My oncology appointment in public was on Thursday and was booked into chemo then. It turns out my first dose is 8am Friday December 24th. I feel like the timing could be better…
I’ve got an hour appointment on the Wednesday to learn about chemo. To learn about how to take the drugs before and after the chemo dose to mitigate side effects. The prescription came on a piece of A4 paper.
The chemo I will be on is Carboplatin and Paclitaxel. I will lose my hair. I will most likely experience nausea and possibly vomiting. Fatigue. Lowered immune system. Muscle and joint aches and pains, pins and needles in fingers and toes…there’s a very long list of side effects. I will be getting a dose every 21 days, and 6 doses in total. I’m fairly sure that means my last dose will be April 8th. There will be good days and bad days – and I’ll get a handle of the pattern after the first dose.
To regain some control of the situation I got pixie cut last Saturday. Its a very low risk time to try crazy things with my hair as its going to fall out anyway. I might even dye it pink. I’ve found some gorgeous headscarves and an amazing ‘fuck cancer’ cap. I’m in the market for some dangly earrings now, and any cancer paraphernalia. I saw a T-shirt that said ‘My oncologist does my hair’. I think I’ll need to get that one too.
I often get moments where I’ve been feeling pretty normal, then suddenly remember I have cancer.
It’s going to be so great to see family over Christmas and I’m just going to hope that I’ve got some good days straight after chemo, with the bad days to follow AFTER Christmas. Chemo feels like a pretty shitty Christmas present to be fair.
When shitty things happen you have no choice but be brave, or strong. You have no choice but to pick yourself up and find your way forward – although life can at times feel impossible. Most of the time I find it really nice to have the fact that I have chosen to live my life as fully as possible, even after Mackenzie died, acknowledged. Because the truth is that that is one of the strongest and bravest things I’ve ever done. It didn’t (and still doesn’t) feel brave most of the time. But when I look back, I remember the terror I felt in mundane and every day situations. I never said a word to anyone – I don’t think I would have been able to articulate it at the time.
Walking into my place of work after 6 months of maternity leave, without dropping my baby at daycare – because we held her funeral months earlier. The terror of being asked about how she was doing battled with the terror of not being asked. The thing is, no-one ever knows the right thing to say. But being on the other side of the equation – I don’t even know what I wanted to hear. I needed her life acknowledged and talked about as deeply as I needed to not talk, and keep everything in the tightly wrapped boxes in my mind. One day, a while after I returned to work and walked through the staff cafe as I did every morning to drop my lunch in the fridge, I saw a donation box for Huggable Hearts, a charity we had used after Mackenzie died. A really beautiful charity that aims to fill the ’empty arms’ feeling of losing a child. They fill a material heart with rice – to the weight of the baby you have lost. Mackenzie’s was rather large – she weighed over 4kgs when she passed away. The moment I saw the donation box, my carefully constructed ‘work Sarah’ crumbled and threatened to overlap with ‘bereaved mother Sarah’. Was this about me? Did every one know? It wasn’t about me. I’m certainly not the only one to go through baby or child loss. There are so many more of us than we all like to think. But that day made me realise how carefully I kept work and home separated, and the boxes I maintain in my head.
I developed some healthy and some not so healthy coping mechanisms. I know now that I’m really really good at putting things in boxes, but not so good at bringing them out again. Which in some instances are fine – somethings don’t need to be intruding into every day thoughts constantly. However its a relatively tricky balance to find when it happens to be your baby in one of those boxes. To honour her, I can’t leave her in a box. The only place she can live now is in my mind and the minds of others who know/love her. It took Mackenzie dying to understand that I am an anxious person, and have been my whole life. It took her dying to be able to acknowledge that the ‘episode’ I had in 2012 in which I underwent cardiac investigation after was actually a panic attack.
I know I tidy/organise/minimise when I can’t deal or am avoiding things . It’s a running joke that I took all the doors off in our house in the midst of a minimising rampage that lasted days. I thought if I got rid of excess stuff, I could be calmer. It didn’t really work, but the doors are still gone, and I still find myself doing it fairly frequently. My house is never tidy because I’m ‘good’. The tidier it is, the more avoiding/ignoring I’m doing.
I’ve found myself obsessively tidying and organising since I’ve been home from hospital. I knew what I was doing and I couldn’t stop myself from doing it. There was a driving need for things to be in their homes, the places where they lived. I always feel that satisfaction of tidying the house and then feeling like I’ve controlled something. Unfortunately my time tidying and sorting meant that I caused my wound to weep again post surgery. I’ve had times where I’m completely incapable of making an incredibly simple decision. I’ve gone to bed the second Greg gets home from work as I can’t do one second more of parenting. Most recently I’ve had a huge run of being incredibly scatterbrained. What can only be referred to as ‘The Shower Saga’, where I’ve been so preoccupied it took me 3 showers (one after the other) to manage to shave my armpits and legs. The next day I refolded and rearranged all our towels and bathmat on the heated towel rail to dry my towel (after drying myself 3 times in quick succession after failing to complete the basic task of shaving myself 3 times) then didn’t switch it on. My towel was still soaking wet the following night. Today, I boiled the jug and put the water in my plunger, left it for 5 minutes, poured the water into my cup and then realised I never added the coffee.
I’ve cried 3 times since I found my lump. When I coughed and vomited post surgery, when my pain meds weren’t controlling the pain a few days after surgery, and once, in the early days after I got home. I hadn’t had the results back yet to say it was cancer, but I was feeling vulnerable and scared. I think I needed a cry next to Greg instead of alone in a hospital bed. I didn’t cry when I found out I would need major surgery, or would be going through surgical menopause. I didn’t cry when I found out how widespread the disease was, or how much bigger the surgery was than I expected. I didn’t cry when the recovery from surgery was so much harder than I anticipated. I didn’t cry when I found out it was cancer, or that it was stage 4. I didn’t cry when I found out that I was being recommended to have chemo.
But I’ve got to the point where I want that dam to break.
I’m now at the stage where I need to ask myself – is this helping or harming me? My boxes and my tidying, my avoidance and optimistic nature definitely have a place in my life and can be incredibly useful at times. However as I get older/ gone through tougher shit in life I have learned to realise not only what my coping mechanisms are, but when they aren’t helping anymore. When they are starting to harm. I think it’s time to unpack the boxes, and sit with the thoughts and emotions, despite how uncomfortable they are.
I have my oncology appointment on the 16th December, and have been told I will ‘get going’ with chemo prior to Christmas. Which by my calculations mean I should lose my hair very early into the new year. I’m hoping that I can have a good cry before then as I think the longer I leave it the messier it will be when it happens.
I have so much to live for. SO much. I have 3 wonderful girls and I can’t imagine dying while they’re still young. I can’t imagine not being at Tayla’s wedding if she chooses to get married. I can’t imagine not meeting Hazel’s first boyfriend. I can’t imagine not seeing Willa finish high school. Really, Willa is my biggest fear – what if I have way less time than I think and she doesn’t even remember me?
Low grade serous ovarian cancer is so unpredictable. When you google stage 4 low grade serous carcinoma, I’ve got a 5 year survival rate of 17%. I guess I see myself as a ‘good’ stage 4 though. I was ‘optimally debulked’ which is a really positive prognostic factor. That means they got all the visible cancer in surgery on the 8th November. Which is extremely positive. I’ve also got some worries – for starters it got to stage 4 without any particularly obvious symptoms. The symptoms for ovarian cancer are incredibly vague. I feel most women I know will have at least a couple of the symptoms. I had painful bloating, weight loss, and fatigue. I don’t feel like I’m a super sensitive person, but I’d been to the doctor about all three this year, then had an appointment about my lump. I wrote off the weight loss due to still breastfeeding Willa. I wrote off the fatigue due to having a young family, plus a teenager who gets home late. I wrote off the bloating due to dietary issues – I even saw a dietician and went on a low FODMAP diet to try and narrow down the cause of the painful bloating. My CT scan and MRI also really didn’t show the extent of the disease. Neither did my blood test of my CA125 level. My fear about it growing back, while all the screening tests come back clear aren’t exactly unfounded.
I also realise that no matter how positive I think, sometimes cancer is just too much to beat. I told Greg I’m too stubborn to die and let anyone else raise the kids – but what I left unsaid was that I may not have a choice. Because the reality is that no matter how strong you are, sometimes cancer just beats you anyway. But I’ll give it as much of a fight as I can. Plus, I still may be one of the lucky ones where I can go years without any further intervention needed. Cancer doesn’t care if you’re strong or not. Its a f**king tough road to travel for anyone going through it, but sometimes, its just too much no matter how much the person wants/needs to live through it.
Low grade serous carcinoma is rare (of course it is!) and there is still a lot of research to be done. It’s a really controversial question as to whether chemo is beneficial or not. The upside of low grade serous is that it is slow growing. The downside is that it doesn’t appear to be particularly responsive to chemo. Chemo works on rapidly dividing cells/cells that are significantly different to body cells. Low grade serous cells fly under the radar and are similar enough to body cells to not cause too much attention to the chemo. Which turns it into a hard-to-treat cancer.
I’m really fortunate that I’ve got some really amazing professionals looking after my care. I saw my medical oncologist yesterday evening and I knew whether to offer chemo or not was going to be the biggest question of the night. I expected Letrozole (a hormone inhibitor) as a maintenance for -I think- the rest of my life. But whether chemo was offered was something I was worried about/stuck on for quite some time.
Last night, my medical oncologist said that if it was her, she’d do chemo. I am young, and have a young family. I have a lot to live for. There is a chance it will help – and therefore its worth doing. I agree – in that I’ll try everything I can. I don’t want to regret not doing this and thinking back with a ‘what if’. I’m also happy to follow advice of medical experts.
So – chemo will start as soon as possible. Before Christmas. I was run through the side effects. I don’t think its going to be an easy time. I don’t think the kids will find it fun. But theres a chance it’ll help. So I’ll take it.