After meeting with my oncologist, I was referred on to a fertility clinic and within a few days myself and my boyfriend had our first appointment. I have to say at this point, my poor boyfriend! In the past two weeks not only had his girlfriend been diagnosed with cancer but suddenly he was attending fertility appointments. We both knew we wanted to have children and wanted to do everything to make sure that in the future we would be able to and although many of my friends have children already, I think we both still see ourselves as much younger than we actually are! So this all seemed a tad odd to us, to say the least but he was incredible, present and willing throughout the entire process.
First impressions, especially when it comes to something as important as this are vital and our first impression with our fertility doctor was a bit unfortunate! We sat down in front of her and after introducing herself, her first words to us were "so how long have you been trying for a baby?" It didn't instill much faith in me that the doctor who would be looking after us clearly hadn't looked at the referral letter sent to her by the oncologist and I just replied with "we're not trying for a baby, I have cancer." There was no apology for this, just an "okay, I'm just trying to gather information." This ended up being the first incident of many throughout the treatment where the communication was incredibly poor and just made the whole thing confusing and more difficult than it had to be. My intention in this blog is not to moan and complain, I know I was lucky I even had the opportunity to try fertility treatments before starting chemo but without naming any names I will give an honest account of my experiences!
The doctor went through our medical histories and after some tests we were deemed suitable to go ahead with attempting to create embryos for freezing. Before treatment started we had to attend a counselling session, just to talk through our feelings about the process and to voice any questions or worries we had. Two days later, I had to come back to the clinic with a giant bag of medication, to be shown how to administer it to myself. I was started on a tablet called Letrozole which is used to treat hormone positive breast cancers, triple negative is hormone negative therefore there was no need for this medication, as my oncologist would later tell me. I was then to start on an injection called Gonal F to stimulate follicles to develop and mature. This is where it started to get confusing again! The doctor told me to start Gonal F that evening, the nurse told me to start Gonal F in 2 days time. I didn't realise until I got home that I had been given contradicting information! I tried to ring the clinic many many times and couldn't get through to anybody, I rang the hospital itself and nobody could give me an answer. I stressed for hours and eventually took the injection because I was scared that if I didn't I would mess up the entire cycle. The next day I rang the clinic and was told by a nurse I shouldn't have taken it and that in the nurses words "the doctor wasn't used to giving instructions!" The nurse was very helpful though, she reassured me that I hadn't messed anything up by taking the injection early and told me to just follow the instructions the nurse had given me (not the doctor!).
I continued on with the Gonal F and had frequent appointments in the clinic to make sure everything was progressing as it should be. My experience with the fertility medications was good. I didn't have any hormonal issues which caused me to act any differently. I also had no problem injecting myself, its a tiny needle into the stomach which stings the smallest bit but then again I am not squeamish so maybe I'm not the best judge of the experience! I was on the Gonal F for about a week and a half before they were happy with the progression and gave me instructions on how to manage my medication for the next few days, before coming in for the egg retrieval. This was the first time I had been given written instructions and I was delighted because I knew I couldn't mess it up if the information was right in front of me.
On Sunday, myself and my boyfriend went in to the clinic for the procedure. The two weeks had been pretty pain free up until this point. My abdomen was very tender and I was walking funny, the nurses reassured me this was good though as it meant I had lots of follicles. When they checked that morning I had about 16 follicles. I was brought in to a small procedure room to have the procedure done. The procedure was explained to me and I was sedated, therefore I felt nothing and wasn't aware of what was happening. The procedure is very quick and only takes about 10 minutes or so.
Afterwards, I was as high as a kite chatting with the nurses. I was even Snap Chatting my girlfriends from the recovery room - see below! They had managed to retrieve 9 eggs and I kept asking them where my other 7 eggs had gone! They explained to me that under ultrasound it may appear you have more follicles than you do, that some follicles will have no egg present when they attempt to retrieve them. I was a bit disappointed with this as I felt 9 seemed like a small number but I was also happy that they managed to retrieve anything when I had been on the medications such a short period of time. I was sent home fairly quickly afterwards, even though I was in quite a bit of pain. The drive home was horrible, every bump in the road and I would wince with pain. For the rest of the day I just stayed in bed but as the day went on I had pain literally from my toes to my shoulders. I didn't have a clue if it was normal as again no information had been given to me about it! Dr. Google was my reassurance that this pain was normal and people often felt it after egg retrieval due to the ovaries being pierced. The pain remained with me for a good few days afterwards and I was waddling around the place also!
Now the fertility side of things was over, it was time to meet the Oncology nurse to prepare to start Chemo. I was to hear from the fertility clinic on Tuesday, Thursday and Saturday of that week with an update on the progression of the embryos. On Tuesday, I had 5/9 embryos which had made it to the next stage, unfortunately 4 were not strong enough. On Tuesday I also had my first meeting with the Oncology nurse. The nurse was lovely, she explained everything to me in detail and gave me information to bring home with me. My plan all along had been that once I finished fertility treatment, I would have an implant called Zoladex inserted, which would shut down and protect my ovaries during chemo. The nurse mentioned to me that Tuesday, for the first time, that when the implant was inserted, it should be given a week before starting chemo. I was meant to start chemo on Friday...it was Tuesday...what? She then proceeded to say "you have 5 embryos, is the implant really necessary?" I generally am a pretty calm, composed person but when she said that to me something just snapped. Firstly, nobody had given me this very important information to allow me to make an informed decision in the first place, secondly, I had 5 embryos now but that didn't mean that they'd make it to freezing stage and thirdly, I am 29, going into menopause at 29 because I wasn't given the correct information AGAIN was not an option for me.
As I mentioned in a previous post, the HIQA guidelines state a person should start treatment within 4 weeks of diagnosis. If I started that Friday it would be 5 weeks. If I gave Zoladex a week before starting it would be 6 weeks. Waiting another week just was not an option for me so I decided to have the implant inserted on Tuesday and start chemo on Friday and hope for the best.
On Thursday, I got a call to say 3/9 embryos had progressed to the next stage. On Friday, I had my first chemo. On Saturday morning, feeling a little worse for wear after my first chemo treatment, I got a call from the clinic to say that unfortunately none of the embryos progressed far enough to be frozen. Obviously, it was a hard thing to hear, I was very upset and was heartbroken telling my boyfriend but I had no choice but to move forward and hope that the Zoladex implant would be enough to save my fertility.
Throughout my journey so far, I have noticed a huge lack of communication between health care professionals and with me about really important things. If all the information had been given to me the very first day I met my oncologist, I may have made a different decision. I'm glad that I had fertility treatments, even if they weren't successful because now I know I did everything I could to save my fertility. Fingers crossed it was enough!
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