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/
Wednesday, 31 October 2012
Adventures with breast cancer: Soapboxes and Cosmetics
Adventures with breast cancer: Soapboxes and Cosmetics: I'm just starting to feel human again, and it's only 5 days before my next chemo, when they change the cocktail to Taxotere which, by all ac...
Soapboxes and Cosmetics
I'm just starting to feel human again, and it's only 5 days before my next chemo, when they change the cocktail to Taxotere which, by all accounts, is an absolute killer. I stupidly googled all about it earlier today, and from being merely frightened I'm now simply terrified. Taxotere is made from the needles of Yew trees, which sounds fairly innocuous, even for this needle-phobe. However the list of side effects seems to be as tall as the Yew tree itself, and some of them are pretty scary indeed. It sounds very clever in the way that it works, though, by blocking the cancer cell's ability to divide and grow, and whatever nasty things it does to me over the next few weeks I'll be hoping that those cancer cells are getting an even more miserable time of it.
All I can do is shut my eyes, hold my nose and jump into the deep end and keep swimming til I surface again. I had a great piece of advice this week, which was to treat this whole treatment process just as if it were a job. Except there isn't a "handing in your notice" option.
Debbie and Anita came over today, both such upbeat, happy people, and both left-handed ladies just like me. Three left-handers all in one room on Halloween as well, eh, but without our broomsticks? Once upon a time we'd have been burnt at the stake which would have left the world a much less jolly place. They are both coming to my laughter taster session at Mencap in a couple of weeks' time - with both of them there I really won't have to work hard at all to get the room rolling about in fits of laughter, all in all, a lovely afternoon, even though they did both tell me off for googling far to much for my own good.
Yesterday, I must have been feeling better because yet another news item managed to wind me up completely. There is a new Government-backed report that is claiming that the routine mammogram screening programme is "over-diagnosing" a significant number of women. Lots of people will read this and think it means that they are "mis-diagnosing" loads of ladies. They are not. They are claiming that, of every woman who's life is saved by having treatment, there are 3 others who have all the treatment thrown at them, but would not have died if they hadn't had it. What they fail to make crystal clear, though, is that there is no way of telling which of those four women desperately needs that treatment. The whole report reads like a piece of non-news, a load of tosh, where they seem to be suggesting that playing Russian Roulette is fine, and let's not treat them. Even worse, they are suggesting that the women themselves decide if they think they are in that 75% percent who might not need treatment.
At the moment of diagnosis, and for several weeks afterwards, women diagnosed with breast cancer are in shock, denial and completely disorientated. To ask them to make that sort of decision will allow many to percieve that this is their "get out of jail" card. Who really wants to go through cancer treatment? At that point in any woman's life, the temptation to walk away and kid yourself that you'll be okay is overwhelming at the best of times. This report could cause countless women to turn there back on treatment, with disastrous consequences.
Headlines that state that mammograms are causing 75% over-diagnosis will be misunderstood by a huge number of the wider population. Going for a mammogram isn't exactly like having a slice of yummy cake, and many thousands of women already choose not to turn up for their screening appointments. No one wants to have cancer, and there is still an almost superstitious belief that "if I don't go, no one can tell me I've got cancer, so I won't have it". What really happens of course, is that if they do have it and don't get checked early enough, by the time they can't ignore it any longer it may be too late to treat effectively. Surely this silly message is going to feed into this fear, and deter many more thousands of women from taking part in the screening programme? I'm not cynical enough to actually believe that this message has been released to save thousands on the NHS budget, but I can see why many people are thinking like this.
My own case, I hope will act as a salutory case to anyone reading who may be thinking about not bothering to get checked. If I hadn't gone for my routine mammogram (and I was sorely tempted not to bother) they wouldn't have found the two primary cancers, totally unrelated different types, one in each breast. Even on the day of surgery, the surgeon couldn't feel either of them, they were so deeply buried. The scans had shown them to both be tiny, very early stage, that hadn't yet spread. After two operations, including a mastectomy on one side, they found that both had spread, one of them was a whopping 14.4 centimetre spherical ball, and that cancer was already in 9 of my lymph nodes. I am now undergoing treatment with no guarantees of survival, yet I am in with a chance of beating this. If I hadn't gone, I would still be in blissful ignorance, but the cancers by now would have been spreading to loads of other organs, and within a few months I would have become incredibly ill, and it would have been too late to do much about it. Please please please never put off a mammogram, or any other cancer screening you might be offered.
Ranting over, but at least I'm well enough at the moment to stand on a soapbox. Well enough to be planning lunch tomorrow with WM and his sister and brother-in-law, well enough to have nearly contemplated going to the theatre tonight, and certainly well enough to watch a load of rubbish telly for the rest of the evening while WM loses his inhibitions shouting at the Chelsea/Man U match on the other TV.
Something else happened this week that made me feel a whole load better. I had probably the best hospital appointment ever - a place on the "Look Good, Feel Better" workshop on Monday. It's a charity specially for women with cancer, run by the cosmetics industry, and we were taught how to really use face products and make-up properly, with tricks of the trade about how to pencil in our missing eyebrows, and tone done the chemo-related sideburns that are developing when the hair is falling out of all the places it's supposed to be. For someone like me, who has studiously neglected any form of beauty treatment and avoids looking at my face in the mirror to prevent both fear and depression, this was a totally strange, but strangely pleasant experience. I'm now exfoliating, toning, cleansing and moisturising like the best of them. There were 8 of us in the workshop, with 5 really encouraging beauticians, all volunteers, doing a great job of making us feel like we count and matter, and can actually look quite reasonable most of the time.
There were two "best bits" for me. One of the beauticians is trained in wig-care, and he really kindly offered to cut the fringe for me so it doesn't go in my eyes all the time anymore. This means I can double the length of time I can wear it comfortably now. The other great treat was the goody bag, a huge cosmetics bag stuffed full of the sort of products I could never normally even think of being able to afford, and some of these things I wouldn't even have known how to use beforehand. It was also quite liberating to spend a couple of hours in a room with other bald ladies, and to feel totally OK and accepted. By the time it was ready to leave, my face was completely madeover, and even to my critical eye it seemed passable.
So, now there are even more reasons not to tackle that housework of mine, because I'll need to spend so much time at the bathroom mirror to keep up the good work!
All I can do is shut my eyes, hold my nose and jump into the deep end and keep swimming til I surface again. I had a great piece of advice this week, which was to treat this whole treatment process just as if it were a job. Except there isn't a "handing in your notice" option.
Debbie and Anita came over today, both such upbeat, happy people, and both left-handed ladies just like me. Three left-handers all in one room on Halloween as well, eh, but without our broomsticks? Once upon a time we'd have been burnt at the stake which would have left the world a much less jolly place. They are both coming to my laughter taster session at Mencap in a couple of weeks' time - with both of them there I really won't have to work hard at all to get the room rolling about in fits of laughter, all in all, a lovely afternoon, even though they did both tell me off for googling far to much for my own good.
Yesterday, I must have been feeling better because yet another news item managed to wind me up completely. There is a new Government-backed report that is claiming that the routine mammogram screening programme is "over-diagnosing" a significant number of women. Lots of people will read this and think it means that they are "mis-diagnosing" loads of ladies. They are not. They are claiming that, of every woman who's life is saved by having treatment, there are 3 others who have all the treatment thrown at them, but would not have died if they hadn't had it. What they fail to make crystal clear, though, is that there is no way of telling which of those four women desperately needs that treatment. The whole report reads like a piece of non-news, a load of tosh, where they seem to be suggesting that playing Russian Roulette is fine, and let's not treat them. Even worse, they are suggesting that the women themselves decide if they think they are in that 75% percent who might not need treatment.
At the moment of diagnosis, and for several weeks afterwards, women diagnosed with breast cancer are in shock, denial and completely disorientated. To ask them to make that sort of decision will allow many to percieve that this is their "get out of jail" card. Who really wants to go through cancer treatment? At that point in any woman's life, the temptation to walk away and kid yourself that you'll be okay is overwhelming at the best of times. This report could cause countless women to turn there back on treatment, with disastrous consequences.
Headlines that state that mammograms are causing 75% over-diagnosis will be misunderstood by a huge number of the wider population. Going for a mammogram isn't exactly like having a slice of yummy cake, and many thousands of women already choose not to turn up for their screening appointments. No one wants to have cancer, and there is still an almost superstitious belief that "if I don't go, no one can tell me I've got cancer, so I won't have it". What really happens of course, is that if they do have it and don't get checked early enough, by the time they can't ignore it any longer it may be too late to treat effectively. Surely this silly message is going to feed into this fear, and deter many more thousands of women from taking part in the screening programme? I'm not cynical enough to actually believe that this message has been released to save thousands on the NHS budget, but I can see why many people are thinking like this.
My own case, I hope will act as a salutory case to anyone reading who may be thinking about not bothering to get checked. If I hadn't gone for my routine mammogram (and I was sorely tempted not to bother) they wouldn't have found the two primary cancers, totally unrelated different types, one in each breast. Even on the day of surgery, the surgeon couldn't feel either of them, they were so deeply buried. The scans had shown them to both be tiny, very early stage, that hadn't yet spread. After two operations, including a mastectomy on one side, they found that both had spread, one of them was a whopping 14.4 centimetre spherical ball, and that cancer was already in 9 of my lymph nodes. I am now undergoing treatment with no guarantees of survival, yet I am in with a chance of beating this. If I hadn't gone, I would still be in blissful ignorance, but the cancers by now would have been spreading to loads of other organs, and within a few months I would have become incredibly ill, and it would have been too late to do much about it. Please please please never put off a mammogram, or any other cancer screening you might be offered.
Ranting over, but at least I'm well enough at the moment to stand on a soapbox. Well enough to be planning lunch tomorrow with WM and his sister and brother-in-law, well enough to have nearly contemplated going to the theatre tonight, and certainly well enough to watch a load of rubbish telly for the rest of the evening while WM loses his inhibitions shouting at the Chelsea/Man U match on the other TV.
Something else happened this week that made me feel a whole load better. I had probably the best hospital appointment ever - a place on the "Look Good, Feel Better" workshop on Monday. It's a charity specially for women with cancer, run by the cosmetics industry, and we were taught how to really use face products and make-up properly, with tricks of the trade about how to pencil in our missing eyebrows, and tone done the chemo-related sideburns that are developing when the hair is falling out of all the places it's supposed to be. For someone like me, who has studiously neglected any form of beauty treatment and avoids looking at my face in the mirror to prevent both fear and depression, this was a totally strange, but strangely pleasant experience. I'm now exfoliating, toning, cleansing and moisturising like the best of them. There were 8 of us in the workshop, with 5 really encouraging beauticians, all volunteers, doing a great job of making us feel like we count and matter, and can actually look quite reasonable most of the time.
There were two "best bits" for me. One of the beauticians is trained in wig-care, and he really kindly offered to cut the fringe for me so it doesn't go in my eyes all the time anymore. This means I can double the length of time I can wear it comfortably now. The other great treat was the goody bag, a huge cosmetics bag stuffed full of the sort of products I could never normally even think of being able to afford, and some of these things I wouldn't even have known how to use beforehand. It was also quite liberating to spend a couple of hours in a room with other bald ladies, and to feel totally OK and accepted. By the time it was ready to leave, my face was completely madeover, and even to my critical eye it seemed passable.
So, now there are even more reasons not to tackle that housework of mine, because I'll need to spend so much time at the bathroom mirror to keep up the good work!
Thursday, 25 October 2012
Adventures with breast cancer: Laughing, fundraising, scriptwriting and fog
Adventures with breast cancer: 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 ...
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
Friday, 19 October 2012
Adventures with breast cancer: Handbags, happiness, girls and cars
Adventures with breast cancer: Handbags, happiness, girls and cars: Yesterday, when I posted the episode called "Eating Toast and Crossing Fingers", the techno gremlins got in the way of uploading the photos ...
Handbags, happiness, girls and cars
Yesterday, when I posted the episode called "Eating Toast and Crossing Fingers", the techno gremlins got in the way of uploading the photos I wanted to include. OK, maybe it wasn't the gremlins, maybe it was me, chemo-brain yesterday made even joined up thinking beyond impossible.
So, here they are now
It might not be the prettiest handbag in the world, but it must be the biggest, and will come in very useful when I want to crawl inside it and hide instead of having my next chemo.
So I wasn't well enough to join them in the end, but I was definitely there in spirit. I just think this is a really happy photo of the team.
Something else that's really made my week this week is that my blog has been posted on a really lovely website in the States. I wondered why the readership had suddenly exploded Stateside last week, and then I had a really warm message from Charlene Bowers, who runs Bowers Motorsports. Charlene has decided to devote her website to Breast Cancer Awareness month, and she has really researched the subject very well, so that her website has a lot of very useful information about Breast Cancer, and some really helpful links for more information. Every day, she has a different breast cancer story, and I'm the 11th October feature. It's very reassuring to know that there are people out there who care enough to bang the drum for all of us who are dealing with this wretched disease, and if you get a chance, please have a look at her site - in between the narrative are loads of amazing photos of bright pink cars to die for! Here's the link :-
http://bowermedia.com/2012/10/a-month-of-pink/
So, here they are now
My new bargain handbag bought during chemo at the hospital on Monday. |
The Laughter Yoga girls, Lotte, Heidi, Carolina, Jo, Heather and Ruth, in the Alan Titchmarsh Green Room filming the Happiness show to be broadcast on 8th November |
Something else that's really made my week this week is that my blog has been posted on a really lovely website in the States. I wondered why the readership had suddenly exploded Stateside last week, and then I had a really warm message from Charlene Bowers, who runs Bowers Motorsports. Charlene has decided to devote her website to Breast Cancer Awareness month, and she has really researched the subject very well, so that her website has a lot of very useful information about Breast Cancer, and some really helpful links for more information. Every day, she has a different breast cancer story, and I'm the 11th October feature. It's very reassuring to know that there are people out there who care enough to bang the drum for all of us who are dealing with this wretched disease, and if you get a chance, please have a look at her site - in between the narrative are loads of amazing photos of bright pink cars to die for! Here's the link :-
http://bowermedia.com/2012/10/a-month-of-pink/
Thursday, 18 October 2012
Adventures with breast cancer: Eating toast and crossing fingers
Adventures with breast cancer: Eating toast and crossing fingers: Well, I've just eaten a piece of toast, my first food for over 48 hours, and I'm hoping against hope it stays down. Writing this is the perf...
Eating toast and crossing fingers
Well, I've just eaten a piece of toast, my first food for over 48 hours, and I'm hoping against hope it stays down. Writing this is the perfect distraction to take my mind off what may, unfortunately, happen next. Finally, yesterday, on the third day of the third chemo, the sickness kicked in, big time. At least I don't feel like a chemo fraud anymore, but I really wish the fairness fairy was back on duty this week - how does it happen that I eat nothing, feel like death warmed up, and still manage to put on a couple of pounds?
I was dreading going back for more chemo on Monday. I know that it's good for me, I'm incredibly lucky to be able to benefit from the very best of cutting-edge medicine, and that it may well significantly prolong my life, but on Monday morning I felt more like a stroppy teenager than a willing participant about it all. You just have to go there, let them do what they have to do, go with the flow and deal with the consequences. I do know that, and I did all of that, but I really would have rather been anywhere else.
The day is long and tedious, and on Monday it felt like the tears were never far away, but it was also peppered with a couple of really good moments too. A cancer charity had a little sale going on in the canteen, and someone had donated a brand new, soft, black leather handbag, almost large enough to hide in, at a bargain price of a tenner, so I really had to buy it, didn't I.
The other thing that was lovely was that, once again, I was overwhelmed by the sympathetic understanding of one of the doctors. A tiny, very pretty young doctor who really doesn't look like she should be out of school yet, listened as I explained why I am so apprehensive about the forthcoming Muga scan, essential to check that the chemo isn't causing me any damage to my heart, but involves two separate injections, and they can't use the portacath. She just seemed to realise how big a deal my needle phobia is to me, and is arranging for me to go to another hospital for an Echo scan instead, where they don't have to inject any dyes whatsoever. Her kindness in doing this just took away a whole extra layer of worry and dread, and immediately, everything just seemed that little bit brighter.
This time round, I feel really ill again, and the weeps have hit me big time too, but even though I've had to cope with being sick as well, it's not as awful as the last time. I'm hanging on to the fact that I've been here before, and it will pass and get better, and I'm not letting myself get dragged back into that big, deep dark pit of hopelessness that completely flattened me a few weeks ago.
I've even read a book - the first book I've managed to read since diagnosis. I'm an avid reader normally, and can't put a book down once I've lost myself in it. My kids have often wandered around saying "We're orphaned, mum's reading", and they haven't been far wrong - once totally absorbed in a really good story I simply wouldn't notice if the house was on fire or my kids were starving. Since I've had cancer, I just haven't had the concentration or energy to work my way through a whole book just for fun. However, this book wasn't much fun. It was the book Gloria Hunniford wrote when her daughter, Caron Keating, died of breast cancer. Caron had walked away from conventional treatments, choosing to pursue alternative cures, and some of them were very alternative indeed. I was very sad for her, and quite angry that so many charlatans were virtually queuing up to make money out of a very vulnerable young woman. There is a huge difference between "alternative" and "complimentary", things you can do instead of, or as well as receiving the very best that modern medicine can offer. An hour or two on the internet will bring up all sorts of other treatments, some of which sound plausible, others sound just plain whacky. There are all sorts of stories of people who were totally cured by "thinking" their cancer away or whatever, but there is very little hard scientific evidence to back up many of these claims. I can't work out if following different non-medical paths is courageous or cowardly, and is probably an amalgam of both. To do it properly, and really immerse yourself totally in it probably costs a lot more than I can afford, and you have to wonder if Steve Jobs or Robin Gibbs had had less money and fewer choices, would they have had to go down the conventional route, and still be alive as a result? Anyhow, this whole subject has stretched the old grey matter a bit, and that can't be a bad thing.
I nearly had a chance to be on National TV yesterday, but it fell through in the end for me, but the idea of it was very exciting all over the weekend. The Alan Titchmarsh Programme is doing a show all about "Happiness" on the 8th November, and they wanted some Laughter Yoga Leaders to demonstrate some laughter techniques. If you get a chance, please watch it, because 6 of my Laughter Leader friends and colleagues are on it. I qualified as a Laughter Yoga Leader a few weeks before diagnosis, so haven't really been able to get it going in a big way, but I do hold sessions every now and again for friends and family at my house. Laughing has some amazing health benefits, 10 minutes laughing is as good as 30 minutes on a rowing machine in terms of cardiovascular exercise. The Yoga part of the title is about the breathing - the deep, long oxygen-rich breathing you get from a belly-laugh, so nobody has to put their ankles behind their necks. Laughing has "whole body" benefits too - regular laughing gets everything working well together - your mind, body, spirit and emotions all get a real boost, and your body doesn't even notice whether it's because you are laughing for real or forcing laughter. Of course, in a group, what starts as forced laughter quickly dissolves into total hysterics for real, but if it doesn't people still get all the health benefits regardless.
So on Sunday, we had a little laughter session at home, just so I could get some practice in, and for the first time we had some small children, both of whom have special needs. It was a really lovely session, and the children seemed to really enjoy it and benefit from it, to the point that I can't wait til I get another chance to work with some "special" kids in small groups with their parents. So much to do, so many reasons to get better as soon as I can.
Some people have asked if I mind if they pass this blog on to other friends, or via their Facebook page. Of course I don't mind, in fact I feel the more the merrier, although I never thought anyone was going to be interested in the minutae of my comings and goings! I am staggered that the readership continues to grow and grow, and that people are reading from all over the world, and even leaving lovely comments sometimes. Thank you. There is a facility to become a "follower" which means that you get an email to let you know whenever I've found the time to write a new post that you can use too, if you want to.
Guess what? The toast is still down, and I even popped off halfway through to add a quarter of a Scotch Egg to the mix, so things are definitely looking up.
PS I took a great photo of my new handbag to put on here, but I've been having technical gremlins for over an hour, so maybe, next time!
.
I was dreading going back for more chemo on Monday. I know that it's good for me, I'm incredibly lucky to be able to benefit from the very best of cutting-edge medicine, and that it may well significantly prolong my life, but on Monday morning I felt more like a stroppy teenager than a willing participant about it all. You just have to go there, let them do what they have to do, go with the flow and deal with the consequences. I do know that, and I did all of that, but I really would have rather been anywhere else.
The day is long and tedious, and on Monday it felt like the tears were never far away, but it was also peppered with a couple of really good moments too. A cancer charity had a little sale going on in the canteen, and someone had donated a brand new, soft, black leather handbag, almost large enough to hide in, at a bargain price of a tenner, so I really had to buy it, didn't I.
The other thing that was lovely was that, once again, I was overwhelmed by the sympathetic understanding of one of the doctors. A tiny, very pretty young doctor who really doesn't look like she should be out of school yet, listened as I explained why I am so apprehensive about the forthcoming Muga scan, essential to check that the chemo isn't causing me any damage to my heart, but involves two separate injections, and they can't use the portacath. She just seemed to realise how big a deal my needle phobia is to me, and is arranging for me to go to another hospital for an Echo scan instead, where they don't have to inject any dyes whatsoever. Her kindness in doing this just took away a whole extra layer of worry and dread, and immediately, everything just seemed that little bit brighter.
This time round, I feel really ill again, and the weeps have hit me big time too, but even though I've had to cope with being sick as well, it's not as awful as the last time. I'm hanging on to the fact that I've been here before, and it will pass and get better, and I'm not letting myself get dragged back into that big, deep dark pit of hopelessness that completely flattened me a few weeks ago.
I've even read a book - the first book I've managed to read since diagnosis. I'm an avid reader normally, and can't put a book down once I've lost myself in it. My kids have often wandered around saying "We're orphaned, mum's reading", and they haven't been far wrong - once totally absorbed in a really good story I simply wouldn't notice if the house was on fire or my kids were starving. Since I've had cancer, I just haven't had the concentration or energy to work my way through a whole book just for fun. However, this book wasn't much fun. It was the book Gloria Hunniford wrote when her daughter, Caron Keating, died of breast cancer. Caron had walked away from conventional treatments, choosing to pursue alternative cures, and some of them were very alternative indeed. I was very sad for her, and quite angry that so many charlatans were virtually queuing up to make money out of a very vulnerable young woman. There is a huge difference between "alternative" and "complimentary", things you can do instead of, or as well as receiving the very best that modern medicine can offer. An hour or two on the internet will bring up all sorts of other treatments, some of which sound plausible, others sound just plain whacky. There are all sorts of stories of people who were totally cured by "thinking" their cancer away or whatever, but there is very little hard scientific evidence to back up many of these claims. I can't work out if following different non-medical paths is courageous or cowardly, and is probably an amalgam of both. To do it properly, and really immerse yourself totally in it probably costs a lot more than I can afford, and you have to wonder if Steve Jobs or Robin Gibbs had had less money and fewer choices, would they have had to go down the conventional route, and still be alive as a result? Anyhow, this whole subject has stretched the old grey matter a bit, and that can't be a bad thing.
I nearly had a chance to be on National TV yesterday, but it fell through in the end for me, but the idea of it was very exciting all over the weekend. The Alan Titchmarsh Programme is doing a show all about "Happiness" on the 8th November, and they wanted some Laughter Yoga Leaders to demonstrate some laughter techniques. If you get a chance, please watch it, because 6 of my Laughter Leader friends and colleagues are on it. I qualified as a Laughter Yoga Leader a few weeks before diagnosis, so haven't really been able to get it going in a big way, but I do hold sessions every now and again for friends and family at my house. Laughing has some amazing health benefits, 10 minutes laughing is as good as 30 minutes on a rowing machine in terms of cardiovascular exercise. The Yoga part of the title is about the breathing - the deep, long oxygen-rich breathing you get from a belly-laugh, so nobody has to put their ankles behind their necks. Laughing has "whole body" benefits too - regular laughing gets everything working well together - your mind, body, spirit and emotions all get a real boost, and your body doesn't even notice whether it's because you are laughing for real or forcing laughter. Of course, in a group, what starts as forced laughter quickly dissolves into total hysterics for real, but if it doesn't people still get all the health benefits regardless.
So on Sunday, we had a little laughter session at home, just so I could get some practice in, and for the first time we had some small children, both of whom have special needs. It was a really lovely session, and the children seemed to really enjoy it and benefit from it, to the point that I can't wait til I get another chance to work with some "special" kids in small groups with their parents. So much to do, so many reasons to get better as soon as I can.
Some people have asked if I mind if they pass this blog on to other friends, or via their Facebook page. Of course I don't mind, in fact I feel the more the merrier, although I never thought anyone was going to be interested in the minutae of my comings and goings! I am staggered that the readership continues to grow and grow, and that people are reading from all over the world, and even leaving lovely comments sometimes. Thank you. There is a facility to become a "follower" which means that you get an email to let you know whenever I've found the time to write a new post that you can use too, if you want to.
Guess what? The toast is still down, and I even popped off halfway through to add a quarter of a Scotch Egg to the mix, so things are definitely looking up.
PS I took a great photo of my new handbag to put on here, but I've been having technical gremlins for over an hour, so maybe, next time!
.
Thursday, 11 October 2012
Adventures with breast cancer: Truckloads of Life
Adventures with breast cancer: Truckloads of Life: Thank you for all the lovely and supportive feedback you've given me about last night's blog entry with all the photos - it really has b...
Truckloads of Life
Thank you for all the lovely and supportive feedback you've given me about last night's blog entry with all the photos - it really has been heart-warming and quite overwhelming. I've always been reluctant to use photos before because I'm no great classical beauty, and I'm normally the most unphotogenic person on the planet, but Anita did such an amazing job, that even I have to admit I almost look half decent in some of them. I'd forgotten that her father was a photographer, so she knows a lot of the tricks of the trade like lighting - we had the front door wide open and took them all in the hallway, kind of embarrassing with passers-by gawping and neighbours wondering, but hey ho. She also was very good at directing - normally when someone takes photos you just stand there with a silly self-conscious grin on your face until the shutter has decided to fall, but Anita was telling me do this, stand like that, put some attitude into it, etc etc, and a lot of the expressions I'm pulling are in response to her saying something hilarious off the cuff just as she was about to shoot. She even nearly injured me for life by fetching the widest chair I own, and getting me to do the classic "Christine Keeler" pose sitting on it backwards, but with clothes on.
It hadn't occurred to me before, but now that I'm 5 months into the cancer treatment there may be a perception among people who either don't know me or who haven't seen me in ages that I probably look like a washed-out concentration camp victim by now, and of course, I don't, which is good, and in fact that wig does me far more favours than my natural hair ever did.
My big fear when all of this started was that I’d be stuck in bed too ill to do anything for month on end, and most of the time that isn’t the case. Sometimes I even forget I’ve got cancer completely. My oomph and energy isn’t what is used to be, and it’s hard to be active for more than 15 minutes at a time, and concentration isn’t what I’d like it to be, but overall, it’s not too bad.
Life is never easy, and when you get something big happening as well, it doesn't happen in isolation. The world still turns, the stresses still happen, and the house still needs cleaning, the clothes still need washing, the cooking needs to get done, and the constant, never-ending paperwork still just keeps cascading onto the doormat. Teenagers still forget to bring their washing and their plates downstairs a lot of the time, and just because their mother has cancer, doesn’t mean that the teenage years, with all the hormones, upsets and anger, are any less tricky. The same balls still need juggling and kept in the air at all times, but with a thick blanket of cancer over the top that just makes doing it all that little bit harder. Then the good stuff happens, too; birthdays, celebrations, lovely meals out and lovely meals in. With WM’s constant support for all of us, we are all somehow pulling together as a family and making it all work, but sometimes it just needs a little bit more planning, patience and negotiating to make it happen.
Cancer isn’t the only thing that makes life a bit more of a struggle. Life can just deliver a truckload of tough stuff to any of us, without a moment’s warning or a backward glance. One friend of mine was nearly killed a few days before my mastectomy, when she was hit on a pedestrian crossing by a motorbike and sustained a very serious head-injury. She is doing very well and coping amazingly well, and we’re all thrilled that she has certainly retained her wickedly sharp sense of humour, but full recovery will take a very long time, and meanwhile she’s still being an amazing mum to her three little boys.
Yesterday, someone else I knew had to have an emergency operation spending two days away from her little boy, and still finding the resources to send me some lovely thoughts about my photos late last night. Another friend had both her teenage boys in separate serious accidents within days of each other - one nearly lost his fingers in a chainsaw, the other was in a bus when it crashed – so she has certainly had to deal with far more than her fair share of worry and stress, but no one would know because she still manages a laugh and a nice word for everyone.
Life can be marvellous, but it sometimes seems like a relentless slog through treacle that's just miserable and flipping hard work. Things hit us from all directions when we're least expecting it. That's true whether you have cancer or not.
Some people with cancer worry that they'll never be or feel the same again. I know I won't, but I'm pleased about that. I think that life is all about learning, developing, growing and understanding, and if we aren't altered by our experiences we'll never learn to dig deep and discover what amazing resilience and resources we actually have, what strength and coping skills we are developing with every new challenge.
Yes, OK, so I’m having a good chemo week, so the world does seem like a fairly nice place right now. This time next week, on day 4 of chemo 3, I doubt I'll feel as magnificently philosophical as I do now. I'll probably be miserable and grumpy, and feel as ill as if I'd been hit by a steam-roller, an articulated lorry and a passing train within minutes of each other. I’ll just have to remember to go with the flow, and sit it out until I’m feeling better – something that’s much easier to write down now than to actually do next week.
I think one of the secrets in all of this, which I'm still hundreds of miles away from perfecting, is the ability to separate your mind from what is happening to your body. Cancer treatment isn't always terrific fun, but to be able deal with the pain or the illness side of things without sinking into the pits emotionally too would be really helpful. I can do it sometimes, but I still fail dismally at other times, and always when they come at me with a needle.
Mostly I think I'm doing OK, and coping with it all pretty well, Just like the amazing friends I have who are also grappling with the tough stuff at the moment. We'll all get through it and come out the other side as better, more resourceful people, even more ready to deal with the next passing truckload of life.
PS I was just about to upload this, and my lovely daughter has just shown me the website for one of her favourite clothes shops and guess what? Turbans seem to be the height of fashion this winter – how lucky is that!
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 ...
Labels:
Baldness,
Breast Cancer,
chemo,
Chemotherapy,
hair loss,
hats,
losing hair,
photos,
wigs
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.
.
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?!
Bright purple, like the lady in the poem |
A favourite - but hope I don't look like a lampshade |
I love it so much that it deserves 2 photos |
Hardly the most flattering - more like Benny from Crossroads |
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? |
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? |
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 |
This one is perfectly ridiculous but beautifully brightly multicoloured, and shows me for what I really am at heart - a Donny Osmond teenybopper |
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.
.
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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Labels:
Baldness,
Breast Cancer,
chemo,
Chemotherapy,
hair loss,
hats,
losing hair,
photos,
wigs
Friday, 5 October 2012
Adventures with breast cancer: A double whammy
Adventures with breast cancer: A double whammy: It's been well over a week since I last updated you on what's been going on, and you may have guessed that it hasn't all been a bed of roses...
A double whammy
It's been well over a week since I last updated you on what's been going on, and you may have guessed that it hasn't all been a bed of roses at this end. I'm lots better now, but last week I don't think I have ever felt so ill, or so hopelessly miserable. Both came as quite a shock. Having come through the first chemo relatively unscathed, I expected to sail through this one too, but the chemo monster came knocking, and wanted paying for the first lot too I think. I was OK for the first day or two, but by last Wednesday, 2 days post chemo, I honestly thought I was going to die, and worst of all, I was too sad to really care. A bit of a double whammy, and having been mostly so relentlessly upbeat about things for months on end, I just didn't see the low, sad, deep pit of despair coming, and it absolutely knocked me sideways.
I felt sick, but wasn't. I had stomach cramps, which materialised into 6 days of the evil runs. The lining of my mouth and throat and nose became covered with ulcers, and my tongue felt like it had been pebbledashed. My head hurt. Everything hurt, and the wailing, despairing floods of tears just wouldn't stop. The tiredness too. Getting off the sofa felt like doing a heavy-duty gym circuit. In short, I was totally pathetic, and probably bored the pants off everybody I know. Eating and drinking and even talking hurt like hell, but it didn't shut me up from 24 hour continual whingeing and wailing.
In the middle of all of this I got a call from the Hospital. They had managed to get my CT scans and X rays from the local General Hospital I spent a horrific 9 hours in with the chest pain they thought was a Pulmonary Embolism. It wasn't, but spending a whole day believing I had a whole extra life threatening condition on top of breast cancer wasn't much fun at the time. Anyhow, back to this call, about the chest pain that had bugged me for three weeks. Finally they have diagnosed the cause - I have a partially collapsed lung. Even in the depths of my misery I wanted to dance around the kitchen, because they were also able to tell me that the Consultant Oncology Radiologist had confirmed that there were no visible traces of cancer anywhere in my lungs! The longer the pain persisted, the more convinced I had become that it was bad, sad news about cancer spread. So although a collapsed lung isn't really anything to celebrate, it feels like it really should be.
I think that phonecall was the turning point, and slowly but surely, over the next few days the despair lifted, and having been convinced a few days ago that I was bound to be dead by Christmas, I'm now fairly sure it will be Christmas in about 40 years time.
It's taught me a lot, this total blanket of sadness. I had started to believe that I was dealing with my cancer so well, so positively and in such an upbeat way, that I was fairly immune to the miseries. Now I know that I'm not, and when that blanket descends, it completely takes you over and feels so real. A few days ago, I honestly believed at the negative thoughts and feelings were real and would last forever. So no doubt the miseries will knock me over another time when I'm least expecting it, but hopefully I'll remember that they will pass, and I'll bounce back to happy cancer land all over again.
I'm also very lucky that this chest pain means that the Radiologists have had an unscheduled look at my lungs. It was two months between the bone and body scans that showed no sign of cancer spread and the start of chemotherapy, two long months where, in my darker moments when my imagination works overtime, the cancer cells were happily building tumour towerblocks while throwing wild parties throughout my body, almost certainly starting in the lungs. So its a hugely reassuring bonus to have someone take a sneaky peek at my lungs when that normally wouldn't be on the cards at this stage in my chemotherapy.
On Monday, my hair looked like the remnants of a sad 1970's middle-aged man with a comb-over, so WM and I decided that the rest had to go. WM bravely shaved the rest away, and so I'm now as bald as a coot, whatever a coot actually is. My darling youngest son is a bit freaked by it, so I have to wear a hat at all times I'm not wearing a wig, even to get up to go to the loo in the middle of the night. I have to admit I do look a bit scary, and it's a bit of a shock whenever I see this mad-looking bald woman staring at me from a mirror, but strangely I'm quite OK about it.
On Tuesday, I wore the wig when I collected son No 1 from school to go to the dentist. It's a bit scary wearing it for the first time, and I felt more than a little bit self-conscious. The lovely staff at the school were so supportive about it - thank you Debbie, Andrea and Jackie, you all made my day by your reassurances and compliments. On the way to the dentist, the wig was getting very tight, and a headache was developing, so between traffic jams I whipped it off and replaced it with a bright pink turban hat that sort of shouts "Look over here everyone, this woman has cancer". But who cares when it's so comfortable. Later I discovered that the wig isn't tight, it's the wig cap you're supposed to wear under it that is basically a mishapen popsock, that had been trying to prevent the blood supply to my brain. So if I wear the wig on a naked head, it doesn't hurt. It still feels funny though, but I can wear it for a couple of hours at a time now, so I'm building up tolerance.
I've also pushed the boat out and bought about 10 brightly coloured hats to wear as well. All very jaunty and lots of fun, and having spent a squillion years believing hats didn't suit me, now that I'm a woman of a "certain age" they absolutely do. I even bought a purple hat so I can be the like the old crazy lady in the poem.
Tonight I went to our drama group in both a hat and a wig. Long story, but I had promised Alice I'd show her the hat that matched my mad turquoise shoes and handbag. Everyone was very complementary, but afterwards, Sheree, our fabulous drama teacher came up with an amazing proposal that has just about put a further spring in my step and made me want to dance all the way home. Just a thought, but what if..... at the Brighton Fringe next May we present a dramatised version of this blog? ! How exciting is that! So right now, my mind is working overtime and I'm about as happy as it's possible to be after midnight on a school night.
I felt sick, but wasn't. I had stomach cramps, which materialised into 6 days of the evil runs. The lining of my mouth and throat and nose became covered with ulcers, and my tongue felt like it had been pebbledashed. My head hurt. Everything hurt, and the wailing, despairing floods of tears just wouldn't stop. The tiredness too. Getting off the sofa felt like doing a heavy-duty gym circuit. In short, I was totally pathetic, and probably bored the pants off everybody I know. Eating and drinking and even talking hurt like hell, but it didn't shut me up from 24 hour continual whingeing and wailing.
In the middle of all of this I got a call from the Hospital. They had managed to get my CT scans and X rays from the local General Hospital I spent a horrific 9 hours in with the chest pain they thought was a Pulmonary Embolism. It wasn't, but spending a whole day believing I had a whole extra life threatening condition on top of breast cancer wasn't much fun at the time. Anyhow, back to this call, about the chest pain that had bugged me for three weeks. Finally they have diagnosed the cause - I have a partially collapsed lung. Even in the depths of my misery I wanted to dance around the kitchen, because they were also able to tell me that the Consultant Oncology Radiologist had confirmed that there were no visible traces of cancer anywhere in my lungs! The longer the pain persisted, the more convinced I had become that it was bad, sad news about cancer spread. So although a collapsed lung isn't really anything to celebrate, it feels like it really should be.
I think that phonecall was the turning point, and slowly but surely, over the next few days the despair lifted, and having been convinced a few days ago that I was bound to be dead by Christmas, I'm now fairly sure it will be Christmas in about 40 years time.
It's taught me a lot, this total blanket of sadness. I had started to believe that I was dealing with my cancer so well, so positively and in such an upbeat way, that I was fairly immune to the miseries. Now I know that I'm not, and when that blanket descends, it completely takes you over and feels so real. A few days ago, I honestly believed at the negative thoughts and feelings were real and would last forever. So no doubt the miseries will knock me over another time when I'm least expecting it, but hopefully I'll remember that they will pass, and I'll bounce back to happy cancer land all over again.
I'm also very lucky that this chest pain means that the Radiologists have had an unscheduled look at my lungs. It was two months between the bone and body scans that showed no sign of cancer spread and the start of chemotherapy, two long months where, in my darker moments when my imagination works overtime, the cancer cells were happily building tumour towerblocks while throwing wild parties throughout my body, almost certainly starting in the lungs. So its a hugely reassuring bonus to have someone take a sneaky peek at my lungs when that normally wouldn't be on the cards at this stage in my chemotherapy.
On Monday, my hair looked like the remnants of a sad 1970's middle-aged man with a comb-over, so WM and I decided that the rest had to go. WM bravely shaved the rest away, and so I'm now as bald as a coot, whatever a coot actually is. My darling youngest son is a bit freaked by it, so I have to wear a hat at all times I'm not wearing a wig, even to get up to go to the loo in the middle of the night. I have to admit I do look a bit scary, and it's a bit of a shock whenever I see this mad-looking bald woman staring at me from a mirror, but strangely I'm quite OK about it.
On Tuesday, I wore the wig when I collected son No 1 from school to go to the dentist. It's a bit scary wearing it for the first time, and I felt more than a little bit self-conscious. The lovely staff at the school were so supportive about it - thank you Debbie, Andrea and Jackie, you all made my day by your reassurances and compliments. On the way to the dentist, the wig was getting very tight, and a headache was developing, so between traffic jams I whipped it off and replaced it with a bright pink turban hat that sort of shouts "Look over here everyone, this woman has cancer". But who cares when it's so comfortable. Later I discovered that the wig isn't tight, it's the wig cap you're supposed to wear under it that is basically a mishapen popsock, that had been trying to prevent the blood supply to my brain. So if I wear the wig on a naked head, it doesn't hurt. It still feels funny though, but I can wear it for a couple of hours at a time now, so I'm building up tolerance.
I've also pushed the boat out and bought about 10 brightly coloured hats to wear as well. All very jaunty and lots of fun, and having spent a squillion years believing hats didn't suit me, now that I'm a woman of a "certain age" they absolutely do. I even bought a purple hat so I can be the like the old crazy lady in the poem.
Tonight I went to our drama group in both a hat and a wig. Long story, but I had promised Alice I'd show her the hat that matched my mad turquoise shoes and handbag. Everyone was very complementary, but afterwards, Sheree, our fabulous drama teacher came up with an amazing proposal that has just about put a further spring in my step and made me want to dance all the way home. Just a thought, but what if..... at the Brighton Fringe next May we present a dramatised version of this blog? ! How exciting is that! So right now, my mind is working overtime and I'm about as happy as it's possible to be after midnight on a school night.
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