Week 15 of cancer treatment

I've been feeling very emotional today.  I've no idea why.  I've been close to tears and could cry at the drop of a hat.  On the other hand, I feel quite anxious and aggressive, like I want to fight someone.  I reckon it's the drugs but I haven't felt like this before on chemo so perhaps it's nothing to do with them.

I've had my second dose of Paclitaxel this week.  The side effects (except possibly those described above) have not been that noticeable. I've almost felt human.  I still have some effects from the previous drug, for example I've had sheets of skin peeling off from the soles of my feet, gained a few black toenails, and many of my fingernails are now either badly ridged or are lifting off the nail bed.  At least I won't need make up for Halloween.

I've also been able to inject the white blood cell stimulant over two consecutive days by myself.  I've had a few aches and pains as a result (quite common apparently) but generally I've not felt too bad.  It's such a relief to not feel crap all the time.

Radiotherapy - clinical trial dilemma

When I went to see my oncologist, she invited me to take part in a clinical trial for radiotherapy called FAST-Forward.  I meet the criteria apparently.  

The current regime for breast cancer is daily radiotherapy for three weeks (except weekends).  The trial is to test whether this can be reduced to five days.  I've been given a patient sheet about the trial, which includes information about known pros and cons, and have access to a researcher to ask questions before taking a decision.  

When I started off on my cancer journey I secretly wanted the opportunity to take part in a trial.  However I was led to believe by someone I met that if you took part in a trial it was because nothing else had worked.  Not so, apparently!

I really think trials are important but my son doesn't want me to do it.  He wants to be sure that I get the best chance of success and that would be through sticking to the current protocol.  I have no idea what to do.  If women hadn't volunteered for trials in the past I probably wouldn't be lucky enough to get my current treatment regime.  

I have my radiotherapy planning appointment this week (on my bloody birthday too!) and I'm going to grill the research team about what taking part might mean for me.

Macmillan Coffee Morning

The Move More group I belong to held a coffee morning last week as part of Macmillan's 'World's Biggest Coffee Morning' to raise funds.  I even made a simple banana cake for it and helped out as a volunteer. 

The amount of goodies on offer that were made/donated/bought was incredible.  I couldn't resist some of the cakes myself, particularly the rainbow cake in the picture below.  I reckon if cancer doesn't kill me, diabetes might.

We did brilliantly and raised over £800 in the space of an hour and a half.   We also had great fun doing it as well.

Some of the yummy cakes

Me (right) and my friend Sharon (aka the 'Kaz n Shaz comedy duo' 😄)

Onwards and upwards!

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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.

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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

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