Part 14. The half way mark. Highs and lows.
Blimey it’s been an eventful time since round 3. Proper highs and lows, two trips and a short, hot summer. Let’s start with the highs shiz shall we?
Round 3 was on Tuesday April 3rd with my girl, my oldest bestie, KP, who was ‘celebrating’ her birthday. Natch she opted to accompany me, because how else does one want to celebrate? We did slot a b’day brunch in just ahead of time, not least as I quickly realised eating properly before chemo is a smart move. She (Kristy) was the lucky recipient of gifts just after a dump of steroids had been administered in to the trusty picc line. I did good. My memory is crapsville due to chemo brain (real thing), and I seem to have a world more stuff to do and to remember, but I managed to organise meaningful gifts on time which pleased me. And her I hope!
Here we are looking resplendent with our baldness and gym gear respectively…
That all went to plan and we chatted during the fairly speedy administering of the last round of EC, the double-tizer-one-clear combo. It decided to have it’s last hoorah with me at around 7pm while cosy on the sofa at the deluxe respite retreat that is mum and dad’s. Having let me off fairly lightly previously, the nausea that kicked in was enough to have me dropping anti sickness pills and have a washing up bowl next to me we watched Stand Up 2 Cancer Celeb Bake Off….fast forwarding the stories because, well, just no right now. Also made my legs ‘go’. They were weak, jelly-like and heavy all at once. So every time I needed to pee (tizer pee), I shuffled like an old woman with mum checking whether I needed assistance. Zimmer for the youngish bald woman please! That combo was nice. Fortunately it started to disappear around lunchtime the next day.
This recovery coincided with me taking leave of my work emails for a sarnie and a cuddle with my 1 year old niece who visited with my brother. She was on the finest form and very interested in my banana so we ended up sitting together for the longest time we’ve had in her 15 months on earth, which was medicinal and surprising given I looked scary. Our time comprised of me feeding her little snacks, her generously passing me a lot of things then retrieving them quickly, some ‘reading’ (her turning the pages as I pointed and said some words very quickly), and some cuddles initiated by her. I felt very very refreshed. She’s beautiful and made me smile, as you can see here…..
As ever I’ve been hugely well looked after. Mum and Dad, KP, little niece, Emma, Di, Tabs, Neil and Affy, ‘Nanny Leese’ my stepmum (she’ll like that!) and Dad (I got two – oh yeah), the team at work being all round amazing. lending me houses (see below) and writing the most splendid essays for me (see part 13)! I could go on and now I’ve started I probably should because I know I haven’t listed everyone who’s been fabulous. Sorry – I’ll catch up if I’ve missed you out you amazing people.
Mum took me to West Wittering for the weekend, home to possibly my fave beach in the world – which is lucky as its much nearer than Bali! We went on the 2nd weekend when energy was better and the sun fortuitously started to shine. We needed that 1-1 time, without it being in a hospital waiting room or at the desk of a clinician. And we made the very most of it with beach time, a good walk, good food, expert life planning (Mum is boss at that) and a shit load of giggles. The best of which was over a bowl of veggie risotto in a busy pub and I have no idea why now. Was perfect and much needed for us both as we negotiate this cancery scenario I’ve been ‘gifted’.
That’s my mum that is. Her name is Jenny and she’s not like anyone else’s mum. Seriously. Other people say so too and some even want my mum! I could tell you why but that’s a blog post or two at least.
We got back on Sunday, then on Monday morning Mum accompanied me to an oncology appointment. April 16th exactly 8 weeks since treatment began, we saw Dr Patel, who’s ridiculously expert, professional, warm, funny, fit (triathlons and marathons) AND glam (fuck sake). At this appointment Dr Patel confirmed significant shrinkage. Yeah SHRINKAGE! She didn’t call it shrinkage, obvs, I don’t think that’s a clinical term, but she eyeballed me while pinching Lumpalot between her fingers (indignity and discomfort reign), smiled and said, ‘oh, that’s a lots smaller, a lot’. And the best part was noticing it myself the previous week. In the shower, the spot where I found lumpy on Jan 2nd, I realised I was washing my boobs in a far less tentative manner, so I copped a feel. The joy of feeling the lessening of a gigantic, sore, angry lump was enough to make me have a happy tears moment. On inspection my boob looks far more like itself too. Unless Dr Patel had said it had disappeared entirely, this news could not have been better!
This day of pure joy was followed by 3 days annual leave and a road trip for the #FamousTwo, aka me and KP, to the even hotter, virtually tropical, Isle of White to stay in my very lovely mate and colleague Sarah’s cottage. What a fabulous 3 days we had, traversing all 23x13 miles of that little island as best we could and taking in the beautiful and the bizarre. It really is bizarre in places, having just been left to rot in area’s that were once thriving tourist haunts. There was also opportunity to just sit and read in the gorgeous garden, in hot sun, which I actually had to turn away from due to chemo skin, but boy was that a luxury. And my driver, companion and partner in comedy genius, was ace company, as ever.
That’s KP/Kristy/aka EL Capitan. We’ve been besties for over 30 years and we got ice creams.
Weekend number 3 was fab too if a little quieter, with sun and people and my kids having a good time with their relatively energised mum. Until Sunday afternoon when after a fantastic brunch on the beach with family I had the biggest hit of fatigue I’ve experienced to date rendering me sofa bound and super tearful. My girls haven’t seen me like this yet and rather than freaking out (they’re 14 and 9), they took control. They were nothing less than outstanding, making dinner, folding laundry, tidying the house and my youngest even massaged me having decided herself that’s what I needed. Hard as that is for them, and for me, I still see the positives in them witnessing the reality and rising to it. They made me proud and we managed it.
The lows. Don’t stop reading….I’ll end on a high, I promise. I know there’s only so much emosh some of us can deal with!
Monday 23rd April I took the call my family, my medical team and I have been waiting for. Specifically wanting it ahead of chemo round 4 as it plays in to the next load of drugs. The call was the results of the genetic tests and as you can guess from the ‘low’s’ bit, it wasn’t the news I wanted. Dr De Souza, Genetics Consultant at Guy’s, confirmed I carry the BRCA2 gene mutation. This is the reason I have Triple Negative BC at age 43. I’d like to do the worst swear here but I’ll be respectful as I know some are offended by ‘that’ word. But if ever there were reason to use, it it was after that call.
The immediate implications of this news are about my care now and over the coming months. As well as moving on to paclitaxel (the next chemo drug used specifically for TNBC) I am now also being given carboplatin because of this gene mutation. According to my oncologist, the 2 combined floor people so I am now on a weekly regime with larger doses every 3 weeks and smaller on the weeks inbetween until June 19th. Weekly treatment for 9 weeks so my body has more chance of withstanding the onslaught.
Then there will be surgery. I have a choice; single off and spend the rest of my life watching lefty and waiting for my next mammogram; or a bilateral mastectomy – both off. I will also need my ovaries and fallopian tubes removed as I am at a higher risk of ovarian cancer. I have to get my head around this over the coming 12 weeks or so but I had made my decision before I had my initial appointment at Guy’s weeks ago. I will not spend my life waiting and being afraid. I want to move on from this in the best possible health I can and with the best possible chance. Losing my breasts is going to be vile, I know it. But I need to lose cancer, so they have to go. My head has some work to do now and will have more to do when this is over. Fortunately I will now have a team in London too, who I’ll meet soon – consultant, surgeons, gynaecologist and psychologist – a bumper pack of clinical and psychological support. Thank Buddha for that cos this is going to be a bumpy ride. Pardon the pun.
And then there’s my children, my beautiful girls, and thank god I have had my babies. I can’t begin to imagine this head fuck for women facing the removal of ovaries who want but haven’t had children yet. I just can’t. My heart is very heavy at that thought. But my babies now don’t just have this immediate shitstorm happening to their mum to deal with, they will, when I have every bit of information from the Guy’s team (and only when N is old enough) be told that they have a 50% chance of carrying this motherfucker of a mutant gene too. Rational me is grateful that medical science will have moved on in that time, and that if they do carry it there will be choices and preventative measures to take. Irrational me is heartbroken.
My mum and dad will need to be tested now and once we know who the carrier is siblings and immediate family will need to be tested. The positive is that the more removed from the carrier, the less chance you have of carrying it. That’s all pretty bloody crap too. But knowledge is power. I am the red flag and hopefully no one else will need to go through this.
Speaking of chance, I had a 13% chance of getting Breast Cancer; a 10-15% chance of it being Triple Negative; and a 10% chance of being a BRCA2 carrier. Oh, and I have a very rare blood sub-type – Ro. 2% of regular donors in the UK have this subtype. So I’m rare, unique and currently wish I was anything but. I must hail from ancestors from distant shores as all of these things are more prevalent in Black African and Black Caribbean women. With this nose I’m thinking North Africa meets southern Europe in a hot, passionate love affair…or something…anything steamy and romantic to take my mind of this BS!
Anyway, it is what it is. New fave phrase because there’s not much else to say. Just more work, lots of information gathering and sharing, lots of prep for the future, and for my girls, and more leaning on the people – my people – to get me through.
Among my people is my amazing cousin Zoe. This Saturday, April 28th, Zoe is cutting her divine blond locks to donate to the Little Princess Trust, who provide human hair wigs for children and young people who have lost their hair through cancer treatment and other illnesses. She is then shaving her head as a fundraiser primarily for my girls, so that I can do something special for them when this is over. Zoe will be supporting 2 families going through the shittest of times and I massively salute her. I feel very very grateful that I will be able to do something special for my girls when this is done. They so deserve it.
If you can donate – anything – we’d all be so grateful and I really want Zoe to feel supported in doing something so selfless. Link (which features a pic of me with all my own hair!) and pic of luscious-locks Zoe below. We’ll be sharing pics of the big chop/shave on social and in next weeks blog! Thank you in anticipation! X