Seeking chemo tips and advice
Hoobies28
Member Posts: 2 ✭
Hi everyone.
I'm a 49yo single mum recently diagnosed with locally advanced Stage III ILC. I had the boob removed three weeks ago and it's healing fine. I'm now looking at six months of chemo (which was a bit of a shock tbh), then radiation and hormone therapy.
I'd be very grateful for any advice that others may have, particularly with regard to practical things that I could do to make the chemo experience a little easier.
If there are any chemo tips on this site that already exist I'd be so grateful if you could point me to them as I'm having some trouble finding relevant resources.
Thanks so much in advance.
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Comments
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Good luck with chemo. Some people find it difficult, others less so. It’s almost impossible to know until you start so some flexibility in planning is useful! I had chemo ten years ago and things have moved on - if I was starting now, I’d be asking your day oncology centre what they provide in the way of cold cap (it might preserve your hair) and ice treatment for hands and feet (it might prevent peripheral neuropathy which can affect fingers and feet). Both may extend the time of your chemo sessions, but both are worth considering.
Most people find that if they are going to
have nausea, it presents quite early in the piece. Medication will help. Fatigue may take longer and is distinct from just being tired of it all, which happens to most of us! For the record, I had no nausea and no fatigue, I worked throughout chemo. If you have a reliable person to accompany you for the first few sessions, it can be useful, just in case you feel unwell. Most people get to recognise a pattern quite soon, on and off days, and can schedule their activity accordingly.
Six months sound daunting but it passes, sometimes quicker than you would think. It’s rough medicine but for many of us it seems to have worked, so count your sessions down. At the three month mark, you’re halfway there! Best wishes.2 -
@Hoobies28 I went through the public system and I had a one on one education session with an oncology nurse which was one hour long. She gave me all the information on the chemo regime I was to be having and the necessary changes I need to make. I had a list of things to do and to avoid.
I always had a friend take me to chemo and home again as I didn't know how I would be to drive home. Also I am not sure, but I was told if an accident I was involved in occurred then I would not be covered by insurance. I am really not sure if that is the case or not, but the feeling I had at the end of a chemo session was a feeling of having very bad jet lag. These days I still describe it that way to anyone wanting a bit of an idea of how you may feel after a chemo session.
Whether you can work throughout chemo very much depends also on your own work environment and job, and flexibility on getting time off to attend chemo days. I did not work throughout my 18 months of active treatment because I was fatigued and needed to be 100% physically and mentally alert as a part of my job required me to give out medications to residents. I was not up to par to do that! If I had an office job perhaps I could have managed, but also I had to give notice to cover a shift if I couldn't attend.
Wishing you all the best, and also these days there are medications given to help with any nausea. Take care and ask any more questions here and we can give you some of our personal input as to how we coped.2 -
So sorry to see you join our exclusive club, @Hoobies28 ... the one no-one really ever thought they'd join
But you've come to the right place for useful information & support from those who've gone before you xx. Throw up ANY questions that you have & someone will jump on & supply an informative reply.
That is great that you are healing so well from your surgery ..... when you have a few minutes spare, jump onto this thread & read up on 'other' areas of the forum that you may find interesting, even funny - as we need a laugh now & then too, to get thru this shitty treatment xx
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest
I didn't 'do' chemo, but I nursed my husband thru it twice. It is 'doable' and we looked on it as the 'good poison' .... knocking off all those nasty little cells. They are much better at doing a dosage that suits individuals vs years ago, many got the standard/same dose - with some bad side effects.
You can also use the 'search' button once you find out what type of chemo you will be having, as there are a few different ones, with different side effects ..... hopefully you'll get one where you don't lose your hair or have big side effects. xx Not everyone gets really ill.
We have quite a few members in Canberra - hopefully some will jump on & chat with you - clicking on the 'three dots' to the right hand side of your name - will enable you to edit your post for up to 24hrs .... you could add 'Canberra' to it - to grab their attention!
take care, keep as busy as you can as you recover from your surgery, in between now & the start of your chemo ..... I hope you have a strong family & friend network to help you thru this - accept ANY help that is offered - be it meals, people mowing your lawn or even walking your dog (or kids to school) if you are not up to it yourself .... as people WANT to help you but often don't know how to put it into place ....
Also, check out Charlotte Tottman's Podcast (below) as she is a Breast Cancer Psychologist who was AMAZED at how much she didn't 'really' know, until she was diagnosed herself, with breast cancer xx
https://onlinenetwork.bcna.org.au/discussion/23866/podcast-series-upfront-about-breast-cancer-what-you-don-t-know-until-you-do-with-dr-charlotte-to/p1
Wishing you all the best xx2 -
I'm sorry for your diagnosis. You can do this.
This may not be a priority, but I always like to say, check if you have Income Protection Insurance.
A lot of people have this within their Superannuation. If you have this get your claim going if you want this. The claim process can take a while, but may be worth it.
I used IP, and took approx 11mths off work. My work is as a RN in a busy hospital. My diagnosis in 2020 was also the beginning of COVID. I thought it would be safer for me not to work. I also didn't have to stress about if I would be fit and reliable for a shift. At my work it is almost impossible to be replaced during a Night shift.
Hopefully you will have an education session prior to Chemo. I had an excellent session with a Chemo RN.
My treatments went quite well. Some side effects with Chemo, but all manageable. No nausea at all.
I did not lose my hair, I used Cold Cap and recommend it. It does increase the amount of time spent at Chemo by 1 1/2hrs.
I also had an Infusaport inserted for my Chemo. This allows easy access for blood tests and Chemo. This was recommended for me as my veins are not good.
I did not burn with my RT. I had Mepitel applied to the area 24/7 for my 5 weeks, and about week after.
I drove myself every day with no problem.
Everyone is different. I only mention my relatively good run, so that you don't assume the worst.
Read the literature you should be given, that will tell you of all the side effects possible. I had EVi Q sheets. They are available on the internet. They are Australian.
Report any issues to your Breast Care nurse if you are lucky enough to have one. And/or yo to our Oncologist.
Make sure you know who to contact if you have a problem. Like a fever after hours.
Have a piece of paper handy to write questions down as you think of them, to take to your next appointments. So you don't forget to ask what is important to you.
Take someone with you if possible to Drs appointments, as a second pair of ears.
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Welcome to the site, @Hoobies28. Good advice above. See also https://www.eviq.org.au/patients-and-carers/patient-information-sheets
Everyone is different, and there are different regimes, but my experience was no nausea at all. Be prepared with medication for bone pain, constipation, diarrhoea and mouth ulcers or thrush. Drink plenty of fluids and exercise, exercise, exercise (even though you don’t feel like it). You may be lucky and have minimal side effects.
Good luck.1
