Wednesday, 20 September 2017

Cancer treatment: week 14

This last week has been a very good week.  A lot of really positive things have been happening.

Although I have been feeling a little under the weather, my taste buds are working well again, my hair has started to grow a bit (at least a quarter of an inch - hmm, where should I part it?) albeit temporarily, my sore PICC line has been sorted and I got a brain scan.  And the best bit of all...I got invited to meet the Belfast Giants.

My sore PICC line 

I mentioned in my last blog about the sore PICC line I had and how I might have something called 'mechanical phlebitis' (see A mini mountain walk and another chemo delay).   Well, I got the line checked out last Friday as things hadn't improved. 

To cut along story short, the infusion services team had a look at it and they concluded that I needed the locking mechanism, which secures the line, removed from inside my arm.  They thought that was what was causing the swelling and pain.  

It was really quite sore when the nurse took the mechanism out.  She then stuck a different locking system (called a 'statlock') onto my skin which the external part of the line was clipped into.  This has helped enormously.  The swelling has subsided and the pain has gone.  What a relief.

My brain scan

I had my appointment for my brain scan to see if I had done any damage after I knocked myself out last month (see Games without Frontiers). Yes, I do have a brain, folks.  I must admit it doesn't work as well as it used to.  I blame the chemo.  'Chemo-brain' is a well known phenomenon amongst cancer patients.

I won't bore you with the details of the scan but this is the third CT scan I've had since diagnosis and I'm getting a bit blasĂ© about them now. They don't scare me at all.  Suffice to say that I had the contrast dye injected into me, lay on the couch where the big doughnut went over my head, and I didn't swear once.   I was in and out in a jiffy.

Meeting the Belfast Giants

Anyone who knows me or has been following my blogs knows that I'm an avid fan of the Belfast Giants ice hockey team.  Now without wishing to bore the pants of anyone who couldn't care less about them or indeed [ice] hockey in general, I've written a specific piece about how I got invited to meet them and what happened when I did.  If you're interested, go to The day I met the Belfast Giants.

Chemo's back on track

My blood results have improved - not hugely but sufficiently - so I was able to get chemo this week.  

I got the new drug (Paclitaxel) yesterday.  So far it has been far gentler on me than the horrible docetaxel which they have now stopped giving me.  

Before I got the drug, I was given steroids and an infusion of anti-histamine to prevent any allergic reaction.  It made me very sleepy and I pretty much slept through the next hour and a half of the treatment.   When I woke up all the other patients had gone and I was the only one left.

I'm also not going to be on steroids as long with this new drug.   Which is nice.  I will however need to get three days of injections to stimulate my white blood cells.  Not so nice.

I'll keep you posted on how this new drug affects me.  Fingers crossed it will be much less harsh.


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Tuesday, 12 September 2017

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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Tuesday, 5 September 2017

Change to my chemo regime

I went to my pre-assessment this morning where they took my bloods and weighed me.  Phew, my weight has stabilised.

I saw an oncologist (I seem to see a different one every time) and told her about my two trips to A&E, including the blood clot in my lung.  Her face was a picture and she kept telling me that I was 'very lucky' and that I must have a good heart and lungs.  I didn't like to ask how lucky, or if I was lucky because I hadn't actually died.   Sometimes it's best not to ask a question you don't really want to know the answer to.

Brain scan

The oncologist is also going to arrange for me to have a brain scan. This is to see whether there was any damage from when I knocked myself out a few weeks ago (see Games Without Frontiers), not to see if I do indeed have a brain.  Many folk do wonder about that.

You know what?  My body will have been checked out thoroughly as a result of having had cancer and going through treatment.  That's got to be a good thing.

Change of drug

Because of the side effects from the docetaxel, I am now going to be switched to weekly chemotherapy on a drug that will seemingly be less harsh on me but just as good.  It's called paclitaxel.  I'll be getting weekly infusions for the next six weeks.  They are also going to try to merge my day for pre-assessment with my chemo day so that I don't have to go two days in a row to the City Hospital.   That will save me making an extra round trip every week and I won't have to hang around for two consecutive days.   Every cloud and all that.

Blood thinning injections

As for the blood thinning injections the oncologist reckons I'm going to be on them every day for six months.  Six months!  My stomach is already starting to look like I've done ten rounds with Floyd Mayweather (he's a boxer, right?).

PICC line

I also got my PICC line put back in today.  I won't tell you exactly what one of my friends with cancer calls the line, but let's just say it rhymes with PICC as in 'PICC the ****'.  She really makes me laugh and is an absolute tonic.  

The nurse who put the line back in jokingly called me a 'sensitive critter' when she did it to me last time (see Second chemo and its aftermath). So I got my own back and took the opportunity to rib her mercilessly today.  Boy, we had some craic.

There was another nurse in with us and we started to talk about holidays and travel when all of a sudden I felt a sharp stab in my left arm.  The nurse had taken the opportunity when I was distracted to inject the local anaesthetic into me.  'Hey, you didn't warn me!' I said.  'Yep, I knew you'd be distracted by talking, you sensitive critter.'  Cheeky.

Sad songs

There was one incident whilst I was waiting between sessions that did upset me a little.  I went into the ladies loo and could hear gentle singing coming from one of the cubicles.  A young woman then emerged, with red rimmed eyes, and apologised to me.  I told her not to worry as it sounded lovely.  'I sing because it's the only thing that stops me from crying,' she said.  I didn't want to pry but she explained that she had been on chemo and radiotherapy.  

My heart just went out to the woman.  I wasn't sure what to say so did my best to reassure her, probably not very successfully.   I felt so sad. 

A week's chemo holiday

This afternoon after I got home, the hospital rang me to say that my white blood cells were far too low to proceed with my pre-planned chemo the next day.  It would be too risky and so they needed to defer my chemo for a week.  Heck.  

On the plus side I am now getting a week off chemo/side effects, my taste buds will hopefully improve further - and most importantly - I should feel well enough to go the Belfast Giants first home league game of the season on Saturday after all.  Get in!


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Sunday, 3 September 2017

What a bloody clot

I now have a blood clot in my right lung.  

How did I find out?  Well, my chest and upper back had felt a bit tight for a couple of days, almost like I was coming down with a chest cold or something similar.   I had just started to learn to knit (I'm turning into my mum) so I thought it was just a bit of stiffness from the way I'd been sitting.

The pain had eased for a couple of days but then I woke up on Tuesday and the tightness was back.  When I stood up, I could feel my chest throbbing a bit and then I noticed a rash on my upper chest.  Oh shit.


I rang the Oncology Helpline who went through a checklist with me and then said that I would have to go to A&E.  'You're kidding,' I said.  'No, you have to go.  There could be something happening with your heart and they'll need to check it out.'  Heck, not again.  I'd only been there just over a week before (see Games Without Frontiers).  I could see myself getting a season ticket and the nurses/doctors saying, 'oh hi, Karen, welcome back.  Make yourself at home.'

I arrived at the A&E reception and, again luckily as a chemo patient, I was taken in fairly quickly and sat in a cubicle.  My blood was tested a couple of times, I had an ECG followed by a chest X-ray.  The lovely doctor who was looking after me asked me loads of questions, what drugs I was on etc.  She identified that a blood marker for my heart was slightly elevated, plus a marker for clotting was high.  'I think you may have a blood clot so I want you to have a CT scan'.  Ah, not good.

Off I trotted to the CT scanner department.  I had the contrast injected into me and got that weird sensation again of feeling like I had wet myself.   This time I knew what to expect and so thankfully didn't shout out 'F*ck me' like last time (see View from the bra: the CT scan).


It was nearly 4.00pm and I was getting hungry as I'd only eaten a banana and a slice of toast in the morning and had been in A&E since 10.00am.  I asked the doctor if I could go to the vending machine to get something to eat.  'I can make you some toast if you like.  We have loads of toast here and you have been very patient.'  I nearly snatched her hand off.   When I came back from the CT scan she brought me two slices of hot buttered toast.  It was delicious.  What is it about toast in hospitals that makes it so special?

The results

About 6pm the doctor came back with the results of the scan.  'Yes, you have a blood clot in your right lung'.  'Oh shit,' I went.  She said, 'it's treatable though and we've calculated the level of risk and it's low.  We'll send you home with injections of blood thinner and you'll have to report to the Anti-coagulation clinic.'  I didn't even know such a clinic existed. 

My daily injection

The doctor gave me a leaflet confirming that I had a pulmonary embolism but she suggested I didn't alarm myself by reading the really horrible part as I wasn't a high risk case.

A blood clot is one of the risks of chemotherapy.  It seems that the blood thinner won't cure the blood clot but will help keep me safe.  Apparently my body has to absorb the clot naturally.  I might be on these bloody injections for months but my Oncologist will let me know more when I see her next week.

So that was my second trip to A&E during the same chemo cycle.  They say things always come in threes.   Please, no!  I'll try to be a good girl, honest.


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