Day 1- Chemotherapy

It’s all still hazy. I was wheeled into the ward by my sister and friend. The NCCC isn’t as bad as I thought it would be. No depressed looking faces, no ugly clinic walls, no bland tiles and tiny windows. It magnificent really. People moving up and down with a slight smile, I sense a tiny gratitude for life in the hospital. The doctors and nurses are nice and helpful, so are the families there supporting their loved ones.

Ward 34 was way better than I thought or could dream. I’m wheeled into the TCT (Teenage Cancer Trust) day room. The bright coats of paint on the wall (purple and lime green), two flat screen tv’s, a mini kitchenette, a coffee machine, games, magazines and comfy sofa. It wasn’t what I expected to be honest. I’m lost in thought and wonder. Perhaps chemotherapy won’t be as bad as I have heard. Perhaps it will be mild and I won’t even notice any changes.

Three doctors walk in at the same time, it feels like some sort of ambush. They ask me different questions, they want to know about my lifestyle choices and tell me what to expect. Have you done drugs? How much do you drink? What was your diet like? They say my oncologist will be with me shortly. I’m given a package and 3 tubes, I have to take swabs to check for infection. I am taken to a private room with a strange looking seat, surrounded by drawers of needles, swabs, wipes, and all other medical kit. Blood is taken from me with difficulty and a cannula is inserted into my left arm. I chose to have a cannula instead of a central line and PICC line for my chemotherapy because I was scared of having a long term line put in. I completely regret this decision.

I am returning to the day room now, feeling exhausted and I stop. The world suddenly pauses and I become deaf. No thoughts, no words. I’m sat steering at the future. He was a young guy, probably the same age as myself. He looked so tired and frail. He was obviously bald. I saw in him a vision of myself. I smile at him and he returns a soft smile has he heads back to his room. I return to the day room in silence. I find my sister and friend sat with a social worker from CLIC Sargent. She smiles and introduces herself. She mentions a few things but I cannot seem to respond. This angers my sister. She mentions my course at university and I realise I had not informed them of absence. She mentions my student visa and wants to know when it will expire. She asks if I could receive treatment at home. I do not respond. My sister and friend do most of the talking. With a soft and kind smile, the social worker says it will be alright and she will return to see me again soon, then she leaves.

My sister is infuriated with me. She is angry with my lack of response to the social workers questions. All I can say is “I don’t care”. She becomes angrier with me. I try to explain what I saw and how I felt. This wasn’t what I wanted, this wasn’t what I planned for. I understand her anger, I’m angry too, I don’t believe this is happening. We are later taken to my room and she stays the night and then the week. I couldn’t bear to tell her how I truly felt. So much guilt, sadness and sorrow. I feel like I am a fraud and I feel like I do not deserve treatment. There are many more suffering and dying from cancer, mine isn’t that bad. I didn’t feel like I deserved to be happy after all I had seen and experienced in the past few weeks. My oncologist says it’s going to be fine. This is a means to cure and says it’s the best cancer to get really. I mean if I had to pick from a list of cancers, he believes this is the best. I later find out that oncologist say this to patients with different cancers in order to calm them and make sure they receive vital treatment.

I feel very overwhelmed. I had a hearing and lung function test. I was told my type of chemotherapy affects hearing and can cause scarring of the lungs (pulmonary fibrosis). I am told I have to avoid sunlight and wear sunscreen if I must be outdoors. I must avoid bumping into things or falling because my skin will become very sensitive. Bumps and bruises are inevitable but I promise to keep them minimal.

I have an IV of fluids first to protect my liver, kidneys and bladder. Then it begins. We arrived at past 11 but it’s beginning to hit me now. I don’t like how I’m feeling. It stings and I feel dizzy. I always get a weird smell and taste in my mouth. Yuck!

Home

My return home was a bit surreal, if I must admit. The room I never thought I’d see again was still there. Everything as I’d left it, apart from new bedding and hovered floors. It was a struggle to get up the stairs but I managed it, even if it took me 5 to 10 minutes. How had life seem so unchanged, especially now, after all that’s happened. Life in the hospital was so different and life at home was different, I had changed and I began to feel uncomfortable in my own home. My sister stayed in the room next to mine. Jo slept in my room. I sat in bed most of the time, sleeping and waking. I was advised not to lift anything, not even a kettle (it didn’t take me long to break that rule).

I had been assigned a district nurse to care for my wound. They had taken away the stapled tracks on my belly, all that was left was an ridge where my skin had been pulled together and stitched. It didn’t take long for holes to form and for infection to occur. I struggled and was taken to Durham Hospital and was prescribed co-amoxiclav. I got home and took the medication as was prescribed, after a few hours I felt a strange tightness in my chest. I believed at the time it was due to my nerves after being told I had cancer. After all, what else could keep me on edge apart from being told I had cancer and I was to be going to a ward full of patients battling cancer.

I was already having issues with my district nurse, she didn’t seem happy with the idea that my wounds needed changing daily even after it had been recommended by the surgeon and protocol. At night I started finding it hard to breathe, scaring my friends and sister. They rang 999 and an ambulance was sent, this occurred twice and they would discover my oxygen levels were low. I was sent back home even when I mentioned how tight my chest felt whenever I took co-amoxiclav. I had a scan scheduled at Metaphysics within the hospital, can’t remember what they were looking for.

My home life had changed, I didn’t cook or clean, all I needed to do was wash myself and dress. I slept most times not only because I was exhausted easily but I was also bored from lack of independence. I cannot deny my appreciation for my friends and sister for their support and assistance during my trying period but I somewhat missed the old me. I used to be able to plan 1, 3, 5 and even 10 years ahead but now I’m not too sure. In a few days I will be off to the NCCC at the Freeman Hospital in Newcastle, I still cannot believe what is going on with me.

Silence! Silence

It’s all been going well. The pain is still a burden and I still need help in the shower. All dignity I have is lost to be honest. Nurses take turns washing me, dressing me and medicating me. I have nothing to complain about to be honest, I’m here, I’m alive and I can move my arms and feet.

I’m capable of eating full meals again but I now have trapped wind and my insides haven’t really settled post surgery so I haven’t farted or going to the toilet in a while. It felt weird to be honest. I was also attached to a urinal catheter, it felt weird sitting and chatting to friends whilst my pee was being collected in a bag below. Strange how nobody mentioned how awkward it was. Starting to laugh a lot more now, it just might be the fact that I’m still on medication.

I spoke to my mother and she said a little prayer. She says she’s doing alright and still seems to worry about my health. We laugh at how wonderful life has been and how fortunate I am to be in my current position. Honestly speaking if I was in Nigeria when this happened I would not have made it. I know a lot can be said about cancer in Africa but I can honestly say the actual number of people who die of cancer related illnesses is more than is that which is on record.

My favorite doctor walks in, but she seems to be in a less happy mood. She sit on the side of the bed and sighs. She tells me my tests came back and I had cancer. Cancer! Wait! Cancer! Wait! Wait! Wait! Cancer! I’m silent. I knew it was bad but not this bad. Not so bad that I was fighting with this thing I could not see and could not touch with my hands. She asks if I wish to be left alone and I nod. She leaves.

I’m alone now, truly alone. I was told alone. I sigh and let out a little cry. I felt cold, unfeeling. I rang my friend Jo, I told her what was said. We cry together on the phone. I need to cry with someone. The world had gone blank for a few hours as I let others know. I was numb and all was silent.

I would be meeting a new doctor, my oncologist. Dr Dark. I pictured him in my mind as a mysterious super hero who wielded the cure for cancer. With a needle in one hand and chart in the other, he would kills this villain and I’d be back to myself in no time. My initial appointment with him went a little different than my morphine hazed head had pictured. I was still struggling to walk and was wheeled to his office by my sister. I didn’t want to be there so early, I was exhausted and wanted to just rest in bed. I cannot remember much of what was said but I remember him looking straight at me saying his intentions were “TO CURE”.

I would be going to the Freeman Hospital and a few days. He said I had to start chemotherapy as soon as was possible. It had to be done. It was a quick growing type. It was a yolk sac tumor, it was a germ cell tumor, it was ovarian cancer. We had to get it before it came back to get me. It had ruptured before surgery and there was gunk everywhere. Egg baby as ironically named by my friend during the early days of discovery at Durham hospital was truly an egg baby and it was trying to kill me.

 

 

My laparotomy

The days went by without much improvement. I wasn’t eating and my oxygen levels were low. I faded in and out of consciousness and really didn’t believe I would get better. My mornings were spent in bed and my nights were feverish. The doctor still believed I was fighting an infection and nothing more. To be fair to him, no one desires to diagnose a patient with cancer.

I had become disillusioned and a little bit paranoid. Perhaps it was the fever but I believed that some of the night nurses had it in for me and wanted me dead. My friends didn’t seem to impressed either. I would sometimes lay there, screaming in agony for hours without thought of relief. I was aware I had to wait sometimes for painkillers but waiting more than 4 hours was just torture for me.

My final day at Durham hospital was an emotional one. I cried as my bed was being wheeled out of the ward, through the hospital hall, and into an ambulance. Saying my final goodbyes to the ward nurses and the other patients who had suffered sleepless nights from my constant screams of pain. The relief I fell within was tremendous. Perhaps the move to another hospital would save my life. IT DID.

I arrived at the Queen Elizabeth hospital in Gateshead and was moved to the gynecology ward. I was told I was to have emergency surgery that night but I was yet to inform my family. The doctor agreed to moving the surgery to the following morning. I was placed on nil by mouth (no food or drink), till after the surgery. To be honest I wasn’t really hungry and really couldn’t be bothered to think of drinking anything. All I wanted was to have my family with me before I went in for surgery.

On my way into surgery I said a little prayer and asked for an extra blanket to keep me warm. I was moved into the theater with a smile on my face. I really didn’t care about what would follow. I just wanted to be at peace and I was. I said hello to everyone in the room and  was put to sleep by the anesthetist.

The rest was really up to the surgeon to be honest.

What’s happened to my legs?

What’s happening to my legs? Within a week I had lost the ability to walk, moving caused so much pain. I remember going on my short walks round the hospital to cure my ongoing boredom, but now I needed a wheelchair. I would be pushed out of the ward just to see what the outside world was like. How active the other patients were, especially with their families. I must admit I was becoming jealous of them. I wanted to be able to move around without support. I wanted my independence back, I needed it back.

I had stopped eating. I literally couldn’t stomach it. Whatever I ate just came back up, not even if it had chili in it ( I have an undying love for chilies, I would admit to being a chili addict). I became weaker, lost weight, lost muscle and started to fade in and out of reality.

I cannot remember much of the day, but night time was always horrible. I was always in excruciating pain and it took ages to receive the medication and painkillers I needed. During the day I had friends and acquaintances come see me, so I was always my very best. I pretended as though there was nothing to worry about and most times tried to disguise the pain. Some friends came once never to be seen from again and others were there through to end. You begin to understand who is really there for you in these sort of situations.

My specially assigned doctor told me not to worry, he claimed my tumor markers were extremely high but he believed I had some kind of flu or infection. He said I was too young to have what he suspected and that it was rare anyway. He late said he thought I had Dysgerminoma. Dysgerminoma is a type of germ cell  tumor which can be benign or malignant. Germ cell cancers are classed as rare but Dysgerminoma is said to be the most common type, it usually occurs in young adults. He was right about it not being Dysgerminoma though.

I thought about how short my life was and how I’d lived it. At this time I’d let my mother know what was happening. She too was ill and in hospital. She had been diagnosed with Pulmonary Fibrosis a couple years ago. I didn’t know how bad it was because I hadn’t seen my mother in a year. Pulmonary Fibrosis (scarring of the lungs) is a respiratory disease where scar tissue is formed on the lungs, which cause serious breathing problems which are fatal. It has no cure as of now and I pray there is a cure found soon for the many others who have to battle this evil disease. She never once mentioned how bad her health had gotten, only worrying about me. I sent her photos of myself, trying to reassure her that I was well, knowing it was far from the truth.

At this point my oxygen levels were low and I was breathing through oxygen tubes, puking up green stuff, body temperature going of this scale and I think I had started hallucinating. A large tube had been attached to my swollen belly to drain the fluid from within. Getting that tube into my abdomen was one of the worst things I’ve ever had to go through. I kept screaming as they forced a large needle into my belly and missed the spot the needed to drain so the doctor had to do it again. I now know what it feels like to be stabbed and it doesn’t feel good at all (try not to get stabbed ever). The fluid in my belly was a weird shade of orange which latter turned red, when there was enough in the collection bag. This bag went everywhere with me, even for scans, showers, and wheelchair trips.

I had so many different doctors come through to see and speak to me whilst I was still at Durham hospital. Only one doctor really told me information I needed. “It’s 18cm in length“. My life had become a blur to me and all I felt was the pain within.

Hello, I am Tumor not Cyst.

Being moved to the assessment ward made me realise this wasn’t something a simple pill would solve. I actually believed it was my pancreas or spleen, it just had to be one of the two. I told everyone I wouldn’t be there long and would be home within 2 days at most. I’d been there for quite a while so I  rang my friend to come up and keep me company.

Doctor 1 enters, he says we think we found something on your left side. It might be a cyst of some kind. It’s not much to worry about. We’re  stilling running some tests and we’ll let you know what’s happening after. He leaves me with questions unanswered. I’m sat there without a clue.

Hours pass by, my friend is now here so we just rant on like a bunch of wild lunatics. Doctor 2 (dressed in surgical scrubs), says we believe it’s a mass on your right side, he says. We’re still not sure but we will have to send you of for a CT scan soon.

I’m totally at a loss for words at this point. Is it on my right or left side? I know the pain is on my right. Why was he in surgical scrubs? Am I having surgery tonight? What the hell is actually going on here?

It’s now late and I’m being moved to the gynecology ward. I say goodbye to my short lived ward friends. I’m still being hopeful, believing this could not be what I think. It definitely can’t be. I’m just 22 and if it was a tumor, it is more likely to be benign right? 

Well it turns out it was a tumor. Meet Endodermal Sinus Tumor aka the Yolk sac tumor (my friend named it fish baby). This tumor didn’t take long to grow. Only a few months to be precise. It was so big it was crushing my organs and had moved them to the left side of my body. I wasn’t told what tumor it was until after surgery of course.

X-ray then Ultrasound.

I remember it like it was yesterday my argument with my GP. Monday 9th February 2015, I walked into the clinic without an appointment begging the receptionist to see the doctor. She stubbornly agreed to me meeting the GP during the afternoon drop in.

I finally got to see the doctor but after examination, she said it was trapped wind. I disagreed explaining how long this had been going on. She prescribed some medication to relieve my supposed wind. She also reluctantly ran a blood and urine test for infection. No pain killers, no advice, no further testing, absolutely nothing.

I went home feeling defeated, took the medication and struggled till the end of the week for my results. I returned to her on Friday of the same week. She said the test came out fine and she definitely believed it was trapped wind. I remember her swerving from left to right in her chair, looking at me with such irritation because I would not leave her office without further testing.

She finally succumbed to my will and sent me of to the hospital for an X-ray. This was sometime in the morning (around 10am). I meant a lovely nurse (to this day I can’t remember her name), who felt an X-ray wouldn’t serve its purpose and signed me up for an ultrasound as well (pays to be nice to people, no matter who they are). I had my x-ray and that came out fine.

I was starting to believe I was at fault and had become irrational. I thought perhaps the doctor was right and I was just drawing things out in my mind. My ultrasound was next and boy did it come with impressive news. I lay there with cold, translucent fluid on my engorged belly, whilst having a chat with a friendly guy moving this funny looking joystick on my stomach. It was all small talk but something changed very quickly as he moved the stick to my left side. His facial expression was that of shock and awe. He refused to speak further and sent me back to the waiting room.

I knew something was wrong. 

 

Pre-tumor Phase

2014 was a year of change for me. I had just left my degree in Software engineering at Durham University and signed up for a top-up management degree at Teesside University but would have classes in Newcastle. I wasn’t entirely sure what the year was to bring but I faced it with relish. A new course, a new start, new friends and new experiences in a new year.

I arrived late for my first class, I was still commuting from Durham so I really wasn’t sure how long it would take to get to Newcastle. Within a few weeks, I had already made friends and was thoroughly enjoying my new course. I wished I had changed to management earlier on.

The months and classes went by (enterprise, leadership…..) and it was soon time to focus on preparing for my dissertation. By autumn 2014, I had collected almost enough data and had begun typing my analysis section. I still required more interviews though but then I always think that with most projects.

I can only remember the month of November 2014 being an odd one. I had a finance final to submit and a dissertation due the following year. I remember being in no pain at all. However, I was worried. My monthly visitor (Aunt Flo) had not been seen. I calmed myself down by believing she would return in the New year (she can be quite irregular with some people).

Well December arrived and the cramps began and weren’t much to worry about. A little pain here and there. I had noticed my belly swelling a little towards the end of the month but I thought nothing of it, it was Christmas after all. I wasn’t able to return home for the holidays because I felt I needed to focus on my dissertation. I told my family I’d see them over the summer of 2015 (If only I knew what would happen). I stayed with a friend and his family and had Christmas dinner with another friend.

December 31 was spent watching Robbie Williams 2010 concert video, eating chinese food and drinking wine with my friends mother. We had so much fun over the holidays and felt entering the new year listening to good tunes wasn’t bad. I returned to Durham in January with the goal of submitting at least a draft to be examined by my dissertation supervisor and the plagiarism algorithm on “Turn It In”. The cramps had gotten worse (painfully so).

Waking up half way through the night in pain. Turning into a fetal position to ease the pain. Using heat pads on my back. Not being able to bend over to tie my shoelaces. Being the ever stubborn person I am, I decided I would go to the GP by February, if the cramps hadn’t subsided.

I looked 5-7 months pregnant and was in a lot of pain.

Welcome

It’s about one year now since I was diagnosed with Ovarian Cancer. Cancer is not something to fear but something to fight.

I’ve now decided to share those experiences with the web in order to support someone joining the battle with cancer. It also helps me return to the comfort of using a computer again.

I hope you enjoy reading my blog. Leave comments and share and keep fighting the good fight.

Welcome to my afro cancer diary.