Games Without Frontiers

My earlier blogs featured song titles.  I gave up after a while because I couldn't think of suitable ones for some of the things I was writing about. But on this occasion, I've think I've found something appropriate. Hopefully all will become clear...

Fourth chemo

I had my fourth chemo cycle the other day.  This time it was the dreaded Docetaxel.  I say 'dreaded' because everyone I have spoken to says how it wipes you out and has particularly nasty side effects e.g your nails go black or fall off, you can get sore feet and hands, you can get bone/joint pain, your fingers go numb etc. 

The good thing about the fourth cycle was that the drug went in through a drip rather than a manual injection.  I was able to sit there and relax more than I had been able to do at my previous visits. 

Docetaxel by drip

The timing of my appointment was also a bit later.  I was gutted when I went into the chemo bay and saw the tea trolley disappearing around the corner.  Blast, I'd missed the tea and biscuits!  However imagine my delight when about half an hour later lunch turned up.  It was soup, sandwiches, yoghurt or fruit and a cup of tea.  Heaven.

The chemo infusion only took about an hour.  Afterwards, the nurse removed my picc line as the doctor the previous day had felt that it was positioned too high in my chest and was possibly contributing to my breathlessness.  Now, as the picc line was secured in my vein with staples it was rather sore when the nurse unclipped the line.  The other patients looked over either in wonder or in horror as they saw me cover my eyes and grit my teeth.  And then in a flash, the line was out!  Not too bad, actually.

I'll get the picc line repositioned next week.  In the meantime, I can have a proper shower or a nice deep bath and not look like some strange contortionist wearing cling film trying her best to dodge water so as not to get her arm wet.

At the time of writing, the soles of my feet are incredibly sore and my fingernails are beginning to feel sensitive.

It's a knockout!

The Saturday after the chemo wasn't a good day.  I had stopped taking the steroids the day before so I was really wiped out.  I slept on and off for 18 hours that Saturday.   

In the evening, I got out of bed as I felt I needed to get up for a while.  As I walked around the bed, my head started to swim and my vision became blurred.  I got extremely dizzy.  I tried to get back to my side of the bed to lie down when all of a sudden I collapsed and hit the back of my head on something.  My first thought was, 'Oh, I hope my husband heard that.'

The next thing I remember was opening my eyes and seeing my husband leaning over me, holding my hand and telling me not to close my eyes.  

I had knocked myself out and was lying on the bedroom floor.  Luckily he had heard the thud, thought it was our son moving around but decided to check on me anyway.  He found me stuck between the wardrobe and the bedside cabinet.

I felt like I was in a dream.  I could see my husband's face through half closed eyes and hear his voice through mental fog.  I just wanted to lie there and go back to sleep.  I knew that the back of my head was wet. Shit, I thought, I've cut myself.  I put my hand up to feel around and looked at my fingers.  I was relieved to see it was just sweat.

I managed to sit up with my husband's help but was very groggy.  I then vomited a couple of times.  My first thought - and this is absolutely true - was to feel annoyed about the waste of good homemade soup and cheesecake.

My husband rang the Oncology Helpline who told him I had to go to Accident and Emergency [Emergency Room] at the local hospital.  The Helpline said they would ring ahead and organise an ambulance for me but as it was a Saturday night and the hospital was under pressure, we agreed I could go by car.

I arrived at the hospital about 11pm and as a chemo patient I was fortunately fast tracked.  I was still awake and lucid but all I wanted to do was to go back to sleep.  At 2am, after having my blood pressure taken, heart checked, blood and urine tested, and a test for concussion, the duty doctor sent me home having concluded I was probably dehydrated. 

The lesson here is that I have to drink more fluids - at least 2 litres every day not including tea or coffee - and not to stand up too quickly.  I ended up with a bit of a bruise on the back of my head.  I was very, very lucky. My husband is a bloody hero.

A week later and coincidentally my son has just gained a St John Ambulance Youth First Aid badge and certificate.  Slightly too late for last week but at least I know he's got some handy skills in case I do something stupid again.  

The first Belfast Giants game of the season

It was the start of the ice hockey season yesterday and I was debating whether I should go to the Belfast Giants exhibition game against the Manitoba Bisons.  Yeah, hell why not.  I reckoned that if I sat somewhere quite isolated then I might not pick up any infections.  

I have a pink Belfast Giants jersey which I bought a few years ago in support of breast cancer (ironic, eh?).   So I put that on, plus my teal bandana, and sat in a quiet area of the arena with my husband.  I bumped into some hockey friends who gave me hugs and came over to chat to me.  

My Belfast Giants breast cancer jersey

I was surprisingly vocal during the game.  Those who know me know that I normally am but I wasn't sure I'd have the energy on this occasion. 

I was glad I went as I got out of the house and enjoyed myself.  

Manchester United v Leicester game

My husband is a lifelong Manchester United fan and whilst we were at hockey last night, he had recorded the game so he could watch it when we got home.  He avoided Twitter and Facebook all night so that he wouldn't inadvertently find out the score. 

When I got home from the hockey game, I put the TV on, as I do.   I walked into the bedroom and then I heard a lot of swearing.   Unfortunately, I'd left the TV channel on Sky News.  What was the first thing that he heard?  The bloody score.  Oops.

Enjoy life

I think it's important to still try do the things I enjoy during chemo, even if I have to make some adjustments.  I found it helps to keep some a degree of normality in my life and is quite therapeutic.   

I also don't want the treatment to define who I am and constrain me too much.  That's not to say I will take unnecessary risks, but it's about being sensible, listening to my body but also making the most of life and opportunities that present themselves.  Chemo is crap but I don't want it to put me in a box and throw away the key.

Games without frontiers.  Hmm, perhaps a way of helping me look a little differently at life now?  

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I'm no longer scared

So, I've had cancer and am still going through chemo.  It's an interesting journey I have to say.  At the beginning I felt terrified, lonely and overwhelmed but now I'm on my journey I feel much more positive and realise I have lots to look forward to.  

I know that the drugs that are hammering my body to help keep this horrid disease at bay are doing me good, even if they don't have very nice side effects.  I know I've had a wake up call and I feel I've dodged a bullet.  It's like I'm finally waking up and smelling the coffee.

My new normal

The lumps, dents and scars in my armpit and boob will be the new normal, according to my oncologist.  I have to get used to that, but you know what?  Those things will be a reminder of what I've been through and will surely help me not to take things for granted again.   I aim to tackle life a bit differently now and to not sweat the small stuff.

I've even started to like listening to country music.  What's THAT all about?!

Holidays abroad may be more expensive due to more costly travel insurance because I've had cancer but, hey, staycations may be the new normal.  Talking of which... 

A wee break

I managed to get away for a couple of days last week with my husband and son to Warrenpoint, courtesy of a lovely friend from ice hockey.   The break from my four walls and a change of scenery helped to recharge my batteries and as my tastebuds had returned (albeit temporarily), I was able to eat normally again which was heaven. The scenery was stunning with buzzards flying around between the mountains.  It was absolutely wonderful and so peaceful.  I felt invigorated when I left.

Looking over Carlingford Lough at the Republic of Ireland

Carlingford Lough

Warrenpoint looking across from Republic of Ireland

Changing my outlook

Cancer is a very serious disease but it has touched my life in a way that I could never have imagined - both bad, and strangely, good.  It continues to change my outlook on things, but I have to admit that some of my pre-cancer thoughts and behaviours are still ingrained so they will take time to adjust.  But I'm determined to approach things differently now.  

There's a quote that one of my new found friends with incurable cancer says makes her feel strong:

"The devil whispered in my ear, 'you're not strong enough to withstand the storm'.  Today I whisper in the devil's ear, 'I AM the storm.'"

Take that, cancer!  Nothing can scare me now. 

PS

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Hair loss and headwear

A bit of a light hearted 'photo' blog this time as I'm feeling a lot better today.  I thought I'd share some of my headwear with you, some of which I've had for years.  I'm going to start with a picture of me with a bald head for comparison.  For those of a nervous disposition, look away NOW!

My 'Dr Evil' look

A silk scarf that a friend with cancer gave me

My 'Monty Python/Englishman on the beach' look

A deep green wig from a good friend

A purple wig from same good friend

A wig I bought for fun years ago

My Cher wig from a fund raising event

God knows why I have this one

A gift but I have no idea who from

My teal (for the Belfast Giants) bandana

My Belfast Giants teal wig

My sleep cap

Someone made me this ice hockey helmet #47 #workbootson

My NHS wig

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Ups and downs

This latest bout of chemo has hit me harder than the earlier ones.  I've had no energy and when I walk I find I get out of breath quite easily.  I just want to sleep or sit on the sofa and watch box sets on Netflix.  I couldn't even face the thought of writing a blog.  But I feel quite a bit better today.

Infections

Although chemo can be a life saver, it can play havoc with the body.  For example, over the last couple of weeks, I've had thrush in my mouth, a tongue like a sponge and an infected little finger.  I've been desperate not to let the infection get worse as that could have serious implications. As my body can't fight the infection on its own due to compromised immunity, I'm now on my third course of antibiotics and second lot of ointment.  

That'll teach me to try to pull out a hangnail (if you're on chemo and tempted to do it, DON'T!).

White blood cells

I also had to have a white blood cell injection because my white cell levels were low.  It went into my stomach fat (I've plenty of it) and was pretty quick and painless.  My bone marrow should hopefully start to produce more white blood cells in time for my next treatment.  

I was a bit nervous about the injection as I'd heard some grim stories about the side effects such as bone pain but luckily I had nothing of the sort.  I was a bit alarmed however when I looked at the composition of the injection and 'e-coli' was mentioned.  Bloody hell!

Food and drink

There's one thing that has really pissed me off: food generally tastes disgusting.  I love my food so this is a particularly unwelcome side effect. It has been especially bad during the first two weeks of this latest chemo cycle.  Every mouthful has been like eating cardboard.  

The thought of certain foods and drink also makes my stomach turn. Last week the only things I actually wanted to eat were salty items such as roasted peanuts, crispy onion rings, Ritz crackers followed by Starburst as dessert.  Healthy, eh?  

Even tea and our tap water, which usually tastes crisp and pure, tastes weird.  As for chocolate (including a lovely homemade chocolate cake a neighbour gave me), it feels far too rich and cloying and I've struggled to eat it.  I never ever thought I would say that about chocolate.

  

I did manage to meet up with a couple of work colleagues for a few hours.  Whilst they knocked back cocktails (with my blessing even though I was as jealous as hell), I stuck with the mocktails.  Even the bubbles in the mocktails made it feel like I had a million tiny needles shooting into the roof of my mouth every time I took a sip.

Listen to your body

What I am doing though is listening to my body more.  If I feel tired, I take a nap.  If I can't walk too far, I stop and sit down.  I try not to rush around as much as I used to but I sometimes forget and then my husband has to nag *remind* me.  

As my taste buds have been slowly recovering, I have actually felt like I want to eat more fruit, salad, vegetables, olive oil and brown rice.  It's strange how the human body seems to know what it needs.

I look forward to the day I can start to taste the delights of food again.  I intend to savour every mouthful. 

PS

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