My thanks to Jayne, who shared this: "I wanted to let you and your readers know that for women who are interested in Scalp Cooling Therapy (much is no longer done with a cap) but don’t have the money, there are funds available from hairtostay.org. This is a wonderful organization."
Those are such important messages. However I have nursed several beloved friends and my husband in the US, albeit with excellent health insurance, and they would probably agree with, any of these comments, but I’m a Brit, and I know that the constant battle to get care in the UK is very different. In some area the National health service treatment is on a par with the US, in others it is not. It known as the “post code lottery”.I would love to see some cancer survivors from the UK tell their story. Good as it can be, the treatment that Her Royal Highness is getting is through private care, and probably cannot compare to the average. I wish her well, but would love to think that her level of care was as widely available as it should be.
This is such an important point, Nina. My audience is primarily US based, and these are all US answers. Appreciate you pointing out the differences here.
Oh my gosh Elizabeth, THANK YOU. This is such an important post and will no doubt help so many. And thank you to everyone who shared their stories. I won’t forget them.
I somehow missed your seeking stories and boy do I have so. Many. Thoughts! As someone dx’d at age 32, while pregnant, in 2020 with what’s typically a childhood cancer, just 4 years later my world continues to be rocked. The diagnosis process was exhausting, losing 20 lbs while being first trimester pregnant was scary. Soo much pain around my knee, which we would later learn was bone cancer. Losing my hair was the hardest part. I did several haircuts before deciding to shave it. I used hats the whole time, and even though it was covid and didn’t see many people I definitely felt like *the patient* any place I went, as I had major leg surgery to remove my tumor. I’m thankful that my oldest was just 18 months when I started treatment, and his spirit is indelible, yet he also knew that mama wasn’t feeling good, even before my treatment started. Post treatment, due to complications and more pain, I opted for a form of amputation known as rotationplasty in 2022. It’s the best choice, and yet I literally will never be able to forget or pretend I didn’t have cancer. My body is so significantly different, in a very visible way. My mobility isn’t what it was. I am envious of people who could go for walks during recovery between treatments as that was never an option for me. I still struggle with my lack of ability to be able to move the way I’d like to care for my body, which I know affects my appearance. I put a brave face on most of the time but it can be so hard.
I’ll admit, seeing Kate was startling. She looked so good! And yet, the effort that required, was I’m sure exhausting. I hope she truly felt like *she* was making the decision to be out and there was zero pressure.
As for advice, I was glad to see someone mention ring theory! It was discussed many times during my treatment with my family and close friends. As for what I would tell others who know and love someone going through cancer…. Send them a note. Just a little ‘thinking of you’ can go a long way. Especially when accompanied by ‘I don’t expect you to respond’. I can’t tell you the number of times certain people reached out and all I could do was ‘heart or like’ the message. Also, if you’re giving someone food for any reason…. Don’t do a marinara pasta bake! I know it’s easy and cheap. But sooo many people do it! And the mouth can be so sensitive during treatment! Honestly, gift cards for food places are great. Or non dinner things!
Elizabeth, thanks for hosting this conversation. It’s so important!
Thank you to all who shared their stories! It was so impactful to hear the different perspectives. I have a PhD in cancer biology and one of the things I got to do in my program was shadow the oncologists for a month. It was an incredibly emotional, eye opening experience. I sat in on appointments with someone who was jaundiced and dying from liver failure and also someone who was taking a break from chemo to go mountain climbing. Cancer is ridiculously not fair. I got to listen in as an incredible doctor explained treatment options to a patient newly diagnosed with breast cancer too.
One of the biggest take aways from that experience, and my degree program overall, is that as a general population, we hear cancer and assume it's one disease, when in reality each type of cancer is a separate disease with specific treatments indicated for it. Even within breast cancer, the type of treatment you would receive depends on the hormone receptors that are present in the tumor. There are 3 key ones, and you could have none, 1, 2, or 3 of them, each with a slightly different approach to the drugs you might receive. That doesn't even account for staging and how that might play in to any surgery or radiation plans. It's enormously complex. I don't do cancer research anymore, but I am endlessly grateful to have learned how much creativity, resilience, and passion it takes to continue to forge ahead on the path toward new & better treatments. Thanks, Elizabeth, for creating the space for this conversation. It's so important!!
Kelly, thanks so much for sharing all of this. I will admit, I didn't realize how often, in my mind, I would lump people with the same types of cancer together. When we were in the thick of IVF, I absolutely HATED when people did that to us — ie "I know a person who did this and they had a baby!" — so I'm very glad for this reminder that experiences can vary widely.
I am so incredibly grateful for this post. As I went through cancer and chemo, I was ravenous to read about other people’s experiences and their appearance but I struggled to find first hand reflections. This post is what I was looking for.
When I was diagnosed with Hodgkin’s Lymphoma in June 2020 (yes, right as the world was falling apart), there was a lot of scary stuff to face: having to attend chemo alone because of COVID, isolation because I couldn’t have visitors at home because of COVID, not being able to work even if I felt like it because I worked in a public school and would be exposed to COVID, etc. (Over all, I would just not suggest getting cancer during a pandemic. It stinks 😝). Also because of COVID, my husband and I had just cancelled our big wedding, eloped, and were hoping to try again for a big celebratory wedding the next year. Through all of this, the changes in my physical appearance were the most taxing and long-term side effects, largely because I was planning to have my wedding re-do within the next year. I did not want a single thing about my appearance to change. I wanted to look “normal” for my wedding photos.
That was not realistic for me. During my 8 rounds of chemo, I refused to shave my head. This meant that every time I showered the walls of my shower would be tattooed with clumps and clumps of hair. Imagine all the hair you loose in the shower over a 1 month period… that was what I’d lose in one shower. It was so painful. I would cry every time I showered. I couldn’t pick my hair from the walls and drain, so my precious husband would clean behind me… it was dark.
I never shaved my head, but my hair thinned significantly. When I was finally cleared by my doctors and chemo was over, I pursued natural beaded rows (NBR) extensions. These extensions were life changing. They made me look as normal as possible as my hair regrew underneath my remaining scraggly pre-chemo hair. Getting these extensions was a huge marker in physically becoming “me” again.
The other physical aspect that was difficult was weight gain. I gained about 30 lbs from the steroids and from my fatigue which led to spending days and days in bed. My oval face turned into a fluffy marshmallow. It took much longer to recover this aspect of “me” but about 3 years after my original diagnosis I began walking daily which turned into running daily. Running has been such a gift. Not only has it allowed me to reclaim control over my weight, but it is a hard thing that I CHOOSE to do. Cancer happened to me, and I survived, but running miles and miles and feeling the ache in my legs or feet is my choice. It’s good pain. It’s pain that proves I am strong and alive.
I did not look the same after surviving cancer and completing chemo. However, four years out, now I DO. All that is left are two scars on my neck and chest. I’m proud of those scars now. At the time, they made me cry, reminding me of the terrible, terrible battle I felt like I was loosing most days. Now, I proudly wear tank tops that show those scars because the scars are proof of my strength. I’m proud to have a physical reminder that I have persevered.
Oh, Abbie - thank you so much for sharing this vivid picture of your experience. Wishing I could reach through this screen and give you the biggest hug. Sending love and well wishes. xo
So many thanks to everyone who shared their stories and thoughts. And to you, Elizabeth, for organizing. Everyone sharing how they just wanted to look normal helped me frame my freak out at the dermatologist this week. I had melanoma removed from my arm 2.5 years ago when my daughter was 2 months old. I was lucky - it was caught early. I didn’t have to do chemo or treatments. But I HATE how noticeable the very long and very red scar on my arm is even after all of this time. After months of laser treatment with no real improvement I was in tears this week and feeling ashamed I just wanted my arm to look normal and not have to talk about it, especially with my very boo boo obsessed 2.5 year old. But reading these stories made me realize that is totally normal! It’s ok not to want your body commented on! So thank you everyone for that bit of healing this week.
Christine, I'm so grateful you caught it early and absolutely hear you on the scar thoughts. Any chances, as someone here said, that are not your choice are difficult and you need to feel all the feelings. AND I also read the stories above and reframed a lot of my thinking on my own scars (from skin cancer last year and thyroid removal awhile ago) — I'm so grateful for these women and their willingness to share.
Thank you for gathering and sharing these perspectives Elizabeth… it’s so important to to consider others’ lived experiences and I’m so grateful to have ready these women’s accounts
Thank you so much for sharing these stories, Elizabeth! And thank you to the sharers featured here for imparting their personal experience and wisdom to all of us. So much of the advice here feels universal: (1) don't comment on someone's appearance (particularly inviting comparisons to how they "should" look); and (2) remember that everyone is fighting their own battles.
While I am ***not at all*** comparing my experience to cancer, some of these stories reminded me of when my babies were in the NICU. They were premature and extremely underweight, so I had never grown the expected big belly during my pregnancy, and thus my body "bounced back" (a term I hate) relatively quickly. A few weeks postpartum, I ran into an acquaintance, who exclaimed, "Wow! You don't look like you just had twins!" I know she meant well, but it was crushing. My body and my life, in that moment, didn't "look like" I was a mother at all; after all, I was going back to an empty home while a stranger at the hospital cared for my babies during the night. It was well-intentioned but devastating. It taught me to be much more wary about how I reflect someone's physical appearance back at them.
Hi Rachel, I have heard from a number of people who have said something to the effect of what you are saying here, how the sentiments expressed in these stories make them feel seen in a different, difficult scenario. I think/hope that's where a greater collective empathy comes into play? Grateful for your willingness to share.
Elizabeth, thank you so much for creating a space where we can have a nuanced conversation about this! I was diagnosed last year, at 42, with rectal cancer. My physical appearance remained pretty consistent despite some gnarly treatments and side effects. To be honest, all other things held equal, I had plenty of symptoms I would have gladly traded for hair loss or other changes in my appearance. Rectal cancer is a special burden because to be open about your symptoms, you have to discuss typically taboo topics like rectums, anal sphincters, poop, and blood. I felt especially isolated because people who were perfectly comfortable commenting on my unchanged appearance were often uncomfortable discussing the messy and debilitating changes I was actually experiencing.
Regarding Princess Catherine: So Many Feelings! On one hand, I am so glad a prominent person is publicly complicating the narrative that all of us cancer patients are out here losing our hair and looking permanently peaked. On the other hand, I don't even want to assume she didn't lose her hair! Wigs can look great! I'm glad she shared some context before her appearance, noting that she has good days and bad, which I empathize with. But seeing her also made me realize more deeply than before the limitations of a job that requires you to keep calm and carry on, to be seen and not heard. I long for her to be able use her platform to show more of the multi-dimensionality of cancer, to be able to say, "You never know what someone is going through. Yes, I look great, but also I'm in a great deal of pain/depressed about my mortality/pooping blood." (Definitely projecting on that last one, ha!) Yet I know she can't set this example, because it directly contradicts the "never complain, never explain" culture of the monarchy.
Wow this is such an impactful post. These stories really bring to life how diverse and difficult life with cancer can be. I admit my first reaction on seeing Kate was about her hair, when it should of course been about what it took for her to be there and what it meant to her family she was there. We never know what others are going through and these stories are such powerful reminders of that. Thank you for collecting them and thank you to those who shared.
Such powerful stories here! Thank you sincerely to all who shared their stories and to Elizabeth for giving them the platform. I learned a great deal from these strong women.
Wow, so many of these stories and responses are so powerful. Thank you Elizabeth for letting these brave women share their stories. My prayers go out to anyone affected or touched by cancer. ❤️
Thank you, Elizabeth, for (as always) putting out valuable and thoughtful content to educate us and make us think. And thank you to all who chose to share their stories. I have immense gratitude for your kindness in retelling your experience and sharing your thoughts so I/we can all learn and be/do better. Wishing all health!
My thanks to Jayne, who shared this: "I wanted to let you and your readers know that for women who are interested in Scalp Cooling Therapy (much is no longer done with a cap) but don’t have the money, there are funds available from hairtostay.org. This is a wonderful organization."
Those are such important messages. However I have nursed several beloved friends and my husband in the US, albeit with excellent health insurance, and they would probably agree with, any of these comments, but I’m a Brit, and I know that the constant battle to get care in the UK is very different. In some area the National health service treatment is on a par with the US, in others it is not. It known as the “post code lottery”.I would love to see some cancer survivors from the UK tell their story. Good as it can be, the treatment that Her Royal Highness is getting is through private care, and probably cannot compare to the average. I wish her well, but would love to think that her level of care was as widely available as it should be.
This is such an important point, Nina. My audience is primarily US based, and these are all US answers. Appreciate you pointing out the differences here.
Oh this is such a good point!
Oh my gosh Elizabeth, THANK YOU. This is such an important post and will no doubt help so many. And thank you to everyone who shared their stories. I won’t forget them.
Truly so grateful to everyone who shared, I have been sitting with these stories all week and feel so changed by reading them. <3
I somehow missed your seeking stories and boy do I have so. Many. Thoughts! As someone dx’d at age 32, while pregnant, in 2020 with what’s typically a childhood cancer, just 4 years later my world continues to be rocked. The diagnosis process was exhausting, losing 20 lbs while being first trimester pregnant was scary. Soo much pain around my knee, which we would later learn was bone cancer. Losing my hair was the hardest part. I did several haircuts before deciding to shave it. I used hats the whole time, and even though it was covid and didn’t see many people I definitely felt like *the patient* any place I went, as I had major leg surgery to remove my tumor. I’m thankful that my oldest was just 18 months when I started treatment, and his spirit is indelible, yet he also knew that mama wasn’t feeling good, even before my treatment started. Post treatment, due to complications and more pain, I opted for a form of amputation known as rotationplasty in 2022. It’s the best choice, and yet I literally will never be able to forget or pretend I didn’t have cancer. My body is so significantly different, in a very visible way. My mobility isn’t what it was. I am envious of people who could go for walks during recovery between treatments as that was never an option for me. I still struggle with my lack of ability to be able to move the way I’d like to care for my body, which I know affects my appearance. I put a brave face on most of the time but it can be so hard.
I’ll admit, seeing Kate was startling. She looked so good! And yet, the effort that required, was I’m sure exhausting. I hope she truly felt like *she* was making the decision to be out and there was zero pressure.
As for advice, I was glad to see someone mention ring theory! It was discussed many times during my treatment with my family and close friends. As for what I would tell others who know and love someone going through cancer…. Send them a note. Just a little ‘thinking of you’ can go a long way. Especially when accompanied by ‘I don’t expect you to respond’. I can’t tell you the number of times certain people reached out and all I could do was ‘heart or like’ the message. Also, if you’re giving someone food for any reason…. Don’t do a marinara pasta bake! I know it’s easy and cheap. But sooo many people do it! And the mouth can be so sensitive during treatment! Honestly, gift cards for food places are great. Or non dinner things!
Elizabeth, thanks for hosting this conversation. It’s so important!
Thank you, Nadine, for sharing all of this with us ❤️ wishing you all the very best
Thank you to all who shared their stories! It was so impactful to hear the different perspectives. I have a PhD in cancer biology and one of the things I got to do in my program was shadow the oncologists for a month. It was an incredibly emotional, eye opening experience. I sat in on appointments with someone who was jaundiced and dying from liver failure and also someone who was taking a break from chemo to go mountain climbing. Cancer is ridiculously not fair. I got to listen in as an incredible doctor explained treatment options to a patient newly diagnosed with breast cancer too.
One of the biggest take aways from that experience, and my degree program overall, is that as a general population, we hear cancer and assume it's one disease, when in reality each type of cancer is a separate disease with specific treatments indicated for it. Even within breast cancer, the type of treatment you would receive depends on the hormone receptors that are present in the tumor. There are 3 key ones, and you could have none, 1, 2, or 3 of them, each with a slightly different approach to the drugs you might receive. That doesn't even account for staging and how that might play in to any surgery or radiation plans. It's enormously complex. I don't do cancer research anymore, but I am endlessly grateful to have learned how much creativity, resilience, and passion it takes to continue to forge ahead on the path toward new & better treatments. Thanks, Elizabeth, for creating the space for this conversation. It's so important!!
Kelly, thanks so much for sharing all of this. I will admit, I didn't realize how often, in my mind, I would lump people with the same types of cancer together. When we were in the thick of IVF, I absolutely HATED when people did that to us — ie "I know a person who did this and they had a baby!" — so I'm very glad for this reminder that experiences can vary widely.
I am so incredibly grateful for this post. As I went through cancer and chemo, I was ravenous to read about other people’s experiences and their appearance but I struggled to find first hand reflections. This post is what I was looking for.
When I was diagnosed with Hodgkin’s Lymphoma in June 2020 (yes, right as the world was falling apart), there was a lot of scary stuff to face: having to attend chemo alone because of COVID, isolation because I couldn’t have visitors at home because of COVID, not being able to work even if I felt like it because I worked in a public school and would be exposed to COVID, etc. (Over all, I would just not suggest getting cancer during a pandemic. It stinks 😝). Also because of COVID, my husband and I had just cancelled our big wedding, eloped, and were hoping to try again for a big celebratory wedding the next year. Through all of this, the changes in my physical appearance were the most taxing and long-term side effects, largely because I was planning to have my wedding re-do within the next year. I did not want a single thing about my appearance to change. I wanted to look “normal” for my wedding photos.
That was not realistic for me. During my 8 rounds of chemo, I refused to shave my head. This meant that every time I showered the walls of my shower would be tattooed with clumps and clumps of hair. Imagine all the hair you loose in the shower over a 1 month period… that was what I’d lose in one shower. It was so painful. I would cry every time I showered. I couldn’t pick my hair from the walls and drain, so my precious husband would clean behind me… it was dark.
I never shaved my head, but my hair thinned significantly. When I was finally cleared by my doctors and chemo was over, I pursued natural beaded rows (NBR) extensions. These extensions were life changing. They made me look as normal as possible as my hair regrew underneath my remaining scraggly pre-chemo hair. Getting these extensions was a huge marker in physically becoming “me” again.
The other physical aspect that was difficult was weight gain. I gained about 30 lbs from the steroids and from my fatigue which led to spending days and days in bed. My oval face turned into a fluffy marshmallow. It took much longer to recover this aspect of “me” but about 3 years after my original diagnosis I began walking daily which turned into running daily. Running has been such a gift. Not only has it allowed me to reclaim control over my weight, but it is a hard thing that I CHOOSE to do. Cancer happened to me, and I survived, but running miles and miles and feeling the ache in my legs or feet is my choice. It’s good pain. It’s pain that proves I am strong and alive.
I did not look the same after surviving cancer and completing chemo. However, four years out, now I DO. All that is left are two scars on my neck and chest. I’m proud of those scars now. At the time, they made me cry, reminding me of the terrible, terrible battle I felt like I was loosing most days. Now, I proudly wear tank tops that show those scars because the scars are proof of my strength. I’m proud to have a physical reminder that I have persevered.
Oh, Abbie - thank you so much for sharing this vivid picture of your experience. Wishing I could reach through this screen and give you the biggest hug. Sending love and well wishes. xo
So many thanks to everyone who shared their stories and thoughts. And to you, Elizabeth, for organizing. Everyone sharing how they just wanted to look normal helped me frame my freak out at the dermatologist this week. I had melanoma removed from my arm 2.5 years ago when my daughter was 2 months old. I was lucky - it was caught early. I didn’t have to do chemo or treatments. But I HATE how noticeable the very long and very red scar on my arm is even after all of this time. After months of laser treatment with no real improvement I was in tears this week and feeling ashamed I just wanted my arm to look normal and not have to talk about it, especially with my very boo boo obsessed 2.5 year old. But reading these stories made me realize that is totally normal! It’s ok not to want your body commented on! So thank you everyone for that bit of healing this week.
Christine, I'm so grateful you caught it early and absolutely hear you on the scar thoughts. Any chances, as someone here said, that are not your choice are difficult and you need to feel all the feelings. AND I also read the stories above and reframed a lot of my thinking on my own scars (from skin cancer last year and thyroid removal awhile ago) — I'm so grateful for these women and their willingness to share.
Thank you for gathering and sharing these perspectives Elizabeth… it’s so important to to consider others’ lived experiences and I’m so grateful to have ready these women’s accounts
Thank you for reading, Serene! I'm so glad to be able to share, all thanks to the women who so generously gave their time and insights.
Thank you so much for sharing these stories, Elizabeth! And thank you to the sharers featured here for imparting their personal experience and wisdom to all of us. So much of the advice here feels universal: (1) don't comment on someone's appearance (particularly inviting comparisons to how they "should" look); and (2) remember that everyone is fighting their own battles.
While I am ***not at all*** comparing my experience to cancer, some of these stories reminded me of when my babies were in the NICU. They were premature and extremely underweight, so I had never grown the expected big belly during my pregnancy, and thus my body "bounced back" (a term I hate) relatively quickly. A few weeks postpartum, I ran into an acquaintance, who exclaimed, "Wow! You don't look like you just had twins!" I know she meant well, but it was crushing. My body and my life, in that moment, didn't "look like" I was a mother at all; after all, I was going back to an empty home while a stranger at the hospital cared for my babies during the night. It was well-intentioned but devastating. It taught me to be much more wary about how I reflect someone's physical appearance back at them.
Hi Rachel, I have heard from a number of people who have said something to the effect of what you are saying here, how the sentiments expressed in these stories make them feel seen in a different, difficult scenario. I think/hope that's where a greater collective empathy comes into play? Grateful for your willingness to share.
This is such a great, thoughtful post.
Elizabeth, thank you so much for creating a space where we can have a nuanced conversation about this! I was diagnosed last year, at 42, with rectal cancer. My physical appearance remained pretty consistent despite some gnarly treatments and side effects. To be honest, all other things held equal, I had plenty of symptoms I would have gladly traded for hair loss or other changes in my appearance. Rectal cancer is a special burden because to be open about your symptoms, you have to discuss typically taboo topics like rectums, anal sphincters, poop, and blood. I felt especially isolated because people who were perfectly comfortable commenting on my unchanged appearance were often uncomfortable discussing the messy and debilitating changes I was actually experiencing.
Regarding Princess Catherine: So Many Feelings! On one hand, I am so glad a prominent person is publicly complicating the narrative that all of us cancer patients are out here losing our hair and looking permanently peaked. On the other hand, I don't even want to assume she didn't lose her hair! Wigs can look great! I'm glad she shared some context before her appearance, noting that she has good days and bad, which I empathize with. But seeing her also made me realize more deeply than before the limitations of a job that requires you to keep calm and carry on, to be seen and not heard. I long for her to be able use her platform to show more of the multi-dimensionality of cancer, to be able to say, "You never know what someone is going through. Yes, I look great, but also I'm in a great deal of pain/depressed about my mortality/pooping blood." (Definitely projecting on that last one, ha!) Yet I know she can't set this example, because it directly contradicts the "never complain, never explain" culture of the monarchy.
I wrote a bit more on dealing with cancer while "looking well" if anyone is interested in diving deeper: https://open.substack.com/pub/sarahmcwu/p/quiet-cancer-ing
Wow this is such an impactful post. These stories really bring to life how diverse and difficult life with cancer can be. I admit my first reaction on seeing Kate was about her hair, when it should of course been about what it took for her to be there and what it meant to her family she was there. We never know what others are going through and these stories are such powerful reminders of that. Thank you for collecting them and thank you to those who shared.
Thank you to all who shared their stories. ❤️❤️
Such powerful stories here! Thank you sincerely to all who shared their stories and to Elizabeth for giving them the platform. I learned a great deal from these strong women.
Wow, so many of these stories and responses are so powerful. Thank you Elizabeth for letting these brave women share their stories. My prayers go out to anyone affected or touched by cancer. ❤️
Thank you, Elizabeth, for (as always) putting out valuable and thoughtful content to educate us and make us think. And thank you to all who chose to share their stories. I have immense gratitude for your kindness in retelling your experience and sharing your thoughts so I/we can all learn and be/do better. Wishing all health!