In darkness comes the beauty of a Tulip.

The past few weeks have been very difficult for me and everyone around me. I never wished for this curse to come upon me but it has. I’ve been feeling very down and dark, the joys of life seem to fade as I continue to focus on what will come next. Cycle 3 was about to begin and then a test scan to see if the cancer was gone. What if it hadn’t? Then I have a PT CT done. What if it shows that it’s still there? Well my oncologist says we’ll talk about it when and if it comes to that and try our very best to cross that bridge when it does happen.

I refuse to look out the window for fear that the world could be peering in and see my sickly frame and see who I had become. I missed calls from my mother often, because I was asleep and sometimes too ill to speak and could not bring myself to let her hear me. I keep a happy face on whenever I am visited. I smile through all of the sadness I struggled with and the disappointment the year brought with it.

My hair has fully been uprooted from my scalp and I am now completely bald. I compare myself to the bald egg in the kitchen; we share a striking similarity with one another. The only difference was that there was a nasty feeling brewing in my head from the chemotherapy and what was inside my head wasn’t considered tasty. My memories of the past week are so fuzzy and can only recall a few things without my diary and phone.

“Chemo brain is real y’all”.

Today, on this sunny day I leave my room and my home with my dear friend. We head for her car and the park closest to our home. As we leave I notice the dead bush next to the house as resurrected and red tulips are in full bloom. My favourite flower is the Tulip. My first sight of a tulip was as a child using the new Windows XP, it was a beautiful background to the home screen. I fell in love with these beautiful bright yellow structured which appeared to worship the sun. Whenever I logged on, it was a welcoming picture to me and they seemed to make me smile. These beautiful red tulips did exactly what all tulips do to me when I see them.

From the moment I spotted them I had to take a picture of them as my memories were fleeting. I knew that day would be fantastic and it was. We drove down to the park we never visited and trekked into the woods. The scene was beautiful, just fabulous unspoilt beauty. I was slow but I took the environment and all the sensory stimulation it gave me. I accepted every colour, sound, feeling and smell. It was great, even if I would tire and would need random breaks. It was great. It made me smile and that’s what we all need in our lives in times of great sadness.

Find the things that bring a smile to your face. Never let darkness win.

The Bloody Nose

It’s been rough and tough. The chemo has really taken its toll on my body. I struggle to sleep, when I do I feel very tired. I know it’s fatigue and it comes with the treatment, I’ve been struggling with a sharp pain in my chest too.

The only comfort I have is my short trip to Tynemouth with my friends. Tynemouth is a seaside town with a beautiful ambiance. There is a beautiful priory and a few coved beaches. It’s just gorgeous. If you’ve never been, it’s a must see in the North.

We walk around and take a few pictures, I complain a lot about my chest. Our final walk is towards a lighthouse. My friend said she was taken there as a child and would love to see it again. So we walk and walk and walk. My feet feel like giant anvils and I begin to fatigue, I don’t think my friends understand how I must be feeling and see it as though I was being lazy. In truth I was just ill, and even though I kept a happy face and tried to pretend as though I was not, I was.

We return home shortly after and I retire to my bed. What ensues later on was truly a dreadful experience. The pain in my chest worsened and so did my breathing, I started noses bleeding and what followed was an almighty headache.  I did not wish to worry my doctors and did not call in (Please do if this happens to you). The nosebleeds were the scariest thing I’ve ever seen. Waking up from a deep sleep feeling my pillow was damp and wet, I turn on the lights and my beautiful white pillowcase was a horrid shade of red and bits of white. There was blood on the side of my face and arm, that’s when I called my doctors. The headaches persist for seven days, and I’ve been told nosebleeds occur when you platelets are low. The nosebleeds continue for two days and later faded into history.

The moral of this story is: If there are any sudden changes to your body, call your team because it might be dangerous and doing so might save your life. In my case it wasn’t so serious but everyone is different and lead to lose of life, if not managed with care.

There’s only one you and your life is valuable to those who love and support you.

Can Soup Change the World? I’d like to think so.

Due to the fact that I have limited movement and I fatigue easily, I have spent a large amount of time watching inspiring documentaries and shows at home and in hospital. One of the documentaries I watched was based on the charity Detroit Soup on CNN. It amazed me how little things people do can change so many lives and change the environment of society. Detroit soup was thought provoking and truly sang to my heart.

The idea behind it is very simple, people from all around Detroit meet at a designated location, pay a small amount of money to get into the venue, are given soup and bread, are given a place to sit and then watch different presentations from people with ideas and business plans, after which they vote for which organisation or group they believe should be given the money they paid when entering the event. The money is used by these amazing groups to start businesses, charities and outreach programmes that benefit their local area. Watching this restored my faith and hope that people truly think beyond themselves.

One of the first businesses to receive funds through Detroit Soup started a small fashion company. They trained women from disadvantaged backgrounds to sew and make inspiring clothing which provided them a means to financially support themselves and their families. I sat there watching, crying and being truly inspired by these people and the things they have done for society, wanting so much to do exactly the same.

I thought of ways in which it could be adapted here in the UK, in small towns and even old industrial cities. The unemployment levels in the North East of England are high and most people who are in some sort of employment are in zero hours positions. Zero hour jobs basically mean you really have no clue how many hours you are going to work in a month. You could work 40 hours in one week and in the second only work 2 to 3 hours. Most people I know on zero hour jobs want something much more structured and predictable. I also thought of places in Nigeria, where this could also be adapted.

Soup!!! So simple but yet is loved by all and fills many with warmth. It is cheap to make and can feed many. It’s a brilliant idea and I fell in love with simplistic creativity behind it. Coming from a business background, I really didn’t feel the need to pursue money and wealth for myself, but I love the creative and simple entrepreneur who wants to make a change in society and help others along the way.  Detroit Soup was beautiful to watch and truly was one I watched over and over again. The businesses they created and support network formed was truly inspiring would leave you and other around you feeling touched and possibly a little more altruistic.

Recently I have found some charities that have similarly come up here in the UK such as The Soup Cluster found on ProjectDirt.com

No bald head here.

Today, today is the day. Today is the day I get to pick the colour of my future headpiece. The colour of my pretend hair, the hair that will fool the public and say I am healthy. No bald head here, look away. I have an appointment booked at a salon to pick the colour of my free wig. I go to the appointment with hesitation, I’m still upset that all of this is happening to me now. I’m glad their are many people out their who care but I can’t seem to understand why me and why now.

I am not complaining to be honest,it’s run by an amazing charity which helps people with alopecia and others who will lose their hair due to cancer treatments. A few businesses sign up with this charity with the aim of helping us and making us feel a little more confident and brings a smile to the faces of many.

It’s an amazing experience given to few. I was told how expensive these wigs would cost if I was meaning to buy one on my own. The hair pieces are donated by these lovely companies who have signed on to the charity scheme. I was referred by my lovely oncology nurse, on the first day of my chemotherapy treatment, and today is the day I get to meet the hair team at Janet Maitland in Durham.

It was amazing, the manager at the salon was super nice and understanding. We sat in her office drinking a nice hot cup of tea, looking over different possible shades of hair colour. I pick one that isn’t necessarily dark but a bit on the light chocolate side. She lets me try on a sample wig because the shade I asked for has to be ordered in. The wig fit was perfect, it felt great to have something so natural on my head again. Excitement and joy was all I could feel during that appointment.

I left that appointment with hope and joy, looking forward to my next appointment at the salon, with my new wig in tow and a new look on life. My friend and I drive home with a huge smile on our faces. Since diagnosis and beginning treatment I have held a brave face in front of friends, I have laughed off things which actually hurt me within. Losing my hair wasn’t something I wanted or needed. I’ve worn wigs in the past, I’ve worn extensions and I’ve chemically processed my hair too but I have always been in control of my hair (unless it was one of those days my hair just wouldn’t obey).

 

 

When will it all end? Chilli.

Day 17 and I’m back in for a second booster session. I really haven’t been great at keeping information written down. A lot keeps going on in my head and I can’t seem to remember to put it down. I’m constantly sick and dizzy, I feel a continuous fuzziness in my mind.

Saw a friend today in town, ate a small stake, it didn’t taste so great. The chemo leaves a funny taste in my mouth. I know I was informed about this but I must admit I didn’t completely believe I would eventually experience this. Different types of food taste completely different from what they originally tasted like. My sense of smell is to me, heightened. A little twisted and odd but very sensitive. For example, the smell of my friends car after she has had a smoke or two doesn’t seem to bother me at all, it has such a strange sweet smell to it.

I struggle to sleep and my temperature fluctuates through the evening. However, I am glad my appetite has returned and I have found that a small spoon of extra hot chilli paste can stave the need to be sick for a short time. My doctors don’t recommend I do this but I think it honestly helps me, so I carry on. I would not recommend this to anyone, especially if you have a low tolerance for the hot stuff.

I was told before beginning chemotherapy, I was not to expect my periods to return for a year or more, but it’s has suddenly started. Well it’s strange but it’s a good sign, I’m still fertile but with only one ovary left, I worry about the number of eggs I have left. My doctors reassure me that it’s a good sign and I should be happy, even if they honestly think it’s odd.

Day 9

Day 6 to 8 weren’t great experiences, constipation, then diarrhoea, then the sickness. Just can’t seem to win. Endless hot flushes followed by shivers and a continuous need for blankets. Clumps of hair appear to be falling out now. Don’t know if it’s too soon but I haven’t met any patients with a similar treatment as mine to ask. My oncologist says everyone reacts differently to treatment and I don’t question is answer.
Thinking it’s time to cut my hair a little closer to my scalp. My skin feels awfully tight and itchy, it’s just weird to explain. Thinking positive today, I get to go home and be with friends in my personal space. I finally get to eat normal food again; I’m so excited I could burst.

Day 2 to 5

Day 2

I woke up feeling very ill. I feel dizzy, woozy, and nauseous and in a lot of pain. My bed feels like a rock and complained about it. Found out my bed was made for the last patient who had bed sores. It was changed later in the afternoon, it feels better now.

Treatment seems to be going well. My blood tests keep coming back positive so I have nothing to worry about. My sister would be going out into the city tomorrow to shop for clothes. I wish I could go too; it’s so boring in here. I can’t seem to focus on anything on the TV screen. Chris, Candace and Kristiana came to visit today and brought some stuff I needed tonight. It was good seeing them, I wish I could leave with them but I know that’s not possible. I make light of how I’m feeling. I haven’t been able to go since surgery so I feel so constipated. I know it will take some time before my organs return to normal post-surgery but I wish I was better now.

I’m still very hopeful and look forward to what day 3 brings. I tire easily now and feel like I should get some sleep.

Day 3

I woke up feeling more nauseous than ever. It carries on through the day; I wonder how long it will last for. I feel a lot more tired and stressed out than day 2. I’m actually incapable of writing and require my sister to write in my diary. My head feels funny and my hair feels dry, it’s too soon for my hair to fall out right? My chest hurts. I’ve had all my tests and they seem fine, chemo begins in the afternoon.

Time is 10pm and a doctor has just attended to my chest pain complaints. She advised blood samples should be taken; looking into possible heart conditions through these tests. I still have the urge to throw up but it just won’t happen. Those anti-sickness pills are strong stuff.

Day 4

I have been throwing up quite a lot today. I’ve been giving a stronger anti-sickness injection and it appears to be working. I’m still constipated and feel very weak. Perhaps tomorrow will be better and I will finally be able to go. My sister will be leaving tomorrow and I feel sad about this. I worry that my chemotherapy won’t work and I might never see her face again. She got me some noodles from a noodle shop in town. My appetite is weak but I ate some of it and put the rest in the fridge. Spoke to my mother and father for a short while. I try not to worry them and tell them I’m feeling better.

Going to sleep now, still feeling bloated.

Day 5                               

What a day. I receive suppository, laxatives and an enema and a half. Gosh this is all crazy. My sister left at past 6 this morning. I’m feeling very lonely again but I know it’s for the best. I cheer myself up, I won’t let cancer win. I won’t let it get the best of me and isolate me.

I did it!! I finally went. Still very constipated even after all my body has been through today. My oncology nurse says I must try to walk even if I’m in a lot of pain. My strength is fading and I feel woozy.

My Treatment Schedule.

My BEP Chemotherapy schedule would include 3 cycles, which would last 3 weeks each. In the first week, I would arrive as an inpatient. I would go for my lung function tests and my hearing test, if they came out fine I would then get my blood work done to check for infection. If all came back clear, I would start my first course of fluids with magnesium to protect my kidneys, and then comes etoposide, followed by cisplatin and then bleomycin. Each first week in cycle usually last 5 days, mine would sometimes extend due to infection, reactions to treatments or other reasons.

The second and third week in each cycle would only last 24 hrs each. I would receive bleomycin only. I stay in hospital for one day only. Sometimes my treatments overlap each other for the same reasons I mentioned earlier. Before and during each treatment, I receive a load of medications including anti sickness medication.

Anti-sickness medications come in handy during chemotherapy treatments because you feel nauseated a lot. Sometimes you do become sick and just can’t seem to stop so it is very necessary to take your medication when given. If you believe that the anti-sickness medication isn’t working, it is best to let your oncology team and nurse know. They may prescribe something a little stronger than what you are already on.

I really can’t remember all the medication I was on at the time but I had stuff to protect my stomach, stuff for my bowls, stuff to prep for chemo, stuff to put me to sleep, stuff for infections and the list goes on. I have never been so drugged up in my entire life.

I must remember to mention that my sleep pattern was completely ruined. I had to be checked and observed every hour. I’m not complaining because doing this does save lives, it’s just one of those things you sacrifice during treatment. My oncology nurses were the bees’ knees and we’re so easy to talk to, even when I couldn’t sleep and all I did was ramble on in high haze.

What’s your cocktail? B with E and a little P

What’s your poison Mr?

I’ll have a helping of BEP, thank you kindly.

Better known as Bleomycin, Etoposide, and Platinum (Cisplatin), a delicious mix of poisons that is fed into your body to fight the cancer within. They work hand in hand to fix what ails you and also attacks those that don’t. See chemotherapy drugs don’t know the difference between healthy cells and sick cells, they attack both in equal measure in hopes that the cancer dies first before you do. Now I’m not complaining because cancer research has brought us closer to defeating the beast and chemotherapy serves as a means to win the war. I received my medication through a cannual in my arm, wrist and just about any part of my upper body with a willing vein.

Bleomycin

Bleomycin comes with a dark grin on its face. It makes you feel sick and nauseated. It kills white blood cells which makes you prone to infection. It makes your hair fall out and your skin change. It changes the colour of your finger nails. It makes you dizzy and tired. It makes you prone to bruising, bleeding and anaemia. It gives you a sore mouth as well, it’s a terrible feeling. You lose your appetite and desire to eat. Don’t worry too much not all people experience this and if you do, your nurse and doctor are there to support and prescribe medication to make treatment a little comfortable. It the long run Bleomycin is linked with causing pulmonary fibrosis. This is still quite rare but I was told I would have to let all medics know I’ve had Bleomycin added to my cocktail mix for the next 15 years, especially in cases where I would require the use of oxygen.

Etoposide

Just like its best friend Bleomycin, Etoposide seems to give similar side effects. Bruising, bleeding, nausea, dizziness, anaemia, death of white blood cells (causing infection), lack of appetite, fatigue, and of course, the dreaded hair loss. Etoposide however, not willing to be outshone by its friend add a few new side effects to the mix. It can add bouts of diarrhoea and like in my case you become overwhelmingly constipated. You bloat like a huge puffer fish, with uncomfortable wind and severe abdominal pain. Etoposide is also known to change the way our liver and kidneys function, however this returns back to normal post treatment. Etoposide all bares the risk of bringing on another cancer later in life, usually leukaemia but hey let’s fix this first.  Live now and let the future take care of itself. Etoposide also brings the tingles in hands and feet. I honestly believed I was becoming a super hero when I experienced this but it was worrying for me and has later lead to neuropathy. This is hugely uncommon but knowing how lucky I am, it had to be me.

Cisplatin (Platinum)

It behaves like both Etoposide and Bleomycin but it sometimes changes hearing and can cause tinnitus. It also changes your taste buds. Certain foods taste a bit tinny to be honest. Chilli becomes your saviour when engulfing bland food.

Other bits that come with your cocktail.

Your sex drive will change and the use of protection is vital, not only protection from STD’s but the possibility of transferring some of your cocktail mix to your partner (it can sometimes be found in body fluid and it is better to be safe than sorry) and it is not advisable to conceive during treatment. This mix can also affect your fertility and you should speak with your doctor about this. If you are breast feeding you are advised not to during and for some time after chemotherapy. There is also the risk of blood clots and fever or flu like symptoms.

Advice from Me.

• Raise all and any concerns with your doctors, nurses and oncology team.
• It you do feel feverish call an ambulance or your team.
• If you get a rash, bump, pain or struggle breathing, please let your team know.
• If you develop a cough or start wheezing, let your doctor know.
• There is no such thing as a stupid question and you shouldn’t be afraid of speaking up and voicing your concerns.
• There are many support groups and charities out there, don’t fight alone.
• If your temperature goes over 37.5 degrees Celsius or 99.5 degrees Fahrenheit call your doctor, oncology nurse, oncology team or an ambulance.
• Chemo brain is real. The struggle is real man.
• Surround yourself with family, friends and new cancer buds. It’s not all depressing and we don’t all just sit there looking glum.
• Finally don’t let fear rule your life. You may be tired, sick, nauseated and pumped full of pills but try to live a life of laughter, love and no regrets. Try something new. Watch that box set you said you always would. I watched a lot of extreme fishing with Robson Green and fell asleep to a lot of teleshopping.

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!