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Day five...Taken up the Eiger.. Ooer Mrs!

by Claire7. March 2014 21:20

 Sleep! Last night I had an amazing sleep. But that was after having pain in my heart/chest. I’ve noticed the last two nights my heart racing. I am putting it down to having the amino acids that were prescribed by the clinic. They do advise not to have them close to bedtime. I took my last dose at 6pm. That’s hold be plenty of time. A little worrying but thankfully must have calmed down as I had one of the best nights since I got here.

My appointment went well. I think. I had my next round of treatment then I was scanned by the German doctor there. They feel the blood supply in my spleen looked really good therefore indicating the macrophages were doing their work. They weighed me and took all my measurements like the beginning of the week to see if my muscle mass had improved. No. In fact my weight changed three times on the scales in 30 seconds. I have in fact out on weight, lost muscle mass and increased my BMI. This doesn’t bode well. I am taking 30 amino acids a day... how is that possible? I am not sure that the scales were right.  My scans will be seen by Prof Marco and he will be sending me a report of how he feels things went and what to do next.

This afternoon Pete had a little surprise for me. We drove for about two hours into the mountains and we ended up in Grindelwald where many films have been made but

most importantly it is a ski destination. The sun was shining the mountains looked stunning too. Pete had been talking about taking me to the Eiger all week. The Eiger is featured in movies too. We had a blissful afternoon sunning ourselves and walking in the mountain air.

                                   

On the way home we stopped by the most amazing lake where there was a diving board to swim in it. Tempting but maybe a bit cold at this stage of the year.

We got home and had a little picnic in our room. Thank goodness for Aldi! Ha ha!

                  

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Blog By Bear for all the other Bears....

by Claire7. March 2014 07:28

 

So Claire is having her treatments and I thought I would write a Blog for all the Bears. This is fraught with issues however. What analogy fits best? I first thought Head Coach but the more I ponder it the more I think Colonel is the way to go.

 

So when Claire had her first diagnosis this was nothing more than a small uprising. I read up and it seems that this was very treatable, the doctors were very confident and on advice it seemed that the standard treatment would work to put this uprising down and we could get on with life.

 

If you are at this stage then please stop right now and realise that, the doctors aren’t always right are sometimes over confident and start acting now like we all have at stage 2.

 

Stage 2 is about 6 months later and comes with a terminal diagnosis, all of a sudden this local issue has gone global and you are engaged in a full scale war, with no Geneva Convention, no prisoners and an attrition rate that makes a Battalion in Afghanistan look safe as houses.

 

So what does a good Colonel do? Well like me you probably started with knowledge. Lots of knowledge and mine created the 10 point plan, that we still live by today. Then you gathered your staff officers around you. Mine are incredible. Our friends and family go through hell with us and then come back for more, they are our strength and motivation and we could not love them more dearly or be more grateful for their support.

 

Next comes the Battle plan and for this we need strong allies.

 

Veteran troops who have been fighting this battle for years, with traditional methods, but also new recruits, who are fellow soldiers with exciting and innovative ideas. These are the special forces, at the very edge of this fight and to support them we have “Q”, the scientists and physicians we have met who with passion and dedication have stepped outside of convention to search heart and soul for a cure.

 

As Colonel in charge you then have responsibility to make this work. How many times do you hear, “we can’t give a cure, this is about living with canSer and dying of old age, not a cure”? Well maybe this is true but the aim is to win, so let’s keep that vision in mind and settle for long term survival. The reinforcements are coming – I can see advancements every day and the awareness is getting stronger. This is an unstoppable force if we all fight together.

 

So how does our role differ from the loved one we support (not much I hear you say) but to me there are two huge challenges.

 

The first is to preserve normality. From day 1 we both decided that we would acknowledge canSer but not give it the respect to dominate our lives. We have lived to this and try in every way to be “normal” (not easy for us) but then you have the big “abnormalities”.

 

Waiting on a scan result, effects of a new chemo, trips for treatment abroad. This is almost insurmountable and like me you probably approach them with dread and determination. Dread at what is outside of your control and determination to action that which is. This is our job, to make the best platform for our loved one to be healthy and happy and that means “normal”. I remember asking Claire, “Where in the world would you like to go, what would you like to see and do?” when we were faced with mortality and her reply, “ I love it at home being loved and in my safe place”. If you can maintain normality when all about you is falling apart then you are succeeding and should be proud of all you do. I am still trying!

 

So what’s the second thing? Well to me its support. It has to be real and has to be from the heart. There are two types and both scare me (I know the little phrases about worry but I just can’t control these), emotional and physical.

 

When you are faced with THAT question, “It’s all going to be Ok isn’t it?”, then you had better be 200% certain in your head, have all the facts and know the theory because the answer is the world to your loved one. Knowing where we go from here – That’s the Colonels job and hopefully sites like Claire’s are huge support in that. Having the right allies also helps – I’m here if you need me just pop onto the forum page.

 

Then the physical support. Fighting this war is not cheap and the fear is that funds will run out. Well perhaps it’s not resources but resourcefulness and I am going to dedicate my life from now to ensure that all treatments are available to everyone – if anyone can or wants to help with this, let’s talk. Nothing can stop a determined group of motivated individuals let’s do this together.

 

Who knows guys maybe we’ll get a promotion to General – love to all your brave soldiers’ xx

 

I will blog soon about my feelings on the different treatments we have been having.

 

 

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Day Four..

by Claire6. March 2014 21:09

 

After a weird nights sleep (I think I took too many amino acids too close to bedtime) we got up early to train in the gym. I always feel so much better for making the effort.

I then go to the clinic early as we were having a lecture on foods.

To begin we were given the lowdown on how GcMAF works. It was really enlightening and informative.

Food then began to flow and weirdly enough red wine! At 9am in the morning? Anyway it was a nice time chatting with the other attendees. I noticed we all looked really bright and well. On chatting I find they have been asked to stay until Monday although not all are told they will be treated and certainly none were told they would be given the full treatment.

I am now not sure if I shold stay until Monday. All that extra cost for no extra treatment?!

I then find out a lady who takes naltrexone like I do but was advised to stop prior to starting GcMAF. I have not been advised to do this. Is this an oversight or different treatment?

I don’t want to feel anything but positivity about this treatment and I am very happy with the people here but feel there are missing elements. Should the Prof be here every day?

This afternoon Pete and I decided to head into Lausanne, after a short stroll we met some of the other attendees down by the port.

It was such a beautiful afternoon. Afternoon went into evening and we enjoyed an evening meal together...

Great day.

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GcMAF Day 3... Wonderful day in Montreux

by Claire5. March 2014 21:01

 

I checked my email frit thing this morning and noticed a message from a friend of a friend who is here in Switzerland having GcMAF!

I quickly replied and planned to meet her. Wow! How small is this world?

I had an early appointment today and it was nice to get it out of the way. They scanned my spleen to see the activity and increase in blood supply. They believe this shows a good response for the macrophages. My spleen has had an increase in blood supply- so that’s positive.  If only there was a way of knowing if it’s slowing or stopping the tumours in my lungs?

The rest of the day has been bliss. We spent the afternoon walking in Montreux along Lake Geneva to Chateau du Challon to Freddie Mercury’s statue, up to the old town, fluffed a cat called Jambo and bought some new shoes! Whoop!

                                  

We then met a friend of a friend. It’s so lovely meeting new people and very enlightening comparing our treatment experiences.

The thing I keep noticing is how well all these people are. It keeps me hopeful but I also think how many of us are out there doing the same?

I’ve really had an awesome day with my hubby ...

..Cos I’m happy. (Clap along if you feel like a room without a roof.... Fa la la)

 

                         

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Day two...

by Claire4. March 2014 20:47

 

We started the day in the gym this morning. Pete was helping me do exercises to open my chest so I can breathe more- taking in more GcMAF using the nebuliser.

My appointment wasn’t until the afternoon so we spent the day doing homework and Pete skyped with the office. It’s amazing how comfortable we felt. Pete walked me to the clinic but left to continue his work.

Treatment was fine again – not much to report really.

We hopped into the car and to Ouchy, the place where the Olympic movement was founded. Great name for it! We had a quick wander round the museum before settling for an early meal.

An early night for us. I had an Epsom salts bath then hopped into bed...

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Triple Negative Breast Cancer day and the first day of GcMAF...

by Claire3. March 2014 20:05

 

Today is Triple Negative Breast Cancer Awareness day…

And the first day of GcMAF.

We spent the morning in our hotel room. Pete has set up his Swiss office of his business right here in our room. A lot has been happening here…

I have done yoga, sorted emails, done a sketch and started reading. It’s all the things I wish I get time for at home but never find the time.

At 2pm we went to the ‘clinic’ which is more of a stately home. We were met by lovely staff that made us feel really welcome. We met Prof Marco Ruggeiro who is a charming Italian. To being I had a full body ultra sound scan. Both Pete and I held our breaths as we hoped nothing sinister would be found. Our prayers were answers and actually the prof said my internal organs and lymph nodes under my arms looked great. Such a relief!

He couldn’t use sonography to look into my lungs. He wants to read the blood supply in my spleen as well as my pressure to tell if my lungs/ lesions are improving and are taking more macrophages.

I have been asked not to blog about my treatment at GcMAF. So I won’t detail exactly what I have been having. I can only assume it’s because of people comparing their treatments and the treatment is provided individually. The aim of the ‘game’ is to improve and increase macrophages which stimulate the immune system... There are a number of ways GcMAF /goleic acid can be administered; by injection, suppository in the rectum so the treatment works through the lover, by nebuliser and inhaling it into the lungs and eating it in a yoghurt.

Everyone’s treatment is different. I was weighed by a spectacular machine which told me my BMI, how many calories I should eat each day (2384) and it also told me my physical age... 33!Yeha! I’ll take that one.

Marco went into huge detail about keeping well with exercise, diet and supplements. He wants me to put on weight- mainly muscle and has prescribed me amino acids. 30 per day to be exact!

All in all it went well all except them requiring I stay until Monday. They want to treat me over the weekend too and then scan me on Monday. Initially we agreed but on trying to change flights, car hire, car park, hotel and work commitments the total additional charges would be about £2000!

I felt a bit annoyed at this as I had asked before I left if I needed to extend the time I had originally booked. They told me no. I will simply have to go without.

After my treatment the sun had shone and we headed to Lake Geneva to watch the sun set over the French and Swiss Alps... Absolutely stunning…..

                  

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Don't worry you'll get to the top soon!

by Claire2. March 2014 19:50

 

Today the weather has been lovely. So we took a drive Neuchatel, a beautiful chocolate box town that resides by Switzerland’s third largest lake. We were equipped in walking clothes and meant business…

The language here is predominantly French so it is hard to remember that we are not in France. Especially when surrounded by boulangeries, patisseries and so on.

The day started with tea and a croissant and we headed up to the local church. Everywhere here is hilly and by the time we ‘climbed’ to the church which has a beautiful view of Neuchatel both of our lungs and hearts were bursting out of our chests. We had to laugh when an old Swiss lady met us near to the top of the steps and said in French, ‘Don’t worry you will get to the top soon!’ Ha ha! We must’ve looked awful.

All I think is its fresh air, great exercise and I get to see the world and spend it with the man of my dreams.

After 2 hours walking by the lake we drove to Morat, an equally divine town bathed in history. Here they had a town oompah band really going for it! I had a little wiggle to it before we left to go ‘home’.

This evening we decided to eat in Lausanne again- boy walking to the Cathedral was such a challenge- my little legs.

Everything is expensive here. Time for bed…

 

 

                         

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Day one of our trip to Switzerland feeling nervous...

by Claire1. March 2014 20:41

 

The day started with my cat sat on my head licking my forehead. What a wonderful way to wake up! We headed to terminal five and caught our flights, then hire car to the hotel in Bussigny-pres-Lausanne, which will be our home for the next week. Thankfully the hotel is lovely (our room more so now we have a bath!)

I felt really nervous this morning. I’m finding it really hard to contain my feelings despite using breathing exercises. I feel emotional and tired. I’m physically over the sickness bug I’ve had all week and happily eating. We decided to be decadent and eat smoked salmon, drink champagne and do some luxury shopping... that calmed my nerves!

Now we are settled; lap tops set up, Wi-Fi connected and ready to go.

We are going to do a reccy and I think another early night. Tomorrow we are going to investigate the area and enjoy our weekend before the clinic at 9am on Monday.

Au Revoir!

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Ladies what lunch...

by Claire28. February 2014 19:36

 

Today was a real treat. For a long time I have been in contact with a lovely lady who contacted me through the blog. She is kind and helpful and up until now just hasn’t found time to meet. We don’t live a million miles from each other so for the first time we met over lunch. A friend of friend came too and it was so refreshing to talk openly about canSer. We are all on the same path, slightly different circumstances and stages and canSers but we are the same. We are driven, we are doing similar treatments and going to lengths many others do but thousands don’t. We have all been to see Doctor Nesselhut, are experiencing different drugs and have all had horrible stories to tell about how awful doctors have spoken to us because we don’t conform to their ideas. But then became amazed at results and the extension of life.

I felt inspired to keep trying. I was given advice on my trip to Switzerland for GcMAF and what to expect. It’s very helpful speaking to someone who has already been.

I have been ensured the Professor at GcMAF is great and could even help with looking at my scans. Well that would be nice!

We were gassing for hours before I knew it three hours had passed. How time flies!

Once back I had to get ready to travel to Switzerland. Kitty knows something is up. She plopped herself on my lap for a cuddle. Bless her. Luckily for me Kitty has a kind ‘aunty’ who takes care of her….

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A few turbulent days in Germany but well worth it..

by Claire26. February 2014 09:50

 It has been a hard few days. We left at the crack of dawn, well earlier actually, to get our flight to Hannover for our flying visit to Duderstadt for treatment with Dr Nesselhut. It was beautiful weather there and everything seemed great. We had good food and even better great company. On walking into our hotel we immediately met a wonderful Australian couple who were so pleased to speak to some English speaking people! Within minutes we had discovered that they were there for cancer treatment also. It was for their 29 year old daughter who has glioblastoma multiforme or GBM. This is a brain tumour that is aggressive and hard to treat and actually life threatening and shortening. Their daughter wasn’t given many months to years to live but defying all odds she is still well and all clear about three years on. This is down to her drive but also her families undenying love and passion to save her life. The father and mother have dedicated their lives to caring for her. Her father, Tony has done everything in his power and super skills at research to find the best possible treatments for her whilst her mother, Lyn has helped with injections and general caring. What a powerhouse. You can feel their love and boy you don’t want to mess with them!

Jenny, their daughter has had some radical surgery amongst some radical treatments but has come out of it well and currently all clear. That is why they were at Dr Nesselhuts' and the Hallwang clinic. Their research continues and the treatment is there to find out what is actually causing the canSer.

We felt honoured to meet and spend time with them. They were genuinely very kind and were sharing so much information. Tony thinks that canSer is caused by either a bacterial or virus within the body. It affects the immune system and hides there. So despite treatments to eliminate the tumour it isn’t curing the cause. And that is what they were on a mission to find out. Jenny has had the RGCC test and is finding that a virus is harbouring in her system. This really does resonate with me.

I certainly believe that our bodies created canSer therefore it should be able to get rid of it. Therefore an antidote or treatment to get to grips with those sneaky canSer cells would be logical.

On Sunday night after a lovely evening with my hubby I woke at 2am. I hadn’t been for treatment yet and was feeling very shaky and sweaty. I felt like I was coming down with the flu yet had terrible upset tummy and sickness. Our thoughts were food poisoning but Pete had eaten the same as me. Whatever it was it made me feel awful for a good few days. I was determined to have treatment but knew that having Newcastle disease virus wouldn’t make me feel much better. So for the last few days I have been a bit of a wreck. I haven’t been able to stomach anything other than green tea and water. (And even the green tea I think was causing me issues.)

Yesterday we met with DR Nesselhut Senior. He is simply such a lovely guy. He always seems so positive and explained that the vaccination I was having was quite a risky one. Now they tell me! Apparently research shows that the antibodies they were using in a larger dose caused 20% remission, 40% stable disease and 40% death! Oh joy... Pete and I looked at each other- telepathically thinking we have time to get up and run! He also explained that in that dosage the cost was 100,000 Euros. But then the Doc explained that in such a small dose the cost was clearly far less and the response would be completely different... they hope!

I didn’t run and I am still here currently fine...

We were advised when speaking to Dr Hembry last week that we shold mention ‘antisense’ to Dr Nesselhut. Not really knowing much about it we did. Here is a link to general terms of what it is; http://en.wikipedia.org/wiki/Antisense_therapy

He said that he didn’t believe that breast canSer was caused by a virus but more by a bacterial infection that goes in through the nipple. I guess that makes sense. But we all know that triple negative seems to be tricky and nothing is really the norm when it comes to TNBC.  That said I had my blood taken to have a range of blood tests to see if I have any virus harbouring inside my body. No doubt it will be pricey but it would be interesting to know what is happening inside of me.

We travelled to the airport and made our way home. I long for home when I feel poorly. My bed was calling me and after a (bad) night’s sleep I do actually feel better. I don’t have cramps any more but do feel a bit light headed. I don’t think I will be exercising today but I do want to start eating.

There is much to be done, especially for Pete. He is trying so hard to run his business successfully and raise enough funds for treatments. But it is all worthwhile. As long as I can stay well and have options ahead of me then its great news.

Dr Nesselhut gave us an analogy of the different kinds of input we as ‘incurable’ canSer patients are give from ‘regular’ doctors. A man wants to climb a mountain. At the bottom the guide says, ‘You won’t make it. Don’t risk it’. The man climbs and gets half way to a hut for a drink. The bar man says, ‘You won’t make it to the summit, you will never do it’.

But, what if the guide at the bottom says, ‘You can do this, you can make it to the top.’ Then at the hut, the bar man says, ‘you’re halfway, you can reach the summit, keep going!’

Dr Nesselhut became very animated and was very passionate about it. Bless him. We understood loud and clear what he wants us to do. I won’t give up. I just cope better when I’m not feeling yucky from a stomach upset!

All in all it was a very successful trip and the highlight was meeting our new friends. We hope to see them again someday with hopefully amazing news.

                                           
                                                Out for a lovely walk in Duderstadt.

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