It’s the middle of summer and I’m stood on the stairs in the nursery, on my way to collect my one year old. I run into a mum I know vaguely and the conversation starts off normally.
‘That’s fantastic that Clover’s doing so well! You must be so relieved to have your lives back to normal’
I burst into tears.
August was supposed to be our month of returning to normality; Clover had come home from hospital in June after being paralysed by Guillain Barre Syndrome, an auto immune disease. She was making great progress with learning to walk again and we were looking forward to spending the rest of summer relaxing and maybe fitting in a holiday somewhere before she started school in September. We were still making endless trips back to the Childrens’ hospital for physio appointments but the light at the end of the tunnel, her full recovery, was in sight. And then it happened all over again, a new bombshell which turned our lives upside down again.
I spent the earlier part of summer experiencing creeping anxieties and preoccupations about my health which seemed to be triggered by anything and everything. I guess it was understandable, given the trauma of having a child affected by a life threatening illness. The overwhelming theme running around in my head was that one bout of bad luck doesn’t insure against getting any more. I started taking a particular interest in acquaintances with cancer, and even asked the nurse at my smear test what age mammograms start at.
And then finally, towards the end of July, I found a lump. It was a Saturday morning and I was lying in bed and I just found it. I don’t check regularly and can only think that something felt odd or a bit painful and I raised my hand and there it was, clearly felt on the underside of my left boob. Clearly, it hadn’t got there overnight but recent weight loss (which came after stopping breast feeding at the beginning of the year) had clearly made it more obvious to find. Panic crept over me immediately and has been my almost constant companion ever since that Saturday morning.
I remember August now as blocks of time, with different amounts of despair, shock and worry associated with each; I went to see my GP early the following week and was immediately referred to the breast clinic for diagnosis. That was a two week wait of fairly substantial worry, tempered by assurances that it was probably nothing (for most people my age, that is the case). The appointment day finally came and although I was extremely nervous, I tried to keep in mind that everything would probably be ok. But it wasn’t; from the moment I first walked into the room to have the mammogram, everything seemed to happen in fast forward motion. I was scanned, then scanned again as the Doctor wanted to get a better look (cue panic). There was supposed to be a fairly long wait between the mammogram and the ultrasound plus diagnosis, but I seemed to be called almost immediately (panic unbearable now). Then I was lying on the table, coated in gel, figures stood overhead peering at me, and the news came that it was probably malignant, breast cancer, not a cyst, not something to walk away from and forget about.
I felt myself physically and mentally curl up like that plastic fish that you got out of christmas crackers years ago, the one that rolled up when it lay on the palm of your hand. I felt like something that had been run over, then left in the road to be run over again, while everyone watched. I felt desolate and abandoned and condemned. I didn’t really feel the biopsy needle but winced when I saw it and felt so wounded. Wounded by everything that’s happened over the last couple of years: the C-section last year, the baby in special care, the sleepless nights and exhaustion that comes with a newborn, the mastitis, the terror of not knowing what’s wrong with your rapidly declining child and then the weeks spent in limbo living in the childrens’ hospital. And now this.
It’s not that the NHS or its amazing staff are brutal and unsympathetic, but at that point of diagnosis, there isn’t really anything anyone can do to make you feel better. They can see what is almost certainly cancer but that’s about it. I was given a biopsy, had a quick chat with a surgeon and a MacMillan nurse then was sent home to wait another week for biopsy results and treatment plan. I remember being told by the nurse that breast cancer outcomes are excellent these days but the unknown still consumed me and I spent that week barely eating or sleeping and just trying to breathe through each day. And it was during that week that I had that conversation at nursery. In fact, I had that same conversation several times during that week of uncertainty with various people; neighbours, friends, people in shops, everywhere. Conversations starting with everyday chat and ending with me crying and blurting out the word cancer and telling people I didn’t know what was going to happen, if I was going to be ok.
The next appointment finally came around, and off we went back to the hospital to find out what it was I had, and what they were going to do. And then there we were, back in the same room, with the surgeon telling us it was a grade II invasive ductal carcinoma, oestrogen and progesterone receptor positive. Basically very treatable, but need to get on with it. I was given the choice of immediate mastectomy with chemo afterwards, or start with chemo to reduce lump then a lumpectomy/mastectomy afterwards. My initial instinct was to beg them to chop off as many body parts as it could, immediately, in order to rid me of cancer as soon as possible but once I was able to calm down and think rationally, I opted for chemo first. Both options would be followed by radiotherapy and drugs.
Let’s now fast forward to today. Ten weeks have passed since that awful day when cancer was diagnosed. I’m sat here typing this and sporting a rather short, patchy haircut but I do still have hair. And I feel well, really well, at the moment. The rest of August passed in a blur of MacMillan leaflets (given to me but mostly unready), lying in the garden, wild swinging between pessimism and optimism and generally trying to adjust to the new reality of being ill for the rest of the year and a little bit beyond. I’ve had two rounds of chemo (they’re every three weeks and there’s six rounds in total). The first round was a bit grim and I got through the first few days of hideous nausea, fatigue and other side effects only to end up in hospital a week later with neutropenic sepsis (a week after chemo your body ends up with virtually no immunity so even minor infections can be life threatening). It’s never fun being admitted to A&E on a Saturday night but the days in isolation which followed allowed me time to sleep, read, rest, contemplate, cry, offload and generally get my shit together a bit.
The second and most recent round went better; this time I fasted beforehand (you can read some info about how it works here) and got through the cycle without feeling too ill and avoiding trips to A&E. I work most days, albeit at my own pace and around everything else that’s going on (been meaning to write about my business venture all year but everything else got in the way – will do it very soon!). I do the school runs, nursery drop offs, housework and shopping. I go out when I can and in some ways feel and look better than I did a year ago. I am a healthier weight, my remaining hair is just about passable as a regular (albeit very short) hairstyle, and I have a new-found enjoyment in wearing interesting clothes and accessories, although I fear some days my give-a-shit might be slightly broken as the accessories get more, er, outlandish.
I feel a bit uneasy at times about adjectives like brave, strong, superwoman and so on. I try to Get Shit Done, like I always have, but now have to fit it in around the ups and downs of chemo cycles and the endless, endless hospital appointments. I’m shouty mum on the school run, stroppy steroid rage woman, I’m scared, shocked and at times bemused at the timing of it all. But then there’s never a good time for anything, and actually it could be a lot worse so I’m learning to just get on with it.
The kindness and support of others has made a massive difference: the meals left on our doorstep by kind neighbours, the many adjustments made by school and nursery so that I can do drop offs without impacting my health, the cards, the listening ears, the amazing MacMillan nurses, the hugs, my mum coming to stay and help me look after the kids, the list goes on. I’m so grateful for all the kind words, messages of support and offers of help. Most days I get by fairly well but it’s so nice to know that so many people are there if I need them.
I don’t plan to write regularly about having cancer; it was nice to get the events of the last few months into a blog post but I want to write about other stuff too! Besides, there are already some excellent blogs out there written by amazing women who are dealing with cancer and their writing has helped me a lot in many ways (in particular I would recommend Not Today Satan, Big C Little Me and Breast Cancer and Baby).
So that’s the last few months really: fear, shock, panic, sadness, anger, nausea, pain and despair. But I’m getting my head around the new routine and next year will be better. Meanwhile, I’ll keep taking the Domperidone and googling eyebrow stamping kits…