Nobody talks about the mental anguish of cancer and chemotherapy. Why is that? Does it mean you are weak if you announce your fears and anxiety, because people (they mean well) keep telling you "keep you chin up", "you can do this", "nearly there", "you are so strong/so brave". Well the past few days I have not felt brave, I do not want to keep my head up and although I am half way and number 7 is planned for today, all I want to do is throw myself on the floor and have a complete and utter breakdown. You know the type, the ones that 2 years olds do....Roxy mastered them down to a fine art! I really do not want number 7 today because I know that this time tomorrow I will be retching, crying and holding onto the toilet. My head will feel as though it might explode. I will be unable to touch anything cold, drink only room temperature liquid for 3/4 days in this heat, wont be able to sleep because of the nausea at night then want to sleep all day. I will struggle to walk. I know that I will not get ME back until at least 8/9 days later and even then it is a poor excuse for me! I want to cry all the time at the moment but I can't. I think right now that if I were to cry, really cry it would not stop. I feel full of tears, full of hurt from this disgusting illness and it's violently invasive treatment. It's invaded my life and I now know that cancer will be part of mine and my family's life forever. I can't accept that right now, it makes me angry. 6 more treatments then wait to see if chemo has got all the cancer, hope it hasn't travelled ...wait to see if I have to do this all over again. Then it's check ups every 3 months...to see if the bastard has stayed away...then 6 monthly...then then then...it goes on and on and on. There will always be a cancer umbrella over me. My girls will always know that there is a possibility that Mummy's cancer might return or it might not have gone...who knows. Nothing to do with positivity it's to do with being realistic. I am being positive and I do think that I'll get the best news in September but I'm also realistic in terms of how unpredictable cancer is. It hurts my heart knowing the littles have this bullshit in their lives. They make little comments like "when you are better Mummy we can do this or that", "next summer Mummy when you are better we can go to the beach, don't worry". Roxy told me the other day that it was ok to die and go to heaven if you are very very old because you have had a good long life... she then looked at me and gave me a hug. Not that they think I'm going to die, but they have their own thoughts and worries going through their little minds. How can a nearly 8 year old process this...why should a 12 year old have this fear when she is already going through her own changes. Growing up should be exciting not feeling fear that your Mummy has cancer. They are too young to have these worries and this makes me angry. How dare cancer come into our lives.
I am treading water on my own life right now. I am trying to keep my head above the waves of the cancer and chemotherapy. Nobody really wants to know the dark side of your mind, the fears you have...the sometimes morbid fears that you face going through this. So, I keep my brave face on and I'm strong for my little family. I keep my chin up and smile most days and find humour even in the dark days. I turn up for my treatments with my full dolly on smiling. I turn up for lunch on my few good days with my friends and I tell them, I'm fine, struggling on, I'll be ok. I don't want to open my flood gates as there is no return from that...right now I feel that I would drown in my own sorrow from all of this. Please don't get me wrong, it is not self pity it is just complete and utter exhaustion from the treatment and the hurt seeing my family going through this journey too.
So number 7 today and I was met with a "happy chemo day Mummy" cheer from Madison this morning. She makes me smile. So that is why, although I want to scream and shout and cry, I wont. If I am strong they feel secure, they see me smile they smile, if I cry they are scared and sad and I don't want that. So off I'll go with my lipgloss on again, see the lovely team at Juaneda and get it done...just get it done Amanda.
Wednesday, 10 June 2015
Thursday, 4 June 2015
LONLEY DAYS AND TRIPPING
So number 6 done and I'm half way. Feel shitty again on this one. Shitty is becoming the norm. The recovery days are becoming longer apart...and although I knew it was accumulative, the side effects, it's taken me by surprise at how unwell I feel at times. To be honest it's the sickness and complete exhaustion which is wearing thin with me. We are now on Thursday and treatment was last Wednesday and today's challenge is to actually leave the house. I have had a headache which I just can't shift this time and suffered with bad dizziness. I want my energy back. Especially when you have houseguests... my mum and stepfather were here from the UK and I do feel guilty for not getting up and doing much with them, although of course, I know nobody expects anything from me, but I still expect me to be able to do simple tasks, like going for a walk!!! It was good to have my Mum here (she left yesterday), the girls needed some extended family time and they always adore Nanna and Grampy time. Of course they get totally spoilt and rightly so, especially at the moment. Roxy proudly announced the other night that she had, since Friday (Mum's arrival) 9 ice creams!!!!! I might add though, that these are small scoops in a paper cup, so I'm not panicking too much...although she did then announce that she hadn't pooped either !!
Saturday was a write off for me. My mum and stepfather took the littles out shopping and lunch and I spent the day on the bed feeling horrific. The tears came again on Saturday. I just couldn't make myself feel better no matter what I tried. The heat is also not helping and it's only going to get hotter over the next few weeks. The chemo side effects are so overwhelming at times, they rage through your body with an anger. They are angrily attacking my body and I can feel each attack. Walking was not easy again because of the bloody neuropathy and the nausea was just vile. All in all Saturday was shit but I did manage to prepare a good evening meal for us and it was nice to have a houseful of family. Sunday I still feel rotten but I get myself together so we can enjoy a gorgeous family lunch in the sunshine next to the sea. It's nice to be out. A little wobbly on my old lady legs but I manage it. Of course, Monday is another write off because I spent too long out on the Sunday but it was worth it. Since the weekend all I have done really is sleep. Lots of sleeping. Such a lonely existence this illness. Don't get me wrong, I am SURROUNDED by so much love, I have the best family and friends supporting me, I am totally blessed, but I am lonely. It's hard to describe really. You spend so much time on your own because you are not fully up for going out and socialising whilst the rest of the world continues. life continues as it should, the littles get up and go to school, Chris goes to work...everything continues but me. Then there are the long nights when you can not sleep because of the anti sickness meds. What do you do in those long dark hours alone with your thoughts... well you surf the net, play Candy Crush and hope eventually that you go back to sleep. Nobody can really understand the confinement of cancer/chemotherapy until they have lived and breathed it. I'm not feeling sorry for myself, it's purely another observation and a fact of my life right now.
Another funny little side effect, although painful, is my lack of space awareness. The past few days I seem to be bumping into things. At the weekend I bent down in the kitchen to take something out of the cupboard and head butted the marble work surface, not sure who was more shocked, me or Scruffy as I shouted out WTF and then proceeded to tell myself off for being an idiot...and yesterday I walked fully into my bedroom doorframe and cracked my shoulder. Seriously, what is that all about then, like I need anymore side effects that can cause me harm, what with the wobbly old lady legs that give way at any given minute, cranky stiff old lady hands which drop things because of the neuropathy, chemo Dora brain which cause me to forget things in the oven, actually just forget everything AND now this...I should have a sign above my head saying "approach at your own risk"!! I feel like a 90 year old in a 44 year old's body!!
So, in true Coleman style, with the downs come the ups and funny bits. I thought long and hard about sharing this experience with you all and to be fair, I've been so honest about everything else (I refer to Johnny Fart Pants blog), so why not...
So, I had read somewhere that there is this 'special oil', you know the one thats featured in tabloid front pages, all over the alternative health Facebook pages...the oil that helps cancer patients...yes that oil!!! Well, I managed to find some here and was excited to try it and hoped it would make the side effects more tolerable. Obviously, it did not come with instructions or dosage but I thought to myself, it's natural and supposed to help so I took a healthy "drop" and thought nothing of it. This was at about 4pm. At 1030pm I said to Chris, "you know, I don't feel so good". He thought maybe it was the Indian take away that I had just demolished which was very unlike me as it was the first time in days that I had felt like eating and not throwing it up afterwards. I thought nothing of it as I rammed bread into my mouth telling him how great it was. I don't eat bread!! I felt really distant and heady. Tried to walk to my bedroom and it felt like such an effort. I was very warm and my head started to feel dizzy. I think I must have put myself into panic mode as my heart started to race and I was convinced that this was my time. OH MY GOD, this is it, I thought to myself, I am actually going to die in my bedroom. I mean you hear stories about people having a bad reaction to chemotherapy and I really thought that was it. It was the night before my biggest little's birthday beach picnic and her birthday was on the Sunday and all I could think was, fuck, I'm going to die on Madi's birthday weekend. The panic just overtook my body. I had an out of body experience and then I passed out on my bedroom floor. It was about 1130pm by now and as it was the weekend the au pair was not home, so poor Chris had to wake the littles so that we could go to the Emergency Room. He helps me to the front door as by now I am hardly able to walk, nothing is making sense in my head and I feel like I am drifting in and out of myself. I pass out again at the front door and a half asleep Roxy standing there in her pyjamas sees it. I can't even begin to imagine what was going through their little minds seeing Mummy like this. We manage to get in the car and to Clinica Juaneda where again, I slump on the floor in the admissions. This is my treatment clinic, so they have my notes on file there and I'm taken straight through. It's horrific, I feel horrific, I do not know why I am there, I feel confused and scared. I'm put in a room on a trolley bed in full view of other patients in the hallway. I start to throw up in the bin. My poor babies seeing their Mummy laying there...they don't cry now they just stare at me with their big wide eyes, trying to take it all in. Chris takes them to the waiting room so that I can have my blood tests and heart monitored. I remember laying there and feeling fear...absolute fear that I wasn't going to leave that room, fear that my girl's lasting memory would be of me on a hospital trolley in my PJ's and dying. The doctor talks with Chris and Chris informs her of the oil. We wait for an hour for the blood results to come back. I'm convinced by now that I am falling off of the hospital trolley bed and keep asking Chris to help me. I feel like I am drifting in and out of myself, it's a very surreal experience. The results of heart and bloods are all clear...really good in fact. The doctor comes and looks at me with a smile on her face and says in a very calm, reassuring voice "Amanda, you are just stoned, very stoned. You should feel better in a few hours"!!! She then tells me to speak to my doctor about having 'the oil' on a prescription so I know the correct dosage. We have to wait at reception for my notes to be printed off and they ask "so how you feeling now Mrs Coleman" with a smile. Seriously, I'm so embarrassed. I'll be forever known as the 44 year old mother of 2 with colon cancer that got well and truly stoned. Thankfully it was only that, obviously I can't wipe away that night from the little's memory but we will when they are older explain what really happened on that night to silly old Mummy. Really, you couldn't make this stuff up...this journey although painful is also providing us with some lasting memories that also make us smile alongside the tears. All I need to do now is stop Chris from calling me Cheech all the time.
If laughter is medicine and the cure to all....I have absolutely nothing to worry about!!
http://www.collective-evolution.com/2015/04/15/the-us-finally-admits-cannabis-kills-cancer-cells
Saturday was a write off for me. My mum and stepfather took the littles out shopping and lunch and I spent the day on the bed feeling horrific. The tears came again on Saturday. I just couldn't make myself feel better no matter what I tried. The heat is also not helping and it's only going to get hotter over the next few weeks. The chemo side effects are so overwhelming at times, they rage through your body with an anger. They are angrily attacking my body and I can feel each attack. Walking was not easy again because of the bloody neuropathy and the nausea was just vile. All in all Saturday was shit but I did manage to prepare a good evening meal for us and it was nice to have a houseful of family. Sunday I still feel rotten but I get myself together so we can enjoy a gorgeous family lunch in the sunshine next to the sea. It's nice to be out. A little wobbly on my old lady legs but I manage it. Of course, Monday is another write off because I spent too long out on the Sunday but it was worth it. Since the weekend all I have done really is sleep. Lots of sleeping. Such a lonely existence this illness. Don't get me wrong, I am SURROUNDED by so much love, I have the best family and friends supporting me, I am totally blessed, but I am lonely. It's hard to describe really. You spend so much time on your own because you are not fully up for going out and socialising whilst the rest of the world continues. life continues as it should, the littles get up and go to school, Chris goes to work...everything continues but me. Then there are the long nights when you can not sleep because of the anti sickness meds. What do you do in those long dark hours alone with your thoughts... well you surf the net, play Candy Crush and hope eventually that you go back to sleep. Nobody can really understand the confinement of cancer/chemotherapy until they have lived and breathed it. I'm not feeling sorry for myself, it's purely another observation and a fact of my life right now.
Another funny little side effect, although painful, is my lack of space awareness. The past few days I seem to be bumping into things. At the weekend I bent down in the kitchen to take something out of the cupboard and head butted the marble work surface, not sure who was more shocked, me or Scruffy as I shouted out WTF and then proceeded to tell myself off for being an idiot...and yesterday I walked fully into my bedroom doorframe and cracked my shoulder. Seriously, what is that all about then, like I need anymore side effects that can cause me harm, what with the wobbly old lady legs that give way at any given minute, cranky stiff old lady hands which drop things because of the neuropathy, chemo Dora brain which cause me to forget things in the oven, actually just forget everything AND now this...I should have a sign above my head saying "approach at your own risk"!! I feel like a 90 year old in a 44 year old's body!!
So, in true Coleman style, with the downs come the ups and funny bits. I thought long and hard about sharing this experience with you all and to be fair, I've been so honest about everything else (I refer to Johnny Fart Pants blog), so why not...
So, I had read somewhere that there is this 'special oil', you know the one thats featured in tabloid front pages, all over the alternative health Facebook pages...the oil that helps cancer patients...yes that oil!!! Well, I managed to find some here and was excited to try it and hoped it would make the side effects more tolerable. Obviously, it did not come with instructions or dosage but I thought to myself, it's natural and supposed to help so I took a healthy "drop" and thought nothing of it. This was at about 4pm. At 1030pm I said to Chris, "you know, I don't feel so good". He thought maybe it was the Indian take away that I had just demolished which was very unlike me as it was the first time in days that I had felt like eating and not throwing it up afterwards. I thought nothing of it as I rammed bread into my mouth telling him how great it was. I don't eat bread!! I felt really distant and heady. Tried to walk to my bedroom and it felt like such an effort. I was very warm and my head started to feel dizzy. I think I must have put myself into panic mode as my heart started to race and I was convinced that this was my time. OH MY GOD, this is it, I thought to myself, I am actually going to die in my bedroom. I mean you hear stories about people having a bad reaction to chemotherapy and I really thought that was it. It was the night before my biggest little's birthday beach picnic and her birthday was on the Sunday and all I could think was, fuck, I'm going to die on Madi's birthday weekend. The panic just overtook my body. I had an out of body experience and then I passed out on my bedroom floor. It was about 1130pm by now and as it was the weekend the au pair was not home, so poor Chris had to wake the littles so that we could go to the Emergency Room. He helps me to the front door as by now I am hardly able to walk, nothing is making sense in my head and I feel like I am drifting in and out of myself. I pass out again at the front door and a half asleep Roxy standing there in her pyjamas sees it. I can't even begin to imagine what was going through their little minds seeing Mummy like this. We manage to get in the car and to Clinica Juaneda where again, I slump on the floor in the admissions. This is my treatment clinic, so they have my notes on file there and I'm taken straight through. It's horrific, I feel horrific, I do not know why I am there, I feel confused and scared. I'm put in a room on a trolley bed in full view of other patients in the hallway. I start to throw up in the bin. My poor babies seeing their Mummy laying there...they don't cry now they just stare at me with their big wide eyes, trying to take it all in. Chris takes them to the waiting room so that I can have my blood tests and heart monitored. I remember laying there and feeling fear...absolute fear that I wasn't going to leave that room, fear that my girl's lasting memory would be of me on a hospital trolley in my PJ's and dying. The doctor talks with Chris and Chris informs her of the oil. We wait for an hour for the blood results to come back. I'm convinced by now that I am falling off of the hospital trolley bed and keep asking Chris to help me. I feel like I am drifting in and out of myself, it's a very surreal experience. The results of heart and bloods are all clear...really good in fact. The doctor comes and looks at me with a smile on her face and says in a very calm, reassuring voice "Amanda, you are just stoned, very stoned. You should feel better in a few hours"!!! She then tells me to speak to my doctor about having 'the oil' on a prescription so I know the correct dosage. We have to wait at reception for my notes to be printed off and they ask "so how you feeling now Mrs Coleman" with a smile. Seriously, I'm so embarrassed. I'll be forever known as the 44 year old mother of 2 with colon cancer that got well and truly stoned. Thankfully it was only that, obviously I can't wipe away that night from the little's memory but we will when they are older explain what really happened on that night to silly old Mummy. Really, you couldn't make this stuff up...this journey although painful is also providing us with some lasting memories that also make us smile alongside the tears. All I need to do now is stop Chris from calling me Cheech all the time.
If laughter is medicine and the cure to all....I have absolutely nothing to worry about!!
http://www.collective-evolution.com/2015/04/15/the-us-finally-admits-cannabis-kills-cancer-cells
Friday, 22 May 2015
NUMBER 5: HIGH HEELS AND BATHROOM CRAWLING
The Chinese hold 5 as a lucky number and it is associated with the five elements Water, Fire, Earth, Wood, and Metal. For me, number 5 is purely associated with two elements - Exhaustion and Nausea!!!
Well number 5...this has been the worst one yet and I have 7 more to go!!! The nausea has been horrific, never known anything like it. The violence of the dry retching can only be likened to a scene out of The Exorcist!!! Even the anti nausea tablets didn't really help this time round. Then the vomiting started...power eating my way through this round of chemo has not been an option. I want to eat all my healthy powerful foods but when I do, I feel terrible after 20 minutes of finishing and then have to rush to the bathroom. I have a constant metallic taste in my mouth, my head has hurt every day since the chemo (which is now 9 days ago) and I feel dizzy and exhausted. Strange things have also been happening with my legs...some days they just don't work as they should and I end up shuffling like a little old lady or they just give way completely. Great, wobbly legs to go with my little old lady hands!!!! I'm finding baths are my best friend (very similar to when I was pregnant and full of morning sickness with Madi) and being in water seems to soothe my body and helps with the nausea. Admittedly I end up staying in there for too long, have it way too hot, which in turn then zaps my energy and I struggle to get out of the damn thing....also doesn't help that my 10 kilo kitten insists on trying to share my baths and then lays on the bathmat which I then have to navigate stepping over on my way out because of course, fat cat doesn't move and often swipes at my ankles just to make the exit even more interesting !
Soooooo, I finally succumbed and had my hair cut to chin length, I like it, although I do prefer my lovely long hair but to be honest, it had gotten thin and ragged looking and now it looks way healthier than it did. Don't get me wrong, my hair like me, still struggles on a daily basis but it remains there and I respect it for staying with me along this ridiculous journey. I'm not sure how I made it to the salon last Saturday if I am honest. I woke up feeling HORRENDOUS, but I had to get there as Madi had been gifted 2 tickets to see Swan Lake at the Palma Auditorium for her birthday by my friend Lucy. Such a beautiful and thoughtful gift from her for my girl and I wanted to look great on Saturday night and feel 'normal' for a few hours. Madi was so excited, she had her outfit ready and we were going to have a Mummy/Madi night out. So the goal for Saturday was hairdressers for me, football/lunch for Chris and then home so I could sleep and feel well enough for the ballet. Roxy was out all day at her friend's house with a trip to Pirates and a sleep over - so she was covered (thank you Debbie). We managed it all. I felt terrible the whole day, but went to bed thinking a sleep will make it all better. I didn't even need the alarm that I had set for myself. It was if the nausea truck had driven straight into me - BOOOOOOOM there you go, have another round of this. You have plans to go out with your daughter HAHAHAHA, we don't think so...Chris finds me on my hands and knees in a dark bathroom over the toilet, holding onto it, sobbing into it, throwing up uncontrollably. I feel like a cancer patient for the very first time. My body is raging with pain and sickness. My legs hurt, my head hurts, my stomach is on fire from the retching. Thankfully only Chris sees me as Madi is happily oblivious in her bedroom getting ready for her big night out. Chris says lovingly that he will take her. I angrily tell him that I will do this, I am not angry at him, I'm angry at the mess that I am in. He gets me water and tells me I have 45 minutes to get myself ready and that he will take Madi out for a walk and meet me downstairs.
Never underestimate the power of a mother's love, make-up & lots of hairspray! Somehow I manage to scrape myself off the bathroom floor and into a little black dress and killer heels . I meet them downstairs and Madi tells me how wonderful I look, she is non the wiser and off we go to make a beautiful memory together. It was truly a stunning performance from the Moscow Ballet Company. We sit and hold hands all the way through it, she munches on the sweets we bought, whilst I secretly do deep breathing to stop myself from being sick.
So the week pretty much repeats itself like that...exhaustion, nausea, vomit, repeat. Tomorrow is the birthday girl's big beach party and I've made the goodie bags, the games are planned and my gorgeous au pair has sat and made/decorated 50 cupcakes for her. All I need now is for my body to behave and to function normally for a few hours. Not too much to ask.
So Wednesday is round 6. Which is half way. Half way to being better. Half way to getting ME back, wife back, Mummy back. Half way is good, although if number 5 is an indicator of how tough it's going to get then I 'd better get myself some bigger Big Girl Pants!!!!!!!
Well number 5...this has been the worst one yet and I have 7 more to go!!! The nausea has been horrific, never known anything like it. The violence of the dry retching can only be likened to a scene out of The Exorcist!!! Even the anti nausea tablets didn't really help this time round. Then the vomiting started...power eating my way through this round of chemo has not been an option. I want to eat all my healthy powerful foods but when I do, I feel terrible after 20 minutes of finishing and then have to rush to the bathroom. I have a constant metallic taste in my mouth, my head has hurt every day since the chemo (which is now 9 days ago) and I feel dizzy and exhausted. Strange things have also been happening with my legs...some days they just don't work as they should and I end up shuffling like a little old lady or they just give way completely. Great, wobbly legs to go with my little old lady hands!!!! I'm finding baths are my best friend (very similar to when I was pregnant and full of morning sickness with Madi) and being in water seems to soothe my body and helps with the nausea. Admittedly I end up staying in there for too long, have it way too hot, which in turn then zaps my energy and I struggle to get out of the damn thing....also doesn't help that my 10 kilo kitten insists on trying to share my baths and then lays on the bathmat which I then have to navigate stepping over on my way out because of course, fat cat doesn't move and often swipes at my ankles just to make the exit even more interesting !
Soooooo, I finally succumbed and had my hair cut to chin length, I like it, although I do prefer my lovely long hair but to be honest, it had gotten thin and ragged looking and now it looks way healthier than it did. Don't get me wrong, my hair like me, still struggles on a daily basis but it remains there and I respect it for staying with me along this ridiculous journey. I'm not sure how I made it to the salon last Saturday if I am honest. I woke up feeling HORRENDOUS, but I had to get there as Madi had been gifted 2 tickets to see Swan Lake at the Palma Auditorium for her birthday by my friend Lucy. Such a beautiful and thoughtful gift from her for my girl and I wanted to look great on Saturday night and feel 'normal' for a few hours. Madi was so excited, she had her outfit ready and we were going to have a Mummy/Madi night out. So the goal for Saturday was hairdressers for me, football/lunch for Chris and then home so I could sleep and feel well enough for the ballet. Roxy was out all day at her friend's house with a trip to Pirates and a sleep over - so she was covered (thank you Debbie). We managed it all. I felt terrible the whole day, but went to bed thinking a sleep will make it all better. I didn't even need the alarm that I had set for myself. It was if the nausea truck had driven straight into me - BOOOOOOOM there you go, have another round of this. You have plans to go out with your daughter HAHAHAHA, we don't think so...Chris finds me on my hands and knees in a dark bathroom over the toilet, holding onto it, sobbing into it, throwing up uncontrollably. I feel like a cancer patient for the very first time. My body is raging with pain and sickness. My legs hurt, my head hurts, my stomach is on fire from the retching. Thankfully only Chris sees me as Madi is happily oblivious in her bedroom getting ready for her big night out. Chris says lovingly that he will take her. I angrily tell him that I will do this, I am not angry at him, I'm angry at the mess that I am in. He gets me water and tells me I have 45 minutes to get myself ready and that he will take Madi out for a walk and meet me downstairs.
Never underestimate the power of a mother's love, make-up & lots of hairspray! Somehow I manage to scrape myself off the bathroom floor and into a little black dress and killer heels . I meet them downstairs and Madi tells me how wonderful I look, she is non the wiser and off we go to make a beautiful memory together. It was truly a stunning performance from the Moscow Ballet Company. We sit and hold hands all the way through it, she munches on the sweets we bought, whilst I secretly do deep breathing to stop myself from being sick.
So the week pretty much repeats itself like that...exhaustion, nausea, vomit, repeat. Tomorrow is the birthday girl's big beach party and I've made the goodie bags, the games are planned and my gorgeous au pair has sat and made/decorated 50 cupcakes for her. All I need now is for my body to behave and to function normally for a few hours. Not too much to ask.
So Wednesday is round 6. Which is half way. Half way to being better. Half way to getting ME back, wife back, Mummy back. Half way is good, although if number 5 is an indicator of how tough it's going to get then I 'd better get myself some bigger Big Girl Pants!!!!!!!
Thursday, 14 May 2015
INTERLUDE: THE SMALLEST ONE - THE CONVERSATION I DIDN'T PLAN FOR!!
So Roxy and I were in our favourite position tonight, the same position we have been in for the past 7 years of her life...her firmly attached to me. The location of this attachment doesn't really matter, if I am there, she will be firmly attached to me. She is getting better but for years she has been a terribly shy little girl and needs her Mummy at least in view, but preferably with one part of her anatomy glued to me. Roxy was born totally deaf...well she had 10% hearing in one ear we were told and we only found this out when she had started school and was just 3.5 years and suffered with awful bronchitis and then she progressed to pneumonia with hospital stays. Anyway, when we eventually found out she was deaf, they operated and thankful we are at 90% hearing now and with very occasional chest infections. We think a lot of her shyness came from the early years of not being able to hear, but she has transformed from this shy little girl to an outgoing, deeply humorous (very black humour I might add) and a truly loving little girl. She knows that I have been in hospital and she knows that Mummy had an operation and was poorly and she thinks that my chemo port on my chest is my magic button. She understands that I go in every 2 weeks and will ask "oh is it your bag day today?" We never told her the word cancer, mainly because we thought at 7 she just wouldn't understand or be able to process it all.
Tonight that all changed. So we are in our favourite position, attached to each other on the sofa, and out of the blue, she turns to me and asks "Mummy, why did you suddenly go into hospital and stay there for a few days", "well baby, you know Mummy had to have an operation to remove a lump in my tummy", "what sort of lump was it", a tumour I tell her. She does not understand what a tumour is, so I tell her it is lump that grew inside my tubes where all the food is processed and that lump grew badly and had to come out, along with some of the tube (intestines). She looks at me and I can see she is really thinking...I was not expecting this and feel a little panicked if I am honest. "Ok, so the bad lump came out and why do you have the medicine going into your magic button, what is it?" I bite the bullet. She will be 8 in September and not the baby I still hold the image of in my head - ok, she will always be my baby but she is growing up and has her own thoughts, feelings and opinions. Well the medicine is called chemotherapy and they give it to people who have something called cancer. She interrupts me "oh, but Mummy, people, well people with ....". She doesn't finish her sentence, so I ask her what she wants to say to me, she replies "people die from cancer...are you going to die Mummy?" She buries her head into my chest and clings on to me. No tears from her, I fight back my tears. How does my little girl know about cancer and what it can mean??? I can only be honest from here, so I tell her that yes, some people do die from cancer but a lot of people get better and I had very very big plans on getting better. She doesn't talk anymore, she just holds onto me. I put her to bed and we lay together not speaking. She holds my face a lot and just looks at me with those big brown eyes of her...we've always had this kind of connection Roxy and I. We look at each other, she takes her mummy bunny (her sleep comfort that she has had from birth) and wipes it on my neck so she can smell me when she sleeps. I tell her that she must speak to me about any worries or any questions that she might have. She reassures me she will and then closes her eyes.
It has been a pretty tough 48 hours in our house with the littles and conversations. Number 5 chemo is also being pretty tough on me too. We will get through it, I have no doubt about that. I can't help but worry about my littles, we all worry about our littles even during 'normal' times. For the first time, I had a little panic feeling in my stomach tonight...what if (there is the bloody what ifs again)...what if ...!!!
Tonight that all changed. So we are in our favourite position, attached to each other on the sofa, and out of the blue, she turns to me and asks "Mummy, why did you suddenly go into hospital and stay there for a few days", "well baby, you know Mummy had to have an operation to remove a lump in my tummy", "what sort of lump was it", a tumour I tell her. She does not understand what a tumour is, so I tell her it is lump that grew inside my tubes where all the food is processed and that lump grew badly and had to come out, along with some of the tube (intestines). She looks at me and I can see she is really thinking...I was not expecting this and feel a little panicked if I am honest. "Ok, so the bad lump came out and why do you have the medicine going into your magic button, what is it?" I bite the bullet. She will be 8 in September and not the baby I still hold the image of in my head - ok, she will always be my baby but she is growing up and has her own thoughts, feelings and opinions. Well the medicine is called chemotherapy and they give it to people who have something called cancer. She interrupts me "oh, but Mummy, people, well people with ....". She doesn't finish her sentence, so I ask her what she wants to say to me, she replies "people die from cancer...are you going to die Mummy?" She buries her head into my chest and clings on to me. No tears from her, I fight back my tears. How does my little girl know about cancer and what it can mean??? I can only be honest from here, so I tell her that yes, some people do die from cancer but a lot of people get better and I had very very big plans on getting better. She doesn't talk anymore, she just holds onto me. I put her to bed and we lay together not speaking. She holds my face a lot and just looks at me with those big brown eyes of her...we've always had this kind of connection Roxy and I. We look at each other, she takes her mummy bunny (her sleep comfort that she has had from birth) and wipes it on my neck so she can smell me when she sleeps. I tell her that she must speak to me about any worries or any questions that she might have. She reassures me she will and then closes her eyes.
It has been a pretty tough 48 hours in our house with the littles and conversations. Number 5 chemo is also being pretty tough on me too. We will get through it, I have no doubt about that. I can't help but worry about my littles, we all worry about our littles even during 'normal' times. For the first time, I had a little panic feeling in my stomach tonight...what if (there is the bloody what ifs again)...what if ...!!!
Wednesday, 13 May 2015
MY BIG LITTLE GIRL
So number 5 chemo was very important to me. You see it's my big little girl's birthday on 24th May - Madison will be 12. I have to plan everything around my chemo sessions, so because we thought number 5 would have been last week, we planned for her birthday party to be this coming Saturday ... of course, that all went tits up when last weeks chemo was cancelled due to low platelets, so we moved it forward to Saturday 23rd May and just kept our fingers crossed that the chemo went ahead today so that next week I'll feel good again for her beach picnic. So I am VERY thankful to be sat here in oncology attached to the usual two bags with the beeping machine.
Madi is a special little being. She is truly beautiful inside and out. Life didn't start too beautiful for her, she was just over two weeks late, induced and they had to use forceps and ventouse to remove her from her safe little cave, she obviously just felt very comfortable there and was in no rush to leave!! She was a funny looking baby, ok a forced delivery didn't help matters and she sported a cone shaped head for a while, along with forcep marks and being extremely long in length with no hair, she really was a bizarre looking baby. Chris said she looked like a golf club as her feet were enormous at the end of her never ending legs! I made her wear hats for the first 12 months as there was little sign of hair and she only got her first tooth at nearly 8 months old! She was and still is an easy child. She was a very happy contented baby and showing a strong creative mind from a very young age... I would often find her with strange bags & buckets on her head, this progressed to fully designed outfits with accompanying floor show (much to the delight of many of our au pairs) to her unique taste in clothes now. She is effortlessly stylish and in my humble opinion, just stunning to watch and look at. She is kind & caring and has an amazing empathy about her.
Our relationship is being tested right now. She is going through the usual changes that most nearly 12 year olds go through and on top of that her Mummy has cancer. We have the usual ups/downs/moods that accompany most pre-teenies, we chat when she allows me about body changes and how she is turning into a young woman...these conversations are often quickly changed and we go back to talking about ballet and school. We do not talk about my cancer. I have tried to talk to her about it, but she just changes the subject or gives me an awkward look. She was angry and hurt when Chris and I sat her down, told her I had it and would be having chemotherapy. I could see her safe world was momentarily destroyed. She cried so hard, that I felt my heart hurting on that night. We had another heart hurting moment last night. You see Madi hasn't told any of her friends or anyone that her Mum has cancer, this is completely her right and although we have tried to talk to her about this, the response is always the same "I don't know, I just don't want to". So occasionally, I bump into her friends parents or as in last night's case, a grandfather and we talk and it comes out that I am having chemo and I tell them why. I could see he was shocked and didn't really know what to say, this I am ok with, it's a normal reaction. I told Madi I had told him and she looked at me as though she was a bit pissed off. I ask her again, why did she not tell anyone...is she embarrassed? I want to understand how my big little girl is feeling, what is going on in her head, why wont she speak to me...to anyone! We exchange some words and both end up in floods of tears...big tears, she is sobbing, I feel awful that I have made her cry, we hold each other very tightly and I say sorry to her. I am so sorry that we are in this revolting situation, that cancer has dared to come into our family. I want her to open up to me, but I can't force this can I? I have to accept and respect that this is her way of dealing with it but I can't help but feel like I'm knocking on her door but she wont answer me, she won't let her Mummy in and this makes me so sad...I do not want her to feel alone in this journey, because we are all on this journey together, all four of us.
So in the meantime, we plan for next Saturday, we will celebrate our gorgeous girl's 12th birthday on a sunny beach here in Mallorca with all of her friends and their parents and hopefully next Saturday I'll be fully in the 'good' cycle and can at least be a normal mum on her special day and as the Urban Dictionary quite rightly quotes:
Madison ~ An amazing, beautiful, intelligent and simply perfect girl. Madisons are perfect friends. Madisons are great dancers, and can do anything they set their mind to. Madisons will do anything for their friends and will always be there for them no matter what. They are perfect in every way.
Madi is a special little being. She is truly beautiful inside and out. Life didn't start too beautiful for her, she was just over two weeks late, induced and they had to use forceps and ventouse to remove her from her safe little cave, she obviously just felt very comfortable there and was in no rush to leave!! She was a funny looking baby, ok a forced delivery didn't help matters and she sported a cone shaped head for a while, along with forcep marks and being extremely long in length with no hair, she really was a bizarre looking baby. Chris said she looked like a golf club as her feet were enormous at the end of her never ending legs! I made her wear hats for the first 12 months as there was little sign of hair and she only got her first tooth at nearly 8 months old! She was and still is an easy child. She was a very happy contented baby and showing a strong creative mind from a very young age... I would often find her with strange bags & buckets on her head, this progressed to fully designed outfits with accompanying floor show (much to the delight of many of our au pairs) to her unique taste in clothes now. She is effortlessly stylish and in my humble opinion, just stunning to watch and look at. She is kind & caring and has an amazing empathy about her.
Our relationship is being tested right now. She is going through the usual changes that most nearly 12 year olds go through and on top of that her Mummy has cancer. We have the usual ups/downs/moods that accompany most pre-teenies, we chat when she allows me about body changes and how she is turning into a young woman...these conversations are often quickly changed and we go back to talking about ballet and school. We do not talk about my cancer. I have tried to talk to her about it, but she just changes the subject or gives me an awkward look. She was angry and hurt when Chris and I sat her down, told her I had it and would be having chemotherapy. I could see her safe world was momentarily destroyed. She cried so hard, that I felt my heart hurting on that night. We had another heart hurting moment last night. You see Madi hasn't told any of her friends or anyone that her Mum has cancer, this is completely her right and although we have tried to talk to her about this, the response is always the same "I don't know, I just don't want to". So occasionally, I bump into her friends parents or as in last night's case, a grandfather and we talk and it comes out that I am having chemo and I tell them why. I could see he was shocked and didn't really know what to say, this I am ok with, it's a normal reaction. I told Madi I had told him and she looked at me as though she was a bit pissed off. I ask her again, why did she not tell anyone...is she embarrassed? I want to understand how my big little girl is feeling, what is going on in her head, why wont she speak to me...to anyone! We exchange some words and both end up in floods of tears...big tears, she is sobbing, I feel awful that I have made her cry, we hold each other very tightly and I say sorry to her. I am so sorry that we are in this revolting situation, that cancer has dared to come into our family. I want her to open up to me, but I can't force this can I? I have to accept and respect that this is her way of dealing with it but I can't help but feel like I'm knocking on her door but she wont answer me, she won't let her Mummy in and this makes me so sad...I do not want her to feel alone in this journey, because we are all on this journey together, all four of us.
So in the meantime, we plan for next Saturday, we will celebrate our gorgeous girl's 12th birthday on a sunny beach here in Mallorca with all of her friends and their parents and hopefully next Saturday I'll be fully in the 'good' cycle and can at least be a normal mum on her special day and as the Urban Dictionary quite rightly quotes:
Madison ~ An amazing, beautiful, intelligent and simply perfect girl. Madisons are perfect friends. Madisons are great dancers, and can do anything they set their mind to. Madisons will do anything for their friends and will always be there for them no matter what. They are perfect in every way.
I am so very proud to be your Mummy
Wednesday, 6 May 2015
INTERLUDE: THE HEIGHT OF FRUSTRATION
AAAAAAARRRRRRRRGGGGGGHHHHHHHH so no bloody chemo session number 5 for me today as my white blood cells are unbelievably low. I kind of knew this going in there today as I had been feeling so exhausted the past week or so. Uff. I now have to wait until next Wednesday. This is not acceptable. I have to plan my life, my family's life around this ridiculous illness anyway and it is Madion's birthday coming up and I had to bring it a week forward as it was and now the whole time plan is out of sync. I am so angry. I had a complete Verruca Salt moment at the oncology department this afternoon, eyes filled with angry tears after they told me and had to physically stop myself from stamping my feet in frustration!!!!! Is it not enough that I have to endure this shitty cancer and the treatment that goes with it. I do it without complaining and with grace most of the time, the least it can do is respect me and my family.
There is not much I can do for a low white blood count. I have to wait. Normal range is between 150-450 and mine at round 4 (2 weeks ago) was 108 and today it is 74. According to Google, when you have a low white blood count you must not do any dangerous full contact sport, so no cage fighting for me this week - although I feel as though I could go head to head with myself right now - I feel disappointed, angry and frustrated with myself, although I know it is the one thing I have no control over and that frustrates the hell out of me.
OK rant over. Come on you Whites, we need a back of the net moment next week !!!!!
Monday, 4 May 2015
ROUND 4: PRAWNS, TEARS & DORA BRAIN
Round 4 went very well, surprisingly well. I had minimal side effects apart from the bloody neuropathy and tiredness, both of which are rocketing to a new level. I seem to have no control of my hands, they do as they please on treatment days and a couple of days after. I was talking to Madi and she said "Oh Mummy look at your hands" and we both stood there and stared at how my thumb had somehow managed to get stuck over the index finger and the ring finger was over the top of my pinky and I hadn't felt a thing!! I'll be typing and all of a sudden they will just stop working and freeze into the most bizarre positions and I have to gently knock them on the table to try and get them back into a normal position, same will happen when I have a knife in my hand much to the alarm of my family... my husband often shouts out "I'll cut that"! much to the relief of the littles. I've dropped/smashed glasses, things slip from my fingers and generally it is hit and miss on them functioning properly around this time. The same for my toes, they have started acting strange, along with my calf muscles that give up at the most inopportune moment, ...like getting up to go to the toilet in the night - I end up shuffling like an old lady to the bathroom and these spasms hurt at times, BUT apart from that and the incredible tiredness, it has been ok ish.
Another interesting side effect is the chemo brain. Now the majority of chemotherapy patients will understand what this is. Basically you forget everything. You have the attention span of Dora from Finding Nemo and the inability to do anything in a logical order. For example a day last week: I started to clear the kitchen, got distracted and went to talk to Roxy in her bedroom - the au pair then found a tea strainer and spoon on Roxy's shelf. I then decided that I would clear out Roxy's wardrobe of her old clothes and sell on my chocolate crocodile facebook page - piled up the clothes on my bedroom floor - decided to go make lunch - got distracted by phone call - forgot lunch - went back to pile of clothes to take photos and upload onto FB - shit LUNCH, rush back and finish that in time for the littles to get home from school - stood in kitchen and couldn't remember what I was doing in their first thing, AH YES clearing the dishwasher. This cycle continues on a daily basis. I forget words, everyday words and replace them with quite random words MUCH to the amusement of my children. I find myself now stopping mid sentence and struggling to find the right word to use which is annoying the hell out of me. I've developed a slight stutter in these situations whilst I am frantically searching my cloudy brain for the word. I've even gone to Mercadona with Madison and stood there and asked her why I'm there! Sooooo, it should come as no surprise then that I managed to give Chris and I food poisoning on the Sunday night. Gorgeous salad with prawns, I proudly announce to him. Did I notice that the prawns required cooking, no of course not, logic in my brain did not realise that because of their slight grey opaque appearance that I should have cooked them before use. As I was eating it, I thought to myself, these prawns taste different... OMG Chris they are raw!!!!!! Panic sets in, I can't get food poisoning, my reduced colon can't cope with this, nor can my decreased platelets (yes blood platelets are down this time round). So I prepare myself for the worst. Chris on the other hand seems not too bothered by this. To be honest, that guy does have the constitution of an ox, he can eat things which would send most of us on a bathroom holiday for days! Prawns are full of bacteria and it can take 2/3 days before you feel the full effects of the poisoning but within 2 hours I am firmly in the bathroom, a few more trips in the night and by Monday morning I am feeling OKish. Chris has full blown food poisoning by Monday, poor guy both ends. He suffers for a couple of days. He groans at me that he knows now how I feel after my treatments...not a bad thing to experience it for a couple of days I guess (sniggers slightly like a wicked witch). I'm sure the only reason I got away so lightly is because I am so full of poison myself that the prawn bacteria had no chance...a bit like the mosquito that feasted on me the other night...didn't hear that f*&ker buzzing again!!! Maybe I can rent myself out as a mosquito repellent this summer.
So I manage lots of lovely things on this cycle and we have things to celebrate. My warrior child Madi got a distinction in her ballet exam even though she had full blown flu and a raging temperature and Roxy got a distinction in her exam and came joint top of her class. Super proud Mummy moment. I attend a great workshop about juicing, I meet friends for coffees, birthday lunches, shopping, lots of valuable family time, have Madi's friend stay over and even manage to help a friend move some things into her new house. I am surrounded by the most amazing people who are doing fantastic things for me. I feel very loved and looked after. So why the tears? So many tears this time. So emotional. I find myself crying in the strangest situations, for example, walking to Santa Catalina to meet my friend to go to the juicing workshop last week. OK admittedly I'd had a bad night of being up feeling sick and struggling to sleep but I was so looking forward to meeting up with some girlies and going, but on the walk over there (20 minutes from my house) I find myself suddenly welling up and a face full of hot tears?????? This happens all week. I feel completely overwhelmed with these waves of sadness. I was in Corte Ingles shopping and to be honest, I had probably over done it and been out of the house for too long, the tiredness hit me, I suddenly panicked as to how I would get home and home is only a 15 minute walk. Again the tears, but this time I know they were out of frustration at the ridiculousness of all of this and the loss of my energy. I somehow make it home but completely wiped out. I cry at home when I look at the girls. I picked up Roxy to give her a big Mummy hug and we snuggle into each others necks and as I smell her, I can feel those bloody hot tears again...I can't stop them. I have a moment with Chris this weekend (girls were in bed), we talk about what if the Trevor comes back, what if I get the all clear in September but then it comes back. What if, WHAT IF WHAT IF WHAT IF - I hate the what ifs. I am positive and I know that I'm beating this but you can't help occasionally with the what ifs because non of us know what the future has in store for us, I guess it's how we deal with these what ifs that makes the difference.
So, number 5 this week. I am as always ready for it. Not wanting it but ready for it. Nearing the half way mark which will require some sort of celebratory moment I feel. Well the half way mark falls on Madison's 12th birthday week. Two fantastic reasons to celebrate. So in the meantime, I shall....
Another interesting side effect is the chemo brain. Now the majority of chemotherapy patients will understand what this is. Basically you forget everything. You have the attention span of Dora from Finding Nemo and the inability to do anything in a logical order. For example a day last week: I started to clear the kitchen, got distracted and went to talk to Roxy in her bedroom - the au pair then found a tea strainer and spoon on Roxy's shelf. I then decided that I would clear out Roxy's wardrobe of her old clothes and sell on my chocolate crocodile facebook page - piled up the clothes on my bedroom floor - decided to go make lunch - got distracted by phone call - forgot lunch - went back to pile of clothes to take photos and upload onto FB - shit LUNCH, rush back and finish that in time for the littles to get home from school - stood in kitchen and couldn't remember what I was doing in their first thing, AH YES clearing the dishwasher. This cycle continues on a daily basis. I forget words, everyday words and replace them with quite random words MUCH to the amusement of my children. I find myself now stopping mid sentence and struggling to find the right word to use which is annoying the hell out of me. I've developed a slight stutter in these situations whilst I am frantically searching my cloudy brain for the word. I've even gone to Mercadona with Madison and stood there and asked her why I'm there! Sooooo, it should come as no surprise then that I managed to give Chris and I food poisoning on the Sunday night. Gorgeous salad with prawns, I proudly announce to him. Did I notice that the prawns required cooking, no of course not, logic in my brain did not realise that because of their slight grey opaque appearance that I should have cooked them before use. As I was eating it, I thought to myself, these prawns taste different... OMG Chris they are raw!!!!!! Panic sets in, I can't get food poisoning, my reduced colon can't cope with this, nor can my decreased platelets (yes blood platelets are down this time round). So I prepare myself for the worst. Chris on the other hand seems not too bothered by this. To be honest, that guy does have the constitution of an ox, he can eat things which would send most of us on a bathroom holiday for days! Prawns are full of bacteria and it can take 2/3 days before you feel the full effects of the poisoning but within 2 hours I am firmly in the bathroom, a few more trips in the night and by Monday morning I am feeling OKish. Chris has full blown food poisoning by Monday, poor guy both ends. He suffers for a couple of days. He groans at me that he knows now how I feel after my treatments...not a bad thing to experience it for a couple of days I guess (sniggers slightly like a wicked witch). I'm sure the only reason I got away so lightly is because I am so full of poison myself that the prawn bacteria had no chance...a bit like the mosquito that feasted on me the other night...didn't hear that f*&ker buzzing again!!! Maybe I can rent myself out as a mosquito repellent this summer.
So I manage lots of lovely things on this cycle and we have things to celebrate. My warrior child Madi got a distinction in her ballet exam even though she had full blown flu and a raging temperature and Roxy got a distinction in her exam and came joint top of her class. Super proud Mummy moment. I attend a great workshop about juicing, I meet friends for coffees, birthday lunches, shopping, lots of valuable family time, have Madi's friend stay over and even manage to help a friend move some things into her new house. I am surrounded by the most amazing people who are doing fantastic things for me. I feel very loved and looked after. So why the tears? So many tears this time. So emotional. I find myself crying in the strangest situations, for example, walking to Santa Catalina to meet my friend to go to the juicing workshop last week. OK admittedly I'd had a bad night of being up feeling sick and struggling to sleep but I was so looking forward to meeting up with some girlies and going, but on the walk over there (20 minutes from my house) I find myself suddenly welling up and a face full of hot tears?????? This happens all week. I feel completely overwhelmed with these waves of sadness. I was in Corte Ingles shopping and to be honest, I had probably over done it and been out of the house for too long, the tiredness hit me, I suddenly panicked as to how I would get home and home is only a 15 minute walk. Again the tears, but this time I know they were out of frustration at the ridiculousness of all of this and the loss of my energy. I somehow make it home but completely wiped out. I cry at home when I look at the girls. I picked up Roxy to give her a big Mummy hug and we snuggle into each others necks and as I smell her, I can feel those bloody hot tears again...I can't stop them. I have a moment with Chris this weekend (girls were in bed), we talk about what if the Trevor comes back, what if I get the all clear in September but then it comes back. What if, WHAT IF WHAT IF WHAT IF - I hate the what ifs. I am positive and I know that I'm beating this but you can't help occasionally with the what ifs because non of us know what the future has in store for us, I guess it's how we deal with these what ifs that makes the difference.
So, number 5 this week. I am as always ready for it. Not wanting it but ready for it. Nearing the half way mark which will require some sort of celebratory moment I feel. Well the half way mark falls on Madison's 12th birthday week. Two fantastic reasons to celebrate. So in the meantime, I shall....
Subscribe to:
Posts (Atom)