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!

Adventures with breast cancer: Radiotherapy legacy

Adventures with breast cancer: Radiotherapy legacy: Five whole weeks since I last wrote a post - apologies to all. Lots of reasons, including laptop malfunction and being rushed off my feet co...

Radiotherapy legacy

Five whole weeks since I last wrote a post - apologies to all. Lots of reasons, including laptop malfunction and being rushed off my feet coupled with total, utter, mind-numbing exhaustion. Oh, and a little puppy had a hand in it too - our lovely Steve has been here for 2 weeks, and is turning out to be a really effective distraction to getting anything whatsoever done. Steve is adorable, but very naughty. He also is a hundred miles away from being house-trained and toilets everywhere with very impressive speed and productivity. My new fashion accessories seem to be plastic poop-bags and kitchen-roll in one hand, and a disinfectant/deodoriser in the other. 

We've had some training successes with Steve already though. At nine weeks he knows his name and will come running when called. He knows "sit", "stay", "off" and "bedtime", he's pretty good at fetch but still sometimes runs off with whatever it is, and we're working very hard on "no biting". He loves feet and slippers, and over the last few days is really hurting and sometimes drawing blood. House training has completely bypassed him though, and it's difficult because, due to his vaccinations, he's not allowed outside for another three weeks. He's like a little hoover, nose to the ground and swallowing everything he finds, which sometimes makes his little poo parcels very interesting. Most interesting was finding a five-pence-piece in one last week. WM was dead impressed, thought I was doing really well with his training, but wanted to know how long it would take me to train him to poo fifty pound notes. Well even if he did, I'm not going to be the one to retrieve them and clean them up. 

Radiotherapy has finished at last. I really didn't enjoy any of it, but I did get to know some of the girls who worked there quite well, and they really are lovely, as well as being very clever. They warn you to moisturise and moisturise like it's going out of fashion, and I did do it every now and again when I remembered, but mostly I forgot. I was doing so well, skin wise though, hardly a mark at all in terms of pinkness by the time the sessions finished last Tuesday. I was feeling quite smug, knowing I'd got away with it. Then on Friday, ouch ouch and triple ouch. Slight pinkness turned to angry red, with some bits going purple and nearly black. Blisters and cuts have developed, and this morning, the nurses in the chemo room saw it when I went for Herceptin, and sent me back to the Radiotherapy dept to be seen. It turns out that it's quite serious, and I'm now having to have dressings on the worst parts of the burns with special prescription preparations lathered on underneath, with the dressings needing to be changed 4 times every day. My skin in in such a bad way that the dressings can't be anchored with tape, so instead I'm wearing a huge piece of tubi-grip like a boob-tube to keep everything in place. I came home with an enormous bag of dressings, lotions and potions to keep me going for a few days. The weirdest thing is that, since my mastectomy and lymph node removal the nerves have been destroyed in that whole area so I can't feel anything whatsoever there. Luckily that's where the worst of the burns are, so it's quite surreal to be able to look at them and wince, but not feel the pain. The burns extend from both arms, armpits, right across my chest, my neck and some spots on my back too. 

I've been told that these burns will continue to worsen for another four weeks, and then it will be several weeks after that before they start to get better. That's an awful lot of wasted time ahead in dressing them several times a day. Meanwhile, lifting, stretching and any movement in that area is severely restricted, which, since on one side I'm not getting any pain to remind me to go easy, I have to be very disciplined about it. Worst of all, for several weeks, I won't be able to wear a bra, which means that I can't wear my false boob at all, so I'll be lopsided for everyone to see. Factor in that thanks to Letrozole,  the new 5 year drug that I've started, my bones are creaky stiff and making me stumble about like I'm 108. I'm still virtually bald, although it's growing back to the stage where I look like I've escaped from the type of institution where they care for pyschopathic madwomen who enjoy killing innocent husbands. I'm now half titless for the forseeable future, some of the burns are visible on my neck whatever I wear to try and cover them up, and I'm permanently attached to the Steve-related fashion accessories as already mentioned.  It really is quite a look, but I doubt Vogue will be courting me to be their cover girl just yet a while.

Rushed off my feet as always running around doing medical appointments and stressing out about the ever-increasing paperwork mountain. This week is a fairly typical one - between today and Friday I have 16 appointments, mostly medical ones, both mine and the childrens'. Just trying to stay on top of everything is totally exhausting, and it's not helped by the fact that some of the professionals are working against my family instead of for them. There are issues going on that I can't discuss here that are causing untold stress and anxiety, sleepless nights and total frustration - all the things cancer patients really don't need. 

Good fun things are happening too. "Coke Floats and Chemo" is well underway in rehearsals. It's the stage play of this blog, and it's coming together very nicely, and giving me to chance to vent my spleen and say things to fictitious characters that I'd love to say to certain real people. It's shaping up to be quite comical in places, with the odd dollop of seriousness too. It's really very odd to hear my words in other people's mouths, and watch my life unfold with different perspectives and interpretations, but so far it's all been really fun, and possibly even a tad therapeutic. 

I've also pushed the financial boat out a bit. Obviously, Steve, the most over-indulged dog on the planet, is burning a big hole in the wallet, but I've also bought a new car and a new laptop. The car is a Hyundai i20, obviously bright vibrant red, and will allow me to get a bit of independence again. My lovely old trusted steed, the mad red Multipla, has sat outside on the drive for six months undriven. It may be 13 years old, but it is still a really good runner apart from one thing - an electric problem that has haunted us both for 3 years. Something drains the battery when it's turned off. To the point whereby if it hasn't been driven for a few hours the battery needs totally recharging. For the past 3 years I've been plugging in car chargers to long extension leads, trailing them out the window and opening the bonnet and connecting the whole caboodle every time I needed to go anywhere. Since I've been ill, I just haven't had the resources to do it. It's time to scrap it, and it will be stripped for parts then crushed, which feels like I'm totally turning my back on a well-loved family member that's carried us to all sorts of fun places since the children were tiny. But hey ho, the new car has some lovely gizmos like a CD player! Never had a in-car one of those before. Air-con, electric wing mirrors, really useful nooks and crannies for things like mobile phones and coffee cups - I think I may fall in love with it in time. 

The laptop is marvellous, but still a bit scary. Only had it a day or so, and this is the first proper thing I've done on it. It's Windows 8, which all looks so shiny and high tech, but I need to spend some time doing tutorials to get my head around it. With 16 appointments, I doubt it'll happen this week. One of my kids has already discovered a really addictive game on it which I'm becoming quite partial to,  involving bits of string, bubbles, frogs and spiders, so I can see a lot of time-wasting distraction moments ahead. 

All I really want to do is sleep. For hours and hours every day. Just to try and get my body back on some kind of even keel after the shocks and pharmaceutical abuse it's had to deal with over the past several months. Just after lunch today I took some washing up to put away in my room. Don't quite know what happened, but 6 hours later, WM came in to tell me it was 8pm, and he'd cooked dinner and there was a cup of tea downstairs waiting for me. I just wish that life would just stop and let me get off the treadmill for a month of two so I can really try to get better. Just because I have cancer, the responsibilities don't stop, the paperwork still piles up ridiculously, and the world and his family seem to want to click their fingers and have me turn up in their offices for appointments at their beck and call. 

Cancer is a funny old thing. Once it's come visiting, it's like one of those guests that won't leave without a fight. It wants to take over your house in the end, getting bigger and bigger and taking up more space all the time. I'm beginning to come out the other end of a medical marathon to evict it, and I need space and time and recovery to make absolutely sure that my body is strong enough to ensure it doesn't creep right back in all over again. Deep deep down, I know that we're nowhere near home and dry yet, and that the cancer is still there waiting to pounce when I'm least expecting it. When cancer comes back for a second time, it's stronger and I'll be weaker. It tends to be much more serious the second time, and prognoses are much poorer generally speaking. So my next challenge is to work out how to step away from the fire-fighting car-crash that my life seems to be all the time, but without letting anyone down and still keeping all those balls in the air. Easier said than done, and any suggestions really warmly welcomed, please.