Tommy v Cancer Blog Tour

Good morning!

A bit of a different post from me today.  I thought I’d give you all a break from my rambling to do something a little bit pro-active.  Let me explain…

If you’ve stuck with me since the start of this blog (God bless you if you have), then you’ll know that I found my cancer the day before I met my literary agent.  Well, another author, Tommy Donvaband, is currently going through the same, er, challenges that I am, only he has throat cancer.  There’s a hugely active MG and YA author/reader/reviewer community over on Twitter and they put together a blog tour to raise awareness and support for Tommy.  As an author, a lot of his income comes from talks and school visits, but the treatment he is receiving has robbed him of his voice.  So, the lovely Viv of Serendipity Reviews asked bloggers to review one of Tommy’s books and I offered to be included, as both books and cancer treatment are massive things in my life right now.

So, for my review, I read the first Scream Street book, ‘Fang of the Vampire.’  As a teacher of primary age boys, it was irresistible.  Without too many spoilers, Luke Watson, who is an ‘unusual’ boy himself, is thrown into a creepy neighbourhood, a place where vampires and mummies are the norm.  It reminded me of the Goosebumps books I’d been reading to my students before I finished work, and I kept imagining how I would read it to them…all dramatic pauses and loud bangs.  In fact, it’s first on my list of things to do when I get back to work – I can’t wait to see their reactions!

If you have a reluctant reader in your life, I recommend looking the series up.  It’s definitely a series for little ones to read with a torch under the covers, especially in this stormy weather…

I’d like to wish Tommy good luck and strength for the rest of his treatment…you can do it, though there may be days you feel like you can’t.

There’s some more info about Tommy and the blog tour below, but for now, I’m off for a nap.  Normal (ranty/moany) service will resume later in the week…

Tommy is the author of the popular 13-book Scream Street series for 7 to 10 year olds, published by Walker Books in the UK and Candlewick Press in the US.  His other books include Zombie!, Wolf and Uniform (winner of the Hackney Short Novel Award) for Barrington Stoke, Boredom Busters and Quick Fixes For Kids’ Parties (How To Books), and Making A Drama Out Of A Crisis (Network Continuum).

Tommy lives in Lancashire with his wife and two sons.  He is a HUGE fan of all things Doctor Who, plays blues harmonica, and makes a mean balloon poodle.  He sees sleep as a waste of good writing time.

Website: www.tommyvcancer.com

Patreon Link: http://www.tommyvcancer.com/support/

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Hair Today…

I did it…

pre-cut hair

Before…

bob hair

…after!

Saturday, 28th May 2016 was the first time in fourteen years that I had a short hair cut, and I LOVE it!  My hairdresser did a fab job and was very generous, refusing to charge me for the cut. I think she was just glad to have me out of the place in less than five hours!  The Little Princess Trust got 14 inches of hair, which was tons more than I thought! I played with different styles all weekend, as now the chemo has started, I can’t do anything with it if I want to keep it. (Meaning, I’ll need a wig just to hide the greaseball beneath, ha!)

Chemo started yesterday.  In typical me fashion, I also had an MRI on the same day, so was completely shattered from getting to and enduring two different appointments.  The MRI was the same as last time – read, boob holes – and it’s checking to make sure that my left breast was biopsied in the correct place last time.  When a biopsy of something suspicious is done, but not too suspicious (E.g.not a cancer with teeth and hair, like the Critters),they leave a little titanium clip in there for future scans.  As another biopsy wasn’t taken yesterday, I’m hoping that means they were happy with the placement and the correct part was biopsied last time.  I had a little panic as I slid into the machine, which didn’t happen last time, but this was more of an ‘Oh my God, please let it be okay, I can’t do this sh*t again’ kind of a panic.  I quickly snapped myself out of it, as I knew if I pressed the button to get me out, I’d cry.If I cried, the next time would be worse.

And I had chemo to be getting on with.

So.  1:30pm on Wednesday 1st June (I like that it started at a nice, neat number.  Does that make me weird?!) hubby and I rocked up to the unit where I’d be treated.  I met my oncologist and signed the consent forms, before going upstairs to the chemotherapy suite.  I’d already been with my mum on the Friday, so knew what to expect and honestly, I just wanted to get the first one done! No one knows what the side effects will be until they have it, so I’m curious to see how the next three weeks pan out, to be prepared for next time.

Anyway, I sat on a pink, squishy recliner, while my arm was propped on a pillow and a heat pack placed on the back of my hand in order to get a nice, juicy vein.  Thank God, as in my last procedure (fertility – let’s not talk about that one…) it took them FOUR tries to get the cannula in and that was before they sedated me.  Ouch!  This one went in nice and easily and I was hooked up to a bag of fluid, as the drugs can dehydrate you.

Then came the cold cap.  The nurse soaked my roots and then placed the cap, a fetching hot pink helmet, directly on to the wet hair.  It’s a similar temperature to a freezer and, true to what I’ve read, the first fifteen minutes were the worst and then you surprisingly get used to it.  The cap was pulled really tight, until I had attractive chipmunk face and jaw ache, and left on for half an hour before treatment.

Treatment itself, without sounding too blase about the whole thing, was a breeze!  I annoyed the nurse with questions as she squeezed four syringes of drugs into me (Two drugs, two VERY BIG syringes each) Epirubicin and Cyclophosphamide.  The E-one was red and stung my vein a little, but the nurse massaged it when I told her.  The C-one was clear and very cold, so I got the heat pad back for that one.  There were no side effects as it went in, no dizziness or funny tastes, which I was grateful for.  I think my head was probably too frozen.  The cap stayed on for ninety minutes afterwards, so 2.5 hours in total.  We went home, I managed dinner and so far (touch wood) I’ve just been very tired, so my anti-sickness tablets must be working.  It’s very early days yet though,so anything could happen over the next three weeks.

I was sent home with a bag of ‘goodies’, which contained anti-sickness drugs, a medicated mouth wash and also some injections to stimulate my bone marrow to produce white blood cells and keep my immune system as strong as it can be.  I’m trying to help them along, having a handful of vitamins (C, D and B12) a freshly squeezed orange juice and green smoothie each day.  I’ve heard Manuka honey is great, as long as it’s 20+, so that’s on the list too!  

I did my first injection today and, as I dropped the spent needle into the sharps box, I started thinking about the statistics of cancer treatment.I can’t even imagine how much my treatment is costing, but my God, am I grateful for the NHS!!!  I’ve put together a little list below of my journey so far…

 

Hospital appointments: I’m guessing 40ish – I can only find letters for 30 but a lot have been phone appointments or booked in person.

MRIs: 2

Full body CT scans: 1

Surgeries: 2 minor (20-30mins, home same day), 1 major (8 hrs, 5 days in hospital).

New ‘foobs’: 1

Scars: 7

Injections given to myself: 53 so far.  Approx. 20 more to go (that I know of!)

Rounds of chemo: 1 down, 5 to go!

Number of anti-sickness drugs sent home with: 4

Radiation after chemo: 20 rounds, one every weekday for a month.

Revision surgery: 1 before Christmas.

Post-chemo drugs: 2.  Herceptin injections, once a month for a year and Tamoxifen tablets, 1 a day for 5 to 10 YEARS!

 

A hell of lot,right?

But here’s the best one…

Years left to live my dreams when it’s all over: Countless.

 

 

Next Steps…

Apologies for the radio silence over the last few weeks.  Mainly it has been due to the fact that I’ve had hardly any appointments and have been resting up and healing, which doesn’t exactly make for exciting blog content!  The visits to hospital have started to come in thick and fast again over the last week though, so the cancer merry-go-round is starting up again…

First, a surgery update.  I’m five weeks post-op now and feeling pretty much back to my normal self.  We’ve been to a couple of concerts, had a weekend away (in Wales, so not too far, but still gorgeous) and had friends round for tea and shenanigans.  I’ve had a ton of visitors, all who bring food (my kind of friends) or gifts, and I’m doing everyday things again.  I can even sleep on my side now, which is kind of a big deal.  In fact, last week when I first rolled over and it didn’t pull or hurt, the grin on my face was ridiculous.  Small pleasures, hey?  Oh, and I can stretch too!  Not a full, arms in the air, arched back stretch, but a decent one.  The first couple of weeks after surgery I would wake up and my body would do a tiny little kitten stretch, completely involuntarily, and it drove me mad, especially when hubs started to sing R Kelly lyrics at me…’My mind’s tellin’ me no…’. Those who grew up in a certain era, you get the picture!

Basically, I’ve healed ridiculously well.  My wounds were pretty much closed after week two and I’ve been lucky enough to have no complications with them.  The suture lines are neat and I’ve been massaging my scars and putting Bio-Oil out of business.  I’m really glad I went on a little health kick before surgery and kept exercising, though not as much as usual.  It definitely helped me recover very quickly.  Don’t get me wrong, I’ve had my down days, where I’ve been fed up, cried, felt like I was looking at Frankenstein’s monster in the mirror, but I HAVE TO stay positive.  I have to thank whichever God is looking out for me that I’m alive, that I caught the bugger early and that the rest is now maintenance.

Which brings me to the next step.

Chemotherapy.

Because I’ve healed so well, chemo is right up there on the agenda.  In fact, I start it two weeks today, on June 1st.  I’m pooing my pants, for want of a more sophisticated phrase.  It’s an eighteen week process, where the chemo itself is once every three weeks, which is called a cycle.  So, six cycles all together, one drug during the first three cycles and a second drug for the final three.  My oncologist (cancer specialist) has warned me that I might feel crappy for the days following the infusion (sounds like a fancy cocktail-is really not) and my immune system is going to be blown to smithereens.  She is hopeful that I will deal with it well, though I did wonder if she says that to everyone!  The middle week will be the one where I’m most vulnerable to bugs and infections and by the third week I’ll be feeling okay again, just in time to go back and get blasted again.  Yay!  I will get sore gums and ulcers and my hair might fall out – I say might because I’m going to try the cold cap, so there is a 50/50 chance I will keep it.  I will be tired.  I will probably be sick.  But I have to do it, because if I don’t then the cancer might come back, somewhere else, potentially somewhere worse.  And I do not like the idea of a death sentence hanging over my head, thank you very much.

The cycles will be finished by the start of October, when I plan to get very drunk and eat all the things I’m not allowed to have during chemo (sushi is one – grapefruit is another?!) Then, once my body has recovered from that, I’ll be having a month of radiation.  EVERY DAY, apart from weekends.  The good thing about that is I will be able to drive myself and it’s relatively quick with few side effects.  I’ll look into it more when the time comes, as my head is pretty full at the minute.

Weirdly, I feel better now I know it’s starting.  A couple of weeks ago, I was looking through my hospital paperwork for something and found the information leaflets for the chemotherapy drugs I’ll be taking (Taxotere and Epirubicin for those who are curious/in the know) and I burst into tears.The fear of the unknown is awful and I came downstairs to my husband, asking him hadn’t I already been through enough with surgery.  I am scared, but I want the first one out of the way so I know what I’m dealing with, then I can form a plan to deal with it.  So, that’s how I’ve been keeping positive; I’ve been making plans.  I have a chemo checklist of things which I’ve been ordering, for instance, all of the toiletries I will use once it starts are paraben free and I will only drink water that has been filtered.  I’ve started something called the Miracle Morning where I will take time to meditate, focus on my goals for the day and exercise first thing in the morning.  I’ve even started writing again.  Plus, I entered the ballot for the London Marathon – wish me luck!

Oh, and I’ve booked a hair cut.  I’m going for a longish bob (which I last had at the age of eighteen) and am going to donate the part I cut off to The Little Princess Trust, who make wigs for children having chemo.  I can’t think of anything better to do with it.  So, if you see me around a week on Saturday and I have short hair, please tell me how fabulous I look, even if I really look like I’m about to go and sing a solo with the church choir.

In retrospect, looking back over what I’ve just written, some of these things may sound vain or silly, but it’s helping me cope.  Knowing I’ll have a gentle shampoo that might stop some hair falling out keeps me positive. Ordering face cream that will stop me from looking like I’m a ninety year old bald man is pretty nice, too.  So, please don’t read it as vanity.  Read it as trying to keep hold of a normal life, and remember that I have to look at myself every day.

Before I go, I want to do a couple of shout outs.  I have a friend who I’ve known for a VERY long time, but who I don’t see that often.  She lives abroad and we’ve formed different friendship groups as the years have gone by.  I met her and another old friend two weeks ago and she gave me a card, filled with donations from people, some of whom I haven’t seen in years.  She had set up a ‘secret group’ to fund me getting a decent wig, should all of my hair decide it’s had enough.  It was so overwhelming that I haven’t gotten around to saying thank you to everyone who contributed – it’s a very strange feeling to be on the other side of fundraising – so THANK YOU to Katrina’s secret wig gang.  The fact that you are even thinking of me is very humbling and I feel very blessed.  Thank you.

The second one is to my lovely work colleagues.  I was visited by the lovely Lucy, present genius, last week and they had bought me a beauty set that has been specially formulated for people having chemotherapy.  It’s gorgeous.  If you know anyone in the same situation as me and you’d like to get them something to ease them through it, have a look for Defiant Beauty online – I was over the moon with it.  Thanks BGSB, I miss you guys!

Last one now – promise.  My gorgeous family and friends, I love you.  Thanks for cooking Sunday dinner, visiting me with food and flowers, watching movies with me and texting to check how I’m doing, even when you’ve got your own stuff going on, like giving birth.  You’re all wonderful.  Thanks most of all to my hubby, for putting up with me, for making endless cups of tea and learning how to use the oven 😉 For telling me I’ll be fine and for wishing you could protect me from it all.  You are the best and, despite cancer, I know I’m a very, very lucky woman.

If you’re still with me through the vom-fest above, wow, well done you!  I’ll post again soon now things are rolling.  Just a reminder about RACE FOR LIFE to people who have been asking – if you want to register for the 5k on Sunday 17th July, if you do it through the link below you’ll automatically be entered into my group, so we can all run (walk, hobble, etc.) together.

https://raceforlife.cancerresearchuk.org/rfl/forms/race/enter.jsf?groupNumber=XZ7694

Mwah!

 

 

Murphy’s Law.

You know the saying, ‘What can go wrong, will go wrong’?

Well…

Let’s start at the beginning. Last time I checked in, I was prepping for a small surgery. Well, that went without a hitch. Honestly, the worst bit was all the hanging around before hand (I arrived at hospital at 8:30am and was operated on just after 4pm😴). I had a radioactive injection (!) and then sat in the day patient waiting room, until I was called in to get changed. I donned my glamorous gown and a very fetching pair of bottle green compression stockings, before being walked to theatre. I lay on the trolley, had a cannula inserted into my hand and took some deep breaths. 

Then I woke up. All done and feeling nice and fuzzy. I’ve never been so relieved! I took a few days to get back to normal, as the anaesthetic really kicked my ass in terms of tired/wibbly-ness, but now I just have a small incision under my armpit. I took the weekend to recover and geared up for appointment with my surgeon on Monday morning.

Which is where Murphy’s Law kicked in.

I arrived at The Christie with my hubby and we were seated in a little room to wait. I was already pretty anxious, after all, this would be the last time I’d get to chat with the surgeon before the actual op, so the fact that hubs decided it was a good idea to have a rummage in the supply trolley didn’t really help… Anyway! We waited for a little bit and when the surgeon arrived he had bad news.

He wasn’t allowed to do the operation and, to be completely fair to him, he was not happy about it.

I still don’t know how I felt at that moment. I nodded and asked questions – hubby was pretty mad. Essentially, it boiled down to politics between hospitals. Two surgeons would be working on me on the day, one undertaking the mastectomy and the other performing the reconstruction. They come from different trusts but have worked together in the past, so there never seemed to be an issue. This time, however, only one hospital would be paid for the procedure-and it wouldn’t be The Christie.

So they cancelled my surgery.

I think I’ve been through the full range of emotions since then. I’ve been so angry I could have set several small fires (erm, not really for any law enforcement people reading), I’ve cried, I’ve had the ‘Why is this happening to me’ rant. I just couldn’t believe that a hospital that prides itself on its excellent standards of care, would cancel something that I have now found out is classed as an emergency operation. Emergency. As in, life saving. As in, if you don’t get this shit out of me ASAP I’m going to be a very poorly person. I kept thinking, if this was a book, or a movie, I’d find out the name of the person who wouldn’t sign for my surgery and I’d go round to their house. I’d show them that I’m a good person, that I deserve to have this surgery and they’d be won over by my passion and my sassy attitude. Then they’d sign the paperwork with a pen I just happened to have handy.

Unfortunately, real life doesn’t work like that.

So, what now? Well, I’m glad to say that my consultant is the most organised man ever. By Tuesday morning, he had me booked in with another surgeon at another hospital, which I’m delighted to say is one of the best in this field. They have women from all over the UK there for this kind of surgery 3 or 4 times a week. When I got the call, though, I cried after. The surgery is a day earlier than planned, which I now know is amazing, and they have gone above and beyond to accommodate me, but I initially felt like I was losing a day of normalcy. It’s scary to think that my body won’t be my own for a while and I hate the thought of being so dependant on people, but I’m so grateful to those who I know I can depend on. The thought that some people go through this with little or no support breaks my heart, and I know how fortunate I am. Unfortunately for them, I also know how stubborn I am, so apologies for being a nightmare in advance!!!

So, Murphy’s Law…what can go wrong, will go wrong.

But I’d like to make an amendment to it; Cynthia Murphy’s Law. What can go wrong, will go wrong…but there will ALWAYS be a solution. Otherwise know as Serendipity; Finding something more suited to your needs without looking for it.

I met my new surgeon this morning and he was brilliant. He even has the same surname as my brother and sister-in-law, so that has to be a good sign! I feel more confident about this surgery than I ever have and that, in itself, is a blessing. All of those prayers and positive energies are doing their thing, so keep them coming for Tuesday please!

I have some lovely plans for my last pre-op weekend and fully intend to enjoy it, I hope you all do too and thanks for reading…

Cyn x