I got the Poison :I got the remedy!

Where to start..........

Last story before the big chop was from the hospital, so I ll go back to there, Keith came to visit Sunday morning, more blood tests antibiotic drip etc, same old routine, then wait for the Doctors ward round, he appeared and I thought, here comes more bad news.... but ....you neutrophils are up again, not as much as we hoped, but in the right direction , you obviously would be happier at home, with more sleep etc etc so you can go home with oral antibiotics and if you come back for blood test in the morning, but any sign of high temp etc then come back, YES, brilliant, of course, I ve done my homework I  replied! He laughed and said I can tell!

So we packed up all the stuff, and there was a lot to pack! Two trips to the car and off we went, home for supernoodles! Thanks again and Andrea, so soft and didn’t hurt at all, mouth is improving now though so back to nice healthily dinners apart from last night as we didn’t eat till 9 after the hair excitement !

So I came home, Lottie was at grandmas so said let her stay ther you go two Keith eat properly, both of you ,t hen bring her back and I will compose myself for when you return, I can see my Mum and sister that way too, was desperate to see them both.

When they arrived home she was so pleased to see me, just held her for ages, massive cuggles! ( Lottie can’t say cuddle!) we cuddled on the chair and waited for Tracy to come over, couldn’t wait to see her, We were planning to catch up at hospital, but this was better, she could come to my house! It  was great to see her, had a fun afternoon with Lottie , watching film in bed chatting and catching up on everything, Tracy is going to pretend that I m on a round the world trip when she is work! Loved that, I am on an adventure just a very different one, different to anything I ever thought I would cope with or do.

I asked Lottie if she loved me she said, No,  little madam! Love daddy? I asked,? No she replied!  nannie? Granga? NO she replied, I LOVE MANDY , I asked her why, mmmm maybe because I love my Mandy,. How sweet is that! Maybe she has been brainwashed in my absence! But she always has loved Mandy, she is very special after all . I must make an effort to become no.1 again lol

Mum Dad and Mandy came over Sunday night, just like normal kind of evening, was all laughing at Lottie she was being a real show off, excited we were all together again! They left and Keith put Lottie to bed, along came the sleeping marathon, should have got that sponsored for my charity stuff! 8pm till 5.30 am the next day , longest ever for me lately, Keith woke me at 10pm for my tablets, threw them down my thought, thought he was a nurse for a bit, and I was still in hospital, it was really odd feeling, but brilliant when I realised I was home.

Monday 28^th Feb

Loads to do, need a new wig, hair falling out, called Bex, need to the help and support, going to town to check out the shop Nat found out about for me! Thanks Nat

Went for blood test with Mum, had test not too much of a wait went to shop when waited for Keith, bought mum and Mandy a present hope they like them, only little but would buy them the world if I could after that the last two weeks, and a few other people too, too many to mention I would have to win the euro millions! Can’t believe how amazing people have been!

Saw Auntie in the shop next door, was amazing to see her, huge cuddles all round.

I put on my brave face and went in, so much in there, had a look around. We explained the situation and what we had in mind, She couldn’t have been more helpful, trying things on, what to use, how to clean it, etc etc, found the perfect one, same colour as mine almost exactly!

We laughed so much, is it right to be laughing when you are going completely bald? We just were so excited this shop was so close to us, and we didn’t know it was there!

AFRO ELEGANCE, HAIR AND BEAUTY STORE www.afroelegance.com 7 the Arcade Letchworth 01462 676140, its not open every day so check before you make a trip but well worth the trip, lots of hair pieces etc too to add to your hair, amazing, should have had some before now!

I will def be going back, maybe today to see if there are any others I want, there was a fab wavy one, reasonable prices too, could be like my new handbag addiction, a wig for every outfit ! lol Keith will be pleased! I ll get a new one for Lottie’s birthday party, need to get on send out invites, already spoke to some of you, its going to be amazing! Want to make it a birthday to remember for us all! So will need a new wig for that! Cheaper than a hair cut as my auntie pointed out! x

Names the new wig, Posh, all wigs going to be after celebs, so Posh can keep Cheryl company! 

Came home excited but could see may hair pouring out, thanks Bex for trying to cover it up but by the evening no one could hide that with a flowers/hairbands etc!

Went back to hospital for results, lots to tell, Lottie was amazing good girl, so proud of her. He was brilliant, neutrophil up to 1, would like it above 1.5 but we have till wed to get it up and its gone up every day, no temp, no illness, brilliant!

The xray result was there.... deep breath... Lenny had shrunk already! Wanted to scream and dance! I Haven’t seen Keith that happy for weeks! The best news ever, we didn’t think we would get any indication of that till after the chemo, couldn’t be happier, do one Lenny, your time is up! We don’t want/need you, never did, bye bye! Round one to me! Bring on the next chemo, all seems worth it now !

Also there is a drug I can take next time to boost my WBC (white blood count) and neutrophils so this may mean I don’t go neutropenic again and would avoid the hospital stay! They cant do it on your first cycle but can do it next time, it involves injection after chemo but they can come to my house and do that for me every day next week following chemo. More good news

Its called GCSF, it stimulates the bone marrow, and boost WBC and neutrophils, amazing, becoming a lymphoma guru! (loved that one Sally)

The Doctor used those magical words again, very treatable and responding well! Its reduced in size already!

Saw Lynne, who said I looked amazing, thanks sweetie, really needed to hear that, Hair was really worrying me x

Back to lister first thing Wed 2^nd March for blood test to see where we are before chemo Thursday!

Went to the car with a huge smile, had a text from Dan to say meeting had finished and to hurry up and  offered me tea! Blimey must have Cancer, he never makes a brew! Lol

So today is my day off! No bloods only tablets !  

Went to work, so amazing to see them all logged on like normal day! Laughed with Tracy and Keith, my work mum arrived for a cuddle and the girls, told Tracy no fuss, and she kept it normal for me, NO TEARS just happy smiles please, I m not dying, I just got a few things to fix and I ll be back!

Had a chat with everyone, Dan made me a drink, warm milk, hilarious really as I usually have black coffee ! Dan even made a few more drinks! Wow! Work drinks to wish the lovely Gillian good luck as she is leaving, hoping to make that one on the 10^th if I have my injections I may not go neutropenic! Keep your fingers crossed for me!

So thats work sorted will tick it off the list! Got a lift home with Tracy like old times, Lottie loves her car, beige beatle, love that car!  Went in to my baby girl, waved Tracy off! Lottie blowing kisses! How cute.

Hair was looking ropey, called Mand on Skype, needs to come off, we agreed, and honestly is one of my rules for this rollercoaster trip. She came over, Keith got out the clippers, felt sick, Decided to let Lottie watch, less of  shock, she can help, she laughing, we all were, Had to take the scissors to it first, see what it will be like when grows back int he summer, not bad, thought would hate it!

Number 8 first! You could see the baldness and patches! Number 6 next, hair everywhere, Good job Keith cuts his own hair! He nearly expert been doing it for more than ten years, he was brave to do mine though, Love him.  Went on till we cut it to 0.5! had a bath and mum arrived, she was great, no tears, we laughed a the relief my head wasn’t a funny shape!

Skped the family and friends, really laughing, put the wig on then pulled it for the big reveal! My fav reaction was cous Col, WOW! Looked like he went back a metre! He liked my head shape too! Aunite loved it too!  Cous Emma and K looked shocked but pleased! Rocking the bald look! Lol then Damian and Lisa, Das aid we could be the new Mitchell brothers, he has a 0.5 too! Bex and family loved it too! Felt good about it which surprised me ! Showed my Daddy, burst out laughing, we both did! Hilarious, should i be laughing! Keep saying that but I found it funny!

Put some pics on facebook, get shock value out of the way! Can’t wait to go out with my Carla today, first outing, need a serious dose of confidence boosting, I ll have to have wetabix! But seriously I got to do this, first outing, then it’ll get easier, wish me luck for today

Oh, my fab news, venue for charity event confirmed, lots more too, Toms fund raising at £400 today running half marathon for chemo unit, please support it, they save lives there, nothing more precious than that

http://www.justgiving.com/Thoams-Barnett

that’s my rather long blog, just one more link theme tune of today

I got the poison, I got the poison
I got the poison, I got the poison

I got the poison, I got the remedy
I got the pulsating rhythmical remedy
I got the poison, I got the remedy
I got the pulsating rhythmical remedy
I got the poison, I got the remedy
I got the pulsating rhythmical remedy
I got the poison, I got the remedy
I got the pressure, the pressure

http://www.youtube.com/watch?v=j1D2wnm5zPk

Have a good day everyone x

INVINCIBLE

Baldie! its only hair it will grow back,  things could be worse!  keep smiling

really tired so quick post, had a fab and long day, new hair , new wig, new shaved head to finish the day, all came out in clumps so time for Mr M to shave it off, laughed all the way, more pics to follow and an update with all my news from the last couple of days , best news is £378 for Toms run and the chemo ward at UCL , well done Tom, you a superstar, more fundraising to follow soon! should I be this ok about having Cancer, going to stay positive

today's theme tune http://www.youtube.com/watch?v=M7TfkJdfqzo INVINCIBLE! thanks gregs x

first fundraiser, for the chemo unit UCL

 AMAZING NEWS! sponsors needed for the first phase of the Lyddon Merryweather fundraising team!

The first fund raising commences,just two weeks after I was diagnosed with Lymphoma,
this means so much to me, I cant describe how much and don't want to go all weepy so will stop there!

A kind chap called Tom, who will be running the Eastborne half marathon on the 6th March to raise money in my honour for the chemo unit at UCL which treats Lymphoma and will be treating me for me  Chemo over the next 12 weeks, I return there next week on the 3rd March.

Its totally brilliant and kind, thank you Tom, please log on and sponsor him, it only needs to be what you can afford, the target is £500, please help support the fantastic team and work they do there!and show Tom how much we appreciate the support he is showing

Good Luck Tom !

http://www.justgiving.com/Thoams-Barnett

The FEAR good fear, FOR EVERYTHING A REASON!

Sunday27.02.2011 6.15am, captains log. Hours of isolation driving me crazy, may have to cause a scene like Hilda today just for the fun of it! Its bit like prison, keep my things tidy can’t control what I eat or drink, but it’s all for my own benefit and I don’t want to complain only look forward to getting home to my little Merryweather, wonder how she is this morning.

Good news story today, time to celebrate a whole night’s sleep, only just woken up, I consider that a victory, stick that Lenny, i m sleeping again!  And through shouting coughing and general loud odd noises from the ward outside! Think the chemo side effect of being seriously tired is kicking in, yesterday was thinking what can I do when I get home, now thinking I just want my bed and to sleep ready for Round two of the big fight next week! Need to rest those little neutrophils!

One job is high on my list, MY HAIR, its coming out, like when you wash it and some falls out, but this time more than you would like to see on your pillow or in your sink, so time to shave it when I get home maybe, or hang onto it for a big longer and style is out with a few headbands! Good job I have a lot of hair to come out!

Really need to get another wig before any clippers are taken out of their box ! Keith can shave it, does his own hair all the time, he’s a professional as Nan says ! Off to the shop when get home then bed, it’s a deal! Oh and a new case for hospital, can’t borrow Mandy’s forever and seen a fab one with camper vans on it! Oh and some new music for my ipod and then maybe I will rest

Keep thinking about our holiday booked for July, found some picutres from last year on mums laptop! Hope its as nice as last year , we can make it extra special this year and I ll have a new collection of hats for the beach!

Theme tune is set for the day Ian Brown THE FEAR – this is my phones ringtone ! amazing song! http://www.youtube.com/watch?v=f9wue5sCpuM

Ian Brown - F.E.A.R.

F.E.A.R.

For each a road
For everyman a religion
Find everybody and rule
For everything and rumble
Forget everything and remember
For everything a reason
Forgive everybody and remember

For each a road
For everyman a religion
Face everybody and rule
For everything and rumble
Forget everything and remember
For everything a reason

You got the fear
You got the fear
You got the fear
You got the fear
You got the fear
F.E.A.R. (You got the fear)
F.E.A.R. (You got the fear)
F.E.A.R. (You got the fear)
F.E.A.R. (You got the fear)

Final eternity arouses reactions
Freeing excellence affects reality
Fallen empires are ruling
Find earth and reef

Fantastic expectations
Amazing revelations
Final execution and resurrection
Free expression as revolution
Finding everything and realizing

You got the fear
You got the fear
You got the fear
You got the fear
You got the fear
F.E.A.R. (You got the fear)
F.E.A.R. (You got the fear)
F.E.A.R. (You got the fear)
F.E.A.R. (You got the fear)

(Fantastic expectations
Amazing revelations
Finding everything and realizing
For everything a reason)

F.E.A.R. (You got the fear)
F.E.A.R. (You got the fear)
F.E.A.R. (You got the fear)
F.E.A.R. (You got the fear)
You got the fear
You got the fear
You got the fear
You got the fear

PERFECT!

FOR EVERYTHING A REASON, FANTASTIC EXPECTATIONS
AMAZING REVELATIONS

I can listen to more calm songs today must be feeling more calm, slow/sad songs were not helping another triumph today, stick that Lenny, 2:0 to me!

Keith coming this morning and Tracey this afternoon and then Mandy and Mum, and then maybe just maybe home, or maybe one more night! At hotel Lister, got a list of questions when that doctor comes round! They must hate coming into my room!

More info before Chemo next week for my fund raising, few more jobs to do but then the just giving pages will be set up, need to speak to my committee first about setting targets etc watch this space!

Lennys letter! and new blog design launch!

Saturday, been a good day, saw mum and dad, miss my mummy and daddy can’t wait to be home and be able to see them whenever I want!

Nan came to visit today and the Lovely Mr and Mrs Ellis

Lenny had his first card today, 56 cards in total now and I m claiming Lennys as mine seeing as he is squatting in my chest!

Card reads as follows

“Lenny, By the powers vested in us we hereby serve you a four month eviction notice, Please vacate the premises within this time frame or further action will be taken. You have over stayed your welcome, not that you were ever welcome.

The Tuminator as you already are aware is a major fighter, You have already lost , Just give up now. Cease and desist orders issued by the teamlyddonmerryweather supporters

Mr and Mrs Ellis”

Really made me laugh, thanks guys, always so good to me, the ice lolly was a treat too, really nice on my sore throat!.

Mr McCalla arrived, they gloved him up and an apron, must have thought u were germ ridden H, no one else had to! H was shortly followed by the lovely Miss Penman, with lovely milky drink treats too! And a promise of a shopping trip, cant wait to have a  girls fun day Penners!

A promise of some music arrived by text from Mr G, but the list was shocking, a real mixed bag, makes mine look good! Lol only Kieron liked it but he is in the same gang (40 age bracket!) and it pains them both to admit it!

I decided that everyone visiting needed to draw a picture on my board

Votes later for the winner? I ll try do a vote on the page tomorrow!

Secured a venue for the big charity bash, so excited rang Emma and Mandy to tell them! Bit too excited so had to tell them I would call them back, so many ideas, need to have a meeting with Mrs Lane  when I return home with us and the fund raising committee!

Really likes Claire’s idea last night, a pirate night out, then we can all wear a scarf/hat out and I wont look the odd one out!  Brilliant idea, maybe we can turn it into a charity event!

Keith coming tomorrow, can’t wait to see him again, Lottie been a good girl today, had lots of fun with Auntie Mandy and Nannie, still has a black eye, glad I m not there to look like I did that to her!  Miss her more than I can say, wont dwell on that as I will only cry

No news on my neutrophil count, maybe tomorrow Doctor said could be a day or so more, need to get home, I m too busy for neutropenic arrangements!

Mandy and Tracey came tonight, cheered me up,  had a laugh at Mandy’s expense, apparently she fell over on the mud outside and nearly did herself an injury, maybe she could have ended up next door, on my ward! Could have had some fun on a Saturday night in ssu!

I must say how lovely the staff are here, they really are, they deserve more recognition for the work they do, I couldn’t do these 12 hour shifts and listen to the upset and distress that I m trying to pretend I can’t hear!

Big news story is the new blog design, thank you Jo, a real superstar, can’t wait to look at it a bit more in to it when I have some more time, so much we can do, especially now I have my own designer! The page is so more like my style, bright breezy and happy, thank you again Jo, a real star as always

Anyway need to sleep, need to look my best for My Mr Merryweather tomorrow x

todays catch phrase! If its not positive I m Not Involved!!

Saturday day 4 trapped again in isolation for my own benefit I know, trying to think of it as a bonus, own room, a VIP, special treatment, but what I wouldn’t give to get up and walk about , getting cabin fever in here. Time for the ipod therapy, Music makes me feel better, need to update this ipod when I get home, tunes getting boring, I ve put them on shuffle for a variety! Lucky dip time!  Theme tune today is back to my hospital one, you don’t wanna spend the night round here, listened to this over and over last week! Imagining myself fighting and in a pimp wagon shooting Lenny!

 http://www.youtube.com/watch?v=GLfEU5lelUM

I see no point in living life that right, so I just take what I can find.
I see no point in living life that right, when your out here in this jungle.
It's wild round 'ere, you don't wanna spend a night round 'ere.
When your out here in this jungle, aint nothing nice round 'ere, troubles what you find round 'ere.
When your out here in this jungle, in this jungle.
Your always caught in this struggle, in this jungle .
But you keep asking for trouble, you love? You love when trouble comes your way, your way, your way.Fell asleep really early, sorry if missed any messages, calls and cous Emma, see you today hopefully, missed your text as was asleep by 9.30 ish hence why I m awake now a t 4am!  Can’t wait to get back to my super king size bed!  This small single just isn’t cutting it! And to do my nails, and make makeup and clothes, hate pjs, , look good, fell better I say!  Cant wait to be home and have a bath, no shower here and not allowed out of the room, just a wash! Lovely! Just like a prison cell hey! They probably have a better room than me, this is the doghouse, was like a penthouse in London!

 I need to stay germ free! My neutrophils are low and they are your foot soldiers for your immune system, they return to a normal level by themselves, so get a move on! There isn’t anything I can do to give them a boost but wait! Maybe I need a neutrophil coach to get them in shape! Like Mr Motivator! Hence why I wasn’t allowed home, couldn’t blog or talk last night much as was a misery, sorry for taking it out on you mum, you know I don’t meant it, Love you always

http://www.wisegeek.com/what-are-neutrophils.htm

Mandy and Claire tried to cheer me up, googled hair ideas/ bald cover ups! bandanas/scarves, ways to tie scarves etc ready for the ‘fall out’ hair is thinning, hat is at the ready to come home in but lucky I have thick hair to start so maybe it will hang about for a bit longer, just listening to  http://www.youtube.com/watch?v=o5mKAgb5px0  ironic again! Is someone trying to upset!whip my hair! boody shuffle setting! Well you wont upset me,  I m fighting again today, you won last night but \I m back up and ready for you Lenny, the Bailiffs are coming, pack your bag you beast! You need to leave ( thanks Andrea love that one!!)

need to go shopping, new scarves hats accessories needed! That’s a bonus right, a new wardrobe of accessories, will have to go home sell a shed load of stuff on eBay to make a pot of cash for all this stuff! After chemo I m going to have a huge clear out! Had a look for a short wig to keep Cheryl company would like, a cut like my new one, really like this short hair thing, I can use Cheryl for nights out and the short one for popping out, as Cheryl is a bit long and hot to wear! Short maybe easier!  And scarves for at home as the wig is itchy already and only wore it for a matter of minutes!

This neutropenia thing is harder than I first anticipated, the sore mouth, ulcers gums arrangement is seriously mean, just as I get my appetite back you take away the ability to eat , thanks Lenny, you really are a royal pain! Now that’s Ironic Miss Alanis Morrissette!

http://en.wikipedia.org/wiki/Neutropenic_sepsis

Diet http://www.livestrong.com/article/116654-neutropenic-diets/

So many limitations and that’s just one site, I’ve been doing my homework!

 Have been trying to think of things I can eat ,ice cream, angel delight, milkshake, requirements are to be part of the diet that you must follow the rules and not eat things that may upset your immune system,  but is limited when in hospital, need my own fridge freezer, can’t wait to get home to make my own food choices, the nurses are great here, can’t drink tea or coffee still so Milk is my saving grace at the moment , got a few great suggestions for soft food to fit in with the diet requirements Keith has filled our fridge and cupboards after visiting yesterday. Mum bought me an ice cream which was lovely! Really want a McDonalds milkshake, vanilla! Keith’s mum had those when she was neutropenic and now I see why!   hope I make it out of  here by Monday I need a few days at home before the next battle, got chemo Thursday need to be in tip top condition ready for the ‘hangover’ to start again! And to spend some time alone with my family.

Got my fighters name, but me and Jo aren’t sure how to pronounce it

Jo Scott 25 February at 15:14 Report

i think your fighter name should be Aceso Traceo :)
http://en.wikipedia.org/wiki/Aceso

Aceso - Wikipedia, the free encyclopedia

en.wikipedia.org

Aceso (Ἀκεσώ) was the Greek goddess of the healing process. She was the daughter of Asclepius and Epione, sister of Iaso, Hygieia, Panacea, and Aegle.

Share

Jo Scott 25 February at 16:35 Report

hehehe!
only trouble is i'm not sure how to pronounce it. i was saying it like 'Ace-o Trace-o' but i think it might be pronounced more like 'ass-air-so' with 3 syllables.
could be TrAceso... (trace-air-so) :D

loved that Jo, made me laugh yesterday!

Anyway got my fighters hat on today need to get better to get back to my spingling girl as GG says! Need to get myself a dressing gown, like fighters one, with Team Lyddon Merryweather on the back! Lol, wish name wasn’t so long, going to expensive bet they charge by the letter! Bad luck, should be used to that!bad luck and disappointment been a bit of a them lately!

Need to get home to my bed too! And Ping, least he is off next week so if I feel better we can have a bit of fun before chemo, what to do! Just want to be with him and Lottie, maybe a day out if I m up to it everyone else will be at work, so thats why I was upset about not coming home for the weekend, wanted to spen the time with mum dad and Mandy, after chemo Iwill trapped at home again so can see a few of your smiling faces people! But only germ free visitors! Maybe I can invent a deep cleaner to walk through as you enter the Merryweather household! Like something out of a film!

 That’s my first million pound deal sorted, it’s like fools and horses, this time next year we’ll be millionaires Rodders!!  More millions to follow, we will be in Penthouse by next year Ping, you’ll see, we can turn it around, Lottie will have the best of everything and Mum and Dad and Mandy, treats on  me and my millions! Headscarf thing is my next idea, venture, some for young people! I don’t want to wear something for grannies!

don’t you know I m the incredible healing woman, mum says so, was home after a day after my c section when i had Lottie! Feel like getting dressed today but not sure the Doctor will approve he will think I m trying to escape after my tantrum yesterday! Yeah I had small paddy, few rants and bit of stomping around, gave  myself a good talking to and 31 minutes on the naughty step!

The strong,
The mighty. The forces of evil can never destroy,
The power of the wonder man,
And although the most formidable journey lies ahead,
Only one will pro-vale,
Wonder, Wonder, Wonder man. (Wonder man)

Uh yeah, these haters couldn't get to where I am with a full tank of petrol,

http://www.youtube.com/watch?v=HvFZJFf8S6Y

Good them tune, wonder woman though, haven’t had a sex change, been in hospital a while and will be bald soon but that’s a step too far!

I m over the tantrum now J got the fight to get back to, no time for tantrums, more fund raising business to get back to, had the afternoon off yesterday to make way for a tantrum, cross about that, and could have been getting organised for the hundred jobs I need to do before chemo ,Round 2 of the fight! Need to get this grant sorted hopefully for a laptop as cant borrow mums forever, as then I can’t speak to her over Skype etc , think is time for the lists, head is full of things to do! Must get them all written down! More books, more lists, this is like a full time job! Although I did prefer being a mum and my old job! Miss work, mad isn’t it,  the people element, was supposed to go to see them had it all planned, outfit, new hair to show them, I thought I can do this, show them it won’t beat me...then along came the N word L spoilt that too, never mind, will have to show off Cheryl instead!

Fantasy bashy, on the ipod,

http://www.youtube.com/watch?v=o3ymcjblGro&playnext=1&list=PL74AEBC39EC9B36D3

·          if its not positive I m not involved! Love that statement going to keep saying that one that one today!  Howard, reckon you would love that,” things only change if the mindset changes”, “one team ONE DREAM!!!” we need a few new ones, that’s your homework H!  Its 5.56, been ranting and goggling links for hours, need t get on now and get up and try think about what to eat... and wash my hair before it departs on its vacation, because it will be back! Like Arnold Schwarzenegger !

Cancer for dummies :-)

Treatment plan

How this things works! And I get rid of this squatter ! I never gave you permission to grow, so do one Lenny I m a bit too very  busy for cancer don’t ya know!

When I was in hospital I thought I could write a book, the control freaks guide to cancer, The tumournator, Cancer for dummies, the day after tumourmorow!

 maybe this blog will start it for me

Maybe I need a fighter name, to go with my boxing gloves from Fluff!!

 like Beyonce, Sasha Fierce! Maybe I ll have  Suggestions please! Running out of ideas, think I m burning my brain out!  

But I am learning to slow down, I m still 100 miles an hour, but this time I m more focused and feel like it’s a worthwhile thing to invest in. Things seem very clear!

I have a plan, everyone knows I like a plan, to be organised makes me happier, and it’s my way to deal with it all.

Treatment plan below:

Before chemo, blood test , Wednesday 2^nd, at the Lister to check blood levels before chemo next day

Thursday 3^rd March up to the UCLH for 2^nd round of chemo

http://www.uclhcharity.org.uk/

feel free to look over the site, donate, sign up for charity fundraising, totally brilliant there, really looked after me, a brilliant team and one of the reasons I want to help raise as much money as possible for them and Lymphoma and Cancer charities this summer.

http://www.lymphoma.org.uk/

above link to the Lymphoma charity, light a candle, organise a tea break sponsored at work , charity change boxes or wear it purple on Lymphoma awareness week  12-18 September, our anniversary week to, I ll be pushing this and would love some help its easy to do too! Buy a t shirt, or anything from the shop! T shirt for race for life, only £3!

We all know what we  are fighting , mine is aggressive, grows quick but reacts well and should go quick! Big isn’t bad like I first thought, as the beast was 18x10x8 cm! In my chest! No wonder couldn’t lay down or breathe!

http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Lymphomanon-Hodgkin/TypesofNHL/DiffuselargeB-cell.aspx

had my bone marrow result yesterday..........ALL CLEAR, will be celebrating tonight with a glass of milk, or something as equally exciting, mouth is sore as have ulcers another side effect!

My cycle is a three week cycle, so chemo every three weeks, first one done giant tick!

Then they want me to 4 cycles, so 12 weeks then they will scan me to see what’s happened, it could be all gone, taking me to the summer to recover and maybe have some radiotherapy that’s the result I want not thinking about anything else, I ll deal with the first 12 weeks and get there first!

So back to next Thursday! Next chemo session at UCLH, 10.30 3^rd March

 First I ll see the consultant again first to see how I am then the chemo drugs, Keith coming with me

then start the chemo, on a drip, will be quicker this time, all 5 in one go

I m on R Chop

http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Combinationregimen/R-CHOP.aspx

side effects below! Just a few! Will have a bad week but least I m an outpatient this time, will get to come home on the 3^rd March, and be ill for a week or so, until I get to where I am now the N word!

Side effects

v  Flu like symptoms, I had the flu anyway so who knows If I ll get this one next time!

v  Low blood pressure

v  Hot flushes

v  Low resistance to infection ( this is where I am now in the cycle)

v  Sickness ( like worst hangover u ever had x10)

v  No appetite , struggling to eat weird feeling too

v  Bruising, bleeding

v  HAIR LOSS, the big one, not there yet can take a bit longer, so far it’s still there!

v  Tiredness

v  Sore mouth ulcers( got them now, really painful) L

v  Hungry from steroids! (ironic when you can’t eat!)

v  Taste changes, for me it all tastes like poison, this gets better after week or so, so bit better now but last week water tasted terrible!

v  Numbness and tingling had that in my arms and legs and feet!

So after this terrible list and week of feeling like a bag of spanners, I ll feel bit better but will be waiting to go NEUTROPENIC!  

Need to look for the signs and call my nurse, she advises, and will result in a few days in hospital ( this is where I am in my cycle now!) very pleased I recognised the signs and got in will know what to look for next time

http://en.wikipedia.org/wiki/Neutropenia

I ll have a few antibiotic IVs and be better and come home when my blood count returns to normal,

My result was 0.8  a count of 2.5-7.5 x 10⁹/L is a standard normal range

Once mine return I can go home and they need to be ready for the next round of chemo! Which is Thursday, and we start all over again!!! That’s the future for the Merryweathers for 12 weeks, now you all know as much as I do, the whole cycle/ treatment plan, hope I’ve answered all the questions, sorry haven’t been able to answer them but been a little bit busy with cancer and neutropenic sepsis, now I m feeling bit better I wanted to get this straight for myself ,family and friends, thank you again for all the messages/mails, texts ideas for fundraising, flowers, cards, presents, totally overwhelmed still, not sure I deserve any of it, the niceness that it, Not sure what happened to deserve the Lymphoma either but stick with him for now, until I can kick him out, he didn’t get permission and I don’t think he knows who he is messing with, I m too busy for all this illness , going to turn it all round for the best summer ever, when I have a good day I will be making the very most of it, Doctors orders!

Few jobs to do first, get a grant to buy laptop so I can stay in touch with everyone, Mum lent me hers so cant Skype her while I m, here, but I think I can fix that, fingers crossed, then  back to fundraising!

J

Thank Crunchie its friday!

I m up early again but not as early as yesterday


stayed up late emailing fund raising etc, had another IV antibiotics at 12, slept through it was so tired!
more frips today and if I m a good girl I can come home with more oral antibitocs, least we know what to expect next time, as this will happen every time after chemo so we will be ready for the N word !
need to repack my emergency bag, smaller would be a start, packed too much! but I m a girl thats a given right!


Hope my fundraising pages will be up at the weekend, so keep an eye out want to smash the target but not sure what to set as the race for life target?? may do a vote!


been listening to my ipod since 5.15am, found two very good theme tunes, to get me in a friday state of mind


http://www.youtube.com/watch?v=wjoQEckfDeQ


in a mood for a dance off now, Gregs? Mand? H where are ya when I need ya hey! get over to the lister ASAP!


feel so much better today I ll be dancing when the doctors come in, that will freak them out! cancer paitents shouldnt be happy right, well I am, I dont want to be like everyone else!

Enough already, onwards an upwards!

Apologies for being a little more miserable today, its the isolation part of being nuetropenic that does it, its so hard to handle after the week I last week, being alone isn't my strong point, anbd just want to run for the door!


anyway, been busy, fund raising all day, emails, calls and research, put some links up to some really great stuff, please try help, if you think you can let me know, I really want to raise some serious money this summer, a real positive thing can come out of the terrible week my family and friends have had.


Fingers crossed for the boys bike ride, Have emailed and asked we can take part, hope to be able to post ways to sponsor and full info for the weekend


the girls are doing race for life, I ll get the info and page sorted out and then we can hopefully get things up and running and get a confirmed arrangement for the party/fun day after the race where we can have some fun and rasise some money!


Being in isolation drives me mad, want to run out the door! having Skype helps, means I can see you all in your pjs and makes me feel better about being in mine!


was supposed to be catching up with work today and saying bye to the lovely Gillian, best wishes sweetie, mail me all your news!


Should be home tomorrow if the blood count is OK, home for the weekend would be great, got lots to get sorted out, and its chemo next week on Thursday, Skpying Lottie is great but nothing beats a cuddle!


Lots of people have asked for some info on cycle/drugs and just the way it all works, was hoping to post it today with links etc but had to be on a drip longer than I expected so it will have to wait until tomorrow


thanks Mandy and Mum for coming over today, now rest up! you both need it more than I do!
x

continued Feb 11th, the dark day

just had another iv of antibiotics, more to follow at 10pm, Mum and Mand have arrived , got some company yippee!

thanks Sal for the bits today, Milk was great, have a sore mouth so cant eat or drink too much, so lived on the rich teas and the milk, life saver Sal and the other 'aquired!' items! lol

where was I want to finish this story, its a bit like therapy......

We took the call,we were outside waiting for the PET scan, the Doctor said she had my results but wanted to check I wasn't alone, knew it wasn't going to be good when she said that, I said just tell me I can handle it I thought, its Lymphoma, thought must ring Keith, what about Lottie, they need you to go to London now, to stay and start chemo right away, Shite ! must be bad I thought, tears upset and emotion followed, Super sis stayed calm, spoke to the specialist, wrote in my precious book,  called Keith, heard bike crash and dont remember the rest of the calls I made

I m looking at the precious book now, Dr Lambert, and a mobile number, still lovely neat writing Mand, you are so good to me, huge letters at the top read TREATABLE!  Well done Mand, superstar sister as always.
It also says drive there, we didn't, we went to station, parked filled my case with stuff, as much as could get in there,  and tried to walk up the road, I felt terrible so as we walked, Mand saw cab station, wait there she said I ll find out how much, 35 quid, right, lets do that, you cant drive into London Mandy I said, good job too as were were shell shocked in the car, calling family, camt remember what I said there either, probably  best I don't
rememebr Cous Emma being super brave but have found out it didnt last! well done Em, for keeping it together for me, Love you

Mand continued to be super powered, we arrived and I told Keith to stay with Lottie, make her have a good day, they said treaable, lets see what the Consultant says when we ge there, you can come up aftger she goes to bed, dont let her see anyone upset. Do some make or cakes or something, Sent Da round to check on them, what a good one he is.

Went in and it was lush, really new, clean all the things I didnt expect, then the troops arrived, so many of them, must be something terrible

followed a list of misery
its cancer, Lymphoma, its got bigger since we scanned and you may have b symptoms so we must start chemo ASAP
No more children, No more hair, its just hair, ok I like scarves and accessories

I said, its ok, I got perfect first time, have you seen my baby Lottie she is amazing, no time to harvest any eggs, and my heart broke inside really.

so much info, papers, people, things to do, it was mad but they were brilliant,, Mum and dad arrived, bone marrow test needed, needle in the hip, they can all stay I said, I cant do it on my own, not after last weeks biopsy through my chest

started preparing a shcedule, for people to stay over the room was huge, massive, with sofa, they said dont worry someone can stay with you all night everynight, you can come and go if your up to it, down to shop cafe etc, started to think we cna do this, easy, only a few drugs, wont be alone, Lottie can visit, she ll like the tv and she loves the train!

wrote mum a list for stuff for Keith to bring back in the morning, Mandy was going to stay, we were supposed to be staying together, was supposed to be radioactive for the scan , and Lottie knows all about that, be fine, can see her tomo.

I started to feel more poorly, think I have the flu I said, had to have a test, if positive then I need to eb isolated for the other paitents cant risk the infection, i m sure it will be ok I thought

Keith arrived after a funny night, we made the most of it, laughed giggled etc Claire came to meet us, was odd as all seemed ok, I m sure they wont remember it like that but I do
Keith arrived, what a relief, Mand and Claire left for home, then the results came..... the flu

off to isolation, no one can stay got to do this alone.. I can do it I thought, but not seeing Lottie, I m tough, I can do this! gave myself a talking to had the first sets of chemo and felt ok, dont they know I m the amazing healing woman, had c section and went home the next day, I ll show them!

Along came a tumour... then the family and friends

Got a bit of time on my hands today as I m Neutropenic and stuck in isolation
I ve become a lymphoma expert over the last two weeks, since they threw this all at me on the 11th February

the story so far

I was sue to go for my scan, PET scan, but  I vwas very ill, like flu,got up just about, after calling mum and dad to help me couldn't move! cant really remember it all, remember thinking, maybe this is it, and saying I give up, can't do it mum, sorry about that mum, wont happen again, PROMISE!!

 Mandy arrived and we decided to try go for the scan anyway, got in the car and slept the whole way to Mount Vernon.

I called my consultant  and left a message, said not sure I can be scanned feel so ill don't know what to do, whilst waiting for the scan I fell asleep, we were delayed by about 2 hours, as they had a few problems with the PET scan, Told my sister Need some air, so we went for a breather, turned our phones back on to get a voicemail from the consultant, well two actually
First one was
 Please call me back, we have the biopsy result
the second was, call me urgently we need to admit you.... today!

Panic upset and all those emotions ran through me an Mand, she went into brilliant sister mode, work more, right lets call her, see what she says, get the book, we can write it all down , don't panic

will continue after my drip, just on my antibiotics! bloody neutropenic episode, don't u know I'm a bit very busy for all this!

Hilarious Horoscope - I m not somone to be messed with! todays theme tune!

Hilarious Horoscope today, they will think I m going mad in here laughing to myself at 4.59am
just read the following:

Looks Like you don't realise just how much charisma you possess, Gemini, When you turn on the charm no one can resist! but until now you put your success down to luck. Not so, its actually down to your unique personality. Start using your amazing gifts to turn a situation around

Hilarious, feel like I am turning this pants situation around, focused on raising loads of money! fund raising links will be updated by the weekend, need to complete a few things first, will do that today whilst stuck In here!

Instead of family day trips out,bit of shopping ,drinks with the girls, fun with Lottie and nice dinners with Mr M and baking this summer I will raise money for the fight against Lymphoma. I ll still do all those other things too as they are what I enjoy, not very exciting I know but they are me!

This year Charity is the Main focus,followed by FUN after getting better of course! but as Jo said I don't expect to make a full recovery I demand it! friends that know me know how demanding/. high standards I have,So I m afraid Lenny Lymphoma doesn't stand a chance against me! Do you know who you are dealing with?!?! lol

Music always help me when I m hospital, must listen to some more adult music, NDubz, shhh dont tell anyone! Keith hates my music!  shhh

 todays theme tune below!  need a dance off where is the gregs and mand!
 go listen to it! http://www.youtube.com/watch?v=F8GUPLQjuXY

Watch me while I stand here
Watch my feet, my stance, my body language
I'm not someone to be messed with
I'm a boss on a mission
You know you're challenging the best here
It's gonna be real hard
But I'm gonna be okay
As long as I try real hard
I'm always gonna find my way
I'ma find my way

I'ma stand up like a soldier
I'ma get them 'til it's over
I'll keep marching to the beat
'Til there's bruises on my feet
:-)

I get up when I want expect on thursday when I get rudely woken by the ... couhging spluttering and noise levels in the lister ssu!

Thursday must be my unlucky sleep day, its just like last week, woken up by someone/something else!
coughing, spluttering, general not nice noises from outside the room, again I m isolated, but would rather that than be on the ward with the illnesses etc, and Neutropenic means no germs allowed, so need to get better and get outta here asap! place is crawling with germs!

I feel ok todayu, its a bit like flu again, running nose, bit of headache, the hangover again fromt he chemo, but feel like this all the time and need to get used to it as its going to be the cycle for the next 123 weeks until they scan me to see if Lenny has reduced in size

Cant see Lottie, too many germs here for her to catch and they dont like little people on the ward, thats what they said last night, will ask again today for advice but ifn they think its too risky for her I wont see her, she is far too precious and its only two days maybe three and I ll be home, will skpye her over breakfast, she is getting used to seeing me in the computer screen

forgot a few things from my emergency bag, will re pack when I get out of here, first is my moisturiser! really cross about that one !
Also not bothered about makeup and thought I would be, I ve changed!
Good job my hair is short, looks ok this morning, no need to stlyle, could get used to the shorter hair, far less hassle, but I m trying not to get too attached as it could all go but maybe mine wont, maybe I can style it out for a bit, maybe it will thin and a few patches, gotta have some luck! hoppe I keep the eyebrows and eyelashes too!
Need some visiotrs today cant leave the room again, trapped here, germ free people only were the orders last night! looking forward to my top jester Mandy coming after work, she is the best sister EVER!

Cant enjoy the beautiful flowers that arrived yesterday from Mort and Miss T :-( least my house looks lovely and will when I get home for the weekend, there is nothing like getting home after you ve been trapped in a prision cell sorry hospital room, need to get used to this,going to happen very cycle( three weeks between chemo)

Cycle is chemo every 3 weeks, next one 3rd March in London again, will stay under their care for the chemo, but easier to come here to be neutropenic, not so hard to get home from either when you feel like a bag of spanners! and hopefully can see more people if closer to home

mmmmm what to do its 4.30am! going to be a long day isnt it, cant do anymore internet shopping, funds low! lol x

The N word!

well, knew it was coming, only gone and got neutropenic, well impressed with myself saw the signs early, even the cake and tea with laura and sarah didnt side track me, I knew I didnt feel well, time to call the CNS, advice to go to accident and emergency, thought I might get away with coming home, no such luck
Lenny the Lymphoma wants to stay here, bloody nuisance !

Keith wanted to have a swear box, everytime someone says neutropenic they put a pound in!

I ven got mums laptop , which is great but means I cant speak to mum through it, hope it works tomorrow so I can skpye Lottie over breakfast, she will get cross with me if I keep leaving her wioth Daddy, she told me today we have had fun this week bless her!

I told her I was off to work, think Mand explained I had to see the doctor again, miss her already, even the loud shouting abuse!

Had a good day today until the temperature rose and felt odd, least I know what to look out for next time, plus I m glad I didnt listen the best rest insisters, as I ve gotta rest now and would be feeling even more fed up!

Lottie cant come on the ward again, so if I behave maybe I can break out early again!
or somone can break me out!

In a side room in A and E, they trying to find me a side room on the ward, because I have to stay away from germs, its a bit like being a VIP!
Must pack a smaller more essentials bag when I get home, think I ve gone a bit overboard but was worried incase I got stuck in london again, least I can have visitors here, hope my hair doesnt fall out when I m here,havenmt got my hat or my new wig ( Cheryl I ve named her!)

anyway its 23.02 need to try sort my stuff out, and eat something, really hungry, what I wouldnt give to be at home
two nights and I ll be back, I did 8 days this will be easy peasy! x

Busy Busy Busy while I can

Woke up too early, my own fault, can never get back to sleep once I m awake
laptop broken, wont switch on, great!
mum dropped hers off to borrow and cous Emma to the rescue with the netbook, what a star!

text Mrs B, good luck today, thinking of you both and cant wait to hear the news!

went to see GG, had breakfast there, lovely, slowly being able to eat again which is great, Emma popped by too and made it feel very normal today, thank you Emma.

Some idiot smashed my ma in laws windscreen in, people are mean, one more thing to fix, and whats the fun/point of it, never understand that stuff, and never will

Picked my cousin Col up for some lunch and a lovely present arrived, looked beautiful too, thank you girls, really cheered me up, shared few chocs with Col and will pamper myself later, really kind and thoughtful, so thank you

Colin really cheered me up, sorry for a few tears Col, I m ok once I've seen people once, so promise it wont happen again, nice to see some familiar faces, and feel normal, Lottie just loves uncle Col! he is a bit too much fun!

New bobble bottle arrived last night, must recommend them, filtered water on the move, Thanks Mrs Barber for the tip off, we ordered them what seems like ages ago now, got a green one!

More lovely cards arrived, thank you Mort and Miss T, and my sisters lovely card, made me cry but in a good way. and tap too. all these kind words make me feel overwhelmed every day, I just dont feel worthy.

thinking about the good things that are happening today, Mrs B is having her twins, cant wait to hear about her day, having little people is so magical although painful and emotional!

awaiting two special visitors today, more tears and tissues at the ready, but hopefully laughs like normal, want to run a few titles for the book by them, along came a tumour, then the family! The tuminator! the list goes on, maybe I can do a vote later, this blog stuff is still very new !
thank you to anyone that has sent me a lovely message, I m trying to reply to them all but got so much to get through, 1600 texts messages last week havent counted emails or facebook so promise to get there soon as I can but computer error didnt help!

anyway back to fundrasing etc been very busy will have to update u all tomorrow, looking for sponsers for a few events etc, watch this space.......next world peace and all endangered animals to protect, its a long list/job but I have some time on my hands now inbetween my three week chemo schedule/being the best mum possible and wife and sister/daught/cousin/friend !
:-)

Reminder- they expect me to make a full recovery and certainly intend to !

Woke up so happy with the new hair
Really thought I would be so upset but I love, so quick to get ready in the morning, and then thinking I need a short wig, hope I can hang on to this hair do for a while!
please dont fall out too soon

new day, new hair, new me, need to sort out my wardrobe and feel a bit of fraud as feel OK today, still have hair, better hair than before chemo! I have been to the shop, got a few new hair accessories and then to see the in laws for a cuppa, and to Mrs Lanes for girly catch up, then back to mine for girls fun time with the new kitchen and kiwi :-) made a nice tea and managed to eat a nearly complete dinner too, I can only take each day as it comes, if I OK then I ll be up and about, If I feel ill I promise to stop, lets face it soon as I m ill I moan so that should be easy!

making the most of feeling Fab today, its the orders from the CNS, clinical nurse specialist, and said to remind the worriers that they expect me to make a full recovery, fast growing, high grade tumours may grow fast but that means reduce fast too, and I am the amazing healing woman after all! and they have caught it quick thanks to my moaning over the last 6 weeks, so everyone needs to have some fun, those are my orders, planning a nice weekend with my mum and sister, that's what we normally do, I want to treat them , lunch or something, leave it with you girls!Mum don't fancy bowling! If Lottie gets her way it will be us all making rubbish with glue and sparkles and I think we have done enough of that lately!

Lottie gave her self a black eye so we are terrible parents today! but she did have fun and go out and see Zara and invite her to her birthday party

anyway bit very tired so need a sleep, seeing gg tomo, will sort her out some washing to do to keep her out of trouble and hope to see my cous and Laura and Sarah, fingers crossed I wake up feeling as good as I did today

:-)