hermyleen_my ex cancer

living with MBC

Losing my hair again

I think the whole experience of losing your hair is not just about changes in your looks. I feel somewhat exposed, I can’t hide the fact that I’m sick, that I have cancer. I can’t be ‘normal’ anymore; everyone knows you have cancer when you lose your hair, everyone knows your going through chemo. There’s no hiding, not that I was hiding it but I didn’t necessarily want to declare it to everyone that sees me. Hey look at me I have cancer. What’s more people see it as an opening line to ask why you’ve lost your hair, that you’re ok with openly taking about your cancer. Strangers come up to you and just want to share their cancer stories. This is not always bad but sometimes you want to just ‘be’ and not be reminded you have cancer. You just want to go shopping, or watch your child run, or just be yourself.

I miss my hair, I really miss my hair. I guess it’s a bit of a grieving process losing something. You’re not the same without it. I miss my hair, my breasts, my old self. Where did I go? You do lose yourself, you look in the mirror and what’s staring back at you is not you anymore. I see my cancer staring back at me. At the moment I feel like the cancer is winning by a margin. It’s robbed me of my confidence, even my femininity. It’s hard to feel womanly when you have no hair. I hate the cancer look of no hair, no eyebrows, no eyelashes, no confidence; the only consolation is that I get a free Brazilian whether I like it or not.

I decided that my way of getting control back was to get my eyebrows tattooed. I was sick of drawing really bad eyebrows on every morning and I’m not one to put make up on everyday. I also thought I would be losing my hair for longer this time, could be indefinitely if this drug works for me. Apparently there’s no limit on how much you can have of abraxane. So I was thinking long term, whatever that means. The tattoo experience was just that an experience, I was petrified not with the pain involved or the needles but the permanency aspect, what if I don’t like it and I’ll be stuck with it forever there’s no turning back. Lucky for me I found the right people, I feel like I’ve made the right decision getting the tattoo.

I don’t think it’s vanity having concerns about my appearance. I love how people say it’s just hair it’ll grow back. I don’t see many bald women out there shaving off their hair. My beautiful daughter wanted to cut her hair to show her support for me, how lovely was that? My daughter is nine years old and it took her a long time to grow her hair and she was willing to cut her hair for me. How beautiful is my girl. When I first wore my wig out she also wore a wig. I sometimes worry that it might be embarrassing for her to have a mum with no hair but she’s fine. She’s not concerned at all with what I wear. She’s not phased by it at all, so sometimes when I pick her up from school I might have hair on or a hat or scarf. I wonder how she’s feeling seeing me change like this? It still feels odd that I have to think about what I’ll do with my head, do I put hair on? Wear a hat or scarf? Or go commando. I must admit I’ve not done the commando too often, you get too many looks and stares.

I bought a few more wigs this year and I’ve even bought human hair as I’m going to be bold longer this time around I thought this would be a good investment. I’ve had loads of issues with my human hair wig let’s call her Carrie. Firstly Carrie had loads of flyaways, the type you get after childbirth and you’ve had postpartum hair loss. I was not expecting flyaways with my wig. Secondly Carrie had a slight wave in her hair. I was expecting Carrie to have straight hair because when I went to try her on she was dead straight. So flyways and slightly frizzy hair after a wash; not what you would expect your hair to look like leaving a salon after spending several hundred dollars. Thirdly Carrie’s monofilament lace front looks obvious and her part looks almost balding! So let’s just say I was disillusioned and disappointed with my Carrie purchase. I did manage to fix her somewhat by giving her a keratin treatment, so no flyaways and straight hair; I’m so lucky I found the best hairdresser who looked after wigs. Your normal hairdresser is not enough they need to be wig experts too. So now I can have hair again!

It’s odd wearing a wig because you get all paranoid, especially when you’re meeting people for the first time. You’re not sure if they know you don’t have hair and you’re wearing a wig, can they tell? Are they wondering whether you have a wig on? Is my hair in the right place? I’m always adjusting my hair and touching it when I have my wig on.

I do miss my hair but it’s just hair, right?

Surprise! Happy birthday to me.

It’s my birthday on Tuesday and I’m so grateful I’m still here to celebrate my birthday. I have nothing to complain about really I can still walk, talk, taste, hear, I’m still functioning well and everyone tells me how good I look even though I’m bald now with my chemo.

I received an early birthday present from my cancer this year, I know how thoughtful of it. Which has put a dampener on my birthday celebrations, how dare it cramp my party! We went out to a fancy restaurant for dinner last night and as much as I enjoyed the whole experience there was this awful taste of death sitting in my mouth. It kept popping in my head all night, will this be my last year celebrating my birthday?

I had an MRI done on Monday as I had some issues with both my legs, some numbness and burning pain behind my thighs; I assumed it was related to the cancer on my spine. It’s just a small spot and it was being monitored, it was decided that it’s not something to be worried about yet. We don’t worry about small spots of cancer anymore, just large ones doing damage to my body, like causing hearing loss and balance which we worry about these days. So when I had my MRI and received an unexpected result, I was shaken to my core. How the fucking hell did my FUCKING CANCER GET HERE!!!! I fucking get a scan every quarter yet we didn’t see this coming. My fucking cancer has been squatting again in my body undetected in my CENTRAL FUCKING NERVOUS SYSTEM. WTF???? Thanks so much for giving me that early birthday present, how the hell can I enjoy my birthday, so glad I’m still here blah, blah, blah when I have this to deal with, when the next few weeks will be scanxiety week waiting on what my next treatment plan will be now. Every time my cancer comes back it seems to be getting very clever on where it hides and so much harder to treat.

Can you believe I haven’t seen my doctors yet after receiving this news, I spoke to my nurse but I’m still waiting on more reports, I had another MRI on Friday on my brain as well as my whole spine to just check where else it’s gone. So my birthday on Tuesday as much as I’m glad I’m still here, I’m slightly petrified at what’s going to happen next.

I googled my last report it had this – Leptomeningeal metastases. I want you to do the same. Wylie and I looked it up and was speechless when we saw it. Wylie was about to take Serena to her dancing, she was right there when we looked up my result so I couldn’t show any reaction, it’s getting tough to be brave about this, I’m still in shock and I’m just taking one baby step at a time for this one. I’m not ready to face this last cancer progression, what a random turn, totally unexpected and has taken me by surprise. Surprise! Happy birthday to me.

I’m back

Nothing to see here folks, just go about your business, all is ok. There’s nothing to see here, please move along. I feel that’s how I’m treating this cancer that’s come back, that it’s no big deal just another thing I have to just deal with but I don’t want to make a big fuss about it. Maybe if I don’t pay too much attention to it, ignore it, it might just go away.

Yes folks there back! I bet you didn’t expect me to be back so soon. Did you miss me? My cancer loves me so much they couldn’t stay away from me, no amount of drugs could keep them away from me, well no drugs at the moment seem to be working. So I’m back on chemo unfortunately. I’ve not taken this news all that well, that I have to go on chemo again. I feel like I’m back where I started six years go. You would think having gone through it twice now I would be ok third time around but nothing’s changed. I was just as anxious doing my first round. I was just as anxious doing radio as well, I don’t think its something you get used to at all no matter how many times you’ve done it.

My cancer seems to like going to weird and unusual places, it’s gone to my right mastoid which is causing me a lot of hearing and balancing issues, plus it’s in a few other spots but still just my bones which is one positive.

So here I am again, back for more punishment; well I hope I give my cancer some arse kicking for coming back so soon. I hope my new drugs abraxane will do some damage. So I hope to see you here again too?


Well that was the shortest happy news ever. I swear I was only hoping to get a reprieve from my illness for just six months, that’s all I was hoping for, nothing more. I had a small window there were I thought I could sit back and relax for a bit, take it easy and dare I say had some hope that things would get better for me.

My husband booked his long service leave for august and I just wanted to enjoy that time with him. We had started planning an overseas trip, it was going to be a once in a lifetime trip. I was feeling a bit worried about planning and booking because it seemed too good to be true. I couldn’t believe it was finally happening, we were getting excited about the trip the more we planned it out. What could go wrong now? Surely I couldn’t get sick between now and when we go??? My scans showed NED.

So when I had slight red skin on my right breast where I had the cancer, where they did the radio I didn’t think much of it, so much so I thought I could see my GP in the morning and then take my daughter to the park afterwards. Silly me thought I just needed to get some antibiotics to clear the skin infection. I was taken aback when the GP told me to go straight to the hospital, do not pass go, do not collect $200. I went straight to the hospital and had IV antibiotics, I was in hospital for 10 days. That’s 10 whole days in hospital! I felt so bad for my daughter as this happened during the school holidays and she spent most of her holidays visiting me in hospital. She was so upset she couldn’t go to the park that day.

The skin infection was actually clearing and was looking less angry but it just wouldn’t leave. I really hoped it was going to work out for me but unfortunately the infection didn’t clear so the next step was to operate. It was the longest stay in hospital for me and I hadn’t had the operation yet.

Our Europe trip seemed to be slipping away now, an operation??? It was just so unexpected, this is what happens when you start planning anything good, when you think that maybe for a short period of time you’ll be ok. I guess you have to be on your guard 24/7. It was longest day ever, I literally waited all day to get my operation I came out of surgery at 10.30pm. It was the least complicated operation I had; removing what little resemblance of breasts I had left, they removed my implants which was so hard because I had such bad tight thin skin from the radio it was just super stretched over the implants. My skin was breaking down and couldn’t cope anymore.

Taking away the implants has left me feeling exposed… It just brought back my cancer all over again. My body looks disfigured, I’ve been amputated. It’s hard not to feel embarrassed about my body, I feel humiliated, not sure why. There’s no hiding behind implants now. I have to face this SOB head-on now. It comes from all angles and pounces when you least expect it. It was just a skin infection, but because my skin was burnt to a crisp when I had radio my skin was compromised and I’m sure it will have other repercussions I don’t foresee yet. Having my lymph nodes removed I’m sure didn’t help either, how’s my body supposed to detect infection and fight infection without these?

It’s weird that this turn of events has pushed me to my lowest point throughout my whole cancer journey thus far. I’ve never felt so demoralised, so defeated. This might sound very dramatic but I feel like I’m in for a slow tortured death. It feels like there is someone out there torturing me seeing how far I can go, how much I can take. It keeps taking parts of me all the time and I keep repairing my body parts where I can. I keep trying to glue myself together again but I’m finding it difficult now to get myself back to my pre-cancer days. Once it’s broken you can’t get it back to its original state, it’s still me I guess but the cancer seems relentless at finding my weak points.

I’m at a loss with this latest saga, I’m too scared to plan anymore of my holidays in case this bloody infection doesn’t clear and I have to have more operation to clear it. I’m not looking forward to going back on the Afinitor either or getting my next scans done next month. I’m not sure I can take any more. People always ask me how do you do it? Well I don’t have a choice in the matter, you do it because you have no alternative.

I’m still here for my daughter, I still have my wonderful family & friends and that’s all that matters.

I Love NED

Hello, I thought I’d better give you an update as I’ve not written for a while and I have great news to share with you. My June scans showed amazing results, I mean unbelievable results, it’s spectacular really. I finally got my wish – I. have. NED!!! How fantastic is that! No Evidence of Disease. I can’t really get better results than that. I’m just blown away by it, I didn’t really want to say anything or get too excited until I got the official confirmation from my oncologist, which I did last Friday.

My oncologist calls my affinitor which I started taking after Boxing Day last year as the ‘magic pills’, so now I believe him. No one can really give me any info on how long I can keep my cancer at bay as my magic pills are so new. It’s a wait and see kinda of thing, but I’m happy with that. I just found out today that my pills cost $200 each! My pills will be going on the PBS next month so I’m not sure how much they will cost me now; at the moment they’ve been given to me for free on compassionate grounds because they weren’t on the PBS and they would have cost me $200 a day!

I’ve made so many changes to my life this year, I’ve been working hard on eating well and exercising. I’ve almost achieved my goal weight. It wasn’t about losing weight, although this was an added bonus, it was just about looking after my body and health. I do feel so much better for it. I started at 65kgs (not sure I’ve said that allowed before) to now I’m 55kgs. It might not seem like a huge weight loss but for me this meant losing all my chemo weight. So my body is back to its pre cancer days literally! Not only did I lose weight I kicked that cancers butt! So for now no changes to what I’m doing, I still have go keep taking my meds as they’re working for me and I still have to keep getting scans each quarter.

My cancer is a bit like a squatter, living in my body without my permission and I really thought it was never going to go away. I thought it was going to like its living arrangements that it was never going to leave. I guess with all the notices I was giving my cancer, what with the radiotherapy and daily magic pills, it finally got the message. For now my cancer is lying low not setting up anywhere else in my body and I’m quite happy with those arrangements.

I was thinking of setting up another blog which is more about food and travel, so I think it’s appropriate timing to put this blog on ‘remission’ for now.

My willpower muscles

My willpower muscle needed a break last week, hence my apple crumble recipe tonight, it’s back to work tomorrow for my willpower muscles. I think it was feeling a little fatigue I’ve been constantly using it since I started my new healthy lifestyle at the start of the year.

Not sure why I had a break from my 12WBT program. I think it was hump week. It’s so easy to do, it’s a slippery slope from 1 day to 1 weekend to 1 week. I did the shopping today so that I wouldn’t have any excuses from tomorrow.

I have had great results so far, I’ve cut down on soft drinks, almost nil now, cut down on coffee to maybe the weekends (which start on fri for me). At the start of the program I set mini milestones for myself at 4 weeks and 8 weeks, I did reach my goal for my 4 week mini milestone which I was surprised about, I didn’t think I could achieve it but there you go. I did it!

So I lost 5cm of my waist & legs and 7cm of my hips. I’ve lost 5kgs and have 7kgs to go. My fitness has improved significantly on my good days I can almost finish a spin class I flake out on the last two songs. I can run 1km under 7mins which I’m amazed I can do, did not think I could run for more than 2 mins.

I just need to flex my willpower muscles again and give it a good workout, I’m sure if I measured them they’ve probably doubled in size. I know they’re much stronger than before. I need to stay on track now and make sure all this good work doesn’t go to waste.

Apple crumble

I made this up tonight so thought it best to write it down so I don’t forget later. It’s super easy to make and doesn’t need too many ingredients, great for a Sunday night treat.

It must be apple season as we bought a box for $10 it had at least 30 apples. Most apple pie or crumble recipes seem to use Granny Smith apples but I had royal gala.


10 apples (peeled & cut into wedges not too thin)
1 lemon
1/4 to 1/2 cup of brown sugar
1 heaped tsp vanilla paste
1 heaped tsp ground cinnamon
1 heaped tbsp butter (maybe 40g?)

1 cup flour
1/4 cup brown sugar
100-120g butter cut in cubes

Preheat oven to 180-200 degrees Celsius.

Melt the butter then add the apples (don’t wait for the butter to brown). Add the juice of 1 lemon. Mix. Add the rest of the ingredients – vanilla paste, cinnamon & brown sugar. Taste and adjust to your liking. Keep stirring the apples and check that it’s just cooked through, you don’t want it too soft and mushy. I pricked it with a fork, you can feel the firmness of the apple. The apples will have more cooking time in the oven. Put the apples in an oven proof dish. You don’t have to add all the liquid or juice in, just enough to cover the apples, you don’t want the crumble sitting in liquid.

For the crumble I put all the ingredients in a food processor. The crumble should be like large breadcrumbs. Add the crumble mixture to the apples.

Bake for 25-30 until the crumble is crunchy and brown, until golden brown.

Serve with vanilla ice cream or custard or double cream.

I could adjust this recipe and use wholemeal flour and rolled oats to be a bit more healthy, I’m sure it would still taste great, I just didn’t have any on hand.

You could also add raisins or currants to the apple filling but Serena’s not so keen on them so I left them out but you could add this and reduce the amount of sugar used.

Bircher muesli with ALPS blend


I converted my daughter to have Bircher muesli for breakfast instead of having toast and jam. I love Bircher muesli I came across it when I lived in bondi, where going out for breakfast is part of the bondi lifestyle.

I came across the ALPS Blend recipe from weighitup. This is a great website with loads of tasty recipes. I love how they have the calorie counts and nutritional information with each recipe. The best part is that it’s free to join! Yep it’s FREE!

Serves 4

1 cup rolled oats
1 green apple
1/4 apple juice (optional)
120g tub of yoghurt – I use low fat yoghurt
2 tbsp ALPS blend


1 cup pumpkin seeds
1 cup sunflower seeds
1 cup raw almonds
½ cup flax seeds (linseed)
½ cup sesame seeds
¼ cup poppy seeds
¼ cup chia seeds

Makes 4 cups. I also add this to my salads.

To serve
Bircher muesli
2 tbsp yoghurt
Handful of blueberries or strawberries (optional)

There’s endless possibilities on how you serve this. The cafe I went to in bondi had half serve of Bircher and half toasted muesli with a dollop of yoghurt and poached fruit.

Cancer cure not

I’m going to be adding my recipes on my post, I hope you like them and try it out and enjoy. I love cooking and I love food. Cooking has always been my escape, it’s my time to zone out, I tend to just focus on cooking and nothing else. I’ve been practising mindfulness and didn’t even know it.

Like I mentioned before I’m on a bit of a health kick at the moment, trying anyway, I’ve had a few slip ups already. I don’t want you to think that I’m trying to cure myself from cancer by eating healthy foods. This is my disclaimer. I don’t think changing your diet cures cancer. I don’t think exercising cures cancer. But I do think that I’m helping my body heal by eating healthy unprocessed food.

I’ve just checked out the whole pantry app, the developer Belle Gibson has or had (not sure) terminal brain cancer; I’m not sure if they’re trying to say follow these recipes, this diet, this lifestyle and you can cure cancer but there are a lot of links to cancer stuff in the app. I was disappointed with the number of recipes there doesn’t seem to be that much, I found there were more recipes for sweets and snacks than salads but some of the recipes look good. I’ll test the recipes and share them with you.

First scans for the year.

I had my first scans for the year last week, it went smoothly enough, they found a vein first go via ultrasound normally it takes a few goes so I had a good feeling about these scans. The technicians were joking with me that I should get a loyalty card so that my 10th scan would be free. I told them I didn’t really want any free scans it’s not that enjoyable thanks anyway. Another technician asked me how I broke my arm, I get this question a lot now, I wish I had some great story to tell them instead of the cancer broke my arm, not so exciting.

I do have some exciting news to share with you, the radiotherapy did some damage to my cancer, the tumours have reduced in size. The lymph nodes by more than half and the one on my skull by about a third! I was really happy with my results I had tears of joy when I read my results or maybe it was tears of relief that all that suffering undergoing radiotherapy paid off. There was one small negative, there’s a new spot on my skull. The new spot is on the temporal bone around the mastoid area, it was there before last year in August. They couldn’t tell for sure before but it’s still hanging around so I’m assuming it’s another one. Apart from that one small glitch, overall a great result.

I saw my oncologist in his new clinic he moved hospitals and it was his very first day. I’m so glad he moved. I wasn’t too keen on the old one the hospital parking was horrendous. He went though my scans and he was very pleased with my results. So things were going well, my cancer had taken a beating, I’m responding well to my treatments my latest drugs are having minimal effects and by minimal I mean acne face, folliculitis on my scalp, ulcers in my mouth and a bit of eczema here and there on my body. I have a very high maintenance body but all things considered I can live with these side effects no problem. So things were going well with consultation and I had to ask him ‘the question’ can he promise me another year? I wanted the reassurance that all will be ok now since I’m responding well to my treatments. I was ready for him to say yes all is ok you can have another year, of course he couldn’t give me an answer. He couldn’t give me that assurance I desperately want to hear. But who can promise me tomorrow anyway? No one can promise me that. It was silly of me to even ask him.

I was a bit upset with my oncologist visit, it didn’t go as well as I’d hope. He said it might be fine now but who knows it can go pear-shaped in six months time. He can’t promise me anything, we are flying blind here people! I’m on new drugs, so new that I’ve been on them the longest??? I know I’m a pioneer! He said that my cancer is ‘special’ he’s not come across it before; I thought that was an odd thing to say since I thought it was common for breast cancer to go to bone, textbook material. He explained further and said the different locations where it’s gone is odd on my arm and my skull and the lymph nodes. So I’m special and a pioneer! Can I just point out here he’s never disclosed this before to me about being special. I’m not sure I want to be special or a pioneer…

I also asked about my treatment going forward, he said that I could be on these drugs for six months then maybe a different one after that or maybe even have a break from treatment. I didn’t think you can take a break from cancer? If only that was possible, I would be going on holidays permanently. I was surprised by that and a bit scared at the prospect of not having anything. I feel like as long as I’m taking drugs I can keep the cancer at bay. So I’m not sure how I’ll cope with not taking anything and if anything did happen I would probably be beside myself. I would have to give this careful consideration, if this situation does come up. I can’t worry about it now, I’ll deal with it if it happens.

This cancer stuff just keeps slapping you back to reality, maybe I’ve been in denialtown too long. I have been on holiday mode after my radiotherapy I just focused on enjoying the school holidays with my family and friends. So now the holidays are well and truly over back to reality, back to routine of quarterly scans and monthly check ups.

At least I have my next holidays to look forward to. Not that I’m wishing away the weeks till my next holidays. I’m working hard on my new occupation, my health as I mentioned on my last post. I have my mini milestone to share with you next.

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