Another eventful few days

My hair has started to fall out.  Not in massive clumps but in more of a moulting dog kind of a way.  I don't really feel too upset about it at the moment as I know that the treatment is actually working.  That has to be a good thing.  I've asked my husband to shave my head this weekend but I might chicken out when I see him with the clippers.  Sweeney Todd comes to mind.

Meditation and the munchies

I went to a meditation and visualisation workshop at the Macmillan Centre the other day.  It was a lovely event run by a beautiful, elegant woman in a lovely floaty dress.  

We did lots of relaxation, hand massages with aromatherapy oils, positive thinking cards, visualisation of blue skies, golden spheres, auras and all that sort of stuff.

It was however a little hard to clear my mind during the morning session. All I could think about was what type of sandwiches we were going to get for lunch. 

Does feeling horrible count as a friend?  Yes, apparently, as it makes you appreciate the good feelings.

Step away from the fizzy sweets

The roof of my mouth has also started to get very sore.  I blame myself though.  I read somewhere that eating fizzy sweets could help with a dry mouth so I went and bought a couple of packets of kola cubes and pear drops.  The sweet but slightly sour taste was heavenly and my tongue was really salivating.  

The only trouble was, I ended up scraping the roof of my mouth with the rough sweets and now it's not healing properly.  I'm having to take a special mouth spray and gel sachets to help prevent my mouth from 'breaking down' and getting ulcers.  The gel is particularly weird.  It needs to be mixed with water, and it feels like I'm rinsing with liquorice flavoured pureed jellyfish.  Not that I've ever tried that, you understand.

The downside of having a sore mouth is that I can't eat anything spicy which includes Indian food, my absolute favourite.  I am gutted.

Not so tai chi

There was an interesting distraction in the tai chi class this week.  As we were exercising, we heard a loud crunch and all dashed to the window to see what had happened.  Two cars had crashed into each other down a side road opposite our class.  A woman appeared to have also tumbled out of one of the cars onto the pavement.  

The incident didn't look too serious but we all gawped and speculated until our teacher nagged us into returning, reluctantly, to our exercise. Luckily there were no punches thrown.  The drivers and bystanders were pretty well behaved too (I bet you saw that joke coming a mile off, eh?). 

PS

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Sunday girl

Today I felt surprisingly good.  I was meant to go to the annual gathering of my husband's family today but I woke this morning feeling a bit wrecked.  So my dear old husband had to go on his own.  I'm also still very nervous of big congregations in close quarters in case I get an infection.  I'm particularly susceptible to one at the moment as I'm in the middle week of my treatment cycle.  That's when the white blood cells have been typically destroyed or reduced.

I did have a bit of, um, 'tummy trouble' this morning though.  I've also been getting a bit of earache in both ears but nothing serious as my temperature has been fine.  I also kept waking up during the night with a really dry cough.  Apparently at 2.00am I shouted out 'OH!!'  It was loud enough to wake my son but clearly not my dead-to-the-world husband lying beside me.

This morning, I washed the floors and made myself a smoothie for cancer patients following a recipe which I found on Pinterest.  It was absolutely delicious but I've just realised that it's meant to serve two people.  I drank it all.  Oops.  

I also put up a magnetic door net on my kitchen door to keep bugs out.  I did it all by myself, and whilst it wasn't difficult, I was quite proud that I didn't have to rely on my husband to do it.

This afternoon, I made pea and ham soup, a quiche, coleslaw, and chicken noodle soup* whilst listening to the charts from this week in 1966, 1976 and 1984.  The music was sublime.  I mean, how can anyone fail to be uplifted up by the Kinks, the Beatles, Thin Lizzy, Frankie Goes to Hollywood and Wham!?  Bloody magic!  I danced and sang along in the kitchen, much to my teenage son's irritation. 

Just a quick word about my son.  He is such a good kid even if I do have to give him a metaphorical boot up the backside every now and again.   He is so resilient and seems to be bearing up really well.  I've been open and honest with him about my treatment but I've kept it really upbeat and positive.  I know he's 'OK' because he still gives me cheek and gets impatient with me.  Sometimes I say something (tongue in cheek) about my treatment and he goes, 'Oh, no, you're playing the 'Cancer Card' again.'   Cheeky monkey.

As I write this blog, my energy levels have started to dip and I'm beginning to feel quite tired.  My husband won't be home for a while so it looks like an evening on the sofa watching an episode of Mad Men is on the cards.  Donald Draper, here I come.

*I'm an idiot.  When I looked at the soup the next day, it was no longer liquid but a whole load of chicken infused noodles.  I looked at the recipe again and realised I should have used cooked noodles not uncooked ones.  I blame chemo brain.

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Ballet-hai

My husband took me see a ballet last night.  It was Giselle at the Grand Opera House in Belfast. 

I love going to see the ballet, although I don't manage to do it very often. The beauty and grace of the dancers and the gorgeous costumes are a sight to behold.  It must be the five year old ballet dancer inside of me (whose mum made her go to lessons every bloody Saturday morning) desperate to put on a pretty frock, get up on stage and perform for the paying masses.  Or perhaps I really just like watching men in tights.

I thought maybe I was being a bit foolhardy going to sit in an auditorium where there would be loads of people sitting up close and personal.  I must admit to having felt a little nervous when people were coughing and sneezing nearby.  I kept my fingers crossed that they just had hay fever and that I wasn't going to get some dreaded infection.

I thought the performance was spectacular but it wasn't my husband's cup of tea.  He suffered for two hours for me, bless him.   

When we left the Opera House at 10pm, it was still light and the streets were buzzing with tourists many of whom were taking photos of the date on the front of the pub across the road.  We sat in the station waiting for our train home along with loads of other people who had also spent an enjoyable night in town.  I just love Belfast.  It's bloody brilliant...and also a little bit bonkers.

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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

C-Day

My first day of chemo.  I put on the warpaint and my lucky pants.  One of my friends who will no doubt read this will know all about lucky pants (you know who you are 😘).  

Before I left the house, I saw that one of my eyebrows that I'd pencilled in was wonky and uneven.  Ah, bugger it.  No-one will notice.

Cancer and coffee

I arrived early with my husband for my appointment in the Bridgewater Suite of Belfast City Hospital and was given the old TGI Friday buzzer. Heck, I needed a coffee first and so made a beeline for the coffee dock. The teas, coffees and biccies are free but they have to be paid for by someone.  That's where the Friends of the Cancer Centre come in as they provide them but have to rely on donations.  Dig deep, folks!  

I plumped for a coffee and, trying to be healthy, I resisted the biscuits.

Waiting, waiting...

Nearly an hour later, I still hadn't been buzzed.  I was getting edgy.  I went and got a book out of the little library within the Suite.  I kept nipping to the loo.  I moved seats.  I went and got a cup of tea.  I asked a nurse if I had missed something but she told me that my treatment hadn't arrived in the Unit.  I knew I was being a 'fuss-arse', as my dear old dad used to call me.

Damn it, I couldn't resist any longer.  I succumbed to a packet of fruit shortcake biscuits.  They must have been magic biscuits 'cos the next minute my buzzer went.  At last!

The Treatment Unit

A lovely nurse greeted me in the Treatment Unit and took me to a chemo bay.  In it were eight comfy chairs with four on each side, with pillows and overhead TVs.  I sat down and waited.  

Now, even cancer patients can get a bit territorial apparently.  It seems that some regular patients have their own favourite chair in the bay.  It's not unknown for dirty looks to be exchanged if someone else takes a favourite seat.  Rumour also has it that some regular patients had worked out that if they sat in the first seat on the left hand side they would get treated first.  This was because they saw that the nurses went round the bay in a clockwise direction.  However one of the nurses told me that she had cottoned on to this and so would go anti-clockwise to keep them on their toes.  How hilarious.  

Even when getting chemo, it seems us cancer patients can still be bloody competitive.

Getting stuck in

I settled down into my chair and then had my blood pressure and oxygen levels checked.  They were fine.  Then another wonderful nurse turned up to do the deed.  She had been reading up on my notes and was getting the treatment all prepared.  

I had a decent vein just above my left wrist which the nurse stuck a thin tube (a cannula) into which she could use to connect the drug filled syringes.  I was hooked up to fluids as well.  I knocked back the steroids and anti-sickness tablet.

So far, so good.

The drugs

As the drugs are extremely toxic, the nurse had to wear protective clothing and plastic safety glasses (which she referred to as her gorgeous Gucci ones).  

The first drug to be injected was the red coloured one called Epirubicin. That's the 'E' in the FECD/FEC-T regime, plus it's the one that makes your pee go red and makes your hair fall out.  Three syringes of the little charmer.  

The nurse injected the first syringe slowly into the cannula, then the second one, then the third.  My forearm started to get a bit chilly so I was handed a heat pack to keep it warm.  Aahh, that was heavenly.

Around came tea, coffee and biscuits.  Ooh, another cup of tea?  Yes please.  And some biscuits too?  Don't mind if I do.  Oh bugger, I needed the loo.  I was going to have to hang on.

After the first three red syringes, I got the other two drugs: Fluorouracil (F) and Cyclophosphamide (C).  Again, they had to be manually injected into me very slowly.  I think the only side effect at the time were some slightly tingling fingers.  No stuffy sinuses or runny nose - another possible side effect - touch wood.

That's it!

The nurse and I chatted about loads of things.  Like all the other NHS staff I have had the pleasure of dealing with, she was brilliant.  After about an hour, it was over and I could go home.  I was unplugged from the various contraptions and given packets of anti-sickness tablets and steroids to take home.  Oh and I must remember to flush the toilet twice.

I went to the loo before I left.  I couldn't resist and looked down into the toilet bowl.  My wee wasn't red, it was orange: the red of my chemo drug and the yellow of my wee had mixed together.  I'd been Tangoed (look it up, kids).

You know what?  The whole experience wasn't too bad.

A bit of nausea

In the early afternoon, I started to feel a little nauseous and rang the Helpline.  They were quite surprised that I felt sick so quickly so suggested that I took an anti-sickness tablet at 6pm.  I haven't taken it 'cos I feel fine right now.  

Fingers crossed for the next 21 days...when I go for my next session.

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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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If you've enjoyed my blog, feel free to follow me on Twitter: @luvvacurry

Prayers and angels

'A radiant sunflower'

One day between appointments, I was walking towards the main hospital from the Macmillan Centre when two women stopped me.  They handed me a leaflet about a religious event taking place in Belfast.

One of the women asked me if there was anyone needing any healing who they could pray for.  Being completely selfish I said, 'What about me?  I'm getting cancer treatment.'  'Yes,' they said, 'Can we pray for you now?'  'What NOW?' I was rather taken by surprise as I wasn't expecting them to do it there and then, but they did. 

They stood either side of me, laid their hands on me and and prayed out loud for me.  I admitted to feeling slightly awkward as people were looking at us as they walked past.  I started to relax a little and allowed the waves of positivity wash all over me.  When they finished one of them said, 'Oh, Karen.  You're like a radiant sunflower.  You've now been healed.' 

I'm not especially religious but I did feel quite chuffed.  

'Go for it'

On another occasion, I dropped in to a Macmillan visualisation and meditation session.  It wasn't quite what I expected but nonetheless it was very calming and relaxing. 

Towards the end of the session, the teacher asked us to choose a card from a pack in the way that a magician does.   She then asked us to read out what was on our card.  

Now I've not been particularly into things like guardian angels, but my card actually struck a chord with me.  It said 'Go for it'.  And I think that's what I'm trying to do on this cancer journey. 

I will take any help (within reason!) from anywhere if it gets me through some of the dark days ahead.

Next time...

Starting chemotherapy.

PS

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Appointments, appointments, appointments

I said in my last blog that I was going to write about, amongst other things, angels and prayers.  I'm going to do that next time as I'm in danger of making this one too long.  But your blogs ARE too long, I hear you cry.  You ain't seen nothing yet.  In the words of Mrs Doyle (I told you I was a Father Ted fan), I can go on and on and on and...

Shut up and get on with it, Karen.

Getting wiggy with it

I went to see the hairdresser at the Macmillan Centre to get ahead (*cough*) of the game and get a wig before my hair fell out.  Ooh, my inner child emerged - so many lovely styles and colours!  I was like a kid in a sweet shop. 

I told the hairdresser I wanted a sassy wig.  I certainly didn't want one that made me look 'mumsy' but I wanted it to be different enough to my own hair so that I could wear it when I fancied a whole new look.  

I tried on all sorts of colours and styles, some of which made me look like my granny (and she's been dead for 50 years).  I narrowed it down to two wigs: a short platinum blonde one and a funkier, slightly longer honey blonde one with *natural* roots.   Ok, so the platinum blonde one was very similar to my own hair but it was gorgeous.

Both myself and the hairdresser were struggling to choose which one to go for as we thought they both looked equally great.  We dithered and ummmed and aaahhhed for ages and simply couldn't decide. 

Then another hairdresser walked into the room.  We both asked her which one she thought looked best.  

'The platinum one makes you look younger,' she said. 

'I'll take it'.  

Flip, how shallow can I be.

You put your left boob in, your left boob out

I was called back for a mammogram on my left boob.  The hospital's Multi Disciplinary Team had wondered if there was thickening in my left breast and I'd also noticed some occasional pain in my left armpit too.  

They took x-rays of slices of my left boob (honestly, it's not as bad as I've made it sound) which when put together would form a better picture.  I've said before that mammograms aren't exactly the nicest experience but nevertheless they are incredibly important.  At least this one was better than my last one where they stuck a wire in my boob.  

Later that day I was given the all clear on that side which was a relief. Phew.  

Every little piece of good news is one step nearer to survival.

50/50

I met the doctor who was going to look after my cancer treatment.  She explained to me that the cancer had been cut out and had now gone. YES!  I mentally punched the air.

The next bit of the conversation with her was quite eye opening.  She recommended that I had chemotherapy and radiotherapy because in my case the benefits (however small) would most likely outweigh the side effects.  

All along I was under the impression that I was going to get treatment come what may.  It was clear that I had a choice though.  If I didn't want treatment then that was fine.  What made my mind up was when the Doctor explained that out of say 100 people (I think that was the number she used), if I decided against treatment I could be in the 50% who got cancer again.  With treatment, the percentage would be much lower.

It was a no brainer.  I was going to become Chemo Karen.

Heart echo, echo, echo, echo...

I had to have an echocardiogram to check that my heart would be able to cope with chemotherapy.  It was a painless ultrasound examination and lasted about 10-15 minutes.  

I lay on the bed next to the screen whilst the cardiologist used the probe to look at my heart from the top, bottom and side.  I was watching on the monitor and then all of a sudden I could clearly see the little valves actually opening and closing.  It was jaw dropping.  

This piece of muscle - the size of my fist - was keeping me alive and if one of those valves suddenly stopped I would be in deep trouble.  I was praying that it didn't do anything funny on screen whilst I was watching.  I really would have had a heart attack.

Watching my heart pumping away was quite sobering.  At that moment, I decided that I would do all I could to look after my heart properly.  All the crap that I've eaten over the years and the lack of exercise made me realise in those 10 minutes that I needed to do more to look after my precious heart.  

There aren't many people who can actually get to 'see' their heart beating in front of them, in black and white.  I found it an incredibly humbling and quite emotional experience.  

Love your heart, people!  💖

PS

Let me know below if there's anything specific about my breast cancer journey you'd like me to blog about.

If you've enjoyed my blog, feel free to follow me on Twitter: @luvvacurry