Mrs Angry

I've been feeling strange of late.  It's coming up to Christmas and even though my chemotherapy and radiotherapy is now over and my tree is up, I don't feel very Christmassy at all.  I want to feel euphoric, I want to embrace this time of year like never before, I want to cherish every moment, I want to look at the lights on the tree and and be excited.  But I don't feel any of that.  I feel empty.  I feel down.  And that makes me feel both guilty and angry.   

I know I should be grateful to be cancer free.  I could've been in a far worse position this Christmas than I actually am.  Anyone who is still living with cancer and may not be looking forward to Christmas or the year ahead, my heart goes out to you.  

I'm now feeling angry that I got cancer in the first place. I'm angry that the disease could rear its ugly head again at ANY time in the future.  I'm angry that cancer is clever and cunning and smart and nasty and evil.  

I don't think I'm enjoying life as much as I thought I would be post-cancer.  I'm not doing all the mad things that I said I would do after treatment was over, or even actively planning to do them.  I'm not laughing as much or as loudly as I used to (many people may be relieved to hear that).  My husband has said to me that I'm not as bubbly as I used to be.  I'm not waking up and feeling blessed that I'm still alive.  

Perhaps it's the hormone therapy (Anastrozole) that's making me feel this way.  I have bone pain and am tired a lot of the time.  It could also be because I'm no longer in the precious cocoon of treatment and forensic care and I don't have that reassuring safety net.  

I understand from speaking to people that what I'm feeling is not unheard of and is quite 'normal'.  That doesn't reassure me or make me feel any better.

I feel guilty that I feel this way.  I just can't get my head around any of this.  I am sure it will get better.  I really hope it will.

Anyway, time for me to shut up and not to be so self-pitying!  Thank you for reading my blogs.  I really do appreciate it.   

I do hope that you all have an enjoyable Christmas/holiday and a happy (or happier) 2018.  And if you're going through a tough time, hold your head up and keep going.  Easier said than done, but as an inspirational woman with advanced cancer recently said to me, "Some of us are brave. All of us are strong."  Too bloody right.

Much love, Karen.

Getting radiotherapy

Two weeks after I finished chemo I started my radiotherapy trial (see 'Week 15 of cancer treatment').

When I arrived at the hospital, I was feeling both nervous yet excited.  I'd never had radiotherapy before and despite many people telling me it would be a doddle compared to chemo, I still had my neighbours' comments from six months ago ringing in my ears ('Oh, radiotherapy is awfully hard. So-and-so had a TERRIBLE time with it'.  Cheers, dear neighbours).  It was also going to be another significant milestone on my cancer journey.

Photographs

After I arrived at the Cancer Centre, I met one of the clinical researchers who took me to get my bloods taken, asked me to fill in a questionnaire and then took me to get my boobs photographed.  I already knew that was going to happen as I had signed up to it as part of the trial.  By taking photographs years apart, the trial team can see how the treatment affects my boobs over the years.

Now, when the researcher said they wanted to take some photographs I expected a nurse with a camera phone in a hall cupboard somewhere. Er, no.  The researcher took me down a series of corridors and when she finally opened the door to the room, I nearly died.  It was a full photographers studio with a backdrop and two massive super trouper studio lights.  It felt like I was going to do some sort of glamour modelling shot (not that I know what that's like, honestly).

'Oh. My. God. I can't do THIS!!' I spluttered.

'Yes you can, Karen,' the female photographer said.  'Just drop your cape, stand there, put your hands on your hips, then above your head and work it!'

Oh well, in for a penny, in for a pound I suppose.  That's all I'm sharing with you.

Once it was done, the photographer said she'd see me in two years and then both her and the researcher shared recipes with me about how to cook special Christmas gammons.  As I may have mentioned before, I've never been bored on this cancer journey.  I've learned a hell of a lot about all sorts of things, not least how to improve my culinary repertoire (sounds posh, dunnit?).

The radiotherapy treatment

The radiotherapy waiting area was packed with people.  There was an in-house guitarist playing gentle, soothing music.  I looked around and watched the faces of the people waiting and wondered what their stories were and how they were feeling right at that moment.  Were they scared?  Were they hopeful?  Were they resigned to their fate?  I realised it wasn't helpful to think about things like that so gave myself a sharp talking to.

The radiotherapy itself was actually pretty uneventful.  I had to lie absolutely still on a bed below the radiotherapy machine whilst they set me up to match the measurements and tattoos that had previously been done at my planning session. 

There were lots of green laser lights (to help with the targeting of the radiotherapy beam), much whirring and buzzing and 'radiation on' signs turning red.  The radiographers kept nipping in and out to check measurements, making adjustments and programming the machine for the next bit of zapping.  They kept me updated and then would disappear into their lead lined room whilst I got zapped.

It was totally painless and is incredibly precise.  The only tricky bit was having to stay absolutely still so that the beam wouldn't go off target.  I kept sensing all these itches on my face (some real and some no doubt a figment of my imagination) which I was desperate to scratch but I knew I couldn't move a muscle. 

The radiographer gave me some special cream to slather on myself twice a day to keep my skin moisturised.  'Put it on the back of your shoulders too as the beam has to come out somewhere,' she said. Gulp.

I went back for four more sessions and then, a week later, I was finished. On my final day, I rang the bell in reception three times which signalled the end of my treatment.  Everyone clapped.  It was a wonderful moment.  I walked out of the hospital with a spring in my step.

Ringing the bell

What next?

I was able to meet the head of the clinical trial who was a lovely, charming man.  He thanked me for taking part and told me that I would be invited to come back in about three months time to see how I was and also to take me off anti-coagulation medication.   Other than that, I would be called for a mammogram around 12 months after surgery but that if I had any concerns in the meantime I could get in touch with the hospital straight away.

It's not the end

This isn't the end of my blog by the way.  

I've just started hormone therapy - a daily drug called Anastrozole - which I will take for the next five years.  There are a number of side effects with this drug which won't be very enjoyable (the worst menopausal side effects you can possibly think of) but you know what? It's better than the alternative.

I still have to go back to work and the thought of cancer recurring will never leave me.  These will be subjects I shall be writing about at some point.

Thank you for reading my blog.  Your company and comments have been truly wonderful.

Onwards and upwards!

Much love.

Karen
x

My final chemo

The day had come for my tenth and final chemo.  It was 24 October 2017,  a full 19 weeks since my very first infusion.

When I woke up, my stomach and mind were churning with a mix of emotions: I was happy and excited but a little apprehensive as I knew the regular therapy sessions (in more ways than one) would be coming to an end.  I was about to be set free from chemo, which despite being a quite horrible treatment, was actively keeping me alive.  I was beginning to feel quite vulnerable again. 

Things started off well when I went and had my pre-assessment that morning.  The nurse was able to get blood out of my PICC line to do my blood tests which meant that it was working OK.  I breathed a sigh of relief, especially as the day before the line had not played ball with the District Nurse.  It also meant that I could at last get my PICC line completely removed after the chemo.  The thought of being able to have a big, deep bubble bath again was so enticing.  No more pulling stupid shapes to try to keep my dressing dry.

Chemo time

I came back later that afternoon to get my chemo and brought in a big tub of chocolates as a thank you gift for the nurses.  I chatted to the chemo patient in the chair next to mine and started to feel myself tear up at the thought of this stage of my journey coming to an end.

Whilst I was waiting, the oncologist came to see me and said that my blood test that morning had showed that my red blood cells were low and that I needed to come back on Friday to have them tested again.  If my red cells were still low, she said, I might need a blood transfusion.  WHAT?!  

My chemo was thwarted at the 11th hour.  The nurse couldn't get blood out of my PICC line.  I was gutted.  It had worked fine that morning.  By now it was about 4 pm and it was too late for the nurse to give me a clot buster - it needed at least an hour to work and then I would need a further two to three hours for the chemo.  By then the Treatment Unit would be closed.  

I was given a choice:

a) get another x-ray, a clot buster and come back the next day, or 

b) get chemo through a peripheral vein (a vein that's not in the chest or abdomen).

I was under pressure to make a decision as it was getting late in the day.  Oh shit.  SHIT!!  What should I do?

I didn't know what to do and started to feel a wave of panic wash over me.  I wanted to get it over with as I'd built myself up, but the thought of getting chemo through a cannula and a peripheral vein was not an attractive option.

'I'll go peripheral.'

'Are you sure?' said the nurse.

I looked over at the patient next to me for moral support. Her eyes showed a tiny element of doubt.

'No.  I'll come back tomorrow!' I blurted out.

As soon as I'd said it, I knew I'd made the right decision.  I felt a sense of relief.  There was no point in rushing the final chemo and knackering another vein for the sake of a few more hours.

I went home and on the way, I thought sod it, I'm going to have a chinese takeaway.  When I got home I realised I'd been walking around the hospital all day with only one eyebrow.  I'd clearly rubbed one of them out by accident.

Sleep was elusive that night. 

The next day

I returned the next day at 9.00am, hoping that the PICC line would deliver its required dose of blood before I could get the treatment.

It did.  It was all systems go.  As usual, I fell asleep during the infusion, woke up in time for a cup of tea and by 11.30am it was over.  

Getting ready to start chemo

As I left the chemo bay, I gave each of the nurses who had treated me over the last number of months a big hug.  I got quite emotional.   'No offence, but I hope I never see any of you again!' I said through the tears.

Chemo's done

I walked out of the hospital into bright, autumnal sunshine.  It felt bloody brilliant. 

The nurses

I can't write this blog without saying something about the chemo/clinic nurses.  They are amongst the most charming, warm, funny, patient and caring people I have EVER met in my life.  They make the horrible experience of treatment so much more bearable and are like a surrogate family.  Without their passion, people skills and expertise, the last four months of brutal poisoning (and that's what it is) could have been a heck of a lot worse.  

The nurses brought a lot of sunshine and hope into my life. They are truly remarkable people and are a credit to the NHS.  They are the only thing I'll miss from my time getting treatment. 

Final blood test

My red blood cells were tested again on Friday morning and thankfully they were fine.  I was absolutely delighted.  It meant that I was able to get my PICC line removed too as I wouldn't be needing it any more.   Happy days.

PICC line after removal

What next?

My journey isn't over yet.  It's just the end of the chemo chapter (with any luck).  It'll probably be a couple of weeks before I start my radiotherapy trial and I'll be starting hormone therapy soon too.  

Stay tuned.   There's more 'fun' to come.

Much love x

Cancer treatment: week 16

This is a bit of a longer blog than usual as quite a few *interesting* things have been happening over the last week.

PICC the dick

The district nurse came out to flush and dress my PICC line on Monday but we hit a bit of a stumbling block.  She measured how long the external bit of the line was and it was just over 2 centimetres longer than when it was originally inserted.  Hmm, that apparently was beyond an acceptable increase.  

The nurse tried to flush the line and draw out my blood to test that it was working OK.  Nothing.  She couldn't get anything in or out no matter how hard she tried.  I even lay down on the bed, sat up, walked around.  Still nothing.  We rang the Oncology helpline for advice. 

To cut a long story short (probably not) I had to go into the Cancer Centre to get an X-ray and, if necessary, a 'drain buster' infusion which would help to dissolve any possible blockage.  The X-ray showed that the PICC line was still in the right place inside my chest so they weren't worried about the extra external length.  

The nurse then gave the line one more go before resorting to the drain buster and hey presto!  It worked.  There was no explanation.  Even moving around can help to make the line work again.

Assessment/chemo day

I've been making a few PICC line covers to keep myself occupied plus I know that many people with PICC lines have been keen to locate some. So on my way into my assessment appointment, I took a load of covers into the Friends of the Cancer Centre to see if they could sell them to raise money.  They were absolutely delighted.  

(Shameless plug alert: if you're interested in a PICC cover please leave a comment below.)

Some of my PICC line covers

I've lost a wee bit of weight this week, despite the amount of cake I ate at the Macmillan coffee morning.  Get in!  One of the nurses overheard my excitement and told me that they had reset the scales to be 14 pounds lighter before I arrived.  I told him to get lost (in a nice way).

I also got a new butter-free banana cake recipe from one of the nurses. 

It's amazing the *fun* one can have when getting bloods taken.

I then went to see my oncologist for my chat.  She examined my toe/fingernails and disappointingly she told me I would lose them but I would end up with lovely new ones.  Which is nice.

Chemo

When I went to get my chemo, my PICC line started playing up again. The nurse could get the liquid flush in but could not get any blood out.  It was absolutely imperative that the nurse got blood out before giving me chemo otherwise the chemo could accumulate in my arm and create a hole.  Bloody hell!

We tried all sorts of things to get blood out, for example coughing, waving my arm around, letting my arm hang loose, turning my head from side to side.  She kept putting in new syringes and trying to draw out the blood.  I started to get quite worried as it felt like my PICC line was being pulled out, although it was firmly locked in place.  I was also dreading the thought of having to get chemo through a cannula into my now tough veins.

Having got a second opinion, the nurse asked me to march up and down reception.  Everyone stared at me as if I wasn't right in the head.  And it STILL didn't work.  As a last resort, another nurse came over to see if she could do it.  She sat me more upright, raised my arm and - weyhey - out came blood.  

Chemo was then very uneventful in comparison.  I fell asleep.

Radiotherapy - trial or not to trial?

I mentioned in my last blog that I had been invited to take part in a trial where they would test if radiotherapy could be given over five days instead of 15.  I've been dithering about whether to do it or not.

Well, I had my radiotherapy planning appointment today where I met my oncologist and a number of trial clinicians.  I asked them loads of questions for nearly an hour about the pros and cons of the trial and the data they had from previous human/non-human tests.  My husband came with me to be devil's advocate and also in case he thought of things to ask that I hadn't.

I was still in two minds during the meeting but my intuition was gradually leaning towards taking part.  But what eventually swayed it for me was:

• when the oncologist said, totally unprompted, that she would have no hesitation in doing it herself or recommending it to any of her family members
• the fact that I will also be far more closely monitored than through the normal regime and if there is any delay in my oncologist seeing me, the trial team can get my appointments accelerated.   

I said yes.  Let's be a glass half full not half empty lass from now on.

Radiotherapy planning scan

Later in the morning I went for my planning scan.  This involved measuring me up using a CT scanner and then tattooing my chest in strategic places with small dots.  This will tell the radiographers exactly where to zap when I go for my radiotherapy.   

It was freezing in the scanning room and I had to lay there with my chest fully exposed.  I was so relieved there were no men in there.  I would have felt quite embarrassed but I suppose I should be over that by now.

The radiographers took great care in positioning me on the scanning bed and marking my chest with felt tip pens and wires.  I had to lie there with my arms over my head and stay perfectly still whilst the scanner went over me.  I kept imagining all sorts of itches on my face and had to try desperately to avoid scratching.

Once the scan was done, the radiographer got the little tattooing needle and quickly jabbed it into three places.  It wasn't as bad as I thought it would be.  The jab in the middle of my chest was the sorest one probably 'cos there was a little less flesh there.

The scan took less than half an hour and I was free to go.  My first proper radiotherapy session will be next month, all being well.

To finish, here's a picture of Cancer Centre garden which I thought was delightful.

The Cancer Centre garden

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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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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 blasé 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.

PS

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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.

PS

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