Thank you everyone. I think when it comes to it i will be signed off until after radiotherapy. I dont want to work through it as even if i can manage physically it will be very disruptive for the pupils and I could get ill too. Best thing is to get through it at home. Thanks all. I feel better knowing that you all understand. I hope youāre all doing well. Xxx
We are here for you when you need us and donāt forget to join the monthly chemo starters group.
Thank you @naughty_boob. As soon as i know when i will join but reckon the speed things are going itāll be August maybe. X
@bluesatsuma I commented before but have been thinking more about this and honestly, I cannot imagine making any full time commitment to anything during cancer treatment. Iāve had my surgery, recovered from that and then am about to have my 5th cycle of 6 cycles of chemo.
The 1st cycle, I was incapable of most parts of life, let alone work. I am self employed so I did rock up and see some clients but it was literally just to show my face and make them think that everything was business as usual. I remember having to do payroll in that cycle (usually takes me an hour). It took me 6 hours because my brain just did not work. At all.
The useless brain has become even more useless throughout.
2nd and 3rd cycles of EC were better in most ways and I got a full one good week in the three week cycle. By good week, I mean that I could actually help with school runs and could maybe hoover them house or do some washing. I was also able to go to work for maybe one or two days in that week. Iām someone who does more than they should too.
My fourth cycle was a change of drug to Docetaxel. I have spent nearly a week of that in isolation for neutropenic sepsis. Itās not uncommon either. Iām now on bed rest to try and get my liver results and white blood cells in a fit state to be allowed the next chemo.
Itās literally a full time job getting well enough for the next chemo. Stress screws up white blood cells too so stress is literally the last thing you need.
What Iām trying to point out is that it is medically necessary for you to be able to recover. You need to not just cope and scrape through, you have to bounce back between cycles or they will not permit you to have your drugs because itās dangerous if youāre not well enough.
A trend I see is women pushing to still be everything to everyone while battling cancer. I did it and I could keep it up for maybe one or two cycles of chemo but your body will kick your ass for trying.
You are not being weak in not being able to teach full time. Itās simply just not good for your health in any way, shape and form and you absolutely should not be made to feel like that is inadequate. Itās a wildly unrealistic expectation.
You need to beat cancer. That is your new job. It is a very boring job and a very frustrating one. But itās worth doing properly with your full focus. Itās actually surprisingly rubbish lying in bed a lot and watching TV.
X
Hi @swk1981. Thanks for your detailed reply and you really do speak for most other peopleās experience I expect. It sounds gruelling and although im nervous, I am raring to get started and get cancer done! My colleague was out of line really. She doesnāt know enough about it all and I plan to stay off totally. My husband is cross about the comments and feels I should complain, but I donāt intend to. It was coming from a good place, out of ignorance, and they recognised that I am someone who likes to work. Perhaps they thought Iād like to keep my mind busyā¦it really is busy enough right now! Thank you and best wishes for the last cycle xxx
I painted a very awful picture there but I just wanted you to see how consuming breast cancer treatment is. There are also some of the most beautiful moments ever in this giant sh*t show and some humbling lessons which you need time to ruminate on and process. Your entire outlook on a lot of things may change and itās really not all bad at all.
I have three children (9, 12, 15) and at times Iāve all the patience in the world but chemo ravages your brain and you can forget your own kids name or the word chair or dog. In those moments, you can get quite frustrated. Other times you can feel utterly impatient and angry with the world. The next minute youāll be the Dalai Lama. Itās a wiggly old road and you need the headspace to have patience with yourself. There are times where I feel so intolerant of my husband and kids and I love them. 30 children who arenāt yours would be the ultimate sensory overload at times.
Honestly though, the little nuggets of wisdom you get over the coming months are really quite amazing. Iāve taken the approach that this is my ultimate lesson as I need to pay attention because evidently, the way I was living before wasnāt working for my body and itās kicking my ass to pay attention!
I agree about not complaining. Put your energy elsewhere. You have many more stupid comments to come from people in the coming months like āThank god youāre so strong. Youāll absolutely beat cancer!ā or āThis keto-diet can cure cancer better than chemo!ā. We should really create a Breast Cancer Bingo of comments people make so at least we can internally chuckle at them. X
Youāll probably meet a lot of well meaning but ignorant people as you go through this. I think itās very hard to work whilst undergoing chemo unless you happen to have an exceptionally flexible job where you can work from home/set your own hours and you get lucky with side effects. I had 2 hospitalisations, once with neutropenic sepsis and once with possible c diff but my body just decided to pack it in and make me go to A&E on Friday, stay in at the weekend and go back to working on Monday because it clearly didnāt want to make me miss work. If I had been in a situation like yours I wouldnāt have even considered working.
@swk1981 thank you. I think my dalai llama moments will definitely be a welcome break from my staring into space moments! My kids are 9, 11 and 15, so virtually the same ages. I wondered how theyāve coped with your chemo? Iām not sure my 3 know whatās around the corner but my 2 older ones are anxious about my health. Good luck on the last part of chemo xxx
Thank you @kartoffel. I definitely think you are right. Iād probably get do many infections off the pupils and would end up in hospital too. I will be following everyoneās advice. Hoping i can still manage some days out eith my family though xxx
The kids have done great. We went for full disclosure but with āUnless something goes wrong, this should all end okayā rather than giving them exact percentages (80-85% cure rate). They know every detail of neutrophil counts and liver bone tests and have a real interest in it. The surgery wasnāt bothersome for them but the first chemo was a little scary as theyād never seen me wiped like that. I let them watch the injections to numb them to it and theyāre a bunch of gruesome weirdos so theyāre fine with it.
Youāre still at the raw and scary bit. It gets easier with the kids as it goes on. Thank god it was Y10 for the eldest though and not Y11!!!
This has become their normal and weāve managed plenty of days out during EC Chemo. Went to Badminton Horse Trials, bowling, horse racing, weddings. All either on steroid days or last week of the cycle days. Day 3-14 have not involved days out really at all!
But they come and lie in bed and watch movies and I have more time to listen than ever before and there are upsides to that.
I have a massive puzzle and puzzle roll that we pull out and do. Iāve become the housewife type Mum that Iāve never been able to be.
The baldness was the hardest moment for them I think. I shaved at about Day 20 of first cycle as hair was shedding so fast and I did three bunches and they each cut one and then they helped the hairdresser shave it. All they did was laugh about it and make it fun. It softened the whole thing by involving them.
My girls have helped choose endless head scarves and make it a fun fashion mission while my son (15) makes Gollum jokes and loves rubbing the soft baby hair that is growing in.
None of them are embarrassed about their little bald Mummy at all. I was surprised at that. I would have been if Iām honest. Oldest and youngest have told more friends while middle is more private about things. I only told parents in 9 year olds class as I wanted the party line from parents to be āMaggieās Mummy has cancer but itās curable!ā. Havenāt really told parents (except ones Iām friends with) in the Y8 and Y10 ones as I wanted them to be choose which kids would know.
Theyāve grown up. Theyāre nicer to each other and more understanding of the limitations of what we can and canāt do. I didnāt want them to learn this lesson this way but theyāve cut the crap a LOT which isnāt a bad thing. Their knowledge of science is through the roof now and it seems to give them security to understand that EC kills cells while Docetaxel affects cells differently so that our own bodies kill the cells. They understand why I have the side effects I do and that radiotherapy may burn me after the summer.
Not everyone agrees with full disclosure but it works for us. I have told my girls that they will be scanned earlier than most women to prevent it getting to the stage that mine did (lymph nodes) and that Iām having genetic tests (unlikely to come back as anything given family history) but itās to keep them safe and prevent them ever needing the whole shebang like me.
Itās not a lesson we want for them but theyāre nicer people for it so itās really not all bad xx
Thank you @swk1981. Thatās a fantastic help. Weāve also told our 3 the full details and they have been worried but accepting. Initially it was thought Iād need surgery and radiotherapy plus tamoxifen, but there were lymph nodes involvedā¦only 2, so still not 100% if i will need chemo, but surgeon says it will be more likely as Iām in my 40s. My daughter will be in y11 and my anxious middle child is starting y7, so Iām keen to keep things as normal as possible. However, it will be good to be at home helping them more. You have made me feel better aboit losing my hair too. Thank you and good luck with your continuing treatments.
I think if there are lymph nodes then thereās generally chemo. Iām assuming yours is ER+ if youāre having Tamoxifen. I had ER+ 8/8 HER2 -ve so it was mastectomy/chemo/radio/ovarian suppression and Tamoxifen. Theyāll possibly let me have ovaries removed though to prevent me needing ovarian suppression which Iād prefer. Iām 43 so similar to you. Chemo has killed ovaries and, so far, the menopause but is fine. Helps when you have chemo making you feel rubbish as menopause seems like the easy bit! Apparently periods will come back though after chemo, hence the ovarian suppression. X
Yes er+ her2-. I had a lumpectomy and slnd, then alnd and cavity shave and then another cavity shave. If the cancer hasnāt all been removed this time, i will need a masectomy. I think theyāve got all the IDC out but they keep finding dcis. 2 lymph nodes positive with 4mm and 3mm of invasive in. The waiting is hard for results. Iām hoping that once this last surgery results are available, that I will finally leave my lovely surgeon for oncology. I wonder if Iāll need ovarian suppression too? I am 46 but most definitely perimenopausal. Tume will tell I guess. Xxx
It would be very unusual to not be given chemo with two lymph nodes positive.
Usually for our cancer, itās the full shebang once itās into the nodes. I think thatās a good thing as chemo is very effective on it.
Iāve been advised of Tamoxifen AND ovarian suppression due to age but am opting for a laparoscopic ovarian removal and Tamoxifen since I donāt want to be on two drugs and have to stop one to figure out side effects and would rather remove ovaries from the equation since the buggers were trying to kill me. So then just Tamoxifen for me and theyāll let me have it forever which Iām grateful for.
Any results back yet to help you know the next steps. Honestly, the mastectomy isnāt a bad option. Mine is easy and Iāll reconstruct next year after radiotherapy finishes this year and I have my strength back. Onwards and upwards. Weāre lucky to be able to say that! X
Thanks @swk1981. I think you are right but i still have to wait 10 days for next appointment. Its with the surgeon again though so I will then wait for an oncologist appointment x