Help please...

I've just had 3rd cycle EC. I had been positive but the end seems so far away and I feel like shit.

Thanks for the encouragement. Only one more EC and then it's on to pacitaxel. I am starting to worry about the surgery now... I am having a mastectomy and will likely be minimum 2 surgeries. Need to stay in the moment. It's so hard. I'm so sick of all of this.

Hi LKM,

Sending you much understanding & encouraging hugs, this was by far the worst stage for me. I had zoledronic acid infusions every 6 weeks so that fell on the 1st & 3rd EC & definitely added to the impact, for me.
Hang in there (not that there’s much choice)! I hit a real low after my 3rd EC. I felt so rubbish, down & detached from things &, like you say, the end felt like too far away. I spoke/cried to my oncologist as I felt a bit desperate & he reassured me that it wasn’t me, it was the drugs & that he had every confidence that Paclitaxel would be easier, emotionally & physically. He was right! Also, a fellow chemo patient got wind that I was having a bit of a meltdown & sent a message that she’d been ready to walk away from it all at about the same stage of EC but was now cruising (crap cruise!) through Paclitaxel. Bless her! It definitely helped to know I wasn’t the only one losing the plot.
Also, my Paclitaxel was weekly x 12 & although you sort of feel like you’re doing nothing but chemo, what with bloods etc, you might feel a bit more like yourself & soon find yourself ticking off the weeks. I got a huge head spin from the Piriton infusion, but apart from that & some fuzziness in my fingers & feet it was much more manageable.

I had a mastectomy & lymph node clearance as well as a minor surgery to put a stent in my ureter (problems uncovered by the ct scan) to help my kidney to drain properly during chemo. I know we’re all different & are affected differently, but I can honestly say that the mastectomy surgery & recovery for me was painless. I went down at about 5, was out by 8 & went home the next morning with a ‘softie’ in & my drains in a tote bag (every ‘party bag’ during this has been officially PANTS). I don’t think I’d wanted to face up to what was happening so hadn’t asked many useful questions. I was a bit surprised (duh!) that the node clearance left me with a weird numbness in my upper arm & in the scar area, but otherwise it was ok. I had a few weeks of problems with seroma but there’s the upside to the numbness as draining it was painless too…YAY ‘cause I’m no hero.

I’m banging on again, but you’re right, it is hard. But you’re doing it & only one more EC to go. 
You don’t feel like you’ve got this, but you have. I didn’t think I did, & I did. And as I said, I’m no hero. When you feel like a complete fruit loop, remember lots of people love fruit loops!

Jo xx

Thank you Jo. I really needed that! Just gone my injection and feeling like poo. I'll make it through.

L xx

Hi RJK

How are you doing?

I can only speak from my own experience as I don't think I have a great deal of knowledge. 

I can so understand how you're feeling, it was so utterly surreal , and even now it still feels almost dreamlike. Im certain everyone's experience is different although we all experience shock and disbelief in some form. How we each choose to face things going forward is really important and will help you deal with this. The best thing maybe to try and stay as positive as possible and as reasonably optimistic unless there is a reason to be otherwise. Try not to run ahead and just deal with things as they arise. 

I was diagnosed with the same as you and didn't know how to feel , especially as initially I was told I'd probably only need a lumpectomy and radiation. I kept so much to myself and didn't really reach out for support or information from anyone.

After my onco test came back as 27 for me and my other factors were considered , such as a grade 3 larger than expected tumour, things suddenly took a different tack. I went in to see the oncologist on the Friday and was told I needed to start chemo on the following Monday. I then had to tell my family that things were a little more complicated and serious than I had initially thought. Even then I would tell myself that I could always stop if it felt like too much. And that's how I got myself through it , telling myself I had a choice for each appointment, and each treatment. So I can totally understand your mindset of plotting, as I did something very similar!

I didn't feel like I was given much information or given much support by my BCN team, I was told not to read my info pack too soon and to avoid reading on the internet. I didn't know anyone who had gone through this journey. I was in a complete daze until chemo started, then s**t got real. 

As someone who hasn't had any previous problems with my health before, and who even gets sleepy with paracetamol, I had 3x EC and 3 x docetaxel chemo sessions lined up. My first treatment hit me like a freight train, as did every single one afterwards , all my hair fell out in one huge clump after the 2nd EC despite trying to cold cap and each time it seemed like I was only just coming around when the next treatment would roll round 3 weeks later to hit me again. I ended up in hospital for a few days after my first treatment of docetaxel and had various tweaks made with meds to help me with the side effects of which there seems to be so many.

I just finished my last chemo session 2 weeks ago and have my months worth of radiation starting next week. Still dealing with side effects of nausea , metallic taste, sore feet , tingling hands, being a hairless wonder and feeling completely wiped out but so glad to be this side of 5 months of treatments. I don't know anyone who would say yes they willingly choose to do this, but faced with the alternative, I'm sure most people feel it is a necessary evil in order to have any form of worthwhile life after all this; in other words short term pain , long term gain is the goal here.

I'm trying to stay upbeat and have fun with some crazy wigs in terms of styles and colours I wouldn't otherwise try , much to the amusement of my kids!

I'm certain everyone here and on this rollercoaster has felt very overwhelmed and ready to run for the hills , because none of this is easy. 

People have said to me how brave I am, as I have a generally optimistic view to life , but the truth is I'm no braver than anyone else - we all have our journey to make .

I've been naive and completely oblivious to some things through this experience until I have reached them and had to deal them. 

All you can do is take it one day at a time and count each treatment as one done and dusted. I have been just so relieved to get through each treatment and have seen each as a battle won in this crazy war. 

I joined this forum half way through my chemo sessions when I found it hard going and wanted to get some real understanding from people who knew what it is to go through this experience. The people on this forum are incredibly kind and supportive and you will always have someone who will listen and cheer you on. 

Good luck xx 

It is the standard protocol to give Paclitaxel weekly. There’s a different suspension of the same drug, NAB-Paclitaxe, that can be given at different intervals. It’s easier on your body to have a weekly treatment as it is a lower dose, but the downside is the multiple hospitals visits / relentless nature of it. They will be working to do their best for you. 

Hi!

I'm doing so so thanks. Had 2nd EC on Friday. Side effects more obvious than after the first round; mouth ulcers, sore throat, bunged up tummy that sort of thing. The absolute worst is my hair. I cold capped both times but I have massive bald spots on the top of my head, my hair is shedding so much think I could almost personally provide enough hair for the wig industry for a year! It is pretty soul destroying but trying so hard to reframe my outlook on the whole shit show. I find it so hard to wrap my head around the effects of drugs that you have no choice but to take if you want to stay alive. Savage.Talk about a rock and a hard place! Mainly i'm just sooo tired. Still working because of financial challenges I worry about over the length of time of chemo, surgery, radiotherapy etc but it's a slog to get up and logged on some days. Just grateful I can work remotely and people let me have my camera off, as can't face seeing anyone except hubby and kids because of the change in my appearance.

I'm pretty frustrated by the lack of support out there. I'm on a waiting list for some counselling because I think Oncologist has been a bit worried about how I've been when I've met with her but hey, not sure anyone can navigate all of this with a smile all the time! BCN not particularly helpful and like you, I was told not to read stuff. Insomnia put pay to that! 

Like everyone I guess there are good and bad days. The taking each day as it comes is such good advice as when I stop to think about the length of the treatment plan and how actually doing it is going to feel (another 14 rounds before surgery or radiotherapy and then a year of herceptin - urgh) I do get panicky and completely overwhelmed. Reading the posts on here does help such a lot, particularly hearing that people can and do get through it all despite everything

So thank you to everyone who shares a bit of themselves; their wisdom, their fears, their hopes and at times humour. Biggest hugs to everyone who needs one right now or may do in the coming days, weeks and months.

Xx R

Hello Su31e,

I read your thoughtful post and felt all the feelings you were sharing.  You have had a lot of changes and that is so hard as we all want it to go smoothly but seems so much happens.  You really are doing well and dealing with all the ups and downs in positive ways.  Chemo has to be super difficult and I didn’t need it snd was very thankful as none of us know what hiccups will come our way.  Take care and keep us posted on your progress.  My treatment is done except for the anti estrogen Anastrazole for 5 years.  4 years to go.  Will be so glad when I am not on them but it is part of my treatment.  Hugs to you.

Barbara