Wednesday 25 September 2013

Mad Pete

Honestly, I cannot tell you how surreal my life has become over this last couple of days. I’ve gone from being so ill on Friday and seriously doubting if I was going to make Tilly’s birthday party on Sunday… to getting up and about on Saturday, washed, dressed and pottering around - still needing to rest but, most importantly, out of bed for a good portion of the day… to the village hall on Sunday for a joint party for Tilly and the lovely Sophie and 28 of their friends, hosted by the one and only Mad Pete – children’s entertainer and generally bonkers. The children LOVED him! But guess who he had to pick on… oh yes... Tilly’s Mummy – just recovering from a week of hideous chemo side effects and wearing Wilma out in public. Bloody typical! So, before I knew it, he had me up in front of the children, spinning four plates with my hands and one on a party hat. You had to see it to believe it!

Ta-da


Well, all I can say is that everyone feeling poorly should have a good dose of Mad Pete for entertainment - truly a tonic!

So, besides this, the party was a HUGE success and Mummy made it… Hooray!  One very, very happy 6-year old. And I am SO happy to be up and running again and feeling a little more full of life. The side effects still prevail but I’m trying hard to not let them get me down and focus now on the recuperation before the 5th GD dose next week. Here’s to some of the nice things in life, a few treats and some time with friends over the coming days...






Thursday 19 September 2013

Serious side effects....

Back on the roller coaster again……..It's day 6 In the BB house! Honestly, it feels a bit like it…. A prisoner in my own home!  Well F Hell, they weren't wrong with this one. I know they say ‘no pain no gain’ right? But this has taken things to a whole new level. And there was me being fairly confident on Sunday, feeling not so bad, thinking that just maybe I’d got away with it! HOW BLOODY WRONG was I? Doxetaxel we need to talk!! You're hurting ma bones, you’re cramping my style, but mostly you’re an unbelievable fierce piece of work that’s seriously knocked me down and left me to wither!

I’ve thought hard about how to explain this one but all I can think of is as they warned me……worse flu symptoms – aches and pains that would send a man to hospital! Coupled with shooting, electric pulses firing through my joints and bones, each one taking my breath away. Ankles, knees, hips, fingers, you name it. And today it hit my back with a vengeance. Crippled with pain this morning I gave in and rang the Dr’s, trying to hold it together on the phone, begging for something stronger than paracetamol and ibuprofen which is clearly NOT helping. Coupled with this my stomach has reacted again, making me feel equally loathsome, so back on the toast and manuka honey for me. 

I’m well aware this drug is one of their major MF weapons against bc, so they tell me, but its killing me..... literally. The liquid fire is ravishing my body, leaving no stone upturned and taking no prisoners! Honestly it makes the previous 3 doses feel like a breeze. It's hard to breath, my heart feels week, circulation up the creek, night sweats, actually day sweats too, even my nail beds and eyeballs hurt! My body's being crushed and I'm seriously struggling to bounce back from this one. Amongst all this I'm trying to hang onto the fact that it must be positive, the drugs working its magic and will make me better. Its bloody hard though, especially now when it's 11.52 pm, I want to be asleep but instead I'm writhing around trying to get comfy, and writing away to try and distract from the agony. Sigh!

Tears and frustration come and go and I’ve resorted to chocolate, having just eaten a whole family big bag of Minstrels curtersy of Jo - yikes! Followed by half a bottle of Gaviscon….Bah! Sadly it doesn't look like I’ll be exercising any time soon either.... much to my huge disappointment. Even a gentle walk was tough on Monday, more like a stumble and a trip! Having all started on Monday I've now had 3 full days of agony, 3 days in bed, 3 movies, and more than 3 meltdowns! Please please let this be over soon, onto pastures new – surely by tomorrow improvement?  As I’ve said many a time, I haven't time for this! It's miserable, and I'm the world’s worst patient at the best of times! So, dear side effects......please do one, be gone with you..... very soon. I've got school runs to do, people's to see and places to be RIGHT NOW Grrrrr. 

Despite everything though, this has really made me thoughtful about the people out there who do this alone, the elderly, the vulnerable, and children. Honestly, I couldn't do it without my co-pilot and the sound of Tilly and Lilas chatter/laughter (ok and tantrums!) in the background. I’m so very grateful for my family right now.

On a slightly happier note – I gave my husband a good giggle tonight wearing the most ridiculous nightcap to bed – so glad someone can laugh at my expense through all this turmoil!

And b-r-e-a-t-h-e.........

Meanwhile, I’m off on a nostalgic, virtual flight around the world for some happiness, memories and escapism……along with some strong pain killers to try and ease into a restful sleep….bringing a better day tomorrow. 

1st stop....Tonga - a special place where we spent lots of time during our childhood. Such infectious, warm, friendly people.


NZ - another place dear to my heart. Having grown up with family and friends this side of the world, trips were frequent and extended. Oh, the excitement when we drove over Auckland harbour bridge, climbed my favourite place - One Tree Hill - or admired the views of a real volcano - Rangitoto. 


Victoria Falls, Zimbabwe - the most awesomely beautiful place in the world. We visited as a family and the memories have stuck forevermore. 


The Caribbean - a favourite of my Father's, we were lucky enough to visit many a time: St Lucia (below), Antigua and, not forgetting, Jamaica for my 21st.


Morzine - I left home at 18 to set out on a huge ski season adventure here. Another beautiful place with fond, if not crazy, memories.


And final stop on tonight's journey - NYC - I moved here at 22 and can honestly say had THE most amazing time. Such a vibrant, inspiring, exciting place. Love love love! 


Night night y'all xxx



Wednesday 18 September 2013

Dear Tilly - Birthday letter

Dear Tilly,

Every day, Daddy and I marvel at how much you have grown. And it constantly amazes me how quickly you outgrow your clothes! ‘I can’t believe it’s another growth spurt’, I frequently mutter.

6 years ago, we could not believe our luck - a beautiful baby girl, refusing to turn in Mummy’s tummy so born by caesarean section at 10.07am on 10th September 2007 in Exeter, Devon. What an absolute delight. What an absolute life changing experience! I’m sure, if I remember rightly, that I stayed under the duvet for weeks from a mixture of pure shock, delight and fear! 

And now, I look at you, with your beautiful curls (which you are still convinced occur from eating your crusts!), your boundless energy, smiles and love of all things outdoors and fun. My, how your little life has flown by. Every day you surprise us with new things you have learnt, new talents you have acquired and new words that enter your vocabulary… all in just 6 years. 

Your little life has been full of adventures from the beginning, giving us a scare at 3 months with whooping cough - what a fright but what a fight you put up. Then, off to Qatar at the age of 18 months. What a life experience for you - you learnt to swim at 2 years old and kept the Arabs entertained with regular displays of bottom shuffling! Nippy bottom shuffling at that. I don’t think they’d seen anything like it when we put you down in the malls and you scuttled off at the speed of lightening! Then, at 3 years old, back to your Mummy’s and Daddy’s home county of Wiltshire, setting up home in the village of Oaksey ready for the start of your new school last year. And now, you are a big Class 1 girl – I just can’t quite believe it. Fortunately, you’re surrounded by beautiful countryside, adorable friends and family and a Mummy and Daddy that love you dearly. We couldn’t be happier for you and I pray every day that these tough days of late do not tarnish your childhood memories. 

As always, we countdown to your birthday with you…..‘how many sleeps Mummy, how many sleeps?’ The excitement for you is immense and, at times, overwhelming. On the eve of your birthday, we kiss goodbye to being 5 years old together and talk about waking up……and being 6 years old. That night, Mummy & Daddy stay up late wrapping, decorating and cooking and come and check on you for the last time as a 5 year old. You stir a little as we hang balloons over your bed. A warm kiss and stroke on the head and back to sleep. 

The next day, YOUR birthday, you bound out of bed…..choose your birthday breakfast of chocolate croissants, play with the balloons and we manage a few presents before school. A watch, a pillow pet and, of course, some Moshi Monsters. Not forgetting a birthday lunch box and fairy cakes for all of your class. 

Finally, a birthday tea after school with Granny and your friends Eleanor, Eliza and Eddy. You love your cake, presents and all the excitement, but collapse into bed that night happily exhausted. Though not forgetting to ask……‘how many sleeps until my party, Mummy, how many sleeps?’ And so the countdown begins again……..

Whilst growing up, you have always loved Winnie the Pooh, carrying around your enormous, cuddly Pooh Bear since the age of 2 and then snuggling up with it to watch the film – the first one you sat still for. 

A.A. Milne's 'Now We Are Six’ is one of my favourite books from my childhood and I hope you will love this poem too…… 
                                                        
                                                            

When I was One,
I had just begun.
When I was Two,
I was nearly new.
When I was Three
I was hardly me.
When I was Four,
I was not much more.
When I was Five, I was just alive.
But now I am Six, I'm as clever as clever,
So I think I'll be six now for ever and ever.





































Tuesday 17 September 2013

Shine on.......


Keep your face to the sunshine and you cannot see the shadow. Its what Sunflowers do.
Helen Keller




The best news ever.....

You may well remember that I took a trip to London to the genetics team back in the summer, for testing for the BRCA 1&2 gene..........Well, I received THE phone call yesterday and I am ecstatic to report that I am NOT carrying the gene. So, so over the moon - for myself, my dear little daughters and my wonderful family, near and far. No more stress and anxiety about having to pass on glum news and, for now, no more horrific thoughts about making complicated decisions regarding preventative surgeries. What a huge relief. I could dance!

In fact I will.....which sparked a debate in the house as to 'what is the happiest song ever?' a tricky one I know......any thoughts?

I managed to narrow it down to 5 or 6 and this is one of the ones that I always turn up loud on the radio and start jumping around like a loon......so join me with happiness and dance your socks off!

http://www.youtube.com/watch?v=bjPqsDU0j2I

P.s Don't think I'm going to let you get away without any ABBA or  Mr Diamond before this blog is out.....

The end is nigh....

Its official, I can now say it.........2 more to go!!

Day 2 and all doing ok today, despite no sleep and muscle ache all night. Welcome new drug, welcome new side effects. At least the steroids are only 3 days this time - so lets hope Mr insomnia doesn't loiter around too much this cycle.

Yesterday was do-able, despite turning up at wrong time. Gawd! Not sure who's fault that was although suspect Miss chemo brain here didn't read the letter probably....ooops! We got there promptly at 9.30 am only to be told my appointment was at 2 pm. Yikes. And dear Polly had school pick up to do too. So, a few phone calls, emergency plans made and job done, two girls on the loose for the day. So what are we to do?? Mmmmm, Shopping of course! Mooching, browsing, bacon sandwiches, hot chocs and a spot of funny hamster research (not for me I hasten to add!), ker-ching! Such a fun distraction we almost forgot to go back to hospital!

But alas, back to reality and treatment finally got under way later that day, nervous about a reaction (2 out of 10 people react to this new medication) but pleased to report all went well, much quicker than last cycle of drugs and no typical colour loss transforming me to a white sheet with sickness, groggy feeling, so big relief all round. Eventually home by 5ish and into bed for sneaky cosy time, until......before I know it, I appeared to have two little munchkins crawling into bed with me ha ha! 

And so, my new to-do list for today and the next few days is, (especially focusing on the last item):

- Count my blessings
- Practice kindness
- Let go of what I can't control
- Listen to my heart
- Be productive but calm (Wayne would LOVE me to practice this one!)
- Just breath.....

Actually, I'd be pretty happy if I could just breath myself through the next few days so the rest is a working progress for now......

Meanwhile, I plan to be be found in bed over next couple of days, if I can force myself to rest.... Please knock quietly - that is, until the kiddies find me and start oozing excitement and bouncing on the bed!

Friday 13 September 2013

On a cold wet day.......

Remembering the lovely heat we had not so long ago......


                  Another visit from the dear Darren.....
              
          

          

                  Veggie tastic.

          

          


          
            
                  The biggest sunflower ever! 

          
              
                  The lovely Malmesbury Abbey Gardens.

          

          

         

                  Quick nap in the background zzzzz

           


















Thursday 12 September 2013

Onwards - treatment no 4.


                              

Against all odds: with Lila and Wayne being struck down with the lurgy and various friends with colds, I've been desperately trying to avoid germs without actually putting myself in isolation! Feeling battered and bruised (emotionally and physically - only have to tap myself at the moment and seem to mark, thanks to low blood count and a bouncing 6 yr old!), tired (the tiredness is extreme now, accumulated through the weeks and finding it very hard to get through the day without 40 winks) and cold (yep, the thermostat has gone up the creek since the weather changed!), we make it to treatment no 4. 

 

I’m fairly anxious about this new drug today. Having met with the consultant on Monday, who told me the fatigue will worsen and flu like symptoms are common, I'm trying to stay positive and confident - hence the above quote: ....... It made me smile, despite not feeling that brave. I'm trying.....hard.

 

Logistics are a little different today – sadly it’s the first time in without Wayne, who is staying behind with the kiddies. My escort today is the lovely Polly and we have projects to work on, gossip to goss and general girlie time to enjoy. A great distraction if ever there was one! 

 

This cycle I've had to start the Steroids again - 24 hours earlier due to the new drug. But the good news is I think I only take them for 3 days as opposed to 7. Phew!

 

Meanwhile, since taking first dose yesterday, my brain has awoken instantly (they’re amazing drugs - can kinda see why people take them!) and come out of hibernation, like a crocus pushing through the snow or the sun bursting through dense fog. It seemed to have taken a holiday for the last couple of weeks - a sleepy, sluggish, scatty, majorly disengaged holiday. Now we are back to busy, overworking, creative, thoughtful brain which, annoyingly of course = insomnia again. Double edged sword, I guess. Sigh. 

 

Last night, I finally dozed off at about midnight, only to wake at the joyful hour of 5.30. PING, brain kicks in but eyes feel literally like a thin line of superglue has been run along the lashes. And 'noooo' I feel my body cry. Looks like I will have to rely on the morning dose of steroids to jump start my engine! 

 

So, welcome back effervescent brain.  You've been missed during this last couple of weeks. May I suggest we get busy with it, tackle the pile of to do's which ground to a halt after your last visit, do a few jobs and manage a few coherent conversations without constantly saying 'oh sorry, I was about to say something but I've just forgotten!' Ha! .... But, please, I'd be so grateful if you could remember to stop your cogs at night-time and let me sleep a little. You know, snoozy snooze, z's, dream dreamer, visit slumberland.......... at appropriate times, of course. Is that asking too much? Merci beaucoup, mon amie.

 

What’s more, it sounds like this new drug today will kiss goodbye to any remaining hair on my body. Sob! Oh, how I’ll miss my eyebrows - which I've finally, at the age of 41, painstakingly shaped to a style I’m happy with, that suits me… They’re soon to be gone – and my lashes too. Time to order in the eyebrow/lash kit methinks. Although, I have no clue how to actually draw/stick them on without looking like I'm in drag!  Another learning journey I could do without, although I will try to find the funny side.... Eeek! 

 

So, off I go, further up the side of this mountain. Bring it on – I can't wait to say ‘2 more to go’!!!  Wish me luck..... See you on the other side, dear friends xxx


C whisper: Treatment day is treat day! It's so unpredictable how long you'll be in hospital each time, averaging from 5-7 hrs for us, so supplies are essential! Arm yourself with a good bag of sweets, favourite foods or comfort foods. Plus a good mag. I'm serioulsy showing my age today as turned up with Gardener's World and Good Food! That is untill Polly (in uproar!) bought Grazia and Hello! Check.... up to date with the world of goss.......Gardening and food have to wait their turn! 

Wednesday 4 September 2013

Treatment trauma

Meanwhile, perhaps inevitably, I hit the deck - literally! According to Drs, a treatment reaction plus sheer exhaustion. My body has simply stopped working and conked out = bed for three days. Boo hoo!

It was just all a bit too good to be true. We’d made it to the outdoor theatre last Monday, which felt like such an indulgent treat on a beautiful summer evening. Plus, I managed a bike ride on day 5 this time, bringing it forward a day each treatment - albeit almost giving myself a respiratory arrest at the top of a hill with Lila on the back and having to reach for emergency water in her beaker (that she had kindly regurgitated bits of food in for me – yum). But it all felt like such an achievement… Jane Tomlinson I am not, but I could be cycling to hospital by the last dose, ha ha. And then, wham… out of nowhere, a severe stomach reaction to the medication. So it’s been another tough few days, another hurdle on the mountain and another fucker on this journey!

I guess I’ve had a real taster of feeling like a Cancer patient! ‘You are’ I hear you shout but, actually, I don’t want to be and have done quite a good job at kidding myself so far. But these last few days, I’ve felt bad, poorly, sad and ill - especially in the mornings. I’m feeling old, like the treatment is taking its toll, like it’s making its mark, its imprint. Bald, pale and with PICC line in the arm is not a good look and can start a normal day off quite emotionally – let alone when you’re feeling ill!  Quite frankly, I want this ALL OVER WITH RIGHT NOW and a big fat slice of normality to come crashing into our lives please! So, I gave in to a few days of cosy bed, PJs, snoozes, films and reading. Silver lining? Not really – I’m rubbish at being ill! Oh, the irony!

The days passed and I hit another ultimate C low point… More tears as I wasn't well enough to accompany Wayne and Tilly on our planned ‘Tilly Mummy Daddy’ outing to the carnival. Too sad. It was meant to be our end of holiday special time together without her sister competing for attention. HUMPH! I cry as I wave them off together, Tilly asking why I’m not coming – but, thankfully, easily distracted by the excitement. Suddenly, halfway feels like nowhere land. Three more treatments feels unachievable right now and brings with it new anxieties. How will I cope with the new medications? How will I cope if the insomnia is worse? If the side effects are worse? I know my worries are always heightened when feeling ill but I can’t help it… I’m a natural born worrier.

I can totally relate to this Poem right now......


Thankfully though, I'm pleased to report I'm past the worst, back up and running, just, and embracing being Mummy to two while Wayne away.

Monday 2 September 2013

Bittersweet

So, the end of the Summer holidays looms and Miss Tilly Clarke starts back at the village school very soon – Tuesday, to be precise. And boy is she ready to return after the last week of attitude and chat-back, testing our sanity levels to the max!  Yep, she’s definitely ready to return to her buddies and the excitement of class one. But are we? Are we ready to get into the morning routine again? The battle for eating breakfast, brushing teeth, hair, getting dressed, all against the clock to turn up presentably before you get the ‘look’ from the headmistress on the door. Mmmm, judging by the fact that Tilly awoke at 9am today and we had breakfast at 11am, I’m guessing that (logistically) that’s a no. However, emotionally and for mental health reasons, all I can say is: yes, yes, yes! And it’s only been a 5½ week holiday this year and I’m not totally sure I’m ready to lose my little girl back to the routine and dictatorship of school… but, equally, this has indisputably been the Hardest (yes with a capital H!), most challenging summer holidays we would care to experience as a family. We are officially broken, on the edge, shattered, damaged and almost ready for the white jackets! So, let’s throw in the towel and quit while we’re just about ahead methinks! Let the Autumn term begin!

Don’t get me wrong, there’s been some fun times scattered into the hard times too. We've made it through three treatments, had a holiday and given it our best shot trying to maintain familiarity for the girls as much as possible but right now I’m feeling that C has taken a lot away from our family. Whilst physically and emotionally crumbling at the strain the treatment has put on our day to day functioning as parents, I feel we have been robbed of the laughter and happiness that usually resonates around our lives and had it replaced with stress!. To start with, despite being eternally grateful to Wayne for being my co-pilot at home (I truly don’t know how I’d have coped without), it’s actually very tough being under each other’s feet each day. Some days we get into the groove and have ‘our roles’ and others it just goes to pot - usually when I’m not feeling too good or being particularly cranky! Plus, my confidence as a mother has been battered, generating more guilt than ever that I’m not able to give the children what they need right now. I’m constantly more agitated and defensive – a by-product, I guess, of the treatment and sleep deprivation - and feel I’m unreasonable to live with most of the time! It hurts on the bad days, knowing that I’m not coping with the children, having to turn on the TV that little extra for sanity, losing my patience and shouting. As a mother, this is not how you wish to be! I’m sure I am being hard on myself but it’s hard not to. It’s hard not to feel like you’re failing - especially when Tilly can pull on my heart strings so easily!

My dear Tilly, it’s surely not been easy for her either, having to cope with her Mummy not quite being on par, seeing the tears, sensing the anxieties and being thrown into life with a baby sister who wants EVERYTHING that she has and more! She now notices every call I have to take, the conversations, every email I have to write and texts that I send. She notices time that is not spent on her. On the one hand, she is so aware and, on the other, blissfully ignorant (I pray) to the troubled minds of her parents. Despite her trying mood at the moment (and who knows if this is connected with our situation or just 'normal' 5 yr old stuff), I’m so proud of her on every level, so proud of her for being her and facing the daily changes and challenges in our lives, keeping us on our toes – let’s face it, I’d only be feeling sorry for myself if she didn’t give me a reason to be busy each day! I just hope that this entire journey becomes a distant memory to her and to us all very soon.

We've also made if through what seems like the endless run of summer birthdays, trying desperately to celebrate as normal – which, I must say, is a strain in itself with chemo brain at its worst! Despite dreading mine this year, my birthday was a huge distraction, which brought back some of the happiness, smiles and love into the dark days, helping enormously. So, really, it’s hooray for birthdays - we’ll keep them coming for now!! Especially as we accelerate towards the big one, the princess of all parties, the final summer birthday…….Tilly’s 6th……The thought alone is exhausting! May I just add two words here……PARTY ENTERTAINER!

And so, whilst some therapy is almost a given for both of us, lol, some emergency attention is needed to a broken husband who is barely hanging on right now. It’s been hard on him, the father that gave up work to be a house husband for a week, our lives then turned spectacularly upside down by this god damn, unforgiving disease. He never really got a taste of being a house husband, did he? And right now he needs to be repaired, rejuvenated, away from the worries of his sick wife, demanding children and money/work stresses that plague him daily and keep him awake at night.  And so, he’s off next week for some sanity, some quality buddy time, a spot of surfing and coastal walking before a return to work for him is nigh. Bon voyage dear husband - wish me luck being a solo mummy to two. It’s been a while.

By the way, to this day, Wayne still jokes about the lengths I went to to have the summer holidays off with the girls… So, I guess my positive side is screaming about the silver lining of having this irretrievable time with them this summer (albeit car crash at times). However, I will continue to dream the dream about ‘life after cancer’ and how summer 2014 will bring back the happiness and laughter we so rightly deserve.

Post 3rd dose, post Birthday - Sunday 25th August

As I’ve mentioned in the previous post, a big thank you to Granny again for holding the reins on Dose 3 day and thereafter. All went well. I was a bit knocked out on return from hospital but the next day no sickness again - BIG hooray - and I'm coping with the other side effects well. Trying to embrace the dreaded steroids again, on the second night (which seems to be when they kick in) I got 2 hours sleep, 3 hours awake and then snoozed for another couple of hours. Last night was similar but I was up today at 5.30, cleaned downstairs and did lots of blog catching up! I even hammered a picture nail into the wall at 6.30… sorry, neighbours! Quite hilarious really! It’s a bit of a pain but I seem to be at my most productive for the day! So, apologies if you receive FB messages/texts at random hours but strike while the brain's hot, right?? Or while the brain is actually working! Needless to say, I start to lose it slightly as the day goes on but, hey, that’s why my cosy bed is up there to catch me when I fall! In fact today was a classic, I stood in the shower, about to turn it on, fully clothed! Yep, officially bonkers. And according to Wayne, I can now add amnesia to my list of ailments. Triffic!

We managed a wonderful Birthday, thanks to Wayne and the generosity of so many friends. Delicious, scrummy fry up and company in the afternoon and I lasted until 9pm and then crashed. No bubbles this year but I'm looking forward to plans of celebrations/parties when this is all behind us. Ideas welcome!!



Day two of celebrations today at Granny's house with Sis Emma et al and Bro Rupert. I cannot wait to see Tilly again. She’s been massively entertained by Granny, looking after the neighbour’s chickens and having to go and put them to bed each night, wake them up in the morning and collect eggs. What an adventure! Made even more so by Granny's traumas with misbehaving Bantams…giggle! Not sure she will be investing in her own any time soon!

We managed a quick walk into the woods today before leaving - not a huge amount going on, just oodles of blackberries waiting to burst, beautiful ferns and lots of surrounding hay bailed fields. It feels like I am definitely up and running faster after each dose – and long may it last too!

My favourite oak tree in Oaksey.




So, now I’ve done the first 3 doses (sorry for repeating this SO many times!!) the chemotherapy changes to a new one for the next 3 doses - TAXOTERE. I'm a little apprehensive, to say the least, and have heard mixed reports about the side effects but I'm hoping I can carry on with the same amount of normality I’m experiencing at the moment. Please, please, please! Yes, yes, yes!

The mind of a small child

Just a little update of the kiddies coping mechanisms through all of this chaos!

Wilma the wig made her introduction to Tilly and it went down well. She was highly amused as I put the wig on and we played a trick on Daddy to see if he noticed Mummy’s new hair. He did…immediately - boooo! Mainly because my hair has never looked so neat – unless, of course, it's the day I step out of the hairdresser's (for about 45 minutes till the wind/rain gets hold of it!) So, yes, no need to straighten, style or do anything really - a neat, perfected look in an instant!

We talked about embarking on the loss of Mummy's hair with Tilly. We simply told her something along the lines of: ‘Mummy will be receiving some medicine to make her all better and, can you believe it, that medicine will make Mummy's hair fall out. How funny is that? But, don’t worry, it will all grow back etc.’ She then launched into a fab conversation about how chefs have to wear hairnets to stop their hair falling out and they also wear blue plasters and baggy checked trousers. Got to love the way their minds work. And that was that, onto the next conversation and not fazed in the slightest.

When my head was shaved, Tilly saw it the next day. She was again quite amused - and who wouldn’t be! She wanted to have a good feel and said: ‘You look different, Mummy. You don’t look like you.’ She played with the scarves again and helps me choose a different one each day. She’s handled her friends amazingly well and sometimes asks if they can see some of my head: ‘Look at Mummy’s hair now.’ In fact, in Devon, she rushed over with Edward and Megan and a couple more friends in excitement for them to take a look. Then, when Wilma comes out, it creates a little confusion for some of the kiddies but Tilly just announces: ‘Don’t worry, that’s just Mummy's wig!’

At times, when I wear nothing on my head around the house, she comes over for another feel or cuddle or comes out with another random comment about how funny I look now. But, generally, she seems to be taking it all in her stride and is totally unfazed by it all. I’m just a little apprehensive about what she may decide to tell her friends/teachers at school about Mummies hair/lack of it and wig! Let's face it, we have no control over what they decide to talk about with friends/teachers and the stories they concoct are often quite a hoot so watch this space for ground-swallow-me up moments in the playground!

As for dear little Lila, she could actually be the embarrassing one. She looks at me with constant confusion and tugs playfully at Wilma when on. Oh dear…eeek! She looks at each headscarf with puzzlement, especially as I’ve sometimes changed it while she’s been napping - a women’s prerogative right? Well, after all, I have to get the outfit right which often takes a few attempts, ha! So, she’ll not miss an opportunity to take a tug at the scarves too if I’m lucky, especially if I bend down anywhere near her!

Tilly has also been fascinated by the PICC line, asking many questions and wanting to know how it all works. She thinks it highly amusing that I have to wrap it in clingfilm to have a shower. What we try to do over chemo days is arrange for a couple of exciting sleepover nights for her and, having just returned from Granny's, this seems to work well and gives us a little respite to get back on our feet. Plus, Tilly has huge adventures and does more than she would at home with a tired, insomniac Mother! I’m hoping she doesn’t regard it as being sent away - it doesn’t appear this way from her response as she is such a confident little character.

So, who knows what the right way of coping with all of this is. I know there are no rights or wrongs when dealing with children wrapped up in their parents' C world but we have taken the approach of 'less is more' and let her come back to us with the questions. So far, it seems to be working for us - there were a few wobbles in the beginning during operation and we get the occasional 'I want my old mummy back!' Although not totally convinced this is due to the situation, a bit of clever emotional blackmail and heart string tugging perhaps? Needless to say it works! But nothing that some quality mummy time, toe painting, creams and beauty talk doesn't solve!!! See..... 5 going on 15! Beats moshi monster obsession for 5 mins though!

So, did I say this already?…….ONLY 3 MORE DOSES TO GO! Then we’ll move onto the logistics of the radiotherapy but I'm not going to think about that yet! Not enough brain space, ha ha!

PICC line insertion

PICC (Peripherally Inserted Central Catheters) line insertion - Tuesday 20th August.

Mmmm, I still haven't really made up my mind but think this is the right thing to do - with a little encouragement from darling Stella, my District Nurse friend! It's got to be really as the veins in my hand are sore and bruised from the previous doses of chemotherapy and the ones in my arms are looking a little gnarly too. A PICC line should prevent further damage – it's a narrow catheter inserted into the vein in the upper arm, using ultrasound. The tip of the line will lie in the big vein just above my heart. Mmmm, it’s a wonder I was ever a nurse as this part makes me squeamish each time I think about it. No chance of going back on the wards for me! However, the pros are that all future bloods will be taken from it (and, believe me, there are a lot of blood tests going on!), so no more stabbings and all Chemo will be given through it. As for the cons... mmmm, I'm not really going to go into those as it's the usual scary stuff!

So, off I go, escorted by Sarah and God-daughter Emily (18 years old and fascinated by the whole procedure!). After my initial sob – yep, rubbish I know - I decide to go ahead and get it done and haven’t looked back yet, except when I had to return the next day due to a puffy hand. Thankfully, it hasn't developed into anything but will be monitored. Once given the local anesthetic, the procedure got going and took all of about 40 minutes. Next came a chest xray to make sure it was in right place and hadn't gone up the neck… yikes! This resulted in the line needing to be pulled back 2cms as it was too far into the heart… yikes again! Then, job done, one PICC line inserted. Now it will just need to be flushed and re-dressed each week and it should look after itself hopefully. Another hurdle over.

Sunday 1 September 2013

Can I reach for the Gin? - Sat 17th August.

Continuing straight on from Devon, can I just tell you how bloody hard things are right now - a real crash back down to reality for us! An excitable teething 1-year old that screams and shouts constantly and has decided she doesn’t want to go to ANYONE else when Mummy is around, let alone be put down… A phase, I know, but exasperating at the best of times! And a 5-year old (almost 6) who’s decided she doesn’t want to listen to anyone at the moment and has developed the attitude of a teenager!! Please let this be another quick phase! Plus, we haven’t managed a conversation - or, at least, to finish one - in an age and we are constantly deranged from the day-to-day treadmill and stumbling of this GD C experience. I hope I’m not judged on this - to be fair, I think it must be a 'normal' experience we are having (summer holidays and all) and despite all this chaos, I thankfully still wake up every morning waiting to hug and kiss the little bunnies. Oh, the constant trials, emotions and guilt of motherhood, hey!

Thrown into the mix is insomnia again (GD I HATE Mr Insomnia!) - this time not steroid induced so why oh why???.....dark nights, tears and thoughts keeping me awake – the usual things….the future (a biggy!), money, work, Wayne returning to work, coping with the next dose and the impending appointment of a PICC line insertion (see next post). And this time Wayne too......we toss and turn together, both having nightmares, both troubled by insomnia. Me listening to the radio most of the night and then even more narky and short tempered in the day. I have resorted, reluctantly, to sleeping pills - but guess what.......they seem to laugh in the face of insomnia too! Grrreat! Oh, it's all so much fun at the moment. Never the less, we continue on for the children and do our best to navigate the pathway, helped out some days with supportive friends, Granny and the boost of a return visit from nomadic traveler, Vince (Wayne’s bestest buddy) after 6 months of adventures (thanks to his lovely chauffeur sister Anna – yep, 4th Anna!).

All of this gets me pondering again about stress levels and how vital it is to manage them to support recovery and maintain a healthy C-free future. Plus, sleep is said to be fundamental for recovery, body repair etc. My body and mind just wants to heal. Fat chance right now! Hard not to worry about it all really, especially with the children keeping us on our toes like this! Will keep taking my chai seeds and papayas and hope for the best methinks! – See C whisper below.

Meanwhile, consciously trying to manage the stress, days pass by, and I'm rapidly approaching my 3rd dose. I try and spend some mindful time doing gardening, endless weeding, enjoying the beautiful nature around, combine harvesters chugging in the next-door fields and tending to our poorly neglected vegetables…eeek! Quick Monty Don update: we are munching our way through the potatoes, delicious lettuces, have beetroot and carrots to harvest and, new to this year’s repertoire, some celery (I’m not sure how edible it's looking right now) and corn that’s looking like it could represent a meal pretty soon. Raspberries are coming on and rhubarb is resembling a triffid! And, might I add, having struggled with this lot over the last two years, Wayne is now talking about adding an allotment to our collection. WHEN would we ever find time for this?? It's a yes to chickens though - desperate for them!







Before we know it, the next Thursday D-day arrives. Confronting dose 3 is foremost... but, weirdly, this is the day that Wayne and I actually seem to manage conversations, catch ups, reacquainting ourselves and generally making important life decisions that we all have to make now and then! I can’t quite believe we have started to look forward to a day in hospital together - a break from the children and time to ourselves. What on earth has our life come to, I ask? It cannot be right. I guess, though, that it's a silver lining to what can become a grueling and anxious day.

C whisper: I just have to mention chai seeds - another nutritional super seed (South American), helping to boost our antioxidant levels, proteins, minerals and Omega 3 fatty acids. Recommended at the beginning of this journey by someone, I take it daily, mixed into porridge. Who knows… but something is keeping me going and I'm too scared to stop now, ha! Go try them - can’t do any harm, right? But be warned, if you mix them in wrong they tend to resemble frog spawn eugh!

Along with papayas to ease the digestive tract and cut through the metallic taste during chemotherapy – again, seems to work.

Manuka honey also for the digestive tract - lashings of it on toast, in drinks and on the spoon!

Oh, and lemons! Lemons in every drink to keep the taste buds under control. Works wonders, especially to put the fizz back into me with a bit of carbonated water.

http://www.organicauthority.com/health/superfoods-to-eat-during-chemo.html

Also, I highly recommend a good mouthwash, something to keep working to keep those ulcers at bay.

Plus, a good dusting of bronzing balls - for those peaky pale days they work a treat!