MBC with young children

[Toomanyquestions]

I’m stuck in bed and can’t care for my children age 5 and 8. Their little faces are breaking my heart. Is there anyone else here in the same situation?

[HopefulB]

Yes a number of us have small children and have been through some of that stress. It is so so hard. I am not currently bedridden but I can’t do everything she wishes I could do so I know the emotions. I try to remember that kids are resilient. And I would like to think that our stedy love is the most important thing - and you can tell them how much you love them even in bed.

[Toomanyquestions in reply to HopefulB]

Thanks for your reply. Does your daughter know your situation? I haven’t told either of mine too many details. It’s so hard when you don’t know how long etc X

[HopefulB in reply to Toomanyquestions]

One of the other moms on the facebook group (have you joined there - very active and very helpful) helped me by urging me to live in the positive - meaning focus on the fact that there are a number of treatments out there now and more coming. Obviously none of us knows in what direction our cancers will go -but it really helped me to just adopt the positive view that solutions are around the corner. Something to consider.

As far as telling my child - nope. Not doing it. Can't do it. Won't do it for now. She knows I had a leg injury and surgery for my leg (the metastasis in my femur bone required that a rod be placed in my femur.) That has been plenty for both of us!

[Toomanyquestions in reply to HopefulB]

Yes I feel the same. I had to have both my femurs pinned 6 weeks ago. How long did you take to recover? Is it just in your bones? I joined a Facebook group but there was so much despair and I have too much of my own! I like your idea of being positive about treatment options. I’m on Ibrance and it’s making me feel dreadful X

[HopefulB in reply to Toomanyquestions]

Sorry - yes you are right there is a lot of despair (and death) in the facebook group. But I ended up direct messaging anyone with young children and trying to get their advice - and that is how I chatted with this one mother of young kids.

For now MBC is just in my bones - femur, sacrum and sternum. My surgery was 1/15 and I have only just recently started to feel better - but it has also helped that I started exercising again (easy cycling.) What are your ibrance side effects? I am on Ibrance, Letrozole and Xgeva. I got super sick last month when my white blood cells were down and my daughter was sick . I had to take myself to the hospital though luckily they didn't need to admit me. But I am otherwise feeling ok.

Were you diagnosed de novo or did you have breast cancer before. I ask only because having been through chemo for breast cancer has numbed me a bit (in a good way) to the side effects of these drugs. And I am so thrilled to have my hair that I would almost put up with anything else... almost?

[Toomanyquestions in reply to HopefulB]

I was diagnosed in 2016, stage 3 but no one told me the stage. I did x6 chemo and 3 weeks radiation. I was fit and healthy for 2yrs. Then I got a pain in my hip, fell over ended up in A&E, the scan showed mets to my cranium, spine, pelvis and femurs. Eventually it was spotted in my lungs and liver. Bit of a shock!!! That was in November. Started Ibrance in January and have been wiped out with fatigue X

[Toomanyquestions in reply to HopefulB]

PS How long after your first time did it come back? X

[HopefulB in reply to Toomanyquestions]

Had my breast cancer in 2014 - aggressive stage two her2- and er/pr positive. Had lumpectomy, 8 chemo sessions and 35 radiations. Was limping from late November on but only got diagnosed dec 28 and confirmed early jan.

[Gwennie123]

Where do you live. Perhaps one of us could round up some help?

[Cshipley123]

I was in the same situation the first round of breast cancer in 2010. My son was in kindergarten and my daughter was in 4th grade. I told them after surgery that I had breast cancer. They really didn't understand it. It was so hard not being able to go and do everything I wanted to with them. I did what I could. They just knew that the medicine made me sick and very tired. Now that I have MCB they are in 8th and 12th grade. I stay away from the "stage 4" words as they would freak out. I explained to them it's more like a chronic illness that I have to treat. I really feel for you because it's so hard with young children and knowing what to say and what not to say. I hope you start to feel better soon!

[Toomanyquestions in reply to Cshipley123]

Oh I feel for you too. Are you able to function normally on your medications? As in do you cook for them and are you able to play with them etc? X

[Cshipley123]

I still work as a academic coach (teacher) in a school system. I was on ibrance and it took a few months to adjust. It stopped working after about a year. I'm now on Xolada pills (chemo) and it's challenging. They lowered the dose and this round is much better. I do things with my kids but I am mindful of my limits. My husband does the cooking. Some days the smell of food bothers me. I want to keep working as I feel it keeps my mind off of things. With my job I focus on teachers and don't have a class of students. I could never teacher a group of 25 and take these types of medicine! Hopefully you will adjust to ibrance and feel better. After about 3 rounds I felt fine.

[Toomanyquestions in reply to Cshipley123]

Wow well there’s hope for me then. I’m on my second round. Are you just mets to bones? I’m bones, lungs and liver. I’m on my week off and I’m feeling terrible, no energy at all. It’s my first full cycle as I had to stop after a week on the first 3. I can’t do anything for/with my children at the moment and I feel guilty X

[Cshipley123]

I have bones (my back), liver, and some pelvis spots. The liver is what the ibrance stopped working on. Everything else responded great. I did have fluid in my lungs, but once it was drained it was fine (so far!). I felt horrible after my first cycle of ibrance. I had to stop early and take an extra week off. After that it slowly started getting better. I understand feeling guilty. It's hard but your children will understand in the long run. My son when he was in kindergarten loved doing things for me when I felt bad. He would get me a snack or hot tea. I think it made him feel like he was helping me, which he really was! We would do movie night in with the family and watch old star wars movies since I didn't feel like going out.

[Hidden]

Hi Ellie,

I don't have children, so can't say I understand your situation. But what I will say is that I have been in your children's position. My mum was chronically ill for years during my childhood. It started off with high blood pressure, then we learned she had atrial fibrillation, followed by Non-Hodgkin's Lymphoma. I can't say it was easy having a mum who had health problems, but I loved her and I do not regret helping her when she needed extra support.

I think parents have a tendency to beat themselves up when they have limitations and can't do the things other parents do with their children, but I bet your children love you and cherish you. I'm sure they don't resent you. If you don't have the energy to play games with them could you perhaps read them a bedtime story or just be on hand to tuck them in if you do not have the energy to do that? Or you can have them climb into bed with you for cuddles at bedtime. There are so many ways you can show you love your children even though you are feeling inadequate. It's not your fault and I am sure they don't blame you either.

Sophie ❤

[Toomanyquestions in reply to Hidden]

Thank you Sophie, you always have such kind words and it’s lovely to hear from you. Is it a strange question to ask if your mother was happy? I’ve really tried to hide my sadness from my children but these past few weeks adjusting to the antidepressants they’ve definitely seen a difference in me. I’m not the same person as I was before my diagnosis. I’m really hoping I can get back to me but it’s feeling quite impossible at the moment X

[Hidden in reply to Toomanyquestions]

You're welcome, Ellie. Truthfully? No, I don't think my mum was happy at times. She had a hard time dealing with her health and family responsibilities. Looking back, I think she suffered from depression, but I was a child so didn't know how to help her with how she felt. But as I got older I could help her in practical ways such as taking her to the doctor's, doing her washing, that sort of thing. I cherish my memories of my mum.

You won't be the same person you were before your diagnosis. None of us will be. But hopefully the anti-depressants will soon start to work for you and make you feel better.

Sophie ❤

[Toomanyquestions in reply to Hidden]

Thank you so much for your words. I hope I can stay around long enough for them to have memories to cherish too. X

[Toomanyquestions in reply to Toomanyquestions]

And another one ... (I’ve not watched it yet) m.youtube.com/watch?v=p8zeh...(Not working as expected?)

[Hidden in reply to Toomanyquestions]

You're welcome, Ellie! You must have hope for the future. Please don't give up. Metastatic breast cancer is no longer the death sentence it once was. Yes, some women do die very quickly after their diagnosis. But for the most part, if we are having treatment and our condition is stabilised then that is good news! Don't forget that there are new treatments coming out all the time. So just as diabetics, epileptics and those with HIV/AIDS can live for many years with their condition, so can we!

Sophie ❤

[Toomanyquestions in reply to Hidden]

I can’t sleep! Found this video that you might like m.youtube.com/watch?v=7ciVt...(Not working as expected?)

[Hidden in reply to Toomanyquestions]

Hi Ellie!

I just watched this video. Thank you so much for sharing it. I am already doing some of these things. I use essential oils, but hadn't considered rubbing them onto my breast or ingesting them. I took some notes! There is always room for improvement.

Sophie ❤