On Jan 11th I had my second chemotherapy treatment. Here is my honest account of chemotherapy for breast cancer. If you’re wondering what does chemo feel like or is chemotherapy painful, this is purely my experience on red devil chemo.
My Experience of Red Devil Chemo
The Second Chemotherapy Treatment
After the first chemotherapy treatment was so tough with the chest infection almost killing me (not much of an exaggeration), I was really hopeful that this time, without the infection, I would cope with the chemotherapy treatment side effects much better. That it would be easier. Although I had read about 2nd chemo worse than 1st for some.
I’d had mixed feedback on how the second chemotherapy treatment side effects measured up against the first. Some say it gets progressively worse with each treatment. Some say the first and second are the worst. Basically, it’s different for everyone.
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I had decided to do the cold cap chemotherapy option again and despite it being unpleasant, it wasn’t as bad as I remembered.
I told one of my amazing chemo nurses, Deb (not her real name), that I was thinking of not doing it and embracing the baldness and she said that was a brilliant idea and was so encouraging. She gave me all the benefits of not doing it.
Five minutes later I’d changed my mind and told her I was going to continue with it. Deb said that was brilliant and again was encouraging and gave me all the benefits of doing that too.
Basically, Deb is amazing and so positive and will support me through all of my decisions – everyone needs a Deb :)
I actually managed to sleep through some of the session, which was quite nice for me and I imagine quite boring for Mr M who was at my side the entire time.
I got to meet two lovely mums who are undergoing chemo too and met a cute little baby boy from one of them.
Jessie (not her real name) found out during pregnancy that she had triple negative breast cancer. She started chemo whilst pregnant, then had her baby early and has now recommenced chemo. I think she’s amazing, just so strong.
At the end of the session I felt the cold cap not quite in contact with my scalp at the top and told Mr M I thought it wouldn’t work well this time round. Rather than feel disappointed, I actually felt relief. Like I had a good excuse not to use it next time. Not that I especially wanted to lose my hair, I just felt like that was going to happen anyway.
From what I can tell, it’s pretty much a given on my form of chemo, AC chemotherapy, that you’ll lose your hair.
AC Chemo – Red Devil Chemo
I want to take this opportunity to tell you a little bit more about AC chemo and what does chemo do. Some people think chemo side effects are limited to vomiting and chemotherapy hair loss. Unfortunately, for some at least, that is the tip of the iceberg. Although perhaps it’s a sign chemo is working.
I’ve had major internal struggles with how much I want to tell you about my chemo experience.
On one hand, I want to be completely honest, with full disclosure. On the other hand, I’m nervous about potentially scaring others who might end up undergoing AC chemo themselves. I would hate to add to the complications of chemotherapy horror stories already online. I wanted mine to be one of the positive chemotherapy personal stories too.
I’ve decided to share my experience fully but I caveat it with this: this is my experience and these are my symptoms. There is absolutely no guarantee that anyone else will experience things in the same way. The next person might have way less, or more, common side effects of chemotherapy on the body.
I want to be brave but I want to be honest too.
If you’re sensitive to reading about illness then please don’t read on. If you want to gain an insight into what I’m truly going through each cycle, please stay. This is the truth about chemotherapy for me.
A little about AC Chemo and what is Chemotherapy like
- AC stands for Adriamycin (doxorubicin) and Cyclophosphamide.
- It’s nicknamed the “red devil”. I wouldn’t recommend Googling “red devil chemo what to expect”. Is chemo painful as it goes in? No it wasn’t for me. Does chemotherapy hurt? No, again, not for me.
- How does chemotherapy work and what is chemo? It’s purpose is to destroy cancer cells. As I’ve said before, my triple negative breast cancer diagnosis unfortunately has no targeted treatment – so they throw the red devil chemo drug at it as it’s the best (and worst) chemo there is.
My Second Cycle Chemo Diary
My after effects of chemotherapy started again the day after treatment, with severe nausea and heartburn. Thankfully I haven’t vomited. I had an upset tummy since the first day of my first cycle so I’m weak and dehydrated a lot of the time. I take two different pills and special dissolvable ‘wafers’ a few times a day to fight the nausea.
Then I ask my Oncology nurses how long after chemo will I feel better and they recommended keeping a diary. It kind of became my diary of tips for surviving the red devil chemo.
And I could use it to measure as I wondered do chemo side effects get worse with each treatment.
For the first week I can’t eat much and lost 3kgs which ordinarily would be great except I’m under strong orders from my Oncology team not to lose weight throughout treatment because my chemo dosage and plan is tied to my starting weight. Losing weight would mean the dosage of chemo I’m given it too high for my system to take.
On Day 2, my husband administers the Neulasta injection in my tummy. This will help boost my white blood cells and prevent me being hospitalised like last cycle with neutropenia.
I’m scared to death having read about the potentially debilitating bone pain the injection causes.
The side effects of chemo
How long do the after effects of chemo last? As the days go on, I feel slowly more and more poisoned. It starts on about Day 3, like that foggy-headed hungover feeling and gets worse each day. Add to that headaches – but I can’t take anything for them as I have to take my temperature frequently to ensure it doesn’t go over 38. If it does, I have to go to the hospital and they will authorise an ambulance if necessary. It’s that important.
My eyes are dry and itchy and my nose runs constantly. Every day is an endless cycle of blowing my nose, washing my hands, coughing, washing my hands, going to the toilet, washing my hands and so on. I have to use my own bathroom as the chemo drugs come out through my urine and I cannot risk my family coming into contact with them. I have to flush the toilet twice each time with the lid down.
Thankfully we have two bathrooms or things could get very difficult. I’m grateful for that.
I take a prescribed sedative every night from Day 1 because the steroids keep me awake all night otherwise – as does the anxiety and constant questioning of every potential symptom I’m feeling.
On Day 4 my body starts aching and my neck is stiff, making sleep uncomfortable. And sitting. And standing.
By Day 5 my hair is coming out like sheets of snow. There are no bald patches but piles of hair on the bathroom counter and floor. I spend all day pulling fallen hair off my clothes and neck. It’s all over the floor everywhere and Mr M kindly vacuums it away so I don’t have to see it. I start Googling hair growth after chemo.
My mouth is extremely dry and sore by now and I have painful ulcers. It’s as if I’ve swallowed a fireball and it’s burned and bruised my whole mouth.
Everything tastes like cardboard yet smells disgustingly strong. Eating is no fun. I’m now on an accidental diet during chemotherapy. Awesome.
On Day 6 my mouth and throat is really sore and Deb recommends I get Difflam mouthwash which helps to numb it. It makes eating even harder but at least the pain is gone. Deb has lots of great suggestions for chemotherapy side effects remedies.
The black cloud
I dread Day 7 as I remember how down I felt during the first cycle and true to form, the black cloud descends. My red devil chemo worst days. I feel like a ghost in my own home, detached from everything. For two days I stay in my room, I’m too down to leave except to cuddle my babies but I’m too weak to play with them. I feel horribly guilty and selfish.
My immune system has plummeted and I’m so at risk of infection that I can’t go out. I can’t be in crowds of people or near anyone with even a cold. It’s lonely. It’s one of the annoying risks of chemotherapy.
I’m in a permanent state of confusion and memory loss. Everything is hard. All is not right with the world. It’s all wrong. What if chemotherapy doesn’t work?
I feel sad that my friends aren’t calling, that some friends haven’t called at all, haven’t even acknowledged that I had cancer. They are not my friends any more.
I’m angry that people think my ‘all clear’ result after surgery means we can all move on. I can’t move on, I’m trapped in this horrific treatment plan. I want it to end, I seriously contemplate not going in for any more chemo. If I just stop now, I’ll start getting better again instead of worse. I’ll stop poisoning my body to the point that some things no longer function.
I wonder if some people think a lumpectomy is minor surgery. Maybe that’s what I thought too, until I knew better. My scar and the piece missing from my body doesn’t look minor to me.
I feel angry
I’m grateful that I didn’t have to have a mastectomy. I’m terrified that if I end up having the BRCA1 or BRCA2 gene, I will have to have a bilateral mastectomy and my ovaries removed.
When will the cancer ‘journey’ end?
Friends do call but I can’t answer the phone, I’m not happy enough to talk and my mouth is sore.
I feel an anger that I’ve never felt before. I’m angry that my cancer is triple negative – that it’s aggressive and fast-growing. That my treatment is a Hail Mary. That it will all be for nothing because the cancer will come back like it has for so so many others with triple negative breast cancer. Does chemotherapy cure cancer? Not necessarily for me. Although the chemotherapy survival rate is high enough for me to think chemo is worth it.
I want to scream that it isn’t fair, why is this happening, why me? Why don’t people understand how bloody harrowing this is? If they knew, if they could experience it for 5 minutes. I feel guilty for thinking that and I wouldn’t wish AC chemo on my worst enemy.
I resolve to cut some people out of my life when this is all over. To surround myself only with people who genuinely care. People who are positive.
I turn a corner
By Day 9 I feel brighter but balder. The hair is still a-falling. We go to the hair salon to get my head shaved. Despite almost having an anxiety attack when I get there, once the shaver touches my head I feel strangely elated. I feel that ‘liberation’ I’ve read about and I’m so thankful for that.
We laugh and joke about how I look like Annie Lennox, then Miley Cyrus, then Sinead O’Connor. I don’t look too bad really. Despite the steroid-bloated face, my pale and sallow skin and my sparse eyebrows and eyelashes. I look ok bald.
My new wig is fitted and cut and I leave feeling happier because I lost my hair on my terms.
On Days 10-12 I experience hot flashes constantly which leads me to believe I’m in early menopause. My Oncologist has already told me it’s fairly inevitable that this will happen and I will either come out of it after treatment has ended or I won’t. I’m thankful that my family is already complete. I cry for the women who haven’t started or finished their families that are going through this. I take on their pain and it makes me desperately sad.
On Day 13 my period arrives a week late – like a surprise visit from an old friend. Even when I’m doubled over with the worst cramps of my life, I’m happy that I’ve fended off menopause for one more month at least.
On Day 15 my thumb nails start to turn black and I read online how all of my nails might fall off altogether through treatment.
The cycle ends
I feel better though and I hope I feel this way for the next 6 days. I hope to get stronger and more positive again as each day goes by.
Because in 7 days, I have my third encounter with the red devil. And all of this starts again.
And I just want it to stop.
On Day 16 I’m much better again. How many days after chemo do you feel better does vary for everyone. Despite the mouth ulcers, I feel quite good. And it’s a lovely sunny day outside.
I stand outside and feel the sun on my face and shoulders and it makes me happy.
I’m half way through the worst of it and I have 6 days to make the most of feeling well, to play with my children, to laugh with my husband and to catch up on all of the calls, texts and emails. People love me. They want me to to be here and I want to be here with them.
I’m grateful for the love and support of my family and friends who are helping me get through this. Thank you.
It’s truly horrific. I hate it. But it’s temporary. It doesn’t feel like it now but I know it will end. I put my faith in the high chemotherapy success rate. So far that has to be the one of the only real benefits of chemotherapy. It will work.
Two to go. What happens after chemotherapy is finished? What is life after cancer like.
** UPDATE – Jan 31st 2016 **
Just in case you missed my follow up post, I wanted to update anyone reading this one that I didn’t stay feeling like this for long. In fact, each day since I’ve felt better in every way and my family and friends have really rallied round.
I have my third AC chemo experience tomorrow and I’m doing everything I can to change my mindset about it. Instead of ‘poisoning me’, it’s killing off those cancer cells (if there are any left!) and helping me, not harming me. There is a high chemo success rate.
I know that I will get through it and after a few days I’ll start to feel like myself again. This too shall pass.
Related: Download my Chemo Appointment Reminder Stickers here.
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Remember, this is my own honest account of chemotherapy experience. Yours will likely be very different and I hope we are all breast cancer survivors x
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Are you doing red devil chemo? I hope my account of red devil chemotherapy treatment has helped you a bit – this horrible phase will pass x