About WGEmelie

Professional show jumper, mother of 3 girls, survivor of TBI October 2012 now fighting cancer since 2015. Living in Mallorca, Spain.

Going back for 3d chemo

I’ve had you all waiting for an update on my weird and wonderful life as a baldie.

I look naturally badass now so I’m just surprised no acting roles have been offered to me just walking around… We’ll probably because I take to wear a headgear of some kind when I leave the house. I look like a 50’s housewife in my hair/wig and like a sheik of some kind in my “turban”.

The last week in the chemo cycle is the best one from an energy point of view. The only sad part is that I get even more aware of how bad I get with the chemo as I feel almost back to normal. I know that after the chemo on Tuesday I’ll have 1 day where I feel a little sick and tired but still possible to do things, after that I have 3 days of complete nasty nothingness… And after that a wait until I can think again. I even speak slower. I look for my words. When I’m back on a horse first time I am totally twinsided. The left and right are not even half related. I have the strangest shakes on my left side which I don’t know is related to my old “misdiagnosis” of Parkinsonism. Gosh so much to consider and think about. Luckily I have 3 little girls that are helping me to think of other things so I don’t fill my existence of gloomy weariness. Last night they helped me not to sleep a lot as they take turnes in coming in to my bedroom. The 3am visit of smallest beauty Millie was last nights least favorite. After changing her PJ bottoms after a small accident, she point blank refused to put the new ones on as she couldn’t see the color of them. (As this very scenario had happened a couple of weeks ago I kept lighting in room at a minimal.) I ended up swearing at the small 3 year old and threatening her with sleeping outdoors. Her or me, one had to go. At 5am she decided to go back to her own bed! And she stayed there! At 6am my middle one Mel decided to join me and only to complete the circle 8 year old Myrna came in to the bedroom at 6.45am. Today I am tired, but for a reason! 

I’m constantly reminded of how truly blessed we are with family and friends helping us as much as they can. It’s hard for anyone to help or even be around when I’m really bad, but when I’m on the homerun on the 3d week after chemo and the energy to meet up with people as well as exercise (well a little) and find myself totally booked up! I’ve been to more social events of lunches and meeting up with friends this week than I have in the last 3 months! I’m still not really daring dinners away, but maybe next time.

Keep Smiling 🙂 the Mimosa is in full bloom and summer is on its way! 

 

Computer failure, printer blockage and car battery dead.

See most of you would go insane with the many little annoying every day problems that has brightened my afternoon today! But here is the odd thing, I appreciate being able to tackle the every day annoying things! I appreciate that I am still up, awake and not falling apart or asleep! Ok for the Swedish speakers in my proximity during the beginning of the afternoon there might not have been a lot of appreciation noises… The swear words were hammered quite deliberate/frequent and hard over my uncooperative computer and his nerdy printer pal. None of them wanted to work.

I have the first quarter of the years accounts to do so I am a little dependant of stupid computer and nerdy printer… There are 2 companies that I have to sort out accounts for. Slowly but surely this is being done now. By high jacking my laptop and rewiring the printer. It didn’t like it much, but it works! Sadly I can’t sit and work where my laptop is as there just isn’t any room, but it shall work and printing has begun! 

As with this chemo palaver it’s coming up to almost 2 weeks since I had my last dose and I feel ok again. Well at least energy wise. I haven’t been as nauseated as last time thanks to some brilliant medicines! The only problem with that was because I had felt so very little nauseated I didn’t even think about taking my tablets after the week had gone and I was beginning to feel ok. This resulted in some rapidly exiting vicious green vomit, projectile style. It was the lively green color because of the wheet grass I keep drinking. But strangly enough, even though I thought I would keep vomiting through out the rest of the day some other new anti sickness drugs were taken and worked instantly! Relief! 

I have finished the 7 injections of white blood cell improving stuff… I now have started to get sore joints again. I’m not sure when I should go and test my blood again, maybe tomorrow? Dan has reminded me of how I was last time round…

I can only remember how hard it was to get those extra injections last time. I will get my knuckle busters ready for a bit of a fight tomorrow… Now all the little ones have gone to bed except for the smallest one. She is apparently waiting for her daddy to play with her… Hm, I’m not so sure that’s what he promised her. What rhymes with play? Stay, slay, sway, lay… That’s probably it! -“you stay here and daddy will come and lay down with you!” She must have heard “daddy will play with you”…

Still awake. And I’m so happy everydays small  annoyances are here for me to feel at home! Even the car won’t start! It’s not even a small clicky sound when you try to turn the key over. It’s stone cold dead! Tomorrow I will try to start it!

Keep smiling 🙂 some times you just need a kickstart to get going in the right direction!

How much harder?

I’ve now had the 2d chemo 1 week ago. There is 1 week until Myrnas 8th birthday.

A lot of numbers. Trying to keep it up, constantly failing. It doesn’t matter if it’s a place I have put a key or something important. A bill that’s got to get paid. A meeting with someone. They all go. Disappear into distance as my tired vacuum of amnesia straps his cold fingers around my brain, slowly squeezing out any previous knowledge. 

I am truly frightened. This shouldn’t be happening. I should get tired, yes and apparently more so with every chemo I have, but Alzheimer? I honestly don’t know what to think. 

I came back to Mallorca on Wednesday, I managed to drive a car then and Thursday-Friday I went out for walks. Saturday (day 4 after chemo) I was in bed for the whole day. Sunday I managed 2 walks and also did a lot of sleeping. My lovely extra mini-me sister is here now, Jenny. She is riding and jumping my horses. Yesterday was the first day we managed to get up to the stable and she rode all 3. After the 2 hours in the stable I was done for. Totally whacked. It was like somebody had turned all my energy taps on and bled me dry.

I would like to tell you all that I become a lovely person when I’m tired/forgetful… Nothing could be further from the truth. I become a nasty/wengeful/angry/aggressive with absolutely no fuse. I am pure dynamite. In every bad unforseeable way. I just erupt like some vulcano, falling apart simultaneously. As little energy as I have I can hardly hop upstairs but boy can I lay into my family if they step out of line one millimeter.

There is no point in being regretful. I am sorry for losing it with them, but simultaneously I feel too tired to sort it out. I’m sure I feel it more than anyone else in my family, but i’st still not easy.

Today I feel a little bit better again. It’s only such small improvements that I in any other time would ignore them. If this gradual decline chemo by chemo promises goes at this rate I will be ready to put in a casket by august.

I’ve been told today that I always paint the worst possible case scenario. I can’t believe anyone would ever say that. I normally fish even the tiniest positive out of this sea of black tar ahead. I wasn’t allowed to bring everyone down by telling my dark unsettled self, bearing my darkness. I don’t often do. It’s only sometimes I let go and feel weighted, almost drowning, surely there must be a way out. Something to look forward to? 

In 2015 I don’t think there are that many light points. I feel so sorry for my children. They will remember my illness as a part of me. It couldn’t be further from who I naturally am. I am forever goal driven. And to put a goal driven person through this anti-goal challenge it’s like killing them. Proposefully, slicing me open,  one piece after the other. Dignity- gone, pride- gone, sanity- gone.

The horses jumped alright today. And hopefully by the end of the week I can ride again. Next week it is Myrnas birthday and if it follows the almost pattern of last time I had enough energy to be almost me. The only problem is that following that week comes chemo nr 3….

Behind enemy lines. Inside my own skin.

Keep smiling 🙂 it can’t hurt! If the Altzheimer is for real it won’t really matter soon anyway.

Home after 2d chemo

It’s been a few days at home. Following the last chemo, this time is much better! I’m not feeling as nauseous as last time. I have 3 new anti sickness drugs and they seem to work out really well.Edit

The hair of my head has all come off now. Well almost, I still shred enormous amounts of little hairs found in bed/bath/shower, but it’s probably just for this week. Luckily I have a good head for it! It could have been so much worse. But first thing in the morning I’m always up before anyone else and after taking dogs out for their morning wee wees. Afterwards I’m updating myself on the worlds horrible news over the TV. I’m not sure why there are so many bad things reported in the world. Is it purely because of the ease of reporting it with phones working as camera/video/reporter? I’m possibly quite sure bad news is not a good recover plan. I think I should probably avoid watching bad news.

This has taken a full 2 days to write. And today being Saturday of Easter. Normally celebrated with feasts of candy, eating of eggs, and normally the finish of any lent. It’s the first day I feel really poorly after chemo. I had a wonderful 8 hour sleep last night! But rather than feeling the morning buzz I just felt like getting back to bed. The nausea is back with a vengeance. I went down to watch some news and was greeted by my old pal Karl Ude-Martinez presenting polo on segways. He didn’t really sell the concept to me, but it might be another way to play? The falling of a Segway on Tarmac only covered with thin green plastic grass/felt doesn’t really appeal. But with the change of bad news to the cheery world of Segway polo has cheered me up!

Today is a day of visits! Especially warm welcome to Jenny Andersson! A top WGEhorses rider! A family member non the less. I hope energy will return a little so we can go and play horses one of the Jenny days!

A very happy Easter to everyone!

Keep Smiling 🙂 the hornets(Watford) made a fab recovery playing Derby yesterday for a 2-2 draw, and yellow is still a favorite color!

3am after 2d cycle

Just to clarify its not the cycle you can ride on. Second cycle of poison went in to my veins yesterday. The portacath was used incident free! Bloods were at an acceptable level and all went well! The treatment didn’t happen until 2.30pm so I wasn’t finished until 6.30pm. It steals time for you this malakey. 

My mum has yet again been my chaperon this time staying in the flat in Maidavale. As we both suffer from insomnia and basically stay very still when we are in bed we could stay in the same bed.  Yesterday it was fine. Tonight it has been fine until 3am, then nausea hit me. The problem with nausea when you lie down is that it’s like a wave. It rolls over you. So now I’ve left the lying down in bed position, taken my first of many anti sickness drugs and sat myself on the sofa covered with a duvet. I am thinking about pitying myself, but I’ve come to the conclusion that it would probably impare on my otherwise positive energy.

Yesterday I think I met the so far favorite on my “team”, the nutritionist! She was called Kelly and was really good and honest on so many levels. She took all the advise I have been given and discussed what part of the advise was in fact proved to be good and what part could be harmful and why. According to her you shouldn’t compleatly cut out sugar. As the tumors use 10mg of glucose/day and the body by it self can produce 15mg glucose by stealing (borrowing) from healthy tissue or the liver. So fruit are back on! But only whole fruit, raw not cooked. And not all fruit. I have a list of how much I can eat. Meat is also ok. The hemoglobin levels are helped by red meat but only 1-2 times per week. Fatty fish is on and supposedly up 3-4 times per week. It’s the omega 3 that we are after and she told me omega 3 has 2 parts to it. One that is called EPA that is available in plants and some seeds (chia) and DHA which only comes in oily fish. It comes in higher doses in fish that’s not white and small fishes that are really fishy are good for you. Just writing about this has made me have an acid reflux. The honesty part was first about the hairloss, she hadn’t spotted I was wearing a wig so that was great, but she was almost as blunt as the Spanish oncologist about the hair going to fall out. As I already have gone through that part of it I’m not too worried about it but the second part was weight gain! Oh come on! Is there not a less glamorous disease I could have been hit by? I get poisoned, feel sick, have my breasts cut in to and died blue, loose my hair AND gain weight! So unfair! The year 2015 was supposed to be the year to start jumping again. I had big plans to get back on my bike, even riding a bike to the stable some days. The 2015 bikini body was going to challenge the 2012 body I had before the accident (I wanted to put the 2006 bikini body because I have photographic evidence, but it was before 3 children and almost a decade ago so just not fair…)

Today, although in normal waking hours not this wolf time, I am going to see the surgeon that operated on my eye a month ago. I will have all the tests to see if he managed to correct the eye as much as he liked. Hopefully he will be happy. It feels fine. When I get tired on the chemo I’m never really up to challenge it, but it’s not double in the same way it used to be. We will see, update next time.

Keep smiling 🙂 the world keeps turning and somewhere it’s Gin O’clock! 

  

Crew cut

We have done it! As a unity of the family some people share a meal, go to the cinema, go to the beach well we started a new team bonding of shaving mummy’s hair. My scalp had started to be a bit prickly painful and a lot of hair just fell out of its own accord or when you briefly just touched it. 

The decision was made. The clippers were to be used. As I was traveling to London today I didn’t want to keep shredding hair and bits of my funky style everywhere I went, ending up looking like one of the abandoned dogs in a rescue centre. The crew cut was going to become my new for now style.

I started taking a bit of the sides off. Holding my breath as I still wasn’t sure about my head shape. Mel was having a bath and she asked if she could help so I said yes! Dan also came in to help with the back of my head and to tidy up loose ends. Myrna finished the crown off and made sure no strangly bits were to be seen. I was sitting down on the bathroom floor at the time so I hadn’t seen how I looked. 

I stood up a little apprehensive to what I was going to see in the mirror but low and behold! I have a great head! It’s more or less the perfect shape! I don’t look stupid at all! I have known for some time I have a good hat head, but for me also to “pull off” the no-hair-head is fantastic news!

I can breathe a sigh of relief. Now I still have a couple of millimeters hair on my head but as the days go on I keep shredding the short hairs so soon I’ll be I think totally hairless. The prickly pain is still there a little bit, but not as much as yesterday and as I’ve today started wearing my wig as I’m travelling to the big smoke for my chemo tomorrow. It’s a great time to get used to the wig as it’s not as hot here as Mallorca.

I’ve heard you shouldn’t flash your bare scalp to the sun, otherwise I think as soon as the prickly painful sensation was to disappear I could grin and “bare” it, (that’s the scalp) but equally I don’t like people that I don’t know to wonder whats wrong with me when they meet me. I had this wig fitted when I was in London last and it fits really well. Looks like my own hair, only this is better! There really is no time needed to fix the style of it! I might wear it to the hairdresser to cut a fringe in it… We will have to see.

Keep smiling 🙂 under that head of hair there might be a magnificent head shape! Not an Avatarian/Kompany in sight!

  

Final week of chemo “cycle”

I normally love a sport. Any sport except possibly rugby but this chemo palaver even though they call it a “cycle”, it’s pretty hard core and you feel yourself exhausted after going through it… I could classify it as a sport but in reality it’s anything but.

I’m in my 3d week after my 1st cycle (not the type you can take for a ride). My energy levels are acceptably high. Almost back to where I was before all the cancer. Remembering I wasn’t really top energetic before it all hence I had the eye operation.

It’s funny. Whenever I speak about my ailments to somebody new. Introducing them to the coma, TBI, paralyzed left hand side, learning to walk again, starting to ride, wrongly diagnosed parkinsonism, falling off and breaking my knee and elbow, then having a year of on off tiredness and double vision, followed by this latest breast cancer in the midst of sorting out my double vision… I even get tired listing it all up. I can understand people get tired listening to it. It’s unbelievable in a way. Hard to compare really.

I’ve been told I’m too blasé about telling people about my illness. That I shock people in the way I’m telling them I have cancer. I think part of me basically think that everybody knows (I guess from living on a small island) the second part of me is probably not really sensitive enough. I was trying to explain how I’m not really a sensitive person but I also don’t think I am cold at all. Only my temper messing with my award for mother of the month. It’s unfortunately quite sharp.

Everybody’s lives are different and we result in reacting to things happening in very different ways. The problem is when you don’t half recognize yourself in acts you do. I try and slow down, step away, breathe. I have managed to control my temper twice! 

At the moment I try and stay positive. My hair has started to fall out rapidly. It’s not big clumps yet but there is a lot of hair that falls out whenever I touch my hair. I wonder when I will take to the clippers? At least a no 2 (isn’t that a slang for a military haircut?) wouldn’t block my drain plug or make mess on my pillow. I’m not sure as to when to do it. Possibly when I go to England on Monday. We will see.

Diet: Doing well! 5 days without any sugar! Those little tumors can starve! Bye bye Brenda, Brittany and Nina!

Keep Smiling 🙂 there are vegetables you have never heard of, and some are super yummy!

Riding again 

It’s been a long 3 weeks but finally I have managed to get back on a horse! I know it’s not everyone’s first thought of healthy re-hab but for me it’s the number 1 thing getting back to any kind of “normality”.

On a separate point I should just also mention that I have done pilates and yoga as well this week so I am getting a bit more back to active me! The first time I did pilates I couldn’t do anything afterwards. It was compleatly energy zapping. The day after I felt fine. The yoga I did was a “normal” vinyasa class. With headstands and series of planks. Of course I didn’t manage to do all of the movements but I managed 80% more of less. And as my muscles ached the day after I must have done something right!

The weather in Mallorca has not been too kind. Lots of rain which I am sure the flowers love, but unfortunately for us the arenas where we ride is something more like lakes. 

Yesterday I managed to borrow my old champion horse Lara that has been sold to a young rider at my stables. The arenas were not working with us so I just rode around the parking and hacking on the roads around the farm.

Today was a little bit better with at least no more rain during the morning. I managed to properly work Imze along the outside of our big arena. It’s funny, 3 weeks of a horse really can take it out of you. I really feel there is a big challenge for the body to adopt. It probably is partly the chemo so I won’t divulge to far into feeling sorry for my self. Chemo, however lethal it is, is being used on me to try and kill the cancer and cure me. Simpels…

Today we also had a meeting with the founder of Ziva Raw food, Petra. She went through what is healthy to eat and what to avoid. Basically her opening sentence was -“No fruit is allowed, too much fructose” and onwards and upwards from there… -“You should try a detox”.

Well a detox involves 7-10 days only drinking special green smooties. It gives you a lot of energy and cleans your body from the inside. I’m sure it’s a fantastic way of cleansing your self and improving your immune system, but I’m not sure starting it whilst having chemo is the way forward. We will see.

A package arrived in the mail today. My wonderful cousin Cecilia had baked some ginger soaked macaroons, one was ginger with a filling of salted caramel, the other one was chocolate with a white chocolate abc ginger filling! Thankfully they arrived before our meeting with the Raw food guru so we had an almost guilt free sample! They were out of this world and as I’m having my next chemo next week I am going to try and save them for my “after chemo” treat! Ginger was good last time!

Keep smiling 🙂 not nauseous, riding, active! My life is almost normal!!! 

 

My husband My Hero 

It’s all been sorted! I didn’t want to keep you in a limbo fearing for my safety! I am married to my own personal super hero! He managed to fight the system and together with inside help from the hospital we managed to get my immunesystem booster!

I’ve been doing some digging as well as being plentiful informed of the nature of said booster. I know why they are resistant to giving it in Sweden (cost) but I cannot understand why they fight it here in Spain as we pay for it anyway… But it could maybe be side effects? (Sore muscles and bones) Or that you can only get it through hospital (fear of giving away things you can inject yourself with?)

Now I’ve met my Spanish oncologist and he seams a nice guy. He will in reality only do the “post treatment” of radiation and herceptin after my operation in September if it all goes to plan but it’s good that all of my information of ongoing treatments will be on a file system in Mallorca. He was very honest and a little bit blunt partly because of his English and partly because of being Spanish. He said “-you know with this treatment you are going to lose your hair” -Ah well, yes, there is an 80% chance of me losing my hair but I might belong to the spare 20%? “-No, no in 2 weeks after your first chemo it will be all gone!” Ok that’s settled then.

My biggest or shall I say only worry is the shape of my head. What if I have a really weird shape? The Man City football player Vincent Kompany comes into my mind. Very unfortunate shape. The shape of ones head gives connotations to other people’s appreciation of your intellect/sassiness/style. I am preparing myself as the shape of my head will maybe change the way of how I see myself?

Luckily a lot of sport happens around us right now. One of the finest things happened! The golden hornets are top of the leauge. Come on Watford! 

Keep Smiling 🙂 the shape of your head might surprise you!





Joint pain

Here comes a chapter about day 8 after chemo. I’ve been very good at grading pain and nausea over the past week. I’ve done a chart with medicines contra pain/nausea relief.

On Monday I finished my antibiotics I was on after the chemo. I then also stopped taking the pain killers I had been on since last week. The nausea slowly got less and yesterday finished for real! Food still taste weird/unusual and energy levels have been a bit low but I could feel everything going in the right direction!

Then I woke up this morning. A small child climbed into my bed for a morning cuddle and all I could feel was pain. Aching from the bottom of my pelvis spiraling down my limbs and radiating through every joint in my body. I couldn’t lie down. I tried sitting up and then the pain twin-folded. Only standing up either slightly leaning forward or walking in a small circle could ease the worst of the pain. It was seriously scary. As at the same time I tried to read the macmillans website about possible side effects to chemo, but I couldn’t find it. After an hour of crying/swearing/shivering and mostly standing, I decided to restart the painkillers I still had. When you started them you always started with a double dose.

After another hour I was almost pain-free! I got hold of some people in the UK that said that I needed to do a blood sample today to see where my whiteblood cell count and immune system was. They said that joint pain could be a side effect of the chemo or the immune boost injection I had a week ago.

I went to my local hospital to do the blood test. They were then supposed to fax the results back to LOC in London. Me and Dan then managed to squeeze in a lunch at lovely Perrito cafe in Santa Catalina. I felt almost normal planning this summers holidays, well as normal as you can planning it between bursts of chemotherapy.

Then my phone called. It was a doctor from the LOC. They had my values back from the blood sample. Not a white blood cell count to be proud of. Nearly “null” immune system, I was ordered to stay away from sick people (more than before) and to get 3 more immune boosting injections (so my joints can get a little more sore!). Well I give you a mission to try and get any Spanish doctor to agree giving the immune boosting injections to someone who isn’t already properly ill. Good luck with that. Maybe add that the patient has a low immunesystem before chemo and after her TBI some 2 1/2 years ago gets severely infected when she does catch something. My husband and I have called every possibility, every long line of friends on the island to try and get hold of the injections. (The only thing I haven’t tried is my vet) The LOC has called us another 3 times to hear about how we are getting on getting the injections. In the end they decided to put me on antibiotics again. So for my safety I am again eating another 5 days antibiotics. I feel ok so far, my youngest daughter Millie is a little more tired than usual and as I have to be so careful we are taking her temperature about once an hour. She has been told she is not allowed to sit in my lap which makes me irresistible to her! Forbidden fruit! 

But that has also been a theme throughout the day, people saying that fruit is bad for cancer patients. That you need to starve off sugar and that includes fruit sugar to become cancer free. They then say all you can eat are green vegetables as they are the only thing you can eat not feeding your cancer… At the moment it’s all a bit too much to take in, and I also went past the Swedish food shop in Santa Catalina finding a few favorites like Kex chocolate/ dammsugare (greenies) and some liqorish chocholate. They made their way into my handbag and now back in my house! I will go through my diet properly tomorrow when there is more time to think.

Keep smiling 🙂 all of a sudden your diet will make sense! Until then be happy over the senseless beauty of Swedish treats!