I get knocked down…

I’ll warn you in advance that this isn’t going to be the most positive of posts. I have recently come out of hospital after a five-night stay.  The culprit this time?  The port.  It was becoming so painful that I asked the doctors at the research centre to have a look at it for me and they immediately booked me in for an ultrasound and chest X-ray.  The tests revealed that I had a haematoma and a vein was blocked with a clot, so it was back to A&E for the second time in as many months.  By the time the taxi pulled up outside the hospital it was so painful that I was in tears.

I was admitted to the oncology ward and it was decided that the port should be removed. This was not a pleasant experience. I was told it would be under general anaesthetic but when I got to the department for the procedure the surgeon told me it would be local.  This caught me off guard and I started to panic; I tried not to cry but couldn’t help the tears running down my cheeks as the cut was made. I felt so vulnerable laid on that table, wide awake and with my chest exposed. But the anaesthetist held my hand and talked to me while the port was removed, and I was grateful for a comforting voice.

I couldn’t believe my bad luck; I’d never heard of this happening to anyone before. I was just about back on my feet from the previous hospital stay. I’d been feeling stronger and more positive and what happens?  Life deals me another blow, leaving me asking how much of this bullshit can I realistically take.

The port was out but the problems didn’t stop there.  It was decided not to give me any blood thinners on the Friday and to let the area settle down over the weekend, but by Monday I was told I now had clots in my right arm as well.

When I complained to the vascular doctor that I had pains running up the inside of my arm and had restricted movement he said he thought I had a frozen shoulder; the swelling from the clot meant that  I couldn’t turn my neck and this was the result. I would need physio and any thought of me returning to yoga when I got home was quickly dashed. The doctor also informed me I’d probably be on Heprin, a blood thinner, for at least the next six months.  I have to give myself this injection every day.

When I got back to my side room I was told I was being shipped out and moved onto a shared ward, which was probably one of the most traumatic experiences of the whole stay! I know that sounds dramatic but being on a shared hospital ward is like taking part in the most miserable version of Big Brother imaginable. Throw in the fact that you all have a life-threatening illness into the mix and you arrive at ward D for depressing.  A poor woman in her eighties in the bed opposite me was vomiting almost constantly from 12am to 4am and another lady who looked close to death was just a bed away.  Psychologically, hospitals are the absolute worst places to be when you’re unwell.

Tom was amazing as usual and spent as much time with me as possible and my mum travelled down from up north to be by my side when Tom couldn’t be.

I’m back home now and feeling very fragile. Mum and I watched Call the Midwife last night and one of the storylines was of a man whose young wife died in the final weeks of her pregnancy.  They had been so in love and were looking forward to a future together. By the time she passed away near to the end of the episode I was heaving empathetic sobs.

That’s the thing you see, when I get a setback I start thinking negatively. I’m pissed off this happened to me and wish I’d never had the port fitted; I’m worried that the trial will be delayed because I might be deemed not fit enough to take part. I know I’ve been here before I just didn’t think it would be so soon to be feeling like this again.

I was meant to be travelling to see my sister and nephew in Bratislava this week but that had to be cancelled, much like trips to Israel and New York were scrapped when I found out I had brain mets, and of course our New Year’s celebrations were shat on from high above with a case of neutropenic sepsis. I’m not going to apologise for moaning because at the moment I feel like it’s so terribly unfair, but I’m learning life keeps happening no matter what.  There’s no such thing as your fair share of bad luck, so you’ve just got to pick yourself back up and have faith that it will change.

Trials and tribulations

“I thought I had it but no, looks like I’ll have to get the doctor,” said the smiley nurse before trotting off. She’d had two attempts at inserting a needle and of course, with my crap veins, two failures. Track marks and bruises stained my arms making me look like an extra from Trainspotting.

The doctor arrived and another two attempts were made but to no avail. My CT scan was swiftly cancelled. Shit, shit and flying shit, I really needed the scan to see if the Eribulin chemotherapy was working. It was decided to reschedule it for the following week when I was due to have a port fitted into my chest; that way the skilled chemo nurses could cannulate me and we could get both procedures done in one day.

I’ve never been bothered about needles but the last few visits to the hospital have led to pain, discomfort and an increasing sense of dread.  The nurse can’t tell immediately if the needle she has just inserted hasn’t reached its target.  There is a certain amount of manoeuvring; a little turn right, maybe a nudge left, pushing in a bit deeper.  My shy, retiring veins seem to sense when a needle is near, shrinking away just after the nurse’s refrain, “short, sharp scratch,” because they know as I do that it will neither be short, nor just a scratch.

The day before the scan I was worried about the nurses not being able to find a vein and brought this up in my EFT session with Emma. She encouraged me to tap the mantra ‘my veins are strong and robust,’ at every opportunity over the next 24 hours. Remarkably given the recent record, the chemo nurse managed both to put the cannula and take blood from a different vein at the first attempt. Later, when we were told at the CT scanning department that I needed a bigger cannula for the dye to be injected into we returned to the chemo ward and the same nurse managed to cannulate me first time yet again. Something that hadn’t been achieved in about six months!

I’ve had a few scans in the last twenty months and you’re always told the same thing. “You’ll get a strange taste in your mouth and then you might feel like you’ve wet yourself, but don’t worry, it’s just the dye.” No matter how reassuring their bedside manner, there’s nothing relaxing about feeling like you’re pissing yourself whilst laid on a bed with three people watching you from behind a screen.

As I passed slowly through the giant Polo mint-shaped scanner I used the visualisation techniques I’d been taught, imagining the cancer being wiped away by a white handkerchief (I’m aware I sound quite mad) and willing a clean scan.

When I jumped up to leave the radiographer asked, “Is someone with you today?” and immediately I started to worry; I imagined that the scans were bad and that she was checking I had support with me.  This made no sense as I wouldn’t get the results until the following Monday but that’s how my mind works.  From positivity to hideous outcomes in the blink of an eye.

Next stop was the port and by this point I was pleased I was having a general anaesthetic. Finally, a bit of peace. The operation went smoothly and Tom and I were soon in a taxi on the way home. We had a weekend of seeing friends and relaxing ahead of us, and then on Monday we’d see Professor Hope to find out if the Eribulin was working.

I’m not sure why but I don’t get as nervous about results as I used to. Perhaps after all the scans and difficult waiting I’ve used up all my nervous energy; I just don’t get that feeling of my heart taking a dive into my stomach any more.  I think Professor Hope has a lot to do with it too because I know he’ll have a plan that he’ll have thought hard about.

I could tell Tom was nervous but the wait wasn’t long and after welcoming us in Professor Hope thankfully got straight to the point. “The tumours haven’t shrunk but they’ve not progressed either.”

How is it that the option you don’t even consider is often the one that materialises? How do you learn to expect the unexpected? I’d only thought about how I’d feel if they’d gotten smaller or grown; not if they’d stayed the same size. Professor Hope explained that the Eribulin had had an effect, but in his book this wasn’t good enough.  He wanted me to try something different.

A few weeks before Christmas I received an email from a research centre that Professor Hope had put me in touch with the previous summer.  They told me about a trial coming up but specified that to be eligible my cancer had to test positive for a certain receptor, which is only present in 20% of cancers. This is my interpretation of the information so I might be totally wrong but science was never my strong point! In any case I signed the consent form allowing them to test an old tumour sample that must have been hanging around in a fridge somewhere and thought nothing else of it.  A one in five chance did not sound like I’d be going on this trial.

Remarkably, I was wrong. A week before my CT scan I was told that I was eligible. Finally here was an occasion where I fitted into the slim percentage for a good reason! The chance of getting breast cancer in your 20s is about 1 in 2000, and only 20% of women with breast cancer have the triple negative variant that I do. God knows how miniscule the percentage must be of women in their twenties who have a hormone receptive breast cancer that ‘flips’ to triple negative, but I’m sure you get my point.

On this occasion the timing was perfect. The call came just before we were due to decide what plan of action to take if it turned out that the Eribulin hadn’t been working, presenting us with another option.

And so I’m headed for a clinical trial. I went for a meeting yesterday where the doctor explained all the ins and outs in a level of technical detail which I just about understood after he drew a sketch of how the drug works. Brainy Tom seemed to pick it up with just verbal explanation but Thicko At The Back needed a bit of artwork to help her understand just what was going on!

How do I feel? I’m on neither end of the emotional scale. I’m not hugely excited to be on a trial but nor am I devastated by the news that the cancer hasn’t shrunk. I trust Professor Hope to make the right choices for me, and from the couple of times I’ve met them I trust the team at the research centre as well. I’m getting used to the road taking sharp turns and learning to just follow the path that is laid before me.

And the bonus if this stuff works? (I’ll have to call it ‘stuff’ as it’s so new that its name is just a combination of letters and numbers) I may have hair just in time for the wedding.  From a vanity point of view things are looking up!

Achieving and believing

I have to start this post with a confession; my confidence has been knocked. Since the hospital stay over New Year I’ve been feeling pretty down, and for the first two weeks of 2012 have found myself looking at Tom and welling up.

Still feeling weak as I recovered from a mystery virus, I spent most of my days in bed watching Six Feet Under, a programme where every episode begins with a death. It might not seem the best box set to be working my way through in my current state of mind, but I was hooked. Yet however entertaining it might be, it was hardly an occupation that made me feel I was achieving anything with my life.

The sadness would creep over me as soon as I woke. Every morning I ask myself how I feel, and these mornings were all filled with the same answers; weak, a bit sick and thoroughly pissed off.

I clearly needed to rest, but my mind was railing against what my body was telling me to do. I wanted to clean the flat, to be able to cook for Tom, to meet friends for coffee, to have the energy to do some yoga. I wanted my appetite back. Even the simplest task of cleaning the kitchen was too great for me.

I wasn’t eating well, I hadn’t been drinking my Chinese tea, the green shit sat untouched on the table, and I found myself falling asleep during every meditation. I felt disconnected from the world and unable to reply to all my emails and texts. I didn’t want to write a new post on the blog and I didn’t want any visitors.

I was overcome by guilt at what I perceived as being a failure to keep the faith and couldn’t see a way out of it. Well this is it, isn’t it? I thought. My life from now on would be an endless cycle of treatment after treatment; a treadmill of hospitals, needles and never being able to promise I can make a social commitment in fear that that day will be an ‘off day.’

I knew I needed to do something to get myself out of this rut so I booked in for EFT with Emma. An EFT session is similar to a session with a psychologist in many ways, but I’ve found that most of the psychologists I’ve seen tend to err on the side of pessimism.

One recently suggested that I was trying to mend a certain relationship because I had a ‘limited amount of time left.’ It may have been a casual, throwaway comment, but I picked her up on it and it stuck with me – she thinks I’m going to die soon.

With Emma it’s entirely different. She challenged my negative outlook and reminded me that my future is far from written. The problem was that the knock I’d taken by being hospitalised over New Year had made me forget that I can beat this. The aim is to beat the stats, not be a victim of them.

Emma told me a few home truths I think many of us forget. We can often be our own harshest judges. She asked me whether, If the roles were reversed and Tom was sat on the sofa after a chemo, I would be leaving him a ‘to do’ list; to clean the kitchen, do a food shop. Of course not, yet I was expecting it of myself.

“Have you always been a high achiever?” Emma asked me. I’d never really thought about it, but I suppose that I am proud of what I’ve achieved in my profession. I’d known what I’d wanted to do since I was fifteen and pretty much dedicated my life to my career.

In some ways I’m glad I was so determined; being a broadcast journalist is a brilliant job and fantastically rewarding. I was working for national channels by the time I was 25 and had done it the hard way, starting out in local radio.

But the hours are long and your life gets overtaken by the job. It was all about my career and looking back I led an unhealthy life. Fourteen hour days, six or seven-day weeks, grabbing any old ready meal, accompanied by a glass of wine most nights. Unfortunately, it took cancer to stop me in my tracks.

Emma and I talked about achievement. What did I think I’d achieved most in my life? I was glad I’d done well in my career but that wasn’t what I treasured and was most proud of. I consider my strong relationship with Tom and the amazing group of friends I have to be my biggest achievements. I’m never going to look back from my deathbed and think, ‘If only I’d done the washing up that time when I’d just had chemo.’

As Emma pointed out, some would consider a high achiever to be someone who sets out to achieve the impossible, who tries to win even when the odds are stacked against them. Today, I’m feeling well and positive again, having just returned from a lovely Sunday lunch with friends who made me laugh and forget all the bullshit for an afternoon. I’m typing with Tom by my side reading a three-week-old Observer and I feel I can be that high achiever again. But my project isn’t a clean flat or cooking dinner for Tom every night, my project is to beat this disease – and that will be my greatest achievement yet.

p.s. Tom would like to point out that cooking dinner for him every night is a very valid achievement and that the Observer was only two weeks old.

p.p.s  I wouldn’t usually use the blog for something like this but it’s my blog so sod it!  One of my best friends and one of the nicest people I’ve ever met is running the Brighton Marathon in April for Cancer Research UK.  Matthew has accompanied me to many of my chemo treatments and has thus seen first hand what it’s like to be a cancer patient.  I think for that reason he decided to set himself this massive challenge and raise money for a charity that will hopefully one day be responsible for a cure for this hideous disease.  This is no mean feat as Matt hadn’t even been on a run before he started training for the marathon.  Please give if you can.

http://www.justgiving.com/MatthewMiles1

Escape to victory

I’m out!  And feeling a lot better.  Thank you for all your warm wishes, prayers and concern. For the purposes of political correctness no Germans were involved in my hospitalisation.

They cut me out at the last minute.

Things can only get better…


Big baldy, little baldy

It’s New Year’s Day and it seems appropriate that I should be planning a great escape of my own. I’ve been stuck in a hospital in Essex for three days now, which partly explains my delay in posting, but before I get to the whys and wherefores I need to rewind a couple of weeks.

After my last chemo of the year my dad kindly picked me up from London so I didn’t have to schlep across town to Kings Cross. Once I arrived home I finally met my beautiful nephew Gio and was spoilt rotten by my good friend Sarah whose house I was staying at as mum’s was full with my sister, her husband and the little one.

Sarah, Sam the elf and me

It was a relaxed, hassle free Christmas and lovely to spend time with my family as well as catching up with some old friends. Making the trip up north had been a big decision because it meant being apart from Tom, and as we all know from the previous doctors’ predictions this Christmas was supposed be my last, but as we’d all decided that was a big pile of shit I made the choice as if it were any other year.

On the 27th I travelled down to Tom’s mum’s in Essex but just a day later developed a fever of almost 40 degrees, leaving me shivering and suffering, but foolishly I assumed it was chemo side effects. This was completely stupid of me, as before I’d started Eribulin I’d been shown a DVD about the risks of getting a fever while on chemo, but Tom called the chemo hotline and we were advised to immediately go to A&E.

Despite the fact that I was feeling pretty rough, when we arrived at the local hospital I presumed I’d get IV antibiotics and be out of there the same night, but unfortunately that was not the case. I was diagnosed with neutropenic sepsis, the dangers of which were explained to us, so although I was pissed off to be in hospital I knew it was the right place for me.

I was moved to a spare bed on the plastics ward where I spent two nights feeling particularly sorry for myself, thinking about the things I wanted to be doing between Christmas and New Year’s Eve. Yet Tom flouted all visiting hours and stayed with me from 10 in the morning until 11 at night, trying to keep my spirits up.

The nurses on plastics were lovely, but unfortunately one Senior House Officer decided to use me as a pin-cushion, despite my warning that I had terrible veins because of all the chemo.

“Maybe we should wait for the anaesthetist.’ I suggested after two failed, painful attempts. I had been promised that one would come up to specially to insert a cannula, due to their vein-finding skills. ‘Some chemo nurses can’t even find one’.

“Oh no, I’ll be fine. I can see lots of juicy veins here,” she said dismissively.

Now I may not have six years of medical training, but I knew that this was the biggest bullshit lie going because when any chemo nurse sees my arm they sigh and get a bucket of hot water to help bring the veins out. Unfortunately for me, the ‘I know better than you’ SHO had already decided she could do it, but five agonising attempts later she was forced to admit defeat. There was no apology; she simply left the room with a spring in her step and a trail of destruction behind her. The nurse who came in shortly afterwards found a tourniquet on the floor and we later discovered a used needle she’d cast aside on the floor by my bedside.

It was decided I should be moved to the Oncology Ward where my needs would be better met. At what should be my prime of 28 years old I was being wheeled in wheelchair at 11pm at night through dark hospital hallways. Whenever I’m ill I’m reminded of the fragility of my situation. I feel bad because I don’t stick to my food regime, you can’t juice in hospital, and I could hardly get to the loo without collapsing so whatever food you can force down feels like a victory.

I was wheeled onto the ward and was immediately hit with the smell of excrement as we passed one particular room. I was parked next to the reception desk as the porter tried to find a nurse. Looking to my left, my eyes met those of a tall, slim woman in her 40s. Her face was drawn and her hollow eyes red raw with crying; her almost blank expression was haunting. A man came out of the room she was standing outside and gave her a hug.

As Tom and I settled into the new room I warned him how difficult it might be on this ward. This place was a reminder of the evil of cancer; the indignity, the heart-wrenchingly cruel way loved ones are snatched from us. I feared he would see this as he wandered out to get tea or coffee or a paper. I couldn’t get that woman’s face out of my mind. I refuse to believe Tom will have to go through that but still find it hard to breathe when the thought enters my head.

Despite this I try to stay as positive as possible. There have been times over the last few days I’ve asked pointless questions through heaving sobs, “Why is so much shit being thrown at me?” “What did I do to deserve this?” Some days being positive just isn’t an option and it’s not always possible to suppress the self-pity.

I’m 28 and spending New Years Eve in a hospital room overlooking a car park, for fuck’s sake. Admittedly there’s probably some rave happening in Peckham in a car park so maybe that makes me kinda cool, but still. Then I remind myself I’m doing this with the man who laughs in the face of Visiting Hours; the person I love most in the world, and so you talk yourself into remembering the truly important things in life. Some people will have spent this Christmas in hospital with a child who has cancer and others will have spent it on a beautiful Caribbean island happily playing in the sea. That’s just the way it goes.

So my Christmas started off joyful and relaxed, and after Boxing Day it took a bit of a nosedive. I’m still in hospital waiting to be discharged but as it’s a weekend the most senior staff member appears to be the porter and he doesn’t seem that keen on letting me out. As for what the rest of 2012 will bring – well, none of us can predict that, but I hope it’s a bloody great one for you all.

Losing hair, making friends

Au naturelle

This time around I knew what to expect. When you pull at your hair and a clump falls out there’s something strangely addictive about it. It’s alien, so what do you do? Reach for another handful, of course.

The loss of eyebrows and eyelashes, however, are a different proposition. I decided to get them tattooed on and through the blog a lovely lady called Julie who runs a semi-permanent make-up place in London got in touch offering to do them for me at a generous discount.  My lashes and brows were, and still are, very much there but I decided that if I sorted them out there and then I wouldn’t have some crazy double-brow when the hairs do eventually come back.

Miffy accompanied me to Julie’s, and as soon as she greeted us at the door with a friendly Geordie accent I warmed to her. Julie explained that she’d been specialising in alopecia for years and was the ideal person to advise me on wigs.  I’d wanted to go all out and get real hair this time, but with my own expected to return and real hair wigs so expensive, Julie recommended that I opt for synthetic and offered to come shopping with me the following week.

Now I’m not going to lie, getting the eyeliner tattoo hurts, but when you get needles stuck into you on a regular basis, have been pushed through claustrophobic scanning machines and had a breast chopped off you can manage a bit of pain.  The eyebrow bit was fine and the result was amazing; now when the lashes and brows go I won’t be some big old moon face and I’ll at least have some definition around my eyes.  Job done, and the ultimate bonus was that I’d made a new friend in Julie.

I’m struck by the people who have come into my life because of cancer.  So many interesting characters that I would never have met if it hadn’t been for this bastard disease.  It’s not just face-to-face acquaintances either; the power of the internet has introduced me to the lovely Francesca Pattison, Lisa Lynch and Kris Hallenga, strong, feisty and funny women of about my age who are going through a similar situation.

“If I can keep it for the fashion show I’ll be happy,” I said to Miffy as we left West London, but by the time Thursday rolled around the back of my head resembled that of a mangy dog, so after donning a headscarf for the event itself I decided to get it all shaved off.

The mangy dog look - so this season!

I booked in with local hairdresser Lisa and I was a bit worried about taking my hat off in front of a stranger but she cheerfully assessed the damage and got the shears out. The plan was to shave ‘F*ck You Cancer’ into the back of my head (for the blog, not to walk around like some crazy person) but I hadn’t had the time and by this point there wasn’t enough of my hair left so Lisa decided to get creative.

The end result was that of a glitter-strewn bauble or as my brother put it, ‘a Christmas neo-nazi.’  Somehow I doubt if I’d been at a Brixton barbers’ that they would have been able to magically produce a huge leopard-print make-up box replete with glitter and silver eye-liner.

Parental Advisory Warning!

Now freshly bald there were wigs to be bought.  Julie had even been to check out a place near to her to see how good they were and sent me some pictures.  We arranged to meet once I was back in London and the afternoon ended up being really good fun.  The wigs were so much more realistic than I had expected; the first time around I had bought a shoulder length blonde one that I wore on just one occasion because I hated it so much.  With Julie’s expert advice I emerged with one blonde and one dark, confident in my choices, and this time I intend on having fun with them.

Since the bout of tonsillitis I’ve been troubled by a hacking cough. I’d like you all to think I’m positive all the time but that’s just not true.  I panicked that it could be the cancer rather than a simple cold.  I was sure that with such an awful cough my white blood cell count would be in my boots, which would have ruled out chemo on Monday.  The knock on effect would be to delay chemo and then my Christmas plans to finally meet my new nephew would be screwed.

I felt drained from the lack of sleep from hacking all night and for the first time in a while I was having a real wobble.  “It’s just a cold,” Tom reassured me, but  when you know you have cancer in your lungs and you can see a red mark on your chest in the mirror every day it’s a bit harder to brush it off as just a winter bug.

On the Monday morning I saw Professor Hope, as I do before every chemo, and he was as cheery as ever.  I had my new wig on and was almost nervous about him seeing it, as I am with anyone who hasn’t. I was unsure whether to mention it, but he commented straight away, complimenting me on it and putting me at ease.  He listened to my chest and told me that apart from a bit of wheeziness it was totally clear – nothing to worry about, but he prescribed me an inhaler just to help.  Relief washed over me; after next Monday I won’t have chemo until January 9th.

“That’s the day after my birthday”, I told him.

“And you’ll be 29?  Anything big planned for your 30th?”

And there it was again, the big difference between my old consultant and good old Prof Hope; a belief in me and that we’ll work together to somehow get through this.

Miffy came to meet me after my consultation and we waited for me to get my bloods done.  I showed her my inhaler. Now, if you’ve read ‘Worse things happen in Milan’ you’ll know about Miffy’s unique turns of phrase.  “Eugh.  This is just like the film Stand By Me,” she observed.

“How the eff is this like Stand By Me? An eighties film about four boys trying find a corpse.”

“’Cos you’re like the weak one with that inhaler and I’m like the three other strong ones!” (I think she might have been getting confused with The Goonies).

Giggling as I entered the blood room I forgot about my fear of the low blood count.  We took ourselves off to TK Maxx for the two hour wait to see if all was well for chemo.

And guess what? My white blood cell count was higher than before I’d even started chemo.  So sod the sceptics!  All the mediation, lovely Emma at EFT, Michael the smiley, super bright herbalist, and the new diet; it’s got to be working.  I don’t want to sound cocky because I’m well aware there will be dips in this path I’m on but seeing those scribbled numbers under ‘WBC’ gave me a huge boost – a validation that what I know is mentally making me feel better is also physically having an effect.  I have complete faith in Professor Hope’s medical plan and now I believe one hundred percent in my alternative one too.

The day after chemo I was to go and get one of the wigs cut.  The lovely Jo from Heat Magazine who has been reading the blog from the very start arranged for me to see Trevor Sorbie at his Covent Garden Salon.  As I write this I’m reminded of all the fantastic, kind-hearted people that have come into my life since my secondary diagnosis.

Trevor Sorbie set up My New Hair to help women like me who lose their hair either because of cancer treatment or for some other medical reason and the whole experience was fantastic.  Trevor said he thought the blonde wig didn’t need anything done to it, but felt he could improve the brunette one.  He really is such a lovely man, immediately putting me at ease, and of course he is a very talented hairdresser.

Trevor and I after the cut

I can’t recommend the charity enough.  I do hope people remember to give to causes like this, because feeling like you don’t even look like yourself when you’re going through the most stressful time of your life is pretty depressing.  People like Trevor are giving women like me the psychological boost that they need. Yes, I’ve got cancer and my priorities have changed but that doesn’t mean I don’t want to look the best I can.  I still want my hair to look good, it still cheers me up to buy a dress for a night out and I’ll still cringe at photos on facebook if I think I look like shit. And My New Hair gets that.

God this has gone on a bit hasn’t it?  Well done if you’re not snoring face down on your keyboard, but to round things off I have to mention the tweet from Stephen Fry.  When I woke up feeling groggy, tonsillitis making me sound like one of Marge Simpson’s sisters, hearing that the legendary Stephen Fry had tweeted about the blog made my year! So thank you very much Mr Fry and welcome to anyone who has stopped by the blog because of his tweet.

Blonde...

...or brunette? Answers on a postcard

It’s not about the money…

Lora and I attempting to make a speech!

I’ve been thinking about how to write this latest post without it reading like a regional newspaper article about a local charity event because for me it was so much more than that.

The fashion show was the brainchild of a childhood friend. Lora and I had known each other since we were four and until the age of eighteen we were best friends. As often happens in adolescence we grew apart and then we eventually lost touch when I moved away. When she heard that I was first diagnosed with breast cancer Lora got back in touch through Facebook to wish me well, and then when I was told the cancer had spread Lora discovered the blog and asked if I could suggest a charity she could fundraise for. I proposed Coppafeel.

Without giving it much thought, I imagined that Lora might be planning a 10k run or something similar to raise some cash, so when she told me that she was going to organise a fashion show she surpassed all my expectations. It was such an ambitious project that, health permitting, I knew I had to attend.

I was to have chemo on the Monday and the event would be on the Thursday. The trip was entirely dependant on how my body would take the treatment, so when I was diagnosed with tonsillitis on the Wednesday morning it was touch and go. Fortunately, in the afternoon I didn’t feel too unwell, so I booked a last minute train and made the journey back up to the North East.

I was nervous about attending; my hair at this point had mostly come out at the back so I would have to wear a headscarf. I feared that people would see a sick cancer patient rather than me – a girl who, despite all these keratinous cancerous cells, is actually happy with her lot.

One of my best friends, Sarah, set me straight. “They’re all here to support you. Just remember that the fashion show is the main event, and I’ll be on scarf watch.”  Hers was the stern, no nonsense voice that I needed to hear.

As we walked in I couldn’t believe how professional it all looked; glamorous girls in matching pink dresses selling raffle tickets, beautiful lighting, pink cupcakes on sale, and the fashion show…well, I’ll let the pictures do the talking (which will be up very soon I promise!)

The amazing cupcakes Lora's good friend Sam made

As soon as I saw Lora I could tell she was nervous about pulling off the event. We hadn’t had a proper conversation for probably ten years and yet she put me at such ease, despite being anxious about the event. The young woman I now met was glamorous, bright and determined; a woman who didn’t have to do any of this but had chosen to do so.

The night was a massive success, raising around £4000 for Coppafeel, and of course the money was the ultimate goal of the event but that’s not what I will be taking away from that night.

What struck me were the old faces that showed up just to say hello and show their support. Schoolmates I’d not seen in twelve years, acquaintances who made the effort to come along just to give me a hug and say hello and old friends who came on their own to contribute.

An ex-boyfriend from my teens gave me a friendly hug and as I went to let go he held on for just that second longer, an unspoken way of saying he wished me well. He also won a raffle for a spa weekend, which he gave to my mum and I.

Then there was a bloke who introduced himself to tell me that his fiancée reads the blog. They often make the drive from Scotland down to Middlesbrough and been bickering in the car as couples are wont to do, and then his partner will read the blog aloud to him, they’ll put things in perspective and make up. When she joined us she explained that her mum had kept asking when they were going to set a date for their long-awaited wedding, and it was after reading the blog that they were inspired to seize the day. If I remember correctly I think they’ll be tying the knot in August next year!

Being a journalist I’ve met lots of different people with difficult stories over the course of my career. Some are heartbreaking. I remember the first ever report I went on for local TV was about an eleven year old boy who was dying of leukaemia yet who gave an hour of his week to help teach swimming at his local baths. I went off to report on that story and of course was touched by the tragedy, but even as I learned the nuances of his plight I was thinking professionally, ‘what shots do I need?’ ‘Which of his sound bites shall I use?’ ‘We need to get back to edit this in time for the programme.’ It sounds cold and dispassionate, but it’s the truth.

Now I’m the one who has the life threatening illness and I’m being enlightened as to what true kindness is and the depths of human empathy which we take for granted.

So yes, it was about the money and I know Coppafeel will use that cash to educate young women and to save lives, but for me the fashion show was about so much more. Oh and the clothes were rather good too…

Check out

http://kiwiboutique.myshopify.com/ top ladies fashion

http://bakerstailoring.com/index.php amazing men’s tailoring

http://www.akbars.co.uk/ the fantastic venue which also donated very generously

Two of the glamorous models on the catwalk

The End of the Rocky Road

Sit down and move your tea away from the keyboard; here’s the post I hoped I would never have to write…

On Wednesday Tom and I travelled to The Cotswolds to see a herbalist, exploring further alternative treatment to complement Professor Hope’s conventional medical approach.  I’ll skip the part about the picturesque surroundings, the 17th century limestone hotel and get to straight to the serious bit. From now on I will be giving up sweets, chocolate, cake and (I’m shaking as a I type this) Rocky Road.

Ever since I was a little girl I have loved chocolate raisins, a weakness I inherited from my grandma Betty who always had bags of them lying around the house – some of which I suspect to have been months out of date, hastily grabbed from a drawer to keep me quiet.  Then two years ago my innocent fix took a sinister turn onto a much harder confectionery; when I found Rocky Road I was hooked.  It was just like chocolate raisins but with extra good stuff; Rice Crispies, marshmallow and e numbers galore! Alas, our beautiful relationship has now tragically ended in Splitsville, and it’s the herbalist who will be cited as the third party in the divorce papers.

Contraband!

Gone too on his recommendation are alcohol, red meat, shellfish and dairy; in are more vegetables, brown rice, brazil nuts and rye bread. White meat and fish are still allowed as is the occasional tipple so it all feels very manageable, and as well as helping to tackle my diet he also offered further encouragement that I truly can influence my destiny.

As well as a sense of purpose, we also left carrying five, very suspect-looking bags of Chinese herbs. I was relieved we had driven rather than getting the train, as an arrest at Brixton tube would have been a dead cert. The process of soaking the herbs, boiling them up and straining them in our little kitchen is a chore, but the hardest part is definitely getting two cups a day down me. It’s not as bad as the green shit but certainly no Maccy D’s chocolate milkshake!

And for those of you wondering how the week went on the new drug, I’m happy to report that it went surprisingly well.  Aside from feeling a bit tired and my right eye still being a bit bleary I have to say that this is the best chemo I’ve been on. I don’t want to tempt fate as I have just had the second injection today, but so far so good. It helped that I had an amazing chemo nurse looking after me. She was like a proper old school matron; on the ball, authoritative yet kind – and she got a vein straight away!

The hair is coming out thick and fast now and there are a few bald patches appearing at the back, but I think that this is more from the whole brain radio rather than the chemo.  I’m desperate to be well this week as a friend from home has organised a charity fashion show for Coppafeel back in Middlesbrough.  Lora has put so much effort into it, as well as getting support from local businesses and friends, so I would love to be able to attend to show my appreciation for her amazing hard work. Hair or no hair, as long as I feel well I’ll be there.

So that’s me.  Cracking on with the treatment and mourning the end of a relationship I thought would be life long.  If you want to do something for me this week then I have one small request.  Treat yourself to a bit of Rocky Road for me, please…

Worse things happen in Milan

A plan has been devised; it’s time for more chemo. Hair falling out, eyebrows dropping off, eyelashes swept away-type chemo. Losing the hair on your head is invariably traumatic but for me it’s losing the eyebrows and eyelashes that really twists the knife. It annoys me to see some beautiful actress playing the cancer victim with a headscarf or bald head but with immaculate eye-brows and long luscious lashes. If you’re going to portray cancer then do it fucking properly; make her face look oddly featureless, her eyes small and undefined. Don’t sugar coat it because there’s nothing sweet about it at all.

And then of course there’s the wedding. What if it’s not back for the bloody wedding? You know, that one day a girl is supposed to look her best? The threat of having no lashes, no brows and maybe a buzz cut looms large amongst my worries. Maybe the title of my wedding blog will be Buzz Cut Bride. Sounds like a good comic strip character.

But of course I’ll do it. I’m happy to have a plan, as months off any medication has allowed the cancer to rampage unchecked. I picture it as some grubby squatter (no offence to any of you right-on Occupy lot) seeking out places of refuge to pitch a tent. Brain? Yes please. Lungs?  Nice and airy, ta. Liver? Bigger than expected but could be cosy with the right paraphernalia from Millets.

Then there’s a suspicious red mark on my chest that was worthy of a comment from Prof Hope today. It’s all a bloody worry and yet for some reason I can’t get stressed about it. I’m not sure why. Maybe because I’m not suffering any ill effects; I’m still here; functioning, getting around, living.

I’m meditating a lot which I’m convinced is helping.  I went to see an EFT therapist last week who was amazing. It’s strange to feel so calm in what should be a very traumatic time. For the moment I feel very accepting of what is to come.  I hope for minimal side effects and positive results. And I make no excuses to anyone when I say I truly believe I can beat this cancer.

Sometimes I feel that I have to justify myself for having faith in something miraculous, but why shouldn’t I have that as a goal? I have no idea why I am conditioned this way. I know I should be proud to believe in my ability to heal but instead I find myself worrying that people will think I’m in denial and kidding myself.

I have mixed feelings about the new drug.  It’s called Eribulin and has just been rejected by NICE.  I have managed to get it through a special cancer fund but have read of women who have been denied it, so there’s an element of guilt mixed in with my apparent good fortune. In the past I’ve reported about drugs getting rejected for work so it seems strange to be on the other side of the same news story.

According to the trials, Eribulin gives you an average of 13.1 months life expectancy compared to 10.6 on an already established drug. It’s not worth the funding, the people at NICE say. Of course, this is a highly controversial topic full of ethical questions and conundrums. All I know is that I’m thankful to be one of the lucky ones and I hope it does something really fucking nasty to the cancer. I’m talking bad-ass, evil, unmentionable shit.

And as all this goes on I feel so incredibly fortunate to have the most amazing man by my side. Tom makes me realise that there is a plan in there somewhere. To have met him and to be so in love and so at ease with someone is by far the greatest gift I have ever received. That, and friends who make me smile and surround me with so much support and kindness.

As I waited in the ward today with my friends Matt and Miffy, I was all geared up for the chemo when we were called into a room with the head nurse and pharmacist. Matt started rubbing my back and Miffy looked fearful. Here it comes, I thought to myself, another body blow. I quickly concluded that my blood results must have shown that my liver is in fact one giant tumour so there’s really no point in any chemo anyway.

“Because this drug has been rejected by NICE and you’re getting it on the special cancer fund everything needs to be completely signed-off, and unfortunately there is still a part of a form to be filled in. The person who can do that isn’t in until tomorrow so you’ll have to wait another day for treatment.”

Phew! We sighed with relief. “Worse things happen in Milan” Miffy remarked. Matt and I laughed; we had no idea what she was on about and neither did she but it seemed to sum up our thoughts perfectly as we mooched off into the grey, autumnal street.

no chemo today

Oi, move over.

I want to start this entry with a huge thank you for all the beautiful messages I have received from across the world. Although I am unable to reply to them all individually please know that I have read every single comment and the depth of feeling in each has touched me greatly.  Occasionally one may make me shed a tear but they have also given me a real push to get past this next hurdle. The offers for wedding photography, dresses, DJs, etc, have been beyond generous.  Once again, thank you. And not to brag (well, actually to totally show-off) on Thursday when the Daily Mail ran an article I’d written about my experience the blog got 26,000 hits!

But to bring things up to date I feel I should be tippy tappying on my keyboard with ‘Eye of the Tiger’ playing in my personal soundtrack right now!  I have completed three zapping sessions to the brain and so far so good; there have been few side-effects and the hair is still firmly on my head – in fact, the low-down from the radiotherapy nurses is that I might not even lose it all. This was mentioned in a cautious whisper in order not to raise my hopes too much but, at least for today, I have a full covering and I’m a happy bunny.

The process of the brain radiotherapy is pretty quick; you lie on you back and your head is strapped into a mask that was moulded to your face.  This is a bit uncomfortable but I clamp my yoga fingers together, close my eyes and visualise the cancer being blown to oblivion with every life-saving ray. It takes about ten minutes and then you’re free to go, back on the tube, looking like any other 28-year-old making their way across London.

As I sat on the tube yesterday a six-foot plus man came and plonked himself down next to me. There were other free seats but he stretched his legs out and nudged my elbow from the armrest as he spread his burly frame into a comfortable position. I looked up at him; he’d nonchalantly begun reading his mouldy-smelling book with no apparent awareness of having invaded my space.

Pre-cancer I might just have moved over with a ‘harrumph’ but nowadays I’m less likely to take this kind of shit. I straightened my back and gave him a firm elbow nudge to reassert my position. He looked at me and I stared right back keeping my arm where it rightfully belonged.  We sat like this all the way from Victoria to Brixton.  Sometimes you need to let the invader know you mean business even if it’s just a sharp assertive ‘fuck off’ nudge.

Hopefully radiotherapy will prove to be another nudge to the cancer, and the fact that that I’ve not been very ill has been a massive morale boost. I’m trying to play my part too; on the suggestion of an herbalist I’m juicing carrots and beetroot twice a day and am meditating to try and stay relaxed. These things can’t hurt so I may as well give them a go, and of course follow the advice of my inspiring medical team who are making this journey so much easier.

I’ve found that trying to concentrate on each day rather than the unknown future is also helping. I have to remind myself that none of us know what is round the corner and for the moment my body is stronger than the cancer; I am walking, talking, breathing and laughing. It makes no sense for the worry to become my main problem. The cancer is there but I am living with it and although at times it seems overwhelming I know I must ensure that it doesn’t entirely define me or take over who I am.

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