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!

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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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