Yesterday when I met the hairdresser and asked him about wigs and where to get one from, he advised me to cut the hair short before chemo as it wouldn’t be so dramatically noticible and such a sharp change for me. As I have been growing my hair for a while, it doesn’t really fit into my 2015 plan at all, well very little of this does to be honest with you.

He gave me his card and told me to give him a call and he would fit me in today even though he was quite busy. I decided to bite the bullet and book in for a short hair cut and was booked in for a 4pm trim.

The morning started with a meeting at LOC headquarter. This is on Harley Street. Today I had a meeting with a chemo-nurse. I got an hour monologue about what would/could/might happen to me whilst having chemo. It finished off with a walk down the dungeon of dread… Or at least the treatment room where people were lined up, plugged into drips, iced hatted to the max.

Here they all had wifi, and all the patients seamed pretty calm just getting on with their lives, there wasn’t any of the death dripping fear I was anticipating to feel. It wasn’t a joyful place, but I could feel it had a purpose. Here some serious cancer killing was going down. Tomorrow I would be a part of it. Apparently they do have a chef on-site. I find that a little strange as the number one complication of the chemo is sickness… Well hey ho, if I don’t feel like throwing up there will be someone that can cook for me!

After the dungeon I was recommended to go to Selfridges to try on a wig. I got another pack of information about where I could get someone to help me fit a wig. 

I tried a couple of wigs on and realized 2 things:

I look better as a wigged blond. The brown makes me look about 60 years old.

New wigs make your head look coned shaped… This they say will alter after you wear the wig a few times. It’s hard to spend close to €300 on something you don’t like the look of. I think I will wait to get the advise from a proper wig fitter.

At 4pm I went to the hairdresser in Mayfair. It’s called MichelJohn. Max the hairdresser was there and I gave him free reins on doing what he liked with my hair. It got very short. But I think he nailed it. I look a little fierce, but in a good classical fierce way. When I went to pay they told me he didn’t want anything. He did it for free! I’m not an overly emotional person, but that service of un-expected act of decent kindness nearly got me to tears. It’s Max’s birthday tomorrow. Same day as my first chemo day and he joked about us having equally “bad” day tomorrow. Ah well I guess we have to make the best of it.

I can recommend anyone that needs a “makeover” to go to Max at MichelJohns in Mayfair! What an awesome hairdresser! When I was there the entire team came up with ideas of how to make the chemo more bearable. Wig makers, make up artists and eyebrow tattoo-ists… They knew everyone and gave me all the phone numbers to all specialists in their area.

I don’t know how I’ll feel on Thursday and Friday but I have booked in to see people. They just have to keep an open mind about me being tired and nauseous.

I hope tonight will be a night of sleep and not another night of creation!

Keep smiling 🙂 sometimes we come across people that shift our worlds with ever so slightly gentleness.

If you come from a normal active life and get thrown into the world of cancer it has an abundance of strange things happen to you. If you on the other hand come from a “normal ” super active riding/family of 3 young girls/in the process of building and changing your house around/having an operation to change your vision from double back down to single, I’m sure the affect of this transformation is almost abstractly distasteful.

I cannot believe only 2 weeks ago I was back at home riding and just getting ready to have my eye operation. I had already had the news about the cancer living inside me but it does take time to sink in, especially as I’ve had other things to think about. As a natural procedure after any General anasthetic I have taken it easy to heal from the first op (read fabulous patient that has not even once done a thing to upset any healing process). Ok, in that process I’ve travelled over Europe a couple of times, also maybe either lived in a building suite, a hotel or as a guest in my in-laws, or my sisters. We haven’t probably sported a “normal” home life since October really… Poor kids! But I shouldn’t ramble so much, the biggest change is how little physical activity I have manged to do in the last 16 days compared to what I am used to. 

I wear a Jawbone. It’s a bracelet that you wear and it follows up on every step you make/day. It can also monitor your sleep pattern/quality of sleep/overall activity/calories burned per day. It’s quite a fancy little tool. You can use it to wake up or just remind you to move if you have been still for too long. My Jawbone broke just before all of this mess started but I’ve had a replacement sent out for it. As I lie awake at night, probably not able to sleep for an abundance of things, I now decided to check the app on the difference in activity…

I shouldn’t have done that. On the 3/2 was the last day my Jawbone was working. I averaged 130% of activity every day (I had chosen a 10.000 steps/day as my goal). My sleep pattern was up in the 93% (here I had chosen a 7.5hrs as my optimal sleep/night) at the moment my “average” activity is down to between 25%-70% and my sleep pattern is down to an average of 50-65%. Well I can now understand how I feel so doublely different… 

I will now instead of complaining of this newfound ability to be awake in the middle of the night, be thankful for it, this is a time to be creative!

Yesterday I had my last meeting with the oncologist before the start of the chemo. She confirmed the cancer I have is the “hormone sensitive invasive HER2+”. It’s apparently a bit unusual but in the same way, useable because fabulous drugs have been developed against it. I will start the EC face of my Chemo on Wednesday and for 4 times every 3d week I will have the EC dripping through my “port-a-cath”. 

• epirubicin
• cyclophosphamide.

That’s what EC stands for. For any of you that like to google fun facts about things you hear about, one of the most “active” side effects from EC is the feeling of sickness. But I am not to worry about this apparently as anti-sickness pills will be fed to me before, during and after the procedure…

Oh Google… I think sometimes life would be easier without you! Now we can learn so much, new things that we didn’t fear before, just by a click by a button, or in my case a slide of my fingertip on a phone screen. I didn’t realise I have a fear of feeling sick. I think I got over that whilst being pregnant. I think possibly the creativeness of my mind during these wolf hours gets a little over active…

I went to a hair salon today to ask about possible wig fitting. They were so helpful! The creative director of the salon was called Max and he said I should cut my hair short before the chemo, so that if it all came out it wouldn’t be such a drastic change for me. My oncologist agreed with him, but on a more practical level, -“then you don’t have to clear the shower drain from all your hair..”

Keep smiling 🙂 tomorrow I am trying on a new style! My friend Ian recommended an Afro?!?

Most people have a day of rest and recovery after a general anesthetic. I’m not most people. Instead I took a train up to Middle East England to look at some young new talent. Young new talent having four legs and an ability to jump huge courses! Horses of course! I didn’t ride, luckily I had my lovely rider/extra sister/family member Julie driving all the way down from Blackpool to the East Midlands of rainy grayness.

Today I feel a little bit stiff. My skin tone is still a hint of greyish blue, but in the hole while I’m almost ok. I have a strict exercise regime I have to do 3-4 times/day. A 2 hour train journey might not have been everyone’s top tip for recovery but it’s been a-ok!

We have seen some lovely horses and also helping some a little bit sore and just touching the bodies of the hairy beasts has given me so much energy. It’s not just being around animals, but horses in particular gives me such strength. I almost started re-alining a horses neck and wither but I actually managed to stop myself as I’m not allowed to lift anything heavy for another 2 weeks. But grownup point for me for remembering!

Tomorrow I am looking forward to a meeting with my main doctor, doctor Jones! We will go through all the ins and outs of my coming treatments and book a plan for the day I will have as my “chemo day”. I have to go through my calendar tonight to see when works the best for tired days and days not to travel etc. As you might have gathered I am not very good at doing not a lot. I suck at taking it “easy” and even though I with this new tiredness won’t be able to not take it “easy” I find the mental block of slowing down is going to be my biggest hinder. I’ve tried visualizing myself sitting down, in the shade somewhere, wind gently blowing, maybe a small pet rolled up to me breathing comfortly, gently moving very little, gazing up through the trees… And then I hear an inwards whistle! It’s blowing so hard and loud me and my pretend pet friend wake up and stand up! We shake and feel forced to run to move to get out of there!!! All this is clearly just in my head. After all it’s just a visualization game… But I am just not very good at it.

The tiredness I have in my life even after the TBI (traumatic brain injury) I have after I’ve been doing physical activities. It’s very hard to understand how to relax and take it easy if you haven’t done anything. Well this is me worrying over things that I have no decision making prowess over. What will happen after and with chemo will happen and I will deal with it when it comes.

Keep smiling 🙂 if you happen to sit next to a miserable Swedish person on the train that won’t allow you to talk, just write a blog and make him wonder why you smile at him whilst writing!

A Saturday in central London. The weather is glorious! So much to see and do, but for me hospital and nil-by-mouth since 6am.

It was started last night. Meetings with the breast nurse and injection at the nuclear clinic. I then prepared myself with an early dinner and bed.

I went in this morning and all was well. The pre registrations nurses jobs had all been done by my super efficient Breast nurses. The meeting with the anaesthetist went well and the surgeon came and went through the operation with me and my mum who in my mind was confident they were going to do a good job. The radiologist surgeon also swung by and he had been introduced to me as the surgeon with the unpronounceable name. I was just to call him “G”. “G” did tell me his full name but it was rather hard to remember so with the aftermath of my general anesthetic, I claim bad memory memory history and lots going on… It wasn’t that hard to pronounce, just impossible to remember. He was the specialist on fitting the “port-a-cath”.

I was told what would happen. Lymph node taken out. They would follow the radioactive fluid injected under my nipple last night (for you Nina), how it made its way to the connecting lymph node. And they would only take that node out, have it dissected and check for cancer cells in it. They would also inject a smurf color tint around and under the nipple. It should also color the “tubes” in the breast. It’s apparently quite important to know the difference of tissue and the “tubes”. My nipple would keep the smurf color for the next couple of months (!!!!) and the rest of my skin would turn a lite hint of green/light blue/grey for the next couple of days…

They would then let Mr “G” take over and fit the “port-a-cath” on my left side.

I signed all the papers involved swearing hospital off any meaningful responsibility if anything was to go wrong.

I had been warned off things that could happen. I could get headache, nausea, dizziness, bowls not working, bleeding, pain etc but the one thing I might get is a skinreaction. Scaley skin! It was very unusual but I was thinking scaley skin might go great with the blue tune of my skin! I never had seen myself as a scaley smurf before but hey-ho, it might go well with pink?!?

Everything went according to plan. Not a scale in sight. No nausea, headache or other bad things so far… I feel incredibly well for someone who has had 2 General anaesthetist in less than 10 days…

I bought my first Macmillan key ring yesterday. It’s a metal one with two lovebirds kissing,  it’s pink and almost looks like a heart. It will make a wonderful, meaningful present or it could possibly be used for my car key?! Either way with all my new library and the Macmillans being behind a good bit of it I thought some support their way should not be a bad one. 

Maybe I have to make another festival or something along those lines but either pair up Headway with Macmillan or do 2 events? If you are as me a very unfortunate person gifted with these ailments you just have to work twice as hard I having fun whilst opening the “unsee-ers” eyes to what goes on in your life!

The chemo has been forwarded to Wednesday! Meetings with oncologist, specialists, breast nurses etc booked in for Monday and Tuesday. A full week of wonders ahead!

I love the fact I have such a strong support and network of wonderful friends and people willing to share their time for not only me but for my whole family.

March is apparently a female friendly month with the 8/3 as International Woman’s Day. Let’s hope there is power to be had from that!

Now I will try and sleep in the city that ROCKS! It’s a Saturday night with all the wonders and sounds unfamiliar to a Swedish country girl from Mallorca.

Keep smiling 🙂 There are so many beautiful things and people around you. Let them in and touch your soul. Even just a little company for any force fed soul of digital media (sorry blog) can create wonderful new wings for tired spirits. 

Today I will yet again be luminous. Not because of my natural inner glow some people possess but from radioactive colored fluid that will get pumped into my tumor. This will make it possible for the surgeon to find what lymph node is connected to remove the right one! It’s all new science to me and you have to learn it all and so quickly.

I had a lovely online chat to an old friend of mine who is a doctor. She works with children and with them she finds it useful to name the tumors. I had 2 official tumors from the contrast MRI but the radiologist here in London found a third little one hiding behind my nipple. So the biggest tumor she named Brenda. It’s tail she named Brittany. The hiding mysterious one she called Nina. I had such a laugh and it’s true naming them helps! They now have personalities and as I’m not allowed to get to fond of them as we are now trying to kill them. I think the motto “know your enemy” comes handy.

Tomorrow I have the removal of the lymph node. They are also going to put in a “port-a-cath”. It’s an inplantable venous access system. It means that they don’t have to go through my arm veins to administer the chemo. 

In Swedish the translation of chemo is “cell-poison” which even though it’s a bit harsher is truer.

The chemo will start next Thursday. And then for the next six months every third Thursday I will have a chemo day. I will try and add something else to this day to make it more bearable, survivable, I’m not going to stretch to enjoyable but you get my thinking…

I’ve had 2 breast nurses appointed to me. They are fabulous and have all sort of beautiful information packs for any question I might have! During all the meetings with surgeons/anethiatists/oncologists they are there offering their support and helping hand. Not both at the same time but always one of them. I now have a library of information, all from books written to make children understand cancer a little bit better to the technologal super wonder tools as the “port-a-cath”. The way flying happens nowadays I need to book another 2 luggage to my Ryan air or Easyjet going home. My new library will need it!

Part of the library is a booklet called “advise and support if you lose your hair”. Well that’s some joyful reading for you! Many people say nowadays you don’t lose your hair “that much” on chemo. I guess they don’t have the same cancer as I have. In the following 5 booklets of the different chemo drugs I will have its not a matter of “if” it’s more a statement of “when” you lose your hair. We have discussed this with the nurses and doctors. There is an ice-bucket challenge for real that you can use to defend your hair follicles. But instead of the second of iced water running off you the ice bucket will be on your head 30 minutes before chemo starts, it will take between 40-180 minutes depending on what drugs will be inserted, and then you have to leave it on for a further 2 hours afterwards to keep follicles cool. By this time I think brain-freeze will have a new meaning.

At least at yesterday’s meeting good news! The 3 tumors are all related! This means they will all respond to the same treatment. Even sneaky Nina which I knew they were a bit worried about. My CT scan came back clear and my neurologist (because of the TBI I get one of those as well) saw no reason for the treatment not to go ahead. He stated as I already suffer from tiredness, the fatigue might be a little stronger for me. But he was quite impressed by my so far recovery, and managed to book me in with a psychiatrist when I’m here. To get me to work on techniques of how to slow down my temper… I do have a fairly short fuse… As I’m sure my poor family have suffered with the last couple of years.

Lots to take in and lots to learn. Dan went back to the kids today and my mother is flying in to chaperone me. I will now be in London until next Sunday when I’m allowed to fly! So any suggestions on good movies to see, places to eat, art exhibitions not missable. Well as I’m in London I might just as well be a little tourist about it! 

Keep smiling 🙂 don’t worry about anything, Irish saying; you are either gonna live or you gonna die. If you live don’t worry and if you gonna die you’ll meet so many old friends that you don’t have time to worry!

I have now started on my treatment

I’m in London. Harley Street has the best of european medical people so I am in good hands. This week is mostly about more tests and trials to get to know what I’m up against.

The sad thing is that even though I know all the tests are for my benefit, after 5 hours of probing and testing I am tired to a point of disbelief. I think it’s always better to know what you are up against. If you are supposed to face 15 injections I’d rather think I’m about to face 16 injections just to have that little bonus of finishing one early! I think everybody faces pain and problems differently. My way of the “head on approach”, is probably a little unusual for “normal” patients, but for me it’s crucial! 

For me the day was almost over after contrast MRI’s of both brain and chest. A “small” meeting with the surgeon had been booked on to the end of my day. I thought it was only going to discuss Saturday’s operation so I went there tired, calm, collected. I had already had all my days worth of nasty needles and pushing parts of my body down narrow pathways for probing and scanning.

The 5pm appointment finished in a “fitting” of 3 “markers” in suspected “areas”. 6 more biopcies. I have not yet gone in to what a biopcy involves. Think knitting needle size needle and hammer. Think noise. Think apparatus looking like things from a German torture chamber. Sophisticated, strong, but clearly from the 1940’s. There is little pain involved thanks to anasthetics. The pain is actually more involving the anasthetic being put in.

Anyway now I’ve been through this impressive act of tissue taking from underarm and chest. And my thoughts are with all the men with suspected cancer in their neither regions… Or with the doctors collecting said tissue samples… I guess the same probing and hammering of knitting needles would be done in a mans private area… Ouch!

To be honest with you I thought I knew what being a patient involved. I’d like to see myself as a “client”. Clearly involved in whatever process will be thrown at me. Adult like response and choice of said treatments. Here I’m like a 5 year old child again. It’s possibly because of the enormity of this new problem. Possibly that I couldn’t imagine being an animal for testing… Maybe I’ve just gone around this the wrong way. The TBI that was thrown upon me kind of sneaked up on me, clearly not on my family but as I was in a coma I wasn’t aware of what was happening to me. Now I’m part of the “action plan of attack” and maybe I just need a little time to adapt. I’m sure I’ll be a great patient/client given time…

Keep smiling 🙂 it might be 4 o’clock in the morning but you feel inspired and creative enough to get up and get going!

Here I might add I should put something about the eye operation I had 5 days ago. 

A ground breaking, muscle cutting eye operation. I went under a general anasthetic, the op was fairly straight forward and vision should get better. Less double but not 100%. But at least I should no longer suffer so much with double vision when I get tired. 

The sad truth is that even though I’ve had the op. It went ok. I’m now back at home. I had some really bad news before I left for England. The kind of news you never would like to get, not that I’ve not had my share of bad news in the past couple of years. I’ve been diagnosed with cancer. And the tumor according to the Spanish doctor had to come out as soon as possible. Luckily my husband is one of a kind and as we already were in London he arranged meetings with specialists in Harley Street. They suggested a chemo to shrink the tumor before removing it, this would make it possible to just remove the tumour rather than all of my chest.

I’ve had to be careful in who I tell this new news. People are more sensitive than me. They break down. Sometimes in front of me. It’s not that great. And I can relate to their fury and feeling of disbelief. Of course I’m right in the middle of it all. Again. It’s like I’m looking to be the centre of attention. Well again I think I’ve managed it. If not in a coma/mother of 3 girls under 7/ half broken/ now riddled by cancer. 

It’s ok, I’m gonna beat this as I am sure to conquer all other nasty things thrown my way. I’ve now managed to break the news to my fabulous 3 daughters. Tonight I’m traveling back to England again. To start my chemo and other tests. It’s not what I had hoped for. I thought 2015 for me would be a year to start jumping again.

Maybe 2015 instead will be a year of finally getting some insight into how I should become a better person. A more tolerant person. Someone who can stand up to all this agony and evil and laugh at it……. Maybe someone slightly insane……. That could be me!

Keep smiling 🙂 it will make the wicked of the world wonder.