Coke Floats & Chemo: Silly Questions

Coke Floats & Chemo: Silly Questions: I'm a very lucky lady today - results day at the hospital turned out to be far better than I'd dared to imagine. The naughty little ...

Silly Questions

I'm a very lucky lady today - results day at the hospital turned out to be far better than I'd dared to imagine. The naughty little lump of cancer on my spine hasn't got any bigger over the last six months, which means that the on-going treatment is working. Totally brilliant news. The only fly in the ointment is a little 7mm something-or-other they've spotted in a single lymph node in my groin. They can't tell if it's another little cancer spread or something innocent like a temporary inflammation, so instead of waiting 6 months for the next round of tests, they aren't taking any chances, and I'm having another PET scan in 3 months, which will decide if it's ominous or not. I've already decided it's not. There's absolutely no point in scaring myself stark-raving stiff every day for the next three months over something that might be absolutely nothing, so I'm banking on the nothing completely for now, and enjoying the counting my of blessings that everything seems pretty marvellously hunky-dory at the moment. 

I do silly things at these meetings like ask daft questions that are enough to frighten the living daylights out of anybody when the answers aren't quite what I was hoping for. Like today, "So if the Herceptin and Letrozole double-act is working so well, does that mean it might work forever?" Why do I let the words roll off my tongue when I really didn't need to know the answer, which is "No, that's very unlikely". Oh. Apparently, after a while, and it's a different length of time for everyone, you just become resistant to the drugs, and they stop simply don't work anymore. I'm such a big mouth sometimes. 

The other thing is that old chestnut, exhaustion, raised it's ugly head all over again. I'm to slow down apparently. Ha ha ha, tell that to the Government who keeps on and on chopping down trees just to generate more and more forms for me to fill in. I'm drowning in them. Not coping at all. Is this David Cameron's dastardly plan to save NHS funding by ensuring I'm crushed under the weight of them so he doesn't have to fund my cancer treatment? 

Today, after a Toby college meeting followed by the Results Moment (which is never a moment - nearly 3 hours we spent at the hospital all together), I got home to 4 urgent forms I've managed to push around the dining table in procrastinational brilliance for several days. 

Firstly, I'm one of a handful of families nationwide who have been picked, at random apparently, to be audited by the Customs & Excise Tax Credit department. Somehow, I have to provide evidence that both Adam and Toby have been in full time education for the past 2 years. Well of course they have, and the government has been paying for their schooling, so there must be an easier way for a government department to collect the evidence.  Over the past week or so I've picked the form up, read it again, and tried to find the elusive "evidence" that fits their criteria. Boxes and boxes of paperwork I've waded through, I've tooth-combed through ring-binder after ring-binder from shelves I can barely reach even from the top of the step ladder. "Why didn't I just ring the number on the letter"?, I hear you ask. Well I did. I think altogether I've rung it around 25 times over several days, and it's either constantly engaged, or you hold on for 20 minutes until they cut you off. 

So I rang them again the minute I got in, and guess what? They answered first time. It turns out they want me to contact each of the 4 educational establishments my boys have attended between them over the past two academic school years, and request that they each send me a letter confirming a whole shedful of specific information. They want this all by next Friday. "Can I have an extension on the date please, because the letters won't arrive that quickly?". I asked. No, they told me, and then went on to explain that they can give me an extension, but not until two days before the deadline, so I'll have to spend all day next Wednesday trying to get through to them instead. 

So I then phoned all the schools and colleges. Only one was able to say, OK, I'll do it now for you and get it in the post by the end of the afternoon. The others want me to put this request in writing. One of them wants me to go into college myself so I can fill out a "Request for Information" form, and I will have to produce proof of ID for both myself and my son at the same time. 

On top of all this madness, Toby's DLA form needs completing all over again. Without DLA he won't be entitled to any of the other services he gets, so it's absolutely essential it's completed, and again, we're nearing deadline. It's 40 pages of mind-numbing questions, with large boxes for you to write essays in each one. A total of 33 essays in all. Toby has disabilities he was born with. They aren't going to go away. Some people are only asked to fill out a new form every 10 years or so. Some people, if they have particular medical conditions that are on some sort of Gold Star type list of favoured disabilities don't have to fill these awful forms out at all ever. 

Yet, for some ridiculous reason, they make me fill out Toby's DLA form every single year, probably just because he is the only person in the world with his particular condition. Maybe they think that this makes him so special that they honestly believe the disability fairy might choose him to sprinkle the "get better" fairy dust over one starlit night in Disneyland fashion? It does make me cross. 

The other horrid thing about the DLA form is that it is so negative. To qualify, you have to write about all the stuff Toby struggles with or can't do at all. Thirty-three times over. As his mum, I want to tell the world how fabulous my children are, not to focus on the tough stuff, and to be honest, DLA time is the pits. Having to describe your bravely resilent and resourceful kids in such a depressing way really gets to you and really hurts. It's not just me, every parent I know dreads the DLA time for exactly the same reasons, and it's simply just not fair.

These are only two examples of about 70 must do's on the admin list, several of which, like the 5 for today, are mega-urgent. 

So how can I rest and take it easy? Admin just sucks out every last shred of my energy and vitality, and totally exhausts me. It's all so pointless, too. Somebody somewhere knows full well that both Adam and Toby were at school and college and what they were doing there, and loads of people also know that Toby has enough disabilities to last a lifetime. In our automated, big brother society, there is just no excuse to expect those of us who are closest to the edge of not coping, like parents already overstretched in caring for severely ill children or those with disabilities,  to fill out endless, pointless, mindless forms for absolutely no good reason whatsoever. 

It's not just the forms, either. Once they are completely, you have to find countless original other documents to go with them, and then photocopy everything before sending it off because you would be staggered at how often these forms are simply lost by the department you've sent them to. Then the filing, mindnumbing, boredom that takes nearly a day a month, or in my case when I haven't had the energy for over a year, seven boxes of forms which will probably take a whole week to file properly. You have to keep everything - absolutely everything, because somebody will ring up and ask for proof of something or other to tick their box or your child won't get the right piece of equipment or the correct help in the classroom. Every parent of a child like mine should be given a  government-funded standard-issue filing cabinet, a part-time secretary or at the very least, a heavy-duty box of matches and a monthly case of very good wine to drown their sorrow in. 

So how can I rest when all these faceless bureaucrats keep clicking their fingers and giving me more stuff to churn out for them? How can I ever put my feet up and drink cocoa and watch daytime television with Jeremy Kyle for company? Basically, how can I ever recharge the batteries enough for my cancer to sleep soundly while I boost my immune system, eat properly, sleep properly and chill? Dream on, because it will be never. 

However, just to cheer me up, here are a few more of the proofs from our photo session a few weeks ago. I'd love to know what you think of them. 

To buy your copy of “The Special Parent’s Handbook please click on the link to the Amazon page below

If no link appears above it may be due to your AdBlock settings

Adventures with breast cancer: The upside of Cancer

Adventures with breast cancer: The upside of Cancer: Thank you for all your positive thoughts on Thursday - they worked a treat because I got through it relatively unscathed, although I was so ...

The upside of Cancer

Thank you for all your positive thoughts on Thursday - they worked a treat because I got through it relatively unscathed, although I was so exhausted by all the nervous anticipation beforehand that I slept the afternoon away. Sometimes there is somebody who works at the hospital who must have been an angel in a previous life,and I had one of these lovely guys easing me through the whole Pet Scan process. Not only was he compassionate, caring, and knowledgeable, he was also one of the very few people who can find my tiny, deeply buried and almost invisible veins at the first attempt, and knowing how needle-phobic I am, he used the smallest paediatric needle there is. Altogether, he made the whole thing a thousand times more bearable than I had ever imagined possible.  

Do you know what the very worst part was? No, it wasn't the needle going in. It was the shock of being told staying perfectly still for a whole hour meant that I wasn't even allowed to talk. Me? A whole hour of silence? Total torture. You should have seen the look of WM's face. He was trying so hard not to laugh, but he also looked like all his birthdays, Easters and Christmases had arrived at once. He never gets much peace and quiet with me around.

He was actually marvellous during that hour. There are definite advantages to having a Clinical Hypnotherapist as the love of your life. He spent the whole time making me totally relaxed (again something I'm really not very good at) and got me floating away in a lovely healing trance.

So it's done and dusted, and I get the results this Friday, so I've got the rest of the week to enjoy - in blissful ignorance as to whether or not I've got incurable cancer.

I'm dreading Friday, but not because it's results day. I've just made an appointment that is much more scary than that. I've got to have a tooth pulled out. So it's cancer news at 11.15 and tooth extraction at 2.45. I've had toothache for nearly a month now, there all the time but nowhere near as excrutiatingly painful as the couple of times I've had major infections. With all the comings and goings lately, I tuned it out and put off making a dental appointment. Last week, the worsening pain made a dental visit essential, and it turns out I've got a really nasty infection, and the reason I haven't been screaming in pain is because it's on a tooth that  had root canal treatment donkeys years ago, so there is no nerve. The dentist gave me antibiotics, but warned me that I'd be lucky if they worked well enough to save the tooth. Root canal treatment a second time is a huge deal, only done by specialists, and prohibitively expensive because it's not available on the NHS. The 5 day course of antibiotics has finished and I've still got toothache. It took me nearly an hour to pluck up the courage to ring the dentist. Then they offered to do it this afternoon. Crikey wikeys. No way Jose.  Sudden light bulb moment and I knew it had to be done on Friday. That way I will worry about the dentist rather than results all week. And if Friday turns out to be a bad day, having a tooth out won't make it any worse, and if it turns out to be a good day, well then I'll be walking on so much happy juice that even having a tooth pulled out won't rain on my parade.

Cancer isn't very pretty, and it's pretty devastating when you find out you've got it. The treatment for it is vile, and  there is new research that shows that nearly 30% of people who survive cancer suffer from Post Traumatic Stress Syndrome, with flashbacks to the horrific treatment ordeals. But there are definite upsides to having cancer too. For many of us, new opportunities open up that would never have been possible without a cancer diagnosis.

Without cancer, I would never have written this blog, which is now read by people all over the world, many of whom have become really supportive online friends. Without this blog, I wouldn't ever had had the chance virtually dropped into my lap to turn it into a stage play, with me also being able to play the title role. Now how exciting is that?  We have less than 4 weeks before we open at the Brighton Fringe on the 18th May. So much line-learning to perfect in such a short time. So few rehearsals to get the timing, the entrances and the props working in the right way. Most of the script has been lifted directly from the blog, but there are one or two new bits. We're calling it "Coke Floats and Chemo", but it could just as easily be called "Breast Cancer - the comedy". Most of it is hilarious, certainly during rehearsals, but peppered with the odd moment of seriousness every now and again because cancer actually isn't that funny. My problem is trying to keep a credible straight face during the darker moments because I'm so busy laughing my head off. 

The blog and the play is only one part of the upside, there are so many others. In June I've been invited to talk at the NIVAS conference, addressing leading medical professionals from around the world about what it is really like to have needle-phobia. It is a very humbling opportunity to maybe just make a tiny difference to the way needle-phobic patients are perceived by those striving to treat them. Most humbling of all though, is the way my friends and family have wrapped me in loving, warm support from the moment this cancer malarkey started. Without cancer, I would never have known just how blessed I am with the people I love.

Other people have had similar experiences to mine. One very dear, new friend I have acquired online is Chris, who keeps a blog called "Chris's Cancer Community", here's the link if you'd like to read it.

http://chris-cancercommunity.blogspot.co.uk/2013/04/all-about-journey-not-destination.html

Cancer has totally disrupted Chris's life too, but doors have opened for him too that wouldn't otherwise have been there without his diagnosis. He writes about it more beautifully than I ever could. Chris is very highly regarded within the online cancer community, because he is continually supportive and enso couraging to those of us who are a bit newer to the whole cancer caboodle than he is.

Then there is Ann, who has become a very dear friend over the past few months.Since her diagnosis, Ann has channelled her energies into a very exciting project giving children educational outdoor experiences at her Forest School, building their confidence and inspiring them to care more deeply about our planet. Last week Ann was invited to a very top-level meeting which included an MP to discuss environmental issues, but it clashed with one of her chemo appointments. Guess what? The other meeting attendees have decided that her input on this is essential, so they are going to re-schedule the meeting around her hospital appointments! It made her day last week to realise that her views are so highly valued, again something she may never have realised without her cancer kick-starting her chain of events. If you would like to read more about Ann and the Forest School, here's the link to her JustGiving page, which has a very good overview of her project:

http://www.justgiving.com/AnnNusseyForestSchool

Back to Coke Floats and Chemo. If you really do want to come along and watch me make an idiot of myself, tickets are selling out quite fast already. We are doing two afternoon performances at the Brighton Fringe on Saturday 18th May, followed by one at the Charles Cryer Theatre in Carshalton on Thursday 4th July. Both venues are very small, and at the Charles Cryer we are appearing alongside other Savvy drama productions so tickets will sell out very quickly. The box office phone number for The Charles Cryer Theatre is 020 8770 6990. Here's the link to get tickets for Brighton

http://boxoffice.brightonfringe.org/event.aspx?evId=4459

Here's a photo of last week's rehearsal featuring the MiniYvonne puppet and WM, with the legendary Paperwork Mountain in the background. 

 Don't even ask what they're doing but it's almost certainly not what you think! My current big ambition? To knock that real paperwork mountain into shape before Friday, Then, I'll have something to celebrate no matter what. 
. 

Adventures with breast cancer: A Scary Day

Adventures with breast cancer: A Scary Day: Today is so scary, I've been in a state about it now for nearly a week. They decided against doing a bone scan to see what these two les...

A Scary Day

Today is so scary, I've been in a state about it now for nearly a week. They decided against doing a bone scan to see what these two lesions on my spine are, and instead they are giving me a Pet Scan, not to see if I've swallowed any dogs or cats, but to find out absolutely definitely if the cancer has spread there or anywhere else. They don't give Pet Scans to everyone, they are really expensive, so they reserve them for those of us who have a real risk of cancer spreading out of control. It's very clever, the scan picks up sugars in the body, and where there is cancer, sugars behave differently. With a bone or a body scan, any cancer has to be half a centimetre to be seen; Pet Scans detect cancer at cell level. 

In some ways, it's a very odd, but strangely exciting place to be. Next Friday, I'll get the results, and whatever they are will life-changing. The good news will be that there is no cancer whatsoever, which will mean that for the first time in nearly a year I can relax and know that all these really gruelling months of treatment will have been worth every moment, and I'll be able to start to put it all behind me and live a long and deliriously happy life. The bad news will be that the cancer is incurable, which will mean that cancer treatment will be an ongoing part of my life forever, and that that I will probably die much sooner than most people. It's like standing on top of a mountain, and waiting to see which way I get pushed, and the whole decision is completely out of my hands. 

That's not the scary part of today. The scary part of today is that, in just over an hour, I have to face my needle fear all over again, but plus plus plus. I am the most needle-phobic patient ever, and if you're new to this blog, there is a previous post you can read where I explained all about my riduculously embarrassing stupid phobia: 

,http://yvonnenewbold.blogspot.co.uk/2012/08/my-needle-phobic-past.html  

They can't use my portacath because the stuff they need to inject is sticky, and would stick to the plastic tube leading into me rather than making it all the way into my veins. They can't even use my arms, because the armpit surgery I've had on both sides means that there may be scar tissue which might prevent the stuff circulating properly. Oh no, my worst fear of all, they are going to   inject into veins in my feet. I've seen some poor people in the chemo room have this done, and it's always scared the living daylights out of me. I've been bursting into tears all over the place all week about this, and lying awake at night frightened witless. I've tried to get it into perspective and not be such a pathetic wimp over the whole thing, but I have failed dismally. 

I'll get there at 9.30am, they will do the needle sticking into me part, and no doubt this will go on forever because they can never find a decent vein until they've poked and stabbed a squillion times. Then I have to lie completely still for an hour to let the stuff circulate and bind with all the sugars in my body, then the scan itself will take up to 90 minutes. So I'll have to lie still and not move a muscle for nearly three hours. Me? Are they serious? If the needle doesn't kill me I might die of boredom. Oh, and I'm not allowed to eat until afterwards - which should be something to take my mind off it and look forward to a yummy lunch, but right now I'm not convinced I'll even live that long. 

I wanted to write about all sorts of things, but time is short and I really have to go. If I get a chance later, and I actually do survive this ordeal and I'm still alive, I'll try and write some more, probably about happy things like birthday parties and stage plays, and maybe even a bit about the language people use to describe having cancer. Wish me luck!