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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Sunday girl

Today I felt surprisingly good.  I was meant to go to the annual gathering of my husband's family today but I woke this morning feeling a bit wrecked.  So my dear old husband had to go on his own.  I'm also still very nervous of big congregations in close quarters in case I get an infection.  I'm particularly susceptible to one at the moment as I'm in the middle week of my treatment cycle.  That's when the white blood cells have been typically destroyed or reduced.

I did have a bit of, um, 'tummy trouble' this morning though.  I've also been getting a bit of earache in both ears but nothing serious as my temperature has been fine.  I also kept waking up during the night with a really dry cough.  Apparently at 2.00am I shouted out 'OH!!'  It was loud enough to wake my son but clearly not my dead-to-the-world husband lying beside me.

This morning, I washed the floors and made myself a smoothie for cancer patients following a recipe which I found on Pinterest.  It was absolutely delicious but I've just realised that it's meant to serve two people.  I drank it all.  Oops.  

I also put up a magnetic door net on my kitchen door to keep bugs out.  I did it all by myself, and whilst it wasn't difficult, I was quite proud that I didn't have to rely on my husband to do it.

This afternoon, I made pea and ham soup, a quiche, coleslaw, and chicken noodle soup* whilst listening to the charts from this week in 1966, 1976 and 1984.  The music was sublime.  I mean, how can anyone fail to be uplifted up by the Kinks, the Beatles, Thin Lizzy, Frankie Goes to Hollywood and Wham!?  Bloody magic!  I danced and sang along in the kitchen, much to my teenage son's irritation. 

Just a quick word about my son.  He is such a good kid even if I do have to give him a metaphorical boot up the backside every now and again.   He is so resilient and seems to be bearing up really well.  I've been open and honest with him about my treatment but I've kept it really upbeat and positive.  I know he's 'OK' because he still gives me cheek and gets impatient with me.  Sometimes I say something (tongue in cheek) about my treatment and he goes, 'Oh, no, you're playing the 'Cancer Card' again.'   Cheeky monkey.

As I write this blog, my energy levels have started to dip and I'm beginning to feel quite tired.  My husband won't be home for a while so it looks like an evening on the sofa watching an episode of Mad Men is on the cards.  Donald Draper, here I come.

*I'm an idiot.  When I looked at the soup the next day, it was no longer liquid but a whole load of chicken infused noodles.  I looked at the recipe again and realised I should have used cooked noodles not uncooked ones.  I blame chemo brain.

PS

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Days like this

One week on from chemotherapy and it's been a strange week to be honest.  I've been up and down, both mentally and physically.

Day one

I slept badly the first night of chemo, but I suspect that was very much due to the steroids.  During the day, I was listless and a bit down.  I binge watched episodes of Better Call Saul (getting better every season) and then fell asleep on the couch for about an hour and a half.  

The next night I was quite tearful when I went to bed.  My head was telling me that my body was literally being poisoned.  It simply didn't feel psychologically right for me to have these toxins pumped into me which were aggressively invading my whole system from inside out.  I knew my treatment was going to nuke any stray cells and act as a sort of insurance policy but my head just couldn't accept it.  Even visualising sitting in the chemo bay and the massive syringes being inserted into the cannula for my next treatment made me feel quite distressed.  

I kept touching my hair too to see if it was starting to fall out but it wasn't. I became really upset at the thought of losing my hair, despite my earlier bravado.  My mouth also felt like the bottom of a budgie cage but the wonderful Oncology helpline recommended a specialist mouthwash for me, which helped.  Luckily, I had no sickness so at least the tablets were working.

I kept telling myself that I was glad that it was me that had the cancer and not my husband or son.  That would have been devastating and I honestly don't think I would have been able to cope if it was either of them.

I felt like I was descending into quite a dark place. 

Day two 

The second day was quite a bit better.  A couple of bandanas that I ordered online turned up, one in 'teal', the colour of the Belfast Giants ice hockey team.  I fully intend to wear that when I eventually get along to the new season.  

I also went to the Move More class and everyone was delighted to see me.  I had bags of energy, courtesy of the steroids, and reckoned I could have tackled the class ten times over.  

When I got home I did two lots of washing, hung it on the line, potted a load of garden plants and cooked dinner.  My goodness, these steroids are GREAT!*

Day three

I slept 10 hours and then fell asleep on the couch for another three hours.  Blimey, 13 hours in total.  I was starting to feel quite spaced out but I didn't feel ill or have a temperature.   I think I simply had had too much sleep.  

My sense of smell also seemed to have become very acute and the thought of drinking coffee made my stomach churn.  Crikey, life without coffee.  Is there such a thing?

Day five

I got tearful again and said to my husband, 'I want my life back.'  'Take it back then,'  he replied.  And you know what?  He was bloody right.  I don't want to be sitting around feeling sorry for myself, scared stiff of what the drugs will do to me, scared stiff of whether the bastard cancer will return.  

I got off my backside and went for a walk, had tea and a scone, bought a floaty, sequinned top and two new gorgeous fish for my pond at a bargain price.

Some beautiful flowers had turned up whilst I was out, but there was no message from whoever had sent them.  I later found out via Facebook that it was from some of my former colleagues.  Love you loads, guys.

Day six

I walked down to my local shops for some exercise.  The heat was getting to me.  I wore my new floaty top, a bandana to keep the sun off my scalp and some dangly crystal earrings.  It was only when I saw my reflection in a shop window did I realise I looked like I was going to tell someone's fortune at a funfair.  Ah, well.  I've always wanted to be an eccentric, middle-aged, English woman.

I mooched around a bit and ended up in the Marie Curie charity shop where I found a giant Louis Vuitton leopard print scarf for £6.00.   Hmm, nice for when I get my bald head, I thought.  Little did I know that the full price of such a scarf would usually be in the hundreds of pounds.  What a bargain.   

I have a feeling that charity shops are going to be my new favourite place.  I'm going to need to go back to work eventually to pay for all the stuff I'm buying.

My Louis Vuitton £6.00 bargain

In the evening, my husband and I went for a walk on Bangor seafront.  I had three scoops of Morelli's delicious ice cream.  A girl's gotta have a wee treat now and again.  Well, OK, all the time in my case.

Costa del Bangor

Day seven

The weather today has been very muggy.  I dithered about whether to do the Wednesday Walk as I thought it might be too much for me, especially as the Helpline had advised me to take it easy and not overdo things.  Sod it.  I reckoned I could always come home if I felt it was too much.

I stuck on my three inches of make-up, my sunblock, my NASA baseball cap and my bottle of water and arrived at the meeting point.  The group were so pleased to see me and my new Canadian friend (the one who I still cannot believe had read a book whilst Wayne Gretzky played - see 'Getting out and about') gave me a massive hug.  The leader of the walk also made sure that I was well looked after.

As we started to walk, we spotted a woman pulling a covered cart.  Now, people in Northern Ireland are incredibly friendly and can't resist a bit of a chat with visitors, and so we all had to ask what she was doing.  It turned out her name was Anna, she came from Idaho and she was literally walking the world to raise awareness of the need for clean drinking water.  She had done the USA where she said she had run out of land and so was now doing Europe, Ireland in particular.  Anna had only got off the ferry in Belfast a couple of hours earlier.

Anna

We all thought what Anna was doing was absolutely marvellous so we crowded around her to have our photos taken.  We then dragged her to see Van Morrison's house and Cyprus Avenue, made famous in Van's song of the same name.  She really seemed genuinely delighted by this diversion and we were too.  

Van Morrison's house

Good luck, Anna.

Go to Anna's world walk website 

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*blah, blah, blah, usual common sense rules apply etc