I’m due to meet with my oncologist on the 27th Jan but have so many questions running around in my head!
I’m HER2 positive so looking at chemo and Herceptin. I know everyone reacts differently but I would really appreciate any info on your day to day experiences. At the moment the thing I’m struggling with is what life will be like once I start chemo. Are there weeks/days when you feel well enough to have some sort of normality? At the moment I feel my life has been taken over by cancer, I’m determined to not feel like this for the next 12 months.
Is Herceptin a more gentle ride? At the moment I’m fearing that I have to live like a hermit for 12 months!!! Sorry for all the questions x
You’re at a very difficult time, head spinning, reeling from the diagnosis and maybe surgery. No wonder you have many questions. Unfortunately, the kind of questions you’re asking are ones the oncologists can’t answer - everyone is different. You don’t specify what chemotherapy drugs you’re having but I was wiped out by chemo, felt like a zombie most days and my life was on hold for more than 4 months (after which there was 4 weeks of daily radiotherapy) but others carry on working, maybe part-time, running their households and socialising. I still had hair at the end of chemo (no lashes or pubic hair); others lose their hair by their second session. I’m suffering side effects 8 months later; others move on, barely affected. I was told my second treatment (paclitaxel) would be a much gentler ride than EC. Wrong! Yet it is for other women.
It’s not a matter of strength or weakness, determination v lack of willpower. It really is a lottery as to how you will react, how long you’ll be affected, what side effects will floor you and which will linger. We are all different and I reckon if half a dozen of us wrote in detail how chemo affected us, you’d find half a dozen very different experiences. I hope you’ll join the February Starters thread and benefit from sharing your experiences.
What I’d say is be ready for anything but don’t get anxious about the worst (the information leaflets tend to give worst-case scenarios). Set aside the first weeks as time for yourself and make sure you’ve arranged plenty of support in terms of transport, running the home and moral support. Assess how you’re doing but be ready for a different reaction with each treatment - sometimes easier, sometimes harder. Choose your company very carefully. You’ll soon know which friends you want around you, if any. Above all, be kind to yourself, whatever happens. Oh, and check you have an accurate thermometer - I bought a new one and ended up with neutropoenic sepsis because it gave inaccurate readings so I didn’t contact my hospital soon enough.
Just to reassure and offer an alternative experience, I had 6 lots of EC which I sailed through, yes there were the odd A&E visits but nothing too bad. I had no nausea or sickness like lots do, was able to work flexibly throughout.
In terms of timelines, I was on a 3 weekly cycle and whilst on any sickness/steroid meds for 3 days following chemo felt fine, the following week was generally a bit rough (some duvet days ensued), felt fine then until next cycle.
I did however feel the cumulative effect of EC towards the end and was, following last chemo very zombie like and not my usual happy self, just no energy for life! This only lasted for just over a week post 3 day meds.
In A&E after 1st EC for neutropenic sepsis for 5 days but felt fine after day 1 and it was a lovely experience (like a spa but unfortunately no facials, massages etc.) as in protective isolation. Given GCSF injections for 5 days post 3 day meds which stopped happening again. Then an annoying chest infection Dec necessitated 3 visits to A&E (needed 3 as my local A&E is pants!), given fluids, antibiotic IV and sent home with course of antibiotics.
So that’s my, fairly uneventful experience, hope yours is equally good.
I hope your first appointment went well. I remember the day I went home after my first chemotherapy session, wondering what would happen to me. I was grateful to one of the chemo nurses telling me not to waste money on a taxi and just walk back home (a 20 mins walk). It made me feel less like a sick person and I have indeed walked to all my sessions so far (just one left!). Like Jan has already said, it is impossible to predict your side effects, but it is definitely possible that it doesn’t have to be all bad.
My tips for the time ahead: Look for some nice guided meditations. They took me away from feeling crappy, helped me fall asleep and made me realise how important it is to just relax. I enjoy the ones that Tara Brach posts for free on her website, and the ones at ilivethelifeilove.com. Also, splurge on some lovely bath or shower products. I found that long showers allowed me to re-connect with myself, pampering being a way back to feeling good about my body. Your body deserves the extra credit as it has to deal with this tough treatment! And last, but not least, drink lots of water and, have some coconut water in the fridge! When your mouth gets dry, it goes down better than normal water. It is great for replenishing electrolytes (when food just passes through) while, in large quantities, it is also laxative…so perfect in case of constipation too.
I am due to start chemo on 26 February. Like you I really don’t know what to expect but looking forward to chatting with you and others here and hopefully supporting one another through xx
I was diagnosed july 2019 started chemo in August. I was the same as you I didn’t really know much about chemo and thought it would knock me off my feet. I had 3 FEC and 3 T. My treatments were every 3 weeks. To be honest after the natural fear of the first one (fearing the unknown) it wasn’t that bad. Chemo made me tired and I had a little bone pain which I was prescribed meds for. I managed little weekends away with husband and did manage a relatively normal life although a little slower. I quickly learnt to take each day as it comes and stay as positive as you can because I found that’s half the battle. I really hope this helps you.