I’ve never reached out on a forum or in any way actually. I’m typically a strong woman. But this breast cancer diagnosis followed by a lumpectomy and being told radiation and hormone blockers was my path to beating this as just the beginning. I thought I could do it. But last week I was told I will need TC chemotherapy for 4 sessions three weeks apart. This is due to my oncotype dx score being 32 which puts me at a higher risk for recurrence. Needless to say it was yet another bump in my already very bumpy journey. I’m a research junky and have found many great stories as well as not so great ones regarding chemo. I welcome any advice or support I can get.
Hi Lynlucy
You’re in the right place for reassurance and information/advice. I’m sorry though that you’ve found yourself here. Do join the December 2019 starters as you’ll have others to share your experiences with.
I too had a diagnosis that changed over the weeks and I found I just numbed out after a while and let them get on with it. Generally I’m a research junky but I knew that would be disastrous so I went the opposite way from you, opting for the minimum of questions and only googling ideas of what to take for my first chemo. We’re all different.
There’s a culture around cancer that generates and continues to fuel fear - the ads don’t help. Everyone responds differently to chemo. I was wiped out by it but I know many women who’ve carried on almost as normal. It’s nothing to do with strength. I suspect if you measure yourself that way, it may be harder to accept that you can’t predict what chemo’s going to be like for you and harder to go with the flow, which might not always feel great. Feeling sh** is not weakness or failure - it’s a natural response.
Your first chemo will leave you wondering what you were worried about. My oncologist prescribed lorazepam because I was terrified to the point of no-show but, after the first, it was unnecessary. You have your blood levels checked, usually at clinic a couple of days before, sometimes there and then (long delay likely there). Then you have your cannula inserted (painless usually) and have the prep of saline (which gave me a momentary chemical taste), anti-emetics, antihistamine and steroid. That takes about half an hour. The steroid can cause a strange physical reaction if administered too fast that I can only describe as sitting naked in a nettle patch but it wears off quickly. Then you have the main drugs which take maybe 90 minutes and you can sit and chat to the friend/partner with you (choose wisely - a needle-phobe isn’t a great choice) or you can read/doze/get to know your neighbours etc. You can’t do anything requiring two hands as hand movement can block the flow and set your drip monitor alarm bleeping (a noise you will grow to loathe). Once the main treatment is over, a final saline flush and off to go. Simple. But don’t make plans. One hiccup in the chain (like the pharmacy is short-staffed) and a 3 hour session can extend to 6 hours. Be flexible. It’s rarely their fault! Cold-capping adds up to 3 extra hours but that’s another issue for a discussion thread.
The steroid may give you energy and you may have some to take at home to cover the most vulnerable period for sickness. I never felt sick or was sick but the hospital equipped me with anti-nausea drugs in case. That may be because it’s my phobia, as my friend didn’t get them till second treatment (after she’d had a day of sickness). Once the steroids wear off, you move into the phase where you wait for side effects or go about your life well-prepared. Reading the information you’re given about TC is one bit of research I’d advise. Otherwise, try to steer clear of Google - it has information that’s outdated, overly simplistic or above our pay grade and generally has the capacity to scare the wits out of us. It never takes into account emotions and has no idea about your specific diagnosis. My advice is save your questions for your team, especially your breast-care nurse and adjuvant oncology nurse, and the nurses here (who are great).
I have one more bit of advice. You’ll have been instructed on the importance of monitoring your temperature. Do check your thermometer is accurate. I bought a new one that we eventually discovered was faulty - after I’d been hospitalised with neutropoenic fever and sepsis, having been confident my 36C temperature reading was fine. It was in fact above 38C. Such an experience can be avoided!
I’ve got carried away - I’m sure others will equip you with more advice but basically I hope I’ve shown that i) it’s not that bad ii) the effects are unpredictable and iii) strength doesn’t come into it - we might describe ourselves as wimps but every one of us who’s got through it must have been a tower of strength. And we’ve all got through it. That must tell you something.
All the best for what lies ahead. We all manage it in our own ways but it’s great to know you can find others who understand. The comfort of strangers? Take good care of yourself,
Jan x