Six Months Post Mastectomy

WARNING: This post contains photos of my mastectomy scars. Skip this one if you’re likely to find that upsetting.

It’s the eighth of February today. That’s six months since my mastectomy.

Anniversaries take on a new significance when you’ve had triple negative breast cancer because our highest risk of recurrence is within the first three years. By the end of five years our risk has dropped to the same as everyone that’s never had breast cancer. It’s one of the few consolations for having a form of breast cancer that’s typically described as ‘more aggressive and with a worse prognosis than other breast cancers’.

I thought you might like to know how I’m travelling.

In a word, brilliantly!

My wounds are almost (but not quite) fully healed. I’ve been surprised by how long it takes. There’s a period of rapid healing immediately after surgery, as I expected, but then there is also a long, slow healing where the scar tissue gradually loosens up and improves in both appearance and sensitivity.

I still get strange electrical pings from time to time, but nowhere near as often as I used to. The tightness around my chest had greatly improved, particularly across my back. Following surgery I had a strange stabbing pain in the centre of my back when my bra fastening used to be. If I rolled my shoulders forward it was worse. That’s completely gone now. So is the mysterious stabbing pain on the outside of my upper arm near the shoulder. My surgeon, Kylie, described both as ‘referred pain’ and I’m happy to be over it.

How to describe the sensation across my chest? I think if you took something like a clay mask,  spread it over your chest and let it dry you’d be approximating the sensation. It’s a little tight, but not painful. Kylie warned me that my chest would get tighter over time and then it would ease. I’m at the happy end of the easing process with hopefully a little way to go.

As the skin has loosened away from the muscle it’s become more comfortable. You can see from the photos that there’s now a little bit of a droopy bit, particularly on the right hand side. I joke with my husband that my breasts are growing back. Actually, it’s a good thing because I now look less like a mastectomy patient and more like a naturally flat chested woman. I’m doing some hand weights to build up my pectoral muscles and to give me a bit more of a natural shape.

Having said that, I’m now completely comfortable with my flat chest. I’ve had a lot of fun replacing most of my old wardrobe. My two favourite ‘looks’ are a beautifully patterned cotton shirt over a singlet with long pants, or one of those box shaped dresses that sits just above the knee. I didn’t feel comfortable wearing shorter skirts before my surgery but now I enjoy putting my ‘yoga legs’ (as Graham calls them) on display. I’m accessorising with beautiful scarves and long necklaces which now sit beautifully thanks to my dolphin chest.

The only pain I have is from arthritis in my hips and shoulders (which I would have had anyway) and the peripheral neuropathy in my hands. They are very sore when I first wake up but improve quickly with my morning yoga.

My recent followup appointment was with my radiation oncologist, Andrew. He reminded me that I shouldn’t give up on the peripheral neuropathy and that sometimes nerves take a very long time to regrow. He suggests waiting a decade before calling it quits. This is great news because Rachel, my oncologist, has warned me that whatever I had twelve months after chemotherapy I would probably be stuck with for the rest of my life. It’s not really a big deal either way. I can still type, obviously, and last week I finally returned to playing my cello.

It’s made me very happy to discover that in spite of the numbness in my fingers, the need to completely reposition my instrument and the poor playing that results from two years without practice, I can still read music and make a beautiful sound. The challenge now is to return to daily practice. Like so many things, the cello requires a regular small investment in order to reap returns.

Andrew and Rachel are in agreement about what we thought was recurrence. It’s likely that this was actually DCIS left behind after the first surgery rather than new cancer. Why does this matter? Well, there’s a huge difference between a bit of old cancer still growing away and a whole new outbreak of the disease, particularly in terms of my long term survival odds. Although I was initially shocked at the possibility that my surgeon had made a mistake I now consider it to be serendipity, a happy accident.

You see, what we know, thanks to Kylie’s ‘mistake’, is that the cancer I used to have was resistant to chemotherapy and radiation therapy. It is almost certain that I would have needed a mastectomy at some point. Having it when I did meant the tissue removed was free of cancer and that greatly contributes to my future survival. You don’t get better margins than ‘no sign of cancer in this tissue’. If Kylie had removed a bit more tissue in the first surgery I would still have potentially lethal breasts with no guarantee that we would have caught the recurrence before it had spread to vital organs. Everything has turned out for the best.

I know Kylie still beats herself up over leaving the clip and some of the tumour bed behind. I’m glad I’m not a doctor. They are human like the rest of us and that means that, sooner or later, they will make a mistake. It’s unavoidable. A world where it’s safe for them to acknowledge that and talk about it is a safer one for all of us. It’s not a metaphor when people say that doctors often bury their mistakes!

It’s an interesting thing to come face to face with your own mortality. Last night I lay in bed thinking about a new blog called ‘We are all dying’ or ‘live like you’re dying’ because I now believe that when you really understand this, all the way to your temporary bones, life becomes richer, more precious, more meaningful………if you let it!

It still sneaks up on me at odd moments. My husband and I will be watching something on the television and laughing or joking about it. I’ll suddenly feel overwhelmed by my love for him and all he’s done and been since I was diagnosed. One day we will both be gone. That makes being here so much more beautiful.

When we’re intimate I sometimes weep with the wave of emotion that floods me. He touches these scars as if they were precious. You’ll notice that the photos are the right way around for this post because I finally felt okay about asking him to photograph them rather than using a mirror and taking them myself. The photos still shock me. From this side of the scars it’s easy to forget. Graham has just adapted to incorporate this new version of my body. He’s so grateful that I survived. He loves me.

My daughter returned from Europe and we have two precious weeks before she returns to university. I want to follow her around and embrace her randomly. I am so proud of her. She could have walked away from her studies without anyone criticising her because, after all, her mother had cancer. But she stuck it out. Her marks dropped but she still managed to pass two of the hardest subjects of her degree. Because the last eighteen months for me have been about surviving I haven’t been able to support her as I would like to have done. Now I can.

Her physical and emotional health have suffered. She’s working on being well. It’s been a shock to her to contemplate a world without me in it and it shows. I wonder if she’s realised that, like me, she is also temporary. Maybe that’s not a concept you need to come to terms with in your twenties although I know from the many young breast cancer survivors I have met that there are plenty who do. I pray for a cure. I pray for a future where she doesn’t have to fear my genetic inheritance.

My six month anniversary present was news from the Mayo clinic in the USA. They think they might have a vaccine that prevents the recurrence of triple negative breast cancer. I want to put fifteen exclamation marks on that. I still cry with joy when I watch this:

http://www.usatoday.com/story/news/nation/2015/02/03/mayo-clinic-triple-negative-breast-cancer-drug-trial/22785941/

It’s too soon to call this a cure. They’re just starting trials and the trials may yet prove that the treatment doesn’t work, but hope is like rain in the dessert when you’ve had cancer.

So, as always, here’s the photos. This is what my body looks like after six months of healing and taking very good care of myself.

P1070195 P1070196
P1070194As you can see, the puckering to the left hand side is much better and I’m reasonably confident that this is going to keep improving. I’m seeing a massage therapist that specialises in oncology at least once a fortnight and sometimes more often than that. I highly recommend it. I’m also brushing my torso with my hands each night to help promote lymphatic drainage. The lymph system sits just under the skin so you really just pat yourself like you would a cat, with long strokes down the body. I can feel the lymph moving when I do this. It’s a mild tingling sensation. I’m hoping this helps me to avoid lymphedema, a common complication of cancer treatment.

The skin on the left hand side is also much better. This skin was damaged by radiation therapy and that’s why you can see such a marked difference between the two sides. You can also see the arc of a scar from my original breast conserving surgery above my mastectomy scar. I’ve been using macadamia or hemp oil, perfumed with essential oils, after my shower and that’s helped.

The question I get asked most often is “Will you be having reconstruction?”.  My answer is still “No”. I am very happy with my decision to do the best thing for my health and have the least amount of surgery possible. Even with all of the weight I’ve lost I still have a little bit of a belly. I’m very happy to have it sitting where it has always sat rather than having it surgically relocated to my chest, with all of the risks, pain and recovery time that would have involved. Just the thought of more than ten hours under anaesthetic was reason enough to avoid it but I’m also happy about not having any more scaring than was medically necessary.

Everyone makes their own decisions on reconstruction and, if you’ve decided to have it, then I sincerely hope you are as happy with your choice as I am with mine.

I’m still not inclined to wear ‘foobs’ (fake boobs). I don’t think there’s anything about my appearance that need ‘enhancing’. Of course, I’m also the kind of person whose happy with my prematurely grey hair, my glasses over contact lenses and my habit of saving makeup for very special occasions. There are some clothes that I know would look better with a bit of a mound. Perhaps, in time, I might have a look at something to go under evening wear but so far, so good.

Emotionally I’m feeling great. Thanks to Russ Harris and the ACT skills I’ve been practicing I now have an effective method for dealing with fear of recurrence. Losing 14 kilos since surgery (and only two of that was actually cut off me) has made me very happy but it’s really The Fast Diet that’s been a major contributor to my emotional well being. I am now in a healthy weight range because of a method that’s sustainable for the rest of my life. I can still enjoy great restaurants and the occasional take away without fear or guilt. The evidence on the benefits of this way of eating and the implications for those of us seeking to avoid cancer continue to mount. I am certain that I am doing the right thing for myself, my body and my family.

I know it’s still possible that the cancer could come back. Cancer is like that. But I don’t dwell on it. I enjoy my life. No, it’s more than that. I CHERISH my life, because I finally understand how precious it is.

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11 thoughts on “Six Months Post Mastectomy

  1. Haven’t left a comment for a while, though I read all of your posts – absolutely loved this one – so raw and honest – would love at sometimes to talk to you about your thoughts re your new blog “we are all dying” – have you read Anita Moorjani’s book “Dying To Be Me” – each and every day now I try and follow some of her principles – please read it if you haven’t – I can mail it to you as it can be hard to find xx

  2. Congratulations on your 6 month anniversary!! I have been following your blog for a few months now and have found that you have put into words so many of the emotions and thoughts I have had through my journey. I am having my bilateral mastectomy this Friday, and your photos were the first I saw of the ‘chest after procedure’. They were confronting but also gave me a realistic image of what to expect.
    I thought I was up on all the breaking news, but missed the latest regarding the vaccine!! I am so excited that there is so much research being done on Triple Negative – a term I only heard about last August after my lumpectomy. I thank you for your wonderful blog and wish you all the best for future. I look forward to reading your next instalment and hearing how well you are doing, Julie.

    • Dear Julie,
      Thank you so much for taking the time to comment. Knowing that the blog is helping other people makes me very happy.

      I posted the photos because I found it very useful to see the images from ‘the scar project’ and was mindful that not everyone was able to access them. Seeing women that had been through the procedure helped me to decide not to have reconstruction. I agree that these images are confronting but I was also able to look at them and say “I can live with that.”

      My very best wishes for a successful operation. I was up and walking the next day, even though all I could do was circle the ward. I highly recommend it. Don’t be afraid to ask for more pain relief if you feel you need it. Same goes for having a good, long cry.

      I wish I could come and hug you afterwards and let you see that life after mastectomy can be wonderful.
      love and best wishes
      Meg

  3. Your blog is wonderful, my best freind was diagnosed with triple neg breast cancer nearly 1 year ago and has finished chemo and half way through her radiation. i found your blog when she was diagnosed and reading what you have written and help me as best possible learn more about triple neg, breast cancer and the emotion that goes with it. Your strength and honestly is amazing and not many people could be as open and honest as you are in your blog but because you are it has helped to understand your emotions. I just had to comment as i have being wanting to for a while but after i saw your post with the research from the Mayo clinic i was just thrilled!! triple negative always has so much negativity to it, even its name is horrid!!! anyway i emailed the Mayo clinic about my friend to see if there is any possiblilty about her being a part of this trial and they replied to me within 48 hours thanking me for the interest etc etc. SO i told my friend straight away what i was up to and so she emailed them from my reference and they RANG her and want to she her records from the oncologist and said that there is a very good chance of being a part of a trial they have offices all over the world, she was thirlled!!! i was thrilled. She said to me that even to be a part of this research for future triple negative diagnosis to try and find a better way to treat it would make her feel like she has done somthing for the cause….anyway thankyou, you have made a difference to me and now her, i wish you a long and beautiful life MIchelle xx

    • Thank you so much for your beautiful comments, Michelle. It’s always great to hear that the blog has helped someone. What I’m really excited about is your comment that the Mayo have offices all over the world! It’s clear from your email that you’re in Australia so that means that I might be able to be part of the trial too! I hadn’t even thought to ask! THANK YOU SOOOOO MUCH!!!
      My love and best wishes to you and your friend.
      Meg
      X

  4. Hi meg 🙂 thankyou for your response i read it with warmth and a big smile!!! YES im from SA and YES you should contact them!!! its funny after i clicked on the link from your blog to the video of the research breakthrough without thinking i just got onto the MAYO clinic website and found the right area and emailed without checking with my friend. i just thought if this is something that may help her in the long run then i will do what ever i can to see if she could be a part of it and after the returned my email and she emailed as im not up with all the different chemo drug names they called her!!! they are getting her to sign a privacy form so that they can have a look at how she has being treated here and they said that the trail drugs can be dispensed to certain place here. Beginning stages but at least her details are logged with them so get on it too xx Michelle

  5. Thanks again Michelle. I just used the general contact email on their website. If you have one specifically for the research team I would greatly appreciate it. Thanks again for letting me know about this. I’m also sharing it to my Facebook page for other women with triple neg. XX

  6. Hi Meg and Michelle,
    Thank you both! I have been reading about the trials for some weeks and hadn’t even thought about being able to take part from here. I have emailed the Trials section also and will let you know what happens. Or is there a special area to email to? Thanks again. Michelle R x

    • Hi Michelle,
      You’ve sent it to the right place. I got a response back from my original enquiry directing me to the medical trials section of their website and I sent a new message to their ‘overseas’ address.
      Good luck. Hopefully some of us get to participate.

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