You Don’t Look Sick: ‘I get asked if I’m sure I have terminal cancer'
Living with an invisible illness isn’t easy – you live with a whole range of symptoms and problems but often people don’t understand you are ill because they don’t see them.
You Don’t Look Sick is our weekly series looking at the issues around living with a long-term condition that people can’t see.
Alejandra Solis Leal is 38. She has stage 4 terminal breast cancer.
The mum-of-two was diagnosed last year.
She says that as the chemotherapy she has had hasn’t led to her losing her hair and she still does day-to-day things like taking her kids to school, when she meets people, they don’t always believe that she is dying.
Alejandra, who works as a publicist, explains: ‘My dentist asked if there were any changes in my health so I told him, he laughed and I laughed, and then I cried and then he stopped laughing. He was mute for a while, and said “but you look fine, you have hair… are you sure?”
‘After that he didn’t want to charge me, but I explained that I didn’t want pity and paid the full amount.
‘The worst is when I go to the hospital with my mum and dad or anyone who is older than me.
‘People always approach me saying: “It’s so good of you to take time off work to come to this appointment with them.”
‘They assume that my parents are the patient and I have to explain that I am the one who is sick.
‘When some people find out they ask if I have the correct diagnosis. I’m like: “yes, a doctor told me.”’
Katie first started to experience symptoms around Christmas time 2017.
She explains: ‘I started feeling a bit funny, I was out of sorts and I didn’t feel right. January came around and I went completely off wine and I was overheating constantly.
‘I was having a shower and thought I would check my breasts just in case. I ended up finding a lump.
‘Initially, I thought I was just being paranoid, but I decided I should probably see the GP just in case.’
Katie was sure it was nothing but made the appointment and the doctor felt that she needed to be referred just in case.
‘My husband and I agreed that something wasn’t right. We thought it could be early onset menopause, although I was only 37 so I was too young,’ she says.
‘I went to my referral appointment at the hospital in February 2018 and a lovely Scottish woman did a scan.
‘We were having a lovely chat all about Game of Thrones when all of a sudden, her face dropped, and she looked concerned.
‘All of a sudden there were four doctors in the room. They looked worried and told me that I would need a mammogram and a biopsy.
‘I just kept asking “what’s going on?” I knew something was wrong.
‘The woman told me that they would come back to me with my staging and a treatment plan, so I guessed what it was.
‘She wasn’t actually allowed to diagnose me there and then as it wasn’t certain, so I said to her “If I have cancer I am going to need my mum who lives in Mexico, do I need to tell my mum to come to England?”
‘She said it would be a good idea to ring my mum, so then I knew. I had cancer.’
Two weeks later, Alejandra was officially diagnosed with breast cancer, and the day before her daughter’s fourth birthday, she had a mastectomy.
She says: ‘After that I was terrified, but I felt ready to undergo the follow up treatment. I even had my eyebrows tattooed on and had a wig fitted in preparation for when I lost my hair.
‘But at my next appointment, I was told that they found more tumours than they expected in my scan.
‘They then scanned me for everything and they found that it had spread into my bones and that it was stage 4. It was incurable.
What are the signs of breast cancer?
Some of the signs and symptoms of breast cancer include:
- a lump in the breast
- a change in the size or shape of the breast
- dimpling of the skin or thickening in the breast tissue
- a nipple that’s turned in (inverted)
- a rash (like eczema) on the nipple
- discharge from the nipple
- swelling or a lump in the armpit
- pain or discomfort in the breast that doesn’t go away
Macmillan
‘I was completely horrified when I found out. I didn’t want to believe it. I felt like I was watching a movie, a very surreal one.
‘They told me that my prognosis was 4 to 5 years, but I know people living with metastasis who have gone on to live for 15 years upwards, so I am hopeful.’
Now, over a year on from diagnosis, Alejandra is learning to live with her terminal diagnosis and tries to keep life as normal as possible.
She takes oral chemotherapy tablets to try to stop further spread of her cancer. It is already in her spine, femur and ribcage.
She says: ‘Most days I’m ok, I get my kids to school, I meet friends for coffee, do chores around the house and rest.
‘My energy levels whilst on oral chemo are quite low. I take those for 21 days and then have a week off. I’m also on hormone treatment.
‘Bad days are bad (though thankfully these aren’t very often) – my third week of chemo is the worst. I just feel exhausted, so I tend to drop my kids at school and go back to bed.
‘I am lucky that I have very few symptoms and side effects from my treatment and I look the same as normal but sometimes it’s really hard – people treat you the same as always, but often I am battling fatigue or joint pains.
‘They are part of the invisible side of my illness, people have limited sympathy because I’m not outwardly struggling.’
Alejandra has had a huge amount of support from friends and family, as well as from people online.
She says: ‘I am very lucky to have an amazing support network, my husband is great and my mother-in-law lives down the road.
‘I also have incredible friends, plus of course my family in Mexico who come and visit often.
‘My Macmillan nurse is called Sharon and she’s lovely. I got assigned her the first time I went to the hospital.
‘She’s been right there with me through all the treatments – literally! She held my hand all them all. She’s the first person I call if I am worried about anything.
‘She’s my best friend at the hospital, she also sorted out my counselling sessions. People sometimes forget about the emotional side of being diagnosed with cancer and having treatment, so having a counsellor has been really important for me.
‘There is also a huge online community on Twitter and have made many e-friends. At my last hospital appointment I was looking around the waiting room, feeling sorry for myself and I noticed that the majority of the people in the waiting room were very old.
‘I just thought to myself, “why am I here? I am young, I have children.” I was feeling so angry and cheated by life.
‘I tweeted about it. In response to my tweet I got over 300 people sending me their photos all agreeing with what I was saying.
‘They were all young, they were all stage 4 and living with cancer. Like me, they agreed that the ‘Hollywood stereotype’ tells us how someone with cancer is meant to look – wearing a head-scarf, or with no hair or eyebrows. As a result, because we don’t look like that, some people don’t believe I have cancer.
‘You, Me and the Big C’ was one of the first things I followed and the girls’ openness really helped me to understand that you can live life with a stage 4 diagnosis.’
Alejandra started a blog called The Very Honest Diary of a Mum Dealing with Cancer to help her process her thoughts about her cancer,
‘I find writing it really therapeutic. It normalises my diagnosis and also helps people around me understand what’s going on.
‘It then makes the conversation normal, we can talk about everything else without having to go into the whole cancer disaster because they’re keeping up to date with that side of things by reading my blog.’
Part of why she writes about her journey is to show that anyone can be going through cancer and we need to stop judging them.
She says: ‘It would be helpful if people stopped judging others – you never know what the other person is going through.
‘A mum at my children’s school drop off once asked me why I was ‘so grumpy’, but I wasn’t grumpy, I was feeling awful and just taking the kids to school was a massive effort.
‘In the end, I just said I was tired as I couldn’t be bothered explaining.’
Alejandra is also working with Macmillan on their Let’s Talk About Death campaign to open up the conversation about how prepared we are for what happens after we are gone.
How to get involved with You Don’t Look Sick
You Don’t Look Sick is Metro.co.uk’s weekly series that discusses invisible illness and disabilities.
If you have an invisible illness or disability and fancy taking part, please email [email protected].
You’ll need to be happy to share pictures that show how your condition affects you, and have some time to have some pictures taken.
Source: Read Full Article
