I was expecting and had prepared myself mentally to start the radiotherapy treatment on Thursday. I saw the psychologist then a taxi picked me up to take me to the hospital. I was called pretty quickly and had the disappointing news that the doctor wasn't happy with the preparation done on Tuesday and she wanted to increase the zone to be treated by a few millimetres.
So back in the same room with the same machine doing the same process as before. Once again, the scary machine whirring and buzzing around my head and body. I looked at the peaceful mountain scene on the ceiling and waited for the manipulators to do their bit.
My appointment on Friday was also cancelled and I'll start the radiotherapy treatment proper on Monday.
After I saw the doctor, as I would every Thursday afternoon, to see how things are going. I was glad to get a better explanation of how the treatment works. Basically, the whole 'breast' area (I don't really consider that I have a breast any longer, just a lump of fat on my chest) is treated for 25 sessions then the last 8 sessions will involve a more intense treatment (using photons and electrons) on the area where the tumour was taken out. I didn't ask but I think the area where the tumor was doesn't exist any longer because it's been chopped off, I'll have to get my brain together to ask more questions next week.
I'm a bit puzzled about after treatment to avoid burns right now too as I heard a nurse speaking loudly to an old lady telling her not to put cream on the burnt area as it makes it even worse. Confused.
My little book from Etincelle tells me that the radiation basically acts on the cells' DNA (healthy and unhealthy cells, all of them) in the treated area and eventually destroys the cells because after a while, they try to repair themselves (because they notice that the radiation has damaged them) by multiplying and then die because they cannot multiply because they've been radiated. So new ones grow to replace them and the new ones are healthy ones. Radiotherapy is measured in units of Gray -Gy after the English physician.
The delay in beginning the treatment means that I'll be in the most intensive phase at Christmas, over the holiday period and school holidays which is really really crap timing. The end of the treatment should be in early January but, according to how the treatment is going, the number of sessions per week can be reduced to four or three if the secondary effects are too intense, so that too will elongate the treatment time.
I have a whole different depressing post about the research I've done on side effects of this treament. At the moment, though it's affecting me very deeply and I feel like I'm cracking up in my head.
Saturday, 16 November 2013
Greetings from the US of A
I have been really really touched to recieve so many lovely cards with good wishes. I've displayed them in the living room and every time I look at them I have a good feeling inside.
Here's one I received last week, a big surprise, from a lovely American friend who has just moved back to set up her own restaurant with her dh in one of the southern states. I didn't know that she knew I'd been going through treatments. I don't know how she found out but I was touched that she went to the trouble of showing me that she cared and sending not one but two cards!
Here they are
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Only the USA could have a occasion card for cancer! I loved both of these cards, they are funny, poignant and sweet. Thank you my friend!
Here's one I received last week, a big surprise, from a lovely American friend who has just moved back to set up her own restaurant with her dh in one of the southern states. I didn't know that she knew I'd been going through treatments. I don't know how she found out but I was touched that she went to the trouble of showing me that she cared and sending not one but two cards!
Here they are
Only the USA could have a occasion card for cancer! I loved both of these cards, they are funny, poignant and sweet. Thank you my friend!
Thursday, 14 November 2013
Radiotherapy appointment 2
I went to the appointment alone on public transport and I think it was a mistake to go alone.
Easier to find the radio/chemo wing this time so no more wandering around searching and I arrived in the right place no problem.
The waiting room was full of unhappy looking folk and the radiotherapy waiting room only had a couple of people - a very emaciated old lady wearing a headscarf (who, despite her ill looking appearance was actually quite sparky) and a lady in her sixties with a wig. I just don't see myself as an ill person and coming to this place reminds me of my illness and makes me feel much more isolated from the world outside and much more part of this horrible, sad world of ill people.
The turnover of patients was pretty quick and the waiting time didn't seem too long. I was seen within 20 mins of my appointment time.
I was called and went into a little changing cubicle, took off my top and was told to keep my cardigan on until the treatment room and asked to wait for the radiologist to fetch me from the cubicle. Then I was led down a short corridor into the treatment room. The radiation apparatus is extremely large and very impressive and overwhelming. Huge. I was told to lie down and put my arm above my head and to stay absolutely still.
The aim of the appointment was to situate me on the machine so that the rays would be hitting my breast and avoiding my lungs and heart. Once in position, I was left in the room with the radiologist issuing instructions through an intercom. They came in to change the level of the table or the angle and to measure with a ruler and various apparatus from time to time.
I have to say up until this moment, the only moment I had felt really really scared, frightened, panicked was the moment just before I went under before the operation. I've had (and still have) fear and worries - those that give you a dull feeling in your stomach or keep you awake at night or gnaw away at your thoughts and occupy your head. But actual fright came to me yesterday lying on that huge machine that was whirring and whizzing around me, parts of it moving up, down and things I wasn't able to see. At one point a huge plate of metal with a camera in it, the size of a cupboard, moved very close to my face and I very nearly panicked totally and got up. I feel like crying even as I write this and recall the feelings I had back there.
I know I'll get used to this after 33 sessions but this first 'try out' was really freaky and made me cry. I so do not want to do this.
Easier to find the radio/chemo wing this time so no more wandering around searching and I arrived in the right place no problem.
The waiting room was full of unhappy looking folk and the radiotherapy waiting room only had a couple of people - a very emaciated old lady wearing a headscarf (who, despite her ill looking appearance was actually quite sparky) and a lady in her sixties with a wig. I just don't see myself as an ill person and coming to this place reminds me of my illness and makes me feel much more isolated from the world outside and much more part of this horrible, sad world of ill people.
The turnover of patients was pretty quick and the waiting time didn't seem too long. I was seen within 20 mins of my appointment time.
I was called and went into a little changing cubicle, took off my top and was told to keep my cardigan on until the treatment room and asked to wait for the radiologist to fetch me from the cubicle. Then I was led down a short corridor into the treatment room. The radiation apparatus is extremely large and very impressive and overwhelming. Huge. I was told to lie down and put my arm above my head and to stay absolutely still.
The aim of the appointment was to situate me on the machine so that the rays would be hitting my breast and avoiding my lungs and heart. Once in position, I was left in the room with the radiologist issuing instructions through an intercom. They came in to change the level of the table or the angle and to measure with a ruler and various apparatus from time to time.
I have to say up until this moment, the only moment I had felt really really scared, frightened, panicked was the moment just before I went under before the operation. I've had (and still have) fear and worries - those that give you a dull feeling in your stomach or keep you awake at night or gnaw away at your thoughts and occupy your head. But actual fright came to me yesterday lying on that huge machine that was whirring and whizzing around me, parts of it moving up, down and things I wasn't able to see. At one point a huge plate of metal with a camera in it, the size of a cupboard, moved very close to my face and I very nearly panicked totally and got up. I feel like crying even as I write this and recall the feelings I had back there.
I know I'll get used to this after 33 sessions but this first 'try out' was really freaky and made me cry. I so do not want to do this.
Bone scan
Patrice had given me a prescription for a bone scan 'just to check', he was a bit vague about what this meant but I took the prescription and thought it's another thing to do. I left it a week as I had just had enough of the medical interventions and tests and check ups.
The exam is called a scintigraphie.
http://www.cancer.be/la-scintigraphie-osseuse
I rang the specialised centre that does them and they insisted that it was done before the radiotherapy began so the race was on because the only day they offered was the following day. The complication was that the centre is around 20km from our home and I needed someone to drive me there and back not just once but twice the next day.
So I called friends and was lucky enough to find two good people that were free and able to drive me, wait and drive me home again. So first visit to the centre was to be injected with a radioactive substance. I am practised in my 'needle' speech now and the doctor promised I wouldn't feel a thing as they used baby needles. And just for once, I didn't feel anything and they were telling the truth! Hurrah. I asked for some clarification as to why exactly I was doing this test and the doctor told me that it was to check that there was no metastases from the original cancer and that there were no other cancers in the bones. She explained that it was important to do this test before the radiotherapy because the protocol would have to change if they found anything on that day (ie chemotherapy would replace the radiotherapy).
So this test suddenly became, in my head, much more important than I had thought.
I spent a few hours at home and reassuring Z picked me up and we headed on out to the centre again for the scan which was pretty scary. I could keep my clothes on (this was already a good thing, however). I lay down on the platform which was was going to go into a tunnel with a camera which came very close to the body, almost touching so I would be totally enclosed in a very small space and not able to move for 15 minutes. Just before the assistant left me on my own in the room after explaining what would happen, he suggested I closed my eyes. This was excellent advice.
So I closed my eyes and felt the bed moving forward and the feeling of the space getting smaller. In fact the camera was so close to my body that when I breathed, my ribs touched the camera and it retracted. So glad not to have my eyes open! I kept my eyes firmly closed and imagined that I was lying down in a small boat on a turquoise sea under the shining sun and I stayed there until the guy told me the test was over and was surprised to see that the bed had come out of the tunnel already.
I was told to go into the waiting area and see the receptionist where I received an envelope with my results. I went to see my friend who was patiently waiting and we both looked at the envelope and didn't know what to do. I was thinking if the results were ok then they wouldn't need to explain them to me but we wondered if they were so bad then they wanted my oncologist to explain them to me. We were stumped as to whether we should open it or not. There were doctors about and we thought maybe we should ask them. In the end I just opened the envelope and we both read the results' conclusion together. Nothing had been detected - no other cancers and no metastases. Tears came to my eyes and I sighed a big sigh of relief, well we both did. What a horribly stressful day but it ended well with the best results possible. We drove home with a lighter heart but feeling a bit like I'd been on a roller coaster today.
That was a particuarly difficult week, I was glad to see the back of it.
The exam is called a scintigraphie.
http://www.cancer.be/la-scintigraphie-osseuse
I rang the specialised centre that does them and they insisted that it was done before the radiotherapy began so the race was on because the only day they offered was the following day. The complication was that the centre is around 20km from our home and I needed someone to drive me there and back not just once but twice the next day.
So I called friends and was lucky enough to find two good people that were free and able to drive me, wait and drive me home again. So first visit to the centre was to be injected with a radioactive substance. I am practised in my 'needle' speech now and the doctor promised I wouldn't feel a thing as they used baby needles. And just for once, I didn't feel anything and they were telling the truth! Hurrah. I asked for some clarification as to why exactly I was doing this test and the doctor told me that it was to check that there was no metastases from the original cancer and that there were no other cancers in the bones. She explained that it was important to do this test before the radiotherapy because the protocol would have to change if they found anything on that day (ie chemotherapy would replace the radiotherapy).
So this test suddenly became, in my head, much more important than I had thought.
I spent a few hours at home and reassuring Z picked me up and we headed on out to the centre again for the scan which was pretty scary. I could keep my clothes on (this was already a good thing, however). I lay down on the platform which was was going to go into a tunnel with a camera which came very close to the body, almost touching so I would be totally enclosed in a very small space and not able to move for 15 minutes. Just before the assistant left me on my own in the room after explaining what would happen, he suggested I closed my eyes. This was excellent advice.
So I closed my eyes and felt the bed moving forward and the feeling of the space getting smaller. In fact the camera was so close to my body that when I breathed, my ribs touched the camera and it retracted. So glad not to have my eyes open! I kept my eyes firmly closed and imagined that I was lying down in a small boat on a turquoise sea under the shining sun and I stayed there until the guy told me the test was over and was surprised to see that the bed had come out of the tunnel already.
I was told to go into the waiting area and see the receptionist where I received an envelope with my results. I went to see my friend who was patiently waiting and we both looked at the envelope and didn't know what to do. I was thinking if the results were ok then they wouldn't need to explain them to me but we wondered if they were so bad then they wanted my oncologist to explain them to me. We were stumped as to whether we should open it or not. There were doctors about and we thought maybe we should ask them. In the end I just opened the envelope and we both read the results' conclusion together. Nothing had been detected - no other cancers and no metastases. Tears came to my eyes and I sighed a big sigh of relief, well we both did. What a horribly stressful day but it ended well with the best results possible. We drove home with a lighter heart but feeling a bit like I'd been on a roller coaster today.
That was a particuarly difficult week, I was glad to see the back of it.
métastases
métastases
métastases
Thursday, 7 November 2013
Back in hospital
The appointment I've been fretting over arrived today. I have been so weepy and scared about this, not sure why really but it was a fear of the unknown I think.
I was planning to work after the appointment but I learnt that I had to do a scan as well so I when I asked my colleague to look in to my class just in case I was running late, he offered immediately to take the class for me. I felt a huge relief actually. The kindness continues......
A rainy, dull day didn't help, neither did the 20 mins it took us to find a parking space. Neither did the dreadful hospital signage. Neither did the inaudible receptionist behind a thick glass panel who greeted us. Neither did the lack of instruction regarding the admissions procedure. Neither did the 15 minute tour of all the hospital buildings looking for the right place. Neither did the busy nurse who offered to show us the way who then made phone calls, delivered results and spoke to workmen whilst we waited for her. Neither did the room on the right greeting you as you enter the cancer wing full of people in armchairs receiving chemotherapy. Neither did the lack of receptionist nor the nurses who said hello but didn't have time to ask why we were there.
You get the picture we were stressed me and dh. I was ready to leave at this point. I was definitely ready to burst into tears.
I was seen fairly swiftly, however, after finding someone who wasn't too busy to speak.
A pretty, smiling radiologist greeted me and ushered me into a cubicle where she took me, in great detail, what was going to happen today. She answered my questions as if I was the first time she'd heard them, she smiled and she was very very kind and open.
We discussed timing. I had to give her a time slot of a few hours (or one hour the days I was working) and she would then work out suitable appointment times. That day I would pass through a scanner but I would not be injected (big sigh of relief) but I would be tattooed so the machine could be set in the same position each time. I had heard that the tattoos were blue in UK and in US, some are brown in France. Mine are black. They were done just between my breasts and on the side of my left breast and they really bloody hurt! I was promised by Smiling Lady that the result would be smaller than a beauty spot. I was doubtful because medical professionals lie don't they? But in fact she was telling me the truth, I saw the next day that the spot is actually quite hard to find.
Patrice, my oncologist, popped his head round the door and asked me how I was 'stressed' was the answer. He said isn't there a pill for that? Or meditation? I said there were situations that were surpassed even by the sophrologie! He then said 'oh yes it's really going to hurt today, she's going to hurt you bad, she's horrible this one'. The Smiling lady continued to smile and shake her head.
I was scanned and have an appointment to return next week to be placed correctly on the machine - Smiling Lady showed me a photo of the machine, explained what happens during a session down to where I would get undressed, what happens next and so on. I will start radiotherapie next Thursday. 33 sessions, every day apart from weekends, will take me through Christmas and just into 2014.
Breathing a sigh of relief we left the hospital and dh took me out for a lovely tagine. Then because I didn't work I was free to have lunch with dh, which was really lovely after all that stress. Then I went home and slept. Ouf.
I was planning to work after the appointment but I learnt that I had to do a scan as well so I when I asked my colleague to look in to my class just in case I was running late, he offered immediately to take the class for me. I felt a huge relief actually. The kindness continues......
A rainy, dull day didn't help, neither did the 20 mins it took us to find a parking space. Neither did the dreadful hospital signage. Neither did the inaudible receptionist behind a thick glass panel who greeted us. Neither did the lack of instruction regarding the admissions procedure. Neither did the 15 minute tour of all the hospital buildings looking for the right place. Neither did the busy nurse who offered to show us the way who then made phone calls, delivered results and spoke to workmen whilst we waited for her. Neither did the room on the right greeting you as you enter the cancer wing full of people in armchairs receiving chemotherapy. Neither did the lack of receptionist nor the nurses who said hello but didn't have time to ask why we were there.
You get the picture we were stressed me and dh. I was ready to leave at this point. I was definitely ready to burst into tears.
I was seen fairly swiftly, however, after finding someone who wasn't too busy to speak.
A pretty, smiling radiologist greeted me and ushered me into a cubicle where she took me, in great detail, what was going to happen today. She answered my questions as if I was the first time she'd heard them, she smiled and she was very very kind and open.
We discussed timing. I had to give her a time slot of a few hours (or one hour the days I was working) and she would then work out suitable appointment times. That day I would pass through a scanner but I would not be injected (big sigh of relief) but I would be tattooed so the machine could be set in the same position each time. I had heard that the tattoos were blue in UK and in US, some are brown in France. Mine are black. They were done just between my breasts and on the side of my left breast and they really bloody hurt! I was promised by Smiling Lady that the result would be smaller than a beauty spot. I was doubtful because medical professionals lie don't they? But in fact she was telling me the truth, I saw the next day that the spot is actually quite hard to find.
Patrice, my oncologist, popped his head round the door and asked me how I was 'stressed' was the answer. He said isn't there a pill for that? Or meditation? I said there were situations that were surpassed even by the sophrologie! He then said 'oh yes it's really going to hurt today, she's going to hurt you bad, she's horrible this one'. The Smiling lady continued to smile and shake her head.
I was scanned and have an appointment to return next week to be placed correctly on the machine - Smiling Lady showed me a photo of the machine, explained what happens during a session down to where I would get undressed, what happens next and so on. I will start radiotherapie next Thursday. 33 sessions, every day apart from weekends, will take me through Christmas and just into 2014.
Breathing a sigh of relief we left the hospital and dh took me out for a lovely tagine. Then because I didn't work I was free to have lunch with dh, which was really lovely after all that stress. Then I went home and slept. Ouf.
Snap happy surgeon
Monday was the first time I'd seen the surgeon for 2 weeks. The daily nurses have been busy scratching away at my nipple scabs so I was hoping he'd approve the progress and not have to cut and scrape again today. He was happy with the progress. The left is almost healed although it bleeds a bit. The right is still an open wound but the flesh has grown higher nearly up to the level of the rest. He explained that the wound would scab and heal over so the nipple has a pinched effect. Not perfect, not as beautiful as it was, not normal and annoying since this side is the side that was not affected by the cancer, so another price to pay.
I know, a relatively small price, but nonetheless. He can maybe do something surgical one day to improve the look.
He took some more photos with his iphone (not my face!)
He said how do you like the breasts because I think they are not bad, maybe they are too small for your liking though - question mark. I said well to be honest I haven't looked at them yet but I am just looking forward to the augmentation a year after the radiotherapie has finished. He was shocked and said that I should be looking at them now. I explained that I didn't want to because although I respected his work, it was my body and I didn't want to look at it. He immediately sprung into action and said ok , let me show you the photos, I said nononononono then he changed tack and said why don't I show you some pictures of someone else who had the same thing and you tell me what you think? At this point I was lying down waiting for the compresses so he kinda put his phone in my face and said well what do you think?
He's not a smart as he thought because my distinctive Baccarat necklace was on the body in the picture so unless someone had stolen my necklace, it was obviously me. I just said yes well it's me. He said 'and?' I just shrugged my shoulders. He said again that I really ought to look myself.
I'm not sure how I feel about his approach. I sort of expected some kind of pressure from him and if I hadn't been wearing my necklace his trick might have worked and I would have said something polite about 'someone elses' breasts. But I also think he should have respected my wishes and not been so maladroit. Still, I didn't really look although I did see that the lower body just under the breasts looked smaller than I thought my body would look so maybe his trick worked (a bit) but I'm not looking myself.
I saw the psychologist in the afternoon, not the listening blonde but the unexpressive brunette - she works for our town in the psychology service which is free for residents. I've seen her a few times now.
It was a positive session because I really talked and cried and cried a lot afterwards. I did admit that not seeing my full body was the only thing I could control in a situation that, since August, I have had virtually no control over, so I was pretty miffed about the pressure today from the surgeon; she thought it was a bit out of order (well I gathered that by her frown and raised eyebrows which is the nearest she gets to emotion), but she did make the point that perhaps I was imagining worse things than the actual situation so if I looked I might be relieved. It was good to see her that day; I was very tense about the meeting the next day. I also explained that so many people are saying to me 'oh the radiotherapie, it's nothing, no problem, it's just lying there, you're not going to lose your hair'. She thought that, next to the chemo, for which there's very obvious side effects, the radiotherapie had hidden side effects and is also much less harsh than the chemo. It also means that the cancer has probably not spread so in itself, it's a therapy that means that my situation is considered less extreme than many others, so it is truly something to be grateful for. But in itself as a therapy, it is not nothing, nor easy, nor just lying there, it has it's own side effects and it's simply a much less intrusive therapy, but a therapy nontheless.
btw dh thinks that the surgeon is right and did the right thing encouraging me to look.
I know, a relatively small price, but nonetheless. He can maybe do something surgical one day to improve the look.
He took some more photos with his iphone (not my face!)
He said how do you like the breasts because I think they are not bad, maybe they are too small for your liking though - question mark. I said well to be honest I haven't looked at them yet but I am just looking forward to the augmentation a year after the radiotherapie has finished. He was shocked and said that I should be looking at them now. I explained that I didn't want to because although I respected his work, it was my body and I didn't want to look at it. He immediately sprung into action and said ok , let me show you the photos, I said nononononono then he changed tack and said why don't I show you some pictures of someone else who had the same thing and you tell me what you think? At this point I was lying down waiting for the compresses so he kinda put his phone in my face and said well what do you think?
He's not a smart as he thought because my distinctive Baccarat necklace was on the body in the picture so unless someone had stolen my necklace, it was obviously me. I just said yes well it's me. He said 'and?' I just shrugged my shoulders. He said again that I really ought to look myself.
I'm not sure how I feel about his approach. I sort of expected some kind of pressure from him and if I hadn't been wearing my necklace his trick might have worked and I would have said something polite about 'someone elses' breasts. But I also think he should have respected my wishes and not been so maladroit. Still, I didn't really look although I did see that the lower body just under the breasts looked smaller than I thought my body would look so maybe his trick worked (a bit) but I'm not looking myself.
I saw the psychologist in the afternoon, not the listening blonde but the unexpressive brunette - she works for our town in the psychology service which is free for residents. I've seen her a few times now.
It was a positive session because I really talked and cried and cried a lot afterwards. I did admit that not seeing my full body was the only thing I could control in a situation that, since August, I have had virtually no control over, so I was pretty miffed about the pressure today from the surgeon; she thought it was a bit out of order (well I gathered that by her frown and raised eyebrows which is the nearest she gets to emotion), but she did make the point that perhaps I was imagining worse things than the actual situation so if I looked I might be relieved. It was good to see her that day; I was very tense about the meeting the next day. I also explained that so many people are saying to me 'oh the radiotherapie, it's nothing, no problem, it's just lying there, you're not going to lose your hair'. She thought that, next to the chemo, for which there's very obvious side effects, the radiotherapie had hidden side effects and is also much less harsh than the chemo. It also means that the cancer has probably not spread so in itself, it's a therapy that means that my situation is considered less extreme than many others, so it is truly something to be grateful for. But in itself as a therapy, it is not nothing, nor easy, nor just lying there, it has it's own side effects and it's simply a much less intrusive therapy, but a therapy nontheless.
btw dh thinks that the surgeon is right and did the right thing encouraging me to look.
Saturday, 2 November 2013
The Fear
You know what's the worst thing about cancer? Apart from the cutting up of the body and the rays and the drugs and the tests and the aftermath and the permanent physical changes? It's the fear.
It's the fear of the unknown that keeps you up crying in your bed at 4am.
It's the fear when you're due to take a test the next day and you don't know how much it's going to hurt or what you'll have to do or how embarassing it will be.
It's the fear of going into hospital and knowing that your body will be changed for ever and will never be the same.
It's the fear of the test results, even a simple test.
It's the fear of showing your new body to the world and the fear of being judged for it.
It's the fear that people will know you're ill or notice the change in your body but not have the words to talk to you about it and then talk behind your back about you.
It's the fear of starting a long intense treatment and not knowing how it's going to affect you.
It's the fear of worse news to come.
It's the fear that your children won't have a Mum anymore.
It's the fear of a long battle that you just don't feel up to.
It's the fear that you will always be looking over your shoulder.
It's the fear that you will never forget.
It's the fear that it'll come back and all you've been through will be for nothing because it will be back in a different place and you won't know about it unti it's too late.
It's the fear of never really feeling back 'in' the world again, feeling disassociated, distant, not really there, not part of it all, being a spectator or an observer and the fear that you'll never really feel like you're 'there' again.
It's the fear of seeing those people 'worse off than yourself' and instead of feeling grateful that yours is just a 'little manegeable cancer' that one day you will be treading the same path as them.
It's the fear that despite all the efforts of the doctors, there are cells that are right this minute multiplying inside you bringing you bad things.
It's not the death that's frightening, it's the slow downward steps towards it. Death by cancer is not pretty - I've seen it before, many many people have seen it before.
It's like you're standing at the top of cold stone stairs leading down to a black, cold fast runnning river. Normally you'd just be walking by those steps looking down thinking 'oh that looks dangerous and slippy, take care and you warn your children away from them. But then cancer takes you to the top of the stairs and forces you down the first one and sometimes you go down one or two stairs and you spend some time on each one sitting, watching the black water that's just a little bit nearer. Then little by little you have to go down the stairs and your feet get wet, then your legs, your body, your shoulders when finally your head is under and you're swept away. And all the time you know what's happening and you don't want it to happen but you're forced to participate and to descend even though every part of your brain tells you that you don't want to be there. And even if you're cyring and screaming and kicking, you have to go down.
Sometimes people are lucky enough to be able to go back up a step, maybe two or three, but they will always be somewhere on the staircase, where normal people don't have to go, looking at the water.
Sometimes it's just easier to dive straight into the water.
It's the fear of the unknown that keeps you up crying in your bed at 4am.
It's the fear when you're due to take a test the next day and you don't know how much it's going to hurt or what you'll have to do or how embarassing it will be.
It's the fear of going into hospital and knowing that your body will be changed for ever and will never be the same.
It's the fear of the test results, even a simple test.
It's the fear of showing your new body to the world and the fear of being judged for it.
It's the fear that people will know you're ill or notice the change in your body but not have the words to talk to you about it and then talk behind your back about you.
It's the fear of starting a long intense treatment and not knowing how it's going to affect you.
It's the fear of worse news to come.
It's the fear that your children won't have a Mum anymore.
It's the fear of a long battle that you just don't feel up to.
It's the fear that you will always be looking over your shoulder.
It's the fear that you will never forget.
It's the fear that it'll come back and all you've been through will be for nothing because it will be back in a different place and you won't know about it unti it's too late.
It's the fear of never really feeling back 'in' the world again, feeling disassociated, distant, not really there, not part of it all, being a spectator or an observer and the fear that you'll never really feel like you're 'there' again.
It's the fear of seeing those people 'worse off than yourself' and instead of feeling grateful that yours is just a 'little manegeable cancer' that one day you will be treading the same path as them.
It's the fear that despite all the efforts of the doctors, there are cells that are right this minute multiplying inside you bringing you bad things.
It's not the death that's frightening, it's the slow downward steps towards it. Death by cancer is not pretty - I've seen it before, many many people have seen it before.
It's like you're standing at the top of cold stone stairs leading down to a black, cold fast runnning river. Normally you'd just be walking by those steps looking down thinking 'oh that looks dangerous and slippy, take care and you warn your children away from them. But then cancer takes you to the top of the stairs and forces you down the first one and sometimes you go down one or two stairs and you spend some time on each one sitting, watching the black water that's just a little bit nearer. Then little by little you have to go down the stairs and your feet get wet, then your legs, your body, your shoulders when finally your head is under and you're swept away. And all the time you know what's happening and you don't want it to happen but you're forced to participate and to descend even though every part of your brain tells you that you don't want to be there. And even if you're cyring and screaming and kicking, you have to go down.
Sometimes people are lucky enough to be able to go back up a step, maybe two or three, but they will always be somewhere on the staircase, where normal people don't have to go, looking at the water.
Sometimes it's just easier to dive straight into the water.
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