Previvor Blues

Jeg fandt for nylig nogle gode sites, godt nok på engelsk, men de beskriver virkelig fint, hvad man muligvis kan forvente – og hvad der er normalt at gå igennem i forbindelse med de forebyggende operationer.

Deler dem her, håber de hjælper derude. Det kan være rart at læse om andre, som går igennem noget der ligner ens egen situation en smule.

 

On The Down Side

Previvor Blues or Depression After Surgery

The Blues – Part Deux

 

Husk også denne oversigt over mulige faser i forbindelse med et mastektomi, jeg tidligere fandt:

 

Oversigt over mulige faser i forbindelse med et mastektomi

 

Jeg vil rigtig gerne skrive mere om dette emne senere, indtil da;

husk du ikke er alene, og forsøg og mind dig selv om, at det hele er en process: Det er OK at føle som du gør, uanset hvad. Det bliver bedre.

Måske har det hele bragt en form for post traumatisk stress situation for dig, grundet en hård barndom? Det siger sig selv, da os med disse profylaktiske (forebyggende) operationer højst sandsynligt har stiftet bekendtskab med kræft meget tidligt i vores liv; måske har vi mistet vores mor, far, en nær slægtning, alt for tidligt.

Husk, det er OK, i morgen bliver det bedre.Alt tager tid, det er nogle store forandring, og derfor også store følelser, der skal bearbejdes og “ligges på den rigtige plads”.

Minder mig lige om en video, kan I mon huske den også 🙂

 

 

Jeg deler lige teksten til Previvor Blues sites her nedenunder ligeså; så er jeg sikker på, at den ikke forsvinder nogle steder hen 🙂

 

On the Down Side

 

Today marks the third day since my surgery. I was told by the nurses a few days ago that most women, after having the DIEP procedure, will have a good day or two, then a day when the pain spikes up pretty bad, then goes back down. Today is that bad day for me. I woke up around 6:30 am in a lot of pain. Probably the worst pain of my life. I began to question myself for choosing this type of procedure. I KNEW that the DIEP and other flap procedures are a harder recovery than the expansion/implant option. I’d done my homework and I knew this. Knowing this didn’t stop me from feeling for a little bit that maybe it would have been better to just let the breast cancer come and take me. I was not in a happy place.

What happened is that I didn’t stay on top of my pain management. I slept all night without waking up to take pain pills..other than the pain pump that is still auto-pumping into my abdomen. So all of those hours of sleeping, not moving during the night and not taking pain pills, combined with my walking a lot around the ward yesterday caught up with me. My neck & back hurt (nothing new there though), my breasts are hurting, but that has been manageable, it’s the incision in my abdomen that is causing me the most pain. I wish I could say its equivalent to a c-section, but it’s actually worse. It’s a hip to hip cut, and a lot of manipulation went on in there. Once the nurse realized how much pain I was in she quickly gave me a pain pill, but it wasn’t enough.

I called a good friend of mine, Lisa, who has had a PBM too, but not the same kind as me (not a flap procedure). I was using her shoulder to cry on when my doctor came in. So I quickly said good-bye and Dr. D checked me out. I let him know about how much pain I was in, even worse than the day before. I felt like I had taken two steps forward and one step back. I have small tubes going into each breast (in addition to the drainage tubes) which allows them to listen to my blood flow. It sounded good to him. Physically I’m healing perfectly and he’s very pleased with that. He agreed that I’d gone too long without pain pills, and asked the nurse give me a Demoral shot in my leg. It knocked me on my ass and I zonked out for about three hours.

When I woke up I found myself feeling very much depressed, sitting in the chair in my hospital room watching some stupid reality show that I didn’t care anything about. My nurse of the day came in my room to check on me. I let her know how I was feeling. I felt groggy from the Demoral shot, and was questioning my choice of procedures, and I let her know that I was feeling depressed. She likened it to postpartum depression, and it’s true, it’s very much like that. She let me know that everything I’m feeling and going through is normal. She said a majority of women that go through this procedure deal with short-term depression. Many times they even prescribe something for it and if I want it, they can do that for me too.

She said the first five days are the worst, with one of those days really peaking in pain. My nurse also said that part of the depression is from body image issues – and yes, it’s true. I feel sort of like Frankenstein’s monster. I have drainage tubes coming out of each breast and two in my abdomen. I have four more wires going into my breasts (two in each) so they can easily check the blood flow. My bandages are off my incision, and when I look at myself in the mirror, with my huge hip to hip slice, and the cuts on both sides of my breasts, it sort of freaks me out. So yes, body image is a problem, in addition to the amount of pain I’m in. Dr. D assured me that within a few days the pain will ease up. My nurse mentioned that again.

I felt a little better when the nurse explained to me it’s all a normal part of the recovery process. And she then reminded me why I chose the DIEP over other options. For me, it was the best option. I didn’t want to go down the implant route. It’s great for some women, and many of my friends, but I didn’t want the potential complications that can go along with them. The bi-weekly fills would have been a problem for me too. I live in a small town, and to have to go out of town every two weeks, with a toddler in tow..I just couldn’t see it happening. I have other reasons too. Today I started to question them. My breasts already look amazing, and they aren’t even close to being done yet – my stomach will be flat as a board, and aesthetically I’m going to look great all over once Stage 2 is over with (about 3 months away) – I keep reminding myself of that.

I hesitated to blog about this. I have a lot of readers that feel encouraged by what I write. I don’t want to frighten anyone. But in the end, I do what I always do, and use my blog as a journal to get out my feelings, happy or sad. I want others who’ve been through these surgeries to understand that feeling down in the dumps during the recovery process is perfectly normal. I’ve been told that it will pass, along with the pain, and I do believe it. DIEP and other flap procedures are not the easiest reconstruction option to go through, but when it’s done the depression and the pain WILL fade and I’ll be left with a pretty body – and let’s not forget why I did this in the first place…an extremely low breast cancer risk.

 

 

 

Previvor Blues Or Depression After Surgery

 

I know I already touched on this the other day, but I do feel like more attention needs to be brought to this. I spoke with one of the doctors at the hospital the other day, the day I wrote that post about The Down Side, and he also wished that more people would talk it. Some have, if you see the comments below that post, you’ll see that depression after surgery is very common.

A previvor is someone like me – I don’t have cancer, but have learned that I have (actually..HAD) a very high genetic predisposition to getting it (breast and ovarian mostly). I had surgeries to remove all of those parts to avoid getting the aggressive type of cancer that goes after people like me. I’m not a survivor, but I’m obviously something. Some ladies thought it would be nice to have a name to call people like us. The word they came up with was Previvor. Some people don’t like it, but I do.

So let’s get to the meat of this post. It’s about Previvor blues, and depression or sadness after prophylactic (or maybe any) surgery.

Some of the things that have been bringing me down, or making me sad, depressed or blue since my surgery:

People…Friends. I have had an outpouring of love, support and encouragement from more people than I can count, or even respond to. This has helped me in ways that they probably don’t realize. Knowing that people are in my corner, rooting for me, and cheering me on, that helps keep my attitude positive. It helps tremendously to know that people care. I’ve gone back to my blog comments and Facebook page, and email and texts and read and reread these messages. It helps me. It gives me strength.

But there are some people that I feel I should have heard from, but just haven’t. Not an email, not a text, not a phone call. Nothing. Nada. Zip. I’m a pretty easy person to contact. I use Facebook and email. I blog, and I think just about everyone I know in the real world knows that I do. I have a cell phone, and so does my husband. I don’t expect flowers or balloons, but I guess I did expect at least a well wish of encouragement. A simple “Thinking of you.” would have sufficed. I have tried to not let it bother me. But as much as I try, it does bother me. I wonder how I’m going to look those people in the eye, the next time I see them, without remembering that they didn’t even attempt to be there for me, in my time of need.

Pain. Today is the 5th day after my surgery. It’s better than the previous days, but it’s still painful. People say it gets better a little bit each day. That’s not exactly true. At least not in the beginning. It’s bad, gets a little better, then gets bad again, then better – it’s a roller coaster. There are many different reconstruction options out there. I had decided that the DIEP was the best for me. There are pros and cons to all of them. The pain with this type of reconstruction has been overwhelming at times. Especially on my third day when the pain peaked. There have been lots of jokes and smiles about where I came to have this procedure, and the tummy tuck I get along with it. My breasts are a cup size bigger. When I come back in 3 months I’ll have a breast lift, lipo and fat injections, and my body will look amazing. The hospital doesn’t feel, look or smell like a hospital. The staff is wonderful, kind and caring. It is set up like a hotel, with a 50” TV in each room, medical equipment was in a hidden panel in the wall – covered by pretty pictures. There were fresh flowers around the hospital. A family lounge with a nutrition bar for the convenience of visitors. A chef prepared our food to order – not just my food, but my husband’s food too. The presentation was beautiful. We have a driver that picks us up for all appointments. But as wonderful as all of that is (and it IS wonderful), this is still a big deal – it’s still major surgery I just went through. My breasts were sliced from the side of my nipple to the sides of my body, everything was scraped and scooped out. My stomach was sliced open from one end of my hip to the other and all (or most) of the fat was scooped out, then placed into my breasts. I was sutured back up. Tubes, wires, drains, bandages, binders all over my body. Boob job – tummy tuck – sure – a hell of a lot of pain – more than I’ve ever been in in my life – yes. And I’ve dealt with chronic muscle pain for four years. I’ve been hit by a car while riding a moped, and I’ve had two c-sections, I had a prophylactic hysterectomy & oopherectomy and this is the worst. I’m not trying to scare anyone, I’m just sharing my experience. A double mastectomy is no joke. A flap procedure even less so. It’s not a walk in the park, and I’m not at a resort. In the first few days I felt as if I’d been hit by a truck and sliced and diced. On day five the pain is not as bad as it was previously but I still have a long way to go. I feel sad when I think about the pain. I feel a bit defeated by it. I know that when I’ve healed completely, my results will be amazing, and my cancer risk is now less than 2%. I know that good things await me. Right now though…the pain..navigating my way through it..it’s daunting, and it’s scary.

Support. I find myself feeling very sympathetic towards the single BRCA woman. Going through this type of surgery alone would be unthinkable. There is no way I could do this without my husband. He’s been right there for me. Learning how to strip and empty my drains. He’s cleaned my wounds with Benadine, helped me shower, helped me to get up and down from the toilet, pulled up my underwear, put my socks and shoes on me. He helps me get into and out of bed, and he’s always there with his loving and encouraging words. I feel sad that not everyone has a person like this by their side. He makes me feel loved, and when I tell him with tears in my eyes that I feel like Frankenstein’s monster, he tells me I’m beautiful, and that my scars will be a lovely reminder to him of what I was willing to do for us, and our family. I love him so much, but can’t help but feel sad for those that are facing this on their own. I wonder if there is an organization to help women like that. I hope there is.. I should try to find out..

Far away from home: I miss my sons like crazy. I thought we could Skype and that would help, but it never fails, there are always problems whenever we try to Skype. It freezes up, or won’t work at all. I’m so grateful that my in-laws are sending us pictures and updates daily. I miss them so much it hurts. I’m worried that I’m not going to be able to hug them as big and as much as I want to when I see them.

Crowds: I left the hospital yesterday, am at the hotel now, until the 10th. I’m afraid to leave. I’m afraid of crowds. I don’t want to get bumped. The town is full of excitement right now. The Saints have never been to the Super Bowl before. AND it’s Mardi Gras – there are a lot of excited people out there… I don’t want to get bumped or knocked down by any of them. I’m thinking ahead to navigating the airport. I know by then I may be feeling lots better. But right now I’m afraid.

After prophylactic (preventative) surgery, many of us suffer from survivor’s guilt -depression or sadness. Many have watched their loved ones battle breast and/or ovarian cancer. We’ve (that’s the collective we’ve) seen our mother, sister, aunts or cousins battle breast or ovarian cancer. Some have watched their fathers battle breast cancer too. Many times their loved ones did not win that battle. We feel grateful to have a chance to not have the same fate as them, but we feel guilty too. We wonder why we have the chance to live, and they didn’t. Some people believe in God, and think that it must be part of his plan. Others believe that sometimes things just happen, and its just all random, the luck of the draw, chance.. For me, I really don’t know. But I do have that guilt. Not just for people I know, but for those I don’t know, that have suffered in ways that I will never have to. Why did I get this chance, and they didn’t? I really don’t know. Maybe a cigar is just a cigar. Regardless of the reason, it’s something that many of us feel, and have to find a way to work through. What I do know, is that it’s not uncommon to feel this way.

It’s not uncommon at all. In fact, it’s quite common, but people don’t want to talk about it. We don’t want to scare others, and we don’t want to appear to be weak. We want to be positive, and encouraging, but when it comes right down to it, it’s all a process. The pain, the recovery, the sadness, for a variety of reasons that all kind of snowball. Most of us go through it. It’s okay to talk about it. It’s okay to feel sad and frustrated. It’s even okay to ask for help. It’s okay to talk to your doctor about it, and if you feel that the sadness is lingering for too long, it’s okay to ask for an anti-depressant for it. It is okay to seek out therapy and counseling. It’s okay to cry, and feel a little sorry for ourselves. The life of a previvor is not always an easy one. I’ve been handed a gift of knowledge. Along with that gift comes a lot of scary stuff. I know I should feel grateful to know, and I do. But I also resent that this is happening to me, and wish that it weren’t. I wish there were easier options than this. But for now, there’s just not.

I do know that I’ll be okay. And so will you.

 

 

The Blues – Part Deux

 

This entry is less for other people, and more for myself this time. I have a lot swirling around in my head and blogging being a great outlet for me..well..here I am.

I woke up feeling more pain in my breasts. This afternoon it’s feeling fine, but by this evening I’m sure they’ll be sore again. That seems to be the way it goes, on a good day. They are more swollen and painful first thing in the morning and then again in the evening.

I wrote a short while ago about depression after surgery, or better known as post op depression. This seems to be an ongoing thing for me right now. Well, it’s more like an off and on ongoing thing. One day I’ll be okay emotionally then another day I’m anything but. When I’m feeling down I usually do my best to try to shake it off, but I do feel like it’s been a struggle to try to maintain a positive outlook, and while some days I’m successful, other days I’m just not. I feel like I’ve had too many days where the doldrums are getting the best of me though, and I don’t like it. I just really don’t like it. There was a time in my life that depression was just who I thought I was, but I haven’t been that person for a very long time, and I have no desire to go backwards in regards to that.

I’ve had a chance to talk to many other BRCA+ ladies who have gone through the same thing – depression after surgery. Any number of things can be contributing to these feelings of sadness that I’ve been having. I’ve probably already blogged about this, but I feel the need to do so again so please hang in there with me while I get it all out there.

It’s been three weeks since my surgery. I am being hard on myself and feeling like I need to be farther along than I am. I feel that I should be off pain pills, but I’m not. I feel like I should be able to pick my toddler up, but I can’t (not without paying for it anyway). I feel like I should be able to clean the house, do my own laundry and go to the store. I can’t, I can’t, and I can’t, not all of that anyway. I’ve been assured by my nurse that it’ll be 4-6 weeks before I’m able to do any of that stuff – so why do I feel so down on myself for not being up to it at 3 weeks out? I can do parts of these things, but not all of them, and not all back to back. I also know that hormonally speaking my body has been through hell lately. Not just this recent surgery, but lets not forget that just a few short months ago, back in October I had a full hysterectomy/oopherectomy. Instant surgical menopause entered my life. With the removal of my breasts went even more estrogen from my body. Chemically – my body is going through a lot of changes. Emotionally and physically – same thing. In exactly one years time I learned of my genetic mutation (and that was just months after the birth of my baby boy! So my body was going through hormonal changes then too!). I recovered from a very rough cesarean section, adjusted to life with a baby (my other son was 16 years old at the time; it’d been a while since I took care of a baby). I learned of the possibility of being BRCA1+ – thought for sure I was going to die early – found out that I did indeed have the mutation, found out over time it wasn’t an automatic death sentence. Nursed my baby for a year. Removed my female reproductive organs. Landed myself in the hospital at Thanksgiving time with internal bleeding. Had a double mastectomy. Oh, and have been dealing with chronic muscle pain for the past four years!

*Whew – interject much needed pause to breath here*

In between all of that I helped to start up a BRCA Sisterhood group on Facebook and kept up my blog, all with the purpose of trying to encourage other women in their own journey through the BRCA world. Rarely does a day go by that I don’t have a new, private message waiting for me from another BRCA+ lady reaching out to me for support and encouragement. This makes me feel special, and proud of myself, and happy to know that through my own suffering and hardship I’m able to make it a little easier for another woman who is about to go through what I’m going through. It validates to me that I’m doing something meaningful and worthwhile. On top of all of that I’m trying to be a friend, daughter, sister, wife, a mother and enjoy my older son’s last year at home before he leaves for college. Oh, and I almost forgot – write a book! Yes, I’m writing my memoir of my BRCA journey, and I just need to get through this last part of it now before I can wrap it up.

I think it’s pretty easy to see that I have a lot on my plate. Some of it is good, some of it is bad, some of it is a little of both! All of it is big – life – changes. I think the fact that I’m battling depression here and there is probably pretty damned natural.

I called my nurse (yes, again!) at the Center for Restorative Breast Surgery this morning and told her about some of this. I asked if the doctor could prescribe an anti-depressant for me. I feel like there is no sense for me to try to keep fighting these sad feelings on my own when there’s an easy answer to it. She didn’t think it was going to be a problem and is going to call me back. I’m still waiting for the call. I’m assuming by this time tomorrow I will have swallowed my first pill.

I don’t feel ashamed for reaching out for help. I don’t think I’m ‘less than’ and I don’t think I’m a failure. I think I’m just a person that’s going through a lot in life right now, and I want to see the bright side as often as I can. This past year I’ve done all I can to make the best out of bad situations. I thought that if I couldn’t find the silver lining on the cloud, maybe I could just BE the silver lining on the cloud. I have a lot around me to be grateful for, and I think it’s okay to be seeking outside help in dealing with this.

I know in just a few short weeks I’ll be feeling better all around, and I know that when it’s over, it’s over. I know that as hard as this recovery is, it’s still easier than the very possible alternative. I can’t imagine going through all of this WHILE battling cancer. It’s why I couldn’t just wait around to get it. Well, one of the reasons. I still believe in what I did, I still believe in my choices. I still believe in ME. I just need a little help to remember all of this when I’m feeling down.

*Update – same day*
Shortly after posting this my nurse called me back. My doctor felt it best to prescribe an anti-anxiety pill rather than an anti-depressant – since it’s situational depression, and with him being out of state, along with the fact that anti-depressants can take a few weeks to work, he felt that Xanax would be a good alternative for now. He also said that anti-anxiety pills work a little quicker than the anti-depressant. If the depression persists after the six week mark I should see my general practitioner, but I was assured repeatedly that this is such a common emotion/problem to deal with directly after surgery, and they are sure that by six weeks I’ll be feeling ready to take on the world again. I’m sure they are right and am more than ready for that day!

 

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