Sigh…..where has the last few years gone… now it’s April 2015

Gosh where has the past 3 years gone!!  Well I got diagnosed in February 2012 with stage 3 invasive and high grade DCIS breast cancer as well as pagets disease (it had travelled to my nipple) and it was in my lymph nodes as well, my tumour was over 10cm, yep that’s right, it was HUGE!! .. my mastectomy was expedited and on the 1st March 2012 they removed my right breast entirely and surrounding tissue and my lymph nodes.. they started me on my first chemo only a few weeks later as they didn’t want to wait any longer.. my first chemo destroyed my veins 🙁

Then I had to get fluid removed from the wound site and whilst there they realised I had a temperature and wasn’t well, so they admitted me to emergency straight away… With FEC90 you can’t get any infections and your temperature must not go above 38 or you have to go to hospital immediately.. it’s because the chemo kills your cells and your immunity and if you get sick, you could die.. So there I sat in Westmead Public Emergency for hours and hours thinking I would be given some antibiotics and sent home but I was then told I was going to be there for a few days.. so I waited to be admitted to a ward.. whilst poor Shane raced home, grabbed me jim jams, books, toiletries and the bear he got me whilst in hospital for my mastectomy.. poor thing was on a 6am start the next morning and here he was driving back to the Blue Mountains and then back to Westmead and then back home to sleep and go to work..  I spent the night and next day in emergency waiting for a bed in a ward.. with my door being closed as I was highly susceptible but then being left open and of course me going into the toilet all were using from emergency.. no chance of catching anything there lol.. and all with my iv drip attached.. I finally got wheeled to a ward where they spent the next week pumping me full of antibiotics and fluids, where I lost most of my hair, where they had so much trouble finding a vein that they used my feet and anywhere they could to get blood every day to test my counts.. and they recommended I get a port as well..  and so for the week before Easter 2012 I sat in hospital in a shared ward with low white blood cell count and infections thinking I would be better off at home… I met some lovely people but sadly the reality of breast cancer really hit home when the lady across from me had been diagnosed with mets in the liver, her treatment had been similar to what mine was going to be and now she was there as she wasn’t feeling well.. she was surrounded by family and I heard her say to them I don’t want to do chemo again.. sigh…at that time I didn’t get why she felt that way.. then the nurse told the family that the palliative Dr would be in to chat to them soon, now even then I knew that word and I knew it’s wasn’t good.. so the rest of us sat there while the Dr told her and her family that she had weeks to live.. I lay in my bed sobbing for her, her family, friends and for their impending loss.. when she was leaving I gave her a hug and told her to make the most of the time she had left…. I was shattered for them.. and of course I felt fear, that could be me.. what if…  During my stay my hair fell out in clumps, it became a joke with the nurses where they would point out clumps of my hair .. I finally got Shane to borrow some scissors off them so he could cut my hair short till we could get home and shave it.. thank goodness I had gotten him to bring one of my new chemo/cancer hats in so I could wear it… With much excitement they finally released me when my white blood cell count started to rise enough for me to go home.. yayyyyyy I remember walking out of there, the sun was shining and I didn’t care who saw me in my jim jams and bunny slippers.. I was going home and that was the best thing in the world.. that night we shaved my head, I cried not as much as I thought I would and not for my hair but for the symbolism of it..

The next task was to get my port in.. yep I hear you ask what’s a port.. well it’s a device they insert under your skin in your chest that is attached to your main artery and it enables them to IV the chemo and drugs into you without having to find a vein.. which was extremely difficult with me… they can also get blood out of them most of the time…. this was one of the best decisions I made whilst I have an obvious scar there now from it, it made my life and the nurses life so much easier… and oh well what’s another scar to add to the others 🙂

Then it was back to chemo, more chemo, more chemo and more chemo… this first chemo I was doing was called FEC90, OMG that was just awful, it’s the combination of 3 different chemicals and all of them are nasty, they kill your cells but the cancer cells as well…. each one made me very sick.. I vomited, was nauseous, could hardly move for almost the 3 weeks between each one, lost my hair and had trouble with anything and everything… but I did the 4 of them and then started straight away on the next lot of chemo as they couldn’t get me into the radiation therapy..

Sigh, Taxol, well that was fun as well, 12 of these and weekly… every Tuesday Shane and I would drive into Norwest and sit with the gorgeous team at Specialist Services…. the first couple went ok but I was still reeling from FEC90 and then the Taxol started to have it’s own effects… my toe nails and finger nails started to go funny.. I lost most of my big toe nails, I got numbness and tingling in my fingers and toes, my legs and ankles doubled in size at least and I was sooo exhausted I could hardly walk anywhere…  I also started Herceptin as my breast cancer was HER2 positive, up until a few years prior this drug was not available on the free list but I was lucky.. I would have paid the $40k plus if we had to, it increases your chances of survival significantly and even though we already had almost $15k in out of pocket medical expenses and me not working or earning an income, we would have found the money…

I then went on to have over 30 hits of radiation and got fried like a lobster but much much worse.. the pain was pretty bad and the burns continued for weeks after I finished my treatment… I could hardly move, think about really really bad sunburn and times it by 100…

Then early 2013 I had my reconstruction… during my mastectomy, my surgeon inserted an expander and then over the next few months, my reconstruction surgeon filled this with saline to stretch the skin back out and create an area to insert the implant into.. I couldn’t afford the larger size implant so I opted for a C cup and my reconstruction surgeon would do a reduction on the other side… this was cheaper, I know “what the”.. and yes any woman going through breast cancer has to pay significant out of pockets for breast reconstruction surgery as medicare don’t cover it.. you can go public but the waiting list is around 2 years 🙁

The surgery went well and I was starting to feel like what we call “the new normal”.. and was looking forward to getting the all clear and start using our little snow babies that were waiting patiently for us after my cousin had done another egg donor cycle for us and we had 11 embryo’s in the freezer.. but in May 2013 it all went wrong, I felt some dampness in my top.. of course I don’t feel too much on that side but did feel something to see that I had fluid leaking from my right foob.. yep that’s what we call them… I texted my breast cancer nurse and she said to monitor it and if I got a temperature to let her know.. it continued to leak and I was truly concerned, no one else was but I was terrified beyond words… I didn’t feel great by the Sunday night and during the night declined rapidly and by Monday morning was so sick with temperatures and infections I was rushed to my surgeon at the hospital and admitted immediately…. for days I was soooooo sick I couldn’t keep food down, the pain was excruciating, I was on the strongest of antibiotics and I think I cried a lot…  by the 3rd day after being up since 4am in extreme pain and vomiting up so much bile my Dr decided to do an emergency surgery and remove the foob, the infecitons and see what was going on… I started to get better as such but now was foobless…..

Then about 3 weeks later, I got Shane to check my wounds as they didn’t feel right and we found that they had opened up in several places… argghhhh… we rang our nurse and she rang the surgeon and he said just keep an eye on it.. finally days later we were back to see them all again… they called them radiation ulcers where the tissue and skin were sooo damaged they opened up and were having trouble healing.. so after weeks of daily wound dressings and packing them with no change, my surgeon sent me to Prince of Wales Hyperbaric Oxygen Therapy x 5 days a week.. so I travelled into town on the 8am train, caught a bus, did my hyperbaric, had my wounds dressed and came home, that took the whole day and by the end of it I was exhausted.. so 12 weeks of this with a few days off one week to go down to Melbourne and see my Mum…  No change, what the… so they did a CT scan to find I had a rare condition called Osteoradionecrosis… again what the.. my tissue, skin, part of my rib bones and surrounding areas had died from the infections, temperatures and radiation…  My surgeon and radiation oncologist were stumped as to why I had it, it’s so rare these days for breast cancer.. sadly throat cancer patients can get it as the radiation is required around their jaw and often they get it in their jaw etc.  Anywho so I needed more surgery… a “lat dorsi” now many women do this surgery for reconstruction, mine was for the osteoradionecrosis as well as I figure we may as well re-do the reconstruction as well.. so the surgery was done, they took a large flap of skin, lat dorsi muscle and tissue from my back and put it on my front.. so yep I’m back to front…

Then next surgery was to insert the expander and then they weekly inserted saline to stretch the skin out again… and let me tell you that’s not comfortable as well.. it makes all that areas soooooo tight and uncomfortable and painful… but no pain no gain right…  And then the surgery to insert the implant early 2014…  Gosh we must be getting closer to the end of this and getting to use our snow babies..surely..  And this is only a small part of what went on.. I haven’t even gone into the pain and all the other issues… surely this is enough…

So I heal, I get the all clear from my surgeon, I see my oncologist, I get full body PET scans done – these are not much fun either.. and then I get yayyyy the all clear, I can use my snow babies..

So we meet with our Fertility Specialist and we start the cycle… and then we get the call from the scientist.. that our embyro’s have not survived the thaw.. I kept saying to her, but we have 11 and she had to tell me several times that they were all dead.. as I write this tears are flowing as this was just heartbreaking and devastating.. these little snow babies were a huge part of what kept me going through all the treatment…. how can you lose that many embryo’s?? it’s just not possible and it’s not normal.. in between tears I rang the IVF clinic in Melbourne where we had one little snow baby left on ice from the first cycle my cousin did.. we managed to make it happen and I flew down that weekend to do the transfer on the Tuesday… I got to see my Mum as well which was lovely and caught up with my dear and wonderful friends… ok deep breaths, embryo survived the thaw, transfer done and now the 2ww… we get a positive pregnancy result yayyyyyy and my HCG levels are good and continue to rise.. ok tick, tick, tick.. those hurdles crossed.. then the 7 week scan and our world falls apart, there’s no heartbeat and no fetal pole.. the embryo has not grown into a baby, it most likely had chromosomal problems :'( words just can’t describe our loss… we then had to wait 13 days and do another scan to confirm that the baby didn’t have a heartbeat still and was not viable.. this was just cruel.. finally we had that confirmation and organized a d&c…  We had planned to go to Melbourne to see my dying Mum so we did the d&c a few days before driving down there.. I cried the whole way down.. and when we stopped at Jugiong for lunch, this mum with her hubby and family were coming in the door, the little girl was taking her time and the mother said “Mabel” move and she didn’t, I smiled at her and said it’s ok.. the mother then said to me “do you want her” oh my…. she didn’t mean it but it broke my heart and I cried even more if that’s possible.. I wanted to go in and ask her to be our new egg donor.. I almost did…

So we spent time with my Mum and I spent the next 3 to 4 weeks after the d&c in pain and discomfort and grieving for our losses… we weren’t ready to give up yet on our dream.. we hadn’t had a chance at all.. so we started looking again for a new egg donor…. you think running this website, I would find one easily but everyone assumes that and therefore they don’t offer.. and I guess I don’t put it out there enough as well as I don’t want to take a donor away from someone else, sigh….  I started our search, I posted on Facebook, I put an ad up on pay it forwards on Facebook, I placed my own ad on here, and another egg donor website even had the audacity to text me and ask me if I really needed a donor or was just doing it for publicity, how could they ask me that… I have always shown such integrity and honesty and to even think that about me was just disgusting….

Then our friend offered and we decided to take her up on it.. she’s amazing for an extremely busy person, she just made all the appointments happen and in January 2015 we were starting a cycle with her.. but sadly we got 6 eggs but none of them were mature 🙁 we all cried… our friend offered to go as many times as we needed… we spoke to the FS and he assured us it was highly unusual and that he was sure if we went again we could do better… we were considering going overseas at the time but after consulting with the FS he convinced us to try one more time..  so we had to wait for a period in between and we went again.. we got 12 eggs but again most of them were immature and/or didn’t fertilise… and we ended up with 2 very poor day 1 embyro’s in the freezer that the scientist said won’t probably survive the thaw…

So I am ready, prepped for the phone call that lets me know if they survived, surely Easter Sunday will be our good luck charm… and you know I created this website one Easter many years ago… so fingers and toes crossed that I don’t get a call tomorrow morning, the scientist said she won’t call me if they are ok… but I’m not holding out much hope for them.. .and then of course as anyone knows having gone through IVF, there’s the will they survive till transfer, will they implant, will I get a positive pregnancy test, will my hcg levels be good, will my hcg levels increase enough, will there be a heartbeat at the 7 week scan, will I miscarry… sigh…  and will I get to the 12 week scan… and then the next scan and the next one … it’s not just yippee I’m pregnant, it’s all the hurdles to get through before that little baby is in our arms…

Well it’s past my bedtime and I’ve already written too much, sorry 🙂 so good night, happy Easter and I will keep you updated..

love from us Dianne and Shane xoxox

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Dianne - founder of Egg Donor Angels

Founder of Egg Donor Angels - helping others to have their family Mummy of two egg donor conceived boys Breast cancer thrivor Passionate educator and advocate of donor conception and infertility

2 thoughts on “Sigh…..where has the last few years gone… now it’s April 2015”

  1. Hello I’m Noreen. I really do not know what to say. Ur story is heartbreaking.I have never been an egg donor and don’t have children. I’m 29. I don’t know what is involved. But open to talk about things.

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