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

PS

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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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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!

PS

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Donate to my step-daughter's fund-raising page for Macmillan

My top tips - post surgery and during treatment

I thought I would share some tips that have helped me after breast cancer surgery and during treatment.  I'll try to keep this up to date as I learn more from going through the different stages of my treatment. 

These tips are based on my own experience so it might be worth double checking with a cancer professional just to make sure that some of them are suitable for you. 

My tips

• Going to appointments: take someone with you (if you can) when, say, going for initial appointments: in the early days I was bombarded with information and my mind couldn't think straight. I was in shock and despair.  I couldn't take everything in so having someone who can make notes or remember important information is really helpful.  Don't be afraid to ask questions either.

• Try crop top bras: I found them to be more comfortable to wear post-surgery than a traditional bra.  You don't have to put your arms behind your back to do them up and they don't dig into you either.  But try to step into them rather than putting them over your head, otherwise you can get all trussed up and hurt delicate areas just like I did (see Home sweet home).

• Carry a small first aid kit: I had all the lymph nodes removed from my armpit.  That brings a risk of lymphoedema in the affected arm from, for example, cuts, burns, sunburn, or insect bites.  So just in case, I carry a small portable first aid kit.  In it I have plasters (Band Aids for American readers), a small bottle of hand sanitiser, and small tubes of antiseptic cream and sunblock.

• Keep a journal:  I use it to write down all my symptoms and how I'm physically feeling.  This is really useful, for example, if you have to ring the Oncology Helpline or when getting assessed during your treatment.  I have been treated quickly when I've sought advice about worrying symptoms, plus the cancer doctors use the information to assess your treatment. Also it's useful if you decide to write a blog!

• Use cling film: I have a PICC line (see Second chemo and its aftermath) and I can't get the dressing wet.  So when I have a shower I wrap my arm in cling film before putting on one of the plastic sleeves I was given.  I've just about mastered the art of putting on the cling film by myself by sticking the end on the edge of the sink, putting my arm on it and then wrapping the film around the dressing.  

• Try pineapple: my taste buds have been compromised due to the chemo, plus I get a very dry mouth.  I eat tinned pineapple which helps.  It also can also apparently soothe a sore mouth. Eating pineapple ice lollies are quite good too I've heard.

• Eating boiled sweets: be careful.  I ate some to help soothe my dry tongue but I cut the roof of my mouth on them.  They were rough, fizzy sweets and the Oncology Helpline were worried that my mouth would break down and become ulcerated.  I got some special mouth spray and gel from my doctor, which helped to heal my mouth and prevent things getting worse.

• Get outside or meet friends: it's good to get some exercise (see Getting out and about) and meet friends but be aware of anyone who might have coughs, colds, sniffles or snuffles.  You don't want to pick up an infection.   Remember to wear sunblock and take a bottle of water if you go out though - you don't want to get burnt (chemo can make that worse) or dehydrated.  Exercise and meeting friends has really helped to improve my mental wellbeing. 

• Moisturise your skin: chemo can make your skin go a bit dry and also you don't want cracked skin on any areas of the body at risk of lymphoedema.  I use aqueous cream (a bargain from a discount store) and my skin has never felt so soft!

• Dealing with hair loss: I gradually got my hair cut shorter and had violet streaks put in.  Hell, I thought I might as well look a little eccentric whilst I was at it.  Then when it started to fall out, my husband clipped it to within an inch of its life.  I wanted to get it cut short so that hopefully it would be less traumatic when it did fall out.  It sort of helped but I still felt quite sad (see I am not my hair).   I also wear a sleep cap at night which helps to keep my head warm as it can get a bit chilly.  I look a bit like Wee Willie Winkie from the nursery rhyme when I get up to go to the bathroom in the night.

• Searching the web: be VERY wary about looking for information about your cancer, treatment or survival rates etc online.  I can't stress this enough.  Some website content can scare the living daylights out of you especially sites who have their own interests at heart, are alarmist or potentially offer incorrect or out of date information.  You don't need this in your life.  Check out official or reputable websites to get the best source of information (please still read my blog though 😃).

Do let me know if you have any other tips you'd like to share in the comments below.  I'd love to hear from you.

Until next time.

PS

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Pre-chemo assessment

I haven't written a blog for while.  I've not really had much to blog about I suppose.  It's been the usual ups and downs and getting on with things. I've had days out here and there (see photos), gone for walks, napped, and been occasionally bored as hell.  

Me on Downhill Beach wearing my brilliant NHS wig

Downhill Beach and Mussenden Temple

Glorious Downhill Beach

Today I went and had my third pre-chemo assessment.  This is a regular appointment which takes place every three weeks.  It's to make sure for example that I can go ahead with my chemo treatment the next day or if the dosage needs to be adjusted.

Waiting to be seen

I have mixed feelings when I sit in the waiting area of the cancer suite. It's a peaceful place with lovely nurses and volunteers but I have to admit I find it a bit depressing.  

I look around and it makes me sad seeing how many people are being treated and what we all look like.  I have to remember not to talk too loudly (quite hard for me) or laugh at anything my husband says.  I don't want to be insensitive.

It seems that most people in the waiting area are of mature years with a handful of younger folk.  As Groucho Marx once said, 'I don't want to belong to a club that will accept me as a member'.  That's exactly what I feel like.  I don't want to be in the 'Cancer Club', I don't want people feeling sorry for me, I don't want to feel like I'm in God's Waiting room, I don't want to get older and sit with other older people who are getting treatment.  In my head I still feel like I'm 21 and that cancer can't happen to someone like me.  Get the picture?

Bloods, weight and a debrief

I had my bloods taken and got weighed.  Surprisingly I had only put on a couple of pounds since last time, which is not bad considering I have been comfort eating or eating rubbish because my tastebuds have changed and things don't taste right.  The nurse said she would be more worried about me if I was losing weight.

After the blood test, I met with a specialist registrar for a debrief.  Turns out that my white blood cells are lowish so I need to have a white blood cell injection this week, given by a district nurse.  

The registrar asked me all sorts of questions, plus I gave him a load of information about things I had experienced which I had written down in a notebook.  Things like tummy upsets, heart palpitations, a sore forearm, a sore hangnail and little finger on my vulnerable side (the registrar thought he might have to defer chemo in case it was infected but he decided it was OK), sore chest/throat and feeling queasy during the second week of the cycle.

Top tip

If you're going through treatment or have had surgery, write down everything you experience, when you experience it, what it feels like and for how long.  This is important for when you're assessed.   Every bit of information is really useful for the doctors as this can influence things like the dosage of drugs or if they need to postpone treatment.  They can also give you things that might treat some of the side effects for example tummy upsets or queasiness.

ECG and X-ray

The registrar referred me for an ECG plus an X-ray to make sure there were no issues with my heartbeat and to check that my PICC line was in the right place.  

After I had the ECG, I wandered down to the busy X-ray reception.  I sat in a spare seat.  I wasn't wearing my wig nor a chemo hat - my bare head was on display (I've come to the point where I don't give a toss what I look like when I'm in the hospital).  I saw a woman walking towards me who was staring at me with a look of abject horror on her face.  She was either a) very taken aback or b) about to crap herself.  I thought maybe I had taken her seat so I asked her if I had, but no I hadn't.  The only thing I could think of was that she had been genuinely shocked by my appearance or she thought if she sat next to me she'd catch cancer.  Er, no! 

I got to see my x-ray photo.  It was fabulous to see my lungs in great detail and where the PICC line was positioned.  The registrar took time to explain the different things he could see.  Despite being told when I got my surgery results that my right lung was partially collapsed he said he couldn't see anything of the sort.  Bizarre!

So that was today.  Tomorrow is chemo day.  I hate chemo day.  I hate chemo week to be honest.  But I'll be halfway through chemo so that's got to be a good thing!

PS

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