Post Op Recovery

[TARN]

Hi All,

I'm new here and new to cancer. One of those girls that figured it would never touch me, I have a very large family and none of the women have had breast cancer. I'm a professional 35 year old who can tough out most things, but this, has completely floored me. I've been pretty positive as by no means is what I have as serious as it could have been and I know there are other women out there who have been handed a less successful outcome, i can deal with the bigger picture, but I'm going insane with the post op recovery.

I noticed a lump one random night so booked an appointment with my gp the next day, I was rushed in for an urgent mammogram and ultrasound on 16th October and on 16th November, I had a full right mastectomy and axillary node dissection. Its now almost 2 weeks later and I'm in agony, aside from getting used to the wound across my chest, the lack of movement i can comfortably achieve is debilitating, I've had 1 successful day out of 9 since I got home where my movement was fantastic, I even drove that day. I know everyone heals differently so i do realise that I'm not superwoman, but I'm sick of being scared to go to the toilet because it hurts my entire body, I hate not being able to shower as thoroughly as I used to because of mobility issues, I'm sick of sleeping on my back because the pressures my body feels make it impossible to get comfortable any other way, and although I know and fully appreciate the benefit of the drain, it is bearing the full brunt of my anger, frustration and sheer pathetic state.

I know it may seem selfish to those of you who have a more serious case than me, but did anyone else go through this ?

[jaykay]

Hi Tarn
i read your post and can empathise with you, having 'been there, done that'. When you are so used to toughing it out, suddenly having your body effectively betray you is the tough bit. You're only just over a couple of weeks out of surgery and your body needs time to heal. I remember vividly just a day or so after surgery (I had bilateral mastectomies when I was 39) having a nurse tell me to relax and do what my body would let me do, but in a relaxed manner. Were you given stretching exercises to gradually build up your arm mobility? "Walking" the affected arm up the wall (a few times a day), aiming for a little bit higher each day is really helpful. There are other exercises that you can do. Is there a Breast Care Nurse you are able to contact (or maybe via your doctor) that could show you other exercises that will help? Sleeping on your back when you'd rather not is also hard. I had wee 'softee' pillows that I put between my arm and chest to help relieve pressure which made it slightly more comfortable. Your local Cancer Society may have these available which may help.
Drains a a real nuisance. Do you have a little bag you can wear so it's not bumping around all the time? Hopefully they'll be able to come out soon and that will really free you up.
You did really well to drive so soon after surgery. That one day must have been a really good one. i'm guessing your dominant side is the surgery side (from your showering comment)? I can honestly say, it really does get better, even just a wee bit each day.
Anger and frustration are valid and acceptable emotions and need to be vented (just not on your drains!!). Maybe talking to someone who has been there done that may help also. Cancer Connect is a peer support service that will be able to link you up with someone to talk to over the phone (0800 CANCER will be able to put you in touch with someone if you would like to talk)
Tarn, it is do-able, if somewhat frustrating and painful (both physically and emotionally). It is not at all selfish to feel as you do, as everyone is affected differently and experiences things differently.
Take care and feel free to comment again, I will look out for your response
Jenny

[TARN]

Hi Jenny,

Thank you for your response, as mean as it may sound, knowing that someone else has had the same experiences is reassuring. There is an amazing amount of support out there for cancer battlers and for me, its overwhelming. I have a fantastic Breast nurse who I contact if I need to, she's awesome and just talking to her about complications that I've had and having her assure me, I was normal and it was ok was priceless.

My problem with this whole situation I've found myself in, is that I can't control it. I live on my own and have been fiercely independent since a young age, when this hit me, I was blind-sided and figured if I can control it, I can beat it (I figured the same MO would work for this as with everything else I've dealt with). I've since discovered that emotional control, has a fixed expiry date. Mine was last weekend, I hit rock bottom at the sheer lack of motivation my body had to recover when I wanted it to. I've been told on many occassions that my body needs more than the 2 weeks I gave it, to recover, the anaesthetic, the physical and emotional trauma and the experience itself, leaves the body feeling ravaged and requires time to heal and to rest. As you will no doubt be aware, I'm impatient.

I was given physiotherapy based exercises at the hospital which I have been doing, wall walking being one of them, some times when I do them, my bits and pieces work as they should with a bit of effort, yet 2 or 3 times later, i can hardly move. I know i'm not overdoing it or rushing them but I'm so worried that I'll lose full mobilty if I miss a rep or stop when it won't work, I was told I would experience pain and thats natural and to continue on gently, but sometimes I wonder If I'm being a bit soft, i've healed an awesome amount of scar tissue in my life (accident prone adrenalin junkie) but this is miles different, I'm really glad the Encore swim programme and pink pilates is here in wellington as I know I have options should I need them.

I'm driving more now, which is fantastic, and have been told that the drain can come out tomorrow due mainly to complications I am having with it (serious party going on in my head right now). I think I am slowly coming out of the funk I was in last weekend.

Yes it was my dominant side that was removed, although I am ambi-dextrous, I rely heavily on my right for physical exertion, this and the fact that I have a fixed shower head, makes showering ... tricky. I've mastered it now though. And going to the bathroom too :) I'm pleased to report.

I've been able to work from home this past week, which in itself has been draining but wonderful for my disposition.

When it comes to talking about experiences, I prefer the anonymous avenue of forums. When I first told the select group of people I was close to about this the support was great. I didn't know how to accept it and they didn't know how to support me but the intentions were there. I was adamant I was going to do this on my own and strangely .... I've just come back home from spending the weekend at my parents (first time since I left home 17 years ago). What I have trouble dealing with, are those that have found out by over hearing conversations, they are the ones that say oh I know someones aunties, ex boyfriends cousin had that ... or I had a scare, but it wasn't anything to worry about so I know how you feel.

I'm sure there are people like this for any kind of situation but whats the best way of dealing with them without snarling at them? Suggestions ? yes they mean well, but I'm not interested in vicarious empathy.

I know I have a lot to say and a lot of questions for someone who has managed to escape the more serious results, but the beauty of the anonymous forum is that you can vent your spleen, speak your mind and offload all your obnoxious anxieties, and no one knows who you are :)

Thank you for listening, and thank you again for your reply, it was a beacon on a stormy night, an intimate interaction without the eye contact. Exactly what I needed.

Thank you,

Tarn

[jaykay]

Hi again Tarn
Good to hear that some things are improving, you're driving more and that drain is (hopefully) out!!
Hitting rock bottom is tough, but at the risk of sounding trite, things can only get better. The emotional stuff will come back to hit you unexpectedly every so often, but will hopefully be easier to deal with as time progresses. There are some elements you can control but the majority you can't and when you are as independent as you (and I) are, it's hard but accepting those uncontrollable things helps to cope with them. You can only do the best that you can (which you obviously usually do!!)
Other people's reactions are often difficult to deal with, especially the "I know how you feel" when they can't possibly unless having been there. While as tempting as it is to 'snarl' or make some suitably facetious comment, it's usually best to 'blankly' acknowledge the comments and change the topic or simply ignore the comments. Sometimes I remember asking them a 'curly' question about so and so's aunty, and that usually ends that line of discussion abruptly! Sometimes though, it's because the other person just doesn't know how to react/respond, and to an extent, it's better sometimes than them avoiding you totally, which occasionally does happen.
Doing some work from home was a good idea, as while physically draining, your brain needs that 'occupation' to literally take your mind off always thinking about what is happening.
I'm glad I could be of help, keep posting as you need to, any questions are fine! I'll keep an eye out.
Take care Tarn
Jenny