So I needed another ultrasound. The oncologist reccomended a place in Paris, Duroc and addressed the prescription for a particular doctor. I made an appointment for a few weeks time.
I arrived (took me an hour to get there) and it was very swish with nice receptionists (!) and really lovely offices. I saw the doctor almost immediately but I wasn't going to get examined today - she explained that it was too soon after my last exam and I needed to wait 3 months. So I made an appointment for November. They were very nice, but I'd lost 2 hours of my day and I had 3 months to wait!!
November came. I turned up, rather stressed after all this time and found out that apparently my appointment had been cancelled by phone as the doctor I had to see was not there that day. I insisted on seeing someone - I'd cancelled stuff to be there and I was stressed. So they agreed.
I had a mammo with a rather brisk in a hurry woman who asked me questions but wouldn't let me answer. Then I saw the ultrasound doctor. She was nice and put me at ease immediately. She found the 'new stuff' in my left breast and said she thought it was very probably not anything to worry about at all. However, she explained that this was new stuff, which hadn't grown, but still had to mark my left breast as ACR4 which means something, probably nothing to worry about but something nontheless.
She asked me if I wanted a biopsy. I said I'd rather not but she said I should see the oncologist first then see what they reccomend me to do. I left feeling reassured, but really really frustrated. So I need a biopsy on the site of the biopsy to make sure there's nothing there? Fucking mad. This vicious circle could go on forever. I have a feeling that I will never get to the end of this and a reconstruction is as far away as it could possibly be.
How has this affected me? I am down, I am very down and have been since February. I have moments when it's ok but I feel so tired of all of this and this constant buzz of worry which is just under my subconscious, always on my mind but not at the forefront. 'What ifs' that grow stronger then weaker depending on what else is going on.
There have been two ladies on a Facebook secret group (for English women breast cancer people who live in France), who have died. This has affected me. I have left the group quietly as it just wasn't helping me at all.
I'm seeing my oncologist on Saturday, which is why I think I feel the need to post today. My nice oncologist has left the service unfortunately so it's either the pretty nice but busy woman or the man who I don't like. We'll see. We'll see what they say.
I've lived with this worry for a year now, this constant - let's see, waiting......it's not been nice. I've put on all the weight I lost in anticipation of my reconstruction. I'm even uglier than ever. I'm sad and frustrated and want to get on with my life. This is the face of cancer that people don't understand or see. People have pretty much stopped asking me how I am, they forget and they have the right to forget, they see me getting on, but I am living with this, you can't see it on my face, but it's still going on, it's nonstop. It never stops.
Monday 5 December 2016
A year-long worry
I haven't posted for ages. I wanted to post with good news but the crappy (not bad, but just really annoying and worrying news) keeps on coming.
Firstly, can I say that I KNOW I am lucky. I have survived up to now, I have my life a bit more back on track etc. I'd like to say and nasty cancer nightmares are behind me, I've got used to my ugly chest and I worry less. But guess what? I can't.
The horrible biopsy was rien grave, yes. I had my what is now annual check-up in July. I had a mammo and the operator was very neutral, which worried me no end (been there before, that had a bad ending...) She said, by precaution, I should have an ultrasound - don't like the sound of that 'by precaution either - and I couldn't have an appointment for two flippin weeks. So I worried hard for two weeks.
I had the ultrasound in the morning and an oncologist appointment in the afternoon (with the nice, caring, listening oncologist). I waited over 2 hours for my appointment and was only just in time for the hospital. The appointment was a fucking farce. I had told the receptionist that I had an appointment in the afternoon and I would need the results, and I did that because I'd phoned a couple of days earlier to check the results would be ready in time on the day. The ultrasound operator wasn't aware that I'd had a biopsy under MRI, she evidently hadn't read my notes at all. I told her I had an appointment with the oncologist in the afternoon and she huffed and puffed and said 'why didn't you tell me?' I said I told the receptionist, she yelled over to the receptionist and she said 'no I didn't know' - fucking liar. When I was checking out, I asked for my previous scans, mri, results that I'd brought with me. They couldn't find them. And then the receptionist found them under her desk. She also tried to charge me for the appointment, which happens every time, and I have to insist that I'm covered 100%, and she always backs down and says 'I can't see that on your Carte Vitale'.
I waited another 2 hours to see the oncologist. She had an emergency. I understood. She took one look at my results and said 'why didn't you give your MRI to the ultrasound operator, she says they weren't available'. She lied. So the oncologist kind of lost it and said - it was a waste of time you need to have another ultrasound somewhere else, these people are crap.
So I was back to where I'd started from with much time lost.
Firstly, can I say that I KNOW I am lucky. I have survived up to now, I have my life a bit more back on track etc. I'd like to say and nasty cancer nightmares are behind me, I've got used to my ugly chest and I worry less. But guess what? I can't.
The horrible biopsy was rien grave, yes. I had my what is now annual check-up in July. I had a mammo and the operator was very neutral, which worried me no end (been there before, that had a bad ending...) She said, by precaution, I should have an ultrasound - don't like the sound of that 'by precaution either - and I couldn't have an appointment for two flippin weeks. So I worried hard for two weeks.
I had the ultrasound in the morning and an oncologist appointment in the afternoon (with the nice, caring, listening oncologist). I waited over 2 hours for my appointment and was only just in time for the hospital. The appointment was a fucking farce. I had told the receptionist that I had an appointment in the afternoon and I would need the results, and I did that because I'd phoned a couple of days earlier to check the results would be ready in time on the day. The ultrasound operator wasn't aware that I'd had a biopsy under MRI, she evidently hadn't read my notes at all. I told her I had an appointment with the oncologist in the afternoon and she huffed and puffed and said 'why didn't you tell me?' I said I told the receptionist, she yelled over to the receptionist and she said 'no I didn't know' - fucking liar. When I was checking out, I asked for my previous scans, mri, results that I'd brought with me. They couldn't find them. And then the receptionist found them under her desk. She also tried to charge me for the appointment, which happens every time, and I have to insist that I'm covered 100%, and she always backs down and says 'I can't see that on your Carte Vitale'.
I waited another 2 hours to see the oncologist. She had an emergency. I understood. She took one look at my results and said 'why didn't you give your MRI to the ultrasound operator, she says they weren't available'. She lied. So the oncologist kind of lost it and said - it was a waste of time you need to have another ultrasound somewhere else, these people are crap.
So I was back to where I'd started from with much time lost.
Thursday 21 April 2016
rien grave
A short and tardy update.
Vero, the oncologist's secretary called me whilst I was teaching. I don't usually answer my phone during lessons, but I took the call anyway as she is so difficult to get hold of.
She said 'I suppose you haven't had the results of your biopsy, have you?' I said 'no, what are they?' (heart beats very fast at this point). She said 'ilya rien grave' - there's nothing serious. She didn't say what it was (I didn't ask) but that's all I needed to know really. I made an appointment to see the oncologist in early May for another Tamoxifen prescription and there we go.
That conversation that lasted all of one minute brought an end to my 2 months of worry!
Last time I had a biopsy I hadn't told anyone about it except my family. This time I had a lot of people to tell the good news to. I hope I've told everyone. In a way it's been more pressurised as more people knew about it, but in another way, it's been nice to know that people care. I posted on Facebook - a slightly enigmatic post, not wanting to give details, but to let those who knew what I wanted them to know. I had a couple of FB friends who put ?? as a comment but you know if they want more information, they can pm me or even call. I didn't want to put it all out there. (Although here I am writing a blogpost). Yes, I see the irony.
Anyway, we drank champagne to celebrate and I got a little bit tipsy on a night out with my friends that week and there we go, life goes on, another drama replaces that one.
I feel more 'ough' than 'yippee' - this has really taken it's toll on me and my family and friends, it's been a long 2 months, too long by far. I thought I'd feel yippee but 'phew' is good enough, really. My friend said 'oh at last you'll be writing a happy blogpost', but I don't think so, a relieved blogpost, for sure.
Not sure if I want to launch myself into the medical field again and do the reconstruction now. Not sure at all. Maybe this will change with time. I want to keep away from hospitals for a while after that nightmare experience. My Mum, who doesn't want me to do this operation and sees it as unnecessary plastic surgery (possibly a vanity operation, I dunno), said I was beautiful as I was, which was nice of her and very sweet. I reminded her that I was still deformed and she didn't have to look in the mirror at that every day or avoid going swimming or the beach because of a mis-shapen body. Obviously, there's still a need for change in my head. But not right now.
Thanks so much to all of you who have sent messages, called and just been really nice, supportive people. It's all about the people.
Vero, the oncologist's secretary called me whilst I was teaching. I don't usually answer my phone during lessons, but I took the call anyway as she is so difficult to get hold of.
She said 'I suppose you haven't had the results of your biopsy, have you?' I said 'no, what are they?' (heart beats very fast at this point). She said 'ilya rien grave' - there's nothing serious. She didn't say what it was (I didn't ask) but that's all I needed to know really. I made an appointment to see the oncologist in early May for another Tamoxifen prescription and there we go.
That conversation that lasted all of one minute brought an end to my 2 months of worry!
Last time I had a biopsy I hadn't told anyone about it except my family. This time I had a lot of people to tell the good news to. I hope I've told everyone. In a way it's been more pressurised as more people knew about it, but in another way, it's been nice to know that people care. I posted on Facebook - a slightly enigmatic post, not wanting to give details, but to let those who knew what I wanted them to know. I had a couple of FB friends who put ?? as a comment but you know if they want more information, they can pm me or even call. I didn't want to put it all out there. (Although here I am writing a blogpost). Yes, I see the irony.
Anyway, we drank champagne to celebrate and I got a little bit tipsy on a night out with my friends that week and there we go, life goes on, another drama replaces that one.
I feel more 'ough' than 'yippee' - this has really taken it's toll on me and my family and friends, it's been a long 2 months, too long by far. I thought I'd feel yippee but 'phew' is good enough, really. My friend said 'oh at last you'll be writing a happy blogpost', but I don't think so, a relieved blogpost, for sure.
Not sure if I want to launch myself into the medical field again and do the reconstruction now. Not sure at all. Maybe this will change with time. I want to keep away from hospitals for a while after that nightmare experience. My Mum, who doesn't want me to do this operation and sees it as unnecessary plastic surgery (possibly a vanity operation, I dunno), said I was beautiful as I was, which was nice of her and very sweet. I reminded her that I was still deformed and she didn't have to look in the mirror at that every day or avoid going swimming or the beach because of a mis-shapen body. Obviously, there's still a need for change in my head. But not right now.
Thanks so much to all of you who have sent messages, called and just been really nice, supportive people. It's all about the people.
Friday 1 April 2016
Biopsy under MRI
The day came and now has gone, thankfully.
dh dropped me at the entrance and quickly found a parking space. I went down into the bowels of the mega hospital to register. My legs and arms felt weak as I was walking into the hospital and I was shaking, I was pretty nervous to say the least. I was immediately ushered to the waiting area and was surprised to be called very quickly, ahead of time for my appointment. Great.
A very nice gentle giant called Kevin showed me the changing room and the gown and once I'd undressed, sat me down to put in my line and the syringe. I explained to him that I wasn't great with needles. He was fabulous - gentle, calm and got the line in absolutely no problem. Virtually no pain.
I waited in the changing room and the doctor came in to explain what was going to happen. I was pretty cool with the MRI business - I knew the drill and I wasn't really frightened about it. Her explanation of the biopsy part of things was pretty good, I thought. Apparently I would have several ceramic needles put into my breast and their positioning would be checked by the MRI machine so I would be in and out of the machine a lot. A machine (she called it a robot) would take the samples would make a weird noise when it did it, but I shouldn't feel anything). They would give me a general anaesthetic and I would have to wear a plaster for the next day or so. She also said that she'd seen my previous MRI and could see nothing to worry her but she knew that the surgeon wanted to check there was nothing before he did the lipofilling. I was surprised to know that the test would last around an hour - that's longer than I thought.
Ok, so that was the theory. Got installed as comfortably as possible with foam arm rests, ear protectors and a foam rest for my head. My left breast was clamped into place and I think I felt them put a belt around my body so I couldn't move. I was flat on my stomach with my arms above my head, right hand holding the syringe attached to my arm by a tube and a small alarm was placed in my left hand in case I wanted to stop the test at any time. I later had to let go of this because I was seriously tempted to stop.....
I went into the MRI machine as normal, lots of noise, I counted backwards and tried to chill. The liquid was inserted into my body via the syringe and it was cold. I stayed very still and the doctor said I was doing fine. So far, so good. Then it all went pear-shaped.
The bed was pulled out of the machine and the doctor came to my side and told me she was putting in the anaesthetic. It hurt but I thought 'that's good, it's over now, I won't feel anything else'. There were a few 'ow ow ow' but I thought that would be ok afterwards. She didn't wait very long before she put the first biopsy needle in (maybe too soon). It hurt like hell. I shouted out, involutarily and it felt like my side was being crushed and the sharp point really hurt. The bed went back into the machine to check the needle was well positioned. It came out again for the next needle. She asked me if I was 'always so sensitive' and said she would give me a second dose of anaesthetic as the first evidently wasn't enough or not working. Then she put the second bipsy needle in.
It was absolute agony. I cried out again and started to get very very stressed. Lovely Kevin came over and put his hand on my back and told me to breathe. I thought I was going to be vomit with the intense pain so he put a little dish under my face to be sick in, I was hot and cold and that horrible hot before you vomit. Then back into the machine. Then out for another needle, then in again. Each time the needle caused me to cry out in pain, it was like never-ending torture. I ended up weeping, defeated the whole time, I was exhausted. Tried to keep my body from sobbing as I knew I had to stay still. I think this happened 5 times, the needle and in and out stuff, I don't know. Somehow it all blurred into one whole nightmare experience.
I dropped the alarm because I was too tempted to stop the test, it hurt so much. The doctor asked me if I wanted to stop, I said no I have to do this. Carry on.
Once all the needles were in place (I think there were 5, maybe 6, I don't know), the biopsy process started and I felt a sort of aspiration, something being sucked out of my breast and there was a noise, as the doctor said there would be. The first one hurt a bit, I could feel the flesh being sucked out, but it was just unpleasant. The rest I didn't feel so much and the last 2 I didn't feel at all, just the noise and a weird sensation. I figure the anaesthetic didn't reach where the first few needles went in. Surely she should have tested my sensitivity before trying to put them in so she knew I was numb?
All this time I was strapped to the bed, face down. I couldn't see what was going on, my gown had exposed my bottom as it was pushed to the side (I had my knickers on) but I felt so so vulnerable and terrible.
Finally she said 'it's done, we have the samples'. I could hear her ordering about the staff telling them to get test tubes, plasters....I then sat up and she said 'don't look'. So I did!! The machine was covered in blood, my bright red blood with pools of it on the left where the biopsy had been taken. I could see she was panicking and she told me that I had moved during one of the needles so the opening was 'larger than expected' and was bleeding. She didn't want to stitch the bleeding but put several sticky strips on it then the staff went away and came back with a huge sticky bandage that she stuck on. I think I had been pretty severely damaged. I had blood on my stomach, although they tried to mop it up.
Just to show you that I'm not a moaning Minnie, here's a photo of where they did the biopsy after I'd taken the bloodied bandage off (1 day later). This cannot be normal. I have to wait for these sticks that are holding the wounds together to drop off, apparently.
I said I was sorry to have shouted but it hurt so much, I couldn't help myself. She said that she was on the Cancer Commission when they discussed my case and, as a doctor, she knew what a biopsy was (ie, how painful it was I think) and she wanted me to wait 6 months as the 'thing' might have gone away by itself. But she said 'no, you wanted a biopsy at all costs, so you got one'. I said I had already waited 2 months and the thing was still there and I was so stressed that I wanted to know if I had cancer again or not, surely she could understand? No reply, just frantic trying to stop the blood from coming.
I stumbled towards the room where Kevin took out my line gently and thanked him for his kindness to me. Said goodbye and I was free to go. dh was there waiting for me. He said he could hear me shouting in pain. I shook and shivered all the way home, and cried. I think I was in shock.
We ordered a curry and I was allowed to watch a stupid girl film to relax me.
The area hurt like hell and I took a lot of painkillers that evening (Doliprane not Aspirin) and I slept well, despite being uncomfortable.
Today I did absolutely nothing. Cancelled my class and watched tv, ate chocolate and crisps. I am exhausted and weepy and in pain.
There, I just wanted to get it all written down. This was an absolutely horrible experience - much worse than the first 2 biopsies and I am feeling very unsettled and exhausted a defeated (not sure why). I'm just glad it's over now. The experience was horrendous.
dh dropped me at the entrance and quickly found a parking space. I went down into the bowels of the mega hospital to register. My legs and arms felt weak as I was walking into the hospital and I was shaking, I was pretty nervous to say the least. I was immediately ushered to the waiting area and was surprised to be called very quickly, ahead of time for my appointment. Great.
A very nice gentle giant called Kevin showed me the changing room and the gown and once I'd undressed, sat me down to put in my line and the syringe. I explained to him that I wasn't great with needles. He was fabulous - gentle, calm and got the line in absolutely no problem. Virtually no pain.
I waited in the changing room and the doctor came in to explain what was going to happen. I was pretty cool with the MRI business - I knew the drill and I wasn't really frightened about it. Her explanation of the biopsy part of things was pretty good, I thought. Apparently I would have several ceramic needles put into my breast and their positioning would be checked by the MRI machine so I would be in and out of the machine a lot. A machine (she called it a robot) would take the samples would make a weird noise when it did it, but I shouldn't feel anything). They would give me a general anaesthetic and I would have to wear a plaster for the next day or so. She also said that she'd seen my previous MRI and could see nothing to worry her but she knew that the surgeon wanted to check there was nothing before he did the lipofilling. I was surprised to know that the test would last around an hour - that's longer than I thought.
Ok, so that was the theory. Got installed as comfortably as possible with foam arm rests, ear protectors and a foam rest for my head. My left breast was clamped into place and I think I felt them put a belt around my body so I couldn't move. I was flat on my stomach with my arms above my head, right hand holding the syringe attached to my arm by a tube and a small alarm was placed in my left hand in case I wanted to stop the test at any time. I later had to let go of this because I was seriously tempted to stop.....
I went into the MRI machine as normal, lots of noise, I counted backwards and tried to chill. The liquid was inserted into my body via the syringe and it was cold. I stayed very still and the doctor said I was doing fine. So far, so good. Then it all went pear-shaped.
The bed was pulled out of the machine and the doctor came to my side and told me she was putting in the anaesthetic. It hurt but I thought 'that's good, it's over now, I won't feel anything else'. There were a few 'ow ow ow' but I thought that would be ok afterwards. She didn't wait very long before she put the first biopsy needle in (maybe too soon). It hurt like hell. I shouted out, involutarily and it felt like my side was being crushed and the sharp point really hurt. The bed went back into the machine to check the needle was well positioned. It came out again for the next needle. She asked me if I was 'always so sensitive' and said she would give me a second dose of anaesthetic as the first evidently wasn't enough or not working. Then she put the second bipsy needle in.
It was absolute agony. I cried out again and started to get very very stressed. Lovely Kevin came over and put his hand on my back and told me to breathe. I thought I was going to be vomit with the intense pain so he put a little dish under my face to be sick in, I was hot and cold and that horrible hot before you vomit. Then back into the machine. Then out for another needle, then in again. Each time the needle caused me to cry out in pain, it was like never-ending torture. I ended up weeping, defeated the whole time, I was exhausted. Tried to keep my body from sobbing as I knew I had to stay still. I think this happened 5 times, the needle and in and out stuff, I don't know. Somehow it all blurred into one whole nightmare experience.
I dropped the alarm because I was too tempted to stop the test, it hurt so much. The doctor asked me if I wanted to stop, I said no I have to do this. Carry on.
Once all the needles were in place (I think there were 5, maybe 6, I don't know), the biopsy process started and I felt a sort of aspiration, something being sucked out of my breast and there was a noise, as the doctor said there would be. The first one hurt a bit, I could feel the flesh being sucked out, but it was just unpleasant. The rest I didn't feel so much and the last 2 I didn't feel at all, just the noise and a weird sensation. I figure the anaesthetic didn't reach where the first few needles went in. Surely she should have tested my sensitivity before trying to put them in so she knew I was numb?
All this time I was strapped to the bed, face down. I couldn't see what was going on, my gown had exposed my bottom as it was pushed to the side (I had my knickers on) but I felt so so vulnerable and terrible.
Finally she said 'it's done, we have the samples'. I could hear her ordering about the staff telling them to get test tubes, plasters....I then sat up and she said 'don't look'. So I did!! The machine was covered in blood, my bright red blood with pools of it on the left where the biopsy had been taken. I could see she was panicking and she told me that I had moved during one of the needles so the opening was 'larger than expected' and was bleeding. She didn't want to stitch the bleeding but put several sticky strips on it then the staff went away and came back with a huge sticky bandage that she stuck on. I think I had been pretty severely damaged. I had blood on my stomach, although they tried to mop it up.
Just to show you that I'm not a moaning Minnie, here's a photo of where they did the biopsy after I'd taken the bloodied bandage off (1 day later). This cannot be normal. I have to wait for these sticks that are holding the wounds together to drop off, apparently.
I said I was sorry to have shouted but it hurt so much, I couldn't help myself. She said that she was on the Cancer Commission when they discussed my case and, as a doctor, she knew what a biopsy was (ie, how painful it was I think) and she wanted me to wait 6 months as the 'thing' might have gone away by itself. But she said 'no, you wanted a biopsy at all costs, so you got one'. I said I had already waited 2 months and the thing was still there and I was so stressed that I wanted to know if I had cancer again or not, surely she could understand? No reply, just frantic trying to stop the blood from coming.
I stumbled towards the room where Kevin took out my line gently and thanked him for his kindness to me. Said goodbye and I was free to go. dh was there waiting for me. He said he could hear me shouting in pain. I shook and shivered all the way home, and cried. I think I was in shock.
We ordered a curry and I was allowed to watch a stupid girl film to relax me.
The area hurt like hell and I took a lot of painkillers that evening (Doliprane not Aspirin) and I slept well, despite being uncomfortable.
Today I did absolutely nothing. Cancelled my class and watched tv, ate chocolate and crisps. I am exhausted and weepy and in pain.
There, I just wanted to get it all written down. This was an absolutely horrible experience - much worse than the first 2 biopsies and I am feeling very unsettled and exhausted a defeated (not sure why). I'm just glad it's over now. The experience was horrendous.
Wednesday 30 March 2016
Jour J
It's my biopsy under MRI tomorrow. Not sure I'll sleep tonight. Glad to be working tomorrow to keep my mind off things and get me to 16h25.
I cried tonight, I suddenly had an attack of nerves. My son came in to the bedroom and gave me the most lovely long hug, saying nothing. What a sweetheart.
Nice messages from my friends who'd very kindly remembered the date. Wish me luck. Hope for a confirmation that all is WELL.
I cried tonight, I suddenly had an attack of nerves. My son came in to the bedroom and gave me the most lovely long hug, saying nothing. What a sweetheart.
Nice messages from my friends who'd very kindly remembered the date. Wish me luck. Hope for a confirmation that all is WELL.
Friday 11 March 2016
Date is set, at last
I persuaded dh to take me to the hospital on my only afternoon off. It's quite near and by far the largest hospital building that I've ever been in - very daunting. However, it was surprisingly easy to find where I needed to go thanks to a helpful reception person.
Found the office for appointments and duly handed over the results of MRI, bloods, mammo, echo etc. Asked if I could speak to someone that day but the doctor wasn't there. They promised to discuss the results the following day and call me. They were quite friendly but I kicked myself for not asking them to call me asap as I was so stressed. I did manage to get the doctor's name though.
In any case, it wasn't necessary as they called me back the next day, as promised. Nice. I have an appointment on 31st March for a biopsy under MRI.
I feel happy that I don't have to fight and push any more although 3 weeks is a long time to stress! I tried to read something into the appointment not being straight away - maybe they don't think it's urgent, but I gave that up because maybe 3 weeks is the normal time for an appointment; it certainly was at the last MRI clinic. So maybe it's just normal. But it's not a rush, is it? Yep, there I go again...............
And btw, it's Henri Mondor not Henri Mont d'or....quite liked the idea of Henri sitting on his mount of gold, but that's not how you spell it!
Started my running programme again this week, I'm back on track, even if my thighs are sore!
Found the office for appointments and duly handed over the results of MRI, bloods, mammo, echo etc. Asked if I could speak to someone that day but the doctor wasn't there. They promised to discuss the results the following day and call me. They were quite friendly but I kicked myself for not asking them to call me asap as I was so stressed. I did manage to get the doctor's name though.
In any case, it wasn't necessary as they called me back the next day, as promised. Nice. I have an appointment on 31st March for a biopsy under MRI.
I feel happy that I don't have to fight and push any more although 3 weeks is a long time to stress! I tried to read something into the appointment not being straight away - maybe they don't think it's urgent, but I gave that up because maybe 3 weeks is the normal time for an appointment; it certainly was at the last MRI clinic. So maybe it's just normal. But it's not a rush, is it? Yep, there I go again...............
And btw, it's Henri Mondor not Henri Mont d'or....quite liked the idea of Henri sitting on his mount of gold, but that's not how you spell it!
Started my running programme again this week, I'm back on track, even if my thighs are sore!
Tuesday 8 March 2016
And the saga continues
I am seriously disillusioned with the healthcare system. They say it's the best in the world and maybe it is in terms of curing people and treating them but it's TOTALLY crap dealing with actual human beings.
I'd been waiting for a call from the hospital for an appointment for the MRI. After I'd waited a week, I called the Vero the oncologists secretary. She said she'd chase the hospital. Evidently she did (thank you Vero, thank you). I received the long-awaited call whilst I was in a shop buying clothes. I stopped everything and my knees and arms went weak. However, no need to get excited. I was told that they 'don't give you an appointment just like that, the drs need to see your test results'. In fact, the conclusions had been already faxed by the trusty Vero but I have the actual test xrays and printouts.
I now have to take that half day off work and go to Henri Mont d'or and drop them off so the doctors can consult and 'maybe' give me an appointment. For fucks sake. I could have done that ages ago, certainly last week. I've lost yet another week at least because of administration.
I was too shocked to be angry at the (not very nice) woman telling me this but when I put the phone down I burst into tears. I left the shop and met dh then noisily sobbed in the car, mascara running down my face, voicing all my fears out there.
I am so stupid, I keep imagining myself doing chemo - they say imagine things and they will come true. Well, before this MRI, I did imagine myself with a flat tummy and same sized breast mounds and I imagined myself on the beach in a swimming costume, not afraid, not covering myself up, proud and feeling good. I was getting used to this image and it was positive and good. Now it's all negative. I am scared.
There's someone I know who's just been diagnosed and a friend of a friend, both going to go through this. It's not putting me in a good place thinking about them and the hard time they're going to have ahead of them.
I'm not sleeping. I can't concentrate. Cancer keeps coming into my head, even when I'm teaching. This is awful.
I'd been waiting for a call from the hospital for an appointment for the MRI. After I'd waited a week, I called the Vero the oncologists secretary. She said she'd chase the hospital. Evidently she did (thank you Vero, thank you). I received the long-awaited call whilst I was in a shop buying clothes. I stopped everything and my knees and arms went weak. However, no need to get excited. I was told that they 'don't give you an appointment just like that, the drs need to see your test results'. In fact, the conclusions had been already faxed by the trusty Vero but I have the actual test xrays and printouts.
I now have to take that half day off work and go to Henri Mont d'or and drop them off so the doctors can consult and 'maybe' give me an appointment. For fucks sake. I could have done that ages ago, certainly last week. I've lost yet another week at least because of administration.
I was too shocked to be angry at the (not very nice) woman telling me this but when I put the phone down I burst into tears. I left the shop and met dh then noisily sobbed in the car, mascara running down my face, voicing all my fears out there.
I am so stupid, I keep imagining myself doing chemo - they say imagine things and they will come true. Well, before this MRI, I did imagine myself with a flat tummy and same sized breast mounds and I imagined myself on the beach in a swimming costume, not afraid, not covering myself up, proud and feeling good. I was getting used to this image and it was positive and good. Now it's all negative. I am scared.
There's someone I know who's just been diagnosed and a friend of a friend, both going to go through this. It's not putting me in a good place thinking about them and the hard time they're going to have ahead of them.
I'm not sleeping. I can't concentrate. Cancer keeps coming into my head, even when I'm teaching. This is awful.
Tuesday 1 March 2016
Not even near getting an appointment.....
Finally, as I'd been steeling myself having to visit the big hospital with my file, the oncologist's secretary, Veronique (we are now on first name terms) called me back on Friday. She'd spoken (as promised) to the oncologist and she said 'leave it in our hands, I'll get back to you'. That was really great news, frankly. I told her, again, that I would take an appointment whenever I could and would cancel my work if necessary.
Anyway, today she updated me on a message saying that she'd faxed through my file to the hospital and now it's up to the doctors there to decide if and when I get an appointment and how urgent it is. Unfortunately, it's out of her hands but she's going to follow up and let me know as soon as she has news.
I was pretty depressed by this, although I totally appreciated her help. It's just more waiting and more waiting. I am strung tight as a piano wire and eating myself to death in the meantime.........
Anyway, today she updated me on a message saying that she'd faxed through my file to the hospital and now it's up to the doctors there to decide if and when I get an appointment and how urgent it is. Unfortunately, it's out of her hands but she's going to follow up and let me know as soon as she has news.
I was pretty depressed by this, although I totally appreciated her help. It's just more waiting and more waiting. I am strung tight as a piano wire and eating myself to death in the meantime.........
Thursday 25 February 2016
New bras
I also have to thank none other than C&A today! I'd just finished my
lesson and on a whim slipped into the store as there was a hot red suede
jacket on the rails that I'd been lusting over (I know, I don't often (ever?)
lust over stuff in C&A, but it was a nice piece and good quality and well priced).
Anyway, decided to try it on as the fitting rooms are never packed
there and you can take as many items in as you want to. On the way, I spotted the lingèrie section. A place
where I don't usually stop now (actually I usually avert my eyes and run
past). However, I did stop today to finger a particularly pretty pale pink satin
bustier and decided to try it on.
As I tried it on, I realised that one of the reasons I was so disappointed about my operation was that I was absolutely dying to get out of my medical prothesis-holding bra which gives me the silhouette of a nursing bra, all saggy and undefined. Since my weight loss, my breasts are both smaller and when I've dared to try on 'normal' bras, they ride up as I really don't have much 'up there' to keep them comfortable and stop the underwiring digging in and the back fat which was badly sewn after the op flops over the side of small bras (sorry tmi).
However, it seems that the bustier is the perfect thing! I had to try B cups as there were no A cups to go with my back size (if you're a guy reading this, ask your girlfriend to explain this, gals, you know what I mean, don't you?)
There were lots of positive points:-
- with pre-formed cups, my tiny breast mounds sit a little lost, not exactly touching the sides but almost and a bit in some places, but not too lost that the cups would squash and look reeeeallly weird under my clothing, they will keep their shape (I think)
- the longer size of the bustier means that it doesn't ride up, even when I don't wear my prothesis
- the higher and longer sides mean that my back fat and bad scarring is contained more or less
- the balconette type bra actually pushes up the very little that I have so it looks like a very little something
- I don't have to wear my plastic prothesis - first time in 2 years!
- I have a shape of two breast type mounds under my clothes (I tried them on under a T shirt to test) instead of a spread over my chest; it looks much neater and more feminine.
- I purchased two in the end but my favourite is the shell-pink satin one with pink bows on - so feminine and pretty.
Here they are (the pink looks a bit orange-ey but think seashell pink, delicate, pretty......
Oh so different from my nude, baggy number with pockets that's too large for me.
Why didn't I do this before you ask? Well, I was waiting - waiting to have the operation and waiting for that day when I had two breast mounds the same size, waiting to slip myself into any little lacy number that came my way without pre-formed cups. I was going to spend some serious money on my first bra for my new shape. It was going to be an EVENT!
And I didn't buy another one at the nice bc lingerie shop because I figured I would have the operation and it would be a waste of money as it would be too small and I wouldn't need pockets any longer. Those bras are really expensive - I think I paid over 70€ for mine. I know M&S do them much cheaper but I could never fit properly into their mastectomy bras, I did try.
The normal bras in C&A were very affordable at 17€ and 19€ and I feel like the satin one is like a proper movie star's underclothes.
I'll be trying out my new 'outfits' tomorrow (after a dry run in front of my mirror tonight). As I still have pain on the scars (yes, over 2 yrs on), I'll not wear them all day, I think they might hurt after a few hours, but it will feel different and I won't feel like I'm in a nursing/medical bra with the corresponding silhouette. It will be a good step and will help me get on with the situation that I find myself in right now.
As I tried it on, I realised that one of the reasons I was so disappointed about my operation was that I was absolutely dying to get out of my medical prothesis-holding bra which gives me the silhouette of a nursing bra, all saggy and undefined. Since my weight loss, my breasts are both smaller and when I've dared to try on 'normal' bras, they ride up as I really don't have much 'up there' to keep them comfortable and stop the underwiring digging in and the back fat which was badly sewn after the op flops over the side of small bras (sorry tmi).
However, it seems that the bustier is the perfect thing! I had to try B cups as there were no A cups to go with my back size (if you're a guy reading this, ask your girlfriend to explain this, gals, you know what I mean, don't you?)
There were lots of positive points:-
- with pre-formed cups, my tiny breast mounds sit a little lost, not exactly touching the sides but almost and a bit in some places, but not too lost that the cups would squash and look reeeeallly weird under my clothing, they will keep their shape (I think)
- the longer size of the bustier means that it doesn't ride up, even when I don't wear my prothesis
- the higher and longer sides mean that my back fat and bad scarring is contained more or less
- the balconette type bra actually pushes up the very little that I have so it looks like a very little something
- I don't have to wear my plastic prothesis - first time in 2 years!
- I have a shape of two breast type mounds under my clothes (I tried them on under a T shirt to test) instead of a spread over my chest; it looks much neater and more feminine.
- I purchased two in the end but my favourite is the shell-pink satin one with pink bows on - so feminine and pretty.
Here they are (the pink looks a bit orange-ey but think seashell pink, delicate, pretty......
Oh so different from my nude, baggy number with pockets that's too large for me.
Why didn't I do this before you ask? Well, I was waiting - waiting to have the operation and waiting for that day when I had two breast mounds the same size, waiting to slip myself into any little lacy number that came my way without pre-formed cups. I was going to spend some serious money on my first bra for my new shape. It was going to be an EVENT!
And I didn't buy another one at the nice bc lingerie shop because I figured I would have the operation and it would be a waste of money as it would be too small and I wouldn't need pockets any longer. Those bras are really expensive - I think I paid over 70€ for mine. I know M&S do them much cheaper but I could never fit properly into their mastectomy bras, I did try.
The normal bras in C&A were very affordable at 17€ and 19€ and I feel like the satin one is like a proper movie star's underclothes.
I'll be trying out my new 'outfits' tomorrow (after a dry run in front of my mirror tonight). As I still have pain on the scars (yes, over 2 yrs on), I'll not wear them all day, I think they might hurt after a few hours, but it will feel different and I won't feel like I'm in a nursing/medical bra with the corresponding silhouette. It will be a good step and will help me get on with the situation that I find myself in right now.
frustration and friends
Well, I think a good night out at the comedy club with my 2 lovely girlfriends did me the world of good last night. And somehow, I think I'm starting to turn a corner on all of this.
Yesterday I spent a fruitless day off calling the hospitals reccomended by the oncologist for the biopsy. Fruitless, yes, so fruitless and much as I'd anticipated. I've been here before.
The first clinic, after I'd called several times, said they didn't do that kind of test. Great. I called the big hospital in Creteil several times and got no answer or was connected and got no answer, was cut off and finally had the receptionist who said when I asked for the MRI dept (I kid thee not) "oh, MRI department, AGAIN, there are so many of you today, it's ridiculous". This is the main switchboard of a huge, really huge departmental, capital city hospital. wtf, seriously. Then the MRI department didn't answer (again). Phoned surgeon's sec hoping to get the nice receptionist and was going to ask her to make the call for me. Sadly came across the less nice, slightly snippy one, who, when I explained I was phoning just to update the surgeon on the latest decision, said I was to call him myself - here was the number.
And then called the oncologist secretary and asked her to make the appointment for me as I was having no luck. She said she'd check with the oncologist tomorrow and get back to me to see if she was authorised to do that. Well, it's tomorrow now and nobody has come back to me. Surprise.
I called my pal who came to the MRI with me about something else, but she asked me straight away if I'd got an appointment yet. She demanded the numbers and said she'd call herself. Awwww.
Also, posted my support on a member website where someone had just been diagnosed bc and was putting it out there. Good for her, the only way to get through this is to be surrounded by love and I hope she gets lots of it coming her way. I'm not sure how supportive I was as I don't feel I can really cope with someone elses pain right now, alongside my own (put your own lifejacket on before putting someone elses on otherwise you'll both drown), but I hope I helped a bit, I tried. I felt so badly for her and remembered the shock and fear I had when I was diagnosed.
This had the knock-on effect of putting my current situation out there to people who know me (although I didn't go into details of course) and I was really touched to receive some really supportive, kind, helpful messages, which made me feel very warm and loved.
My dear pal has more stamina than I do. She managed to speak to someone in the MRI department and they said 'we don't just make appointments like that over the phone, we need to see your dossier', so it looks like I'll have to lose a day's pay and go to the hospital myself in order to make the appointment. Ho bloody hum.
On the whole though, all of this came together to make me a little more optimistic today. I've made the decision to go ahead with the biopsy. I need to know. The operation, well, that's very sadly taken a back seat for now, I need to be well to do it, frustrating though it is. I'm not really convinced that it will ever happen to be honest.
Yesterday I spent a fruitless day off calling the hospitals reccomended by the oncologist for the biopsy. Fruitless, yes, so fruitless and much as I'd anticipated. I've been here before.
The first clinic, after I'd called several times, said they didn't do that kind of test. Great. I called the big hospital in Creteil several times and got no answer or was connected and got no answer, was cut off and finally had the receptionist who said when I asked for the MRI dept (I kid thee not) "oh, MRI department, AGAIN, there are so many of you today, it's ridiculous". This is the main switchboard of a huge, really huge departmental, capital city hospital. wtf, seriously. Then the MRI department didn't answer (again). Phoned surgeon's sec hoping to get the nice receptionist and was going to ask her to make the call for me. Sadly came across the less nice, slightly snippy one, who, when I explained I was phoning just to update the surgeon on the latest decision, said I was to call him myself - here was the number.
And then called the oncologist secretary and asked her to make the appointment for me as I was having no luck. She said she'd check with the oncologist tomorrow and get back to me to see if she was authorised to do that. Well, it's tomorrow now and nobody has come back to me. Surprise.
I called my pal who came to the MRI with me about something else, but she asked me straight away if I'd got an appointment yet. She demanded the numbers and said she'd call herself. Awwww.
Also, posted my support on a member website where someone had just been diagnosed bc and was putting it out there. Good for her, the only way to get through this is to be surrounded by love and I hope she gets lots of it coming her way. I'm not sure how supportive I was as I don't feel I can really cope with someone elses pain right now, alongside my own (put your own lifejacket on before putting someone elses on otherwise you'll both drown), but I hope I helped a bit, I tried. I felt so badly for her and remembered the shock and fear I had when I was diagnosed.
This had the knock-on effect of putting my current situation out there to people who know me (although I didn't go into details of course) and I was really touched to receive some really supportive, kind, helpful messages, which made me feel very warm and loved.
My dear pal has more stamina than I do. She managed to speak to someone in the MRI department and they said 'we don't just make appointments like that over the phone, we need to see your dossier', so it looks like I'll have to lose a day's pay and go to the hospital myself in order to make the appointment. Ho bloody hum.
On the whole though, all of this came together to make me a little more optimistic today. I've made the decision to go ahead with the biopsy. I need to know. The operation, well, that's very sadly taken a back seat for now, I need to be well to do it, frustrating though it is. I'm not really convinced that it will ever happen to be honest.
Sunday 21 February 2016
Staff decision
So here I am again. Waiting for the oncologist on my own with a waiting room full of sick people with chemo scarves on, bags of xrays labelled 'Philippe pumouns' and people getting ill in the waiting room. I waited just over an hour this time and my appointment was over in less than 10 minutes - she had to leave as another patient fell ill during my appointment. She did have time to tell me that the Staff wanted me to wait 4 months for another MRI to see if the 'thing' has grown. My oncologist said that I was 'in a hurry' to get my reconstruction so they needed to propose something else (I pointed out that even if I wasn't 'in a hurry' to get the op, I would be 'in a hurry' to find out what the fuck is in my breast that shouldn't be there). So they said I have to get a biopsy (expected that) during an MRI (didn't expect that) as the thing is so small 3,5mm. Apparently it was 'unanalysable'. But the thing is, when I was first diagnosed, the cancer infiltrant (the sort that moves, the sort that you don't want to have anywhere in your body, ever), was 5mm long, so what's stopping it being the same thing again, eh?
The great thing about this fabulous biopsy, which so effortlessly combines my two least favourite tests, is that it's only available in two places in Ile de France and there's a 2 month waiting list for the test (at least). So, they are making me wait 2 months in any case.....
Frankly, right now, I feel like giving up and not getting the test, fighting for a date, dealing with doctors receptionists, getting the products, stripping off, waiting for the results, the stress, missing work, begging my dh to come with me etc etc I have almost had enough. I am thinking that maybe this is just not meant to be. Maybe I am not meant to have this operation, maybe I have to stay maimed and ugly all my life. Maybe I will never be free of this shadow that cancer is making on my life. Maybe that's it, I've had 2 years (not carefree by any stretch of the imagination), but two years feeling positive that it's all behind me, planning for the future, making a huge effort to put it all to one side, feeling confident, losing weight, trying to re-establish my work. And that's all I'm going to get. The rest is the slow slope into my death when the cancer finally does the job it tried to start. Right now, nothing seems worth doing or trying for. My house is a mess, I have a heavy cold, my hair is a mess, my body is a mess, I've stopped running, trying. I hate being at home, I hate being with my children, I hate my house and I can't be bothered to tidy or clean it. (Things are so bad that dh even hoovered this morning, this is rare) I can find no pleasure in anything much and I know I'm snapping at everyone.
I don't know if anyone is reading this but if you are, sorry for being down but I just can't see the point of it all any more.
Tuesday 16 February 2016
Angry me
I'm angry, disappointed and scared. Bad cocktail. I wasn't so bothered about the change in my body, I just wanted my breast mounds to be the same size and mostly, really truly, to say goodbye to my tango with cancer and get on with my life, stop this life in suspension, go to the pool or the beach and not feel absolutely ashamed and hide myself, put my bra on without sticking a bit of plastic in it beforehand - every single morning I am reminded of that cancer. No matter how much I diet and exercise (up to 20 mins running now, yeh!), my body still bears the ugliness and scars and my mind is frightened. No, fellow BC peeps or non BC peeps (you non C peeps should know better than to tell us how to feel about our 'gift' that was cancer), they are not scars of 'bravery' or 'survival', fuck that, they are scars that were necessary to keep me in this world, to stop my kids growing up without a Mum. You think I'd choose to have them? And to have this constant worry in my life? They are ugly and I am ugly.
I don't want to be brave any more. I don't want to have to be brave any more. Let me get off, please, let me be weak.
I had a horrific dream last night and I woke up crying. Thought I was dealing but am not, evidently.
I don't want to be brave any more. I don't want to have to be brave any more. Let me get off, please, let me be weak.
I had a horrific dream last night and I woke up crying. Thought I was dealing but am not, evidently.
Monday 15 February 2016
Back to oncology
dh came with me to the appointment. We waited 2 hours. 2 friggin hours of my life wasted in that dull little room on those uncomfortable chairs fretting away.
Anyhow, finally got to see the lady. Explained the situation. She took my previous mammo, MRIs etc to the radiology appointment but, as luck would have it (and honestly, I don't feel like I'm getting much of that), the head of Radiology was on holiday. She gave me the line of 'please don't worry, it's probably nothing' - let's hope it is, I really don't want to prove her wrong, I want her to be right. Examined me and we had a chat.
In her favour, although she must have been desparate to get home (I was the last meeting of the day) she took the time to listen and I explained how I felt about the meeting of the Staff - they had wanted me to get a mastectomy and cancelled the original surgery I had planned which really devastated me at that time, they told me I had to wait 2 years for this op (which looks like it's never going to happen anyway) when I had already waited a year and had been told that this was enought time. Don't hold out much hope they will give me any good news, frankly. I explained that they don't know me, they just have the facts in front of them (which in retrospect might be the very point of the Staff, but I was too far frantic to acknowledge that). She said that she was my advocate, and that felt reassuring. I told her I wanted (well, not really wanted like I want a pair of Uggs slippers or the new Chanel nail varnish but y'know...) a biopsy to put my mind at rest, I definitely didn't want to wait 6 months for a follow up, only to find that the bright spot was exactly like it was the time before (3,5mm), I wanted to know if it was a problem and to deal with it or I wanted the ok and the go ahead for the op - soon, so I can turn the page. She was listening but I'm not sure that my 'wish list' will have much truck with Staff.
We'll see, won't we?
To cheer this post up, here is a picture of the Chanel nail varnish that I want (but not in the same way as I want a biopsy)
Anyhow, finally got to see the lady. Explained the situation. She took my previous mammo, MRIs etc to the radiology appointment but, as luck would have it (and honestly, I don't feel like I'm getting much of that), the head of Radiology was on holiday. She gave me the line of 'please don't worry, it's probably nothing' - let's hope it is, I really don't want to prove her wrong, I want her to be right. Examined me and we had a chat.
In her favour, although she must have been desparate to get home (I was the last meeting of the day) she took the time to listen and I explained how I felt about the meeting of the Staff - they had wanted me to get a mastectomy and cancelled the original surgery I had planned which really devastated me at that time, they told me I had to wait 2 years for this op (which looks like it's never going to happen anyway) when I had already waited a year and had been told that this was enought time. Don't hold out much hope they will give me any good news, frankly. I explained that they don't know me, they just have the facts in front of them (which in retrospect might be the very point of the Staff, but I was too far frantic to acknowledge that). She said that she was my advocate, and that felt reassuring. I told her I wanted (well, not really wanted like I want a pair of Uggs slippers or the new Chanel nail varnish but y'know...) a biopsy to put my mind at rest, I definitely didn't want to wait 6 months for a follow up, only to find that the bright spot was exactly like it was the time before (3,5mm), I wanted to know if it was a problem and to deal with it or I wanted the ok and the go ahead for the op - soon, so I can turn the page. She was listening but I'm not sure that my 'wish list' will have much truck with Staff.
We'll see, won't we?
To cheer this post up, here is a picture of the Chanel nail varnish that I want (but not in the same way as I want a biopsy)
Fucking bloody blood test
OK, so I was worried about the MRI injection, knowing my adverse reactions to them, but that went surprisingly well. The thing I wasn't expecting was for my pre-oncologist appointment blood test to be a massacare. It was the owner of the laboratory who took the blood and she really should have known better. I asked her to use a baby needle, as it was usually necessary. She said 'we'll see' and proceeded to jab the fuck out of my arm. This is the result - and this is one week after the short blood test.
Look, pretty isn't it? And no filters! I went back to complain, showing them the MRI very faint bruise next to it. I explained I had asked for a baby needle but they had ignored me, too much in a hurry methinks. Of course, there was nothing to do but say sorry, which the receptionist did. I shall not go back there, despite that it's such a convenient place.
Look, pretty isn't it? And no filters! I went back to complain, showing them the MRI very faint bruise next to it. I explained I had asked for a baby needle but they had ignored me, too much in a hurry methinks. Of course, there was nothing to do but say sorry, which the receptionist did. I shall not go back there, despite that it's such a convenient place.
Surgeon pre-surgery (not) appointment
Luckily I had an appointment with the surgeon the day following the upsetting MRI. He decided to postpone/cancel the operation and to seek the advice of Staff (the Cancer Committee for my area). I thought it was the right decision because:-
a) If he had gone ahead and injected fat into my breast mounds, the bright spot would relocate and possibly be lost and never analysed.
b) It would cause me more worry in the long term than pleasure in actually having the same-sized breast mounts again.
c) Although he thought the MRI doctor was covering his arse (his words were kinder), he had to cover his too.
d) Although he thought it was 'probably nothing' (yep, heard that one before haven't we?), in the classification the dr had given me - BIRADS 3 - there is still room for a (albeit small) doubt about the findings. If he had classified it BIRADS 2, the surgery would still go ahead.
I cried - with frustration and fear - as he started talking about having to have a mastectomy and chemo if anything was found - as if I'd got away lightly last time (guess I feel that I did in fact). And there we were, kindly ushered out.
His secretary was an absolute LOVE. Without really knowing what the situation was, she effectively dealt with cancelling all aspects of the operation and made me a speedy meeting with the oncologist.
I walked out knowing in my heart that although this was a feckin disaster for my morale, it was the right decision.
a) If he had gone ahead and injected fat into my breast mounds, the bright spot would relocate and possibly be lost and never analysed.
b) It would cause me more worry in the long term than pleasure in actually having the same-sized breast mounts again.
c) Although he thought the MRI doctor was covering his arse (his words were kinder), he had to cover his too.
d) Although he thought it was 'probably nothing' (yep, heard that one before haven't we?), in the classification the dr had given me - BIRADS 3 - there is still room for a (albeit small) doubt about the findings. If he had classified it BIRADS 2, the surgery would still go ahead.
I cried - with frustration and fear - as he started talking about having to have a mastectomy and chemo if anything was found - as if I'd got away lightly last time (guess I feel that I did in fact). And there we were, kindly ushered out.
His secretary was an absolute LOVE. Without really knowing what the situation was, she effectively dealt with cancelling all aspects of the operation and made me a speedy meeting with the oncologist.
I walked out knowing in my heart that although this was a feckin disaster for my morale, it was the right decision.
Friday 5 February 2016
MRI merde
So the day arrived. My lovely friend and colleague, Louise, offered to accompany me as she lives quite close to the Centre. dh had to look after the children (apparently). So, she picked me up and we raced to the centre. And waited.
It brought back some horrible memories, fainting in the reception, shouting at the receptionist to get an appointment for a biopsy without two weeks wait, needles, needles and more needles. It was emotional to go through the doors again. Thank goodness I had my friend with me. I told her that it was brave to accompany me as it wasn't a slam dunk that there would be good results. She was positive and told me I should be too. I am very cautious about positivity where cancer is concerned. I don't have many positive stories to tell after my testing experiences, although I have had a good two years of clear mammograms and relative peace of mind, so, yes, positive.
The same guy injected me as before. He was just as nice as ever, explaining what would happen, asking me how I feel, what I was worried about, what I remembered would happen. I had remembered quite well in fact. He injected me very cleanly and it only hurt a bit (although I have a whopping big bruise now 2 days later). He ushered me through and I was face down on the machine and told not to move. I had ear plugs and earphones to protect me from the noise and I took my friend's advice and counted backwards whilst it was all going on around me. Honestly, it passed fairly quickly and uneventfully. He helped me down, head spinning a bit but, really fine.
Then the shit hit the fan. He informed me that the doctor wanted to do an ultrasound afterwards. I said 'why, what's wrong?' he said, it's ok, he just wants an ultrasound. Alarm bells started ringing loud and clear. Back into the situation I knew so well - more tests because there's something wrong but nobody will tell you why. I went through to the ultrasound room close to tears. Not again, not again. Doctor breezes in. I asked him outright what was the problem. He said they'd just found a bright spot on the MRI (and we know what that means, don't we?) I asked him if this would stop me from having the operation and he said absolutely not, I should go for it. Then after a speedy ultrasound I had to have a mammogram too. By this time I was in tears and once I got into the changing room, I was crying good and proper. He popped his head round the door and said 'ok mammogram clear, no need to worry, you just need to be checked up on in 6 months with another MRI'. Bam, he'd gone.
I stumbled into the reception in tears. My poor friend didn't know what had hit her. To her great credit, she insisted on having another word with the doctor so he could explain properly what was going on. She asked the questions, I was too tearful to speak. She asked good questions and the doctor was as honest as doctors are (ie, not very) but he was very reassuring and said by all means I should go ahead with the operation, he just couldn't let me go without suggesting a follow-up in 6 months, it was probably nothing blah blah blah. I felt (stupidly) reassured because little did I know, he was about to sign the death warrant on my longed-for operation.
My friend kindly drove me home and tried to talk some sense into me, get me to calm down, be zen. I feel so grateful she was with me.
I felt numb and bitterly disappointed and very scared. I haven't slept so well since.
It brought back some horrible memories, fainting in the reception, shouting at the receptionist to get an appointment for a biopsy without two weeks wait, needles, needles and more needles. It was emotional to go through the doors again. Thank goodness I had my friend with me. I told her that it was brave to accompany me as it wasn't a slam dunk that there would be good results. She was positive and told me I should be too. I am very cautious about positivity where cancer is concerned. I don't have many positive stories to tell after my testing experiences, although I have had a good two years of clear mammograms and relative peace of mind, so, yes, positive.
The same guy injected me as before. He was just as nice as ever, explaining what would happen, asking me how I feel, what I was worried about, what I remembered would happen. I had remembered quite well in fact. He injected me very cleanly and it only hurt a bit (although I have a whopping big bruise now 2 days later). He ushered me through and I was face down on the machine and told not to move. I had ear plugs and earphones to protect me from the noise and I took my friend's advice and counted backwards whilst it was all going on around me. Honestly, it passed fairly quickly and uneventfully. He helped me down, head spinning a bit but, really fine.
Then the shit hit the fan. He informed me that the doctor wanted to do an ultrasound afterwards. I said 'why, what's wrong?' he said, it's ok, he just wants an ultrasound. Alarm bells started ringing loud and clear. Back into the situation I knew so well - more tests because there's something wrong but nobody will tell you why. I went through to the ultrasound room close to tears. Not again, not again. Doctor breezes in. I asked him outright what was the problem. He said they'd just found a bright spot on the MRI (and we know what that means, don't we?) I asked him if this would stop me from having the operation and he said absolutely not, I should go for it. Then after a speedy ultrasound I had to have a mammogram too. By this time I was in tears and once I got into the changing room, I was crying good and proper. He popped his head round the door and said 'ok mammogram clear, no need to worry, you just need to be checked up on in 6 months with another MRI'. Bam, he'd gone.
I stumbled into the reception in tears. My poor friend didn't know what had hit her. To her great credit, she insisted on having another word with the doctor so he could explain properly what was going on. She asked the questions, I was too tearful to speak. She asked good questions and the doctor was as honest as doctors are (ie, not very) but he was very reassuring and said by all means I should go ahead with the operation, he just couldn't let me go without suggesting a follow-up in 6 months, it was probably nothing blah blah blah. I felt (stupidly) reassured because little did I know, he was about to sign the death warrant on my longed-for operation.
My friend kindly drove me home and tried to talk some sense into me, get me to calm down, be zen. I feel so grateful she was with me.
I felt numb and bitterly disappointed and very scared. I haven't slept so well since.
Operation prep
I haven't blogged for a while about my personal situation because I was waiting to talk about my reconstruction operation and the successful injections of fat into my breast mounds, and my new flat stomach and the new page I can turn in my life, I didn't want to blog as I didn't want to jinx the operation. Well, needn't have worried - my body has jinxed it all by itself.
I had a meeting with the surgeon in December. We fixed the date of 9th February which fitted me perfectly meaning I didn't have to miss too many work commitments and would have around 5 days to recover before teaching again. Perfect. I had to do an MRI beforehand to check all the cancer was clear before the surgeon pumped a load of fat into my breast area (if there's any cancer there, an injection of fat can, apparently, accelerate the development of cancer.) He was very pleased with my big weight loss and made a joke that I shouldn't lose any more as he won't have any fat to take - ha ha ha!
Braved the snippy telephone receptionists and managed to get an MRI appointment on 3rd February - very close to the operation date but do-able and nothing available earlier. I didn't have any choice as to where I did it as the surgeon wanted me to go back to the same place I had one before the cancer was confirmed.
Had a meeting with the anesthesiologist in the hospital where my oncologist is based as that's where the surgeon operates now. She was absolutely lovely, didn't insist I had a blood test before the operation as I'd already had several operations, and even went as far as asking me how I was feeling on approaching the operation - stressed was my answer - but she reassured me and was just lovely. Can't say the same about her bitcvh secretary nor the same in admissions. I ended up saying 'I hear you, I understand you, you do not need to shout at me'. I felt really bruised when I came away, those women are in such powerful positions and if they were nice it would really change the patients' experience. Shame they mis-use their power.
Next stop MRI. Asked the centre to fax the prescription to the chemist so I could pick up the product for injections and the special syringes. Took a while for the fax to arrive - several phone calls and the chemist had lots of questions about the products so I ended up picking them up just before I went off to the test.
I had a meeting with the surgeon in December. We fixed the date of 9th February which fitted me perfectly meaning I didn't have to miss too many work commitments and would have around 5 days to recover before teaching again. Perfect. I had to do an MRI beforehand to check all the cancer was clear before the surgeon pumped a load of fat into my breast area (if there's any cancer there, an injection of fat can, apparently, accelerate the development of cancer.) He was very pleased with my big weight loss and made a joke that I shouldn't lose any more as he won't have any fat to take - ha ha ha!
Braved the snippy telephone receptionists and managed to get an MRI appointment on 3rd February - very close to the operation date but do-able and nothing available earlier. I didn't have any choice as to where I did it as the surgeon wanted me to go back to the same place I had one before the cancer was confirmed.
Had a meeting with the anesthesiologist in the hospital where my oncologist is based as that's where the surgeon operates now. She was absolutely lovely, didn't insist I had a blood test before the operation as I'd already had several operations, and even went as far as asking me how I was feeling on approaching the operation - stressed was my answer - but she reassured me and was just lovely. Can't say the same about her bitcvh secretary nor the same in admissions. I ended up saying 'I hear you, I understand you, you do not need to shout at me'. I felt really bruised when I came away, those women are in such powerful positions and if they were nice it would really change the patients' experience. Shame they mis-use their power.
Next stop MRI. Asked the centre to fax the prescription to the chemist so I could pick up the product for injections and the special syringes. Took a while for the fax to arrive - several phone calls and the chemist had lots of questions about the products so I ended up picking them up just before I went off to the test.
Tuesday 19 January 2016
Letter to David Bowie from a palliative care doctor
Apparently, David Bowie's son, Duncan, has broken his week of Twitter silence to post this thank you letter from a palliative care doctor. It is extremely moving. Made me wonder how those last moments were for Bowie, hopefully he was not alone and was feeling the love from those who were closest to him but also the love that all his fans have for him. Do read the letter, it's worth it.
http://blogs.bmj.com/spcare/2016/01/15/a-thank-you-letter-to-david-bowie-from-a-palliative-care-doctor/
http://blogs.bmj.com/spcare/2016/01/15/a-thank-you-letter-to-david-bowie-from-a-palliative-care-doctor/
Tuesday 12 January 2016
David Bowie dies of cancer
It had to happen one day and I was dreading that day - my hero (I don't use this term lightly), David Bowie died of cancer. Bastardshitbollocksfucking cancer. I know, we all have to die of something one day - but he was relatively young and that disease strikes again.
My cool Aunty Beryl (who also died of cancer (breast cancer), v.young, btw) gave me my first ever single record when I was 9 - Space Oddity with Velvet Goldmine and Changes on the B side for my Birthday. I was hooked ever since.
I remember my friend's sister (who was older than me), dressing à la Bowie in tight short jumper, short, ankle-grazing flared trousers and doing her make up just like Bowie (well, that's how I remember it anyhow). Such glamour! I longed to be metropolitan and move in his circles instead of crossing lonely fields and walking dirt tracks in my little village.
The local disco was held in the function room of an isolated pub. I was allowed to attend the hard rock version and when my Dad came to pick me up he was impressed by the long lines of us rockers doing the 'gribo' to Jean Genie (in our tight jeans and leathers of course).
Moving on, at 18 years old, my boyfriend went to Miami with a friend and I was so sad and missed him like hell, but he brought me back the Charles Shaar Murray book about Bowie. How I devoured that book and learnt everything I could about my idol. As Bowie says 'all the directions of my work have started with a book'.
And jump to a naiive country girl arriving at University in digs where she was alone and knew nobody and didn't much like most of the people on the course. I brought David Bowie knock-off tapes in the Merrion Centre in Leeds - just thought I'd try something different. He accompanied my loneliness, my doubts, my fears, my successes, my failures. Through all the friendships, he was a constant. I dyed my hair bright auburn and had it cut short to be like him and then grew it out a little in the style of 'Man Who Sold the World' David. I listened to his music night after night in my little pink room, keeping the volume down so I didn't disturb the landlady's children in the bedroom next door. David was my escape as I wrote letters home. He was my outlet for the unhappiness and isolation I felt. I bought more and more tapes and he brought me to Velvet Underground, Lou Reed, Iggy Pop, Cabaret Voltaire, Bauhaus, the Cramps, Theatre of Hate, Sixousie and the Banshees, the Sisters of Mercy etc and my favourite album ever - Another Green World by Brian Eno. He made me see how everyone is connected and how good it was to have influence and partnerships. He made me visit an art gallery for the first time, read alternative books, watch modern dance, dress not like everyone else, dye my hair. He opened my eyes big time. He opened doors for me.
Fast forward to London, the 1980s. Time of big hair and shoulderpads and consumerism. Living in a bedsit starting to make my way in the world. An exciting new world, full of promise and glitz and bright lights and career progression. Out comes 'Let's Dance' - an anthem for the 80s. And David shooting one of his videos in Maida Vale near our friend Simon's flat. Blonde, healthy, casually-suited, fizzing with energy, this was a David that fitted perfectly with the time. Chameleon as ever.
And in that same period, Live Aid and his cheeky version of Dancing in the Streets with Mick. I sported my Katherine Hamnet oversized silk T shirt with the best of them and danced along all day and then all night on Primrose Hill overlooking the fireworks. What a great day, what a great memory.
Then divorce and Bowie's album 'Black Tie White Noise' was the anthem for my getting back on my feet and getting out there again, doing new things, meeting new people. They say 'jump' and I jumped back into action! One memorable day my colleague asked me to lunch in the private dining room at work where we found none other than Mr Bowie himself dining with Eduardo Paolozzi, the famous sculptor. There were no seats left except the ones next to David Bowie, so I dared to sit next to him for a whole lunch! He said 'hello' very politely. I said 'hello' and we ate our food. I wanted to scream and shout and lick his feet and tell him how much I loved him and his music. But I didn't - he was very low key and charming to everyone. Later the waitress stole his glass and gave it to me with his unfinished perrier water and lemon in it. I kept that glass for years.
Memories of working on a boyfriend's cottage in the middle of a field all day on a hot sunny summer day, decorating with the windows wide open and Bowie's greatest hits blaring out to the sheep, singing along at the top of my voice like nobody could hear me.
And jump into more recent times. Until 2002, I had never seen Bowie live although I had always dreamt of it. Finally, after my move to France, the chance came and despite being several months pregnant at the time, I was excited to see him at the Zenith in Paris. He came on in a blaze of white lights and went straight into 'Life on Mars', acoustic version. Tears of happiness streamed down my face and I couldn't stop them. What an amazing night. I'm glad my boy got to hear Bowie live, even if he didn't actually see him!
And in 2005, my second son was born on David Bowie's Birthday.
And even more recent. I spent a wonderful weekend in London with my old schoolfriends and our visit was centered around a visit to the exhibition 'David Bowie Is' at the Victoria and Albert Museum. It was absolutely fantastic. We stayed for hours, especially in the video room at the end of the show, we were enthralled. It rekindled all my enthusiasm and fascination for Bowie. We all remember our pal Barb sitting in the video room with her exhibition headphones on singing out loud to herself, we teased her so much!
I got cancer and I told my husband that when it's my time to die, I want 'Wild is the Wind' to be played at my funeral. That's the track that moves me most with its, heartrending, passionate, sensous, melancholy.
Enjoyed the DB Is exhibition much so that I went to see the show again in Paris in the new Philharmonic Building, with my children, who were reluctant, but appreciative at the end. The show is a very fitting tribute to an unparallelled career and to a man who has opened doors for many, who has made them see that there is something else other than the mundane and it's possible to be different and exotic. I've been fortunate to know his music and have all these happy memories of it, he has touched my life as he's touched so many millions of lives. I am glad to have been alive at the same time as him. RIP David Bowie. I am so sad you have left us all.
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