Flu might kill me

I’m sure survivors should be tougher than this. I was in a coma for nearly a month, then paralyzed on my left hand side. I had to learn how to walk and talk again. I then broke half of my body. This is before operating on my eye to get rid of my double vision only to be followed by breast cancer. Oh the joys of the last 3 years!

The problem is this. My immune system has been shot since the first accident. If I get a cold or a flu or any disease my body gets fully involved. My natural defense has been so out of order that I end up in hospital every time I get a cold… We have been very vigilant and lucky this year not to catch a single flu/cold as the chemo would have been totally upset by this. As the radiotherapy has been going on I’ve stayed illness free… Until my family arrived from Mallorca. 

What was supposed to be a lovely trip to London to meet up with me and go and see wondrous things, ended up with first Millie and then Mel and Myrna getting ill, closely followed by me. I’ve got my emergency antibiotic but I really don’t want to use them if I can avoid it. As it felt more like a virus rather than bacterial to start off with, the antibiotics wouldn’t have helped.

Mel was too ill to fly back on Monday, and as I also had the same symptoms I thought it would be ok to have her with me. The sad thing is I’m now on day 4 of fever. Even though I manage to get rid of the fever with lemsip it always comes back! Last night was the killer. 38.6 degrees fever and a sore thought that felt like someone was torturing me by cutting sharply every time I coughed.

Now my mucus cough is turning a yellow color… I think this means that I can take the antibiotics. But as everything was so awful at 3am I called the out of office duty nurses at the LOC. They wanted me to come into hospital straight away. I said I couldn’t as I had little Mel here, but they have arranged for a doctor to see me today. They called Dr Jones around 4am, which I’m sure she is used to, and it’s probably part of her job, I still feel awful about it.

My mum is here in London now. She arrived Monday night so for me it’s excellent! She can look after Mel today. I’m not sure if they will keep me in. But paracetamol doesn’t seam to shift this fever… 

Keep smiling 🙂 what else could you do? Crying only makes you waste very important water!

Gin Yoga? Yin yoga!

I knew I was allowed to do “gentle yoga” from last Wednesday. That did not include any downward facing dog or any pose involving any handstand or anything too strainous. 

As my background in yoga is ashtanga and the last couple of years vinyasa and kundalini, I know the dog of the downward facing variety is featured quite a lot even in “gentle yoga”. My friend Rebecca said -“you should try Yin yoga!”. 

The only Gin I know of previously are the drinking kind, Tanquary or Bombay Sapphire… But I agreed to come to a class today with Rebecca. It was very gentle. I don’t know how else to describe it. We were using lots of props to get into position, and it worked even for a newly operated on person! It was an hour of stretches and very gentle movements that made the rest of my day feel very cheerful! 

I know my family is coming tomorrow and with only 1 sleep to go I cannot help but feeling excited! London is going to behave more or less weather wise. I think we are only promised one rainy day in the 5 days they are here!

Today was a rainy day! I was thinking of going to the zoo, but as I was carrying around my ruck sack weighing over 10kg I decided to buy some food for the crew tomorrow!

Keep smiling 🙂 a short note of something happy should ignite you! 

 

Hot or cold

Tamoxifen or in Spanish Tamixofeno is the only medicine I have to take daily, for the next 10 years…

The possible side effects are so many. I was hoping to list them here but it’s more than 4 A4’s list of possible side effects. The ones that you have to be wary of are these ones, you can get cancer from Tamixofen or you can go blind. Neither of those feels like a side effect I would want or need. 

The side effect I have started to get after being on the drug for a good 20 days is hot flushes. For you women of “that age”, you know what I’m talking about. So I’m not naturally at “that stage” yet, but thanks to Tamixofen I feel HOT!

Honestly, it should be a cheap year for me as I shouldn’t need any central heating, or clothes. Although saying that, the increased hotness during some times also makes me feel super cold at other times… Can there not just be easy for once? I am dressing in full training outfit with sweat wick-away fabric to not end up wearing wet cold clothes.

I haven’t known sweating like this. Maybe a good time to start taking up hot yoga? As I’m already so hot it shouldn’t be a problem to get to the Shavasana stage. I could even just go to “normal” yoga classes and they should turn into Bikram just because of this inner fire burning.

I don’t know if this is a 10 year thing. Will it stop when I stop taking the medicine? Only to then start again as soon as I get to “that stage”? I don’t feel very glamorous dressed up in my winter sweatpants and colorful sweat tops. I’m wearing my wig now as my hair has started thinning even more… My stripey okapi hair is growing in length but as its thinning it’s easier and warmer to wear a wig… 

Oh the problems, never mind. The radiotherapy is going ok. Bella is now turning a nuked purple color, but this is not totally unusual, I will let Lovely Lisa, the breast care nurse to have a look at her today.

Keep smiling 🙂 the weather in London has been incredible so far this autumn!

  

No glow in dark yet…

I am a little disappointed with radiation therapy as a whole. It’s only time consuming, there really is no challenge to it. Being me, I always challenge self and will go to lengths to find and make challenges on the way so to make the journey more exciting! Therefore just being put on a hard surface to basically have radiation rays projected through me is not enough. 

I have to make up little stories along the way, about everybody that I meet along my journey. It was easier for some reason when I was in hospital. During those 11 days my mind peaked in sharpness and I could remember everybody’s names and life stories. Now I struggle to even remember names of people that I do know.

I make up names and stories about them all. I’m super sure they don’t ever want to hear about their whole new life stories, or their new names… Calling a woman Boris is not nice I know, but it basically isn’t my fault! It was her mother who was an avid tennis fan! (Note to self, “you are still responsible for giving fake names to the staff and can’t blame such fake names on their fake parents as they are all made up in your sick slightly under stimulated mind.”)

Today as I was walking to my radiation I was met on the pavement by a super smiling face. I was listening to One Republic and for a few seconds had a problem placing the face and smile. It was Claire! A super show jumping friend from a life time and a half away. It was triply surprising as she also lives abroad! It’s funny some friends that you spend so much time with in parts of your life, I don’t often think about them, how close we were, for me they are still there. Still charished as my own private jewellry stash. 

I was starting to do some sketching of my friends. I used to be pretty good. Not so much any more. I really suck! But my lovely husband recommended I should put my work on Facebook for people to guess who they are! It’s a slightly embarrassing but totally ingenious idea! When Frieze art fair is over I might do it!!!

Keep smiling 🙂 you might not know your new names or your new lifes but to me you are all vastly important! 

    
 

Healing through chanting

It’s funny how time can be perceived so differently, rushing forward when you are having fun and breaking to a near full on stop when you are bored or tired… Or if you are in fear…

Yesterday both my yogi friends flew over from Mallorca to join in for Mirabai Ceibas spiritual concert at the Tabernacle in Notting Hill. It was quite an experience for someone like me to explore. I see myself as a “yoga-light” person. My husband is beyond doubt more flexible than me, and I do believe his mind is also there when it comes to the spiritual foundation of yoga. Me, I wasn’t there then… But I am now!

The concert started with a local band. They warmed up playing traditional Siekh music, chanting whilst wearing traditional turbans and silver details.

At first Linda turned to me and whispered “-I hope we haven’t gone to the wrong venue”! After a while we got into the rhythms and chanted quietly. The ladies in front of us really went for it and near enough over powered the Siekh performers. 

After 4 songs they withdrew, wearing their religious weapons, and Mirabai Ceiba appeared. 

  
How does one explain music? Theirs is a mixture of chanting and beautiful chrystal like vocals. You are being told to sing along to heal yourself and the world. It took a little time but in the end we had all got it and I think the roof of the Tabernacle lifted  a little as the singer in the band had asked for! 

Vibrations of some music as well as “gongs” can really get to the innards of your soul. We left feeling energized and positive! 

Today they both flew back home. Too short but I can understand. It’s just me stuck in a time warp in London. I think as I have to plan everything each day so not to miss any of the treatment. But with 23 hours to fill, I have decided to cop out and make it easy for me. My days are like this:

Wake up drink water and spirulina, chlorella and lemon drink together with my minerals, vitamins and medicines. An hour afterwards I either have yogurt or green smoothie thanks to nutribullet. This will be around 9:30 that I’m ready to walk out the door. The Zoo won’t open until 10 so I start walking to meet Oni my okapi pal around 10:30. I then have a peppermint tea for a reduced fee at the zoo cafeteria. I then walk through Regents park to get to the Marylebone area. Here I will have lunch mostly at Natural Kitchen. They are beyond awesome! Great food and always new people to talk to if you don’t know anyone! Here I’ll stay until radiation or other treatments. After treatment I have kept walking so the step counter on my phone has reached distances over 12km! 

They say radiotherapy can make you tired, today is the first day I feel tired. But there are so many factors that could make me tired, so I can’t say for sure its the radiations fault. The tiredness I feel is a bit more than physical exhaustion, it’s more mental as well. I think today will be spent at home after the treatment. My sister is flying in tonight for the Frieze art fair that starts tomorrow.

During my walk through Regents park I got a sneak preview of some of the sculptures.

  
I already miss Sandra and Linda, and they were only here less than 24hours… Next week my family is coming, let’s hope the weather will stay good. Makes such a difference! The waiting game alone can make you tired. The aloneness makes time go so slow. How many days until my family arrives, only 9…. How many hours oh over 200…. I should stop counting…

Keep smiling 🙂 when you realize the beauty of the neglected, care for it!

Brottrunk- Health and pleasure for all!

My German super vet Andre Buthe invited me to go to his new place in Wiltshire for the weekend, and as I was planning on doing nothing by myself in London, this was an excellent plan! 

Andre have been my main vet for longer than I can remember, but he used to be based in Essex when I was in Warwickshire and now he has moved to Wiltshire. It’s quite nice to meet some people that you have known so long, but you haven’t spent any real time with them for the last 5 years, Andre is definitely one of those. We sometimes talk on the phone regarding mostly horses, and a little bit about my ailments in the last couple of years.

As a parting gift he gave me a bottle of his “healthy drink” it’s called Brottrunk!!!! For any swede this will seam impossibly funny! Ok I am a bit childish but when people just name a drink or item something that doesn’t mean anything in their language shouldn’t you just check out what said word might mean in other languages? The direct translation is crime-wank! I was super thrilled and imidiatly emailed a photo of my Brottrunk bottle to my brother!

The rest of the Sunday was filled going to visit my friend Catherine that also have moved east on the M4. Fabulous setting and great stable for her horses. And lastly I got to a lovely family lunch at my mother in laws, with my nephew Sander and his mummy Sally and daddy Jacob.

The only sad thing I can tell you is that my hair is yet again falling out. I have been pretty positive about this and have thought it probably wasn’t my hair falling out now, probably was some old hair that was found on pillows and in shower, but after the weekend there is no denying it. My pillow was full of my short but distinctively stripy hairs. I have bought this “Talika” cream that I’m putting on my eye lashes to try and make them grow. It’s still early days but I don’t know… People try and be upbeat about my situation. -“It will grow back!” Thats what they all say… Well in the wait I’ve gone and bought a new wig. Londons cooler climate allowes use of wig much more than Mallorca. It feels much more like me in the longer hair. I don’t look like a tranny either! Bonus point!

Keep smiling 🙂 wondrous things can happen if you just allow them to! 

    
 

Glow in the dark!

Really? Honestly sadly, no. No such interesting effects of this radiotherapy. All it is basically you just lie in a very exact manner, on the millimeter exact to get the Rays exactly where you want them and not to affect lungs or ribs or anything internally.

There are too many hours in my days now. The radiation basically takes 1 hour. I have 23 hours to fill with whatever I feel like! This week my niece has gone back to Mallorca so I have to find myself something to fill in my lonesomeness. 

Walking has become the new rule. The last two days I have walked over 12km/day. My feet are a little sore. So is my back and my poor legs don’t really know what is happening to them. I have asked the nurses at Macmillan if my poor legs can have a deep tissue or sports massage. They said that it wasn’t recommended at this stage in my treatment. But I’m allowed a softer massage! Next week!

As I was planning my weekend of aloneness, my old vet called me, he invited me to go and see him and his son! So I have now managed to rent a car and hey ho- right hand driving here I come! 

This morning I managed to go see Oni, my okapi friend at the London zoo. They had changed Oni and Mbutis paddocks. Oni was hiding, clearly not happy with me and my absence from her. It took a good 20 min of quiet persuading to get her to show herself. After another half hour we had a group of 5 year olds that came in screaming loudly at Oni. “What is that?” “It’s a zebra!” The teachers were tired and didn’t even try to make the kids quiet down. I saw that Oni was on her way out again, trying to escape the high pitch notices, so I leant forward and in a whisper said “She will magically disappear unless you calm down a bit”. Suddenly all of the children got quiet.

I told them about the magical creatures that Okapis are. How they are related to giraffes and Oni now has atleast 20 new super fans that all want to become African explorers when they grow up. A little storytelling that highlighted the magic of the Okapis has now engaged a whole school class! As Oni’s number 1 stalker and fan I have found it my duty to inform any visitors about the wonderful, exciting, magical creatures the Okapis are.

Keep smiling 🙂 if you manage to inspire someone, that should make your day!

   
 

Horse of the year show

2015 has been a year of challenge and tribute. This you feel even more when arriving at the NEC outside Birmingham to compete at the highest level show jumping.
The challenge at the NEC, before any competition is finding out where to go and how to get there. It applies to everything from hotels, restaurants and arenas. The tributes are equal in finding out where to go as well as finding great buys! 
48 hours later I’m leaving with a new bag full of new useful stuff! Hm, luckily I have family members flying over that I will give stuff to so I won’t get too heavy to fly back when the time comes. 
It’s so lovely to get back to this place of show jumping where not everybody have heard about my last three tragic years. As I’m also sporting a new longer hair piece I don’t look ill at all, so people that don’t know just won’t know! It’s a relief sometimes not to be treated like a victim.
My best friend Lisen came over from Sweden to spend some quality time and watch some of my horses. The Drawness became a little unnerved coming into the main arena for the 140cm class. He got a couple down but will probably become a better horse for it. Today they did a warm-up class for the much older international horses. That warm-up they should have for the young horses and it would have been a much more enjoyable class for everybody. Note to HOYS! 
Before I made my way up to the midlands I had a meeting with my surgery team. Mr Ghosh and lovely Lisa the breast care nurse gave me thumbs up for general well being and golden star status for being such a prime example of awesome patientness. Everything was looking good and healing process was spot on. I wasn’t worried as I’m always very good in the healing process of “taking care of self”. Not that I do it very well all other time, but when told what to do by doctors I am pretty good at following orders.
Today is my first radiotherapy. I’m not sure what to expect. The most people have told me is that I might get tired. Not as tired as the chemo… But as it’s an aqumilating tiredness and I’ll get radiotherapy every day of the week I will soon tell you what I feel.
All the roads and trains seam to be at a real mayhem today. Too many people wanting to go to the same place. At this time it’s London calling.
I feel a little bit sorry that I haven’t managed to see Oni the Okapi yet. But as I haven’t been up even once she might not know that I’m back in the UK… Oh who am I kidding? She is a magical okapi creature, she knows.
Keep smiling 🙂 life is for living! Okapis are for mystery!    

 Canora and Julie Andrews    

 Dream team: Mr Ghosh and Lisa and me

 Millie and me at TT Sa Calobra

London by feet

I’m not allowed to do any excersise yet, other than walking. So ok I take said challenge by taking said bull by its horns and I walk. 

Yesterday it all added up to over 10km! And London is fun to walk in. You don’t quite realize it before you walk but everything is so close by! 

The first few days of London was given mostly for hospital appointments. Oncologists, breast care nurses, herceptin injections and surgeons are all on the agenda. The only new thing was the CT scan I had yesterday for my radiation therapy that starts on Thursday. The CT scan will show where I should have my radiation rays so not to burn my ribs/skin/kidneys/other internal thingies. To get the machine totally correct they made two tattoos that marked the exact points for the radiation rays to line up perfect every time. I had hoped to brag about my 2 new tats, but unfortunately that would be rather lame as they are the size of a pinprick. 

You will have to wait until I undergo my nipple tat! That’s going to take a few sessions to “make” and a use of color and shades to make it look real. 

My niece has just started uni in London so whilst she is looking for living accommodation of the student variety she and I are flat mates! So lovely to have someone here for the month that I’m here! 

Today after the last appointment with my surgeon I take the train up to Birmingham. Tomorrow my wonderful 7 year old “The Drawness” is jumping at The Horse of the Year show at the NEC! It’s so nice HOYS still being held in my old manor, so it’s doubly nice to go and be able to meet up with friends too.

Keep smiling 🙂 The wonderful world we live in is more magical than you think. 

 

3 years ago

Three years ago today I had a terrifying accident that left me in a coma for a month. Afterwards I got back walking/talking and finally riding! This year was supposed to be my comebackto show jump again but then I found out about the cancer and most of this year has been devoted in to tackling it. 

Tomorrow I am going to the UK for my final month of radiation therapy. If I come out glowing in the dark afterwards you now know why! I’ll be staying in London for most of my treatment but as the Horse of the Year show starts on Wednesday and my lovely horse The Drawness is in it I’ll come up to the midlands for a couple of nights.
Today my husband hosted the Sa Calobra Time Trial! A 10 km uphill race where a cyclist gets started every 30 second from the bottom of “Sa Calobra”. The iconic hairpins road in the tramuntanas couldn’t be more enjoyable! What a wonderful event and as we were raising money for two cancer charities I hope we managed well! All riders finished and no serious accidents along the road!

The last 3 years has taught me so many things. Firstly how strong my family is! How much love and care there is in this family that I am so lucky to be part of! To each and every one of my extended family thank you! Your endless support has been a gift! 

Secondly: I’ve found out how strong I can be. I continue getting tried time after other, but soon I’m sure they will find someone new to test. They should get bored harassing one little female that takes no notice!

Thirdly: the power of my horses and the bond I have with them that heels me so quickly. Horse power is real power! Swedish select horse auction is being held at Flyinge today! 32 marvelous 3 year old, mostly Swedish bred horses and some very talented!

Finally I have to thank my husband. Without you I would never have discovered Watford football club! I know being part of my life can sometimes be trying but if at the end of the day we can keep laughing and smiling it is all worth it!

Keep smiling 🙂 who knows what the next 3 years will have to offer?