The New Normal My Journey Living With Cancer

People often ask me, “How are you coping with your treatment — or life after it?” And the truth is, it’s different for everyone. Some days you feel strong, ready to fight. Other days, you’re so drained you wonder how you’ll get through the next hour, let alone the next round. But somehow, we do. Because the alternative? Well, that’s not really an option.

I’ve learned a lot over the course of my cancer journey — some things I expected, but a lot caught me off guard. So, I want to share a bit about what it was really like, and the things no one warned me about.

Chemo: Not What I Imagined

When I had my first chemo, I was terrified. I pictured myself bedbound and vomiting nonstop. Instead, I felt oddly drunk after each session. Then I’d get really hungry, only to crash a few hours later into sheer exhaustion. Sometimes nausea would kick in the next day, but the anti-sickness meds helped a lot. A couple of days later, I’d feel flu-ish — aching body, low-grade fever, wiped out.

The hardest part? The bone-deep tiredness. My chemo cycle was every three weeks, and it wasn’t until midway through week two that I’d start feeling like a human being again.

Then came the weird side effects — like a red, sunburn-like rash that peeled along my fingers and hands. I also had to inject myself with filgrastim for five nights after each chemo (thanks, Docetaxel!). The injections weren’t bad — tiny needle, quick jab in the stomach — but the bone pain afterward? Awful. I was sent home with liquid morphine for that, which helped take the edge off.

The Menopause No One Talks About

Chemo threw me straight into menopause. On top of treatment side effects and my fibromyalgia, I also had to deal with hot flushes that made me nauseous and clammy. The combination was brutal. I developed peripheral neuropathy, too — numbness and tingling in my hands and feet, and occasional spasms and cramps that still haven’t fully gone away.

Losing My Hair (And My Mind, Briefly)

Hair loss typically starts around day 14 after the first chemo, unless you’re cold-capping. I tried, but it triggered migraines. Soon after, my scalp got sore — even the weight of my hair hurt. Then the clumps started falling out.

Buzzing my head actually helped ease the pain. With the weight gone, the inflammation in my hair follicles settled. And once I was bald? I had a bit of fun with it. I slapped on temporary butterfly tattoos and wore them like a crown. Humour helped — a lot.

PICC Lines and Chest Ports

During my first round of treatment, I had a PICC line. It made getting chemo easier, but came with challenges: I couldn’t get it wet, the dressing irritated my skin, and it always felt like it was in the way. My son learned to flush and care for it at home, which was a blessing.

For my second go-round, I got a chest port instead. It’s tucked under the skin, so I can shower and even swim with no hassle. It was sore at first, but now I barely notice it.

Mastectomy and Aftercare

My single mastectomy was a tough one — more mentally than physically. I chose not to have reconstruction. For me, the additional surgeries, scars, and uncertainty just weren’t worth it. After surgery, I had fluid buildup (I sounded like a hot water bottle), which had to be drained.

Four years on, I still have numbness under my arm and limited range of motion, despite daily stretching. Scars? Not the neat, tidy kind. But they’re part of me now.

I now use a silicone prosthetic, which fits into mastectomy bras. I also have a Boost prosthetic — lighter and better for summer. The soft foam one they give you after surgery didn’t work for me — it floated around like a runaway marshmallow.

Radiotherapy Surprises

Radiotherapy was daily, Monday to Friday, for three weeks. Each session was quick, about 20 minutes, but I wasn’t expecting the tiny tattoo dots they gave me to align the machine. Because my treatment area was near my heart, they used a gel pad over the site.

I had some redness, like sunburn, but the fatigue was next level. It built up slowly and lasted weeks after treatment ended. I’ve also got a permanent patch of broken blood vessels across my chest now — a little square reminder of everything I’ve been through.

Round Two: Chemo & Immunotherapy

The second time, surgery wasn’t an option. The cancer was in lymph nodes too risky to remove, and I couldn’t have more radiation on that side. So I had weekly chemo (three weeks on, one off) for a year, and immunotherapy every three weeks.

Immunotherapy revved up my immune system, sometimes too much — I had nasty diarrhea, rashes, and joint pain. Steroids helped, but my neuropathy worsened, and it hasn’t gone away, even a year after stopping treatment. I’m tired all the time, though some of that may be fibromyalgia and menopause. It’s a cocktail of chaos, really.

The Scanxiety Is Real

Now, I get CT scans every three months. It’s nerve-wracking. So far, I’ve been stable for a year — and I’m holding onto that. If things change, there are still options. But let’s hope I don’t need them for a long while yet.

Surviving vs. Living

One of the hardest realizations? I wasn’t living — I was just surviving. I had to stop putting my life on hold. I got counselling, joined online groups, and started opening up more. I remind myself of my limitations and try not to beat myself up when I can’t do something.

Cancer changes you. These days, I’m more relaxed, less reactive. And I lean into humour whenever I can. Like when my prosthetic breast fell out of my top while I bent to grab a package — right in front of the delivery guy. Or when I drop my meds because my hands spasm. You’ve got to laugh. Otherwise, you’d cry every time the pills go bouncing across the floor.

What Helps?

Everyone copes differently, but having a good support system makes a huge difference. Knowing what to expect helps you prepare — mentally and physically. But above all, don’t stop living. Take the trip, eat the cake, get the tattoo, laugh at the awkward moments. Keep going, even if it’s just one day at a time.

Because you’re not just a patient — you’re a person. And you still deserve a life.

I still get people asking me “When is your chemo done?” and they are often surprised when I tell them “It doesn’t finish until I do”  You have two categories with treatment: Curative, which is treated with adjuvant therapies (Chemo, Radiotherapy, Surgery), and Non-Curative, which used palliative treatment.  I am under the non-curative category.

Think of non-curative cancer as a chronic illness, like diabetes or heart disease.  You have to take your medication to keep things under control.  That’s what my treatment is, a way to keep things under control.  I have regular CT scans to make sure nothing new is growing.  I can take a break from treatment, but they will still monitor things for any signs of the cancer spreading or new tumours appearing.

It was a bummer when I first realized that my chemo treatment was for life.  When I first had cancer a few years back, I had something to look forward to, the end of my treatment.  Now, there is no end to my treatment.  My hair won’t ever grow back, I’ll always have these bouts of chronic fatigue, muscle fatigue, and aches and pains.  Right now though, it’s bearable.  I can still function on a day-to-day basis.  It doesn’t mean I can get out there and run a marathon though.  I have to do things in small batches.  I can’t walk for too long because of the muscle fatigue.  I used to work as a freelance writer but I find that hard to do now.  It’s not always easy to work around the cancer and treatment side effects.

It’s not the same for everyone though.  I know people who can do more.  Part of my problem is that I already had Fibromyalgia before cancer.  So those symptoms are exacerbated by the treatment.  Everybody’s journey is different.  You do what you are able to do, rest your body when it needs rest, and never feel bad about what you can’t tackle.

I’m in the process of fighting cancer for the second time.  It’s breast cancer recurrence triple negative.  The definition of triple negative breast cancer, from the Macmillan website:

Breast cancer cells may have receptors (proteins) that hormones or a protein called HER2 can attach to. A specialist breast cancer doctor takes a sample of cancer cells during a biopsy or surgery to test for these receptors. If these receptors are found, you are usually treated with hormonal or targeted therapies.

Triple negative breast cancer does not have receptors for hormones, or HER2. This means treatment with hormonal or targeted therapy will not work.

Chemotherapy, along with surgery and radiotherapy, is the most effective treatment for triple negative breast cancer.

Triple negative breast cancer (TNBC) is sometimes described as a faster growing type of breast cancer. This may make you feel worried about it coming back. But the risk of it coming back depends on the same factors as any other type of breast cancer.

Triple negative accounts for 10% to 15% of breast cancer types. 

Let me say that you get a whole lot of information thrown your way while going through cancer treatment of any kind.  It’s good to write it down.  Most of my consultants would print off information to give me so that I could read it at home when my brain wasn’t spinning.

The treatment that I had when I was diagnosed back in 2020 was 6 cycles of FECT-T chemotherapy, then a single mastectomy and lymph node removal, and then 3 weeks of radiotherapy.  With this second occurrence, surgery is out because of where it is located and I can’t have any more radiotherapy on that side.  My first line of treatment is Chemotherapy and Immunotherapy.  For chemo, I am having nab paclitaxel, every week for 3 weeks, then a week off.  For the immunotherapy, I am having pembrolizumab once every three weeks.  It’s an intense regime and sometimes my immunotherapy falls on my week off.  Sometimes I have both chemo and immunotherapy on the same day, which kind of kicks my butt.  Immunotherapy can only be given for up to 2 years. Chemotherapy is ongoing until it either stops working or my body can’t handle it anymore.  If that happens, we move to a second line of treatment, but that hasn’t been discussed yet.

I started treatment on June 2nd, the day before my birthday.  So it’s been 6 months of treatment so far.  I’m on my second round of chemo cycles.  I had the original 12 cycles.  Now we are repeating that.  I had a scan in October and that came back good.  The nodules of cancer they saw in the last CT scan are not showing now and there doesn’t appear to be cancer spread anywhere else.  It’s a type of remission.  The cancer cells are still there trying to make new tumours but the chemo is killing them off before they can do that and the immunotherapy is helping my body fight it too.  It takes a toll on you over time though, I’m not going to lie.  I’ll start a new post on that.  There are so many different things to talk about, like PIC lines, coping with others, coping with your feelings, and dealing with side effects.  I’ll do my best to touch on these subjects and any others that you have questions about along the way.

Hi!  I’m Sherry.  I’m 54 years old, live in the UK (transplanted from the US), have an adult son and 6 cats.  I also have a reoccurrence of breast cancer, one that they can’t make go away this time.  I hope that, by sharing my experiences, I can help others who are going through cancer.  It’s also a way for me to vent in a way.  I have good and bad days, as do most people who are living with a cancer diagnosis.  But let me start at the beginning of my story, because it began back in the autumn of 2019.

What Is This Lump?

Somewhere around August of 2019, I discovered a strange lump in my breast.  I knew it felt different from other lumps, like benign cysts.  Yet, I delayed going to my doctor to talk about it until January 2020.  I know, stupid move.  I also knew, deep down, that it was more than likely cancer.  I kept it quiet through the Christmas holidays though.  At the time, I was in a relationship that was starting to feel more toxic than good.  Thankfully, we weren’t living together.  I have my own home where I live with my now 25 year old son and my 6 cats.

So, Christmas came and went.  I went to my GP who fast-tracked me for an appointment with the McMillan Breast Care Center.  My friend Loraine (ex-boyfriend’s Mom) went with me on the day of that appointment, and I will be forever grateful that I wasn’t alone.  It was a bit of a blur of activity.  They checked out the lump, did scans, did 5 biopsies, and then I was called in to see the consultant.  I was confused at first because he went straight into cancer types and treatments.  I remember saying “You mean if I have breast cancer?” and he got real quiet for a moment, then said “You definitely have breast cancer, we just need to see what type so that we can plan the right treatment for you.”

I went numb at that point.  Thankfully, Loraine had the foresight to take all of the notes the consultant wrote for me because I wanted to bolt.  They took us into the “quiet room” to give me some time while they scheduled more scans (bone scan, full body scans, all to see if the cancer had migrated anywhere else).  I cried.  I thought of my Mom. My Mom had breast cancer. They had to remove lymph nodes with hers, but she beat it and stayed in remission for 5 years. Unfortunately, she passed away from other complications on March 5^th 2017.

I slowly began to break the news to family and friends.  I didn’t tell everyone at once because I wasn’t ready to deal with the deluge of “I’m so sorry”, “You’ll beat this, you’re strong”, etc.  I was anxiously waiting to know what kind of breast cancer I had and just wanted to get started on whatever therapy I needed.  Waiting is the hardest part in the beginning.  You feel a bit set adrift, at least I did.  I felt like I was just going through the motions of life while it all sank in.  Mostly, I felt numb.  I was more worried about how my son would handle the news but he did alright.

A word on biopsies:  It’s normal for your boobs to leak for a few days after.  It’s also normal for the area that they biopsied to feel hard.  I nearly had a coronary when I suddenly felt more hard lumps in my breasts.  But it was just the swelling from the punctured areas.  The biopsy itself didn’t really hurt.  They make sure to numb the whole area.  You feel pressure and there is a loud click when they take a piece of the tumour that makes you jump.  I did feel sore for a few days after and, as mentioned earlier, there was the leaking.

The Aftermath

I was “lucky” enough to start my cancer treatment while the Covid pandemic and lockdowns were happening.  There was a flurry of CT scans and then the big day, March 10th!  The reveal, so to speak.  It was a mixed bag.  My cancer hadn’t spread any further than a few lymph nodes.  It was treatable, however, the cancer in the left breast was all through the ducts and skin.  My treatment plan:  6 cycles of chemo, a single mastectomy, and radiotherapy for 3 weeks.  I was upset about the mastectomy.  They did say I may be able to get reconstruction after all of my treatment was done, but that’s another part of the story.

What I had was Stage 3 invasive ductal carcinoma.  They weren’t yet sure if it was triple negative.  I think we found it wasn’t at the time.  I went through all of my treatment and remained cancer-free for 3 years.  Then, in March 2023 I went to see my GP about this constant hoarseness and chronic laryngitis I had been dealing with.  They sent me to see an ENT (Ear, Nose, Throat specialist).  They found my left vocal cord was mostly paralysed but couldn’t tell why.  So I went for a CT scan.  About a week later I had a call from Chesterfield hospital to let me know I was being referred back to the breast clinic because of something they picked up in the CT Scan.  May 3rd, 2023 I had my appointment at the breast clinic for a mammogram of my good breast, CT scan and ultrasound on the suspicious side and a couple of biopsies.

May 19th was my consultation with the oncology team.  The cancer had returned to some lymph nodes in the chest wall.  I was there with my son.  They told me that it wasn’t the kind they could make go away this time but there were still treatment options to manage it.  I remember leaving the MacMillan center with my son and just stopped walking and then the tears came.  I got into the truck (my ex-husband Raven) and just said, let’s go home, please.  I then explained it to Raven.  It was certainly a kick in the pants.  I had to go through the whole “telling my family and friends” again in small doses.  I told my Dad first.  He was diagnosed with terminal cancer back in 2020 when I was going through my first fight.  They gave him months but he has been here for 3 years now fighting away.  It gives me hope.

That’s my background story about my cancer journey up until now.  I’ll write about this second round mostly but may refer back to the first time I went through it from time to time.