Life is short, so Live it up, Drink it down, Laugh it off, Avoid the bullshit, Take chances, Never have regrets, and Make time for friends and family

Near the start of 2012 I noticed a small lump in my left breast – I had previously had lumps checked out which turned out to be just cysts so I didn’t worry about it but it didn’t go away and near the end of August I decided to mention it to the dr when I was there for something else.  She suggested an ultrasound to check it out.  When I booked the ultrasound, the radiologist said because I was 38 I would also have a mammogram – eeek!  I had always dreaded the idea of squeezing my boobs between plates for a mammogram!

A week later, I had the mammogram (which was quite easy actually – I don’t know why I had worried about it), and ultrasound of the lump.  They said the lump wasn’t a cyst and that they would ask my GP to refer me to a specialist for a biopsy

A week later I went to my specialist (I have full medical insurance so am going private) – and had a fine needle biopsy.  While I was there, the specialist found a second lump close by the one I had felt, so he did a fine needle biopsy on this too.

A week later, the specialist’s nurse phoned me to advise that the second lump’s biopsy had come back with suspicious cells and that I would need to go for a core biopsy.

Talk about stressful – sleeping and eating became pretty difficult.

In the week I waited for the core biopsy, I felt a lump in the other breast (but thought maybe it was paranoia).

I went for the core biopsy – thank god for quick-working local anesthetic, because they took five tissue samples which I didn’t feel at all but left me with massive bruising.  They did a quick ultrasound on the other breast and confirmed that I wasn’t being paranoid after all.

A long and anxious week later, (and a bit of retail therapy – I bought these three pairs of shoes)….

I went for the ‘results’ meeting where the specialist confirmed the core biopsy showed breast cancer.  He said it was low grade (which is great), and that I would probably need a partial or full mastectomy.  While I was there, he did a fine needle biopsy of the lump in the other breast and again on the second lump in my left breast.

I spent the next week letting everyone know ‘the news’ and have been overwhelmed by the support and kind messages I have had from everyone.

I am still working to keep myself distracted but am glad I only do three days a week as it gives me some ‘downtime’ to sort stuff out.

So…….. the journey begins….

Oh – if you were wondering about the title of my Blog, check out the ‘About this blog’ link.

Today I met with my specialist and he said the biopsy on the right breast was benign (non-cancerous) – yah! but the biopsy on the second lump in my left breast was suspicious so the decision is for a full mastectomy of my left breast with reconstruction being done in the same surgery.

I still have to have an MRI on Wednesday which will give the specialist an even better look at both breasts, but hopefully that will just confirm what we already know and the right breast will still be safe.

On Tuesday I will meet with the plastic surgeon who works together with my specialist, so he can plan what is required for my reconstruction.

Then Saturday I will meet up with the specialist again to hear the results of the MRI and go over more details.

At this stage it looks like I might be having surgery 29 October but that date may change.

The specialist said today that it probably won’t be until after surgery that we will know whether I will need any radiotherapy or chemotherapy – but I am just taking things one step at a time so will cross those bridges if I get to them.  Either way, I will be meeting regularly with this specialist for the next five years.

I am doing great and just sometimes I get a bit teary (for no particular reason).

My hubby and girls are all doing great and are being positive along with me.

I am still overwhelmed by the lovely messages of support and offers of help I get every day from the gorgeous people in my life.

I feel very lucky. x

Last night both girls went to friends’ houses for sleepovers.  It is the first time they have both had sleepovers on the same night so hubby and I went downtown for dinner which was so lovely.

I was excited about sleeping with no chances of the girls waking me up….. then hubby woke me at 4:50am to tell me he has decided to cancel his work trip (he was flying out next Sunday to New York for two weeks).  I kind of think that could’ve waited till morning, but didn’t get mad as he had obviously been lying awake thinking about it.  Nice hubby. I had previously told him to still go as surgery won’t be happening till he gets back but if he doesn’t feel comfortable travelling so far away from me at the moment, then cancelling is the right thing to do.

Here are some answers to questions I have been asked a few times lately:

What is the type of cancer you have?

I have ‘Infiltrating (or invasive) ductal carcinoma’ – this is the most common form of breast cancer (about 80% are this type).  It starts in the milk ducts then spreads to surrounding breast tissue (and over time it can spread into the lymph nodes and on to other parts of the body).

How do you feel/Does it hurt?

I feel fine (just tired through not sleeping well) – the actual lump/cancer does not cause any symptoms or pain (although I am sore from the bruising caused by the core biopsy).

Did you find the lump or was it found through routine screening?

I found the lump (just generally, not through any sort of regular self-checks or anything). It was hard and a bit smaller than a pea (although on ultrasound it is about a centimetre across) and it was moveable (not fused to surrounding tissue) which is usually a good sign but I guess not always.  I had never had a mammogram or anything as I am only 38 – the free 2 yearly mammogram screenings start at age 45 in NZ.

Are you making some dietary changes?

Ahem, those of you who know me well know that I have an appalling diet.  But, I do take high-potency Vitamin C daily and Vitamin E and I have just started on Protein Shakes (with lots of vitamins and good stuff) to supplement my meals to try to put some weight on before surgery as I am a bit skinny at present (more so than usual due to stress).

I don’t consume aspartame as I am a full-sugar type of girl (no diet or low-calorie drinks/food on my watch!).

I don’t smoke, don’t drink tea or coffee and only drink alcohol in moderation (excluding last Monday night), but my single biggest vice is V energy drinks (yes, yes, I know they are incredibly bad for you but I am allowing myself this one bad habit/pleasure).

What have you told the girls?

Even at 6 and 8 years old, I think it is important for me to be open and honest with my girls.  They are really observant and will hear and see things going on, so I sat them down and said I had breast cancer and needed an operation and some medicine and then I would be all better (just like one of my in-laws who they knew had beaten breast cancer), and I warned them that some other people/kids who hear someone has ‘cancer’ automatically think “they’re gonna die” but that isn’t the case and that there are all sorts of cancers and some are really bad and some aren’t so bad and that the one I have isn’t so bad and that I just need an operation and some medicine.

After they had been back at school a couple of days I remembered I should’ve warned them about the potential hairloss thing. And said to them that cancer doesn’t make your hair fall out but that some people with cancer need really strong medicine called chemotherapy and that sometimes, if the chemotherapy is really strong, their hair can fall out and that I probably won’t need chemotherapy, but even if I do, it might not make my hair fall out, and even if it does, it will grow back.  Anna said one of her classmates had already said my hair would fall out (which made me glad I thought to have this discussion to reassure them).  Katie said I could wear a wig like Hannah Montana.

Is there anything we can do to help?

I have been overwhelmed by the offers of support and help.  My Mum (who is an absolute angel and fits in so comfortably with my little family) will be coming to stay when I have surgery.  I know I have lots of fantastic people I can call on to look after the girls, run errands, have a drink with or call to talk.  And, I promise I will call on you if/when I need to.

It has been a couple of big days for me…..

Yesterday I went to see the plastic surgeon about what would be required for reconstruction.  After a bit of weighing and measuring and attempts to pinch-test how much fat I had on my belly, the conclusion was that I am too slim and the skin on my abdomen is too tight (to harvest for that type of reconstruction). Good one Pilates!  My BMI (Body Mass Index) is a bit low too so it would be good if I can put weight on before my operation.  Hubby reckons a diet of KFC double-downs ought to help.

The big surprise at the plastic surgeons though was learning that I would need two operations.  My first (scheduled for 29 October) will involve removing all of my breast tissue and some lymph nodes (but leaving the skin and nipple), and then putting in an empty implant (so I will have a flattie for a few weeks).  After allowing the skin to heal and drain(s) to be removed etc (about 3 weeks), I will then need to go weekly to slowly get saline injected into the implant (luckily for me I will have no feeling in the skin so won’t even need a local anaesthetic for this – freaky!).  These weekly injections will continue until the breast is the same size as the other one.  Then it will be left for about 6 months (or could be up to a year if I require chemo and radiotherapy), then I will have a second operation to remove the ‘fillable’ implant and have it replaced with a silicone one.  (Silicone is now considered safe – unlike 20 years ago).

There is also an option to cut through the muscle on my back and flap that through under the skin to help cover over the implant to make it more natural, but at this stage, the plastic surgeon and I think that we won’t do that in the first operation and will think about whether that will happen in the second operation or remain as a back-up option for future years if my implant suffers bad ‘capsule contraction’ (a build up of scar tissue that can pucker and deform the implant and surrounding tissue).

Anyway, that was yesterday and was pretty overwhelming to take in.  But I am kind of glad I am only finding this stuff out a bit at a time (and only having to deal with hearing about the particular options available to me).  My step-by-step approach is definately helping me get through this.  Hence me not wanting to know anything about chemo or radiotherapy until I know I have to have them.

Then, today, I went for my MRI scan.  Well…… I went in thinking ‘this will be fine, I will lie down and shut my eyes while I am in the machine and it will all be fine’.  Not quite…. It was literally one of the hardest things I have ever done in my life (besides childbirth).

As I sat in my gown with the radiologists putting an IV line into my arm (for the contrast dye they would inject into me), I told them ‘just so you know, I am pretending I am at a day spa’.  They thought that was great.

I had to lie face down with breasts in little table hollows and face in a donut ring, and they put earmuffs on me with my choice of radio station playing (91ZM).  Then I was slid into the machine face down with IV connected up to tubes to inject the dye – to undergo a barrage of magnetic vibrations with very loud pulsating noises of all different frequencies.  I knew they would be taking lots of images, then injecting the dye then taking more images.  After about 15 minutes of this they slid me back out and adjusted a few things then back in and 10 minutes later I went all hot and sweaty and nauseous and was about to pass out and pushed the buzzer and they got me out and I had a bit of a panic attack.  And then I found out they hadn’t even put the dye in yet.  I really thought I couldn’t do it.  My body was sure I couldn’t.  It took all my strength to agree to get back on the table and finish the job. But I did it.  God I was proud of myself.  It sounds so silly but I had to use everything I had to overcome my overwhelming feeling that I would faint or vomit or both.

But I managed, and will be sending a card to the two lovely radiologists who helped me through it.

Now I am spending a few nights with my daughters at my parent’s house in Marlborough – it is so nice and relaxing here.

On Saturday I will be back to the specialist to hear what the MRI showed and do more planning for surgery.

Here is what the MRI machine looked like:

And here is where I was pretending to be:

Ahhh – Bora Bora.  One day hubby and I will go there again.

x

I spent the last few days visiting my family and a couple of close friends in Marlborough.  It was so nice to unwind for a while.  My girls are still down there for a few days so hubby and I have time alone!  Unheard of!  We went out for a lovely lunch today (I had the fattening pork belly) and we went to the movies (where I had a stracciatella gelato).

Before lunch, we went to meet with my specialist to find out the results of my MRI.  It pretty much confirmed what we already knew – the specialist showed us the images which had shadows etc where the cancer is confirmed and you could see the area that is suspicious (in my left breast).  The radiologists are still reviewing my MRI films and measuring the uptake and release of the contrast dye etc and there is a possibility that this might result in my surgeon recommending a lumpectomy on my right breast (to remove the lump there) in the same operation as my mastectomy of the left.  I will know this in the coming week.  I am fine if that is decided as the best course of action as there is no point taking risks with these things.

It was strange seeing the MRI images – it was so easy to see the lumps and shadowing – like the shadow and speckles the specialist showed me in my Mammogram images.

Monday 29 October has been confirmed for surgery – at, get this, 4pm!  I’ll be nil by mouth all day (from about 6am) so that will be a loooooooong day.

Oh, and before I forget, another FAQ from people is whether there is any history of cancer in my family – and as far as I know, there is none – not in any of my blood relations.  Crazy eh.  I guess it really can happen to anyone.

On the shopping front, I have bought a few pairs of new pyjamas, and a few dvd boxed sets of tv shows I haven’t seen:

And I have started planning my Christmas Shopping as I’d like to get much of that knocked out in the next three weeks. Busy Busy!

The results of the MRI are through and we don’t need to do a lumpectomy of the right breast, so rightie will be breathing a sigh of relief.  Still, it feels weird to think that I will be going into surgery and waking up with leftie gone.

When I met with my specialist he suggested I see my GP about getting something to help with anxiety and to help with sleeping, as I am finding it really hard to sleep and often have an overall ‘nervous’ feeling with lots of adrenaline etc.  Apparantly it is quite a normal reaction but it would be good to get on top of this so that I am not exhausted by the time I have to head into surgery.

My GP was great and has given me some meds that aren’t too strong or too addictive.  Just enough to help chill me a bit (which you will probably all agree would be a good thing for me) lol.  And, yes, I have natural health calming options but needed a bit more in this instance.

I also found a great ‘guided relaxation exercises’ podcast, which is useful for helping me get to sleep:

Although the woman in the podcast cover looks like she is experiencing something a little more enjoyable than relaxation if you know what I mean.

I received my surgery pack from the hospital – with plenty of forms to fill out and instructions.  A few interesting questions ‘Do you want any body or tissue parts removed to be returned to you?’ – ‘ahhhhh…. NO’ (I don’t fancy taking my boobie home in a bag).  ‘Dietary Requirements?’ – ‘I’d like a Salt and Pepper Calamari entree, Pork Belly with crackling, Sticky Date Pudding and a nice glass of Champers thanks’.

The hospital also sent a special pack of ‘anti-bacterial wet wipes’ with diagrams on how to thoroughly disinfect myself before surgery – which gave the girls and I a bit of a laugh:

I haven’t started yet on the question about previous surgeries – I might need to staple on an appendix for them (I have had 6 general anaesthetic operations in the past – from gall bladder removal to wisdom teeth and everything in between).

With two weeks and two days until surgery I am definately feeling more anxious.  I am really grateful that everyone at work is being so incredibly understanding and supportive, but it is still very very hard for me to have to hand my work over to others, and to know that some of my proactive work will go on hold.  I hate not completing things and having to let go of ownership for things.  But, it will be ok and I have wonderful co-workers stepping in to help me out.

I have been getting some advice from the healthy food evangalists out there – so just to let you know, I am slowly adding a few more healthy components into my diet and reducing some of the less-healthy ones, but for me, that is not going to be a drastic overnight diet miracle.  It is simply going to be a few incremental changes as I feel I want to.

On the medical front, I have no more tests and things for now – just a pre-op meeting with the nurse on Friday.

It was a rough week with a nasty tummy bug striking down our family one by one.  Wednesday night I slept on the bathroom floor and was vomiting violently for 8 hours.  Not great when I am trying to put some weight on before surgery.  I now weigh only 53kg – two less than when I first met with the plastic surgeon a couple of weeks ago.

I have 10 days to get some blubber on.  It won’t affect the surgery, but I think it will help me be a bit ‘sturdier’ for the recovery if I have a bit of cushioning.  Lots of lovely friends have offered me some of theirs but alas, I must ‘grow my own’.

I had a pre-op meeting today and found out a lot more about my results etc.  I really do have a great prognosis – my cancer is Grade 1 (the lowest) and is estrogen and progesterone receptor positive – which means my cancer should respond well to hormone suppression treatments (which might mean taking a pill every day for the next five years), giving me another tool in the toolbox of things that might be used to treat me post-op.

We have also decided to get the lump on the right breast removed during the same surgery – so sorry, rightie, you’ll have a wee scar too.  Knowing the lump is there, and being able to feel it means that even though the needle biopsy and MRI show no cause for concern I will feel happier knowing it is removed (and sent off for testing).

Oh, and by the way, before all this I never referred to my breasts as ‘leftie’ and ‘rightie’ that is just for the benefit of my readers so they know what I am on about.

More great news – my chest xray and blood tests were clear. Imagine Gangnam Style dance here.

When they do my mastectomy, they will also do an axillary dissection – removing the lymph nodes from under my armpit down to my breast.  The results of tests on these will be quite major as this influences the treatment I will require.  If there is cancer in any of the nodes, it means that my cancer has been able to leave my breast and may spread to other parts of the body.  A.K.A Chemotherapy required.  Even if the nodes come back negative for cancer, Chemo may still be recommended as an insurance policy given my age etc.

But… one step at a time.

The removal of my lymph nodes causes a long-term effect – making me more at risk of lymphedema (obstruction and swelling caused by a compromised lymphatic system).  Which means, whenever I travel long-haul in the future, it is recommended that I wear a compression stocking on my left arm (not quite jetsetting-glamour), and I need to treat any cut or type of injury to that arm/hand with caution as infections aren’t as easily filtered out with those lymph nodes removed.

A great deal of physio-type exercise will also be required to breakdown the scar tissue that will develop under my armpit so that I can get full arm-over-head movement back.

So…… quite a lot of longer-term information to take in.

I realise I am too old for cancer beads (kids with cancer often get given a necklace string and put a bead on for every treatment procedure they endure).  So I have decided instead, to let my girls do a string each for me.  So I have bought some lovely beads to give them tonight and each time Mum goes to have a blood test or scan or any type of cancer treatment procedure, they can add a bead to their necklace.  I think that will help them to feel ‘connected’ in some way to what is going on, instead of it just being something that is talked about.  And, they will have something tangible to get their head around all the things Mum is doing to get better. Hopefully it’ll be a short necklace! Lol

The countdown is on – Monday is creeping up fast!  It is a shame my surgery is so late in the day (4pm) so I won’t be out until around 7pm.  So my post-op blog update will most likely be published on Tuesday.

Lovely hubby offered to take some pre-op photos for me….. I think he had been planning a playboy-style photo shoot and might have been kind of disappointed when I scaled it back to a ‘headless’ documentation of my currently perfect melons/coconuts/large grapefruit.

So the photos have been taken (thank goodness I have a photo printer at home so didn’t have to give the photo-lab guys a thrill).

I have also been preparing as much as I can…

I finished up at work on Wednesday (I am taking extended leave) – I was rather tearful saying goodbye to all my lovely work colleagues, not knowing when I will be returning.  I love my job and was excited about the initiatives I was involved in – and find it hard to let go of ownership for things at the best of times.  But, I know the great people who have stepped in to take on my work will be awesome and I am going to be able to completely (or mostly) forget about it and concentrate on my recovery.

I have received lots of lovely, thoughtful gifts, cards and flowers and offers of help – which makes me feel so cared for and supported.  I feel confident that I can call on lots of wonderful people for help if and when it is needed which is such a huge comfort.

One of my gorgeous girlfriends dropped off this ‘little box of sunshine’ this morning which is so adorable!

I have also been and bought ginger capsules (recommended to me for nausea), and have moved all my front opening clothes to the front of my wardrobe.  I see a lot of shirt dresses in my near future (until I get good mobility back in my arm).

I have bought more pyjamas and dressing gowns than was really necessary – but hey, retail therapy is a specialty of mine.

My sister braved the gale force winds to fly in from Nelson yesterday to spend a couple of nights with me, which is wonderful company.  She came with me to visit the Cancer Society then we headed to the Bangalore Polo Club for a pork belly lunch – yes, again.

I hadn’t been in contact with the Cancer Society until now (because I didn’t really want to accept that I was ‘joining that club’)…. but had quite a few friends who had survived cancer telling me they are great and that they have really good resources.

So I went – and was so glad I did.  They were awesome.  The lovely lady on reception explained all their resources to me and I took a look around their library (I wasn’t emotionally ready to even touch the books yet, let alone borrow any).  They made up a bag of all sorts of things to give me including a silky crescent shaped pillow that I can tie over my shoulder that will help my arm not press against my drains/wound, a granny-looking bag that can help carry my drain pouch, a couple of temporary DIY bra pads (in case I need to boost up my flattie until my fillable implant is up to size), and lots of brochures and a practical book.

They also offer counselling, classes, massage, free-parking while you are having treatment at Wellington Hospital, family and friends lounge, wig-subsidies and lots of  other great resources.  So if you have ever donated or collected for the Cancer Society, be sure it is appreciated.

I arrived at the hospital and settled in and was feeling remarkably calm. I wasn’t even uncomfortable having not eaten since 8am

After the dr came and drew all over me with felt pen they wheeled me in my bed down to the operating theatre. A few quiet tears slipped out while they got my anaesthetic sorted out.

Then I was off to sleep and awoke just over two hours later in recovery. I was in a lot of pain and it took about an hour and several doses of good quality drugs to get to a stage where I could go back to my room.

You know those blood pressure cuffs they put on your arm? Well they put two large versions off them on my legs (ankle to knee) and a machine inflated them one leg after another every 15 seconds!  ALL NIGHT!  Not great for sleep.  I didn’t manage to sleep much at all and when they gave me some antibiotics intravenously at 1:30am I got really bad nausea. The lovely nurse talked me through some deep breathing so I didn’t vomit thank goodness.

The cut on my right breast is only about an inch long and was glued, not stitched, so should heal great.

Leftie looks very strange indeed. Kind of flat but with a rippled mostly empty implant under the skin. It is completely numb and I can feel where the lymph nodes were removed under my arm. I have a drain that goes into a plastic hard case thing that is weird. I don’t like looking at that.

I am feeling quite good in myself but had a bit of a cry when the nurse made me get up and have a shower this morning. I wasn’t quite ready for that and it hurt to be moving around.

But it is all good and it is so good to have the mastectomy over. I will keep staying positive and try to get up and moving like the nurse told me to.

Thanks everyone for all your messages and thoughts. I am so lucky to have such amazing support.

x

The girls saying goodbye to me before surgery and me after surgery

Day 1 after surgery (well only about 14 hours after surgery) and the nurse turned up with towels and said “righto, time to get up and have a shower” and I am thinking ‘you have got to be kidding’ but no, she wasn’t. So I had a wee cry and washed off some of the felt pen and pink and tried to not look at the scary parts.

Having just recovered from that trauma, a couple of hours later the physio turned up and said “let’s get you doing some exercises” and I’m thinking ‘OMFG’ but got brave and did them.

The rest of the day went relatively well and I dozed off and on and got up for walks like the nurses suggested.

At bedtime as the nurse emptied my drain bag and flushed my iv line etc she said i’d be going home in the morning. So i had a wee cry and said I didn’t feel ready to go home in the morning.

Consequently, this morning (day 2) my dr said I could stay another night so that was a relief.

Last night I was quite sore and it is weird to be completely numb in my left breast, left underarm and part way down the back of that arm.

I came home from hospital yesterday and felt good (although it was a little daunting leaving behind the security of my little quiet private hospital room where I had cocooned myself).

I had a ton of stuff to bring home so hubby had to take two trips to the car.  It appears I have become a celebrity at the girls’ school and both of them had been bringing in cards, paper flowers, chocolates and teddies and things from all their friends and classmates.  Very lovely and so nice for the girls as I feel they have a lot of support there.

I had an afternoon nap and my Mum made me lunch and dinner while hubby was a fab dad and went to school athletics day, school pickup and swimming lessons.

The girls were glad to have me home, and I was inundated with hugs and chatter.

I was glad that I had bought a special medicine box thingy to put all my pills for the day in as there are so many and they are all taken at different frequencies.  Yesterday I think I took about 13 pills.

I created a huge throne of pillows in my bed then lay back for the night but had a really hard time sleeping.  But it is probably a good thing that the dr didn’t prescribe sleeping pills as I know they can be very addictive.  I’m sure sleep will come eventually.

When I did sleep, I dreamt I was walking through a park (in search of marshmallows) and met up with Jonah Lomu – he was really nice to me because I had a drain hanging out of me.  Even though his kidney failure and my breast cancer have little in common I guess I must subconsiously feel like he and I are kindred buddies now.  Lol.

When I didn’t sleep, I listened to podcasts – a bit of Hamish and Andy comedy, and a bit of David Attenborough and BBC Science in Action and Discovery. So I have at least learnt a lot more about the thinking skills of crows.

I am looking forward to being a few weeks down the track with my drains out and my boob inflated.  That will be awesome.

My Blog has now had more than 1200 views.  Amazing!

Today I went back to see the plastic surgeon.  He said I am healing well but unfortunately my drains aren’t ready to come out yet – I will go to see him again Thursday so hopefully by then they can come out as they are really annoying and make sleeping uncomfortable.

I have been feeling really good emotionally – and am working hard to keep getting up and moving and doing things.  I even managed to help cook dinner last night.

In an effort to ensure this blog isn’t shallow and just glosses over the less than glamourous stuff, I will share more information than I would usually…. So…. the general anaesthetic, along with all the drugs I have been taking, caused bad constipation and in an attempt to remedy this, I had a lot of kiwifruit and kiwicrush (drink), which did help, but also caused hives.  And I now have haemmorhoids from the constipation too.  So will be trying some ‘Metamucil’ fibre powder etc that the dr recommended.  But, if I let a sore bottom and itchy hives get me down I’m going to have a pretty difficult journey so I’m keeping my spirits up.

The Melbourne Cup is on tomorrow so I have organised a ‘non-money’ sweepstake with friends and family from across the country (and Australia) so that we can all have a horse to back (which always makes watching the race more fun).  My girls are decorating their race-day hats to wear while we watch the race on tv. Good luck to my horse, number 18 (‘Niwot’).

It is funny that it was so hard to leave work and yet now, I am so focused on recovery that work isn’t even on the radar.  I still hope I might make it back to work part-time in December, but will see how things go.

I have had a lot more discomfort/pain yesterday and today – which I just take as a good sign that I am healing.  I just do what Lance Armstrong would do, and take a few more drugs.  : )

I will update my blog again on Wednesday afternoon after I have my midday results meeting with the Breast Specialist.  Then I may know more about whether they found any cancer in my lymph nodes and what other treatment I might require.  It is a weird thing, I want to know but don’t want to know.

I went and met with my specialist today, and the results from my mastectomy were great – much better than the specialist expected – they got all the cancer and there was none in my lymph nodes and I don’t need chemotherapy or radiotherapy.  I might not even need the Tamoxifen (Estrogen reducing drugs).

I feel ten times lighter.

It is like the doctor has given me back my life (or at least the year of awful treatment I thought I might have to have (and side effects)).

Now I just need to get my drains out and heal from the mastectomy and then get the expander inflated and then in six months or so, have my second surgery to put in the permanant implant.  But all of that sounds easy compared to chemo etc.

I will have constant checkups of both breasts every six months for five years with the specialist to keep making sure things are still ok.

A huge thanks to everyone who has supported me and helped me get through all of this so positively.

xx

Here I am with my girls and Mum watching the Melbourne Cup yesterday:

After yesterday’s euphoria of learning that I won’t need chemotherapy or radiotherapy, I ended up having a rather hard afternoon.

About 3pm I noticed one of my drain sites was bleeding and so I headed back to the plastic surgeon and the nurse removed my tapes and dressings and cleaned it all and redid everything.  Unfortunately that pulled a bit and i arrived back home in a fair bit of pain and discomfort and had a massive headache (probably releasing all the stress I had unknowingly built up waiting for my results).  So I dosed up on pain medication and crawled into bed.

A few days ago I had developed mouth ulcers and sore tongue, probably from the cocktail of medications I have been on – and finally that has improved and now I have developed more hives – they are on both legs and one arm now.  After a bit of research I think they may be from the Tramadol (pain medication).  It just seems to be one thing after another huh.  I will just have to stick to paracetamol until I can talk to the dr about it tomorrow.

A friend loaned me a fabulous book called ‘Listening is an act of love’ by Dave Isay.  Such a lovely book full of positive short stories from people’s real lives.  In it there was a quote I liked:

I am still determined to be cheerful and happy in whatever situation I may be, for I have also learned from experience that the greater part of our happiness or misery depends upon our disposition and not upon our circumstances. – Martha Washington

Ding Dong the drains are gone!  What a relief!  Today the plastic surgeon said I am healing well and my drains were removed.  It has been so awkward having drains in and having the vacuum pump thingy in a bag hanging off me for two weeks. I still have dressings and tape but wow – it is so much better.

The main issue I have at the moment is the nerve damage/irritation which is a side effect of the axillary dissection (lymph node removal) – it is causing an awful painful tingling sensation up the back of my left arm and all around the edges of my armpit (in the actual armpit itself is completely numb).  It is a hard feeling to describe but if you have ever had a local anaesthetic from the dentist, just as it is wearing off you get a kind of painful hot tingling feeling.  That is what it feels like constantly for me. Another example is kind of how your skin feels all tingly sore if you have the flu. It hurts to have clothing or anything brush against all of that skin and I even try to put a pillow in between my arm and body at night so the skin doesn’t touch.  Hubby said he is happy to turn the heat pump on high and have me walk around topless – I’m not sure if that suggestion was more for my benefit or his.  🙂

This should subside but it will take weeks/months, so in the meantime I might have to try some medication to help reduce the sensitivity as I didn’t get to sleep until midnight last night and it is driving me bonkers.

Another piece of news from the plastic surgeon today: in one week, they will do my first weekly ‘inflation’ – putting a needle through my breast skin into the valve in my expander implant and injecting some saline into it – the first step towards getting leftie back to the same size as rightie.  Yah!  I am hoping I won’t need too many inflations to get up to size.

This is what the expander implant is like – you can see how the needle can go into the special valve to inflate it without puncturing the implant:

Also, the plastic surgeon said that because I don’t need chemotherapy or radiotherapy, I will probably be able to have my second surgery (replacing the expander implant with a permanant silicone implant) in February!  That’s only three months away!  Wow – imagine if I can have all this done and be recovered (aside from the long-term side-effects) by March!  Such good news!

I asked the girls if they wanted to see my ‘flat boob’ at the end of last week.  Miss 8 said “I thought you’d never ask, I’ve been wondering what it looks like” and Miss 6 was a little sad that my nipple was droopy (as it was ‘cored out’ as part of the mastectomy) –  but apart from that I think they were glad to see it and it helps them to understand why they have to be so gentle around that side of me.  I explained to them that it is going to look so much better when it is inflated (and even better again when the permanant implant is in) – and Miss 6 was reassured that my nipple will look better too (as was hubby when the plastic surgeon reassured him!).

I feel so lucky that I have had such a ‘low grade’ and easily treatable breast cancer.

They call the traditional cancer treatments ‘Cut, Poison and Burn’ (Surgery, Chemo and Radiotherapy).  I am so very relieved that I only had to endure one of the three and that I am already on the road to recovery.

My heart goes out to all the women who are having a more difficult journey than me, and I hope they manage to stay strong and positive (as best they can).

I no longer have a flattie!  At 5pm tonight the plastic surgeon did the first inflation of my temporary expander implant.  He used a magnet a bit like a stud finder to locate the valve in the implant then inserted a needle straight through the skin (since it is numb), and injected several syringes of saline into it (80mls in all).  I feel like a Cyborg!  The implant already contained some saline, but now it is fuller and it won’t be as noticeably flat as before (although the bottom of the implant still looks quite unnaturally square – so it will be good when it is eventually replaced by the permanant implant).

I shut my eyes while the needle was inserted but then watched as the saline went in.  Hubby was there too and thought it looked quite incredible.  I was glad it was a painless procedure and it is definately a step towards having a much more normal shape and being able to wear a wider range of clothing…. I never realised how tight all my clothing was before this!

I will be going back for further inflations once a week over the next few weeks until leftie is the same size as rightie.

The painful tingling in my left arm has still been annoying, but I am taking amitriptyline to try to help with that.  It kind of knocks me out though (so doubles as a bed-time sedative).  Originally the doctor said to take it twice a day – but I was zonked when I took it during the day!

My arm is also becoming more difficult to straighten as the tissue scars and pulls where the lymph nodes were removed etc – so I am having to double my efforts on the physio exercises.

The permanantly numb left underarm and painful tingling surrounding skin have made shaving under that arm too dangerous, and I was starting to look like I was a nature-loving hippy type, so took a friend’s suggestion and bought Veet hair removal cream – it is miracle stuff.  And three minutes later – I now have two hairfree underarms again!

And shock news – I haven’t had any V energy drink in a month! I figured this might be the best opportunity to try to give up that habit (while I have had plenty of other artificial substances onboard) – although I can’t promise I won’t fall off that wagon!

Things are really starting to get back to normal now – I am driving again – and will head back to work part-time next week.  It will be great to get back into it until Christmas, then I will take time off over the Christmas School Holidays and through my February operation, heading back to work again in March.

Hubby is heading away on his work trip to New York next week but I feel totally able to cope now, so that is great (plus I have written up a nice shopping list for him)!

My specialist has presented my case at the regular review meetings he has with the oncology and radiology teams.  They agreed with his decision that I will not benefit from chemo or radiotherapy.  The recommendation is that I start taking Tamoxifen.

My cancer was ‘estrogen receptor positive’, which means estrogen helped to make it grow. Hormone-sensitive breast cancer cells (like I had) have proteins called receptors that the estrogen attach to. When oestrogen comes into contact with the receptors, it fits into them and stimulates the cancer cells to divide so that the tumour grows. Tamoxifen fits into the oestrogen receptor and blocks oestrogen from reaching the cancer cells. This means the cancer either grows more slowly or stops growing altogether.  This will hopefully help to prevent me developing further breast cancers.

As long as I have no major side effects, I will take tamoxifen once a day for the next five years.

I have also now got the results from another test on my cancerous tumour, it is the ‘KI67’ test which checks how aggressive or fast growing/spreading a cancer is.  Mine came out at a low 9% (aggressive ones are 60-95%).  So that is great and also contributed to the decision for no chemo.

The lump in my right breast was a fibroid adenoma which is a benign lump (yah).

I also have a date pencilled in for my next surgery (to remove the expander implant and replace it with a permanent implant) – Tuesday, February 12th (in the morning this time).

I have finally gotten down to just taking amitriptyline (for the nerve pain) and the occassional pain killer – which is great considering I had 11 different medications to start with:

My next appointment is Thursday – for another inflation!

I started back at work this week – just 9-2 Monday to Wednesday.  I really love my job and it was great to get back to help out there, but by the end of Wednesday I was really exhausted.  Hubby is away in New York now for two weeks too, so solo-parenting on my first week back took it’s toll and I was a bit of a blubbering mess by last night.

It wasn’t helped by the fact that I realised I am suffering from ‘cording’ or ‘axillary web syndrome’.  Over the last couple of weeks, the mobility in my left arm has declined and I can’t raise it up high or stretch it out anymore.  It really pulls (in a painful way).  Then last night I noticed a ‘cord’ in my inner elbow.  There hasn’t been much research done on why cording happens or how it resolves, but it is very common for women who have had their lymph nodes removed like I have, and it usually goes away after about three months.  I just have to keep exercising it and massaging it.  After researching it online, I saw lots of photos of women with massive cording leading from their armpit, and I got up and looked at mine in the mirror and said…. actually what I said isn’t printable….. but it was along the lines of “OMFG” – I have a massive cord running from my armpit down my left arm and that is what is causing the tightening all down that arm.  My plastic surgeon said sometimes a doctor or nurse can massage it intensely until the cord snaps to release it, but I have decided I’d rather not try that option!

Here is the little cord in my inner elbow which I first saw, and the much larger one leading out from my armpit.  A little hard to see in photos but crikey, they are painfully tight (but there is no pain if  that arm is relaxed and I am not stretching or reaching with it).

 

Today I went for another inflation – one of my lovely girlfriends took me since the hubby is away.  The inflation went well but the nurse made me almost jump off the bed when she ripped the tape off my wound again to re-dress it.

I also got my Tamoxifen prescription and when I went to fill it at the chemist they gave me the information sheet with all the possible side-effects and list of things you can’t take with it etc…. including grapefruit juice (which I had expected as that also interacts with contraceptive pills etc), but licorice??!!! I said “What?  no licorice!!!! for five years??” (I am a huge licorice allsort fan).  Bummer.  I suggested I will just have to eat all my massive stash of licorice allsorts tonight.  (That would help cure any constipation!!) – and I will just have to substitute it with chocolate and marshmallows.

The Tamoxifen information sheet also said it is banned in sport, so you won’t be seeing me competing at the 2016 Olympics.  Sorry to disappoint.

My sister and niece arrived tonight to stay for a few nights so it is lovely to have them here.

PS: I’ve still had no V – feeling quite proud of myself.  Lol

Yesterday I went for another inflation – 50ml this time.

Without my top on it looks like both breasts are kind of the same size, but the left one is a squarer shape and the nipple is way higher on that side. It looks a bit frankensteinish. With a bra on, you can see that the top of the left breast still needs more filling to plump it up to size. I’m not sure if that will be acheived with the expander implant.

While I was there, I asked the plastic surgeon about my February surgery. I had kind of thought that it would require a smaller cut and was hoping that I wouldn’t have to have drains etc, but no, the surgeon said that he will cut the whole length of the scar I have just healed and then after surgery I will have drains and an overnight stay in hospital.

It was a bit depressing but at least the drains won’t be in as long as last time (as I won’t have lymphatic fluid to drain this time).  And, no matter what I face at the moment, I always think ‘At least I don’t have to have chemo’.

This is a diagram of the cuts I got from surgery number 1 (and the long red line is the one that will be re-cut in February).

On a happier note, the amitriptyline has really helped with the nerve pain I was experiencing in my left arm – it is just a dull strange feeling now rather than painful to touch.  The cording is still there, but I am managing to get relatively good mobility just by continuing to use my arm and do some simple arm swinging exercises etc.

I still can’t sleep on my left side yet – and I have a curved thin satin pillow that the Cancer Society gave me that I have under my arm while I sleep that helps make things more comfortable.

It is funny being back at work and feeling like things are ‘normal’ again (until I get home and undress and go ‘oh’).

I am looking forward to getting surgery number 2 out of the way so I can move forward with all this behind me. But then just as surgery number 2 is over, I guess it will be time for my first 6 monthly check up…

Christmas is fast approaching and yesterday I had my last day of work for the year. I will be doing a few days in January then won’t be back again until March!

I had another inflation yesterday lunchtime – so my boob is feeling quite tight. It is strange that the bottom half of my breast is a funny colour (red-ish) – the doctor even pointed it out to the nurse for her to take a look. He said it is because the skin is stretched thin over the expander implant and will be developing capsule scarring which is likely causing the redness. The skin on the top half of the breast is buffered by the pectoral muscle.

I also have one of the internal stitches poking the skin out at one point, which makes a weird raised bump. The redness, along with the bump, and the fact that my left nipple is now about an inch higher than my right nipple makes things look awfully interesting. The dr is hoping to reposition the nipple with the placement of the permanant implant at my next surgery.

My cording is still restricting movement in my left arm, and again the doctor said I could get it massaged until it ‘snaps’, but I said ‘there’s no way I’m doing that while I’m conscious (or without at least six gin and tonics on-board!).

As I said in my lymphedema post, it is now recommended that I wear a compression sleeve when flying (to reduce the risk of developing lymphedema) – so I went to the Cancer Society today to borrow a sleeve for our flight to Auckland (in early January). Once again, the Cancer Society staff were lovely – and dressed in Christmas costumes today with a basket of free marshmallows in reception! The nurse there measured my arm and tried a couple of sleeves on me before finding one suitably (freakishly) tight! I will end up buying a sleeve but this loaner one will help me to judge correct sizing etc. Here is a picture of me trying on the sleeve:

Before I had cancer, if I saw someone with a sleeve like this, I would’ve thought they were a burns victim. I see online that you can get more creative compression sleeves – perhaps I could get a full arm tattoo one – lol!

I am looking forward to Christmas and the festive season (lots of baked ham and bubbly!). Thank you to everyone who has helped me get through these last few months with all your amazing support, cards, emails, flowers, baking, gifts and wine! I feel very blessed. Happy Holidays!

Having cancer is such a strange thing. I have days when it invades my thoughts all day, and others when it hardly features at all. Now that it is the holidays, and my brain has more ‘downtime’ to wander, all sorts of things keep bustling around in my head. Thinking about my upcoming surgery, thinking about my first six-monthly check up with the breast specialist (which will be due while I am recovering from the surgery), thinking ‘gosh, I hope the cancer doesn’t come back’, thinking how strange it is to be a cancer patient without undergoing chemotherapy or radiotherapy. (I am really glad that I don’t have to go through those treatments, but part of my brain thinks that it is odd to not be doing that part of the ‘cancer recovery process’).

I am also not sleeping well – possibly due to a combination of four things:

1) the above-mentioned brain chatter,

2) coming off amitriptyline – having gotten on top of the nerve pain in my arm I have stopped taking amitriptyline (after slowly weaning myself off it),

3) taking Tamoxifen (apparantly it can cause insomnia)

4) the cording in my arm – this has worsened and there now appears to be another cord running the length of my arm – which is uncomfortable and restricting movement.

Last night I didnt manage to get to sleep until after 1am even though I had tried to wear myself out with housework and gardening during the day.

Tomorrow is New Year’s Eve – and I’m not one for making resolutions, but I guess after the last few months I am determined to slow down, let go, appreciate the small things, be kinder to myself and have more fun. I love this quote:

Today I had my pre-op meeting with the plastic surgeon.

He did a lot of measurements and drawings on me with felt pen and planned out what the surgery will entail.

The current expander is a bit low, and he will have to expand the cavity upwards a bit for the new implant. Unfortunately this probably won’t totally fix my ‘one nipple is way higher than the other’ issue, as he advised I am suffering from ‘nipple drift’. This means the skin above my nipple has contracted and the nipple has been slowly drifting upwards (and slightly inwards). He will lower it as much as he can with the placement of the new implant and releasing the scar tissue at the top of the breast, but he said he can’t imagine that it will get back to the normal position. I said to him just to try his best and that is all we can expect.

The numbness and hardness of leftie is still really freaky – and hubby has realised he can touch it when I am asleep and I can’t feel it – so I will have to sleep with one eye open!

I am really exhausted at the moment and had a bit of a cry this morning – I am still not sleeping well from the medication, and I am probably trying to do a bit too much – with juggling work and school holidays – but I know that I don’t have much of a chance to get work done before I will need to take time off forthe surgery so I want to do what I can now.

Before surgery, we are heading to Hawaii for a week for some rest and relaxation (and shopping!) – so I will be braving the beach in my bikini – scars and all. At least with the expander in most people won’t notice anything (they may just think I’ve had a bad boob job!).

This is where we will be staying for part of our trip – it looks heavenly:

Prior to surgery two we have taken a family holiday to Hawaii for some rest and relaxation (and shopping). I was a bit nervous that the metal port in my expander implant might set off the metal detectors at the airport, but luckily it didn’t.

It has been nice to relax in the warmth and brave the beach in my bikini. I don’t mind that there is a big scar all down one side, but kind of wished I could tell everyone around why it is there.

There has also been some pre-op retail therapy going on. It is now only a week until surgery and I am quite nervous about having to go through the pain and recovery, but these new shoes and handbags will help…

I am all gowned up ready for my reconstruction surgery. I am feeling quite nervous now and will be glad when it is over.

It will be great to have a more normal boob back again.

And I’m happy to learn it is roast dinner night at the hospital tonight. I will look forward to that.

My reconstruction is all done! I did really well – last time I had a few tears when they were getting my anaesthetic organised but this time I was fine.

My surgery took one and a half hours then I had an hour in recovery getting my pain down from an 8 to a 2 before heading back to my room.

I am in the same hospital room as last time so that is comforting.

I have the crazy leg compression sleeves on that are taking turns inflating and deflating every 10 seconds or so. That will make for a long night. I also have a drain in that will be in for a few days.

I am feeling great and have just been drifting in and out of sleep. Each time I wake thinking ‘that must’ve been a good sleep’ only to find it was only about 3-5 minutes.

I can already see leftie looks HEAPS better and the surgeon said it all went well. My nipple is down in a much more sensible position but will have to wait until I can stand in front of a mirror to see how it looks compared to rightie.

Thanks everyone for your amazing support.

x

Day two recovering at home and I feel like my chest has been trampled by a herd of wilderbeest.

It is very hard to get into a comfortable position – so I am mostly sleeping sitting up and taking all the drugs available to me.

I am also bored – but too tired to want to do anything – so just trying to rest (which is something I am not very good at).

On a positive note, leftie looks amazing. It is a shame it would be inappropriate for me to post x-rated before and after pictures on here, as I would love to share the fantastic job the surgeon did – so you’ll just have to use your imagination and trust me that things are looking great.

On Monday I head back to the plastic surgeon to have my drain removed and he said I will then need to wear underwire bras 24 hours a day for a few weeks. Sleeping with a bra on will be rather annoying but it will help to keep the implant in place until the scarring has formed around it.

I am looking forward to getting past this recovery – I am really happy with how far I have already come and know that it won’t be long until I am back into my normal, wonderful life.

It is six days now since my reconstruction surgery. I am tired, but feeling pretty good.

A few days after coming home I developed some nasty blistering on my belly from the plastic dressing holding my drain in place. Then Saturday night my drain blocked so I was back to the hospital on Sunday to have it flushed and then finally today I got my drain removed! It is so good to not have a tube stitched into my side and a vacuum pump bag to have to carry around! I feel like I can get out and about more now (although I am too tired to actually do it). Miss 6 had commented that it looked like some of my brains were going through my drain tube (which might explain why I had trouble doing a sudoku yesterday).

I did make it out on Saturday night – we went to a family friend’s 80th. I wore a full-skirted dress that buttoned all the way down the front and managed to hide my drain bag pretty well – although I am guessing that amongst the octogenarian crowd at the rest home venue I probably wasn’t the only one sporting some sort of medical bag. It was nice to get out of the house and eat a lot of yummy food – but I was rather exhausted on Sunday and didn’t get out of bed until after lunch. Thank goodness Mum was here to take the kids out for the day.

The plastic surgeon said today that everything is looking good and that all the tape he has criss-crossing all over leftie is trying to help keep pulling that nipple down. I will be back to see him again on Thursday – and imagine there won’t be many more trips to his office after that. I am definately reaching the light at the end of the tunnel.

I got my date for my next breast cancer specialist checkup – Friday May 3rd. So that is good – I thought it was going to be next month. Rightie will breathe a sigh of relief again after that checkup is out of the way!

I have just returned from today’s followup with my surgeon. The nurse ripped off masses of tape that was firmly stuck all over leftie. It hurt so much I almost broke into spontaneous tourette-style cursing. The nurse agreed that my skin did seem to stick uncannily to the tape even after she tried to break down the glue with some acetone. I told the doctor that she was trying to kill me and that I was lamenting not taking tramadol before I left home. But, I survived, and after trimming the external knots holding my internal stitches in place, the nurse retaped all over the lower half of my breast so she will have something to tear off me again next week.

On a positive note, everything is healing well, and I even managed to walk the girls to school this morning and drive the car this afternoon. I head back to work on Monday so that will help to get things back to normality pretty quickly.

Last Thursday I had another follow-up with my surgeon. Once again all the tape was removed from leftie and then the surgeon retaped it – strapping the bottom half of the breast in an attempt to stop the dreaded nipple drift. And…. the amazing news – he said he doesn’t need to see me for three months! Having been to the hospital between one and three times a week for the last six months it is quite surreal to be told I am ‘free to roam on my own’ for so long. He gave me a big roll of tape and told me to keep strapping my boob in the meantime.

I have noticed some stiffness creeping into my underarm / upper arm area again so have to start exercising that again. Leading up to my surgery I managed to breakdown most of the cording that was restricting that arm. A work colleague who is also going through breast cancer treatment had bad cording and she had said to me that she only managed to get rid of it when she painted a bedroom in their house (the repetitive stretching of her arm did the trick). So I thought, although I have no painting to do, I can still do that movement in an attempt to deal to my cording…. and after a few weeks of waving my arm up and down like a lunatic, I noticed a huge difference. Since surgery though, I haven’t really been waving so much so will have to get back onto that now.

I am really tired at the moment – a combination of being back at work, normal mother/housewife duties, and lack of sleep from my medication. But, overall, I think things are pretty great really. In the last six months I have been through so much, but now things are really starting to get back to normal. I know for some people, having cancer inspires them to make a lot of major life changes, but, to be honest, my life was pretty darned good before all of this so there isn’t much I would want to change.

If I had a dollar for all the healthy eating and supplement advice I had been given in the last six months, I would be able to buy a couple of dozen cans of coke and a big slab of chocolate – Lol. But I really don’t feel the need to go all new-age or start filling my day with popping vitamins and eating healthy things. Surprisingly though, I’m still managing to not slip back into my V energy drink habit. A couple of weeks ago I went to an osteopath recommended to me by a friend, and probably astonished the poor guy with my blaise attitude towards diet and supplements. I did take on his advice to drink more water and started taking zinc and magnesium tablets.

Well, my busy life continues so I had better dash away and tackle the next few tasks on my to do list.

Here is a great quote I saw the other day:

Burn the candles, use the nice sheets, wear the fancy lingerie. Don’t save it for a special occasion. Today is special.

I am four months into my five-year course of Tamoxifen. I take it at bedtime as I am less likely to forget it then. Unfortuntately, since starting it, I have been suffering from insomia and night sweats. I am usually the sort of girl who used to go to bed wearing a couple of layers of nightwear, an extra blanket on top of the duvet, and sometimes even socks. Now, however, I am in the shortest, skimpiest nightie and from 10pm onwards I usually have to lie outside the sheets. (Hubby thinks it is a great side effect!).

In the early hours of this morning I was dripping with sweat and had to get a towel to dry off. Madness. The doctor said if it doesn’t settle in the next few months he can prescribe something non-hormone-related to help with this. The insomnia is also pretty annoying – preventing me from getting to sleep until almost midnight every night, and when you are waking with night sweats then getting up at 6:30 every morning, exhaustion is starting to compound. But I am trying to keep my sense of humour…

I decided to try taking the tamoxifen in the morning as some people find this helps. Not so for me. Taking it in the morning gave me really bad nausea during the day (and I still had the insomia and night sweats). So, I am back to taking it at bedtime. Hopefully, in a few months my body will adjust to the changes in estrogen levels and these side effect will abate.

PS: I love these t-shirts I found online:

On Friday night I went out on the town to help a couple of friends from work (in their mid-20’s) celebrate their birthdays. It was all cocktails, shots and champagne – and after being pre-warned to ‘wear your good knickers…. a pair you don’t mind everyone seeing when you are face-down arse-up on the dance floor’ – I was rather concerned that I was going to be the lame old lady in the pack. But, I surprised myself by keeping up with the drinking, lasting the night and not being hungover the next day. (I highly recommend taking ibuprofen before bed after a night of drinking).

This week my nightsweats have actually been a bit better (fingers crossed, touch wood). I was planning to start taking flaxseed oil for it as a friend who has the same doctors as me said one of our doctors recommended it to her – but I hadn’t found time to get any. Hopefully the improvement is a sign that my body is getting used to the Tamoxifen.

I am still incredibly tired, but that is partly due to my inability to slow down. I feel a bit like this (but perhaps without the crop-top):

The tightness I had started feeling in my left arm and armpit was the cording returning. So I am trying to break that down again. I might have to break with tradition and clean the windows to stretch the cording out – a recommendation from another friend undergoing cancer treatment (although i suspect it originated from a husband somewhere – “cleaning the windows would be good for that… vacuuming might also do the trick… dusting perhaps?”).

My breast is doing pretty well and looks normal when I have clothes on which is fantastic – but the scarring is quite hard and and gets a bit sore at times where my underwire pushes on it. I have another month and a half of having to tape my breast and wear a bra to bed – so it will be good to reach that milestone and move on from this stage.

I received my annual policy renewal letter from my health insurance provider the other day – and found that I am not eligible for a low-claims discount this year (no surprises there!) – in just over two years, I have claimed $33,067.80! Health insurance might seem expensive, but it only takes one major event to make it worth having.

Since my surgery I have felt quite tender down my left side – a bit like feeling bruised. I have only just started being able to sleep on that side, but usually only for a short amount of time. I was surprised that the pain has lasted this long – but last night I realised why: I have more cording (axillary web syndrome) running down my side. If I bend over to the right with my arm over my head (like I am in an 80’s jazzercise class), I can see the cord running down over my ribs. I guess more radical stretching is required.

When researching the cording, I came across an article that I could relate to. It was saying that even after your core treatment is over, and you are labelled ‘a survivor’, it doesn’t really mean you can simply move on and continue life as if nothing happened. During treatment, you put all your strength and emotional energy into getting to that finish line, but once you are over it, you are kind of left shell-shocked. You don’t simply stop having had cancer once treatment is over, and sometimes it is hard to move on from having had something consuming your thoughts and energy for so long. Cancer veterans live daily with their cancer – in the scars in our bodies, the memories of the people who were kind when we needed help, and the way we can never take for granted what a gift it is to have the ability to make plans. I am not meaning this in a negative or depressed way – it is all just part of the journey, and one which I am not allowing to get me down.

It is only three weeks now until I will have my first official follow up checkup. I am really looking forward to getting that out of the way.

Oh, and I have a confession to make – as much as I would like you all to think that I have iron willpower, I guess honesty is the best policy… I have fallen off the energy drink wagon a few times lately. A V here, a cranberry Red Bull there…. just to help me through the day after my nights of insomnia. It could be worse – I could be cracking into my stockpile of mastectomy painkillers. So if you see me with a little green can in my hand, you can consider it a good choice on my part rather than a bad one.

Today I had my first six monthly oncology check up. I felt like I was going to get the all clear, but was still nervous as it was only six months ago that I thought the same thing and got the cancer diagnosis!

It was strange getting my gear off again to flash my boobs around – I hadn’t seen a doctor for weeks.

The doctor ultrasounded both breasts and underarm lymph areas. He had me worried for a moment as he was all chatty through until the second arm pit then he went all quiet and kept zooming in on one area and changing the view on the screen and things. Then he said “All good”. Phew.

He could feel a thrombosed vein up by the end of my scar that is causing that area to be quite tender.

Apparantly the doctor is very confident in my prognosis and said that as long as things are all clear at my next six month checkup and mammogram (on November 1st), he is happy to move me to 12 month checkups from then on. Happy days!

The doctor also gave me a bit of a lecture about making sure I take time out for myself every week. He said it is important to lower stress levels. Hmmmmmm – that is something for me to think about…. hobbies, special interests? Besides retail therapy and wine with friends…. I have been doing pilates at home (it is too hard to attend a class at the moment as there are too many of the exercises I can’t do due to my breast/arm and dicky hip and old-lady knee) – but apart from that, I pretty much fully occupy my time with work, mum duties and completing tasks on my never ending to-do list.

I think the night sweats have improved a bit but are still quite annoying, and sleep is still hard to come by. A work colleagues’s wife (who was recently diagnosed with breast cancer too) recommended melatonin (a natural sleep remedy), so my lovely hubby (who is currently in New York) is bringing some home for me to try. They have so many options in the States (and things like that are so much cheaper than here in New Zealand).

Now that my core treatment is over, and I have had my six-month ‘two thumbs (breasts) up’, it is probably a logical point for me to finish my blog entries for now. There is not much new to report and I’d rather not bore you by raving on about the same things over and over.

I will post a final entry in the next couple of weeks – summarising my advice for anyone else tackling this journey (that will make it easier for people to get key useful information without having to read the whole blog).

This blog has had over 3000 views and I am humbled to think so many people have been interested to hear how I am going and read what I have to say. Who knows, when I figure out what my hobby/special interest is going to be, there may be another blog in the making!

The breast cancer journey is so different for everyone who undertakes it. All the amazing women I know who have been through this, or are going through it now, have had different experiences with their diagnosis, treatment and side-effects from medication or surgery. I’m by no means an expert and haven’t had any experience with chemotherapy or radiotherapy – but maybe some of the things I have learnt along the way can help make someone else’s journey a little easier, so I have tried to summarise some here:

Doctor’s visits
– If you don’t get given them, ask for copies of your results (needle biospy, core biopsy, post-surgery cystology etc) as even though the doctor (or their nurse) will summarise the key facts for you, you may want to refer back to them later to get more detail.
– Take notes in your appointments, as sometimes your brain is too overwhelmed to remember everything you get told – get a notebook / diary / organiser to store all your notes in one place (and I also bought a plastic document pouch thing to store all my letters, test results etc in.

Anxiety
– Try to not let your brain race ahead – I know this is a tough one, but you need to deal with things one step at a time and not try to guess what your treatment options or side effects will be. One step at a time is much more manageable.
– If you need to, see your GP about taking some anti-anxiety medication short-term just to help get you through.
– Avoid situations and people that add to your anxiety. Sometimes people think they are helping when they are not, and you need to focus your energy on your recovery by putting some distance between you and any avoidable stress. Surround yourself with positive people.

Cancer Society
– The New Zealand Cancer Society is amazing. I didn’t need to use them much, but they were excellent when I did.
– If you don’t really feel ready to get involved with the Cancer Society, I would recommend you to at least pop in to check out their resources so that you will know what is on offer for when you do need something. Luckily I went to see them a few days before my surgery and got a couple of things that really helped me: a silky pillow that loops under your armpit and really helps keep your arm away from your side after surgery (I used it when sleeping), and a drain bag (which was brilliant for carrying around my annoying post-surgery drain vac). The Cancer Society also loaned, and then sold, me a compression sleeve which helps reduce my lymphedema risk when flying long-distance.

Surgery
– When I had my mastectomy and reconstruction surgeries, I found the most comfortable thing to wear afterwards was a nightshirt that was a few sizes too big. Buttons down the front help with getting it on and off (and provide easy access for medical professionals who want to look and poke).

Nerve-pain in Arm
– If you have lymph nodes removed, this usually causes damage to the nerves in the arm. This can cause numbness, painful tingling and an almost burning sensation. Mine continued for months and is still not completely gone. If it is too annoying and persistent, talk to your doctor as mine prescribed me Amitriptyline. It is commonly used as an antidepressant, but also works well at blocking nerve pain. I took it for a while until the nerve pain improved. It does cause sleepiness, a fuzzy-brain, and makes it hard to get up in the morning, but after a while your body does adjust and then it doesn’t knock you out nearly as much.

Insomnia and night sweats
– If you aren’t taking medications that help with sleep or cause drowsiness, you will likely suffer some insomnia as a result of your treatment or the stress of thinking about what you are going through. Some of the treatments can also cause nightsweats (such as the Tamoxifen I am on for five years) which interrupts sleep. Flaxseed oil or evening primrose oil helps reduce nightsweats and I have had good results using melatonin to help with insomnia (although this is readily available over the counter in the USA, I believe it is a prescription medicine in New Zealand).

Cording / Axillary Web Syndrome
– Lymph node removal (and breast surgery) can cause axillary web syndrome (or cording). Not everyone get it, but I did. It is thought that the cause is the scarring and hardening of blood vessels, lymph vessels or nerves and leads to string-like cords to run under the skin restricting movement. The first symptom is usually feeling your arm movements are becoming more restrictive and it becomes painful to fully extend your arm. They can run out from your armpit, down under the skin through the inner elbow to the wrist, and even down your chest wall over your ribs. They can be painful to stretch or touch. They do improve with time – but can take months to go away. I recommend stretching them as much as you can – waving your arm up and down, washing windows, painting, that kind of action, and rubbing your fingers along the cords to stretch them. Some people get physiotherapy for cording, but I just exercised through it at my own pace/pain tolerance.

Constipation
– Boy oh boy there are a lot of medications involved when you are undergoing cancer treatment. A lot of them, including general anaesthetics for surgery, can cause constipation. Definately take as much medication as you need to not be in pain etc, but I recommend weaning off it as soon as you are able to (within doctor’s recommendations), and after surgery, if your doctor says it is ok for you, Coloxyl (which you can get over the counter at the chemist) is a great thing to take to prevent / cure constipation. I wish I had started taking this the day after my mastectomy – it would’ve saved me almost passing out on the toilet! Other options are kiwi-crush (which I tried) and glycerine suppositories.

Medication
– If you have to take a lot of medications, you might be best to write up a chart to ensure you take them all at the required times – or buy one of those compartmentalised plastic boxes where you put tablets in a slot for each time of the day.
– Remember to check if medications need to be taken with or without food or water – and if bedtime is recommended. If medicines have strong side effects you could also check with your dr about options – mine suggested cutting one of my medicine tablets in half and taking half in the morning and half at night to help with side effects.

Communication
– As soon as I was diagnosed I setup this blog. I have found it to be a fantastic way to keep all of my family, friends, work colleagues and others up to date with my journey and my recovery. I have often re-read many of my posts just to process things and have found it to be very carthartic. It was so much easier than having to email/phone or facebook spam everyone. Of course I still come across people who either haven’t heard about my diagnosis or who are surprised I still have my hair (because they heard I had cancer but hadn’t heard that I didn’t need chemo), but I don’t have to repeat my story too often. I am planning to use blog2print.com to print my blog in book format to keep as a record of my journey – particularly for my two daughters.

Staying Positive
My final advice, is about attitude…. everyone says it, but I really believe it – A positive attitude will make things so much easier – for you and those around you.

Just take one step at a time.
x