Ups and downs

This latest bout of chemo has hit me harder than the earlier ones.  I've had no energy and when I walk I find I get out of breath quite easily.  I just want to sleep or sit on the sofa and watch box sets on Netflix.  I couldn't even face the thought of writing a blog.  But I feel quite a bit better today.

Infections

Although chemo can be a life saver, it can play havoc with the body.  For example, over the last couple of weeks, I've had thrush in my mouth, a tongue like a sponge and an infected little finger.  I've been desperate not to let the infection get worse as that could have serious implications. As my body can't fight the infection on its own due to compromised immunity, I'm now on my third course of antibiotics and second lot of ointment.  

That'll teach me to try to pull out a hangnail (if you're on chemo and tempted to do it, DON'T!).

White blood cells

I also had to have a white blood cell injection because my white cell levels were low.  It went into my stomach fat (I've plenty of it) and was pretty quick and painless.  My bone marrow should hopefully start to produce more white blood cells in time for my next treatment.  

I was a bit nervous about the injection as I'd heard some grim stories about the side effects such as bone pain but luckily I had nothing of the sort.  I was a bit alarmed however when I looked at the composition of the injection and 'e-coli' was mentioned.  Bloody hell!

Food and drink

There's one thing that has really pissed me off: food generally tastes disgusting.  I love my food so this is a particularly unwelcome side effect. It has been especially bad during the first two weeks of this latest chemo cycle.  Every mouthful has been like eating cardboard.  

The thought of certain foods and drink also makes my stomach turn. Last week the only things I actually wanted to eat were salty items such as roasted peanuts, crispy onion rings, Ritz crackers followed by Starburst as dessert.  Healthy, eh?  

Even tea and our tap water, which usually tastes crisp and pure, tastes weird.  As for chocolate (including a lovely homemade chocolate cake a neighbour gave me), it feels far too rich and cloying and I've struggled to eat it.  I never ever thought I would say that about chocolate.

  

I did manage to meet up with a couple of work colleagues for a few hours.  Whilst they knocked back cocktails (with my blessing even though I was as jealous as hell), I stuck with the mocktails.  Even the bubbles in the mocktails made it feel like I had a million tiny needles shooting into the roof of my mouth every time I took a sip.

Listen to your body

What I am doing though is listening to my body more.  If I feel tired, I take a nap.  If I can't walk too far, I stop and sit down.  I try not to rush around as much as I used to but I sometimes forget and then my husband has to nag *remind* me.  

As my taste buds have been slowly recovering, I have actually felt like I want to eat more fruit, salad, vegetables, olive oil and brown rice.  It's strange how the human body seems to know what it needs.

I look forward to the day I can start to taste the delights of food again.  I intend to savour every mouthful. 

PS

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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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The first cut is the deepest: part 2

I heard my name being called through a fog of anaesthesia.   The surgery was over and I hadn't died.  

The best bit after coming round was the post surgery tea and toast.  It was honestly the best tea and toast I've ever had in my life.  If I end up on death row, I'm going to ask for that as my last meal.

I was wheeled up to the ward about 7pm and they put me in a side room (ooh, thank goodness, there would be no snoring to keep me awake).  My husband and son were waiting for me.  I was so happy to see them.  I spent the next hour talking gibberish as, bizarrely, I was both groggy from the anaesthetic and on a high from the other drugs.  I was also still peckish so my husband went off to the shop and got biscuits, a croissant and two bars of Galaxy chocolate for me.  Heaven.

All night long

I had a wonderful nurse called Maxine look after me throughout the night.  She popped in every couple of hours to check my vitals.  We chatted about all sorts of things but whenever she came in and she had to wake me up, I kept asking her what the time was.  I can't for the life of me think why I was fixated on the time!  I mean, I wasn't exactly going anywhere was I.  

Breathing legs

I had a couple of special contraptions wrapped around my legs which inflated and deflated throughout the night.  The idea was that they were meant to help circulation and prevent me from getting a blood clot.  

In the depths of the night, I can't help thinking that it sounded like Darth Vader was at the end of my bed.

Morning has broken

At 5am, I woke with a start and couldn't get back to sleep - I was wired to the moon.  I cracked open a bar of Galaxy.  Maxine, bless her, came in and made me a cup of tea, gave me a wash, helped me get into my pyjamas and changed my bed clothes.  I saw the sunrise over the car park.  

The lovely Maxine went off duty at 8am and when I thanked her for looking after me, she replied that it had been an absolute pleasure.  She was a truly fabulous nurse and a real credit to the NHS.  

What a relief

That morning I was visited by the breast care nurse, various doctors and the Registrar who was in theatre with me.  I felt like a specimen in a jar.  To my great relief, the registrar said the CT and bone scans were clear apart from wear and tear in various areas.  You cannot believe how relieved I was when he told me that.  I had been so, so, worried that the cancer had spread and thankfully it hadn't.  Phew.  Things were looking up after all.

Life is a minestrone

You may have guessed by now that I love my food, so I have to tell you about my lunch.  It was delicious: potato and leek soup, roast turkey, peas, corn, turnip (I used to call it 'swede' until I moved to Northern Ireland), mashed potato and then jelly and ice cream for afters.  I felt like a kid again.  

I'm not a fan of Jamie Oliver but if any of the hospital food was inspired by him I'd go and give him a great big kiss.  Well, OK, that's probably a big fat lie.

Homeward bound

I was allowed to go home at lunchtime, accompanied by painkillers and a drain in my side, which the nurse told me how to empty and reconnect.  Eugh. 

Before I left the hospital I was also reminded about the risk of lymphodoema.  'What's THAT?' I hear you ask.  Something to avoid, you hear me say!  Because all the lymph nodes in my armpit had been removed, there was (and still is) a risk that an insect bite, a cut, sunburn, cracked skin, a hangnail and such like could cause my right arm to irretrievably swell up and never drain properly ever again.  

I now protect my right arm with my life and care for it like a newborn baby.

Next time...

I'll blog about being at home - feeling bored, sore and terrified of pulling out my drain - and my surgery results.

PS: 

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