A mini mountain walk and another chemo delay

Every day on a cancer journey brings something new.  Take this week, for example.  I did a mini walk up a mountain, I was tested for another blood clot and chemo was deferred, again.

Divis mountain walk

The Macmillan Move More group I go to met up with other groups across Northern Ireland last Friday for a walk up Divis Mountain.   

This is how the conversation (the bit suitable for public consumption) went with my husband before I left home that morning:

Husband: Karen, it's not a route march, just take it easy.  I know what you're like.  It's not a race.  If you get out of breath, then stop.

Me: Yes, I promise I'll take it easy.  I'll walk slowly.

Husband (clearly believing I'm not listening): It's not a route march, just take it easy.  It's not a race.  And if you get out of breath, then stop. 

Me (through gritted teeth): YES.  I.  KNOW.  

Husband (still not believing I'm listening): Just take it easy. I know what you're like. It's not a route march.

...and so on.  You get the drift.

Oh, I also found £20 in my walking trousers too.  Wey hey!

Off we go

We all arrived at the mountain car park.  It is a very exposed area and the wind was whipping around us.  I had a bandana and a Winnipeg Jets [Canadian ice hockey team] baseball cap on my head but didn't have a scarf on and my neck was freezing.  One of my friends on the walk very helpfully suggested that I unwrapped my bandana and let it hang loose under my cap thereby protecting my ears and neck.  I looked like a choice of a) Lawrence of Arabia or b) Deputy Dawg (look both of those up, kids).  We nearly wet ourselves laughing so much.  I refuse, by the way, to put up a photo of what I looked like as it was pretty horrific and I might scare young readers.  

There were two walks to choose from: a short one and a long one.  The short walk was just to the coffee shop about 20 minutes up the path and the longer walk was another 20 minutes further.  

After a group photo, we set off.   With my husband's words still ringing in my ears, I plumped for the short walk even though I reckoned I could push it a little further but I didn't want to tempt fate.  

The coffee shop (circled)

After some deliciously warming drinks at the Divis Coffee Barn, we then walked back down again to the car park where Macmillan had laid on sandwiches, soup, tea and coffee for us.

Macmillan's soup and sandwiches

It was a brilliant event.  There were about 100 people there and I met so many wonderful, inspirational folk who are going through their own personal cancer journey.  It was an uplifting experience.  

I honestly did take it easy and I made it back in one piece.

Chemo deferred...again

I woke up this morning with some blood pooling around the entry point of my PICC line, with some painful swelling in the area.  Oh, heck.  Not good.  

Anyway, I went along to my pre-assessment this morning and told them about the pain and swelling.  After much taking of blood, prodding and inspection of my arm by nurses, sisters, doctors etc, the oncologist broke the news that it could be another blood clot and that chemo couldn't go ahead until she was sure what she was dealing with.  I would need an ultrasound scan of my arm.  

I was so cheesed off as I had psyched myself up for chemo and was worried another delay could have repercussions for the success of the treatment (not so apparently).  Whilst waiting for confirmation of the ultrasound appointment, I cheered myself up by reading a book by Alan Partridge in the waiting area.  I'm sure people thought I was a bit odd as I kept laughing out loud (I forgot to be quiet).  

I also replied to a tweet by Paris Hilton where she had asked her followers, 'What's on your mind?'.  Despite not being one of her followers, I tweeted back, 'The pedestrianisation of Norwich city centre.' Top Partridge banter.

The ultrasound

I went home and then came back for the ultrasound.   It was carried out by a doctor who looked about 12 years old but boy did he know his stuff. He explained everything he was doing and what he could see on the screen.  It was fascinating.  I kept asking him what various things were on the screen like some irritating big kid.  Bless him, he had the patience of a saint.

The doctor took screen shots of my veins and arteries in their 'normal' position and also when he had compressed them with the ultrasound device.  If a vein compresses, then apparently that's quite a good sign because that suggests there's no clot there. 

It bloody hurt when he had to compress the painful bit in my arm.  He also showed me my jugular veins (massive) and carotid artery (less massive) in my neck.  It was like looking into a secret world.

The results

Phew.  No clot.  The most likely diagnosis is that I have something called 'mechanical phlebitis' which is a sort of irritation caused by the PICC line. Treatment is just some brufen to settle the inflammation.  I won't be able to have chemo until my next planned appointment on Tuesday, so I'm really hoping that nothing else happens in the meantime.

So there you have it.  Another week of the unexpected.   There's never a dull moment when you're dealing with cancer, that's for sure.

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

My breast cancer diagnosis

I must confess it sounds weird to write the words 'breast cancer'.  Breast Cancer.  Eurgh.  I have a 'bad boob' -  that sounds better!

Firstly a bit about me.  My name is Karen, I'm almost 55 years old, married, with a teenage son.  I'm English but I've lived near Belfast, Northern Ireland for nearly 20 years.  I've always been a bit work obsessed, I can't sit still for very long and get easily bored.

I always thought I was invincible.  I've never had much sick leave in the 36 years I've been working, nor I have I ever had any serious illnesses or incidents (touch wood, unless you count the time I nearly went head first into the Ennistymon Falls, Co Clare, Ireland but that's another story) and I probably rather naively never ever thought I would.  Ha!  How wrong could I be.

Before you start reading on, here's a bit of a heads up. I might use the occasional bad word.  Sorry about that but I want to write as a I speak and be true to the person I am.  I've also tried to be positive and avoid lighthearted as far as possible, despite the serious nature of the subject.

Finding a lump

How and when did I know I first had breast cancer?  I found a firm swelling in my right armpit.  I don't even know how I found it.  It wasn't through my regular mammograms, nor any self checking as, much to my shame, I was always pretty bad at that.  

I found the lump by accident and could only feel it when I was lying down or when I raised my arm above my head.  I thought maybe I had, rather laughingly, built up a super strong armpit muscle due to regular physiotherapy exercises I had been doing for impingement in my right shoulder.

I left it for a couple of weeks to see if the lump would disappear.  But it didn't.

The GP appointment

I went to see the GP, who looked like a 12 year old. She asked me if I had lost any weight to which I replied 'No, I wish I flaming well could'. She asked me about my appetite, to which I replied 'I eat like a horse'.  The GP examined me, did a blood test and then said she would refer me to the hospital for a possible ultrasound.  Alarm bells started to ring.  

When I left the surgery I read her referral in which she described me as a 'pleasant 54 year old lady'.  Blimey!  That made me feel like a dead old fuddy-duddy.  She also mentioned that the lump was 'tethered'.   Back home looking at Google (yes I know, it's the wrong thing to do when you're worried about something), I discovered that a lump that stays in a fixed place isn't usually a good sign.  Oh heck.

I decided not to wait for an NHS appointment which I was told could take a while to come through (wrongly as it turned out), so with the help of the wonderful Benenden Healthcare Society I got an appointment the following week to see a consultant privately.  I was told I would definitely find out at the consultation if I had breast cancer or not.  Bitter sweet, eh?

The consultation

On the evening of the consultation, I sat in the waiting room with other women, many of whom were wearing headscarves.  Please god, I don't want to end up like that, I said to myself.  One overly chatty woman with a headscarf sat right next to me and started to talk to me about breast cancer, how great the consultant I was seeing was and the treatment she was going through etc.  All I could think of was 'Shut the f*ck up!  I don't know that I have cancer and you're not bloody helping!'.

To cut a long story short, following an immediate mammogram, an ultrasound and a core biopsy (during which I yelped in surprise and went 'oh shit!') the consultant told me that as well as the lump in my armpit she had also found a small lump in my right breast which, as she put it, was rather 'worrying'.  I looked right into her eyes and I asked her outright if was cancer.  She said 'Yes, I'm afraid it is'.  I cried, she held my hand and she was lovely.

The breast care nurse then joined us and they called my husband in.  He gripped my hand so tightly as he listened to the words…'there are signs of cancer cells in Karen's breast…have spread to her lymph nodes'.  I felt like I was in a fog of despair and disbelief as they told him.  I felt completely well and healthy - how could I have cancer?  It was like a bad dream.  Surreal, almost. 

The date was 3 April 2017.  I'll never forget that date as long as I live.  There were many tears in our house over the next few days.

Waiting for the biopsy results

A week later, I had to go back to get the biopsy results.

Allow me to digress a little here.  It was a strange time between the biopsy and getting the results, almost like a state of limbo and suspended animation.  We all cried quite a lot during that week.  My mind was working overtime and I still couldn't believe that I had breast cancer and how it was all a terrible mistake as I felt so well and healthy.

Telling people

I was dreading breaking the news to my son.  My husband and I had already agreed that we wouldn't tell him until we knew what the results were and had a positive plan of action to tackle the cancer.  I'd got advice from various cancer support groups about how to break the news to teenagers but it was still unbelievably hard.  The look on my son's face will stay with me forever.

I sent a simultaneous Facebook message to my brothers and sister as I knew if I told one of them first the others would quite possibly get the hump.  My sister later rang me and her first words were, 'Where the f*ck did you get that from?!'.  She always makes me laugh.

My work colleagues were amazing too.  I had to email them because they're based all over the UK.  My phone never stopped ringing and emails kept popping into my inbox with people wishing me well, offering support, sharing their own personal experiences and generally being fantastic.

It's a times like this you realise how wonderful and supportive people can be.

A woman with cancer

I often looked at myself in the mirror and would see my usual face staring back. That's what a woman with cancer looks like, I thought. I looked normal, not ill.  But over the next few days, I somehow slowly started to get my head together a bit more.  I even managed to sort out a load of old personal documents which I'd put off doing for years.  Yet my mind could only focus on one thing.  Even fish and chips and Ben and Jerry's ice cream on the seafront that Friday night didn't help, and that's saying something.

Aches and pains: did that mean…?

I also couldn't help but worry myself sick about every ache and pain I had as I thought that meant the cancer had spread and that I would die. It's amazing how your mind goes into overdrive.  I kept imagining that I wouldn't be around to see my son go to university, to see him get married and then become a father to my first grandchild.  I had to know for sure what I was facing and I was desperate to know as quickly as possible.  I now know that I didn't know enough to know that it was too soon to know all of that!

The results

I waited nervously to be called in to find out what I thought would be my fate.  When I went in, the consultant explained that my breast cancer was the most common type: invasive ductal carcinoma.  It was grade II, oestrogen positive and was treatable, she said.  Phew!  I would however need what's called a wide local excision, lymph node clearance, possibly supplemented by chemotherapy and/or radiotherapy, hormone therapy to fight the oestrogen and CT/bone scans for completeness.  Oh god I thought, what if the scans tell me it's spread?

Ah well, if it turns out the b****rd has spread, I told myself, I would handle it and would enjoy every moment of my life from now on.

Next time...

I'll tell you more about having my CT and bone scans. Now they were very interesting!

PS:

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

Please also consider donating money to my step-daughter, Fiona Dougan, who is running a half marathon in September 2017 to raise money for Macmillan Cancer Support.

Sponsor Fiona Dougan to help raise money for Macmillan