A long way from perfect

It's a scary old thing, this book-writing malarkey, and for several days this week I just convinced myself that everything I had so far written was utter rubbish, and that the whole caboodle was a crazy idea. 

I think part of it is because the book is supposed to be a "How to" guide at bringing up disabled children, which is very much my specialist knowledge since that's roughly about all I've been doing for the past couple of decades, but it still feels quite bold and big-headed to shout out to the world I'm an expert. I haven't got it all right by any means, in fact there are days when I haven't got anything right altogether, and my kids are utterly gorgeous, engaging, funny, well-rounded young people, but they, just like their mum, are all a long way from perfect. 

Quite frankly, nor would I want them to be. How boringly conventional and predictable life would be then, hey? But if people are kind enough to buy and read this book when it's published, won't they be expecting me to be some kind of Superwoman with "Peter Perfect" kids? Hell, no. I really hope not. 

Then there have been other dilemmas. If this book is bought for a young couple who have just been told their newborn baby has lifelong disabilities, I want it to be able to support them and make them feel it's doable and OK. So half the time I'm not putting in anything that might terrify the living daylights out of them, like what it's really like dealing with Healthcare, Social Services and Education. Then if I don't it's selling short all the parents who might be at that stage and simply banging their head against a wall desperate for some ideas as to how to go into those meetings, retain their dignity, say their piece, be heard properly, and come out of the meeting knowing that some good will come out of all that stress. I had a bit of a wake-up call along these lines this week, when two mothers asked for my help about how best to deal with social services. They are not my stories to tell, but if I tell you I was pacing up and down in a fury and they aren't even about my own kids, I think you can imagine just how awful a service they are being offered, or more to the point, not even being offered. 

Then there's the whole isssue of is this a book to tell people how to access services, how to keep your sanity, how to deal with the constant, relentless demands of your child and how to still manage to bring up happy, delightful children? Or is it a chance to tell my story? Well it's supposed to be the first, but using my own experiences to illustrate various points. However, once I start telling our family story, at times I've been guilty of running away with myself, getting completely stuck into it, and producing pages of what can sometimes only be described as a stream-of-consciousness rant. Hey ho again. I need a little sign up at the top of the laptop stating "Shut up, Yvonne, this isn't about you". 

The stories of our trials and tribulations are valid, and stories are a rich part of our culture and actually help people learn and remember stuff, so I'm not talking about taking them out altogether, however, there have been moments when they have become so big and so ranty that they are risking squashing the whole purpose of the book. 

The other problem is that so far, the book hasn't even made me laugh very much. It's all a bit dark and a bit heavy, which just won't do. 

However, the night before last I actually had a chat about all these things with WM and Francesca. They really ganged up and bullied me back into action, but in a very nice, kind, good way. Francesca just said, "oh for goodness sake, Mum, this is only a first draft, you can't worry about the style or substance at all, and it's certainly far too early to even think of editing it yet". Then Malcolm added "Just write and write and write, you can re-work all sorts of bits and pieces, and you keep saying it's rubbish, but the bits you've let me read so far are fantastic!". 

They are really good at this whole thing, the pair of them, so I'm very lucky. They really made me think, and also come to terms with the fact that over the past 20 years or so, I've been running on empty for a lot of the time, turning myself inside out to find more resources I didn't even know were lurking deeply buried within me. Of course, the first time I've ever revisited some of that is going to make me emotional, and there have been some really negative emotions I've had to deal with since I started this project 4 weeks or so ago. Guilt, anger, fear, abandonment, isolation, frustration... to name but a few. So of course they've spilled onto the pages too. It's probably been incredibly theraputic and cathartic, and when I go to edit, I just know the funny side of everything will also be peeping out from between the lines and it will all be great in the end. 

In the middle of all of this, I got some really wonderful, very exciting news. There is a very high-profile, lovely person who has agreed to write the Foreword for the book. I did several hours of dancing around the kitchen very badly with my creaky bones, and I was certainly far too excited to write a word for the rest of the day. Maybe that's what precipitated the crisis of confidence a little bit too - if I could tell you who this person was you'd understand how now I'm really putting myself under pressure because the stakes have been upped quite significantly, and the book is now much more likely to be noticed and taken seriously because this person's reputation will really increase my credibility. So failure is simply not an option and mediocrity just won't do. This book, unlike me and the kids, needs to be as perfect as possible. 

Wouldn't it be great if this book could help parents to understand their limitations better than I was able to, and put strategies in place to take care of themselves years before I ever managed. Wouldn't it be great if they don't get Breast Cancer because they knew not to run themselves into the ground far quicker and far harder than was ever good for me. I'm pretty convinced that God, or Mother Nature, or the Universe or whatever you want to call it, handed me a life-threatening illness to make absolutely damned well sure I slowed down and stopped. Like that really worked... not.  I know my time is likely to be shorter than I'd have liked it to be, so I'm trying to get everything done at a 100 miles an hour, including this book. Typing it so fast I don't have time to worry about anything else. 

So far I've written about 102 and a half paperback pages, and that's about two-thirds of the way through. Some of it will. of course, need to be rewritten, and humour has to be shoved in all over the place too. 

Tomorrow I'm off for a publishing meeting, all very exciting, so tonight my printer has to work to print everything I've so far done. I've also got to scribble out my book objectives, an action plan, a sketch of a marketing plan, and a list of questions to write. I've also promised Francesca we'll sit down and watch some telly, and WM has just phoned too, he's promised to bring us in a takeaway tonight. 

Lovely jubbly, I'd better push on. 

PS. In the book I may decide to include some useful contacts and website addresses. Which ones would you recommend? Please let me know. Thank you. 

Francesca, Adam and I with a random lady in the background. 

Coke Floats & Chemo: She's that lady with cancer, you know

Coke Floats & Chemo: She's that lady with cancer, you know: Cancer, disabled children and writing a book have totally dominated my week, with a fair amount of very kind and positive comments about my ...

She's that lady with cancer, you know

Cancer, disabled children and writing a book have totally dominated my week, with a fair amount of very kind and positive comments about my analysis of some of the problems facing our NHS too. It's been a good week, if a little bit too full-on to catch my breath very often. 

Friday was Cancer Day. Not only was it my 3 weekly visit to the chemo-room for another dose of Herceptin and Zometa, the two drugs that are hopefully holding my cancer at bay, it was also my 3 monthly appointment with the Consultant Oncologist. 

He is a lovely man, everything looks very encouraging, and there wasn't any bad news, indeed, there was actually some good news, so it was a bit of a surprise that it left me feeling low and sad all over the weekend. 

The good news is that they have taken the decision that I'm going to stay on Herceptin indefinitely. The usual time is one year, which is roughly how long I've already been taking it. However, in women like me whose cancer has already spread, sometimes it is being taken for several years. The drug itself has only been around for 10 years, and there are pockets of women around the globe who have now been on it for 6 or 7 years or even longer, and many seem to be doing incredibly well on it, and it seems to be holding the cancer back very successfully. It they are also taking Tamoxofen or Letrozole to block their oestrogen levels too, then the odds of it working well are further increased. I come into that category since I also take Letrozole, and although there are no guarantees that it will work in every case, and there are also cases where it can suddenly seem to stop working, it is really good news. 

Breakthroughs are being made in cancer treatments all the time, so the longer I keep going, perhaps there will be other new options I may be offered further down the line. So I should be dancing around the kitchen thrilled to bits, but I'm not. At first I felt flat, then very low indeed, and I'm really not sure why at all. It's probably another layer of acceptance that, whether I like it or not, cancer is lurking and will always be lurking deep inside my spine, watching and waiting until it can pounce and spread and kill me. My job, and the job of the medicines I'm on, is to do everything we can to outsmart it and keep it on the back-foot, and I suppose this weekend it just hit me all over again that that's not really the way I want to live my life, with this huge scary shadow looming over me and trying to kill me. I try to tune it out most of the time and just get on with living, but I suppose hospital appointments are always going to bring it out into the open and back into the room to bite me on the bum all over again. 

I'm feeling better about it all today though, and getting the whole thing back into a more manageable perspective. Part of it is about realising that I can never turn the clock back and be exactly who I was the day before diagnosis, too much has changed. I will never feel completely well again for starters, the doctor on Friday said that this breathlessness and chest pains is probably more to do with the mastectomy scar tissue and will be with me life-long. Unless, and this one will really make a load of you who know me, or have read my previous post My Needle-Phobic Past, laugh long and loud..... unless I am prepared to try Acupuncture. We actually have a lovely, highly-skilled and very patient acupuncturist in the family, WM's sister, but it still scares the living daylights out of me. 

I know that I'll never be able to walk far without becoming breathless, I know that the agonising joint pains from the side-effects of Letrozole will continue to make me feel like a crippled and weak 103 year old, and I know that the numbness in my fingers and toes won't ever subside, and that the resulting clumsiness will continue to cost me a small fortune in broken crockery. I know that my stamina will never be once what it was, nor my concentration, and I also know that forever more people will know me as "that lady with cancer". It does change people's perceptions about you, which can be isolating and lonely, but I suppose I try to change people's perceptions about cancer too, so it probably evens out. 

The one great thing about having cancer for me though, is this. It really focuses the mind, it makes me want to really live and get things done, and although I could never fib and say that procrastination isn't one of the things I do really really well any more because I'm as good at it as anybody, cancer does motivate me to get on and do things that I've spent years dreaming about. 

Like writing a book! Yes, really! I'm three chapters in with nine more to go, and I am so excited about it all. Last weekend I spent three days at a Seminar called "The Millionaire Author's Bootcamp" which has totally inspired me to get going. Each day at the Bootcamp we had 4 motivational speakers each talking for 90 minutes on book publishing or subjects closely related to it like PR, Self-Publishing, Internet Marketing, Public Speaking, Finding a Publisher, all sorts of things. Completely fascinating, and really gave me the kickstart I've needed for ages. 

A lot of the speakers were published authors who were now very wealthy indeed, not necessarily because they had written the best book in the world, but because they had mastered how to really market it successfully on the internet, and then knew how to really engage an audience as a Public Speaker, where they were able to talk authoritatively about the subject of their book and get paid pretty well for it too. These were ordinary, nothing special people, people like you and me, and I just feel that, with the children I have, and the financially tricky situation we have stumbled along in ever since they were born, I owe it to my three to do what I can to earn some money to help them on their way into adulthood. Goodness knows, they have triumphed over so many difficulties already, and they may lose their mum well before they are ready to cope alone; a little bit of a nest-egg behind each of them might make all the difference. 

I've also signed up for two more courses which I can't afford at all - one on Internet Marketing and the other on Public Speaking. The fact that I can't afford them means that I have to work really hard to implement any or all the strategies I'll learn. One of the recurrent themes on the three day seminar last week was to start living like a millionaire ..... well I've certainly been spending like one! At this rate I've have the family homeless and living in a cardboard box by Christmas unless I really make this happen - what better incentive could there be? 

The book is aimed at parents of special needs children, I'm writing the book I wanted to read when Toby was first diagnosed all those moons ago. It's going to cover things like how to deal with the armies of professionals and still get the best of services for your child, how to build a support network of the right sort of help from the right sort of people, how to ensure your other children still have a gloriously happy and normalised childhood, how to ensure you don't go under and drown in the sea of admin - fancy me being the one to be advising other people on how to handle all that paperwork appallingness that comes with the territory of special needs? Ha ha ha, a match perhaps to start a bonfire in the garden? It's also covering education, a complete special needs minefield. 

There are dozens of "advice" books from specialists and experts, but no parenting guidebook that I can find that is written by another parent who has learnt the hard way, by living and doing it. I'm hoping it will make parents like me smile too sometimes, and help them realise that they aren't in this alone. 

Of course it may be a total flop, but if we only ever did things that were guaranteed to succeed there would be no innovation whatsoever. That's another great thing about cancer. A few years ago the idea of failing might have stopped me altogether in case people scoffed and laughed as I made a fool of myself. Well hey ho, people are just so much kinder now, and if I make a complete idiot of myself, they'll just go "Oh well, she is that lady with cancer, you know, bless her". Or at least I can pretend that's what they'll say! 

As well as everything else, we had a great day on Saturday, taking Toby to one of his very favourite day's out, the Lord Mayor's Show. We managed to get a special Disability Pass so that we were able to drive straight through the cordons closing the City of London Roads to all traffic, and then park just yards away from the parade. So it was cold with torrential rain and we all got soaked to the skin, but it was such a happy day, with Toby on Cloud Nine as you can see from the photos. 


And yes, that really is a camel!

Coke Floats & Chemo: NHS care for disabled children

Coke Floats & Chemo: NHS care for disabled children: The NHS. We all have a view of it, and the received wisdom is that it is a noble institution, a veritable "National Treasure". It ...

NHS care for disabled children

The NHS. We all have a view of it, and the received wisdom is that it is a noble institution, a veritable "National Treasure". It feels churlishly unpatriotic to voice even the most gentle, whispered criticisms, and yet with it hurtling towards financial disaster, and brandished about as both a pawn and a weapon by politicians of all persuasions, constructive criticism right now is an absolute must. 

For the majority of the country, the NHS is there in the background as an insurance policy for when they or a loved one really needs it. Chances are that when they do, it will be short and sweet, and they will be left with an incredibly good impression of an amazing NHS who perform miracles with a ready smile and some comforting words. 

Yes, that version of the NHS does exist, it's alive and kicking and is a total joy to behold. I've seen it for myself time and again with my cancer care. However, for some of us, those of us who parent disabled children, there is often another very different version we also have to deal with, one that leaves us feeling isolated, alone, frightened, marginalised and very, very angry. 

When you are a competent, intelligent parent of a disabled child, over the years you organically become their expert. We can tell by a fleeting expression that a seizure may be imminent, or by the tone of a cough that a chest infection is on its way. We know how to keep our children calm, how a whole sentence can be conveyed in a slight movement of the head of a non-verbal child, and what to do to best encourage them to co-operate with a frightening hospital procedure. We have years of 24/7 on-the-job training and experience, yet we lack the certificate on the wall that we have earned over and over again. 

The very best NHS staff recognise this. They treat us with respect, they ask our opinions and they listen. These staff members are a joy to work with, and it is working "with", because they understand that working in partnership with committed parents will not only secure better outcomes for the children, but it will actually make their jobs a load easier too. Sadly, there aren't enough of these people to go around, which means that a lot of the time we have to deal with entirely preventable and particularly difficult situations. 

Some staff feel threatened by our knowledge and experience. Some seem too insecure to share the decision-making process with us. Some are just downright arrogant and appallingly bad-mannered. This is endemic right across the spectrum from the lowliest receptionist to the most high-and-mighty Consultant Specialist. It isn't everybody, and it's desperately sad that these people are being let down too by their less-than-professional colleagues,  but it's there, loud and clear, a sort of "institutionalised arrogance" that leaves us in absolutely no doubt as to who holds the power. 

These people know we are vulnerable, they know that we are struggling to cope with what is often the impossible, and most of all, they know that it's highly unlikely that we would ever complain. How can we? Our children's health, well-being and sometimes their very existence is completely dependent on the NHS. So we parents struggle on, stoically and silently, smiling through gritted teeth and putting up with the indefensible attitudes of many members of staff. It feels like a very invidious, but far too prevalent, form of bullying, by people who are paid by the taxpayer to deliver care and support to those who really need it, not to make their lives more difficult. 

What they don't know, though, is that we talk to each other. We share stories both of great practice and total incompetence, and most local parents get the measure of their local team pretty quickly. We are not alone, although in a clinic room it can often feel like it. 

A close friend, after a particularly difficult afternoon at a local hospital seeing a very well-respected Paediatrician, wrote this to me on Facebook. I quote with her permission. 

Yvonne, if you ever get a chance to tell  medical professionals what parents really want from them, here's my bit. 

1.    Don't be late for your first appointment.
2.    Introduce the other people in the room.
3.    Listen/look at the child 
4.    Listen/look at the parent.
5.    Have all the notes, in order.
6.    Read the up to date notes before we walk in so we don't have to explain      the last 13 years every time.
7.    Develop some empathy and use it.
8.    Use your common sense.
9.    Stop ticking boxes, or at least make us feel like you're not ticking boxes.
10.  Announciate your words.
11.  Have some respect.
12.  Realise that no matter how bad the person sitting in front of you says it is, it's 10 times worse in real life.
13.  They probably don't get much sleep.
14.  The person sitting in front of you doesn't get a day off, a holiday and will never retire from the job they do.
15.   The person in front of you is not stupid or less important.
16.   Don't ignore non verbal children.
17.   Lose your ego.
18.   Parents all talk to each other.
19.   We don't like inconsistencies.
20.   Acknowledge my letter or e-mail.
21.   Get your head out of your backside or you'll miss something.
22.   Don't use my child as a guinea pig.
23.   Don't talk to us about the cost of a drug. Our child is priceless, so it's irrelevant

Soon other mothers chipped in too, with things like this: "If you call yourself an Autism Specialist, find out what autistic children actually can and can't do and don't then ask them to do the impossible." "Please don't ever again tell my six year old disabled child that he is naughty", "Don't tell me my Autistic child can't be autistic because he hasn't touched any of the walls yet", "Don't insinuate that I must be a bad parent". The debate went on for days.  Dozens of mothers, all intelligent, sensible and grounded, sharing their stories of how the NHS short-changes our children time and again, and how we smother our anger with graciousness to get the best we possibly can on behalf of our children. 

I am talking specifically from my own experience as a parent of a disabled child. I am sure it is also true of many other cohorts of patients, as evidenced from the number of recent NHS scandals about poor patient care. It feels like it's been a very long time since true patient care was at the core of the NHS values, although there are thousands of individuals working within the NHS who are doing their absolute best, in a working culture that doesn't always seem to actively support their best efforts. 

Has the NHS become too big a vehicle to be able to deliver compassionate care in every situation?  Has the University-led training of nurses promoted an academic framework at the expense of good old-fashioned basic care? Of course we want highly-trained, competent nurses, but kindness must remain at the core of everything they do.  

Are there too many people expecting far too much from an overstretched service, causing an unconscious resentment among some staff members? Do we as a nation love the NHS so much that we have put them on such a towering pedestal and given them so much glory that they can, in some thankfully extremely rare cases, literally get away with murder?

We have to ask ourselves some difficult and painful questions. We have to share experiences and ideas. We have to expect the very very best from our National Health Service. They are public servants. We are the public.  The dynamics need to shift towards a better quality of care for everybody, with a zero tolerance of poor care and unprofessional standards. Patients should be able to feel safe in complaining about poor service, without fear that there will be a closing of ranks and a universal hostility towards anyone who has dared to speak a less than popular truth. 

The politicians pontificate about the state of the NHS and what can be done, yet many of them have private medical insurance and little if any experience of service delivery at the coal face. Nobody ever asks us what could be done to improve things. Give me a bunch of 10 mothers of disabled children, and we'd give our best shot to have it working efficiently and effectively within days, with a complete change of culture among staff too. Lets face it, with the crises we face on a daily basis with our children, and the breadline poverty levels on which most of us survive, sorting out the NHS might be a piece of cake with icing on the top!

The bottom line is that care costs exactly the same, whether it's good care or bad care. In fact good care is more cost effective because fewer mistakes are made and it's more likely that the right decisions will be made from the very beginning. 

I always thought things couldn't get any worse when Toby was still under the Paediatric Team, being cared for by sometimes as many as 14 different Consultants, each only interested in a particular mechanical part of him. So much for holistic care. As he got older, it got better, and we were only seen by 8 regular Consultants. By then, I'd managed to cherry-pick the very best ones, and he had an excellent team. Toby's condition is so rare that he is the only known person in the world with it, which meant that we always saw the Consultants themselves, with each one wanting to see him at either 3, 6, or 12 month intervals. It was tough going sometimes, with an appointment at least once a week, but at least we knew nothing would ever be missed. 

Well, as he turned 18 last year, one by one, they each discharged him to the care of his GP. This was scary enough because our GPs just don't really know him; Toby saw Hospital Consultants so often that we've barely had to visit our GP at all throughout his childhood. Whenever Toby has been poorly, he has crashed so fast that he's had to go straight to hospital.  

Those frequent hospital visits are now handled by our GP Practice. That will work for acute health issues that present in a way that are obvious to others, but Toby needs more than that. He is non-verbal, he is severely intellectually impaired, and he has means by which to communicate on-going but invisible pain or any new symptoms he may have developed. More significantly, this reduction in the constant monitoring of his health will coincide with Toby leaving home and moving into a care facility. Even the very best carers won't have the experience or intuition to spot the nuances of any change in behaviour that I might notice, which could signal a health concern. 

What do we get instead? An annual event called a "Learning Disabled Person's Healthcare Check", an annual event. So the kid-glove monitoring he's always had by seeing a Hospital Consultant every week or so has now been reduced to once a year.  Last week I discovered that these annual checks aren't even handled by the GPs themselves. Not even by the Practice Nurse. No. A Healthcare Assistant, with no training and only a few months experience carried it out. The outcome? They have told Toby to eat healthily and take exercise. Great advice for a young person who is gastrostomy fed and whose mobility is so reduced that he is part-time wheelchair user. 

Words for once have failed me completely. 

So over to you, what do you think? What are your experiences of the NHS, good and bad? How can we work together to make the NHS something we should all be incredibly proud of once again? 

I love the NHS, I know that without it, neither Toby nor I would be alive today. I love it enough to want it to be the very best it can possibly be. 

A few months after I wrote this, I wrote a book called The Special Parent's Handbook, to try and make things easier for the next generation of families with disabled children. In it I've shared everything I've learnt in how to make things easier, particularly when working with the team of staff who support our children in education, health and social care. 

It is now also being widely read by those who work with our children, and I've had considerable positive feedback from these professional members of staff about the book, and how it's helped them to better understand the issues facing families like my own. 

The Special Parent's Handbook is available on order from any bookshop or from Amazon, and there's a Kindle version too. Here's the Amazon link if you'd like to buy it. 

I also have two Facebook Pages, both posting the very best information, support and news, one for those interested in issues concerning disability,

 The Special Parent's Handbook Facebook Page

and one for those with an interest in cancer, 

Coke Floats and Chemo Facebook Page

It would be great to see you there! 

Never-ending

With three weeks experience as a dog-owner, I've learnt an awful lot of new things, one of which is never buy a completely black dog and expect to take decent photos of him that actually do him justice. Here are my best efforts, but Steve is actually much more beautiful, cute and adorable looking than any of these pictures. It's very lucky that he does look so gorgeous, because he is very naughty, mischievous and has the soul of an anarchist, but those puppy-dog eyes bail him out of trouble all the time. 

.  

 He bites and chews everything - furniture, skirting boards, floors, whatever anyone is wearing, and best of all, he managed to bite all the way through the charging cable of Toby's Galaxy Tablet, which caused untold misery and heartache. We are all covered in teeth marks and scratches, and I won't even mention his remarkable ability to poo and wee constantly and everywhere. 

He's now had his jabs and his microchip, so only another two weeks before we can take him out on proper walks to burn up all that energy - I say we, it won't be me, because I'm still barely able to walk more than a few steps before having to sit down and recover.

 On the plus side, he is very friendly, makes a huge fuss of everybody, and has a lovely temperament most of the time. It's amazing how companionable he is, you could never feel lonely with him around. 

It's been a very tough week quite apart from the chaos and mess that Steve creates all by himself. The rounds of medical and professional appointments has been a marathon, 16 in total, each one raising new issues and managing to add stacks of yet more admin type things to do to my ever-growing admin mountain, which now takes up 7 storage boxes. Forms, letters, emails to write, historical paperwork to find, issues to address - it's both endless and mindless, and I'm almost at the point of losing the plot completely, and sorely tempted to take a match to it and dance around the fire while it burns. However that would only be a temporary solution - I really would need to brick up the letter-box, cancel my internet subscription and  move to a desert island to completely solve the problem. Or sell the children. Or die of cancer. 

Dying of cancer has been somewhat uppermost in my mind lately. For nearly a year my life has been dominated by cancer treatment that has been very hard to deal with, and I'm now left with feeling so weak and ill and shattered all the time that I feel like 10% of the person I used to be. On top of all of that, the radiotherapy burns are very debilitating, both in terms of pain and  mobility. Being a mother to three children who all have varying degrees of disability and special needs is beyond a full-time job at the best of times, and we just seem to lurch from one crisis to the next on a week-by-week basis. It means that my cancer is about 8th or 9th on the list of priorities at any given time, which is a mixed blessing. At least I don't get time to obsess and get depressed about it all, but neither do I get the time to rest, relax and recuperate, which is essential to cancer recovery. So this week wasn't really the best week to read a piece of research that indicates that 30% of breast cancers pop up all over again, and that when that happens, it often means a very poor prognosis. I don't even know yet if all the chemo and radiotherapy has banished both my cancers completely, so to see in black and white how prevalent recurrence is wasn't the most cheerful moment of the week. 

Then there are all the issues that all these appointments bring. If you don't have disabled children, you may think that the professionals we have to consult are just that, professional, and that with their knowledge and experience they actually make our lives easier. Well, no and no. Some, in fact most, are excellent, with good will and well-meaningness exuding from them. However, just in any other walk of life, there are some very difficult, tricky characters who just make a really difficult situation a thousand times worse. It is this end of the professional spectrum that I'm having to deal with at the moment. A totally unnecessary set of very stressful situations are being played out, and I'm left feeling vulnerable, frightened, angry, rageful, shocked and horribly sad. To work our way out of this will mean a huge amount of research, emails, meetings -  and it's all so scary, particularly coming at a time when I really don't have the resources to fight our corner like I should normally be able to. 

So WM has come up with a solution, aided and abetted by my lovely friend, Anita, of the Cancer Photo Shot blog fame. He is whisking me away for the weekend, and Anita is moving in to keep the balls in the air here at home, and to wipe up Steve's poo by the bucket load. 

We're off to an amazing hotel on the seafront in Bournemouth, called The Grove and run by Macmillan, it's especially for people with cancer. 3 nights of just stopping ahead and I just can't wait. In a cancer-friendly environment I won't get the stares I might get elsewhere because of my bright red burns and my bald head. No one will bat an eyelid if I never leave the hotel and just curl up and read a book or several. However if I do want to go out, I can hire a mobility scooter! How cool is that...... I can be a menace on the promenade!

This week we only have 9 appointments so it will be a bit easier. I finally got around to seeing my GP this morning about the Goitre they discovered 7 months ago. A whole new set of tests and treatments to look forward to, now how exciting is that? It actually might be...... there is a very long-shot that with proper treatment all my extra weight might just fall off effortlessly..... but then again it might not, but I'm holding on to that thought to get me past the blood tests and needles that I'll need. 

We took little 10 week old Steve to the vets on Saturday, where they used an elephant sized needle for his microchip, and he totally put me to shame. The vet warned us to expect pitiful whelps of pain and distress, and Steve didn't even murmur - he was so brave. I really wish I was too. 

Adventures with breast cancer: A funny old week

Adventures with breast cancer: A funny old week: There is so much that's happened this week- good, bad, scary, funny and kind - that I really just don't know where to start. I always try to...

A funny old week

There is so much that's happened this week- good, bad, scary, funny and kind - that I really just don't know where to start. I always try to tell it as it is, but without compromising anyone elses privacy by revealing anything without permission, or which might come back and bite us on the bum. That's why I use a lot of pseudonyms - "WM", "Mr Lovely" and "Mary Poppins" for instance - they know who they are, but the rest of the world doesn't necessarily need to.

I am particularly cautious about protecting the privacy of my kids - they each have far more to cope anyway with their special needs and disabilities, and all three of them make me burst with pride as to how well they cope. They certainly don't need their lives laid bare for worldwide consumption.

We have struggled on for 6 months since diagnosis, making it up as we go along, and I suppose it was all going to fall apart at one stage or another, and this week it did, with very serious issues affecting two of them. Each situation would have been traumatic at the best of times, but two of them developing within 24 hours, during the weekend before my chemotherapy Monday, has stretched my coping mechanisms to the limits. These issues are both going to run and run for months and will take a lot of energy, commitment and gentle handling to ensure the long-term well-being of both of them, and I'm still reeling in shock, and trying to get my head around what needs to be done for the best. Just because life throws a life-threatening illness at you doesn't mean it doesn't also enjoy throwing another whole pile of stress your way too, and I am also acutely aware that, at least in part, both these situations have been exacerbated because of my cancer. 

It is widely accepted that battling cancer is often the toughest thing people will have to deal with in life. In my case, parenting three disabled children has been much, much tougher. Over the years, though, they have taught me stacks in terms of resilience, optimism, patience (well perhaps that one still needs working on!), resourcefulness and goodness knows what else, which is also probably helping me deal with the cancer nonsense a bit better too. Being a single parent to 3 kids like mine is an excellent crash-course in disaster-management, and I gave up expecting life to be easy a very long time ago. 

When I was a very little girl, I went to a convent school, where the nuns used to wax lyrical about how, if God loved you enough, he might be kind enough to give you a vocation, so you could become a nun for the rest of your life, only wear black, never go out, never look at boys and pray a lot. I was six years old, and this concept made me take up praying as a hobby in total earnest. "Please God, I'd be a rubbish nun, and I want an a really interesting, exciting life". Of course, I wanted him to make me Madonna,with untold fame, fortune and privilege, but she must have got in first because she is exactly a year older than me. At least he gave me the interesting and exciting life I asked for, so I suggest you are always very careful what you wish for!

So having chemo on Monday, a new type of chemo that has a reputation for wiping you out completely, on top of the weekend from hell, was a fairly interesting experience. At least I hadn't had the time or energy to worry about it at all, so I just turned up and did it almost on auto-pilot, having had virtually no sleep whatsoever in the previous 48 hours. Actually it isn't a bad way to approach it at all! This new chemo seems to work on the bones, penetrating them to search out any naughty stray cancer cells that want to party there. That means that my white and red blood cells are in for a kicking too, and right now, virtually every bone and joint is aching and hurting. Not too bad yet, but it kept me awake most of the night, and it is also causing something called peripheral neuropathy, which is tingling fingers and toes, so holding things and doing things is hard and going to get harder in the next few days. Who knows, I might enjoy it! An excuse to do very very little at all! They also put me on steroids for 3 days, which makes me really hungry and only naughty sweet stuff will hit the right note, so once again, the cancer-curing diet will just have to wait. (Oh yes, there are definitely advantages to all of this!). The sore mouth and funny taste is also back with a vengeance, but I've discovered a new way of dealing with it - coke floats! Coca cola with a dollop of ice-cream, and two straws, and lots of loud, rude sucking noises when you reach the bottom. I've become something of an addict over the past couple of days, and I'm just loving it! My pipe-dream? That somehow coke floats turn out to be that elusive cancer-cure that no one else has ever thought of! OK, unlikely, but not only can a girl dream, but I think it's roughly OK to do whatever it takes to get through all this as easily as possible. 

I had a bit fun last night when two charity canvassers turned up on my doorstep at exactly the same time as I was juggling dinner. Young, eager, fresh-faced but totally prepared to keep me standing in the doorway on a cold November night for ages while our dinner was burning. Big smiles, and "How are you doing tonight?" was their opening gambit. A gift! I stared blankly, pulled off my wig, and said in the thinest, most frail voice I could muster, "I'm really sorry, I've just had chemo, and I really can't do this right now". The expressions of their faces were a total picture! I've never seen anyone retreat backwards down my path falling over themselves with apologies so flipping fast in my life. Achy bones or not, I found the whole thing so funny I had to invent a new "achy bone dance" and performed it for my kid's amusement in the kitchen!

Two real acts of kindness have made this week much much more tolerable. Firstly, I'm off for a heart scan this morning. The next phase of treatment which I'm due to start in a couple of weeks is a new wonder drug called Herceptin. Not all breast cancers respond to it, but I'm very lucky that mine should. Over the past 10 years it has increased survival rates for my type of cancer by well over 30%, so I really want some of it. It means going to have a drip in every 3 weeks for a year, but if that means I survive it's a very small price to pay. However, it can cause severe heart damage, and they need to check my heart is strong enough to cope. The chemo I've already has can also damage the heart, so they really do have to check, and I'll need heart scans every three months for the next year. The normal heart scan involves two cannulas, and they can't use my portacath, so with my needle-phobia I freaked out and really didn't deal with the idea at all well. So my oncologist has arranged for me to go to another hospital where they can do a different test, an Echocardiogram, which doesn't involve any needles. It has just so lightened my load this week. I'm not quite looking forward to lying on the table with my disfigurement naked for them to see, and I'm still really trying to get my head around the whole shark bite scar issue, but it will be OK.

The other lovely thing that happened was a new friend, who lives in Canada and who I have got to know through writing this blog sent me the most amazing greetings card this week. She has taken the time and the trouble to download all the hat photos from the Photo Shoot blog post, and has incorporated them into the most amazing card! Thank you Sharon. Between this post and the next, I'll try and take some photos of it to include, so you can just how lovely it is.

If I'm well enough, off to Drama again tonight, the perfect escape when real life just gets that little bit too much like real life.