The New Normal My Journey Living With Cancer

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.