To get to the zoo in the morning all I have to do is walk straight through Regents park. In the calm morning a lot of the London crowd is out already exercising. There is a great calm hanging over the entire park. I now know that part of the calm I felt walking through the park will have been my choice of music.

I was listening to A Hundred Blessings by Mirabai Ceiba. It’s what I use during my meditations! No wonder Regents park was so relaxed, even though I passed a thousand people running a 10 km race, a lot of cyclists, ball players, racket sport people and dogs! 

The rehab is going ok. I keep walking a little each morning, between 3-5 km and the Okapis are my “carrot”. The female okapi (Oni she’s called) has really taken to me (possibly her only daily stalker). On Saturday she was about 1 centimeter from my face and tried to lick me!

I tried to stay cool about it all but seriously?!?!(!!!!!) An okapi so nearly managed to lick my face!!!! I was there again yesterday but she was more interested in galloping around and eating that chatting with me!

I think I should write a manual in how to stay fiercely positive and energized through rehab after major op! I would seriously recommend to become a yearly member to any zoo/national trust or similar. So that you can go outside and enjoy what you see. I have during the last couple of days doubled up as Oni’s personal guide! If you need to know anything about Okapis in general or her specifically just come and see me! I’m normally at the Okapis paddock between 10:30-11 more or less!

Friday will be my last day for a while! Then Saturday will arrive! And I will go home to my family!!!! For two weeks at least! 

Keep smiling 🙂 There are plenty of Okapis out there for you all to be in awe of!

I have been set free! I’m no longer in hospital! It’s a brilliant yet a slightly scary truth! 

It’s strange coming from such a profound background of long hospitalization stays, that this time only being 10 days and all, removed me from my safety platform. I’m not sure if it was the size of the operation or the combination of everything that has totally whacked me. But I feel like some released prisoners sometime do, I’d like to go back in again. It’s a weird thought. I’m not even sure why I have it. The security of being somewhere where you know everything. Where there is a rutine. 

We are staying next door to Sherlock Holmes. Literally next door. When he was fire bombed in one of the episodes on TV, I’m sure we would have suffered! Mum found this flat on a very short notice as the one I had managed to rent didn’t have a lift and it was 4 stories up. There are mostly positives about this flat, the only negatives are that it has very temperamental Internet and no reception for mobile phones! As I am addicted to Internet, what’s app, Skype, or mobile contact with world outside I go slightly frantic if I’m in the flat for too long. We have this little restaurant/cafe at the bottom of the building where I go for licorice and mint tea and free Wi-Fi!

The pain after the op is more or less controlled by the painkillers. I have found that sleeping in a “normal” bed is possible with help of 5 pillows! 3 under upper body and 2 under knees. The “sleep only on your back” rule is really hard to follow. I am a solid “side sleeper.” Often known to wiggle and change sides on plenty occaccions every night. This new me, this back sleeping, lying still, raised knees and upper body will be a new experience for Dan when he comes and visits!

London is such vibrancy of many cultures, languages and colors. Even though I’ve come here quite a lot in my life, especially this last year, I always get a little thrown. Today I’ve made my first appearance to my new friends the Okapis at the London Zoo. They are magical creatures and especially the female and I became very good friends! Tomorrow I will try to walk all the way from the flat to the Zoo. I still get insanely tired from very little exercise. Let’s hope I can build up my previous perky self!

Millie sent me a self portrait she drew today! How I miss her❤️

Keep smiling 🙂 the stripes and the chocolate color might not get you at first, but the ears! By love, the ears! 

9 days since last 8 hr operation, I’m now awaiting my second op! It’s just the removal of the port-a-cath that they have used for my chemo. It’s a small plastic thing that sits right under the skin under my left collarbone. It’s been super helpful to have the port-a-loo for all the crap that they have managed to fill my system with! But as last weeks operation was a big one, today’s is the final “full stop” to the silly notion of cancer in my system!

It’s also a thing my daughters have been acutely aware of. “The side (left) where one can’t kiss or cuddle mummy.” I’m sure they are aware last weekends operation was fairly big, but to them tonight’s operation to get rid of the “three bumps” is more comprehendible and therefore more important to them. They are at the moment on the beach in Palma Nova playing with my friends and their kids on holiday all the way from Sweden. I am so happy they didn’t choose to come last week as it was raining buckets in Mallorca… On the other hand this autumn is proving to be a bit hard for any social things as I’m in the UK for treatment on and off most of the time… 

Okapis are my new obsession! If you don’t know what Okapis are, please google them now. They were discovered 1901 in Western Africa. They are magical creatures and since I’ll be staying close to regents park I might become a member of the London zoo. There they have a few Okapis! It might become my every day walk to meet and greet them? As I’m not allowed any lifting/sweaping/ironing/grooming/saddling/riding/running/rowing/swimming/pushing for the next couple of weeks I think walking to and gazing at the Okapis might be a brilliant treat!

I’m now allowed to ease of the wear of the white high stockings that I have been wearing day and night for the past 9 days. I only have one more night where I have to use them and then I can restrict usage only to days when I’m not so active! Cancer is cruel, and breast cancer is such an anti female disease. I mean first they give you chemo, you lose your hair and gain weight, then they remove one of your breasts and put you in disgusting looking socks in combination with the rubbersocks (thank you Bitte for the Sockiplast reference!)  When your hair then started to regrow, it then for some unknown reason -so far put down to stress- it started falling out again…. Well I’m not so sure it will all grow back again. 

For the last couple of days I have been very lucky as I have been taken out to eat in restaurants here in Marylebone area. First it was Elena that took me to the Scandinavian Kitchen. We walked there and taxied it back. Secondly it was my mother and mother-in-law that took me to a French restaurant. Same thing, walked there and taxi back. The last couple of times I have managed both to walk to and from Marylebone High Street. I do all this in combination with my stairs training. I’m on 4 1/2 floor so by going down and then back up I climb roughly 9 floors! My surgeon is getting a little bit annoyed with me. He really wants me to take it easy. I do tell him I will! 

Keep smiling 🙂 let the gentle creatures like the Okapi touch your heart! 

Well there are cup sizes and shovel sizes when it comes to bra cups! After my operation he new breast that we have named Bella, is a cup size D. This is partly because of swelling and partly because they made her bigger because she will shrink when I start the radiation therapy. 

Today something has gone a little wrong and she has swelled up to a gigantic F cup in size! Betty, my left breast looks like a midget in comparison. I believe I’ve always been pretty much a B cup, more or less level on both sides, now I would struggle to sit straight on a horse! The pure weight of Bella would pull me towards the right. Oh dear, my horses would get so confused!

I’m not sure to what extent I’ve explained the operation. They removed the nipple and the innards of Bella, then went through that way to clear all my lymph nodes under my right armpit! Then they excavated tissue and fat from my stomach to create Bella DD, in fact I think she is designed to become a C cup when all normal swelling has gone down, to then shrink a little more with the radiation. 

At a later date one might have to “lift” Betty, to make her a match to Bella, but size wise they are promised to be basically the same, only one is brand new and the other one is 40+ and has fed my three children.

The last attachment of the stomach tissue in to Bella was done by a micro surgeon. He attached the blood vessels that goes through her! It’s an incredible feat that he has accomplished! The tissue is alive and blood is pumping through Bella! She is soft and warm and feels like a normal breast! Incredible! Although right now she feels like 3 normal breasts on my right hand side… Ah well this too will pass one might hope!

I have started my rehab training properly today. I have walked for 3 longer trips, one involving walking down 5 flights of stairs as well as back up them! I now dress in my own pyjama and not in the bottom baring hospital gown. When you meet other fellow inmate people exercising it can get quite hard to spot them if they are in their “home clothes”. I found out a real tell tail sign are the yellow plasta-socks! The kind people born in the 70’s and 80’s wore as toddlers, we all wear them here not to slip over! Result! 

The corridors are as in most hospitals quite uninspiring. I’ve gone all out insane and allow myself to imagine forests, flowers and animals that I share and describe to my fellow inmates and nurses. I bet they think I’m full on crazy, but atleast I’m exercising somewhere new and exciting every time! 

Today the weather in Mallorca has been crazy! They had a hailstorm with hail the size and shape of ice cubes! No need to go look for ice for your G&T, just put the glass outside the window! Must have been so scary to be caught up in it! There was a lot of thunder as well, I do worry for my thunder buddy Jack and hope he is alright without me.

Keep smiling 🙂 make where ever you are super special!  

That in pure English should be called corset! Or torture gurdle. That is what they make you wear here after a substantial op to the lower stomach regions.

Someone somewhere has designed said torture material with an inkling bit of sadanistic pleasure. It made out of a really hard stretchy material. It’s in two layers both being roughly 30 cm wide. They overlap so the entire corset will be approximately 45 cm wide. It has a thick lining of Velcro that keeps it tight and together. At the front of this highly unpleaserable tool is a small flower! Why on earth??? Who would ever see said flower? Why is there one? Wouldn’t a tractor or medival torture tool be more appropriate?

Yesterday I was being fitted for one. The size Large was way too small for me! I was liking it less and less! Then they gave me a bigger size (possibly the XL or the XXL) which at first took all my breast care nurses strength to pin on me. I with my broken finger did not have one little bit of a chance to strap it around my stomach! I was also fitted with a wear-all-the-time-bra! It’s necessary to wear all the time for the breast to like its new home! This took out all little energy I had of the day and as I had done little walks to the loo by myself, the fitting of the new torture tools was basically my day done.

Today is a new day! I managed to have a supervised sit down shower! Followed by me strapping myself into torture tools! I have since had 3 walks out on to the ward! With the physio Sophie I even walked up and down a set of stairs!

I’ve been sitting out in the chair a lot as well. For all my meals and when I had my sister in law visit me! The last drain was removed from my underarm, and I feel great! Other than my finger that clearly is not getting any better still. I had another x-Ray today. Nothing has come back about it but I’m beginning to think ligament damage. I really am not wimpy when it comes to pain, but after this whole operation etc, my finger is where I have the most pain. Silly falling on sidewalk!

Keep smiling 🙂 sometimes you find your secret garden within yourself  

In the worlds most hidden hospital room, that now has been found twice by outsiders (woo hoo for visitors!) the clock has turned past midnight. It is now officially Thursday.

The staying in hospital and getting stronger is ok. You are locked away in a small room far away from other people to interact with. Given small incentives of what you can do. For example I had 3 of my drains removed today! This means I can go to the loo on my own just carrying my one remaining drain!

It’s very quiet here in my secret part of the hospital. Have I’d been more inclined to sleep I’m sure I would have done a great job sleeping… I’ve had more news today. They want to keep me here for another week. This is so everything should be more healed and to remove my port a cath next Tuesday night. If all goes well I can leave here next Wednesday…

I’ve realized how sensitive my skin is. The longest cut on my body is the hip to hip cut. That’s where the majority of stiches have been made. They have put solvable stitches on the inside and some fine fishing line stitching on the outside. On top of the stitches there is 3m tape holding the sides together. Today I removed the 2 main drains from my stomach. The nurse found 4 or 5 areas with really bad blisters. Also on the left hand side of the stomach, the drain had bled quite a lot.

Got bored about writing at 1am, now it’s 4am.

The drains were awful to pull out! Gosh they were lodged a 20-30cm in to the wound. They were held in by a couple of mega stiches made out of either steel or thick wool. After the nurse had cut them off she had to jank and pull to get them freed from the stomach. The pain was rather superficial, as you compare things to be pain wise in this labyrinth of nasties, but the feeling when they pulled them out was indescribable. It was like a live animal was being pulled out against its will, trying to make as big a scene of it as possible. The right hand one finished by coming out with a huge “plop” sound followed by a hissing of air, totally freaky creature sounds!

I have been told they are keeping me for another week so I’m not being let out of here until Wednesday next week the earliest. That is so they can leave my on remaining drain in for longer as well as my port a cath, if they need to access my blood or give me IV.

This is a bonus I hadn’t thought of. I’m now able to sneak off to the loo for a private one-on-one business. Even without nurses, doctors or kids interrupting me!

Although I couldn’t recommend people to try this experience for additional writing. It just doesn’t seem worth it. The non sleeping business to begin with. A recommendation for writers, don’t try and injure self or get life threatening disease as even though you might enjoy reading about what happens to people here I’m sure there are other ways of shifting writers block!

I had a dear friend who happens to be a writer describe me as something wonderful last week: “I think you’re a feisty light being. Like an angel in disguise taking on some of the biggest challenges xx” Well I certainly love being a feisty light being! I’m going to try and keep being this for as long as I can.

More about the corset fitting tomorrow.

Keep Smiling 🙂 let the feisty light beings improve your lives wherever you are!!! 

I’ve had the 48 hr critical a-ok from my surgical team. I am apparently a formidable team player when it comes to operations and such!

I’m snuck away in a very super private room! You almost need a map and a gadget to find me here! I have my first visitor today and I will ask her how she found me, that is IF she finds me!

Everything has been going ok. My red blood cells were low so yesterday they decided on giving me a blood transfer. I think I’m a very sensitive soul for any organic transfer. It was probably imagined, but I heard a hundred little voices, almost like thoughts, all different, unrelated to anything in my life at this moment. Very strange. But I guess the good thing is only good people give blood, so their thoughts were not of the spine chilling serial murderous kind that came with my drug induced hallucinations the night before. Yeah, got that a little… Felt a little sick before my dinner so I decided to have an injection to make my food more palatable. Unfortunately the drug gave me terrible hallucinations. So I still couldn’t eat, but on top of it I couldn’t sleep or think… 6 hours later I was all better again!

This staying in hospital is a tough experience. It’s not that it’s not ok. It really is but little things can totally make me tumble. After today’s loo visit for instance. I was just casually sitting up in a chair for less than 5 minutes. Then I started to black out! It was so strange. Everybody felt like they were in a different land to me. I could gaze them and hear them through a haze of not-right-now. They managed to get me back on to the bed. My grandeur plans of freeing self from catheter and be a taking care of myself woman were quickly crushed. I was put on oxygen and back in bed. This is where today has been spent. 

It’s ok don’t get me wrong.  You really spend all your hours here, and so much and so little happens. It’s very strange, to realize how much we live our lives passively. It’s not until you are here in a situation totally revised by the clock on the wall and nothing else, that you realize you should appreciate everything in life. All the punctures, lost shoes, eye infections, stomach flu, car crashes, rain, thunder… Everything that counts for something.

Keep smiling 🙂 tomorrow I will make it to the shower!

I have woken up. It’s like waking up after a dreamless night, where someone has ripped out my innards, slightly pulling and replacing bits of me. On the finish line I am bundled together by more than 1000 stitches!

Yesterday arrived as yesterday’s often do. We had a 7am check in at the hospital. We met all the special people and doctors as well as the anethistiatist. 

By 10am I was put in to my sleep of the day. Whilst I was being operated on in various different ways the rest of the world played on without me.

Well not so fast! I just remembered that in true marshian era I managed to do something remakably stupid the day before the operation. I had been to the post office to renew one of the girls British passports. I was feeling light and happy as this was something that we had tried to do for quite some time now, and this time I had managed to bring all the right papers/photos/signatures and they had accepted it all! Walking jollily out from said post office I had a mere 10 meters to walk on sidewalk before getting in to car. Well then I managed to fall face first on to the stoney pavement. Tearing both my hands in said process. Injuring the ring finger on my left hand to point of no useage. 

So what does a family of five do to a mothers beaten hand on the day before her major op? Well we strapped it up fairly well with a plastic bandage. It would only have been strapped up in A&E anyway and wasting a lot of time.

As I was being monitored by my surgeons, anethistiatists and nurses we had at least 5 that said “you should have that x-rayed”. Well as we were at the hospital it was the right place for it!

After 8 hours of operations I was being woken up. I had been warned on by how hard the operations could hit me. I was promised to feel like being hit by a double decker. Another doctor said it could reminisce being hit by two double deckers. I woke up numb. 

It was 6.30pm. I had a lovely Spanish nurse called Elena looking after me. She was from Galicia and as we have horses jumping in Gijon this weekend I thought this must be a good omen. Watford was playing in Man City and I was dreading the first loss of the season. But in the ICU or the high intensity unit there is no sport. No people that carry any news of sport events. It’s like ground hog day…

They did bring in x-Ray machines to take x-Rays of my chest and also to include my left ring finger. 

Dan came in around 8pm only with part report of Watford game 0-2 to man city, but that was only half time. No results from any horse jumping.

It took another two very friendly nurses in the ICU to make me feel a bit more like me again.

I have this impressive gadget, I have renamed him “ghost buster” they call him “pain buster”. He basically gives you a shot of morphine when you need it! Think there is a real resealable idea. That nobody has thought of before now! Just intravenously gadget your morphine fix!

These are worlds clearly written by someone on morphine…

Better go now! 

   
Keep smiling 🙂 sometimes the drugs do work!

I’m not sure why this is. The last chemo finished 24 days ago. I should slowly be getting “over” the poisoning ordeal. Not so much. 

On Monday I had the first of 14, 3 weekly cycle Herceptin injections. It was alright. I bruised a little around the area, but all in all, it was ok.

This week has been spent in Warwickshire, visiting friends and family. My tiredness has completely engulfed me. I wake up early in the morning, only to be half comatose after an hour or so. It’s so annoying as there is nothing I can do to stop it. Have tried being outside, walking, taking it easy, doing “some stuff”, doing nothing, eating something, avoiding eating… There are plenty of things to do. Nothing makes me feel any better.

Two days ago I started losing my hair again. It started to feel like early chemo time, a bit sore when you touched the hair and the scalp. Then I started noticing hair a bit all over… It’s about 1.3cm now and quite noticeable. In the bath a couple of days ago it was like a full hair pot. People can’t see it but I can feel it getting thinner.

On all the online “help” sites there is nothing that could “help” me with this matter. As it seams compleatly unusual and not by the “norm” to have all your hair fall out a second time. Apparently Herceptin shouldn’t be a culpit… A well hell, what do you know.

I’ve met up with a lot of lovely people from the past and it’s given me strength for tomorrow. Even though I’m so tired, luckily the don’t expect me to be awake during the operation tomorrow!

Keep smiling 🙂 I’m sure there will be hair! 

The week has started. That is the week of the operation. Hopefully the one and only “real official” operation.

It’s on Saturday, so 5 more sleeps. That’s how we count in my family.

We’ve had an action packed holiday in England involving a 5 day break at Center Parcs and a weekend of fun in London with the kids. It’s been really good and thankfully energy levels have been ok. Other than at London Zoo we ended up renting a wheel chair, I’ve been able to participate even in tree climbing and areal adventures!

My energy levels as well as the TBI affected area (mostly left hand side) has become gradually worse during chemo, but quite dramatically worse after this last chemo. I was yesterday thinking back to when I had the left hand side as bad as this. In my head I got back to 2012, but I realized then I couldn’t really walk unsupervised, so I now think it was March/April 2013. It so happens that was the month I started back riding. 

I don’t know if this is something that only happens for me. But I think probably not. But the recovery whilst in presence or in my case on top of my equine partners is phenomenal. If I think back on the chemo. After every session, when I’ve come back riding. 

The earliest was 8 days after chemo. I’ve started back on one horse first day. Already by the second day energy levels were up and I could go back to riding 2-3 horses. By the third or fourth day I could feel my left hand side being back to my new “normal”.

I think it’s the combination of activity, doing something I know and love, but the third thing I think it’s the energy of the animals. The vibrations shall we say. When I am around the horses or on top of them, I feel better so quickly. Especially on top I can almost sense it. You have to stay quiet, and calm, two things I’m naturally not very good at, but then it’s possible. 

The closeness makes the air almost vibrate a little. It’s so gentle and tactile. It’s only tangible in reality by the results it gives me, but in the 2 chemos I have not ridden or actively been around horses but yet stayed active, the outcome has been so different. 

I really don’t know if it’s the horses, or the lateness of the chemo. The so call build up of poisons that gradually kills my spirit as well as the cancer. But after cycle 6 and 8 I’ve been a lot worse than after the other cycles. I can only compare to cycle 7 really, as its a “late” chemo, but where I almost got back to my “normal” self whilst/after riding.

My poor children. The older ones that can remember how I was before the first accident, the little one can probably only remember me as a cripple, more or less. I don’t mean to offend. But she has grown up with a mother that goes to hospital more or less every month. Have lengthy stays away from home. And have a seriously relaxed attitude towards medical terms/treatments and language. 

This became obvious when she found the “stress breasts” in uncle Tony’s flat where we are staying in London. The three girls laughed about Millie wearing the stress balls as actual breasts which looked hilarious on a four year old. They then started on removing the right breast, with the nipple, only to returning it back to front, nipple-less.

  
I think it’s probably all very natural for them as its part of their daily lives. But still I long for everything to go back to a sense of normality. 

Keep Smiling 🙂 wonders and miricals are just around the corner.