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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Getting out and about

Research says that physical activity has great benefits, both during and after cancer treatment.  The advice I've been given is to try to do about 150 minutes of physical activity a week.  Now, as I've probably only ever done about 150 seconds of physical activity a week before I was diagnosed, I thought I'd better get off my backside.  

Tai Chi

The first thing I did was to join a Tai Chi class sponsored by Macmillan Cancer Support.  It's a graceful and spiritual form of exercise which I've discovered, much to my surprise, requires more control over muscles and a greater degree of co-ordination than I ever expected.  

At my first class, I quickly realised that an elephant on a pogo stick would have had a better chance of getting to grips with Tai Chi that first night than I did.  But I'm sticking at it and I'm in a group of people who make me feel welcome.  It really is a lovely activity and I come away from it with an inner warmth, a calmer mind and a feeling of mutual support.

Move More

I've also met up with a fantastic Macmillan 'Move More' co-ordinator who has worked with me to understand my level of activity both pre- and post-diagnosis.  She has helped me set goals to increase my activity levels.  Even gardening counts as a physical activity.  

I'm now starting to plant vegetable seeds for the first time in my life.  If someone had told me 20 years ago I would be growing my own vegetables, I would have laughed out loud.  And trust me, I have a really loud laugh.

I also now go to a weekly Move More class for people living with cancer and cancer survivors.  It's a little bit like circuit training but is very much geared towards the attendees' needs.  The people who go are really friendly and chatty.  We laugh and joke but we knuckle down to the exercises.  There was one woman there who, whilst we jogged, told me she had incurable cancer but wanted to do something to help tackle her fatigue.  She was a stunning looking woman.  I am rarely lost for words but on that occasion I was.  I just didn't know what to say that didn't sound naff.  Her story touched me deeply.  

'There but for the grace of God...' and all that.

Coffee and Chat

I went to my first Coffee and Chat session organised by Action Cancer at the Macmillan Centre. I met cancer mentors who talked to me about their experiences and who gave me lots of tips, for example moisturising my feet to reduce the risk of ulcers during chemotherapy (I don't know if this is true yet as at time of writing I haven't started chemo).  

Cancer mentors are really positive, inspirational people.  They've been there, done that, got the T-shirt.  They listen to you and give you practical advice but more importantly they give you hope.

Wednesday Walks

Something else I've started to do is to take part in 'Wednesday Walks' organised by Connswater Community Greenway.  I've discovered areas of East Belfast I knew nothing about.  For example, the first walk took us to a place called The Hollow (see pic) made famous in the song 'Brown Eyed Girl' by Belfast's own Van Morrison. 

The Hollow, East Belfast

 The Great One

I met a lovely former Canadian resident on one of the walks.

We talked about ice hockey which is my favourite sport to watch.  She told me that her husband had once taken her many years ago to see the Toronto Maple Leafs (go Leafs!) play at the famed Maple Leaf Gardens.  Wayne Gretzky - the Great One - was playing in the game.  I was about to bow down and say 'I'm not worthy' when she said something that astounded me: she read a book throughout the whole game.

Wayne Gretzky.  WAYNE GRETZKY.  The greatest ice hockey player that ever graced the game.  And she didn't bloody watch him!  

Next time...

Taking control (and no, it's not about Brexit).

PS

Let me know below if there's anything specific about my breast cancer journey you'd like me to blog about.

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