9 days after last chemo equals a-ok! We started today by going to the stable, and for the first time since the very last chemo (hopefully the last forever chemo) I went riding!

My energy levels are way down, but my focus was clear! Me and my cousin Ebba and our friend Bella all rode together. We then tacked up 4 unassuming ponies and set free 11 children on hacks/walking/trotting…

There possibly should be a photo bomb falling onto the Facebook skies later on today! It will be filled by smiling kids faces on top of four equally happy ponies. After I had ridden Pluto and led Millie and Pancho together with Dagmar on Azulito, I think my body switched off. It’s funny how it does that. It goes from normal to nothing in less than half a second.

I then had to have a rest and have a sandwich and a cup of tea. I recovered slowly but because of the heat and overall strain, I got a nosebleed that is still going strong… If I won’t stop bleeding soon I’ll have to call the hospital again…

I’m now lying down on my sofa. Clearly tired but oh so happy! A very action packed week for equine people. Horses are jumping very well at the national championships in Stoneleigh, the European championships have started in Aachen, I might go and see my horses jumping on Sunday and tomorrow we are going to England!

Keep smiling 🙂 let your inner equine lover bloom! 

Shakesparian dilemma. Which at 3am in an August morning of 2015 shouldn’t really matter. But it does. It’s become harder and harder the chemo. Yesterday I was like a shiver of my former self. Not only was I totally whacked, I also couldn’t recognize who I was or why. It goes in waves, I’m sure. The sad thing is that this wave is a lonely one. 

Bless Jack, he has really stepped up this last week. He even makes sure that he comes up and sees me mid morning break down time. It’s funny how family dynamics shift, even in such a definite change as the death of Smilla. Before I have not once seen Jack during any of my chemo ridden nightmare mornings, yet this cycle he listens out for me and makes his way up as soon as I’m awake. He also won’t really leave my side ever, even for smaller more fun duties, he stays put.

I’m now sure why they don’t do more than 8 cycles of this hard core chemo. I really don’t think it would be survivable. I have pretty high hopes and beliefs that I’m a kind of… let’s not say “hardcore” but say “tough cookie”. This last chemo session has left me in a void. It could be the combination of the chemo, the hot weather, the lack of outside interaction. There is a definitive lack of friends or family in August here in Mallorca. That in combination with this hot weather really makes for lonely looney ville.

As Jack has made it up to the sofa now he assures me I will never be alone. I’ve got to stay thankful. I’m still alive and fighting. I’m just wondering why me? 

Keep smiling 🙂 when a four legged friend is rooting for you, the world stays at your feet.

I’ve finished my course of chemo therapy! I only now have 14 more injections of herceptin every third week. That’s just in the muscle so will be much quicker than the 3-10 hrs in the dungeon of death and I also can do the final 12 injections in Mallorca!

My week back in Mallorca will probably mostly be done relaxing and sleeping if I follow the “natural” flow of after chemo body. I then will go back to the UK for a 2 week holiday that will end up in my operation on the 29th of August. Following the operation I will remain in London for three weeks (hopefully if nothing goes wrong) and thereafter I’m allowed to go home. But there will be no riding for 3 months. And back to “normal” after about 6 months. I think it will be ok, it has to. But in the beginning of all this if I’d known what I now know I’m not sure how I would have delt with it? How would I stay positive? 

4 weeks after the operation, or shall I say operations as there are plenty they will do, I will have radio therapy on my chest and lymph nodes. I think that I will be streamed with radiation for 3-6weeks depending on what they find during their operations. I’m just so lucky I am getting the treatment in the UK as there just are no shortcuts and we can understand why things are done in the way they are.

Yesterday I met another Swedish girl in the dungeon of death. She was also under dr. Jones and Mr Gosh and she also had a triple positive cancer. She was on her 3d EC chemo. It was good that I got to meet another young cancer sufferer, as we were both under the exact same team of surgeons and oncologists. I could prepare her to her future, just a little bit. And to do it in Swedish also felt good. If by any chance anyone of you know an Erika that lives in London with an almost 1 year old daughter. Send her my love and further encouragement! You will do this!

Can’t wait to get back home to my poor babies Myrna and Millie. Myrna had confirmed Salmonella when we left for London, and Mel had the Rota virus and yesterday we got it confirmed that Mel also has Salmonella. Luckily I think because of our regiem of anti bacterial scrubbing we haven’t got it… yet… Dan was worried I couldn’t get back to the house for this week of rest. I had a plan of staying in the UK for this week of sleep, but I think it would have broken me a bit more. I need to come home and be a support to my second sofa buddy, Jack. 

Keep smiling 🙂 Banksy put on his Twitter account : “you should appreciate all bad things that happen to you as it makes you appreciate what you have that’s good in your life.”… Well I dare you Banksy, join my life for a week or two or three years… Let’s see how you will appreciate your life!

  
My fellow London travelers Mel and Dan

For now! Incredible! August 4th felt so ages away at the beginning of my chemo. In the beginning when I still had hair. Still did not understand how tired I could ever get for no reason other than being. But today has arrived! It’s the day before tomorrow, last chemo cycle of this cancer treatment!

The week leading up to now was less than ideal in our household. It started with Myrna having a fever last Sunday. The fever developed into a stomach upset by Tuesday. 

On Wednesday we had the biggest flooding in our house. The water tank at the back of the house no get refilled automatically when the water is low. There is a floater that tells the well of emptiness of the tank. This time the floater didn’t float, instead the tank overfilled into our storage room and playroom. Mel decided to get the stomach bug by now…

Myrna then got severely dehydrated by Thursday. As both the girls were sick I brought both to hospital Thursday. The doctor was worried about Myrna and decided to keep her in for the night. Dan had quite wisely cancelled his cycling event in Austria when we had the flooding so atleast there was someone at home to stay with Mel and Millie. 

When Dan arrived home he discovered the body of my lovely dog Smilla on the floor behind our bar. He felt a responsibility to tell me. This was the breaking point of me. I was feeling the unfairness of everything. I don’t mind being ill myself, but by getting my 2 daughters ill and killing my dog, it should somewhere be an end. A full stop. No more drama, tragedy enough! 

I’m a quite simple being. I like honesty and straightforwardness. To a fault people might say. Especially after the TBI, I really have a problem with nuances in conversations and tact in my being. (It honestly wasn’t a strong point of my life beforehand but I can now use the TBI card to explain it!) I felt we were being cursed and with all the bad things happening and me still actually keeping some kind of positivity, I fell of the wagon of chirpiness, a deep dark void enclosed it’s acidy jaws around me and tried to drag me down. I couldn’t allow myself to break down in hospital in front of Myrna. She could sense how sad I was, and as the trooper she is she pep talked me through the evening.

Come Friday, Myrna was feeling better, Mel on the other hand had not eaten since Wednesday morning and couldn’t really keep anything  down. I was at home for less than 3 hours with Myrna before I was back at hospital with Mel for a similar stomach thing to Myrna. It turned out Mel had the Rota virus, which Myrna didn’t have. They put her on intravenous antibiotics as she was so bad, the fever would just not come down. 

We were supposed to fly to London on Saturday evening. Mel and I were supposed to do museums and sightseeing on the Sunday, I instead managed to change the flight to the Sunday evening. Myrna and Millie were supposed to stay with my brother and his family for the days we were away. As our kids had the stomach thing we had to replan everything and make a schedule of friends and family to stay with our children at the house. Phew, it’s been some planning! I’m truly blessed I have such a great family and superb friends!

Dan rebooked his flights again. Instead of flying from the st Anton cycle race via Münich, he flew Ryan air from Palma with Mel and me to London. We were quite worried about flying as Mel’s stomach still had its own “timetable” for everything, especially number 2s. We came equipped with diapers for the flight. And extra change of clothing… But as luck had it we did not have to use it!

Today has been a day of discovery. It started at 8am with a consultation with a plastic surgeon about the reconstruction of my breast during the mastectomy. He was quite positive about the implant option. The second appointment was a scan of the stomach and chest. They injected me with the contrast dye that makes you get hot flushes ofer your entire body. It would all become clear later on in the day why this was done.

My third appointment was with dr James Mckay, a genetics specialist. He put me in the higher category of genetic breast and ovary cancer. There is a blood test you can do to find out and even though it will have little impact for me as I already have cancer, but it would be good if I have the bad gene for the sake of our daughters.

We then had a few hours to enjoy our friend Osh’s new pub in Islington, The Canonbury. http://www.thecanonbury.co.uk a fabulous inner city pub where Osh is allowed to bring is own super pub skills. It’s still early days, but his clever pub creativity will make it a talking point in Islington!

On our final appointment of the day we met up with 2 more surgeons. By this time they had already got my scan results and had a look at it. It turns out that despite my hernia mesh I’m a good contender for the DIEP surgery. That’s where they take tissue and fat from the belly and create a more natural feeling breast. This would be a better option because I am having radiotherapy straight after the reconstruction. So we had a real 360degree turn around when it came to the options for my reconstruction. We have another meeting with the surgeons again and also the oncologist tomorrow. The biggest drawback with the DIEP reconstruction is the operation time, it’s more than double of that of an implant, also the recovery afterwards is longer BUT you don’t have to have other operations afterwards!

Lots to think about! Tomorrow is another day and hopefully this will be the last of my chemos ever!

Keep smiling 🙂 sometimes the hard times can get harder just to show you what you should be grateful for! In my case my helpful friends and family you rock!! ❤️ 

I had this picture sent through on an email for an artist exhibiting in Santa Ponca, Julita Malinowska. I thought it was me!

I am quite a regular at places like this! Juaneda hospital in Palma de Mallorca. Although today I’m not here for one of my ailments, today I’m here for my daughter. She came down with a temperature over the weekend, then it has stayed put, on and off over the week. She hasn’t been able to eat or keep any food down for the last couple of days. Yesterday her sister also started to have a fever.

Today she was so weak she nearly passed out twice, I had decided coming back early from the horses to take both girls to hospital. Here the doctor checked them both out and decided to keep Myrna in here. After blood, wee and poo samples all was gathered we managed to get a bedroom close to where I used to live. (In the first month after my “initial” accident). The start of this blog. It kind off stared here. Now that I’m back, blogging about sickness with the ventilation systems whirring in the background, like I never left. 

It’s a strange feeling. Not as strange as this week but quite. Other than Myrna’s illness we have had an awful week.

Yesterday we had an earthquake like experience in our house. Water just poured in by the bucket load. And it kept coming even after we turned off all water. It turned out to be a faulty thing on the water deposit, but it’s unheard off not having a safety overflow valve on the system… We might have to change everything downstairs. Today my world has been shaken yet again. My lovely sofa buddy, my caretaker, friend and thunder buddy Smilla has passed away. There is no better word for it. She was here last night and we shared the sofa downstairs during the night and this morning she was just a little bit weak. 

After I came back from the stables I couldn’t find her. This afternoon when I was in hospital, Dan found her, he said she looked like she had fallen asleep behind the bar. She was a once in a lifetime dog and only because I’m in the same room as other people all the time here at the hospital, I have had to keep it all together. I need to break down just a little bit. I need to find my space where I can cry and allow myself to grieve her. But at the moment I have to stay strong and together, not be to angry about our house falling apart, not let the loss of Smilla unearth me, no now I have to stay strong for the bravest little girl I have, Myrna.

Keep smiling 🙂 if not for anything else, the irony of everything… 

I thought I should share. My big toes are now disgusting. How they ever will become better is beyond me. It’s like the bleeding underneath the nail has become a really manky area of puss and nastiness. It’s also a problem that it’s my toes and not such an easy place to reach/treat. 

I feel like an idiot trying to call the doctors at the LOC about my manky toenails. But equally I don’t see how they can become better without any treatment. I am worried that with my lowered immune system I will develop some kind of in-curable nail fungus infection…

  
I hope they shall say “don’t you worry, this is all quite within reach of nasty happenings during chemo” but they might want me to go and chop off my toes… “Yes you better chop those chubby nails off off off!”

I’ve been back riding this week. Yesterday and today 3 worked in the morning, before the flat out heat boils down on us. Then I guess I hide my nails in boots so another point of why I love my horses! -“You can’t see your nasty smelly nails whilst wearing riding gear!”

Keep smiling 🙂 at least your toes are a long way away from your nose, if they stink, chances are you won’t smell them!

At some points in this chemo stuggels I would like to talk to someone who has been through this kind of hell before, to compare if what I feel is “normal” or similar to what other people do in their treatment cycles. This is one of those times, I would just want a short and sweet, “yes, you being beyond tired most of the time is completely normal” or an “no, as tired as that doesn’t sound good at all”. Just as a quick guidance to see if I’m within range of acceptable sufferance.

It’s “funny” how tired this chemo can make me. I sometimes find myself not even able to speak. Just moving my lips can be a too huge effort for me at some times, it’s not all the time but often enough for me to worry about it. And I do worry. I only wear a mask of very convincing care free and happy not to annoy or worry my closest. It’s never easy going back to early post accident feeling of numb left side and tiredness like a black cloak hanging over me. This is where the real weird part starts. Even when I feel as tired as this, almost like an out of body experience, it all goes away when I get onboard a horse!

I’ve been so careful not to get on a horse when I’m too tired, but yesterday after being on ground helping 3 horses jumping. I decided to get on my horse Pluto even though my soul was vibrating away from my body. It was almost immediate, when I got on the horse my spirit and body assembled! And as long as I stayed onboard I felt fine! 

I’ve also started a 40 day meditation challenge. It’s with Kundalini yoga and it’s supposed to give me more energy… I’m on day 5 and I think at least straight after the meditation I do get more energy. 

Keep smiling 🙂 look up to your third eye and find that inner energy!

Everything happens for a reason. That’s a load of boll**s! I’m sure plenty of thing happen for no reason at all! That they challenge you to quickly change what foot you stand on. To find a new direction, balance or even change your initial goals.

Here I am day 6 after my 7th chemo. As I have felt better on the last couple of chemos than I did on the first 4, I assumed I should feel better! That’s some assumption. And it’s quite a shame as it couldn’t be further from the truth. I have so little energy, basically just walking downstairs makes my heart beat in hysteria. My breath becomes shorter and in reality it feels like I might collapse. If I stop right away then it all slows back down and I’m ok if I don’t try and move at all. If I on the other hand ignore it and try to continue walking/moving I look like a 100 year old woman. If I compare it to the first 4 chemos my actual energy levels seam to be less now than before, but sadly my brain seams to be working full pelt. 

Today I’ve done some edge sport, cooking plum jam in 35 degrees heat! That’s befitting hard core edge sport! I try and challenge myself even though I’m like this shadow of my former self. The challenges get smaller and still they get harder to do, go figure! The everlasting challenge I have is against my self, my temper and my attitude against my family members… 

The only point in the day that really clears my head and strengthens my spirit is the early mornings. There is promise in the air when the temperature drops below 29 degrees!!!

See I really shouldn’t complain! It took me a bit longer to write this so now it’s a cool (ish) morning! Today it’s not an average day, it’s my super duper brothers birthday! He has come to Mallorca to celebrate so later today we will do just that, although my now celebration style would be preferred in a fridge somewhere! 

Keep Smiling 🙂 one more chemo to go!!!

Mallorca, mid July. Well anyone could have told me this before, it shall be hot. It’s a little different being trapped indoors, in house without working Aircon or fans… I feel a little bit sorry for myself.

I’m desperately trying to figure out how to stay sane, trying to organize things for the future and my upcoming operation. The hardest thing to do is to explain to the girls that I need to stay in the UK for 3 weeks after the operation. Also trying to find a solution that will keep me fit when in London post op. All doing this whilst trying to keep lucidity in this heated chamber without air…  The worst thing is we had the Aircon units all gone through and fixed before summer, and even so it’s still not working. Oh well, never mind, I could always write about this experience at a later date, if I survive it!

I am watching stories of people being trapped underground/in caves/in the mountains on fabulous channel on sky TV very bad accidents that apparently saves most of the people at the end. Not sure it makes me feel any better, actually rather sent me the other way… I went to sleep for a good 2-3 hours.

I still don’t feel lucid. Maybe the cool of the night will sharpen me up, maybe I need to go to a hotel and be locked in somewhere cold, oh maybe I should try opening the fridge, just to not melt…

Our guest Tony (godfather to our oldest child) has been helping out as new manny, as our summer nanny decided the job was not for her, leaving us mid-cycle, not really anything to hope for in the midst of all this. Why not up the battle for this family? We need a little bit more to work against us! 

Thankfully, other than the heat and the obvious tiredness that comes with this chemo hell, I’m not feeling too sick. Not throwing up, yet, and could come with to supermarket today. Sadly that was this morning and since coming back around 1pm I’m not too good.

Oh the little things that shall set us free. We will see what the little things will lead to.

Keep smiling 🙂 even when your face is sweaty and hot, turn that frown upside down!

This is a new oldie. I’m back to my first chemo gitter bug! Brand wake the world up awake at God unruly hour. I’m not sure why but it could be yesterday and thoughts about it to keep me awake. It’s not the flat out afraid or shaken, it could’ve been that but I’m more lightly stirred, like a drink prepared for James Bond.

Yesterday again started early, not like today’s early but 4am and shared in a hotel room it does not easily involve doing normal stuff like reading/watching TV/writing stuff(until I found the button to lessen the screen brightness on my mobile and now I can without waking up poor cousin Caroline!). A bit of turning and thinking finally managed to solve a whole lot of world mysteries/Greece debt problem/war with IS, unfortunately as the world is for me right now my short term memory is really bad so by 07:02 (Caroline’s waking up) my solutions to the greater good were mostly gone.

We went for breakfast in a London cafe and it was great! Then off to LOC for the meeting with dr Jones. Again she pointed out my doing so well and being such a model patient to Caroline this time as she accompanied me. She could also not feel Brenda! The biggest of my tumors has disappeared. The sad thing is with her going also most of my breast has gone with her. The right breast is now a flat shrinkly memory of its past self. I had a list of questions to her about the operation etc. By going through it with her we realized most of said questions would be better for the surgeon mr Ghosh, and as I was seeing him later in the day this was a good thing.

Going down to the Dungeon Of Death for the second last time, I started recognizing more of the staff, and they more or less recognized me too! I got Fabiana from Portugal as my poison distributer of the day! She has been my nurse twice before so she is getting used to my cheerful banter, not everybody else though! For the first time in the Dungeon Of Death I was being told off! For laughing too much! I’m sorry, I know that serious business is ongoing there, and there are a lot of people in pain going through hell and more, I’m sort of one of them. But Caroline’s re encounter of learning English swear words from friends in school, and not only mistaking the “Fu** You” for the not too offensive “Thank You”! But also instead of pointing the middle finger she got a finger dyslexia and pointed the pointy finger!!!! Imagine people’s surprise of angering this 7-8 year old girl and getting a pointy finger pointing strait up to the sky, with her yelling “Thank You”! I cracked up! We were both crying with laughter and this is were next doors nurse came in to quiet us up, well mostly me I think. You can’t have poisonous treatment here in the Dungon and laugh about it!

My bloods were good again! Thank the higher power my potassium levels were alright again!  The potassium is not a supplement I would wish on anybody to have to take orally! It could on the other hand be used in torture by the military on so many different levels… Doesn’t bare to think about it… The chemos 3 different poisons were put in, only the Herceptin level had to be put up. As I have gained almost 3kg in the 3 weeks since I had it before! It is responsible for a lot of Brenda’s disappearance, so that should have lessen my weight but it in combination with the other poisons binds a lot of water to my body so therefore I now weigh an impressive 73kg!

It’s mostly water they all assure me, I think not, a lot of good food and cakes have been consumed in Sweden, I think a new diet of raw salads is on the menu again when I return to Mallorca!

The 5 1/2hours went by so quickly. And as we were leaving the strangest thing happened! I heard a voice saying “you are amazing”. I looked around and saw a young dark haired pretty lady, looking kind of in my direction but as I was queuing to the loo, I thought she was talking to someone behind me. No one there so I turned to her again, I had never seen her in my life! “What you do is truly fabulous!” This time clearly aimed at me. She had come across my blog via an emailed she had had forwarded from someone. It was incredible to meet her, as she just wanted to point out how much she appreciated reading about my story  and that I could stay so upbeat most of the time! As she worked at the LOC I hope she understands that the work they do there for everyone is remarkable! It can’t be easy meeting all the sick people in various state of recovery or not so much. I know I should have found out her name, but as the loo was clear I lost her there.

Because Caroline and my other cousin Ebba had brought me some delicious Kushmi tea in May, and since then I have found a shop in Marylebone only selling Kushmi tea, I had booked in a tea sampling session for me and Caroline at Kushmi tea in Marylebone high street. This I can honestly recommend this for any tea lover out there. We got to sample 6 different teas, and got told the whole history of the Kushmi teas, the background of the teas Anastasia and Prince Vlademir and the mixtures used in them and why. It was a truly remarkable hour!

I was ready for my meeting with the surgeon. He asked how I’d been feeling and finished laughing at me when I explained that because of my traveling to Sweden I hadn’t managed to ride at all in the last cycle. I then told him of my going to Falsterbo instead meeting up with my riders and business partners and of my miracle paperwork before leaving for Sweden. I don’t think he gets that many upbeat forward thinking patients there, so I hope I make his life a bit easier, well kind of. My breast care nurse with him is called Lisa and she is an incredibly awesome Aussie lady! She was not very happy about the Ashes results last weekend so I didn’t rub it in too much that England (total underdogs who barely scraped by in the pre-ashes test matches against lilliput nation New Zeeland) beat the great grand superstars of Australia!!! They won by 169 runs which I think is pretty impressive! Well I’m not saying to much as the test match at Lords starts in two days, oh fingers be crossed!

Mr Ghoh examined me and came to the same conclusion as dr Jones, the tumor was nearly gone, but so was the breast. He went through the options for me with the op. The nipple has to go, because of Nina the nasty nipple hiding tumor, the risks of the cancer coming back there is too high. Nipple and surrounding areola has to be taken out. I then have a couple of options when I remove the rest of the dying two tumors Brenda and Brittany. I can remove them and the nipple and not be left with much on the right side. Or I can remove and put an implant in, or fat from my stomach or muscle from my back. We were discussing all the options as I started to realize this is no walk in the park. The minimum operation length is 4 hours and it can go up to 10 hours for the most complicated op. The minimum stay in hospital is 7 days. I guess this is different for everybody, but as I come under “the highly active not probably listening to much of our keeping calm talk” I think they have booked me in for hospital for that length for a reason.

I was given a book and a leaflet about the different options I have for the operation. Last night when I couldn’t sleep for some reason (I blame it on all the awesome tea) I managed 62 pages in the Macmillan book about breast reconstructions after cancer. It takes some reading. All the options with the medical names of them as well as what they actually are. The plus and minus of each option. I think I have to read it again today, would read it now but as I can’t turn on any light it will be later on. The pictures of the breasts post-op are incredible. The best ones are the natural ones that average a 9hour op, but I’m not sure I can do that. The regular silicone implant with the filling option under your armpit also looks like a possible option but as I’m having radiation treatment afterwards it could damage the implant… The pluses and the minuses, I have decided not to go for the cutting out breast and nipple and going one breasted, I think living in a country where I spend 300 days a year in a T-shirt or bikini it would make the fashion me conscious, and as she isn’t very big you should know how strange it would make me feel to only have one breast. We were also talking about my genetics testing that for some reasons beyond me have to be taken again and sent off. That’s blood sample taken to see if the cancer I have is genetic as my mother and her aunt had breast cancer. It’s better to know, I don’t think I have the awful Angelina Jolie gene, but better to be safe than sorry. I will meet the doctor and take the test next chemo time in London. I have also been booked a surgery time, much earlier than I thought was possible, but I guess they want me to have a life back as soon as possible! 

Keep smiling 🙂 every day has new miracles waiting to be discovered and memories remembered to make you laugh out loud!!! 

I added my wig to the art at Kushmi tea

breakfast awsomeness

At Kushmi tea they use wigs as art!

“Thank You”