Back from Dr Nesselhut……

I cannot believe it has been four days since I slept in my own bed and what a great night it was last night. We got home from Germany in double quick time. I have never been through Heathrow so quickly. No queue for passport control and our baggage was already going around the carousel when we walked in, then our bus came within two minutes and once in the car we were home within an hour of landing! Uh? I’m not complaining. It just made for a really great end to a lovely couple of days.

It’s always a bit odd being in Duderstadt during the days of treatment. The treatment itself only takes a few hours so there is so much time left to do what we please and let’s just say Duderstadt isn’t rammed with things to do and see. We always make the best of it and on this occasion we stayed in a lovely hotel in the centre of town which has only recently opened. I love hotels. I think if I could I would be a hotel and restaurant critic. I’m all about the little things. Well the hotel this time was trendy, funky and rammed full of extra value added bits and bobs. The best by far is their spa. Yes! A spa. Working within the beauty and relalxation therapies industry it isn’t often that I get to actually do some relaxing. Well as the weather was still very wintery we decided we would indulge ourselves. I spent time in the pool, saunas, steam room, the Himalayan salt oasis and even rubbed myself down with ice then had a whole heap of showers. Ones that were like a tropical storm which flashed with lightening and masses of cold then foggy spray! But going back to the Himalayan salt oasis. It wasn’t that hot, only about 30 degrees and behind the salt bricks  were lights that changed the mood in the room. Also known as ‘salt caves’ they are beneficial for curing chronic airway and nasal diseases. The healing properties that these salt caves provide have been effective enough to cure asthmatic patients and even those who suffer from other lung related diseases like pneumonia. In fact whilst in there not only were we drifting away to the chilled music and subtly hues but I did actually feel clearer. How perfect for me considering the canSer in my lungs! (See the picture attached) We finished our few hours of bliss with fruit and herbal teas. A perfect day and I couldn’t wait to do it again the next day after my treatment. Well I like to get my monies worth, plus it was minus 7 outside. Brrrr.

My vaccination was given to me by Dr Nesselhut senior and he was as lovely as usual. I love his little stories. Well actually they can go on a bit and as we were stretched for time it was one of those times when I wished he would give me the injection! I like to get as much info from him as possible and I am always amazed at his stories. This time he told us that he had treated a boy from Portugal who went into remission and far as they are concerned cured him of canSer. Firstly I’d like to add that immunotherapy in Portugal can be paid for by their health insurance! Wow this is so cool. How forward thinking. Anyway Dr Nesselhut was in London doing a speech as requested by Prof Dalgliesh and there was a Portuguese film crew there. They asked to film him in an interview because it turns out the little boy’s parents are well known Portuguese actors. He has done a whole interview about the treatment he provided and how in that particular case how he treated the boy. Dr Nesselhut really is amazing.

 

I am on day 14 of the Deepak Chopra meditation challenge and today the intention is to take steps each day toward perfect health. Well I think we would all agree that is really all I do! Ok I have days when I am bit naughty (if that’s what you want to call it) when I have cake and coffee. OK Germany is a bit of tease. It seems Sundays are huge on this tradition. One that I think we should adopt here!

I talk about sleep a lot. This is because as anyone would know, when you are under many changes and stress, sleep is the first thing to suffer and it has such a huge impact on how one feels. Staying in the Zum Lowen hotel this weekend had the best duvets, mattresses, and pillows –ok that makes a bed! But you know what I mean. It was nearly as good as the Heavenly bed I stayed in Berlin years ago. Seriously a Heavenly bed. Out of this world.  So in total I have had four great nights sleep of over ten hours a night. I thought as you got older one slept less. Well I must be regressing because I feel like a teenager who could sleep all day! This is not me complaining. I love it. My day goes better, I think better, I feel happier and I am sure my health is better for all the sleep and regeneration I get.

I have to admit my thoughts have been really buoyant for so long. I don’t have a terrible need to know what is going to happen anymore and I feel more relaxed that things may be ok. Well let’s correct that, I have a strong feeling that things will be ok. I don’t want to jinx it but that’s how I feel and it means I enjoy life more.

I have been getting ever more messages of support from friends and people how have found me on here and I am still getting more donations slowing coming in online. I am astounded. I am up to £4900 including gift aid so far! Whoop!

My friends have set a date for the Ladies Night Garden Party featuring raffle, products and services sold on the night. I reckon it will be a blast and they will make loads of money. It all helps go a long way!

I’ve yet again made more bracelets today and have a link going live on my website so that people can buy them online too. Take a look on the home page.

Pete has been getting Google alerts with news and research for triple negative. One day I will spend some time trying to sift through thrm all. It does seem not only with triple negative but other canSers too, that are getting ever closer to actual successes for individuals. I’m going to be success. I simply cannot imagine it being any other way. Not anymore. I feel so different to how I did even four months ago. Pete and I were discussing over the weekend that we feel canSer has actually had such a positive impact on our life. Who would have thought that? And how many other people feel that way? I really truly believe it has been the best thing to shake me up and wake me out of my ‘coma’ of what my life was before. Everything makes sense and I don’t feel like I am tumbling anymore. No one teaches you what life should be like because you are meant to find out for yourself and actually every stage of life we go through is ever changing. So who can teach you this? But the more I learn, read, listen and watch I realise life is so simple. And that is so funny as one of my mantras is ‘Keep life simple’.

tt1

Morning minutes are magic minutes…

Today has been an odd day. Mainly due to me having lie in. The start of a day really has a major impact on how it will pan out. I now realise why Pete says, ‘morning minutes are magic minutes’. He insists on being out of the house before 7.10am. Any time after that then the traffic is awful and a chain of bad luck events happen. This inevitably puts him under pressure for the rest of the day. In fact that’s why he goes to work so very early. Bless him though he brings me a hot drink, cuddles me till my eyes pop out then wraps me back up, closes the shutters, turns of the TV and locks the front door on the way out. I love him. He only wants the nicest things for me. But that is exactly what happened this morning. He would usually get some sort of garbled conversation out of me whilst I pretend to be listening with my eyes stuck fast. I stayed there until just gone 8am! That’s a lie in for me. I am guessing Saturday night caught up with me plus I did a good hour worth of exercise yesterday. Today my muscles ache. I think it’s from yoga more than cardio exercise. My shoulders are really aching! It just goes to show how yoga really does work the body.

 I’m really enjoying the Tara Styles yoga DVD’s at the moment. I am getting stronger. I can now actually lower myself down without collapsing. This is great as my chest muscles have been weakened since I had the mastectomy. As well as that I find it very hard to raise my right arm fully above my head as my scar goes all the way under my arm almost to my back. The knack with yoga though is working alongside your breathing. This for me is still a challenge as I find me holding my breath as I contort myself into various positions.

 Once upon a time not so long ago getting up late would have had me in a flap. I didn’t feel particularly refreshed either which I find hugely disappointing. But once up my morning flowed quite nicely.  I finished the 21 day meditation challenge with Deepak Chopra, which actually ended up being a 22 day challenge! Well actually it took me about 28 days as I kept having days off whilst away from home, but I got there in the end. I would highly recommend any of his 21 day challenges. His lesson at the beginning really gives you something to think and focus on and makes so much sense. 

 I didn’t have much planned today and have felt a bit lost…It’s crazy that we long to have less to do yet when in that position feel you should be doing more. I know there are plenty of jobs round the house and garden to be getting on with but I am flatly refusing to do garden jobs when it isn’t very pleasant outside. The leaves will still be there in weeks to come and let’s face it no one really notices do they? It’s only for me and Pete to feel better. It’s about pride of where we reside.

  I have been shopping for the list of ingredients for the meals I planned for the week. I never thought I would see the day that my shopping trolley would be filled with mainly veg and fruit and all things healthy. It’s totally refreshing and I feel good about myself as I approach the check out. It’s funny because it is hard not to look at what other people are buying. They have their crisps, dips, chips and other processed foods. Then they give me a side wards glance and check me out once they have seen the conveyor belt full of fresh foods. I hope they think I reflect my healthy choices! Although at the moment I look a right spotty mess. It must be all the sugar and alcohol or maybe it is me touching my face too much. One tip for everyone; avoid touching your face with your hands as they are naturally oily therefore transferring dirt and oil from your hands to your face clogging up the pores. Hey presto a whole loads of spots! Just what you don’t want.

 After doing my household chores… (Honestly it’s never ending and there are only two of us in this house!) I felt like a loose end. Sure enough the rest of the week is busy for me with clients and reflexology and friends coming to visit but today I feel like I should be doing more to help me and my cause out.

 I have been continuing selling the bracelets although this has had a slump in recent weeks and then I wonder what I should do next. Should I be doing more drawing, if so I want to have a plan, ideas of a theme to work on? Should I be working on more self development and things to improve my health and the outcome I want to achieve or should I be going to train as an HD brows trainer?
I want to do all of the above but I am not sure when……My health is good and as long as I am taking chemo, having immunotherapy and focussing on my rituals every day then I think I am doing the right thing. I don’t feel there is any avenue I haven’t explored and I don’t feel that I need to go for any more therapies where I need to research my sole and let go of old stuff that clogs up my mind. I think that right now I am in a good place. I feel balanced in my mind and heart. To be honest I really could do with some bright daylight and start getting out in the open. I feel I am lacking fresh air and vitamin d… Ok I am taking enough vitamin d3 but you can’t beat the really thing and I like pottering in the garden and I honestly think that maybe right now doing more training and taking on too much work could interfere with having a good summer! I know naughty eh? Lazy, cheeky or sensible? I think the latter. I am feeling well therefore I want to make the most of it and as long as the Earth catches up and we get a summer then I think I should really enjoy it!

  Living for the day really makes you forget everything you would usually feel guilty about.  I have already dumped the negative feelings that I had because of drinking too much alcohol and eating too many cakes last weekend. I don’t think about running around like a headless chicken anymore as I know everything will get in due course if it is meant to happen. I want to update my mood board but I don’t think I will do that now until it feels right. And when I do change the mood board I know I will feel really good about it but now is not the right time. Now I come to think of it there is so much I could be doing to enhance my life. I want to learn how to cook more….. That takes some organising for me as it doesn’t come naturally. Ok on my mental list of things to do…

 Here is today’s research:

 Chloroquine anti-malaria drug kills autophagy-addicted breast cancers

  The process of autophagy cleans cells – they wrap up the bad stuff and then dispose of it. And so it stands to reason that inhibiting autophagy would make cancer cells less able to cleanse themselves of chemotherapy and so more susceptible to the drugs. That’s what the traditional anti-malaria drug, chloroquine, does – it inhibits autophagy. Existing clinical trials are testing chloroquine/chemotherapy combinations against breast cancer.

 Research presented at the AACR Annual Meeting 2013 shows that some breast cancer subtypes depend on autophagy more than others – and that inhibiting autophagy in breast cancers that depend on it may be enough alone to kill the disease.

 “When you inhibit autophagy either with chloroquine or with genetic switches, you see that some breast cancer cells don’t care. Some are only moderately distressed. And still others just die straight away,” says Andrew Thorburn, PhD, deputy director of the University of Colorado Cancer Centre and senior author on the study with first author Paola Maycotte, PhD.

 “Ultimately what we’d like to do is use this as the basis for a test to identify tumours in which autophagy inhibition is most effective. You find out what a cancer needs and you take it away – this is the model of modern, targeted therapies,” Thorburn says.

 With or without additional chemotherapy, identifying breast cancer and other cancer subtypes that are especially addicted to autophagy and so especially sensitive to its inhibition could allow an old drug to be used in a new, powerful way. For example, this study identified two likely sensitive breast cancer subtypes – basal-like and claudin-low – both of which are highly represented in aggressive, triple-negative breast cancers. The survival of triple-negative cells depends in part on the activation of the STAT3 gene, which is regulated by autophagy. It’s likely that inhibiting autophagy in these cells blocks STAT3 activation, which in turn results in the death of triple-negative breast cancer cells.

 “There’s more lab work to be done,” Thorburn says. “For example, we’re just finishing up work with autophagy inhibition in primary xenografts – taking the work from cells to mouse models. And other work presented at the conference by graduate student Rebecca Barnard is exploring when in the cell cycle is the best time to inhibit autophagy. But this is an especially exciting line of reasoning. What Paola’s data suggest is that for some breast cancers, just inhibiting autophagy may be enough to successfully treat the disease.”

 Source: University of Colorado Denver

 

Omega-3 fatty acids more effective at inhibiting growth of triple-negative breast cancer

  WASHINGTON, DC (April 9, 2013)—Researchers from Fox Chase Cancer Centre have found that omega-3 fatty acids and their metabolite products slow or stop the proliferation, or growth in the number of cells, of triple-negative breast cancer cells more effectively than cells from luminal types of the disease. The omega-3s worked against all types of cancerous cells, but the effect was observed to be stronger in triple-negative cell lines, reducing proliferation by as much as 90 percent. The findings will be presented at the AACR Annual Meeting 2013 on Tuesday, April 9.

  Omega-3 fatty acids are found in oily fish like sardines and salmon, and also in oils derived from plants like hemp and flax. Previous studies suggest these compounds can negatively affect critical mechanisms in cancer cells, namely those responsible for proliferation and for apoptosis or programmed cell death. Lead author on the study Thomas J. Pogash, a scientific technician in the Fox Chase Cancer Center lab of Jose Russo, MD, says the new work underscores the important role common compounds found in food may play in keeping cancer at bay.

 “Diet can play a critical role in breast cancer prevention,” says Pogash. “When you compare a western diet to a Mediterranean diet, which has more omega-3s, you see less cancer in the Mediterranean diet. They eat much more fish.”

  Breast cancer is a heterogeneous group of cancers comprising diseases that differ on the molecular level. Patients with different types of breast cancer respond differently to treatments. Four distinct categories of the disease are generally recognized. Two of those, luminal A and luminal B, grow in the luminal cells that line milk ducts in the breast and have receptors for estrogens and progesterone (prognosis is generally better for patients with luminal A than with luminal B). A third category includes tumours that test positive for the HER2 receptor.

 Russo notes that no targeted therapies are currently available for patients diagnosed with triple-negative breast cancer. Combination chemotherapies are the standard of care for early-stage disease.

  When a cancer cell digests omega-3s, the fatty acid is broken down into smaller molecules called metabolites. Russo, Pogash, and their colleagues tested the effect of large omega-3 parent molecules, as well as their smaller metabolic derivatives, on three luminal cell lines and seven lines that included basal-type triple-negative cells.

  Omega-3 and its metabolites were observed to inhibit proliferation in all cell lines, but the effect was dramatically more pronounced in the triple-negative cell lines. In addition, the metabolites of omega-3 reduced the motility, or ability to move, by 20-60 percent in the triple-negative basal cell lines.

  This study is part of a consortium between Fox Chase Cancer Centre and Pennsylvania State University under a five-year grant awarded by the Komen Foundation. Russo is the principal investigator of the project at Fox Chase. Andrea Manni, MD, leader of the Pennsylvania State University team, has extended this work to animal models, studying the anticancer effects of omega-3s and its metabolites on mouse models of triple-negative breast cancer.

  Russo and his colleagues are working on two related projects, one on the role of epigenetic events in the mechanism of cell transformation and another on the potential action of peptides of the hormone human chorionic gonadotropin (hCG) on breast cancer prevention.

That’s amazing…All the more reason to eat fish and flaxseed then I guess and if you really do not want to eat it then get a vegetarian supplement!

Tomorrow I have an afternoon of clients again. It hasn’t taken long for the word to spread and I have been getting messages all day from people wanting to book…. Exciting!

Light and Love. X

New research could be a two pronged attack

Through our research and alerts, which are coming in thick and fast, Pete has been reading about the possibility of a drug that can break down the protein on the surface of canSer cells specifically for triple negative breast canSer. On thinking this through Pete said if they combined that with cell therapy it is logical that it could kill the canSer dead. The drug would kill the protein that protects the canSer making it sensitive to attack. The DC cells could then get in there and kill the canSer….

With this in mind we simply had to ask Dr Nesselhut about it. Unsurprisingly he knew the drug and explained that it is of a huge cost but combining it with DC therapy it could be an option. There are studies already being done into this. This makes so much sense to us. Combining procedures rather than looking for a one pronged solution; this is a two pronged attack.

We also received a link of research regarding a vaccine in Australia. It seems we could be on the right track.

http://www.keyetv.com/news/features/top-stories/stories/breast-cancer-vaccine-gives-austin-woman-hope-13812.shtml

Every new lead gives hope.

I was reading a letter by another canSer survivor in my therapist magazine. As a therapist with canSer she too has taken it head on and has her own blog called mommyoneboob.

I decided to contact her and share some news and basically say ‘HI’. She replied immediately and we exchanged advice and tips. Its comforting knowing there are many other warriors out there. In fact I think there are more and more warriors out there all the time. It seems every where I turn canSer survivors are getting savvy and making positive changes. I would almost say that the general public are becoming more conscious too, but not enough. CanSer is still spreading like a bad smell and it seems we all know many people with canSer now.

I will keep looking and informing as many people as possible of my findings and in the mean time I am trying to live without thinking about canSer too much. I actually want to try to forget about the disease so that I can live a full and happy life.

I’m over half way on this round of chemo. This is my 16 cycle now and I now don;t feel any major need to stop taking it. Of course I would rather my body didn’t have to have it but it doesn’t make me ill and I embrace the healing properties it is doing to my body by attacking the canSer.

The countdown to my next CT scan is starting. Three weeks……

The weekend is inbound and I am looking forward to catching up on life and preparing for work on Monday…

A night of antihistamines and imodium :(

So the Easter break has passed and we are all back to our routines and reality. I actually like having a routine and as much as I never want to be alone and for Pete to go back to work it does mean I can get lots done and focus on my rituals. It was good to get back to meditating, yoga and exercise. Yesterday was a good day and it was lovely to have the sun shining yet again despite the frosty temperatures.

I had my clinic appointment in the morning and it was very efficient and as usual was met with Prof Harris. My appointment was at 12 and I was seen at 12! Wow! That has never happened before. Prof Harris asked me questions about how I was feeling and other than feeling tired some mornings whilst on chemo there was nothing to report. He decided to examine my chest by listening through his stethoscope. I asked how it sounded and he said, ‘Clear as a whistle’. Great stuff. He asked if I had my ct scan yet. No. I haven’t even had a letter with an appointment date. He seems very keen for me to have this but it has only been 7 weeks so far since my last one. I had envisaged it being sometime late in May. But I guess if it comes sooner, then it does.. That’s all there is to it. I am not prepared for it to be sooner. I feel like I need to revise, swot up and put more hours of extra effort in. In what? In visualising and being ‘better’. If I had more time maybe I could have a few weeks of being really good and working every day to blast the little buggers from my body. I am still finding it hard to get my head round that all along I wanted not to worry so much and to have a normal life not worrying and now I am worrying because I’m not worrying! I simply cannot win! I won’t allow myself to be ok with this. I just don’t want to be caught out and crushed if the news isn’t what I want it to be. It’s a lot to go through every couple of months. It ruins the flow of life. I should correct that. I ruin the flow of life as it is me that’s worrying about it.

Anyway moving on with the day I was really looking forward to my tea as Pete was making us Tuna nicoise salad. I love Pete’s food and cooking. The problem is the dish is never the same twice. He is very creative and you never know what flavours you may get. Last night was one of those. We both seemed a bit bemused with the taste of the salad as it was a bit bitter. I felt some tingling in my mouth and I thought it had chilli or pepper coming through. Straight after tea Pete said his eye was itching and it looked really swollen and the fleshy part on the inner corner of the eye had started to protrude. I thought it odd but nothing much else until I started to get a banging head ache. I thought it was really odd as I haven’t had a headache since last July. Then I began to feel really hot and a sense of blood rushing round my ears and shoulders. I looked at Pete and he looked the same too. This is where we began to Google our symptoms (as you do) and found we were having an allergic reaction to something we had eaten. The only things we could think of were coriander and mustard seeds. Apparently when combined with raw vegetables they can react to cause something called and Oral Allergy Syndrome. How weird for us both to get it though? Neither of us are allergic to anything. Our hearts were racing; our bodies hot and itchy and then we got the stomach upset. Then there were hours of diarrhoea. Wow what an exciting night! Eventually after taking antihistamines and Imodium we went to bed where we slept like logs, probably from our bodies trying to repair themselves. I felt terrible this morning. I couldn’t drag myself out of bed. I did eventually manage to do my morning exercise and felt ok.

I had my monthly acupuncture session today which I had been looking forward to for the whole month but I felt so tired that I could barely keep my eyes open to get there and back. In fact I actually had a nap on the treatment couch. I can’t remember feeling so tired. So tired in fact that today has been a spent trying to wake and feeling less than motivated. What I need is a great big sleep! I intend on having this tonight and then I have a lovely afternoon with clients. Yay!

Acupuncture was good (what I can remember of it) and many points felt very sensitive. Michael worked more on boosting my energy and balancing me. He did ask if I was having night sweats and hot flashes. This is worrying as he must tell something from my pulse. He is very good like that. He treats many ladies for fertility and can tell when they are about to have their monthly cycle. If he is asking me about that whilst feeling my pulse my guess is he knows something I do not. I am not going to let this bother me. It does fill me with sadness not having children of our own and in my head I still believe that I will one day stop chemo and be able to have our own. But as it stands I am not stopping chemo as it seems to be working.

I had to wait for my blood results from the hospital before I started chemo this morning. They came back fine as usual and there I go starting day one of chemo again. Fingers crossed that everything carries on as normal.

So tonight’s’ menu is something safe. I don’t want Pete and me to look all scary again tonight! Ha ha!

See, I really am shallow!

As predicted I slept like a log from 8pm last night till 7am this morning and even then I didn’t drag myself out of bed for another hour. Such deep sleep…. amazing. I must have needed it after my allergic ordeal the night before.

Pete sent me a message yesterday that he read on a forum from a lady that posted on there in 2009. It states that Xeloda (Capecitabine) is such a good drug and despite the side effects of sore and peeling hands and feet (of which I am not getting any symptoms) it’s worth it. This is a snippet of her post;

‘Love shoes! I went shopping and bought 4 pairs of lovely summer shoes and haven’t been able to wear them as yet, still trying to get the Xeloda dose right for me to prevent the peeling feet and hands and feet from the Xeloda. This is a very effective drug, so hang in there. There are many new drugs in the pipeline for TNBC, women in America are very willing to share their TNBC journey, look at www.breastcancer.org  it’s a huge site with latest research accessible from the home page. They have a forum devoted to TNBC which I visited when I misunderstood my tumour status.

Oncologists may indicate a 5 year survival period, but remember this is an OUTDATED average of all women, and is regardless of their other existing conditions, willingness to fight and ability to, or willingness to, undertake new treatments coming on line all the time.

Advanced breast cancer should be looked on as a chronic disease that can be continually treated, so start looking forward to, and planning to enjoy the future. More grandchildren? Weddings? Family get togethers?’

I love this post. It made Pete smile and gives us hope. The information that someone in my position can only expect five years at the most is so outdated. They said that five years ago and surely things have moved along since then? I totally agree with her when she says; Have you looked on the bottom of your feet for the stamped ‘Expiry Date”!

No one can tell us how long we have left and I certainly don’t look like I am going to die anytime soon and God willing I will win this battle and be here to spread the news of my winning formula.

Pete, as ever, is still researching anything which is triple negative related, and sent me a link today on how researchers say one specific microrna promotes tumour growth and cancer spread. Researchers at Moffitt Cancer Centre have determined that the over expression of microRNA-155 (miR-155), a short, single strand of ribonucleic acid (which is a family of large biological molecules that perform multiple vital roles in the coding, decoding, regulation, and expression of genes) encoded by the miR-155 host gene, promotes the growth of blood vessels in tumours, tumour inflammation, and metastasis. As a therapeutic target, miR-155 could potentially provide a new avenue of treatment when targeted with drugs to suppress its activity. It also plays a critical role in metastasis, especially in triple-negative breast cancer. This makes miR-155 both a prognostic marker and a potential therapeutic drug target.”

So, as suggested by Pete I have forwarded it to Prof Dalgliesh and Dr Nesselhut. Maybe it will help?!

My new friend (from reading this blog) sent me a lovely email last night as she felt I seemed a little vulnerable this week. She said that she had discussed about ‘being present in the moment’ and not trying to fight stuff all the time and always trying to see into the future and what might/ might not happen to me. She said it is very natural to feel scared and worried at times with what I have been through, and that actually I should spend time allowing my body to feel this way. (This doesn’t mean wallow in it either) I should lie down quietly and let my body and mind freely experience feeling upset/scared/worried/guilty etc and just accept it is a natural feeling and allow it to flow through you. This is the most important bit – ‘letting life’s force flow through you’ – the worst thing for ill health is letting these emotions get stuck in you and hidden away somewhere where they can fester.

 Once you have given them time to be acknowledged, you can then let go of these feelings and ask them to leave your body as you don’t need them anymore. This is when you can then think of something positive – it doesn’t have to be anything huge – just something that makes you smile, don’t try and force it for ages and ages, just end on something positive and nice, so this is the last emotion flowing through your body whilst lying there.’

 

This is such good advice. I know I have been taught this too yet it is still so helpful to be reminded of it from time to time. It’s hard being perfect all the time! And on the outside and most of the inside, I do feel upbeat and happy and grateful, eternally grateful, for how good I feel and for how lucky I am to have this knowledge of life and what there is to offer. I like the fact that I’m allowed to be scared and tired and to allow myself to accept my lazy days. Thank you… for thinking of me Hannah. X

 

On with today, it’s snowing….. I have to admit this weather is really getting to me now. I have been saying all along, ‘It could be worse’. But I am actually longing for some sun on my skin and to look healthy with a sun kissed glow and to feel warm. I am with Davina McCall whom I follow on twitter. She says she’s not impressed by snow in April. Me either. I thinking about our trips that we want to book away but all I want is to bask by a pool and get a tan! How sad is that. With all that the world and life has to offer and all I want to do is read a book and smell of coconut oil! Ha ha! See, I really am shallow. J

Immune system is best cancer fighter, ‘milestone’ reaserch confirms

Friday night was expected.. a battle to watch Comic relief and trying to stay awake. I managed to stay awake until 10pm and must have cried at every heart wrenching vt they showed. I have to admit there are times when I just think to myself.. what sort of world do we live in? It’s so cruel in so many ways. It’s hard to understand what it’s all about?! And there is where that thought has to stop because if we really start going there then the whole will to live just drops off the face of the earth.

 

Saturday was a brilliant day. I did some ‘therapy’ and got all creative practising a wedding make up on my best friend. (It went very well, even if I do say so myself) Pete became the usual excited host and presented us with cocktails and champagne. So much for not drinking but I always feel that it’s rude to decline and actually it goes back to the ten point plan.. A little of what you want is good for you. (I keep telling myself this at weekends!) Let’s face it, I have reduced my alcohol intake massively compared to what I used to drink and it goes in fits and starts as to the amount I do drink. Pete and I did feel decidedly drunk and watching England play Wales at rugby didn’t help.. Boo. (England step up!)That said the day after the night before we are increasingly starting the day by saying we don’t need alcohol any more. It doesn’t have the same effect it did years ago. Maybe we have got old? Or maybe we have just found there are other ways to feel really good. Either way, it’s progress.

Anyway, back to going to bed early. I had the best night sleep on Friday night. I slept about 10 hours and having had no alcohol. I am convinced that this helps my slumber. I felt amazing on Saturday morning and before Liz arrived for some female (and Bear) bonding I did all my rituals and got stuck into my new DVD of yoga. I have mentioned her, Tara Styles, before but as there are 4 DVDs in the package I am having a new experience every time.  I am still finding it hard to think of yoga as exercise, but if all the yogis and yoga enthusiasts are anything to go by then yoga is definitely enough exercise.

Pete made me a brilliant smoothie for me that morning. I am finding that juicing is turning my stomach at the moment. I don’t think it is the veggies that I use I think it is more the supplements powders that turn me more green than normal. Pete’s smoothie consisted of avocado, spinach, apple, dates, ginger and nut milk with flaxseed in it. I added all my powders too. It was very tasty! Having a smoothie is great alternative to a juice. I don’t usually have fruits and I did find it a tad sweet but in the nature of having some fruits with their peel/kinds on I know that the sugars get broken down differently to when they are purely just the fruit. This is what the dietician told me.

Sunday we awoke to a blizzard. A snow blizzard. The weather is freaky again and so we decided to do some retail therapy. Well I didn’t expect anything but it was a perk of the trip to be taken to my old friend Karen Millen.  Big smiles!

The weekend was full of lots of cuddles from my Bear and we spent yesterday afternoon just snuffled together watching Harry Potter and eating a great creation that Pete made from spinach, tomatoes, cod, and more.. mmmmmm. Seriously I am cat! Give me warmth, cuddles, a soft place to sleep and food and I am totally made up!

My sleep wasn’t great last night and I am finding I am waking up with aching ribs and back still. In fact I got myself into a tizzy last night before sleep as my whole side was hurting. The one thing with canSer is that the every new thing or ache makes you think the worst. It’s going to be hard to ever change that especially as time is of the essence. I know for sure that if you do not speak up even if you think you are being neurotic that canSer can creep up on you and catch you off guard. Now there is a fine line between being real and being totally mad. I am pleased to say that this morning my back did ache a bit but my ribs didn’t.

Maybe I was worrying last night as I had been emailing the lady I mentioned on Friday, Helen who is also writing a blog and raising money for charity since her sister in law has canSer. Another hero in my book. Helen emailed me and gave me more info as to why she has embarked on the charity drive.  Her sister in law was 29 years old when she started her roller coaster. She is now 33 and ‘it’ is in her bones, spine, stomach, and lungs. God it makes me sick. I don’t want anyone else to be going through this. I know that her sister in law, also a Clare, is in pain. It’s so hard having any condition, disease, or illness. For anyone thinking about ill health the worst is feeling in pain. I can’t imagine what it must feel like physically or mentally. Or rather I don’t want to imagine that. The thought of things is much worse than actually experiencing them… well in most cases. I am getting to know Helen and as she is going to be organising a charity ball in Oxford I am defo on her side and will be getting bodies there and hopefully getting raffle prizes and doing anything I can. Working together only seems natural. And she is a local girl. All I think right now is what can we do for Clare, Helens sister in law? I need to know what treatment she is having and maybe I can point her in the right direction. Start with alleviating symptoms, helping her spirit and then let’s get cracking at getting her some special treatment. It then led me to read in ‘What the Doctors don’t tell you’ and article titled, ‘Immune system is best cancer fighter, ‘milestone’ research confirms’. It states a healthy immune system is the best way to beat cancer. In fact the ‘war on cancer’ will never be won if we solely rely on chemotherapy, say researchers in a new report hailed as ‘ a milestone of cancer research’.

A research team from the Eberhard Karls University in Tubingen, Germany, has demonstrated and proved that the immune system has the capability to drive tumours and cancerous cells into a state of permanent dormancy. This means that immunotherapy is an effective  cancer therapy and it does so without destroying cells, say the researchers, led by Prof Dr med Martin Rocken. Instead it causes senescence, or lifelong dormancy, in cancer cells and stops the cancer spreading.

OK so what jumps out of that article.. Germany.. again! Well that only makes feel more confident in what we are doing. With another round (round 3) of immunotherapy coming up I just hope this little trickster of a canSer stops too!

After I got all my chores done today I have sat for a few hours making more bracelets as requested by the ‘bracelets elves’. Another 100 red heart bracelets have been made and already packed to go their sellers. I never expected for them to be so popular and I am still having people email saying they have friends in other parts of the country willing to circulate them for me too. I have also been asked by the Cancer Vaccine Institute if they can sell them in their shop.. Ok so maybe I need to get some more printing of the cards done and get my tushy on the floor to make a proper load more! Whoda thunk it eh? My little bracelets… Makes me feel all warm and fuzzy inside.

This week ahead is exciting. I’m working tomorrow and then off to my mum’s for some proper girly time together. I didn’t get to see her on Mother’s Day so it is only right I visit her and let her look after me! Haha!

The problem with Triple Negative Breast Cancer is the name is so negative!

We have been waiting for todays appointment for ages!

Today we left early to get though the piles of traffic into the city of London to see Professor Tutt. We had heard of him through the internet and Professor Harris as being the leading oncologist with an interest in triple negative breast cancer. As mentioned before he is heading up research that focuses solely on this strain of disease.

He is a lovely man and very thorough. He discussed my history and every detail into what I have had and am having in the way of treatment. We discussed the immunotherapy with him too. He did an examination and said I am in perfect health and wouldn’t know that I have canSer. I know it sucks right! He was very honest with information he gave us and very frank with what can be done. The overall feeling was a good one. He did say there is a very negative spin on triple negative breast cancer probably from the name but it doesn’t always have to be recurrent and doesn’t always end in metastasising. In fact there is good treatment that knocks it out sometimes better than standard breast cancer.

He said looking at what I have been treated with, infact he called it using the ‘retrospectoscope’ he thinks the treatment I have had is all great. Every chemo I have been given was the right choice. In terms of what to do now. He says, ‘If it aint broke don’t fix it.’ So carry on as I am. I was always going to do that! As usual he wasn’t offay with immunotherapy but did keep asking me if I get any side effects from the injections. He seemed to think that the vaccines could cause many changes and create more canSer. But I haven’t had any side effects and I have felt just dandy! I am pleased we have touched base with him and he has said that if there is anything else I may need or want direction with he could help.

He did give me some insight to what he knows about triple negative. He says there are some similarities between triple neg and ovarian canSer and in how melanoma functions is simlar to triple neg. This all seems very interesting but I so want to hear they are close to a cure. Surely they must be close to a cure!

As usual the conversation always comes up as to how the disease is being dealt with at the mo but in the future if the disease should not be contained by capecitibine there are many other routes I can go down in terms of standard treatment. Pete asked outright if any of his patients have been cured from having standard treatments. He said, ‘yes’ there have been the odd few that the canSer hasn’t returned. That’s good enough for me.. But it does always fill me with dread. I am starting to dislike hearing, ‘better quality of life for as long as possible’.

He said that triple negative needs a positive spin on it to make it seem less negative. He says we need to focus on the positives. I told him that the name of my facebook page is ‘Making triple negative a positive’. He gave me a thumbs up! He seemed genuinely delighted that we are raising money for his research.

He said that Professor Harris, my oncologist is a big deal in canSer research and that Professor Middleton is really great for trials in the Oxford hospital. He said that there are still many routes to go down should the canSer start to grow again and also that he knows of people that have been on capecitabine for about 20 cycles, that’s nearly two years. I guess there is still hope then. But there is always hope. As hope is all we have.

I have just got back and been getting lots of bracelets packaged up and posted up. I still have a few hundred left but they have been allocated to friends and volunteers. I am so impatient.. we have already reaised £1385 to date and I am really chuffed with that but I want to get more! I know There is no rush but seeing that total totting up is such an incentive. I want more! I sound like Oliver Twist..

Overall I feel that today was success. Prof Tutt said he would happily help me in the future with anything needed such as getting on trials I need to as well as seeking out certain treatment. What a nice man!