I start Chemo on Friday and will be having 6 cycles in total on EC-T regime, followed by radiotherapy. I have literally been numb to this part of treatment starting until tonight and I feel like all my emotions have exploded!
I am so scared of the what ifs with all the side effects, the thought of getting struck down by germs and ending up in a bad way! I have a 3 year old and 8 year old and trying to navigate this whilst wanting to be there for them too is sending my head spinning.
Does anyone have any tips/experience on trying to stop my mind going dark and how to navigate through this?
I’ve bought all the sanitising stuff, will be pushing hygiene as I already do…wish I could just lock us all away in a bubble for the next 5 months!!
@kimmi2 hi I am in 40’s stage 3 finished summer hols with a 5 yr old we got a book from our BCN called mummy’s lump to help him understand what would be happening and also involved school to support him emotionally. He has some time with a designated teacher who is trained once a week who reads chats to him and deals with whatever crops up ~ we keep the teacher updated with anything that happens in case this crops up. For example my hair loss, I got mine shaved last month after the cold cap failed, then last week ended up in an and e due to side effects.
We have had great support from other parents at school who have collected the little man for tea and Saturdays for a break when required. We have had to use after school clubs as my fatigue is worse in the afternoon this gives me time for a nap then I can be mummy till bedtime.
First and foremost everything you are feeling is totally normal and valid. And letting the emotions out, at least for me, was always better than holding them in. This is a lot and you are allowed to feel your feels as loud or as often as you need to! This is a good place for that!
I have an 8 and 10 year old - Let the school in on what’s going on in case they notice a change in them and take the support from everyone in your village! Say yes to the meal drop off and the gas cards and the sleepover for the kids at grandmas! You can pay it forward later! And I know we hear it from everyone around us but it really is so true that kids are incredibly resilient. Best advice I can give is be real with them - when you’re feeling lousy they understand feeling sick. when you’re tired, don’t feel bad about a little extra screen time or the less healthy option for dinner - they’ll probably love it!
The germs and fear of getting sick is valid - and it can be all consuming. Whenever my fears and worries crowded my head I listened to loud music! And took that music on a walk around my living room or up the hill or just in my yard in my bare feet to touch grass and ground myself. I don’t know why that works but it does! And to give you hope I did 6 rounds of TCHP and kept teaching through all of, got sick a few times even and it was all okay! Took me longer to bounce back but other than that pretty standard! I know our journeys are all different so this is not to compare but to give you hope that it could all go right!
So many of us are moms first and the mom guilt is hard and this sucks even harder but you got this! To paraphrase my 10 year old - no matter how you feel or what you look like through this whole thing, you’ll still be mommy! And it will surprise you how true that is!
Thank you for replying! School and nursery are aware of everything going on and have been absolutely amazing!
I am so glad you have found the support to get you through. It is so tough and I think it is the unknown that brings the most fear for me at the minute. I know everyone will react differently and be on different treatments but to hear others first hand experiences brings more peace to me than scrolling the Internet for what I should be doing. Xx
Thank you for sharing this with me. Up till now I have managed to keep myself somewhat level headed through surgery and recovery and this felt like a continuation of that…until tonight!
Sat bathing my 3 year old and the fear/what ifs/will I still be able to do these things just flooded my head and I broke down. Then I couldn’t stop the thoughts of what if something goes wrong and so on!!
I really appreciate you letting me in on some of your experiences. School and nursery have been made aware and I cannot fault how they have been so far, which was a huge weight off my shoulders.
I know no two people will be exactly the same but to hear positive stories to replace the awful noise in my head is such a massive help!
I am so glad you managed to navigate through this as a mum and also work too, to me that sounds super impressive!! And thank you to your 10 year old, that is spot on…I will keep that in mind xx
I remember feeling that way - chemo is just so foreign. Surgery seems more straight forward. And it plays with your head knowing you feel completely fine but you are willingly going to make yourself feel terrible! It’s absolutely ridiculous!
Feel free to reach out anytime you go from level-headed to a complete basket case in 6 seconds flat! It’s all part of our charm
Hi , I was very worried about catching bugs and things during chemo. I mentioned my son had a cold…or something and I was worried about catching it to my chemo nurse, and was told they don’t worry about colds, it’s the bacterial side they worry about.
As a mum, we sometimes eat our child’s left overs…I.e Pizza or jacket potato skins…that is something I stopped doing. If it was on their plate, I now won’t touch it. I won’t share a glass or drink with them anymore. It really does help limit exposure to things you don’t want to catch. I didn’t share hand towels, especially when preparing my own food. I would also make my sandwich on the plate I was going to use as hubby would stick his phone on the bread board…so I felt I needed to take precautions to protect myself. I may have over thought this lol
I also wore face masks in busy spaces and in shops etc. I take my own straw if I plan on having a cold drink out and also antibacterial wipes to wipe bottles, cans etc, or my hands if needed.
I never caught any bugs during chemo.
As a mum, we worry about everything don’t we? Kids are very resilient and just take things in their stride. You know your children and how to talk to them in a way they will understand.
Big hugs for you
Just wanted to pop on and say good luck on your first round of chemo today. The first one can be so daunting but the nurses are wonderful and before you know it you’ll be a pro! I hope everything goes smoothly for you. Tip of the day is to hydrate and get some extra snuggles from those little ones this evening
Thank you everyone for the messages! Day 1 done yesterday, not feeling too bad. Just a bit of a sickly head, however I did do the cold cap so wondering if that has a hand in that along with the chemo meds. All in all feeling a lot less worried and anxious. Now to see how I fair with germs over the next few weeks before round 2 x
Just popping on to see how things are and share my experience…I have just finished 7 rounds of chemo 3 x EC & 4 x Docetaxel with a 13 and 10 year old. Yes there have been days I’ve felt tired but I haven’t caught any infections and have pretty much carried on as normal. The end feels like a lifetime away and now I’m a week post last chemo I can say u will get there & u will smash it. I never thought I would but u will and u will be their hero xxxx
xx
