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My Body Has Become An Open Wound

Chemo saved her from cancer, but took away the ability to enjoy sex and intimacy. In an interview with Agents of Ishq, Amulya*, cancer survivor, unpacks her emotions of life post treatment

Q: What was your relationship with your body before being diagnosed with cancer? 

A: Right from my teenage years, I’ve been more tomboyish than girly. I look petite and dainty, but mentally I’m more one of the guys. Makeup, skirts. . . all of that was never something that I was interested in. But I was happy with my body in the sense that I wasn’t overweight, I wasn’t unhealthy, I was fit, I was running around, I looked okay. I never needed to use any products.

Q: The treatment lasted a couple of years. How did that change your body in terms of your energy levels, the things that you could do? How did it affect other things about your body that you like? 

A: Cancer is hereditary in my family. At the age of 37—I am 45 years old now—I tested positive for the BRCa gene. While it was a shock, I also knew that lots of people have it and that I would be fine. So, it wasn’t earth shattering. My kids were three and six years old at the time, so I also didn’t have the luxury of being devastated. 

With the treatment, the first thing that happened immediately was the surgery. They took the left breast out completely. Within about six to eight months of the mastectomy, we realised that the only sure way of dealing with this was to completely neutralise every single risk of getting cancer. Because of the genetic propensity, I was in the 85% bracket where it could go into my right breast, my uterus, ovaries. It could spread anywhere, and it would just mean that I would have to keep going for surgery and getting chemo, every few years. 
I got my right breast, my uterus, ovaries, and everything else removed too. The doctor kept saying that while having them did pose a health risk, these were healthy body parts. I told him, “sure, they may be healthy now, but not healthy three months down the line. I don’t want to finish 36 sessions of chemo and then realise that now I have to do this all over again.”

It wasn’t even so much a discussion, but more about me marching into the doctor’s office and saying, “I have thought about this long and hard. I have read up what I can and I need you to do this. If you’re not going to do this, I’m just going to go to the next available surgeon and get it done.”

So, for the first year, it was more about doing the chemo, doing the radiation. It was about eating healthy, getting my strength back, keeping your mind occupied. Life kept me busy and the pain was being managed. I was on really high steroids. I was a patient. 

Intimacy and sex with my husband obviously took a backseat. There were a couple of times when we attempted it, but I was not comfortable in the sense that it was painful. I was also just not ready. He was fine with it too. We put it on the back burner and went on with life.

Q: Did you discuss the surgeries and the effects of the therapy on your body and intimacy with your partner? 

A: To be honest, it wasn’t done simply because it wasn’t something that I may have read about it in passing when I was taking off your fallopian tubes and your ovary that affects your hormones. I knew that my hormones would be affected whatever I do. The doctors told me that it would put me in a forced menopause where I would never have my periods at all and that kind of has a cascading effect on hormones again. 

I did realise that hormones will be affected. I didn't realise to what extent and how much. I'm only finding that out now. 

For me, the surgeries meant that I would atleast be alive, as opposed to being tied to a hospital bed and having to keep doing rounds and rounds of chemo and watching each body part being taken off every few years. 

And so, at that time we (my husband and I) weren’t in the headspace to talk about intimacy or sex. It wasn’t a priority. 

Q What do you mean when you say you’re only now understanding how much your hormones would be affected? 

A: The radiation, for example, blew up my thyroid gland. Now I have thyroid on top of everything else. 

The thyroid gland has complicated the whole hormonal imbalance. Now, the sex drive is at a bare minimum. There is no desire left anymore, there is no energy left anymore. There are body image issues. 

At the time of the surgery, I didn’t have medical insurance. So, I thought “it’s all cosmetic, who cares, I’ll live without my boobs”. Now, every time I look at myself, I wish I had gone ahead and got my reconstruction surgery done because I don't like it now. Now, I actively really don't like my body. I don't want it anymore. 

I wear a prosthetic. It's annoying, heavy and it’s giving me a bad posture. I can never wear loose tops any more. 

Yesterday, for the first time in my life, I used a toner because my skin has lost all elasticity. It’s just become so dull. I'm very careful about the kind of clothes I buy now because nothing that has a V-shaped neck can happen. 

The worst part is when I need to go do a facial, I can no longer go for a massage. Because they put their hands near my chest. There is no flesh there to massage and it hurts. I don't like anyone touching me there. I still can’t feel my armpits. There is no sensation anymore. So, the body has just become an open wound, a war zone. 

The other thing is the mind fog. No one ever tells you about that. But the chemo really gives you brain fog. The thyroid is not helping either. There are vast spaces in your mind that are now completely blank. As a journalist, words used to be my forte. And now I just struggle with simple things. Just remembering. The good thing is that now I have pens everywhere and I have chits of paper all over the house like okay- remember this, remember this, remember this, do this, do this. 

So, mentally it's kind of slowed me down. Physically it's definitely slowed me down in terms of emotionally connecting and having a healthy relationship with my husband. 

And I feel sorry for the guy because it's been years since he's had a good round of sex and I'm sorry that I just don't know what to do. Because, one, it’s super painful. Secondly, I just can't be bothered. I don't feel good. I don't want to have anything to do with anything. And it's just difficult. It's a struggle. The couple of times we managed to have sex it was hugely painful afterwards. And I just don't think I want to do this again. He says it’s okay, that we don’t need to, but it's not fair to him. So, the guilt is also there. Everything that I have gone through, he's been on the sidelines. He may not have carried the scars, but he is feeling the same shit. He's carrying the burden as well. 

There is painful vaginal dryness because mentally, you're not really stimulated, because your hormones just don't exist anymore. The few pleasure points that used to be there have also been screwed up. 

Q: What are the moments of tenderness or love, that can come in a relationship at times like this, then? 

A: I can’t take squeezes anymore. Even if my husband has to put his leg over mine it’s fine for three seconds. After that I tell him it’s too heavy. 

Earlier we used to have really good fun in bed like playing, kicking, and laughing, it used to be fun. And now he attempts even one little thing out of all those crazy things that we used to do. It’s just hurting, hurting all over because the bones have lost the capacity to take the weight. 

So, for moments of tenderness, yes there are a lot of hugs. For the longest time, it’s been this one thing that he started doing ever since I got my stitches removed and recovery has been happening. The last four, or five years, it’s been a massage. He’s the only person who can give you a back massage without any flinching, so legs, back, he will sit. 

But I can’t bear him coming to the front of me. I also refuse to let my husband see the surgery scars. I refuse to let him get close. 

It’s completely off-limits. The chest, the stomach, the front part of my body. I just can’t bear touching. It’s something that I’m uncomfortable with. So, that is where tenderness comes in right now. For us, it has become just that massage. Like head to toe, the back, the head, the legs. And I’ll sit there and massage him as well of course. It’s nowhere close to a massage but that’s about it. 

Q: What were the things that your partner did or things in general that made you feel supported or made you feel loved in those situations where everything was falling apart and scary?

A: The one thing that really helped was no matter how tired he was or I was, he would just sit and press my legs every day. It started with that because at that time I couldn’t even sit straight after surgeries and all, even my back or, I couldn’t sleep on one side. 

Things like making sure my water bottle is filled so I don’t have to get up in the night. He’s taken over the kitchen sort of space, he’ll do the cooking now. For a while, it was just him switching to coffee. 

In that sense, I think I have kind of won the lottery in terms of support and a caring and loving partner. But there are days when I just want to fling a pillow at him—especially now, as time has gone by and slowly, slowly things have kind of become normal. 

Every once in a while, he’ll ask why can’t we have sex. 

I’ve thrown some literature at him; I’ve told him how I feel and he says all that doesn’t matter to him. “It doesn’t matter if you have your breasts or not”. But it’s not the cosmetic part of it. He doesn’t understand hormones. 

So, we’re okay as we are in every other aspect of life but in terms of a sexual relationship, it’s just not there. That’s what cancer took away.

Q: You mentioned reading some literature, etc. all in. Are there other books, or other people that you’ve spoken to who sort of helped you perhaps understand this experience a little bit more? 

A: I've had a lot of conversations with people and read a lot of stuff on cancer in general. But now five years down the line, why isn't anyone discussing how this leaves you? 

The fact is that the chemo drugs are crazy and they take years to get out of your system. Why is it that nobody tells you that simple radiation well it's not simple really but radiation can literally throw up in your thyroid? I've never had thyroid in my life and now suddenly it's hypothyroidism. 

I know a lot of people who've been through similar breast cancer experiences who have had hysterectomies and they're all in a slightly older age group or in a slightly different place in life. There were women who said that they wanted the breast reconstruction done there and then. This is something that I found, especially abroad. 

I remember, the doctor didn't even ask me once if I would like to go in for breast reconstruction. It wasn't even an option on the table and at that point again it wasn't something that occurred to me really, but I remember that when I went again for something else to another doctor and he asked, “But why would you not consider a reconstruction surgery at the same time? That's a decision you should make in advance.” 

How come nobody told me? Why would they not counsel women when they are diagnosed and say these are your options? It’s as simple as that. Why is this not made part of the treatment process? Why are you leaving women to deal with this on their own? 

Q: It’s terrible to have to go through it so blind not knowing yeah what you're going to encounter next.

A: One of the side effects of the hormone replacement drug that I was supposed to take for five years, was that you could just die of heart failure. And the doctor said, “No, no, that’s a very extreme 0.01%.” I corrected him. It’s like 4%. And, considering the odds of me getting cancer at 36, I think I would have liked to know the odds, even if they were 4% and not 44%. So, I refused to take it. 

I just stopped that medication. The doctor said he couldn’t continue my treatment if I behaved like this. I told him that I took the chemo, I completed the radiation, I’d taken two years of hormone therapy by then. But it was making me sick, I cannot do this. 

There was no alternative therapy. So, I thought, considering I’ve gone into all of this so blind, I might as well just stop this and I’ll deal with the consequences as and when they come up.

Q: Post-treatment, were you able to find a new meaning or discover new ways to love yourself? 

A: This is where the struggle for now is that the treatment part is over. This is the next bit of the struggle that I'm realising I'm in the middle of—coming to terms with the body that I am now left with, the limitations of this body and how to make it work for me. And so, this is something that I am slowly making my way through. I don’t have answers. I don't know. 

So, there might be a good day when I might walk from my house to the station and then there might be a day when walking from my bed to the kitchen is a lot. 

In terms of body image, it is at its lowest. I don't think I have ever felt this bad. So again, because of the thyroid, because of the hormones, it is now overweight. So, the day that I walked into the hospital for my diagnosis and the nurse weighed me before my surgery, I was at a very cool 52. And, it was comfortable. I was happy.

I’d be picking up jeans off the rack. I would fit into a small. I now fit into a large or an XL. I have never even been through the medium stage. I just kind of bypassed it completely. 

I used to love swimming. I used to love being at the beach. I used to love being in the water. Now I’m just constantly worried if my fake boobs falling down. 

I don’t want to put on my prosthetics. I want my body back for God's sake. And I’m not even talking about the strength . . . at least make it look normal. I can't wear certain clothes. I can't go in the water until I'm prepared five levels down where I have a second bra at home, which has the inserts. I have waterproofs. I have a swimsuit that basically is up to my neck. And even then, I'm extremely conscious of them sagging. I am wondering if they are hanging down? Are they moving to my waist? I mean, where is my little so-called boob? It’s not fun anymore. It’s not happy. I can’t just pick up a whim and go travel anywhere. I have to really be careful.

That is where I'm stuck at because I don't like this thing I have become and cancer treatment, while it may have given me my life, it has taken a collateral that was just too much and it wasn't with my knowledge or my permission. But take the hand you get.

*Amulya is the pseudonym of a cancer survivor who shared her journey with Agents of Ishq in an interview with Div Rodricks

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