It's a wrap!

Off to the last radiotherapy today...... then sayonara C world..... hello to Christmas! 

And relax......

My lovely cousin Becca sent me this tune a while back and I thought I'd share......reminds me of my Pink Floyd days.

In her words 'Highly recommend listening to this http://www.youtube.com/watch?v=LuQrLsTUcN0 with a cup of tea'.

Enjoy xx

Radiotherapy

Unbelievably, I'm one week three days into radiotherapy treatment and so far, so good. To be honest, anything would have been better than the last few months. I'm still feeling pretty battered physically, with achy body, fatigue and various other ailments, but I can't tell you what a relief it is to feel 'well' (so far) on this part of the journey. Drs and friends have told me this would be a walk in the park compared to chemotherapy (last time I'm writing THAT word!) so long may it last.

Basically, I trundle off to Cheltenham each day for my appointment at the oncology centre - mostly around 11am - do my thing and trundle home - occasionally sneaking in shops or lunch! Luckily I've had lots of lovely people for company - friends, Mum and Wayne and I have driven myself a few times too.  Either way it isn't too far and it’s an easy drive. On the first day, there was a slight hiccup - a waiting time of 3 hours (sigh), second day it was an hour and a half wait but, since then, I've been pretty much on time give or take 10 minutes. Once I'm through to the treatment room things actually move pretty fast: Strip from the waist up (so brrrr in this weather!), onto the bed and then the positioning – it’s this that takes the most time. 2-3 nurses (with freezing hands!) adjusting you to line up tiny ink tattoos on my body (which were done during a planning session 2 weeks ago) with the machine. Next the radiotherapy, which takes literally a few minutes and is painless. Then speedily dress to warm up, ha.

If anyone is interested in reading more, here is a link from the Macmillan website.

http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Radiotherapy/Externalradiotherapy/Externalbeam.aspx

Side effects so far.......well, I'm pretty exhausted but trying to rest in the afternoons - in between swimming lessons, rainbows, school Christmas fairs and plays! My skin where they blast  is starting to get a little red and itchy - they explain it will feel like sunburn. Otherwise, as I said, I'm doing A-ok and have perked up lots over the last week - not nearly so tearful and generally feeling more myself. Slowly, slowly but long may that last too!

So, this is basically my life until 18th December......let’s hope it all continues to go smoothly.

Someone is tugging on the heart strings!

By Tilly Rose Clarke

The road to recovery....

Well, as mentioned, it's been another tough few weeks since the last dose of chemotherapy. And, of course, it wouldn't be right if a member of the family didn't get ill (as they have done for the last few treatments)... This time it was Tilly, who decided to come down with croup a few days after treatment. So, into isolation again for me – which has actually been one of the toughest things because, as a Mother, you naturally want to be with your child when they are ill.  Anyhow, thankfully I was spared that virus - phew!

Unfortunately, this last dose fell on half term - grrrreat. It just makes it harder with two children at home. And hard it was. Me in bed, two kids and a frustrated husband trying to cope with a poorly, demanding 6-year old and a spritely baby. Not the most ideal environment for recovery. Joy of joys!

Whilst my sister was down, it was the calm before the storm and then… as expected, it knocked me sideways. Boohoo! Aching bones to the point where it hurt to even lie my head on the pillow - pain all through the jaw, cheeks and head. Horrendous nightmares coupled with night sweats and generally poor, fitful sleep for days. Pain all over the body, including teeth, eyeballs, spine - crippling at times and uncomfortable to even lie in bed. Not to mention the emotional tornado sweeping through me - irritable, tearful, angry and generally all over the place! This time round it literally took me to the brink of despair...  I wondered if I'd ever feel normal again!

Now three weeks on, I still feel pretty battered and bruised. The stuffing has been well and truly knocked out of me - physically, mentally, emotionally (yet again I'm not in control of the tears!) and spiritually. My body basically feels like it’s been run over by a juggernaut. Muscles are still hurting at the slightest movement and I’m unable to climb stairs without becoming breathless. However, we plod on and I only have to look around at other peoples situations and feel thankful I'm still here, on the road to recovery.

One of the hardest things to cope with now is the realisation of what I've actually been through – it’s hit me hard since finishing this treatment.  Mainly, I think, because they sweep you up at diagnosis time and you are then on this fast treadmill of appointment after appointment and it all feels so surreal. Now I've had time to stand still, breathe and soak up what has happened... and it feels very real, shocking and scary - thinking about actually having C and the future. And, of course, anxiety about the next step - radiotherapy. Back to fear of the unknown. Plus, I'm ready for my hair to come back now! I'm so fed up with having none and catching sight of myself in the mirror!

I also have an added worry about being symptomatic for the menopause. Well, hot flushes and mood swings, which could also be the chemotherapy - but the doctors have informed me that, due to my age, I'm bang on the line (50/50) as to whether my body will kick start into it. Jeeeez! I guess worse things could happen but please, body, if you're listening, maybe not just quite yet. I'm really not digging the night sweats that much!

Then, would you believe it (quite clearly luck is not on our side at the moment!), I spent the afternoon in A&E on Sunday with little Lilabelle after five days of fevers = a sleep pattern like a newborn = broken parents......again!! Thankfully, it’s all resolving itself now after we detected a urine infection. So, she be on the mend - Hoorah!

Naively, at the time of diagnosis you just think: ‘ok, big deal, I've been diagnosed so I'll just have the treatment and I'll be fine.’ I honestly had no idea what was in store. Chemotherapy (with two young children) has caused so much havoc in our lives – it’s made the simplest things stressful and has turned me into a completely different person, stripped of patience and day to day coping abilities. Not to mention the pressure on our marriage - arguments, misunderstandings and irrational behaviours. All because we have been so sleep deprived and blinded by the enormity of the C world. Humph! I have realised that people will never truly understand what the journey is like unless they have lived it themselves. How could they? (especially when people ask how I am, most of the time I reply 'doing ok' so as not to bore them with a list of ailments again). For that reason, I now know why, when I told my friend who has been through a similar journey about my diagnosis, she burst into tears and said: 'I just don't want anyone I know to have to go through this experience.’

So now, as I thankfully turn my back on the chemotherapy chapter of my life, I came across this quote. I have seen it several times and it has never really touched me but this time it has real meaning in my life. I feel like I'm falling apart... and it’s now time for me to focus on the rebuilding... step by step, brick by brick... which feels like it could be a long process, especially emotionally and physically. But, hey... I've got the time. Time to put plans in place, decide how to shape the future and think about what, if any, changes I want to make. Time to find my spirit again, my path in life and a balance between mother and wife whilst giving myself time to heal from this awful experience. First though, it’s on to the radiotherapy chapter, which I'm praying is nowhere near as ghastly as the trials and tribulations of chemotherapy.

Breaking the silence - Friday 15th November

Well, it’s been 3 weeks and 1 day since the last dose of chemotherapy. Normally, I would have gone in yesterday for the drugs.......but not this time. It feels so good to know that my body now has a chance of ridding itself of the toxins rather than constantly topping them up. It’s not been an easy 3 weeks but that's for the next post.

For now, I just wanted you all to know I haven't given up on the blog – it’s just been hard to do anything that is linked with the C - in fact, I haven't even been able to click on the blog icon without feeling nauseous. That coupled with the constant fatigue (its hard to find the energy to write) and lack of time. However, it gives me strength writing about my journey so here's to many more post's......

The next stage.......

So, the deed is done. I have successfully made it through the twists and turns of chemotherapy treatment....well, I’m in recovery at least. What a journey. I can safely say I never, ever want to be in this situation again. It's been a hard, traumatic, emotional time for us all but, thankfully, my family is in one piece, my husband has avoided a breakdown (so far!) and I'm alive to tell my story! 

Weirdly, it's not without mixed emotions though. There's been constant highs and lows since my diagnosis but the end of chemotherapy brings the biggest high yet. However, it seems as soon as the last dose is in sight everyone wants to speak to you about the future. Yep, THE FUTURE. The future of living with cancer. How to move forward. The chemotherapy nurse, the breast cancer care nurse, the oncologist, the radiologist and so it goes on. They've all had their say over the last couple of weeks which naturally provokes anxieties, tap tapping on my mind, pestering my peace and quiet and dampening the sense of happiness I had at the end of the chemo. It brings with it sadness as I wonder what the future has in store for me. I just want to live a normal life and pray I am able to do this by controlling the inevitable anxieties and finding the courage. Mmmmm, somehow, I need to find this balance to be able to move forward.

Meanwhile though, the PICC line has been removed. Hooray! I can now have a shower without driving Wayne mad, asking him to wrap my arm in clingfilm. The skin can feel fresh air again and I can have a bath. After all the worries about getting it inserted though, I am super glad I did. It has been a good friend, easing the pain of the toxic drugs. 

Then, before I know it I'm onto the next stage of this mountain climb.....it's at this point we part hands with chemotherapy and I allow radiotherapy to take over the lead role. With that in mind, I met with the radiologist consultant last week and it's looking like 4.5 weeks of radiotherapy for me. My dreams of getting it done before Christmas could be slowly vanishing as, yet again, I hear the words......'because of your age and type of cancer, we want to give you the maximum dose'. The story of my journey! So, they are going to give me 3ish weeks grace and then start treatment at the end of November, Monday to Friday – every weekday. Bah! They assure me it's going to be an easier ride then chemotherapy so here's hoping that’s the case! It's just the logistics that are tougher. A daily trip to Cheltenham for 15 mins of treatment. Oh well, I guess I could squeeze in a little Christmas shopping at the same time, right? 

Let's hope the next couple of weeks bring a smooth ride and I recover from this last dose without any traumas! So far, so good. My lovely sister, Emma, has been down all weekend to care for Lila. Wayne was given an exit ticket and has had fun out with friends (in fact he's still out!!) and Tilly is off with Granny doing.......Granny things of course! It's half term so I'm hoping to get stronger as the days go by to take part in fun Halloween and fireworks adventures but, meanwhile, I'm tucked up in bed, planning on hiding from the storm I can hear brewing outside my window! Ttfn xxxx

Thank you Aunty Em for looking after me xx

Número 6. Final dose. Just sayin!

A song full of memories for a dear old friend Stephen, who would have been celebrating his birthday today. 

And a lovely tune to help put a spring in my step for last dose of chemotherapy...... ever! 

Enjoy xx

http://youtu.be/n6j4TGqVl5g

Hospital admission..... Sigh

It was all a little too good to be true and perhaps inevitable with a sick husband and Lila at home again. This time, my germ dodging didn't go to plan! I was up and running a few days earlier after this dose and coping well and then WHAM.....  admitted to hospital Sunday night with a fever. They have a protocol: any fever and, within an hour, they have you in hospital hooked up to IV antibiotics. Xrays, ECG, the works. No messing! They even sent an ambulance as I couldn't get hold of Wayne and the kiddies. First time for everything! 

So, Saturday I was out with friends... Sunday I was on an acute medical ward from hell surrounded by three senile ladies. ARGH! Thankfully (was that close to discharging myself), I was moved on Monday to the Oncology ward with private rooms. Although the damage has been done... I’m mentally scarred from the experience and the greedy 60 mins of sleep that first night. I think the lady who shouted out every hour 'Robert, Robert, is that you?' (thinking she could see her son) tipped me over the edge, emotionally and mentally! Too sad. 

Hey ho, although I'm utterly fed up, I keep thinking how things could be worse. And they are not! So, let's hope that I’m home today... back to my own bed and family, with a week to build myself up for the last dose next Thursday. 

Courageous friend Natalie.

I'd just like to share something with you all.
This is a video of an old friend, Natalie. We had our first babies together (she now has three gorgeous boys), celebrated their first birthdays together and hung out in sunny Devon together as new Mums. We then moved to the Middle East but stayed in touch. Right now, Natalie is also fighting cancer - she is about to have her right lung removed because of this cruel and unforgiving disease. She is such a fighter, truly larger than life - as you can see - and this video has made me smile on a tough day today. She is with the black headband, and husband Phill is dancing in the kitchen. Enjoy. 
Hugs to you Natalie. Xx

http://vimeo.com/76033768

http://www.dailymail.co.uk/health/article-2449241/You-NEVER-ignore-mouth-ulcer-wont-heal-Natalie-did-just-weeks--faces-tragic-consequences.html

Cha-Cha on my friends.....

Gearing up for the penultimate dose (thurs), my thoughts are somewhat anxious (knowing what’s in store this time) coupled with anger and a sickening feeling deep down in my stomach at having to do this awful treatment regime. I've had a lot of 'why me' days again of late but, luckily, they've been mixed with some really lovely, distracting times with family and friends to soften the blow for what’s in store tomorrow and beyond. We've had some fun dinners out, glorious walks and well needed catch ups. The kiddies are on good form too but, as a result of all the above, I'm a little exhausted (again!) – but, it’s a positive tiredness if that makes sense and it will carry me through the next few days to help banish the terrors and keep feisty strong ready for this dose. 

The only blip is that I've had a pic line infection – boooooo.  So, antibiotics for me but, after the initial dismay, I'm now taking the attitude that if this is the only blip I have then I'll take it and go with it!

I'd just like to take this chance again to say a heartfelt thank you to friends and family for their continued support, shoulders to cry on, phone calls, logistical help and, most importantly, the steady stream of culinary delights we have been treated to. It all means so much, is unbelievably helpful and gratefully received. 

So, with positive thoughts and a sprinkling of fairy dust, it’s on to the next leg of this mountain climb.........this time with the summit in sight! Hurrah! 

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...

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

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.

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!

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

           

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! 

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.