Update: The End

Hi all,

Sorry for my delay in getting this update out. As you by now most probably already know, I've been given the all clear. So this adventure of 15 months or so is finally over. And boy, what an adventure it has been. 

The more I think about it, the more I am convinced that I have been putting this final update off. Not only, because I hate goodbyes, but also because I am not sure I am feeling how I should be feeling or am expected by others to be feeling. If you get me? 

The thing is I have felt fine since about August. When I went with the girlies to France and realised all the food I had been accumulating with no regard to calorie consumption had crept up on me and I was chubby. It was a fine, healthy chubby, as I felt whatever had been inside me eating up all my energy had gone. I felt I was cancer free. But nonetheless, this was not a chubby that was welcome chez Emma. So I took control, and with some self discipline I lost around 5kgs and felt fantastic. I have put it all on over Christmas (thanks Fay!) but it was very worth it. So my headspace was pretty sure that, even without The Word of Prof Bower, I was on the mend. I was back at work full-time, back to nagging Simon full-time, everything was back to normal. So when Prof Bower, said those immortal words or words of my immortality (or not quite which I will explain later), it was wonderful. We cried, we laughed, we hugged, we kissed, we ran to Eight over Eight and we drank champagne. We were all very happy and very relieved but deep down, we were not surprised. It wasn't the happiest day of my life, because it wasn't. I can't explain it. I wish I could. I should have been. But perhaps because our worlds had been normal for so long that it just felt as though they weren't telling us anything we didn't already know.

To be honest, I am happy. Happy for Simon, my family and my friends who have been through all of this with me, how could I not be?, but I am also a little lost. For 15 months I have had this cluster of abnormal cells that have come into my life and turned it all around. It gave me get-out-of-jail free cards, it gave me focus and it gave me a reason to be strong and brave, whether it was conscious or not, and now as that cluster has gone, so has that purpose. Please don't get me wrong and feel that I am pining for my ill health or missing my daily sunbeds and monthly poison doses, because I am not. I am definitely not. But they do say this is the hardest time, and now I understand why. It's the storm after the lull after the storm. I could have omitted this paragraph from my update and you would have been none the wiser of my state of mind, but my updates have always been honest and this is all a part of the journey. A journey that you have taken with me, so I feel it would seem patronising to gloss over the harder times. I am fine and I will be fine and I know that. I just have a little more of an unexpected uphill journey before I reach there.

Alas, I don't want to leave this final update on such a sombre note, as that would be very un-Hollywood-like of me and I don't think I have finished off adventures in Australia Part II so here goes:

The last time I wrote, I had been living it large with Simon, his sister Caroline and her boyfriend Mark. We had a great time in Melbourne being wined and dined, and the good times carried onto Noosa, where we were treated like Kate and Wills, parties thrown in our honour, wined and dined in expensive restaurants, a day trip multi-million dollar boat (and driving it hey Captain Simon!) with dolphins thrown in for our pleasure, being ferried around in Limos, Champagne on tap, Gondola rides, 2 days on Fraser Island, Business Class return. It was absolutely magical. It truly was. It is a great credit to mum and dad, that they can live in a place for 4 months of the year and accumulate such a special network around them of such lovely and generous people. I know I am gushing but it was thanks to these people, Mark and Caz, Mum and Dad that we literally had the 3 weeks of a lifetime. Plus I have to keep them sweet if all this pampering is to continue now I am well! Pics to follow.

We then came back to London, work and life which was all sparkly and rose tinted and fell straight into a PET scan and the results. It was obviously a very anxious time for us. Coming from the daughter of a therapist, I talk about everything. I couldn't talk about this. I refused. It worked well as Simon didn't seem to want to either. Although my chat up there was about how I knew I was better, of course, I am a newbie in all this. I hoped and wanted and wished and knew I was. But I didn't know, know. What if I was wrong? What if I had to go through this all again? What if I had to go through Stem Cell Treatment? Then that would have to be a whole new plan of action for my fertility, for work, for Simon, for Mum and Dad and their travelling, for Amy and Sam, for my fitness, for my future plans, for everything. It wouldn't be over. It would be starting again. So you see why I didn't want to open up that conversation for discussion.

So Mum, Dad (who had flown in especially) and Simon went along to the hospital, and waited for our fate. And waited. And waited. When we saw Bower, ever the charmer, he picked up a magazine and started reading. That's fine, you may think, New Scientist or Cancer Treaters Digest, no flipping HELLO magazine. We paused holding our breaths waiting for him to lower his magazine and disclose my results. We waited. And waited. "Bower....Bower....BOWER....please do this like a bandaid- quick and painless" I begged. Lowering the magazine, "OOOOOooo I forgot to ask you about Australia. How was it?" I started to cry and he realised he was being a bit cruel. "Please Bower, I don't have the strength if this is going to be bad news". I wish I could paraphrase his next speech but I honestly have no idea what he said. Something about a place in France...then something about grading cancer....then something like "it's the same as it was last time". Okay. Fine. So what did this mean? We searched each other's faces, hoping someone had heard something the other had missed. Thankfully my super- chemo nurse Shauna was in the room and when we looked over to her for translation, our eyes meet with her teary ones, a big smile and nodding of the head. It was good news. Thank God for her otherwise this story would be a lot longer and very painful. The scan showed the same as the previous one, but as the time frame was longer, the news turned from inconclusive to good. I was in remission. A phrase I texted my friends, and basically everyone on my phone, which some had to look up to see whether this meant good or bad news before clicking back their replies. More champagne was had that day and I was taken for a yummy dinner with my beloved. I basically then didn't stop drinking for 10 days thanks to Christmas parties and celebratory bubbles wherever we went. My 10 day bender ended in a couple of migraines which I have never had before, but it was very worth it. I think my body had finally given up on me. Bloody hell! 15 months of poison, it survives and 10 days on alcohol it shuts down! Who'd have thunk it!

So now where do we stand? Basically wherever I want to now. Australia came with lots of conversations. Simon and I chatted about the future and what we wanted. Sorry to those who had placed bets on a Australian proposal but I said that I didn't want "no pity proposal". He had to wait until I was healthy as if he was going to marry me, he was in it for the long haul not just because I was going to croak it! I know what you are thinking, Simon is a lucky man! So our plans for extended travelling may be put on hold for a little while, but we are realised how important holidays are, for resting and recuperating and gaining that elusive perspective. So our plans are many. Lots of trips to Europe on our doorstep, perhaps a 3-weeker to India and of course a Christmas in Australia. Lots to look forward to. Also, after an introduction by a lovely family friend, there is a chance that "Taurus not Cancer" might be published. It's not going to be an easy ride but as my new year's resolution word is "PERSISTENCE", I hope by this time next year for you all to be reading this in book-form. Or Kindle. Either way. Okay it may take a little while longer than that, but my 3 monthly meetings with Bower, will also mean I turn in a couple of chapters into him and he adds his contribution in which will be the medical bit- why he did what he did and chose what he chose for me and my treatment. A different perspective and perhaps the USP (unique selling point). See I am already an author with this lingo.

So I think it is safe to say that this will be the last email, I will perhaps keep going on the blog but as it has taken 2 months for this one to be written, I wouldn't hold your breath. I don't need to say thanks to everyone for their love and support to me and my family because you should already know by now as I have said it enough times. It will be forever in my heart and I know in my family's as well.

So for the last time (you know I love the drama).

Lots of love and hugs and kisses

Em

XXXXX 

Update Melbourne

Date: 3 November 2011 06:40:41 GMT+10:00

Dear all,

As jetlag seems to have taken hold and I haven't written an update in a while, I thought I would bless you with another email.

So as you know from last time, despite my inconclusive test results, Simon and I agreed that our trip to Australia should go ahead anyway. Although we both would have loved to be cheersing our good health with a cold glass of sav blanc in the sunshine, it was still a great idea, still very much possible and still something we wanted. So we got our permissions from the powers that be, and did it anyway.

So to set the scene, I sit I here writing from Simon's sister's house in Flemington in Melbourne at 6am wrapped in blankets as my body is used to the 28 degree heat of queensland, rather than the 12 degrees less that Melbourne has to offer, when I step off that awfully long flight. It's not that its even that cold, especially compared to the temperature settling in London right now, but I guess its not what my body was expecting.

We have had a wonderful couple of days here and are due for a couple more, despite qantas' best efforts. The trip over was out of this world in parts and slap back into reality in others. So way out was bliss- we had ba lounge access so bubbles were called for. Coincidentally we were on the same plane as Cathy Payne, my big boss, who met me for bubbles while Simon explored the Virgin lounge with a colleague who coincidentally at heathrow at the same time but was venturing to another destination. Despite being offered every kind of meat and beer under the sun and free massages ie his heaven, we managed to get Simon back to the lounge long enough to realise our flight was on last call. Sprinting to the gate, our economy tickets were ripped up in front of us and replaced with 12e and 12f. We had been upgraded to business class!! The next 12 hours were a whirlwind of bubbles, flat beds and smoked salmon. Bliss. This however was not a chance encounter with heaven, but was a carefully planned plot by dad and his contacts and by the pilot brother of a good friend.

Landing in Singapore, we left Cathy to continue her leg to Sydney on BA while we were bound for Melbourne on Quantas. You know what's coming next! Queuing for transfers, we get a very weird message from dad which we don't understand, saying "You'll be fine... business class.... Don't get angry but cry a lot.... Play the cancer card...." All gobbledygook until we overheard a conversation between two fellow passengers. 30 minutes before we were due to land, qantas went on strike and we were to spend the next couple of days in singapore until told otherwise. I phoned Cathy to make sure she wasn't affected and within 20 minutes she had organised 2 seats on emirates leaving for melbourne 2 hours later. To add to it, our guardian angel also got us ba lounge access so we could spend our additional few hours having a shower and feeding up.

The next flight was a shock to the system after our cloud 9 journey prior but we were not complaining as at least our Australian adventure was continuing when so many others had had theirs cut short or delayed. Emirates were lovely and made sure our journey was as comfortable as possible including a flight attendant offering his vegetarian meal as in the palaver, we had forgotten to get me one.

So that brings us to melbourne. The past couple of days have been brilliant. Mark and Caroline have been very hospitable, taking us to the Melbourne cup races which was a blast. Simon and i agreed that we should share our winnings, which also means, luckily for me, that we share our losses so despite my continuous failures, Simon's successes meant we were up a tenner by the end of the day. Picture of caz, Simon and I attached. Although thankfully you can't see it, just before my flight, I thought it a good idea to use one of my multitude of vouchers and go for a fake tan. Having only had one at my sisters wedding 6 years prior, I am somewhat inept as to the workings of fake bake. So somewhere over Asia despite an obsessive compulsion to moisturise, my tan started to blotch. All over my legs. Not just in a "oh dear, look at the fake tan on that girl's legs" but "wow that girl has a horrific skin disorder, that looks painful." So immediately after this picture was taken, mark picked a lemon off the tree behind, heels were kicked off and I sprinted to the bathroom to scrub off the first four layers of skin. So i trotted off to the races with red rather than orange legs which was fine by me.  Those who saw me before i left will be very surprised by this as my tan looked so natural. See pic for proof!

So Melbourne has brought us many, many things. Trips down memory lane thanks to Mary Johnstone showing si and my childhood houses and school, including the house of a now- woman whom I used to bite as a child and used to be so scared of me she would cry when she saw me and scream to be put on the kitchen counter where my knashers couldn't get to her!, yummy home cooked food and lots of racing hats from the Browns and many a yummy restaurant and gorgeous accommodation thanks to caz and mark. I am meeting up with my "baby brother" who I used to bully into all my clothes when I was younger, for lunch today. I am getting the impression i was not a nice child!

So we depart this fair city on saturday for the sunshine coast to see the mcc side of the mccknights including my grandfather, cousin and aunt who have flown over especially to see si and I.

So as you will see medically I can offer you very little but to be honest, cancer is getting far to much publicity from me and I don't want to go too far and bore my captive audience. Now, where would that leave me? Alone with slightly orange skin in places, that's where!

I will keep you informed on my Aussie progress and hope that you are all fine and dandy.

Please let me know if you require anything Aus related and I will try my very hardest.

Lots of love and kisses
Em
Xxx

Sent from my iPhone

Update....1 year on

Hi all,

So here we are rounding on the one year anniversary of the beginning of this palarva. Wow! How time flies. So  a year ago yesterday 22^nd September I was admitted into Chel West and the rest is history. Well soon to be hopefully.

What is weird is that this would have passed me by (and it fact the date did yesterday) but even more so had it not also been for it coming up to the anniversary of Max’s death, as I was admitted on Wednesday and Max died on the Friday.  A lot has happened in a year and my boundaries have been pushed further than I thought was my breaking point but hey I am still here. Still here and kicking.

So my absence from your inbox is a good thing honestly. I have been doing nothing, nothing but working honestly. In fact, opening my diary I will confirm that fact. Oops had a week in France with my girlfriends too. I did that, but nothing else honestly. I have mostly been conserving my energy and strength for work and taking care of myself. I have given up alcohol, eating healthily and sleeping sloth-like amounts. I’ve begun to read myself a bit better and strangely could feel a change happening since my last scan. My metabolism has slowed, causing my fat jeans to become my skinny jeans and my skinny jeans to gather dust and collect moths at the bottom of my drawers. I put this down to the fact that the cancer has gone- at least it feels like it has. It was a energy sucking parasite which fed on me for god knows how long. In fact, I recall when I came back to my desk after my hiatus, I opened my drawers to find they were over spilling with every vitamin known to man; Beroccas, iron tablets, a, b, c, d and then some. I must have felt rubbish and run down and given hindsight, it’s hardly surprising. So, the food that was feeding the beast and the medication, is now just forming a thin layer of blubber where blubber need not be. Or to be fair, it could just be that I am getting closer to 30 years old! (vomit)

So after a week of being surrounded by my friends slim, brown bodies in France, enough was enough and I have taken the control back. I still look back fondly at those times not so long ago when macaroni cheese not such a dirty word, but now I get more pleasure out of seeing my toes than melted cheese! I am not taking myself too seriously though so don’t worry but it’s good to finally have some power over my body.

Another reason for my discipline is so I can look hot on the beach in Oz when I’m over in November albeit in the shade on the beach. We finally are doing it. After the inconclusive results came back 6 weeks ago, we ummed and ahhed about whether we should go as we really wanted to save it for when I was fully better so we could cheers that glass of Cloudy Bay (thanks in advance dad) with the knowledge that we were in a cancer free zone. I guess if this situation has taught us anything it’s to just bloody do it. We would be spending money anyway going away, so why not travel half way across the world and raid the parent’s fridge than spend our own money! Duh! That’s just common sense. Plus Si’s sister is morphing into a proper Aussie so we need to go and visit her so Si can bash her over the head with a rolled up newspaper when she says something too Australian!

So our dates are Friday 28^th October to Melbourne until Saturday 5^th November when we are Noosa bound. For our two year anniversary, Si not only received some really cool boardies but also a Lonely Planet guide for the East Coast of Australia. So the excitable puppy is now figuring out how we can fit in Fraser Island and the Whitsundays before we have to head back to the winter gloom on Sunday 20^th November. But at least then it’s almost Christmas time, which is always special in London town. I hope the family don’t mind getting home made gifts this Christmas as I do not plan to have any money left after Australia. Fine food, tasty wines and designer shopping costs you know. I would love to see my Aussie counterparts when I am in Oz or Noosa so please let me know if you are around and/or I will contact you separately. I might even hire someone to organise my diary.

I meet with Bower next week so I will have another date for another test for my return. 3000 emails and a PET scan awaiting me in late November- it might take a lot of will power (and perhaps a sedative) to get on that plane back to England. Saying that, we are quietly hopeful and I am being very vocal about my adversity to any further hideous, invasive treatment. The stem cell transplant will be like killing an ant with a bazooka which, as far as I am concerned, is overkill. But my mind may need to be changed if circumstances change. But we have Australia to deal with before all that messy, ugly stuff. We are getting good a pushing the clouds away and creating sunny days, as when there is not much you can do, when there is not much you can do.

So that is me and my news. It’s been a year and what a year it’s been.

Thanks to you all for your love and support and emails and presents and messages and hats and wigs and cards and flowers and hugs and kisses.

I definitely could not have done this without you. Well I could but no one would be reading my emails!

Lots of love and hugs and kisses

Em

xxx 

FW: Update Again

(sent 12th August 2011)

Hi girls and boys, 

Just a very quick update as I'm knackered but you have all been so lovely with your texts and emails, I definitely can't leave you hanging so here's the update. 

To cut a long story short there's no news. There is still a small bit of activity but it is not clear whether it's good activity or bad. To explain, when you have a pet scan they pump you through with radioactive glucose, which as you will remember from previous updates, cancer loves glucose so sucks it up and the energy it generates glows under the scan. 

So I glowed. This is either because there is a small amount of the cancer left which greedily eats up the glucose or either it is just scar tissue that is trying to heal and using energy to do so. Either option is equally viable and cannot yet be confirmed which leaves me now in limbo. 

This was to be expected as it is said the radiotherapy can take months to heal and we took the first possible window to have the scan- 3 months. So new plan of attack is to revisit this in 3 months for another scan. Pause and replay. 

I'm actually fine about it, just lacking in humour as I am hungover and tired. So think of something funny and pretend I said it. This situation is what it is and although it is a bit annoying to be kept waiting again, I'm happy, healthy and getting on with life! What more could you ask for. 

I'll update you further when my sense of humour returns and speak more about the Bower meeting. (I need to be nice now as I finally gave him the blog address- hi Mark!!!)

Speak soon

Hugs and kisses
Em
Xxx

Sent from my iPhone

Update Again

(Sent 4th August 2011)

Hello! Did you miss me?

I predict this message will be a two parter as although I am writing this in bed still very much on my sugar high from my mass pick n mix selection at the cinema tonight (Tuesday), I'm hoping sleep will take me soon as I fear this won't be a good night for insomnia. Alas tomorrow is day of tests (or more correctly test) aka Emma vs the tumour verdict round two. 

I have successfully succeeded in project normality for the past couple of months since my birthday and last blog, apart from the occasional flare of pleurisy and even more sporadic hospital check ups, life with me has been relatively drama free. I have even mastered the skill of "head in sand" itis as I managed to distract myself long enough to forget about the tests until a week ago. Saying that, it was only recently mastered and it was primarily thanks to prof bower the great. 

Long story short, I was conversing with a lady whom I met recently and I was telling her of my past health hiccup and the future potential plans for me and she asked me the simple question "what do you want to do?". Simple enough yes but not necessarily one that had been ever asked to me when my answer was being taken into consideration. I pondered. I realised that the path I wanted to follow was not the one I had been put on medically. The stem cell transplant was my next stop if my condition was still hanging around and more than anything, I didn't want it. It would mean a month or so in solitary confinement while my body basically regenerated a new immune system. Baby McCaugheys would also be out of the question- my babies anyway as I could always find an egg donor. Not necessarily the things you want or need to think about until you have to. So my gut instinct was hell no to the transplant. So I looked into going down the natural route. I didn't venture far but enough to realise that there is a lot out there. Then came my monthly meet with bower. 

I must've caught him on a good day or a less of a bad day or he must have sensed my trepidation regarding the fast looming tests, either way his response to my newfound distain of his plan of the stem cell transplant, was complete agreement. With a wave of his hand, the notion was removed from not only the table but from the conversation and all subsequent discussions. "You'll be fine. You'll be fine. You'll be overpopulating the earth with your babies in no time". That positivity coming from bower is grounds for a national holiday in itself. So whatever his reasoning, his method worked and the last few weeks have flown by. And if it wasn't for that damn pick n mix, tonight would have flown by too!

So that was Tuesday and today is Thursday. My plans to scribe from my hospital bed yesterday went capluey as with the radioactive stuff they inject into me, in order for it to get sucked up by the tumour I needed to lie down for 90 mins and anything "active" like typing or playing iPhone games can attract all the radioactive stuff to the active muscles, highlighing them on the scan rather than the bad stuff. You get me? See I'm 3/4 of the way to becoming a doctor!

So yesterday went fine- all very uneventful once you have done them a couple of times. I've learnt all the tricks now- get the cannula taken out as quickly as possible and always ask for music when you're in the scan (30 mins of silence takes forever but 10 3 minute songs fly by - even when it's Pixie Lott's album -what a bunch of drivel but thanks anyway Pixie!!. So m&s filled my post scan starvation as you have to not eat or drink anything bar water from midnight which gets trickier when you are up most of the night! The day was topped off by an 8/8 meal with mum and I tipsily agreed to a new running partner for next years marathon. That's the new focus I guess- plus as my friend put it, I'll probably get on telly as I've got one of those great sob stories! 5 minutes of fame! Woo hoo!

So now the other stuff in a nutshell- working 4 days a week at work thanks to my wonderful boss who has been very supportive. Without going over old ground as I'm not sure what you know- went to back to work all guns blazing then slowly the adrenaline and excitement wore off and I was just really tired. The tipping point was on my birthday when I was sitting at my desk and as everyone came with cake to sing happy birthday, I burst into tears and sobbed disgustingly into the cake! I was completely overtired. So it was deemed best for everyone involved if I cut my hours and worked up to a full week. So 3 days have become 4 days and will soon go back to a full week again. Can't wait  but honestly it'll be good to be back to normal. 

Speaking of normal, my new hair is definitely not my natural shade. I have gone bleeched blonde. Why not I thought? The cancer (or chemo more correctly) took my hair so I am taking back control by purposely keeping it short and having fun. Attached is a photo for your pleasure but please don't judge too much- it was at the work summer party so I am not at my most sober.

I think that is all- Simon and I are off to Brussels this weekend and then in a couple of weeks 5 girlfriends and I are off to our house in the South of France for a week which will be lovely. Well hopefully. We are doing a Come Dine With Me style challenge each night so fingers crossed I avoid getting salmonella! Just kidding. Honestly don't spit in my food.

Results are due on August 12th so I promise to update you again. 

Speak soon.

Lots of hugs and kisses,
Em
XX

Sent from my iPhone

Emma's Pity/ Birthday/ End of Treatment and End of the World Party

On Friday 20th May, hundreds (felt like it) of people descended on Clapham Junction for a night of chaos and debauchery. The only rule for this evening was to wear a wig. I figured as I had to wear one for the last couple of months, then my friends should for one night! And boy, did they deliver!

Thanks to all who came. I couldn't have celebrated without you. Well, I could have. But that would have been very sad and I wouldn't have all these delightful pictures. (Send me more if you have them)