It's been a very difficult few days. It turns out that what the hospital doctor thought was fluid retention in the wound was actually a really nasty infection brewing. By yesterday, everywhere on my right hand side between my waist and my face was swollen back and front, and I was unable to put my hand down by my side. The pain has been indescribable. Last night I went to see my GP as an emergency, and he immediately put me on high doses of antibiotics, as well as prescribing yet more heavy-duty painkillers.
This morning, despite all the new medication, I was even worse. By lunchtime I was shaky and shivery, and unable to talk properly. My lovely Dad came home and took control - he rang the GP's surgery and assertively insisted on talking to a doctor - who told him to call the hospital, which he did, and was equally assertive. WM dropped everything all over again to take me straight up there - and the same doctor I saw on Tuesday was there, and this time he tried to drain the wound. All very frightening, emotional and painful, with scary-looking equipment including a thick needle, tubing and a bottle, but not much came out.
I came home, feeling worse than ever, and went straight back to bed. I've hardly left my bed over the past couple of days. I slept until nearly 10pm, and got up, and just felt significantly better. Not right, and still very ill and in quite considerable pain that even the most heavy-duty of analgesia are barely touching, but better, and I think finally the antibiotics have kicked in and I've turned the corner.
In 5 days time I'm back at the hospital, where I'll get the results of all the histology reports following my surgery, and for the first time since diagnosis we should all have a much clearer picture of exactly how bad this cancer has got, and what plans they have to banish or diminish it. It's all quite daunting, and it would have been really helpful if I could have had a few days of relative strength and wellness to enable me to get my head in the right place to cope with the next onslaught of news and treatment. You can only play with the deck of cards you've been given, though, so I'll have to find a way of getting my fighting spirit back on track regardless.
During those surreal weeks between diagnosis and surgery, I read everything I possibly could about cancer, it's causes, and it's cures. The more I read, the more convincing the evidence became that there is so much I can do for myself to regain my health. Everyone has cancer cells, but some people develop it while others don't, and with positive changes in lifestyle, those of us with cancer can significantly increase the odds in favour or our own survival. In the weeks before the operation, I had made huge changes to my diet, but since the surgery, I have been so ill that I've reverted to "a little of what you fancy does you good" and have been comfort eating like crazy. Today that stops, and I'm back to the "anti-cancer" diet. Those of you who know me well will know that exercise is not something I enjoy or am good at, but regular exercise can also up the odds. Then there is adopting a calm attitude, meditation, proper sleep and rest, stress avoidance, and remaining hopeful - all things that just are not me at all, but somehow I've got to embrace them, at least for the next few months while this cancer has the audacity to threaten my life.
On Wednesday of next week I'll get to find out how much of a threat it actually is. By then, I need to be strong, determined and resolute. I also need to have started moving in the right direction of the "anti-cancer lifestyle" and take control over this wretched thing. There is masses I can do to improve my chances of being in that long tail of the graph that represents the cancer survivors, and never giving up hope is the most powerful tool there is. My aunt is now 84. In 1981 she had cancer, and two years later it returned with a vengeance. In those days there was no treatment available for the seriousness of her condition, and she was given 6 months to live. 29 years later, she is living a full and very active life, still driving, still fiercely intelligent and quick, still loving every minute of her "borrowed time". I've always thought the world of her, but now, she is my role model too.
I'm really cross that this infection has robbed me of a precious few days of what would otherwise have seen me well, strong and happy before facing up to next week's news. There's absolutely no reason why I can't still be happy over the next few days, and concentrating on mental strength and well-being even if physically I'm not as great as I'd like to be. I've just got to focus and get my head around it all, and with the terrible pain subsiding by the hour, once I set my mind to it, it should be a walk in the park.
Thank you for visiting my blog. This was supposed to be about Breast cancer, and later, my stage 4 breast cancer, but then it became about much more. Healthcare in general, the challenges of parenting disabled children, and also documented the writing of my book, The Special Parent's Handbook. Hopefully you'll find something here that will resonate in some way with you, and if you'd like to read more, particuarly about special needs parenting, please visit my website http://yvonnenewbold.com/
Saturday, 30 June 2012
Wednesday, 27 June 2012
A learning curve day
Today has been a really rubbish day, both healthwise and emotionally, but with a few nice moments too.
Last night, things suddenly got very painful, and overnight the pain just got worse and worse to the point where I got virtually no sleep. By this morning I was worried, and in fairly severe pain, as well as exhausted beyond words. So, I know the drill; I'm supposed to ring the hospital and ask their advice. Could I do it? No. So I procrastinated and procrastinated, and worked myself up into a real emotional mess, and tried to self-diagnose and sort it out myself. The pain was so bad I couldn't tell which area it was coming from, it sort of starts in the right elbow, agony up to the shoulder, back and front of neck, and across both boobs. So bad it felt like my bones were hurting too. So I started by pulling off the dressings. Imagine clingfilm with superglue, across very bruised, wounded areas, with a load of blood-stained guaze that had stuck solid to the bits that hurt the most. I know enough about hospitals to know that I really didn't want to submit to anyone else ripping them off, thank you very much, but it was an act of bravery heavily tempered with stupidity to do it myself. And yes, it flipping well hurt loads too.
It was a bit a of shock seeing my now naked boobs in the mirror - they are so swollen that if I started a porn career today I'd give Jordan a run for her money, and I'd probably make a fair bit for myself too. They are, quick frankly, enormous, but the photographer would have to use very arty lighting and shoot in sophisticated black and white to disguise the rather fetching rainbow spectrum of bruising - colourful browns, purples, yellow and greens.
However, I couldn't really see what was causing all this pain. All I learnt was that the really scary, stuck solid dressing, the one I couldn't get off by myself, was probably responsible. Then I got all frightened because, if there was an infection brewing there, would I become very seriously ill quite quickly without the lymph nodes they've removed that normally act as the line of defence? I now definitely couldn't phone the hospital, because I was so confused I wouldn't have made any sense, so I rang my friend Ann instead.
She was fabulous. Even when I just burst into tears on the end of the phone. Ann calmed me down and talked me through the probable reasons for my reluctance to call for help, which have been a bit of a revelation, but also quite difficult to absorb because this readjustment of my attitudes now I'm ill is going to be very painful.
Her first question " don't you think it would be better to leave all this to the medics?" hit me in a spot of total vulnerability. For the last 18 years I've been the mother of the only child in the world with his particular life-threatening medical condition, a very lonely, scary situation to be in. I have had far more experience than most of the highs and the lows of the NHS, and I have very mixed emotions about medical professionals. This really isn't the most helpful mindset to have when facing long and difficult cancer treatments, but I somehow have to examine these issues of trust.
Then Ann says "You've always been so strong, I think it's really hard for you to ask for help". Such an insightful lady. In T's early day, things were incredibly hard. I had three children under 5, and T spent over half of his first six years in hospital, seriously ill. We had over 38 hospital admissions, mostly lasting for months, and during each admission there were several times when it looked like we wouldn't be bringing him home. Even when we were home, I could never take my eye of the ball because he could just stop breathing without any notice whatsoever. I had a husband who developed mental health issues under the strain, and also escaped by over-using alcohol, becoming verbally agressive and confrontational as a result. I also had three very vulnerable tiny children. We didn't know it then, but the other two would also each go on to acquire impressively long lists of disabilities, but I did know that going under myself was simply never going to be an option. They needed me then, and they still need me now. In the intervening years I have had to stay strong and invincible, I simply can never remember ever creeping back to bed because I felt lousy, and yes, there have been plenty of times I've had nights on end with no sleep, been quite seriously ill, and felt totally pants, but I've just learnt to carry on regardless, because there has never been any other way. I've always been aware that if I ever fell apart, the children's world would just collapse. It's this frightening thought that is now threatening to sabotage my whole recovery process.
So, I really have some tough challenges ahead. I need to learn to step back, let go of the reins, and step out of the driving seat. All these things just seem shockingly frightening to do right now, as if the fall-out of me not holding it all together will precipitate a terrible calamity on all those I love so dearly. I'm really not sure I can do it.
So I eventually did ring the hospital, and a very kind doctor suggested I go in so he can see what's happening. More emotional turmoil - how do I get there - I'm not well enough to drive, in fact I haven't even got dressed for over a week. What will they do when I get there? Will it hurt? I need someone with me. But who? WM had a very busy day with meetings and a huge backlog of work mostly caused by everything I've already put him through this week, but of course, as always, he came up trumps, dropped everything, and turned up so we could go together.
The lovely young doctor was waiting for me, and had a good look, and he thinks I've got a build up of fluid inside the wound, and with a lot of rest and painkillers, it should reabsorb into the body over the next few days. Another wake-up call - I know I have really struggled with this whole rest and recuperation stuff, so I think this latest episode is nature's own way of making me face up to taking things very easily, and accepting loads of time off. So it's nothing serious, just very painful, and I came home and went virtually straight to bed where I slept like a baby for a good couple of hours, a first for me.
Although it's been hard, some lovely things that have also happened today - Ann, you're amazing, thank you. WM, you are fabulous, thank you. The kind young doctor was so lovely that maybe there might be a bit a light of the end of my trusting-the-NHS-all-over-again tunnel. I've managed lots of things I'm not very good at today - asking for help, going back to bed during the day and sleeping, and starting to accept that I have a load of emotional barriers that need to come down if I'm to truly get better.
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Monday, 25 June 2012
A nearly very lovely day
It's very tiring, all this doing nothing, and I still feel like my brain is running two years behind everyone elses. Still not entirely sure that the words I emit bear any real relationship to the conversations flowing around me, but everyone is being very kind regardless.
I've actually had a very social day today. 10 years ago I moved away from our old house, which had the world's very best neighbours. Nearly every house seemed to have a baby or toddler, and their parents were the funniest, most supportive, crazy gang of neighbours anyone could every wish for. We all lost touch for years upon years until a few months ago, when a Facebook trawl reunited us all, and we've met up for dinner twice since. We're all a lot older and probably wiser, but nothing else has really changed, and the years just melted away. Amazingly, Mel, who used to live next door, was diagnosed with breast cancer in 2008, and has been through a lot of the same stuff I'm starting to deal with now. She came over today with some beautiful flowers and a card, and we spent a really lovely afternoon together, laughing and reminiscing about the old times, sharing the tough cancer moments, and catching up with over 10 years of living too. A real tonic. Then just before she left, Anita arrived, breath of fresh air as always, so it's been a really brilliant afternoon, and being with good people just makes everything seem a squillion times better.
Someone has mentioned that they were unable to post comments at the bottom of this blog, has anyone else had similar problems, or even better, does anyone know how to overcome them? I had a few comments on the first couple of pages I wrote, but nothing since, so I just thought that either no one was reading it, or that if they were, everyone was a bit shy. If there is a problem, it would be good if we could fix it.
I've also spent hours online today, and I've discovered Twitter, though I'm not really sure how to join in yet, and some of the conversations make absolutely no sense whatsoever, but luckily, because I have breast cancer, I can blame that because it absolutely couldn't be because I am a dinosaur, now, could it?
I've also joined some forums and groups, and have caught up with current affairs a little bit too.
I can't shift the guilt that I really ought to be doing something very useful all the time, nearly 20 years of training as a mother of disabled children means that I just don't know to unwind and relax. I'm the one who is always in charge and in control and looking after everyone else and keeping all the balls in the air, and now I'm suddenly not. It's a culture shock, and is all very odd. The kids are being fabulous, though I think it's all a bit surreal - their mum never does "ill", so it must seem a bit strange and maybe even scary. WM is doing all he can to keep things going - last night he even cooked my favourite meal - yes, hunger has returned with a vengeance. I'm also munching my way through the lovely basket of fruit from Ann. Fruit is full of the goodness my body needs to build up the immune system to fight this silly cancer thing, so I can eat away completely guilt-free.
The only thing on the horizon that has thoroughly wound me up is a very silly comment from someone who should really know better about the Law of Attraction, and how people with cancer bring it on themselves by thinking the wrong thoughts. If this person actually properly understood the principles of this Law, they might realise that its sole purpose is not to allow the very fortunate to bask in their own, self-righteous smugness, and that this level of stupidity actually incites incredibly wrong thoughts in the rest of us.
Even that little rant won't spoil an otherwise nearly very lovely day!
Saturday, 23 June 2012
A good hair day
The whole world looks better and brighter today. First thing this morning, I crept up to the bathroom without advertising my plans to anyone, and washed my hair - I felt like a circus contortionist, and the whole act was as energetic as a full cardio vascular workout, but I managed it, including conditioner and hairdryer too, and somehow life just feels a whole load more manageable when your hair isn't sticking to your head. Despite getting told off by my Dad when I owned up, I was so encouraged by my success that half an hour later I did something even more adventurous and actually had a shower! That was scary, because one of the dressings came loose, and I certainly don't have enough range of movement ot reupholster my wounds all by myself. I was also quite apprehensive in case I'd dislodged something important, my lungs or ribcage perhaps, so I really had to steel myself to have a proper look in the mirror. When I did though, another unexpected surprise - the dressing I had dislodged was only covering the drainage site, so it was a tiny wound, and the dressing had been put on so tightly that my poor sore boob wound was being pulled towards my poor sore armpit wound. Once it was off I could move a hundred times more freely, when in fact I'd been beginning to think I'd have lifelong restricted movement. Immediately, some of the numbness wafted away, and best of all, within an hour or so, both my arms were the same size all over again.
Yesterday was my rock bottom day though, but made much nicer by all the lovely people I know. My fabulous Dad is of the generation which believes that any illness can be competely cured by a glass of brandy. So just before 10pm he walks around the corner to Sainsbury's to buy a bottle of Courvoisier, and comes back and pours us each a hefty glass. There are moments in life when a glass of brandy really does do the trick. Meanwhile, some Facebook friends had already read last night's blog episode, and were doing all they could to cheer me up on line, and a funny corny joke about ketchup had me grinning broadly for the first time all day.
Today I've also seen Mr T, my eldest son, who is profoundly and multiply disabled with complex medical needs, and he's been away this week while I've been having surgery. Today he's gone to stay with Mary Poppins, our nickname for his longstanding, loyal, multi-talented, kindness-personified very-close-friend-of-the-family Personal Assistant. They popped in with a card and flowers and cakes for Mummy. Mr T doesn't really understand why he's not home at the moment, but for a glorious 3 hours he was right in the thick of things again. He loves Mary Poppins and her boyfriend, Bert, and he's having a whale of a time with them while he can't be here, but I miss him terribly. Mr A, my youngest is out all day taking part in a drama festival 40 miles away, and I feel very sad because it'sthe first time ever I've had to miss a show one of my kids is in. Little Miss F, my eldest, is working today until very late, WM is doing a day of exams, and Grandad is staying with friends for the weekend, so I've had the house to myself most of the afternoon. I've almost felt like a trusted grown-up, and it's felt good.
Ann, my curtain-partner-in-crime, has just knocked on the door with a basket of fruit; delicious cherries, figs, lychees, melons and all sorts of other exotic nicenesses.
Today I think I'm nearly well enough to start enjoying this whole recuperation thing, but first I wanted to do some google research.
Since the op on Tuesday, with the less than encouraging news that the cancer has definitely spread into the lymph nodes, I've had a nagging fear that this was very bad, sad, poor prognosis type of news. So I took the bull by the horns and looked it up. I now know that women who have had my operation, but without the cancer spreading, have a whopping great 96% survival rate. For people like me, where all the lymph nodes have to be removed, it's does drop a bit, but it is still a hugely encouraging 87%! Now I know that with two simultaneous primary breast cancers, one on each side, things might not always look as rosy, and I also know that I have to wait for the results of all the biopsies for a more accurate picture of the likely extent of the spread, but regardless, I'm hanging on to the 87% of hope.
The sofa, remote, and telly are waiting patiently for me to really get going on a backlog of catch-up, and I'm back counting the many and varied benefits of contracting breast cancer all over again.
Yesterday was my rock bottom day though, but made much nicer by all the lovely people I know. My fabulous Dad is of the generation which believes that any illness can be competely cured by a glass of brandy. So just before 10pm he walks around the corner to Sainsbury's to buy a bottle of Courvoisier, and comes back and pours us each a hefty glass. There are moments in life when a glass of brandy really does do the trick. Meanwhile, some Facebook friends had already read last night's blog episode, and were doing all they could to cheer me up on line, and a funny corny joke about ketchup had me grinning broadly for the first time all day.
Today I've also seen Mr T, my eldest son, who is profoundly and multiply disabled with complex medical needs, and he's been away this week while I've been having surgery. Today he's gone to stay with Mary Poppins, our nickname for his longstanding, loyal, multi-talented, kindness-personified very-close-friend-of-the-family Personal Assistant. They popped in with a card and flowers and cakes for Mummy. Mr T doesn't really understand why he's not home at the moment, but for a glorious 3 hours he was right in the thick of things again. He loves Mary Poppins and her boyfriend, Bert, and he's having a whale of a time with them while he can't be here, but I miss him terribly. Mr A, my youngest is out all day taking part in a drama festival 40 miles away, and I feel very sad because it'sthe first time ever I've had to miss a show one of my kids is in. Little Miss F, my eldest, is working today until very late, WM is doing a day of exams, and Grandad is staying with friends for the weekend, so I've had the house to myself most of the afternoon. I've almost felt like a trusted grown-up, and it's felt good.
Ann, my curtain-partner-in-crime, has just knocked on the door with a basket of fruit; delicious cherries, figs, lychees, melons and all sorts of other exotic nicenesses.
Today I think I'm nearly well enough to start enjoying this whole recuperation thing, but first I wanted to do some google research.
Since the op on Tuesday, with the less than encouraging news that the cancer has definitely spread into the lymph nodes, I've had a nagging fear that this was very bad, sad, poor prognosis type of news. So I took the bull by the horns and looked it up. I now know that women who have had my operation, but without the cancer spreading, have a whopping great 96% survival rate. For people like me, where all the lymph nodes have to be removed, it's does drop a bit, but it is still a hugely encouraging 87%! Now I know that with two simultaneous primary breast cancers, one on each side, things might not always look as rosy, and I also know that I have to wait for the results of all the biopsies for a more accurate picture of the likely extent of the spread, but regardless, I'm hanging on to the 87% of hope.
The sofa, remote, and telly are waiting patiently for me to really get going on a backlog of catch-up, and I'm back counting the many and varied benefits of contracting breast cancer all over again.
Friday, 22 June 2012
Not a great day
It really hasn't been a fabulously great day today. I knew I wouldn't feel brilliant for a few days following surgery, but I never expected to feel so ill. I feel dizzy, faint, detatched, fuzzy-headed and my ability to talk and follow conversations has just evaporated, which is probably a delightful bonus for my family and friends. I'm never ever lost for words, and usually have an opinion on everything, but joined up speaking is beyond me at the moment. If I'm not having fun talking, I usually really enjoy eating, but I'm not even the tiniest bit hungry either. What I really can't get my head around, though, is that the surgeon, Shylock style, removed a pound of flesh from each of 3 different areas, then I've been 4 days with hardly any food, so how come I've PUT ON half a flipping stone? On top of everything else, this morning my arm became numb and swollen, and after a worrying chat with the hospital first thing, where I was told that if it got any worse I might have to go back for emergency surgery to put a drain in, I've been really good and rested it virtually completely. I don't do rest very easily. It's boring. I'm used to being in the driving seat and I hate delegating things to everyone else, so I'm not the easiest patient to look after, but the family are being very patient and kind.
There have been odd good moments though. I must be feeling a bit better because I've managed to make a one-handed cup of tea - from filling the kettle onwards, so that was a bit of excitement. And a lovely lady knocked on the door with a card and chocolates, so I really must get my appetite back quickly. Phone calls and texts from well-wishers are still coming in thick and fast too, which is really supportve, and I spent most of the day with WM, which is always lovely. My brilliant Dad is back tonight to stay over and hold the fort again, his fried eggs on potato cakes yesterday hit the spot completely, and that's been my only proper meal all week.
My intended recovery plan was to lie under the duvet on the sofa and watch oodles of rubbish telly, then read dozens of badly written novels, but right now, I haven't got the concentration for either which is really frustrating.
Tomorrow, I'm going to try and wash my hair (one-handed, that should be interesting!), make another cup of tea, and hog the remote control all day, and if I'm really adventurous I might even eat a chocolate or several too.
There have been odd good moments though. I must be feeling a bit better because I've managed to make a one-handed cup of tea - from filling the kettle onwards, so that was a bit of excitement. And a lovely lady knocked on the door with a card and chocolates, so I really must get my appetite back quickly. Phone calls and texts from well-wishers are still coming in thick and fast too, which is really supportve, and I spent most of the day with WM, which is always lovely. My brilliant Dad is back tonight to stay over and hold the fort again, his fried eggs on potato cakes yesterday hit the spot completely, and that's been my only proper meal all week.
My intended recovery plan was to lie under the duvet on the sofa and watch oodles of rubbish telly, then read dozens of badly written novels, but right now, I haven't got the concentration for either which is really frustrating.
Tomorrow, I'm going to try and wash my hair (one-handed, that should be interesting!), make another cup of tea, and hog the remote control all day, and if I'm really adventurous I might even eat a chocolate or several too.
Thursday, 21 June 2012
Home safely, happy but shattered
It is so lovely to be back home in my new, bright red bedroom. Yesterday was not one of my favourite days ever, for a start, getting up at 5.30am really isn't something I'm good at, and then getting to the hospital for 7.30am, already shattered, starving and sleep deprived , for a really hectic morning schedule.
The staff at the hospital were universally really lovely, helpful and supportive, making both my wonderful man and I incredibly welcome and absolutely nothing was too much trouble. Within minutes of arrival, I had met the anaesthetist and the surgeon, and decided to be totally honest about my ridiculous needle phobia. Something I've always been ashamed of, and have always tried to hide, but I figured that this breast cancer malarkey is going to be tough enough, and if there's anything they can do to help, well grab any help I can. The anaethetist immediately promised to use gas, first laughing gas, then sleeping gas, before having to put any needles in. I could feel the anxiety draining away already.
Then it was an appointment with nuclear medicine, to inject radioactive dye into my nipple. I explained again about my needle phobia, and Wonderful Man was allowed to stay throughout the whole procedure which made a huge difference.
Then onto the ultrasound dept, where more injections, but with WM with me again, numbed my boobs so they could insert wires - scarily long wires that hook into the tumours so the surgeon knows exactly where to go fishing, but the other end, over a foot long sticking out of each side, could take a man's eye out. If they had only tied tassles onto the end of them I would definitely have won Britain's Got Talent.
Then another mammogram, then back to the ward to wait..... and wait.... and wait.... By the time I was called it was 1.30pm and by now my anxieties had convinced me that I was definitely going to be the one person in squillions that pops their clogs on the operating table. Walked to the theatre which is much more dignified than being pushed on a trolley, and made sure I greeted everyone in the room with a smile and a handshake. The anaethetist was really funny, and I told him I was frightened I wasn't going to make it, and he assured me that that wouldn't happen because he'd have to do too much paperwork. I can't remember much else of our conversation but I do know that we were all laughing and it was very relaxed and happy. As I went under, I remember thinking that this wouldn't actually be such a bad way to go after all!
Next I knew was 6 hours later. First question, what's the time, and I knew that something fairly major was amiss. Surgery had been scheduled for about 90 minutes. Next question, can I go home please? No. All along they had stressed how this procedure was day surgery, and how they like to get people home safely away from infection risk quickly. Now they were telling me I had to stay overnight. I'm drifting in and out of consciousness and the surgeon comes to see me. I must have been presenting as much more awake and alert and I must also have asked some stupidly scary questions. The only words I remember her telling me were "bigger tumour than we thought" "not sure we've got it all" "another operation" "spread" "all the lymph nodes" and "incurable". I don't know where this word cropped up from, and this morning it was clear that this isn't the case, but I do remember getting very stroppy about it. I hope I wasn't rude, but in my stupor I tried to tell her that what she really meant was that at the moment it isn't curable YET, and that her job was to keep me alive until they found out how to cure it. Cure what, goodness only knows, but I remember everyone laughing and some bloke still in his hat, mask and gown saying "that's the spirit, you go, girl".
I barely remember getting back to the ward where WM, my dad and two of my adorable children were waiting for me. I was thirsty beyond belief, and stroppy and difficult. I had missed supper, I had a thick tube drain in, I was oxygen dependent, with a drip in my arm, and thoroughly miserable because I could only remember the word "incurable". In theatre I'd been morphined up to my eyebrows so there was very little pain, but that didn't stop me giving my lovely family a really unfairly horribly hard time.
This morning the surgeon came back and explained exactly what had happened. Yes, one of the tumours was significantly larger than they had expected, and they are not sure whether they have removed all of it with the necessary 2cm clear margin all around it, so they may decide to operate again in a couple of weeks. The other bit of bad news was that they found cancer cells in the first 3 lymph nodes, so they have had to remove them all, and they will be tested to see if the cancer has spread further. At the moment, they just don't know the answers to that. He then sits on the bed and tells me that my job is to rest loads, get properly well, and be strong enough to help them make treatment decisions when I go back to see them in two weeks time. Almost certainly more surgery, radiation, chemo and hormone therapy. Welcome to my new world.
Finally, 4 hours later the pharmacy got its act together to give me the drugs to go home with - (why do hospital pharmacies always delay discharges?) My family are very kind and forgiving over my hissy fits last night, and everyone is being so nice it's untrue. Best of all, I have a bright, loud, turquoise dressing gown, and my radioactive boob now colour matches it exactly! My kids reckon it shows I've got superpowers - and over the next few months I think I might actually need some.
The staff at the hospital were universally really lovely, helpful and supportive, making both my wonderful man and I incredibly welcome and absolutely nothing was too much trouble. Within minutes of arrival, I had met the anaesthetist and the surgeon, and decided to be totally honest about my ridiculous needle phobia. Something I've always been ashamed of, and have always tried to hide, but I figured that this breast cancer malarkey is going to be tough enough, and if there's anything they can do to help, well grab any help I can. The anaethetist immediately promised to use gas, first laughing gas, then sleeping gas, before having to put any needles in. I could feel the anxiety draining away already.
Then it was an appointment with nuclear medicine, to inject radioactive dye into my nipple. I explained again about my needle phobia, and Wonderful Man was allowed to stay throughout the whole procedure which made a huge difference.
Then onto the ultrasound dept, where more injections, but with WM with me again, numbed my boobs so they could insert wires - scarily long wires that hook into the tumours so the surgeon knows exactly where to go fishing, but the other end, over a foot long sticking out of each side, could take a man's eye out. If they had only tied tassles onto the end of them I would definitely have won Britain's Got Talent.
Then another mammogram, then back to the ward to wait..... and wait.... and wait.... By the time I was called it was 1.30pm and by now my anxieties had convinced me that I was definitely going to be the one person in squillions that pops their clogs on the operating table. Walked to the theatre which is much more dignified than being pushed on a trolley, and made sure I greeted everyone in the room with a smile and a handshake. The anaethetist was really funny, and I told him I was frightened I wasn't going to make it, and he assured me that that wouldn't happen because he'd have to do too much paperwork. I can't remember much else of our conversation but I do know that we were all laughing and it was very relaxed and happy. As I went under, I remember thinking that this wouldn't actually be such a bad way to go after all!
Next I knew was 6 hours later. First question, what's the time, and I knew that something fairly major was amiss. Surgery had been scheduled for about 90 minutes. Next question, can I go home please? No. All along they had stressed how this procedure was day surgery, and how they like to get people home safely away from infection risk quickly. Now they were telling me I had to stay overnight. I'm drifting in and out of consciousness and the surgeon comes to see me. I must have been presenting as much more awake and alert and I must also have asked some stupidly scary questions. The only words I remember her telling me were "bigger tumour than we thought" "not sure we've got it all" "another operation" "spread" "all the lymph nodes" and "incurable". I don't know where this word cropped up from, and this morning it was clear that this isn't the case, but I do remember getting very stroppy about it. I hope I wasn't rude, but in my stupor I tried to tell her that what she really meant was that at the moment it isn't curable YET, and that her job was to keep me alive until they found out how to cure it. Cure what, goodness only knows, but I remember everyone laughing and some bloke still in his hat, mask and gown saying "that's the spirit, you go, girl".
I barely remember getting back to the ward where WM, my dad and two of my adorable children were waiting for me. I was thirsty beyond belief, and stroppy and difficult. I had missed supper, I had a thick tube drain in, I was oxygen dependent, with a drip in my arm, and thoroughly miserable because I could only remember the word "incurable". In theatre I'd been morphined up to my eyebrows so there was very little pain, but that didn't stop me giving my lovely family a really unfairly horribly hard time.
This morning the surgeon came back and explained exactly what had happened. Yes, one of the tumours was significantly larger than they had expected, and they are not sure whether they have removed all of it with the necessary 2cm clear margin all around it, so they may decide to operate again in a couple of weeks. The other bit of bad news was that they found cancer cells in the first 3 lymph nodes, so they have had to remove them all, and they will be tested to see if the cancer has spread further. At the moment, they just don't know the answers to that. He then sits on the bed and tells me that my job is to rest loads, get properly well, and be strong enough to help them make treatment decisions when I go back to see them in two weeks time. Almost certainly more surgery, radiation, chemo and hormone therapy. Welcome to my new world.
Finally, 4 hours later the pharmacy got its act together to give me the drugs to go home with - (why do hospital pharmacies always delay discharges?) My family are very kind and forgiving over my hissy fits last night, and everyone is being so nice it's untrue. Best of all, I have a bright, loud, turquoise dressing gown, and my radioactive boob now colour matches it exactly! My kids reckon it shows I've got superpowers - and over the next few months I think I might actually need some.
Monday, 18 June 2012
A very happy last day of normality
5 weeks ago, I learnt that I had breast cancer. I have done it really well, allowing two completely unrelated, entirely different cancers, one on each side. Horrible, harrowing devastating news, and yet the past five weeks have also brought so many positives. My friends, more than I knew I had, have been fabulously supportive, and their love and concern have carried me miles and kept my spirits higher than high. My family, always a solid rock in the background, have just risen to the challenge and are as solidly loving as ever, and my wonderful man, who I always knew was very special, has just been by my side since the moment we were told.
It's been the catalyst for sorting out the admin mountain, I'm a single mother, with three disabled children - as if that wasn't hard enough the world and his brother bombard parents like me with mindless paperwork - it comes in far faster than I can possibly process it. I've sorted out the clutter that never gets done, and I've even had a bedroom makeover - something I've always wanted but the potential embarrassment factor of doctors visiting in the next few days has finally kicked me up the butt and today, new curtains, new bedding, new floor and new, bright red fitted wardrobes are up and running.
My feet haven't hit the ground since diagnosis day - making contingency plans for the kids has been very difficult. Time has always been in very short supply, and I certainly don't have time for cancer, nor for the punishingly extra workload it has inevitably dumped on my doorstep.
So today is the last day of life as I know it. Tomorrow it all kicks off. I'm due to report for surgery at 7.30am, but before anaesthetic, they are intending to put me through my paces, inserting wires that will hook into each tumour, and a radioactive injection so they can locate the lymph nodes properly. Oh bliss and joy. Not. Blind terror doesn't even come close to how I'm viewing tomorrow, and I think the words "significant post-operative disfigurement" that I've read haven't helped one bit. I'm needle-phobic at the best of times, and although I have many special talents, bravery definitely isn't one of them.
Over the past few weeks, I've had plenty of very emotional moments, including one or two ridiculously blubby days, but cancer also makes you very alert and awake to the really great moments along the way, and today I was determined to enjoy my last day of freedom as much as I possibly could. Thank you Ann for coming shopping, for helping me choose and carry crazy armloads of curtain and bedding back to your car, and for making me laugh all day long. Lunch was yummy, and then you stayed and helped hang curtains, sewing stray bits and pieces and even cleaning my windows! Yes there are definite advantages to having cancer, under any other circumstances I'd be mortified to have a really good mate go anywhere near my dirt! And thank you Anita too - the bedroom would never have got done without those lovely afternoons with you cleaning and tidying my bedroom clutter.
This evening the Facebook messages, emails, texts and phonecalls have been non-stop from lovely people wishing me well. Every one makes my day, and I'm humbled by the love and support that's flowing my way.
I read a lovely quote "I've got cancer, but cancer hasn't got me". Cancer has made me really appreciate all the great bits of my life and focus on the important things - friendships, family, relationships and fun - and I'm not going to stop enjoying whatever good things life delivers.
So tomorrow is another day, another adventure, and the fight begins. I'm tempted to book a one-way flight somewhere nice and sunny where cancer doesn't happen, but I'd miss you all far too much. In an hour I have to start the pre-op fast, so I'm about to stuff my face with as many chocolates as I can manage washed down with as much red wine as I can. Oops, now there's only 58 minutes left - the chocs are calling so I've got to go..... as soon as I can I'll post again to tell you what happens next .
Yvonne
It's been the catalyst for sorting out the admin mountain, I'm a single mother, with three disabled children - as if that wasn't hard enough the world and his brother bombard parents like me with mindless paperwork - it comes in far faster than I can possibly process it. I've sorted out the clutter that never gets done, and I've even had a bedroom makeover - something I've always wanted but the potential embarrassment factor of doctors visiting in the next few days has finally kicked me up the butt and today, new curtains, new bedding, new floor and new, bright red fitted wardrobes are up and running.
My feet haven't hit the ground since diagnosis day - making contingency plans for the kids has been very difficult. Time has always been in very short supply, and I certainly don't have time for cancer, nor for the punishingly extra workload it has inevitably dumped on my doorstep.
So today is the last day of life as I know it. Tomorrow it all kicks off. I'm due to report for surgery at 7.30am, but before anaesthetic, they are intending to put me through my paces, inserting wires that will hook into each tumour, and a radioactive injection so they can locate the lymph nodes properly. Oh bliss and joy. Not. Blind terror doesn't even come close to how I'm viewing tomorrow, and I think the words "significant post-operative disfigurement" that I've read haven't helped one bit. I'm needle-phobic at the best of times, and although I have many special talents, bravery definitely isn't one of them.
Over the past few weeks, I've had plenty of very emotional moments, including one or two ridiculously blubby days, but cancer also makes you very alert and awake to the really great moments along the way, and today I was determined to enjoy my last day of freedom as much as I possibly could. Thank you Ann for coming shopping, for helping me choose and carry crazy armloads of curtain and bedding back to your car, and for making me laugh all day long. Lunch was yummy, and then you stayed and helped hang curtains, sewing stray bits and pieces and even cleaning my windows! Yes there are definite advantages to having cancer, under any other circumstances I'd be mortified to have a really good mate go anywhere near my dirt! And thank you Anita too - the bedroom would never have got done without those lovely afternoons with you cleaning and tidying my bedroom clutter.
This evening the Facebook messages, emails, texts and phonecalls have been non-stop from lovely people wishing me well. Every one makes my day, and I'm humbled by the love and support that's flowing my way.
I read a lovely quote "I've got cancer, but cancer hasn't got me". Cancer has made me really appreciate all the great bits of my life and focus on the important things - friendships, family, relationships and fun - and I'm not going to stop enjoying whatever good things life delivers.
So tomorrow is another day, another adventure, and the fight begins. I'm tempted to book a one-way flight somewhere nice and sunny where cancer doesn't happen, but I'd miss you all far too much. In an hour I have to start the pre-op fast, so I'm about to stuff my face with as many chocolates as I can manage washed down with as much red wine as I can. Oops, now there's only 58 minutes left - the chocs are calling so I've got to go..... as soon as I can I'll post again to tell you what happens next .
Yvonne
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