Happy New Year!

As I type this, there's around 4 hrs to midnight and 2011. Needless to say, I will be glad to see the back of 2010 which quite frankly, has been mostly rubbish for Mat and I - predominantly because of this vile disease but also because our best laid plans were derailed. However, as 2011 approaches it brings with it a new year, a fresh new start and new plans for us.
 
I had a weekly review at the hospital yesterday. Everything is going ok. My blood counts are within the 'normal' range although on the low side and I have been told to take it easy and let my body do its thing. Although I look well, I'm still not 100% health wise and won't be for a few weeks yet but I am getting there. I still get fatigued easily and have to take naps as and when needed. What with my baldy head and tantrums - it is abit like having a toddler around the house!?!

It was also the first time I had travelled to the hospital on my own since November. I got a lift to and from the station but travelled on public transport to get to UCLH. I wanted to try and get back to normality as and when I can.  Given my suppressed immunity, I was more conscious of not being near anyone who could infect me with some form of cold/flu virus and set my recovery back. It really is amazing how revolting some people can be! No wonder there is currently a flu epidemic given the number of people I saw coughing and sneezing without covering their mouths, using tissues etc. Sooo disgusting! I managed to dodge any serious offenders but as I mentioned in a previous post, I am feeling a little Howard Hughes like!

Aside from dodging bacteria, much of this week of Sundays has been spent resting and catching up on film and television. I absolutely loved "Toast" yesterday and the three episodes of "Upstairs Downstairs" shown.  I never got into "Downton Abbey" when it was first on so it looks like that box set is a-calling for me to catch up on it as I enjoyed "Upstairs Downstairs" so much.  I have just about recovered from the drama of Stacey Slater leaving Albert Square and from what I have read in the papers, there's more trauma coming up this weekend! Finally saw "The Social Network" and although I enjoyed the story and some of the performances, thought it a little slow at times. Also saw "Red" with Bruce Willis which I thought was terrible but very much enjoyed and was moved by "Everybody's Fine" with Robert de Niro although it could have been shortened by half an hour. 

Anyway, enough of being Barry Norman, my New Year's Eve dinner is beckoning and our dining room is far so best go ;-)
Thank you for your friendship, support and best wishes. It is all very much appreciated and have made an otherwise difficult year bearable even enjoyable at times. Wishing you all a very happy. healthy and prosperous 2011!

As a final note, I thought I would share with you a tweet from Arianna Huffington which I thought quite fitting:

"I asked Chilean miner Barrios what his New Year's resolution is: "I don't make New Year's resolutions anymore. I take life 1 hour at a time."

Happy New Year everyone!

Home for the holidays.....Merry Christmas!

Merry Christmas 2010

As I type this late Christmas Eve / early Christmas Day, I am conscious that I need to be swift as I may end up disturbing Santa, Rudolph or an elf or something so I best be quick :-)

I am finally home after two and a half weeks in hospital.  I slept in my own bed, under my big fat duvet and soft pillows for the first time in weeks last night.  And it felt like sleeping in a cloud.  I even had an angel sleeping next to me.  I had the best night sleep in absolute ages.  It was lovely.  Simple pleasures indeed!

I wasn't quite sure whether or not the hospital was going to release me in time for Christmas Day at first.  I'm not sentimental about Christmas at all but the thought of spending Christmas Day in hospital hooked up to an IV pole and eating yet more hospital food was just too depressing to contemplate.  I know it would have been fun celebrating with the medical team but I was really keen on going home.  I had had enough already.  Been there, seen it, done it, bought the T-shirt AND taken the pills. The novelty had well and truly worn off. 

And yet there they were, taking swabs up my nose and down my throat to test whether or not I had a virus. I happened to mention that I didn't feel quite right and was a bit sniffly. Given my lowered immunity they had to decide whether it would be ok to send me home or keep me in isolation in critical care. This was so I didn't infect other patients and they could keep an eye on me just in case it was a particularly nasty virus such as the swine flu one.  Where would you prefer to go Vanessa?  Oooh, I don't know, how about another week in critical care? I hear it's a real party palace down there, a bit like the Playboy mansion so yeah, bring it on. NOT. 

A decision couldn't be made until the test results came through so I was left in limbo for much of Wednesday. When I was finally told I could leave because test results were negative I was delighted. If I could have skipped out of the hospital I would have done so but as it was, it was a slow walk to the lift and into a cab.  Mat and I were laden with all the stuff you kind folks had sent me so we looked a bit like refugees clutching our boxes of worldly belongings. A support worker was despatched to help and she fortunately brought a trolley with her.  I only came in with a suitcase! 

It was also the first time I had ventured out in public wearing a scarf around my head and I have to say, I was a little self-conscious but I got over it fairly quickly.  It's only a scarf after all.
As has already been mentioned, I now have a buzz cut - a No 4 in the end.  What Mat may have forgotten to say was that he had just come back from his Christmas work party when we both went for the let's shave Vanessa's head idea and that while he was doing the deed he was acting like Vidal Sassoon throughout!  Honestly, you should have seen it.  Not only were the clippers involved but a pair of scissors too - "to neaten the edges".  Riiiight.  Although at the time we were giggling and laughing like a pair of naughty schoolgirls let loose with cutting equipment, when I looked in the mirror at my decidedly masculine appearance I just burst into tears.  I think it was the shock and the sudden realisation that IT had finally happened - my hair was no more.  Ridiculous really as it is only hair and it will grow back but there you go, I'm only human and I loved my hair. 

The photo below is the clearest photo I have to show you of the buzz cut.  Yes, I know I could have tilted my head slightly more angled to show off my cheek bones and to minimise the double chin, but I was in shock OK?! Although this photo was taken only 2 days ago, most of the hair you can see has now gone.  All I have left are wispy Gollum bits on my head so come the new year I think I will end up with a proper slap head!  I would take a photo and show you all but I am waiting till my scalp calms down a bit - it's not looking very pretty at the moment (scaley, dry and a bit sore) and I don't want to put you off your sprouts! Plus, oh my goodness, just how cold does your head get?! I have been wearing the beanie hat Fi's mum knitted me to bed as it's so toasty warm and good at catching falling out hair - thanks Flo :-)

GI Vanessa at your service - Sir!

Which reminds me, thank you very much for organising the Nintendo DS gift Fi! I'm hugely grateful. I know you were instrumental in putting this together and when I read all the names involved in the card I was deeply moved by all your generosity - you know who you are and you all clearly know me very well!Brain Trainer indeed... My maths will definitely improve now :-)

Anyway, I best go.  I can hear Rudolph outside. Even though I am no longer in hospital I still have weeks/months of rehab to go through. In fact, I'm back in hospital for the day next week to make sure that things are ok.  I get fatigued very easily so apologies if I fall asleep on you and refuse party invites - I am just not well enough. The no sick people near me rule still stands I'm afraid.  My immunity is still building itself up.  But at least I get to recuperate in the comfort of my own home.

Obviously, given that we were somewhat distracted this year, Christmas is very low key in our household with the lack of decorations and presents but no matter.  I'm just happy to be well enough to enjoy this Christmas and hopefully loads more besides!  Remember, it's only for one day. Don't get stressed over the dinner - it's only a glorified roast dinner after all.  People will understand if the veg are slightly over-cooked or the turkey is taking longer than expected.  If they don't, they can go and stuff themselves and don't invite them next year!  Send that text, type up that email or make that phone call - let people know you care.  Merry Christmas everyone - hope you all have a lovely day, whatever you are doing.

The Great Escape.... well, it is Christmas

Mat here.

Good news all, Vanessa is now out of hospital!  The docs were sufficiently pleased with her progress and her latest set of blood tests to let her leave.  She's still pretty weak, and still somewhat prone to infection, so no raving to be done over the festive period.  However, it'll be great to get her (and myself) home again. 

We're staying the night at my dad's as a half way house while I sort out transport home for her tomorrow, so nearly fully home. 

The only other major news is Vanessa now has a buzz cut.  Her hair continues to fall out steadily, so she decided a couple of nights ago to chop it all short to reduce the change / piles of hair.  The scariest part is she now looks very much like Kevin, her brother! (sorry Kev)

I'm sure Vanessa will post again tomorrow, so I'll leave it there for tonight. 

Mat.

When the going gets tough, the tough get going

Vanessa demonstrating burka chic badly

I absolutely love the above Billy Ocean 80's classic! It's such a cheese fest and depending on the beverage imbibed, I have been known to indulge in a little bit of Michael Douglas/Kathleen Turner/Danny De Vito white tuxedo dancing just like in the video should this song be playing! Sad or what?! It was also one of the songs being played on the radio while I was receiving my new stem cells last week. And what I have been telling myself every day this past week whilst I have been going through possibly one of the most physically demanding experiences of my life so far. And not in a good way either like running a marathon or swimming the Channel.

Although I still feel weak, today has been the first time I have been able to type in a while - thank you Mat for updating the blog in my absence. I had been told about the chemo side effects, read up about it all and had steeled myself for the worst but to put it bluntly hadn't quite realised that it would be all so very cr*ppy.  My body felt like it was eating itself from the inside while every orifice oozed/leaked/secreted various substances and during which my scalp felt like it was on fire. In addition, I was running a high temperature, my mouth full of sores, felt like cardboard and my tastebuds shot to pieces. The medical team were superb in administering the various pills and potions to make me feel better and I can't praise them all enough for not only trying to make me feel physically better but in also lifting my spirits up.
I was also lucky enough to receive an Indian head massage Friday evening which made me feel a little alive again. UCLH are quite forward thinking in allowing alternative therapies to be practised on patients should they wish too - so long as the practioners are not preaching chakras, mantras etc.  It's all a form of relaxation technique and not medical and scientific in any way. Regardless of what you believe, as I have mentioned, the aromatherapist made me feel like me again. Hopefully, the reflexology session tomorrow will make me feel even better, then there will be trouble!

Needless to say, during all this time there have been plenty of tears and self-pity on my part. It's no fun being incarcerated in a hospital room watching the world go about its way especially at this time of year.  Everybody seems to be having sooo much fun. My self-pity doesn't last long and I figure that it's healthier to succumb to it, so long as the maudlin doesn't take over. I know there are people much worse off than me out there but it's my party and I'll cry if I want to :-(

In addition, I have felt weak and vulnerable and horribly exposed at times. For example, I had to have an x-ray on my chest which involved travelling from the 15th floor to the basement and the stupid g*t porter taking me decided to use the public lifts rather than the designated patient ones. I only realised when the lift kept stopping on floors and people were entering coughing and spluttering away without a care in the world or other people. Because of my lack of immunity I was made to wear a mask but it still made me feel scared about catching a bug of some description and setting my treatment back. I did try and tell the porter but his English was limited and I don't think he had a clue as to what I was saying and people were just staring at me. It was easier to shut up and get on with it - I didn't really want to draw any more attention to myself as I sat there mad-eyed, greasy-haired and wearing a mask and dressing gown - a beautiful sight to behold. I did make a complaint but I don't know if anything came of it. The porter taking me back was much more professional and understanding and quite frankly I am just putting the whole thing down to experience. I have gained more from this hospital than not. As an aside and speaking of bugs, I kinda now know how Howard Hughes felt although I am rather hoping I won't end up like him!

Just in case you were wondering, my hair is slowly but surely falling out. I already have bald patches. Mat was on stand-by to give me a GI Jane style hair-cut with the clippers but because of my sore scalp we have postponed this. Might just go for a No 3 all over as all this hair falling out is a bit messy. Everytime I wash my hair the plug hole looks like there is a small black rodent asleep in it! Really glad that I did cut my hair when I did - it's bad enough dealing with it all now but I can only imagine the horror of having to deal with handfuls of long hair. I don't think I am going to make an attractive baldy either so the sooner it grows back the better. Eyebrows and eyelashes are still in place and hopefully will remain so.

Throughout all this, thank you very much for all your comments, text messages, emails, voicemails and phone calls when I have been able to take them. They have really cheered me up no end and have lifted my spirits in more ways than you will ever know. I will try and get back to as many of you as possible but please do bear with me if I don't get a chance to. It can get overwhelming at times - sorry. A special thanks to Amy for the care package! Wow! All various goodies have and should keep me amused long into my recuperation.

In other news, given that I have just been lying here semi-comatose watching daytime TV for the last few days, I now know how to make tasty sausage rolls, interesting canapes, a chestnut roast for veggies, a ruffle for my wrist, that chicken is the 5th favourite Christmas food and how to use hops as a Christmas garland. Check out just how interesting I have become!? Loved the Apprentice last night and so glad Stella won - I picked her right at the start. I know a winner when I see one.

Feeling a little tired so will sign off for now. Dinner has just arrived also so need to eat that to keep my strength up.  With a bit of luck I should be home in time for Christmas Day to continue my recuperation at home. The doctors seem to be making all the right noises. Hope so, I don't think I could stand any more hospital food and staring at these four walls all day - fingers and toes crossed!  I really miss our house! 
　
　
　

Nice apron!

Mat again,

A short entry tonight as both Vanessa and I are pretty tired.  She's still doing OK, although the chemo from a week ago is definately kicking in now, and the symptoms are becoming worse.  However, they are nothing that we aren't expecting.

Vanessa is now neutropenic, which means her white blood cell counts are very low.  The chemo has killed off her old stem cells (the damage is done before the transplant), so she is no longer making blood until the new harvested cells take residence in her bone marrow and start production again.  This low count means she's very susceptible to infection now, and special precautions need to be taken.

Her diet has been restricted (not that she's got much appetite) to cut out anything that could lead to infection (fruit, soft cheeses etc).  Also anyone entering the room must be healthy, free from colds etc, scrubbed hands and donned in a delightful apron, glove and mask combo as modeled by Kira below.  Ok, the masks are optional, but better safe than sorry.  She's still taking visitors, so she isn't in full isolation. 

We're expecting her to remain neutropenic for around a week, although it maybe less as she was given back more than the normal number of stem cells (as she produced so many).  Hopefully this should speed things along and aid her recovery. 

Hi all,

Mat here again, as Vanessa is feeling a bit too weak to be blogging over the last few days.  She's doing okay, but suffering quite a bit from fatigue and nausea.  This is as expected, as the chemo starts to kick in and kill off not only the cancerous cells, but other fast growing cells in the stomach and gutts as well.  We've still got a fair way to go, as her white blood cell counts are decreasing but haven't bottomed out yet.  They are expecting her to become neutropenic by Tuesday / Wednesday.  But for the moment, she's still able to have visitors without the need for special precautions.  But, if you do want to visit, please text or call first. 

While the drugs have played havoc with her appetite, not aided by extremely bland hospital food, it hasnt quashed it all together.  On my way over to visit yesterday, I received a text asking me to get her a Maccy D's cheesebuger and milkshake.  Classy!  Fortunately the milkshakes are actually encouraged by the nutritionalists here, as they are a great way of getting a lot of energy rich food into people with little appetite.  Any excuse if you ask me!  As for the cheeseburger, apparently, that was just for the gherkin.  Not for the nutritional value, just for the taste. 

In other news, we've discovered what the pinkish purpley lights are that we can see from Vanessa's room.  Kira and Sean came over yesterday to visit and brought a pair of binoculars.  Best guesses from the Camden masses had been Koko's, but my money was on the Roundhouse.  The binoculars revealed differently however.  Turned out to be just a branch of Foxton's! Ah well, there goes the mystery.  I think I prefered it when I didn't know. 

Vanessa was also delighted that one Mr Matt Cardle won X Factor.  'spose its better than a scouser who seemed to have had fully body botox and was unable to move.  anyhows....

Vanessa thanks everyone for the kind messages.  I know they mean a lot to her.  She'll respond as and when she's feeling up to it.

Day Zero

By Mat on Vanessa's behalf.

Like many a Hollywood blockbuster, 'Stem Cell Day 2 - The Return of the Stem Cell' was in  some ways a bit of a dissappointment.  I'm not sure what I was expecting... just perhaps something more for something so utterly important?  Sure, the cast was there, the glamourous leading lady, fine supporting roles from the nurses, and even a cameo from myself (I was working from the hospital room yesterday to keep Vanessa company).  The plot seemed good too from the blurb on the poster:  It's a race against time as cryogenically frozen stem cells are returned to their host. 

It started off quite interesting, with strange bits of equipment appearing outside of the hospital room, and nurses making things ready.  Around lunchtime, one of the said bits of shiney equipment was wheeled in and filled with water,  This turned out to be nothing more exciting than a warm water bath used to defrost the frozen stem cells.  This was left to heat up and stabilise for half an hour while we awaited the arrival of the cells from the lab.  They turned up in a giant polystyrene thermos flask full of liquid nitrogen.  This I guess could be alikened to the major action scene you see in the trailers.  The lid was opened to clouds of chilled smoke.  The nurse donned huge gaunlets and a pair of tongs, and carefully extracted a bubble wrapped pouch that crackled and steamed as it met the warm air of the room.  After the labels were carefully checked against the notes in Vanessa's file, the package was unwrapped and slid quietly into the water bath.  And that was about the extent of the excitement.  You'd seen all the good bits in the trailer. 

5 minutes later a pinkish bag was hooked up to Vanessa's IV line, and the cells slowly dripped back into her arm. 

The oddest thing about the whole proceedure was the smell.  Just like a trip to the cinema, where the smell of slightly stale popcorn overwhelms the venue, after around five minutes of Vanessa being hooked up to the drip a strange smell began to arise.  Not popcorn, but rather sweetcorn!  Even stranger was this scent was coming directly from Vanessa.  The preservative used to store the cells is purged from the body by the lungs and through the skin... and it smells like a sort of artificial sweetcorn.  By late afternoon the smell was quite astonishing.  As Vanessa said, 'Its like having the Jolly Green Giant sharing your room'.  Very strange.  I'm just hoping it doesnt put either Vanessa or myself off real sweetcorn all together, as we both are big fans. 

Despite the proceedure being not a lot more complicated than defrosting something you'd be having for dinner tonight, it was about as critical to Vanessa as you can get.  Without that inoccuous bag of pink fluid, the chemo taken the day before would leave Vanessa completely defenceless to infection, and unable to make any new blood cells.  Ever.  Not a happy thought. 

Fortunately, the event was uneventful.  No dramas, no emergency buzzers, no issues at all.  I would have been annoyed if I'd paid to see it at the cinema, but as it was, I'm very grateful it was dull.  Duller the better in this case.  :)

Yesterday was Day Zero.  The first day of a new start.  Vanessa now has two birthdays.  Like the Queen she is. 

Mat. 

My chemical romance

It's amazing how an innocent looking bag such as the one above can provoke so much thought and emotion in people - you can count me among them. Hate, disgust, fright, love, apprehension, anticipation but most of all hope.

I had built myself up to the point of expecting the second coming walking into my room but as it was, when one of my nurses walked in carrying one of the IT girls of chemo (Melphalan), it wasn't so much gold, frankincense and myrrh - more like oh, that's intense and grrrr! I had taken on board all the hideous side effects and signed the relevant consent forms but it was all a bit of an anti-climax.

I was given it through my sexy new appendage PICC and told I had around 12 hours till the first side effects would start showing themselves.  It is all a bit undignified what they are so I won't go into detail here.  Apparently, it gets REALLY fun when I get my stem-cells back tomorrow.  It will be a whole new me so brace yourselves!  The chemo's job is to strip me off of all the bad cancer cells (fingers crossed) and my all singing all dancing new stem cells are told to go forth and multiply! Unfortunately the chemo not only destroys bad cells but good cells too hence feeling grim and a little splat. 

In relation to this, I will be known as "neutropenic" for a period of time. This where I am at greater risk of infections from others and from bacteria or fungus in foods. Here's the science;- the white blood cells (neutrophils) that would usually fight food poisoning bacteria are at a low level. The gut lining acts as a barrier between bacteria and the bloodstream.  Chemo and radiotherapy damage the gut lining making it easier for any bacteria to cross the barrier.  I, therefore, had a meeting with a rather lovely dietician who advised me on what foods I can eat. She might be single boys, I'll let you know. 

In a nutshell I will be eating in a world of bland for god knows how long
:-(   How depressing. 
I love food.  Eating is such an enjoyable experiencce and I adore the whole social aspect that goes with it. Whether it is eating in a Michelin star restaurant or the local curry house, it is such a pleasure, obviously if the food is good! It is one of many reasons I love France and the whole French lifestyle thing that revolves around their cuisine.  Ah well, never mind. Like with many things to do with this illness, it's just another thing to put on hold. Jacket potato anyone? 

Have spent most of today trying to entertain myself.  I have been making friends with the nurses who are fab.  Most of today has also seen me driving myself mad trying to work out where the bright fuchsia pink lights are coming from towards north London! I need to know as it is ruining my vista when I look out of my window when it gets dark!

Mat's spatial awareness (and Googlemaps) enabled him to confirm that my room is NW facing so I have Wembley stadium, Primrose Hill and Hampstead to look at.  And these bright fuchsia pink lights which are towards Camden or in Camden itself. I think it might be coming from the Roundhouse and I actually tried ringing them to ask but there was no answer. Yep, this is how sad I have become!  Where are these lights coming from?! Are they Christmas lights? For a festival? It's driving me insane, more out of curiousity than anything else.  Please put me out of my misery if you know, either in the comments section or in an email. I will think of a prize to whoever puts me out of my madness - picture attached. It's rubbish because my camera phone is not great but you can at least see the pink lights in the middle, yes?!? Kira and Sean, I apologise for wittering on about this to you earlier. You poor things having to endure the ramblings of a mad woman! 

I brought myself back to reality by watching an excellent documentary on pandas! Did you see it? Cool or what? You can't really go wrong with David Attenborough and pandas. And they are such brilliant animals.
A lot stupid but cute all the same. I can think of people I know like that! 

Anyways, my 12 hours is nearly upon us so I will either turn into Cinderella at midnight or meet the Grinch. Well done Ben on being the Sami Nasri of this evening's football team and thank you Sam for the offer of seeing Arsenal. I'm afraid, like Alan Shearer my football days are behind me for now.  Although as you mentioned, we will have the lack of hair in common soon. Me and Alan Shearer that is, not you!

Being a little PICC - y

Room with a view

Having ice skated our way here, most of today has been spent with "general admin" in preparation for the medical hard stuff.

I got a little tour of my room involving explanations of the various bits of equipment on hand - my favourite one being the touch on/off lamp where you just tap it on the side to switch it on and off. How cool?! Like I said, it doesn't take much to impress me! There is also a small fridge here although unfortunately I don't think it will be seeing much action in terms of chilled wine while I am here. As you can also see from the above pic the view from my room was a little foggy today!

I also had the pleasure of having a PICC line fitted. PICC stands for "peripherally inserted central catheter" which in simple terms is a fine tube pushed into and inserted  into one of the large veins in my right arm (just above the bend in my elbow) from where it is pushed up my arm, pass the front of my shoulder into the vena cava - one of the veins from the heart. Not really sure how long this is going to stay inside me but it makes it easier for bloods to be taken and drugs to be administered rather than having to have a canulla each time which can be a bit painful and at the rate I am going, I won't have any veins in my arm left!  The PICC wasn't painful at all, just a little bit sore but I think this is more from the protective bandage. 

During the fitment, I had a right mouthy nurse in the room going on about how she didn't think ultrasound really helps with fitting a line blah, blah, yak, yak, blah.  Not what I want to be hearing love while the doctor is just about to stick a piece of piping inside me!  To his credit, the good doctor handled her very well and having made a little bit of a complaint after about this, I think it was acknowledged that this was not the first time she had done this. Silly cow.  

This evening has just been a bit of a waiting game. When I got the go ahead to leave the building, Mat and I walked down to all the expensive furniture stores down Tottenham Court Road and drooled at all the ridiculously priced furniture on our way to the massive Paperchase store. I love Paperchase especially this branch! I could spend hours in there drooling at all the stationery and bright shiny things. As it was, I ended up getting some Christmas cards as my crafty plans of making them all this year fell by the wayside as I felt too unwell to do so.  I did debate about bringing all my bits and pieces to hospital but figured that from a clinical perspective, glitter is not really a good idea!

Also, I'm not usually a Corrie fan but got a little bit excited watching Coronation Street and the mother of all tram crashes! Woah, did you see it?! Money was clearly spent on that baby. It looked like a Hollywood blockbuster! At least I am going to be in all week to watch it pan out.

Anyway, feeling a little tired now and need to be strong for the nuclear blast chemo tomorrow so over and out for now.

Photo courtesy of vanessavanillaflavour

Harry Potter and the deathly traffic

Harry and Hagrid made a dash to Waitrose as soon as they were told of 
new stock of the Heston Blumenthal orange Christmas pudding


I think the whole of Surrey decided to come out earlier today!Having endured a few days being cooped up indoors because of the snow, the first sight of sunshine and a long awaited thaw resulted in total gridlock in the Mole Valley area.  I had never seen so many cars!  Lots of 4x4s being driven by yummy mummy types struggling in the ice but this is Surrey, don't you know, and I will take my time reversing even though I am clearly having problems controlling this car....Wanting to entertain myself stuck in traffic, I observed the facility of a push button being used to shut the boot of a 4x4 Audi rather than having to use your arm to do so. How cool is that?!? Yes, it doesn't take much to impress me!

We were pretty lucky in that we were only travelling 2 miles to Epsom but I had never seen so many cars and people out and about round here.  I know it didn't help that today is a Saturday three weeks before Christmas but I have never seen all the shops so busy.  I thought there was a recession on?  I only wanted a few bits and pieces for going into hospital! 

It was mayhem in Sainsbury's where trying to find parking space was a little crazy compared to how it usually is. I think people were also still a little cabin feverish as I had a woman get a little irate with me as I had the audacity to tell her to join the back of the queue as she had pushed in whilst we were waiting to pay for our shopping.  Shame. The "Fast Track" line wasn't being very Fast Track and no one else was going to say anything to her even though everyone else all thought it!  Oh well, never going to see her again!  You can take the girl out of Essex .....

After all the palaver, Mat and I decided to escape the madness by jumping into the cinema to watch the new Harry Potter film. We have been watching the Harry Potter films since the very first one and the only time we have missed the first showing was with this current one as I was too unwell to go and watch it at the first midnight showing.  Yes we're a couple of saddoes but come on, its Harry Potter!?!  It's got to be done!  Thought this latest one was really well made with great acting, good pacing of the story and Rupert Grint didn't gurn once which was a bonus! Highly recommended. 

Have spent the evening OD-ing on reality tv where I had the misfortune of hearing one of the X-Factor lot murdering Love The Way You Lie (it was one of my favourite songs from this year) and Stacey Solomon winning I'm A Celebrity.  I absolutely love Stacey and I'm really glad she won.  A girl who unashamedly chooses savaloy and chips when told she could have anything she wants to eat is absolute quality in my book!  How funny was she?! Anyway, Mr Buble is on the tv so might catch a bit of him before I hit the sack. He's always good for eye candy.  And he can sing too so bonus all around :-)

Photo courtesy of Warner Bros/Jaap Buitendijk from uk.movies.ign.com website

Ice, ice, baby

Our front garden - Nov 2010

I’m SO OVER all this frickin snow!!  It’s like meeting up with an ex-boyfriend that ended on good terms.  You get all excited seeing them, even thinking about how pretty it all looks and all the fun you could have but ultimately, and depending on what you do, it’s all a bit cold and wet and damp and not really worth it. Bring on a balmy day in May!!

Drove back from Walton-on-Thames last night where it was more like ice-skating in the car and I got to experience the ABS in our car for the first time. Not doing that again.

In addition, because my hospital admittance has been delayed until the 6th Dec, I thought I would have this week to gad about town meeting up with folks for some much needed fun and frolics but due to this weather and our rubbish public transport me and my plans have been curtailed!   Rubbish.  At this rate, I will really end up institutionalised by the time the end of December comes what with being in hospital as well!  I will be like old man Brooks from the Shawshank Redemption and won’t want to go out, carving my name on the wall and the like :-(

Anyway, I have been cheering myself up by playing about on Grooveshark and throwing some shapes to some disco classics - a little bit of Barry White, mixed with Kool and the Gang via Tavares, the Real Thing and a little Chic.  Ohh yeah!  And I thought I would throw in some Lady Gaga in the mix too. Check. Me. Out.  I am a disco diva! ;-) Woo!  Hoo!  ♪ Rah, rah, ah, ah, ah, Roma, roma, ma,, Ooh La la ♫...

This was in between following the England 2018 World Cup bid. My god, how awesome was their presentation this morning???  I actually got a lump in my throat watching it and felt really excited about us getting the bloomin thing in 8 years.  I even got all nostalgic for Euro 96 when I whiled away many a match in pubs cheering on England.  Then Russia and its many millions of roubles  (allegedly *cough*) came along and ruined the party!  Gutted. And how disappointing for England.  I would be interested to see how Qatar will host all these matches in 50-degree temps in June/July and as a “dry” country how it will deal with all the football fans coming over?

Anyway, as an aside just wanted to say how absolutely, drop dead handsome David Beckham is looking. What a hottie!  Sigh.  He is just a vision to look at.  Like fine wine he just gets better with age. And he wears a suit so well too!  Sigh.  Had I been on the Fifa committee, I would have voted for England on the strength of David Beckham’s eyelashes and hair alone!  But then that’s just me.  And I’m weird like that!

photos courtesy of vanessavanillaflavour


 

My own harvest festival



While Vanessa made love to the camera, Mat made friends with the "harvesting" machine



Prior to this momentous event I had endured daily shots of G-CSF growth injections for nearly ten days.  This was to stimulate stem cell production.  Again, I had been warned of the side effects (primarily bone pain) but hadn’t bargained on feeling like someone was cutting me in half from the hips down whilst the rest of my bones were being wrung out.  I had this every day for nearly 10 days and the strongest pain killer I was allowed was a paracetamol. It was horrible. Apparently, this was a “really good sign” because this was an indicator of all the new stem cells mobilising themselves from the bone marrow into my bloodstream where they would stay ready for harvesting. 

I also had the pleasure of having a femoral line fitted which was surprisingly painless if a little undignified. The veins in my arms were too small for all the tubing needed. I did find it fascinating watching the ultrasound of my veins and arteries in my groin area and this made me feel a little better about the procedure.  The nurse involved was great in explaining what she was going to do.  I heard the word “femoral” and being a drama queen, thought of that hideous scene in Black Hawk Down but in the end, it was a walk in the park, quite dull really.

The actual stem cell harvest itself was pretty uneventful – I just had to lie there for a few hours while the machine did its thing – suck out blood from me from one tube, retrieve stem cells, return blood up another tube.  UCH have five of these machines which they obtained back in the 90s and so each machine was given a name befitting of its time – Ginger, Baby, Sporty, Scary and Posh.  I got Baby and needless to say as with the band, the busiest machines on the day were Ginger, Baby and Sporty. Not sure what Scary was doing but I noticed Posh at the end looking good but not really doing much.  No change there then!  Apparently, the unit is due to receive a brand new machine – small, compact with a shiny bottom and they are naming this one Kylie.



A miracle of modern science and they call me "Baby"


I was given two days to produce as many stem cells as possible and they give you these two days to allow your body as much chance for the harvest.  I was told that 4 million was the best number to aim for  – 2 million for use for the transplant now and 2 million to be frozen for use further along the line as and when I needed it.  I ended up producing 7.2 million. She shoots! She scores! 

I think other people were more delighted than me at the time. I was still on a come down from the actual harvest and the bone pain.  I also felt a little guilty as the chap next to me was asked to return the next day as he only produced 3.2 million stem cells that day.  He was told it was really rare for people to produce all the cells in one day, most people produce in two days blah, blah, blah.  And there was me sitting there over-producing after having reached my target. Gulp.
 
Now it’s a question of waiting for the hardest part of my treatment – the stem cell transplant.  I was due in hospital on the 1st Dec but my medical team wanted to give my body enough time to recover from the harvesting and so it’s been pushed to the 6th Dec when it’s all systems go.  I’ll keep you posted.

photos courtesy of vanessavanillaflavour

One too many Krispy Kremes...

As already mentioned, I have been pretty lucky compared to others in terms of my treatment.  The treatment regime I have been given involved radiotherapy at the start to shrink the tumour on my spine and 4 cycles of chemo alongside steroids and various other drugs cocktails.  Next stage is a stem cell transplant which will hopefully, give me the long term remission.  No guarantees mind but I remain positive. 

The treatments themselves are fine with the only “pain” coming from the cannulas being inserted but even then the initial pain is literally a pin prick. I did experience at the start of my treatment two needles from cannulas breaking in my arm.  The nurse trying to fit them commented on how it may have been my “tough” skin causing this until I pointed out to her that she was in fact hitting my bone whilst doing this. She got another nurse to do it in the end!  To be fair, that has been the only time I have had any issues with the  nurses, all the ones I have been involved with have been great fun as well as being thoroughly professional in every way.  I think broken needle nurse was just having a bad day at the time.

Unfortunately, they don't serve wine intravenously

The worse part of all the treatments has been the side effects and these have ranged from eye infections where I have been unable to see, joint pain, varying digestion issues, a squeaky voice etc but the main two side effects that have affected me the most are the weight gain from the steroids and the horrible tiredness.  The weight gain is a by product from the steroids and this also comes with hyperactivity so for a while it wasn’t unknown for me to be up at 3am thinking of things to do!  I always thought people with cancer are pale and wan and feeble looking except that from my own experiences, I look like I’ve just eaten one too many Krispy Kreme doughnuts with my moon face and Michelin man body! Never mind. Apparently, it does go over time.

As an aside and in case you were wondering – I still have my hair although it is shorter. The chemo I have had so far doesn’t result in hair loss but I will lose it during my stem cell transplant (the chemo used is stronger and nastier) and so I thought I would prepare for it by cutting my hair short.  I had been advised that to off-set the shock of losing my hair not only for me but for others, it was a good idea to cut it all off.  So I went for it.  I’m going to go bald anyway!  I have to say that although my short hair cut is good and people have commented on how it suits me etc I really do miss my long hair :-(




All my long hair gone - August 2010


The tiredness on the other hand is something else.  I have never felt anything like it before - it feels like a really bad hangover crossed with jet lag whilst having been up all night – but worse!  I have lost days sometimes just getting over it, mostly in front of daytime television – the 3rd mystery property may have come from auction as there was cash in the atttic? Or was it because the home abroad decided to come dine with me?!

photos courtesy of vanessavanillaflavour

That was the year that was




Watching Stevie Wonder in Hyde Park - June 2010

Although at times it has felt like my life has revolved around the 15th floor at UCH these last few months, when I have been able, I have done other things outside of my treatments.  As we approach the end of the year, I could do one of those cheesy retrospectives but I won’t – I’m really not that interesting!
 However, it does cheer me up to remember the good times I have had outside of the chemo and drugs cocktails.  Memories such as all the delicious TSC (Thursday Supper Club) dinners and the fun and laughter that usually brings;
all the dining out I was lucky enough to be taken to;
my amazing lunch at Claridges for Sarah’s London hen day and the way the UCH medical team were able to accommodate it amongst my treatments;
the gorgeous weddings of Sarah and Michael and Scott and Lucy and the ensuing shenanigans for both days;
the births of Alexander, Rosie and Roscoe – new members to my ever increasing circle of friends;
Café Rouge lunches with Kira and her need to power walk;
Stevie Wonder in Hyde Park (check out the photo above ^^^);
watching the World Cup and listening to the vuvuzelas; 
climbing with Amber and Ann;
climbing full stop and all the sexy climbing gear that goes with it;
eating wasabi peas with Marc;
celebrating my birthday and reliving our youth at Chessington World of Adventures and the ridiculous fun we had for the photo opportunity of dressing up as cowboys and cowgirls;
countless visits to the pub with Sam, Ben and Martha;
visits to the Lake District and Cornwall and their majestic beauty;
being there to experience the immersive Duchess of Malfi opera staged by Punchdrunk - the man sang opera to me whilst hugging me!! He was so close I could feel his heart beating.
being there to experience the immersive theatre piece that is You Me Bum Bum Train that was just a complete wow!! And being lucky enough to take part as an extra in its production;
being able to go back to work albeit on a part-time reduced hours basis between treatments. Not only did this make me feel “normal” again but it also gave me a much needed boost to my self-confidence – my brain still worked (!?!) and I am grateful to my managers for their understanding. 
Finally, our garden taking amazing shape from Mat’s simple sketch where I am really looking forward to seeing the fruits of our labour literally take root;
and just being, really.
I could go on but I won't bore you. It hasn't been a great year for me but there have been good memories too and I really appreciate them all.

I could also mention about how this illness has taught me about perspective, living for the now and all the other things you read about when it comes to cancer.  But I won’t because I didn’t need this illness to teach me about any of that.  I like to think that I already had perspective and living for the now and appreciation of all the good things in life.  What is important is that others learn about this too.  And that I don't forget.

photo courtesy of vanessavanillaflavour

And the Academy Award goes to….

Whenever I watch the Oscars and hear the winners gushing their thanks to various people, I think to myself do shut up, get a grip, and get over it!  But having gone through a bit of a medical odyssey these past few months, I know that I would not have been able to go through it all without the support of my fantastic family (both mine and Mat’s) and my fabulous friends. 

That Oscar winner, in whatever they have achieved has done it through a labour of love with the help of others and naturally want to express their thanks to those that mattered. For me, getting better and fighting this vile disease is my own labour of love over these last few months.  I, sort of, get now the need for the gushing.

I have been so humbled by all the lovely and kind messages of support which I have received and all the generosity people have shown. Whether it be spending time with me, giving me a quick phone call, sending me a text message, giving me small gifts or just making me laugh by taking the p*ss as per usual. It’s reassuring to know that I am still treated with disdain and sarcasm as before – sometimes richly deserved!!

The treatments and the various side effects I have been through have been hellish at times and sometimes I have felt like giving up just to escape from it all. But, these thoughts don’t really last long as I know I’ve got things to do, people to see and places to go to. I can’t let down all the people relying on me for all of that. I’m really far too busy to be ill!

I feel very lucky to know so many great people and to have your friendship and support. If you are reading this, rest assured that when I win my own Oscar, your name will be on that sheet of paper for when I get to do my speech. You know who you all are.  Thank you.

Quick re-cap

On Wednesday, 19th May 2010 I was told I had cancer. Specifically, myeloma which is a form of cancer of the blood.  It is a type of bone marrow cancer arising from plasma cells, which are normally found in the bone marrow. It is very rare for people under 40 and more of an “older” person’s cancer where average age of diagnosis is 71 although in recent years this has gone down to 60.  

When cancer was being handed out to unfortunates like myself, someone clearly recognised that “I don’t do common!” Don’t worry, it’s not catching so you can still talk and stand next to me even give me a hug if you really want to – it is just one of those things. Cancer doesn’t really give a sh*t like that.
Typical me, I bitch about a pain in my back for weeks thinking it’s a slipped disc and it turns out to be a tumour pushing against my spinal cord.  An old people’s one at that! What are the chances?!

It’s highly treatable but no “cure” as such and my prognosis is good – it just all depends on how successful the various treatments they throw at me are. Touch wood, so far so good.  Radiotherapy, chemotherapy and stem cell transplants – bring it on!!

No point in frightening yourself by Googling myeloma – it’s pretty scary stuff and a lot of stuff online is pretty old.  I have given up comparing myself to other cancer fighters and am just concentrating on myself, my treatments and what my medical team at UCH inform me. I do find it useful to hear about other people’s experiences but ultimately I am concentrating on me and my treatments given the complexities of this disease.

Understandably I was pretty devastated when I was told of my cancer – it’s not every day you get told you have a life threatening and possible life limiting disease – especially when my life was pretty good up until then. I’m not really sure how to describe the feeling. It’s possibly like standing on a beautiful rug that is your life and that rug being pulled from under your feet all of a sudden; it’s perhaps like your life being a beautiful canvas painting and someone kicking a dirty great big hole in it or to coin a phrase, someone p*ssing on your parade. 

Anyways, no point in getting too downbeat as it doesn’t really solve anything and I know that rugs can be straightened out, canvas paintings repaired and parades re-scheduled for a sunny day. 

I have been brought up to get on with it and I may whinge a bit and have a bit of a moan but whatever I need to do, it gets done. And more often than not it does – however randomly I get there!