hermyleen_my ex cancer

41 yr old with right breast carcinoma diagnosed 2008. Ex cancer can't take the hint and has come back in the right humerus and in the occipital bone region.

Amputation

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.

Ingredients

Filling
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?)

Crumble
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

image

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!

BIRCHER MUESLI
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

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.

12WBT – a letter to myself

I’ve just started a program called Michelle Bridges 12 Week Body Transformation, so I thought I’d share this experience with you. The program provides you with meal & exercise plans to follow for 12 weeks with mindset videos, forums you can chat in, challenges & goals you set yourself. The first weeks challenge is to write a letter to myself. I thought I’d share this with you.

Dear Hermyleen,

This is really tough talking to yourself! What do I ask myself? Why did you join 12WBT? I guess I want to find the Healthiest Me this year. I’ve never had an opportunity like this in my life where I can just concentrate on getting healthy. Make it my full-time occupation. How lucky am I that I can do this? And why wouldn’t I want to be healthy? after the year I’ve had I need to make my health my number one priority so I can help my body cope with all the medications I pump into my body. I need this, I need to know that I’ve done everything I can possibly do to help me get better. Joining the program makes me accountable and I need that. I need goals, that’s apparently how I get my self-esteem (according to my psychologist) by achieving goals. I’ve always had projects and goals in my life be it buying a unit, building a house, getting that promotion at work, now it’s me. Finding the Healthiest Me. Just a thought, if I fail I’m going to be devastated!!! So I can’t think about that now.

Now I’m really worried. I’m scared of failing this. I hate failing. I’m worried it will be all too hard. I’ve tried so many times before, every year I sign up to the gym or boot camp or weight watchers with little result. Lets face it how will this time be any different? I can say my life depends on it but do I really want that pressure on myself? Will it make my cancer go away? As much as I’d like to believe I can heal myself with a healthy holistic lifestyle I’m still doubtful.

Why is it so hard to change your habits? even if you desperately want it? I know that this will be a tough road. I’m not just changing my diet and lifestyle I’m taking my family on this with me as well. I can’t do this by myself, I need my family to help me as well. I want to do this for us. I want Serena to grow up with healthy eating habits, incorporate exercise in her daily life. I want Serena to have me, to have us, for as long as possible. So I’m going to be organised, I’m going to be strong and not cave in to easy options. I’m going to have faith in myself that I can do this.

I don’t really know how I should live with metastatic cancer but I feel I need to make these changes to help my body; I feel I need to help my body heal.

Love
Myself

My question to you, yes I’m talking to you now I know it’s confusing me to. Do you think I’m crazy for doing this? Do you think it’s silly when I don’t know what’s going to happen to my health? when I can’t control what happens? do you think this is a waste of energy and I should just enjoy what could be my healthiest me already???

Rocket pesto

I made this for dinner tonight and made up this simple meal. I wanted to use my home grown cherry tomatoes & left over sourdough bread. It seems pretty healthy. I think the pesto will go well with chicken or prawns or fish.

Rocket pesto:
120g packet of rocket salad
2 cloves of garlic
1/4 cup raw cashews & walnuts or pine nuts (whatever you have on hand)
Juice & zest of 1 lemon
2 tbsp of olive oil

Other ingredients for pasta dish:
3 slices of sourdough
1/2 cup of cherry tomatoes
Dollop of creme fraiche (optional)
Pasta of your choice

Method:
Cook pasta according to instructions, I love fresh pasta but dry ones are just as good. I used linguine but spaghettini would be awesome as well.

In a food processor whizz up the rocket, garlic, nuts, lemon juice & zest & olive oil.

Put sourdough slices under the grill until they are brown & crunchy. Once done put in food processor and blitz until small breadcrumbs.

Once pasta cooked add rocket mix (you don’t need to add all the rocket pesto, you can save some for another use). Add the cherry tomatoes no need to cut add them whole. Add a dollop of creme fraiche. Finally top it of with breadcrumbs, try to not put on top of creme fraiche so it stays crunchy. Enjoy.

A post about nothing

Happy New Year! I have no news, which is great news for my first post! I’ve been thinking heaps though about my blog and where this is heading since I feel like my cancer is in the back burner again. Do I stop blogging? Do I just write about stuff? The thing about this cancer is that you don’t know what’s around the corner, one minute your ok, you think, and the next minute the news just keeps getting worse and worse than expected. There’s also the waiting factor, there’s heaps of waiting for test results, waiting if the treatment worked, waiting for your hair to grow, waiting for the side effects to kick in, waiting at the doctors. I’m waiting for the side effects of the Afinitor to kick in it, I’m slowly getting them back. I’m also waiting for my next scan before I see my oncologist in Feb to see how the radio went. I know it’s melted away the tumour on my neck as I can’t feel it anymore and I have burn marks to prove it but I don’t know what’s happened with the cancer on my head. I certainly don’t have the headaches everyday which I used to get but it’s still there. Unfortunately I didn’t get NED for Christmas, I was greeted on Christmas morning by my cancer waking me up. It wanted to make sure I knew it was still there. Thanks a lot Santa!

Back to my blogging, I really didn’t have a vision about the whole blog thing, no structure, not sure of the content, no idea at all. Much like this post. I was also worried about my writing (still am) as it’s not my strong point, I’m a numbers girl I’m much better with problem solving. I know I get my tenses all wrong and I apologise for that. So sometimes I think to myself why do I feel like I have to write? I think it helps me sort out how I’m feeling, dealing with all the cancer shit. Unloading helps as well, it must be the catholic in me, you know when you confess you feel better afterwards? Anyway I thought about having a Facebook account with my blog name so it’s separate from me because sometimes I just want this cancer disassociated from me. I don’t want to be the cancer girl. I don’t want people to think Hermyleen yes she’s the one that’s got cancer. But then I thought if I had a FB account under my blog name I would feel like I had to write more about cancer, not just about my experience but just talk about cancer in general, have cancer news everyday and I’m not really that girl. I don’t want to talk about cancer everyday, I don’t want to think about it everyday. I don’t want it to become part of me, that’s not who I am. What’s happened to me has helped in shaping who I am but it’s not who I want to be. I don’t want to be the cancer girl. I just want to be me.

So back to my blogging, I guess I’ll just have to wait and see where it takes me.

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