And so, it begins…

I never imagined that at 37 years old I would be diagnosed with breast cancer. Not me! Not ever!

Thanks for joining me. I am writing this and will be updating as things happen, in the hope that all this experience will be of use to women seeking to find out how it all goes on, looking for advice on how to deal with the whole experience. I was hoping never to have to write all this but as we are here, I am happy to share it all with you.

I live in France so the whole experience will reflect the country’s own way of dealing with this. In your own country things might be different. I would love to know how it went for you at various stages. Drop me a comment on my posts and let me know.

Feel free to message me and ask anything you want. If I can give you an answer, I will, out of my own experience. If not, I will do my best to stir you into the right direction or put you in touch with people who might know more about your query. Please do not take everything I say for granted, this is my own experience. We are all different. Always seek expert advice if you aren’t certain.

 

Still here…

I haven’t written here in a while because I haven’t had the occasion to update you with news. There has been no news. No news = good news, right?

The only change since the last post was my 6 monthly full blood test which came back great. One thing that may suggest I have some thyroid issues but reading more into it looks like it’s a common thing after radiotherapy, especially if they zap you around the neck area. Which they did in my case. So we shall see at the next one in 6 months’ time.

As far as Covid is concerned, I haven’t got it, nor has anyone from my family. It is becoming more and more worrying as my son goes to school and we get an email nearly everyday telling us about new cases. Today they have even closed an entire class. Further than that, I don’t need to tell you what is going on from this point of view as it is all over the world.

So let’s talk about myself.

Here’s a pic just to show you my wonderfully long hair with my curls at the ends. It’s amazing how much it has grown in nearly 2 years. And I remember looking at other ex-patients’s hair and thinking that this length will take a lot of years. Do you like my top? (it’s homemade)

Wonderhair

General state of affairs: I am still suffering with the effects of the Taxol and Herceptin. Still got pains in my joints and muscles and still got slightly numb fingers and feet. Most of the times I am really clumsy, which is the thing that I think I hate the most from all the things I got left with. I am lacking full coordination of my hands/fingers. No idea how I manage to sew such nice things. Follow me on Instagram (#thehoneycow) to see it all. Leaving aside the self praise…

Migraines seem to have come back but maybe it’s my fault this. I have worked a lot and work is not particularly stress free so this might affect my wellbeing. And I have stopped the CBD oil for a few months. Must start that again.

My hand nails and toe nails have started to be fragile again and I have read about other people’s experiences that this is also normal after the amount of chemo that has gone through me. My oncologist did say some time ago that you have to count about 5-6 years for your body to be considered fully recovered. Here’s to the next 3 and a bit.

Promise I won’t leave the next post for the next blood tests, in 6 months’ time.

Be well, be happy, love yourselves!

It’s been a long road…

…everybody singin’…

Ok maybe not everybody knows this one but as a Star Trek fan…here’s the link, it’s a nice song.

Anyway…it has been a long road and I haven’t updated you for some time as I was waiting for more news to have a lot to write about. Since the last post on here I have become famous (2 articles in newspapers) and I saw my oncologist in August. Covid is still around in the world but you know that wherever you read from.

My 6 monthly check as mammogram, ultrasound, mri went ok, nothing to see there that needs any action taken so they have put me on yearly checks. I cannot believe that I don’t have to step into a hospital now until next summer. You wouldn’t want to anyway with covid lurking around the corner. I will still have full blood test every 6 months. But hey, feeling free for once. Life goes on without regular doctors fiddling with me.

Now for the famous part…during lockdown I have been contacted by a local newspaper (the “Charente Libre”) wishing to do an article on me about the masks and bandanas. Masks in particular as it the product of the moment all over the world. So here it is in all it’s glory, well my glory really.

Few days after that, a reporter from a local newspaper from my hometown in Romania contacted me after seeing the above on Facebook (I did show off of course) and wrote an article on the subject. “People we are proud of” was the page she put it in. Nice!

So after all the fame and glory and working my derrière off at the rate of 14-16h/day, here comes covid mark 2 and just I thought it’s slowing down a bit with orders….Bam! It’s good for the business of course and I have become an expert at juggling 2 full time jobs. I have “employed” little elves (my husband mainly) to help with the ground work. No, I am still not rich yet, no Aston Martins sitting in my garden, no château in my near future and because of covid, I cannot even buy that damn island. Ask the French state why, they are in charge of the taxes I pay.

Now for the after chemo effects…

I got left with neuropathy in my hands and feet (on the right more than on the left) and joint pains which I am told it is hormonal. My nails and skin are still suffering on and off a little bit, nothing dramatic but hey, I have hair! The rest is irrelevant. Ok, it’s not, but the hair…

My curls have stayed curly at the ends and now my hair is growing back straight, as before. I can manage a proper pony tail and all that.

The next side effect coming from neuropathy that I am not massively pleased with is the clumsiness. I drop everything, my hands are not funny coordinated. It is a bit annoying when your brain is there (sometimes) but your body can’t catch up properly. I have not found a solution to this but I am sure there are various chemicals you can take to numb things even more but I am not a fan. My stomach is already damaged from the chemotherapy so I am trying to limit the drugs.

My CBD oil journey is going ok and although it doesn’t take everything away, it takes the edge of it, which sometimes is all you need.

I remembered to update this blog as earlier on I sent the link to a very nice man I met (virtually) who is trying to create an app for support and link between patients and medical professionals. So stay tuned as it is going to be out early next year! In the meantime, live life to the fullest as we don’t know what’s around the corner, covid or otherwise. And BUY THOSE SHOES! Enjoy doing things for yourself!

The time the world stood still

I think that sometimes I am inspired. Not all the time, prove is the fact that I haven’t written on here for ages. I didn’t have much to update you with from the medical point of view. That’s good, right? I will be having the 6 months’ checks and scans in a month or so. Stay tuned. Oh, I have sinusitis at the moment but that’s no news. Oh, and I had a full blood test last week which came out all good.

In the meantime, the world has gone bonkers. Remember that a year and a half ago I started my other business, The Honey Cow? Who knew that in 2020 I would be making the most sought after product in the world? At the rates of hundreds per week…

What was the world like before all this happened? What was the world like before 2020!?

Everything was so quiet. People travelled all over the world. They visited whatever they wanted, when they wanted it. There was a feeling that everything is ours and that we can do whatever we wanted. We didn’t even think about the fact that one day our world as we know it might just stop. I always wanted everything, and at this moment in time, right now, I have everything as far as I’m concerned. And let’s not forget! We were complaining… always have, always will. People in general complain about everything. The money was not enough, the salaries were never enough, the car was not good, we threw away our clothes after two wears because the fashion has changed… We throw away too much food…

And the year 2020 has come and everything has been shaken from its foundations.

We were not allowed to walk outside. We weren’t so sure about ourselves or the ones near us.  I didn’t want everything anymore and I didn’t throw away things so easily. We had to become self sufficient and economic. We were in lockdown. We had to home-school our own children, work from home (no change there) and grow salad in the garden (the snails ate it).

From the beginning of the year, the world, the Earth, life, people, it all seems like a storm and we are not sure when and how we will come out of it. We learnt insecurity, fear, but also appreciation and contentment. We learnt to be happy with little and small things mattered more. We know we only have THE moment. We also know we can lose everything in an instant. We also know that we were so happy when we complained that we were unhappy. We had so much, when we complained that we didn’t have enough. But I could’ve told you all this 2 years ago, as it is more or less the experience that each person diagnosed with cancer goes through. You have everything, and suddenly you have nothing. And all that everything can be taken away from you in a single moment.

The social distance imposed to save our lives kills our hearts, distance from people, fear of touch. When you are a social animal, these things matter.

For me personally, not much has changed, I work from home, I don’t see many people on a regular basis, but I see the change and the sadness in others.

I was not afraid. I didn’t panic. I was not afraid that death or that disease would come. We did our best to do things right. And frankly, I went through various operations and chemo/radio so I’m not going to be beaten up by some Chinese virus. (still have a lot of toilet paper…)

When I thought not much could be worse than a global pandemic, another wave came. I think the world needs constant drama.

The US, the model of democracy, freedom and development, was shaken to its foundations with a sudden event that lead to world-wide mass gatherings. We are supposed to rebuild economy, society, lives…I don’t know what society will be built in a world that makes itself a hero and an idol of a man who threatened a pregnant woman with a gun, was a drug dealer and a prisoner. Films, music, etc are prohibited. The statue of Christopher Columbus is beheaded, or Churchill’s is desecrated in London and all in the name of freedom and democracy.

I don’t know how we will get out of 2020 – the year we crawled through, the year of the storms, the year when humanity died as to be reborn.

The world and life will certainly not be the same. When everything is over, we will not be a year older, but older with a life lesson learned differently. And for some, that was how to wash their hands or that fact that a mask is to be worn over your nose too, not only over your mouth. You don’t wear pants with your willy out, do you? (OK, maybe some do!)

But so far, we have learnt how to look at others suspiciously, and every sneeze, cough or rub of eyes will push people away.

Here’s to July, whatever that may bring. Cats landing from other planets? I’m up for that!

In the meantime, if you still haven’t got a sexy mask, you know where to go…

https://www.thehoneycow.com/

 

I’m good!

I really am, I swear! Ok, maybe a little bit bad too. I had my first appointment with the oncologist after the end of Herceptin. Short and sweet. I am good for another 6 months now. Meaning there is no change and we shall see what is going on in June, at the next scan. See…I AM good. We mostly discussed about my shop (HERE), CBD and my neck and headaches. She doesn’t seem concerned about my neck and head and we established that it was brought on by bad sleeping for a while while I was away. It has started to slowly fade now, although being at the desk working all the time, my neck is suffering. Heat seems to make it better and my oncologist said to keep putting warm things on (cats, whatever you might have around the house) and see an osteo or chiro.

I was supposed to see my surgeon at the beginning of January and I keep avoiding him. I need to book my reconstruction and tattooing. If you read this, I love you lots Mr. T, but I need a break from medical professionals, institutions and materials. A break from being fiddled with, really. 

A couple of weeks ago I started to have some nails issue where they look like the white part is getting bigger (detaching from the finger) and they are softer and softer.

I am keeping them really short because of this. Found out that it’s nail psoriasis and yes, it can be an effect of chemo. And yes, you don’t need to have it on your skin, it can happen to nail alone. Well, I didn’t have it before so… It happens in toes, too.

Goodbye pretty nails, I guess. I am currently using a nail treatment from OPI which seems ok. Started it just over a week ago so I will keep you updated.

As a hair update, I still have curls, big ones. About 15 cm in length and can tie a teeny tiny pony tail. The problem is though, in the winter, it all gets static so it is stuck to my head at the moment. And I have a bizarre fringe. No, I am not cutting any of it. Let it groooooowwww, let it grooooowwww.

Because I was not having much in the way of illness, 2 weeks ago I decided it was time to do something about it. So I get myself a laryngitis which left me with no voice for about 2 weeks. Funnily enough, it coincided with my husband throwing parties every day. Could it be the cause? Hmmm…. Anyway, it has all gone into sinusitis right now. Story of my life, I get sinusitis every winter.

We did have some very cold temperatures here lately so it isn’t good for my head. Nor for my neck. I feel that chemo has put about 20 years on my age. I have gone older and this winter is the first time I am actually feeling it properly. I even started wearing a hat. Or a beret. I love berets!

With that thought…I shall return to my piles of work and wish you all to be happy. Until next time…

Port removal – part 2

Mea culpa! I completely forgot to tell you all about the actual procedure of the port removal. So here it goes…

Firstly, although I love my surgeon deeply and I believe he is such a sweet and caring bloke, such surgery should not be done awake for most people as it is quite disturbing.

It all happened like in a normal surgery situation, got a room, got sexy outfit (see Port removal – part 1), got taken to the operating room. Damn, I didn’t keep the sexy knickers! Flat on the table, covered up like a normal op, thought “oh no, they won’t let me see anything”. And they didn’t. Now, before all this I put on a huge dollop of lidocaine cream to numb the area, as instructed. Bear in mind this does not do anything else except take the sensation off at skin level. So I was happy thinking that at least I won’t feel anything when he stabs me for the anaesthetic. Being in place though, things changed. It’s bollocks, of course! You do feel when they inject the anaesthetic and it stings and burns. My surgeon did tell me this would be the case. Anyone see the point of lidocaine cream yet? As we were chatting there about tits and bits (I love the fact that I can chat to him freely about all this – he is also my gynaecologist), he announced that he has made the cut. Same place as the cut to put it in. Of course, I didn’t feel anything else other than fiddling around, just because they were touching parts that weren’t numb. Oh and the smell. Burnt meat…my own. I am not at all phased by these things so no problem there. It’s an electric knife they use so… He kept asking me if I was ok, etc, which I was. Now, a couple of minutes later I’m told that the pipe came out. It is thin, like a phone charging cable and very soft. Mine was blue. Colours may vary, please refer to the manual. This I felt like a tiny flutter/tickle, nothing serious. Now for the not so great part. The port is sewn onto the muscle. This has to come out. It is lower under the skin, much lower than your actual cut. Have a guess. Yes, pulling, tugging, pushing, the lot. I was rather unfortunate for this thing to become part of me and my body was hanging onto it and growing around it. So there was quite a lot of struggle for it to be brought to the hole to be pulled out. He showed it to me and if you have never seen one, it’s like this…

It is made of titanium and the inside is some sort of soft rubber I think. Because he spent longer than predicted, I think, with this removal, by the time he started sewing I started to feel what he was doing. No, not a lot but the anaesthetic was wearing off. You know I am sewing, right? (have a look HERE) So it was only fair to ask him what sort of stitch he is using to sew me up. I guess they teach them sewing in medical school because it looks neat and nicely done. Self absorbing thread, of course, so nobody needs to worry about removing the stitches. All closed up, asked if I could keep the port but it wasn’t my lucky day. Got wheeled down to my room. I felt very dizzy because I didn’t eat anything that day, although such performance wasn’t necessary. Got welcomed by a huge bag of goodies. Food!!!

What you can’t see in this photo is the box of fantastic pasta salad at the bottom of the bag. And that brioche was the best I have ever had! The little pot you can see is apple puree with yoghurt on top and biscuit crumbs. A good idea actually but Apple puree is not my thing. Here in France they are big on this thing, they call it ‘compote’. Kids love it. It comes in little pots like the yoghurt, pouches or even jars.

I promised I would eat and that is how they let me get dressed and leave. Why did I think it was a good idea to wear white on that day? Of course my white top has turned yellow because of the iodine.

So, getting back, yes it hurt, what did you expect? The anaesthetic was way off by the time I got home but all in all the pain was nothing that some Paracetamol couldn’t sort out. It was mostly the discomfort and the fact that big tits tend to pull down on the skin. The hospital called me the day after to check I was ok and no dramas or bleeding have occurred during the night. Had a nurse coming every other day to change my dressing and yesterday I had the last one and got left without a plaster. Free!!! I had some bruising along the way but it healed in a few days like any other bruise would. The first pic is just after the op, second is at it’s worst from the point of view of bruising and the last one is yesterday. So, it got better quite quickly, there are two weeks between the first and the last one.

I could sleep on that side from the third day with no great pain or discomfort. The only thing that bothered me was the seatbelt over it. I had the port on the right. My wheel is on the right so the seat belt comes right over it.

Voila voila! Here’s to fewer foreign items in one’s body!

And while we’re at greetings, I wish you all a nice Christmas, don’t eat too much! And I hope you find inner peace and balance in the new year and love yourself a little bit more than this year. May whoever/whatever you believe in, be with you!

 

Port removal part 1

Waiting to go in for the taking out of the port. Here’s a pair of sexy knickers they gave me to wear. Could fit the entire hospital in them.

More details after. See you on the other side…

CBD

I wanted to write a totally separate post on this because lots of you have asked me about it and I did promise in another post that I will give more information.

Nearly 3 months ago I started taking CBD oil. I take 5 drops in the morning and 5 in the evening. No, I am lying, I actually started with 3 and 3 but went onto 5 after reading more about it. Mine is of 30% concentration, Swiss made, cold pressed, full spectrum. If you’re interested in the brand, etc., happy to provide more details, just drop me a message. (drop…oil…get it?)

What it does for me…

I am sleeping better, I sleep a whole night of 7-8h and without waking up until the morning. I am happy to wake up at 6 a.m. and get going with the daily stuff. I don’t wake up anymore stiff and in pain and hating the first thing I see. Wait, that’s cats. No, never hate cats. I have no more pain in my joints, muscles, tendons, etc. I was getting to a point when I was taking way too many pain killers just to be able to function on a daily basis. Even periods come with minimal disturbance. My general mood has improved dramatically. Even my husband has not called me a “moody cow” in a long time.

No, it does not make you “high” as most people think. Those are the marijuana and THC based drugs. Marijuana contains both THC and CBD, and these compounds have different effects. THC creates a mind-altering “high” when a person smokes it or uses it in cooking. This is because THC breaks down when we apply heat and introduce it into the body. CBD is different. Unlike THC, it is not psychoactive. This means that CBD does not change a person’s state of mind when they use it.

I believe it might be at the origin of my ovarian cyst’s disappearance as CBD is known for these effects. The ultrasound doctor was amazed when my cyst has disappeared in such a short time. Unfortunately, it has not taken away my OCD issue. (*goes to make a few more lists)

This compound tends to suppress the growth of cancer cells and promote their destruction according to some researches. When I have mentioned it to my oncologist, before I started, she said she wishes she lives the day when all doctors will be able to prescribe this freely. She mentioned that it might give me an increased appetite but this has not been the case so far. She was happy for me to try this. Another good effect that I have noticed was the increased energy levels, in the winter, in the cold. I know, when everybody goes to hibernate, I go out.

If you are considering using this, please seek advice from a medical professional before starting and for determining the best dosage for you.

To be continued…

Last week I had the 6 monthly MRI and a follow up ultrasound for the cyst on my ovaries. And so, it went….

First the ultrasound…as you might’ve guessed it was and endo as well just this time the doctor was really nice and gentle. So I asked her if they might have the vibrating version for women. You know, to get some pleasure out of this whole affair. I encountered her on the corridor a few time after, she couldn’t look at me without bursting into laughter. But now, for the results…my cyst has disappeared. Poof! Gone! I asked a couple of time if she is certain and I mentioned that I don’t doubt her medical capabilities but we are talking an over 5cm cyst in 3 months. She was sure and told me that for her there is no reason to follow up on this so I’m good to go.

Now for the MRI…there is no change since the last one 6 months ago so the doctor said she’s happy with me to do one in 6 months so, see you in June. She does want a mammo as well as a MRI next time. No, I did not get stuck to the machine with me new teeth.

So I celebrated all this with cake! I had to! I am celebrating every single smallest piece of good news as it was about b***** time to start having some good ones as well. There might’ve been half a glass of red there somewhere too. Crap, I forgot my nutritionist might read this now.

Which leaves us with the port removal operation in a couple of days. I will provide more details after it has happened.

Overall state: happy, full of energy, no significant pain anywhere – except when I am being called a pain in the a***.

I have sorted out all my teeth in a record time of 3 weeks. I did go to the dentist daily (he’s an old friend of mine) and came out able to eat.

Saw a nutritionist and already started logging everything I eat se we can figure out a menu.

Have you looked at my Etsy shop yet?

 

For this is the end…

…Hold your breath and count to ten.

No, no, I’m still here. I had the LAST Herceptin. And it was the worst I ever had. It seemed to have gotten worse and worse afterwards and this last one was the cherry on the cake. The fly on the… anyway… I also had my flu jab (carefully done by my 10yo future vet. Yes, I feel I am a cat sometimes so he has to learn somehow). Made me pretty crappy feeling (still at it) and now to top it up I have a cold. Never a dull moment!

So here’s a list of the most common side effects and what I did or did not experience. By the way, I had the injectable in the thigh version which is the sort with hyaluronic acid in it. Why couldn’t they tell me this at the beginning? I could’ve got them to inject it in more useful areas. It’s done and dusted now. Here we go:

• diarrhea – yes but only 1-2 days after the injection and a mild form of it
• redness or irritation at injection (IV) site – yeah baby! Huge red patches that I was telling you about at the beginning. Goes away easily or it doesn’t form as bad if you walk a lot 1-2 days after the injection. See more HERE
• muscle/joint/back pain – yes and a lot of it. I have though discovered something that made it better. I will explain in a separate post.
• stomach or abdominal pain – not entirely sure about this one. I did/do have these but it depends on what I eat I have noticed. 
• headaches – yes, lots of
• sleep problems (insomnia) – although Herceptin is not given with corticosteroids I did suffer from insomnia for 2-4 days/nights after. Easily ‘treatable’ with chemicals but I used as much as possible self-hypnosis.  
• nausea and vomiting – not had these 
• weight loss – bloody gain more like! And every time I mentioned it to the oncologist and the gp they both said “well, don’t expect any changes before you finish”. Hoobloodyray!
• rash – Now, I didn’t have a rash as such but the last 2-3 of them gave me some itchiness for a few days. Nothing that creams can’t handle. I am looking after my skin, see?
• altered sense of taste – who knows anymore? After the FEC/AC and Taxol which takes it all away, I did get most of the taste back but I am not sure that they came back fully. 
• mouth sores – yeah had these through Taxol and still got them every now and then. 
• loss of appetite – no loss no gain 
• tiredness – seriously? Why did they put this one amongst the last things? It is by far one of the most important ones. There have been days when I have been feeling very tired. A lot of tiredness! Still tired!

• cold symptoms such as stuffy nose, sinus pain, sneezing, or sore throat – all the way through. I ended up with a 3 months long sinusitis and a constant runny nose, blisters and sore throat. Every time after Herceptin I would have 2-3 days of coughing and sore/swollen throat. 

Don’t start thinking (like most people tell me all the time) that now all is pink and fluffy and has got unicorns riding on rainbows. “Oh you’re done with chemo, you’re fine now.” I still have issues to resolve, I still have tests and scans to do, I am still struggling with the after effects of chemo and radio. The oncologist told me for example that I have to see in 2-3 years time if I get back the feeling in my hands and feet.

With this special occasion of my last Herceptin I have also seen my oncologist, as you expect.

She seemed happy (as always) and gave me the green light to take the port out. I have made said appointment (December) and now we wait!

Next time I ‘see’ you I shall have had a second MRI, ovaries scan and port out. Let the festivities begin!

 

 

Hair isn’t everything

I can’t believe I am saying this. Before chemo when I knew my hair will go, during chemo when I had no hair, I was deeply affected by it. As you imagine, it is a big part of our lives and most women suffer a lot when it is going. Me included.

But now that it’s back (keep tuned for photos), I feel like it isn’t that a big deal. And that it is more important to feel well, to be able to not be tired 24/7 and have no pains. That matters more.

My last Herceptin is in October and needless to say I am looking forward to it. Might celebrate with cake. If my GP or oncologist are reading this…I will certainly not have cake. Cake is baaaaad for you. Please re-read this and replace cake with salad.

On the southern front I have barely any news. I went for the ultrasound a couple of weeks ago and they confirmed that indeed there is a cyst of 5cm and that it needs re scanning in 3 month’s time. Do you ever get a woman doctor doing the scan (she’s decided to do an internal one as well) and she is not very gentle and quite sharp about it? Hold on there love, it’s not a gear stick and you are certainly going into reverse on that chair you are sitting if you keep at it. I have history! Rumour has it I have launched my husband on the other side of the room while in labour. You would think that being a woman she knows how it is, but nooooo….they want revenge! Revenge! Sonographers unite!

Here it is! I can put a headband on and even hair clips. Sometimes I wear hair clips not because I have to but because I can. And before you think I look great, I did put a skin filter on, otherwise I would’ve had to rate the photo +18 for scariness. My skin is still suffering with spots and red patches.

Oh, nearly forgot to give you the biggest news! I got my first ever fine for speeding. Before you think I bought some new fancy car, no, it was my beetle and she is proud of herself! Only done 6km over the limit and I think I must’ve been overtaking. Gillet jaunes where art thou! Anyway, I must frame that! I am now officially part of the world of the outlaws.  Oh, hang on, I paid the fine. Oh well, still feeling maybe a little bit dodgy.

 

Never a dull moment

Why would I have any time for recovering and just resting? Far from me this thought. I have been having quite nasty pains in my liver and spleen area. Went to the gp after a night of lower tummy pains that made me feel like I gave birth again. No, I didn’t.

He sent me to have a CAT scan. I know dogs can’t but cats can! Anyway…amused myself there for a while, I had to do it. It comes out that my spleen and liver are ok buuuut they have found big cysts on my ovaries. Now, I have PCOS (tap on it for more info) for a long time and I know it so these come and go, or come and stay. This time they are big enough for them to worry and send me to have an ultrasound (which will happen in a couple of weeks). Meanwhile I am living in a constant state of period pains kind of thing. I have been given again a full bag of big names of painkillers and emergency morphine patches ‘just in case’. I have also ordered a big green light-up cross to put outside my house. One never knows…

Having spoken to my oncologist about it I am still uncertain of the origin of my spleen pains. I have started to pay a lot of attention to what I eat and after a few weeks of dandelion tea (disgusting) and pills I have moved onto the well known lemon in warm water on an empty stomach in the morning. I have to say I am feeling much better. Looks like a lot of it is caused by the chemo.

And while we are on that, I have to report that the Herceptin is still giving me pains in muscles and joints (oncologist thinks the joint pain is mainly hormonal though) and various other little annoyances here and there. I do, however feel very tired all the time and exceptionally clumsy. Might start using paper plates and plastic cups or schedule monthly trips to Ikea.

My hair is curly, big curls, and the humidity makes me wanna start a Jackson 5 style band. Oh wait, it’s already been done. Well, I have big curls at the moment and a length of about 8-10 cm maybe.

Have you looked at my little shop yet? Tap on the word shop!

And to finish on an appropriate note…

YOLO

Here I was driving home with my lovely lavender in my car’s vase (fresh, may I add), singing on an old Take That cd I have found in the archives, windows down (I don’t have aircon)… I felt a sting on my back. Got worse and lower down as well. I shook my t-shirt and felt something moving. I stopped the car in the middle of the road as it was getting worse and worse. Put my hazards on and got out. I couldn’t drive anymore. Bare in mind this is on a 90km/h road. I got out, got my t-shirt off and shook it. The thing was on my chair. Wasp! Dead!

Apologies to the people who drove past me…I wasn’t flashing my tits and non tits around, while performing a carefully choreographed dance in the middle of the road while shouting various cursing words…I was just trying to get rid of the beast. Yes, I was wearing a bra. Where is someone with a camera when you need them? Lost the opportunity to be filmed and put on youtube and make a lot of money out of non-tit flashing. I was in pain and if you have ever been stung by one of these things you know what I mean. It stings, it hurts (proper pain), it itches, all at the same time. I drove quickly to the pharmacy and asked them to look at my back. Got stung twice. By now it was looking big, swollen, red. No needle. Which is good apparently. They disinfected the stings, put cream on, gave me and antihistamine and said to keep an eye on it for the next couple of days. They confirmed it was a wasp because I kept the monster. Rule number 1 when something bites you – kill the beast, keep the beast!

Back to the drawing board

I guess it isn’t over, or not even close. I had my first MRI yesterday after the radiotherapy, nasty chemo etc. The left side, the chopped, came out ok with the obvious lumps and bumps that we know about because of the radio. And like I said to a friend of mine…same shit, different side. The right side is not ok. Here’s the story…

A year ago when all this started the left was on ACR 6 and the right on ACR 1. Left got the chop. Now the right is on ACR 3. This is quite a jump in only one year and I have to say I am a bit puzzled about the fact that it didn’t show on the blood tests for cancer markers. And why has it not been affected by chemo? I was told by the dr who broke the news to me that I need a mammo on the right to be double sure. I am seeing my oncologist in 2 weeks’ time at my next chemo. I am calling my surgeon on Monday and planning to see my gp on Monday as well. So I guess I am covered on all grounds here. Whoever gets me the mammo prescription first, gets my vote.

I shall leave this here for now, the contrast solution for the MRI has gotten me sick and still feeling rubbish and my mood is not too cheery at the moment. I will be back with more news as and when they develop. I guess you will be reading more medical nonsense soon. I wonder if Mrs. Doubtfire is still working…she rulz when it comes to sleeping pills. Unfortunately this time around I won’t get to see that good looking surgeon I had for the very first operation, the embolisation. If my surgeon is reading this…love you as well, really!

Not what I had planned…

I was planning this update to be boring telling you about various pains and aches and that I am still going on the Herceptin. But no….never a dull day around here. I had a migraine for 2 days when I went for my chemo yesterday. They know me happy and cheery so when they saw me with the tired face and asked me what’s going on I said I have a migraine, head in the toilet all night, slept 1h, nothing amazing. The nurse straight away called the oncologist, who decided to send me for a CAT scan “just to make sure”. I said…you mean…now…in this moment? I explained that I am someone who gets migraines all the time since I was little, for me this was nothing out of the ordinary. Oh yes, they already made the appointment, sent my papers over and all it was missing was my head in the machine. 10 mins later I was being scanned and the contrast solution pumped into my vein. I kept asking the nurse if she was sure of the fact that I didn’t wee myself – this is the sensation it gives you together with burning insides. I waited for the results and found out that my head is perfectly fine on the inside! Yes, I have it on the paper! My head is fine!

Leaving aside the fact that dogs can’t operate mri machines but cats can, and that dogs can only do lab tests, I had quite a scare. But at the end of the day I was pleased with the fact that they react seriously at the smallest thing (not that a migraine is a small thing) and do everything to reassure me and themselves. Someone told me last night…look at it this way, if there were to be anything at all anywhere else at any point, stay reassured that they will find it.

And with that thought…I have to go brush the dogs because there is a storm outside with 100km/h winds. Perfect time to brush the dogs and not have hair everywhere…it flies nicely.

1 year ago…

Today is my 1 year anniversary. 1 year since the diagnosis. 1 year since I had the dreadful news. Well, more like I discovered the news, as the radiologist didn’t think necessary to tell me. 1 year since I felt it all falling around me. So I shall spend it by putting away in a box my huge 20 cm thick folder of scans, test, etc.

Yesterday I had the meeting with the oncologist and as you know from my previous post, I had the worry about my myelocytes. She went through my blood results fast and went “yeah, all good”. So, there I was with an amazed face saying…hang on a second, love, look at my myelocytes. They are there and they aren’t supposed to be there and we both know as clever girls that we are, what that means. She said there isn’t any reason for her to worry, giving the fact that there is chemo going, that there have been lots of antibiotics put into me and an over the top dose of steroids. And to prove me wrong and to reassure me she ordered the same tests to be done there and then. Called the lab, 10 mins later I was being stabbed in various places (injection and blood) and I was to have the results in 1h. I went away and set myself up a little office to be able to work and waited for the car to bring me back. The oncologist was to call me with the results. The car was delayed so I was there when they arrived. Nothing! Nothing at all! And all the nurses were wondering why did she order blood tests. So that’s done and dusted.

Don’t get me wrong, far from me celebrating something that has changed my life completely and for ever. But, what I am happy for and is worth celebrating, is the fact that I am still here. The fact that I had a gut feeling to listen to “that mad guy” who ordered tests over test and mammograms when I went in mentioning slightly high blood pressure. So yeah, I think Happy 1 Year of my new chance at life!

 

The Myelocytes can do one!

Last post on here was mostly about me waiting for my blood results on cancer markers. They arrived on Friday night. Cancer markers came out ok, nice and low. Phew, you might say. However, what I didn’t realise is that I also had a test for Myelocytes. They are young cells of the granulocytic series (a type of white cells), occurring normally in bone marrow. They can be found in circulating blood when caused by certain diseases – leukaemia that is! I have a certain percentage of these in my blood. I have, of course, panicked, I have, of course, thought the worst. If you are ever curious to look these up, don’t! They are also present in cases of high inflammation, infection, etc. Now, giving the fact that I am still on chemo, this might be the answer. This also occurs as a result of anaemia or loss of blood. I have called my GP that night and saw him, he thinks it is because of the chemo but we shall see with the oncologist on Thursday.

At the moment I cannot accept that something else has gone tits up! (tit up, sorry) I am aware of the fact that if this is serious, I will have to wait a long time to have a definite answer. Lots of tests will have to be redone and repeated and I will have to wait for chemo to be over to see the difference. I know… This however is not good for the head. So I will have to find a way to live with the incertitude for now…as I do anyway with cancer around the corner.

 

Meh! Bof!

“Most cancers that are going to come back will do so in the first 2 years or so after treatment. After 5 years, you are even less likely to get a recurrence. For some types of cancer, after 10 years your doctor may say that you are cured.”

This is what Cancer Research says anyway.

Tomorrow I am having THE blood test. I can’t remember the code for it but it is the one which detects any cancer signs in the body. I have been thinking about it for the last few days and the fact that I have not been feeling well lately, got me even more anxious. It is getting very close to my 1 year anniversary and although I still have chemo to do until October, I seem not to shake off the feeling of living with the sword over my head all the time. I have pain in my muscles and joints and after the last two Herceptins it seems to have gone longer and more intense. I know it accumulates. My toob hurts sometimes, my muscles around it hurt. I feel inflated like before periods, except that is all over the place. Yes, that is expected. I wonder if all this could be hormonal, too. My oncologist has a lot of questions to answer.

Even though most times I am able to talk myself out of it, I can’t stop having the thought of recurrence. I am exhausted all the time (except for when they put me on steroids) and getting out of bed in the morning is a challenge. In the last couple of weeks walking has been painful, moving,  even more. I have to drug myself with Tramadol so I can function if I have to go out anywhere. The down side is that the Tramadol gives me headaches and a bit “head in the clouds” feeling. I cannot trust myself to drive anywhere like this. I am seeing my oncologist next week and I do hope that she can come up with a better pain killer.

A friend who is in the same situation was saying that she sees her hair as a bird’s nest. Well that describes mine perfectly. It is short, of course, because the Herceptin slows down the growth. I have missed the opportunity for easter to have a birds’ nest on my head as decoration. A rather serious post this time as I am in no mood for p*** taking. I am scared. I am anxious and I had chocolate tonight! I know I shouldn’t worry if there isn’t anything to worry about. And I shouldn’t worry for something I cannot control. But I am a worry-er (does that word even exist?). Every ache, every pain, every twitch and every spot…is it back? is it IT?

 

What a feeling!

No, not the song!

Do you know how to eat with your mind? No, I haven’t smoked anything. Nor have I eaten my cats’ catnip. I’ll tell you about it in a bit.

I have seen my oncologist on the wonderful occasion of my halfway Herceptin (only 9 more to go). Nothing amazing to report, all good. I am going for an MRI (as they can’t do a mammogram anymore on me) in a few months. They do these at 6 months after the end of radiotherapy. And then if all goes well, yearly ones. I will be seeing her every 6 weeks like I did so far. I am not totally pleased with the fact that the Herceptin seems to have started to accumulate and every time, the pain in my joints seems to go on for longer. I got given Paracetamol with Codeine, which is the only thing that takes the edge off it a little bit. But I don’t want to be codeine dependant. This is a bit like when we moved to France: you can’t have a bank account unless you have a French address. But you can’t rent a house unless you provide us with a bank account. As always, things CAN be done if you find the right people and they are willing to help.

But that is not all! I still have my nasty sinusitis. I still can’t get to terms  with the fact that French seem to call everything that is bad, “beautiful”. Even the ENT surgeon I saw this morning called it a “belle sinusite“. And I did say to him “trust me, mate, this is everything but belle“. I am happy that at least things are evolving and something is being done about it. I had a sinus washing/hoovering done and have to be back for 5 more sessions in the next 2 weeks. They have given me different antibiotics and other sprays and my number one drug, steroids. I hate these things with passion since I had to take them with my first chemo protocol, the FEC. I do hope they will act differently than they did back then. I will spare you of the story where I had to be put flat with my head down and various pipes shoved up my nose, to pump this special solution one side and to suck up whatever comes out the other. Hey, look at it this way, at least all these pipes went in the right end!

I had lost my smell and taste completely a few days ago and to annoy myself even more I ate a bit of onion yesterday to be 100% convinced that I can’t taste and smell anything. Although cleaning the litter trays twice a day and not smelling Pâté’s stuff should’ve been enough proof. The onion felt like apple. Which brings me to the fact that although I have been eating very little lately because of lack of taste, I realised today that I can eat with my mind. You know the taste and smells of certain things and all you have to do is remembering them when you eat. Or I keep telling myself that, before I go off eating completely.

At the moment, after 2 months of agony, I can breathe a bit (let’s not jinx it) and ohhhh….the joy, I shall have to continue with these sinus “rinsings” by myself at home twice a day but only with saline solution. They gave me a neti pot. For those of you who have never heard of this before, I will let you the pleasure of googling said device, I refuse to post porn on my blog, unless it benefits in some way.  Before you get too excited, I got the higher tech version which doesn’t look like it belongs somewhere else.

I nearly forgot to tell you all about my latest experience with the French health system. After they started to change my date of birth last year, randomly of course, they calmed down for a few months. Except in January this year they restarted it. They insist I am born the 7th of May, when my dob is the 27th (unicorns and other thoughtful gifts gratefully appreciated). I went through the same dance of having to prove when I was born. French like paper so I had to send various copies of documents – in double of course. It all changed to my normal dob. Until a few weeks ago when I discovered that they completely erased my account. I was dead for them. The woman on the phone even asked me if I was sure that I haven’t registered a death on that account. Seriously, woman??? Fast forward more papers sent to prove I was alive, my account is back…with the wrong dob again. So that made me a zombie for a while, really. Reborn but not on the right date. At this point I have declared that I admit I was born on the 7th because I couldn’t take anymore of this nonsense. I left it like that and a few days ago I had the surprise of noticing that they changed my dob to the right one! Party, you say? I think they actually appreciate me so much that they consider me a queen, you know, she has 2 dates of birth.

 

 

LISA

I said in my previous post that someone was with me all the way from the beginning and came to see me every time I was at the clinic. Her name is LISA. And LISA actually stands for L’institut du Sein d’Aquitaine. LISA is now formed at the clinic by 2 girls – a coordinator and an ex-patient. But there’s so much more than that… LISA is an NGO which helps patients with their journey. I had them with me from the beginning and not a week went by without them calling me and checking up on me and if i needed anything. An information, a phone number, a recommendation. They accompany patients from the diagnostic, through treatment and the “after-care”. And it matters so much to be able to talk to someone who has already been through it all. The purpose of this organisation is better organise and coordinate this journey, while preserving a good quality of life during and after the treatments. And although they are relatively new, from 2016, they have already teamed up with lots of professionals and institutions from the health sector.

For me, personally, it mattered a lot to have someone there whom I could call and ask for a recommendation on a health professional or simply what to do in a certain situation that seemed obvious for some but not so for others. When the social security changed my date of birth numerous times, they sent me to see the social assistant.

And if they don’t have and answer? Because I do live far from them and the recommendations would obviously come from their area… They always got back to me after researching my needs and what would be suitable and close by for me.

They came to see me every time I was in chemo. And it matters so much to have a few minutes talk to someone you already know and checks up on you.

So, THANK YOU girls! Because even though LISA is a huge lot of doctors and assistants and physios and other professionals in various areas related to cancer….LISA is you two who are there every day looking after us and making sure we have the easiest and most comfortable ride as possible.

About me…

Did I dare say in my last post on here that my trips to Bordeaux will be fewer? How silly of me! I had another Herceptin and this time it has knocked me off really badly. The pain in my joints and fatigue are worse than ever. It hurts to drive, to move, to function. Now, I have to admit I have acquired a sinusitis and pneumonia at the same time so all these together are not a good mix. Today they have just changed my antibiotics into stronger ones and got given blood tests to do and a cat scan on my sinuses. That will happen in a couple of days. It was really nice to have someone there with me. I met a girl during chemo and we stayed in touch and this time, as she is during radiotherapy, she stayed with me while I had the Herceptin. There is also someone else who comes and sees me when I am at the clinic if they are there. But about that, a different post because they deserve a post all to themselves.

 I just had to put this right here!

I had an ultrasound last week – of course in Bordeaux. This was on the toob because during radiation it has come up with lumps and bumps inside. Remember when I was telling you about cooked fat? Well, that is what it is. It is called ‘lipolysis’ and it is basically the breaking down of the fat tissue. Which I have plenty of inside there, or other areas for that matter. The fat always disappears from where you don’t want it to. Same with hair really. Grows at 100m/h in areas where you don’t want it to. And on my head…slowly does it! I managed a tiny mohican a few days ago, or as my husband called it, there’s a new dinosaur in town. I swear that if I had my head between my legs, by now I would’ve easily plaited it!

But as this is all about me…so here’s a quick look into my new venture.

https://www.etsy.com/shop/TheHoneyCow 

I shall leave this here for now. Do have a look and tell me what you think. Any other suggestions, happily received. What would’ve made you more comfortable while going through chemo?

And so…it is done!

Friday I have had my last round of radiotherapy. Thursday I had the Herceptin and the biiiiig meeting with the oncologist. She is happy, I am tired. I can have my port taken out but that is to be decided on Monday when I see my surgeon. Still got a few months before I will start feeling “better”. Even better better after October when Herceptin will be over and I might just stay away from Bordeaux for a while when it all finishes.

After the nasty part of chemo I got left with very sensitive skin on my face. I cannot go outside in the sun at all, it turns red and patchy and spotty. So they recommended sun cream. All good, except I hate the greasy feel and/or the white film it leaves on the skin. And not to mention that the 50+ ones did nothing for me. My oncologist gave me a sample of this one and after trying it, I am addicted! Avene SunsiMed! 

It doesn’t leave the skin greasy and no whiteness to it. I applied it in the morning and I went outside quite a lot that day and in the evening my face was still ok. It is water resistant and there is no smell to it. It moisturises the skin so well, I am impressed! (No, nobody pays me to advertise this stuff). Don’t get it from pharmacies and shops (toooo expensive), best order it online.

My legs are now allowed in the sun! I still have to stay away from it for a long while as far as breast, chest, neck area are concerned. Not that I would consider going topless anywhere anyway. The whole microwaved area is still a bit sore even at contact with certain fabrics so cotton is the way forward for now, which limits my wardrobe but that’s on, you cannot be both stylish and fabulous at the same time.

As far as Herceptin is concerned, still going strong with joint pains and tiredness, redness on the injection area and headaches. I even performed a migraine in the last 3-4 days but I have discovered that was because of the period. And as you know I don’t do things in halves, my first period after the chemo lasted 2,5 weeks and after 5 days break, it is back. The oncologist is happy with this and said that for a few months it will be all over the place. (shoves more cake in her mouth) Except the pain is greater now and it feels like this!

And to make a Sunday exciting, we have ‘saved’ a couple of dogs today. My husband found them on his way out and called me, got back home with a car full! I say full because it was a border collie and a newfoundland. These guys were taking the entire back seats area of the car (a land rover). The poor border collie was a bit squashed by the newfie who loved being driven around with the window open! After various visits and phone calls I have found the owners and they will be back safely this afternoon.

 

 

Best invention since the wheel

And here it is! If you are going through radiotherapy and have a rough time with your skin, I suggest you ask your oncologist or radiologist for a prescription of these. I was told about them by a lady I met in the waiting room at the clinic. I mentioned it to my radiologist and she loved the fact that people help others with useful information. So if you find something that works for you, do share with others, you never know who might benefit.

So here they are, huge box as they are 20×20 cm but they come in other sizes. I do have a large area to cover. You can, however, cut them. They are like patches but gel-like, they do not stick to the skin but stay in place ok if you don’t move much. Put them in the fridge for a bit before using them for an extra nice soothing effect. You can, in fact, put in the fridge any cream before applying it. My skin is turning into leather in certain areas, so this is helping me a lot. And I only used them for a day so far. I also have dark shadows on my skin where the radiation goes. I was under the impression that being Romanian I just don’t ‘do’ shadows. Oh well…

Did I mention that tomorrow I am only one week away from the end of the radiotherapy? ~Does a tiny happy dance~

Last week I had a big blood test with everything and besides the red cells and platelets being low as expected, only the vitamin D was low. This is a bit of an issue of course because I cannot be in the sun. But I am sure they will give me something to add to my increasingly huge drugs box.

As far as hair is concerned, I now have eyebrows and short eyelashes. Some curly, some half white, half black. Hair on my head is stuck on and looks fairly straight and dark so far. Legs and other areas growing at normal rates!

 

That sums it up nicely

Woah! We’re half way there…Woah…

You have to admit you sang this when you saw the title. As much as I would like to say I was half way there to Jon Bon Jovi, it is only radiotherapy that I am half way there with. Actually nah…he is too short for me. I’ll stick with my normal Jon.

 So 14 out of 28 done and I can smell bacon. It has fried my fat inside the toob. Bacon, I tell ya! I have hard areas that are slightly sore when pressed. Other than that, red skin that seems to have to reaction to the Ialuset – the cream they give you for it. Cold patches seem to help with relieving the hotness temporarily.

I also have a sore throat and a cough, I am told it is normal. I got given this gel which does nothing for me.

It s thick and red. Ok, it can be luminous green as far as I am concerned but the thickness bothers me. It isn’t easy to swallow. And the fact that it doesn’t help. Don’t get it. 6€ badly spent. So more to add to my bottomless box of drugs. You get more relief from the lidocaine Strepsils. Anybody…anything from my box? Half price. Buy one get one free?

Now for the pleasant part…I have hairs in my nose! It’s the little things… Not as sticky anymore when you squeeze your nose or wipe it. For the radiotherapy, being done with gating technique, I have to pinch my nose with a hook so now it is actually a bit better.

And my eyebrows have started to grow. I actually had my first eyebrow plucking session. The way I see it, it is a formatting of the eyebrows, never managed a proper shape so now I get the chance to reshape! Starting fresh!

Since my last post on here I had another Herceptin which caused the same reaction on my leg like the previous one. I am told it is an allergic reaction and as long it doesn’t swell or hurt or doesn’t go away, it’s all grand! The difference is, this time I knew what I had to do. Walk it off. The more you move, the faster it goes away. It still causes joint pains, back aches and tummy issues but overall probably better than the last ones. Now, my back is also hurting because I am sat in a car for 3 hours every day on the way to the hospital. I have gone through about 8 books in the last 2 weeks. I am reading 2 books at the same time at the moment. I have discovered I cannot read in the car because it brings motion sickness but I read a lot while waiting at the hospital. Any suggestions of new stuff to read, gratefully appreciated.

I also had another heart scan and and ECG and were both normal. I am puzzled though…all the cardiologists I have seen were men in their mid/late 30s. And good looking! And I have seen quite a few and at different hospitals. I am sure there is some chat-up line there somewhere between them cardiologists…heart doctor…attractive… Where are all the old ones? Do they not get to an old age? Do cardiologists die young? Are they aliens?

The other new discovery I have made this week was this spray. I got given a sample at the hospital. I have lived for the last few months on samples, I am not joking. The amount of pouches, bags, samples of oils, creams and sprays they give you is amazing. This spray has a vitamin E oil inside. Left the photo big for you so you can see it better. It is supposed to be a body spray but I have used it for my hands and feet. I never really had a huge issue with the skin on my body. I did use a lot of cream though. And I still have dry feet, hands, mouth and generally dry skin on my face. I love the fact that it goes into your skin straight away and there is no greasy residue. And also that it doesn’t smell like much. There is a slight smell to it but not perfume.

Everybody now….

We’ve got each other and that’s a lot for love
We’ll give it a shot!

Woah….

 

Story of my days

Radiotherapy week 1

Remember when I started this that I wanted to at least glow in the dark or have some super powers? No, still waiting… However, I must be developing some sort of super powers as I seem to be the only one seeing things that need picking up or tidied up.

We are now at one week’s worth of radiotherapy with gating technique. I have gotten quite good at this breathing thing so it is getting faster each time. Each session lasts around 15 mins. They have to stop and draw on you before each time they move the machine in a different position. I have 2 guys that do my radio all the time.

They are so sweet but they do have one huge flaw – cold hands! Now let me tell you, they are very young, around late 20s I guess, so I can make jokes with them easily. I did tell them the other day that working in this job they have you cannot simply turn up with cold hands. So I don’t know where they stick them but they need to warm their hands up.  Moving on…the felt pen! Ok, they are drawing on me every day and every day I have to take a shower because the cream I put on after each session has to be taken off for the next one. The felt pen however…the green one comes off but the black and the blue ones not so easily. First world problems, I know. From the point of view of the skin, all good so far. I got given a cream to put on every day. I feel the area very hot straight after and it lasts a few hours. There is no pain or not much. My breast has gone a bit bigger, hotter and harder. (Extract from the 50 shades of radio)

The thing that tires me the most is the journey. The journey to radio is 1,5h each way. And yes, I am doing it every day. I am not the one driving luckily but nevertheless it is rather tiring. I sleep a lot and I amaze myself as I am not a big sleeper normally.

Did you know that if you get radiotherapy on an armpit with hair or hair in the proximity, this will make the hair disappear for good? Now this if useful, however I will end up with one hairy armpit and one bald one. Also, started to have a sore throat but I am told this is normal as they are radiating my lymph nodes in my chest/bottom throat area.

Tests and scans

You know when you go to an appointment and they ask you for previous results, scans, etc? Well, I feel like this…

Trastuzumab and lump update

Call me weird but this is what i see when i hear this name. And yet, it is only the name for Herceptin. So now I am only on Herceptin, let me tell you, it is not all rainbows and unicorns. Ok, a bit of a unicorn moment as the injection goes in my thigh and it doesn’t hurt much.

But afterwards, I find myself with this…

The size of this is about 15 cm in diameter and all normal apparently. At the injection time, obviously blood pressure being taken before and after. And also 30 mins after the injection. So all in all much quicker than going in the port. Now for the after effects, no, still no rainbows and unicorns. I have bad joint, bone and muscle pains and the most intense moments seem to be the first night after the injection and the 3-4 nights after. Top tip: walking helped this redness go away a bit (thanks Lindsay and Sophie). I also found myself with dizziness and nausea but these might have a second cause as last night the gp told me I have sinusitis and ear infection. Of course in both ears, I don’t do things half way. So for that I am on antibiotics and various drops and sprays.

Which brings me to lump update. Do you remember the lump post (click on the name)? Well, after the ultrasound coming with necrosis, I had a meeting with the surgeon yesterday and it was smashing! Yes, literally smashing. He was as puzzled as I was regarding the causes of this and he said it isn’t something that he has never seen before. Of course I haven’t hurt myself or banged it in something. So he said it is a necrosis with a haematoma on top. I told you I am not doing things half, best get it all. So decided to do a puncture (like a biopsy) to see what comes out. 150ml of liquid and a lot of squeezing and pushing later he was happy so I am told to keep disinfecting the area if more stuff comes out and my husband is told to expect “big splashings” in the night at some point as more might accumulate. Not the splashings my husband would’ve hoped for in the night. I now have a hole  where the lump was and tomorrow I am starting radiotherapy. *Goes to eat a few pancakes that my lovely friend brought over.

 

 

A new lump…

I might as well tell you this now as it can occur to anybody at any time. A few days ago I have discovered a lump in the reconstructed breast. The skin around it is red and slightly puffy. So of course I panicked, of course that the first thing in my head was “is it back?”. When I went to the clinic for the marking for radiotherapy two days ago, I have asked and flashed my toob in front of everybody who could’ve given me an opinion. The doctor and a few nurses agreed it was a haematoma. First thing I thought was, hang on a second I didn’t hurt it, bang it, etc. Apparently it is normal and these things appear. They said things can go tits up at any point, even years after the operation. (tits up, got it?) Now, before that, I have of course contacted my surgeon, my first point of contact regarding anything to do with toob. Last night he called me and reassured me it can’t be anything bad. He said though it might be fat necrosis. Now this is of course different from what they said at the clinic. I left the clinic two days ago with a prescription for an ultrasound and I have now book said exam for next Friday. A week of waiting isn’t anybody’s preference when it comes to these things.

Of course I went and researched on the internet all to do with necrosis and haematoma and of course the results scare the crap out of me. I think I am most likely in line for yet another biopsy. The breast, i remind you is full of fat, not breast tissue so what on earth is a lump doing there? And long term, how is this likely to evolve? My surgeon wasn’t too worried and said we shall see at the meeting we already have on the 14th. I am now at the picture taking stage, every day, so see the evolution of this thing.

 

…aaaannnnnd breathe!

Since my last post here I had various appointments for radiotherapy marking, tattooing etc. They have decided that it would be better for me to do it in a state of breath holding technique. It all looks and feels like snorkelling – actually called ‘gating’. I went and trained for this respiration technique a week ago. You are laying on the scanner table, arms above your head, head turned on the side. You hold a big plastic mouth guard (in your mouth funnily enough) which is connected to a tube. Your nose is pinched by a foamy device (useful to keep afterwards for snoring husbands). And of course the goggles. You are wearing goggles and inside you see the same thing they see on the monitor, which is your breath going up and down. I won’t bore you anymore with how it should be between the lines etc. It is a cool technique at the end of the day that allows them to radiate your breast without touching the heart. I asked, and having films or video games in these goggles isn’t an option. By the way, I can hold my breath for 1 minute. I am told the whole procedure will have me holding it for 30-40 seconds at a time so it seems doable. It looks a bit like this…(this is not me, this woman has hair)

Tomorrow I am going for another scan so they can tattoo me. The cool part is that the marks can be either black, either invisible. Which can only be seen with a purple uv light. I will of course go for the transparent version. Again, having cat ears on the dots or flowers tattooed around them, not an option.

I was informed that I will not be allowed in the sun for 2 years, have to cover up from neck to waist. Any cream that you put on after radiotherapy has to be removed before the next session. I will update the post as and when I will remember more. It all starts on the 16th of January and ends ont he 22nd of February. I am lucky to have a lovely team, from my oncologist who is the loveliest person ever, to the radiotherapist which again is such a nice girl and to Nicolas and Sabrina the radio nurses. If I have learnt something through all this, it was that it is so important to have faith in your team and to fully trust them. And so far, everybody was so nice. In the meantime I am continuing with the Herceptin every three weeks. Except from now on it will go in my thigh. Why are we keeping the port then?

Oh, and Happy New Year to everybody! I wish you all what I wish myself.