Ciao, bella
On my least fun year, but with resources & links
This is a post that I hope you, and no-one you know, needs to read. It certainly isn’t one that I thought I’d write.
Consultant: ‘I’m afraid it’s breast cancer.’
Me: ‘But - but - I eat SO MANY blueberries! Wtf?’
Two good things came out of the shitshow that was last year. One was my beautiful, squashy and all-round marvellous baby, Mia, who was born two weeks after my diagnosis. The other was that I did a lot of reading, received a lot of helpful advice and made significant lifestyle changes which I’m certain helped through the various treatments. I figured - even with an altered figure - that collating the lot into a list of top links & resources might help readers in a similar boat.
NOTE: you won’t find any juice diets / chia seeds / meditation cured my cancer stuff. I did and took everything the NHS doctors advised. Not that I had much of an option, with two retired GPs for parents. I mean can you imagine the looks of disbelief?! They didn’t leave copies of the BMJ on the breakfast table for nothing. Even if I did routinely shriek with horror and turn over the covers with close-up photographs of dermatological conditions - enough to put anyone off their Weetabix.
Diagnosis
Here goes! So four or so months into my second pregnancy, I had some breast pain, just on the one side. It hadn’t happened when I was pregnant with Alba, and I ignored it - I was busy, and will avoid going to a doctor if they aren’t my parents because, spoilt. (In the past, if I needed a blood test, one of my parents routinely did it while I was half-awake, helpfully handing over a cup of tea afterwards. Top service.)
I finally did mention it to my mum - she suggested I ask my obstetrician for an opinion. I didn’t. Instead, I handed in the first draft of The Green Cookbook, we went on holiday, and I ignored the pain.
At 6 months, I wrote to my obstetrician. GO TO YOUR GP, she said. PS, love to Alba!’* So I asked Mum to check. (This might horrify anyone who doesn’t have a doctor for a mother, and probably sound completely normal to everyone who does. GP mums are great both for contraceptive advice when you’re younger, and dealing with snuffly grandchildren when you’re older - highly recommend at both stages.) Anyway, Mum asked me to go to my actual GP, at which point I made an appointment.
The GP was reassuring. I described the dull rather than sharp pain, and said that a portion of the breast felt different compared to the other. If the good breast was a marshmallow - a posh one, like you get from the Marshmallowist (is it weird to link there in an essay like this? They are amazing marshmallows, so I have) then the suspect one felt like a bag of demerara sugar. Granular. But there were no lumps, and no visible difference in appearance or any other textbook symptoms. The GP had a look, and agreed that breast pain and a change in texture were normal for pregnancy. But. She was going to refer me to a consultant. Just to put my mind at rest.
The consultant was brisk, and reassuring. (Also, as I found out later, basically an artist as a surgeon.) On examination, she agreed with the GP that changes in breast texture were normal in pregnancy, and that breast pain was rarely a sign of breast cancer. But. She was going to refer me for an ultrasound. Just to put my mind at rest.
The ultrasound was quick. This doesn’t look like anything, said the radiologist. But I’m going to do a biopsy just in case. You won’t hear for at least a couple of weeks - I’m not going to put it in as urgent. It’s just to put your mind at rest.
My girlfriends were reassuring - if it was serious, they’d surely do things more quickly. I was cheered. My mind was already at rest! And the following week, Tim and I got married. The week after that, it was Christmas, then I turned 39. By mid-January, I was two weeks from my elective c-section, over 8 months pregnant, and hadn’t heard back from the hospital. Finally, I phoned. A very kind woman in the ultrasound dept answered, and hesitated.
‘It says’, she said ‘further tests after the birth.’
‘I’m sorry what?’
‘Now if I just look, one moment - can you come to the hospital this morning to see the consultant? In the next hour?’
It is not good if a receptionist asks you to come to the hospital within the hour.
I sobbed uncontrollably in the shower before leaving, thinking of Alba, thinking of the baby I hadn’t yet had, trying to come to terms with the idea that just when I had everything I could possibly have wanted - a loving husband, almost two children, a beautiful house** - that within the hour, I would go into a doctor’s office and hear - what? A terminal diagnosis? How could I be about to die when I was just about to give birth?! LIKE WHAT THE ACTUAL FUCK?!!
Dad offered to come with me to the hospital. My parents had come the night before, to celebrate my birthday. Some celebration, etc etc.
Anyway. The diagnosis was not terminal. DCIS, I was told. Ductal carcinoma in situ. There was a diagram, and this was a type of carcinoma contained in the milk ducts. Early early stage, which was good. Estrogen positive, though, and because of a pregnancy (when estrogen production goes through the roof) it was fast growing. And this was bad. But it was treatable, and that was good! While I dressed behind the curtain, the consultant and my dad exchanged quick, professional words. Mastectomy - immediate reconstruction - something, something, further tests, something.
Except there was nothing immediate, and it wasn’t ‘just’ DCIS. There were further scans, and inconclusive biopsies (doctor code for ‘despite using a horse needle, they stuck it into the wrong bit’). One of the not-bodged biopsies showed that the cancer had spread into the outer tube of the milk ducts. But still very early stage! There were painful mammograms to pinpoint - literally, multiple needles were stuck in during a mammogram - where exactly the cancer was in the breast, in order to give the options for surgery. I had, by this point, already agreed to a mastectomy with an implant reconstruction. There were various dramas over the surgery date, I was reassured that there was no rush, and finally, the op. Or, more accurately, the chop.
But when the mother of all tests were run on the removed breast, it hadn’t ever been early stage. They found multifocal invasive cancer, and it was Stage 2. And none of had been picked up on any of the scans or hilariously non-urgent biopsies. To top it off, a call from my least favourite Macmillan nurse:
‘As it’s SO invasive, you’re having a full CT and bone scan! To see if it’s spread!’
Those were her actual words. Perhaps the only reason it turned out to be good news (it hadn’t spread to lymph nodes, bones or wherever godawful place it can spread to) was because she hadn’t used the curse words - ‘just in case’ or ‘it’s probably nothing!’. Maybe it’s better if they tell you it’s going to be terrible news, and it’s a nice surprise when it’s not.
Pregnant, and screwed
I can barely bring myself to write about what happened feeding Mia, because it still hurts. I now can’t remember who said write from the scar, not the wound - I’m afraid this is somewhere in-between.
I wouldn’t have put myself down as a militant proponent of breastfeeding. It enrages me that women are made to feel awful if they find it difficult to feed, when frankly if you’ve just given birth you deserve a standing ovation, not some lunatic making you feel like a failure for using formula. I was lucky with both girls; Alba took to breastfeeding immediately, but it was with relief that I topped her up with formula after her first 10-hour non-stop cluster feed. (Yes, I did think I would lose my mind.*) Mia fed straightaway too - after I carefully checked with both my obstetrics team and oncologist that it would be safe to feed from the ‘good’ side. And I loved feeding her - my best memory of that entire time was the two nights we spent in the hospital after her blissful c-section, curled together in the astonishingly comfortable hospital bed in a darkened room, the kindest of midwives popping in to check on us through the night. Tim was dispatched home, because I just wanted Mia to myself.
But then I was told one week later - by the same oncology team who said it was fine to start breastfeeding - that I needed to stop. The whole multi-disciplinary team agreed that I needed to stop. An MRI scan was imminent, to double check the ‘good’ side, and a lactating breast would mess up the result.
My milk had just come in. Mia was feeding beautifully - I couldn’t agree to stop feeding her - how could they even ask me to? They didn’t even need to do an MRI. The ‘good’ breast was fine on all the scans. The expensive second opinion consultant agreed the ‘good’ breast was fine. But pretty much everyone I know came down on the side that it was better to follow medical advice. Better for the baby for me to be around, rather than insist on breastfeeding and mess up an important test result.
So I stopped. I had this tiny, perfect newborn, I loved her so much, and it physically and psychologically hurt not to feed her. And unconsciously, I withdrew - to the point where I barely held her for her first two months. It was just too hard to be around her.
And then, after the pain of not feeding her, the numbness of avoiding her, the jarring awfulness of the whole thing, I was told that the MRI scan wouldn’t be done for a further 5 months. I could have fed her for six months, and didn’t, I could have carried on bonding with her for that entire first two months, and didn’t. All because the multi-disciplinary group in charge of my care ‘all agreed’ that I should stop breastfeeding, because the date of an MRI scan meant nothing to them, and everything to me. It felt, and still feels like a punch in the chest when I think about it. So I try not to think about it.
Now the important bit:
Recommendations and links
When I asked my Macmillan nurse (a nice one, not the completely insensitive one) about lowering the risk of breast cancer recurrence, it was a very vague ‘oh, what you do already, good diet and exercise’. Similarly, the head of oncology at the very well-known hospital where I had radiotherapy said that exercise was the single most important factor in preventing breast cancer recurrence - but she only mentioned this once I brought the subject up. Why then wasn't the Macmillan nurse handing out a diet sheet, and the oncologist giving out weekly exercise plans? So I did a deeper dive, and found the answers I wanted here:
360 breast cancer advice: Rosamund Dean’s Reconstruction. I have mentioned it before, and it’s a godsend - like a really good friend of yours has gone through the same thing, will never patronise you, and give good, honest, realistic and well-researched information that you can dip into as needed. I bought the Kindle version, which works well for reading on the go/between appointments - you can just click to the relevant bits and not alarm yourself unnecessarily. It is my top rec - obv paperback vg. too.
Diet: Dr Robert Thomas’s Keeping Healthy After Cancer. This is meticulously researched, a little dense in places but you can skim to the relevant bits, and written by an oncologist with an interest in how lifestyle and health interact with cancer and can help through cancer treatment. I have found it enormously helpful.
For an overview, you can listen to Dr Thomas chat with Dr Rupy Aujla about diet and cancer on this podcast
Community: Other than your friends or friends who have gone through cancer treatment, it can help to feel like you aren’t in this alone. These were brilliant:
Future Dreams House offers support to people living with primary and secondary breast cancer and they have a daily schedule of workshops and exercise classes that you can access free online or attend in person if you’re near Kings Cross. I found it reassuring post-diagnosis to think there was a timetable of activities I could tap into that would help my recovery.
Maggie’s Cancer Centres are located at many hospitals through the UK, and provide a beautifully designed, peaceful space where you can access counselling and classes or just sit with a cup of tea and read, or chat informally to Maggie’s volunteer.
Macmillan counselling services are available through the Macmillan Support Office at your hospital - it was awhile before I was told about them, but after a waiting list, I did access the counselling and it has been incredibly helpful. A top if irritating tip - you will be triaged for the severity of your mental state, and it’s a terrible thing to say, but I’m afraid it doesn’t hurt to appear more in need than you are, because if you appear to be coping well, you’re at the bottom of the list. I appeared to be coping well on the triage and didn’t hear back for months, and it was only when I had a complete breakdown (ironically on a mini break to Margate) and called the helpline barely able to speak for crying and saying I could barely look after my children that they fast-tracked an appointment the following week.
Mummy’s Star - a charity with an ingenuous name, but it makes me want to cry (again!) because it was set up by a man whose wife was diagnosed with breast cancer 22 weeks into her pregnancy - she received chemotherapy and exemplary care, but died 10 weeks after giving birth, leaving a 3 year old daughter and her newborn. The charity supports women who are diagnosed at any point during their pregnancy or up to their first year after giving birth and are particularly supportive on issues around breastfeeding - I had a lovely caseworker, Sara, who checked in and chatted with me at regular intervals as needed.
Breast Cancer Now have useful, accurate information and a fantastic helpline of trained nurses for any queries you might have - going down a Google search burrow is the worst, there are accurate fact-sheets on every aspect of breast cancer and subsequent care on their website, I was religious about only ever looking for information on it until literally just now, which I regret.
My one-paragraph summary of Rosamund and Dr Robert’s advice is that through a cancer diagnosis and subsequent treatment, it can’t be emphasised enough just how helpful movement (as gentle as frequent walking and light stretching to start with) and eating well (lowering ultra-processed foods and alcohol, upping your fruit, vegetable, nut, seed, bean, lentil and soy intake) can be. Both help through prepping for surgery, through all the types of treatment, and if nothing else, they improve your mood - I am 100% more grumpy when I haven’t left the house and only eaten chips.
In upcoming posts on this topic (totally run out of space here):
Surgery (stuff to take to hospital & recovery)
Tips on kicking off when the NHS waiting list is so long it’ll endanger your life / threatens to leave your kids motherless (pushy. middle. class. elbows.)
Radiotherapy (drink! water, not booze, obv., and moisturise!)
Very briefly chemotherapy (I didn’t have it but have a couple of useful links)
Hormone treatment (early menopause! fun for all the family. there ARE things which will help though.)
*My obstetrician is lovely - we had her and her family over for lunch last year as a thank you. ‘Why are you spending all day making stock for a chicken pie?’ my husband asked. ‘Because she gave us our beautiful girls!’ I said. ‘She deserves a pie that takes two days to make!’ (You know the pie I mean, it’s been on TV. Frankly my thirty minute Quick Roasting Tin pie is better, but I wasn’t to know that before using every pan in the house to make the complicated one.) Did the Sweet Roasting Tin chocolate bread and butter pudding for dessert. Anyway, she’s one of my 5 favourite doctors who aren’t my parents, has a great bedside manner and is incredibly skilled at elective c-sections - message me if you’re planning a central London birth & and want her number.
**In retrospect, it’s funny that career or commercial success didn’t feature in the list of things I cared about in an ‘oh shit, i’m about to die’ list, even though panicking about imminent career failure takes up 60% of my actual living time.
***If you’re giving birth soon and the cluster feeding thing happens, don’t panic, it is normal - I called the National Breastfeeding Helpline (there is one!) at hour 6 and 8 and it was reassuring to talk to a nice lady on the end of the phone both times. But in the end Tim and I decided to open the formula because even I couldn’t watch another hour of a box-set in the same place on the sofa, and it was a VERY GOOD call. She downed the entire thing, even after 10 hours feeding! Outrageous.
This was such a long essay, I hope you’ll forgive there aren’t lots of ‘On the table’ recipe links - but here is the link to this week’s Guardian Feast column, a wonderful orecchiette with blue cheese, broccoli and hazelnuts.
If you have made it all the way to the end of this post - thank you! It apparently helps with Substack’s algorithms & visibility if you click the heart, and this might be a useful one for other women to see - thank you very much in advance! Take care and have a lovely weekend, Mini xx
Lost my mum and two dear friends to breast cancer - this is an incredibly brave - and helpful - piece of writing. I’m 65 and my mum died at 66 and I have my routine mammogram on Wednesday. Thank you for writing this.
Oh Rukmini. What a towering piece this is. Thank you.