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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You are loved

The support I have had from friends, family, colleagues and even strangers since my diagnosis has been truly wonderful.  I want to give you a flavour of how kind and thoughtful people have been. 

My husband and son

My husband and son have been amazing.  They have put up with me during some incredibly dark moments.  I do try desperately hard not to get irritated or upset by things but it's a challenge sometimes.  

My husband and son help to keep me sane.  They haven't yet asked for any support from anyone for themselves.  But they know that if they need it, it is available to them, both from other relatives and also many cancer support organisations.

I love them both very much and I honestly don't know what I'd do without them.

My relatives

My relatives (both my immediate and extended family) have been fantastic too.  They have been all so very kind, sent me lovely messages of support, lit candles, sent flowers, said prayers and have made me laugh endlessly.  They are truly brilliant and I am lucky to have them in my life.

Friends and work colleagues

My friends and work colleagues have been ace.  They are based all over the UK so their support and kindness has manifested itself in all sorts of ways.  They've sent me cards, flowers, messages, healing vibes from the chalice well in Glastonbury, gifts, kisses, given me hugs, lit candles, took me for meals and prayed for me.   

The chalice well, Glastonbury

I've also managed to meet up with friends from work, including a former work colleague who had breast cancer 11 years ago.  She's such an inspirational role model who never allowed cancer to get her down and didn't give a stuff about going out with her bald head.  

One of my former work colleagues also played me a tune on his radio show.  The song was 'Bananas' by a group called Man.  The first time I heard it was about 20-odd years ago when the same chap let me listen to it on his Walkman on the train into work.  I nearly wet myself 'cos I laughed so much at the words.  I still do whenever I hear it.

Social media

What has been a revelation is the reaction on social media. 

I was initially reluctant to tell people on Twitter and Facebook about my diagnosis.  Breast cancer seemed to me to be quite a private thing to go public about.  Then I thought that if I was open about it, people might not feel awkward engaging with me.  I wasn't ashamed or embarrassed about having cancer and I didn't want others to be either.  I also thought that it could be mutually beneficial to reach out to other people with cancer.  

I was a bit worried about being trolled but thought 'so what'.  I told myself if I did get trolled, I would deal with it.  The social media reaction has been totally amazing.  People (many of whom I've never actually met) have reached out to me, sent me many wonderful thoughts and messages and in some cases have privately shared their own personal experiences with me. 

Hockey family

People like me who love ice hockey, for example because they watch it, play it or officiate, often describe themselves as being part of the 'hockey family'.  

The support and kindness I've received from the hockey family has been fantastic.  I've had lovely messages from people connected to ice hockey and the Belfast Giants (my favourite ice hockey team) and fellow hockey fans.  Again, many people have shared their own personal experiences of cancer with me and I feel privileged to be part of that.

What I have learned

I have been deeply touched by everyone's incredible love, warmth and generosity.  The kindness of people has far surpassed anything that I could have ever expected or hoped for.  

Knowing that people are thinking of me as I go through this crappy journey feeds my soul.  It makes me appreciate that I'm not going through this experience on my own.  

What cancer has taught me so far however - and I know it sounds like a cliché - is that life really is too short to do anything other than treat each other with love, kindness and appreciation.  It can make all the difference to someone, especially if they are going through a tough time.  I know it has for me.

You are loved.

PS

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Second chemo and its aftermath

Take your PICC

I had a 'PICC' line inserted last week.  It's a thin, flexible, tube that goes into a large vein above the bend of your elbow until the tip is in a large vein just above the heart*.  Sounds gross doesn't it, but the thought of getting it put in was worse than reality.  

Having a PICC means I can now get my chemo drugs injected and bloods taken through the line.  That's such a relief, as the vein I had the chemo put in last time was starting to hurt and harden and that was only after one treatment.  I didn't need to have a PICC but with limited choice of arms to use for needles, I wanted to go for the easiest and most sensible option.

I had some local anaesthetic in my arm and as the nurse threaded the tube into me, I said to her 'Is it supposed to hurt?'  She smiled and said, 'Hmmm, not really, but you're probably just a sensitive critter!' 

The chemo the next day went in much more quickly and easily than last time.  Phew.

Sleep or lack of

I found it so difficult to sleep the night I had the chemo.  I was tired but wasn't tired, if that makes sense.  As I lay in bed trying to drop off, I could feel my heart palpitating.  I was genuinely becoming more frightened by the minute and was worried that if I went to sleep I wouldn't wake up in the morning.  I kept trying to rationalise things by blaming the steroids.   Yes, it had to be the steroids, didn't it.  Didn't it?

I kept waking up in the night and my heart would be fluttering unevenly and I felt on the verge of panic.  I was tempted to get up and phone the helpline, but told myself that if I still felt like this the next day I would ring them.  I tossed and turned all night long. 

The next day I felt absolutely knackered but the palpitations had subsided a bit.  I refused to take a nap despite feeling so bone weary.  I was angry, ratty and irritated at every little thing that I felt, thought, saw, read and encountered.  Things seemed to be conspiring against me too: I dropped clean washing on the patio, I grated my thumb on my vulnerable arm on the cheese grater, I stomped angrily round the house looking for my glasses until I realised I was already wearing them.

I went to bed at 8.00pm that night and slept a bit better. 

Cancer is hateful

I've started to get a really uncomfortable sensation in my throat and upper chest too.  I can't even begin to adequately describe what it feels like.  It's like I've swallowed a bunch of gigantic fishbones that have lodged sideways in my throat and that my neck and collarbone have got a tight band wrapped around them.  It almost feels like I've got some sort of rheumatism in my upper chest and throat.  I've spoken to the helpline, described the symptoms and they've given me advice.  But it is incredibly uncomfortable and disconcerting.

See cancer?  It is shit.  It is a bastard.  It is evil.  I never knew there were so many implications from having cancer.  I hate what I look like.  I hate feeling crap.  I hate the fact it has happened to me.  I hate the thought of living in the shadow of this awful disease possibly returning some day. 

You don't ever think cancer is going to happen to you.  But it can.  And it does.  My advice to you is to do all you can - as far as possible - to prevent it.  Please don't put yourself through what I and numerous others (in worse situations than me) have to go through.

To finish on a lighter note, here's a picture of me with a stupid homemade chemo cap.  I was having a 'good' (in relative terms) day that day but I'm finding that my sense of humour is starting to dwindle.

PS

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*source: www.macmillan.org.uk

Tiredness, a double take and pre-chemo check

I've been feeling really tired of late and there have been times very recently when I've felt a little under the weather.  I find myself blinking rapidly to keep my eyes open when I'm talking to people.  

I want to go to sleep about 2pm but I'm trying to resist the temptation of a nap so that I can sleep better at night.  I should give in, but I know that an hour's nap (which is what's recommended) would simply not be enough.  I tend to be like a bear with a sore head if I'm forced to wake from a nap of under two hours.  Just ask my husband.

On the plus side, my mouth has healed up which is great news.  

Double take

I met a friend from work on Monday and we took ourselves out.  I had to use the loo at one point but I'd forgotten that I didn't have my chemo cap on and that I had very little hair.  

As I walked into the ladies loo, I must have given the two women chatting in there a real shock.  They genuinely did a double take.  I thought, feck, they must think I should have gone into the men's room. When I came out of the cubicle, I held my fuzzy-felt head high and gave them a friendly smile.  I got one back.

Pre-chemo assessment

I got my bloods and weight done at my pre-chemo assessment yesterday.  Unfortunately, the nurse struggled to find a vein in my left arm.  It took about six goes to find one that yielded any blood and afterwards, the crook of my arm was looking a little black and blue.  Next time, it won't be so difficult. 

Battle scars, plus my PICC line (more about that next time)

My weight


I was gutted to find out that my weight had gone up by two kilos in three weeks.  Oh dear.  I must admit that this last week has been challenging. Hardly a surprise considering I was celebrating my wedding anniversary with my husband and son and had a delicious three course meal.  I didn't have any booze either.  

After my bloods and weight were taken, I had a chat with the breast care nurse.  She gave me a bit of a friendly 'talking to' about my weight increase, in the nicest possible way: go for walks, avoid the Northern Irish way of having a piece of cake/a bun/a biscuit with a cup of tea etc, etc.  But I do!  And I don't!  Okay, so the last bit's not completely true.


The 'look'


I nervously asked the breast care nurse about whether I could get away from the same four walls of my house for a break.  It was at that moment I realised that cancer nurses have a look that they give you*.  The first look was 'don't-put-weight-on-but-I'm-being-nice-about-it' and the second when I asked about the holiday was 'you-can't-be-serious-right?'.  

The look in the nurse's eyes, the tilt of her head and the arch of her eyebrows made my heart sink.  I lost my nerve a bit and said, 'Well it would only be for a couple of days...and it would be on the same island...and I'm sure I'd be able to get to a nearby hospital if I needed to.' That last bit clinched it.  As long as in an emergency I could quickly get to a hospital in Northern Ireland that had an Accident and Emergency Department coupled with a cancer unit, then it would *probably* be OK.  

The thought of a very a short break away from the house provides a glimmer of light at the end of a long tunnel right now.  Only if I feel up to it of course...and I don't stuff my face.



*I think I should clarify. The nurses are absolutely lovely, they really are and I don't want you to get the wrong impression of them.  The look isn't a scary look - it's sympathetic yet nicely assertive, if you get my drift.

PS

Please feel free to leave a comment or suggestion below for a topic about my journey you'd like me to write about.

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I am not my hair

My husband gave me a crew cut last night.  I was getting fed up with having hair coming out and shedding all over my clothes and furniture. So I bit the bullet.  Was I ready?  Yes I was.

Nerves of steel

My husband was very nervous about cutting it.  He'd never done anything like that before and so prepared himself by watching a couple of You Tube videos.   Hmm, that was reassuring.  Not.  I tried to make him feel better by saying that even if he cocked it up, my hair was going to fall out anyway.  

Bravely, he fired up the clippers and started to shear the nape of my neck.  I could hear the buzz of the blades as they sliced through my hair. There was no point in backing out now.

Feeling a bit sad

I felt a little sad and my stomach lurched when I saw hair falling onto the floor.  I just about managed not to cry.  I remembered what one of the nurses had told me about the trauma of hair loss and that was at the back of my mind.  However I just knew deep down the time was right to cut it all off.  Going bald was inevitable and I think if I had delayed the chop, I would have felt worse.

The only time I did get slightly worried was when my husband switched from clippers to extremely sharp scissors to cut the hair near to my ears. I had visions of losing some flesh and bleeding to death.  I demolished half a box of chocolates to steady my nerves.  But, bless him, he was very careful - I still have both ears and no blood was shed.


When I went to bed I put a little sleep cap on to keep my head warm during the night.  I was very toasty indeed.

The good, the bad and the ugly

I've come to the conclusion that there are actually some good points about losing my hair:

• I'll save a fortune in hair cuts, hair products and getting the roots dyed blonde.
• It's not getting in my eyes.
• I don't have to spend ages washing, drying and styling it.
• It feels quite liberating.
• I'm not going to drive my husband mad with hair clogging up the plug hole in the shower.
• I've got the 'punk' hair cut I've always wanted, albeit 40 years too late.
• I can slap on more make-up to detract from my head.
• I'm not going to have a bad hair day.

More importantly, taking control of my hair loss means I'm not allowing cancer to control me.

The less good things about losing my hair:

• I look like a poor man's Sinead O'Connor.
• My head gets chilly.
• It's a bit of a shock when I catch sight of myself in the mirror.
• I can see how grey the hair on top of my head really is.
• I'm worried I'll look like Phil Mitchell (if you're reading this and don't know who he is, he's a character from the BBC soap opera 'Eastenders').

Going out in public

My scalp has started to feel quite sore.  Apparently, that's quite common when your hair starts to fall out. 

I went out this morning to take my son to join a gym.  I didn't feel brave enough to go 'au naturel' so I put a bandana on.  As the morning went on, I thought b****cks to this and took the bandana off and walked into a shop to get a coffee.  I was a bit nervous as I thought everyone would look at me and think that I was some sort of freaky weirdo.  

No-one batted an eyelid.  Result.

PS

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