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.

untitled

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

 

Heart Warming Happy Dragons…..

Why does it always feel that the first few months of the year fly by? I have so much expectation and happiness leading from the darker months into the longer lighter ones. I am loving the changes although I feel it’s almost too early to be having later nights when the season and weather does not reflect it. That said Easter was earlier this year… To follow the pattern of late I decided to decorate the dragons that guard our house once again. I know they look naff but it really makes me laugh. I started decorating them in October for Breast Cancer awareness month and have continued through Christmas, Valentines and now Easter. I tried so hard to make them look like chicks but ducks will do.

12472752_995041677260546_9199044662338655878_n

We left them guarding our house (more like attracting far too much attention) whilst we went away on a little break together. Knowing the weather has been unseasonably warm and mild we dared to go for a last minute ski trip to Austria, this time to a resort new to us. We had a fantastic time despite the snow turning icy then slushy every day. We were lucky with some days with fresh snow so got up really early and got the best of the skiing in before it turned midday. Some days were so warm and beautiful that we even sunbathed in deck chairs and Pete has definitely caught the sun on his face! It’s just what we needed.

On our return we had a pile of post as usual. One letter was confirmation of a pain relief appointment for me this week to try to stop the pain in my ribs. Good old Prof Harris got on to the pain relief department and had them see me as an emergency.

Also we received a lovely bright Easter card from children that live in our village, who said our dragons make their day. It was so cute and so heart-warming. They had drawn pictures of bunnies and eggs and all signed the card themselves. We were so touched. I didn’t know if I had gone too far with my crazy ideas and decorating. Clearly not! Then Pete was out cleaning the cars and locals that walked past all said they loved the dragons and couldn’t wait to see what is coming next! How funny, I had no idea I was actually bringing happiness to anyone that passed by. They are our ‘happy dragons.’ Well I have changed them to another colour but have not dressed them up yet for the next event in the calendar. (We have been working on it this weekend!) Watch this space!

Daily I get updates from Peter where he has found more research. Genetics are still in the main frame but also ways of detecting and stopping triple negative breast cancer from spreading and becoming life threatening. It just keeps coming but nothing much is showing leaps and bounds.

On a personal note I am trying to live a normal life and not focus on canSer too much. I have booked my next CT and MRI scan at the end of this month then all the news has to be filtered to all doctors that I see across Germany and the UK. Pete and I get a gut feeling mostly and overall we think the results should be good. The only thing slightly worrying me is the cough. I do wonder if it is the lymph node growing larger again or is it simply where Prof Vogl went so close the bronchial region during microwave ablation that it has left it scarred and irritated. Well whatever it is I am hoping that it’s nothing for me to worry about.

This weekend was the first weekend Pete and I got out in the garden this year and got lots of jobs done. It was hugely satisfying and even more satisfying sunning ourselves in the afternoon once the work was done. You have to take the vitamin d when you can!

Speaking of vitamin D, I have today ordered a test to be sent to me and I will get that done by post. They will email the results as usual. I am curious to know what level I am as the last time I was so high Prof Stebbing said he had never seen anyone with such a high level of vitamin D! Oops…

Next week I am hoping to speak to a genetic doctor whom specialises in working out the individual’s profile. This could be interested as I don’t think I have any tumour sample left and I am hoping there are no tumours inside me to do a biopsy. I would love to hear the words ‘No Evidence of Disease’…..

Anyway, I am well and healthy-ish and I am a work in progress; trying to get fitter and look forward to everyday as it comes.