up and down and up and down

I had my scan this week and unfortunately the results weren’t as good as I had hoped. Basically no big changes, some of the lesions have decreased and new ones appeared, so that volume wise it is still the same. After suffering so much more, compared to the other two chemos I have had, I was hoping at least that the bad boys are getting a big kick now. But it is still early days my Oncologist said, I have only been on this chemo for 6 weeks. So we decided to carry on for another 4 weeks and I will go for scans again beginning of September.

My last two weeks have been quite up and down health wise. One day I feel fine, next day I am nausea and dizzy, or I have diarrohea, stomach cramps, skin irritation etc. I had to finish my last cycle of chemo a bit earlier because my handpalms and soles of my feet were getting really red and sore. I wanted to pull it through until the end of the cycle, and actually made it a lot worse. My Oncologist told me I should have reported much earlier. So now here I am still recovering from the side effects. Luckily I can walk again, I had a couple of days were I hardly made it to the toilet because of the pain. Appetite loss is another big factor. Can you actually believe it, me, Helen Harder, not feeling hungry?? I can’t, but it is true. You can not even tempt me with chocolate at the moment. Instead I do drink funny things like Lemonade, which I never been very keen on before. I really have to force myself to eat. But hey, as long as it doesn’t last very long and I am loosing a few kilos before my wedding, it is fine.

Depending on my blood results tomorrow I will start my 3rd cycle on Friday. We have lowered the dosage of my tablets a little, now it will be only 14 tablets instead of 18 which I take throughout the day. I will also have a “Write and publish your own book” workshop on Friday which I am looking forward to. Just hope my health won’t let me down and I have to cancel it, but since today I feel a lot better.

I must admit though, when I saw the results on Monday I was pretty down. It is always this: “hanging in there”, “stay focused”, “don’t give up” attitude which you need. And I have a lot it but sometimes you just wish you can just let go of it and have a break. My breaks are normally a day or two were I don’t feel well, am angry and disappointed, cry and shout and then I get back to “normal” and fighting action again. I know these days are as important for me as well as the fighting ones.

My parents are about to leave next week after nursing me the last 3 months and spoiling Alwyn and me with taking care of household, cooking, shopping, walking Ms. Tipsy etc. It will be difficult to adjust without them. They have been a tremendous help! Where would we be without our parents! Thanks Mum and Dad for the wonderful, unique parents you are!!

Another big thank you goes to my friend Silke Hansen. Silke works at my former employer GIZ in Pretoria and flew down on 21st July to Cape town together with her friend Rebekka to run a half marathon for me. She made it in 1hr and 55 min.! I am so proud of you Silke and Rebekka! At least I could wave to you out of the car and embrace you later at the finish line. Silke got a lot of sponsors and donated more than ‚ā¨ 1100 for me. Thank you to all my former colleagues and Silke’s friends and family. Some don’t even know me. Again, I have no words… I am so grateful for all the people who think and support me.

Alrighty, I better finish now. I have an appointment for my wedding cake today, which is much more important to me than my wedding dress ūüėȬ† Can’t wait to indulge myself into the cake. Just hope my taste buds will be back to normal then!

Love,

Helen

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Chemo No. 3, second cycle

Winter is here, so we stay home next to the fire place and cuddle up. Sounds like our winter is the european summer, feel sorry for you guys over there! Mum and Dad do not have any regrets at all being here, the british summer is the worst in over 100 years.

The targeted therapy got approved by my medical aid, which is absolutely fantastic, I only need to pay 10% of it. Phew, what a relief and such a blessing for us.

I started my 2nd cycle on Thursday. A cycle is always three weeks, two weeks with Xeloda and Lapatinib which makes 18 tablets a day and one week with only 8 tablets a day. I do not need to go into hospital anymore which is a lot more convenient for all of us. My first cycle was pretty hard, every day I had something: nausea, appetite loss, diarrhoea, constipation, skin sensitivity, I can carry on like that…… but thank God never any pain.

Luckily since Thursday I am feeling ok and haven’t had any side effects except for feeling tired. So we’ll hope it will stay that way. I have changed my diet a little bit, started eating sugar and wheat in little amounts again. My oncologist said, it is also not good if I “punish” myself too much. Trying to get a good balance is sufficent. I am currently deciding if we are going to look further into my metabolism (Stoffwechsel) to find out what my body is lacking the most and what could have caused the cancer. Therfore a gene test would be necessary. So am looking into the advantages and disadvantages.

I have also started writing my book / telling my story. My longterm friend Samira from Germany works in publishing and offered to help me, so we have our regular skype sessions and we will see where it takes us. It is nice to talk to her at a regular basis, and to go into the “deepside” of my last year and a half.

My next scan will be around end of July, beginning of August. I will tell you all about the results once they are out, am very positive that this one is hitting the cancer on the nail, to get it out of my body for good.

Cold but sunny winter greetings from SA,

Helen

 

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schnipp-schnapp, Haare ab!

last Sunday I had enough with the hair being all over the place again. Where ever you look, where ever I go there is hair. And I started looking like the professor of the movies “back to the future”

Imageyes you may laugh, we did it as well!

So we did schnipp-schnapp Haare ab and you all know the look

Image

and the hats..

Image

 

Chemo is pretty tough at the moment, have just no energy whatsoever and am not feeling hungry at all. Which is quite unusual for me, hey! So am hanging in there and taking it very, very, very easy and slowly.

Many hugs and even more love & joy!

Helen

 

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when the going gets tough

Dear All,

I had my scans today and sadly they weren’t as good as I had hoped. The tumors in my lymphnodes and in liver have grown further, being actually even bigger then their original size from March 2011. They haven’t been treated since the 11th May this year ,when the brain tumors were diagnosed. The treatment had to be changed and the brain treated first. You can’t do both at the same time.

I was hoping through my anti-oxidant-diet and detox it might have an impact on the cancer but so far it hasn’t, or it is difficult to prove. However I’ve been feeling rather well ever since. I get the odd day where I don’t feel well but it still is rare. My oncologist said I should keep it up, but we have to respond to the cancer rather quickly, it just shows how aggressive it is. So for now I will start with the chemotherapy Xeloda, from tomorrow morning onwards, 8 tablets a day for two weeks, then a week break and then the 2nd cycle starts. We are still hoping for an approval from the Medical aid for Lapatinib which is more targeted and would be “added” to the chemo. This will hopefully happen within the next two weeks, but I will have to follow up with the Medical aid regularly. If it won’t get approved we have to consider paying it ourselves or to go for the “red bull” one. As I am taking things step by step I will make the decision closer to the time.

You might all ask, how do you feel now, Helen? Well, rather crappy. I just don’t feel like doing it all over and over again, but I do not have any other choice. When she showed me the list of side effects I thought….”not again”… but at the same time all of them ( vomiting, nausea, skin rashes, diarrohea, fever, appetite loss, chest pain, mouth sores) didn’t occur to me during my last 2 chemotherapies. So I hope and pray they won’t do this time either. Dr. Pienaar always gives me and my family¬† a positive and peaceful mind about the progress ahead, which helps a lot. But my hair started falling out yesterday and that makes me pretty sad too. I am just sick and tired of going through it again. I know it will grow back, and I know you get nice hats, and I also know no hair and short hair suited me quite well. But I am so happy the way my hair has grown, and now to start from the beginning…. I just had enough. And you will always relate your hair to the cancer obviously, so it is different to if you wanted it to be like that.

But that’s the way it is right now, and it doesn’t help to get upset about it. I accept that this is the path He has given to me and I know He will get me through it. I do not want to put any stress on myself, rather accept it and look forward and go ahead. I let the bad times happen, feel down, sad, upset, angry and frustrated but luckily the wonderful moments still dominate and life shows me it is so worthwhile fighting for. I am reading and chatting a lot with cancer survivors at the moment and it is amazing to see how people live with it and have overcome the dis-ease! It inspires me and keeps me going and I thrive in it.

I want to make my blog a bit more interesting and was also thinking of writing a book. I will have to get in contact with a publisher. Going through all these emotions (re-)capturing these times that i have experienced and those which are still coming up, will help me a lot to keep up the strenght and fighting spirit I carry.

So I am still “the harder the better”, that is for sure!

Much love,

Helen

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decisions, decisions, decisions

… so here I go, almost finished with my brain radiation. I had my 8th one today (Friday 15th June) and got two more to go, next Monday on Tuesday.

It is actually very quick, only takes 15 min. with preparation and the radiation on my brain itself only 45 sec. each side. I need to lay on a bed, like one does when you go for x-rays. Then they put a kind of net plastic mask on my face which is REALLY tight, to make sure my head does not move during radiation. If you are claustrophobic then it is definitely NOT your thing. You can see a photo below.

Looks like Hanibal in “Silence of the lambs” hey?

So far, I had hardly any side effects, no nausea, no headache, just feel a bit tired and do get exhausted quite quickly. But that’s ok and easy to cope with. I spend valuable with my parents and Alwyn and take it easy, do Yoga and get my reflexology sessions.

Yesterday we went to see my oncologist Dr. Pienaar and discussed my further treatment. My medical aid ( Krankenkasse) did not approve of the chemotherapy (Xeloda and Lapatinib) so we are busy trying to hand it an appeal. There are other options as well, and it is difficult to say which option is the best for me, because every patient reacts differently. So I am not sure, if this is maybe a sign that my medical aid did not approve of the above mentioned treatment, and I should go for the other one, which would be the “red devil” or as we call it now “red bull” since we want to be positive about it. I still have a strong feeling that my anti-oxidant diet and leaving sugar and wheat out has a strong impact on the cancer. Next Wednesday I will go for my scans (abdominal, liver and pelvic) and then we will see. All in all I am still quite positiv. But making these decisions, reading all about cancer and what you should do and shouldn’t does keep your mind very busy and takes a lot of your energy.

So that’s how things are at the moment. Enjoying the nice, sunny winter days in South Africa and fighting further together with my breast buddy Nikki who has started her chemo no. 5, and all the other fellow cancer fighters out there.

Thank you for all your lovely comments via my blog, facebook and Email. Over and over again so encouraging to read all of your words.

Much love,

Helen

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full of life and joy

Hello my dear support group!!!

Wow, what a journey it has been the last few weeks. I don’t know where to start and I don’t know where to stop. What I can say for sure is I am full of life and joy and embrace you all for being with me all the way. I think when I went in for my brain operation to remove one of the two tumors on May 22nd the world was standing still for a moment. People from Hawaii all the way to New Zealand were thinking of me.

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The few days before I went in, I was wondering and worrying, will everything still be the same when I wake up from my operation. My Mum and me did pyjama shopping and you look at the clothes and wonder, will they still look the same to me when I wake up. I hug and kiss Alwyn and I wonder will he still feel the same; you look at the flowers and the beauty of nature will they still smell the same. You wonder will your senses be the same and what is if not?

In moments like these were nobody can give you an answer you can only pray and hope. Send all your worries and thoughts to the Lord and ask him to please let your life be the same. He heard my prayers, and when I went in on Tuesday at 8 am, I was calm and felt I was on a puffy cloud surrounded by angels when they pushed me into theatre. 2 hours later the operation was done and I woke up in the ICU around 12 pm. And when I saw Alwyn and my Mum and everything was still the same I was the happiest person on earth. I could see, feel, hear, and talk to them. Life is so wonderful!

I had to stay one night in ICU, which was terrible, you don’t get to sleep at all. Just machines and nurses around you the whole time checking on everything. The¬† next morning Dr. Fisher-Jeffes my Neurosurgeon spoke to me and said I can get out of ICU. I got a room by myself with a wonderful view to Cape town (see slide show) and recovered really quickly. On Thursday they took me of the Catheter and I did my first steps to the toilet. On Friday I had my first little walk and so I continued until they discharged me on Monday. Every day I could feel how strength is getting back to me. I had regular visitors but not too many. Poor Alwyn fell sick that week and had Tonsilitis (Mangelentz√ľndung) but he did so well and was always there but with a mouth guard. My Mum and Alwyn really are a dream team, and since last Friday it is stocked up by my Dad who has arrived as well.

I received lots of cards, presents, phone calls and flowers during my stay. The staff and everyone was really friendly and helpful. But I couldn’t wait to be back home and to see my little Ms. Tipsy! It was so nice to come back. It took me a few days to adapt, because you have all the ringing bells in the back of your ears from the hospital, as well as the smell and you get woken up so often because of so many check ups I still struggle to fall into deep sleep until now. But I have so many ideas and things floating in my head which I want to do and I read an inspiring book from Louise L. Hay ” You can heal your life” which give me so much power, I am thriving day by day.

I also changed my eating habits, having a highly rich Anti-Oxidant diet, detoxifying my liver and lymphnodes and leaving out wheat and sugar for the moment. I got together with my Oncologist and a Nutrition expert / Ern√§hrungsexpertin and we worked out a good strategy for me. But since I can not live without chocolate I did a research on the Internet and found some lovely raw organic chocolate, which is sweetend with aguave nectar. If you love dark chocolate this really is devine and so yummy. Have a look at http://www.honestchocolate.co.za . You can eat it with a good conscience, since it has no fat, no sugar and is rich in anti-oxidants. Today I made myself a lovely hot chocolate as well, added a bit of Vanilla to it… hmmmmm. My friends surprised me with a lovely smoothie maker too, when I got home, so I make sure I¬† eat stacks of fruit and veg every day, especially green ones are really good.

Yesterday I started my first session of radiation on my brain. It is quick, the whole process takes 15 Min. Each side of my brain gets radiated for only 45 sec. Today I had my second one and tomorrow will be my third. I will have a break until next week, in again from Mon-Fri and then another two sessions after that. I will have a break for a week and will then continue with Chemo. It is not going to be the red devil one, it will be a different one. They got the histology of my brain tumor and they confirmed it is breast cancer which is a good sign, that I do not have a different type of cancer.

At the moment I have a feeling I won’t need the chemo anymore, once I am finished with radiation. I feel so radiant and feel I can kill the cancer with mind power, my anti-oxidant diet, and with help from the Lord. I will go in for scans before I start the new Chemo and I wonder what the results will be like. According to them I will decide how I will continue. I feel so positive and powerful it is incredible.

I do take a lot more time for myself now and it does me so well.

On the one side I wish myself, my family and all of you wouldn’t have to go through all of this, but on the other side what I have experienced and learnt about myself since I have been diagnosed with breast cancer is something I do not want to miss out on.

Love you all lots like jelly tots! There is much more to come…..

Helen

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bad boys are hitting back but we got a plan of action

Oh, I really hate writing on the blog with negative news, but it is part of my journey and I have to shout and write it out “loud” in order to fight back!

The last 4 weeks I was suffering from headaches, which have been coming and going, very irregular, sometimes severe sometimes very little. At my weekly visits at the doctors I told them about it and we observed it, and decided when I go for my next CT/ pelvic scan I’ll go for a brain scan as well. I didn’t feel very well on Monday, Tuesday 7.5. & 8.5.) but back in shape on Wednesday. When Alwyn and me left Thursday morning for the scan, a headache attack came over me again, from one moment to the other. Whilst I was waiting for my scans I had to vomit a few times and after the brain scan I had to go on the drip. I felt so nausea and drained. The doctor admitted me to hopsital straight away and came two hours later with the bad news of the cancer spreading to my brain. Alwyn and me could not believe it, we were so sure the headaches were a side effect from the longterm chemo I was getting. I have two tumors in my brain, one which is a bit bigger but close to my skull, it is almost a size of a golf ball but the swelling makes it as big as a tennis ball. It does have a little impact on my eye sight and also describes why I had the dizzy feeling lately. The other one is much smaller but close to my brainstem, so further down.

After digesting the shocking news and informing our families, we just spent time together at the hospital and were hoping and praying for a miracle. The next morning we went to see my fabulous Oncologist Dr. Pienaar, and like my breast buddie fighter NIkki told me, she had a plan for us straight away. Yes, the cancer has hit back, but we have got a striking plan to give the bad boys such a kick, so they can feel the TRUE Harder!!!! It was amazing to see how everything fell into place after speaking to her. I do not want to go into all the details, we had a few doctor marathons again, everyone reacted promply and competent and the plan of action is the following:

Next week Tuesday I will have a brain operation to get the big Tumor out. I will probably be in ICU for 2 days, and up to 10 days in hospital afterwards for recovery. We will then start the radiation, 12 sesssions, 1 each day for approx 10 min, to treat both tumors in my brain. After that I will have to start another chemo, which will most probably be the “red devil” one. Yes it is evil, but hey- I do not care as long as I can get these bad boys out of my system, I do anything. I met my Neurosurgeon as well, who is a very straight forward and experienced surgeon, who we both fully trust. He and Dr. Pienaar explained everything very clearly to us, which makes us fell confident and hopeful that everything will work out well. I know I am repeating myself in my blog, but I it is incredible to see, how everyone reacted after the news were spread and how from one moment you feel torn and lost, the next moment you feel you are in this warm nest, full of hope, fighting spirit, love…. WOW!

My Mum booked a flight on Thursday night, and arrived Sunday morning. All of a sudden this whole big world, becomes a little place and everyone feels so close! Thank you my dear family and friends, I can feel all your comfort and support. I also would like to tell you, please do not pity me. I do not want any pity. All I need is fighting spirit! Nobody on earth deserves to go through what I have to go through, but it just does not help to get upset and angry about it. We just have to accept the paths we are on in our lives, and have to make the best of it. And it takes you to beautiful places with all these up’s and down’s. Remember everything happens for a reason.

I was discharged on Saturday from the hospital, and am at home now. I feel alright, getting a lof of medication to get rid of the swelling before my surgery, and also have to take Epilepsy tabletts so I do not get any fits. If I take any other medications now or get sick my op has to be postponed, which we obviously don’t want to happen. We want to fight right here and now.

I have also decided to leave my little projects I had going on the side line and really focus on me and my health only. I know the coming months will be tough, but I also know that I will get back to full health and strenght soon again. With the help of God, family, friends and LOVE we can fight back. I know it and I can feel it. As well as I know that I will get married to my beloved Alwyn end of October and as well as I know that I will be able to fly home for christmas this year!

The coming weeks I will focus more and more on living healthier, getting a rich anti-oxidante diet, work on my mental health etc. I will ONLY focus on myself, which I think I haven’t done enough until now. It is part of the process i have to learn. I am thankful for any helpful links, which you can comment on below or send me via Email.I told my doctor as well that I look at the cancer in a holistic way, I know the drugs are one thing, which I can not avoid, since my cancer is so aggressive. But she approves of the spiritual and alternative medicine as well, one just has to find the right combination, because it can become more toxic as well, since the impact of it can double or half the effect as well. So it’s all things to source out now.

I will keep you a bit updated via facebook, for those who are registered. Obvioulsy I won’t be in the state to write a lot in the following weeks, but I will try my best.

Until then, keep me in your prayers and thoughts! Stay positive, keep smiling and we will rock and embrace this world all together!

Love,

Helen

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