Feeling overwhelmed

I feel the same but I am a little in reverse. I have had the 12 weekly paclataxil but just started EC and mastectomy, radiotherapy and further immunotherapy and chemotherapy to follow. It’s a long journey but look back at how far you’ve come rather than looking at what’s left.

i am really struggling now I have started EC. How are you finding it?

well done for getting through so much already, you’re doing great and feeling like this is normal.

I spoke to my BCN today and she was a great support. Have you tried calling MacMillan? Or the 24/7 number? I have a MacMillan buddy too which is really helpful speaking to someone who has gone through it !

sending a huge hug your way! You’ve got this! Xx

Thank you for replying. I have found EC really hard. I’ve really struggled with it. I have contacted Macmillan and they are arranging a buddy to contact me. I find that I’m ok then suddenly I have a bad patch where it feels like I’m wading thru treacle. I’m going to ask my bcn for more support to get me thru these next few months. How did you find paclitaxal? I’m happy for you to dm me if you have any questions about mastectomy. We are both doing well and I really appreciate your reply x

You’re welcome!

how many EC have you had? And what side effects? I have had 2 so far and 2 more to go. Really fatigued and struggling to eat and drink this time with GI upset and mucositis. No energy at all. I’m lightheaded and my vision funny like blurry and I keep getting auras like a migraine. I was in hospital 4 days after the first one with fever and zero neutrophils but I don’t think I felt this bad! I am worried the next 2 will be cumulative and worse still and if I can cope. My gp has discussed anxiety meds but I worry about side effects of those too?!

I found paclataxil much easier and I had 12 weekly sessions alongside carboplatin and immunotherapy. I mostly managed to continue as usual with one day a week a bit more tired (but could still get out!).

how was mastectomy?

I would love to keep in touch and DM and support each other but don’t know how to do that?! Happy to answer more questions about paclitaxil too! 

well done for getting so far!! Xx

Have you contacted the 24/7 team? It might be worth them doing a blood test to check your levels. My symptoms have been weakness, I’ve had 2 cycles and I’ve had a job to walk to the bathroom where I’m so weak. I’ve also had oral thrush and very loose bowels but only once a day! I find days 1-3 like a bad hangover, days 4-6 I’m crying and feel very low and then the weakness kicks in on day 6-day 10 then I gradually get stronger. The nasty injections don’t help either as they cause back ache. I’ve sent you a friend request on here. Good to hear the paclitaxal was ok. Did you wear cold gloves? The mastectomy was no problem up to chemo! I’ll  dm you lots of tips x

Mastectomy tips 

def get a heart shaped pillow for under your arm

do the eexercises exactly as they say

theyll give you a drain bag, wear it under your dressing gown

I only needed paracetamol as wasn’t too painful 

get wet wipes as you won’t be able to  shower for a while 

Asda sell the best mastectomy bras but for the first 2/3 weeks I never wore a bra. The nurse will give you a falsie. But contact knitted knockers, they are great x

I’m contacting them loads but they just keep saying they don’t need to do bloods or anything as it’s just side effects!

ive been feeling v low the last few days and I had my second one a week ago.

i have pegfilgrastin on the day of my chemo which they said is a one off alternative to you having to do it daily and I’ve had no pain so maybe you could ask about that?

yeah I wore cold gloves and socks and didn’t suffer any neuropathy!

mastectomy tips would be great. Especially bras/prosthesis etc though I am having a temporary small  implant in I think in preparation for a delayed diepp construction.

Thankyou! How long was your recovery? Before you could do things? And drive? X

I was pretty mobile after 2 weeks and drove around 4 weeks. I had a mastectomy on left side so I struggled with handbrake that’s why I didn’t drive for 4 weeks x

The feeling low is how I feel from day 4, they say it’s a steroid crash of emotions. It’s horrible. All I can say it that it does lift so don’t think you’ll feel like this forever. I’m going to ask if I can do a slow taper off steroids. Thanks for info on injection I’ll ask tomorrow about it. I would phone your bcn tomorrow. I’ve got my last EC next week. I’m having 3. They reduced the dose on number 2 but didn’t make any difference x

I really hope tomorrow you’ll be feeling a bit better. I found it took til day 10 til I felt stronger and then each day got better. You’re doing so well x