health

'My terminal cancer diagnosis and its excruciating impact on sex with my husband.'

Discovering I have cancer seems to have changed the whole way I feel about my body. An uninvited, hostile guest has taken up residency inside me and has assumed control of nearly all aspects of my life.

It dictates far too much and it makes me feel like my body is no longer wholly my own. Instead a battle is being waged inside me and I don’t feel entirely like myself. I’m no longer just ‘Rachael’. I am Rachael plus cancer. I feel somewhat angry at my body for betraying me. How dare it let cancer in and how dare it let it eat away at so much of me, that there is no way to cure me. There’s no chance of ridding myself of this insidious disease. It is now with me for the rest of my life.

My diagnosis is confronting. I had thought I had a sore back, possibly caused by a herniated disc. I was shocked after a routine MRI and CT scan to learn I had cancerous lesions in my liver, lungs, chest, spine, shoulder and hip. My primary is technically unknown, but the pathology indicates it is colon cancer. I never had any symptoms other than a sore back.

In the fight to prolong my life, I have had to submit my body to my medical team. I have been poked, prodded, scanned, injected and biopsied. I have been hooked up to monitors. I have had so many vials of blood taken from me, that I wouldn’t have been surprised if someone saw my arms and mistook me for a drug addict. I have undertaken radiation and had ugly lines in permanent marker drawn on my bare skin. I have been taking a cocktail of drugs to deal with my pain.

"If I was feeling repulsed by how it looked and felt, how could he get past that? If I couldn’t separate myself from the cancer, how could he?" Image: Erin Neale.

And of course I have been infused with chemotherapy drugs via a port that has been inserted under my skin just above my right breast. I am attached to a chemotherapy bottle for 48 hours each fortnight. The chemotherapy is exhausting. The steroids gave me acne and with them I gained weight. Suddenly my clothes didn’t fit and I have unsightly lumpy deposits of fat under my skin. I am the heaviest I have ever been and my face ballooned. When I look in a mirror, I hardly recognise myself. None of this makes me feel attractive.

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When I was first admitted to hospital, I was told that a tumour on my right hip meant my hip was in danger of shattering and I was told I would need a hip replacement. For a week I was not allowed to put any weight on my right leg and I became a true invalid as I lay in a hospital bed unable to even get myself to the toilet without the help of a nurse. The only way to shower was to have a nurse to wash me. Exposing one’s naked body to a stranger feels quite humiliating. All the lumps, bruises and stretch marks are exposed. There’s no hiding behind some fabulous clothes. It’s all there on display. And then you start to get used to it, this loss of dignity. It becomes part of a new normal that you relinquish part of your independence. It is impossible to feel attractive when you are so exposed.

My doctors eventually decided I didn’t need a hip replacement. Whilst this was good news, it was psychologically difficult to suddenly start walking, especially when I was warned that even with radiation, they could not promise that my hip wouldn’t break in another three or six months. One of the side effects of this, is that I was left feeling so fragile. My fear of being intimate with my husband started not long after I came home from hospital.

Rachael carries a top with the Shakespeare quote, "Though she be but little, she is fierce." Image: Erin Neale. [/img_caption]

What if an act of love actually caused more damage? I also wondered how my husband could love this broken body of mine. If I was feeling repulsed by how it looked and felt, how could he get past that? If I couldn’t separate myself from the cancer, how could he? There is nothing sexy about the word ‘cancer’. It’s a word people actively recoil from and thus I felt like my husband should be recoiling from me and this broken and battered body. I feel like having cancer means I am harder to love.

This is a difficult situation as I believe intimacy is a part of a healthy marriage, but I feel so scared and vulnerable. I don’t ever want to be pitied by my husband. I want him to love me. I want to love him but it takes courage and understanding and communication. I know my husband still loves me and I know I must still be beautiful in his eyes, but it’s so hard to believe when you feel life has so cruelly tricked you. My thoughts become irrational, illogical and the fear sets in.

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My husband is a beautiful, kind and patient man. He would never put pressure on me to do something I didn’t want to do or wasn’t comfortable with. I adore him; I adore our life together and part of my fear comes from the fact that I am so frightened about the uncertainty of my future. I am frightened that the emotions I have inside me will come tumbling out of me and I will lose control of them. This is not to say I’m not trying.

"Together, we are working through this and I am trying to regain my confidence. " Image via iStock.

And the few times I have allowed myself to ignore the harsh reality of my diagnosis, it is wonderful and brings us closer. But it is not that simple; it is not that easy. Together, we are working through this and I am trying to regain my confidence. I need to remind myself of the importance of letting go and trusting in love. I need to stop looking in mirrors. I need to draw upon my inner strength and allow myself to temporarily forget that I am at war with my body because I am not at war with my husband. It is my husband who has reassured me with these words:

"I know you know the answer. You just need to believe it. Let go a little and everything will be so much easier. Hold my hand, take a leap of faith, and we can fall together. I love you with all my heart."

I need to remember to not be afraid of love.

Rachael Neale is a 43-year-old woman who is married with two children aged 11 and 13. She is a senior English teacher and she loves life. Rachael was diagnosed with terminal bowel cancer in July this year.

Photographs of Rachael are by Erin Neale.