Fertility and the Power of Saying No

Just a couple of weeks ago, a friend and I were talking about genetics – I can’t remember why or how it came about. At some point though, I blurted out ‘well, you know, my dad definitely has one blue-eye gene, so he might have passed it on to me, so I could technically have blue-eyed kids…’

I caught myself right at the end. Nope. Technically, I could not.

It felt… bizarre. For a second, I had completely forgotten about that little truth of mine – how, thanks to cancer, I will not ever be able to pass on any of my genes to a child.

It didn’t hurt. It was like an out of body experience. I could not believe I had uttered those words. I know very well that I cannot have kids. It couldn’t be me saying those words. It just felt… wrong.

Later on that night, lying in bed and thinking back about what happened that day, I did get the wave of feelings I had avoided earlier. It was such a simple thing to say. It just was the way I had always thought, up until two years ago. Passing down my genetic make-up. But that’s no longer an option.

Cancer and fertility are an incredibly complex topic. There are so many ways your fertility can be compromised during cancer treatment – chemo, radiotherapy or surgery can all affect your reproductive organs in their own way, no matter the type of cancer.

For me, it was very clear cut (pun intended). Womb cancer treatment involves removing the womb. No womb, no pregnancy. To be safe, the doctors also recommended a bilateral salpingo-oophorectomy – to those of us who are not doctors, that means surgical removal of the ovaries and fallopian tubes.

I would later be told that actually, that extra step might have been an unnecessary precaution. The biopsy had led the doctors to believe my cancer was Stage 1, Grade 2, when it actually ended up being classified as Stage 1a, Grade 1. Less aggressive, and less likely to come back. I would probably have been fine keeping my ovaries.

But there I was anyway – 27, childless, no plans of having children in the near future, being told that my womb and ovaries would need to be removed.

There are options for people in my position. Options which were presented to me – I would not be allowed to undergo surgery without speaking to a fertility specialist first, to make sure I knew what I was getting into. 

It only took me half a day to make my decision. Within maybe three hours of my diagnosis, before I even knew what the options were, and what they entailed,  I had decided that I did not wish to do anything to preserve my fertility.

For weeks afterwards, I would be told that I could not decide without speaking to the experts, that I could still change my mind, that it was important that I consider all the angles and the possibilities that I was turning my back on. It was a very difficult time – not because I didn’t feel confident in my decision, but because I got the feeling other people were trying to tell me they knew what I wanted better than I did. I got patronised by male and female doctors, friends and family alike, but I never once changed my mind. 

Almost six weeks after diagnosis, I reluctantly attended the fertility appointment that had been scheduled for me. I sat down in a cold little room with the fertility specialist, a medical student, and a representative from a ferility research organisation. I listened to what they had to say, and I told them what I wanted – with tears in my eyes and my voice, but a certainty that did not waver.

It had been a gut feeling, but it was also a very rational decision. More importantly, it was the right decision for me.

I am not a very motherly person. I don’t like to dot on anyone, I have no patience, I hate any kind of mess.

I have strong values, I have things I care about, I have goals I want to achieve. None of those are dependant on passing down my genetic make-up. 

Although I am very much in favour of people using science to have children if they so wish, it was not something I felt was right for me.

Egg freezing (or more accurately in my case, ovarian tissue cryo-preservation) is extremely costly.  It involves using an incredible amount of resources – money, electricity, space, etc. – to give a person a small chance to use their eggs at a later date. Because we were in the UK, and the NHS was handling my case, my tissue would be stored at no cost to me for five years.

Even knowing that I would not have to pay for having the option, I did not find preserving my genes worth the environmental and financial cost for the taxpayer.

I also know from friends and family alike the emotional, financial and physical cost of IVF programmes. In my case, it would not only be IVF (with a below-average chance of success, due to the method and timing of harvesting my ovarian tissue), but also surrogacy.

Now don’t get me wrong – I am absolutely in favour of using science and doing whatever we can to help people have children of their own if it is the right choice for them. Surrogacy is a complex issue that I fully support when done respectfully, voluntarily, safely and in the right conditions for everyone (I know some people will ask me to hand over my feminist card over this, but I will stand my ground). However, it is not right for me.

I do not believe in fate, but I believe in not spending my own time, energy, resources and feelings into something that cannot happen naturally. In the choice between not having a biological child at all and having a child conceived from cryopreserved tissue, in a lab, and carried by another woman, I would choose option one every day of the week.

I am environmentally conscious, and the eco-footprint of a child, especially one whose conception demanded so much effort and so many resources, is something that I am extremely aware of. It feels like I would be making a decision that goes against my principles. And if I do not feel 100% comfortable with my decision in view of my principles, I do not think I should bring a child into the world that way.

I also believe that how you raise a child, and the love and support you provide them with, is more important than the genes you pass on. That is what makes you a parent.

And that I could still provide, if I want to one day. As of today, I do not know if I will ever want to, or if I will ever feel ready to foster or adopt a child. But that is one door that I am not closing as, contrary to the idea of preserving my fertility, it is in line with my principles, and it is something that I would feel comfortable with.

These are the answers that I gave the fertility specialist. Almost 21 months after that day, I still believe every single one of the reasons I gave.

This summer has been one of reflexion. So many of my friends and family have announced a pregnancy, or have actually given birth. I have met half a dozen babies and toddlers, played with them, observed them, cared for them.

I do feel something when I see my friends pregnant, or interacting with their children. But it is not pain, it is not jealousy, it is not hurt.

I guess if I had to define it, I would say it is the knowledge that they have something that I will never have. It is knowing that they are experiencing something that I will never understand fully. There is a detachedness to the way I act and think around them.

I love meeting them. I love talking to my friends and family about their experiences as new parents. There is an awkwardness, but it is only in my head, and it does not prevent me from being happy for them.

I am comfortable with my decision. It is not an easy decision, and I do sometimes feel a sort of sadness that I will not have the chance to share the same experiences as my friends.

I do not regret it. There has not been one day, in the last two years, where I told myself I had made the wrong choice. When you are struggling as I am with survivorship, having that assurance is everything.

Searching for Answers: Looking for Someone (Else) to Blame

Blame is an interesting thing. It comes and goes, it tries to find a target and when it does not find one, it latches onto you and refuses to let go.

Ever since my diagnosis, I have been looking for an explanation. A clear, scientific reason, something to put my mind at rest. A definite answer: this is what caused your cancer. Your genes are faulty. It is hereditary.

I am not someone who believes in coincidences, in things happening at random. I don’t believe in destiny, in the universe, in a higher power causing things to happen.

I believe in science, in clear and cut answers, in data and analyses.

Womb cancer is caused by cells in the lining of your uterus (or the muscle, in some rare cases) mutating and replicating to form a tumour over a number of years. Womb cancer develops slowly. What causes those cells to mutate? Usually, exposition to excess oestrogen over many years is the main factor. This explains why women who have been through menopause represent over 75% of those diagnosed with womb cancer, and only 1% of cases are discovered in women under 40. Time and age are the main risk factor, although people with a family history of womb cancer and specific gene mutations are more at risk of developing cancer at an early age.

There are risk factors that make it more likely to develop womb cancer, factors which all increase the levels of oestrogen your body is being exposed to over the course of your lifetime: being older (the older you are, the longer you have been exposed to oestrogen), being overweight, having never had any children, starting your period at a young age or undergoing menopause late, having polycystic ovary syndrome, having diabetes. On the other hand, taking the combined pill for over three years is thought to lower your risk, and so is having children. No one reason in itself means you will develop womb cancer, and even a combination of those risk factors might not lead to cancer later in life.

I was 27 when I was diagnosed. I was overweight, I had PCOS. Both of those are risk factors – but they cannot explain why I had womb cancer at such an early age. In addition, I had been on the combined pill on and off for about ten years. I did not have any children, I do not have diabetes, I have no family history of cancer, and genetic testing showed no genetic mutations known to increase my risk of having any type of gynaeological cancer.

The doctors were puzzled. I remember the looks of shock, the disbelief on their faces. The times I was told that the results of the biopsy had been completely unexpected. When I was told there was no way it could be cancer at my age. The trainee nurse who looked after me after surgery, and was absolutely overwhelmed when I told her why I was there. She was my age.

And I was told there was no explanation for it. It just happened. Randomly. As it stands, science cannot provide a definite answer.

I hate it.

I hate not knowing. I hate it, because I can only continue searching for answers.

In the meantime, I can only blame myself.

I wake up in the morning angry at myself. Feeling guilty. Feeling like it is all my fault.

Feeling like I deserved it.

Blame is powerful. It started impacting all aspects of my life. I am angry at myself, I am disgusted at myself, I am scared of myself.

It has affected my self-esteem. I struggle to feel pride in anything I do – I just feel like no matter what I do, it does not matter. I failed myself in another, much bigger way.

Compliments make me feel awkward. People do not know how much I am undeserving of their praise.

I cannot fathom why people would want to hang out with me – I personally would not. Look what I did. Look what I caused. I am a failure and so is my body.

The only other entity I can blame is my bad karma. Let’s be honest, I have never had the best luck in the world. So these days, when I want to keep things light and make myself feel better, I tend to blame anything that happens on my karma. Cancer? Bad karma. How my operation was cancelled the first time around? Bad karma. Got burgled a month before my diagnosis? Karma. Got all my parcels stolen in my building for months, when others stayed untouched? Karma. Strong side effects to my covid jab? Karma. Wrong vaccine batch? Karma.

I do not really believe there is anything to it, but it takes the blame away from me every now and then. Pretending there is something else at play here allows me to breathe a little bit better.

I will not stop looking for answers though. I continue looking at all my leaflets about womb cancer, I read studies, I stalk the forums about womb cancer, hoping someone will have missed something. I might be in denial.

I was told that I should undergo genetic testing again in about five to ten years. Science evolves, and even though nothing was detected based on the current available science, there might be something at play here that we have not discovered or identified yet.

I am holding out hope. It seems strange, to be hoping for something to be inherently ‘wrong’ with your genetic make-up. But at least it would be the beginning of an answer. Maybe that way, I would be able to turn the page and focus on the future.

I know I am not the only one. It is common, and to the people living through the same thing, I want to say: science will evolve. It might not be the case for me, in my lifetime, but I will be the case the case for other cancers, other genetic mutations. Some of us will get answers, and some of us will not.

Well, with my luck it’s not gonna be me, is it.

A Number Is Worth a Thousand Words

I have always liked numbers. I hate maths, do not get me wrong – but numbers themselves are comforting. Counting makes sense. Keeping track makes sense.

I like to see numbers. Work out how many days, how many hours, how much time I spend doing this or that.

And when I am particularly anxious, when I struggle to get my brain to rest, I count. I take notes. And I write down the numbers that made up my cancer journey.

538 days since diagnosis.
473 days since my hysterectomy.

Two days until my next check up.
117 days since the last one.

Type 1.
Stage 1.
Grade 1.

31 hospital appointments so far.
Five hospitals.
Two counties.

Four appointments, three hospitals in the next ten days.

146 phone calls.

Nine gynaecologists.
Two nights in the hospital.

Nine blood tests.
Two ultrasounds.
One X-ray.
Two MRIs.
One biopsy.
One operation.

Two ovaries, two tubes, one womb.
No ovaries. No tubes. No womb.

Five Macmillan nurses.

Three therapists.
One clinical psychologist.
17 appointments to discuss my mental health.

Three prescriptions I take daily.

Six panic attacks in the last three days.
Nine unrelated episodes of tears.

One in 36 women in the UK.
Over 26 cases every day.
3% of all cancers in the UK.
The fourth most common cancer in women.

90% chance of surviving the cancer for over 5 years.

All the Women I Can Still Be

I wrote a few weeks ago about my struggles with finding my identity again, feeling like myself and existing as a woman following. Tomorrow is International Women’s Day, and I spent the weekend trying to work out where I fit in. What came out is a list of everything I am, would want to be, may be, could one day be.

A friend.

A daughter.

A fighter.

A knitter.

A writer.

A career woman.

A patient.

A partner.

A winner.

A loser.

A manager.

A baker.

A business woman.

A bridesmaid.

A mother.

An advisor.

A reader.

An author.

A crafter.

A protester.

A supporter.

A defender.

A cousin.

A younger sister.

An older sister.

A rock to lean on.

A drama queen.

A hustler.

A traveller.

A dreamer.

A cancer survivor.

A gossip.

A listener.

A boss.

An artist.

A girlfriend.

A wife.

A seamstress.

A feminist.

An ally.

A leader.

An activist.

A lover.

A protector.

A flatmate.

A nightmare.

A dream.

A mess.

A blogger.

A champion.

A girl.

A lady.

A cat-lady.

A risk taker.

A fixer.

A teacher.

A carer.

A student.

A translator.

A decent cook.

A music lover.

A theatre geek.

A niece.

A grand-daughter.

A mother.

A creator.

A queen.

An entertainer.

An advocate.

A performer.

That is my list. It may evolve, it may grow, it may be missing a few items, and that is the strength of it.

World Cancer Day

Today was World Cancer Day. A day to celebrate those who won, remember those we lost, support those who are still fighting and give hope to those who will fight in the future. A day to raise awareness and stop being afraid.

It was a long day. I woke up in pain from the physical repercussions of my low oestrogen levels. I had my first counselling session. I cried hot, burning tears. I had flash-back. I said words I had never said out loud. I took another step towards recovery.

On this day, we all have a part to play. Whether it is taking care of your own body, paying attention to the signs, raising awareness, remembering a friend, making a donation towards cancer research, saying a kind word to a loved one fighting cancer, driving someone to an appointment or listening to someone’s story – it all matters.

And on this day, I am grateful to everyone who has been part of my cancer journey, however big or small your contribution was. Thank you. It all matters.

One Year On: We Are in the Clear

If I had any energy left after my one-year follow-up appointment this afternoon, I would probably blow up some balloons and put them up in my flat.

It was hard. My eyes are raw from crying. I used about two boxes of tissues – one in the waiting room and one in the exam room.

I cried in front of the receptionist. I cried in front of the nurse who checked my height and weight. I cried in front of the doctor, and I cried in front of the cancer nurse specialist.

Follow-up appointments are rough. You can go about your life for months, but you know that everything could change in a matter of seconds, in that same room where you first got the news. The. Exact. Same. Room.

I had a new doctor again, who asked me plenty of questions about how I was diagnosed, how it came to be, what tests were done, how thick the lining of my uterus had been on the MRI scan (I have no idea). As I was battling my way through my tears, she told me it was ok to cry. It was ok to be overwhelmed, to be traumatised. She told me that I had gone through a lot for someone so young – terribly young, and she could say that because we were exactly the same age.

I do not know why that comment struck me as odd. Why of all the things she said, that is the one that stayed with me.

But it is all said and done now. A quick exam, a lot of background info, a chat about any symptoms I could have had, an inventory of the medication I am on, and I have been declared cancer-free, until my next appointment in four months.

I will have more to say in the coming days. About how they told me if things remained the same, I would be discharged after one more year, instead of four. About how my dedicated nurse was self-isolating so I was not able to speak to her, but arranged a phone catch-up in a couple of weeks to discuss my ongoing mental health problems.

For now though, I will crawl under the covers, put a good audiobook on and try and get some much needed rest. I may order a celebratory takeaway later, making up for the fact I have had maybe 4 meals in the last 6 days. I will make myself a hot chocolate and put the Christmas lights on.

In the wise words of Adore Delano – Party.

Hospital Appointments and Fearing the Unknown

I had another flashback last night. I was splashing water onto my face before bed, reviewing the pros and cons of reading the next chapter of Barack Obama’s A Promised Land to fall asleep versus listening to the audiobook – an internal debate I have had every night for the last two weeks. I closed my eyes, and when the water hit my face, I was back at the hospital, after my diagnosis, thinking cold water could help me make it feel real, hoping it would drown my tears.

There had been no warning signs, no triggers that I could have identified and nipped in the bud. I opened my eyes and gripped the sides of the sink, trying to regulate my breathing. You are ok. You are at home, this is just another evening, this is your night-time routine.

There had been no warning signs, but I am fairly sure it is related to the fact that, at the moment, hospital appointments are the only thing on my mind. I am terrified of them, I think about what could happen at my appointment next week about six times an hour. It is no wonder my brain finds random associations with everyday activities, like splashing water onto my face. Trauma is no fun.

I have been thinking about the ‘why’ of it a lot. Why am I obsessing over the simple idea of an appointment? Why can I not sleep, eat or have fun for days and weeks before each one is supposed to take place?

It is simple. I have no idea what is going to happen, and so I cannot project myself in the future. I cannot make plans for after the appointment, I cannot anticipate how I will react, what I will do.

Oh, I know what the appointment is going to entail this time. I had a similar one just three months ago. A chat with the doctor, a physical check-up, a catch-up with the nurse.

I also know that the risk of them finding something wrong is low. I know that I probably would have had symptoms if something was not quite right. I also know that the risk of recurrence is low.

The issue is that throughout my diagnosis and treatment, more than half the appointments did not have the outcome that I had expected.

There was the appointment where they broke the news to me, where I was woefully unprepared.

There was the surgery that did not happen.

There was my appointment at a menopause clinic in early January, where, because the operation had been delayed and the final staging had not happened, they were not able to provide me with a plan for hormone replacement therapy. I took a 4-hour round trip to Oxford on public transport, just two weeks after the surgery, barely standing and walking, only to be told I would need to come back at the next available appointment, two months later.

And there was the final staging appointment. The one where, on 13th January 2020, I was asked to come to Oxford again to discuss the results of the operation, and talk about further treatment. My friend had come with me and, because we had arrived a whole 30 minutes early, she went to get a coffee whilst I checked in. Less than two minutes later, I was called in by the surgeon.

I did not know what to do. I told him that my friend had just gone to get a coffee, should we wait for her? He said he thought I would be fine on my own, which I took as a good sign.

I knew that appointment could go one of two ways. Either they would confirm the original stage and grade of the cancer (which had provisionally been declared Stage 1A, Grade 2), or would tell me that they had actually found more, or different cancer cells on the tissues removed during the surgery.

I had prepared myself for both possibilities. I had told myself I was ready either way. And still, the outcome was different than anything I could have expected. I sat down opposite the surgeon, and he quickly went through the surgery, telling me it had been a success. That the cancer was confirmed as Stage IA, Grade 1. I blinked. Excuse me, Grade 1? The surgeon nodded. I interrupted him again. I had been told after the initial biopsy that the cancer would be Grade 2, what did that mean? And he confirmed that the grade had been lowered as the immense majority of cells appeared to be Grade 1 after examination of the tissues removed during surgery.

I was floored. It was excellent news. It would mean I would not need any further treatment. I would be able to have HRT. As the surgeon said, removal of my ovaries had only been indicated as they believed at the time that the cancer was Grade 2. The surgery had been more extensive than would have been strictly necessary.

It was good news, but it was once again hugely unexpected news. I had not imagined that lowering the grade of the cancer would even be an option. How was I supposed to react? I had trained my brain to deal with all the potential outcomes, but not this one. It just solidified the idea, in my already traumatised mind, that anything can happen at one of those appointments. Good news, bad news, anything at all.

The unknown is terrifying. You spend so much time preparing for any eventuality, only to end up being taken aback by something you could not have expected.

For my last check-up in August, I had taken time off work in the week leading to the appointment. I went on a very short solo holiday, coming back the night before the appointment. This ensured that I would be busy, doing things I enjoyed and keeping myself distracted up until the day of the dreaded appointment. It worked – kind of. I only had two panic attacks on the day – one in my bathroom as I was getting ready, and one at the hospital, where I completely broke down in front of the young doctor who was checking up on me (keeping my fingers crossed it will be a different one this time – I think I terrified the poor man).

This time, I will be taking a different approach, working right up until the morning of the appointment. Will that help keep my mind busy up until the last minute? Will I be too distracted? I can only try, and find something that works for me. After all, even if all goes well, there are still four more years of regular check-ups to come.

So that is what terrifies me. My brain works overtime at the moment, trying to imagine dozens of different scenarios and doing its best to anticipate what could happen. There are honestly not enough hours in the day to compute all the possible outcomes and imagine how I might react, preparing my feelings, my reactions, what I will tell people. All the while knowing that no matter how many different potential outcomes, there might be ones I have not thought about. Ones that I will not be ready to face.

Bring on Wednesday.

If I Be Weak

This is how the chorus of one of my favourite songs goes: ‘If you be weak / Then I’ll be strong / When the night is long’. Later on comes the counterpart: ‘If I be weak / Won’t you be strong / When the night is long.’*

I used to listen to that song a lot, back in my late teens and early twenties. I listened to it with the arrogance of youth. I did not understand how someone could be both strong and weak at the same time. In my head, I was and would always strive to be strong, to be the one comforting everyone else. I was able to carry the weight of the world on my shoulders. I liked to pretend that the second chorus, that question about whether someone else would be there if I broke down, did not exist.

I had very old-fashioned ideas about what strength was. For me, strength had always meant not showing vulnerability, being reliable, being able to prove myself, rising to the challenges thrown my way without ever admitting how much effort it took. I spent years and years trying to prove I could do everything by myself. Being strong meant doing everything, and doing it well. I am highly competitive, and I have always strived to be the best at everything I did – giving up things that I enjoyed but had no natural talent for because I would not ‘win’, be it against myself or someone else.

I have spent the last thirteen months (happy thirteen-month anniversary to me – officially my third-longest relationship ever!) constantly oscillating between wanting to show how strong I am, how I am keeping it all together, and wanting to break down, to admit that I am weak and need other people to help me stand. It is a real balancing act. I want people to see me as someone strong, secure, reliable. But I also want them to see the cracks and acknowledge they exist, even if it makes them uncomfortable.

Some people acknowledge this weakness. It is the only thing they see. I had that revelation just a couple of weeks ago, when I received a letter from the GP advising me to call and schedule an appointment to receive the flu vaccine. I had received another one a couple of weeks earlier and ignored it – not on purpose. I simply forgot about it, because of how ludicrous it felt. After all, I am 28. I have never struggled with the flu – I get it every couple of years, spend a couple of days in bed with a fever, and have aches and a bad cough for a week. And that is it. Why would I need to have the flu vaccine? Surely other, weaker people could benefit from it more.

And then it hit me. Doctors see me as a person who is at higher risk. In their eyes, I am one of those weaker individuals. I need to be protected, to avoid adding to the numbers of hospitalisations over the winter months. I am not a normal 28-year-old anymore. I am different than I was eighteen months ago, when I was a healthy individual, for all intents and purposes. (Well, it is either that or the NHS spent so much money on getting me cured of cancer, they would be pretty pissed off if I then died of the flu) And so I booked an appointment at the GP, and I finally got my flu shot. My arm has only just stopped hurting. 

But that is just one point of view, the one of health professionals who know one aspect of my life only: the one where my body has let me down. Not everyone sees things that way.

The thing that makes me the most uncomfortable is hearing people tell me how strong I am. Of course, it is a perfectly standard, commonplace thing to say to people who have had cancer. If you have ever said it to me, please do not feel bad, do not feel like you did something wrong. I have said it to many people in similar situations. I will probably say it to others in the future. But it makes me cringe every time, and I want to be open about it.

Hearing that feels both like a compliment and a slap in the face, a duality which is exacerbated by the fact that I am responsible for people thinking of me that way. After all, I am the one trying to project that image, and still I am the one cringing when people recognise it, I am the one feeling sick, like I have been telling a lie that people believe. To quote a phrase that I have been using in every blog post so far – it makes no sense. I am happy to hear that people feel that way, see me that way. It makes me proud, it makes me feel like I am not as much of a failure as I feel most days. But it also hurts, because it feels as if they do not see how much I am struggling. They are ignoring my pain, ignoring the fact I was not cured with a simple snip of the scalpel, that it does much deeper than that. It feels like they will not allow me to be weak, they will not allow me to tell them I am not coping. Instead, I feel like I need to keep pretending, again and again. Keeping up appearances, forever.

But it is ok to be weak. It is normal. It does not mean I cannot be relied upon.

I remember when I first told my team at work. There were tears, there were words of support. But over the next days and weeks, I realised they had started avoiding telling me about their problems. They wanted to spare me. They wanted me to focus on my own issues, they felt like their work wobbles, their doubts, their personal troubles were somehow less relevant now. But it was not the case. I still want to be able to help and support everyone. My team need me. My family need me. My little brother needs my shoulder to cry on, he needs my enthusiasm, my support, my help to prop him up during a difficult time in his own life. It is a struggle, because I only have so much energy and emotional capacity, but I like it. I like knowing I will be there when they need me. ‘If you be weak, then I’ll be strong / When the night is long’

It is very contradictory. I do not want people to treat me differently because of cancer, but I also do. When I let people in, when I tell them about the last year, it is not because I somehow want them to feel bad for me. I do not want, I do not need their pity. What I need is for them to understand that, despite everything I show the world, I am also weak, and I need them to be strong for me. I need shoulders to cry on too. I need support. I need to be allowed to be weak. I need to know I can let go, and that things will not fall apart when I do. I am a broken vase that has been hastily put back together. I am vulnerable, but I still hold my shape. I need you to be there, super glue in hand, for the next time a crack opens up, and water starts pouring out. ‘If I be weak / Won’t you be strong / When the night is long’

*Armistice by Patrick Wolf. A masterpiece that has been playing on repeat on my phone and in my head since 2011.

One Step Forward, Two Steps Back

Getting better. That has basically been my only goal since I first received my diagnosis last year. Everything else, life, friends, relationships, work, the future, it all took a step back, to allow me to focus on this one thing. Getting better is the aim, after all.

I always pictured my experience as a hurdle that I would need to pass. After that, life would start again, it would go on, I would be on a clear path to getting better and back to normal.

But as time goes by, and I start having first-year anniversaries of all the significant milestones of my diagnosis and treatment, I realise that getting better is not a straight line. It is full of curves, of hills that I thought I could not reach until I conquered them, of slopes that are too steep, too fast for me to go down safely. It is not an easy path.

There have been milestones throughout the year. So many moment where I thought ‘I have done this, now I will be fine’, only to reach a new low after a few weeks.

There was the operation, on 19th December. The day they told me the cancer was confirmed as Grade 1, Stage 1a, and no further treatment would be needed, on 13th January. The day I was prescribed hormone replacement therapy, on 26th February. The day I received a letter telling me there was no sign of a genetic mutation, sometime in late spring. The day after my first in-person follow-up, on 28th August. On those days, I felt relieved. I reached a new high each time. I felt like nothing could touch me. Depending on the appointments, I had been reassured that I was doing ok physically, or at least that things would start looking up.

But because there are highs, there are lows too. And every time I feel great, I know now that it is not going to last. That no matter what I do, there will be a point where I feel anxious, where I feel low, where I feel down again.

It can be overwhelming, this feeling that whatever you do, there is no progress. I am stalling. I am wary of even thinking things are fine, because I know there will come a time, pretty soon, where I will struggle again. I am afraid of getting my hopes up, because I fall harder every time.

I am at that point again, two months after my latest check-up, and a month before the next one, where I start panicking again at the thought that something might be physically wrong with me. That the cancer is back. I have nightmares about it. I wake up thinking about it. I go about my day, and I think about it every minute. I try to go to sleep, telling myself that I am another day closer to receiving bad news again. It is completely irrational. I know the chances of it happening are very low, but I cannot control it. I have tried CBT, I still try and undo this negative thinking pattern, but it all-consuming.

I feel anxious, and I feel low. Because so much of my energy is focused on this, I feel tired all the time. I feel unmotivated. I do not have the energy to do anything. I try reading a book, and I have to give up after two pages, my brain will not let me focus on it. I will watch a film and switch after ten minutes.

I feel all the emotions, all at the same time. I feel sad. I am downhearted. I feel angry. I am frustrated. I cry. I am mad, and I slam on my keyboard. I swear at myself, I swear at clients, I swear at my friends – but only in my head, and in my flat.

What I thought helped does not anymore. I thought that yoga helped me relax, and now I just cry at the idea of lying down on my mat. I thought medication was working, but I feel worse than I did weeks ago. I started doing crafts again and thought I had found my focus again, but I have to force myself to pick up my knitting needles at the moment. I thought that writing had really helped, that it had allowed me to put words on my feelings, that I was seeing the light again, only to realise that I have taken a huge step backwards, and I am now back where I was six weeks ago.

It is disheartening. I keep feeling like things are looking up, only to be disappointed again. Disappointed in myself, both for letting myself feel like this and having had the hope to think that maybe, it would not be the case this time.

It is a pattern I will have to get used to. Triggers that I will need to identify, and can prevent before I fall into a downward spiral again. What started it this time? I cannot pinpoint a single factor. There are a multitude of reasons, some more personal than others. Cancer anxiety. Family issues. Politics. Workload. Lockdown. Worry about not being able to finally go home at Christmas, and see the family and friends I have not seen for over a year. Watching my friends achieving things, reaching their goals, whilst I am still here, stuck in my post-cancer rut, unable to move on.

Thirty days until my next appointment. I know that if everything goes well, a new high point awaits me on the other side. And it is higher, better, deeper each time. I will feel happy again. I will feel like I am back to normal again. But if you are looking for me in the meantime, I will be hiding under a blanket with a Christmas-scented candle burning next to me.

From Diagnosis to Surgery – Part 2

After the surgery was cancelled, I probably hit one of the lowest points of my life. I was completely spent, both physically due to the lack of sleep, and emotionally due to… Everything.

I had marked the day in my diary. I had really focussed all my energy on holding up until the third of December, on pushing all my feelings aside, on staying strong. And when that day turned out to be just another day of limbo, another day where I still had cancer, I crumbled.

The day after the cancelled surgery, my father left. He was concerned, but I kept reassuring him that I was going to be fine. What I really wanted was to be alone, to lie in bed in the dark and wallow. I had never been one for wallowing – I am usually restless, and the thought of doing nothing gives me anxiety. But for the first time of my life, I wanted to do nothing, think about nothing and just let the hours and days pass.

I had to call work, explain what had happened. I actually cannot remember how I did it. Maybe I emailed my manager, maybe I phoned her – I have absolutely no recollection of that. All I remember is her telling me not to come into work that week, but to stay home and take care of myself.

I did not, not at first. About an hour after my dad left, my phone rang. One of the doctors on my team, the one who had been with the surgeon the day before, was calling to ask me how I was doing, and to confirm the date when the surgery would finally happen. I apologised for breaking into tears and falling apart the day before, I apologised on behalf of my father for him having lost his cool, she apologised on behalf of the hospital for not having been able to perform the surgery I was so looking forward to.

She reassured me that nothing would change in the two and a bit weeks until the new surgery day. The cancer would not grow, it would not spread, the prognosis would not suddenly worsen. I felt like I could breathe a little bit better. But then she stopped, and told me that unfortunately, I would have to have another MRI.

They cannot, or will not, operate on a patient without an MRI dated less than six weeks. Mine expired two days after the date of the original surgery. Delaying it by two weeks meant I would have to take another one. Just that thought made me lose it again altogether. I was in tears on the phone, I could not wait to hang up and slip under my blanket again. She told me I would receive a letter informing me of the appointment for the scan, and that she would see me a couple of weeks later.

Despite her reassurance that everything would be fine, that it was unlikely that the cancer had spread further, I was terrified again. In my head, there was still a chance the new MRI would show some significant change. A part of me understood that it was a just formality, that it was something they had to do to comply with their stringent processes, not because they were particularly worried. But another part of me was convinced that if they needed a more recent scan in order to carry out the surgery, it meant that there was a possibility that things had changed. And knowing my luck, the odds would be that it had gone against everyone’s expectations, yet again.

I spent the rest of the week at home, watching TV shows and doing the Christmas crafts I had planned for my recovery. On the Friday and Saturday, I went to the gym a total of five times. I had had a sudden regain of energy, and I could not sit still. And then, it was time to go back to work for the last ten days of the year.

It felt wrong to be back at work, but it felt good to be able to focus on something. I fielded questions about why I had been away the week before, and why I was back when I had told everyone I would be away for the rest of the year. My mind was half there, half on the surgery – the one that was cancelled and the one that was still to come.

The MRI was scheduled for that week. The friend who had been coming to most of my appointments drove me there again – another nice little trip to Oxford. This time, it took three members of staff and 30 minutes to locate a vein and place a cannula into my arm to inject the muscle relaxant and contrasting agent needed for the scan. It took so long that when I emerged from the prep room, my friend thought we were done with the MRI and got up. But no, they were simply taking me from one end of the ward to the other to carry out the actual scan.

No music this time – different hospital, different processes. I had earplugs. I closed my eyes, and in I went. Each cycle of the machine to take a scan seemed to last longer than the last. I felt nauseous, I had trouble breathing but they kept telling me to try and stay still, to breathe as calmly as possible so as not to blur the images. Finally, someone came into the room to let me know I was done. I turned around and sat up, putting my feet on the floor. I felt faint as soon as I started standing up, and had to sit back down. They tell you that you should not drive for an hour after being injected with muscle relaxant. I do not know if that was linked, but it took me over five minutes to be able to get up and walk back into the waiting room.

The next two weeks went by very slowly, and extremely fast as well. Work was busy. I managed to attend the Christmas party for our whole company, which is usually a huge bash that I barely remember the next day. This time, I was not drinking, but it went by in a flash. I was the sober friend dancing the night away.

At the weekend, I met up with a group of friends and went to the Oxford Christmas market. It felt almost incongruous to be in Oxford for something that was not cancer-related. It was all I could think about. There, in the midst of my friends who were chatting about their Christmas plans and theirs wishes for the New Year, I felt out of place. I felt so detached from everything that was happening around me. It felt like I was watching the world go past, do its own thing, and I was just there, witnessing it all without taking part. I did not know what my Christmas would be like, nor did I know what I could expect for the months and years to come.

My mum had made plans to come and stay with me for that second surgery. She would then stay all the way through Christmas, when my brothers would join us for a few days, before they all left on Boxing Day. Then, a couple of my uni friends would come and stay until New Year’s Day. It felt good to have plans, to have a schedule to look forward to once the operation was over. I had no idea how I would feel, whether I would be able to walk, but I knew I would have people with me.

The day before the surgery, I was off work again. I met my mum in London – she was coming by public transport, and I did not want to let her loose on the tube – who knows what could have happened. We had lunch in London, and then took the train back to mine. I laughed at how she struggled to walk up the hill from the train station to my place. For over a year, she had made fun of me for being overdramatic about living at the top of a steep hill. Well, that served you right, mum.

I had been told to be at the hospital at 7am, as soon as it opened. I was first on the list for that day, so there would be no delays. We took a taxi to Oxford, I was watching the sun rise outside the windows. We arrived early (very out of character for me), and walked into the hospital. This time, I knew the shortest way to get to the surgery ward. I knew which turns to take, which papers to present to the nurse behind the desk. Christmas decorations were up, and the bell stuck to the front of the desk kept falling to the floor. I picked it up a couple of times whilst we waited.

I was called in for them to check a few details – I confirmed I had not eaten since the previous night, and all I had had for breakfast was a glass of water. They put hospital bracelets on my wrists – the same ones I had had two weeks previously, and which I had torn away from my arms on the way home. They told me the surgery would probably start around 10-10.30, after the surgeon had visited the wards. I spoke with the anaesthetist again – a different one to the one I had seen before. I had to take a pregnancy test – the last one of my life. It felt ridiculous but also so meaningful.

I went back to the waiting room, prepared to wait for a long time. But they called me back in almost immediately, to meet the team that would handle the surgery. This felt like the moment of truth. We were in the exact same room where they had cancelled the surgery before. But this time, it was different. The doctors were not the same. This time, it was the right one. I signed consent forms, I confirmed I understood everything and I was ready for it. And then, they asked me to change into a hospital gown, put on my dressing gown and slippers. I left my suitcase with them and a nurse gave me a bag in which we would put the belongings I still had with me. And then she told me to go back to the waiting room whilst they prepared everything.

I went back and sat down next to my mum. We chatted for a while. It was nowhere near 10am, so I assumed we still had still some time left. But after a few minutes, a nurse came in and asked me to follow her. I turned to my my mum, I did not quite know what to say. The nurse must have understood, because she said ‘Oh, is that your mum? Come on, give her a hug!’.

I am not a hugger. I cannot remember ever hugging my parents – I am sure I must have done but not in the last fifteen years, at least. I hesitated, but then said ‘Oh, we’re not really like that.’ I keep thinking about that moment. My mum probably would have liked a hug, but she did not say it. So I nodded, and probably said something meaningless.

I followed the nurse through the door. I could see someone rolling my suitcase to the lockers where it would stay until I woke up, and I realised at that point that my phone was still in the pocked of my dressing gown. I ran to give it to them – I guess I needed to do one last silly thing before the surgery.

I remember walking down a long corridor, past a number of closed and open doors. They had told me it would be cold but I think the adrenaline running through my veins made it impossible for me to feel it. We arrived into the room where they would put me under. It was not what I expected. There was a hospital bed for me to lie on. Lots of medical equipment. A second nurse, and the anaesthetist.

My memories there are quite vague. They needed to put a cannula in my arm, for administering medications and fluids. I remember telling them about my fine veins, and them saying they would put it in the back of my hand anyway so it did not matter. I remember thinking how odd it was, to have something stuck in my hand like that. Over ten months later, I still have the scar on my hand. It is a tiny, round scar. No-one else can see it, but as I sit writing this, I stare at it. It is the first scar I got as a result of my cancer.

I have no idea how they administered the anaesthetic. They tell you that your brain stores traumatic events away, that you have a selective memory for these moments you could have done without. This is where my pre-surgery memories end.