Finished chemo but.....

Lillian67

so this week was my last chemo. I'm just 2 days out and feeling the usual crap. 
My onc is really happy with how things have gone. I started with a 9cm lump and at least 3 nodes lumpy by touch. She can't feel any lumpy nodes and barely anything in my breast. Signs are good but I'm freaking out about the CT and seeing what's really going on. Then there's the whole masectomy thing that I have put to the back of my mind till now.
I tried to talk to my husband about my fear and he just said 'what the fuck am i suppose to do about it?' 
When i tried to explain i just needed someone to talk to because i can literally count on one hand the 'friends' who actually call me, he actually compared his 'tough day' at work with what I'm going through and now is giving me the silent treatment.
everyone seems to think it's my last chemo so all is good - but I'm still going through this. I'm till smack bang in the side effects, i still have a long way to go before I get an all clear or maybe I won't. I still have to have surgery and radiotherapy and hormone treatment.
im so very tired of being strong for everyone else.

Unicornkisses

Hi Lillian67 I am so sorry to hear that your husband is not supportive or even understanding.
That is not a pleasant place to be and I feel for you.
I am in my second last chemo and will have my last one Monday week.
The week to ten days after feel like crap. So I know just how you feel, I don't feel like being strong, or brave or anything.
You need someone understanding to talk to. Do you have a breast cancer nurse? That is exactly what they are there for.
You can also access your local Cancer Centre, they should have a psychologist you can go to, both to discuss your fears and to work through any issues you are dealing with.
Both of these are free services.
The Cancer Council also has phone counselling services if you are in a more remote area.

I am planning my mastectomy too, I saw my surgeon today.
Weirdly I am looking forward to it, I just want this cancer out of my body! I am not looking forward to the lymph node removal part, but I have already been through a lumpectomy and bilateral reduction so I know the pain doesn't last long and I was surprised at how quickly the skin healed.
How I will deal with it psychologically afterwards is a bit unknown, but that breast has to go, it is trying to kill me.
Is your surgeon nice? It makes it so much easier if they make the explaining and planning process pleasant.

I also have to have CT scans and a breast MRI before surgery.
Even if you are pretty certain the results are going to be fine, there is always that uncertainty and the what ifs. 
It is great that your Oncologist is happy, and that your tumours have shrunk, that is such a good start.
I hope you can start to feel a bit more positive when you are not bogged down in the shitty side effects of the chemo.
As for friends, no, not many call. I am lucky to have lovely neighbours who ask how I am and clients who are supportive, a lot who have had relatives go through the same things so were helpful in letting me know what to expect. I can't imagine trying to do it on my own.

As for being strong for everyone, I felt really sad and a bit angry for you when I read your post.
I felt like shaking your husband and screaming at him.
This is serious stuff here, not a bad day at the office.
I hope it is just that he is finding it hard to deal with. 

Please try talking with the breast cancer nurse or psychologist, they have so much knowledge about the processes you have yet to go through and can help you to come to a more comfortable place to move to the next stages of your treatment.
The breast care nurses also help you through the mastectomy and after care.

If nothing else, I hope it helps to know that I am there going through the same things along with you. Radiation after mastectomy, and then hormone therapy after that.
We have a long road ahead of us, and really, no one who hasn't experienced it has any idea of what is involved.
giving you a great big sisterly hug, Jennie

Michelle49

Hi Lillian67 sorry you are having such a rough trot of it lately but keep you chin up. I'm here if you need to talk ❤️ I'm 23 days post mastectomy of my right breast and they way I looked at it was cancer in the right, get rid of it and most of the cancer is gone!. I was unlucky that my lump started from just under my nipple and went downwards, so the whole breast was better off going. I start chemo on 29th June then radiology after that as I have minute cells in the first lymph node with the rest clear. See if there is a breast cancer group near you as talking to woman that have gone thru or going thru the same as yourself helps, if not just message me here as I check this website several times a day. 
It's probably the toughest time at the moment for you, being in the unknown area, and still going thru the chemo side effects, which I am dreading but just know,_you are not alone, we all here on this site understand and will listen xxxx all the best I hope I helped 

Zoffiel

@Lillian67 You've got to consider sometimes what would happen if you stopped being wonder woman, lay on the floor, had a complete meltdown, drank half a bottle of brandy, told them all to $#@+ off and took to your bed for a week. 'I'll give you "I've had a bad day." Watch this' 

The whole thing is such a drag. I've just done surgery, chemo and rads. For the second time in a decade. I'm a tough old chicky, but then, I have to be. Thinking about what might happen later is just exhausting, so I don't tend to do it.

 It's not good to feel unsupported, but if that's the way things have turned out there's not much you can do to change people's attitude.  Appart, perhaps, from having the above mentioned tantrum.    Those who have called you and offered help are the ones to focus on: put everyone else in your mental 'freezer' and don't waste your energy on them.

There's always someone here too, your experience sucks, but you are not on your own. Marg xxx

Hopes_and_Dreams

Hi @Lillian67, there isn't much I can add to what the ladies have already said but I just wanted to say how sorry I am that you feel you are going through this unsupported.  Don't be strong for others, you don't have to be. This is life altering and you need to put yourself first. Many men aren't able to cope with illness and react poorly. I hope this is the case with your husband and he eventually wakes up! Has he read the booklet for partners? Please know you are not alone, we all understand what you are going through and are always here for you. Sending a hug, Jane xx

Lillian67

Yep. Turns out the only way my husband can say 'Im stressed too' is by being an arse. We talked it out but still feeling pretty let down that it was his initial response.
Thank you so much for your words. It does put me at some ease to know the surgery isn't so scary. My lump started just under my nipple too and covered almost half my breast so chemo first to allow surgery. My onc and surgeon are awesome and I do feel like I'm in good hands with them.
I've been on TAC. 6 rounds over 18 weeks. it was aggressive treatment and I handled it well - I guess too well because people seem to be just brushing it aside now. Downside to being positive I suppose. Everyone is all - you can beat this you have such a great attitude, you got it!
I just want to scream. My positive attitude is for my kids because I have to. It's for me to get through the day.
I'll give my BC nurse a call on Tuesday. I can't seem to meet up with the local support, they meet at night and I have 2 little kids. Plus they meet in a pub most often and I need support not a pub dinner
I did connect with the Cancer Council, but again we have had trouble with timing.
I'll get there just a shitty day yesterday, where I just needed a hug and I got a reaction I didn't expect. Maybe he needs to talk to someone more than me, he just seems to be burying his head in the sand of this is all too much so I'm just going to be angry.

melclarity

@Lillian67 I think his response is like some men but not all, in that just doesn't know how to deal with it, what to say or do. Men generally like to fix things, when they can't they get frustrated and uptight not knowing what to do. I think you said it yourself, you're tired of being strong....ABSOLUTELY!!! its hard work! I did this through my first diagnosis as I was a single parent and had to be for my kids, my 2nd diagnosis in 2015 my kids saw me in the depths of hell in moments...every facet of chemo there was,I was so very ill. I hated it!!! But you know what?? I showed them that yes Mum is incredibly strong...but she's also vulnerable, and so damn real and honest and so I think it showed them all facets rather than just one level of how you have to be. So I say, this is your time, put you first above everyone! THEY ALL think chemo ends you're perfect!!! NO IDEA!! I copped this from family and friends, most friends I never heard from after that because they dont know how to deal with it. I learnt that I had nurture me from now on, because this was about me.

In Feb I had a single mastectomy/diep flap reconstruction and I was petrified 12 months leading into it, I didnt cope emotionally at all, so I contacted a Psych I had 3 years prior. 1 session and it calmed me and I settled, I had the surgery and I never looked back, I dont' feel emotional at all strangely. My surgery was hard 8hrs, massive recovery but I feel amazing!! and so happy with the result. 1 more revision to finish the boob, top it up with some more belly/hip fat, pop a nipple on and lift my right breast, for me this is the icing at the end of my 6yrs journey. We always fear what we don't know...so keep talking. Lillian I have a wonderful partner in many ways, but he's direct and to the point, so I learnt to go to close friends for the comfort that I wanted. It's a bit like I think we expect 1 person to fulfill all the roles,its taken me a lifetime to realise that we get bits and pieces from a whole lot of different people. Hang in there. Melinda xo

primek

It's okay not to just be strong for others. Have a day where you stsy in your PJs if you want, cry a lot and eat...well something that you might still enjoy on chemo. I did that. I also pulled myself up and went out and put on the brave face for others. Night time is often the worse when the fear creeps in. My husband did counselling when I was having trreatment. He really struggked in supporting me other than saying you just gotta think positive....ffs...it makes no difference and it feels dismissive of my feelibgs. But we got through and now life has gone on...hopefully cancer free. Wishing you well for surgery. I was relieved to have my cancer removed.  Kath x

fairydust

@Lillian67 I think this cancer journey is hard. If we had obvious physical scars or walked with a limp or had an arm in plaster maybe some people may twig something is wrong. The most useless response I have come across is I dont know what to say or do and then my sister in law promptly ignored me.
Your husband sounds totally frustrated with the situation. Not that he doesnt care but at wits end to make it better.He cant make it better no one can. In time things will be better. 
Its a whole new episode in your life. best wishes

socoda

Hey @Lillian67, I'm glad for you that you've been able to talk somewhat with your hubby, and no wonder you're feeling a bit let down with the response you've received. I know being scared can be an excuse but bloody hell tell him to pull his head out of his rear end and give you some very necessary tenderness and a big hug!! Sheeeeeeeeesh!!!!!! If he is having problems tell him to talk to his mates and then give him a list of things he can do to help you (he probably is feeling pretty useless) make sure you put down that you need an abundance of pampering, spoiling and being totally looked after and having a crap day at work simply doesn't compare in any way, shape or form. You will get through this with flying colours. Perhaps talk to your hubby about having a couple of days break at an Otis foundation property and the two if you can plan that together? Sending you a huge hug, and a virtual bag of cement for your precious. Xx Cath

Lillian67

Thank you all
I was really angry on Friday. Angry I have cancer, angry that I have very little control over my life, angry because I feel like my MIL is taking over my house and kids (even though all she is doing is trying to help), angry I don't even get asked what help I want, angry that everyone keeps saying I'm going to beat cancer just because I'm so positive, angry because I'm sick of being positive. And then I got really pissed off because I finally have a bad day, and I wasn't allowed to. I wasn't allowed to feel down and angry and scared. And I really needed to feel that and let it out so it didn't eat at me and do I didn't direct it at anyone either.
I guess I'm just so fatigued at the moment. Gave myself the day in bed and just rested

melclarity

@Lillian67 I think that's the one of the hardest things about it all, is other peoples expectations and perceptions. You should be allowed to vent and get things off your chest, but sadly most people just don't get it. It used to frustrate me and I realized that they expected you to be strong...that's not real...and if they were walking your path right now they wouldnt be either not all the time. I say be true to you... I sure as hell found myself through it all and made no apologies to anyone. For me Chemo was the depths of hell, and same, I used to get people say the most ridiculous things, like you look so well, gee you're managing so well!! Ohhh and youre so positive...funny thing is, that has ZERO to do with it..so I say to you JUST BE YOU and don't apologize to anyone. The other thing that may be helpful is talking with someone? Not sure if youve tried counseling or a Psychologist, but it really helps. The Forum has been great too because we all get it, and we are never silenced in any way, we get to say exactly how we feel and that's so important. Hang in there...it will get better. xx Melinda xo

primek

Yep retreat and regroup.  You might need more days like it. We all do. X

Zoffiel

I was at a BCNA forum last week and one of the speakers discussed the whole dilemma of 'finishing' treatment. It really struck a chord with me. I feel like I've been holding my breath and walking a tightrope, now I'm off the other end all I want to do is take a deep breath and yell. 
I drove 720 km today and stopped for a couple of very therapeutic screaming sessions in isolated places. My raw throat has been attributed to 'a bit of a cold' which is, apparently, a more acceptable than explaining I was bellowing at nothing to let off steam.  Humph. Marg