I used to post on here ALL the time, and by that I literally mean ALL the time. Every thread, any topic. But since my active treatment ended last Autumn I have gradually posted less, though I still pop in and read what’s going on quite a lot, but I am not so obsessive now.
However, today I am breaking the status quo and posting as I need to bulb and it’s hard to do it in the real world. I just need to talk and don’t want to upset my family, so please bear with me. I’m going to say the lot and hopefully will feel better by the end of it.
I was diagnosed spring 2010 with a stage 1 (hopefully), grade 3, weakly ER positive, her2 negative ductal cancer and I had a WLE, Chemotherapy, radiotherapy and am on tamoxifen. My diagnosis came totally out of the blue. I had just turned 36 and was married with two boys aged 4 and 2. We were trying for a baby when I was diagnosed but fortunately had not caught pregnant yet.
I was in total shock when I was diagnosed. I couldn’t eat, I lost a stone within a few weeks. Chemotherapy hit me hard, but I was lucky that I had no major illnesses through it. I found FEC really rough, it knocked my hormones for six, which nobody had warned me about, and I felt sick all the time. Even looking at the bruises where the cannula had gone in made me feel like throwing up. I couldnt eat anything red or drink anything red or orange. I went through every food possible to find something i would eat, and searched the supermarket aisles for drinks i could stomach. Even water made me feel sick, especially after i read that chemicals can leak from plastic bottls into the water and cause cancer. Before then i’d been buying the little bottles of water so i could sip it through the day and keep track of my water intake. After that, all i could imagine i couldtaste was chemicals in all water.
I lost more weight as I just couldn’t eat. I was crying a lot and still in a state of disbelief. I hated the cold cap,
decided it hadn’t worked and shaved my hair off. I hated not being able to look after my boys properly. Then I had taxotere. I had an allergic reaction to the first one, the room was full of doctors and nurses within about ten seconds of my nurse pressing the big red he’ll has broken loose button on the wall. One of those oncologists was my best friend. Irony of ironies but my best friend is a breast cancer oncologist. A huge dose of steroids, piriton and a very very slow drip got the taxotere down me, and the subsequent treatments, but I cannot describe the terror I felt returning for tax 2, I had quietly said goodbye to my family and my boys before I went in for the infusion as I was convinced it might kill me off this time. However I begged my consultant to keep me on tax. He said it was his decision and he had to make sure he didn’t kill me with the preventative treatment. My view was that if he thouht I needed it at the outset then I obviously did need it and wanted my best chance at being well. Anyway, the infusions went smoothly but the taxotere side effects hit me in a different way. Every nerve and cell in my body seemed to jangle and vibrate, I didn’t feel sick though and could eat again, though it didn’t taste right!
After chemo I had radiotherapy which was ok. In a weird way I quite liked going as the staff were lovely and looked after me. I also started my tamoxifen. My periods had stuttered and faltered on fec and totally packed in after my first taxotere. I’d been having hot flushes since fec and they were quite bad still whilst having radiotherapy, but not anywhere near as bad as some ladies recount.
After active treatment, I tried to come back into the world. some friends had disappeared off the face of the earth. Othre friends/associates didn’t know what had happened to me at all as I went into a kind of retreat during dx and treatment. I posted all the photos of me through dx, treatment and after on my fb page and announced to the world really that I had had breast cancer and chemo. That was a really massive step forward for me as I stopped feeling embarrassed about “failing” by letting myself get cancer. Christmas was good, I threw myself not it, and new year was accompanied by an urge to accept that 2010 had been about my getting breast cancer but that 2011 would be about raising awareness in young women, raising a bit of cash for bc research and reclaiming my life.
I generally feel ok now. I am naturally a positive-ish person but when I get a low I seem to sink very deep. This year I have done quite a lot of raising awareness, various talks to organisations, media coverage etc. I find these scary but enjoy them. It helps rebuild my self esteem to do these things and gives me a sense of achievement. I feel physically well, though do get tired. My periods never came back though, although I do still feel an underlying hormonal cycle.
That’s the background, which leads me to the reason for this post. It’s that I am feeling rotten this last week or so. I know why, I know it’s normal, I know it will pass buti also know it’s bl**** awful when I feel like this. The first reason is that people I know with bc now seem to be getting secondaries, or even dying. I know this is normal, it’s why we are all terrified of the disease at dx, but you get to a point when your contemporaries in treatment are being lost and it’s bl**** hard. It feels like a sniper is picking us off at random, one by one, or that we’re all shipwrecked at sea and the sharks are randomly biting our legs and pulling us under and suddenly, plop, another ones been got and will it be me next? I get scared to invest too much in bc friends on one hand, whilst desperately needing to talk with people with bc who understand me on the other.
On the other end of the scale is the baby thing. I am devastated I seem to have lost the chance of another baby and it’s not the future and the family I had planned. I feel very lucky (whilst being still scared of course) to have hopefully found my cancer early and have a decent prognosis, and it feels churlish even to myself to feel so upset. I have two boys who are wonderful and I know I should be content, but I feel robbed. It’s come to a head this weekend, as I new it would, as my best friend the oncologist has just had her third baby. We went through our other two pregnancies together and our families are meshed together. It’s like a gaping hole in my heart this weekend. I am pleased for her, I really am, but part of me wishes she hadn’t chosen to have another baby as the isn’t another person on earth whose third baby would have affected me quite as deeply. She is lovely and knows how hard it is for me and trying to be sensitive, I am trying to make this a happy even which is about her and her baby, not about me and my breast cancer. But I am weeping inside all the time. I want to help her, she needs help, she’s had a section and has no family nearby. She has helped me immensely over the last two years and I want to help her. I’m going to meet the baby this afternoon but I’m a bit all over the place. The last week or so has been an emotional nightmare for me.
Baby wise, I have no periods so that kind of puts a damper on my ability to have another baby. I also have two little boys I am grateful for and have to put them first, not myself. I can’t put myself at risk for my own wishes, I need to do my utmost to be there for them. Thirdly, even if I was able to get pregnant, I would not come off tamoxifen earlynwhich would take me to 41 and my husband to 45. He’d be 60 with a 15 year old child, I’d be 56. , or possibly dead. It’s not fair to the child. So in my heart of hearts I know there’s no more babies for me but I am gutted. And I know it’s not as bad as for girls with no children, and for those suffering recurrences, but for me it’s still devastating.
I just want to wipe out the last two years and for it to be me lying with a new baby next to me in the maternity ward. I hate breast cancer and what it has done.
So that is where I am up to now. I know this acute period will pass. I know I will get through it and I have faced worse. But it’s still cr@p having these blips.
Love to all going through similar and worse
V
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