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...
A story about navigating - and stumbling across - the rocky terrain and unknown world of triple negative breast cancer… in my forties, with two young children in tow.
Wednesday, 25 September 2013
Mad Pete
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....
Wednesday, 18 September 2013
Dear Tilly - Birthday letter


Tuesday, 17 September 2013
The best news ever.....
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....
- 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
Thursday, 12 September 2013
Onwards - 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
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......
Monday, 2 September 2013
Bittersweet
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
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!!
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!
The mind of a small child
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
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.
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!