Emotions

I have had different experience but I wanted to say hi…..it is incredibly hard to even put into words how you feel at such challenging times…..try not to worry …be honest…you are going to feel rubbish ..we all do….regardless of diagnosis! Deep breath! It does get better….it really does! My advice is be honest with the kids…they then understand and believe you! It is hard to talk….but hold your head high and try….if you don’t tell them…they will fill the unknown with Google….and that is not good! Please feel reassured that so many have been through this challenge…my go to is ‘be honest, trust your kids, open conversations’ 

Generally full of crap….but hope this helps! 

Thankfully we were honest from the start so I agree this is totally the way to go. I was a total mess before treatment but thankfully had a support network. I guess my issue is I don't know how to feel at the minute, I'm reallyupanx down. Wishing you all the very best. Thanks for replying x

Hi Mandi,

I'm in the same place as you regarding treatment. I was diagnosed in March, had the neo adjuvant treatment and mastectomy in August with no lymph node involvement and good margins. 

Like you I'm now on Kadcyla. It's definitely a weird time. The cancer is gone and I just want my normal life back except I have to plan my life around Kadcyla until next July. I'm grateful for the treatment but I'm in limbo.

Have you spoken to your BCN? They will be able to refer you to a psychologist if they haven't already. It's a lot to handle, starting the year with the diagnosis, getting through all that horrible chemo, trying to stay upbeat, having a mastectomy then waiting for the results, now Kadcyla. You've been through an awful lot this year, we both have. It's been a scary time. I think anyone would struggle to cope and it sounds like you've done brilliantly so far! A chat with a psychologist might help you to process all that you've dealt with. They've definitely helped me.

No idea whether any of this is of any use but just wanted to reach out and let you know that you're not alone. This stupid illness is a rollercoaster of emotions but talking helps.

Have a great day! 

Love,

Mads

Hi Mads, 

Thankyou,  it's good to know I'm not alone in how I'm feeling and you've summed up exactly how I feel. I will speak to them about a psychologist at my next appointment, good idea. 

How have you been on kadcyla? I'm hoping to return to work in January (I'm a nurse) but on reduced hours, I'm hoping I will be able to. Do you get lots of side effects? 

Sending uou vest wishes and positive vibes,

Mandi x

Hi Mandi,

I've had one round of Kadcyla so far, I've got the next one on Wednesday. It's definitely less obnoxious than Docetaxcel and Carboplatin.

I was zombified for the first few days and a bit sickly but no vomiting and I've had a weird mouth taste but not as severe as on the other chemo. I know that doesn't sound great but it really is better than before.  Hopefully you will avoid all the side effects! Fingers crossed for you!

I went back to work on a phased return before starting Kadcyla. I had a treatment on a Wednesday and made a point of going in on the Monday after, mainly to see whether I was able to work at that point in the cycle. I definitely couldn't deal with anything complex but I was able to cope with about three and a half hours. I felt a bit floaty walking home for the first three days and immediately crashed out on the sofa!

Like 'normal' chemo, as the days went on I got back to full function. I'm expecting this next cycle to go the same way. Mind you, I'm about to start the Tamoxifen! Who knows what that'll do! 

I guess by January you'll have a clearer idea of how the treatment affects you and how you can work around it. As long as your manager is able to be flexible and supportive you'll be fine. 

Good luck with your Kadcyla, when do you start?

Sorry for the essay! I just can't hold it in! Lol!

Love and light!

Mads

Hi Mads,

I start my first kadcyla on Friday. I've been on tamoxifen for a few weeks now, itching and insomnia are the worst, also get joint pain still. Good luck with yours xxx

Hi Mandi,

Itching, insomnia and joint pain?! I knew I was being a smarty pants thinking I was getting off lightly!! Oh love, how rubbish!! 

Good luck on Friday, I'll be thinking of you. 

Mads xxx

Thanks Mads. I'm going into it with a positive mind set and telling myself I won't have side effects, hopefully that will help. If you do get itching get some cetraben lotion, it's really helped mine. Xx

Hi Mandi,

Just wanted to check in with you and see how you're doing after Friday? 

I seem to have had it a bit easier this time although the steroids probably haven't completely worn off yet! 

Hope you're feeling ok and avoiding any side effects. 

Look after yourself lovely,

Love,

Mads xx

Hi Mads, I think I pressed the flag to moderator button on your last message by mistake when I didn't have my glasses on and my reply wouldn't send and can't see your comment, sorry. I didn't have my kadcyla as I was admitted from clinic two days earlier with a raging temperature and infection?where! I'm still in hospital on IV antibiotics. Hope you are okay and my original reply gets to you lovely lady xxx