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One to One service from the NHS.. new drugs and off to Germany! Always an adventure...

by Claire28. November 2013 11:34

 

I had another early start today. I had planned on it but didn’t think I would be awake at 5am! I couldn’t sleep... that’s unlike me.

It was good though because it meant I could do all my rituals before leaving for the hospital.

Despite my appointment being at 11am I chanced it and got there early. I felt a bit of pressure as we leave for Germany today by car!

Luckily my plan worked and I was seen by a lovely nurse called Jacqui. She took me to an interview room where I was given 4 bags 9of medication! She explained fully how it all worked and when to take the tablets.

I am now on vinorelbine. The oral tablets are the same as what they would inject into to me. The up side is that I don’t take massive amounts of tablets every day. I take 100 mg on day one, day eight and day fifteen. Then I have a week off. I have blood tests 2 days before each tablet.

Jacqui explained that my immunity is likely to drop around day seven and eight. If my blood count is ever too low then I miss the next tablet. I was very impressed with this one to one service and feel confident with it all.

I had a blood test then got home as fast as possible. Pete was there ready and we got our road trip to Germany.

The trip was fine but tricky in the dark and not helped by the roads being closed but by 9pm we arrived in Dusseldorf, our half way overnight stop.

Being inquisitive we ventured to the Old Town and got a feel for the city. What a beautiful place! Made even more beautiful by all the Christmas lights... OO..

 

During the afternoon I noticed a lump on my arm below the point of having my bloods taken. I have amazing veins and there is no trouble finding bulbous ones to draw blood from. After a while the lump went and I am now left with a bruise on my forearm. I guess my vein has been damaged somehow. Youch!

Pete’s been great as usual. Getting us to where we need to be... On our way already to Duderstadt for our appointment to both have our bloods taken for dendritic and gamma delta cell therapy. We thought driving in the daylight would be better... um we have fog and rain Ha ha! Always an adventure!

Light and love... X

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Triple Negative

Fermented foods are good for your gut....

by Claire25. November 2013 13:46

Morning! I am feeling particularly spritely today despite a bad night’s sleep. I go on a lot about sleep but it’s so important in keeping healthy. The way I see is that I can go to bed early tonight so let’s fire on all cylinders today.

I have used my morning wisely by meditating, doing 15 minutes of yoga followed by 40 minutes of rebounding then after having a green juice and supplements I had a coffee enema and cleared my sinuses using the neti pot with Himalayan salt.

I am a tad excited. This weekend I had friends visit us whom we met in Ibiza. It was brilliant to see them and catch up and I didn’t even drink any alcohol. That’s a first for me.  I’m also excited as we go to Germany on Wednesday to Dr Nesselhuts clinic to have both our bloods taken for the next round of DC therapy. I still have many unanswered questions following my last visit but I guess I will have to wait until I get there.

I am feeling really buoyant at the moment. Things are sorting themselves out. Little irritations like skin rashes and spots as well as Candida in the mouth are all going away on their own. I can only hope it is because I am being good to my body. 

Last week during the recovery of Candida I did some research into gut health. Little did I realise how good German cooking is for me! Being married to a half German I had always embraced his traditions but was delighted to find out that sauerkraut is so very good for you. Thankfully we had a big jar of sauerkraut sitting in our cupboard which my hubby made into a tasty supper.

It seems like every day, another scientific discovery is made showing the link between the bacteria in our gut and the health of the rest of our bodies. The best way to boost your gut bacteria is to consume nutrient- and probiotic-rich fermented foods. Here are just a few reasons why you should add them to your diet:

Fermented foods improve digestion. Fermenting our foods is sort of like pre-digesting them (sorry about the mental image!). That makes them easier to digest, and easier for our bodies to absorb their nutrients.

Fermentation actually makes foods more nutritious. On top of the fact that we can more easily absorb their nutrients, studies have shown that traditionally fermented dairy products actually provide more vitamins than conventional or even raw milk. (of course I don’t consume dairy but this is still an interesting fact for those of you that do) Veggies, fruits, beans and grains also become more nutritious after they ferment.

Fermentation also helps get rid of anti-nutrients. Fermentation helps eliminate phytic acid, an anti-nutrient that hangs out in grains, beans, seeds and nuts. Reducing the phytic acid makes it easier for our guts to absorb minerals, so you get more bang for your buck.

‘Sugar and refined carbohydrates cause damage while fermented foods heal.’


Fermented foods;

Sauerkraut
Sauerkraut is finely cut fermented cabbage that is packed with vitamins C, B and K. It also contains a ton of probiotics, including leuconostoc, pediococcus, and lactobacillus. If you’re buying sauerkraut at the store instead of making your own, make sure to choose unpasteurized brands (they should be in the refrigerator aisle.) Pasteurization kills all the helpful bacteria.

Miso
Made from fermented soybeans, miso is a very good source of manganese, zinc and antioxidants. It’s often used in soup recipes, but it can also add flavour to other dishes

Coconut yogurt
Coconut yogurt is packed with probiotics, and since its non-dairy, it’s a lot easier to digest than conventional yogurt. Coconut is antiviral, anti-fungal and antibacterial, plus it's high in electrolytes, calcium, potassium and magnesium. 

 

Pickles
Pickles are filled with active bacterial cultures and enzymes. Like sauerkraut, make sure you purchase lacto-fermented pickles from the refrigerator section, not the kind made with vinegar — they may taste similar, but they don’t have the same health benefits. And remember to drink your pickle juice!

 
With all this in mind I happily chowed down a huge helping of sauerkraut last week and aim to introduce fermented foods into my diet more readily. I’m going to go and make a miso mug right now!

                                           

 

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Triple Negative

Another new experience- hyperbaric oxygen therapy.. and breathe!

by Claire21. November 2013 15:02

Today I did something new. I experienced hyperbaric oxygen as suggested by Patricia Peat. I visited the MS therapy centre near my home and was greeted by some lovely men and women who all suffer with MS. I was a bit nervous as expected. It was a bit strange to say the least. My mask didn’t fit exactly and I didn’t really know what to expect but now I am home and have time to reflect I can say it was actually a painless experience. I sat in a pressurised chamber for an hour whilst breathing oxygen through a mask. I have to admit I did have a few moments of panic but that is me and wanting to control everything. It’s happened ever since I had an MRI scan. When I am told I can’t move or do something for an extended length of time I get all panicky and want to get out there and then but I calmed myself down. I took books with me to read and took the opportunity to catch up for an hour. The problem was I needed the toilet hallway through. Ha ha! I crossed my legs and wished the hour away.

The only sensation I experienced was similar to being in an aeroplane when you take off and land. Your ears pop and you simply have to equalise them. I have rebooked but initially I thought it wasn’t for me. Foot in mouth

 Despite the view from Prof Harris that it could actually encourage canSer cells to grow because they like the oxygen I have some research from this year that suggests that hyperbaric oxygen is great at combating canSer. Here is a link to the research;

http://www.sciencedaily.com/releases/2012/05/120503194219.htm

 

What is hyperbaric oxygen?

HBOT delivers 100% pure oxygen to you through increased atmospheric pressure in an enclosed chamber. When oxygen is delivered at higher than normal pressure, your body is able to absorb more O2 into your blood cells, blood plasma, cerebral-spinal fluid, and other bodily fluids.

Once in the chamber, your body responds by reducing inflammation. And with reduced inflammation, blood flow increases to oxygen-deprived areas.

Besides reducing inflammation, HBOT also:

  • Saturates your body with oxygen (including the plasma and white cells), increasing your oxygen level by 20-30%
  • Increases your ability to fight infection
  • Creates new capillaries and increases blood flow
  • Clears and deactivates toxins and metabolic waste
  • Stimulates your body to create new blood cells
  • Increases your stem cell production 800% (after 40 treatments)
  • Accelerates your rate of healing

 

What is hyperbaric oxygen therapy used for?

HBOT treatment can help in a number of different situations where body tissues have suffered from a decrease in oxygen levels. These include:

  • decompression illness ('the bends')
  • severe carbon monoxide poisoning
  • smoke inhalation
  • chronic wounds and some infections
  • wound healing after reconstructive surgery
  • radiation necrosis (body tissue dying off after radiotherapy treatment)
  • acute blood loss where a blood transfusion is not possible (for example, for Jehovah's Witnesses)
  • sports injuries
  • diabetic foot ulcers

    What does HBOT do for cancer?

Hyperbaric oxygen tackles two major characteristics of cancer that make it dangerous and likely to spread.

  1. Cancer thrives in a low O2 environment, and hates higher oxygenation. It is well documented that a body low in O2 prevents optimal uptake desired from other treatments, both chemotherapy and natural supplements.
  2. Cancer thrives in an acidic environment, so the more alkaline your system, the more resistance you provide to your cancer cells.

One of the major benefits of hyperbaric oxygen is to reverse the common condition of hypoxia (sometimes called hypoxemia) — or, inadequate oxygenation of the blood — that's so common among cancer patients.

Breast Cancer

A 2007 animal study found that hyperbaric oxygen helped prevent or reduce breast cancer metastasis to the lung.3

3 Haroon ATMY, Patel M, Al-Mehdi AB. [2007]. Lung Metastatic Load Limitation with Hyperbaric Oxygen. Undersea Hyperbaric Medicine, 34:2, 83-90.

And in general…

HBOT saturates your blood plasma with oxygen, reaching the areas of damage/injury more efficiently than red blood cells. It provides all your cells and tissues with oxygen — your body's much needed healing agent.

Hyperbaric oxygen increases the number and actual size of blood vessels in your damaged tissues and wounds, allowing you to heal faster.

Cells involved in the healing process are highly dependent on oxygen to heal… and that's exactly what HOBT supplies, by way of blood that's hyper-saturated with oxygen.

HBOT has often been used to help cancer patients after a round of radiation therapy. Radiation damages both cancerous cells and healthy ones, and the burst of oxygen helps heal the damaged cells.

A growing number of conventional doctors acknowledge that HBOT is a beneficial adjunct to chemotherapy, as they believe the pressure pushes the drugs deeper into your system… although there are still doctors who insist you shouldn't do chemo and HBOT at the same time.

 
You may be thinking that it is another cost but it is actually very cheap. As the centre I go to is a charity they only charge £15 for the hour and they are lovely bunch of people. I feel they are going to be my new group of friends! All a bit elderly (some deaf and wearing their clothes in a funny order but nevertheless adorable) I am going to take them some cakes next week. Wink

In order for me to start having HBOT I had to complete forms and send them to my doctor for him to approve first. This for me was actually quite easy as my doctor called me and asked how I was. He is very cool and signed it off for me immediately.

Anyone locally who wants to give HBOT a go here are the details for the centre;

http://www.omstc.org/about/

 On a more sombre note, yesterday Pete woke to an email with some very sad news. A couple, whom we had befriended after I appeared in the newspaper, had been contacting us as we exchanged information and advice. The young woman, wife and mother had two very young children and sadly were diagnosed only in February this year with TNBC. By July it had spread to her lungs. She was undergoing chemo and approaching other options with gusto. Sadly she had heart failure that night as the progression of canSer had been very strong in her lymph nodes. We are both hugely saddened at this news and wish her family our deepest condolences at this terrible time.

Scary how things can change..... I stay optimist though that my journey and path is clearing every day and I continue to strive to become stronger and just hope that if I haven’t found a formula yet to kick canSers butt that I will one day very soon (please, thank you!)

 

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Triple Negative

I didn't think I'd say this.. but brilliant meeting with the Prof today!

by Claire19. November 2013 17:55

 

Today Pete and I had to be at the hospital bright and early. We were both a bit nervous. It was an odd feeling as we have already had the CT scan results so neither of us could place what we were nervous about. I know why I get anxious. I dread seeing Prof Harris because I feel that I can’t confide in him and that he will disapprove of the other treatments that I am having. I hate feeling like that. I want an oncologist who is my confidante. That was probably the reason for the anxiety and nervousness. Nevertheless both Pete and I were full of smiles and huge ‘hellos’ when Prof Harris came in to talk to us. He looked very smart today in his favourite leopard print tie. (I can always tell it’s going to be good when I see him in that tie! Ha ha!)

Well let’s say I was bowled over by the meeting we had with him. He discussed the fact the tumours seemed larger but are still very small and I am still in a better position now than this time last year. This surprised me as I expected him to say that they are growing and fill me full of alarm. But no...

He explained the options open to me and explained exactly how things worked on a cellular level and what each treatment would do specifically. He has never gone into such detail with me. It was hugely refreshing. I actually felt  the NHS mantra which says 'No decision about me, without me’. For once I was able to consider what he was saying and he didn’t cast aspersions. He was open to discussion and we felt very comfortable in explaining to him everything else that is part of my treatment plan including the treatment in Germany. He jotted down notes on exactly what I have been given and even to the extent of supplements. I told him I take metformin and he said they had done a study on it and he approved of its usage.  I felt lifted and really happy. What a difference it makes to be involved in the decision making process. He gave me two options with regards to chemotherapy; one being an oral tablet and the other being intravenous. He was opting more towards the oral version which really surprised me. I said that I had heard that low dosage chemotherapy had been coming up in our research and he said that’s exactly what he thought and why he had suggested the oral tablet.

The chemo options were vinorelbine which is a part of the taxol family. It derives from the plant periwinkle. It works by stopping the cancer cells from separating into two new cells. So it blocks the growth of the cancer. This drug can be given intravenously as well but I am so thrilled to be offered it as a tablet. The regime is different to the current drug I have been on and it does mean having blood tests more often but that’s fine by me.

The other option was carboplatin and gemcetibine. We have heard this is a great combination but something I didn't 'want to consider at this stage mainly because it is given intravenously and I don't really want to lose all of my hair a right now if I can help it.

I can honestly say I have never felt so lifted after being to see Prof Harris. It has kept me on a high all day and now I don’t feel quite as gloomy as I have been over the last few days.

It seems that the hope of the treatment that Prof Harris administers is to get the cancer to reduce or become stable giving me years ahead. This is why he said there are many options yet to go. Unfortunately they are all chemo but who knows what may happen in between.

We did ask about having a PET/ CT scan but he said that all cells would take up the glucose and we wouldn't be able to differentiate between them. That's a shame...

He said that the German treatment even if it isn’t working may well be making me feel really well and that is a bonus. He also said it has been scientifically proven that staying positive elongates the life and gives a much better outcome. So we heard from a scientist being hopeful and staying positive is good for our health! Love it!

Off I skipped from hospital to have a session of pranic healing. I really like seeing the therapist. He is so calming and gives me so much hope. He seems to feel that this disease will recede as I get stronger. He already feels that removing the rings has made a big difference and will continue to. Whatever you may think of it, the treatment always gives me physical reactions. I had a fluttering in my side and Les said that he had been working on my liver as it felt full of toxins. I also had a mad thumping feeling in my back and it was just where he was working. He explained that the ring fingers are a direct route to my heart and lungs and where I had been wearing the rings with diamonds on was harnessing a grounding sensation and making the canSer stay. It all sounds mental but I am convinced by it!

If that wasn’t lovely enough I then drove to have an acupuncture session. It has been six months since I saw Michael. It was brilliant to catch up and even more relaxing to have a treatment with him. He reduced heat in me which is usually manifested by chemo and anxiety.

So I am now home and feeling pretty happy with myself. I feel back on track and raring to give it my all.

Having that meeting today with Prof Harris is just what I needed. I needed to know I have a team that works with me and is open minded to everything I am doing. I never thought I would get it from an NHS doctor but I am thrilled I did.

I have felt grateful all day. No one day is ever the same and no one ever knows what may happen. That’s the beauty of life I guess. I live for these days.

I just want to add that yesterday I was very touched when a friend has offered to give me all of the commission she earns from work to me, to use either for treatments or to donate to my charities. WOW! I am so overwhelmed and have to admit I had a little tear. People's generosity astounds me. There is so much good in the world when you are open to give and receive love.

I'm feeling the love everybody!

Innocent

 

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Triple Negative

Where thoughts go, Feelings grow and Actions follow...

by Claire17. November 2013 16:22

Friday I had a lovely time with my friend at a Christmas fair at Blenheim Palace. You may think it is too early for Christmas.. but no, it's never too early! I had time to focus on fun things and think about giving to those that I love. I never see present buying as a chore. I love giving. To be honest I get more out of it than the recipient does. That’s good for your health. I know it. Much like volunteering does too.

I have been thinking over the last few days about what I really want from life.  My friend said that where thoughts go, feelings grow and actions follow. Therefore thinking and projecting what you want out of life should eventually happen. If I keep living in fear and giving canSer my energy then it may never release. It may respond to everything that I am doing but if I don’t truly believe that it will be gone then the chances are it won’t be. I have to admit I have been struggling with this. I think I am have been thinking all positive things but I guess I am a dweller at times. I am stuck in a rut.

So what can I do to get out of this rut? I have been asking myself over and over what would I be doing if I didn’t have canSer? All sorts pop up for me such as refresher training in reflexology. I am inspired by my therapist. She is awesome and so spot on with things. I would work more and get fully stuck into my own business. Of course I will be qualifying as a health coach next October and with a business name such as Live Love Glow it is perfect for health coaching which includes giving nutritional advice. Before getting stuck into working I would love to have some time travelling for a month or so. There are so many places I would like to see and to be able to have that time off would be amazing. Another of my goals would be to have a baby, if that is possible at all. I feel there is something missing in my life and I have so much love to give. I am sure that I would feel complete with our  very own baby. As well as this we have always spoken about getting a dog. The most obvious goal is to be involved in helping people with TNBC. I want to continue raising funds and also somehow help survivors with raising awareness.

There are so many things I want to do ... but then I read it all back and think to myself, what’s stopping me from having those things now? Of course having a baby isn’t an option whilst I have a life threatening illness. But the rest are doable if we weren’t restricted by funds and time commitments what with having treatment and so on.  So that gives me something to look forward to. I can imagine being canSer free.

I understand what my friend is saying though. The body cannot differentiate between what is real and what is imaginary. If you have thoughts, feelings are evoked and the body believes it is real. Just like watching a movie. You get involved in it and the feelings are evoked by what you see. The body eventually realises what isn’t real as those feelings subside. But I know I want to be canSer free, however if deep down I don’t believe I ever will be then the chances are I won’t ever get what I want.

It is harder than it seems to change all the thoughts that naturally arise in my head. This is such a mental game that I really think I will have to work on. Meditation is great for helping you heal your mind and body. The relaxation that occurs is essential in the body repairing itself. I can understand though what my friend means about keeping canSer alive. I constantly post things on here about canSer and it’s always at the forefront of my mind. I guess I will need to start posting about different things other than canSer.

 

New Developments:
Recently we were in touch with a couple who are in the same boat as us. They too are troopers and have been doing everything in their power to beat TNBC. They have gone down the route of tumourgrafting to establish what chemotherapies will work. Having approached the same company it seems that they graft a fresh sample of the tumour onto a mouse and grow it for 12 weeks. Once grown they test different chemo’s on it. It’s self explanatory really. I have been informed that I cannot do this as they need fresh samples. Of course I do not have any tumours to get to.
If anyone would like to contact them for more information here is the website link;
http://www.championsoncology.com/

This does not deter me or upset me. I have been doing well for over a year now and can only continue with what I am already doing. There are always other options that may work so for now I will focus on those elements.

This weekend has been tough for both Pete and I. Pete is still in a lot of pain after having mouth surgery this week and I am feeling and living his pain! There have been many positives and I always thank the Universe for the small miracles. I hope that there may be many more.

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Triple Negative

PET scanning is really good for TNBC.....

by Claire14. November 2013 12:30

 

 

I had time on my own last night to soak in the detoxifying tub that I had drawn.  Sometimes when I am alone I think too much so I put on some Adele and sang along with her for while before really trying to tap into my gut feeling and intuition. I have been trying to understand what is really happening to me and which direction should I take.

I am feeling a little frustrated with all canSer related people at the moment. It seems getting answers to thins is such hard work and like getting blood out of a stone. This includes the NHS, the private doctors, the German doctors and even people I am contacting for the first time about potential new treatments. I feel like I am a nagging whining pain in the butt. Part of me thinks I shouldn’t have to keep pounding and trying to get the full picture. It amazes me that this isn’t obvious to all the canSer specialists I am contacting. Someone like me, and there are many of us, want detail especially when it comes to alternative and complementary treatments with very little evidence to show they work.

It is very hard when within this worlds not to get taken advantage of. It sounds sick that someone would even do that to a canSer survivor but they do. They think just by saying it will work that you will hand over your hard earned cash there and then. I know my patience isn’t the best but I do have standards and simple requirements and I don’t feel I am getting taken care of. I deserve better care. The reason for this rant is because apart from many emails I received with little or no information in yesterday, I had received one from Dr Nesselhut's office stating that following the scan results that the next time I go the protocol will be changed again. NO reason why or what to or anything. I have to know what he means! I want to know what he expected then. Should there have been a marked reduction in size of the tumours? I was led to believe that the increase in the tumours could mean that they are gamma delta cells clinging onto the tumour. That would explain the increase in size. So here I am left hanging again. Now I think all this wonderment can amount to anxiety and stress which we all know is not good for canSer survivors. Picture this I am thinking all of this in the bath... so luckily I felt chilled all at the same time.

It got me reading and thinking and I remember that a lovely person had emailed and does regularly after having read my blogs offering advice. She said that I should ask for PET/CT scan as they can give more detail. I know my hospital does them but I didn’t think much more of it. Until now. Pete contacted his good friend who is a scientist and doing a study on PET scans and the fluid used to light up the canSerous tissue. He sent lots of info and confirmed that PET scans are very good for triple negative breast canSer and not positive breast canSer. Apparently the cells are different with TNBC and the use of a PET scan could indicate its spread much better and earlier on than a simple CT scan. Blimey if they know this why don’ they use this on all TNBC patients immediately?! It could stop the spread or catch it quickly. PET / CT scans combine both a CT scan and PET scan.  PET scans mean the patient has to have a small amount of radioactive material injected into the body. Pete’s friend assures us that it so small it really isn’t anything to concern ourselves about. The great thing is that a PET scan can actually show the difference between scar tissue and active canSer cells.

Here is more detailed information;

A positron emission tomography (PET) scan is a unique type of imaging test that helps doctors see how the organs and tissues inside your body are actually functioning.

The test involves injecting a very small dose of a radioactive chemical, called a radiotracer, into the vein of your arm. The tracer travels through the body and is absorbed by the organs and tissues being studied. Next, you will be asked to lie down on a flat examination table that is moved into the centre of a PET scanner—a doughnut-like shaped machine. This machine detects and records the energy given off by the tracer substance and, with the aid of a computer; this energy is converted into three-dimensional pictures. A physician can then look at cross-sectional images of the body organ from any angle in order to detect any functional problems.

What problems can a PET scan detect?

A PET scan can measure such vital functions as blood flow, oxygen use, and glucose metabolism, which helps doctors identify abnormal from normal functioning organs and tissues. The scan can also be used to evaluate the effectiveness of a patient’s treatment plan, allowing the course of care to be adjusted if necessary.

Currently, PET scans are most commonly used to detect cancer, heart problems (such as coronary artery disease and damage to the heart following a heart attack), brain disorders (including brain tumours, memory disorders, seizures) and other central nervous system disorders.

How is a PET scan different from a CT or MRI scan?

One of the main differences between PET scans and other imaging tests like CT scan or magnetic resonance imaging (MRI) is that the PET scan reveals the cellular level metabolic changes occurring in an organ or tissue. This is important and unique because disease processes often begin with functional changes at the cellular level. A PET scan can often detect these very early changes whereas a CT or MRI detect changes a little later as the disease begins to cause changes in the structure of organs or tissues.

I definitely think that I am going to ask for PET/CT scan when I speak to Prof Harris next. Maybe this could give me clarity on what’s going on inside me.

 

I decided in my bath that I still feel I am going down the right route with all my treatment choices. I just feel a little perplexed as to whether I should consider having mistletoe treatment, high dose vitamin c and cannabinoids etc. This list is endless. I don’t want to make my life more complicated but I want to have a life! I have to be honest I still have fleeting moments of visions in my mind of what it may be like at my funeral. I know, morbid eh? But that’s natural I think. I have had a very big wakeup call again and that all that fear of death is knocking at my door. What I want is to trust one integrative doctor and have them help me rather than trying to piece everything together ourselves.

I spent time in the lovely hot aromas to do some visualisations. I thought me hoovering the tumours up were going to crack it but then I started to ponder that maybe I am hanging onto the canSer. Maybe I should just imagine not having it all. If I let it go and don’t believe in it anymore is that going help get rid of it? I then thought of the Never Ending Story. In the movie the little boy has to be believe in it or the whole of the Universe disappears. Of course in the movie the little boy has to really believe in it for it to be saved but if I completely disregard it I can imagine the canSer just falling apart and disintegrating.

All this sounds mad but it is known that the mind is a powerful tool plus it gives me some kind of comfort and control.

IN the last week or so I have also heard and read a lot about low dosage chemotherapy. There is a theory that battling the body hard with chemo just makes the canSer more aggressive and mutate quicker. There is also the theory that if you have insulin injected into your body that has been starved for a few hours that the canSer quickly takes up the insulin. Then following that a low dosage of chemo is injected which goes straight to the greedy canSer cells and killing them. This makes sense really and I like the sound of low dosage chemo. It reminded me that Dr Nesselhut said to reduce my chemo tablets. As per, he didn’t explain as to why and I have to admit I didn’t reduce them. I felt more comfortable taking the proper dosage but maybe he was right. Something else to ask him!

By the end of my bath time I felt better. I felt that I must continue and it all will become clear.I have faith. I jsut need to remember that.


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Triple Negative

What has changed since yesterday really?

by Claire12. November 2013 17:57

 

So yesterday I had the results of my scan as you know if you read the guest blog by the Bear. I have to admit I had a heart flutter the moment I saw the email with the results in it. That rush of adrenalin that makes you shake and feel sick. I suppose part of me wasn’t surprised. I am ever hopeful that the results will be amazing but sometimes I am just living in a dream world.

Pete had prepared me for the worst as he expected things to look larger as they did last year when I had just started DC therapy. Starting GD therapy in August and then again in October was clearly going to have an effect. I suppose I just thought it would be smaller or gone. I guess I am hoping for that miracle to happen. Talking of miracles I also hoped that John of God may have done his thang. You never know he may have. There is no way of knowing if in fact it was larger or indeed spread more and this is in fact good news. But I guess I will never know that.

Today is like every other day. The results weren’t what I wanted to hear but other than that was has changed? I am still feeling as great as I always have. I exercised, meditated, did my usual morning rituals and got on with my day working and taking and collecting Pete from hospital (Yes it was my turn to take of someone for a change rather than be the one taken care of!) That’s what I need to remember. That it realistically is only a piece of paper that has some rather abstract detail on it that they presume is disease progression. Of course in the NHS’s eyes that is what is happening. They can’t differentiate between cancer cells and the gamma delta cells.

On the same day as my results I received a book in the post that I had ordered from Amazon. (They must love me. I spend so much money on Amazon!) It is called Mum’s not having chemo by Laura Bond who has a blog in the same name. It details all the research her and her mum did during her mum’s time having ovarian and uterine cancer. She went to every corner of the globe to find out the best alternative treatments. I have only read a few chapters but it has given me a spark to contact some of the doctors she has spoken to. Some of the doctors, for example, do blood tests to see what treatments will work on your kind of cancer as well knowing what herbs and alternative treatments can work for you. This is just the tip of the ice berg and I cannot wait to read the rest of the book. The problem is that I must read my current book first. We made a decision at the weekend that we are going to go to be a bit earlier than normal and read for half an hour. It is actually quite calming. Better than watching TV before sleep.

So how else have getting those results made me feel? I guess initially I cried and felt despair. It brings homes the stark reality every time that I actually have a terminal disease. The fear and worry of getting ill and dying comes flooding back. I try not to feel that way but lets' face it I am human... I think.

Pete as usual was brilliant and kind of without making me feel bad, said ‘I told you so....’ well almost but not in so many words. And I have to admit I guess I was prepared for the worst in a way.

When you get news like that you can’t help but play over the last few months and wish if only I was better. Better at being ‘good’ with my diet and so on. But the fact that the tumours appear larger could be great news for me. It could mean that the tumours are being inundated with GD cells and like before they are going to killed and reduce in size. This time though I expect them to better, I expect the tumours to be gone completely.

So off I trot on my usual path but now with a steely determination that this is finally going to be it.

I won’t rest on my laurels though. I am already contacting doctors in Japan, Germany and America about possible directions to go down and ways of finding out what will help me. As well as this I am booking appointments with doctors here in the UK for consultations on things like mistletoe injections, high dose vitamin c treatment and of course I am booking to have hyperbaric oxygen treatment as soon as possible. So, that on top of what I am already doing will hopefully kick this disease in the butt.

I guess why I was so upset yesterday is that I honestly believe in my head that I am going to be free of canSer. And that is the only thing to think; to have a good life and to really love life there is no other option. But the cruel reality scares me and I hate thinking of what is a very likely outcome for most people in my position.

Thankfully life propels forward and I don’t get too much time to dwell on it. It’s not possible with a Bear snuffling down my neck looking at me with those big hazel eyes. Bless him. What would I do without him?

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Triple Negative

Bear Blog...

by Claire11. November 2013 20:31

Claire has asked me (Bear) to guest blog today. We had the results of last weeks scan and we have been reminded in cold, unemotional science script that we do not have the answers yet, to the question "How do you beat canSer".

The radiographer has told us that the main tumour has doubled in size and that the lymph tumours have grown "in the interval". This has come as quite devastating news and shows a definite progression of the disease (as the report stated). Claire is devastated and feels that she can't be strong anymore and that old enemy "worry" is front and centre with his hideous henchman "it's not fair".

So I thought I would take the report apart a bit and see what happens when you put some specialist thinking to it, rather than the more focused and process driven view of the lab tech.

So firstly the hidden in the report is the following:

Claire's liver and kidneys are entirely disease free
There has been no reoccurrence of the fluid on Claire's heart (pericardial effusion)
The pleural spaces (membrane around the lungs) are disease free
Claire's neck and armpit lymph nodes have not enlarged at all and this means disease free

So to the "bad" news. The lung tumor has has rapidly doubled in size, but remains in isolation. We have been told and even seen in previous tumour death (lymph tumour last May ) that the canSer seems to grow rapidly. This can be caused by both a defence response and more impart antsy by the good cells attaching to the tumour as they attack. Previously this was the canSers last death throw before necrosis And disappearing.

You can shoot an arrow without pulling the string back and Dr Nesslehut even described this process in our last consultation. His Swedish understudy in broken English described the administration of Gamma Delta cells as the final blow to kill the canSer and it seems likely that this is what we are seeing by the major reaction so shortly after the GD cell therapy.

Oddly enough the pranic healer was very specific in telling Claire that the canSer was weaker than before her last scan and she was getting better in her lung. The irony of the Universe never ceases to astound.

This aside the tumour is also described as "the right upper lobe" "previously described as lower lobe lesion" - sound like it's running scared to me!

As for the lymph this is even more astounding. Back in February the tumour was described as growing very quickly. We applied the above theory and sure enough in May it was completely gone not even mentioned. since that time no lymph canSer has been reported until now when, the detail actually does not state that canSer has caused the lymph swelling and in fact the main reason for this could be an auto-immune response!!! No idea what could be causing that when Claire has been pumped full of immunotherapy ( it is especially caused by detection of something foreign in the body, like Mr Bruce MacKay's cells for example) - so in actual fact pretty good news as it shows the therapy is causing a response.

So should we be sad, is this a set back? In truth I can't say, but the evidence seems very strong that this is possibly the best news ever. That my beautiful wife is about to become my amazing miracle and if we a really give this canSer hell, if we choose now, to kick it hard, bring new treatments to bear and persist in making Claire's body the worst place to be in the Universe for canSer to be, then my next blog will be the happiest moment of my life.

Needless to say, if you knock us down it's going be a big problem, because we come back twice hard and really vexed.

Thank you so much for every single positive thought and will - love & light

Bear

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Three days of fun to take my mind off the wait for the results...

by Claire11. November 2013 12:50

 I had a lovely few days to end last week. My mum visited and we went to see a musical, Cabaret, in Oxford. During the day we had our hair cut and did some shopping then had a lovely meal before watching 2 hours 20 minutes of pure brilliance. I think it was the first show I have watched and haven’t got bored half way through! I'd highly recommend it.

The fun didn’t stop there. Friday, my mum, my good friend and I drove to Southampton to a charity event for Action Medical Research which was hosted by Davina McCall. As everyone knows I love Davina. She is so vibrant and bubbly. Luckily we all got to meet her and had photos taken. She was so lovely. I wanted to have a photo with her on my own so went back for a cheeky second image. She remembered me from all the other hundreds of people and asked if I was with my mum. She said Mum looked amazing in what she was wearing. I didn’t get to talk much to Davina and so wanted to talk to her about her exercise DVD’s and this blog. Still she was so inundated with other women it couldn’t be helped really.

The event went brilliantly and we have decided we would like to take part again next year. It is nice to think about things other than canSer.

As if that wasn’t enough there was more fun to come! Saturday Pete and I took our four good friends to Twickenham for the international rugby match against Argentina. The day was a bit sodden but it stopped raining in time for the match to start. Apart from being a bit chilly it was an awesome day. More so because we won! Yeha!

It was a whirlwind and almost like a holiday. It felt odd having so many days off but probably quite good to keep me occupied what with waiting for scan results.

I feel quite calm about it all. I have no idea at all as to how it is going... Pete says that looking back on past scans when we starting dendritic cell therapy the tumours appeared to grow quite quickly but we believed they may have been enlarged from good cells trying to kill the canSer. In the back of mind I wonder if I have done enough. I have been slack with diet and alcohol what with so many trips away and generally having a nice time. But I do think that I may need to have a good time without those things. I know it’s possible and I know I can do it. I just wish I knew what makes canSer change and grow.

I have looked into so many alternatives recently such as the fermented soy and the cannabinoids but I am not overly interested in them. I really want to believe that the DC therapy is the right thing for me. Whatever the outcome I still feel well. I have to hang onto that. .. We will find out soon....

                                          

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Triple Negative

Had a call from my GP to see if I'm ok.. how nice?!

by Claire6. November 2013 15:29

 

After my lovely relaxing evening last night I had a wonderful sleep although I did dream about vampires?! Not sure what that was about? Anyway brushing over that I have noticed that I am feeling much more motivated to get up in the mornings rather than lie in. I feel that getting my rituals done earlier would make me feel better and I actually feel better for jumping up out of bed when pet e leaves for work.

This morning I did the 'twin hearts' meditation that was given to me by my pranic healer. I had to do some exercises first to warm up the energy then I followed the instructions of the guided mediation to give love and peace to the whole world. It finished with a smiling and opening the eyes. What a lovely way to start the day.

I have been working on my nutrition course today and I feel quite organised and proud that I am systematically using my time wisely. I don’t want to allow myself to feel over whelmed.

I don’t if it’s from having the pranic healing but I do feel less worry today. I feel certain that I am going to beat this. I like feeling like this. Long may it continue...

I had a telephone call from my GP today. He called as I have asked him to sign a consent form for me to have hyperbaric oxygen therapy. He said that he had seen me on TV and asked if there was anything he could do. He said I seem to be getting on just fine and that if I ever need a chat or to see him that I should call. I thought how lovely it was for him to actually call me. He didn’t need to. I feel touched-A nice warm fuzzy feeling.

Pete and I have been exchanging a lot of information with another TNBC survivor recently. It is amazing how similar we are and the lengths that we would go to overcome this disease. I am so proud of my Bear. He works so hard and then researches in his spare time. I honestly believe without his support and intelligence I would not be as well as I am now. I’m a lucky girl...

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