so I would struggle) but also because of how major the operation would be on my body, the drinks are full of nutrients, protein and calories to help my body out in the recovery phase! The drinks are literally called "pre-op" and I got 4 of them (generous aren't they?), I guess it varies depending on your weight and also the type of surgery you are going to have. I had never seen them before but it might be because I've only ever worked with inpatients and also, the surgeries I worked with were orthopedic so people weren't unwell before hand (in the majority of cases) and usually the recovery is fairly straightforward (please correct me if I'm wrong!) OR, it might be because I didn't pay that much attention (probably most likely this isn't it..).
Everything IVF
So once my pre-op clinic assessment was done (and I'm pretty sure I never had an ECG done but YOLO.. my heart was fine) and I was off on my way home with my little present of my lovely pre-op drinks (and I was thinking how shit they were going to taste - they don't taste that bad by the way, actually quite nice). All I did and all I focused on was waiting for my appointment with the IVF specialist. My family were all so supportive, I cannot thank them enough (and I know I don't, which is partly why I am writing this, I'm not very good at saying emotional things out loud because I will just cry and I don't like crying in front of people). IVF is expensive, you're talking thousands (oh and I've just remembered I've got a scratch card in my purse.. you could be reading a millionaires blog shortly - easily distracted I know) and it doesn't really make sense because it is no ones fault they cannot conceive naturally so why does it cost so much!?. Now, mine was offered for free but only (and I say only not to be ungrateful but for education purposes) for egg extraction which is when you are given hormone medication for 8-14 days to stimulate the ovaries to produce multiple eggs which are then extracted and frozen in an attempt to thaw them at a later date when you want to have children (they stimulate your ovaries so you produce multiple eggs - more eggs, more potential I guess!). The reason I am saying "only" is because it is the least effective method of IVF but it was free and (very kindly) being offered to me!. It is important to say that it HAS and DOES work (and I am still so grateful for it to this day because I understand there would have been a time where this was never an option in the first place for some people). If I would have wanted to freeze an embryo (which is potentially more successful - this is what the consultant told me, this isn't just from my head - and which is where a pre-fertilised egg is frozen rather than just freezing an egg on its own) then it would have cost me A LOT of money - thousands (I never asked the exact figure so sorry I cannot tell you a rough estimate) and it was money I didn't have (I went mad again and was contemplating whether to take a bank loan out).
Now when I say my family were supportive, to put it into perspective they offered me their life savings to help me pay for it. How can you even thank someone whos willing to do that for you? I cannot thank them enough and will never forget that offer. The most selfless gift ever. (I'll check with them after if they mind me saying who it was as it's someone's finances so I don't want to mention who!). I also got offered someone to be a surrogate mother (being serious) if I ever needed it.
Now, to put it into perspective how upset it did, and still does, make me. I remember saying to my oldest older sister (is there a proper word for that?)
"I would rather have stage 4 cancer then not be able to have children".
When I remember that moment, it gives me the shivers because it was such a dark moment, the worst moment of cancer for me. The only part that made me cry, the only part that still makes me cry and definitely the most horrendous (love that word) time. Because the reality of that sentence is saying I would rather potentially be incurable and die (and most likely not live to have children anyway) and it just doesn't make sense but it shows how messed up my brain was but it shows how much having children means to me.
I got my appointment date through the next day and it was for 3 days time (very quick). I got offered by my sisters and my mum for company on that day but my boyfriend took a day off and came with me. I had no idea what to expect. It was about 15 minutes away from my house and I can't even remember the journey there (my mind has clearly blocked that part as well or I was so emotionally numb). I remember getting there and walking into reception and seeing another couple in there and instantly feeling sorry for them but also not feeling alone and almost feeling oh, ok, it isn't just us going through this either. I remember telling my boyfriend everything medical that I knew and just going "then they'll take my obs and our height and weight" and obviously trying to distract myself in anyway I could. As predicted, they took my weight and height as well as my boyfriends (they need his as they need to know that your partner is healthy as well as they're clearly very involved in the process as well). After that was done it was the wait. Just me and chuks (and absolutely fuck all) to distract us. That wait felt like forever. Half of me wanted to just leave out of pure fear that once she started speaking it would again, make it real, but the other half of me told me that even if I did leave I would only regret it and leaving wouldn't make it all go away and suddenly make it all better would it? Anyway, we got called in.
She ran through the process of egg extraction - unfortunately I can't remember much because I was trying so hard not to cry that I distracted myself in anyway possible (I looked at her fxcking car keys for goodness sake and went in my head, oh she drives a BMW like Chuks.. nice.. yep, not normal thinking!!) but I will tell you what I remember. She said I would have to have 2 weeks of hormone therapy beforehand (so in my head I immediately said that that was a further 2 week delay for surgery and getting Olga out) and then if I did choose to have my eggs extracted then it would be done in London at Thomas and St.Guys (hello 24 hours in A&E). She explained the procedure itself and explained how it is a very fine needle that is inserted through your vagina (yes I cringed and crossed my legs so tightly.. and I just did that when I wrote it out) and directly into your ovaries (in my case my ovary, the one that hadn't been engulfed by bloody Olga) and then they draw the eggs out. The eggs are then frozen and can be kept for around 10 years (but can be longer). I had no idea that was how it was done and I was then stuck as I was terrified of that procedure but knew I couldn't say no to my potential only way of having children because of that and that I would have to get over it basically. She then told me that people without cancer (now I'll make it clear that she kept mentioning the word cancer and I had NOT had a diagnosis then so that also messed with my head.. and I unfortunately left the appointment thinking I had cancer and that she knew and they just hadn't told me yet which wasn't the case) and that are perfectly healthy but are career driven ladies that simply want to come back to having children at a later life often freeze their eggs when they're young so they're able to re-use those eggs when they're 40+ years as the eggs will still be as young as when they're extracted.
After she had explained the process (and I can only apologise I can't really remember more than that) she then asked me the question: "So what would you like me to do? Would you like to go through with it?".
I had NO idea that I was going to be asked for an answer there and then. She then left the room for about 10 minutes so we could decide.
My head was a mess. But of course me being me held my tears back and acted as well as I could have, I probably even took the piss at some point to Chuks. I honestly don't know how I didn't cry, I felt completely broken.
I think the reason I felt so low was because I knew in my head that I couldn't go through with it simply because I knew it was going to delay my surgery so much - potentially 6 weeks (or more if it didn't work the first time) and I knew that realistically I didn't have that long to wait. It broke me because I had the potential ONLY chance of having children there in front of me and my decision was NO. If I can never have children because of this cancer, I will always have in the back of my mind that I could've frozen my eggs, I had that chance.. it'll be my fault (now don't worry I know it isn't my fault but these things never go away).
I told her our decision and she said that if it were her, that would be the decision she chose. She said it was very brave and that she would let my surgeon know straight away.
We left and I drove home (still not having cried at this point) and I got home, got on the sofa and lay down, wrapped myself in a blanket and turned the other way and cried (I couldn't hold it in anymore but didn't want Chuks to see). Chuks then came over and cuddled me and realised I was crying, I was proper ugly crying. When you can't breathe properly and you can't speak properly. All I remember saying was: "I'm just fed up"
(*Coming next: Everything surgery - the night before, bowel prep, pre-op drinks and the moment just before surgery*)