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 🙂 beautiful beats and blue nails make a disco wherever you are! 

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 🙂 sometimes the smallest steps gives the biggest results!

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 🙂 be inspired by the unknown! Don’t fear it!

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 🙂 when the drugs don’t work, use it to your advantage and tweak the plan!

I rose to the challenge today! We had planned this for a full week. A walk was going to be done today and when my walking partner woke up with a very dodgy stomach and I started throwing up before 9am it would have been the perfect way to cop out of the mountain walk. But after a magic anti-throwing up pill and an hours rest we were off to Castell de Alaro in the middle of the Tramuntana mountain range.

The walk isn’t that hard but it’s quite a steep track. As I’ve had a heart that has been off running out of control during simple going up stairs in my house, I of course was a bit worried that the heart would play up during our walk. 

The weather was beautiful! We drove up to the restaurant that is at the middle of the mountain range. From there I started my practice walk to see how my blood pump would pump. My legs felt a little wobbly but after 5 minutes I started to feel stronger. I had always said I didn’t have to feel that I needed to get to the top, just trying would be enough.

As this was Dans fourth trip to the Castell but it was his first trip actually making it up higher than the restaurant I felt it would be a mission to really walk all the way up to the top. 

I couldn’t find any of my good headgear for this outing. A scarf had been tied in to a kind of fashion, and believe you me, climbing a mountain in what did feel like a wooly hat in the 26degrees heat can not be recommended. Sweaty scalp and sweaty feet smell similar… I think it must be a similar type of skin really…

It took us 1 hour and 20 min to walk all the way up! At the top we were rewarded with the most beautiful view of the entire island! I only almost fell twice. But I managed to stay on my two legs! My phone recorded that I had walked 8,5km and climbed 42 floors! 

I’ve been told it’s not everybody’s way of getting better. That I’m pushing the limits a bit too much. But I feel like a living being again. After the walk we met up with some friends at the restaurant for their lamb chops and baked goat which is excellent!

Tomorrow I’m going to ride again, the problem with only riding for a week of every 3 it makes your skin much more sensitive and not as hardy as normally. This means I have to use Compeed plasters to be able to sit on the blisters that I manage to give myself when riding… Oh the total glamour of being me!

Keep smiling 🙂 walking up hills for thrills

It started again the day before yesterday. My good week! It’s both a blessing and a torment simultaneously. 

The extra energy, the ability to not only think and act but to drive and do easy normal things in the house. It’s the kind of wake up call you get after the previous weeks comatose state. So I say hourray!!! Until of course I realize on Sunday I am off again. Off to poison all my nasty cancer cells as well as those poor naturally quickly splitting cells that unfortunately suffers slow death during the chemo treatment.

I’ve gone all out the last couple of days trying to find out more about my “type” of cancer. Only to find not 1 other person on the help groups of cancer sufferers that are in said forums that have the same type of cancer I have… It’s too strange. I also have not heard back from the doctor that I’m under to see what her reaction to it is. In all this I’ve found that Macmillan is an excellent forum for cancer sufferers. They have great support groups for all types of cancer and I’ve had some not totally discouraging answers to some of my posts! Example: I’m turning into a fatty. Answer: So are we! (9/10 chemo fatties out there, 1 chemo slimmer but hey ho…) example 2: I feel angry and aggressive after chemo. Answer2: it’s possible it’s the combo of steroids/anti sickness/chemo and all the other drugs that constapates you with anger!

So I’m not alone! Both digitally as well as physically I have a wonderful network of friends and family that despite my outbursts of pure evilness still stick around me for more! I find that watching series on tv helps me when I’m tired. When I feel more energetic I don’t feel like I can concentrate on watching tv. I know Dan is worried that I spend too much time in front of television, but I don’t think he should worry too much as the alternative of going to bed, to me seems to much like dying. Not part taking of anything. Atleast if I’m down here in front of TV I take part of some kind of life. Pretended mostly (unless it’s the news in which case it depresses me some what).

I’ve started listening to podcasts! It’s a great way to bore me to sleep! So if I wake up in the middle of the night I find a podcast of a variety I have subscribed to, last night I was bored senseless of short stories read by Alec Baldwin, little did I know the boring short story in conjunction with the voice of Alec Baldwin could send me so rapidly back into sleep! Awesome! 

Tomorrow the sun is going to shine and I’m going up a mountain! 

Keep smiling 🙂 when the mountains in your life feel to challenging to mount, you can always turn around! New views gives you new perspective!

Good morning to you all! Well I’ll skip by all pleasantries. Just morning to all. This has become my new favorite up time. The sad thing is, I can cope with a 2 or a 3 am wake up as I can somehow get back to sleep. With the 4 am it’s complicated. I’m fully awake. Not even a little drowsy. And my alert system is at go-go-go as any little noise coming from inside or outside the house becomes a terror threat coming to destroy me. I’m not normally ever a worried person so I have no idea where this newfound “protector-of-family-very-early-in-the-morning” comes from.

I’m not sure but it could be the chemo in combination with a little bit of brain damage? Well, it’s the most awake I have been since the last chemo so I’m not complaining! Shame that my family will miss it! It’s a shame they will miss the Amazonian vigil anti protecting them from the sofa, whilst zipping mint water. All in good spirit, mind, energy, compared to the half broken angry fatty that claims said sofa for the rest of the day. She is no fun to be around. 

And I am sorry. I don’t want to complain online to all of you and pretend that makes it alright to be as angry and tired as I am. It’s unbearable to be locked inside this failing structure of a being. An artist friend compared my normal being to nuclear power in Mallorca. It has lit my recovery to try and find back to that powerful being. Sadly with a 4am price tag it’s only for me to enjoy her…

I’ve done some research into the cancer I have. You know because of “knowing your enemy”. So the sad thing is mine isn’t even a type. Here are the 4 groups:

Group 1 (luminal A). This group includes tumors that are ER positive and PR positive, but negative for HER2. Luminal A breast cancers are likely to benefit from hormone therapy and may also benefit from chemotherapy.

I’m not a group 1….

Group 2 (luminal B). This type includes tumors that are ER positive, PR negative and HER2 positive. Luminal B breast cancers are likely to benefit from chemotherapy and may benefit from hormone therapy and treatment targeted to HER2.

I’m not a group 2…

Group 3 (HER2 positive). This type includes tumors that are ER negative and PR negative, but HER2 positive. HER2 breast cancers are likely to benefit from chemotherapy and treatment targeted to HER2.

I’m not a group 3…

Group 4 (basal-like). This type, which is also called triple-negative breast cancer, includes tumors that are ER negative, PR negative and HER2 negative. Basal-like breast cancers are likely to benefit from chemotherapy.

I’m the opposite of group 4, triple-positive. But my kind has no grouping. I am now on a mission trying to find out why I’m not typed, or rather why Brenda, Brittany and Nina are not a type, this will I’m sure take another couple of research hours. I’ve googled it. And so far empty handed… I have now also emailed the crew in London to find out if they have any answers for me.

Summer arrived to Mallorca in May. With that Mosquitos. They don’t naturally like me, I must taste funny, but now they have started considering me for a meal, the chemo must have masked something unpalatable for mozzies. I am surrounded by nicer tasting (mozzies word not mine) beings so I don’t get that much eaten… The funny thing is, they are noisy beings, well at this time in the morning they are clearly sleeping, as I’m the only food that is up and not a mozzie sound anywhere.

I’ve broken one rule just writing this as its on a digital outlet, now I’m finished I am considering breaking another one as I still am not tired and I’m downstairs and the protecter in me refuses to turn on any lights for reading a book. I might watch some early morning news…. Or I’ll start downloading a new sound book… Oh the choices of life, so many!

Keep smiling 🙂 soon nuclear power will return and all be well with world! 

Back at home after 4 th chemo. This time it really has been no pick nick. Total tiredness 23 1/2 hrs every day. Close to comatose, but today I hope it’s turning. Day 5 after chemo. A little turning point.

I have not been able to do much or indeed anything since I got home. The problem is my heart rate that goes into overdrive once I do anything. Even just getting downstairs to get on the sofa is a bit of a workout for me at the moment. The soreness of my bones and joints also takes a big part of my day. It’s apparently because of the injections I take to improve my white blood cell count. Well even though it involves some suffering I guess it’s all for my well being in the end.

I’ve now done 1/2 my chemos, and I’m starting a new type of poison next time I go to the UK. You always get given the “paper work” analyzing possible side effects from the drugs you will have. After being told that I now have finished “the harder” part of my chemo, I was given the paperwork of the next chemo. Read it. Basically it contains all the previous “side effects” with 2 added ones for fun! Vision: might get impaired, foggy or you might lose it temporarily. Do not drive or use machinery if this happens! Bone soreness: this chemo will apparently give me aches without the injections. So that’s what I have to look forward to! Oh and one more! After the EC chemos weight gains I might lose all appetite! So that might be a sun on an otherwise cloudy medicine sky… Bringing me some glamorous thinness… Just don’t think it’s gonna happen. A “healthy” 3.8kg has been added to by body mass. 

The saddest thing is really my brains inability to focus. It makes me really hard to be around as I have no patience. For anyone or anything. I know that I’m not a pleasant person at this moment in time anyway, but the rage my closest family have to live through, it’s not easy on anyone. Apparently everyone in our family have gifts. We are all good at different things. Dan/ daddy is good at cycling, Myrna is good at helping out, Mel is good at looking after Millie, Millie is good at playing and apparently my gift is that I’m really good at lying of the sofa and watching TV! (Well Mel thinks I’m also good at riding horses!) 

Today we are going to Valdemossa for breakfast. It’s already past 8am and we are not all dressed yet, so we better get a move on. 

From Mel and me on the sofa.

Keep smiling 🙂 great show jumping happening in Europe this weekend!  

Thats a wonderful word isn’t it? To lie here awake pondering things. I refuse to be pondering life as it feels way to heavy. No I’m here awake pondering “things” and why they happen and what to do with them.

Chemo number 3 has been a real game changer/mind challenger/dreaded sleep enforcer. Today it’s day 19 and yesterday I still had to go to bed after lunch. We met some people at lunch and one of them lived in New Zeeland, north island. He told us there was such an abundance of things to do there the only thing you needed was energy, my immediate thought was ‘wow that’s another place I won’t see for a while’. Not that I was planning on going there any time soon, but just the idea of needing energy to do things there zapped the little energy I had. It’s so hard when you come from the opposite end on the energy scale naturally, that in combination with 3 children under 8, it’s a lot to get used to. 

At least this time I managed to control the sickness. And I still haven’t catched a cold! Both pluses in this otherwise quite negative environment. I don’t know how to grade or compare the chemos but this one was definitely the hardest one on my core as a human being.

Tomorrow I’m flying back to UK for my fourth chemo. That will be half way through! And the last chemo with the EC combination of drugs. So hopefully the following 4 chemos won’t be as energy zapping… Well here is to hoping!

The weather in Mallorca is amazing! Beautiful evening on the beach last night. The girls built a Stonehenge look alike on the beach. 

   Keep smiling 🙂 pondering makes you realize how lucky you are! 

I’ve had some awesome days! My cousins from Sweden arrived over last weekend and they went back today. We have been very busy, whenever I feel I can do anything. The problem I have is I fall asleep. All the time. Everywhere. I might have to tell my oncologist about this new sleepy me. I feel it’s even hard to sit down at a table to eat. Socializing is beyond me. Especially with more than one person at the time. Other than me not being a very good host, it has been such a pleasure having my fab cousins here! 

We have been out every morning for runs (Caroline) and bike ride (me and Ebba) as a pre-breakfast exercise! This has been followed by horse riding and all finished by 10.30am! Well that’s us finishing the riding and exercise, although I was already finished a little bit before that… The tired new me wakes up tired. Not everywhere. My brain has wake-up moments, normally around 2am-4am. Now I just plodder downstairs for a bit of research. This involves internet searches, TV scrolling or listening to a downloaded book. Alright I still have not mastered the listening to books but I have downloaded one!

After the yoga insident I have not mastered courage to go back to yoga. I was on my way today. But after dropping my cousins at the airport I decided to go home and sleep again. I never feel energized anymore. Even after eating well, sleeping enough, exercising… Let’s hope this newfound dead-ness will pass as soon we have summer here…

It’s a new deal planning my summer and the summer of my family after a medical schedule. I know after the chemo I can’t drive a car for 10-11 days. My tolerance to anyone in first 7 days is very low. My tolerance to people outside my family is next to non-existing! Other joyful glamorous traits of the chemo is my dry skin! I look like a lizard! It’s apparently “natural” during chemo. So this years summer is planned around number 5, 6, 7 and 8. That’s the numbers of my final 4 chemos and planning around the dates they fall under.

For example number 5 chemo happens on 2/6. As it’s a big one with further tests etc, I have to go there on 31/5. I then come back home on the 3/6. I will have 1-3 days of ok-ness. Then a further 7-10 days of full on comatose tiredness that possibly will intensify as the doctors have said they probably will. That leaves me with dates ~12/6-21/6 that I should feel ok enough to at least sit at a table and maybe converse with someone. So that’s almost 10 days if we are lucky. Then 22/6 I go back for chemo number 6 on 23/6, and so on.

Basically every 21 days I will travel for at least 3 days. That gives me 18 days of which I will be too tired to do anything for about 10 days… That leaves me with 8 beautiful days that I will treasure! And as my temperament really has not yet peaked to mellow loveliness, and as my planning goes into this overdrive of finding dates to do things (it’s all mathematical at the moment as I’m just doing number crunching as we won’t know how I actually will feel on said dates). This could leave you depressed as it promises me of only 24 days of summer… Luckily we live in a hot country as we are not as dependant on good summers…

Keep smiling 🙂 I’m back on a bike and back on a horse! Soon I believe I will actually be back being me!