Ring That Bell.

Two weeks ago today – after four and a half months of trials, tribulations and transfusions – I had my final round of chemo.

But before I talk about that, let me go back a bit…

As you all know, cycle number four was very problematic, so I had a lower (read: normal) dose of chemo for the last two cycles. My side effects were not as harsh as they were before – I still suffered from muscle and joint pain, but at least my nerves did not feel like they were on fire every minute.

The day of my final chemo session was quite eventful. On that morning I was told that my neutrophil (white blood cell count) was too low for me to have chemo, so I had a blood test to see if there was any change in my results – if not, then my chemo would be postponed for a week. I was in two minds about this. I’d pretty much written off having chemo that day because I thought there would be no considerable change in my blood count to give me the go ahead; but I also wanted to have chemo on that day and ring the bell to signal that I’d finished. I saw so many other cancer sufferers have the pleasure of ringing the brass bell outside the chemo suite and I often imagined the day that it would be my turn. So when my nurse called back couple of hours later and said my neutrophil had increased to an appropriate level and it was all systems go, I was pleasantly surprised (well, not pleasantly because chemo isn’t pleasant).

So off I went back to the hospital and several hours later I. Rang. That. Bell (and got a round of applause).

Reaching the last chemo cycle is like being on a long-haul flight: you’ve been on the plane for hours, you’re fed up, cannot sleep properly and feel uncomfortable (probably because you haven’t got enough legroom). Then, the captain comes over the tannoy and says, ‘We are now making our descent towards our destination,’ and everyone is overjoyed before rushing to the toilet to freshen up.

When I finished, my main feelings were of happiness and relief. I still remember my consultant telling me last year that chemo would be for four-and-a-half months and thinking that it sounded an age away. But despite all the setbacks and sickness, the time went quite quickly. Each cycle had me settle into a routine where I felt like shit for the first week or two post-chemo, then slowly began to get better before knuckling down for another cycle and its rank side effects.

But that part of my treatment is now done and I’m very thankful.

Radiotherapy is up next, but I have to wait until my last chemo cycle is fully out of my system before I start. I’m fine about it and not nervous – unlike how I was before I started chemo. I’m feeling positive and hoping that helps see me through. Wish me luck!

Feeling the Pinch.

Well, my fourth bout of chemo was rather eventful.

I was slightly apprehensive beforehand because I was switching to a new drug. My previous one caused vomiting and nausea, so I hoped that the side effects for this drug would not be as bad. I asked about them and was told I would experience some sensitivity to my nerves.

Thus, the first few days after my chemo session were very different to the aftermath of previous ones. I didn’t vomit once, suffered no nausea and didn’t even feel fatigued. I felt surprisingly good, but what I did not realise is this chemo is a deceptive bastard because after such a positive start, things went to shit.

Three days later, I was struck down by niggling little spasms that started in my back and travelled around my body. It felt like I was zapped by a thousand volts under my skin, pinching my nerves from head to toe.

The pain carried on for several days. It was an agonising, niggling, fizzing and deeply uncomfortable sensation and I can imagine that the feeling is similar to arthritis (not that I have suffered from it). So much for being a fatigue-free zone – the tiredness seeped into my veins and I had trouble sleeping. Not even Paracetamol or Voltarol helped – I had to grit my teeth to get through it. Honestly, I preferred the nausea and vomiting.

The ‘zapping’ sensation eventually calmed down to a dull ache, so it was not as torturous. I’m hoping that it is not a regular occurrence after my remaining chemo sessions, but according to Breast Cancer Care, painful joints and muscles are a common side effect and ‘[your] muscles or joints may ache or become painful two to three days after you have your treatment’. Great.

Also, everything I ate had a weird aftertaste. Things I loved eating stayed on my palate and tasted strangely bitter. As it was Christmas, mince pies were on my radar and I indulged but I have gone off them. It might have been because of the chemo, or because I’m a glutton. Who knows?

Yet this was not the worst part.

A few days before Christmas, I had a sore throat which got worse by the day. It was unbearable – eating my Christmas dinner was a chore because it was so painful. Even something as innocuous as a bunch of grapes made my throat feel like I swallowed a set of knives. I called the chemo helpline (on Christmas Day) and the nurse said it was a side effect of the chemo, but to be honest, she sounded distracted, like she was waiting for her turkey. I felt terrible and couldn’t take anymore so I went to the hospital on Boxing Day, thinking I would be prescribed some antibiotics and sent home. Turned out I had severe oral thrush and neutropenia. My white blood cell count was zero, which meant I had no defence against the infection. I was put on a relentless course of IV antibiotics and stayed in hospital for five days. Plus, I had an incredibly obnoxious period that decided to join the party, so both my red and white blood cells were affected.

Oh, it was a spectacularly shitty cycle.

Each cycle has been different and problematic, but this was the worst. My body hurt so much and I’m not sure how I coped. Only in the past few days have I begun to feel more like myself, which was a relief because there were moments where I felt horrendous and a bit despondent. At one point, the nerve pain felt like it was never-ending, but I got through it in the end. Praise be.

Oh well. Onto the next one.

2018.

It’s very late and my mind is thinking about different things: my next chemo session (tomorrow); my need for sleep; Liverpool losing to Wolves in the FA Cup…

Then I thought about it being the first full week of 2019 and it hit me: I was diagnosed with cancer last year. Flipping cancer.

Yes, I have been writing about it and I’m not tearful or emotional, but thinking about how crazy and surreal last year was stopped me in my tracks. Right now I feel quite strong, both physically and mentally, which is great because my last chemo cycle was atrocious (new post soon come).

2018 was odd. It started ok, then Britain had the full works weather-wise: blizzards and floods, followed by the hottest summer we’ve had in years. But for me, that was obviously overshadowed by my diagnosis on that beautiful summer’s day in June and ever since then, things have been on hold.

When you are diagnosed with cancer, shit gets real. The things that I worried about before were suddenly not as important. Although I am a generally positive person who would big up family and friends alike, I was a worrier who could not see many positives in myself. I constantly compared myself to friends, family, colleagues, even random women walking down the street. I always complained about my hair (the irony!) my appearance, my weight, my personality, my achievements (or lack of). I was ridiculously hard on myself and never felt good/talented/smart/attractive or stylish enough.

In short, I felt like a failure.

I thought I hid it well, but some of my closest friends saw right through me.

I cared so much about what other people thought of me and was the type to over-analyse everything and it stressed me out. In hindsight, I was not good to myself at all.

Now my mindset has changed somewhat. Not that I don’t have moments where I dip back into negativity. I have dealt with various health issues throughout my life – but when something as life-changing as cancer comes up on your doorstep, it is another level. I found myself looking back at certain aspects of my life and shaking my head.

In the early stages post-diagnosis, I found myself wondering, ‘Why me?’ and my mood would go from sadness to anger and back. But then I found this quote from blogger HeyFranHey, which encapsulated what I was also thinking in my frantic mind because I believe that being mentally negative to myself contributed to my cancer:

“Replacing ‘Why is this happening to me?’ with ‘What is this trying to tell me?’ has been a game changer.”

Being good to yourself in life is key. Many of us think we are because we do a bit of meditation and go hard at the gym, but how well are we treating ourselves mentally? I’m not trying to preach but working the treadmill while your mind hounds you with stress and negative thoughts is no good. People workout to relieve those thoughts but how long until they come rushing back? Days? Weeks? Straight after you’ve finished in the gym?

Please be kind to yourself. Don’t do what I did and be unnecessarily harsh and self-critical. Sometimes it was like a balm to me; it was almost soothing to be unkind to myself.

I wasted over twenty years of my life with all that negative shit and I am done. Done with the procrastination, the people pleasing, the inferiority complex, the anxiety, the routine of beating myself up about everything. Because all I care about now is getting through this and trying to be good to myself in the process.

Good riddance to 2018. Here’s hoping that 2019 is a better year. ♥️

Transfusions and Confusions.

So there I was in the chemo suite, undergoing my latest blood transfusion – my fourth in a month – and I have hit that point: the nurses had trouble finding a decent vein.

Chemo has blackened my veins, my cuticles, my soul (I’m joking), so it’s getting trickier finding a vein each time, whether for chemo or a transfusion. Oh dear.

They played music from the 80s on the radio, which was nice but it was mainly power ballads on repeat and well… let’s just say I’m glad I had my headphones. I couldn’t tell the amazing nurses that ‘I Wanna Know What Love Is’ is a rubbish song and I heard ‘The Power of Love’ three times already and can they put my Spotify playlist on instead? After all, it wasn’t only myself in the suite – plenty of other people were there, all in the same boat as me and I’m sure that most of them love power ballads.

Blood transfusions are usually quite straightforward, it is the waiting that I can’t stand. As I mentioned, it was my fourth transfusion in a month and, considering the week I had, things could be worse.

Sometimes it feels as if my body is trying to sabotage me. I’m getting over another period which came on two weeks after my last (lengthy) one finished and left me feeling fatigued, fed up and emotional, often at the same time. On top of that, I had horrendous stomach cramps that felt like someone reached inside my body and pressed my sides until I felt sick.

As much as this illness does not deserve any of my tears, I’m not ashamed to say that I have had some tearful moments. I cried a few times last week because of my situation. I get annoyed reading people saying that women they knew who suffer(ed) from cancer ‘never cried’. As if when you are going through something as life-changing as this, you are going to be ultra-positive and stoic all the time. One minute, women are deemed ‘too emotional’, then when something like this turns up on our doorstep we are expected to be tough to show how we are beating the shit out of cancer. Plus, as a black woman, there is a perception that we are always strong but this is obviously not true. We are all human and crying does not show weakness.

Do not feel ashamed of crying or feeling emotional when going through cancer. Cry when you want to, because there will be times when you feel like giving into your emotions and rage against the world. Just don’t let it cloud your everyday life.

Anyway, on the plus side, I’m now halfway through my chemo: three sessions down, three to go. I’m also wearing rather fetching turbans to cement my fashionista status (this is a lie – I’m usually five years behind fashion-wise).

Blackstrap molasses have become a regular part of my diet, as they contain a high level of iron. I dilute one or two tablespoons in a small cup of hot water and drink it. If you are completely mad, you can try eating a tablespoon or two straight from the jar but it is even worse undiluted, with a wretched taste and a texture like gritty treacle.

This process has been challenging but, despite the setbacks, I’m getting through it. There is a weird routine to chemotherapy that you settle into quite quickly. Like most things in life, you have to breathe deeply and get on with it the best way that you can. Of course, there are moments when I wonder how the fuck did I get here, but on the whole I’m focused and absorbing all the positive vibes being sent my way.

The Wall.

Just had the worst week (and a half) of fatigue ever. Thanks to a combination of chemo and my period, I was a hot mess.

I had got over the worst of my post-chemo nausea and was beginning to feel better. I was not expecting my period to show up but ‘Aunt Flo’ rocked up like a gatecrasher at a party and sapped all my energy for the whole week.

Most days I felt so drained, like a pig in an abattoir. One day I went for a 30 minute walk and resembled an old woman trying to walk up Mount Everest. I was so tired that I had to hold onto my mum instead of the other way round. But I did it and it felt like an accomplishment.

I felt better the next day so I went to do a bit of shopping and ended up having to sit down a few times, as the wall of fatigue would hit me and I could barely walk. Fatigue is frustrating because it makes you feel like you are lazy and that you must fight through the tiredness barrier. But you can’t. The only way to fight fatigue is to not fight it, but that meant I had to go to bed when I got home – again. It can leave you with a sense of guilt but, when that wall hits you it knocks you out, so all you can do is sit down, throw a blanket over yourself and REST. Some days I couldn’t be arsed to cleanse my face properly because it felt like a chore, despite promising to pamper myself whenever I could.

To relieve my extreme tiredness, I took everything I could find to boost my energy levels: vitamins, tonic, the lot. It helped but only up to a point, as I then discovered that my blood count was very low – too low to have my next chemo session. As a result, I needed immediate blood and iron transfusions and had to stay in hospital overnight as a precautionary measure. The transfusions were ok, although there were a couple of issues. Finding a decent vein proved slightly problematic and the cannula was deemed too narrow for the blood to go through after it had been put in (typical!) and I was concerned that they would have to take it out and put in a new one… but they didn’t. Huzzah!

Since my transfusions I feel much better and more energised, but I know that – come chemo time – things will go downhill for a few days before I pick up again. After a couple of rounds of chemo, it becomes routine – although not the sort of routine you want to keep up forever. Just got to keep on keepin’ on.

Finding Joy.

One thing I have learned during this process so far is to find joy wherever I can. Chemo is a bitch. The nausea gets to you and some days all you want to do is go back to bed as soon as you have woken up. Sometimes I wish I could magic the cancer away and think if I went to the gym and exercised hard enough all this would disappear, but life does not work like that. So I distract myself through various means and try to be as upbeat as possible.

As well as writing on my blog and wasting time scrolling through social media (Twitter is the devil), I have been doing my painting and sketching. I’m not one to blow my own trumpet but I’m pretty damn good at art and it’s very therapeutic for me, plus I love the sense of achievement when I finish a painting.

I try to stay physically active, even though the fatigue knocks me out most days. Today, I’m feeling pretty exhausted but restless at the same time, so my aim is to do some yoga to wake and shake myself up. When the wave of fatigue hits, all you’ll want to do is go and sit on your bed and that is recommended, but if you can do something active, go ahead but do not over-exert yourself.

Fatigue during chemo is like nothing else – on a normal day before my diagnosis, I’d have tried to push through any tiredness and keep it moving. Now I can feel tired, breathless and lethargic all at once, so I am learning to listen to my body (something that we are ALL guilty of not doing enough) and rest. That said, I’ve also been enjoying the beautiful Autumnal weather by going for walks. I always thought that Summer was my favourite season, but now I think it’s always been Autumn as I love seeing the leaves change colour and how beautiful everything looks.

Despite having a long list of programmes and films that friends and family have recommended, I have only watched a handful so far. Killing Eve was batshit crazy but brilliant and Jodie Comer was incredible (also, someone drop her skincare routine please. Her face is flawless). I’m also watching – and loving – Informer and stopping myself from binge-watching the whole series.

Music is my big love but I haven’t listened to it as much as I normally do because (for the first few days post-chemo) my ears heard things differently. If I listened to a song, it would sound slower than usual – a bit like when you have a cold and everything sounds a bit off and woozy. Thankfully, it’s a temporary thing and my sound went back to normal after those few days.

Another thing that I absolutely love is ASMR. It’s been in the spotlight recently because celebrities are getting into it, but I’ve had love for it long before it became a trend. It is the most relaxing thing to listen to and some of the ASMRtists (as they are known) are the eighth wonders of the world in my opinion. I put them on and no matter how tired or restless or emotional I feel, I am a zen-like figure of calm by the time I finished listening to their soothing voices. I highly recommend the likes of WhispersRed, LoveToday, MiaASMR and LauraLemurex – they are all on YouTube (you’re welcome) and all I will say is if you do not accidentally head-butt your keyboard while listening to them speak, are you really doing ASMR properly? (I’ve done this myself – highly embarrassing but worth it).

I also try to pamper myself whenever I feel up to it. When I’m not trying to master how to tie my headscarf properly, I slap on a face mask and attempt to feel like a goddess. Always be mindful not to use anything too strong or perfumed, as I have noticed that my sense of smell has gone slightly bonkers during this process and body creams with fragrances that I used to love now make me retch. I bought a cucumber and green tea handwash before I started chemo and I absolutely loved the scent of it. Now, I cannot bear it because it makes me nauseous.

Keeping Abreast: The Story So Far.

In order for me to bring you to the present, I have to go back to the past, even though people say you shouldn’t look back. But – for obvious reasons – it has to be done.

This is a long post so you might want to get a cup of tea. Or a shot of rum…

I was diagnosed with breast cancer four months ago. When my consultant told me, it was as if all the noise had been sucked out of the room. I knew I had a lump, so I got it checked and managed to convince myself that everything would be fine. Instead, on a beautiful summer’s day, I was told that the lump in my breast was cancerous.

I don’t remember much in that initial blur, other than my mum and I being in shock and the consultant saying that the cancer was ‘treatable’. I clung to that word like a person being rescued at sea clings to a rubber ring.

We were ushered into another room with one of the breast care nurses and it was there that I cried my eyes out. Then I had another biopsy a few minutes later to check whether my lymph nodes were affected. My mum reassured me that whatever happened we would get through it, but my head was all over the place thinking about the worst-case scenarios.

Telling my family and friends was hard because I would be tearful every time I told someone close to me. My dad had no idea about any of this because I did not want to worry him until I knew the results. When I told him, he gave me a huge hug and tried to hold his emotions in check. I also told my brother and sister that same day and there were lots of tears, hugs and some laughter, which was what we all needed.

My cancer situation triggered lots of emotions. Naturally I was upset, but I was surprised at how angry I was. The weather was glorious and I was looking forward to a great summer, going out and enjoying life. Now, all that was on hold and I didn’t know how long for.

The week leading up to the results of the second biopsy was awful. Everyone I know sees me as a positive person but I constantly worried that the consultant would have more bad news for me. When I went back, I discovered that my lymph nodes were also affected, which was not great but I felt relief in knowing because waiting for results when diagnosed with breast cancer (or any cancer) is the pits.

Throughout my life, I have had various health issues and managed to deal with them – some trickier than others. But this was something else. I had numerous operations when I was younger and, if I’m honest, did not always understand the enormity and complexity of what I went through. Whereas now, I’m older, wiser and understand what I’m facing – and I’m not sure which is worse. When I had those operations, they were usually the last thing on the agenda and once I got over that hurdle, I was on the road to recovery. With breast cancer, the operation was the beginning.

I had a lumpectomy and axillary node clearance two weeks after my diagnosis, then underwent another operation a few weeks later. The wait for the results in-between both surgeries was hell. So many thoughts ran through my mind – what did they find? Would I need another op? What if it’s worse than expected? I’m an over-thinker anyway, so my brain ran riot with all the possibilities. I’m surprised I didn’t combust, especially as this summer was one of the hottest Britain has ever had. It was beautiful: wall-to-wall sunshine and blue skies everyday, but wearing a drain in tropical 36°c heat was grim.

My results post-second operation came through three weeks later and I was (to be perfectly honest) shitting bricks. The consultant told me that the surgeries were successful, the cancer was gone and no other cancerous cells were detected, but I would have to undergo chemotherapy and radiotherapy. I was so relieved but a bit daunted by what lay ahead.

I’ll admit I knew a little about breast cancer but not a lot – basic layman knowledge. I assumed everyone who had it would need chemo, but nope. If caught early, you might have a lumpectomy and possibly some radiotherapy and that’s it. That was not my situation but still, it could be worse.

Things are ongoing and my next few posts will talk about all that.

Now, ladies (and gentlemen), I cannot stress how important it is to check your breasts. If you feel awkward doing so, then you need to start getting acquainted with your body. If you think something feels a bit odd but not enough for you to go to the doctor – DO IT ANYWAY. Too many people choose to ignore things instead of confronting them. Don’t do this. Check yourself and get checked out. ❤️