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?  

PS

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Days like this

One week on from chemotherapy and it's been a strange week to be honest.  I've been up and down, both mentally and physically.

Day one

I slept badly the first night of chemo, but I suspect that was very much due to the steroids.  During the day, I was listless and a bit down.  I binge watched episodes of Better Call Saul (getting better every season) and then fell asleep on the couch for about an hour and a half.  

The next night I was quite tearful when I went to bed.  My head was telling me that my body was literally being poisoned.  It simply didn't feel psychologically right for me to have these toxins pumped into me which were aggressively invading my whole system from inside out.  I knew my treatment was going to nuke any stray cells and act as a sort of insurance policy but my head just couldn't accept it.  Even visualising sitting in the chemo bay and the massive syringes being inserted into the cannula for my next treatment made me feel quite distressed.  

I kept touching my hair too to see if it was starting to fall out but it wasn't. I became really upset at the thought of losing my hair, despite my earlier bravado.  My mouth also felt like the bottom of a budgie cage but the wonderful Oncology helpline recommended a specialist mouthwash for me, which helped.  Luckily, I had no sickness so at least the tablets were working.

I kept telling myself that I was glad that it was me that had the cancer and not my husband or son.  That would have been devastating and I honestly don't think I would have been able to cope if it was either of them.

I felt like I was descending into quite a dark place. 

Day two 

The second day was quite a bit better.  A couple of bandanas that I ordered online turned up, one in 'teal', the colour of the Belfast Giants ice hockey team.  I fully intend to wear that when I eventually get along to the new season.  

I also went to the Move More class and everyone was delighted to see me.  I had bags of energy, courtesy of the steroids, and reckoned I could have tackled the class ten times over.  

When I got home I did two lots of washing, hung it on the line, potted a load of garden plants and cooked dinner.  My goodness, these steroids are GREAT!*

Day three

I slept 10 hours and then fell asleep on the couch for another three hours.  Blimey, 13 hours in total.  I was starting to feel quite spaced out but I didn't feel ill or have a temperature.   I think I simply had had too much sleep.  

My sense of smell also seemed to have become very acute and the thought of drinking coffee made my stomach churn.  Crikey, life without coffee.  Is there such a thing?

Day five

I got tearful again and said to my husband, 'I want my life back.'  'Take it back then,'  he replied.  And you know what?  He was bloody right.  I don't want to be sitting around feeling sorry for myself, scared stiff of what the drugs will do to me, scared stiff of whether the bastard cancer will return.  

I got off my backside and went for a walk, had tea and a scone, bought a floaty, sequinned top and two new gorgeous fish for my pond at a bargain price.

Some beautiful flowers had turned up whilst I was out, but there was no message from whoever had sent them.  I later found out via Facebook that it was from some of my former colleagues.  Love you loads, guys.

Day six

I walked down to my local shops for some exercise.  The heat was getting to me.  I wore my new floaty top, a bandana to keep the sun off my scalp and some dangly crystal earrings.  It was only when I saw my reflection in a shop window did I realise I looked like I was going to tell someone's fortune at a funfair.  Ah, well.  I've always wanted to be an eccentric, middle-aged, English woman.

I mooched around a bit and ended up in the Marie Curie charity shop where I found a giant Louis Vuitton leopard print scarf for £6.00.   Hmm, nice for when I get my bald head, I thought.  Little did I know that the full price of such a scarf would usually be in the hundreds of pounds.  What a bargain.   

I have a feeling that charity shops are going to be my new favourite place.  I'm going to need to go back to work eventually to pay for all the stuff I'm buying.

My Louis Vuitton £6.00 bargain

In the evening, my husband and I went for a walk on Bangor seafront.  I had three scoops of Morelli's delicious ice cream.  A girl's gotta have a wee treat now and again.  Well, OK, all the time in my case.

Costa del Bangor

Day seven

The weather today has been very muggy.  I dithered about whether to do the Wednesday Walk as I thought it might be too much for me, especially as the Helpline had advised me to take it easy and not overdo things.  Sod it.  I reckoned I could always come home if I felt it was too much.

I stuck on my three inches of make-up, my sunblock, my NASA baseball cap and my bottle of water and arrived at the meeting point.  The group were so pleased to see me and my new Canadian friend (the one who I still cannot believe had read a book whilst Wayne Gretzky played - see 'Getting out and about') gave me a massive hug.  The leader of the walk also made sure that I was well looked after.

As we started to walk, we spotted a woman pulling a covered cart.  Now, people in Northern Ireland are incredibly friendly and can't resist a bit of a chat with visitors, and so we all had to ask what she was doing.  It turned out her name was Anna, she came from Idaho and she was literally walking the world to raise awareness of the need for clean drinking water.  She had done the USA where she said she had run out of land and so was now doing Europe, Ireland in particular.  Anna had only got off the ferry in Belfast a couple of hours earlier.

Anna

We all thought what Anna was doing was absolutely marvellous so we crowded around her to have our photos taken.  We then dragged her to see Van Morrison's house and Cyprus Avenue, made famous in Van's song of the same name.  She really seemed genuinely delighted by this diversion and we were too.  

Van Morrison's house

Good luck, Anna.

Go to Anna's world walk website 

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*blah, blah, blah, usual common sense rules apply etc

Starting chemotherapy (almost)

This morning I went to the hospital to start my chemotherapy.  Or so I thought.  It turned out that I needed to go through some pre-assessment stuff first and then I would start the actual chemo tomorrow.

I went to the Bridgewater Suite at the Belfast City Hospital where I was given a contraption like you get in TGI Friday's (I'll have a full all day breakfast please).  It was actually quite a welcoming place, all bright and airy and buzzing with nurses and doctors. 

I sat with my husband drinking coffee and getting up and down to go to the toilet.  I must confess my nerves were a little on edge.  I was like a cat on a hot tin roof.

The TGI Friday buzzer

Blood and heart

I didn't have to wait long before my TGI Friday buzzer went off.  I went through to the Assessment Unit where a lovely nurse sat me down and took two vials of blood.  This was so that she could check things like my liver/kidney function, white cells, platelets etc.  

I also had another ECG to check my heart's rhythm and electrical activity.  It literally took five minutes.  My heart rate was 'excellent' apparently:  51bpm.  I was recently told I must be fit to have such a low heart rate.  Yeah, right.

Helpline

I had a chat too with a breast care nurse who explained about chemotherapy, its side effects and what to do if I felt unwell at any time. The overriding message - which she and everyone else I spoke to today kept drumming home - was that I absolutely had to ring their 24 hour helpline if I had a temperature or didn't feel well.  They would honestly shout at me if I didn't.  Even if I had any doubt about whether to ring the helpline, I had to ring it.  There could be serious consequences if I got an infection and they would be able to help me quickly if I contacted them.  

Side effects

The oncology doctor also came to see me to sign the consent form for treatment.  She explained the side effects again just so that I was absolutely clear about what to expect. 

Hearing the side effects hit me quite hard, even though I'd heard and read about them many times before.  There are three side effects that are certain: hair loss, fatigue and sickness.   They can give you medication for the sickness thankfully.  But there are other possible side effects too.  For example, there may be a risk of blood clots, blood cancer, weakened heart muscles, death from infection and other equally cheerful ones.  In my case, the benefits would outweigh the risks.   

One of the more light hearted side effects apparently is that my pee will go red as one of the chemicals is a strawberry colour.

My stomach was in knots as I signed the consent form to proceed with treatment.  Oh crap.  In for a penny, in for a pound I suppose. 

End of life considerations?

After all the tests and signing the consent form, I had a further session with another nurse.  She was kind and down to earth and spoke very quickly with a Belfast accent that even I couldn't quite follow after nearly 20 years of living here.  She explained that it would still be traumatic losing my hair even though I'd had it cut short and that I would look like the archetypal chemo patient when I looked at myself in the mirror.  

She asked me various questions, one of which was whether I had made any death or end-of-life considerations.  Um, no I hadn't.  Oh heck does that mean I should have?  I suppose I'd better get that Will written after all.

Workboots on

I sat with my husband back in reception and got a bit tearful.  I think the thought of what I'm about to face was starting to hit home.  

I've tried to be really positive so far but I feel like there are many dark days ahead and my positivity is in danger of completely melting away.

This sh*t is about to get real.  Or as Adam Keefe, Head Coach of the Belfast Giants, said to me: #workbootson.

I feel scared.

PS

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