Update Number 22

Hi all,

It's been a very long week but I'm finally back and myself after Chemo 3. Done and ticked off. Half way there.

This week has been a tough one as not only I felt rubbish after the chemo but the steroids I have to take for 5 days after, greatly affected my tummy with acid reflux. So Monday started by me vomiting and pretty much continued with constant nausea and dry heaving until I started feeling better on Friday. All that and the lack of food which obviously made me really weak ,together with normal fatigue of the chemo meant that I didn't really get up to much this week. I had a couple of visitors to keep me sane and Simon worked from home on Thursday and Friday to be my amazing carer when I couldn't really look after myself. Poor mum and dad were hearing all about this from Noosa, not being able to help physically but offering me and Simon comfort on the brief moments I was able to speak to them. Unfortunately, this is however, completely normal as the steroids are nasty but essential and they have given me a pill (charcoal or something) which I take all the time now- I would have had injections or anything to prevent the nausea! Other than that- all good for my health.

My carer Simon with dinner last week - yum!

But alas, this is not a grumpy email as I am so so much better. My beautiful crisp and sunny today consisted of waking up late, being given an egg muffin by my lovely boyfriend (second day running I might add!), followed by a Skype tour of my parent's new pad. We then went out to Clapham Old Town Farmer's Market and picked up some cupcakes, then went for a stroll on Northcote Road and a drink with some good friends who brought me jelly belly's- thanks Lu! My evening consisted of Fish and Chips and snuggling - my perfect day! You certainly appreciate feeling better once you have been feeling crap for about 2 weeks including my lovely hospital visit last week. Long wig joined Simon and I on our daytime date and for the first time in ages I felt like a normal girl with her normal boyfriend. Poor Simon has been walking about on eggshells as I was like Volcano Eykafallajokull (could blow at any time) and refused to be touched even a little bit so he was grateful to have his girlfriend back this weekend.

Alfredo came to visit on Tuesday and although he was a big bundle of energy who I could only watch crawl around the flat like Tasmanian devil, we did manage a small amount of child abuse by making him try on all the hats I have been given. We managed to snap most of the hats before meltdown but unfortunately not all so please see the blog for the results. (Please feel free to post some comments as I'm sure Simon and I haven't done him justice.)

I have now officially on my way to a sugar induced coma (really good for the stomach Emma!) and I have run out of things to say, so I will leave you be and wishing you a very happy week.

Wrap up warm

Lots of love and kisses

Em

XX

This is the way he rolls at his crib with his hos...

My name is Henrik and I am from Amshterdam

"Duuuuude, did you see that smokin' hot mama?"

The only non hat- my sick bucket so of course, his favourite...

Mama's favourite too!

"I'm a little teapot, short and stout..."

"Please mama. Can I have some more?"

"No woman, no cry".... not so much!

"This is not 100% cashmere...waaahhhh!"

"This water is not 10 degrees. I ONLY drink water at 10 degrees" 

"...and I did it myyyyyyyy wayyyyyyyy...."

Update Number 21

Another update as I am feeling generous this week but only a short one.

I am home. I was given the all clear this morning and they found nothing which is insanely common as there are millions of types of bugs and as they couldn't narrow it down they just gave me' broad spectrum antibiotics which seem to have done the trick!!

 There was a little battle between the ward boss Mr Steel (who looked like a cross between an 70s porn star with a creepy moustache and dave grohl with a rock star moustache- between you and me a strangely sexy mix- i never did get the courage up to ask if this was a movember moment or a permanent fixture to his face) and bower boss as the ward boss tried to discharge me last night and at every possibility as to be honest I was a lot more well than most people in there and I was using up precious bed space but what bower wants bower gets so i was dismissed on his orders.  

Mmmm... 70s Porn Star

Mmmm... Dave Grohl

The infamous Prof Bower!!!!

I was so well that i started on the first and most lengthly section of chemo at 1h30- the R of R-CHOP so only need chop tomorrow which are 10 mins, 20 mins and 40 mins followed by though which shall not be named. I should be out of the hospital tomorrow in a few less hours than I would be. Im going to visit little Aimee as well from the ward too. She was diagnosis of lupus which I think is going to be a bit of a longer and tougher journey than me which is a big shame but at least she has an answer- the lack of answers is the most difficult.

Mum and dad have gone off to Aus tonight so will be reading this in 12 hours when they land in Singapore. As hard as it was to get on that plane for them and leave me, Amy and Alfred behind they really needed to go and move out of their rental house and into their new home which they have completely renovated whist being super parents in London for us all. They go to noosa for a bit of rest and cancer free time which they unquestionably deserve. But this means there are some vacant positions available: "secretary" "driver", "cleaner" "washer" "cook" "counsellor" and "babysitter" and thats just for me! Applications to the email above.

There is also another addition to the mccknight household, drum roll please, long brown wig!!!!! Some very old family friends (eekk not too old- oops!) from Washington extremely kindly purchased it as a present to me and I absolutely adore it. For some reason it fits much better than the other one, which I am slightly bored of because it is "so me'" and I think looks a darn lot better. In fact it has inspired me to work harder so i can employ a minion to do my hair exactly like it when it grows long enough!! So dear friends and family if you see simon giving a kiss to a long haired stunning brunette on the street, think twice before kicking him in the gonads as it that stunner may be me!!

Thank you for all your "grow blood cells grow" celebrations- they worked!! My neutrophils were the highest they've ever been at 40!!! Good work team!

Right off to be drugged now with my rohypnil (sp) for a good nights sleep and we'll speak on the other side of chemo 3.

Lots of love and kisses to you all
Em xx

Sent from my iPhone

Update Number 20

Hi all,

Quick update to easy your worries as I know you are all super worried!!

Still here in aau in Chelsea and Westminster- should be in Thomas maccauley but there's no room. Feeling much better but not 100%. My fever has stabilised and my bloods and everything are fine but now I am off the antibiotics, I need to be 'normal' for the next 24 hours before chemo will even be considered. The hickmann line can be used which is fabulous. I tried to be brave when the blood lady (her job is to got round the hospital taking blood off patients all day- literally my worst career choice ever) came this morning and very begrudgingly let her try and she couldn't get blood so I  immediately cried and fired her and told the doctor on her. You don't mess with me and my veins.

Blood taker ladies mess (bottom one!)- OWWWW big bruise!!!

Cannula mess on the other arm - human pin cushion me!!

My neighbours have all pretty much changed. Mr grumpy old man and mr serious head concussion were discharged. Mrs bravest lady in the world  has been transferred- where they tried 13 times to cannulate her and made her a pin cushion and she was still smiling and telling jokes while I was dry-heaving and running out of the room. Little aimee is beside me' is so sweet. I've kind of adopted her as she is in the diagnostic stage where I was not so long ago so been giving her advice about biopsies and other procedures I know about. My favourite Margaret has been transferred out to another ward and boy was she a source of entertainment today. A few choice comments to her and from her whilst she was being washed or moved. "how dare you touch me", "don't bite me Margaret", "you swine", yelling out for help from the people "on the street", "get off me you beasts" all with such venom and when she didn't get her own way she would say "I'm going to be sick" which worked once with each nurse until they cottoned on to her wicked ways. Even though she has now been moved I'm pretty sure I'll hear "could I have a cold drink please?" which she repeated at least 350 times throughout the night. I'll miss her.

A little bit longer than I thought I would write but I couldn't not share Margaret with the world!

So the plan is for me' to be fine for 24 hours then chemo on Friday either as a day patient on the medical day unit downstairs or in thomas maccauley if I have been moved at that point. My neutrophils (yes those bloody things again) have dropped so I am low again so all your "grow White blood cells grow" dances and songs will be gratefully received. The little injections will make them grow if your dances/ songs don't! Yea!!

Right bedtime for me' now.

Lots of love and hugs
Em xxx

Sent from my iPhone

Update Number 19

Alas, we have transgressed backwards as I am writing yet another update from a hospital bed in aau. So literally 5 minutes after I sent my update last night i took my temperature and at 38.4 simon had to rush me to the hospital a&e. This temperature combined with my prickly heat, fever, nausea and vomiting meant either my body may have very well contracted a bit of a bug. Not surprising really considering how chilly it is outside and how up and down my immune system has been.

So after 6 hours in a&e, a blood test taking out 17 pints from my arm (couldn't do it in the line apparently- fabulous!) and a canula in my other arm for three sets of antibiotics and a drip (again no line was used! Don't they understand needle phobia? I actually vomited when the doctor did the canula so kudos to him for sticking me with a needle while I was violently heaving. Finally some blood from my hickmann line was also taken.

After arriving at 7.30pm at 1.45 I was finally taken out of a&e and into aau, the delay due to a massive shortage of beds. At 4.20 the doctor managed to see me' and said there definitely was an infection somewhere in my body, thus my high temperature. This was a comfort as I was beginning to think I had got myself into a Pavlov's Bell state by feeling nauseous in preparation for the chemo which makes me nauseous. The mind can be a very powerful thing. While in was in hospital the first time, one of the oncologists said a story of a chemo patient who had had the all clear for about 5 years who bumped into their chemo doctor in the supermarket and promptly vomited at his feet at the pure sight of him. I've got visuals of puking over prof bowers basket in tesco- revenge for his horrible wig comment!

So no chemo for this week anyway until I am a back and kicking. Thanks for your chemo wishes and hopefully we will get this show back on the road asap. I am literally opposite the first bed I was admitted into which is weird and there are a couple of familiar faces in the doctors and nurses, the ward is full and there is a right mix. The little lady next to me' thinks its 1939 and keeps asking for water even though she has been told she is nil by mouth literally 238 times. She's a right feisty thing and pretty much refuses to answer questions or be examined. She's also half deaf so there are people yelling at her constantly. God I've missed this place!!!

I'm due to be here until tomorrow at the moment but as we all know that everything changes on a daily if not hourly basis. Doctors and ducklings are en route so I best be off.

Please can you forward this on to people as it's from my iPhone and I'm not sure I've got all the addresses on here. I'll pop it on the blog- taurusnotcancer.blogspot.com

Lots of love and kisses

Em xxx

Sent from my iPhone

Update Number 18

Hi all,


Sorry for neglecting you again but this week has been thankfully stress and drama free and frankly I'm not sure what I have done, it's that boring. 

Neutrophils v bugs
through a microscope

Health wise- physical and mental- I've been good. My neutrophils (good White cells) were low as to be expected after the chemo so I had nurse simon administer some more of those lovely little injections (which have a hormone in them to make my bones make more neutrophils) and after my course of 3 days which is what I had last time, my neutrophil level had actually gone down which wasn't great. It doesn't hurt or make me feel crappy just means I have to be super careful about what I eat for fear of poisoning myself and need to wrap up warm for fear of giving myself a cold. So three more days from nurse simon and some more hospital visits, my neutrophils shot through the roof. Given that the average optimal level of neutrophils in the human body is between 2.5 and 8.5, my level of 25 was a huge jump. No more injections for a little while then! Good news as you are no longer being injected by your loved one but also as your bones ache like you have done and a marathon or two (I imagine and will know the pain in 2012 Cathy and Tom I promise!!) So I was pretty fatigued most of the week and weekend so I guess that's what I've been doing- resting my concrete block legs, hips and back.  


I also went to work for a couple of hours on Wednesday to say hi and check through my 900 emails. It was lovely to distract Nina and the rest of the team again and feel human but I'm not sure how you lot do it- work is very tiring!! Much prefer my sofa and tv!! It was so worth it though. 

He stole my haircut - bastard!

Prof Bower is well as he can be and I saw him a couple of times last week due to my bipolar neutrophils. Ever the charmer, he wandered over and exclaimed "we've had a quote and decided your wig is the worst wig we have ever seen." nice huh! His point which he always has a mangled way of getting to, is that I should embrace the bald. Despite it being very very cold outside I have begun to leave wig at home and just wear a hat. Think that is also because I have yet to wash wig so it is looking a little scraggly and unloved presently so tonight I can't do anything as I am washing my hair (in a bowl with special shampoo and not in the shower on my head in case you were wondering).


Also found out this week that they only do 50 cardial drains a year in the hospital so I was a rare treat on the AAU- no wonder I was so popular with all the duckings in the ward.  Speaking of being popular, sorry to wax lyrical but I've been reading through all the emails I have received throughout the last 6/7 weeks and I am so overwhelmed by all your support and care. I am really sorry if I have yet to get back to you and I know that it is incredibly rude given the time you have taken out of your busy lives to brighten my day with an email but some days can be a little tricky and although those days are getting better as the chemo leaves my body before the next cycle, my head isn't always with it. At the moment, my to do list is very long and is being added to each day- I am not at my most productive. Enough shoddy cancer excuses, please know that I am very grateful and don't stop them coming- even with the new blog!! Leave abusive comments if you like- if they are anonymous I wont know they're from you!! taurusnotcancer.blogspot.com 


Bit slushy update today but not feeling 100% as I have round 3 in the boxing ring tomorrow which I am nervous about and is making me' feel nauseous in advance. Bower has given the okay to sedation tomorrow so they will date rape drug me up (yes the actual one-'only a little so I am dopey and not passed out) before the lumbar puncture tomorrow. So as you can probably sense from my tone my humour has taken a long weekend in the countryside and is stuck in traffic somewhere on the m4. After this, I'm halfway through and counting. Bring on the next couple of months quickly! Given that it doesn't seem too long since my last one, hopefully that christmas wish might be granted. 

I hope you all are well and keeping warm (cool in Australia/ NZ) and see you on the other side of round 3.


Lots of hugs and kisses 
Em xxx


Sent from my iPhone

Update Number 17

Hello all

I've been a bit bipolar recently and a bit grumpy but I am feeling really good again. It's been a week since chemo and I am finally feeling human again. I think that is just how long it will take each time which sucks but at least we can plan and cater for my absence from society and humanity with a bit of forward planning and fridge filling prior to chemo. Cancer Emma isn't too much fun so we should just keep her locked up methinks! Saying that boring ill Emma breeds fun active Emma so I guess she can stay for the next 5 months if she keeps quiet.

I have been a busy little bee and in order to keep my little brain stimulated, I have created a blog which include all my updates from hospital and a couple of additional videos, photos and links of my time in hospital and beyond!! I keep forgetting people on the emails and not sure if everyone has seen all the past updates so now I need not worry because it'll be up to you check- i'm so so lazy now! The address is http://taurusnotcancer.blogspot.com/- enjoy!!

This week has been pretty calm apart from a couple of hospital visits for check ups and bloods. I had my stitches in my chest of the line out so it's wonderful that that is the biggest news of the week. All seems to be going well with the body so I am not complaining except I have joined the world of the follicly impaired- yep that's right- I'm bald!!! Very bald and I have to say it's a very weird experience- seeing your head!

Now you see it....

Now you don't...errr,,,hold on that's not right...

Ew! The bath- sorry I had to add!

Last Sunday my hair was still staying put but only because I wasn't washing it or even touching it for fear it would fall out except I was shedding everywhere I lay my head. So I took the bull by it's horns and with the help of my superstar boyfriend we washed my hair and got me about 90% bald! Simon even cleaned up the bath and was an absolute support for me when I was a little teary. It was so cathartic and although a little emotional, I felt all the better after. It was going to happen eventually so it was nice to be in control. It was rather fitting that Sunday was also Halloween so as we, Simon, the bald head and me watched The Witches and avoided trick or treaters (I did it last year so I thought my fellow building mates could step up this year), for the first time in my life, I could relate to The Witches. They were just misunderstood. You would be grumpy and bitter too if you had horrible bald heads like they do. Such a shame. Simon almost undid all his good work by suggesting I didn't need a costume this year and I could easily answer the door and scare small children au natural. Nice things to Emma + Horrible things to Emma = neutral so I guess he's in the clear. 

The Witches: Misunderstood

Mum and I got me a buzz cut on Monday so all the wispy bits were removed and I have a beautifully bald, oval head which is now always on show (Pictures on the blog)!!! I keep catching my round pale head by surprise in either my shadow or the mirror so get a mini shock each time, but bar removing all the mirrors and reflective surfaces in the house, I have to recall it's only temporary and my hair will return to it's rightful place on my head. The silver lining is that I haven't shaved my legs or under arms in a week- score!! For the record, in case you are keeping track, still have eyebrows and eyelashes! As this is a family friendly blog (occasional swear words notwithstanding) I will leave you to ponder on the status of the rest of my hair. Let's not over share!

Dad and I had a lovely, father-daughter day out to Costco yesterday which was marvelous. Please be expecting all your Christmas presents from this, my new favourite store. I will just leave it up to you as to whether you require a months supply of Haribo (or a 3 day supply for the Endemol office ;) ), a BFG sized tinned tuna or more loo roll than you can shake a stick at. Who said practicality wasn't glamorous!!  

A-Mazing! The best place in the world...ever

Project House-into-Home is very much underway and I am slowly turning our abode into a lovely little set up for us both, although the circumstances are rather different from what I ever wanted or imagined them to be (who thinks they will get cancer!), when I am feeling well it's nice to be able to do things my previously busy life would not have allowed like bake (albeit badly and from a packet) and sort out my old clothes for ebay. This is obviously the silver lining though- I'd much rather be healthy and back to normal but I'm sure that time will come and I'll catch myself craving my lethargic Cancer life momentarily- if just for the pace of life rather than the delightful chemo treatment!  

As this email has taken me a ridiculous 3 days and woke me up at the middle of the night, at 5:18am i will sign off.

I hope you all have wonderful bonfire nights and sorry I couldn't deliver on my party promise (joint McKnight decision that it was just a bit too risky). Be safe and wrap up warm and we'll speak soon.

Lots of love and kisses

Em

XXX

Update Number 16

Sent: Saturday, October 30, 2010 10:56 AM

Hi all,

I hope you are well. One week more down and one more chemo session down.

As seems to be the case with the life of Emma at the moment, good news and bad.

Good news, I had an x-ray on Tuesday which showed that my tennis ball of a tumour has gone down considerably which is great news after one session of chemo. Also my white blood cells had reacted well to my daily injections and had been growing back my good cells at a super rate. So good news all round.

Bad news which isn't actually bad news- I'm just being dramatic! but I had my second boxing match with the chemo on Wednesday which went as well as expected. I think I've just got to acknowledge that it will knock me for six and push me back a couple of days which is tough when you've been plodding along nicely. Along with the chemo, I had the normal lumbar puncture (what House is always doing to his patients) which is a typical part of my treatment where they put a bit of chemo into my spine to make sure the bad cells don't nest there. It's pretty grizzly on a normal day but Shiros, my doctor who is very very good at them and done hundreds, couldn't find the right spot so a 5 minute procedure took 30 mins and really tested my composure and mum and Simon's who were also in the room. I think they were almost all in tears by the end of it. I certainly was!!

So it's not really bad news so I apologise for misleading you but I am feeling a little sorry for myself which I am allowing myself for a couple of days and then I;m going to get over it and carry on as normal until chemo 3 in 3 weeks!! Fun and games- you are jealous I know you are!!

Wig got an outing last night- which went down a treat. People who didn't know complimented me on my new haircut and people who did complimented me on my wig!! Hair's still hanging in there!

Bit of a short and sweet email this time but I'll be back on form soon.

Lots of hugs and kisses

Em
XXX

Update Number 15

On 23 Oct 2010, at 14:06, Emma McCaughey wrote:

Hi all, 

I wanted to wait to give you the whole picture before I sent my next update.

Okay, good news and bad news (which turns into good news which is the reason for my delay!) 

Good news, my bone marrow results confirmed the fact that the cancer hasn't spread to other parts of my body, it's just in my chest. This was confirmed by the PET scan and now reconfirmed by the bone marrow. I think the reason for such an emphasis on the bone marrow and why we were waiting for these results for a true confirmation, is the difference between taking pictures of the moon (PET scan) and going to the moon and getting a sample (bone marrow sample). So all clear!

Badish news is that I had my blood test on Tuesday which is standard for each hospital visit (god bless the Hickmann Line) and my neutrophil count was down to zero. These are basically 70% of my white blood cells and thus my immune system and they are the first ones to attack any infection. The level should be from which should be between about 2 to 7.5 (my last count was 3.6) so it was really low and I was under red alert for any infection or fever which could have been life threatening. Bit scary.

Anyway, the Prof was not worried and in fact delighted as if the chemo has hit my immune system that hard it most probably hit my tumor just as hard. As a result, he won't lower my dosage of chemo but will manage the neutrophil production which is what he did through tiny daily injections that dad and Simon ended up giving me! I was careful not to annoy either of them just before they jabbed me! So after injections on Tues, Wed and Thurs, I headed back into the hospital for a blood test on Fri and my count is back up to 2.9 which was very good that I reacted so quickly. They won't give this to me willy nilly after the next chemo but it's good to know that we have a quick "cure" if this happens again. So that's the bad to good news.

If you want to read up anymore on what I have, I highly recommend this website as it is not scary at all and can fill in the gaps I have no doubt created with my chat above - http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Lymphomanon-Hodgkin/Non-Hodgkinlymphoma.aspx

The winning wig!!

Enough of boring hospital stuff, some other news, I went wig shopping with Amy on Thursday which it is a little pre-emptive (my hair's still hanging in there!!) but was a really wonderful experience considering. I tried all sorts on and found two awesome ones but only got one. The one I went for a chocolate brown bob not dissimilar to what I had before which is what we were striving for so I didn't feel alien when I looked in the mirror. Attached is a picture. The second one was chocolate brown and long (past boob level!!!)- I've never had proper long hair and although I didn't get it, I can't stop thinking about it. Another picture attached. Plus I figure that if I do go and get it, I can wear it have a bad hair day in the future. All you girls (and I'm sure the guys too) are going to be jealous of my hassle- free hair! Thoughts please????

Long hair for once in my life?

Blonde? Yeah Right!!!

Another contender- a bit too neat for me though

Alfred at the Wig Shop- I know he is not a performing monkey but I like to try!


I went into work on Tuesday which was so good to see everyone and got the most ridiculously huge box of Australian junk food from the Sydney office. I shouldn't say but mum ate the whole packet of the white chocolate timtams in one go so felt pretty uncomfortable for a couple of hours. I am not much better- I'm sure I'll add diabetes to my list of ailments shortly. Thank you so much. I was also the very grateful recipient of a number of other goodies. Honestly, get cancer you get lots of presents- it's brilliant!! Work have been so incredibly supportive so I am very lucky to have not only great coworkers but also great friends.

So future plans involve a very chilled weekend and a Tuesday appointment and then chemo on Wednesday which I'm obviously a bit nervous about but hey ho, it's going to make me better in the long run.

I'll keep you posted next week.

Thanks to everyone for the wonderful hats. My pile is growing!!

Lots of love and kisses

Em XXX

Update Number 14

Ha ha! Not unhappy just concentrating!!

On 18 Oct 2010, at 13:07, Emma McCaughey wrote:

Hi all,

I hope you had a good week.

I am doing well and according to all I meet, looking very well too. The pixie crop has gone down a treat although I am trying not to get too attached to any hair I have at the moment. I actually went out yesterday and felt pretty which is something when you have tubes coming out of you and the shape of your head on show!!!

I am taking the good days as they come as I think they will become fewer and further between the more the treatment works its magic. I'm feeling well and the Hickmann line is starting to settle down and there are periods I forget all about it- only short ones but still- baby steps. The tingly fingertips are a bit annoying but absolutely livable in terms of side effects.

Last week was good. Tuesday was hospital day. It was weird seeing familiar faces in a different area of the hospital. Prof Bower was his usually quirky and delightful self- I honestly have nothing but respect and admiration for that man however much he and dad talk football over my condition! I am honestly in the best hands as he is top of his game and has won awards for bringing cancer care to Vietnam, an area where my condition would be a death sentence. So hospital brought, blood tests (which came back healthy!) and a dressing change- easy peasy lemon squeezey. Hopefully same again this Tuesday and Chemo next week ew!

Wednesday consisted of breakfast with mum, dad, Amy and Alfred followed by a nap- rock and roll.

Thursday was the funeral of Max Lowry. As much as you can say this about a funeral, it was a wonderful ceremony. Lots of tears, laughter and music exactly how it should have been. My brother in law Sam, did the most incredible speech which did justice to the wonderful and complex man Max was. It was a really long day but it was wonderful catching up with mutual friends and brought my endurance and stamina up no end. [NB all of Max's work if you want to have a look-  Max Lowry's Amazing 3D Art] 

Friday and the weekend brought a quick stop at a birthday party, shopping, cinema, walk in the park and lots of yummy and healthy food. All in all a good weekend but a bit boring to relay to you all in any greater detail than this. 

I have seen a few of you but I want the rest who haven't seen me yet to know my headspace as it is not always easy to convey on group emails. I am honestly fine. This situation is crappy and it sucks and I'd obviously rather not be in this way but what I have is the best of a bad bunch. I am under the best medical eyes and I am under the best support from Simon and my family (and friends obviously). This type of non-hodgkin lymphoma happens in 10,000 people each year and the treatment and success rate is high. The high grade type I have which means it is fast growing is good as it means that it reacts well to treatment. Also, it appears to be localised in one area on my chest- a large area the size of a tennis ball but still, it hasn't spread. I am going to look after myself and eat well and in 6 months this will be an element of my past that made me stronger. So please don't worry, I'm not naive I know this is going to be crappy but I am an out-patient- they wouldn't let me go home if it was a risk. 

I am working through replying to the emails that you have sent to me during my hospital stay and since. I cannot ever tell you how much your emails meant to me when I was "locked up" even if you all felt they were trivial and boring. Believe me they were but that's what made them brilliant!!

I'll keep you posted on any news and updates and hopefully will see more of you soon.

Lots of love and kisses

XXX

Update Number 13

Sent: Monday, October 11, 2010 4:41 PM

hi all,

i'm back and realise i have been rather neglectful on my very interesting life so here i am keeping you posted again.

I am at home and have been since Friday so had the weekend with a few visitors and a brief walk in the park to keep me out of trouble. this is it now unless i get ill - i am an outpatient. the transitiion back home has been a little tricky as you can imagine. i haven't really had to think or do anything for 3 and 1/2 weeks since i was admitted into hospital and now i am learning how to be a grown up again, all with the engergy of a sedated sloth, so the weekend was a little challenging at times. Simon is becoming a wizz at cooking and cleaning up as we have to be very health concious due to my immune system being basically non- existent at times. i basically have to eat like a pregnant woman and then some, so i am currently mourning sushi, seafood and delicious gooey cheeses, which you can imagine is a very, very dark time for me.

new haircut

Mum is currently cleaning the house upstairs and running about like a mad woman whilst i consume crisps on the sofa (hey, i have been told i need to maintain my weight for the chemotherapy) but i have an excuse as it's been a busy day- it was haircut day. so attached for all your viewing pleasure is my new pixie crop which was done by a good family friend which was a much lovelier experience than going into a busy salon and having a stranger chat at you for a hour. Michelle did such a great job and mum even managed to get a quick trim in too. 

Chuckster! 

I met and bonded with Chuck who is supercute- also included attached and although i am naughty for going in for a cuddle, i am not at my most vunerable so it was so worth it. Alfred is being so cute as well- i wasn't feeling too great when i arrived at amy and sam's to get my hair done so lay on the sofa and rested for a bit and he seemed to sense it and was quiet and kept looking at me, then crawled over for a cuddle- what a smart little boy. He doesn't really know what to think about Chuck so his face is a picture whenever chuck moves and he keeps calling him a dog- which everything is at the moment so he's almost there!

Random videos of Chuck being active, Mum trying to work an iPhone camera and the clean-up after my haircut

Tomorrow is back into the hospital but just for some blood and for some check ups so no yucky chemo for another 2 weeks. In honesty, I'm doing fine. There are times i feel I can do this and others when it is a bit of a struggle which is only normal considering how quickly all this has come about and how short a time i have actually been trying to live a normal life since being discharged. My hickmann line, although an absolutle godsend as it prevents me being poked and prodded (my veins at least) when im back in hospital, is still a source of discomfort but that is to be expected and when in a week or two when it settles and i acclimatise to this thing in my neck, i hope i will settle down too into my new life of 6 months.

Thursday is the funeral for Max which will be a difficult day for everyone so I will try and keep you updated maybe on Friday or Wed if I get to hospital and they say "oooppps how embarrassing, we mixed up your medical records, you only have a common cold" 

I will try and be a bit more structured now with responding to emails and texts so thank you for your kind emails, letters, flowers and gifts. They are so very much appreciated and i am smiling and crying along with them even if i don't get back to you.

Lots of love and kisses

XXX

Update Number 10 which I've put as 11 (I got confused!)

Date: Fri, 8 Oct 2010 09:44:45 +0100

Hi all,

Sorry for my absence yesterday but it wasn't a good day. After my chop chemo and lumbar procedure, I got very nauseous and was vomiting. Not very nice unfortunately.

Not that I was expecting to be well after being pumped full of poison but after being told some people bound out of hospital on their first day, I wasn't expecting to be so ill. Saying that we found a combination of things that settle my tummy and at least I was in hospital so I had a full pharmacy to hand. I might be out today depending on the nausea but we'll have to see. I don't want to put undue pressure on simon, mum and dad if I felt as I did yesterday. I wasn't the most fun to hang around.

Alas, project kitten Bower is no more. It was poo pooed by my doctors because of poo! Apparently most animals have a bit of toxicity in their poop which needs to be greatly avoided for people with low immune systems which I will definitely have. But Amy and Sam are still getting their kitten, Chuck so I can go over for baby and kitten cuddles and leave when they poop!!

I think that's all from end at the moment, not feeling well isn't that interesting and I don't want to bore you and lose my captive audience!!

Send me your news as it's nice to hear about the normal world.

Lots of love and kisses
Xxx

Sent from my iPhone

Update Number 9

Sent: 06 October 2010 12:26
Hi all,

Good morning- sorry I am a bit late today but had a bone marrow thing this  morning which went well.

Yesterday wasn't a great day. I really wasn't looking forward to the hickmann line going in which wasn't great and is a wee bit sore. Saying that all I've had is nurofen so it's uncomfortable rather than painful. They came and took blood and it was pain free!! Bliss!

Today is better. Read the secret this morning so in better place today plus the bone marrow is a much smaller and less painful procedure. Anyway enough about this cancer stuff. WE ARE GETTING A KITTEN!!!

As I was getting my bone marrow thing, I was in a ward and there was a woman beside me talking about 2 kittens she's just got and I turned to simon and said I wanted a kitten. He dismissed me as I'm always saying that about kittens/ dogs/ babies (the last one is usually to watch him sweat!!) but little did I know mum was already plotting and is convinced that dad spilled the beans on her secret- honestly he didn't mum! So Amy and I are getting a little brothers and/or sisters each and we can babysit whenever the other isn't around!!! Simon and I are going to call ours Bower!!! Nicknamed The Professor when it is being quirky and
misbehaving. An apt ode to the prof here we think!! Not sure how much he would like that.

Again some more changes, I need to do part one of my chemo today which will take 5 hours as they drip it really slowly to ensure you don't react allergically to it. So one more sleep then tomorrow is chemo 2 called the chop (no idea why) which makes me feel like I'm an animal off
to be castrated!! Nice thought!! That should be a couple of hours in the morning followed by a lumbar puncture which is a tiny injection of the chemo into the spinal fluid as sometimes the chemo drugs don't filter through leaving the spinal fluid and the fluid around the brain at risk
from a relapse as it hasn't been treated with the chemo. Does that make sense? Basically it's something I'll have to have each chemo session which won't be a big deal. Apparently I'm a tuesday girl so I will go in each week on tues for tests and/ or chats and every 3rd tues will be
chemo and lumbar.

Planning on having my hair chopped off soon, maybe next week. It's definitely going to fall out so I think I would just rather take control and have our family friend do it rather than wait for it to start falling out with long hair. Pixie cut here I come!!

Better day today and the sun is shining. Think yesterday was my hiccup and back on track. Right I'm off to shop for cat stuff- woop!! Woop!! And home on Friday to hopefully meet the new McKnight addition.

Lots of hugs and kisses
Xxx

Update Number 8

Alfred in one of the many hats in the park

Sent: 04 October 2010 09:38
Morning all,

I hope you are all well and had a good weekend.

Felt weird not emailing yesterday but only momentarily and then I rolled over and got some snuggles so the idea to keep you updated was completely extinguished and I forgot about you all!!

Home was good. Thanks to the weather of constant rain, we were pretty much housebound but a couple of films, a couple of visitors, Thai takeaway and the x factor kept me occupied. Don't tell me anything about last night (i didn't watch because i was back in boarding school) as that's perfect "I've just had my first bout of chemo and I don't want to use my brain" fodder for Thursday. We'll see how long I can avoid the tabloids or idle chatter. What am I talking about? I hate the x factor. Oh god. Is this my path to becoming a fat, bald person who sits on the sofa manically laughing and crying and singing along to the contestants, spending their life savings voting on that little boy/ girl who's name they'll forget 2 weeks later!!! Jeremy Kyle and crappy daytime tv next... Slippery slope!!!

Small trauma day today- Kanula and pet scan and surprise blood test- always welcome on a Monday morning. Got dad here to keep me company. He came in and said "aren't you nil by mouth?" just as I was considering a Claire Jago muffin. Which I am, so he pretty much saved the day and prevented another appointment reshuffle. Pretty much a hero in my book
today!!

Speaking of books, a consultant I was chatting too recommended the book he was reading "the secret" by rhonda Byrne which is basically a self help book about visualising yourself in a place and it will happen- so in a dream job, with your soul mate etc. I already had this at home from a while back and thought it couldn't do any harm so started reading it again last night. So went to sleep and woke up with a earplug missing and visualised myself with my earplug in my hand, putting it back in my ear then going back to sleep. So I opened my eyes, found the earplug, put it in my ear and went back to sleep. See this thing works!!! Baby steps hey?

Thanks again for all your emails and calls. Great to hear from old friends and new.

Speak tomorrow when I am a little poorer for buying a lovely dress or shoes to congratulate myself for being brave today!!!

Lots of love and kisses
Xxx

Sent from my iPhone