Walking for CF

Amazing what you can do, when you come together ❤️ 

Myself and a group of AMAZING friends and family are walking 2000km over January with me, to raise much needed funds for the Cystic Fibrosis Trust. Due to the pandemic, charitable giving has almost completely dried up, and yet charities need the support more than ever, and we NEED a cure for CF. 

To read more, and sponsor us, please click here. Walking team - thank you all so much! 

My total so far:  254km

Group total so far: 1675km

How far we are off our £5,000 target: £250

Update on Isaac: Yesterday we completed a two-week course of IV antibiotics at home, and I de-accessed his portacath last night... Needle free life is good people! Symptomatically, he is doing really well. Lung function results? Not quite so great, but we can still hope for an improvement from the treatment over the coming days. Regular readers will know, we much prefer doing treatments at home than be admitted to the ward; more so now than ever, but .... it’s still exhausting, for us both. Today we celebrate with extra sleep, and for him, a long hot shower. 

Isaac complains.... hardly at all. The odd groan and eye roll, of course. I mean, he definitely has his moments in other ways (...ask him to come off his PS4 before he has finished a game, and you get an ear full...) but how he just gets on with things like IVs, that are imposed on him, on top of his already aggressive daily treatment regime? Especially when he knows he may not feel any immediate relief; will need blood tests every three days; putting up with your old Mum in your bedroom, early hours and every evening, poking and pumping you full of drugs while you doze; the endless beeping of the syringe driver.....? He never ceases to amaze me. Our wonderful boy. Big shout out to Dan and our gorgeous girls too, Anouk and Rosa ❤️ Home-schooling, working full-time, home IVs, keeping the home in a semi-fit state, fitting in the walks.... this is very much a team effort. They have been wonderful, they really have x x 

Mieke and Daan, adding their KMs in Rotterdam! 

From Vanessa in NZ. One big global hug! 

1,600km and counting...

Amazing what you can do, when you come together ❤️ 

Myself and a group of lovely friends and family are walking 1000km over January to raise much needed funds for the Cystic Fibrosis Trust. More than ever, charities need donations, and we need a cure for CF. To read more, and sponsor us, please click here. 

My total so far:  235km

Group total so far: 1635km - NEW TARGET 2,000km BY THE END OF THE MONTH!!! 

How far we are off our £5,000 target: £270

Trekking through snow and ice; so much better than mud! 

Camila x 

Little Evie and Isla! 

1,400 kilometres

Amazing what you can do, when you come together ❤️ 

Myself and a group of lovely friends and family are walking 1000km over January to raise much needed funds for the Cystic Fibrosis Trust. More than ever, charities need donations, and we need a cure for CF. To read more, and sponsor us, please click here. 

My total so far:  232km

Group total so far: 1472m

How far we are off our £5,000 target: £335

Walk from the lovely Jess.

Snowy walk today, with my sister Joby. 

Jo and Erika, mud wrestling. 

And just because he’s perfect. Obie. Photo by Rosa. 

I’ll post personal and group totals at the end of the month. 

Health update: Isaac is doing really well, ten days into home IV antibiotics. We’re exhausted, but hopeful x 

One thousand splendid suns

Myself and a group of lovely friends and family are walking 1000km over January to raise much needed funds for the Cystic Fibrosis Trust. More than ever, charities need donations, and we need a cure for CF. To read more, and sponsor us, please click here. 

My total so far:  176km

Group total so far: 712km

How far we are off our £5,000 target: £405

Not jealous at all, I need to walk this with you one day Vanessa! 

Steph and Louis

Sarah and I kicking some serious mud butt! X 

IV update and 1000km pictures

Quick health update: Isaac had his port successfully accessed Thursday, and so home IVs are now underway. Bloods indicate this is a bacterial exacerbation (his usual unwanted lodger, PseudomonasA) rather than fungal. Therefore plans for nebulised or IV anti fungals can go back on hold, which is a relief at this time, as either would necessitate time in hospital. Right now, he is coughing more, but this is typical of the start of IVs, clearing out the infected mucous. Otherwise, it’s going well. We have reasoned, there are worse times to having home IVs than in lockdown! 

Myself and a group of truly amazing friends and family are walking 1000km over January to raise much needed funds for the Cystic Fibrosis Trust. More than ever, charities need donations, and we need a cure for CF. To read more, and sponsor us, please click here. 

Pictures all the way from NZ (the lovely Vanessa) to the UK (the lovely Kay) and my foggy, flooded 10km today.

Keep well. Take care x x x 

River, flood or fog? 

IVs & Failed access

Hospital today. Isaac is stable, but no better after almost two weeks of extra antibiotics and anti-fungals. Side effects of the latter mean his poor lips are cracked again (and I don’t mean dry, chapped lips, but big old welts that bleed). The plan was for bloods, lung function tests, and then kick off IV antibiotics while we wait for the blood results (if the fungas is rampant again, they may consider nebulised and or IV anti fungals as well).  But, best laid plans and all that... after three failed attempts to access his port, we have come home, many hours later, with no venous access. Bloody annoying seems an apt phrase. Although frustrated, and in a little pain (the third attempt, they thought they were in, but the flush tissued under his skin, rather than going straight into his blood stream) Isaac was his usual stoic and wonderful self. Despite everything, we laughed on the way home, reminiscing on other medical fails in his history, and how much better things are now, than then (for one, although the port hasn’t helped today, this is the first time we’ve not been able to access it, and yet pre-port days, we had many a failed cannula, PICC or long line issue - funny how we can now laugh about these things, at the time I think we were all traumatised). The hospital was eerily quiet, being closed to visitors and all but emergency outpatient appointments. The wards are anything but quiet, and staff look exhausted. Weirdly, while there, we heard and felt a sonic boom as some fighter jets were scrambled to meet an incoming plane that was had lost comms. I think I am starting to be unshockable this year, amid the politics, pandemic and weird weather. Anyway, for now we’ll complete the extra meds he’s on, and will return on Thursday when his usual CF specialist nurse (and all time wonderful human being, C) is back in, hoping she may have better luck, knowing him and his port well. Portacaths can last anything up to ten years, but as he was 11 when he had this, five years ago now, he’s grown and how this child sized port sits in his chest now might be causing issues (as I understand it). It would be frustrating but understandable if this port were coming to the end of its little life. For now, we’ll keep our fingers crossed that this is a hiccup, not a port issue. It’s been a long day, and not an easy one for Isaac, but I reminded him that this has been the longest stretch between courses of IVs in a couple of years, or more. He smiled, said ‘oh yeah’, and just got on with it. It only cost me two M&S curries and a packet of yum yums. 

Today was not a walking day for me, but the group effort and sponsorship is growing. Thank you all so much x 

#Stay home, protect the fucking NHS, please. 

I’m not allowed to picture him much now, so have some ickle Ise instead ❤️ 

(PS. Before you report me, I don’t really give him beer)

Group 1000km

We are walking 1000km over January to raise much needed funds for the Cystic Fibrosis Trust. More than ever, charities need donations, and we need a cure for CF. To read more, and sponsor us, please click here. We will post updates throughout the month x 

Group total: 278km. 

Personal total: 111km. 

Day 9. 

17km walk (to St Ives) in the freezing fog. Bumping into some friends and family on the way was lush. I’m getting my mojo back... things are going to get better! Spent A LOT of time daydreaming about going to gigs again, and throwing a big summer party (when we can). Walking song of the day was either the also luscious Aldous Harding (love it here) or the more dramatic Perfume Genius (listen here) which my lovely Lemon introduced me to. 

Day 10.

I am over 100km!!! Lovely walk in the sunshine today, listening to a book. I’m just loving this now. Drove a short way to the next village to find a more remote walk, where I hardly saw another soul - but reading the papers later, I fear this is probably not within the lockdown rules. Bit vague, that ‘local’ bit. The lakes in my own village have become a bit of a tourist attraction, meaning a short drive to a quieter area is safer, but I get how hard it must be to define and enforce rules, and like many, I’m frustrated walking past groups of people ignoring the rules. From now on, I’ll walk to the next village. 

My pictures for today don’t come from my own walk though... they come from the wonderful Vanessa, in NZ! Love you ❤️ 

500? Pah! Why not 1000!!!

I posted a couple of days ago to say that I had to postpone my 500km walking challenge. 

To say I had a heavy heart doing this is an understatement. This is not a boast at all, but in the last 15 years I have walked Ben Nevis, the Yorkshire 3 peaks (stopping to breastfeed a baby Anouk en route!), trekked (I can’t even remember how far) over the Brecon Beacons, practically crawled 50km in a day in the Surrey Hills, threw myself out of a plane, walked for miles in fancy dress locally (twice), shaved off all my hair, got married, organised a big family fun day... all in aid of the CF Trust. Never once have I failed or given up. 

But lockdown really makes this impossible (working, home schooling, lockdown rules). After struggling with this, knowing either way I let people down (people who have sponsored me already, or my kids) I decided to postpone to March (hopefully post lockdown?). 

But..... enter super friends and family! 

I still plan to cover 300km over the month, in the now limited time that I have, but some pretty amazing people, as far away as NZ and Mexico, will now be walking with me. To make this still a challenge worthy of your support, we plan to cover 1000km by January 31st. If you would like to join us, please let me know. Maybe we can smash this record! I feel like I have just been wrapped up in a huge, global, loving hug. Can’t thank everyone enough, for the donations, the support, and the messages x 

We are walking 1000km over January to raise much needed funds for the Cystic Fibrosis Trust. More than ever, charities need donations, and we need a cure for CF. To read more, and sponsor us, please click here. We will post updates throughout the month x 

Julian Stanczak

Conferring blue, 1979

STOP PRESS

The challenge in January may be back on track!!! Although with a different angle... 

I’ve told you before how I have THE best family and friends, right? Well, they have gone and done it again. The lovely Claire White put forward the idea of a different walking challenge, with a higher target over January, but with many people putting in the miles, to add up to one big grand total. Details TBC, so watch this space! This has cheered me up no end. From the U.K, New Zealand, and all the way to Mexico, people want to help. To say I’m touched is an understatement. 

❤️❤️❤️

Day 4 and pause 😞

Day four: 

Blisters plastered and feeling better, but with a new pain in my heel and a general weariness, I decided to have a lighter day, so took two separate walks, totalling 11km. My first day of not beating my daily count. Hobbled back to watch Boris at 8pm (Rosa (age 8) said, following the announcement, that this was the first good thing BoJo has ever done, ha). 

And, pause: 

With a heavy heart, and despite some defiant ‘no, I can still do this!’ punch the air moments, I am going to have to pause this challenge, due to this new lockdown. 

On one hand, I figured, we are allowed to exercise... so can walking for 3-4 hours a day count as essential exercise? Yes? No? 

And by local, would that mean I could only walk in circles around my own village? Or could I walk from village to village as I normally do? 

I mean, I hardly see anyone, and can easily do it alone or with just one other, and can socially distance quite safely from anything (cows, sheep, people, newts....). 

But when they say ‘You must stay home’, then, can I not? Should I not? 

Is this essential? Yes, we need to raise funds for a cure. But right now? No. 

After a night of back and forth (I can be stubborn as hell when I’ve put my mind to something) the turning point was the thought of home schooling and entertaining all three kids for the next seven or so weeks. They deserve the best of me. They have been amazing throughout all of this. 

Full time work, home schooling on my own, lockdown rules, needing to cheer up the kids, and the huge amount of time this challenge takes just make this, sadly, not doable right now. 

But I will walk again! Fear not. This challenge WILL start again post lockdown, most likely for the month of March now. Which gives me a little time time to train, and hopes for sunnier skies. Thank you so much for all the sponsor and support so far. I will update you again soon! x x x 

Jürgen Heckel (1970)

500 /days 2 and 3

I am walking 500km over January to raise much needed funds for the Cystic Fibrosis Trust. More than ever, charities need donations, and we need a cure for CF. To read more, and sponsor us, please click here. 

Day two. 

My legs feel like spaghetti on strings, with big boots at the end. It feels like they only move because of the pendulum effect of the last stride. Two shorter walks today, one faster one on my own, the sun now shining. Finished my audio book ‘The secret we kept’ by Lara Prescott, really good. A second with my girls, Rosa riding her new bike beside me. Obie helped pull me home. So tired tonight, I just opened the stove with my hand. At least the burn will help distract from my poor and aching feet. Can I really do this? Tomorrow I walk with my friend Sarah, which will be lovely. 

Long walk, short walk, and a day 2 total. 

Day three. 

Sarah, the poet in my heart! You saved me today. One long, muddy walk (the mud really slows us down). But really beautiful. Talking so much to my lovely friend, I didn’t feel any pain. On coming home, despite a hot bath and dinner, I couldn’t stop shivering. The cold is in my bones. The kids pile on me for cuddles, finally getting me warm again. Four new blisters, shit - how do you fix feet when you can’t take a break? Tomorrow, I’ll take a few shorter walks instead. This is tough! 

Anouk and Rosa are regularly beating their own 500 targets each day, doing star jumps and sit-ups ❤️ Keep well everyone x 

The 500k commenced!

I am walking 500km over January (and some wonderful friends and family will be pledging their own active challenges in the theme of 500 to support my fundraising further) to raise much needed funds for the Cystic Fibrosis Trust. More than ever, charities need your donations, and we need a cure for CF. To read more, and sponsor us, please click here. 

First day of walking today, and it drizzled or rained the whole time. The route was not a pretty one, but avoided floods and mud, so I could at least cover more ground. Not a bad start. Loving my new boots, keeping my feet dry, while everything else felt soggy. I must admit, while I probably walk 5-10k most days anyway, stepping it up to 15-20k a day is quite a jump, and to average that a day.... I may have kinda, a little, just slightly, underestimated what a challenge this would be, ha! Nevermind, I will succeed. And hopefully if the rains stop, I’ll be able to enjoy more beautiful routes, and anyway, the music saves me. Today’s rambling song of the day was the wonderful Four Horsemen, by Aphrodite’s Child (listen to here.)

I’ll be posting updates so you can see my running total every few days. Thank you so much for all the support so far. 

Health update; Isaac started a third antibiotic and anti-fungals concurrently a couple of days ago, hoping to kick some serious CF bug butt. He’s not yet feeling any better, but the hope is we can delay IV treatment a little longer with this plan. X

Today’s long walk. And no, I didn’t give up at the end, but needed a lift back as it was getting dark and I ran out of footpaths 😂

Today’s total.