Hi Cecilia and Tara
Thanks for your support! Thursday went fine - the nurses were all lovely and even though I was sitting in a dental chair for five hours (my hospital has moved all chemo to the COVID-free environment of the dental hospital!) it wasn't uncomfortable.
Cecilia, here's my practical advice which I hope is helpful 🙂
What to wear: if you have a PICC line or port a top which gives the nurses easy access (easy in hot weather, I bought a gilet with me just in case I got cold but didn't need it).
What to take: snacks (I took crackers, mini cheddars, carrot sticks, herbal teabags - I only ate the crackers and crisps!); something to read/watch (though I mostly chatted to the nurse); a pillow/cushion if like me you're not going to be in a normal chemo chair; phone and charger. I also brought paracetamol and a hat (for the cold cap), my glasses in case I wanted to take my contacts out, and my line care passport. You may want to bring a spare bag too - I was given all my drugs to take home plus a sharps bin and it was a challenge getting them in my bag after!
What I'd have liked to know before:
1) For me, the nurse hand injected each syringe of chemo into my PICC line. Not sure if this is the same for everyone but it was actually very reassuring having her there while it was all going on.
2) That I have to self-inject into my tummy for seven days after to boost my neutrophils. I couldn't remember the demo the nurse gave me and rang the acute helpline who were very helpful (there's also a really good Macmillan video https://youtu.be/xQ95DzVzf3g). If you have to do this it is actually fine and doesn't hurt at all - I promise!
3) That it's really hard to pay attention to all the info they give you during chemo about the drugs you will take after each cycle. I think this usually happens in a session before you start, but my hospital isn't doing that because of COVID. I got confused about when to take my meds on the day of chemo and ended up being sick a couple of times (TMI, but on the plus side once I got the meds right it has got quickly better).
4) Even if you feel fine straight after do not attempt to eat normal size portions! I think that may also have contributed to me being sick (oops). Eat little and often and whatever takes your fancy (marmite toast has been a winner).
Sorry for such a long post but these are the things I would have liked to know beforehand so I really hope they're helpful. Take it easy and listen to what your body tells you. I will be thinking of you tomorrow and Tara on the 11th. xxx
I got my date for chemo today, it will start on the 11th June. I have to have 6 cycles every 3 weeks.
cubot I hope all went well for you yesterday.
I am new to this also Cecillia, (not sure if I have your name correct? ) So don’t know what will happen either, I guess we will soon know hey?
I am 36 years old and diagnosed in March with triple negative breast cancer. I had a lumpectomy in April and snb. I saw the oncologist for the first time last week and he has said that I am to start chemo mid June. I don’t yet have a date.
I too am nervous about chemo but want to get on with the treatment and get it over with and continue to live my life. I am sure everyone feels the same.
I have been reading posts on the forum and not commenting until now. I find other posts reassuring.
I'm 37, triple positive, had a mastectomy in mid-April and start chemo on 28 May. Three rounds of FEC, followed by three of docetaxel, with dual anti-HER2 targeted biological therapies starting with the docetaxel. I'm also going to be giving Zoladex a go. I know May isn't actually June but is *almost* it so hopefully it's OK if I pre-sneak into this thread...
While my recovery from surgery has been pretty smooth, I am a little nervous about chemo. I'm lucky in that I've had the time to do a fair bit of research about what to expect. Which has sometimes been super helpful and sometimes has completely freaked me out! I thought I'd share two of the things I found helpful here in case others do too:
* I cannot emphasise enough how fantastic Breast Cancer Now's Someone Like Me service has been. I've spoken to two wonderful volunteers (initially about Zoladex and about reconstruction, but also about so many other things including chemo) so I would really recommend it, particularly at the moment when it can feel quite isolated. https://breastcancernow.org/information-support/support-you/someone-me-telephone-support
* https://www.cancerhaircare.co.uk/hair-loss-help-at-home-coronavirus-support/ I'm giving the cold cap a go and had loads of questions. I emailed Cancer Hair Care and a lovely lady rang me up and did some super-helpful myth-busting which I found incredibly reassuring. They're also sending me a tailored goody bag 🙂
Good luck to everyone who has a date and everyone waiting for a date to start chemo. Looking forward to meeting you on here!
This thread is for anyone due to start chemotherapy in June 2020. I’m sure others will be here soon but please introduce yourself and you can all help one another through this phase of your treatment. If you have any questions please post away on here and others in the community will watch over you whilst you are getting started. Once you are into it you'll be pretty good at helping each other. You can also ask the nurses on this forum if you have any concerns. In the meantime, the top tip is always to stay well hydrated throughout chemo, aiming for 2 litres of water per day.
Here is the BCN guide on chemo:
Here’s an excellent article for anyone concerned about hairloss. That’s pretty much everyone starting chemo: https://pinklotus.com/powerup/breastcancer101/chemo-hair-loss-and-menopause-hair-too/
I finished my chemo over a year ago and doing very well again now. Here is my story which has some chemo tips on how I coped which were collectively shared from others who had gone through the same from this forum:
If you decide to set up a private group its good to stay on here also during treatment as I know from experience there are some people who watch but don't immediately pluck up the courage to join in. Your conversations can be a real comfort to others.
Best wishes xx