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