Love today, not tomorrow

Before our journey began today I emailed Professor Dalgleish re my scan results and meeting with the doc re the trial.

 

He says that it is usual to expect some progression and it’s very common for nodes to swell reactive with cancer cells in the same region. He said the necrotic node could be a sign that DC and NDV are already working. He advised that Carboplatin and Gemcetibine would work well along side immunotherapy. It’s great having Gus Dalgleish reassure us. I’m very thankful for that.

 

Ellen Copson, another of our specialists, told me that she I’ll refer me to a top breast cancer specialist in Harley street too.

 

As Pete says if anything this has just made us readdress the situation and get even more focussed.

 

We talked a lot on the journey today. My heart feels heavy and I can’t seem to ‘live’. Everything I’m learning says to feel ‘love’. Love today, not tomorrow. I get it but I keep forcing cancer back into my thoughts. Pete feels a bit the same but is so clever. This situation is really teaching us that now is important and that we will deal with things as they arise.

 

Right now I feel great. Apparently I look great. So I have to buck my mind up!

 

Arrived at our hotel with fires engulfing Marbella-Bugger!

 

I may not write much for a week. Time to focus on me and my Bear.

X

All packed and off to see friends get married

Again today started with the feel good factor. Since the last round of chemo my finger nails have practically fallen off. As we are attending a wedding next week I decided its about time to feel ‘groomed’ and girly again. They look great!

 

I then had to go to hospital to meet a doctor to discuss a possible trial. The trial combines two well known chemo drugs Cisplatin and Capecitebine with a new drug. The trial is phase I and it’s call a FACING trial. The aim is to see how the new drug reacts with the other two, the side effects as they increase the dosage.

 

They would need to do lots of tests to begin with; liver and kidney function, blood tests etc. 3-4 days to begin then monitored weekly initially. I told the doc I’m going to be away quite a bit and I’m not prepared to forfeit life over the trial. He understood. The alternative is standard chemo which is to be discussed with the oncology team. At this point I’m feeling less than enthusiastic. He went off to print information and came back with ‘my’ folder. He said ‘your test results from your CT scan are in from yesterday’. I felt sick. I hadn’t thought I’d get the results until after my week away when I’m booked to see the oncologist next. I didn’t want to know before but now faced with them in the brown file, I couldn’t say No.

 

The report was a bit vague.

 

All five pulmonary nodules have increased in size for example 6mm to 11mm.

The para tracheal nodes have all increased n size. WHAT!!!!!! What para tracheal nodes? Apparently they were present on the 2nd Julys scan but they didn’t tell me! All sub 1cm in size. The doc said maybe because they are so small they didn’t bother telling me!? I said I want to know exactly how many and all their sizes.

 

Moving on from that bombshell a new node in the Hilar region is necrotic. Hilar is in the chest region and necrotic means dead. Yes- dead!

 

The doc said they are not sure why it would be dead as I’m not receiving any chemo.

I just walked out thinking so my diet, exercise, positive mind, supplements and maybe the treatment from Germany could already be working?

 

The good news was they say it hasn’t spread to my liver, spleen or kidneys.

 

Of course Pete and I were initially upset. I had hoped for a miracle- that the growth had stopped or even they had fully gone. But as reminded by Pete the German docs said it was too soon for the DC and the NDV to have shown to be working so soon.

 

Well I still feel as well as I did and after being coached by my Bear we put our minds to Marbella.

All packed and off to see friends get married. Can’t wait!

Heart chakra increases experiences of tranquility

Today once again I focused on number three of the ten point plan. I met with two long term friends and their little people for lunch. It’s so life enhancing chatting. People may think discussing cancer all the time can be boring and a constant reminder but it’s actually quite cathartic (also as long as who you are speaking to does not give you that look of pity with a tilted head.)

 

Also it’s great just chatting about holidays, clothes etc.. I love my friends. I feel so full after seeing them.

When I got home I received a package from  detoxyourworld.com. My order of Etherium pink and black had arrived. Now for non believers this will all sound like a load of rubbish but for those with an open mind- here goes…

Dr Kate James recommended Etherium powders to me. I had never heard of them so was keen to try them out.

 

Etherium powders are natural monotomic elements.

 

Etherium Pink — An Experience of the Heart. Affects flow of energy into the heart chakra.

Harmonic Innerprizes Pink is a composite of naturally occurring diamagnetic and paramagnetic elements that can enhance the flow of energy into the heart chakra. Love is the Universal energy that ultimately fuels our physical and etheric bodies. When the heart chakra is opened, an experience of Oneness engulfs us. It allows us to experience deeper contact with all that surrounds us. It helps us to accept and understand our challenges as extensions of a Divine plan.

The opening of the heart chakra increases experiences of tranquility and evolves the spirit to greater understanding of self and greater compassion towards others. Compassion increases the capacity of altruism and selfless service, which in turn brings grace and the fulfillment of our true life’s purpose.

Etherium Black — is a purifier, its energy field has the information that cleanses and makes pure. Physically, it aids the natural processes of the body to rid biologically negative chemicals. Etherically, especially in the homeopathic version, it purifies the emotion of love.

Black consists of diamagnetic and paramagnetic elements that have a detoxifying effect on the body and a purifying effect on the spirit. Black seems to remove anything that is not in harmony with the higher good of the individual, or not in harmony with the energy of the spirit of the individual.

I immediately tried the powders out. It was like being a kid again when you accidentally drop your lolly in the dirt or sand box! I have to admit though,the etherium pink made me feel ‘different’. I’m going to continue with it and hope I feel more centred and more ‘love’.

Nurture the Yin by walking in the New Forest… 90 minutes of walking and I started to moan quite a bit!

This weekend has been great. Apart from having a long weekend as its bank holiday it really has given Pete and I time to catch up with friends, relax and breath in fresh air.

Following on from my meeting with Dr Kate James she sent me lots of information with regards to certain elements of the diet and other factors she takes into account. Of course the alkaline diet plays a huge role but she also takes into account traditional chinese medicine and their role in the foods consumed too. Yin and yang is well known to us all but I had never considered how yin and yang foods can affect us too. Yin food characteristics can be seen as cold and cooling and yang are warm in colour and comforting, for example.  Apparently building the Yin is particularly important when trying to create a balanced and healthy environment. This can be done by foods and by what we do.

What I found to be really interesting was reading how to nurture our Yin; being by the sea and water, enjoying a quiet retreat, taking a quiet walk in nature. I have really been enjoying spending time by the river in Germany and this weekend we went for a long walk in the New Forest which I really loved (Pete might think I didn’t enjoy this much as after 90 minutes of walking I started to moan quite a bit! :)). I think it’s like being a child again. It might also explain why Pete sleeps so well on our boat. The energy is so relaxing.

Its funny (haha not peculiar)how so many things are decided and happen so intuitively. Having not known any of the facts about Yin we both have been having instincts of wanting to be closer to the coast and to the woods and outdoors. Of course the other obvious factor is exercise and fresh air perfect for my lungs and for oxygentating my body which is the key here.

The key to my whole life and the plan moving forward is the ten point plan. That reinforces the need to make it as hard as possible for canser to live inside my body. Let’s hope its working.

 

Sparkly eyes… must be from all the green juices…

I had a great meeting yesterday over skype with a lady called Dr Kate James. She has a very interesting background being that she is a conventional doctor but her daughter and her mother both had cancer. This led her to research other methods as well conventional treatment. Instead of reaching for a prescription pad to issue drugs she advocates a different kind of approach; working on a number of levels with different tools to naturally strengthen and rebalance the body. She specialises in lovingly creating individualised holistic based programmes to support patients with cancer and other health conditions. These combine natural dietary therapy centred around chlorophyll rich/ high life force/ raw foods, in the context of a constitutional Chinese Five Element dietary therapy and Western Nutrition. Other supportive elements include EFT and techniques similar to journeying, abdominal breath work, Qi Gong and Yoga, Eastern Spirituality and philosophy.

Now many people may think ‘what a load of rubbish’. But for me it reinforces what I have already started doing. It was good to know that the diet and supplements I have embarked upon are what she recommends as well as the importance of acupuncture and yoga including deep breathing. She is very caring and works very intuitively. I liked her.

The first thing she said was what sparkly eyes I have!. It’s funny as a few people have said how bright they are at the moment. Also she doesn’t yet know about this website and blog and she said at the end of our meeting that she felt I was a pioneer to other people and could really help others with what I am doing and how I have made decisions using my own intuition too. 🙂

I guess the reason for contacting her was to see what she could offer me in terms of guidance. I do feel I am on the right tracks for diet, especially as I feel really well. I do feel really positive too although I almost stop myself from being happy all the time as I feel I need to remind myself of the terrible thing that is going to happen. That’s so backwards when I put in writing. I don’t really know what’s going to happen to me. No one does. I just know that I am not centred fully and I want to embrace that part of me.

I’m really excited about meeting her in October when I will spend a couple of days with her where she can teach me techniques as well learn about Chinese herbs and have some treatment with her.

Had a great yoga session yesterday with Viktoria too. I felt very giggly but really released. I’ve had a couple of really good days. May it continue…shame about the bank holiday weather. :0

‘Sending you much love and positivity’

Yesterday I went for another acupuncture session. The points that were manipulated were tender this time but I actually quite liked that. The feeling that something is being done, I guess. Michael, the acupuncturist said that my energy/pulse has improved since my first treatment. He did say my stomach and spleen feels a bit stressy and the lung was weak but overall better. He stimulated my energy and calmed my emotions as well as boosting immunity.

I am still astounding every time I log into Facebook how many people are sending me ‘heart’ pictures. It feels with me with happiness and it’s so comforting to know that people care and that I am in their thoughts. I received a card today from a friend from primary school, saying ‘sending you much love and positivity’ and another friend bought me lovely wicker heart decorations and heart wine glasses! So generous and overwhelming but most of all so brilliant to see her (I won’t embarrass you any more Amanda.:)). Infact I have received many cards from friends and clients. One client sent me an e-card with a difference- it is brilliant:) I feel so alive today!

I was forwarded an email from a friend yesterday with a recommendation to contact a doctor who advises and consults on alternative treatment too. I am going to be having a skype appointment with her tomorrow. It will be good to know if I am doing the right things and also to see how else she may be able to assist me. On her website it says she uses many techniques, one of them being Emotional Freedom Technique. This really interests me as I think the hardest thing for me to maintain is positivity( believe it or not). Some days I can become very intravert and worry relentlessy. I do try to eliminate stinkin’ thinkin’ but I get consumed. If I could stop that and just live then I would really be happy. I am happy when I’m busy. Life seems normal. But I can’t be busy all the time. I’ll keep you posted as to how that goes.

I love skype by the way! I had a great chat with my man this morning over skype. It’s so lovely to see him at the office….Bless him. He is becoming a convert to the alkaline diet. I send him to work with freshly squeezed juice, and alkaline water. Big kisses for him.. Mmmwwaahhhhh. XX

 

About the girl

Today I thought I’d focus on one of the ten point plan; Mental Fitness. Mental fitness not only means positive thinking but also being confident in the way you look and your self esteem. I want to give information to any ladies out there that have had mastectomy.

This time of the year generally means holidays and wearing bikinis or swimwear. I’m sure that like me the thought of donning bikini was like a nightmare. I trawled the internet but could only find swimwear that was, let’s say ‘not me’. Finally I came across this great site which is founded by a fellow survivor who has convinced Australian brand, Sea Folly to let her adjust and enhance the swimwear to have pockets sown inside. Also I would never have thought I could have worn the bikinis that I purchased because I thought they revealed too much but based on her sound advice I bought two amazing bikinis and noone would ever know. She also provides ‘beanies’ (soft beanbag type infills) that can be used in the pockets.

I absolutely love my bikinis which are bang on trend and worth every penny. This is the web address; http://www.aboutthegirl.co.uk/

Love days like this…

Just a short post today- I am having the best day. I love our home and I love our garden. I’m so pleased to be home. Been cracking on with weeding and as the sun is shining and its sooo humid we are enjoying time together in the sun.

Today I have posted on facebook asking all my friends and followers of ‘Making triple negative a positve’ and my facebook page plus my business page ‘Live Love Glow’, to send me a picture of them and a heart sharing the love like the one of me below. I am so astounded at how lovely everyone is and the creativity they go to make it different and unique. I’m going to use the images to create a mood board or poster and let it remind me how much love there is to keep me smiling and positive.

Finished the day of with a BBQ (mine is all veggies) lsitening to Cafe del mar tunes and a cheeky glass of champagne curled up with my boy. Couldn’t be more in love and happy….. Love days like this.

Genetic results- Do I have the breast cancer gene?

So results are in. I decided that it had been almost five weeks that as I hadn’t heard from the genetics specialist that I would call to see if they had heard anything with regards to my genetic testing to see if I have the BRca gene. I did eventually speak to Lisa Walker (although she was pretty off with me telling me that I was impatient. I’m not going to dwell on it but at the time I was pretty upset by her comments) The results had been received two days before and she was about to send me a letter (which don’t arrive for 3 weeks- in my experience and from what she told me aside form the fact she had said she would call me immediately once received). Anyhow, she simply said that ‘nothing had been found’. Then went deafly silent. I was totally shocked by this news. I had convinced myself I guess that as I had cancer, my grandmother had breast cancer and both my mum and aunty had melanoma that surely it must be genetic. Nope. She told me this was good news as it means I don;t have the higher risk of ovarian cancer.

This fact I guess is very true. It would save me having to have my ovaries removed plus also is a sigh aof relief for my mum, aunty and sister who had I been told I have the BRca geen would have had to be tested themselves and that may have meant they were at greater risk of cancer and then have to make the awful decision of elective mastecomy and  oophorectomy.

For me I was pretty down as this mean the clinical trial for Parp Inhibitors is now off the table. We had heard great results with this treatment and not only does it kill the cancer but there are little side effects. Also I think becasue I had convinced myself that I must have thegene mutation.

As usual Pete came home and made everything alright again. He reasoned it through with me and actually said that it is a good thing really. It eliminates a lot of worry. I had been beating myself up for not having had a test done sooner and that all of the last two years could have been sorted much quicker if knowing I had the gene I would have had double mastectomy and  oophorectomy. i was kind of blaming the NHS for having helped me sooner and I woud not be where I am today. I would have been clear. BUT.. it wasn’t so. A relief really.
So now to get to grips with knowing there is genetic reason for this cancer. OK I can’t have that trial (which although seems to have good results- it is isn’t 100% successful) but I am now waiting for results back from having my tumour tested to see what mutations that has to see what other trials may help me.

Knowing all of this, I do feel in my gut that I am now unsure I want to have any more chemotherapy. Not unless the docs can give me figures and statistics to the success rates. Let’s face it they don;t know how I got cancer, what causes its continuous growth and they certainly don’t know how to treat it, so do I really want to be  guinea pig made to feel utterly awful, ripping my body apart just to find out it doesn’t work?

I listen to what they have to offer but I think right now I’m going to take my chances. It’s odd how such little news can turn my whole thought process upside down. I’ve gone from feeling devastated today, thinking that I’m never going to get through this to now thinking, this could a blessing in disguise. I’m not genetically programmed to have breast cancer (nor are my family), so let’s crack on deal with what I do know.

Just a note on doctors and professors of medicine- They are amazing minds in general who are very knowledgeable. Let’s face they are scientists. But I so wish they had better communication skills. Some are blunt, sometimes hesitant and assuming how much pressure they are under can let themselves become rude and don’t spare a thought to the person that they are speaking to and what turmoil they are going through. I’m not upset anymore. But it shocks me every time.. Maybe I am impatient but isn’t it expected of me?
I’m booked for a return to Germany next month to continue with that treatment. I have a CT scan at the end of this month to see what has happened inside me.(I promise I won’t pin my hopes it has miraculoulsy gone) and I await to the 10th Sepetember to find out results on the tumour and what happens next with the NHS.

I would still be in the doldrums if it wasn’t for my Bear having such a sense of clarity. He makes everything better. What would I do without him. Struggle 🙂

Auf weidersehen, adieu Europe!

We had a great morning in Brugge. It really is a beautiful cool little place with all the swans an’ that. 🙂 My arm is a little swollen from the vaccination yesterday but nothing to worry about.

I have been really pleased with myself this time we have been away. I have stuck to my diet and I can only feel and see positive effects of being vegan. I don’t experience stomach upsets or headaches. I have more energy and brighter eyes and my skin is much better. As an aside it’s great for weightloss. But that’s the least of my worries. I havent’ taken any pain relief for anything on over a month.  Pete asked if the big changes in my diet make me happy or not? I’ve always wanted to be ‘better’. Plus I’ve always known that deep down I shouldn’t be eating and drinking certain things but never had the will power to change it before. So yes I am happy. I’m not saying that this is for everyone in my position. It has to be what feels right for you and your body at that particular time. For me vegan (with a bit of fish every now and then) is the right decision however that’s not to say at occasions I won’t eat whats offered and certainly will indulge in some little drinks or two. I ‘m betting our friends who are getting married soon are sighing with relief. 🙂

I just wanted to thank everyone that has messaged, emailed, written, sent cards, letters and more. The support that we have been getting is overwhelming. In the beginning we cried but now we just feel stronger and more determined.

On our way back to the Good ol’ Grand Bretagne now so I’ll say so long, fairwell, auf weidersehen, adieu! Returning to my kitty kat who will no doubt give me the cold shoulder for days! ha ha!