Now available as an ebook

After much editing and reworking of images, I have published this blog as an ebook titled ‘An Unexpected Speed Bump’.

It is available in the Amazon Online Store and can be downloaded to your Kindle.  If you don’t have a Kindle, you can install the Free Kindle App on your iPad, Tablet or computer.

This provides a much easier way to read the contents in chronological order.

Here is a link to the book on Amazon: An Unexpected Speed Bump by Shelly Blackley

SpeedBumpCoverFinal

My advice to others

Advice
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

First oncology check up

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.

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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!

thestorm

The post-‘treatment’ journey continues…

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.

jazzercise

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.

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Keeping up, keeping busy, keeping going

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):
SmartBusyWoman

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.

Insomnia vs Nausea

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 everynight, 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…

HotFlashes

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:
yestheyarefaketshirt

Life is good

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.

quitter

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.

Tape

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.

tape

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.

Light at the end of the tunnel

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!

Recovering at home

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

wildebeest

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.

itsagooddaytobehappy