Showing posts with label Chemotherapy. Show all posts
Showing posts with label Chemotherapy. Show all posts
Saturday, 29 December 2012
Adventures with breast cancer: Patient Power
Adventures with breast cancer: Patient Power: What a fabulously lovely Christmas I've just had - surrounded by the most of the people I love best in the world - my amazing dad, my lovely...
Patient Power
What a fabulously lovely Christmas I've just had - surrounded by the most of the people I love best in the world - my amazing dad, my lovely sister, WM and my three gorgeous children. So I was up to my eyes in chemo side-effects, beyond exhausted and barely able to stand, but I still managed to cook the whole Christmas 4-course meal with trimmings galore, even if I wasn't able to eat it myself. There were so many presents for the kids that opening them all took all day, with Toby starting at 3am when he discovered Santa Claus had already delivered a sack load of presents on the end of his bed.
The presents weren't just for the children. I was really touched by the thoughtfulness that had gone into choosing presents especially for me. One friend had taken the trouble to text WM to let him know that BHS were selling a "Coke Float Kit", another gave me a Mint Hot Chocolate Kit, including the mini-marshallows to go on the top, Mary Poppins gave me a really gorgeous mug covered with photos of Toby - every photo exudes his unique joy an exuberance, and another friend gave me some Guatemalan Worry People - 7 tiny little hand-made dolls that you tell your worries to and then sleep with them under your pillow - the worries then melt away overnight, apparently.
All told, the whole day just seemed to be packed full of love. There were no rows or arguments, everyone was delightful, helpful and just perfect all day, and to be honest, that feeling of love has lasted all week so far. Although I packed cancer away in the back of my mind for the week, I think one of the many avantages of having cancer is that it makes me far more aware of the nice moments, more appreciative and much more in tune to counting my blessings, of which there are so many.
Overshadowing the whole week, though, has been the chemotherapy and how pants it has made me feel. I try to tune it out, and to pretend it's fairly nothing, but it's there and I can't always ignore it.The inability to eat, or to drink, the sometimes excrutiating bone pain, the stomach upsets that sometimes have kept me in the bathroom for hours on end, even during the night, the numbness in my hands and feet which make me clumsy as well as very unsteady when walking, the total, awful exhaustion - not really sleep related, more to do with exhaustion seeping into every bone and muscle - they all combine and make even standing out of a chair seem like a Herculian effort.
Normally I don't just think I'm going to come through this cancer to live a long, happy and healthy several more decades, I absolutely know it. I'm normally irritatingly, enthusiastically positive about every last cancer cell being obliterated into oblivion. Chemo weeks are the exception. When the chemo is doing it's brilliant job of hunting down and fatally poisoning any stray cancer cell that has the audicity to think it can hang around in my body, somehow all the doubts and fears come flooding into my consciousness, and I spend a week or so convinced I'll soon be pushing up the daisies. This week has been no exception. I try to hide it, and thought I was good at that, but my extremely insightful daughter noticed. "Mum," she said, "People always say how positive you are, don't they? Well I can see that you're not at all. What you are is cheerful about it, and people think cheerful and positive are the same things, but they're not. I never realised til now what a negative pessimist you really are." Oops, I'd better try harder in future.
Chemo is over, the whole six cycles, so positivity will come back with a vengeance in the next few days. However, now it's over, I've got to seriously get back on the wagon of eating a counter-cancer diet and adopting a counter-cancer lifestyle. The past four months on chemo have been an ordeal, and at times eating anything at all for days on end has been impossible. Getting through it was the priority, and in the knowledge that the chemo was fighting a mighty battle against any residual cancer cells, I let myself off the hook. Now that I won't have the chemo back-up, I've got to re-establish all the stuff I tried so hard to do during the summer. Green tea by the gallon, exercising daily, spoon-fuls of tumeric, garlic and ginger, shed loads of fruit and veg, and cutting out all processed food. Why do things that are bad for you taste so good? I'm currently into a salami-and-salad-cream-sandwich-on-very-while-bread phase - a glorious cacophony of processed food at it's best.
I feel that my body is like the World War battlefields. Everytime I eat something good, I can see the enemy cancer cells being chased away by my strengthened immune-system army at it's best, but every time I pop a chocolate or a biscuit into my mouth, I can see the swaggering, smug cancer cell army taking more than a pop at my precious immune system. It's a constant fight between good and bad, and this is the fight of my life and I really want to win it. So why do I seem to have a natural affinity with the enemy? When I eat a biscuit or a salami and salad-cream sandwich, I'm being a traitor to the cause, and I might as well just open the borders and let the enemy sail right on up triumphantly through my whole bloodstream. This whole constant battle plays out in my head nearly all the time, and it's not just about the food I'm eating. It's the thoughts I'm thinking, the exercise I'm not doing, and the rest and relaxation I'm not taking.So give it a week or so, and I'll have to write a battle strategy and this time, I'll have to stick to it. This cancer needs all the big-guns from all directions - both what the Generals from the medical profession can throw at it and what this little Home Guard can do on my own. "Who do you think you are kidding, Mr Cancer?" - that's my theme tune now.
Patient Power comes in all sorts of guises, both in taking ownership and doing whatever you can to augment the best in modern medicine in terms of lifestyle an diet, and also in finding a way to have a meaningful dialogue with your medical team about aspects of your care that you are not comfortable about.
If you've been reading my writings for a while, you'll know that one of my biggest challenges with Cancer has been finding a way to cope with my extreme needle-phobia. I've decided early on to come out of the closet and admit this shameful secret to my Oncology Team. Almost without exception, they have been so supportive about it, but it was clear that, whilst being very kind and sympathetic, they were puzzled by it and its causes. I researched into the topic a bit, and although the Internet has a fair amount of material written about needle-phobia, I couldn't find a single word written by a needle-phobic patient, all the articles appear to be written by health professionals. So I wrote a blog-post about it, probably the hardest and most personal piece of writing I've ever done, and probably the first piece of writing on the subject from a patient perspective. It's been warmly received by many of the medical profession, and now I've been invited to speak at a very prestigious conference about it in London next June. I'm thrilled about this on a lot of different levels, not least because I'll get a nice posh day out in a top London Hotel, but also because it looks like needle-phobia is being taken seriously, and I'm being given an opportunity to raise awareness and maybe even begin to influence medical culture and practice in some small way. I feel very honoured, but also aware that I have a responsibility to do the best possible job in explaining and advocating on behalf of the many thousands of fellow-sufferers, many of whom are probably too ashamed to own up to it.
If you know any health professionals who might want to read it what I wrote about this subject, it's in the list on the side with "needle-phobia" as part of the title. Please feel free to pass it on.
So a very busy year ahead already. The play of this blog, "Coke Floats and Chemo". still needs to be written in time to rehearse it for it's debut at the Brighton Fringe in May. Then speaking at the conference in June. In between times, I'll be fighting my cancer on the beaches, getting very better, and planning a bucket list for my next 30 years. It will be a very good year - the writing's on the wall already. If I don't write again this year, all the very best for a lovely start to 2013. My heart wants a party on New Year's Eve. My head says "Don't be ridiculous, you're exhausted!". I'll let you know what I actually decide, and my good friends may yet get a last minute party phone-call ....... !
The presents weren't just for the children. I was really touched by the thoughtfulness that had gone into choosing presents especially for me. One friend had taken the trouble to text WM to let him know that BHS were selling a "Coke Float Kit", another gave me a Mint Hot Chocolate Kit, including the mini-marshallows to go on the top, Mary Poppins gave me a really gorgeous mug covered with photos of Toby - every photo exudes his unique joy an exuberance, and another friend gave me some Guatemalan Worry People - 7 tiny little hand-made dolls that you tell your worries to and then sleep with them under your pillow - the worries then melt away overnight, apparently.
All told, the whole day just seemed to be packed full of love. There were no rows or arguments, everyone was delightful, helpful and just perfect all day, and to be honest, that feeling of love has lasted all week so far. Although I packed cancer away in the back of my mind for the week, I think one of the many avantages of having cancer is that it makes me far more aware of the nice moments, more appreciative and much more in tune to counting my blessings, of which there are so many.
Overshadowing the whole week, though, has been the chemotherapy and how pants it has made me feel. I try to tune it out, and to pretend it's fairly nothing, but it's there and I can't always ignore it.The inability to eat, or to drink, the sometimes excrutiating bone pain, the stomach upsets that sometimes have kept me in the bathroom for hours on end, even during the night, the numbness in my hands and feet which make me clumsy as well as very unsteady when walking, the total, awful exhaustion - not really sleep related, more to do with exhaustion seeping into every bone and muscle - they all combine and make even standing out of a chair seem like a Herculian effort.
Normally I don't just think I'm going to come through this cancer to live a long, happy and healthy several more decades, I absolutely know it. I'm normally irritatingly, enthusiastically positive about every last cancer cell being obliterated into oblivion. Chemo weeks are the exception. When the chemo is doing it's brilliant job of hunting down and fatally poisoning any stray cancer cell that has the audicity to think it can hang around in my body, somehow all the doubts and fears come flooding into my consciousness, and I spend a week or so convinced I'll soon be pushing up the daisies. This week has been no exception. I try to hide it, and thought I was good at that, but my extremely insightful daughter noticed. "Mum," she said, "People always say how positive you are, don't they? Well I can see that you're not at all. What you are is cheerful about it, and people think cheerful and positive are the same things, but they're not. I never realised til now what a negative pessimist you really are." Oops, I'd better try harder in future.
Chemo is over, the whole six cycles, so positivity will come back with a vengeance in the next few days. However, now it's over, I've got to seriously get back on the wagon of eating a counter-cancer diet and adopting a counter-cancer lifestyle. The past four months on chemo have been an ordeal, and at times eating anything at all for days on end has been impossible. Getting through it was the priority, and in the knowledge that the chemo was fighting a mighty battle against any residual cancer cells, I let myself off the hook. Now that I won't have the chemo back-up, I've got to re-establish all the stuff I tried so hard to do during the summer. Green tea by the gallon, exercising daily, spoon-fuls of tumeric, garlic and ginger, shed loads of fruit and veg, and cutting out all processed food. Why do things that are bad for you taste so good? I'm currently into a salami-and-salad-cream-sandwich-on-very-while-bread phase - a glorious cacophony of processed food at it's best.
I feel that my body is like the World War battlefields. Everytime I eat something good, I can see the enemy cancer cells being chased away by my strengthened immune-system army at it's best, but every time I pop a chocolate or a biscuit into my mouth, I can see the swaggering, smug cancer cell army taking more than a pop at my precious immune system. It's a constant fight between good and bad, and this is the fight of my life and I really want to win it. So why do I seem to have a natural affinity with the enemy? When I eat a biscuit or a salami and salad-cream sandwich, I'm being a traitor to the cause, and I might as well just open the borders and let the enemy sail right on up triumphantly through my whole bloodstream. This whole constant battle plays out in my head nearly all the time, and it's not just about the food I'm eating. It's the thoughts I'm thinking, the exercise I'm not doing, and the rest and relaxation I'm not taking.So give it a week or so, and I'll have to write a battle strategy and this time, I'll have to stick to it. This cancer needs all the big-guns from all directions - both what the Generals from the medical profession can throw at it and what this little Home Guard can do on my own. "Who do you think you are kidding, Mr Cancer?" - that's my theme tune now.
Patient Power comes in all sorts of guises, both in taking ownership and doing whatever you can to augment the best in modern medicine in terms of lifestyle an diet, and also in finding a way to have a meaningful dialogue with your medical team about aspects of your care that you are not comfortable about.
If you've been reading my writings for a while, you'll know that one of my biggest challenges with Cancer has been finding a way to cope with my extreme needle-phobia. I've decided early on to come out of the closet and admit this shameful secret to my Oncology Team. Almost without exception, they have been so supportive about it, but it was clear that, whilst being very kind and sympathetic, they were puzzled by it and its causes. I researched into the topic a bit, and although the Internet has a fair amount of material written about needle-phobia, I couldn't find a single word written by a needle-phobic patient, all the articles appear to be written by health professionals. So I wrote a blog-post about it, probably the hardest and most personal piece of writing I've ever done, and probably the first piece of writing on the subject from a patient perspective. It's been warmly received by many of the medical profession, and now I've been invited to speak at a very prestigious conference about it in London next June. I'm thrilled about this on a lot of different levels, not least because I'll get a nice posh day out in a top London Hotel, but also because it looks like needle-phobia is being taken seriously, and I'm being given an opportunity to raise awareness and maybe even begin to influence medical culture and practice in some small way. I feel very honoured, but also aware that I have a responsibility to do the best possible job in explaining and advocating on behalf of the many thousands of fellow-sufferers, many of whom are probably too ashamed to own up to it.
If you know any health professionals who might want to read it what I wrote about this subject, it's in the list on the side with "needle-phobia" as part of the title. Please feel free to pass it on.
So a very busy year ahead already. The play of this blog, "Coke Floats and Chemo". still needs to be written in time to rehearse it for it's debut at the Brighton Fringe in May. Then speaking at the conference in June. In between times, I'll be fighting my cancer on the beaches, getting very better, and planning a bucket list for my next 30 years. It will be a very good year - the writing's on the wall already. If I don't write again this year, all the very best for a lovely start to 2013. My heart wants a party on New Year's Eve. My head says "Don't be ridiculous, you're exhausted!". I'll let you know what I actually decide, and my good friends may yet get a last minute party phone-call ....... !
Tuesday, 4 December 2012
Adventures with breast cancer: A wake-up call week
Adventures with breast cancer: A wake-up call week: I don't normally struggle for words, but trying to find a way to describe the past week and a half of harrowing horribleness has just about ...
A wake-up call week
I don't normally struggle for words, but trying to find a way to describe the past week and a half of harrowing horribleness has just about defeated me. They say what doesn't kill you makes you stronger, but I feel washed-up, broken and battered, and with all the fight sucked out of my soul. So we're not going to focus on that today! Instead, I'm going to tell you about all those tiny little moments during the week when loveliness and kindness pierced through the misery and kept me going.
1. Herceptin day. It was a long, boring day, and I thought that I was at risk of a heart attack. Apparently I wasn't, I'd got that bit wrong. So that was a bonus. Also the nurses pulled out all the stops for me, and were just kindness personified. I also met some lovely people going through the same stuff as me, and what could have been a very scary, tedious and frightening day was made bearable by lovely people.
2. During Herceptin day I had a real treat! WM bumped into Ann and Vaughn in the hospital reception who we had met at the Penny Brohn Centre. Ann was there for an appointment too. So they came to visit me on the unit, and it was so lovely to see them both. Ann is looking so well and fit and happy, and it was just like meeting long-lost friends. We chatted for about half an hour, and they were able to bring us up to speed on the latest news of Ann's inspirational project.
Ann was diagnosed in January of this year with mesothelioma, which is an incurable lung cancer caused by exposure to asbestos. Devastatingly shocking news, enough to flatten many people, but not Ann. Instead, has decided to use whatever remaining time she has left (and we are all hoping that that remaining time runs into decades) to fund a very exciting educational project, the Ann Nussey Forest School Project, which aims to inspire a generation of children with a love of nature, giving them very hand-on opportunities to explore. Ann is generously funding the entire first year's running costs from her own pocket, and has set up a "Just Giving" page to raise the rest, and I promised I'd share the link here, so you can find out a bit more.
http://www.justgiving.com/AnnNusseyForestSchool
3. On Tuesday, it was my lovely sister's birthday, and guess what she did to celebrate? She turned up in the morning and came with me to Chemo! It was really lovely having a couple of hours to ourselves as the chemo dripped slowly into my system, and although we're had many more exciting birthday outings between us over the years, there was something really special about this one, too.
4. Another chemo bonus - because they had had to access the Portacath the previous day for Herceptin, they allowed me to keep the contraption in place overnight, so no more needles on chemo day !
5. On Wednesday, WM and I managed a flying visit to my favourite hot chocolate cafe at TK Maxx, where they do a hot chocolate to die for - mint chocolate with marshmallows, a mountain of fresh cream and then sprinkle it with chocolate dust - and caught up with his sister and brother-in-law, who gave me probably the most thoughtfully off-the-wall present ever - a whole sheet of stick-on eyebrows! Since mine have completely disappeared along with the eyelashes so I look like something out of a horror-movie on a good day, these new eyebrows will save a child or two the fright of their lives!
6. Then a mega day out on Thursday, up to St Albans for more Laughter Yoga Leader training. A really lovely day out, catching up with Lotte, and meeting new laughter colleagues Mel and Kat, I can now offer one-to-one laughter courses over an 8 week period, on a much more intensive, therapeutic basis. Laughter Yoga has so many benefits, and this course really focused much more on the health and well-being benefits of introducing laughter on a daily basis into all our lives. Once chemo is over, I'm hoping to be able to offer this course on Skype, but meanwhile, I'm going to trial it with a few friends, to gain a bit more confidence. Ann, who I mentioned earlier, has very kindly offered to be my first guinea pig! It is ideal for people like me who are coping with illness, as well as people who have busy lifestyles and can't commit to a regular class, and it also very helpful for people with depression or energy disorders.
7. On Friday, I had an appointment with a specialist cancer psychologist. Ooh eer. I went in convinced it was a "tick-box" exercise, and that I had no issues and was coping really well, and then it all turned around and bit me on the bum and I realised that it wasn't quite like that at all. A real wake-up call moment, and it's been like a pebble in the still pond, the more time goes on since Friday, the more I'm understanding that I'm just not dealing with everything that's happened over the past few months nearly well enough. I'm doing what I'm best at - telling myself and everyone else that everything is fine, and on Friday I began to see just how not fine things really are. All very sobering, and I can see that once we're through the awful crisis we're dealing with at the moment, everything will have to be rebuilt just a little bit differently which will take the time, patience and energy I just don't seem to be able to muster at the moment. So why is this on my list of "lovely" moments? Because it had to happen, and my whole family will one day become stronger because of it.
8. On Saturday, we managed a little birthday party for my sister and Mary Poppins, with Toby, our resident Birthday King, blowing out the candles and opening their presents in the expert way only he can. Thornton's Toffee cake is honestly the very best there is.
Then since Friday evening, I've been back hibernating through the awfulness of chemo hell, but today it's just beginning to lift. It better had quickly because I think I'm the only person in the country who hasn't given a thought to Christmas yet, so thank goodness for Amazon and Internet shopping - I'm intending to hit the virtual high streets in my pyjamas!
Lovely Moments this week!
1. Herceptin day. It was a long, boring day, and I thought that I was at risk of a heart attack. Apparently I wasn't, I'd got that bit wrong. So that was a bonus. Also the nurses pulled out all the stops for me, and were just kindness personified. I also met some lovely people going through the same stuff as me, and what could have been a very scary, tedious and frightening day was made bearable by lovely people.
2. During Herceptin day I had a real treat! WM bumped into Ann and Vaughn in the hospital reception who we had met at the Penny Brohn Centre. Ann was there for an appointment too. So they came to visit me on the unit, and it was so lovely to see them both. Ann is looking so well and fit and happy, and it was just like meeting long-lost friends. We chatted for about half an hour, and they were able to bring us up to speed on the latest news of Ann's inspirational project.
Ann was diagnosed in January of this year with mesothelioma, which is an incurable lung cancer caused by exposure to asbestos. Devastatingly shocking news, enough to flatten many people, but not Ann. Instead, has decided to use whatever remaining time she has left (and we are all hoping that that remaining time runs into decades) to fund a very exciting educational project, the Ann Nussey Forest School Project, which aims to inspire a generation of children with a love of nature, giving them very hand-on opportunities to explore. Ann is generously funding the entire first year's running costs from her own pocket, and has set up a "Just Giving" page to raise the rest, and I promised I'd share the link here, so you can find out a bit more.
http://www.justgiving.com/AnnNusseyForestSchool
3. On Tuesday, it was my lovely sister's birthday, and guess what she did to celebrate? She turned up in the morning and came with me to Chemo! It was really lovely having a couple of hours to ourselves as the chemo dripped slowly into my system, and although we're had many more exciting birthday outings between us over the years, there was something really special about this one, too.
4. Another chemo bonus - because they had had to access the Portacath the previous day for Herceptin, they allowed me to keep the contraption in place overnight, so no more needles on chemo day !
5. On Wednesday, WM and I managed a flying visit to my favourite hot chocolate cafe at TK Maxx, where they do a hot chocolate to die for - mint chocolate with marshmallows, a mountain of fresh cream and then sprinkle it with chocolate dust - and caught up with his sister and brother-in-law, who gave me probably the most thoughtfully off-the-wall present ever - a whole sheet of stick-on eyebrows! Since mine have completely disappeared along with the eyelashes so I look like something out of a horror-movie on a good day, these new eyebrows will save a child or two the fright of their lives!
6. Then a mega day out on Thursday, up to St Albans for more Laughter Yoga Leader training. A really lovely day out, catching up with Lotte, and meeting new laughter colleagues Mel and Kat, I can now offer one-to-one laughter courses over an 8 week period, on a much more intensive, therapeutic basis. Laughter Yoga has so many benefits, and this course really focused much more on the health and well-being benefits of introducing laughter on a daily basis into all our lives. Once chemo is over, I'm hoping to be able to offer this course on Skype, but meanwhile, I'm going to trial it with a few friends, to gain a bit more confidence. Ann, who I mentioned earlier, has very kindly offered to be my first guinea pig! It is ideal for people like me who are coping with illness, as well as people who have busy lifestyles and can't commit to a regular class, and it also very helpful for people with depression or energy disorders.
7. On Friday, I had an appointment with a specialist cancer psychologist. Ooh eer. I went in convinced it was a "tick-box" exercise, and that I had no issues and was coping really well, and then it all turned around and bit me on the bum and I realised that it wasn't quite like that at all. A real wake-up call moment, and it's been like a pebble in the still pond, the more time goes on since Friday, the more I'm understanding that I'm just not dealing with everything that's happened over the past few months nearly well enough. I'm doing what I'm best at - telling myself and everyone else that everything is fine, and on Friday I began to see just how not fine things really are. All very sobering, and I can see that once we're through the awful crisis we're dealing with at the moment, everything will have to be rebuilt just a little bit differently which will take the time, patience and energy I just don't seem to be able to muster at the moment. So why is this on my list of "lovely" moments? Because it had to happen, and my whole family will one day become stronger because of it.
8. On Saturday, we managed a little birthday party for my sister and Mary Poppins, with Toby, our resident Birthday King, blowing out the candles and opening their presents in the expert way only he can. Thornton's Toffee cake is honestly the very best there is.
Then since Friday evening, I've been back hibernating through the awfulness of chemo hell, but today it's just beginning to lift. It better had quickly because I think I'm the only person in the country who hasn't given a thought to Christmas yet, so thank goodness for Amazon and Internet shopping - I'm intending to hit the virtual high streets in my pyjamas!
Monday, 19 November 2012
Adventures with breast cancer: Onward and upwards
Adventures with breast cancer: Onward and upwards: It's Monday morning, the start of what I hope will be a really good week. This time last week I thought I was at death's door with the chemo...
Onward and upwards
It's Monday morning, the start of what I hope will be a really good week. This time last week I thought I was at death's door with the chemo side effects, life was not up to much at all. Then, from about Wednesday onwards, the side effects largely melted away, and somehow left me with more energy and wellness than I've had for months. Maybe it's the extreme contrasts between the good days and the bad days, but on the good days lately, everything just seems to be bursting with colour, music, happiness and life.
Last week, I did the first of many Laughter sessions at Mencap, and it was a really good one. No one had been before, but the group really gelled well together and within seconds everyone was laughing like crazy. Laughing for a whole hour is fairly exhausting, but in a very energising way, and the health benefits are really worth having. It's excellent cardio-vascular exercise, the deep breathing that laughter causes really does get the oxygen in and circulating well in the body, the eye-contact and human connection that all the laughter exercises encourage has a very positive effect on self-esteem and confidence, and the whole thing has a tangible "feel-good" factor.
I'm having another session at my house tomorrow evening, and then hosting a session for the Mencap staff on Thursday morning, so at least this one should be a very happy week. Then next week, if chemo side effects allow it, I'm back in training to take my laughter skills up to the next level, which will enable me to offer one-to-one laughter sessions in a much more theraputic way. This will open up all sorts of opportunities to work with people who are housebound, and it lends itself very nicely to Skype, so I can be housebound too! The new training will also enable me to offer 8-week work based courses too, for team building and productivity purposes, but I think that will have to wait until I've completely kicked this cancer into submission.
It's a bit risky signing up for a course in the middle of chemo, but I'm keeping all my fingers and toes crossed. Next week, because I'm starting Herceptin on Monday, chemo won't happen til Tuesday. The course is in St Albans on Thursday. Normally side effects kick in on day 3, so I'm hoping I'll get away with it, but we'll just have to see.
The other highlight of this week was drama, where we began in earnest to adapt this blog for the stage. It was both hilarious, and quite surreal to see other people playing my dad and WM, and hearing from the rest of the group about what bits of the blog they feel are important. I had a bit of a surprise when I realised that, so far, I've already written 39,000 words, so unless we keep the audience in their seats for several weeks at a time, we'll have to take far more out than we leave in.
All this means that I'm having to revisit the blog and reread it all taking copious notes. It's quite strange going back over the past few months, and trying to analyse what it might mean to other people, and how best to portray it. What has struck me is that is seems to be a series of conflicts being fought out in my very being and messing with my head, like what I need to eat versus what I want to eat, what I want to do versus what I need to do, turning up for painful treatment after painful treatment versus running away to Barbados, and most of all, the onward march of the cancer cells versus all the medical weaponary and my own immune system trying to capture them and stop them in their tracks. Whenever I think of those cancer cells on the march I somehow end up singing the Dad's Army theme tune in my head, with an image of the German flag crossing the channel.
It's also making me realise that whether I like it or not, this cancer stuff is subtley changing me too. I can't quite put things into words yet, but I suppose something this big and intrusive in my life is bound to make me look at the world differently. That in itself can be quite isolating, because I'm tuned in differently at the moment to life and seeing things from a slightly different angle, whereas everyone else in my world is just getting on with their lives in a way that I'm unable to in quite the same way for the moment.
I've also had enough energy to tackle a big supermarket shop, and even to half clean the kitchen. Mind you it took ages, I kept having to sit down to get my breath back, and I finally flopped halfway through, but it's a step in the right direction.
The major issues with two of the children are still as pressing and as worrying as ever, which inevitably is taking a lot of time and energy too, but they are both far more important than a clean kitchen, so they are rightfully taking priority over everything else, and it's painfully apparent that I'm not able to drive both situations in the direction that's needed as quickly as I need to.
The other thoughts that are beginning to filter in concern my hideously disfigured body. The 12-inch shark-bite style scar that slashes across the place I used to have a second boob is something I can only deal with by tuning out completely. Then I have to take on board the bald head coupled with the missing eyebrows and eyelashes - altogether not the greatest look ever. The last lot will grow back, but do I want to go through the whole big issue of a breast reconstruction once all the treatment has finished? I really can't get my head around that one. At some point next year I'll probably lose my other boob too, that is part of the plan, but do I want to put myself through yet more major operations, with all their potential side effects, just so I get a cleavage to flaunt to the world again? The bit of the operation I'm quite keen on is the tummy-tuck - they would have to dig out masses of tissue from my very ample tummy to make new boobies, so I'd have a nice flat wash-board belly, but I doubt if Mr Lovely would agree to just that bit and then foregoing the sticking the belly fat where the boob should be bit. I get to see Mr Lovely early next month and I think we'll need to sit down and talk about it all. Sitting down and talking to Mr Lovely will be lovely, and if I do decide to go ahead with new boobies, I'll get to do a lot of that in the next few months, I'm sure.
This week is also the week where I'll start to plan Christmas. I'm seriously considering delaying Christmas Day by 3 or 4 days if my kids will agree, so I can take advantage of the best chemo side-effect days. Don't tell them, but I might even get their presents much cheaper in the after-Christmas sales too!
So, there's a lot going on, things to think about, things to do, and even a few projects on the go, exactly how I like life to be, and letting the cancer know, once again, who is really in charge. Onwards and upwards, it's going to be a good week.
Last week, I did the first of many Laughter sessions at Mencap, and it was a really good one. No one had been before, but the group really gelled well together and within seconds everyone was laughing like crazy. Laughing for a whole hour is fairly exhausting, but in a very energising way, and the health benefits are really worth having. It's excellent cardio-vascular exercise, the deep breathing that laughter causes really does get the oxygen in and circulating well in the body, the eye-contact and human connection that all the laughter exercises encourage has a very positive effect on self-esteem and confidence, and the whole thing has a tangible "feel-good" factor.
I'm having another session at my house tomorrow evening, and then hosting a session for the Mencap staff on Thursday morning, so at least this one should be a very happy week. Then next week, if chemo side effects allow it, I'm back in training to take my laughter skills up to the next level, which will enable me to offer one-to-one laughter sessions in a much more theraputic way. This will open up all sorts of opportunities to work with people who are housebound, and it lends itself very nicely to Skype, so I can be housebound too! The new training will also enable me to offer 8-week work based courses too, for team building and productivity purposes, but I think that will have to wait until I've completely kicked this cancer into submission.
It's a bit risky signing up for a course in the middle of chemo, but I'm keeping all my fingers and toes crossed. Next week, because I'm starting Herceptin on Monday, chemo won't happen til Tuesday. The course is in St Albans on Thursday. Normally side effects kick in on day 3, so I'm hoping I'll get away with it, but we'll just have to see.
The other highlight of this week was drama, where we began in earnest to adapt this blog for the stage. It was both hilarious, and quite surreal to see other people playing my dad and WM, and hearing from the rest of the group about what bits of the blog they feel are important. I had a bit of a surprise when I realised that, so far, I've already written 39,000 words, so unless we keep the audience in their seats for several weeks at a time, we'll have to take far more out than we leave in.
All this means that I'm having to revisit the blog and reread it all taking copious notes. It's quite strange going back over the past few months, and trying to analyse what it might mean to other people, and how best to portray it. What has struck me is that is seems to be a series of conflicts being fought out in my very being and messing with my head, like what I need to eat versus what I want to eat, what I want to do versus what I need to do, turning up for painful treatment after painful treatment versus running away to Barbados, and most of all, the onward march of the cancer cells versus all the medical weaponary and my own immune system trying to capture them and stop them in their tracks. Whenever I think of those cancer cells on the march I somehow end up singing the Dad's Army theme tune in my head, with an image of the German flag crossing the channel.
It's also making me realise that whether I like it or not, this cancer stuff is subtley changing me too. I can't quite put things into words yet, but I suppose something this big and intrusive in my life is bound to make me look at the world differently. That in itself can be quite isolating, because I'm tuned in differently at the moment to life and seeing things from a slightly different angle, whereas everyone else in my world is just getting on with their lives in a way that I'm unable to in quite the same way for the moment.
I've also had enough energy to tackle a big supermarket shop, and even to half clean the kitchen. Mind you it took ages, I kept having to sit down to get my breath back, and I finally flopped halfway through, but it's a step in the right direction.
The major issues with two of the children are still as pressing and as worrying as ever, which inevitably is taking a lot of time and energy too, but they are both far more important than a clean kitchen, so they are rightfully taking priority over everything else, and it's painfully apparent that I'm not able to drive both situations in the direction that's needed as quickly as I need to.
The other thoughts that are beginning to filter in concern my hideously disfigured body. The 12-inch shark-bite style scar that slashes across the place I used to have a second boob is something I can only deal with by tuning out completely. Then I have to take on board the bald head coupled with the missing eyebrows and eyelashes - altogether not the greatest look ever. The last lot will grow back, but do I want to go through the whole big issue of a breast reconstruction once all the treatment has finished? I really can't get my head around that one. At some point next year I'll probably lose my other boob too, that is part of the plan, but do I want to put myself through yet more major operations, with all their potential side effects, just so I get a cleavage to flaunt to the world again? The bit of the operation I'm quite keen on is the tummy-tuck - they would have to dig out masses of tissue from my very ample tummy to make new boobies, so I'd have a nice flat wash-board belly, but I doubt if Mr Lovely would agree to just that bit and then foregoing the sticking the belly fat where the boob should be bit. I get to see Mr Lovely early next month and I think we'll need to sit down and talk about it all. Sitting down and talking to Mr Lovely will be lovely, and if I do decide to go ahead with new boobies, I'll get to do a lot of that in the next few months, I'm sure.
This week is also the week where I'll start to plan Christmas. I'm seriously considering delaying Christmas Day by 3 or 4 days if my kids will agree, so I can take advantage of the best chemo side-effect days. Don't tell them, but I might even get their presents much cheaper in the after-Christmas sales too!
So, there's a lot going on, things to think about, things to do, and even a few projects on the go, exactly how I like life to be, and letting the cancer know, once again, who is really in charge. Onwards and upwards, it's going to be a good week.
Sunday, 11 November 2012
Adventures with breast cancer: Hibernation
Adventures with breast cancer: Hibernation: Sometimes this cancer thing really does creep up and knock me for six, never more so than in the past three days where I've been virtually b...
Hibernation
Sometimes this cancer thing really does creep up and knock me for six, never more so than in the past three days where I've been virtually bed-bound with feeling absolutely awful. The chemo side-effects of this cycle have been totally overwhelming, and I just haven't been able to fight it at all. Every bone aches like crazy, and even the strongest pain-killers only lift the edge of it. I'm moving around as if I'm 103, and the pain jumps unexpectedly from one bone to the next, like some really high-tech laser light show. Then all my finger and toe nail beds have become a bit loose, and even the slightest pressure hurts like mad. Typing like I'm doing now really isn't much fun at all. All I can do is lie in bed most of the time, and I haven't even got the energy to adjust the duvet if there's a bit of a cold draught. Then on top of all of that, the killer runs started overnight, and I spent most of the night on the loo feeling extremely ill. The soles of my feet have blistered, so walking is very slow and painful, and my tongue has swollen, is really sore, and making eating and drinking a real ordeal. This evening, the skin in my mouth has started to peel as well, which gets stuck in an already very sore throat, so I feel like I'm choking.
Then there's the total exhaustion, sleeping is all I want to do, but a lot of the time the pain just keeps me awake, so I just can't sleep. Instead, all sorts of thoughts flit across my brain, and annoyingly, the good ones seem to pass by and I can never quite collect them properly.
It's when I feel this ill, which has only happened a couple of times during this six-month-long adventure, that I start to actually believe that I'm not going to make it. Depression is lurking as an ever-present threat, but I haven't let it take hold yet, and will do everything I can to stave it off at the moment.
Depression is the real enemy with cancer, and although it's fine to have the odd day when things just don't seem too great, full-blown depression is something that I'm determined to guard against. There is so much research that show that people who remain hopeful are more likely to survive, and I know that mental attitude is every bit as important as the pharmaceutical weaponary that's being used to save my life.
So I don't like the side-effects of chemo, but I have to remember that I absolutely love chemo itself. If it's doing this to me, it must be really obliterating any stray little cancer cells into oblivion. It's giving me a real fighting chance of being around to meet the grandchildren, and for me, the only way to deal with the difficult bits of chemo is to just remember that this is transient, and it's doing me stacks of good. Gratitude as well helps - 30 years ago there simply wasn't the technology to save my life, and even today, in many parts of the world, this sort of treatment simply wouldn't be available to me.
So, I'm trying to regard what I'm currently dealing with as a very precious few days of hibernation. A chance to just stop, shut-down from real-life for a few days, with a chance to perhaps think and plan too, and to count my blessings.
A lovely piece of research I read yesterday really did bring this into focus. Women with breast cancer, who also have a strong social connection with friends, family and community, have a staggering 61% better survival rate that those who are socially isolated. If that's the case, then I'm virtually home and dry, because my friends and family have really stepped up to this challenge, and have carried me through the past few months with continuous love, support and laughter. WM though, deserves a very special mention. He is doing everything for me, and everything for my kids that I can't do at the moment, always with good grace, patience and humour. I have to get through this, and out healthy on the other side, just so that somehow, I may get a chance to make it all up to him.
Then there's the total exhaustion, sleeping is all I want to do, but a lot of the time the pain just keeps me awake, so I just can't sleep. Instead, all sorts of thoughts flit across my brain, and annoyingly, the good ones seem to pass by and I can never quite collect them properly.
It's when I feel this ill, which has only happened a couple of times during this six-month-long adventure, that I start to actually believe that I'm not going to make it. Depression is lurking as an ever-present threat, but I haven't let it take hold yet, and will do everything I can to stave it off at the moment.
Depression is the real enemy with cancer, and although it's fine to have the odd day when things just don't seem too great, full-blown depression is something that I'm determined to guard against. There is so much research that show that people who remain hopeful are more likely to survive, and I know that mental attitude is every bit as important as the pharmaceutical weaponary that's being used to save my life.
So I don't like the side-effects of chemo, but I have to remember that I absolutely love chemo itself. If it's doing this to me, it must be really obliterating any stray little cancer cells into oblivion. It's giving me a real fighting chance of being around to meet the grandchildren, and for me, the only way to deal with the difficult bits of chemo is to just remember that this is transient, and it's doing me stacks of good. Gratitude as well helps - 30 years ago there simply wasn't the technology to save my life, and even today, in many parts of the world, this sort of treatment simply wouldn't be available to me.
So, I'm trying to regard what I'm currently dealing with as a very precious few days of hibernation. A chance to just stop, shut-down from real-life for a few days, with a chance to perhaps think and plan too, and to count my blessings.
A lovely piece of research I read yesterday really did bring this into focus. Women with breast cancer, who also have a strong social connection with friends, family and community, have a staggering 61% better survival rate that those who are socially isolated. If that's the case, then I'm virtually home and dry, because my friends and family have really stepped up to this challenge, and have carried me through the past few months with continuous love, support and laughter. WM though, deserves a very special mention. He is doing everything for me, and everything for my kids that I can't do at the moment, always with good grace, patience and humour. I have to get through this, and out healthy on the other side, just so that somehow, I may get a chance to make it all up to him.
Thursday, 25 October 2012
Laughing, fundraising, scriptwriting and fog
The worst part of chemotherapy for me is the total, bone-deep exhaustion, that just makes everything seem like such hard work that I end up doing virtually nothing, then constantly beat myself up about it. It's like being overwhelmed by a blanket of thick fog, and to then try and reach out beyond the fog is like climbing Everest, backwards, in ballet shoes, but harder. Staring into the mid-distance is about all I'm good for at the moment, which is incredibly frustrating, when there are so many things just not getting done.
Never mind, I do have breast cancer, and that means people are generally ever so forgiving. Hopefully it won't always be like this, but all I want to do all day is crawl back into bed, but don't, mostly for two reasons. Firstly I just don't have the energy to make the go-back-to-bed decision, and secondly, when I do managed to get back under the duvet, all I do is worry about everything that isn't getting done.
I really shouldn't be moaning about the chemotherapy side efffects, because the side effects of not having chemotherapy are a great deal worse, with death being one of them. It's the cancer treatment, rather than the cancer itself that makes you feel like pants. If I have all this treatment and still end up popping my clogs, I have totally promised myself that I will come back and haunt whoever is was who invented chemotherapy. They won't be the only ones..... I can have a lot of fun compiling my "people I intend to haunt" list. Please let me know if there's anyone you'd like me to add to the list.
Last night I watched a TV programme which really made my list grow longer - all brand new, young junior doctors. They were all probably lovely, well meaning lads and lasses, with their hearts in the right places, but their arrogance and their ability to patronise were just staggeringly shocking. The documentary, following 8 doctors in their first week out of medical school did seem to focus on a particular sore-point of my own, putting canulas in and taking blood out, but their lack of understanding, patience and compassion was quite simply apppalling. Their priorities seemed to be more about making their mark and earning the respect of their new colleagues than really beginning to understand how their patients felt. There were moments when I wanted to shout at the telly, advocating for the poor patients being used as practice guinea pigs by these youngsters who really didn't know what they were doing yet. One poor old lady who was just at the end of her tether at being used like a pincushion, refused any more. She was later referred to as being "difficult and princessy", which really made me quite cross.
I have to say that , almost without exception, all the doctors I've met in the cancer unit I attend have been incredibly sympathetic about my needle phobia, so I think I'm very lucky indeed. I wonder what they really say to each other, and in my case, I'm sure some of them might be tempted to use significantly stronger adjectives than "difficult and princessy". Unless of course it was Mr Lovely, who I'm sure, wouldn't ever say anything negative about anybody.
Despite the tiredness, I have got a couple of rather exciting projects on the go at the moment, one, of course, being to do lots of thinking about how to turn this blog into a play script, because a dramatized version will be performed next May at the Brighton Fringe. In my mind there is only one casting option with enough charm and warmth to portray the lovely Mr Lovely, but I doubt we could afford George Clooney.
The other exciting project got off the ground only yesterday. Our local Mencap organisation needs to raise £20,000 for a new sensory room. Mencap is an amazing place, offering fabulous opportunities to local learning disabled children and adults. My very learning disabled son, Toby, has been a regular there since he was only 5 years old, and I can truly say that it is probably his favourite place on the planet. The whole ethos just centres around fun and nothing is too much trouble for them if it means raising yet another smile or giggle from some of our most vulnerable people.
Although National Mencap is a high-profile and very respected charity, each of the local branches are independent, separate, stand-alone charities, responsible entirely for their own fund-raising. They just don't have the clout or the appeal of other charities, and sadly, not everyone can identify with learning disability in the same way they can with many other charities, so donations don't exactly come in thick and fast.
Just a few weeks before I was diagnosed with breast cancer, I trained as a Laughter Yoga Leader, so I haven't been able to really focus on building up a laughter business. I do sessions at home for friends and family on an informal basis, but as far as organising venues and running regular classes goes, there just hasn't been the energy to even think that far ahead.
Yesterday I met with two of the local Mencap managers, and offered to run a series of Laughter Yoga sessions on their premises with all the proceeds going to the sensory room appeal. There was so much good will and enthusiasm, and we have a taster already booked for next month, carefully timed around my best chemo days, with a full programme of sessions to run straight after Christmas. I am so excited! It is so nice to still get on with other things that don't have "I have cancer" running right through the middle, and it will be brilliant to be able to contribute to an organisation that have really supported my family over the years. They are doing all the publicity and organising the room, all I have to do is turn up and run a session. We also talked about me running sessions with their learning disabled clients, which could be so rewarding, and maybe even working with local care homes. As a really thoughtful gesture, their Fundraising Manager has even offered to help me get started properly once I'm finished with treatment and the time is right. Will that ever happen??! Of course it will!
We'll be asking for small donations of between £3.00 and £5.00 for each session, so if you think you'd like to contribute something but can't make the sessions themselves, even a few pennies would help tremendously. Here's a link to their "Just Giving" page:
So with scriptwriting and laughtering, at least I won't have too much time to dwell on boring stuff like having cancer. Cancer does get very boring indeed and it does seem to go on for flipping ever. It's OK though, because right now I just don't have enough energy for too much excitement, so boring sort of suits me right down to the ground.
Never mind, I do have breast cancer, and that means people are generally ever so forgiving. Hopefully it won't always be like this, but all I want to do all day is crawl back into bed, but don't, mostly for two reasons. Firstly I just don't have the energy to make the go-back-to-bed decision, and secondly, when I do managed to get back under the duvet, all I do is worry about everything that isn't getting done.
I really shouldn't be moaning about the chemotherapy side efffects, because the side effects of not having chemotherapy are a great deal worse, with death being one of them. It's the cancer treatment, rather than the cancer itself that makes you feel like pants. If I have all this treatment and still end up popping my clogs, I have totally promised myself that I will come back and haunt whoever is was who invented chemotherapy. They won't be the only ones..... I can have a lot of fun compiling my "people I intend to haunt" list. Please let me know if there's anyone you'd like me to add to the list.
Last night I watched a TV programme which really made my list grow longer - all brand new, young junior doctors. They were all probably lovely, well meaning lads and lasses, with their hearts in the right places, but their arrogance and their ability to patronise were just staggeringly shocking. The documentary, following 8 doctors in their first week out of medical school did seem to focus on a particular sore-point of my own, putting canulas in and taking blood out, but their lack of understanding, patience and compassion was quite simply apppalling. Their priorities seemed to be more about making their mark and earning the respect of their new colleagues than really beginning to understand how their patients felt. There were moments when I wanted to shout at the telly, advocating for the poor patients being used as practice guinea pigs by these youngsters who really didn't know what they were doing yet. One poor old lady who was just at the end of her tether at being used like a pincushion, refused any more. She was later referred to as being "difficult and princessy", which really made me quite cross.
I have to say that , almost without exception, all the doctors I've met in the cancer unit I attend have been incredibly sympathetic about my needle phobia, so I think I'm very lucky indeed. I wonder what they really say to each other, and in my case, I'm sure some of them might be tempted to use significantly stronger adjectives than "difficult and princessy". Unless of course it was Mr Lovely, who I'm sure, wouldn't ever say anything negative about anybody.
Despite the tiredness, I have got a couple of rather exciting projects on the go at the moment, one, of course, being to do lots of thinking about how to turn this blog into a play script, because a dramatized version will be performed next May at the Brighton Fringe. In my mind there is only one casting option with enough charm and warmth to portray the lovely Mr Lovely, but I doubt we could afford George Clooney.
The other exciting project got off the ground only yesterday. Our local Mencap organisation needs to raise £20,000 for a new sensory room. Mencap is an amazing place, offering fabulous opportunities to local learning disabled children and adults. My very learning disabled son, Toby, has been a regular there since he was only 5 years old, and I can truly say that it is probably his favourite place on the planet. The whole ethos just centres around fun and nothing is too much trouble for them if it means raising yet another smile or giggle from some of our most vulnerable people.
Although National Mencap is a high-profile and very respected charity, each of the local branches are independent, separate, stand-alone charities, responsible entirely for their own fund-raising. They just don't have the clout or the appeal of other charities, and sadly, not everyone can identify with learning disability in the same way they can with many other charities, so donations don't exactly come in thick and fast.
Just a few weeks before I was diagnosed with breast cancer, I trained as a Laughter Yoga Leader, so I haven't been able to really focus on building up a laughter business. I do sessions at home for friends and family on an informal basis, but as far as organising venues and running regular classes goes, there just hasn't been the energy to even think that far ahead.
Yesterday I met with two of the local Mencap managers, and offered to run a series of Laughter Yoga sessions on their premises with all the proceeds going to the sensory room appeal. There was so much good will and enthusiasm, and we have a taster already booked for next month, carefully timed around my best chemo days, with a full programme of sessions to run straight after Christmas. I am so excited! It is so nice to still get on with other things that don't have "I have cancer" running right through the middle, and it will be brilliant to be able to contribute to an organisation that have really supported my family over the years. They are doing all the publicity and organising the room, all I have to do is turn up and run a session. We also talked about me running sessions with their learning disabled clients, which could be so rewarding, and maybe even working with local care homes. As a really thoughtful gesture, their Fundraising Manager has even offered to help me get started properly once I'm finished with treatment and the time is right. Will that ever happen??! Of course it will!
We'll be asking for small donations of between £3.00 and £5.00 for each session, so if you think you'd like to contribute something but can't make the sessions themselves, even a few pennies would help tremendously. Here's a link to their "Just Giving" page:
http://www.justgiving.com/suttonmencap
Wednesday, 10 October 2012
Adventures with breast cancer: The cancer photo-shoot
Adventures with breast cancer: The cancer photo-shoot: Anita came over last night and wielded a camera to capture for posterity my newly acquired eclectic collection of crazy hats, and she is ...
The cancer photo-shoot
Anita came over last night and wielded a camera to capture for posterity my newly acquired eclectic collection of crazy hats, and she is the only person I've ever met who can take a photo of me that might not frighten small children. They say that cancer changes people, and it has already made me much more confident to be a bit eccentric in a hat-wearing sort of way, and I thought you might like to meet them!
Another purple one but with a Donny O theme again
Next, some photos of the wig, which I'm loving more and more and getting stacks of compliments about. The other day in Tesco I bumped into someone I hadn't seen for over a year, and first thing she says is "Oh Yvonne, your hair looks fabulous!". Now most people would have a little dignity, and say "Thank you, you are most kind". Not me I'm afraid. Instead I went "Ooh, do you really think so, you'll never guess, but it's a WIG! I've got breast cancer!" as though having the BC is the most excitingly marvellous thing that could happen to anyone. I think the whole shop, and maybe even those in the street outside, heard me, and must have thought "She's a totally crazy, unhinged madwoman". A few months ago I'd have wanted the ground to swallow me up in embarrassment, but now, with this new freedom that cancer has somehow given me, I just let my newly-found eccentricity have a little bit of party-fun.
Back to the wig - can't you just see why I love it! Two pictures of the front this time, and one of the side so you can see just what a fabulous cut they gave it.
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I still haven't had many opportunities to wear it yet, and I'm slowly building up tolerance so that today I managed 3 full hours before it started to get hot and itchy. The one thing that is a bit annoying is that if a stray hair ends up in my eyes, because it's made of nylon it feels as sharp as a needle. It's a small price to pay for having completely hassle-free low-maintenance fabulous hair for the first time ever!
The last photo turns the table on my lovely, kind, talented, intelligent, witty friend Anita, and isn't she just gorgeous too?!
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| Bright purple, like the lady in the poem |
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| A favourite - but hope I don't look like a lampshade |
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| I love it so much that it deserves 2 photos |
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| Hardly the most flattering - more like Benny from Crossroads |
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| First I bought some turquoise shoes, then found a matching bag, and now I've got the hat..... is there a T-shirt too, I wonder? |
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| This is my "look she's got cancer" hat, and Anita wanted me doing belly-dance moves to match the turban style - or is it because I already have the perfect belly-dance physique? |
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| When you get cancer, you're somehow expected to wear scarves, but the having surgery in both armpits malarkey makes it very difficult to tie them at the back without blindfolding yourself |
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| This one is perfectly ridiculous but beautifully brightly multicoloured, and shows me for what I really am at heart - a Donny Osmond teenybopper |
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| This one really shows off Anita's photographic genius - a naked-headed photo that I'm happy to go public with |
Another purple one but with a Donny O theme again
Next, some photos of the wig, which I'm loving more and more and getting stacks of compliments about. The other day in Tesco I bumped into someone I hadn't seen for over a year, and first thing she says is "Oh Yvonne, your hair looks fabulous!". Now most people would have a little dignity, and say "Thank you, you are most kind". Not me I'm afraid. Instead I went "Ooh, do you really think so, you'll never guess, but it's a WIG! I've got breast cancer!" as though having the BC is the most excitingly marvellous thing that could happen to anyone. I think the whole shop, and maybe even those in the street outside, heard me, and must have thought "She's a totally crazy, unhinged madwoman". A few months ago I'd have wanted the ground to swallow me up in embarrassment, but now, with this new freedom that cancer has somehow given me, I just let my newly-found eccentricity have a little bit of party-fun.
Back to the wig - can't you just see why I love it! Two pictures of the front this time, and one of the side so you can see just what a fabulous cut they gave it.
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I still haven't had many opportunities to wear it yet, and I'm slowly building up tolerance so that today I managed 3 full hours before it started to get hot and itchy. The one thing that is a bit annoying is that if a stray hair ends up in my eyes, because it's made of nylon it feels as sharp as a needle. It's a small price to pay for having completely hassle-free low-maintenance fabulous hair for the first time ever!
The last photo turns the table on my lovely, kind, talented, intelligent, witty friend Anita, and isn't she just gorgeous too?!
If you’d like to buy a copy of Yvonne Newbold's book, “The Special Parent’s Handbook”, here’s the link to the Amazon Page:
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Monday, 24 September 2012
Dreading today
Just a very quick post today because I should be rushing about to get to the hospital for my second chemotherapy - I've got 50 minutes to shower, get dressed and get there so it's a bit of a tight timescale.
Friday was a very difficult day, my GP was concerned that this constant, awful chest pain might be a Pulmonary Embolism, which was a very scary thought at the time. I was sent up to our local general hospital, not the fabulous place where my cancer is being treated where I get overwhelmed by kindness. On no, kindness is in a bit of a short supply at the general. They do their best, they don't mean any harm, but it felt like I was being processed rather than cared for.
So nine hours of clunky, unjoined-up incompetence later, where they seemed to spend the whole day trying to open veins to get blood and put other stuff into me, because they don't have the necessary know-how to use my portacath. I have deep purple bruises all over the place due to their botched attempts, and they eventually managed to take blood from my groin - incredibly painful.
I don't have a Pulmonary Embolism, thank goodness, but they don't really know what is causing this constant pain and breathlessness. So I came home with antibiotics, on a just in case basis, and I'm hoping that today, the the lovely hospital, they might be able to find the cause. Of course, my deepest dread is that it is the spread of the cancer.
Anyone who knows how needle phobic I am (there is a post devoted to my intense fear on this blog "My Needle Phobic Past) may have some sort of an inkling as to how traumatic I found the whole of Friday to be. It has affected my whole weekend, and dark, depressing thoughts, despair, and complete self-pitying sobbing have just taken me over. I've had thoughts of calling a day to this whole cancer treatment because I just don't know how much more of this whole stuff I can take, and just letting nature take it's course. Of course I won't, I have far too much to live for and will continue to do everything I can to come out well the other side, but for the first time since this was diagnosed four months ago, I completely lost hope this weekend. My reasoning was, if I'm going to die anyway, why put myself through all this awful stuff and ruin my last few months?
I kept busy though, and those of you who know how stressed out about the every growing mountain of admin will understand how delighted I am to have cleared 6 whole bits of it. I also watched Downton Abbey, which can cheer anyone up, even me at my worst.
I don't know what today will bring, I'm wondering if they will actually go ahead with the chemo, or if they will try to find the source of this pain instead. I'd like them to do both!
Once today is over, I'll get back to where I was, I'm sure, and be bubbling all over again with gung-ho optimisim that this cancer is on it's way out, because I really can't bear any more misery.
My hair now looks ridiculous - but I need to show the oncologist how it is to prove that the last chemo actually worked! So maybe we'll celebrate getting through today with shaving it all off so I can get down to the serious business of looking fabulously gorgeous in my new wig from tomorrow!
Friday was a very difficult day, my GP was concerned that this constant, awful chest pain might be a Pulmonary Embolism, which was a very scary thought at the time. I was sent up to our local general hospital, not the fabulous place where my cancer is being treated where I get overwhelmed by kindness. On no, kindness is in a bit of a short supply at the general. They do their best, they don't mean any harm, but it felt like I was being processed rather than cared for.
So nine hours of clunky, unjoined-up incompetence later, where they seemed to spend the whole day trying to open veins to get blood and put other stuff into me, because they don't have the necessary know-how to use my portacath. I have deep purple bruises all over the place due to their botched attempts, and they eventually managed to take blood from my groin - incredibly painful.
I don't have a Pulmonary Embolism, thank goodness, but they don't really know what is causing this constant pain and breathlessness. So I came home with antibiotics, on a just in case basis, and I'm hoping that today, the the lovely hospital, they might be able to find the cause. Of course, my deepest dread is that it is the spread of the cancer.
Anyone who knows how needle phobic I am (there is a post devoted to my intense fear on this blog "My Needle Phobic Past) may have some sort of an inkling as to how traumatic I found the whole of Friday to be. It has affected my whole weekend, and dark, depressing thoughts, despair, and complete self-pitying sobbing have just taken me over. I've had thoughts of calling a day to this whole cancer treatment because I just don't know how much more of this whole stuff I can take, and just letting nature take it's course. Of course I won't, I have far too much to live for and will continue to do everything I can to come out well the other side, but for the first time since this was diagnosed four months ago, I completely lost hope this weekend. My reasoning was, if I'm going to die anyway, why put myself through all this awful stuff and ruin my last few months?
I kept busy though, and those of you who know how stressed out about the every growing mountain of admin will understand how delighted I am to have cleared 6 whole bits of it. I also watched Downton Abbey, which can cheer anyone up, even me at my worst.
I don't know what today will bring, I'm wondering if they will actually go ahead with the chemo, or if they will try to find the source of this pain instead. I'd like them to do both!
Once today is over, I'll get back to where I was, I'm sure, and be bubbling all over again with gung-ho optimisim that this cancer is on it's way out, because I really can't bear any more misery.
My hair now looks ridiculous - but I need to show the oncologist how it is to prove that the last chemo actually worked! So maybe we'll celebrate getting through today with shaving it all off so I can get down to the serious business of looking fabulously gorgeous in my new wig from tomorrow!
Wednesday, 19 September 2012
Pulling my hair out
The hair has to go, and very quickly. The Lovely Mr Lovely has sent me a copy of a letter he has sent to my equally lovely Chemo guru, suggesting that, since I seemed to have very little in the way of post-chemotherapy symtoms, perhaps I was under-dosed. Everyone I've told about this seems to think it's hilariously funny, but I really don't want a double dose next week, so I need to be a bald as a coot to prove that my little cancer cells have been sufficiently ravaged by it.
So, everyone at home is completely grossed out by my new addictive habit of tugging handfuls of hair out. Personally, I find it fascinating, it's just so wierd to run my hands through my hair and loads of it coming away. This has been going on now for two whole days, and despite the fact that I feel like I've pulled away enough to stuff a couple of cushions, I actually still look like I have a whole head of perfectly copious hair. I have to wear a hat when I go out now, just in case it all suddenly decides to go out, and my kids won't let me cook their food at the moment in case I moult all over their dinner. So poor WM is on chef duty in our kitchen this week, which beautifully lets me off the hook.
Losing your hair is supposed to be one of the most traumatic parts of having cancer, so I've surprised even myself by how much I'm enjoying it so far. But that's the funny thing about this disease - things you think will hit you hard just don't, and things you think you'll take totally in your stride can send you over the edge into a dark black pit of misery. Both can happen too; maybe in a day or two I'll find the whole bald number heartbreaking, but I'm nowhere near there yet.
I heard a theory about cancer patients this week, that they fall into two distinct catergories, the Tiggers and the Eeyores. I think I'm mostly Tigger with the odd moment when Eeyore pops his head up and overwhelms me with misery, but luckily that doesn't happen often, and when it does, it doesn't last very long.
This last week, the misery has mostly been miles away. It's been a lovely week, I've had absolutely no hospital or any other appointments, I've felt reasonably well - certainly well enough to go out to dinner three times and to engage in a touch of retail therapy too. I've even driven the car for only the second time in three months, and the mastectomy scar is sufficiently healed to tolerate a seat belt. I've experimented with new underwear and I've found a bra make that holds the falsie in place so securely and in the right place that I almost forget that it's not my own one.
WM let me help him choose a new car, I've spent stacks of time just chilling with all three of the children, catching up with friends, and just feeling relatively normal for the first time since early May. Downton Abbey's return is just the icing on this week's cake.
I wish I could shift the procrastination though. The to do list gets longer and longer with each passing day, and the house gets more and more untidy and dirty. I have energy galore for about 10 minutes in a burst, then I just flop. The admin and paperwork is now more of a mountain range than a single mountain, and if I'm not careful something that I really should have done but haven't is going to turn round and bite me on the bum very soon. I get to the stage where I don't even know where to start, and the starting is scary, because once I explore that pile I'll find all sorts of reasons to be consumed in guilt, and feel pants for the rest of the week.
Going back to chemo symptoms, I now don't think I got away completely scot-free. The first 10 days I was comprehensively washed out, and although the consuming gallons of water and fasting beforehand did the trick in terms of stopping me feeling sick, even walking from the kitchen to the front room seemed like a marathon. Eating is another marathon, I just don't register hunger, and the weight is falling off, not quite as quickly as the hair, but still pretty good. As well as the hair disappearing, my mouth feels like someone's taken sandpaper and razor blades to it, nothing tastes right, even my staple, my precious cups of tea, taste like the milk went off last year. The chest pain that arrived a few days after chemo hasn't subsided yet, and in a bad moment, despite the medical reassurance I've had, I convince myself that it's the cancer spreading. Hopefully it's just a little know rare side-effect, but I really wish it would bog-off somewhere else.
Somehow I've got to find the wherewithall to sort out the paperwork and the house. I bought myself a new present which arrived today, a Dyson vacuum cleaner. It's still in its box in the hallway, hopefully giving the impression to any new visitors that, OK, the house is a tip, but I'm just about to sort it out. We all have special talents, and mine definitely isn't housework, but once I get going with the Dyson, I'm hopefully going to be galvinised into action, if for no other reason than to clear up all my fallen hair. Otherwise my kids will never eat at home again.
My GP has summoned me to see him later this week, and I haven't a clue why, but something about wanting to talk about my current hospital treatment. Hopefully they haven't decided that my family has single-handedly bankrupted the NHS and I'm never to darken their doorstep again, but I'll let you know. I'm due to see their new trainee GP, who the receptionist enigmatically told me "He's very popular with the ladies". Maybe another Mr Lovely in the making? I'll let you know about that too.
I've got a few more days before Chemo episode 2 next week, so there's time to fit a lot of stuff in. Paperwork and cleaning, obviously, but also maybe a few good books and a some quiet nights in watching TV. Feeling fairly well, apart from this constant chest pain, is such a strange, but lovely, experience after all these months of feeling pants, that I've almost forgotten how to relax and enjoy. I'm sure, with a bit of practice, I'll get very good at it again soon. And if I don't, then I'll obviously need to practice it even more.
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