Started badly. I slept in fits and starts, a little like I did at the hospital, waking every two hours and not getting back to sleep for a while. My back was agony in the bed and I couldn't find a comfortable position despite my pillows place all around under arms, legs etc. Needed the loo twice in the night as I'm not eating much but trying to drink water. Very disturbed night. At least I had an inkling of what time it was. I had no clock at the hospital so I remember hazily looking through the slits in the electronic blinds to see if the sun had come up or not. At least I have a clock here so I can situate myself in time and I'm not so floundering. Have to find a better position. Will be trying the sofabed tonight. Might be able to set up a slight incline that the hospital bed had with the large cushions. The drugs are making me have very unpleasant trippy dreams, being chased and terrified, very vivid. I could do without them frankly.
So this morning was tiring and I wanted the kids' bedrooms to have sheets changed and vacuumed and tiday before my little sis S came to stay and help us out. So I was issuing instructions and doing far too much. Believe it or not there was nobody in our house that knew how to change a duvet cover without help. At least in the end the small ones managed it together. Mabye this experience will make them a bit more autonomous? We can hope because I was exhausted and hurting afterwards.
Our neigbour came over to look after me and Loic whilst dh went to the airport to pick up little sis. It was a bit hard work making conversation as I don't know her very well but v kind of her to come round and she did Loic's homework with him no trouble and more thoroughly than I would have done!
Théo went to lunch with his mate and stayed out all afternoon, doing his homework and having fun with V & A, so that was very helpful.
Little sis arrived and that was truly lovely to have her here so we just got down to chatting away 19 to the dozen. V arrived and stayed a bit to chat which was nice. After that it was dinner time and we ate the delicious food delivered to us discreetly and quickly from someone I have never even met. She didn't come in but generously gave us several helpings of pasta and apple crumble (which were delicious) and ran away. I cried when I realised she had come and gone, it was such a lovely thing to do for someone you don't know, so heartwarming. Miss Texas and J's meals of yesterday and for lunch were also so much appreciated. One less decision to make in the day, one less thing for dh to ask me about and think about. Just fantastic.
Kids delighted to see little sis and especially all the presents she bought round (they are kids after all) and I was pretty delighted by the pressies too it has to be said.
Not eating a whole lot right now as I had a lot of sickness and dizziness today. Pills, anasthetic, not sleeping, don't know but very nasty and tiring.
Nurse came round to change bandages and she was v gentle but I wanted her to stop when she started talking about the treatment and 'oh so you'll have chemo, and perhaps not radiation, then you'll have this and this....'I just wanted her to shut up and get back to me when she'd thoroughly read my case notes. But you know, when someone is wrapping gauze round your battered and bruised body, you don't feel up to being kickass somehow. She did say that I was very bruised everywhere so I guess it's good that the bruises are coming out. I saw some on my upper arm today and I have no idea what must have caused them. I have them on my legs too from the anticoagulant injections every evening.
You might be wondering, like the nurse, what is the next step? Well, for the moment, rest and make sure my right nipple doesn't go black and drop off and not to exert my stiches so they pull.
Then on Friday I see the surgeon and he'll take off the left nipple greft to see if it's taken (or not). So I could end up with no nipples I'm realising. I guess he'll tell me if the stitches and wounds are looking ok (which the nurses have all said they are looking good) and the last bit? I think he might force me to look at my tiny, pathetic excuses for breasts in his big long mirror. I know I am not ready and I won't be ready on Friday. I feel sick every time I chance to look over them (I try to look away) when the nurse is changing the dressings, really like I want to vomit and this has nothing to do with the drugs or otherwise, doesn't help that they are covered in blood and wounds I guess but....I am trying to find a way to tell him that I don't want to look at his handiwork without offending him, because I imagine if it's gone well, he'll be proud he saved any of the breasts. Any suggestions as to how I could deal with this one please, he's pretty blunt, although kind and won't put up with any emotional stuff I think? He thought I should be changing my own dressings and mentioned to my dh that he was surprised that I wasn't ready to change them myself. I think this might have been his way of checking out how I felt about the breasts. And frankly, I cannot turn round let alone put dressings on my back drain wounds so it was pretty unrealistic. But help! It's like when someone gives you a present they have maybe made themself and have put an awful lot of effort into and they are really proud of their and you absolutely hate it, feel really disappointed and hoped for something much bigger, brighter more slick and wish they'd gone to a shop and picked out a new one.
Anyone?
Results of lymph node and cancer biopsy in 3 (long) weeks, well 2 and a half...
Night night off to try to sleep on the sofabed.
btw I did manage, finally, to poo for the 1st time since Wed and it was GREEEN! I know tmi, sorry.
Sunday 29 September 2013
Saturday 28 September 2013
The op
I came home from hospital this morning. I was dreading it as I felt so awful yesterday and today but I came home to a quiet house, calm and had a satisfying sleep on the sofa. The youngest is a bit crazy and it is stressful when he's around being active, but once he's settled it's ok. The big one is helping and is visibly relieved to have me home. The little one asked if I had to go back in hospital, I said no not for the moment and he said 'good so you're not going to die then'. First time he'd mentioned it all and otherwise he practically ignores me.
So Wed checked in at the last minute at the hospital. The surgeon drew all over my breasts and torso in his office and said 'see you later'. Indeed he did see a lot more of me later. All the pre op stuff was done, gown, hat, a painful plastic infusion thing was placed in my hand and I drank some bitter stuff to relax me. Wheeled down to the theatre and got stressed and upset so I calmed myself down I went to sleep with the image of all my friends and family standing around holding hands, all around the room. Yes you and you and you!
A whacking 5 and half hours later I was in the recovery room listening to the football getting told my dh was waiting for me. 2 hours later I went up and apparently I was a white as a sheet. I had lost a great deal of blood. Luckily the children were in good hands all day, esp as the op was way longer than expected. This was due to the surgeon having difficulty finding the sentinel node and him having a problem with having to take much more off my left (ill) breast and sewing it up and then having to take off the nipple and transplant it higher in the end because he cut off so much of the lower breast. My right nipple is very blue so I have to massage it to ensure it gets enough blood supply and doesn't go black and fall off. (bleergh).
The lovely lady in white who does night service woke me up regularly, checked blood pressure, pulse, gave me medicine, checked my drains (2 rather annoying plastic bottles of blood attached inside my wounds draining them, which stayed with me until a painful removal on Sat morning); I slept sitting up fitfully.
Thurs was my Birthday and it was a good day in that I was relieved to come out of the op and still on a bit of a high. L came by whilst I was in the operating theatre on Wed and left bottle of non alcoholic champagne and British cups and a medal which I saw when I came into the bedroom out of the operating theatre. I laughed! She came by again on Thurs and I think from this minute I will call her Saint L because she really is a lovie. She had made a cake with hearts on, smuggled it in, brought a candle which I had to blow out, with little cans of Orangina. She also blow dried my hair and took photos of me in my Tunisian Grandmother nightie. When she left she slipped dh a large bag with ironed sheets in it to put on my bed when I came home. Bliss!
dh passed briefly and was allowed to bring the kids and we blew out the candle and had some cake again and miss English Rose came by later and stayed to an illicit 21h. It was great to chat and receive the trashy mags and Maltesers, thanks!
Fri was a tough day. The bandage on my chest is so tight it is making it v difficult to eat and making me feel sick. I am nauseous too and very very dizzy. If I lay down I felt sick, if I sat up I felt dizzy; it was truly a horrible day and I can't remember when I last felt so thoroughly ill. I Also felt v down. The psychologist called me and got the full weight of my misery. I cried a lot. I am also devastated that my breasts had to be cut to such a small size. The surgeon took off Ikg off the left and 900g off the right. I've not really addressed this in my head yet, I've not seen them and tried not to look. I just want them to heal for the moment.
Sat followed in the same vein. I had some horrible weird dreams - in a pink taxi in Harrods with 4 guys looking for Christmas presents. I felt sick and dizzy and had to leave the hospital in a wheelchair. The one thing I really hated at the hospital was that it was so hot all the time, no escape. I felt much better once I smelled the fresh air.
I must leave you now, I am tired and my arms hurt from typing. Here's an update in case you were wondering. Thank you for the record number of texts and calls and mails that I received wishing me all the best.
So Wed checked in at the last minute at the hospital. The surgeon drew all over my breasts and torso in his office and said 'see you later'. Indeed he did see a lot more of me later. All the pre op stuff was done, gown, hat, a painful plastic infusion thing was placed in my hand and I drank some bitter stuff to relax me. Wheeled down to the theatre and got stressed and upset so I calmed myself down I went to sleep with the image of all my friends and family standing around holding hands, all around the room. Yes you and you and you!
A whacking 5 and half hours later I was in the recovery room listening to the football getting told my dh was waiting for me. 2 hours later I went up and apparently I was a white as a sheet. I had lost a great deal of blood. Luckily the children were in good hands all day, esp as the op was way longer than expected. This was due to the surgeon having difficulty finding the sentinel node and him having a problem with having to take much more off my left (ill) breast and sewing it up and then having to take off the nipple and transplant it higher in the end because he cut off so much of the lower breast. My right nipple is very blue so I have to massage it to ensure it gets enough blood supply and doesn't go black and fall off. (bleergh).
The lovely lady in white who does night service woke me up regularly, checked blood pressure, pulse, gave me medicine, checked my drains (2 rather annoying plastic bottles of blood attached inside my wounds draining them, which stayed with me until a painful removal on Sat morning); I slept sitting up fitfully.
Thurs was my Birthday and it was a good day in that I was relieved to come out of the op and still on a bit of a high. L came by whilst I was in the operating theatre on Wed and left bottle of non alcoholic champagne and British cups and a medal which I saw when I came into the bedroom out of the operating theatre. I laughed! She came by again on Thurs and I think from this minute I will call her Saint L because she really is a lovie. She had made a cake with hearts on, smuggled it in, brought a candle which I had to blow out, with little cans of Orangina. She also blow dried my hair and took photos of me in my Tunisian Grandmother nightie. When she left she slipped dh a large bag with ironed sheets in it to put on my bed when I came home. Bliss!
dh passed briefly and was allowed to bring the kids and we blew out the candle and had some cake again and miss English Rose came by later and stayed to an illicit 21h. It was great to chat and receive the trashy mags and Maltesers, thanks!
Fri was a tough day. The bandage on my chest is so tight it is making it v difficult to eat and making me feel sick. I am nauseous too and very very dizzy. If I lay down I felt sick, if I sat up I felt dizzy; it was truly a horrible day and I can't remember when I last felt so thoroughly ill. I Also felt v down. The psychologist called me and got the full weight of my misery. I cried a lot. I am also devastated that my breasts had to be cut to such a small size. The surgeon took off Ikg off the left and 900g off the right. I've not really addressed this in my head yet, I've not seen them and tried not to look. I just want them to heal for the moment.
Sat followed in the same vein. I had some horrible weird dreams - in a pink taxi in Harrods with 4 guys looking for Christmas presents. I felt sick and dizzy and had to leave the hospital in a wheelchair. The one thing I really hated at the hospital was that it was so hot all the time, no escape. I felt much better once I smelled the fresh air.
I must leave you now, I am tired and my arms hurt from typing. Here's an update in case you were wondering. Thank you for the record number of texts and calls and mails that I received wishing me all the best.
Tuesday 24 September 2013
On your marks, get set, go!
Today was the first day of my treatment. I had to have the scintigraphie pre operation procedure. It was hard to leave my house, it felt like I was really making my first step onto the possibly long road of treatment. Hard not to dive under the covers and stay home.
Miss Texas kindly delivered me the 10 or so km to the Centre de Médecine Nucléaire where I was immediately taken in hand and led to the treament room. After taking off my top, (yes back into that again), I had to lie on a platform. There were quite a few people in the room and in the control room next door so it was a bit busy but at least I wasn't standing around doing nothing. Actually I was a bit embarrassed as there was quite a cute young guy in the control room next door and I thought 'oh no, he's gonna see me' but once I was lying on the bed, nobody in the control room could see me which felt nicer.
Tears started coming out of my eyes and one of the assistants saw me and asked me if I was ok. I said I was stressed, he nicely reassured me and told the doctor I was stressed who, in turn, also reassured me. He told me he was going to put a needle in my breast right next to my nipple and, as the receptionist said, hardly hurt. The second needle did hurt more and it made me flinch quite hard. However, it was all over quite quickly and hup I was injected with radioactive material.
The weird part comes next - another guy then put gauze on the needle entry points and started to massage my breast. Errrrrrrrr??? Massage? Is this a spa I had come to by mistake? It needed to be done so that the material would move along the lymph nodes and reach the sentinel lymph node that they are going to remove tomorrow. They then left me for 5 minutes to massage my breasts myself. Another young guy (told you there were loads of them in the room) said the harder I massage, the quicker the material will move and the sooner I can go home. I looked at him in the eye and said, 'yeah but this is kinda weird isn't it, this massaging my breast?' He looked at me with a slight smile - he thought it was weird too!
After 5 mins they all came back and rolled my platform in a tube that took pictures like a scan I guess. Ah, no picture, more massaging needs doing. So there I was on my back rubbing my breast like a crazy woman for another 5 minutes whilst the party was going on in the control room next door. Weird.
And we had lift off. Back into the tube thing and the photos were taken, my lymph nodes came on the screen and a guy with a special pen came and marked on my skin where the lymph node is so tomorrrow the surgeon can quickly get to it without cutting me up too much. I believe they also inject some blue dye during the operation so the node is also dyed blue and very visible. Apparently they are very hard to get at.
After a short wait with a few really old peoople in the waiting room (always nice to be the youngest patient even in a nuclear medicine centre), the doctor called me, told me they'd managed to locate the correct node and wished me all the very best for the operation tomorrow.
All in all a pretty good experience for a test I was absolutely dreading. The receptionist kinda spoilt it by saying 'see it's nothing isn't it? Nothing compared to tomorrow anyway'. Miss Texas was almsot ready to dive across the counter and throttle her however a hard look from her sufficed to stop the silly girl's platitudes. She could see that I was feeling tired and that it had been hard nonetheless.
A little stop to find open at the front pjs in Monoprix (ended up with a long nightie which makes me look like a Tunisian grandmother) and home it was.
Thanks to MT who has had all the bum gigs so far in this nightmare and has withstood them like a true friend.
Overwhelmed by all the calls and texts today and tonight wishing me all the best. Sad to hear my Mum cry when she said I love you and speak to you tomorrow. Yeah, I cried too Mum.
à demain.
Miss Texas kindly delivered me the 10 or so km to the Centre de Médecine Nucléaire where I was immediately taken in hand and led to the treament room. After taking off my top, (yes back into that again), I had to lie on a platform. There were quite a few people in the room and in the control room next door so it was a bit busy but at least I wasn't standing around doing nothing. Actually I was a bit embarrassed as there was quite a cute young guy in the control room next door and I thought 'oh no, he's gonna see me' but once I was lying on the bed, nobody in the control room could see me which felt nicer.
Tears started coming out of my eyes and one of the assistants saw me and asked me if I was ok. I said I was stressed, he nicely reassured me and told the doctor I was stressed who, in turn, also reassured me. He told me he was going to put a needle in my breast right next to my nipple and, as the receptionist said, hardly hurt. The second needle did hurt more and it made me flinch quite hard. However, it was all over quite quickly and hup I was injected with radioactive material.
The weird part comes next - another guy then put gauze on the needle entry points and started to massage my breast. Errrrrrrrr??? Massage? Is this a spa I had come to by mistake? It needed to be done so that the material would move along the lymph nodes and reach the sentinel lymph node that they are going to remove tomorrow. They then left me for 5 minutes to massage my breasts myself. Another young guy (told you there were loads of them in the room) said the harder I massage, the quicker the material will move and the sooner I can go home. I looked at him in the eye and said, 'yeah but this is kinda weird isn't it, this massaging my breast?' He looked at me with a slight smile - he thought it was weird too!
After 5 mins they all came back and rolled my platform in a tube that took pictures like a scan I guess. Ah, no picture, more massaging needs doing. So there I was on my back rubbing my breast like a crazy woman for another 5 minutes whilst the party was going on in the control room next door. Weird.
And we had lift off. Back into the tube thing and the photos were taken, my lymph nodes came on the screen and a guy with a special pen came and marked on my skin where the lymph node is so tomorrrow the surgeon can quickly get to it without cutting me up too much. I believe they also inject some blue dye during the operation so the node is also dyed blue and very visible. Apparently they are very hard to get at.
After a short wait with a few really old peoople in the waiting room (always nice to be the youngest patient even in a nuclear medicine centre), the doctor called me, told me they'd managed to locate the correct node and wished me all the very best for the operation tomorrow.
All in all a pretty good experience for a test I was absolutely dreading. The receptionist kinda spoilt it by saying 'see it's nothing isn't it? Nothing compared to tomorrow anyway'. Miss Texas was almsot ready to dive across the counter and throttle her however a hard look from her sufficed to stop the silly girl's platitudes. She could see that I was feeling tired and that it had been hard nonetheless.
A little stop to find open at the front pjs in Monoprix (ended up with a long nightie which makes me look like a Tunisian grandmother) and home it was.
Thanks to MT who has had all the bum gigs so far in this nightmare and has withstood them like a true friend.
Overwhelmed by all the calls and texts today and tonight wishing me all the best. Sad to hear my Mum cry when she said I love you and speak to you tomorrow. Yeah, I cried too Mum.
à demain.
Monday 23 September 2013
Wrapped in love
I was alone today, for the first time for ages. I was expecting to work today but my replacement for the rest of the week also did today instead of me, so I was at a loose end. dh worried about me, he asked me several times if I wanted him to stay at home. He's already missing enough work this week, so I insisted he went.
Well, not really a loose end. I had papers to fill in, health forms to send off, admin. I called the place where I'll be doing the weird radioactive test tomorrow and told them I have a phobia about needles. (I don't really have a phobia but I am v scared of them so maybe I do in fact?) I asked them to explain the test to me as I was worried about it. The secretary was in fact very nice. She explained what they do and that the needle they'll put in my breast is very fine, so fine in fact that some women don't even feel it going in. That I do NOT believe, however she said that it would be just like a pinprick, so maybe it'll be ok? It reassured me a bit anyway. Apparently then they put you on a machine that monitors whether the liquid has reached the lymph nodes and then they mark them on my skin with a cross. X marks the spot.
Miss Texas is kindly taking me and we'll be stocking up with bad magazines as sometimes one has to wait quite a while before the liquid gets around to the right place, several hours in fact. Let's hope my lymph glands are working well tomorrow and more to the point, let's hope they don't find cancer in them.
I did have a big gulping cry today, however, when the postman delivered a parcel from UK. It was this beautifully made, soft, fleecy, ribbon edged blanket - bed sized, it's folded in the picture. What made me cry was the lovely embroidered message. These are all my friends from school who sent it. They are all far away in UK - we meet up whenever we can a few times a year - but they will be with me keeping me warm in hospital, wrapping me in love, literally. What a thoughtful, touching, kind present to organise. Aren't I so lucky? Thank you so much. Oh god I think I'm going to cry again!
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Well, not really a loose end. I had papers to fill in, health forms to send off, admin. I called the place where I'll be doing the weird radioactive test tomorrow and told them I have a phobia about needles. (I don't really have a phobia but I am v scared of them so maybe I do in fact?) I asked them to explain the test to me as I was worried about it. The secretary was in fact very nice. She explained what they do and that the needle they'll put in my breast is very fine, so fine in fact that some women don't even feel it going in. That I do NOT believe, however she said that it would be just like a pinprick, so maybe it'll be ok? It reassured me a bit anyway. Apparently then they put you on a machine that monitors whether the liquid has reached the lymph nodes and then they mark them on my skin with a cross. X marks the spot.
Miss Texas is kindly taking me and we'll be stocking up with bad magazines as sometimes one has to wait quite a while before the liquid gets around to the right place, several hours in fact. Let's hope my lymph glands are working well tomorrow and more to the point, let's hope they don't find cancer in them.
I did have a big gulping cry today, however, when the postman delivered a parcel from UK. It was this beautifully made, soft, fleecy, ribbon edged blanket - bed sized, it's folded in the picture. What made me cry was the lovely embroidered message. These are all my friends from school who sent it. They are all far away in UK - we meet up whenever we can a few times a year - but they will be with me keeping me warm in hospital, wrapping me in love, literally. What a thoughtful, touching, kind present to organise. Aren't I so lucky? Thank you so much. Oh god I think I'm going to cry again!
Dinner time!
J came round and delivered a delicious home cooked meal tonight - cous cous, green beans and juicy lemon chicken. I've spent all day doing as much ironing and clothes washing as humanely possible today and this weekend. The drawers of my boys are filled to the brim with socks and pants and T shirts. Enough for 2 weeks, which is good. So a meal I didn't have to prepare was so very very welcome and did I mention that it was absolutely delicious? Thank you so much J.
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small bras
I plucked up the courage to look at some C cup bras yesterday with my friend, who has B sized cups. Another friend was happy to show her C cups to me last week! The surgeon thinks I will have a C cup after the operation.
Relatively speaking (without wanting to upset anyone) I found the C cup next to my FF cup extremely small. They are going to look really bizzare on my chest. I honestly don't know how Il'l be able to look at them. I know everyone keeps saying 'oh it will be hard, you have to be brave and then it will be ok'. Not sure, not convinced of a) whether I will be so brave and b) whether it will be ok afterwards.
The bras were pretty, it's true, but they are so tiny, I know you C cuppers, you've had lots of time to get used to them, all your life in fact, and they are probably in proportion to your body but FF to C. Big bad leap:-(
Relatively speaking (without wanting to upset anyone) I found the C cup next to my FF cup extremely small. They are going to look really bizzare on my chest. I honestly don't know how Il'l be able to look at them. I know everyone keeps saying 'oh it will be hard, you have to be brave and then it will be ok'. Not sure, not convinced of a) whether I will be so brave and b) whether it will be ok afterwards.
The bras were pretty, it's true, but they are so tiny, I know you C cuppers, you've had lots of time to get used to them, all your life in fact, and they are probably in proportion to your body but FF to C. Big bad leap:-(
Friday 20 September 2013
Work II
I have spent a really great week working with some very inspiring and funny colleagues and some very talented and diverse students. It was just the best to do something so rewarding and interesting. Every day is different and fun. I am so glad to have managed this. Pretty tired now....
sweet text
My lovely English rose friend sent me a text
"You're a gorgeous person inside and out and we will love you through thick and thin"
That's so lovely and important to know - it's truly great to receive so much love from my friends, but I think the thing is I don't think I'm going to love myself, that's the tricky one.
Thank you v much to everyone who has responded to my recent distress.
Things are getting too close and scary.........
"You're a gorgeous person inside and out and we will love you through thick and thin"
That's so lovely and important to know - it's truly great to receive so much love from my friends, but I think the thing is I don't think I'm going to love myself, that's the tricky one.
Thank you v much to everyone who has responded to my recent distress.
Things are getting too close and scary.........
Thursday 19 September 2013
Something to remember
For most women with stage I or II breast cancer, breast-conserving
surgery (BCS) plus radiation therapy is as effective as mastectomy.
Survival rates of women treated with these 2 approaches are the same.
In deciding which type of surgery to have for early-stage breast cancer, the choice is not between saving your breast and saving your life. Women with early-stage breast cancer who have breast-sparing surgery live just as long as those who have mastectomy. A woman’s life expectancy is the same no matter which surgical choice she makes.
When women are told that the survival rates of both approaches are the same, they might be surprised or skeptical. Some women assume that breast cancer won't return if the whole breast is removed. However, some breast tissue is left behind even after mastectomy, and cancer can recur in that tissue or on the nearby chest wall. For women with early-stage breast cancer who choose breast-sparing surgery, research clearly shows that radiation therapy after surgery lowers the risk of recurrence. The risk of cancer returning in the same breast is low. Yet, even if breast cancer does recur in the same breast, that does not reduce a woman's chances for a healthy recovery. As was already noted, the chance of survival is not affected by the choice of surgery. However, a recurrence in the same breast could require more surgery, and a woman may decide to have a mastectomy at that time.
The type of surgery does not affect the risk of cancer in the healthy breast or elsewhere in the body.
womenshealth.gov
In deciding which type of surgery to have for early-stage breast cancer, the choice is not between saving your breast and saving your life. Women with early-stage breast cancer who have breast-sparing surgery live just as long as those who have mastectomy. A woman’s life expectancy is the same no matter which surgical choice she makes.
When women are told that the survival rates of both approaches are the same, they might be surprised or skeptical. Some women assume that breast cancer won't return if the whole breast is removed. However, some breast tissue is left behind even after mastectomy, and cancer can recur in that tissue or on the nearby chest wall. For women with early-stage breast cancer who choose breast-sparing surgery, research clearly shows that radiation therapy after surgery lowers the risk of recurrence. The risk of cancer returning in the same breast is low. Yet, even if breast cancer does recur in the same breast, that does not reduce a woman's chances for a healthy recovery. As was already noted, the chance of survival is not affected by the choice of surgery. However, a recurrence in the same breast could require more surgery, and a woman may decide to have a mastectomy at that time.
The type of surgery does not affect the risk of cancer in the healthy breast or elsewhere in the body.
womenshealth.gov
Difference in opinions
Dropped the chidren at sport and unfortunately got talking to another Mum who knows about my cancer because her daugher told her I was going to hospital for an operation (she'd heard it at school as she kicks around with my son's friends). The Mum confronted dh with this and he told her the truth.
Now this wouldn't normally be the person I'd confide inso I was uncomfortable when I saw her and she started asking me more questions about the treatment. My nature is to be honest but this time I wish I hadn't been. She started going on about how I should have chosen a mastectomy, what happens if they leave some cancer in and it starts growing everywhere and does more damage than before and how I should think of my children and how much I have to live for and how I should have taken another decision.
In the end I stopped her and said 'I wish I hadn't spoken to you, you're making me feel bad' and the reply 'oh no I don't mean to, we are all with you, you are strong, if we can do anything for you blah blah blah'.
This is why my reaction is not to want to tell everyone just those people that, even if they don't agree, they would support and understand my choice. dh told me tonight that, even though it was scary, it was the right choice for me.
I am seriously wavering now the operation is in one week exactly. This encounter did me no good whatsoever.
I had an appointment with the psychologist this evening, had to take the children so the Listening Blonde chatted to them for a bit. She gave Loic some chocolate biscuits. He had a moment when he looked really really sad. I asked him if he was ok thinking he wanted to say something, he said 'I don't like dark chocolate can I give these biscuits to Théo'. His brother though, did take the opportunity to express his concerns about the surgery and that something might go wrong so, although I'd already tried to reassure him, it was good that the LB did too and explained things a bit to him.
We then had a session together alone where we talked about the operation. I'm feeling very scared and it's like all this is happening to someone else and not me, I can't believe it will be me lying on that operating table next week. This doesn't happen to me. LB gave me an idea of what would happen, that I'd have a huge bandage around my breasts at first which would be taken off before I left the hospital. She advised me to use the painkillers regularly rather than waiting for the last minute (which is what I would do as I hardly even take aspirin, never liked medication) as it's harder to get rid of a big pain and the body tends to start to freeze up and it gets to a vicious circle. She also asked me how I was feeling about the change in size of my breasts as they would be much smaller. I had thought a bit but it struck home today that this was something that was actually going to happen. I would never ever be the same again. I had been trying to think positively and have seen smaller bras in shops thinking that it would be nice to have the chance to buy a bra like lots of other people other than having to buy them in Uk each time as the size is so big, but I haven't managed to convince myself. I feel like I am losing myself. I know everyone tries to put a positive spin on it - oh get the catalogue out, you'll feel like a younger woman, your personality is what counts etc but the truth is that my breasts are truly the only good thing, for me, about my body. They put everything into proportion and they are damm sexy and voluptuous. And they will be gone forever.
I feel like this change will be like a 'vide' in my life and my clothes and on my body. I have all my clothes for large breasts and they will just feel empty. What do I do, throw away all my clothes? As LB explained it would change my view of my femininity and sexuality. Already I don't really feel v feminine or sexy so god know what this will do. I notice that I've already started hugging my cardigan around me and crossing my arms across my chest a lot recently, as if trying to protect myself or my breasts I guess.
LB asked me had I thought about the moment I would see the changed breasts. She advised me that the nurse would propose looking at them in the mirror and she said that it would be better to do it then with someone rather than by myself at home. Personally I do not want to see these new things all bloody, scarred and small on my big chest. I can't imagine wanting to look at them ever again and feeling sexy again. I know people say sexy comes from within, but certain things about a woman's body help to give you that confidence and they are taking that away. This bastard disease has taken them away. And even this operation might not be enough.
I cried a lot tonight. dh keeps telling me it's only appearance. Yes well, that's a lot frankly.
I hate that I have cancer. I am so angry to have it. I does matter that my tits are going away and I KNOW there are people who have a much much worse deal than me, but we have to deal with what we are given. I DO feel lucky for the blessings I have but I wish this bastard thing had never come into my life and in the life of my friends and family. It's not fair, it's not fair. I wish it would fuck off.
If someone gave me an airline ticket for somewhere far, I would go and leave everything behind right now. I want to just leave my life with my black cancer cloud over my head behind and go and die somewhere warm where nobody knows me.
Now this wouldn't normally be the person I'd confide inso I was uncomfortable when I saw her and she started asking me more questions about the treatment. My nature is to be honest but this time I wish I hadn't been. She started going on about how I should have chosen a mastectomy, what happens if they leave some cancer in and it starts growing everywhere and does more damage than before and how I should think of my children and how much I have to live for and how I should have taken another decision.
In the end I stopped her and said 'I wish I hadn't spoken to you, you're making me feel bad' and the reply 'oh no I don't mean to, we are all with you, you are strong, if we can do anything for you blah blah blah'.
This is why my reaction is not to want to tell everyone just those people that, even if they don't agree, they would support and understand my choice. dh told me tonight that, even though it was scary, it was the right choice for me.
I am seriously wavering now the operation is in one week exactly. This encounter did me no good whatsoever.
I had an appointment with the psychologist this evening, had to take the children so the Listening Blonde chatted to them for a bit. She gave Loic some chocolate biscuits. He had a moment when he looked really really sad. I asked him if he was ok thinking he wanted to say something, he said 'I don't like dark chocolate can I give these biscuits to Théo'. His brother though, did take the opportunity to express his concerns about the surgery and that something might go wrong so, although I'd already tried to reassure him, it was good that the LB did too and explained things a bit to him.
We then had a session together alone where we talked about the operation. I'm feeling very scared and it's like all this is happening to someone else and not me, I can't believe it will be me lying on that operating table next week. This doesn't happen to me. LB gave me an idea of what would happen, that I'd have a huge bandage around my breasts at first which would be taken off before I left the hospital. She advised me to use the painkillers regularly rather than waiting for the last minute (which is what I would do as I hardly even take aspirin, never liked medication) as it's harder to get rid of a big pain and the body tends to start to freeze up and it gets to a vicious circle. She also asked me how I was feeling about the change in size of my breasts as they would be much smaller. I had thought a bit but it struck home today that this was something that was actually going to happen. I would never ever be the same again. I had been trying to think positively and have seen smaller bras in shops thinking that it would be nice to have the chance to buy a bra like lots of other people other than having to buy them in Uk each time as the size is so big, but I haven't managed to convince myself. I feel like I am losing myself. I know everyone tries to put a positive spin on it - oh get the catalogue out, you'll feel like a younger woman, your personality is what counts etc but the truth is that my breasts are truly the only good thing, for me, about my body. They put everything into proportion and they are damm sexy and voluptuous. And they will be gone forever.
I feel like this change will be like a 'vide' in my life and my clothes and on my body. I have all my clothes for large breasts and they will just feel empty. What do I do, throw away all my clothes? As LB explained it would change my view of my femininity and sexuality. Already I don't really feel v feminine or sexy so god know what this will do. I notice that I've already started hugging my cardigan around me and crossing my arms across my chest a lot recently, as if trying to protect myself or my breasts I guess.
LB asked me had I thought about the moment I would see the changed breasts. She advised me that the nurse would propose looking at them in the mirror and she said that it would be better to do it then with someone rather than by myself at home. Personally I do not want to see these new things all bloody, scarred and small on my big chest. I can't imagine wanting to look at them ever again and feeling sexy again. I know people say sexy comes from within, but certain things about a woman's body help to give you that confidence and they are taking that away. This bastard disease has taken them away. And even this operation might not be enough.
I cried a lot tonight. dh keeps telling me it's only appearance. Yes well, that's a lot frankly.
I hate that I have cancer. I am so angry to have it. I does matter that my tits are going away and I KNOW there are people who have a much much worse deal than me, but we have to deal with what we are given. I DO feel lucky for the blessings I have but I wish this bastard thing had never come into my life and in the life of my friends and family. It's not fair, it's not fair. I wish it would fuck off.
If someone gave me an airline ticket for somewhere far, I would go and leave everything behind right now. I want to just leave my life with my black cancer cloud over my head behind and go and die somewhere warm where nobody knows me.
Monday 16 September 2013
Work
I worked today, teaching all day. It was just great to forget cancer for a few hours. JUST GREAT! I felt useful and positive.
Sunday 15 September 2013
Tired
I am so tired these days, just yawning all the time, my head feels tired, my body aches and feels heavy and tired, I don't sleep well most nights though, sometimes even with a pill, like my mind keeps me awake but my body is saying sleep. The psychologist said this was probably psychological too - many people experience this after a diagnosis. At least it's normal.
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Saturday 14 September 2013
and the love keeps on coming
Just to show you how wonderful everyone is being - today is a typical day, even though most people are busy with their families on Saturdays I received
- an email offering support for dh
- a supportive email
- 5 FB messages of support
- a text asking me if I wanted something from WH Smith and the promise of the new Jeffrey Archer novel (yes my choice!)
- emails organising a dinner with friends before admission to hospital
- text asking what childcare I needed whilst in hospital
- text offering to help me find a special pillow to help me sleep
- an email showing a friend's breast reduction before and after photos and those of her friend's (for my eyes only!
- an email from someone who I have never met showing me support with a scan of a booklet regarding how to tell children about cancer and one for the caregiver
How good is that?
thaaaaaaaaaanks!
- an email offering support for dh
- a supportive email
- 5 FB messages of support
- a text asking me if I wanted something from WH Smith and the promise of the new Jeffrey Archer novel (yes my choice!)
- emails organising a dinner with friends before admission to hospital
- text asking what childcare I needed whilst in hospital
- text offering to help me find a special pillow to help me sleep
- an email showing a friend's breast reduction before and after photos and those of her friend's (for my eyes only!
- an email from someone who I have never met showing me support with a scan of a booklet regarding how to tell children about cancer and one for the caregiver
How good is that?
thaaaaaaaaaanks!
Friday 13 September 2013
Calm
Pretty calm day today. I got some problems with the unemployment office sorted out (although it will be 3 months before I get any unemployment payments) and my new health card (carte vitale) actually arrived (6 months after having it stolen). This one is 100% so I don't have to pay out for appointments and wait to be reimbursed. This will make a difference to me.
I had a meeting with the psychologist that Dr Pink had reccomended, let's call her the Listening Blonde. She's based in a normal house which is a 10 min bus ride from us. It's a sort of Cancer Centre. There's meeting rooms, places to do yoga and meditation, a kitchen and offices, a childrens' room with loads of toys and books, lots of adult books and information leaflets. I spent around an hour with the psychlogist who is specialised in cancer issues.
I had a chance to speak about my feelings. I felt like I spoke a lot and she didn't, but thinking about the session she actually gave me a lot of information and reassurance and she asked me some very pointed questions which helped me understand why and explained some things I was doing and feeling. She validated my feelings - the ups the downs of this time - following a diagnosis and before the treatment begins, so I felt normal and not like a whingey crazy woman and she helped me separate some issues out. I said I feel like I'm going to run a marathon and like I've already done 10km but in fact I'm still on the starting line.
I got a chance to talk about what I wanted to and I asked her how to handle this cancer business and the children and LB had some good suggestions.
We made an appointment for next week. I feel like this is the place to ask questions about the emotional aspect of it all, it's good to have that place. We can also do the psychology with the family or the children, which might be a good idea once or twice so everyone gets a chance to express themselves.
I was then introducted to a group of patients who were there for a workshop. I was a bit disappointed to see that they all seemed to be quite a bit older than me. They were all friendly though. I found it hard to tear my eyes away from one lady wearing a pretty hat. The LB said that everyone who came had something to learn from the others and went on their journey together. I'm sceptical that I'll fit in, but maybe if I go to some of the workshops this will come naturally. There are workshops for yoga, meditation, pottery, drawing, written expression, sophrologie etc. I'll do some of them when I'm feeling better after the op.
And dear reader, this is all free of charge.
I had a meeting with the psychologist that Dr Pink had reccomended, let's call her the Listening Blonde. She's based in a normal house which is a 10 min bus ride from us. It's a sort of Cancer Centre. There's meeting rooms, places to do yoga and meditation, a kitchen and offices, a childrens' room with loads of toys and books, lots of adult books and information leaflets. I spent around an hour with the psychlogist who is specialised in cancer issues.
I had a chance to speak about my feelings. I felt like I spoke a lot and she didn't, but thinking about the session she actually gave me a lot of information and reassurance and she asked me some very pointed questions which helped me understand why and explained some things I was doing and feeling. She validated my feelings - the ups the downs of this time - following a diagnosis and before the treatment begins, so I felt normal and not like a whingey crazy woman and she helped me separate some issues out. I said I feel like I'm going to run a marathon and like I've already done 10km but in fact I'm still on the starting line.
I got a chance to talk about what I wanted to and I asked her how to handle this cancer business and the children and LB had some good suggestions.
We made an appointment for next week. I feel like this is the place to ask questions about the emotional aspect of it all, it's good to have that place. We can also do the psychology with the family or the children, which might be a good idea once or twice so everyone gets a chance to express themselves.
I was then introducted to a group of patients who were there for a workshop. I was a bit disappointed to see that they all seemed to be quite a bit older than me. They were all friendly though. I found it hard to tear my eyes away from one lady wearing a pretty hat. The LB said that everyone who came had something to learn from the others and went on their journey together. I'm sceptical that I'll fit in, but maybe if I go to some of the workshops this will come naturally. There are workshops for yoga, meditation, pottery, drawing, written expression, sophrologie etc. I'll do some of them when I'm feeling better after the op.
And dear reader, this is all free of charge.
Date
After chasing the secretary (no change there), she finally called me back yesterday, Thursday, with the date of 25th September for the operation (the day before my Birthday). She told me to come in on Monday for a mtg with Dr F and the anethesia guy. I wasn't available so finally she said ok come in today at 16h. So, childcare was arranged hastily and dh came home early to take me there.
We saw Dr F who asked to take photos of me - I said 'well I suppose it's not my face you're going to photograph is it?' No, get your top off. It's a long time since someone took photos of me bare breasted! I still feel very very uncomfortable and embarrassed when dh is in the room and he watches me get my top off for these Dr blokes and he sees them feeling my breasts. I don't really want him to watch. He doesn't understand why. I hate it.
I had the chance to ask some questions and whilst I was with Z this morning, I had a 'bling' moment - if he does the reduction and there is still some cancer then I will have, at least, the reduced-size breasts so if he has to take all the left breast, then he won't be obliged to wait 6 months to do a reconstruction because he'll be reconstructing a breast to match the smaller right one, so hopefully he'll be able to do an implant on the operating table at the same time instead of the fat injections months later. He said 'that'll be me who decides but yes it's possible, probably'. So this is great news, possibly, probably.
He's pretty kind too because he's prepared to reduce his fees if we don't get reimbursed by our health insurance for the excess above the social security reimbursement level, so that we aren't out of pocket. And that is very welcome right now!
Then to the secretary who defied all secretarial expectations and was actually adorable, asking about the kids, explaining things, laughing, joking, kind. Wow! I had to write several cheques, one of which was for a special bra which I have to wear for 3 months afterwards apparently. Least I'll get my moneysworth. I'll have to take it off to wash it though, won't I???
She'd also arranged for me to see the anaesthesist who was in the facing office. He was funny, sympathetic (so what brings you here my beautiful? Cancer, oh that's hard for you') and kind. He spoke some English and his voice which was strong and normal in French became really small and squeaky in English. I thought he was taking the mickey at first but that was his 'English' voice! Anyway we finished talking about Bayern Munich and Manchester United and that was the appointment done! I just hope he looks after me right.
Then a big blood test, 7 test tubes. The guy was pretty cool. I warned him that I had trouble (fainting, hot flushes, nausea, small veins etc) this time, as the Macmillan Nurse who I spoke to on the phone suggested. And he did it like a king - I have a tiny bruise and it really did not hurt and was not unpleasant apart from a few hot flushes. I thanked him very much.
Then the admissions procedure where I booked my single room for 2 nights. I've decided to go in on the day of the op instead of spending the night in the hospital. Why be away from your family longer than necessary?
I was glad to escape after a couple of hours and see the kids again. And go out for a meal with the Scottish bird and the English rose. Thank you girls for the yummy meal, organic wine (a nod to eating organic) and the gifts and most of all, your company and your support.
It was quite a day today, I felt really down right from the moment I woke up and my head felt like it was everywhere and nowhere so it was good to see Z and the girls.
We saw Dr F who asked to take photos of me - I said 'well I suppose it's not my face you're going to photograph is it?' No, get your top off. It's a long time since someone took photos of me bare breasted! I still feel very very uncomfortable and embarrassed when dh is in the room and he watches me get my top off for these Dr blokes and he sees them feeling my breasts. I don't really want him to watch. He doesn't understand why. I hate it.
I had the chance to ask some questions and whilst I was with Z this morning, I had a 'bling' moment - if he does the reduction and there is still some cancer then I will have, at least, the reduced-size breasts so if he has to take all the left breast, then he won't be obliged to wait 6 months to do a reconstruction because he'll be reconstructing a breast to match the smaller right one, so hopefully he'll be able to do an implant on the operating table at the same time instead of the fat injections months later. He said 'that'll be me who decides but yes it's possible, probably'. So this is great news, possibly, probably.
He's pretty kind too because he's prepared to reduce his fees if we don't get reimbursed by our health insurance for the excess above the social security reimbursement level, so that we aren't out of pocket. And that is very welcome right now!
Then to the secretary who defied all secretarial expectations and was actually adorable, asking about the kids, explaining things, laughing, joking, kind. Wow! I had to write several cheques, one of which was for a special bra which I have to wear for 3 months afterwards apparently. Least I'll get my moneysworth. I'll have to take it off to wash it though, won't I???
She'd also arranged for me to see the anaesthesist who was in the facing office. He was funny, sympathetic (so what brings you here my beautiful? Cancer, oh that's hard for you') and kind. He spoke some English and his voice which was strong and normal in French became really small and squeaky in English. I thought he was taking the mickey at first but that was his 'English' voice! Anyway we finished talking about Bayern Munich and Manchester United and that was the appointment done! I just hope he looks after me right.
Then a big blood test, 7 test tubes. The guy was pretty cool. I warned him that I had trouble (fainting, hot flushes, nausea, small veins etc) this time, as the Macmillan Nurse who I spoke to on the phone suggested. And he did it like a king - I have a tiny bruise and it really did not hurt and was not unpleasant apart from a few hot flushes. I thanked him very much.
Then the admissions procedure where I booked my single room for 2 nights. I've decided to go in on the day of the op instead of spending the night in the hospital. Why be away from your family longer than necessary?
I was glad to escape after a couple of hours and see the kids again. And go out for a meal with the Scottish bird and the English rose. Thank you girls for the yummy meal, organic wine (a nod to eating organic) and the gifts and most of all, your company and your support.
It was quite a day today, I felt really down right from the moment I woke up and my head felt like it was everywhere and nowhere so it was good to see Z and the girls.
Decision
I know not everyone agrees with this but I've chosen to go for Option 1 because
- having found out I have cancer is enough pain to bear let alone losing one breast and waiting a year for the full reconstruction. I cannot do it even though it is 'only' a year out of my life, I feel it would mark me very badly psychologically.
- I feel I should give the first option a chance because if it works then that would be absolutely great.
- It would be nice to have a lifted, same-size pair of breasts, cancer free, for the future.
- I keep my nipples
- I would be ok if there is radiation treatment that follows although it's not going to be a laugh
Things I'm worried about
- it doesn't work, the margins are not clear - it will be very stressful waiting for a new set of results especially when I'm recuperating
- it prolongs the length of treatment as the next op cannot be earlier than 3 months later bringing us to Christmas already
- the op will go wrong
- it will take ages to get better and there will be complications
And there's always the lymph nodes to complicate matters of course
And it's still shit that I have to do this flippin operation anyway, by the way.
- having found out I have cancer is enough pain to bear let alone losing one breast and waiting a year for the full reconstruction. I cannot do it even though it is 'only' a year out of my life, I feel it would mark me very badly psychologically.
- I feel I should give the first option a chance because if it works then that would be absolutely great.
- It would be nice to have a lifted, same-size pair of breasts, cancer free, for the future.
- I keep my nipples
- I would be ok if there is radiation treatment that follows although it's not going to be a laugh
Things I'm worried about
- it doesn't work, the margins are not clear - it will be very stressful waiting for a new set of results especially when I'm recuperating
- it prolongs the length of treatment as the next op cannot be earlier than 3 months later bringing us to Christmas already
- the op will go wrong
- it will take ages to get better and there will be complications
And there's always the lymph nodes to complicate matters of course
And it's still shit that I have to do this flippin operation anyway, by the way.
Tuesday 10 September 2013
Good news
Dr F (or shall I call him Dr nose?) DID say some excellent things last night though, and I'm writing them down because I want to remember them when it might be a bit bleak.
1. it's good that I found the cancer and acted on it.
2. it's good that I have large breasts.
3. It's very unlikely that I will have to go through chemo in my road to recovery (nothing is sure but I like 'very unlikely' very much).
4. it's good that the cancer was caught so early.
He was pretty nice and straightforward.
I did ask him the same question as Patrice 'if it was your wife, what would you do?) He said he'd do the second choice but that he is not his wife so he can't decide for her.
dh's view is that I should do the first option because he knows me well and he knows that psychologically it would be 7 kinds of hell for me to go through the second and that I would be a bitch to him and the kids for the next year.
What he doesn't know is that mabye if doubts install, I'd be a bitch anyway.
Or maybe I won't be a bitch at all ('you kiddin me?' dh)
1. it's good that I found the cancer and acted on it.
2. it's good that I have large breasts.
3. It's very unlikely that I will have to go through chemo in my road to recovery (nothing is sure but I like 'very unlikely' very much).
4. it's good that the cancer was caught so early.
He was pretty nice and straightforward.
I did ask him the same question as Patrice 'if it was your wife, what would you do?) He said he'd do the second choice but that he is not his wife so he can't decide for her.
dh's view is that I should do the first option because he knows me well and he knows that psychologically it would be 7 kinds of hell for me to go through the second and that I would be a bitch to him and the kids for the next year.
What he doesn't know is that mabye if doubts install, I'd be a bitch anyway.
Or maybe I won't be a bitch at all ('you kiddin me?' dh)
The choice for a lifetime?
Much cogitation over the we. L was with me all day yesterday and I decided to try to see Patrice the oncologe to find out more behind the decision that was taken at the Commission. Immediately I was corrected I said the Commission had 'decidé', he said no they have 'proposé', it's me who decides which way to go. Ah. Dr Pink, didn't say that although he did say I could refuse.
Patrice told me lots of things but not very much I felt. It is all such a slippery subject. We looked at the mammos again and I saw the calcifications going everywhere, we saw the mass and it's location. He seemed to be indicating that the quadrant operation (scheduled for today) was still possible as well as a masectomy and it was also clear that they would not impose the option on me, it would be my choice. I asked him what he'd do if his wife had the choice. He didn't answer but said 'my wife's breasts aren't as big as yours'! I said oh, shame for you! I left feeling confused a bit but possibly more towards the masectomy, strangely. L thought I'd be more towards the quadrant. What I did come away with is that there is a risk for everything, even a masectomy where the cancer can develop in the chest cavity. It was clear that tonight would decide everything.
My first thought when seeing Dr F, the plastic surgeon was why on earth, given his skills and the mates he must have, he had not had an operation on his own nose, but that's by the by really issn't it?
After looking at the results, asking mundane questions etc, his first question was 'do you like to play at Poker?' Oh christ, a surgeon with a sense of humour. Why? Because he was going to give me 2 options and one of those was less sure than the other.
He drew on my breasts with his marker and explained the first option: a breast reduction for both breasts which included taking out the tumor and the calcifications - like the quadrant but with a nicer looking result instead of me looking like a shark had bit me.
Option 1 Bad points:
- There would be a risk that they don't take out all the bad stuff.
- If there was still cancer I would have to have a masectomy for the left breast, nothing else would be proposed. We would know around 3 months afterwards although cancer can develop later too, however I would be monitored closely.
- Breasts would be significantly smaller
- may have to do radiation afterwards
Option 1 Good points:
I would have nicer looking breasts and they would be pretty perky and possibly all the cancer would be gone. I would keep both nipples.
Option 2
Masectomy of left breast with reconstruction using fat injections from my own body with breast reduction of right breast to match left.
Option 2 Bad points:
Lose my breast, and eventually both breasts would be smaller
Option 2 Good points:
More chance of getting all the cancer but nothing is sure as Patrice said
Dr Pink had told me that they would do an immediate reconstruction using my body skin and fat. Ah but no dear reader, told you, they don't always tell the truth. This nugget was for me the only saving grace for the masectomy, I would go under with 2 and wake up with 2 breasts. This sweetener was put back into the sweetie jar last night.
Option 2 very bad point: The reconstruction would be done with injections of my own fat (and he noted I had plenty of adipose to spare). However, the reconstruction would be done 6 months later to allow the skin to go stronger and mend after the op. And the reconstruction would be over 4 appointments over 6 months. So in one year I would have both breasts the same size (but smaller) and no nipple on the left (although they can tattoo and do stuff for that).
So I would spend 6 months with one very large breast and nothing on the other side except a false one in a bra.
Both operations will be 4 weeks recovery and 2 - 3 days in hospital.
Both operations would involve taking out a sentinel lymph node to see if the cancer has spread and this of course is another story.
It is entirely my choice between option 1 & 2
What would you choose?
Patrice told me lots of things but not very much I felt. It is all such a slippery subject. We looked at the mammos again and I saw the calcifications going everywhere, we saw the mass and it's location. He seemed to be indicating that the quadrant operation (scheduled for today) was still possible as well as a masectomy and it was also clear that they would not impose the option on me, it would be my choice. I asked him what he'd do if his wife had the choice. He didn't answer but said 'my wife's breasts aren't as big as yours'! I said oh, shame for you! I left feeling confused a bit but possibly more towards the masectomy, strangely. L thought I'd be more towards the quadrant. What I did come away with is that there is a risk for everything, even a masectomy where the cancer can develop in the chest cavity. It was clear that tonight would decide everything.
My first thought when seeing Dr F, the plastic surgeon was why on earth, given his skills and the mates he must have, he had not had an operation on his own nose, but that's by the by really issn't it?
After looking at the results, asking mundane questions etc, his first question was 'do you like to play at Poker?' Oh christ, a surgeon with a sense of humour. Why? Because he was going to give me 2 options and one of those was less sure than the other.
He drew on my breasts with his marker and explained the first option: a breast reduction for both breasts which included taking out the tumor and the calcifications - like the quadrant but with a nicer looking result instead of me looking like a shark had bit me.
Option 1 Bad points:
- There would be a risk that they don't take out all the bad stuff.
- If there was still cancer I would have to have a masectomy for the left breast, nothing else would be proposed. We would know around 3 months afterwards although cancer can develop later too, however I would be monitored closely.
- Breasts would be significantly smaller
- may have to do radiation afterwards
Option 1 Good points:
I would have nicer looking breasts and they would be pretty perky and possibly all the cancer would be gone. I would keep both nipples.
Option 2
Masectomy of left breast with reconstruction using fat injections from my own body with breast reduction of right breast to match left.
Option 2 Bad points:
Lose my breast, and eventually both breasts would be smaller
Option 2 Good points:
More chance of getting all the cancer but nothing is sure as Patrice said
Dr Pink had told me that they would do an immediate reconstruction using my body skin and fat. Ah but no dear reader, told you, they don't always tell the truth. This nugget was for me the only saving grace for the masectomy, I would go under with 2 and wake up with 2 breasts. This sweetener was put back into the sweetie jar last night.
Option 2 very bad point: The reconstruction would be done with injections of my own fat (and he noted I had plenty of adipose to spare). However, the reconstruction would be done 6 months later to allow the skin to go stronger and mend after the op. And the reconstruction would be over 4 appointments over 6 months. So in one year I would have both breasts the same size (but smaller) and no nipple on the left (although they can tattoo and do stuff for that).
So I would spend 6 months with one very large breast and nothing on the other side except a false one in a bra.
Both operations will be 4 weeks recovery and 2 - 3 days in hospital.
Both operations would involve taking out a sentinel lymph node to see if the cancer has spread and this of course is another story.
It is entirely my choice between option 1 & 2
What would you choose?
Sunday 8 September 2013
I'm not alone, not at all
My lovely friend F who I met when we were both expecting our first babies together has had her fair share of troubles in the health department and she said she had experienced many of the same feelings as I'd expressed in my blog.
- a feeling fairly close to disgust for those medical people who can't be bothered to show some compassion. I had some counselling back in the spring and I sobbed through 5 of 6 sessions apart from the one where we discussed my feelings about these people. Now I know that the solution to my habit of crying too easily is simply to get very, very angry.
- even those doctors who are competent and really trying to help tend to be like mechanics. They really want to fix the engine, but they don't waste too much energy trying to protect the trim. (can you tell she has worked in the car industry?)
- closed door conversations behind doors so kids can't hear. Sunglasses needed afterwards.
- the journey as a walk down a corridor, behind which are various monsters, that may or may not be scary. Some of the doors I've not had to open, some I've opened and the monsters have been less scary than I expected, and some have opened and they've been really quite nasty. But still i guess I'm walking down the corridor.
- feeling like a horse that's got to a jump that they are just refusing to go over. I've had one of these already where I thought 'I just can't do that', but as it turned out I had no choice and I did it, and it's ok now. I've got a new one now - nasty drug is making my hair fall out.
I'm not sure if it makes it better or worse to know that other people can recognise some of what you feel- I hope it helps.
Yes darling that helps, thank you.
- and my lovely anonymous message-er who has already passed down the same path as I am faced with
I know this is an awful time and this will sound weird to you now (but it won't later, trust me) : You are SO lucky that they've found it early and that it's not a life sentence. You need to give the doctors the opportunity to make you well again, which they will. They'll give you a second life. You've been doing so well. Stay strong because your kids need you, your DH needs you and you need you !
Coming to terms with a mastectomy is *really* hard. I was given no option. I was basically told, "What we normally do in these circumstances is ..." By that time I felt that my life was so totally out of my control and I was so dependent on doctors to make decisions for me, that I accepted it with a stiff upper lip and few tears. I mean, what effing choice do you (did I) HAVE ?!! As if we're even half way qualified to say NO to that ! I wanted rid of the cancer for ever and a mastectomy is by FAR the best way of guaranteeing that. If the doctors themselves aren't sure how effective a lumpectomy + radiotherapy would be, then for ever after you'll be worrying incessantly if they "got it all out". For your own peace of mind, if you have a mastectomy you won't have to worry about that. It will go and you'll never have to worry about getting breast cancer in that breast ever again.
Thank you. I don't feel any better or ready but I know you are talking good sense that only you would have been able to tell me from your experience.
- a feeling fairly close to disgust for those medical people who can't be bothered to show some compassion. I had some counselling back in the spring and I sobbed through 5 of 6 sessions apart from the one where we discussed my feelings about these people. Now I know that the solution to my habit of crying too easily is simply to get very, very angry.
- even those doctors who are competent and really trying to help tend to be like mechanics. They really want to fix the engine, but they don't waste too much energy trying to protect the trim. (can you tell she has worked in the car industry?)
- closed door conversations behind doors so kids can't hear. Sunglasses needed afterwards.
- the journey as a walk down a corridor, behind which are various monsters, that may or may not be scary. Some of the doors I've not had to open, some I've opened and the monsters have been less scary than I expected, and some have opened and they've been really quite nasty. But still i guess I'm walking down the corridor.
- feeling like a horse that's got to a jump that they are just refusing to go over. I've had one of these already where I thought 'I just can't do that', but as it turned out I had no choice and I did it, and it's ok now. I've got a new one now - nasty drug is making my hair fall out.
I'm not sure if it makes it better or worse to know that other people can recognise some of what you feel- I hope it helps.
Yes darling that helps, thank you.
- and my lovely anonymous message-er who has already passed down the same path as I am faced with
I know this is an awful time and this will sound weird to you now (but it won't later, trust me) : You are SO lucky that they've found it early and that it's not a life sentence. You need to give the doctors the opportunity to make you well again, which they will. They'll give you a second life. You've been doing so well. Stay strong because your kids need you, your DH needs you and you need you !
Coming to terms with a mastectomy is *really* hard. I was given no option. I was basically told, "What we normally do in these circumstances is ..." By that time I felt that my life was so totally out of my control and I was so dependent on doctors to make decisions for me, that I accepted it with a stiff upper lip and few tears. I mean, what effing choice do you (did I) HAVE ?!! As if we're even half way qualified to say NO to that ! I wanted rid of the cancer for ever and a mastectomy is by FAR the best way of guaranteeing that. If the doctors themselves aren't sure how effective a lumpectomy + radiotherapy would be, then for ever after you'll be worrying incessantly if they "got it all out". For your own peace of mind, if you have a mastectomy you won't have to worry about that. It will go and you'll never have to worry about getting breast cancer in that breast ever again.
Thank you. I don't feel any better or ready but I know you are talking good sense that only you would have been able to tell me from your experience.
sleep comes
After a suprise visit from my very own personal dealer, I took a pill last night (for the first time ever) and had the first good night's deep sleep that I've had for weeks. Thank you L, I really needed the break, you were right.
Quiet, sad and confused today whilst trying to live a 'normal' life and do nice things with the kids, but my head is elsewhere, I feel like I'm watching myself living, I'm far away somewhere. Still not decided what to do next. Thoughts of a masectomy disgust me as much as they did on Thursday.
Quiet, sad and confused today whilst trying to live a 'normal' life and do nice things with the kids, but my head is elsewhere, I feel like I'm watching myself living, I'm far away somewhere. Still not decided what to do next. Thoughts of a masectomy disgust me as much as they did on Thursday.
Friday 6 September 2013
Surrounded by love
dh wouldn't leave me alone today. Luckily Miss Texas offered to spend the day with me (otherwise he would have missed yet another day or work). A day with my state of mind frankly, not something to look forward to if I was her, but she walked in smiling up to the job.
The Scottish bird also had me marked and threatened to handcuff me to the sofa to stop me wandering, or at least to metro across the city to keep me indoors and safe from harm.
Yes, there were tears and lots and lots of words, stories exchanged and chocolates and croissants and trashy mags - thanks MT. And help - I had invited 6 children to dine at lunchtime so it was quite the operation to get them fed and watered. In fact they were extremely well behaved. L also made a surprise visit, looking all glam.
It was just great to spend a day talking amongst friends where I felt I could say anything and nothing would shock - in English too! MT and L helped me to organise all my papers and health claim papers. It felt good to be organised. I had just been chucking it all in a bag with no order and not finding the papers I needed them. Disorganised, a bit like my mind right now. It is so difficult to adjust to a new plan that I didn't want. I had just become ok with the op on Monday and had high hopes to recover quickly. This new way is a whole different kettle of fish - much bigger and scarier prospect. It feels like everything has just been thrown in the air.
Found out that L is a very speedy kitchen cleaner and MT gives great hugs and chops carrots really quickly.
Gave a few people a fright with my post last night. Sorry, I was rock bottom (at least as rock bottom as I have gone so far, but I have a horrible feeling that there may be more rocks to hit at a later date). At this point I have not managed to reconcile myself with the possible courses of action and I am not convinced that I am mentally and physically capable of following the suggested path. Lots of feedback and 'suivi' from friends today regarding the new situation, it is welcomed and apologies to those texts or mails I haven't replied to as yet. Thank you thank you.
The path has taken a turning I was hoping not to take into a dark wood with lots of monsters along the way. It is scary and I am hesitating to take the first step.
I hope to sleep tonight (I haven't properly slept for a few nights now) and to sleep in tomorrow morning. My mind is everywhere but it has really helped to talk so much today. And I hope to do some nice stuff this weekend. The strain is showing on all of us. We need a break.
Life in the cancer lane starts again on Monday at 18h with the appointment with the plastic surgeon.
The Scottish bird also had me marked and threatened to handcuff me to the sofa to stop me wandering, or at least to metro across the city to keep me indoors and safe from harm.
Yes, there were tears and lots and lots of words, stories exchanged and chocolates and croissants and trashy mags - thanks MT. And help - I had invited 6 children to dine at lunchtime so it was quite the operation to get them fed and watered. In fact they were extremely well behaved. L also made a surprise visit, looking all glam.
It was just great to spend a day talking amongst friends where I felt I could say anything and nothing would shock - in English too! MT and L helped me to organise all my papers and health claim papers. It felt good to be organised. I had just been chucking it all in a bag with no order and not finding the papers I needed them. Disorganised, a bit like my mind right now. It is so difficult to adjust to a new plan that I didn't want. I had just become ok with the op on Monday and had high hopes to recover quickly. This new way is a whole different kettle of fish - much bigger and scarier prospect. It feels like everything has just been thrown in the air.
Found out that L is a very speedy kitchen cleaner and MT gives great hugs and chops carrots really quickly.
Gave a few people a fright with my post last night. Sorry, I was rock bottom (at least as rock bottom as I have gone so far, but I have a horrible feeling that there may be more rocks to hit at a later date). At this point I have not managed to reconcile myself with the possible courses of action and I am not convinced that I am mentally and physically capable of following the suggested path. Lots of feedback and 'suivi' from friends today regarding the new situation, it is welcomed and apologies to those texts or mails I haven't replied to as yet. Thank you thank you.
The path has taken a turning I was hoping not to take into a dark wood with lots of monsters along the way. It is scary and I am hesitating to take the first step.
I hope to sleep tonight (I haven't properly slept for a few nights now) and to sleep in tomorrow morning. My mind is everywhere but it has really helped to talk so much today. And I hope to do some nice stuff this weekend. The strain is showing on all of us. We need a break.
Life in the cancer lane starts again on Monday at 18h with the appointment with the plastic surgeon.
Thursday 5 September 2013
Sweet and sour
Z came round this morning with a meal package - galettes, eggs, ham and a bottle of cider. I thought she was just coming round for a coffee and she refused to move unless I got my ironing and board and we sat there, me drinking green tea, her doing my ironing. It was great! Thanks Z.
I had an appointment with an alternative type of counsellor today, I felt some energy going back into my cold hard body.
And then it went away. The surgeon's secretary called at 17h30 asking me for an appointment with him at the hospital he works in on Thursdays at 19h. I expected the worst as I knew he had the Commission Oncology 94 on Tuesday evenings where they discuss all the cases. I knew the oncologist and the surgeon wanted me to keep my breast so I was hoping and was pretty sure things would just go ahead as planned on Monday.
But no, the Commission have decided that I need my breast amputating. Yes a masectomy. The op is cancelled, I have to see a plastic surgeon on Monday so he can maim me for ever. I want to die, really. I cannot do this, I cannot. The news just gets worse and worse. Apparently the tumor is too large to take any chances and there may be others hidden. I'm sure now that the cancer will be mastisied and I'll be doing chemo before long. Why not? All the other news has been progressively worse and worse. Just kill me now and have done with it. What have I done to deserve this?
I cannot live like this without my best feature, I cannot I cannot I cannot. Really, please don't tell me others have done it, it's been ok, they are still alive, think of the kids and my husband I KNOW all this. I cannot.
I had an appointment with an alternative type of counsellor today, I felt some energy going back into my cold hard body.
And then it went away. The surgeon's secretary called at 17h30 asking me for an appointment with him at the hospital he works in on Thursdays at 19h. I expected the worst as I knew he had the Commission Oncology 94 on Tuesday evenings where they discuss all the cases. I knew the oncologist and the surgeon wanted me to keep my breast so I was hoping and was pretty sure things would just go ahead as planned on Monday.
But no, the Commission have decided that I need my breast amputating. Yes a masectomy. The op is cancelled, I have to see a plastic surgeon on Monday so he can maim me for ever. I want to die, really. I cannot do this, I cannot. The news just gets worse and worse. Apparently the tumor is too large to take any chances and there may be others hidden. I'm sure now that the cancer will be mastisied and I'll be doing chemo before long. Why not? All the other news has been progressively worse and worse. Just kill me now and have done with it. What have I done to deserve this?
I cannot live like this without my best feature, I cannot I cannot I cannot. Really, please don't tell me others have done it, it's been ok, they are still alive, think of the kids and my husband I KNOW all this. I cannot.
Tuesday 3 September 2013
Hotel room booked!
Passed by the hospital to see Nathalie today and took the prescriptions for the exams next week plus a hospital admittance form so I checked in for my stay from Monday to Thursday choosing a single room with private shower. Some privacy in my misery!
The admittance procedure was very smooth and short and helpful. Normally children are not allowed to visit me so I might have to come downstairs to see them. I hope they do come because I think I'd be more sad without them and they will be curious as to what's going on with me.
Had to tell a few more friends today now they are back from holidays. Must try to stop the tears pricking when I tell them, I can't be easy to be told news like that. Yet more offers of helping with the kids, which is great and much appreciated.
It's La Rentrée today so we saw the children off to school - it's good for them to get into the swing of things after such a long break. It will do them good. I feel really tired now I'm on my own and am rather tearful, I think my body is relaxing after looking after the children and having to keep it together for so long in front of them. I am more fragile than I thought I suspect.
Really enjoying seeing the sun today, it's so warm here and sunny. I enjoyed buying some healthy food on the market this morning.
The admittance procedure was very smooth and short and helpful. Normally children are not allowed to visit me so I might have to come downstairs to see them. I hope they do come because I think I'd be more sad without them and they will be curious as to what's going on with me.
Had to tell a few more friends today now they are back from holidays. Must try to stop the tears pricking when I tell them, I can't be easy to be told news like that. Yet more offers of helping with the kids, which is great and much appreciated.
It's La Rentrée today so we saw the children off to school - it's good for them to get into the swing of things after such a long break. It will do them good. I feel really tired now I'm on my own and am rather tearful, I think my body is relaxing after looking after the children and having to keep it together for so long in front of them. I am more fragile than I thought I suspect.
Really enjoying seeing the sun today, it's so warm here and sunny. I enjoyed buying some healthy food on the market this morning.
Doctors' receptionists
Warning, there may be some swear words to come.....I needed to make two appointements today - one with the anesthesiologist and the other for the steroataxique wire thingie. It was a day that ended in floods of tears and much stress unfortunately.
When I asked for an appointment on the phone the anesthesiologist's secretary said 'you're being operated when? when? really?' well there are no appointments this week, no room at all.' Full stop. At this point, what are you actually meant to say? Oh thanks ok I'll cancel my operation then? What do they expect? This often happens in France, people come out with an immediate 'no it's not possible' then they stop speaking whilst you catch your breath and have to think of an appropriate response. I swear it's done on purpose to push those get angry buttons.
My response today was 'fuck you bitch and your bastard bad Monday attitude, you have a job to do so do it and don't treat me like I have to beg you, you are not doing me a personal favour, I have breast cancer and I need an appointment to get this frickin tumor out of my breast so I don't die - it is not my pleasure to call your stupid ass, it is something I am obliged to do, so either you make some time in his calendar or I will come round with a machine gun after killing your family and pets and you will find a space for me'
Ha, na, just kidding, I held my ground and repeated my request. She grudgingly fitted me in on Friday at 18h40. I asked her where the offices were and she said 'oh the hospital isn't that large, you'll find us.' So I insisted again and now I know.
Then, onto the second appointment. I called the place where I had my biopsies done and had another argument with the receptionist when I asked for this particular test, she said ' no you don't tell us what test you want, the doctor examines you and he decides'. Anyway, after that little argument it turns out the dr isn't even there on a Monday so that was out. So I called the surgeon's secretary, Nathalie. She gave me the name of a place not too far from our town. I called and the receptionist said 'oh we don't do that test here, this the name of another place in 12th that does it'. Ok, bizzare, so I called that hospital and waited, got transferred to the wrong place, got cut off, called back, waited, transferred to the wrong place and finally spoke to someone who said that they absolutely do not do this test for people outside the hospital and if I wanted the appointment, my surgeon had to call. This is where the conversation became a little like the imaginary one above with my cutting off before the death threats.
And then my legs started to shake and I sobbed. Enough already.
This is where dh becomes darling hero not dear husband. I called him crying, sent him an email with all the details. He called Nathalie again and he started the same circuit as me getting the 'no we don't do those tests here' so he spoke with Nathalie again and she said she'd call them tomorrow as she was too busy today. I told dh to call the oncologist, Patrice, who was not impressed and took a trip down the corridor to have a chat with busy Nathalie.
She called me back within 20 minutes and I have an appointment at 11h on Friday at the place that 'doesn't do these tests' not too far from our home. Result, but with what consequences? I was seriously knocked out of shape and ended up weeping in front of my kids. I know this might sound like an over reaction and I didn't realise how strung out and close to the edge I was until today.
Really I think these women (and they are always women) are either incompetent or complete bitches. Why?
I am longing to meet those dedicated, kind and caring professionals that health care needs, I hope very much I meet them in hospital when I need them most.
When I asked for an appointment on the phone the anesthesiologist's secretary said 'you're being operated when? when? really?' well there are no appointments this week, no room at all.' Full stop. At this point, what are you actually meant to say? Oh thanks ok I'll cancel my operation then? What do they expect? This often happens in France, people come out with an immediate 'no it's not possible' then they stop speaking whilst you catch your breath and have to think of an appropriate response. I swear it's done on purpose to push those get angry buttons.
My response today was 'fuck you bitch and your bastard bad Monday attitude, you have a job to do so do it and don't treat me like I have to beg you, you are not doing me a personal favour, I have breast cancer and I need an appointment to get this frickin tumor out of my breast so I don't die - it is not my pleasure to call your stupid ass, it is something I am obliged to do, so either you make some time in his calendar or I will come round with a machine gun after killing your family and pets and you will find a space for me'
Ha, na, just kidding, I held my ground and repeated my request. She grudgingly fitted me in on Friday at 18h40. I asked her where the offices were and she said 'oh the hospital isn't that large, you'll find us.' So I insisted again and now I know.
Then, onto the second appointment. I called the place where I had my biopsies done and had another argument with the receptionist when I asked for this particular test, she said ' no you don't tell us what test you want, the doctor examines you and he decides'. Anyway, after that little argument it turns out the dr isn't even there on a Monday so that was out. So I called the surgeon's secretary, Nathalie. She gave me the name of a place not too far from our town. I called and the receptionist said 'oh we don't do that test here, this the name of another place in 12th that does it'. Ok, bizzare, so I called that hospital and waited, got transferred to the wrong place, got cut off, called back, waited, transferred to the wrong place and finally spoke to someone who said that they absolutely do not do this test for people outside the hospital and if I wanted the appointment, my surgeon had to call. This is where the conversation became a little like the imaginary one above with my cutting off before the death threats.
And then my legs started to shake and I sobbed. Enough already.
This is where dh becomes darling hero not dear husband. I called him crying, sent him an email with all the details. He called Nathalie again and he started the same circuit as me getting the 'no we don't do those tests here' so he spoke with Nathalie again and she said she'd call them tomorrow as she was too busy today. I told dh to call the oncologist, Patrice, who was not impressed and took a trip down the corridor to have a chat with busy Nathalie.
She called me back within 20 minutes and I have an appointment at 11h on Friday at the place that 'doesn't do these tests' not too far from our home. Result, but with what consequences? I was seriously knocked out of shape and ended up weeping in front of my kids. I know this might sound like an over reaction and I didn't realise how strung out and close to the edge I was until today.
Really I think these women (and they are always women) are either incompetent or complete bitches. Why?
I am longing to meet those dedicated, kind and caring professionals that health care needs, I hope very much I meet them in hospital when I need them most.
Sunday 1 September 2013
Friends and cancer
When fighting cancer, the support of friends is as important as the love of close family
It’s not stress that pushes a cancer to grow faster: it’s the feeling of helplessness that we sometimes develop when we’re facing stress. This is accompanied by abnormalities in cortisol, which when they persist can prevent the immune system from doing its work, and increase inflammation in the body. The best defense against the feeling of helplessness is to find support from people around you.David Servan Schreiber
I am so utterly grateful for the emails, calls, cards, presents, offers of help, visits, kind words, hugs and everything that has come pouring out of my friends (and some strangers) in floods. You have no idea how much it means that you are bothering to read my blog, that you are keeping in touch with me in different ways. Every day there are emails and texts or cards or blog comments or messages from people thinking about me and it cheers and bolsters me in a way that nothing else could do.
We should all do this for each other whether we are ill or not. Go on, send a message to a friend saying that you are thinking about them right now. Go on, do it, it's good for their health!
Thank you. We will have a party when this is all done.
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