Living a balanced life….

The end of April is upon us and we have a long weekend to look forward here in the UK. The forecast isn’t fantastic so I cannot imagine many people will be able to enjoy lazy walks in the Spring sunshine. Last night most of the UK had snow. Luckily for us it didn’t settle. It’s all a bit odd but I am happy to receive this kind of weather. It’s better than earthquakes and tornadoes.

Pete and I have a weekend of walking planned again but this time in Dorset. We get to see my Ma and spend some time with her down by the coast. We love it there and Pete and I haven’t been for ages so it’s going to be really good fun.

Today I feel tired. I guess like many of us Thursday is close to the weekend and naturally one starts to wind down. I think my tiredness is from exercise. I don’t think my body can handle it! I will have to continue exercising every day to see changes and improvements.

 

As planned, last weekend Bear and I got out in the wilderness and walked. It may not sound very exciting but we live in such a beautiful area that we never even knew about. Saturday we came across a woodland with a blanket of bluebells that looked like the sea and Sunday we walked the ridge of the ‘Devils Punchbowl’ (sounds so exotic and exciting!). It was hard for me as I find hill walking really tough but Pete thinks I am improving. I do not. I feel frustrated on how slow and out of breath I get.

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We meet such lovely people on our way and this guy on a horse slowly walking down the round spotted Pete and I having a well-earned cup of tea by our car, Randy the Landy, as I call him. Having a Landrover really does attract many people. It’s a bloke thing I think! It was so great chatting to a complete stranger who we will most likely never see again but what a nice fella. We meet all sorts on our little days out. Even just standing in our own drive way people seem compelled to talk to us. (That could be because they think we are mad painting dragons!)

 Bear and I even went to the gym on Sunday! I know we were really going for it….. I knew about it on Monday though. All week exercise has been my focus and I have really been mixing it up. Doing HIIT, weights, resistance and yoga. My cough doesn’t hinder me nor did my ribs. That was until yesterday. No idea what has happened but the pain in my ribs has returned but much lower down nearer my waist. It’s a stabbing pain and coughing is so painful! It’s so weird because only the day before I thought to myself I have been really lucky recently with ribs not causing discomfort especially since my cough has not abated but actually probably changed a bit, maybe a bit worse but different to before. I am almost cross at myself for having that thought as now it is bad again. I try to look at the positive and think maybe the pain is worse to stop me from coughing as much, because it sure is making me think before I cough.

Other than that I appear to be really healthy or ‘fit’ as the guy on the horse called me. He couldn’t believe I had canSer and thought I was fit as a fiddle. On the outside I am happy I do look really healthy. I am a healthy weight. I think my mind is generally quite healthy. I am still practising mindfulness almost every day and I find a really comfort in closing my eyes and meditating even if my mind gallops around. My diet is mostly healthy. Of course I have the odd indulgence. But I barely drink alcohol and I certainly don’t battle with the demons inside that used to make think I should be completely abstaining from such things. I have a nice balance. I do still feel a bit tired and low at the end of the day but that is probably my body telling me to slow down. I listen to my body and what it needs all the time. If I don’t feel like doing things I don’t. It does mean some jobs on my to -do list may take longer than I would like but when the time is right the job gets done properly. (Lacquering the decking is one of those jobs. I could’ve done it this week as it’s been bright and dry some days but it hasn’t felt warm and for me I would rather wait until we have some warmer weather)

I have been taking my supplements and feel confident in what I am taking to assist me. I am probably missing certain things as nobody is perfect but I feel an all-round sense of I am doing the right things and my life has balance. Pete is a big part of that. Despite struggles in daily life he comes home and no matter whether I am happy or a little big grumbly he gives me smiles, cuddles and love. We have a little routine to plan for the next day then we prepare dinner together. Like I said our meals have been really healthy recently. We have what feels right. Plenty of fresh protein mainly from fish, greens in the form of salads and vegetables. My favourite so far has been raw salmon with a samphire and seaweed salad….hmm or is it tuna with quinoa pasta and fresh tomatoes? Our portion sizes aren’t massive and we avoid any extras after we have eaten our evening meal. Alcohol doesn’t play a part during the week and even at weekends we can go without now too depending on our plans.

I feel blessed that my life is with someone who truly cares about me. I know this because not only do I see it in his actions but he tells me so on the moment I am about to fall asleep and as soon as I awake (or move!) in the morning. I really do have it all.

I am so lucky that I have choices with my life; whether to work or not and what treatments I can have. Right now there are no such decisions but this could soon well change. I am having MRI and CT scans tomorrow and the results in about two weeks. Then we shall see what is next in this chapter of my life. I am hopeful for a hot sunny summer and I will not be needing any treatment. I’ll hang on to that until I get the answers. For now Bear and I will live in the present and enjoy every minute we can.

I’m looking forward to some mummy cuddles tomorrow and as a step nanny I was happy for some snuffles with my step grandson earlier this week. Life is about love. We mustn’t get confused about that. Life was never going to be easy but try to make it is as easy as possible where possible. Avoid chaos and try to breathe and think of the here and now. Keep things simple. Triple negative breast cancer doesn’t have to be all gloom and doom remember!

It’s May in a few days and it will be time to change our dragons dress up…. I am sure you will all have baited breathe as to what they will look like! Haha…..Watch this space.

 

What’s going on this year?

Well I have been holding it back since the beginning of this year but I have to say, what is going on? Why are so many people in the public eye dying, and of canSer? Last week a comedy great, this week another comedy great and one of the world’s best musical artists! I am just so surprised at how many well-loved and not very old actors and musicians are passing away of this bloody disease.

I mean these people have had good lives and were good people. They lived well and not to excess. You would think they ate well, had a lot of assistance at their disposal yet so many are leaving us due to canSer. Maybe it’s just coincidence but it is making me think, what is happening to this Universe? And 2016!

Then on the flip side it was our Queen’s 90th birthday yesterday and she looks bright as a button. No ill health, nothing holding her back. I feel so proud of her and the monarchy. I love the United Kingdom as we have such a wonderful Royal family.

 This month has been lovely in many ways. Once again no treatments are booked or planned until I have my next round of scans which are next Friday. Last weekend we took in some cultural sights when we visited an exhibition by Andy Warhol, then spent the rest of the day and evening laughing and playing with our friends. I trampolined and forgot I wasn’t 16 anymore and cannot actually do somersaults like I used to! There may have been a lot of drinking and being merry too but I am so grateful that I have such lovely friends in my life.

This week has been calm and methodical. Every day I have had something planned, whether it has been house chores such as jet washing the decking in the garden, to cleaning the inside of the car. I have done my rituals most days and been waiting at the front door for my Bear to come home. He has been lovely and we are eating and living well. All homemade unprocessed foods, low in carbs and sugars, we just feel fantastic. Exercising daily one way or another has boosted our mood and for me even though I feel like an old lady with all the aches and pains I realise that the pains are a sign I am live. I feel on top of things and that makes me happy. I have felt a bit emotional and unsettled for a few hours every evening. I am unsure why as I feel so content with everything and everyone, but then I realised it may be because of the forthcoming scans. The unknown, despite thinking I know the results already.

This week I have been out for lunch with an old friend eating raw and organic foods at a beautiful location and even the sun has had his hat on this week too, until now that is….

A few times this week I have sat in the garden feeling totally blessed and wondering how will I ever get anything done once it is properly sunny in the summer. (A girl can be hopeful!) I love it outside. I love the fresh air, I love the warmth and I love the birdies singing away and my cat chattering her teeth whilst she watches them and wishes she could eat them….

 I have considered, many a time, recently, that I am ready to start working again. But, and there is always a ‘but’. I am unsure whether I can commit to every week as things need to be fluid in my life. Or is it that I have finally become very lazy and just don’t want to work…..I do wonder what the future holds. Won’t I just get bored of not having a plan, and know what I am living for? I know for certain, babies aren’t on the cards. I don’t think we will be getting a dog, as we travel so much. The house needs many home improvements as it ages and crumbles around our ears, so there are things there to focus on. But that’s not me having things to do.

My vision board currently has lovely pictures and quotes on it, but nothing for my future; either this year or in the next five years. I actually don’t know what I want to do any more. I am in such a wonderful position that I have the choice to decide what I would like to do, but now I think I need focus…. Well maybe after the summer I will focus! Haha! Oh and there is the fact that getting well has been my ‘job’ since I stopped working a year ago. If I was to appraise myself, I’d say that I have been doing well at my current ‘job’ but if I had to comment I would add ’could try harder’. Then that’s how feel about everything. I always think I could do better.

 

Remember the dragons that guard our house? Well I recently painted over the bright yellow (when they were trying to be Easter chicks) after the Easter decorations were removed and we both decided that we probably should be normal neighbours and stop this weird little habit that we have. Well so many people have stopped us and said they love our dragons and asked what are they going to look like next, that we have decided it’s something we need to continue… So tomorrow is St George’s Day here in the UK. What do you think?

  

Scan results aren’t until May sometime and up until then I will continue with my ‘easy’ life as I feel it is right now. Research keeps coming in and things are happening around the world for triple negative breast cancer survivors such as trials that can tell you if your circulating cells have changed therefore catching metastases much earlier and before it turns incurable. We have also seen a small device that can be inserted into the tumour within you that releases drugs systematically to see which ones work on your particular strain of canSer. And there is more. We never stop looking and researching and hoping for that ‘one thing’ if that is actually possible.

We urge anyone with any research or news to contact us on our facebook page if you would like share anything…

https://www.facebook.com/TripleNegativeBreastCancer/

 

The weekend is looking like it is going to be cold and bit miserable, but that won’t reflect on me and my Bear. We plan on getting out walking and being outside no matter what… Happy weekend everyone!

 

 

How lucky are you? Me, the luckiest girl alive….

Last week I went to see a doctor at the pain management clinic regarding the pain in my ribs.
The doctor was really lovely and listened to my history and the pain I experience. He examined me and said that he thinks it’s a mixture of nerve and muscular pain. He doesn’t think I should have an injection to stop the nerve pathways as they can sometimes cause more pain and actually don’t last that long. OK That’s fine with me. He has recommend that I use lidocaine plasters placed over the painful areas. Long term he feels that if the pain increases then I could have tablets to alleviate those symptoms. The drugs he mentioned are old cheap depression tablets that also help with pain relief. The only thing is the side effects can affect sleep patterns and mood. Urgh… well I won’t be having them then! He has written to my GP and I can get the plasters when I am ready. I feel quite happy with that. I didn’t expect to be told why it’s happening but he was open to discussion and said that if I needed to in the future I can see him again for more help.

This morning I spoke to a lovely lady who works for ‘Stand up for Cancer’ the charity event on Channel 4 hosted usually by Davina McCall. She wanted to talk to me about my story and kind of interviewed me to keep my details for any media thing that I may be suitable for. At this time she is just compiling stories. It’s kind of cathartic discussing my history. It can be a reminder of the last six years and I suppose I do forget the details. I must have sounded very positive and upbeat as the journalist picked up on it. We did discuss though that if she had called tomorrow I might have been different as every day is different as I never know how I will feel.

Today, I have nothing to feel sad about (except my hubby is away on business for a few days… humph, no cuddles for me tonight. I’d best wear my warmest pyjamas as he won’t be here to keep me warm! Whaaaaa!!) First world problems eh?
But really things are going ok. My cough is annoying, my ribs are still causing issues and I am slightly concerned about the wheeze I can hear in there. If I actually sit back and think about things then I do feel worried that my treatment for future is unclear. But this will be acted upon once I get scan results next month from scans I will be having at the end of this month.

Emma, the journalist, asked me what is it like living three months at a time, as this is how often I have scans. I suppose it is weird and I explained I would like a ‘normal, ordinary’ life but what is that?

What was I like before canSer? The same really I guess. I partied a lot, had nice holidays and surrounded myself with friends and family.. the same as now then really? Well in fact I probably do more of the good stuff! But I guess the main thing that is different in me is that I care more, I feel more grateful. I feel conscious of my existence and have taken many hours thinking about life, death and dying. Fear is probably a huge addition to my life as I lived in ignorance before. Haven’t we all done that? Ignorance is bliss.

So much of me wishes I didn’t have to live with this annoyance of a disease. Triple Negative Breast Cancer has been the bane of my life, naturally and for those around me. Life isn’t fair. But then I look around me and my reflection in the mirror and realise how bloody lucky I am. I don’t really suffer that much. Only being neurotic and high maintenance is a problem! But then canSer had nothing to with that! Haha. I have so much fun, and love all around me.

Love is the answer! I’ve talked about this a lot but really everyone needs a reminder. How lucky are you? I have canSer and once upon a time was obsessed with when I would die. The fear, the unknown, the worry of when and will I be alone and what about leaving my loved ones behind? But it’s a fact of life. I know I will die but I am hopeful cancer won’t be the thing that takes me. So when you look at it that way what is the fear of having canSer all about?

Once you appreciate that you are doing everything right. Leave the regrets, the what if’s, the ‘if only I had done this’ behind and live today and every day with a smile on your face and so much love pouring from your heart then life is bbbbrrrrillliiiaaanttt!

Peter and I had a lovely weekend with friends here from Ireland and we have had an absolute ball. Such happy memories. Life is about living it. Sometimes you need to step back and take stock and be kind to yourself. The rest of the time, God willing, get out there and envelope yourself in the light and the love. Follow the ten point plan on my website and it has the essentials for life. We need mindfulness, physical activity, good nutrition, an open mind and above all else gratitude and LOVE!

I don’t have the Monday blues, I just want to feel excited and happy for as long as possible and for everyone around me to feel the same way.
CanSer doesn’t have to be doom and gloom. I know I have been provided with the best support from my nearest and dearest and complete strangers. It has bought so much goodness to my life. That is what we should all focus on. So if you are having an off day. Here is a big hug.

Light and Love

X

 

An appointment with Prof D….and has spring finally sprung?

Bear and I decided it was time to have an appointment with Prof Dalgliesh. It has been more than a year since I have seen him and although I do email him updates he is a busy man and probably doesn’t really remember everything that is going on with me. The reason for going was to see if there is anything new, and to see if he could fill us in and maybe point us in the right direction with regards to all the news and publicity regarding immunotherapy and genetics.

As always the meeting was brief (but expensive) however it was good to see him. He seemed genuinely pleased to see us and more so considering my diagnosis over the years and remissions and progressions and so on. For someone who has had it for six years, in the breast, brain, spine and lymph and lungs at all different stages and size with and without symptoms. He seemed pleased with the treatment that I have had and am continuing with especially as he recommended I see Dr Nesselhut in the first place. He did know there are changes for his German friend regarding Newcastle Disease virus and whether Nesselhut will be able to continue using it or not. But nothing more than that really.

We discussed how useful Newcastle disease virus is for some and although I have never had remission using it we do feel that that it is working on some cells in my body and that is why I am stable and healthy. He said that there is probably a residue or build up of NDV in my system so not going to see Nesselhut as often isn’t a problem. Dalgleish also endorsed the use of nivolumab and ipilimumab. We asked if we could have them over here now. He confirmed that both drugs are licensed for use here but are probably more expensive to be treated here because of having it administered at a private clinic. This I am to find by calling a clinic he has recommended in London.

He did say that Newcastle disease virus is obtainable in Holland and will try to find a contact for me.

We came away a bit underwhelmed as always. We never feel we really got much out of the meeting until a later date when a little gem appears. But for now we are back in his thoughts so maybe he may consider me when thinking about treatments.

 

Today is a beautiful sunny and crisp day here at our ranch…Haha… The cat is asleep somewhere, the neighbour’s dog is chasing bees and I have been sitting on the decking having some oolong tea. As normal my hands are freezing but my pelt/furry bonnet has some heat on it. Lovely….My hair is now at a length that it really could do with a trim around the ears but not long enough to look cool.

I had a letter this morning form the hospital telling me the pain clinic appointment I had in July has been bought forward to a few weeks’ time. Apparently my oncologist (good old Prof Harris) has asked the pain team to see me sooner. I am so grateful.  For a while I thought well I don’t need it but this week just proves how quickly things can change again.

The niggly cough caused by irritation from the microwave ablation hasn’t subsided but actually seemed to rear its ugly head more. This has caused the pain in my ribs to travel under my arm and is really sore to move and caused some spasms around my neck, to the point where I couldn’t turn my head! Argh… stupid body.. Well there was a plus side. I got a massage from the Bear and after a good night’s sleep the pain in my neck had relaxed slightly. It’s much better today although when I cough or sneeze I could go through the roof with this weird pain.

 

Tomorrow I have my mum visiting and then we are off to good old London town for a girly trip to celebrate a belated Mother’s Day. I am hoping the weather stays bright all weekend so that I can venture into my garden to actually do some gardening. I am sure my mum will be well pleased with those plans! Ha!

I am wrapped up in a big polo neck jumper and I have a fresh pot of tea ready… I am off to enjoy the last rays of the afternoon. Don’t forget the clocks change this weekend!More light in the evenings… Yay!

Light and Love. X

 

 

Returned from Germany with changes afoot….

My mission currently is to stay healthy and to get fitter. That is why I now go to a personal trainer for a few half hour sessions to motivate me and distract me on days like today. I have no reason not to feel chipper but I feel tired and sluggish which is probably due to treatment in Germany on Monday and Tuesday.

Fitness is the key. It keeps us well, it’s social and can make one believe anything is possible. Last Sunday Pete and I decided to have an exercise session to start the day then we went for a long walk (or climb as I like to call it!) to White Horse Hill. Boy that was steeper than I expected but it felt great to be up overlooking the fields and breathing in the fresh air. I am trying, really I am. I know it’s my head more than my body that stops me. But as I have been told, I have to allow days where I am not bouncing with energy.

Todays’ session was great. In half hour I did some tai chi moves to warm up, some pilates moves to work my core. I used one of those funny half ball things to balance and jump whilst doing squats and lungs, I twisted whilst using a medicine ball and some! I now feel great, satisfied and pleased I made the effort.

 I had treatment at Dr Nesselhuts’ clinic at the beginning of this week, but things are changing. It seems that the pharmaceutical companies are now taking control over the doctors. Nothing much to be said but there are changes to my treatments and the future is uncertain there. It’s the first time in a long while, I have come away without having booked my next appointment. Who knows what will happen?

The treatment I did have has sparked a response in my arm as usual, and is swollen and itchy and a little lumpy in places. It will probably be gone by tomorrow.

I have contacted the hospital to ensure I have my next CT and MRI at the end of April, making it three months since my last scans. Pete also felt it is now time to see Professor Dalgliesh again. It’s time to discuss what has been in the news regarding the breakthroughs and the genetic treatments available. I have also contacted the Dr who suggested genetic profiling a while ago to see if that something that would help me with potential bespoke treatments. As well as this I wondered if now I would be able to have laser treatment with Prof Rolle, a well know thoracic surgeon. I have contacted him and he wants me to send him details and scans so they can consider it.

This is all assuming the next step. I am not being pessimistic but I have to keep one step ahead. We know that Dr Nesslehuts’ treatment doesn’t cure me. Last year and a few years before I still had progression despite his immunotherapy but I do believe that his treatments keep me well and who is say it isn’t keeping the tumours stable as they have been for some time now, especially the brain.

We do know Prof Vogl’s treatments do have an impact on the tumour sizes but I am hoping that the ablation I had in January really is going to send the larger tumour in my right lung packing.

Not forgetting everything I do at home. It all counts. Pete and I were saying the other day, wouldn’t it be ironic if it was the DMSO injection that costs £25 that is doing the trick or what if the supplements I take now are the one thing that is working?

That, we don’t know, and that is why we have to keep searching and moving and staying alert. But bloody hell, just give us a break. That is what Dr Nesselhut said to us too. He said you need to live, so having a few months until the next scan and treatment is good. And it is good. I know that and I am not going to waste my time worrying as we all know worrying is wasted energy.

In the last few days my ribs are hurting more. That bloody cough still hasn’t gone. I feel I am doomed to harbour this annoyance forever more! (Dramatic enough??) It just proves the irritation from the ablation is still there. But laughable that I have to wait until July to go to the pain clinic to try to stop the pain in my ribs! That’s the only appointment date I could get for. Ho hum…..

Easter is around the corner and holidays, hopefully, to plan for. Time with my love and loved ones. Making memories.

Love and Light.

 

XX

 

 

Plodding along nicely.. and it’s March already!

It’s March already! The evenings are staying lighter for longer and everyone seems a little more optimistic despite the heavy rain and winds and now a threat of snow.

Most days pass by quickly and I continue to wonder how did I ever fit working in? I have to admit I am a sleepy kitten still. Last weekend we made a pilgrimage to see our friends in Ireland. We don’t do it enough but there’s probably a reason. We came home tired from late nights chatting and having fun, making memories and ate a little too much and drank far too much! Haha…

With sadness we came home but not for long as we have plans in the summer to look forward to.
Our kitty meowed loudly when we walked in the door and has ever since followed us around. Our dysfunctional cat. Doesn’t like being touched and everything has to be on her terms. I love her with all my heart…. Funny little animal.

This weekend is Mother’s Day. I have plans in a few weeks for my mum but it struck me how hard it can be for so many woman suffering any kind of canSer who has had that opportunity of being a mother taken away from them. Now I am not feeling sad or ‘poor me’ about it. I certainly am not, in one respect, as I have step children (and a step grandchild! Can you believe it?! I am far too young. Haha) But I never had the opportunity to have my own. Bad timing is to blame and even if I got the all clear, I am now too old. My body doesn’t want to work as I have not had any monthly cycles for well over a year. That’s what chemo can do for you. My body is all confused!  I will never experience that unconditional love and warmth and the feelings of having my own child but instead I will cope with my fur baby. Poor kitty! Haha!

Life, this week is plodding, along nicely. I have been for one training session and felt so tired from the weekend, I was embarrassed at how little energy I had. But a good night’s sleep should never be underestimated. I was different woman yesterday. I went to a yoga class and came home with aching butt cheeks. That’s what I call a good yoga session!

My health seems pretty good. The cough is there, on and off, but I feel that the lungs are improving. I am feeling confident in myself. Next week we go to Germany for treatment with Dr Nesselhut again. It will have been 8 weeks since my last session with him. I feel a sense of relief knowing that there is more treatment inbound and that I should essentially feel quite well afterwards.

The focus for the next few months is to get strong and fit and with the longer nights Pete and I will get even more active going out for walks and training in our gym room. I am liberating more space by getting rid of some furniture to ensure we can train as much as we like.

There is always plenty of research popping up for potential treatments for triple negative breast cancer. Immunotherapy is still very much in the forefront of the news. I always want to point out though that I don’t rely just on immunotherapy. I combine all treatment. Right now I am not on chemo of any kind but I have had surgery. I do continue taking supplements and doing every element of the ten point plan.

I even got a call last night from a journalist whom did an interview with me in October 2013 and they are considering bringing that story back out again and dusting off the cobwebs by adding a few more up to date details on my current status. I did give them details to say that since then things have gotten worse and better. I think people just assume that you treat the canSer and then it goes away. With metastatic canSer of any kind it may never go away. Mostly it doesn’t for the lucky few it can. So I hang on to the hope that one day (soon!) I will be living proof of that.

Ground breaking vaccine using immunotherapy… Is this the answer to our prayers?

Since last Wednesday I have felt much better. In fact Thursday I felt completely different. I had a new outlook on everything and had a really productive and fulfilling day. Weird how sometimes you just need to get it out, get over the wallowing and feel cathartic, refreshed, renewed. I am sorry if I upset anyone but it was really good therapy for me.

So the week has been quite eventful for me, visiting my dad and brother whom I haven’t seen for years. No reason really why u haven’t seen them sooner but I figured I needed to make the effort and it was well worth it.

Then I went on to see my mum and spent the evening there snuggled under a blanket together watching TV with her cat on her lap. For dinner we ate my favourite meal from when I was a child; Cornish pasty, jacket potato and baked beans! Yum!

Today I have been to my personal training session. She has already increased the walks that she has prescribed me and has got me using muscles I didn’t even know I had! I feel great maybe a little tired and shaky, with arms that represent a Tyrannosaurus rex (very small and inadequate!)

But that’s not all that has been going on this week. There has been ground breaking news of the immunotherapy trial that has had 94% success rate with complete remissions. I want to shout out ‘wow, how exciting’, but I have to admit as much as this is brilliant news especially for those with blood canSers at this stage Peter and I are not surprised. We have always supported that immunotherapy is the answer to stopping canSer in its tracks using T-cells otherwise known as dendritic cells.

What was really exciting about the news released this week is that the vaccine that the patients were given will now actually detect and stop that canSer from returning. So in the true sense of the word, it really is a vaccine against blood canSer! Genetically modified cells to search and stop. This really is awesome! Now they need to develop a vaccine like that for every canSer, solid tumour canSers, triple negative breast cancer.

I am certain that when I see Dr Nesselhut next he will not be surprised by this news as he has been providing vaccines for many years. Not identical to the one reported this week but still. I currently have vaccinations using my cells that have been primed and worked on in a lab as well as using other solutions such as nivolumab.

If you haven’t had the opportunity of seeing this research/news here are some links to our newspaper reports;

https://www.theguardian.com/science/2016/feb/15/cancer-extraordinary-results-t-cell-therapy-research-clinical-trials

 

Obviously there is a long way to go before there are treatments like this used for the likes of you and I. Years still. The trial did have some devastating side effects on a few, mainly two, who died from a severe immune reaction. So it’s not all cut and dried but very hopeful.

This is today’s news mentioning nivolumab and ipilimumab. Nivolumab is being is expected to be licensed for use this summer in Europe.

http://www.telegraph.co.uk/news/health/news/11641771/Cure-for-terminal-cancer-found-in-game-changing-drugs.html

Peter always said, right from the day I was diagnosed with incurable (apparently) canSer in 2012 that in five years there will be cure or a treatment that can keep me alive until I am old and grey. We are almost four years in and he is absolutely right. It feels like that there is a race on to find a cure, a vaccine, for this deadly disease.

With this positive thought in mind I am going to continue living, being, and loving. It’s a bright, cold afternoon here and I have much to live for. Plus it’s almost the weekend again when I get to spend it with my One, my Bear.

Love and Light All……

XXX

 

 

 

 

 

I’m having a weird Wednesday

I’m having a weird Wednesday. In fact I am having a weird week so far. After the good news last week I had big plans for this week as it was predominantly free. I planned on doing lots of work updating my website and writing the survey, and exercising more and chatting with my builder friend (hoping to plan doing our kitchen) and doing all sorts but no pressure. Then I went and broke our car. A moment of distraction and I drove into a kerb damaging the alloy and tyre. Argh the cost and the inconvenience!

That one act has left me feeling gutted to be honest. I keep making mistakes. I keep making my life difficult. I keep putting obstructions in the way. Then Sunday night I awoke feeling sick. That has now meant almost three days of a stomach bug. And not just me. But Pete as well. We spent most of the day in bed on Monday. The problem is with this is that it means that we couldn’t consume anything. Again weight loss and trying to remind myself of what foods I like.

What is going on with us? I wrote on our kitchen black board that 2016 is going to be better. So far it is but isn’t. We seriously have had the most eventful start to the year. What is all about?

So today I had to make changes again because I woke up in the middle of the night bloody coughing… That bloody cough! Then my mind started whirring and I laid worrying about things; stupid things really. Things not worth worrying about. My head is a mess.

So things haven’t been a complete waste. I did meet a lovely lady who is going to help train me. Keep me on my toes and give me guidance. Sounds exciting? It is. My own personal trainer. She’s going to hold my hand and with the information I have provided help me become fitter and brighter.

She must have boosted me because the next person that saw me was my window cleaner, who said I looked much better than the last time I saw him. I must have looked awful!

You know, I have just had a little call from my bear. Who despite feeling under the weather has been going to work. He knew somehow that my head hasn’t been right today. It hasn’t been helped by a migraine.

I decided that I need to meditate and do some stretches. That helped me clear my head somewhat and I decided to write how I feel.

I am lost. I think. I am working hard at staying well but I think I have lost who I am. I like helping everyone and I love everyone’s support on Facebook and those that follow my blog but I do feel trapped by canSer. I know it’s not going to disappear that easy and that despite my good results I have to be well aware that the battle isn’t over. But I do feel like something is missing.

Go back to work then? Well I don’t want to let people down by cancelling. And at the moment that would’ve happened a lot. I have defo lost my drive to work. I am that lucky not to have to right now.

I don’t want to clean the house. I don’t want to sort my overfilled cupboards out. I have no idea why the house smells so bad of cat! And the weather is keeping us internalised. Bloody rain and wind and for goodness sake, do away with all these storms. Goodbye Storm Imogen. Who’s next Storm Jethro?

Weird things are happening. The storm has taken our metal watering can, all except the rose on the end! It’s nowhere to be seen. And my friend told me that his neighbour has lost three fence panels. They are nowhere to be found. I mean what a weird week so far.

It’s good to think. It’s good to write things down. And I have mulled on things all day. My stomach aches probably a mixture of bug and anxiety. We put ourselves through so much stress for nothing. Doing is better than not doing sometimes.

Do I feel better for having put this on paper so to speak? I thought I would. But I am no further forward with what I should do.

I need bloody therapy! But what kind I don’t know. I need solid sleep. I need calmness. laughter, happiness and the freedom of my mind. I guess that’s what we all need. This world is so complicated now. I like simplicity. I am a simple person. In more ways than one!

Not long till Bear is home to take me for another walk and through exercise and love I will get better…… That’s where I am going to leave it. Simply.

A belated Happy New Year… Come on 2016!

I am so surprised how long it has been since I last wrote a blog. I guess that means I have had a lot going on and nothing major to report but actually I have written so many blogs in my head I wish they could all be done telekinetically!
I wanted to wish everyone a lovely Christmas and New Year but I simply didn’t find the time. Now that’s not something I am proud of as writing this blog is really important to me and I love sharing the love with everyone too. As I always said this blog isn’t all doom and gloom.
So let me take this time to say a big huge thank you to all my lovely friends and family and followers. Without you I wouldn’t be here.

A quick synopsis of how 2015 ended. Christmas was great fun with my mum and step son here at home with us. We had the pleasure of ‘German’ Christmas on Christmas Eve with my step daughter and grandson! What a cutie he is. I had great pleasure in giving our gift to them; a toybox that I had made and decorated with dinosaurs. Something I hope that he loves and uses for many years.
Madly we decided to go away on Boxing day, the 26th, getting up at 3am. What?! I hear you cry. I know, it seemed like such a good idea at the time. That said who needs their bed when they are about to spend a week in snowy Austria.
Sadly, Austria wasn’t all that snowy when we arrived. However we were staying in a high resort and the pistes had been managed amazingly. In fact almost all pistes were open for the whole week. By the end of the week new snow started falling. Thank fully for them. That meant we got the best of it all to a degree. Bright blue skies, clear visibility, and warmth, so not having to wear so many layers. In fact it was positively balmy! Sunbathing at the top of a mountain is the simply the best! Go Tina Turner! I hadn’t forgotten how to ski and we whizzed around the resort loving it.
There were a few hiccups and hindrances however. On arrival as it was early our room wasn’t ready. That’s fine. We still went out and enjoyed the first afternoon testing all the pistes. The staff had said they would move our bags to our room. We came back asked for the room number and key and promptly went to our room to get ready for dinner. We walked in to complete darkness then heard a few foreign voices speaking to us! Whatttttt? We got out of there quick and trying not to blush too much went to reception and found she had given us the wrong room and room key! Ha ha.. how embarrassing.
The next night the fire alarm went off. In our daze we got dressed and went downstairs and stood out in the cold There wasn’t a fire. So with all the confusion I asked the receptionist what was going on? She said nothing. So we went to bed. Weird night.
On the day of arrival I started to feel really rough. Just a sore throat and stuffy nose I thought. How I was so wrong… For the rest of the stay I felt terrible. It was possibly the worst cold I have ever had. In fact I am still blowing the weirdest coloured stuff out of my nose I have ever seen. ( Too much information?) I blew my nose 7 times the other night in the space of one minute and it still wasn’t clear. I am right now so bunged up it is unbelievable.
The rule when we go skiing is that we never miss a day. The only reason to miss a day would be hangover usually from the apres ski the day before. No. Pete won’t allow it. And it was the same with having this cold. I tanked myself up on decongestants and pain relief. In fact getting out and about was the best thing we did all day. We did finish very early some days and I got tucked up in bed fully clothed as I couldn’t stop shivering.
The other downside to having a cold is that my appetite went through the floor. I came home lighter than I went and now I am not feeling bad about all the Christmas gluttony.
The weather being so warm meant the snow conditions were icy at times and then by the afternoon like slush. We are experienced at skiing and know how to handle this situation however one afternoon I fell flat on my face. I banged my head and really hurt the left side of my body. I was wearing a helmet thankfully but my head really hurt and then a few hours later my neck was absolutely killing me. Whiplash. Great, my week was going well. Luckily the head repaired quite quickly but it did give me migraines at night along with such sore muscles in the neck. The migraines and neck ache really scared me. It made me question whether the brain tumours are back. I thought in my gut- nope. But I had been having the odd migraine before the bang on my head. Why? I was worried of mentioning it to Pete as it scares the devil out of him too. But stupidly my mouth flaps too much and I divulge everything to him. I quickly back it up with details of how it was different the last time.
It sounds like I was just having all the ‘luck’. However Pete also wasn’t having the most ‘luck’ either. He fell twice during the week which left his bottom black and blue. He also got the cold and a cough he hasn’t been able to shift for months, once again got worse. What a bloody mess we were and still are, actually.
All the time this was going on, in our minds, all we thought was what are we going to do about going to Frankfurt next week. Earlier in December I was umming and arring about my next appointment with Prof Vogl for microwave ablation. We eventually decided sooner was better than later but then this cold and cough came. If it had been last week I definitely would have cancelled however as I am really feeling ok all except congestion we have decided to proceed with our plans.
It’s not how I really wanted the beginning of our New Year to go but I figure that I slam everything now that it could give me a chance of a GREAT 2016.

I want to take this opportunity to let my Bear know that he was an absolute star last week. I didn’t want to do anything. I cried most of the days and whined about how bad I felt almost 24/7. He simply hugged me and said we would have fun no matter what. Can you believe a cold reduces me to tears more than canSer?
I tried not to think about going to see Prof Vogl. The procedure is going to be tough purely because I am scared of being awake whilst he ablates the largest tumour in my right lung. It’ll take 15 minutes apparently. I just hope I don’t feel a thing. That is my fear.
We have to stay a little longer than normal and I am acutely aware of the pressure Pete is under to run the business and get the year started off fast and furiously. He seems very upbeat about it all. However we have to drive to Frankfurt this time. I am not keen on flying home when I have just had my lung punctured. However I hope that I recover as well as I did when I had radiofrequency ablation in 2014 as I am due to fly to Hannover the following week to see Dr Nesselhut for my usual cell treatment.
Oh the life of a triple negative breast cancer survivor eh?
I am of course blessed that I can have all these treatments and that despite a big snotty nose and a deep voice I am living well and symptom free. I generally nowadays don’t think about dying of canSer. I am certain I getting there.
So with you being completely updated I hope that 2016 brings everything you want and need. Most of all love and happiness and a cure for triple negative breast cancer and treatment to keep us living longer and healthier. Light and Love.
C
XX

Fighting for our lives…..

Friday night I watched Text Santa, a charity event on tv that helps raise money for three charities. They focused on stories of certain families that have been helped by those charities. One was making wishes come true for terminally ill children and another for Macmillan nurses who care for patients and their families whose life is being cut short by terminal illness.
They do amazing work and I was left feeling positive in many respects with the work that they do but what really upset me was how accepting the families were of their diagnoses. I felt really upset, firstly that their lives were being cut short and they were leaving their precious loved ones behind but more upset that the families were accepting what their doctors had told them.
Now I don’t know the ins and outs of all the stories and maybe they did fight for their existence but it seemed and came across that they were just accepting the news their doctors gave them. ‘You will not live to see your children grow up’ or ‘your child will die before their next birthday’.
I wanted to shout at the tv, at them and wanted them to fight. Don’t leave them behind. There must be more that can be done!
We cried a lot, Pete and I, as you do, watching the footage on the fundraising show and I am certain they must have raised millions of pounds but I found myself sobbing and feeling really frightened.
Am I the one that is different? Should I simply sit back and accept the news that I was given 3 and half years ago? That I am going to die and to put my affairs in order. Enjoy life as you haven’t got much time left.
I believe that over the last three years I have done everything that I could do and if I hadn’t I know for certain I wouldn’t be here now. The progression of the disease should have meant more complications and certainly death, especially with the diagnosis of the brain tumours over a year ago. I know how quickly one can deteriorate at that point and I am just so blessed that I didn’t think that at the time, instead we went into overdrive and had as much treatment as possible. Without the love and fight from Pete I know for a fact I wouldn’t be as well as I am.
It is only a matter of time. There will be a cure or maintenance of triple negative breast canSer and all other canSers that will keep us fit and healthy with very little side effects. It’s probably already there. It’s just the pharmaceutical companies are holding back and making money. It’s beneficial to them not to let us get better. It’s better to keep us ill.
Look at my friend who three years ago was told he had terminal lung canSer who now has had the all clear… It’s not fake. I personally know him and he did it with a combination of treatments and supplements and self-help. It can be done. And everybody’s disease is different.
I know we don’t get out alive and that some die sooner than others but I feel very passionate about making sure we at least give it a try and stay with our loved ones for as long as humanly possible.
I’m still banking on being here for decades so until there is a treatment offered on the NHS that is suitable for all then I will continue looking for answers, with the support of my Bear.
Today alone he has sent me many links to research he has found. He breaks up from work for Christmas today. I can’t wait.
Jingle bells, jingle bells, jingle all the way!…..