Ups, Downs and Why No Amount of Time is Ever Enough

I haven't blogged since just before my last chemo cycle.

The truth is, I've had a pretty tough time over the past few weeks. I know there are ups and downs; good news and concerns, strength and fears.

On the day of my last chemo session, which was also my fortieth birthday, my Oncologist told me that the chemo was working. The latest CT scan had shown some nodes now clear and the soft tissue mass on my chest wall had shrunk.

This was exactly what I wanted to hear but was tempered with the reassertion that she doesn't think it will go completely and that we will be going along with her original plan to "manage" my cancer "for as long as possible." No matter how positive or determined you are, this phrase just makes sure you are face-to-face with your own mortality, immediately. My children are twelve, nine and seven; no matter how long "as long as possible" is, it will never be long enough. So, in the absence of tangible figures, my mind goes into a frenzy of calculation.

Five years: nowhere near long enough, the children will still be children. Ten years: no. Freddy will be seventeen and making some of his most important life choices, Harry will be twenty-two and Betty nineteen. Absolutely the wrong time. Fifteen years: Harry will be twenty-seven, embarking on who knows what, settling down, maybe thinking about children; Betty will be twenty-four, I remember me at that age, so much still to learn, broken hearts and mistakes of early adulthood. Freddy will be twenty-two, embarking on a career and becoming the man he has been growing into, under our watchful eyes for all these years. So no, fifteen years, not enough.

Twenty years, I'll be sixty, Tim sixty-four and the children will be thirty-two, twenty-nine and twenty-seven. There may be grandchildren, huge life events and the opportunity for Tim and I to enjoy retirement and that golden time together. Why should we miss out on that?!

So that is what my brain has been up to over the past few weeks and I didn't really want to write it down at Christmas and bring down the festive mood. It isn't that I have not had a lovely time, I really have. Giddy children, lovely festive times together with the family. It is just that the fear pops up at the exact times you don't want it to.

Today was chemo cycle five of six and the Oncologist repeated the assertion about "managing for as long as possible," she also said there could be something left that wasn't growing or that was scarring but we wouldn't know that until two or three months post-chemo. So there is hope and this is what I must remind myself of, every single day.

Chemo is getting harder, today three attempts to get a needle in to insert the cannula and one popped vein. I felt like a pin cushion and have huge bruises over the back of my hand and wrist. The pain was awful but I kept thinking of the cuddles I get from the children, the enormous amount of love I am fortunate enough to have in my life, from them and from Tim, who truly is my rock. This made it more bearable and always gets me through.

I will never give up this fight. I genuinely don't know if it is one I will or can win but I promise it is a fight that I will do my absolute utmost to. I owe it to Harry, Betty, Freddy and Tim. They deserve my best efforts in this.

So now, as I have "supper" - sixteen of my forty-seven tablets a day in the days after chemo - and settle down to sleep, I know I am lucky. I am lucky to have such incredible support from my family, friends and my amazing Twitter Army! It all keeps me going in these times of fear, worry and helps me to find that fighting strength.

So to everyone who has sent me a message of support, no matter how long or short; sent me flowers, port, cheese presents or knitted me a hat! To my amazing friends who have looked after the children while I am having treatment, so Tim can be there with me; to my family and those friends who are always there for me, whenever I need them... Thank you.

Something is Better Than Nothing.

Support is so incredibly important when fighting cancer. I have said on Twitter, quite often, that I cannot properly explain how much every single message of support helps. It really does though.

The positive energy that comes through with every kind word, even if just to say, "Hey, thinking about you!" is incredible. It is almost tangible, I can feel it holding me up, carrying me along and it helps me to stay positive and able to keep up the fight.

Negative energy brings me down enormously; I'm not saying anyone should walk on eggshells around me or not be who they are. I do believe that I need to handle negativity better though; I can't expect everyone around me to paint a smile on all of the time - especially not my children. When they play up and I tell them off, their telling me I'm the worst Mom in the world, is normal. I'm glad they don't have "Mom has cancer!" right at the forefront of their minds all the time. That would be just awful.

I am blessed with wonderful family and friends, especially my husband Tim, who has the daunting job of keeping everything together and does so remarkably.

I am fortunate to have people who understand that cancer does not define me. They have rallied fantastically. I know some people are frightened of "the C-word" - almost as if they think they could catch it if they say it. In my experience, it is worth the risk of saying the wrong thing, rather than saying nothing. Even saying the wrong thing, shows you care enough to say something! As Martin Luther King Junior said:

"In the end, we will remember not the words of our enemies, but the silence of our friends."

And that, is the truth.


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Differences

Things I do differently, now I'm a chemo patient.

1. Shopping (food)

This would involve whirling around the supermarket, pushing a trolley that became increasingly full, until it was difficult to corner. I would fill it with squashable stuff that would mean it was almost impossible to put large heavy things into it; like wine and bottles of pop, that always seem to be in the very last aisle!

Now, when I am on a "good week," (week 3 of the cycle) I wander, rather than whirl and sometimes have to have a rest when I have finished. For a week to ten-days following chemo, it's an online shop. Usually though, my very amazing husband Tim does it.

2. Shopping (Clothes)

How I love proper, girly shopping trips. I have been known to arrive at Meadowhall at opening time and mooch around; shopping/coffee/shopping/lunch/shopping/coffee, etc. until almost closing time.

Now... Much more coffee, far less mooching!

3. Work

I love to work. Always have done. I frequently work long hours, carry on at home and at weekends. A usual day begins at around 08:30 and ends any time between 18:00 and 20:00. Well, it did, and still does on good weeks.

I am very lucky to have a boss who is incredibly understanding and this helps more than I could explain. On week one, I work from home, punctuated with naps and I work when I feel up to it and as dictated by my steroid-affected sleeping patterns - if this is from 9:00 pm until 01:00 am, so be it. Week two will find me arriving at around 09:30 am, as I cannot rush around in the morning; it takes me longer to get going. I also need to be dropped off and picked up again because I struggle with the walk up the hill to the car park. If I have to take this on, I end up stopping halfway taking huge interest in the window of the bag and shoe shop, (any excuse) while I catch my breath.

4. Wash my hair.

Previously, I did this in the shower. John Frieda shampoo and conditioner, mousse, drying, gel spray, shiny spray and the lovely smell of hair products.

Now, I take my hair off and brush it. Then, I fill the kitchen sink with hot water and add fabric softener, I like Comfort Pure for this. I then swirl my hair around in the water, before lifting it out and rinsing it. It is then hung to dry in the laundry room, with the lovely smell of freshly-done washing.

There are many other little things I do differently now, such as writing EVERYTHING down, having to concentrate intently on conversation - I am so easily distracted, I can forget what I'm saying, halfway through a sentence! I know many people talk about about "chemo brain" and I can definitely confirm its... Ooh there's that lovely Colin Firth chap on my tellybox... What was I saying?


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Conker Strings & Heartstrings

Today, while clearing out the sweet wrappers, screwed up bits of paper, conkers and toy cars, from Betty's school bag, I came across this card.



When I opened it, it brought tears to my eyes.

Betty is nine and the card is from one of her classmates. What a wonderful friend she has in Olivia.


Nothing I can or need to say. I just wanted to share.

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Wiggle It

Yes, I'm talking about hair again. But I know from personal experience and from speaking with other cancer patients that the hair loss is a big deal.

Last time, I didn't lose all of my hair; this time I have. Last time, it was summer, so wigs were itchy and made me hot. I mostly wore scarves, which were much cooler than the wig I had. This time, it is colder and I have lost all of my hair; well, I shaved off the last few tufts that were clinging on. I am a bit braver and am enjoying trying all the different options, wigs, scarves and beanie hats!

I dug out my favourite scarf from last time and wore it like this:



Then today, I wore my long, dark wig, with a gorgeous red hat that the incredibly kind @JudeHanlon knitted for me!


This is me with my daughter Betty, (she has hair so long, she can easily sit on it). We were at an event at Pollyanna in Barnsley, where the wonderful Rita Britton made sure I had my make-up done as a treat.

It is the little things like this that help such a lot. Chemo is tough, I cannot lie, but taking little bits of pleasure and enjoying the positives that come along are important steps along the way.

PS. I promise to add a picture of my red graduated-bob wig soon!


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The Rest

Rest is important at the best of times but while having chemo, it is vital to listen to your body and allow it proper time to heal. This is definitely not giving up. This is being sensible.

Now, with me being someone for whom "sensible" has always been difficult in such situations, this raises challenges! Last cycle of chemo, I was determined to return to "normal" (bear with me, there will be quite a few quotation marks on my blog!) as quickly as possible. This was a great aim but not really sensible and I suffered for it.

This week I have taken it much slower and have definitely felt better for it. The main thing is I have listened to my body. No one will think badly of me for saying I need to rest and the fact I know this to be true is an incredible tribute to my friends, family, work colleagues and the boss.

This is what makes the treatment easier to bear, less stressful and allows it to be something that fills as small a space in my life as possible. For that I am incredibly grateful and thank you all.


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A Pre-Chemo Letter

This blog is completely out of chronological order. It is a letter I wrote to get the feelings I had about being diagnosed with cancer again AND to deal with the initial, very obvious pessimism of my Oncologist.

So many of you are saying such lovely things to me. I appreciate every single comment. I am positive, I am hopeful and I have faith in the support, love, prayer and help you are all giving me. I have down times, times when I am absolutely terrified, I wrote this letter during one of those times. It was a way of me getting those fears out.

I wasn't going to post it, but Tim said it's important that if I'm going to blog, I blog all sides of this journey.

---

Written on Wednesday 6th October 2011

My lovely babies, Harry, Betty and Freddy,

Tomorrow it all begins properly. For real. And I am so scared.

I am scared that chemo won't do it. What if Dr Lee is right and I am just trying to fool myself into believing I can beat this, when in reality, it has already beaten me and I just refuse to admit it? This is a reality I do not even want to contemplate. I am so frightened.

I MUST BEAT THIS. I MUST.

My beautiful babies. This is so unfair on you. You shouldn't have to deal with this.

Little Freddy, my beautiful baby man, so amazingly little and cute and full of love and hope. How can I ever let you down in such an awful and destructive way?

Betty, my gorgeous, clever, amazing daughter. I need to be here for you. I need to be here to hold your hand and dry your tears when your heart is broken. I don't want to be the one who breaks it by leaving you too soon.

And Harry, such a wonderful, clever, thoughtful boy. I know that even though you are growing, you still need cuddles from your Mum and I want to be here to keep that promise of you never being too big for a cuddle. I promised you I would always be here for you, to love you, no matter what. I can't break that promise. I just can't.

You are three amazing children and I love you so very, very much. The pain of losing my Mom is as real now as it was more than nine years ago. How can I inflict that torture on my babies? You are my whole world. Everything. I have failed in not being able to protect you from the horror of this. So unfair.

The world is so wrong for things like this to happen. After such a horrible year, when I had started with such hope for the future, everything has come crashing down. It is just so horrible. So so horrible.

There is literally NOTHING I can do now. Just hope that the radiotherapy and chemo do everything I need them to do. Dying is just not an option and I pray and hope with absolutely everything I am and all that I have, that I can fight this and win. I don't want to die but I am so scared.

I can only promise, absolutely, my darlings that I will do everything I can to beat this, for you.

Mom


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Hair I Go...

Yes, I'm talking hair again. Or lack of hair. Over the past few days it has been falling out thick and fast until today, there were just tufts left.

My amazing husband Tim helped me to remove the last few tufts and then massaged in some lovely oil that my dear friend @IsobelBowler sent to me. Perfect timing, it arrived on the day of the big fall-out.

I can honestly say, as someone who has always been complimented on my hair, especially as for most of my life it has been long, that losing it is just awful. I know all of the positives, I know it will grow back, but waking up every morning to hair on my pillow and throughout the day, moulting like a Persian Cat in Summer, is no fun at all.

On the other hand, I calculate that I shall save around £200 over the next few months, with no hair cuts, colouring and products! So that will go towards a treat when my treatment is finished!

The children are being incredibly brave and supportive. Harry keeps holding my hand and Betty tells me every day that it doesn't matter if my hair falls out, I will still be beautiful! Bless her! Then just to keep my feet on the ground, this evening little Freddy said "Night night Baldy!" when he went to bed. To which I replied "Nighty night Gappy!" as he has recently lost two front teeth.

They are why I fight, Tim is who helps me to have the courage to fight and to endure anything that this brings.



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Hairmageddon

Today turned out to be THE day. Hairmageddon as my husband Tim named it.

The day when I stepped into the shower and my hair fell out a handful at a time. I had to keep unblocking the plug, there was so much of it.

When looking back at the last time this happened, the first time I had cancer, I always said it was the most traumatic part of the journey.  This time though, I knew it was coming and thought it would be easier.  Last time, I was very lucky to not lose it all and hoped that would be the case this time too.  It isn't though, it is already much worse than it got at the end of my treatment last time.

At my lowest, most self-absorbed points I keep remembering that photograph of Jade Goody, when she had lost all of her hair.  That is the last memory her children have of her.  I'm not giving up or anything but the thought of that terrifies me. 

On the plus side, I have a fab wig and today Tim took me to Meadowhall to buy a couple of hats.  I also have my scarves from last time and quite enjoyed creating designs to wear, decorating them with lovely pins and weaving bits of material here and there to make them look pretty, so I can look forward to doing that again!

Despite the tears and upset, I have to think positively.  Losing my hair is a sign that the chemo is getting around my system and that's a good thing.  At the end of the day, I will put up with anything, if it means I can stick around!

I still have songs to sing, dances to dance, hugs to give, children to love, (and embarrass) and hold.  There is so much to do!  I have a picture in my head of Tim and me, still holding hands when we are old - and in that picture, I'm NOT the bald one... 

That is what I want to make sure of, so bring on whatever this treatment has got.  I'll take it all, it's a trade-off and one that is absolutely worth it.

First Chemo and the Fall

So, it has been two-weeks since my first chemo session. I have definitely benefited from it being second time around; knowing what drugs helped last time, meant I could request them from the start this time, and take them as preventative treatment, rather than waiting for the side effects and taking them in response.

This meant a HUGE win on this cycle with regard to sickness and nausea. I had none at all! Now I'm not expecting that to be the care with every cycle, as chemo does build up in your system as you progress through treatment, but I'll take it for now! I did get a sore mouth and was very achey, which made sleeping difficult but I know it could have been so much worse.

At the weekend, I asked my husband Tim, to use the clippers on my hair and cut it really short. Last time, I remember clearly, that day in the shower, when my hair came out a handful at a time and I want to avoid that this time. Losing my hair, when I had always worn it long, was probably the most traumatic part, so I am being more prepared this time around.

Today, it has really started to fall out, I can't help it though, every time it's a grey one, I am less upset about that particular hair dropping! On my head there's no such thing as ebony and ivory living together in perfect harmony... The dye will be back as soon as my hair is!

With the fall beginning, it was appropriate that I had my wig appointment this afternoon. Tim suggested a red colour and I'm glad I took his advice because I love my new wig.

I have also decided that I am going to try out the complementary therapies and home treatments and report back on whether they help or not.

Watch this space!



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Normality

I usually begin writing without a title in mind.  Then I puzzle for hours about what I should call the piece I have just written.  Trying to be clever, witty, snappy and fun.  When sometimes the simplest titles work best.

Today, that is definitely the case.  I had chemo on Thursday.  Thanks to the miracles of anti-emetics (the strongest I could get), I had no sickness or nausea.  Definite #WIN  I feel a bit spaced out and weird but that is only to be expected.  I spent much of the weekend and today laid on the sofa, enjoying the things that usually go on in my house at that time... kids squabbling, complaining about their chores and arguing over what will go on the TV. 

Some people might find the thought of me enjoying that strange.  But it isn't.  That is NORMALITY and for me right now, the most important thing I could hope for.

I don't want my children worrying about me, about whether I am going to beat this cancer, or trying to tiptoe around me and be quiet.  I don't want them to feel like they cannot be kids.  Because in all of this, that is such an important thing.  I do not want cancer to rob them of their childhood.

Children should not have these worries.  Tim and I have been honest with them, whilst protecting them from the worst of it.  While ever they are just being themselves, that helps me stay strong and that helps us all.

These Hands

Yesterday was my first chemo. It started ok, with a lovely piece of chocolate cake! Then there were needles, yuk! As I sat there, with the canula in the back of my hand and the drugs that I pray are going to help me to kick this once and for all dripping into my vein, Tim sat next to me.  He has been beside me every step of the way and I am so thankful for that. (Last time and this time!)

Many of the staff that were there last time, are still in the chemo suite and the familiarity helped.  Most of all though, having Tim to hold my hand, made it all so much more bearable.

He took this picture and posted it on Twitter, with the caption "It's all I can do." But it is everything to me. It is so frightening to go through this, I cannot imagine what it would be like to try to do it without Tim. 

A friend of his on Facebook, pointed him in the direction of this verse, often used during wedding ceremonies.  She said the picture made her think of it.  I couldn't agree more and wanted to share it with you.

These are the Hands

These are the hands that will passionately love you and cherish you through the years, for a lifetime of happiness.

These are the hands that will countless times wipe the tears from your eyes: tears of sorrow and tears of joy.

These are the hands that will comfort you in illness, and hold you when fear or grief fill you.

These are the hands that will give you support and celebrate with you in your accomplishments.

These are the hands that will hold you tight as you struggle through difficult times.

They are the hands that will comfort you when you are sick or console you when you are grieving.

These are the hands that will passionately love you and cherish you through the years, for a lifetime of happiness. 

And they do.

In the Beginning...

I blog already but I felt it was important to have a blog that provides a space for me to say all of the things I cannot say on my other blog. Somewhere I can share my fears, hopes, failures and victories. No matter how big or small.

You see, I have cancer. At the moment I am not sure whether I am curable or not. I hope, but as this is the second time I have had this horrible disease, I know my oncologist is not optimistic. I lurch from being incredibly positive, to being terrified and not daring to plan beyond the next few weeks.

I have three absolutely wonderful, bright, amazing children and the thought that I may leave them prematurely fills me with the worst dread and fear.

I worry that I will not protect them from the worst of this, that I will fail in the main duty I have as a parent; to be here for my children.