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.



One of The Lucky Ones.

Tomorrow marks the end of 6 and a half weeks of radiotherapy and chemotherapy and it seems to have come around really quickly. It got me thinking about the very long list of side effects I was forewarned about before starting. The most common are similar for radiotherapy to the brain and the chemotherapy drug Temozolomide I've been taking.

Tiredness/weakness/lack of energy

Feeling or being sick

Hair loss

Loss of appetite

Headaches

I think I have fared pretty well. I have only really felt significantly more tired in week 6 and towards the end of week 5. Not to the point where I spend time in bed, or even regularly nap but I go to bed earlier and there is now only one 6 o’clock in my life - not the one when the birds sing.

In the last few days I have had headaches, but I’d call them mild – not as bad as you might expect all things considered. I haven’t felt sick at all (and have stacks of untouched anti-sickness tablets).

There was no avoiding the hair loss, but I’m well over that.

All in all I’m feeling pretty lucky.

My consultant tells me that I will most definitely feel worse in the weeks after I finish radiotherapy, as the effects are cumulative. Although I’m sure he’s right, I can’t help hoping that maybe it won’t be so bad.

And so that’s it. This phase is almost done. I’ll be seen again in four weeks to start the first cycle of 6 more months of chemo and I’ll be back in the MRI scanner in around 8 weeks.

I’ve met some really interesting people and been able to experience first-hand how another part of the NHS works - patient transport. What a difficult job NWAS have coordinating the transportation of maybe thousands of patients each day. It’s such an important service for many, particularly those with mobility issues like me.  Most of the time, it works too.



Due to being a bit more tired in the last week or so, I’ve wanted makeup that helps me get ready quickly or in the back of a taxi sometimes.

I had an entirely exclusive relationship with NARS blushers for over 10 years, but recently I’ve been favouring a cream blush. Maybe it’s because my skin is dryer than usual, or it just feels easier to apply. The Royal Blush range from Rimmel, are really cute and come in three shades. Be careful with the packaging as it is a little flimsy.

A tinted SPF has become a new friend too – I always wear an SPF on my face (even in Manchester) and this tinted one means I don’t also need to wear foundation when I can’t be bothered. My only complaint is the lack of shades. Just one at the moment.

Brows are massive now, literally in some cases and that means that there are so many brow products to choose from it can be hard to know where to start. Pencils, gels, powders, primers! For speed I am really liking the Brow Drama range. You literally just brush through, and brows are more present than before.

Another product that makes a different in seconds is the Maybelline Colour Tattoo range of eyeshadows. This one in a bronze colour is perfect for blue and green eyes.

Last but not least…. every tired girl’s best friend. Concealer! Perfect concealers are hard to find. My all-time favourite is from Clarins but NYX have some very good dupes at about a third of the price. Most importantly providing even coverage, without creases.  Do pick your time to visit the NYX stand in Boots Market Street though as it’s usually full of teenagers fighting over the last strobing kit.

Thank you as always for reading.


Let's Talk About Wigs, Baby.

Wigs seem to be the holy grail for ladies with any significant degree of hair loss. In the waiting room people play the ‘is it, isn’t it’ game and people love (myself included) to be told that their wig really doesn’t look like a wig.  

Despite now owning two wigs, I am interested in why the idea of seeing a woman without hair is quite so frightening.  Women should do whatever the hell they like with their heads, hair or no hair.

If wearing a wig makes you feel good, go for it. If you prefer a scarf or turban, that's cool too.

If you feel there are more important things to worry about, then absolutely let it be.

Some women choose to wear wigs so that it’s less immediately obvious that they are having some form of treatment and if you choose a wig very similar to your own hairstyle it might help you to feel more like yourself.  I’ve heard some women say that they can't bear for people to see them without hair and so wear a wig all the time or even (if they can afford it) invest in a hair replacement system.  As someone still wearing makeup every day I completely understand always wanting to look your best but I take my hat (or should that be wig!) off to anyone that can wear a wig all the time.  

I’m happy with the ‘serious’ wig I settled on (the other one is pink) but I don’t find wearing one very comfortable. It's quite tight and it itches and the relief when you take it off is like taking your bra off as soon as you come through the door after a long day at work. Yesterday I took the wig off in the taxi home after treatment as I just needed freedom and air on my head.

Finding a decent wig was a bit of a challenge. The short ones I initially tried made me look like a cross between Deidre Barlow and Alma Baldwin - not winning in the hair department. Wigs are also expensive, particularly if you want one made of human hair. The one I have been wearing was cheap enough to be fully covered by an NHS prescription which was a bonus.

I have been surprised by how few women you see around the hospital or in general that choose not to cover their heads in some way. If covering your head makes you feel better, then that is fine but please don’t suffer in a hot itchy wig because the status quo suggests that being even slightly bald is shameful. It isn't.

I've been out several times now without covering my head (which has had the clipper treatment).  

Did I feel self-conscious? For the first half an hour, Yes. Did anyone around me seem to care? No. I even ate in a nice restaurant on a busy Saturday evening and they didn't sit me at the back or particularly even seem to notice. I don’t cover my head at home because I want to be comfortable (I generally have the heating cranked so I don’t need to cover my head to keep warm) and I really don't care if the postman is offended.

So at the moment at least, I am choosing to have my cake and eat it – sometimes I wear a turban, sometimes I wear the wig and sometimes I dare to bare.

It is with this sentiment that I think we should attempt to normalise hair loss. Only then can choices about how best to deal with hair loss be based solely upon personal preference.



I'm having a bit of a silver moment and have bought some new things online recently.
The silver back pack (Skinny Dip) is much more compatible with walking with a crutch which has been causing me handbag issues.

The silver brogues (asos) feel much smarter than trainers and go perfectly with my all-time favourite culottes from Zara (I recently bought a pair in black and polka dot).

I'm also loving my grey velvet turban (asos).



I'll confess to having neglected the blog a bit recently but do hope to be back on form soon. Thanks for staying on board.

I've got a few new makeup bits that aid getting ready quickly so I'll post about them next time if people are interested.

One last thing and a shameless plug - I am raising money for Brain Tumour Research alongside colleagues and we are taking part in Wear A Hat Day 2017. If you are able to support you can donate via my Just Giving Page. Thank you.


Stories.

Going to the hospital every day is a bit of a drag. There are things I would much rather be doing but I am enjoying hearing so many stories. Taxi drivers share their own tales of ill health, things about their family, careers and how they ended up doing what they are doing.

I loved hearing about the joiner from Manchester City Council's own recovery from stroke and his journey regaining his speech over the course of a year. He shared frustrations with people finishing his sentences for him while fitting me a grab rail in the bathroom. We bonded over not giving up on rehabilitation but having to be patient. I told him I didn’t think I’d need to use the rail for too long, but being able to stand in the shower would be huge progress from where I’d been in December and January.

I get to talk to other patients too, some I now speak to every day. I’ve been able to offer reassurance on a first day that wearing the radiotherapy mask really does get easier. Some are tired of appointments, side effects. Others are hopeful, offering high praise about their consultants. Either way they turn up.

At the core of all these stories is the unpredictable nature of life. That’s what makes it interesting, fun and rewarding. It’s also what makes it difficult at times.

I’m working on an MBA assignment this week so this post is a bit shorter than usual. My hair has just started coming out in week three of radiotherapy/chemo. There's just something about losing hair that is unsettling despite knowing it will happen.  I'm now sporting some quite big bald patches and if I can get agreement from the radiotherapists (due to the effect on the fitting of the mask) I'm thinking of going for the full head shave.


I'm been doing a bit of painting recently and the video below captures the evolution of a painting I've been working on. Not quite finished yet but almost.



Five Thoughts on Five Sessions of Radiotherapy.

Following surgery, the results from the biopsy took a while to come back as the labs weren’t fully operational over Christmas and New Year.

At a meeting with my Clinical Oncologist in early January I got the low-down on the make-up of the tumour cells tested. This confirmed a Low-Grade Glioma, and specifically a Grade II Diffuse Astrocytoma.

The tumour tissue was tested for the IDH1 mutation, and my tumour is IDH1 negative. My Oncologist explained that the presence of the IDH1 mutation can be a sign of more favourable outcomes and responses to treatment. Research (and the teams own experience) indicates that IDH1 negative tumours may behave more aggressively and have an increased tendency to reoccur.

Given this (and the fact that my tumour is now considered inoperable) a fairly aggressive approach to treatment is being taken. And I’m all up for that.

As with all of these things no conclusions can be drawn at this stage and there’s a great degree of uncertainty.

I can tell you what the next few weeks and months will look like. Concurrent chemotherapy and radiotherapy for 6 weeks (33 sessions of radiotherapy to be precise), followed by 6 months of chemotherapy after a short break in-between.

At the end of the first week I’m sharing some thoughts below.

I’ve mainly been getting to grips with my new medications (drawing the flowchart helped!!). I wiggled the toes on my left foot today for the first time since surgery and this is a pretty big leap in my rehabilitation. I’m really chuffed.

  • By the second session you start to recognise people in the waiting room. It’s quite strange going to the same place every day and before the fatigue sets in I’m trying to be productive in the mornings so my days are not only about radiotherapy.

  • There’s nothing more disappointing than hearing the Radiographers coming back into the room (thinking your treatment is finished) when in fact your mask wasn’t quite aligned properly so it needs to be adjusted and treatment started again.

  • I’m desperate to get my hair cut but cutting anymore off than a very minimal trim would mean my mask won’t fit properly. I’m going to wait and see what my hair loss is like but I may well join the wig club and have some fun with it.

  • I wore my all-time favourite red lipstick each day and it really lifted me. I’m not sure if I’m the only person wearing lipstick with my radiotherapy mask but I don’t really care. I haven’t been told off yet.

  • Day five was bittersweet. I was pleased to have finished the first week and got my nails done to celebrate but I’ve been having seizures affecting the left side of my body in the last few weeks and had one in the waiting area. There were benefits to having it there – it was logged on my file immediately and I was fully checked over by a Doctor. I’m already increasing my anti-seizure meds but may need to start taking steroids again.  Watch this space and I’ll report back.

Thanks as always for reading.



Ruby Woo - the most classic and timeless red. The cool tone suits most and whitens teeth.

Makes you look and feel instantly polished and like you could live in Paris. High maintenance due to the very matte finish, but worth the effort in my opinion.


How Was It For You?

Have you had surgery before the anesthetist asked? My adenoids out when I was little. OK. Not doing things by halves then? And so it began.

In the anesthetics room we chatted about what we would be eating on Christmas Day. There was a team of three anesthetists with one in charge and they were absolutely great. The process is quite variable due to the stimulation and testing. Up to 6 hours was the ball park. My family started to really worry after 8. I don't know exactly how long it lasted but it was between 10 and 11 hours.

Prior to surgery I met with a Neuropsychologist to discuss the process and also completed neurocognitive tests. I was able to ask questions and felt pretty clear about what I would have to do and this helped. Surgery is however unpredictable. I was forewarned that the stimulation of the brain induces seizures in 20-30% of patients but optimistically thought I'd be in the unaffected 70-80%. This proved not to be the case and I had seizures immediately. I was able to tell the team I was having seizures but unable to stop them happening. Ice cold water is poured over the brain to control the activity and it works.  

I have to say that hearing the words "Sorry, but we have been unable to identify a safe route and therefore need to drill into another part of your head" is not top of the list of things you want to hear but I felt no pain. The drill is LOUD.

I’d been nil by mouth, and got incredibly thirsty during the testing phases and each time I asked was given a bundle of wet green swabs to suck on. It was amazingly refreshing!

Once you really understand the rationale for being awake the alternative is probably more frightening. Functional MRIs had indicated there was a margin of safety around the tumour but in reality it was more diffuse and surgery was eventually abandoned as it was clear from the prolonged stimulation and testing removing any more cells than needed for a biopsy would leave me permanently paralysed on my left side. The team did their absolute best.

After surgery I was unable to move my left leg, foot, lift my left arm or hold anything. It took three physiotherapists to support me stand, and yet six weeks after surgery (and three weeks after being discharged) I'm walking!! Yes, I'm slow and need a crutch but to say I'm grateful is an understatement.  If I have to wear my foot-up for the rest of my life, then so be it.

As you probably gathered the treatment journey continues. Not always straightforward, but then perhaps you wouldn’t expect it to be. This weekend I’ll try swimming and see how that goes. In the meantime, at least I’m making a dint in my ever-growing stack of unread books in all the waiting rooms I now frequent.

Thanks ever so much for reading.


The novelty of my practical and comfy Gazelles ordered from my hospital bed is now wearing off a little and I'm starting to lust over other lace up shoes compatible with my foot up like the brogues below (Office). I'm also enjoying stripes as always and jumpers with interesting sleeves (Warehouse & ASOS) - links below.



Preparing For Brain Surgery.

I can’t really give you any advice on how best to prepare for brain surgery, but I can tell you I had a good time in the weeks before mine.

Given I was going to be out-of-action for a while I was advised (thank you!!) to do some nice things beforehand and I certainly went to town on that front.

I've read that a common fear is waking up during surgery and this is reported to have happened. As my tumour was known to be in what Neurosurgeons call an ‘eloquent’ part of the brain that is exactly what would be happening. I would be woken up part-way through to undergo testing whilst areas of my brain were stimulated with an electrical current.

Work was a welcomed distraction for me so I worked up until the week before my surgery and then milked it for all it was worth doing nice things.

I lunched with colleagues at Fumo and Graphene. I celebrated my 30th birthday early dancing around an orchid (it was a gift!!) with my girlfriends into the early hours.

I was almost the bowling champ coming in second when a group of us went to All Star Lanes, beating my sister and fiancé for the first time in history. Still a victory in my book.

I spent a weekend at the amazing Gleneagles enjoying spa treatments, swimming and eating my weight in steak.  

The night before my operation I had a long bath and did some mindfulness and breathing exercises. These came in handy in the surgery itself and I remember describing the ocean pools on Bondi Beach to the Neuropsychologist as well as talking about what I had for tea the night before.

I’ll share details about how and why my surgery didn’t work out as planned in a future post. But what I can say is I’m incredibly grateful that I was awake.

Coping with the process and being here to tell the tale puts a lot of things into perspective. In a funny way it feels like an achievement. All those little things you worried about - the size of your arse, public speaking, being wrong. Forget it. You can do anything.

I adopted a ‘probably only once’ attitude to my surgery and therefore treated myself to new things for hospital. This included a new dressing gown (The White Company) which was on offer when I bought it but now seems to have gone back up to full price. New slippers (Next) which are now in the sale.  The Clinique spritz was great for moisturising easily whilst in hospital and when I was on a permanently hot ward it was cooling too. I would highly recommend the sleep range from This Works, the mini pillow spray and pulse point roller were very relaxing. Items are linked below.



T-bomb.

What do you do when you are told you have a brain tumour? It's quite likely you'll cry and that's fine, but what do you do after that?

We went for lunch at Jamie's Italian. We didn't really want to go home as we were both off work for the day. On the way there Sinead O'Connor Nothing Compares to You played on the radio and we laughed about the unfortunate timing.  The following day we flew to Lisbon for the weekend. The trip was already planned and it seemed as good a place as any to come to terms with the news.

It was the 7th October when the T-bomb was dropped. The consultant informed me that the MRI scan had identified a brain tumour and I had Symptomatic Epilepsy. I was to start taking anti-seizure medication straight away and a Neuro Oncology MDT would decide on appropriate treatment.

I'd been lucky to have had very few symptoms prior to my diagnosis. I'd experienced some weakness on my left side in bed one night which was thought to be caused by a trapped nerve.  It seemed to fit the bill so I carried on as normal.

A couple of months later in August I had a big seizure in my sleep after a day at York Races and a very late night.  I was rushed to A & E, checked out and advised that I should be referred to a Neurologist. An MRI scan followed.

I don't think it matters where you go but having some time to process the information helps. I focused on the positives. I was living a normal life and didn't feel ill. It was expected to be low-grade (non-cancerous).

I thought about what I might put on a bucket list but when I got back home things felt pretty much the same as they had before. Life carries on and that is strangely comforting. I still emptied the dishwasher and put the rubbish out, but I also thought about what I was doing with my life and why. I can't claim to have found all the answers yet but have learnt a few things...

1. The internet will confirm your worst fears if you let it. Don't spend too much time looking.

2. Lisbon is a great city. Go for the custard tarts if for nothing else.

3. Get used to waiting. For test results, appointments, news. Waiting is the worst bit.


I love white jeans in the sun - they somehow feel smarter than blue denim. Always a bit risky where food and wine are concerned but I'm pleased to say I left the Time Out Market stain free! I've worn the grey H & M ballet pumps non-stop since I bought them in September and they were perfect for the cobbles.  Items linked below (jeans - Topshop, shirt - Zara, shoes - H & M).