Fangirling my way to the neurosurgeon’s office.

Just over a fortnight ago I had an MRI scan - the results were amazingly positive. The tumour has shrunk! The chemo and radiotherapy have been doing their thing. So much so that we’ll be carrying on, past the September end date, through to Christmas, and then we’ll see.

At the Neurosurgery appointment last week my surgeon said I looked bright and well considering the chemo, and concluded that my rehabilitation to date has been “impressive”. With flushed cheeks I giggled like I’d bumped into Tom Hardy in the lift. The nice shiny apple worked a treat.

Savouring the praise, I regaled friends and family with details. I say take compliments where you can get them, but – what with the infrequent appointments and all – medical professionals are not a wholly reliable source. Better to seek opportunities far and wide because you might just need a hit in between.

Back home, I tried to get my left foot into these fabulous pony-skin, animal print sliders. But my brain couldn’t handle it (neither could my foot), and so, I was back to knowing my place. Having a word with myself, and all that.  



Since I’m keeping closer tabs on my spending, accessories offer the solace I need. Outfit making, at lower cost. Win-win!

I went a bit mad in Lovisa. They do their own version of the Insta-famous tassel earrings, plus more subtle versions (see above) if like me, you are bored of them. 

Sar x

 

No More Pret Debt.

I am being entirely sincere when I say that on finishing work before my surgery in December, I was more worried about being away from the office for up to 8 weeks, than the awake craniotomy itself.

I know. What sort of person was I? That person – the one sending not very important emails at midnight and checking my NHS-issue Blackberry every 10 seconds. I thought being off work would be terrible. I’d be bored at the very least, but above all, wouldn’t know about all those important things going on and you know, might even be forgotten!

When further treatment commenced and I focused on my rehabilitation it was suddenly the least of my worries. I discovered I can *actually* exist in the world sans work email. What a revelation! 

I held onto the notion that I might be able to work part-time during my treatment but it became clear my body had other ideas. The need to adjust the goal posts has become par for the course.

On starting chemo radiotherapy, I had visions of how I would use the time – maybe baking my own bread, fermenting vegetables (that’s a thing now) and getting on top of years of paperwork. It's with no remorse that I admit none of it has happened and it's safe to say it probably won't.

I’m lucky to be employed somewhere with a generous occupational sick pay scheme but like others at the early stage of their career have moved around quite a lot between private and public sectors. Therefore, in relation to continuous service my number of years didn’t cut the mustard for maximum entitlement. 

Irrespective of how good your workplace scheme is, eventually it will stop. Statutory sick pay (capped at 28 weeks in total) is £89.35 a week. 

I suppose the point I wanted to make here was that a long term illness will undoubtedly affect your finances eventually – the extent will depend entirely on your circumstances. There are benefits you can claim – complicated processes with very long forms.  Patience or support from somewhere like Maggies, Macmillan, or your Specialist Nurse might help.  

It’s easy with hindsight to advocate the importance of health cover and other such insurances, but in your twenties and early thirties (if you are child free) priorities are likely to be paying the bills, having some money to have a good time, and hitting up Zara once a month.

I’m slightly reformed, more frugal. No early morning Café Nero calls or £8.50 Pret stops. The drawers full of beauty products are getting used and the mutlitude of mini hotel freebies are not gathering more dust – shower roulette is happening and a surprise new scent every few days is quite a treat!

I'm out of my comfort zone (brain tumours are good for that) newly financially dependent on another, but fortunate enough not to need the spare room at my mums just yet.

There was only one thing to do on my last proper pay day. Forget being sensible and have one last big (online) shop up.

I went IN, savouring every click. 

Sar x


Let's talk about that haul.... 

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This jumper! The low back, stripes. Red detail giving it that little something! Sadly, no longer available as it was in the sale. I've linked something vaguely similar below. 

A pair of leather look trousers should be a capsule item. More 'put together' than jeans or black chinos and equally good with heels or trainers. The staple pair I've had for years from Zara have a busted zip (the month on steroids is to blame!) and I thought it was time to reinvest. This pair (River Island) have a higher waist which can hide infinite sins.  

My Insta husband has limited availability and so sometimes a vaguely green wall in a car park has to do. We're working on it. 


Jumper dresses can evoke feelings of drab work wear - function over form, but not this one. Flattering for all shapes, the ribbed grey, red and navy colour blocks mean it's winning on every front. 

Due to the cast (which helps by the way) trainers with a flexible sole are what serve me best. These statement orange/red babies were literally calling my name. I've got into my red stride now and two random in the street compliments make them almost value for money (pictured/linked below).

A colleague bought me the PUR scented candle pictured as a 'before surgery' gift. It has now taken pride of place in the bedroom (I had a candle backlog too!!). Handmade in Ramsbottom, it smells fresh and generally divine. 

Clutch pictured is old (Warehouse). Bonas (I'm going to call them from now on - you know what I mean) do great sunglasses and these cappuccino cat eye beauties were only 6 quid (pictured/linked below). 



Did you see the piece I wrote featured by the lovely ladies at Chapter W? Check it out here

All my best faces - sharing lessons in vlogging.

I popped my vlogging cherry in June. The Manchester Ted Talks Group asked me to record a 3-minute video based around one of my blog posts which would be shown at one of their monthly evening meetings.

I said yes, of course, because there was no reason to say no. I hadn’t done it before, but that wouldn’t matter.  Here’s what I learnt.

1.      It will take you much longer than you think – especially if it’s your first go. I didn’t start early (that would be too sensible) and thought I’d be able to bash the whole thing out in a day. That didn’t quite pan out….

2.      What about fancy equipment? A tripod would probably be useful. I didn’t have one so rigged up my digital camera on the combination of a ladder and stack of books. It did the job, and we all have to start somewhere, don't we?

3.      Make sure you pick the right spot - somewhere nice and quiet. I say this because one of my best takes had to be discarded due to *someone* singing loudly in the shower.

4.      It’s harder than you might think to say all those things in one take. You could spend time learning it like a script, but I had left it too late. Alternatively, you could keep recording take after take, until you get it right, but that requires a level of patience I lack.

5.      I opted to accept my limitations (and impending deadline) and record it in chunks instead - this brings with it its own challenges.

6.      If you were well versed and managed to get it in one, editing might not be required. If like me you gave up on this, then you are going to have to edit the thing.

7.      You’ll need software. iMovie might be good enough (but I don’t have a Mac *shakes head in shame*) so had to download a programme and (quickly) learn how to use it.

8.      On reviewing your footage you’ll quickly need to accept two things. The way you sound, and what you look like. You might like the face you do in the mirror but your face basically has a life of its own that you weren’t aware of. Move on.

9.      Remember the purpose of your vlog. Is it about getting a message across, or about showcasing your brand and amazing editing skills? The latter will require much more time, effort and practise.

10.  You might find watching other videos and vlogs inspiring. Someone super slick like DevanOnDeck might spur you on, or (in my case) remind you that rustic and relatable could be your niche.

Would I do it again? Well, you'll have to watch this space.


All the faces I didn't know I had (and a very important message).


Peachy.

It’s easy to get into the habit of always thinking about what’s next. We all do it – planning for holidays, new jobs, our lives all mapped out. Years in advance. I had some myself, but don’t much care for them now. We can be guilty of forgetting that the unexpected might happen – a sudden death, life changing illness, divorce. Those things happen to other people we think, reassuring ourselves, I’ll stick with my important plans.  

The line in the Baz Luhrmann song Everybody's Free (to Wear Sunscreen) “Your choices are half chance, so are everybody else's” sums it up for me - your success is never 100% down to your own virtue and (bar a few exceptions) you probably aren’t a genius – great! The pressures off.  

I haven’t spent much (any) time wondering why I got a brain tumour, and I don’t feel angry about it. I see it as the roll of the dice, getting the (unlucky) short straw. The stakes are high and it is inconvenient, for sure, but who knows? If it wasn’t this it might be something else – not necessarily now, but in the future.

I had a bad week last week, a tougher chemo round and a general feeling like I was trying to walk through treacle. Comments from my physiotherapist “that my walking looked really fatigued” before the session had even started induced tears - the first time she’d seen me be anything but practical and positive in the six months I’ve been seeing her. Tears at having to accept the impact my ongoing treatment has on me – making walking, and my whole rehabilitation much much harder. Tears at the realisation, that when she says it takes days for the brain to fully recover from seizures she’s right.

The next day I reported the seizures to the Neuro Oncology team. Two in two days, one lasting 45 minutes and then, suddenly, I had some options. I’d start a third anti-seizure med as an add-on, and would be getting a cast fitted to my ankle to help with general stability.

After a sit down dance to Get Lucky, I was feeling (almost) peachy again.  

The unexpected can be catastrophic, but being able to deal with it - the rough and the smooth is something to strive for. There’s no formula, and I can't claim to have it all nailed down but what a privilege it is to be able to shake off the shackles of all those plans you had and see the world differently.

I’m doing every cliché in the book - blogging, painting and dyeing my hair pink.

Flying the flag and wearing the t-shirt.

And why not?

Sar x


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Let's start with the Jeans. I'd had it with skinnies really as soon as I came out of hospital. On a practical level I couldn't get them on myself and needed a lot of help, and the fact that one leg was much thinner than the other wasn't making me overjoyed. I tried mom jeans but there was something not quite right about them either. Orson from Topshop are the perfect in-between. High waisted, part mom, but straight leg and not skinny. I particularly like the subtle frayed edge which is just enough.

My sister came round wearing the 'peachy' tee and I ordered it literally 10 minutes after she'd gone. It's a good fit for a casual tee and the perfect combo of stripes and lettering. Not a lot more needs to be said.

Earrings - Topshop (now out of stock). Radio (similar still available) - John Lewis. Rose gold dish (similar still available) - Oliver Bonas. Lip Balm - Glossier (mine is 'cherry' - a marzipan dream). Sunglasses - old.


My Brain Tumour - What Happened When?

Filling each section of the hard-core type dosette box (4 sections for each day of the week, with braille should you need it!!) has become a Sunday evening ritual. Populating each section is not only quite satisfying but also helpful in thinking about the week ahead. What’s on - day by day, section by section.

Brain surgery, chemotherapy and radiotherapy don’t make you a very reliable friend.

You read the messages but you forget to reply. Sometimes you don’t answer your phone. You might be napping or at physio.

There’s a lot of stuff. Stuff to remember, and do. There’s appointments, seizures, exercises, and amongst all of this, there's life too.  

Seasons 1 - 7 of Mad Men to re-watch, getting into The Good Wife (from the beginning of course). Rediscovering painting and the odd lunch with colleagues and family.

There’s building a substantial collection of walking sticks. Simply serving an important purpose isn’t good enough - you want your walking stick game to be strong!

Days when you just can’t get up. Difficult conversations, and tears.

So many people being there if you need.

You are grateful. But some friends have fallen through the cracks. They bump into other friends and ask questions. Surgery was when? I didn’t even know….and what, chemo? When was that?

Even if you follow my blog religiously you might be confused about exactly what happened, when.

I haven’t been posting chronologically - that would make far too much sense, and having started this in January (three months after my diagnosis) there really wasn’t any going back then.

So, on a Sunday evening - let’s start at the beginning and map it all out.  Section by section.

Sar x

(if you already know all the details you may want to skim)


Pre-diagnosis (Aug - Sept 2016)

21/08/2016 - first tonic-clonic seizure

Sept 2016 - see a neurologist, have first MRI scan

Diagnosis and planning for brain surgery (Oct - Dec 2016)

07/10/2016 - diagnosed with ‘presumed low-grade glioma’. Start taking anti-seizure drugs for symptomatic epilepsy

Oct 2016 - further MRI scans (perfusion, spectroscopy)

08/11/2016 - agree to undergo awake craniotomy with functional mapping for resection

08/12/2016 - finish work prior to surgery. Expect to be off for approx. 8 weeks

09/12/2016 - functional MRI scan (fMRI)

16/12/2016 - awake craniotomy (surgery eventually abandoned due to positive mapping throughout. Small biopsy obtained

Recovery - 3 weeks in hospital due to severe left side weakness

05/01/2017 - biopsy results & next steps: Grade II Diffuse Astrocytoma, IDH1 Negative, no evidence of 1P/19q codeletion (now considered inoperable)

06/01/2017 - discharged from hospital

Jan 2017 - fertility preservation (post to come soon about this)

Treatment phase one (Feb - March 2017)

06/02/2017 - concurrent chemoradiotherapy (42 days oral chemo/33 sessions of radiotherapy)

Treatment phase two (April - Sept 2017)

20/04/2017 - start cycle 1/6 of oral chemotherapy

16/05/2017 - MRI scan

17/05/2017 - scan results

18/05/2017 - start cycle 2/6 of oral chemotherapy


Sheet Masks and Hospital Beds.

Going into hospital plays havoc with established beauty regimes. I did have a ‘regime’ before I had brain surgery, it involved double cleansing most evenings, serums, facial oils. The lot. I optimistically took a travel sized take the day off cleansing balm into hospital along with a couple of flannels. When I had my own little room with nearby sink, and as soon as I was able to do an assisted weight transfer from bed to chair I could properly cleanse much to my delight. One evening, making myself at home, I followed the cleanse with a sheet mask. I sent the photo below to my friend on the evening of 23rd December 2016. As mad as a sheet mask in a hospital bed might sound, no one really batted an eye lid.

The nursing team had already been through all of the products I took in with me - concealer, red lipstick, blusher and eye brow pencil and I guess I did the sheet mask because I could and because it made me feel more like me. Akin to my mum painting my nails red the day after surgery (the right index fingernail left naked for heart rate monitoring!).   With no nearby sink or bathroom once on a shared ward though, I was soon back to face wipes. Sheet masks would have been a wasted effort.

Less brain tumour and more skincare this time....

 

 

Six Special Skincare Buys


I’ve talked before about my favourite red lipstick, and how lipstick of any colour (but particularly red), can lift your spirits. A friend recently mentioned she wanted to try red but wasn’t sure it would suit her, and I thought about what I could suggest as a cheaper offering. These Maybelline Superstay 24hr DualEnded Lip Colours are in my makeup bag at all times in ‘533 Steady Redy’ and ‘310 ForeverHeather’. Given they are so often on 3 for 2 or similar deals, they work out good value and whilst they might not stand up to the 24 hour staying power claimed, they do stay put reasonably well.

Thorough cleansing really is the backbone of removing makeup, dirt and dead skin cells. I won’t cover the science of skincare products here because I’m not an expert and others do that so much better than me. Good places to start are Caroline Hirons and Sali Hughes. They will hook you up with everything you need to know (be prepared for a maxed out credit card!!).

The L'Oreal Paris Extraordinary Oil Facial Cleansing Oil is lovely to use despite its less than catchy name. It has a beautiful scent and feels luxurious. Don’t be put off by the idea of cleansing oils – I’m on the oily spectrum and whilst it sounds counterintuitive, the use of oils won’t make your skin any oilier. Always on offer this is a great budget cleanser.

A basic but effective gel cleanser is also a good product to have in your skincare stash. This Superdrug own brand B. Melting Gel Cleanser is a favourite of mine. It’s very mild, pretty much scent free and therefore good for sensitives. If you are feeling flush however, then the Clarins pure melt cleansing gel is lovely. In my opinion it is no more effective than the Superdrug version for removing makeup, but it has a much nicer scent if that sort of thing matters to you. The whole B. range is worth exploring as a way of trying new things out at reasonable prices.  

Since starting the second phase of treatment I must admit that I’ve lost my general cleansing mojo and so a good micellar is my new bedside friend. There’s no doubt that cleansing properly with one (or both of the above) would do me more favours, but sometimes motivation levels are lacking on that front. This is a good all-round micellar and one that doesn’t sting the eyes like others I have tried.

Vitamin C is well talked about for its ability to reduce pigmentation and even out skin tone. The Ordinary range is relatively new and part of the DECIEM family. I have several products from the range on the go. I’ve been adding the Vitamin C Suspension 23% to my SPF each day and do feel my skin tone has evened out and brightened a bit.

On the anti-aging front (I am 30 now after all!!), retinoids are another well talked about and important ingredient in anti-aging products that work. Applied after cleansing and before moisturiser or facial oil, prices for retinoids vary and so if you are new to experimenting in skincare this range is a good place to start coming in two strengths (the minimal packaging is very bedside table Pinterest friendly!!). I’ve found the Advanced Retinoid 2% to be slightly runnier than other retinoid products I have tried but can’t fault it on any other front. In terms of effectiveness I think it works just as well as some of the bigger boys, but time will tell. As with all of these things its best not to expect miracles overnight.

All products linked above.

Sar x


No Growth.

There's a lot of counting down when you're having long term treatment. Life is sort of lived in chunks. It's all about getting through one chunk, ticking it off, and moving on.

The great thing about having a gathering as an antidote to pre MRI scan angst is that you might have so much fun that you forget to update on the actual scan news. Sorry about that.

I can't even claim to have been waiting a couple of weeks for results which whilst not at all uncommon simply isn't the case. My oncologist was looking at the scans on a computer by the time I had my cannula out. The official feedback was given at my scheduled appointment the following morning. But still, what a service!

The news was good. As good as it can get at this stage in treatment. There is certainty that the tumour hasn't grown at all, and we are all so pleased about that. Possibly some shrinkage too, but things were less clear on that front. If it had been acceptable for my consultant to whoop he would've done. Instead there was a pat on the shoulder and a shake of the hand.

Celebrations about the news were naturally small scale. Over WhatsApp and in between naps, given that my second cycle in this round of chemo started the following morning.

And so it's on with this chunk, on with physio. Let's hope that future scans are as positive and efficient as this one. It's certainly the one to beat.


Red can be difficult to wear. It can be Christmassy, or a bit soviet. Therefore, choosing to buy a very red jacket from Zara as my one purchase this month was brave. But like new school shoes from Clarks that you wore straight home (the ‘old’ shoes in the new shoe box) I wore this as soon as I possibly could. And I love it.

Maybe it’s the sleeves?  They feel so fun and optimistic. I never knew I wanted optimistic sleeves, but now I know I do.

Sar x


Scanxiety

It's difficult to pin point when a forthcoming scan goes from being 'just another appointment in the diary' to something that's a constant in the back of your mind. But it does.

Scanxiety is a real thing. For some it's the scan itself. Long and claustrophobic.  For others, waiting for the results.

I'm in the latter camp.

The rational me knows that worrying won't change a thing.  I can't influence this. Three types of news - the good, the bad and the indifferent, that’s it really. I want to be honest in this blog and that means sometimes sharing things that are difficult.

I had let the 'what ifs' consume me and so towards the end of last week, worried and upset I decided to plan a get together for close family and friends. Something that would mean this week wasn't just about the MRI or starting cycle 2 of chemotherapy. Now we'll remember this week for the fun we had on Monday night. The MRI on later today and all the other appointment related stuff are just processes to get through.

Let’s celebrate how far we have come! Another milestone and whatever the result, we can do it.

We are doing it.

Sar x



On a fundraising note colleagues from CLAHRC GM are taking part in the Great Manchester Run on 28th May 2017 and raising money for Brain Tumour Research. If you are able to do so you can sponsor them here. It goes without saying that every little bit helps to #FundTheFight.


Say Something.

Sorry for the obvious post title. I’m still here, still wholeheartedly wanting to blog, but I’ve been trying too hard. Drafting posts that take too much energy for me to muster. Too many images, too many links. I’ve got loads to tell you but I’ve been overcomplicating things. I’ll keep this one simple.

I started the second phase of treatment on 20th April. The first cycle of chemo has been OK so far. I’m tired but it’s hard to know if that’s a hangover from the 6.5 weeks of chemo and radiotherapy in February and March or caused by physical exertion on days I try to do a bit too much. Probably all three.

I’ll be MRI scanned on 16th May and this one feels quite important. It’s the first time we’ll know what effect the first phase of treatment has had. My consultant was positive in April that because I have responded so well to the treatment so far (I haven’t felt that unwell, just tired, and my blood counts have all remained stable) that we can be reasonably hopeful. I am.

The title of this post was prompted by me recently thinking a lot about a holiday in summer 2007. Benicàssim Festival > Toulouse > Andorra > Paris.  On the long drives we only had one CD to listen to. The Best of James. I was just 20 years old, about to start a Fine Art degree and like most 20 year olds excited for what the future might hold. 

I'm sharing 10 things I've been doing, learning and feeling recently below. Some are admittedly more exciting than others but then it's all relative, isn’t it?

  1. This week I walked on a treadmill. Amazingly on a treadmill I can walk a million times better, with a more normal gait. Crazy! The physio team think it’s because the treadmill gives my brain feedback due to it moving, so this prompts the brain to fire the signals about moving my left leg. It’s not that I’m lazy on firm ground, but due to reduced sensation in the leg and foot the ground doesn’t talk to me quite as much as the treadmill does. Harnesses were available in case I fell off but I thought risking it without might be more fun.
  2. The Felden Krais method (recommended by my physiotherapist) is like mindfulness with movement. I've been doing some of the free podcasts - not sure if it's making a difference, but I like it. Good for relaxation.
  3. Seizures come in all shapes and sizes. There’s the ones I’ve known I’ve been having regularly and then the not sure what ‘it’ is, or even if it mattered sensations in my left leg. I now know that ‘it’ is a sensory seizure. The Keppra has been increased again and a second drug prescribed to take at night if they continue. I don’t really like the sound of Clobazam so am holding off taking it for now.
  4. Every increase means a conversation with my GP and a trip to the chemist but this week I discovered I can get my prescriptions delivered to me. For. Free. Why didn't I sort this out sooner? No more Ubers to the chemist. Time and money saved!
  5. Uber is everything. Always has been, but even more so now.
  6. Life admin is a job in itself. I now have so much health related correspondence from various hospitals that I’ve had to set up a full-on ‘health related’ filing system. It took half a day, no less.
  7. Talking to other people in the same boat helps.  I’ve been talking to other patients at the Neuro/Stroke circuits class and in particular, one with similar credentials to me (only a few years older, city centre dweller, similarly busy job before) and despite different causes (stroke), our physical problems are really similar. Left side weakness, foot drop. Similar walking ‘style’. We can share tips too: I’ve just ordered a foldable walking stick from Amazon, having tried out his.
  8. It's great not to have to dry my hair now I'm a proud baldie. I'm also saving the £50 a month I used to spend getting it done. Sorry, Steve.
  9. Being off work gets boring… and lonely at times. As does telling your partner what you’ve done that day. Erm, the dishwasher. Yeah, the dishwasher.
  10. I'm a bit of an Instafiend (if that's not a thing, it is now!!) and do most of my posting on there. You can follow me for all the best updates about what I'm wearing, eating and putting on my face. Important stuff.

Sar x

Helping To Fund The Fight (and ringing the bell).

Along with friends, family and colleagues I recently took part in Wear A Hat Day 2017, fundraising for Brain Tumour Research. The level of interest and generosity has been overwhelming, and I have started a separate fundraising page on the blog to share some pictures from the events. I hope this is just the start of many great things I will be involved in to support the work of an important charity. I won't attempt to explain why this is so important when Brain Tumour Research do this best (you can read more here, and please do).  Show your support and help to raise awareness on social media by using the hashtag #FundTheFight.

THANK YOU to everyone for donating so generously. If there was a bell to ring, I would ring it! For those wondering what this means (sorry, it's a radiotherapy in-joke!) at The Christie, there is a bell attached to a wall in the middle of several radiotherapy treatment suites. At the end of the course of radiotherapy (and often marking the end of treatment altogether) patients ring the bell and staff, along with other patients in the vicinity clap. It is a lovely thing to see, hear and do. I'm not sure if other Cancer Treatment Centres also have this? Maybe some of you will know. 

I look pretty happy here!!  

The Scenic Route.

I have family in West Cumbria and when I was a kid my dad would often choose to take the much longer scenic route home. I was thinking about this earlier as today marks three months since I was discharged from the neuro rehab ward on 6th January. What happened to Christmas and where has the time gone?!

At the moment I could be said to be taking the scenic route.

The thing is, I left hospital with one crutch and a foot-up three months ago and I am still using these now. The days of overnight significant breakthroughs are over.

This is the hard part. Persisting when it might not seem to make a difference, but believing eventually it will.

Sometimes blaming the tools helps. The original foot-up I’ve had since January didn’t seem to be working anymore so I was trying a new one. The new one also didn’t work properly! I mentioned this to my physio yesterday and we put on an industrial one (example below). It didn’t make any difference either. My foot was still scuffing when I walked meaning I have to hitch at the hip to raise my foot and prevent myself from tripping up.

We’d had an unexpected breakthrough. The lack of flexibility in the left ankle/foot/toes is no longer the major issue. Weakness in my left outer and inner thigh is. A month or so ago when the problems with my ‘drop-foot’ were more pronounced, the support (any support) made a massive difference. Now the foot has improved it’s the leg that needs to catch up.

Neuro physiology is incredibly complex, and the body is brilliant at compensating. By the end of January my natural ‘centre’ of gravity had shifted significantly over my right leg because putting weight through my left was a risk.

The challenge is not only sorting the original post-surgery problems, but correcting all the adjustments I’ve unknowingly made since.   

From next week we up the ante and in addition to my weekly one-to-one physio I’ll be going to a neuro/stroke rehab circuits class. I doubt it will be like the Metafit circuits I’ve done before, but am looking forward to it none the less.  My physiotherapist would also like to look at doing some sessions using the Felden Krais method so I’ll let you know what that’s like.

My long term goals haven't changed. I want to walk at what I'd class a normal pace, without the need for aids. One day I’d like to run the 10K I missed in September 2016, and of course, I hope to be back in my heels again. Frivolous as it might sound, it matters. 

At a time living in a major city I am guilty of expecting to get everything now. A taxi in 2 minutes and my restaurant dinner delivered by bike in 30. Neuro rehabilitation of this sort is a marathon and not a sprint. Focusing on what you can do, rather than the things you can’t definitely helps and I made a conscious decision to do this sometime ago.

As for West Cumbria and the views on the scenic route, well, they are quite unbeatable.  As a child and teenager I didn’t understand the logic but I have to say, I do now.


Can we just talk about these grey suede trainers I've found from Whistles. If we are doing trainers, lets make them pale grey leather and suede. Perfect in everyway. The price? Not so perfect I'm afraid.



Treat That Garibaldi Like A Queen.

Having had my last radiotherapy session yesterday, I'll be trying hard not to sit by the window at 2.30 p.m. waiting for my taxi which has been coming at roughly the same time every day.

I left The Christie with my mask (if you ask they will let you keep it). I'm not sure what I'll do with it yet, maybe put it up on the wall or make some sort of Gormley inspired sculpture. Ringing the bell was great once I'd worked out how to do it. In my defence, I don't spend much time ringing bells so was more than a little bit rusty!! Family joined me for the last session and I left a little teary. Happy tears of relief that it was over - in what seemed like a flash to me.

I thought I'd tell you about how I've been caring for my head during the treatment. A really common sight in the waiting rooms of the radiotherapy suites is a sunburn like flaky red skin affliction on the part of the body being treated. This might be the neck, face, or in my case the head and is not unusual.

I've been using two products and whether through sheer chance or dedicated application have not been affected at all. E45 cream has been my best friend. I've used two decent sized tubs and a tube in the 6 and a half weeks, applying every night and (almost) every morning. There were times when I forgot. That's life.  

A favourite and staple Avene product I have pleasingly found another use for during this treatment is the Eau Thermal Water spritz. I use it in summer to cool my face after walking to the office, or to make makeup look more natural and dewy. I'm not ashamed to admit I've been spraying it on my head, and loving it. It is deliciously cooling especially after a hot shower. You may think it is just expensive water in a bottle, and you'd be mostly right but you rarely need to pay full whack as its so often on offer and you know what? It just feels nice.

My scar has been healing well post-surgery but is still very prominent. My mum has kindly re-gifted the Lucas Paw Paw Ointment I bought her in Sydney (you can now buy it in the UK, but you just have to buy it in Australia if you go) as it might be soothing and helpful on the healing front. I'll give it a try and report back.


On a completely different note I thought I'd share the news that I have been asked to record a video about my experiences to be shown at the next meeting of the Manchester Ted Talk Discussion Group. Before surgery I was a regular at the group set up by Craig Millar. Craig is a professional speechwriter and TEDx speaker Coach. Passionate about the power of public speaking I have found Craig to also be a great networker, championing others through this group and on social media.

I am big Ted talk fan, but tend to binge by watching loads in quick succession. The group set up by Craig (which has nearly two thousand members on Meetup) is unique in providing a space for reflection.  The group will generally watch a couple of talks and then discuss in a loosely structured way in smaller groups. There’s a diverse range of Ted fans there - some of my group discussions have included a vet, scientist, writer and teacher. We all had different ideas and perspectives and that’s what makes it interesting.

I’ve included below links to a couple of my favourite Ted talks… an old favourite and a more recent find. it’s hard to choose only two. Don't be put off by the straight talking title of the Larry Smith talk. It's a really funny one, and has an important message at its heart.