Chemo

Hi Carolyn, I too am hopefully starting chemo in a few weeks and trying to find ways that I can be best prepared. I know we will all experience different effects and every bodies advice and top tips is helping with being prepared. 

I hope your first round of chemo goes well. 

D x

You’ll not be a rubbish mum at any point, it’s amazing the reserves you pull out for your kids. Ok my daughter is a little older, 12, the first time I had BC she was 4, in reception class. You know your kids better than anyone and always go with your gut instinct but I can tell you my experience. When she was 4 I didn’t need chemo, had a lumpectomy and radiotherapy. I got away with saying I had a ‘bad lump’ that needed to come out and that I’d be fine after treatment. She readily accepted that. Having chemo though, for me was a game changer and it doesn’t help that she’s older and a bit wiser! People genuinely say ridiculous things in front of your kids even if they think they’re being covert, the well meaning, you’ve got this, the slightly tearful good luck, that arm squeeze they give you, if anyone can do this …….. this all signals to your child something is really wrong here. They overhear conversations you don’t think they’re listening to or they’re upstairs, etc. Then you loose your hair and that’s ALL hair for most of us, and you gave some days where you’re not great and you’ve all these hospital appointments etc. Their own peers say silly things, kids filter even less, my auntie went bald, she had cancer and died! You get the picture. My worry was if my daughter didn’t trust me implicitly, she’d fill in her own blanks and scare herself. So I told her the truth by and large, I left out details of grades and aggressive nature, etc. I told her I had breast cancer, I’d need chemo and a mastectomy and that I was going to be poorly on and off for a while but that I was going to be ok, the doctors said if I did the treatment I’d be ok and I matter what anyone says, she would be the first to know any changes to that and I would always be honest with her, it wasn’t going to be easy but it was going to be ok. This worked for me. Because she felt comfortable that she was informed and that stopped her from being terrified. I remember those early days and not wanting to frighten them. Others on here haven’t told their kids everything though so you’ll hopefully also get to hear their thoughts for balance. As with all of this we have different experiences x

Thank you.

I totally get what you mean with people saying things in front of them. People often seem to think young equates to being unable to hear and just start talking away with them in the room- drives me mad.

I have told them the drain is to get rid of fluid build up under my arm but am still not sure what to say around chemo as I’m praying the cold cap works.  I just don’t want to be in a position where they ask if it will be ok and I can’t promise them yes (because I can’t) and don’t want to lie. It would break their hearts and they’d never stop worrying.  I just feel so negative myself after being told it’s in my lymph nodes which perhaps isn’t rational. I’d been told at biopsy that they were clear and it was grade two and then after surgery it was found in all four sentinel nodes and upgraded to a 3…it just really knocked for 6. I’m still awaiting the pathology of the node clearance.

I will have s chat to my nurse about having the conversation with them as I also worry about a parent at school realising and saying in front of their own children. 

xx

Thank you - I hope yours goes well too.

It's great to be part of this group I'm getting lots of really useful advice and tips.

Good luck!

Cx

Thank you. I will ask why I’m not having weekly as I have read studies that suggest the efficacy is better this way. I don’t mind if there is a reason, but the blanket approach doesn’t seem right….which makes me think it’s money related. 

Definitely talk it through with a nurse, I did too, talk it through with Macmillan as well, get those view points to help you decide and remember, ultimately, it’s your decision and you know your kids best. Also, word of warning, I didn’t cold cap but. You will loose some hair, it does thin to varying degrees with people and you’ve more chance of keeping it if it’s not long. All the best xx

Hi Carolyn321

Glad I could help. I lost my hair after my second infusion. While I was upset at first I did get used to having a bald head and I wore turbans whenever I needed to go anywhere.

Dx

Hi Hel39

You aren't a rubbish mum - there is so much to process.

I have a ten year old and we told him as soon as i had a treatment plan in place. At that time the chemo regime was one where I was likely to lose my hair so for that reason we told him (in the event they changed the chemo and I didn't lose my hair). My husband was dead against telling him it was cancer and I listened to him but I wish we had used the word cancer. He listened to all we said - that mum was poorly and she is going to have treatment that means she might lose her hair and might be a bit grumpy and sad sometimes. He didn't say much but we maid sure we went straight out and did something as a family to keep things normal. 

A couple of days later he came to and said he had a question - will I be poorly for the rest of my life? And the only way I could respond which was the only truth I had was I hoped that I would get better. He seemed satisfied with that and has said nothing since 3 months on. My worry is that someone will let slip that it is cancer. My husbands family all know and I just feel uncomfortable that he doesn't. It does seem like he us left out of the conversation. I would suggest that if you can fund a way to use the word cancer in an age appropriate way with your children that you do. 

And do use the school mums. I had chemo yesterday and asked a mum in yhe village to take my son to school this morning and she infected to bring him home. I've only told a couple of mums. I havent told znf if my son's friends mums. IM dreading up bedause he has a basketball tournament next week and face has changed even though I've kept my hair. I think I look ill but if course others will be too polite to say anything. 

Anyway - good luck with telling your children. Speak to the nurses and others who can support you in how to tell your children.

You have this - you are not a rubbish mother x

Thank you. My partner, likewise, is very reluctant to use the ‘c’ word and i’m terrified they’ll hear it from someone else. 

I will be on EC chemo, which causes hair loss, but have spoken to several women who kept enough to hide it. It’s all so hard to know what to do and I can’t stand to see them sad. 

xx

Really hard, I agree with the others about waiting until you know your plan and you’ve had a few different experiences there to draw on. Try and remember that your cancer is treatable and your prognosis is a good one, that’s what I told my daughter. She has coped remarkably well, obviously it’s had some horrible moments in there, but we’ve also bonded through the experience too. You’ve no hurry to make any decisions, see how you feel over the next few days x