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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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

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

Taking control

Once you're diagnosed with cancer, your life feels like it's not your own and you're at the beck and call of others.  Even your body is trying to kill you.  You're swept up in what seems like a never ending series of appointments, tests, surgery, treatment etc. 

When I was diagnosed, I felt like I was spiralling out of control.  My lovely, happy life had been knocked sideways and things like work and planning for holidays had to go on ice.  That was totally alien to me.  It was a bewildering time and I felt like I was being bombarded with information from all sides that I just couldn't take in.

Take control of the bits you can

One piece of advice I found really invaluable was from another cancer patient.  She told me to treat my cancer journey like a project and break it down into various component parts.  I thought that was a really good way of looking at it.  

In simple terms, that means the experts do what I can't do, and I do what the experts can't (or don't need) to do.  For example:

• I knew I was going to lose my hair and couldn't bear the thought of seeing it come out in handfuls or on my pillow in the morning, so I got it cut.  
• I've also wanted to increase my fitness before treatment, so as I wrote about in my last blog I've taken up various activities.  
• I've made up my own little first aid kit which I have with me all the time in case I get a cut or insect bite on my right arm. 
• I put all my appointments and reminders into my phone so that I can keep track of what's happening when.

hair today...

going...

almost gone

I also started to take a tonic (not the type that goes with gin, unfortunately) from a health food shop which was recommended to me. It was meant to help boost my immunity before and during treatment.  I have to say, even drinking it with apple juice, it was the most disgusting thing I've ever tasted in my life.  I had to hold my nose as I drank it.  Ugh, what was the point of drinking something I wasn't enjoying.  I stopped taking it, believing that I would rather take my chances with the side effects of chemo.

Taking control of even the smallest things can make a real difference to how you feel.  I personally think my physical healing, my mental wellbeing and my social life have improved no end. 

Look good feel better

I want to briefly mention a workshop whose aim is to help women combat the visible side effects of cancer treatment.   

Again, for me, it was all about taking back some control.  If chemo was going to make me lose my hair, eyebrows, eyelashes and make me look rough, I was going to do all I could to disguise the effects and make me feel better when I looked in the mirror.  

At the workshop there were about 20 women at various stages of cancer treatment.  It was run by a larger than life, funny, charismatic woman. She talked us through how to remove our make-up, moisturise properly, and apply our make up correctly.  I realised that I've been doing it wrong all these years!

It was a real hands on session.  Each of us was given our own goodie bag of beauty products that we actually used during the workshop and could keep.  

If you're a woman with cancer, I would encourage you to go.  It's brilliant and uplifting. 

You are not alone

If you have cancer, you are not alone on your journey.  There are lots of cancer charities who do tremendous work and are there to help and provide practical support if you need it.   

At the beginning, the information I was given about my cancer and all the support networks was mind boggling.  I just didn't know where to start and my mind couldn't make sense of, or sift through, the mounds of information.  But slowly and surely, through talking to the Macmillan Centre at the Belfast City Hospital and other cancer patients, I am learning more and more about the range of help and support that's available.  

I may or may not decide to take up all the support that's on offer, but I'm fine with that.  What's important is I know where to go if I need help and again, I'm taking control of all the bits that I can.

Next time

A mammogram, oncology, angels, prayers and a heart echo.

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

Getting out and about

Research says that physical activity has great benefits, both during and after cancer treatment.  The advice I've been given is to try to do about 150 minutes of physical activity a week.  Now, as I've probably only ever done about 150 seconds of physical activity a week before I was diagnosed, I thought I'd better get off my backside.  

Tai Chi

The first thing I did was to join a Tai Chi class sponsored by Macmillan Cancer Support.  It's a graceful and spiritual form of exercise which I've discovered, much to my surprise, requires more control over muscles and a greater degree of co-ordination than I ever expected.  

At my first class, I quickly realised that an elephant on a pogo stick would have had a better chance of getting to grips with Tai Chi that first night than I did.  But I'm sticking at it and I'm in a group of people who make me feel welcome.  It really is a lovely activity and I come away from it with an inner warmth, a calmer mind and a feeling of mutual support.

Move More

I've also met up with a fantastic Macmillan 'Move More' co-ordinator who has worked with me to understand my level of activity both pre- and post-diagnosis.  She has helped me set goals to increase my activity levels.  Even gardening counts as a physical activity.  

I'm now starting to plant vegetable seeds for the first time in my life.  If someone had told me 20 years ago I would be growing my own vegetables, I would have laughed out loud.  And trust me, I have a really loud laugh.

I also now go to a weekly Move More class for people living with cancer and cancer survivors.  It's a little bit like circuit training but is very much geared towards the attendees' needs.  The people who go are really friendly and chatty.  We laugh and joke but we knuckle down to the exercises.  There was one woman there who, whilst we jogged, told me she had incurable cancer but wanted to do something to help tackle her fatigue.  She was a stunning looking woman.  I am rarely lost for words but on that occasion I was.  I just didn't know what to say that didn't sound naff.  Her story touched me deeply.  

'There but for the grace of God...' and all that.

Coffee and Chat

I went to my first Coffee and Chat session organised by Action Cancer at the Macmillan Centre. I met cancer mentors who talked to me about their experiences and who gave me lots of tips, for example moisturising my feet to reduce the risk of ulcers during chemotherapy (I don't know if this is true yet as at time of writing I haven't started chemo).  

Cancer mentors are really positive, inspirational people.  They've been there, done that, got the T-shirt.  They listen to you and give you practical advice but more importantly they give you hope.

Wednesday Walks

Something else I've started to do is to take part in 'Wednesday Walks' organised by Connswater Community Greenway.  I've discovered areas of East Belfast I knew nothing about.  For example, the first walk took us to a place called The Hollow (see pic) made famous in the song 'Brown Eyed Girl' by Belfast's own Van Morrison. 

The Hollow, East Belfast

 The Great One

I met a lovely former Canadian resident on one of the walks.

We talked about ice hockey which is my favourite sport to watch.  She told me that her husband had once taken her many years ago to see the Toronto Maple Leafs (go Leafs!) play at the famed Maple Leaf Gardens.  Wayne Gretzky - the Great One - was playing in the game.  I was about to bow down and say 'I'm not worthy' when she said something that astounded me: she read a book throughout the whole game.

Wayne Gretzky.  WAYNE GRETZKY.  The greatest ice hockey player that ever graced the game.  And she didn't bloody watch him!  

Next time...

Taking control (and no, it's not about Brexit).

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