…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.

3 days before chemo 1

You have here a link of a tiny documentary about fasting. It includes cancer related sections and chemo in particular. It is in French and there are lots of studies in English as well, should you wish to look into it further. I am willing to try and do it as I am now 3 days before the first chemo session and if it would only take away the nausea I think it is worth it. Bad part is I already had a coffee this morning but that is it so we shall start from this point on. I have been given the Emend kit to tackle nausea during chemo so I am hoping the two together will help.

“Chemotherapy can expose patients to toxic side effects such as heart damage and a reduction in the production of blood cells. Fasting protects normal cells from the toxic effects of chemotherapy while sensitizing cancer cells to the treatment. Normal cells deprived of nutrients during fasting enter a dormant state, whereas cancer cells attempt to keep growing and dividing, exposing them to treatment.

It has been suggested that a schedule of fasting two days before, during the day of, and one day after chemotherapy would enhance its treatment effects while providing protection against toxic side effects. However, fasting during chemotherapy should only be undertaken with the guidance and supervision of your oncology team.” (more here)

I am going into this with relatively good levels on most blood tests and shall be updating as I get the others, every 3 weeks, so before each chemo session.

12,1  on haemoglobin

5 on leukocytes

277 on platelets

Now for me this is good considering I have an anaemia and as you have read on previous posts I struggled with the haemoglobin while in hospital and even after. I am taking iron pills at the moment and they are hurting my stomach so the oncologist proposed that they should do me an iron IV shot while at the chemo.

On the general feel side…I can’t sleep properly, always on my back of course and it isn’t comfortable. It is a mechanical problem. I can of course take Xanax and off I go dreaming about cats and dogs running happily on green fields full of flowers and rainbows in the sky. But I will still be on my back. I have read that it takes time and the wait for side sleeping is between 4-6 months. I have mastered a semi side for a few minutes. It involves massive amount of cushions and pillows strategically positioned. I tried going to sleep later and later (by force of binge Netflix watching) hoping I will be tired that I won’t wake up at 1-2 am for my nightly walk. Did I not tell you about my 1am walk? I have to do it to release the blockage in my back muscles that occurs after laying ON MY BACK for so long in bed. Did I mention it is on my back that I have to sleep all the time? (accumulated frustration here…goes off to light up some incense sticks)

Bone scintigraphy

This is how one looks like. Pretty cool I’d say to see yourself in skeleton form. I look really angry there because the whole thing is done by lowering a huge metal plate above you, and I mean really really close to your face. The plate obviously moves down to scan your body but the face bit I didn’t like, I found it disturbing as if I would’ve moved my head I think my nose would’ve touched.

I was told to prepare for 4-5 hours of exam. So I got there and got injected with the magic substance and set free for 2h. The area the clinic is in has nothing around, I walked a bit up and down the streets and eventually returned to the main building to the cafe, got a coffee and waited. The 4-5h were in reality more waiting than scanning because the actual exam took about 15-20 mins. Then had to wait to be seen by a doctor to be told that my bones are clear. Then more waiting to get the printed results. Again, I didn’t get to glow in the dark, still hoping.

Next one up is next Thursday, the CT scan of everything, from brain to toes. Until then I seem to be free of appointments. Or did I miss something? Surely there has to be some scan or test somewhere :).

THE op and after

I’m here to write it so yay I’ve made it out of the op. I thought about this if I should write posts and back-schedule for the days I was flat on my back and topped up with morphine or do it a special offer – all in one. So all in one it is as we are now 3 days after the op.

Op day – Thursday. Went in way earlier than expected so it’s all ready for 8 am. Had to wash again in the morning with the famous Betadine, an iodine based solution. I still think that parts of me smell like it. Anyway, dressed in the famous blue suit and with incidental matching socks (special thank you to my pharmacy for this) last thing I remember was various people introducing themselves to me. I would not recognise any of them now, sorry guys. Just my surgeon. Last thing I remember was the clock in the operating theatre showing 7:59:48. Whoosh….gone.

We are now 5 ours later, because that is how long it took. In the ICU with a lovely nurse around me. I think this time the waking up was better. I was thirsty and she kept spraying me with the water spray. At the same time covered in a heated blanket powered by some device that looked like R2D2. It has to keep the breast and tummy area warm, thing that continued for 2 days after actually. I am told it took me 30 mins to wake up. I was in ICU for 5 hours as I had some pain and they kept topping me up with morphine. I woke up with the nose tubes for oxygen, which donut bother you, they are there to put some oxygen through so you can wake up. Got to the room around 18:30 with my husband and son waiting for me. The surgeon was lovely, he already told them how it all went etc when he came out. Of course now the world and the mother comes to see me and measure various things. I am on my back and again with the same sensation of not being able to sleep nor stay awake. In limbo really!

All my requests and tries to bribe people to get me water failed until later in the evening when the nurse gave me the green light. Let there be water! At this point I realised that I had a catheter so not having to get up… drink on!!! Not that I could’ve anyway. The surgeon visited, he is very pleased with the result and said it all went very well.

Not slept much the first night, only about 2h I think. At this point I had 4 drains, a perfusion and a catheter. Could there be any more pipes coming out of me??? I take this back, I’m sure there could be.

Friday – pain, pain… ok, managed, but pain! And it is not from my breast nor from my tummy. It’s from the muscles he used in the TRAM procedure. So At this stage I was feeling like in a cage, like a wide belt under both of my breasts and going down my tummy. Any movement and even breathing in a bit more that very softly hurts. And for this…no solution and no meds. They kept me topped up with morphine of course but even this can only do so much.

I had a magic green button that dispenses morphine into my vein if I press it. I was reluctant at this stage because of the massive amount of morphine they put into me the day before got me a bit doodah in the night. It is amazing how it plays with your brain and distorts reality, wide or awake. Or in between really

Saturday – The surgeon ordered blood tests as he said he isn’t happy about bleeding and wants to be sure. Blood tests happened in the morning, by lunchtime I had the result, a nasty anaemia which means blood transfusion – already ordered and on the way. I had palpitations all the time and first the thought it might be a reaction to some of the pain killers, which they stopped.

 I got moved into my own room by this point as well and it was nice. Two bags of blood later…thank you to whoever donated them…I started to be able to open my eyes more and be generally brighter. Got the catheter removed so now the challenge of the bed pan!

By the end of Saturday I got used to other people washing me and having to turn me or pull me up the bed as I kept sliding. So the bed pan was trivial.

 

Sunday – today, first day I manage to sit up and write this while watching the final of the football World Cup, France vs Croatia. We are now at 65 mins into the match and I just realised how slow I have been writing. It’s 4-1 for France at the moment. The entire hospital is in ecstasy here and not because of the drugs this time. Anyway, my day today…the drip went out so I’m not feeling like a T-rex anymore. I can sit at the edge of the bed for a little while, I can sit up in bed for the first time. The less pleasant bit is that I started to have a cough. I was not prepared for this type of pain! Can only compare it with giving birth :(. And why stop there? My period just started!

Because the morphine would kick in too late for me to endure at the time, I put my headphones on and listened to Michael Sealey. This man has helped me sleep so may times and helped taking the edge of the pain away through hypnosis so may times. And the good part is that it is all chemical-free. So when the nurse came with the little pot I was already feeling more zen.

In the meantime France has won! But I am have to lay down for now – not flat as I can’t be flat, but stretch out a bit. So more updates tomorrow…but yay, I have made it through this one! So I wish you all a good day/night/whatever it is in you country, and lots of bowels working because mine aren’t 😦

 

 

 

Shake it!

Yesterday I bought all sorts of raw bars, cereal bars, protein bars, nuts and grains munchies and protein shakes. A lot of women have recommended I should start a high protein diet about a week before the big op. So I have started today as my op is 6 days away now. I aim to drink 2x500ml shakes per day. I also went to the pharmacy and got a very gentle laxative which doesn’t have the dreaded Bisacodyl – Dulcolax brand. The bisacodyl works faster of course but the way it works is by stimulating the intestine movement whereas the one I got, based on a substance called Macrogol which is supposed to just help by softening the stools and it works slower. The idea is for the stuff to move and keep moving after the op to make life easier. I imagine that going to toilet with a cut from one hip to the other isn’t a great experience to begin with.

Now the pooping lesson over, I also got Lucozade, a glucose drink from the UK that I love because the girls on the diep group said a glucose drink would helps a lot while on the protein diet. We shall see how all this goes. Also stopped coffee and tea, chocolate and anything with caffeine or fizzy. 

On the more medical side – and of course the admin and paper work part – I still haven’t received my blood tests results so I must call the nurse see if she can trace them.

Did I mention no more coffee? (goes to curl up in a corner and cry)

Head, shoulders, knees and toes…

I am reading everyday on the various facebook groups I have joined for diep/breast cancer about women sharing their experiences about various operations they are going through. They call them ‘phases’ and they go from 1 being your first op until…well who knows… They are also talking about various interventions they have done to fix this, that and the other. It is all so complicated that at some point I stop and think that maybe it’s just me. Ok I want to get out of this asap and to look as decent as possible with as many interventions as possible, but it seems to be the thing right now to have various things fixed. It is there where I first heard the term ‘dog ears’. Seriously?! I had in my head an idea of what they could be talking about but honestly I went and googled it. So google almighty says… These are pointy ends of skin on the side of each hip, that remain after the abdomen is closed, during stage 1. These “Dog Ears” are removed at stage 2. This is the stage where you will be brought back to as near normal as we can get. 

Stages again… So my dilemma really is, where does it all stop? You will never be the same of course but does it ever stop? Because as far as we women are concerned we never like our bodies and there is always something to adjust. It never stops! Yes you do everything to feel good in your own skin but you never do once you go down the ‘fixing’ route.

But here it’s different, I just want this ‘thing’ out and a decent breast in place and I’m done. Yes part of me would love to get back at the social security and get them pay for a few more plastic surgeries. Just for the stress their paperwork is causing me (feeling evil here).

Most women go through 3-4-5 maybe more ops in an year and this is alongside chemo or radio. Is this really necessary? You are beaten up by it all already to have to go through an op where you want them to move your nipple 1mm to the right because it is slightly out of place. We are not symmetrical to begin with and if some women would remember the days before breast cancer, they would remember that their breasts weren’t symmetrical like neither are their eyes or ears for example.

My main issue (in my head) right now is ‘will I wake up from it all’ not that the colour of my nipple doesn’t go with the colour of my sandals this summer. Do I start writing letters to everybody before going in? 

 

You are strong! You can do this!

Can I? Because bugger me, sometimes it so feels like I have had enough of it, even though it hasn’t even properly started with the bad parts. Physically speaking.

I had a friend coming to visit yesterday and she was amazed of the fact that I sound so good and positive and so ‘strong’. I said to her ‘I suppose it’s the fact that I had the time to go through all sorts of feelings in the last few weeks. I have been up, I have been down, I cried a lot, I felt anger, I felt lost, I felt empty, I felt like I lost it all already.’ So, you see,…I have been through it all and I do not have a problem speaking about it. You will find this with people who suffer from this ‘thing’, they will talk about it with you and not mind in doing so. From my point of view, I guess it is the fact that it might just push maybe one person to think twice and go get checked early.

So am I ok? Yeah sure…I’m grand! I am as ok as I can be giving the circumstances. I want to be ok, I want to be normal, I want to not be looked at with pity by some people. How am I doing all this? How am I coping? Well do I have a choice really? No. So I have to cope, I have to find a way because ‘failure is not an option’. And yes I do have 2am thoughts and sleepless parts in any normal night but that is part of it, it will always be now. But right now I am ok. I am looking forward to the big op next week and yes it is weird but I am just looking forward to it being done. So yeah I am ok, how can I be?

And to top it up a few days ago I have received the 100% letter from the social security. What a joy! The way it works in France is that once you are diagnosed, your family doctor (referred to him as gp in my blog, as in general practitioner) makes a letter and fills in some forms (of course, always forms) and then all that is being sent to your social security organism. It has to be something serious (like cancer) in order to apply for this. There is a list of illnesses called ‘ALD – affection de long durée’ i.e. long term illness, and cancer is one of them. This gives you a 100% reimbursement from the social security on the treatments and interventions linked to your illness. Not everything you will go through will be included in this, there are exceptions, of course. Let’s just hope that there aren’t too many because at this rate my breast will be the most expensive thing I own and I shall need extra insurance on it in case something happens. This took about a month to come through. And of course they have my date of birth wrong on the bloody letter. Do I care? No! Because they already made a mistake and mistyped my date of birth already and that took a few weeks to correct. But that is a story for another post…

 

Double joy when finally my social security account has linked (finally) with the private health insurance account. So fewer papers for me to send everywhere and less stress on this matter. It only took nearly 4 months for this to happen. Over here once you pay your 70€ fee for an appointment let’s say, they swipe your ‘carte vitale’ – social security card, and then you get reimbursed 70% after about 3 weeks. Normally this is transmitted automatically to your private health insurance and they reimburse you the rest, if said appointment or test qualifies with your plan. I now have the luxury for all this to happen without me sending forms everywhere in 2-3 copies. Yay me!

Hot! What is normality?

Today it is a hot day! 42 degrees C in the shadow in the courtyard and well…I don’t know anymore in the sun because my thermometer only goes to 50 and the red line is way over that. Warm inside as well but not as bad.

Pain wise I am so much better today and even drove a bit more than the 5 minutes to the village. Still with a cushion at the tummy where the seatbelt goes.

On the way back home I stopped at my local pharmacy and as the lady is so nice I had a chat about what I would need to make my life a bit easier ‘after’, for us, temporarily  disabled people. 🙂 I only had in mind the toilet seat adapter to raise a bit the ones at home. I noticed this time after the first op that at the hospital they had the toilets quite high which was good and comfy. When I got home, old house, lower toilets, I found it a bit difficult to sit and stand in the first few days so I only expect it to get worse the second time around while cut up in the middle.

Did I mention how hot it is today? So water sprays are a must! Been having a head ache most of the day and these help keeping cool.

The pharmacist also suggested wet wipes, which I already have for hospital use. No idea when I will be able to have a proper shower so she said a handheld shower head and a plastic chair in the bath will do the trick so my ideas was a plastic garden chair. (will update as and when I remember or figure out what else is needed) I do believe that there is no point in investing in these things (like a 40€ little plastic stool) for a temporary condition. Plus, you need to move as soon as possible. That was me, I can’t stay still so that’ll be a challenge.

In a funny, weird way I am looking forward to this big op. I don’t know why…is it because I am looking forward to have it done with? To slowly get back to normality? Ok, I do realise that normality will never be the same but every test, every op, every appointment I go to makes me feel like this ‘thing’ is being dealt with. And I feel one step closer to it getting ‘fixed’. I know that ‘fixed’ is another word that might never be the same but when you are dealing with this you will find that every day you are here feel normal, like a normal life.

Last night I had to go outside in the garden as the car alarm got set off by an insect. I left the windows open because of the heat. My key doesn’t work from the distance so had to go all the way close to it to turn it off. It was just after midnight and part of my walk to the car was on the grass. For the first time, I think, I stopped for a few seconds and my bare feet on the grass felt so nice. Looked up and it was a clear sky and it looked lovely. Crickets cricketing and frogs frogging were the only sounds. And I thought how much I liked it. How much I wanted to still be here for a while. A big while. How angry all this situation makes me and that I really am determined to do anything and everything to sort it out. It was all so calm…well until the dogs spotted that there was someone in the garden and started barking :).

The thing I hate the most since this happened is the people who look at you with pity and the ones who feel sorry for you. I know they probably feel it, they might genuinely feel sorry for you but the look says it all. And it doesn’t feel good. All of a sudden you want people to treat you like ‘before’, like you were treated before, normal. There are days when you feel sorry for yourself of course but you don’t want to see it in other people’s eyes.

PS: yes I had yet another set of tubes of blood taken. Apparently it was most likely to be the heat that did something to the blood and the machine didn’t like it so it all went ‘tits up’. (see what I did there…?).

 

 

 

What is DIEP Flap?

For those of you who asked me what is actually going to be done…here is a quick animation of it after the wiki explanation.

And a bit from wiki…if you click on the red text below it will open more info from Wikipedia.

A DIEP flap is a type of breast reconstruction in which blood vessels called deep inferior epigastric perforators (DIEP), as well as the skin and fat connected to them, are removed from the lower abdomen and transferred to the chest to reconstruct a breast after mastectomy without the sacrifice of any of the abdominal muscles.

Blood! Blood everywhere!

This morning I had a visit from the nurse to take my blood for the tests before the big op. Nothing unusual of course besides the fact that she couldn’t manage to find the vein on one side so had to swap arms. All went ok until I get a text message telling me ‘there have been some issues with your blood and the lab asked me to redo the test, could I come tomorrow please?’.

We set a time and we shall see each other tomorrow again. She is a lovely girl in fact but comes across a bit nervous.

Now my cat side (curious) made me text her and ask what was the actual issue with my blood. So she said that one of their machines broke down in the middle of the test so it all has to be redone as the blood has been compromised. ‘It happens sometimes’ I’m being told. Ha! What a relief! Was it only my blood in there or more of those little tubes? Does everybody now have to get their blood taken again? I won’t be able to sleep tonight thinking about it! 🙂

Ok I will probably sleep. I am tired all the time and not sure how much is physical and how much is emotional exhaustion. I did find a nice way to sleep (non chemical one) even though I still wake up in the night sometimes. Link here.

 

 

Still ironed!

Thursday, 28-06-2018

This sums up really well the mood of today. After having done 3 trips just to empty a load of the washing machine to put out to dry, I think I will leave the ironing for tomorrow. My sciatica is somehow worse in the last few days and I am sure it is just the weird positions I have to sleep in or the way I walk lately.

Which reminds me…tomorrow I am having a nurse come over to take my blood for yet another blood test. For the big op I will need a blood group card, which I have, but being from the UK it doesn’t count.

And I can still not eat properly or the amount I should which makes me feel weak and light headed most of the time. And to top it up, a friend mentioned curry in a post on Facebook (thanks Caroline!…not).

The joy is when you get a letter from the health insurance telling you that they will cover your anaesthesia for the op. I wonder though…if they would’ve covered only half or 3/4 etc… does that mean they would have to wake me up half way through saying ‘ok love that’s it, all they paid for!’ 🙂

Going home!

Friday, 22-06-2018

Going home day! Jogging bottoms of course and loose t-shirt. I couldn’t walk fast, I couldn’t walk much but I felt better than the previous day of course. My head seemed all there (don’t get fooled, it’s never all there) and no dizziness or sickness. In fact, I didn’t have any of these after the anaesthesia. The only issue I had was the very sore throat due to the intubation tube.

My husband arrived around 9am and the nurse said it’s good to go so off I went.  Of course another blood pressure check wouldn’t hurt.

Breakfast in bed in the meantime…

Ok, I went slowly but still happy to be out.

Appointment booked for check-up scan with the radiology for the 9^thof July.

Getting home I soon realised I am not able to do much. I hate when I feel restrained and depend on others.

Of course, at home the toilets are at standard height. Ouch!

Quick visit to the pharmacy on the way home to get painkillers, another prescription for iodine solution I will need for the next scan and throat soothing candies.

On the good side, my smear came back normal. Yay me!

Embolisation operation

Operation day!

I wake up at 5 and just as well because the 6am blood pressure turned into 5:20 am. I was awake anyway. More magic pills been given – Atarax x 2. At this stage I feel ok, not too worried. At around 9:30 I am being told I can change into my blue suit and wait.

10 am more Atarax x 4 so double dose now. By the time I went in, I was nicely high. They came and took me just before 11. They insisted in pushing me into a wheelchair and then on a bed although I said I can walk perfectly fine. In the end I took advantage of it.

Got to the operating theatre at 11 o’clock. According to the report I got afterwards, by 11:05 I was already opened up.

Had a canula put in with the anaesthetic. 2 seconds later the ceiling started turning a bit and I could hear the two guys asking me to think of a walk on the beach with my son. I said I don’t like the sand getting everywhere because it is hot and sticks to you. Then they said ‘well think of a nice place’… gone! I was out. The op lasted for an hour and a half.

13:45 – I woke up in the ICU and as soon as I opened my eyes I wanted to close them again. It was a weird sensation of wanting to go to sleep, but your body wants to wake up. Can’t keep your eyes opened but if you close them you can’t sleep. Limbo situation which lasted for a few hours after. Waited for my blood pressure to go over 100 and then they transferred me to my room. I am on a glucose drip. My mouth was very dry, but they spray you with a water spray.

14:15 – in the room. I am now not allowed to move for the next 6 hours because it might cause internal bleeding. Fair enough but I am someone who can’t stay still. Big task!

16:00 – ok this was not on my bucket list. I wanted to go to toilet, so I had to use a bed pan. My first ever time, had to ask the nurse (the shift that day was a male nurse) how do you use one. It had to be done.

By 19:30 I needed toilet again and called the nurse who helped me to the bathroom door to make sure I’m not feeling dizzy. Of course, I had to take the tree with the drip with me. But the moment when I went to toilet by myself was so satisfying. Here it is!

Wet wipes are your best friend here. It all makes sense now why toiles in hospitals are so high.

The surgeon came to see me around 8pm. Said it all went ok. I am now still in my blue suit which makes you sweat but apparently as long as you have the drip in, you cannot change. Also, was waiting for the surgeon to say it’s all ok. He said I can go home the next day. All I need is to set an appointment with the radiology for another scan. They need to do one to see it all settled ok post op. And not to move much! Not to lift anything!

He asked if I was having any pain, which I wasn’t. The canula was the only thing hurting. They put me on a paracetamol drip for a couple of hours. I was then able to change into my pyjamas as the canula got removed. The relief! The feeling of cotton was so nice! No more plastic/paper/sweaty suit.

Not much sleep that first night. The nurse said it is normal after general anaesthesia. I fell asleep around 2:30am and woke up at 6. I had to watch 2 football matches and various tv shows. Read ¼ of a book and did a page of crosswords.

 

Hospital pre-embo day

Wednesday, 20-06-2018

Admission into the hospital for the embolization operation. I get given a blue suit to put on for the operation. A bonnet and shoe covers. Well, you aren’t supposed to wear shoes in the theatre, but you get the idea.

Everybody is lovely. The room is basic but for 3 days while I will be there, there’s no need for more. I seem to have the only room on the 3^rdfloor that has a working aircon. 35 degrees outside and about 30 inside. They had to put fans in other people’s rooms. It all makes sense now why so many people were coming to see me so often and were checking up on me. It was for the aircon.

I get drugged not to feel too nervous. Got to love hospitals’ drugs. Xanax this time. Didn’t feel it did anything, feeling as normal.

I get a visit from the surgeon. Always helpful for the morals when your surgeon is in his mid 30s and looking good. He explains again what and how he will do it. Expected time under general anaesthetic about 1,5h.

Visit from the anaesthetist on duty who prescribes more magic drugs for the morning of the operation. Atarax this time. No eating or drinking after midnight. Been given 11 am the next day as the op time.

At least the view is nice…

Told me they will come to take my blood pressure around 6am. Not slept much, too nervous, new noises etc.

Last supper…I now know I am not a huge fan of chard stew.

The decision and the date!

Monday, 11-06-2018

9:30 – Surgeon appointment – the decision

So I read a lot in the last week about different types of reconstruction and decided to go for the implants. Diep flap was actually my first choice but in the info sheets I was given they say that diep could be done a few months after the mastectomy. In my head I wanted as few interventions as possible with as quicker recovery time as possible.

I present him with my implant decision. He was a bit surprised. I said I am trying to avoid the need for various operations. He said he could do it at the same time so after more questions and chats I decided to drop my initial decision and go for diep flap. If you have a mastectomy, an implant will go straight under the skin and that will give a look of a porn star. In normal cosmetic implants they go under the muscle which makes it look a little bit more natural. Apparently my body can take a diep flap operation at the same time with the mastectomy and he is happy to do it. So it is all decided from this point on.

We are talking about 7-8 hours of operation which partly will be microsurgery and a very long and tedious recovery time.

He explains that it would be in this case useful to have a first ‘preparatory’ operation called an embolization which will stop the 2 main arteries going towards my tummy so that the tummy area gets vascularised more. This will help the main operation’s microsurgery part.

It is a keyhole type in my groin, both sides, at the knickers line.

Set meeting with the surgeon that will do this and the anaesthetist for Friday the same week (the 15^thof June).

At the same time he starts doing my admission folder and calls the hospital and sets an appointment for me with the anaesthetist for the main operation and with the pre-admission office the same day at 14:30. At this stage I am happy that I don’t have to make a separate trip for all this. He was so understanding of the fact that I live some way away and every time we met he did his best to sort out as many things as possible on the spot.

Meetings done and I am pre-admitted for the big operation. Date set for 12^thof July. Have to be there a day before in the morning at a different clinic for the liquid insertion that will help with the sentinel nodes. Then at 16:00 on the 11^thadmission. I chose to have a single room.

Good friends in the right places

Tuesday, 05-06-2018

I get a call from the MRI department asking me to go for an MRI on Friday the same week. Thankfully I have a friend who drove me there, not sure if I could take the stress of the journey, nor would my car for that matter.

I need a liquid for them to inject during the MRI. Great help from my local pharmacy here who gave me the product and I would bring them the prescription later after I got it from the hospital.

The solution they put in (via drip in my vein) hurt my arm, had a huge bruise at the end of it. The time inside the machine was about 15-20 minutes. The table was relatively comfortable as your breasts will come out through two holes and your head is supported by an U shaped cushion like the massage tables. You are of course on your tummy all this time. Take advantage of it. Who knows how many tummy days you have left before you are stuck on your back all the time?! Fairly comfortable position and the fact that it was all nice and cool room it helped. The liquid goes in half way through the procedure.

Got the results straight away. Nothing that we didn’t know before, so they are happy they did one. Everybody is amazed at the story and how it all got discovered. The most puzzling part is that I had no pain and they couldn’t have found it at just a physical examination. It is lots of little bits spread everywhere, not a mass.

The biopsy results

Friday, 01-06-2018

Biopsy results are in. I am seeing my surgeon. There is a very small part that has escaped so we go ahead with the mastectomy. I suppose this is better news than I expected. It could’ve been worse.

Been given lots of info sheets to read about various ways to reconstruct, or not. We agree we meet on the 11^thof June to present him with my decision. I get the coil put in. Pain again, bad period pain type. I got given a drug called Spasifon which is supposed to ease the contractions. Not sure it actually did anything. High on paracetamol mixed with codeine. Bleeding a bit and a few days later proper period started. Got him to do a smear at the same time. If this thing had spread, then rumour has it it first goes there! Have a good stack of pads on the ready.

 

The biopsy

Tuesday, 22-05-2018

10 am – Surgeon appointment. By this time, I already knew what I have and how things stand. I am being told to expect a full mastectomy on the left and with the possibility of reconstruction at the same time or later if desired. He calls a few ‘mates’ in the hospital and half an hour later I am waiting to go into the radiology department for a biopsy. Next time I see him it will be for the biopsy results. Agreed he will be my official gynaecologist from now and next time he will put a coil in, so I can be off the pill.

Biopsy went ok, local anaesthetic, big needle-like tool very thick that goes in 6-7 times and takes a few samples of affected tissue. By the time I got out the effect of the anaesthetic was going so it felt quite sore. Nothing compared to the fact that I had to go bra-less for the rest of the day. Pain continued for a few days after. I am not to shower for a couple of days. This is the moment when it is useful to have some dressings and plasters like they used for the biopsy would, just to replace and see if all is ok.

At this point I had taken out the wires from some of the most comfortable bras I have. The biopsy wound wouldn’t let me wear underwired and from now on I guess I will be living in sports bras type of thing.

Efficiency at it’s finest!

Monday, 21-05-2018 – bank holiday

I go online and take the first available appointment with the surgeon, 11^thof June. As my gp asked to keep him updated I text him and say I got an appt for the 11^th. Reply was ‘not good enough, let me see what I can do!’. About 10 mins later he texted me back saying ‘you have an appointment with the surgeon at 10am tomorrow morning’.

If that is not efficient then what is?

At this stage I cancel the cardiologist appointment which happened to be the same day and at the same time. We now know what it is we are dealing with.

The official news

Friday, 18-05-2018

19:30 – The meeting with the gp. He cancels my appointment at the local clinic that the radiology made for me for the biopsy. He wants me to be treated in a city about 1,5h away by a better team that he knows well.

We are dealing with a bank holiday weekend, Monday everybody has the day off. So we agree for me to call his surgeon friend first thing on Tuesday and make an appointment.

 

 

 

 

The news!

Thursday, 17-05-2018

10 am – appointment for a mammography

This is where it all started.

Well it all started a week or two before that in reality. In the village nearby, they have a blood donation event every few months. I decided to go and donate blood. Always done it in the UK so why not. I get the various tests done and forms filled in and when it comes to taking my blood pressure they say they cannot take me that day because my blood pressure is a bit high. I say ok and leave disappointed. The doctor there said: you might want to check it with your gp as it isn’t normal at your age. I say ok, but maybe it is stress, been going through a bit of it lately.

A week later I go to the gp for a repeat prescription on the antihistamines. At the end I say ‘oh by the way could you take my blood pressure please?’ and I tell him the blood donation story. He says it is a bit high and not normal at my age and this is a sign for breast cancer. To make sure and eliminate all possibilities he sends me to see a cardiologist, full blood tests and for a mammography.

I set the appointment with the cardiologist for June and leave the mammography for a few days as it wasn’t urgent in my view. Passing by the radiology clinic a few days later, I think oh I will just make that appointment while I’m here. Appointment set for the 17^thof June. And so, it begins…

Came out with a set of results showing ACR5 in my left breast. Nobody explained what it means, just that I need a biopsy to see better what is going on. In fact, the radiologist couldn’t feel anything at the physical examination and wasn’t sure if there is anything at the scan. So, decided to go ahead with the mammography.

Left to get home, 10 minutes into the drive I get a call from my gp saying it’s serious and we need to meet up asap. I agree for a meeting the next day in the evening.

He got a call from the radiologist who did my mammography. I wish she would’ve told me a bit of what is going on.

Like 99% of the world population I get home and start googling the results. That is when it all hit! I have cancer.

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.