Day 4 no kidding

I am about to break a promise made to my mother a couple of months ago.

I promised her never to write about the hard stuff, the weighty stuff, the teary hateful stuff that surrounds me at times. I’m sorry but day 4 after chemo leaves me without any other outcome, I have a need to tell you about it.

It actually started a bit earlier than expected. Last night I was in my comatose deadness. Dark veil surrounding me, forcing me to lie down and sleep. I could hear the Mosquitos feasting on my chemo riddled body, but I couldn’t do anything to make them go away. Mind over matter doesn’t work that way unfortunately. So from a great day 3 after chemo to the no so great evening of day 3 after chemo to the nasty day 4 after chemo.

I woke up upstairs. Strange. Can’t even remember getting upstairs. Walking and stairs is not a combo often done on day 3/4 after chemo. The tiredness surrounding me is total. I don’t know what to compare it to because it’s totally filling me. There is no way of shaking it off. After 12 hours asleep I can still not even talk properly. 

I manage to get down to sofa. Here I park myself. Husband brings me water and I have anti sickness treats. And my lovely feast of potassium K. Luckily some of the other drugs that I take makes sure I won’t puke all over sofa or loving husband.

After some updates on world news from the BBC, I realize the world is still going to hell at an alarming rate as over 38 people have been shot dead in Tunisia on the beach. Also the highest rated movie of the week is “Minions”, apparently it’s full of humor and slap stick… If one is not a fan of slap stick one probably should leave it alone…

I managed to make my way down to the kitchen and made some tea. It’s unbelievable how hard it all is for me. Now I’ve run out of things to write because I’m too tired.

😬

Keep smiling ๐Ÿ™‚ one day more and you might feel something again.

The waiting game

We are now waiting for this weekend to be done. As today is chemo +3days I know from previous experience tomorrow is my worst day. I have had a fairly good time so far, my potassium levels have been really low so I’m now on new supplements for “K” (chemical letter for potassium). For anyone who has ever had the pleasure of taking K as a supplement in water rather than IV knows this is possibly the worst tasting supplement ever. I can’t really compare it to anything, but puke is fairly close. So not great as a twice a day reminder that you should feel sick… Well I do right now.

I have managed to keep up walking a little and doing some housework related stuff, a little bit of washing/tidying/cleaning and making pots of tea. It’s all part of the waiting game. I’m really trying not to over-do things as the cost tomorrow and the day after is too high. 

Yesterday I managed to do the walk to see our neighbors donkey foal. Stunning black beauty! Oh the heat was something different. I did not get out until 11.30 but it was already in the 28ish degrees and over 30 when I finished the walk…

On another note my horses are jumping really well in Hickstead show and The Drawness finished 3d in yesterday’s final in the main ring!

Today I am aiming to go to the stable. My friend and her daughter are coming to ride some ponies/horses so they will pick me up and take me over there. 

Now back to enjoying my first pot of tea for the day, today’s beginner tea is the Kushmi Boost, let’s hope it can energize! Let’s hope it tastes great too… Need other flavor in mouth than the rather disgusting taste of K.

Have a great day! Next week we are promised 38 degrees here which will heat up the rest of cool Europe…

Keep smiling ๐Ÿ™‚ Glastonbury starts rocking today, unfortunately forecast looks a little wet for some of UK this weekend!  

   

2 to go!

Just a short notice as I’ve completed number 6 chemo! It’s been very painfree this time. Only 5 hours in the hospital this time, and some of them spent with my wonderful friend Sarah! 

First I had a meeting with Dr Jones. Her words to my husband Dan was something along the lines of -She is doing brilliant! (About my ability to adopt and have a good mood through this time) To my daughter -If I had a gold star I would give it to your mum (as well as pointing out I am top of her class at this moment).

So despite my purple nails that apparently might get worse and also maybe fall out, I’m on the right track! Brenda is almost a gonner! She was the biggest of my 3 tumors so that’s great news! The tiredness is to be expected apparently… Lots of maybes and hopes, but on the right track so far!

Dan has been setting up this time trial event up Sa Calobra in Mallorca during October 3d. All profits of the event will be given to 2 cancer charities! It’s such a heart warming thought and I do believe the event should be a fantastic experience for everybody! Check it out www.ttsacalobra.com!

We are looking for more female professional cyclists, so if you know anyone please get in contact with us!

Tomorrow my baby daughter turns 4 and I feel quite old myself! Not in a bad way, just a fact of life. Time goes by. You live some you learn some. Hopefully you learn some…

My hair has started growing back! The doctor say it might fall out again during new chemo, so not for me to get my hopes up too high. 

 Keep smiling ๐Ÿ™‚ sometimes lifes biggest battles makes us stronger and more determined!

Creative thinking sparkling mind- Body not cooperatingย 

We are here yet again. The day before I travel back to London for my next chemo treatment. Time seems to have flown by this time. Mostly because of my newfound love for Game of Thrones! What a masterpiece of storytelling! I was hooked from the last scene in the first episode. The way how the writers lure you in with their false sense of security and basically rip your heart out when they allow you to start sympatize with someone only to kill them off… Pure story brilliance! 

My life after chemo 5, aka first of four of the new kind of chemo, has been a roller coaster of emotions. My mind is clear. I can have proper conversations with people and realize my memory is getting a little better but my tiredness seems to get worse. Physical tiredness that is. My mind is still awake/ problem solving/ deciding what needs to get done, then the body just switches off. It’s gone past annoying, it now is infuriating. If you have met the slightly annoyed me you know that you should, quite rightly so, fear the furious me. Luckily for the people I live with I get too tired to do anything through my fury, instead I fall asleep on the sofa. Better for everybody. Except maybe for my mind…

It’s what I’ve feared most intensely since my first injury. To have this bright, sparkling mind locked inside this slow moving not clearly responding body. Stephen Hawkin’s problem, ah well more or less.

This time my youngest daughter will come with me to London. With the summer holidays here we have an exact schedule until the end of August. I know exactly where I am every day from today until the 30/8. It’s quite a revelation being this well planned. I have only one worry. The heat. As Dan pointed out to me today, -You might be this tired because of the heat. Ah well, I bloody well hope not. It’s not even that hot yet. Today only 28-29 degrees. Here in the summer it can easily get over 35 degrees… I might have to rethink my very planned summer if that’s the case.

I must raise a glass and congratulate the WGE team with the horses that this week have won so much! Ayrton won 2 classes at The Royal Highland show, the A&B stakes and the Grand Prix and wonderful The Drawness won the 7 year old Talent Seeker class with 80 entries! He and  Julie have now qualified HOYS! (Horse of the Year Show) It’s the second week of October so I’ll have to make sure I’ve had the operation and haven’t started my radiation therapy by then.

Keep Smiling ๐Ÿ™‚ according to Annie you are not fully dressed without one!

Meditation at the monestaryย 

Yesterday was a bright day, and sunny, today a slightly “cooler” day with clouds and thunderstorm! A tiny bit of rain but still some rain… According to my mum the streets close to her house needs the rain as it smells of dog wee…

I am back riding! Properly this time. The toenails are properly blue/purple, a little bit sore but not too bad. I think the right big toenail is a gonner as its turning a real dark purple color. I’m not sure why this is happening but hopefully it will not incur more pain.

The riding yesterday was a full 6days earlier than I coped with riding after the previous chemo. This chemo does really keep my mind brighter and that seems to keep my body more energized as well. 

After riding yesterday I went to have my bloods taken. They do that to see how your blood counts fair after the new type of chemo. All my values were low but within acceptable grades. I was worried I had to have more immune strengthening injections but apparently not! After the blood samples I went with a friend to a monestary in Palma.

I am not trying to find God, I’m pretty sure I know where he is (or she if you are that way inclined), or otherwise I’ve been given a book by our stand in cleaner who is a Jehowas witness and she left me this book yesterday…

Me and my spiritual guide Linda went to the nunnery Santa Clara’s courtyard where we braved the shadows for an hour long outdoors meditation. I meditated naked. That is my scalp was naked as the heat of wearing any headgear outside makes me sweat. In the quiet calm of the monestary courtyard we found energy and strength. I wished for my blue nails to cure without losing them, and there is still hope.

Keep smiling ๐Ÿ™‚ if you can’t find God, or you doubt there is one there are books that can help you find him! 

 

Bruised toenails, bright mind

Monday! It’s the start of a new week. Day 6 after my last chemo cycle start. Last time I was really zonked. Tired outside of recognition of self. Today not so much.

I started the day feeling good but sounding like I had a really bad flu. Everyone in the house seams to have some sort of sneezy cold/flu, so I’m staying well away from them all. Making people use the disinfectant fluid everywhere. 

The heat today was something else. Indoors it was fine. It’s just when I started my walk this morning I realized I’d started it a bit too late. I got to the gate at the bottom of my garden and came to an understanding that this walk really shouldn’t happen… Not if I wanted to stay alive, so I turned around and made my way back to the sofa. I had great plans for today I wanted to start being active. My mind is really clear. Not just fast pacing and active, but actually coherent and working. 

It wasn’t until after lunch I realized my bruised toenails. I had started getting some ulcers in my mouth so I think my white blood cell count is low, but the bright blue toenails got me wondering. I hadn’t read about bruised nail syndrome as a side effect of chemo but I don’t feel like it could be much other than that. I called the LOC to see what they would say about my blue nails. Quite quickly I was put in touch with an on-call doctor who did indeed say that the bruising under the nails was in fact a weird/unusual but documented side effect from the new chemo. Ah well phew! As long as no real pain was involved she said I didn’t have to worry about it.

So my blue nails and I waited until the day became evening and the temperature lessened. Out we went for an uptempo walk! I found my Bluetooth headphones and downloaded the newest Muse album, “Drones”. There was some jigging/dancing done as well as air-guitarring on the small country lanes of Establiments! 

We have had a new arrival in the household today as well! Another Watford fan! It’s our new au-pair/nanny Phoebe. It’s a real shame it’s summer here now… We have to wait until August to follow the golden hornets in the premiership!

Keep smiling ๐Ÿ™‚ beautiful beats and blue nails make a disco wherever you are! 

 

Day 4 what’s up?

This is the terrible day of 4th day after chemo. What’s new? Not much, still suffering a plenty, waiting for the day just to finish so I can get off this sofa stuck to my backside…

It’s strange how this whole energy draining thing works. I wake up with very little energy, then it just gets less… I guess everything else would be a blessing but I’m still not quite happy with the day 4 scenario. I had hoped day 4 under new regiment (aka new chemo) would open up new doors of lightness and energy! Not so much…

It’s been pretty good so far, if I’m honest and do compare to the other times. It’s possibly better than the times before because I’ve twice made it off the sofa this time, as well as managed to go for a mini stroll to our neighbours newborn donkey foal. I should be ecstatic but my mind will not travel to such far reach extremities of feelings. I’m just content, back on my sofa. 

Another strange thing that’s happened with the new chemo/new drugs is that I have a very temperamental stomach. It can go either way. When it plays up its no recommendation to be too far away from a loo. Luckily my sofa has less than a 10 step distance to the facilities… I really cannot wait for this to be over, to deal with it in past tense will be much more fun!

We have visitors from UK this weekend and our new right hand woman will arrive on Monday so keep fingers crossed!

Keep smiling ๐Ÿ™‚ sometimes the smallest steps gives the biggest results!

Back at home in one piece!

I’m now a survivor of 5 chemo therapy sessions! And as the last one was such a long one it really feels like an accomplicement! 

I know it was only long because of the 3 new drugs fed into my system have some quite disturbing/severe side effects if you don’t tolerate them, but if you are like me, obviously not in the slighted intimidated by new drugs, then you do just fine! I already had no hair, I’ve started to gain weight (more of me for you to love!), the possible depressions/eczema or other later on possible side effects I’ll just have to deal with at a later date, if it ain’t broke don’t fix it!

Regarding the tiredness. I think so far I have a more awake brain! I know it’s only been 2 days since chemo, but I have a much clearer sense of my self! Apparently yesterday as I had asked for wheelchair assistance in the airport, I turned into the charming invalid from The Little Britain series, my mother was my keeper so she was the long term sufferer… I don’t think I was that bad, but being almost driven into things/people/restaurants that I really didn’t want to go into, I had to protest! And on top of that driven by my fully accompliced wheel chair driver, mum, who is a Physio therapeut, although she hasn’t fully worked as one or wheeled any heavy uncoordinated airport wheelchairs for the past well 20 or so years…

Anyway it’s all well that ends well and both me and mum are safely back in land of Spain, soil of Mallorca. Her dogs have enjoyed a 4 day holiday in Establiments and Kofi especially have fallen in love with Millie who insists that Kofi is not her dog, -No mummy, Kofi belongs to “mormor” (Swedish for granny maternal). 

Tomorrow we have the arrival of farmor! (Swedish for granny paternal) so this starts our summer of fun! I know it might not seem fun having a summer fully booked with treatments and chemo and finishing up with operations and radiation, but I’ve never been as organized ever in my life since the kids came along! I know exactly where I am and almost what I’m doing for the whole summer/autumn! 

Regarding the boring hospital visits in London. Outcome, amazing! The MRI and Eccograph showed that the tumors had shrunk and that my heart was in PERFECT nick to cope with the new poisons! I read the report and there it only stated “normal”, but my oncologist said that my heart was perfect! I’ll take that! Any time for perfection I’m up for!

The later visit to my surgeon also provided some more information. I was sent off to see the doctor that had put the 3 markers in the 3 tumors to make sure they were shrinking as the MRI isn’t good to get measurements from. 

I did another ultrasound scan and low and behold, Nina, the notoriously naughty nipple hiding tumor was almost gone! Brenda, the fat strangely formed tumor had shrunk with a good 20%! And Brittany (basically the tail of Brenda) had also shrunk! Brenda now looks like a Scottish terrier, with the marker perfectly signing her off as her necklace, very strange! She has always been a strange shape but for her to change shape into a quite aggressive little hound has made me think, she probably is fearing for her life, understanding this is going to be the end of her! With only 3 more sessions in the “Dungeon of Death” and with this mental surplus compared to my last couple of chemos, well you never know today is only day 2 after all, but there is definitely a glimmer of hope for me! 

Keep smiling ๐Ÿ™‚ be inspired by the unknown! Don’t fear it!

 

Awaiting sleep in Marylebone

Counteracting “Sleepless in Seattle” with the new best seller “Moody mare in Maidavale”.

Mum and I arrived yesterday for today’s scans, contrast MRI’s and Ecograph of my heart.

I decided to stay at a hotel close to the LOC on Harley street as tomorrow will be a bit of a long day. The changing of the chemo makes the first time a looooong one. 8 hours in the Dungeon of Death and followed by appointment at 5.30pm with the surgeon… I will finish around 7pm… So much fun!

Tonight we had planned to go to the cinema. I really wanted to watch Mad Max on a big movie screen. That showed at 9.15pm. So instead I put my hopes on the new Simon Pegg movie. It showed on the great time of 6.30pm! Well I was almost asleep at 6.30, so there goes my movie visit this time… Maybe next time…

Even with today’s warm up drugs of steroids I am so sleepy. The sad thing is I don’t seem to be able to fall asleep. So maybe the steroids are to blame? I haven’t got bigger muscles just bigger stomach. And I’m sure tomorrow’s weigh-in will scare the doctors. We will see, a quick update will announce all tomorrow.

London is properly cold and as my brain has been downgraded to the 1.5 operating system it forgot to bring any jacket for me. (The 5.6 operating system I ran before chemo was much faster!) And in London they only sell summer clothes at the moment. Ah well I managed to find a knitted number… We will see, I will be the most colorful knitted patient tomorrow! 

Keep smiling ๐Ÿ™‚ when the drugs don’t work, use it to your advantage and tweak the plan!