One step forward 315 back…

My journey of this chemo hell has taken another twist. 

My last post told you guys I had managed to man up on day 4 after chemo and gone for walks. Sadly this zapped all my energy on the following 2 days so I spent day 5 and 6 on the sofa or in bed. Even just walking upstairs or to the gate at the bottom of our garden raised my heart rate to levels of extreme exercise. On day 5 I even had problems speaking so being around me made no sense.

On day 7 my mind and speech had come back even though my body was still very zonked. I managed to go for a short walk again without the raised heart beat. I had some lovely visits and I could feel the world making sense again. It would just take a little time longer, I was already warned this might happen, just flow with it, let it take its time, tomorrow is a better day.

Waking up on day 8 which is today I believed that I had passed this new fore front of nasty tiredness. I was almost humming to myself as I cleared out our casita for our guests arriving on Friday. Dan got quite cross with me as I have the tendency of doing rather that pausing and thinking. I saw what needed to get done and sorted it as I’m still a believer in the “now” concept. Either do it now or it won’t get done.

It felt great! I felt great! Dan and I had said we were going to try yoga today and I was really up for it! We got to the yoga studio and I was wearing one of my headgear rather than the wig hair. It was a “normal” vinyasa class and I told the teacher before we started that I was in middle of treatment and him not to worry if I ended up in “child’s pose” most of the class. He said not to worry. Even as we warmed up for the class a classical cold feet and cold hands should have warned me of what was building up.

I managed to stay with the group for 20min or so. I only started using “child’s pose” when some quite complicated stretches had tried to tie me into a human knot. After 30min my whole body started to shut down. I was shaking and my heart rate was way up high. The teacher was following a “flow” style comparing natures natural flow in to form in to his class. The meaning I suppose was to realign now with the future in a seamless spectra. Because of the natural “flow” there were no built in pauses and as I am a woman of now I pretty much followed his guidance. The end was aligning itself with me. I broke down mid class. In my fancy headgear. I couldn’t even bend my legs to get into child’s pose. I instead did a full on “lie-straight-on-your-back-and-close-your-eyes-whilst-crying-silently” pose. Tears were flowing down my face and made a small puddle on my yoga mat. Dan came over to me and he managed to get me up and out of the yoga studio mid class. 

It broke me. I know it’s just “early days” and “I will feel better soon”, bollocks to all that. I am a broken soul now. I never cry. And as I write this I am on my sofa tears running down my face. Somehow this broke me.

I’m not sure of why. I’ve been here before. I’ve had worse things happening to me, the coma, the broken limbs, the one year that I have completely forgotten about, none of that has come close to this. Now I feel broken. And as I should feel better tomorrow it makes no sense to feel so bad. I can feel my positivity almost leaving my body. I don’t really even know how to finish this blog. What is there to smile about? You have to though. You have to look forward, beyond tomorrow, far away up ahead. The “goalist” in me will have to take a new aim. 2017! Or 2020! Great years to come!!! I will try yoga again tomorrow but with a routine and a teacher I know! I will get better, there is no other way.

Keep smiling 🙂 how else can you show off your dentists good work?!!!!

After 3d chemo

I am back at home! And I’m feeling better than I have previously done on my chemo 4 days after treatment! I have given myself quite a rigorous training schedule. Well that has involved inviting friends and family to cohearce me out for little walks. 

The sickness seems to have been pretty cured by the new meds! The tiredness is still here. So severe that all I can do is fall asleep but at the same time this is just helpful as I just sleep until I wake up. I don’t think I’m that much fun to be around but I’m gradually killing the small bastards Brenda, Brittany and Nina! On my last appointment to the doctor before my last chemo, she told me that the tumors had already shrunk a lot!!! My MRI to confirm exact size of tumors is not until June but she knows where they are supposed to be and the size they used to be so I’m just carefully optimistic the poisoning of my little “free riders” is going splendidly.

At my short visit in London I was met by my horsey friends from Warwickshire. They were bringers of gifts! I now have 2 new head gears! Sour anti queasyness tablets! And bringers of energy and positive thinking that can’t be denied. Thank you so much for making the journey! 

Now back on the sofa but with combination of small episodes of exercise mostly wearing one of my new headgear and queasing queasiness with the delicious anti-queasiness tablets! 

Today my fellow walkers were 5. My 3 daughters as well as our 2 dogs. One of the dogs Jack hasn’t been feeling well the last couple of days so he was the only quitter on our walk. Thankfully he decided that walking the last 500 meters was more appealing than being carried home so now he is asleep next to sofa and me. I’m trying to get out twice a day the first few days but it’s just my heart rate goes up real high if I go upstairs or if it’s hilly. 

Tomorrow I am going to try and go out for lunch somewhere. It’s always nice to plan and look forward to something.

Keep smiling 🙂 our every day achievements are remarkable!

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!