This week’s guest blog is a brilliant blog about the way in which we compare ourselves to others. It’s written by a clinical psychologist with personal experience of breast cancer and it’s a must read for everyone with cancer. At least… One of the things …
This article is based on a talk delivered by Dr. Colette Hirsch in conjunction with Keeping Abreast in October 2020. Dr Colette Hirsch is a Reader in Cognitive Clinical Psychology at King’s College London and a Consultant Clinical Psychologist at the Centre for Anxiety Disorders …
Whilst 2020 has been a terrible year for everyone thanks to COVID-19, cancer has continued impact the lives of so many people. Which means that it’s been more important that ever to provide support and advice for those going through breast cancer treatment and those who are finishing treatment and moving forward. And thanks to all my amazing contributors, over the course of 2020 tickingoffbreastcancer.com has shared a lot of valuable advice, support and encouragement for those impacted by breast cancer. In case you missed any of it, here is a recap…
Let’s start with the impact of COVID-19 upon the lives of people going through cancer treatment: Joh wrote an excellent comparison of the parallels between cancer and coronavirus; Miranda wrote a great blog about the impact of lockdown on living with secondary breast cancer and Abigail wrote one about accessing treatment during the lockdown. Sadly, Abigail died in October. Abigail was a great supporter of and participant of the tickingoffbreastcancer.com community and I was devastated to learn of her death. My thoughts and love go to her parents and her sister.
I absolutely love collaborating with people within the cancer community. And some of my favourite people are the team behind Ancora.ai. We spent quite a few weeks planning and putting together content for a focus week on patient access to clinical trials. Thanks to Ancora’s expert knowledge, there is now a huge amount of helpful information up on tickingoffbreastcancer.com about clinical trials and accessing clinical trials. This includes:
Secondary breast cancer
Back in September, I decided to bite the bullet and deal with a difficult topic: secondary breast cancer. I wanted to raise awareness for people who’ve had primary breast cancer, about the signs and symptoms of secondary breast cancer and generally bring them some information about life with secondary breast cancer. After a shout-out on social media I was inundated with offers to write content and get involved. This led to an amazing week of content from so many amazing women.
Liz and Leanne helped me put together the basic introduction to secondary breast cancer for women who have, or have had primary breast cancer and a list of suggested questions for primary breast cancer patients to ask your oncologist. Ancora kindly got involved with the focus week and provided some excellent advice on finding trials for secondary breast cancer. And with some research and tips from the social media community, I created a list of support resources for anyone diagnosed with secondary breast cancer.
However, the highlights of the week were the amazing personal accounts of those who’ve been diagnosed with, and who are living with, secondary breast cancer:
- Nic wrote about the point at which she was diagnosed;
- Flori told us about life with regular treatment and the “I can” mentality that she’s had to develop;
- Clare, a CBT therapist, wrote about how she’s used CBT in relation to her own secondary breast cancer diagnosis and she gave some simple helpful tips to incorporate into daily life;
- Miranda shared four key issues relating to life with secondary breast cancer – identity, honesty, reframe and not rushing;
- Kate wrote about being diagnosed with secondary breast cancer; and
- Jo Taylor of ABC Diagnosis participated in a Q&A about living with secondary cancer whilst also being an incredibly focused patient advocate.
In addition to posting all of this fantastic content on the website, I also did a a few live sessions on Instagram talking about the support and resources available for people diagnosed with secondary breast breast cancer. This included a Q&A with Lisa, the amazing founder of Make Seconds Count; a live chat about the importance of raising awareness of this topic, and chatting to Nic and Laura (aka the Secondary Sisters) about living with secondary breast cancer in their thirties. You can view these over on IGTV on Instagram.
Being diagnosed with breast cancer
I’ve posted a few personal accounts about the point of diagnosis. Abigail wrote about being diagnosed with breast cancer whilst still breast feeding. Kendra wrote about how she and her sister were diagnosed with different types of cancer within 24 hours of each other and the impact of this on their family. Hannah wrote about being diagnosed at the age of 25 while her friends were getting engaged, married and having babies.
Going through treatment
This year I’ve posted plenty of guest blogs about going through breast cancer treatment. Jenny in Australia wrote about going through breast cancer as she reached her one year anniversary. Jo wrote about going through treatment and the impact that it had on her family and marriage. Harriet wrote about how writing became a therapy for her during/after her treatment. Sarah wrote about how cancer had a positive impact on her friendships. Jackie wrote about how exercise helped her through treatment. And I was delighted to post an article from one of the wonderful Breast Cancer Now clinical nurses on how the Breast Cancer Now helpline can help people going through breast cancer.
Navigating life after treatment has been a popular topic for guest bloggers and readers alike. These wonderful personal accounts have included: Emma’s blog about coping with that difficult point between finishing treatment and trying to regain some normality in life; Joh’s blog on dealing with the cancer aftershock; Anne’s account of coming to terms with what she went through; Lisa’s blog about developing PTSD following her diagnosis; and Tina’s blog post about rebuilding her life after breast cancer.
Alongside posting personal accounts on life after treatment, I’ve been delighted to post expert advice on dealing with this part of recovery. To start with, the wonderful cancer confidence coach, Allie Morgan, started her series of blog posts for us with 1) a blog on how to rebuild your confidence after cancer and 2) a blog about how to talk to people about having cancer.(There’s more to come from Allie next year). And I was so pleased to post Jo Evans’ expert blog on dealing with the impact of breast cancer on your sex life. This topic is always difficult to address, so it’s been great to be able to share such an informative guest blog. Alongside this, Lisa shared her personal account of how breast cancer impacted her libido and how she deal with this.
Male breast cancer
Reminding us that men get breast cancer too, Rod wrote a fantastic guest blog about what it’s like to be a man going through breast cancer.
Food and nutrition articles are always really popular and this year I was delighted that Ryan Rylie of the Life Kitchen shared one of his fabulous recipes from his new book: cauliflower korma. I always enjoy working with the fantastic Jane Clarke and her team at Nourish – Jane kindly shared her expert advice for eating during chemo. Then, later in the year Victoria Nelson, a registered dietician, wrote a guest blog giving her expert evidence-based nutrition advice concerning some of the well known breast cancer diet myths like can you eat soya? what about dairy? And more.
Why people do what they do within the cancer community
One of the things that I really like about running this website is the opportunity to meet people who devote a significant amount of their time to helping people with cancer. These are the people who volunteer, retrain in a new career, start businesses, set up charities and non-profits and raise awareness. I’m always really happy to share guest blogs from these people and this year I’ve posted a number of such blogs: the wonderful Charlotte wrote about setting up Drain Dollies (those fabulous little bags for carrying around you post-surgery drains). As parents of little children, Nic and Jen set up the amazing Little C Club this year and they wrote a blog post all about why they did this. Claire wrote about why she came to be a cancer counsellor and the sorts of things she does for cancer patients. Emma, who was only diagnosed with breast cancer last December, set up Pink Parcels, delivering goody boxes to cancer patients at her hospital and she wrote all about why she did this and how it helps her fellow cancer patients. The fabulous Helen Addis (aka the Titty Gritty) participated in a Q&A about why raising awareness with her change and check campaign is so important to her. Emma wrote about why raising awareness is so important to her following her own run-in with breast cancer. And Lee shared her story about setting up tooktake, a labelling system to help patients remember to take their medication.
Research projects and studies
Along with connecting with people who’ve had breast cancer, charities, support resources and experts in their fields, I often hear from people who are working on research studies and projects about breast cancer and who’d like to share their projects on tickingoffbreastcancer.com. An example of this is Laura, who is doing a clinical psychology doctorate at Kings College London, who wrote a guest blog about research into anxiety and resilience after breast cancer and her work on the Frame Project with Dr Collette Hirsch.
Lymphoedema is a common side effect of breast cancer treatment and we’ve been lucky enough to have a guest blog from renowned experts about the causes and possible treatments: Oxford Lymphoedema Practice.
Support groups and resources
I’m always really pleased to share guest blogs from support groups and resources about how they can help breast cancer patients. This year I’ve shared posts from the brilliant Wigwam cancer support organisation and from the fabulous OWise App about the great work that they both do.
For friends and family
Tickingoffbreastcancer.com is not only for cancer patients, it’s also for friends and family who want to help. Two specific guest blogs for friends and family that I’ve posted this year are: 1) what not to say to a cancer patient by Laura, and 2) tips for people for when their colleague returns to work after cancer by Rach.
Huge thanks go to everyone who has got involved with tickingoffbreastcancer.com this year. Thanks to the people who’ve shared their personal accounts. Thanks to all the experts who’ve written guest blogs giving brilliant tips – these have all been really well received and provided valuable advice. Thanks to all the researchers, charities and support resources who have written blog posts about their support services and directing patients to places where they can access important support. And thanks to everyone who has supported my guest bloggers by reading, commenting and getting involved in the conversations and for generally supporting the website. There’s a lot more to come in 2021…
This is another brilliant blog in our series from Confidence Coach, Allie Morgan (see here for her first guest blog: How to Rebuild Your Confidence After Cancer). Allie is a Confidence Coach, working with cancer survivors and those with chronic illnesses. After overcoming bone cancer …
This is a great blog post from the brilliant Laura giving friends, family, colleagues and acquaintances some excellent advice on what NOT to say to someone with breast cancer.
“So you get a free boob job?…”
Until you have heard the words “you’ve got cancer” you have NO IDEA how it feels. It’s only after you go through the experience that you understand what you need people to say, and how you need them to react. And people will disappoint you, they will hurt your feelings without intending to do so.
It’s not that they don’t want to help, or offer sympathy or try and comfort you, but it’s not easy to find the right thing to say. Cancer scares people, it’s the elephant in the room, it makes people uncomfortable that they don’t know what to say, which inevitably means they end up saying the wrong thing.
So after hearing it all, I thought it might be useful to share what to maybe NOT say, and I apologise in advance if this comes off a little bit “ranty” please don’t take it personally if you yourself have uttered these words, you weren’t to know. And before all of this, I probably would have said the wrong thing as well.
“Well you don’t look sick, you look great”
I know this is intended as a compliment… but every time someone said it to me, it made me feel really uncomfortable. It’s almost like they are saying “are you sure cancer is as bad as it sounds, because you don’t look too rough” it’s worth remembering that you can feel awful, even if you look healthy. I felt I had to point out that wearing my make up and a wig, yes, I probably look ok. For a stranger who walked past me in the street, you probably wouldn’t be able to tell I was battling cancer. But for me, I looked ill, and without all the warpaint, I actually looked pretty shocking. Bald, bloated from steroids, grey skin and no eyelashes is not a good look on ANYONE.
“You’re one of the lucky ones”
This one really annoyed me. NO ONE who gets cancer is bloody LUCKY. Yes I was diagnosed early enough to treat my cancer, and I know in the grand scheme of things, there will be many others who are worse off than you, people who are losing or have lost their own battles, but while we might still be alive, we most certainly aren’t lucky.
“It’s just hair”
If it is “just hair” they why do we, as women, spend hundreds… no, thousands of pounds over the years on making it look as fantastic as it can possibly be. Extensions, colours, cuts, special shampoos, treatments, straighteners, curlers, the list goes on. Your hair is one of the first things people notice about you, and is part of a persons identity, so try not to belittle the loss of it by saying “oh but it’s only hair” because it really isn’t.
“At least you get new boobs!”
I know you’re trying to put a positive spin on the situation, but just no. I would rather have my old set back, just as they were before (minus cancerous tumours, obviously), thank you very much. Having a “boob job”, where they put an implant behind your breast tissue, is not the same as having to have your entire breast, including your nipple, skin and all breast tissue surgically removed to treat cancer, and then a reconstruction where they have to rebuild that breast from scratch using chunks of tissue and skin from other parts of your body. As a side note…. try and avoid complaining about your own boobs to someone who has just lost theirs, doesn’t matter how much like spaniels ears you think they look, if you have two healthy boobs with nipples, you’re not doing too badly. I would give ANYTHING to have my old, imperfect boobs back.
“Have you tried…?”
Juicing, jogging, yoga, meditation, fruit cleanses, turmeric, cutting out sugar, XYZ vitamins, cutting out pork, going vegan, alkaline diets, alternative therapies… etc etc. Don’t offer unsolicited advice, particularly diet tips, if we want your help we will ask. Also, for those of us who were already very healthy in all of the above before getting diagnosed, it kind of feels like you’re saying “is it your fault because you refuse to cut out bacon?” or basically “you clearly weren’t trying hard enough to not get cancer”
“Oh I’m so sorry, I lost my *** to breast cancer”
“If anyone can beat this, you can”
Because people who die of cancer obviously just weren’t trying hard enough?
“Why don’t you start a new hobby while you’re off work?”
Hmm… well I’m off work because cancer treatment is my new full time job… when is it you think I should I start learning Italian? When my head is hanging in the toilet bowl as the post chemo nausea hits? When my mouth ulcers are so bad I can hardly move my lips? Or when I’m struggling to remember how to string a sentence together in English because the chemo brain fog is so bad?
“Don’t worry, you will be fine”
I personally didn’t mind this one too much, but I think you might be on sketchy ground and I know others don’t like it…. You don’t know we will be fine, neither do we. A cancer diagnosis brings with it lots of unpleasant surprises, being hopeful and optimistic is great but don’t be too flippant about it.
There is nothing like the big C to show you who your real friends are, and there have definitely been some people that have surprised me. It’s hard to know what to say, but say SOMETHING rather than nothing, because the silence can be deafening, and left too long, it can ruin your friendship. My advice would be, don’t focus on the cancer. They are still the person you love so focus on that, and treat them normally. It’s about them, not about you, or how uncomfortable you feel with the situation.
So, now I’ve got that off my chest… what SHOULD you say?!
Simply letting us know you care with a “I don’t know what to say but I love you” or showing support with a “I’ll always be here for you, we will get through this together” are the best thing you can do.
My friends were amazing telling me “you’ve got this” and “we’re so proud of you” and making me feel so supported every step of the way. They sent me care packages after surgery, through chemotherapy and radiotherapy which made me feel so special and cared for.
Asking us “How are you really doing” and being prepared for the answer to possibly make you feel a little bit uncomfortable when you realise just how crappy we are feeling!
Offer specific help – preparing meals, take them for lunch, meet for a walk, lifts to and from the hospital, anything that will make their life easier. A simple “please let me know if I can do anything to help” is lovely but you can pretty much guarantee we will never want to put you out by saying “actually yes, would you mind filling my freezer with meals, pick up Frank from nursery on Thursday and run me up to my appointment on Friday” but offering to do specific things will make us feel less guilty about accepting the help.
Moral of the story – if you don’t have anything positive to say, perhaps don’t say a lot? Just pick up the phone and say “I have no idea what to say to you, but I’m here” and we will love you forever.
For more advice, have a look at the Ticking Off Breast Cancer section for Friends and Family.
The wonderful Lisa has written this guest blog about the impact of breast cancer upon her libido and how she took steps to improve this. I had no idea breast cancer would affect my sex life When I was sitting with the Breast care nurse …
Today, I’m publishing a guest blog from the lovely Abigail who lives in the U.S. and is living with secondary breast cancer. In this blog post, Abigail talks about her original diagnosis which came at a time when her two children were very young and still breastfeeding. She discusses the difficulties associated with an abrupt end to breast feeding and the impact of her diagnosis. You can follow Abigail’s brilliant blog, no half measures, where she writes about living with breast cancer and provides links to a host of useful resources.
Growing up, all of the families we were close to had lots of children. My own family, with six children (I’m the eldest), was actually one of the smaller ones. I saw how all of the moms/women focused their lives on their children, homeschooling and shaping their own lives around their schedules. Except for my mom. Yes, we were homeschooled and yes, she had a schedule to make that work, but she also held a job as a Physical Therapist. My mom showed me, from the beginning of my life how important it is for a mom to not just have a life revolving around her children, but to also ensure that she had her own pursuits as well.
Trying for a child
Fast forward a few years/decades and, after establishing my career and my husband, his, we decided to start trying for a child. Looking back, our struggle with fertility is such a blip, but at the time, it was all consuming. Every waking and sleeping moment was shadowed by my inability to conceive, no matter what we did. And yes, it was my body that wasn’t cooperating, not my husband’s. After interventions and medication we were able to conceive and I was able to carry our two boys to full term. Both were born healthy, although the births were not ideal, just like their conception. We learned to roll with it, to look forward and not backwards.
One of the things that carried me through the struggle with infertility, which included both the physical struggles and adjustments as well as the emotional struggle to feel whole when a vital part of my biology wasn’t working properly, was that I had a successful career built already. Yes, it wasn’t easy to fit the doctor’s appointments and injections into a busy litigation practice and running my law firm, but I was at a place where I could do that. I’d worked hard to build up the ability to make those adjustments and to flex my work around my life. I could escape to work and engage on an intellectual level and push the struggles to the back. It helped.
Another thing that helped me cope with infertility and how I viewed my body was breastfeeding. I didn’t struggle with breastfeeding. My boys both latched on right away and I was blessed to have sufficient milk to grow some major rolls that just begged to be squished on my boys. We discovered the joy of cuddling and nursing to sleep and co-sleeping and, while sleep wasn’t in plentiful supply, we made it all work. So much so that I was still pumping and breastfeeding on demand in 2017 when my boys were about to be four (4) and (2). We were a triad since both of my boys loved to nurse and it represented a big part of our bond.
I’m glad I captured some pictures of that interlude. In the moment, it felt like each day dragged on for 28+ hours; in highlight, it was also a blip.
It was in early March of 2017 that I was diagnosed with breast cancer and I had to abruptly wean both of my boys with very minimal notice in the middle of attempting to assimilate this concept of having breast cancer. We needed the milk to be out of my breasts so that the MRI could get better pictures than the mammogram of the tumors in my left breast. On a clinical level, it is just that simple.
In actual practice, it was much worse.
First of all, the instructions I was given to dry up my milk were woefully inadequate. Only two steps and I was told that my milk would be dried up in approximately forty-eight (48) hours. Since I’d been nursing and pumping for four (4) years straight, I had a feeling it wouldn’t be that easy. It took me the entire two weeks till the MRI was scheduled to dry up my milk and I sent back a 4 page document to my breast surgeon’s office to share with other women still breastfeeding to help them dry up their milk in the future while avoiding mastitis or other ramifications. That was just the physical part.
Secondly, setting aside the physical symptoms of stopping my milk flow, there were serious emotional ramifications. My three (3) almost four (4) year old son was amenable to weaning. We’d already discussed that he would wean as of his 4th birthday and it wasn’t that far away when I learned of my diagnosis on March 8, 2017. My one (1), almost two (2) year old, was a completely different story. My husband took over bedtime with him since he was used to nursing to sleep and we all had to endure listening to him wailing in the other room for at least a week because he didn’t want to go to sleep without nursing. Even after that week, he still struggled at bed time and so did I. I can’t adequately explain how awful it was to listen to my son wailing for something I could give him and yet I had to deprive him. It took every ounce of will I had to remain away from him and not rip off the tight binding that was helping my breasts learn not to produce milk and nurse him to sleep. Every ounce.
Third, I had to learn how to parent without breastfeeding. I’d learned in the four (4) years I’d been a mom that nothing calmed my boys like nursing. Literally everything could be made better by helping them to latch on and snuggle for a bit. Not being able to use that method of connection required a lot of reassessment and adjustments. Again, it feels like a blip looking back, but in the moment, it felt insurmountable in the midst of learning the new language of breast cancer.
It was stage IV cancer
After we got past the hurdle of weaning and adjusting to an early stage breast cancer diagnosis, we found out in June of 2020 that I’d actually been Stage IV from the beginning. The limp I hadn’t complained about because there was just too many things on my mind turned out to be caused by a 5cm tumor in the middle of my right femur. I was rushed into surgery to put titanium rods inside my femurs during chemo and I had to turn over more of my responsibilities around the house to others.
In hindsight, while the delayed diagnosis was frustrating and it caused so much upheaval as I adjusted twice, I am thankful that it gave me the time to wean my boys and begin adjusting to a different kind of parenting before I was immersed in more surgeries and adjusting to a terminal diagnosis. My first thought at the time of diagnosis at Stage II and the information that I’d been Stage IV from the beginning was that I wanted to spend more time with my boys. That career I’d built, I had to give that up, but the fact that I’d spent so much time building it up meant that we had the assets and the insurance to ensure that I don’t have to work and I can spend the time I have with my boys.
Looking back and looking forward
Looking back, we see everything more clearly. Looking back, I can see that the those blips that were so consuming at the time, that seem less consequential looking back, those blips were real life with my kiddos. They may not remember all of the details of how we connected and how we built our relationship, but I know they feel it. When we talk about how they are doing and what they are thinking about, I can see the benefits of building that foundation with them. And we keep on looking forward and adjusting to all the new hurdles that living with MBC (a/k/a secondary breast cancer) brings.
This is a guest blog from Victoria Nelson, Registered Dietitian in London. Victoria offers expert evidence-based nutrition advice that is tailored to you, to help you achieve your lifestyle goals. Her specialities are cancer and gastrointestinal issues. She says, “My passion is dispelling common nutrition …
Cauliflower korma: a recipe from the Life Kitchen book by Ryan Riley.
I love the aromatic sweetness of this curry. You can balance the flavours as you wish: if you really crave heat, add another chilli; if you don’t, remove the chillies altogether. As it is, this recipe gives a little warmth, but not too much spice. Serve it with a classic mango chutney or the Green Chutney on page 134.
3 tbsp unsweetened desiccated coconut
3 tbsp ground almonds
4 tsp garam masala
6 tbsp olive oil
1 whole cauliflower
6 garlic cloves, crushed, or 3 tsp garlic paste
1 large onion, chopped
2 tsp ginger paste, or 4cm piece of ginger root, peeled and grated
1 red chilli, roughly chopped
1 green chilli, roughly chopped
a large pinch of salt, plus extra to season
1 tsp ground coriander
1 tsp ground turmeric
1 tsp ground cumin
¼ tsp white pepper
¼ tsp grated nutmeg
2 tbsp maple syrup
1 x 400g tin of full-fat coconut milk
½ vegetable stock cube or pot
400g spinach leaves
1 lemon, zest and juice
freshly ground black pepper
TO SERVE (OPTIONAL)
a handful of flaked almonds
a few coriander leaves
a handful of pomegranate seeds
Heat the oven to 220°C.
Place the desiccated coconut and ground almonds on a baking tray and roast for
5–6 minutes, until toasted. Remove and set aside.
Mix 3 teaspoons of the garam masala with 2 tablespoons of the olive oil. Season well and use to coat the cauliflower. Place the cauliflower on a baking tray and roast on the middle shelf of the oven for 30 minutes, until dark brown.
While the cauliflower is cooking, put the garlic, onion, ginger, chillies and the large pinch of salt in a food processor or blender and pulse to a rough paste. (Alternatively, put the ingredients in a bowl and use a hand-held stick blender.)
Place a saucepan on a medium heat and add the remaining olive oil. When hot, add the paste and cook for 4–6 minutes, stirring to make sure it doesn’t catch or burn. Put a lid on the pan (or use foil if you don’t have a lid) and simmer for 5–10 minutes to allow the aromas and flavours to intensify.
Combine the spices, then add them to the pan and stir. Cook, uncovered, for a few minutes, then add a dash of water.
Add the maple syrup, coconut milk, stock cube or pot, spinach leaves, lemon zest and juice and toasted coconut and almonds, then simmer on a high heat until the spinach wilts. You can serve the korma like this if you prefer, but I like to tip the whole lot into a food processor (or use a hand-held stick blender) and blend everything to a beautiful, green sauce.
When the cauliflower is ready, break it into florets and divide it between individual serving bowls. Spoon over the sauce and top with a sprinkling of almond flakes, coriander leaves and pomegranate seeds, if you like.
Life Kitchen by Ryan Riley (Bloomsbury Publishing, £22) is out now. Photography by Clare Winfield.