One thousand stitches later

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 ๐Ÿ™‚ sometimes the drugs do work!

The hair is leaving againย 

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 ๐Ÿ™‚ I’m sure there will be hair! 

Countdown has begun

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 ๐Ÿ™‚ wonders and miricals are just around the corner.

Tired but happy

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 ๐Ÿ™‚ let your inner equine lover bloom! 

   

To be or not to be…

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 ๐Ÿ™‚ when a four legged friend is rooting for you, the world stays at your feet.

On way back home

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 ๐Ÿ™‚ 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

The last chemo tomorrow!

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 Mรผnich, 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 ๐Ÿ™‚ 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!! โค๏ธ 

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