Thank You Tom

Update !

A few snaps of the hero from Sunday, Toms Eastbourne half marathon! hope you arent in too much pain today Tom a plan a more relaxing weekend this week.

We Just wanted to say a massive thank you to all those who sponsored Tom for the Eastbourne half marathon on Sunday, He completed the race in a time of 1hr 49 min 49 seconds. fantastic hey!

and raised a huge £1090.10!

Had a lovely email today from Mr Barnett  too

"Really enjoyed the race and it spurred me on knowing I was doing something for a good cause. Am glad was able to help. Really overwhelmed by the amount we have managed to raise – a great team effort!"

I didnt do anything Tom, it was all you!  thanks again x

Listen

Monday 7^th March

Had a lovely Sisters Sunday, went out on our own, sorry Lottie, big girls only, wander and some lunch in St Albans, thanks sis, you are the best, really lovely morning and home for a sleep, and a film, perfect Sunday happiness!

Brilliant news to start to a Monday morning, Toms Fund raising reached an amazing effort and total, beyond all expectations! Total now standing at £1080.10! thank you again Tom, a real hero, I m sure the UCLH are just as happy as I am, when I started this journey I didn’t expect the support I’ve had over the last few weeks, it’s all still overwhelming and won’t ever be forgotten, pics to follow soon!

Got ready, had a bath, and was shocked when I looked in the bath after I got out, didn’t remember shaving, then I realised, it was the hair from my head filling the bath, least it’s not long clumps now, just short spiked ones,I made that decision too, not you Lenny ! Note to self come payday need a few hats its so cold when you get up/go to bed with no hair, how do these boys have these short hair cuts! I m cold all the time!

First day of Keith going to work, wish he could be here all the time, But two special friends coming over, Uni girls! Only part of our bunch but very pleased to see them

We were incomplete today, without Jo and Kel but it was amazing to see them and meet Harrison too! Felt broody but not sad, it was lovely to see the girls, had some laughs despite the underlying sadness that is in the background at the moment, and hope to be able to see them all together very soon, fingers crossed that Neutropenia doesn’t get in the way!

Keith went to work and mum came to help me, don’t really like the thought that I can’t do everything I used for myself but I will get used to it and its only temporary, it could be worse, it could be forever, so no dwelling on that! I won’t allow it; I have a nice roster for helpers in the mornings until Mr M returns! We do need to sort something out, Lottie can’t go to nursery it’s a giant germ fest and I can’t be open to these germs with my rubbish immune system, really need to get so much sorted out, head hurts thinking about it all.  I Will add it to the list !

Have had some tumour pain today, well aches etc, think its Lenny getting his head kicked in so kind of makes me happy if that sounds odd!

Mandy popped in for lunch as was working in Letchworth, then Keith arrived, so only a few moments alone, phew. Mand went off to work and we had a little rest, Keith took Lottie to the park so I could rest, hard to sleep yesterday as so much paperwork etc to complete but tried my best! I have written a list and will work my way through it this week

Mand arrived for her normal Monday tea time; we took Lottie to McDonalds for a treat she likes chippys and milkshake! And she had been so good a real star all day! She really is growing up! She loved the baby too! Really gentle, mummy was proud of her. We went to the baldock services, so we could try and win a toy for her as well, no such luck! Bit cross we always win, but not this time, but have to admit our luck has changed recently!

Lottie went to bed when we got in, told me to tidy up! I don’t think so love! Instead went for a short walk round the supermarket with my mum, was really nice, silly I know but something normal! Came home in time for an early night! Life on the edge!

It has been a hard few days this weekend, some difficult decisions and news for 2 different close friends, and my cancer/Lenny will not get in the way of me being there for either of you, you know who you are, and I m still your friends, with r without Lenny, two very different problems, but both huge, love you both, please don’t feel I can’t help/talk things over, I want to help you both. Enough said, but we are a strong bunch of girls! But you already know that, text/call me anytime, I m home, with tea and cuddles long as you are both germ free! Or we can skype, it’s the future!

Went to bed with an itchy head! Hurry up and fall out hair, driving me crazy, had a bath before Keith left and more hair came out, but not enough!  Dad coming to help me today, got a few jobs for him! But he likes it, and it keeps me and him happy, he will be busy and I will get a few DIY jobs done, he can have lunch as a reward and Lottie is very excited about granga coming to play. lovely doctor calling today, must not forget. Then Mr M will return and it will be nap time again, I see a pattern developing here! I do like a routine!

Looking forward to tomorrow’s special guest Mrs Ellis, we always have a laugh even when we were at the hospital! So a busy week, then I’ve pencilled in neutropenia for anytime after Thursday as its most likely to happen on day 7-10 after chemo, hoping it arrives Friday or sat so i don’t miss seeing the gang from work on Thursday after work, keep your fingers crossed, it ruined it last time! But that was day 10 after chemo, so maybe I ll be lucky, but luck isn’t my thing at the moment!

Sisters song today ...for you Mand, sing it loud on the way to work!

http://www.youtube.com/watch?v=y4gimHC7fKs

Race Day £925.10 Run Tom Run!

Today is big race day for Mr Tom! Good luck, run Forrest run! Total this morning is at a huge £925.10 blooming brilliant, pics to follow from my official press photographer!

Good luck Tom, you don’t know how much it means to me and the charity too, thank you so, much, I’ll have to stop there as I  don’t want to cry x

I ll go back to yesterday instead,

I woke up around 6 today, even when I wake up I still  feel so very tired but cant sit here again, we are off to Woburn wont be too much, only sitting in car watching a few animals and Lottie loves “mamials” as she says, and I only get the weekend to spend with Mum and Mandy, as they have to carry on with work, so I intend to make the most of the time we can spend together

We packed up the car and off we went, Girls day out, Me Mum and Mandy and of course Lottie, she was excited as we have been before with the Lovely Mrs Brunger!

I wore Cheryl, it was freezing so could wear a hat too and was hoping it would be less obvious I was wearing a wig, we wouldnt bump into anyone we know there either , fingers crossed

We drove around the park, Not sure if Mandy or Lottie were the most excited member of our party! The animals were on top form, they always seem to move about more and walk past the car in the cold, the giraffes stampeded past the car and across the road! Lottie was very excited and wanted to sit on my lap which was lovely! We saw, the rhinos, zebras, bears, lions all sorts, Lottie loved it!  We drove around the monkeys to try and get them on the car but unfortunately only saw them on top of the other cars! We decided we would go t the craft fair and come back for another go before we left

 We had some lunch and then went for a wander, into he craft fair and the first thing we saw was a charity stall for Lymphoma and Leukaemia, they were local group from Hemel, we decided we had to buy something, so had a go on the tombola and bought Lottie a frog, my prize on the raffle was shampoo, really made me laugh won’t need that for a while, then I won a calendar s we gave them back explained we just wanted to help out as its a cause that we feel a lot form they were lovely ladies and I got their card and will contact them to see how I can help them too. They couldn’t believe Cheryl wasn’t my own hair and asked about my condition, saying non Hodgkin’s etc had the best possible prognosis. I haven’t considered that I won’t be ok, it’s starting to dawn on me that people don’t see it the same way as I do, I have to be ok, No other option.

We took a further wander along, looking at the other bits and pieces but my ,mind was somewhere else, tried to shake it off so we could enjoy the day, we have had enough terrible upsetting days later I want to make the most of the time I m not in hospital or asleep.

Lottie saw a stall where you could paint and make, there were some lovely coloured sands and you could fill up a plastic shape and make a necklace, she was sold! We picked a star necklace and she filled it up very well, looks very pretty she wore it all day! And painted a blue racing car which we could collect before leaving for home!

Next on Lottie’s agenda was the penguins! “peng pengs” we wandered off the weather was lovely sun shining really beautiful. We found the pengs and a few other animals and I was getting tired, but stumbled across the parrot show, they were flying around and around, Lottie loved them, mouth wide open! Then one flew past my head, had to duck, think that parrot was after Cheryl and my hat, that was close we said!

Off to the shop and Lottie was bought a monkey for being such a good girl, thanks Mandy and Mum, you do spoil her but she is more than worth it. We had a really nice morning, but time to sleep for me, slept on the way home, so did Lottie! Before that one more trip to see if we can get a monkey to jump on Mandy’s car, we drove around looking for the cheeky ones, already on the cars, finally one leap on the roof and slid down the windscreen, Mandy was most def the most excited! Lottie wasn’t sure she liked it! Then we looked over to see some naughty monkeys doing things on top of another car, we were hysterical as the people in  the car had n idea about what those monkeys were up to! Until they saw us laughing pointing!

 Got home for a rest and then lovely Tracey popped in for a cuppa after being up the road sorting out her new house, can’t wait to see how it’s going, bet its fab it was last time I saw it! She showed me how to open he beautiful chocs she sent, me and Keith had been struggling, we must be tired or something! Or they were too fancy for us! x

Me and Lottie got in our pjs while daddy went to get some dinner, Skpyed Mum and Dad and Mandy and Auntie and then went to bed! Being so tired is rubbish but better than some of the side effects last time. I do feel ill first thing and food is odd, tastes funny or makes me feel sickly but the tablets are working, I need to be careful and take each day as it comes, can’t really be alone for much time at the moment not with Lottie, but have the covered with a plan for next week so each day I have some help before Keith is home at lunch time to rescue me. It won’t be forever and then I can have my independence back please I hate replying on others I DO IT MYSELF, Lottie’s catch phrase will rapidly become mine!

Saturday Shampoo

Sleep sleep and some more sleep

This seems to be the future, so tired, woke up early yesterday, and went back to bed after a while and then two special friends came over, cheered me up, then went for another rest

GG came over to do a few jobs in the afternoon, may have to get her cleaning every week, Keith took Lottie out for some fun at Monkey business. Wore her out, came home and she was very tired and hungry! Good work Mr M

Feel better this time after chemo than last time, no appetite and feel sleepy and up and down that was to be expected. Lots of tablets to take but that’s not a problem if they keep me well.

Sis came over and took Lottie to Mum and Dad’s so could try and rest/eat with a little peace and quiet, Lottie has a new catch phrase, “What’s that mum?” what’s that?” and pointing, cute but exhausting! Especially if you are tired anyway!

Lottie came home and looked very happy, pjs and went to bed with lots of stories from Daddy.

Checked the fundraising to cheer me up

Our boys bike ride up to £75 , please sponsor them! Think of my dad on a bike, and the cycle helmet that’s worth a fiver of anyone’s money!  And he hasn’t been on a bike in years, training programme to follow soon! Trying to think of something they could do so we can see them when they race, maybe purple faces! Fancy dress if they will let us dress them up!

http://www.justgiving.com/Tracey-Merryweather

Toms half marathon up to 900! Big smiles!!  Good luck Tom you are a star!

Me Mandy and Mum going to take Lottie to Woburn today, to see the animals, resting in the car, will take my pillow! Will wear the wig I think, it’s so cold today , then Daddy can take a day off, he is back to work Monday after some seriously long hard three weeks, been a superstar as always thought, I m very lucky

Looking forward to going out today, change of scenery, and the day with Mum and Mandy, Like normal sat, but not quite as I m a tired baldie!

Roll on payday been expensive being ill!  Still nothing changes, waiting for payday is normal right, and at the moment normal seems very appealing!

Keeping it in mind that Prof Linch said 80% of getting Lenny kicked out after 4 cycles and this is the second so I m a the half way mark, but worried about how tired I ll be by the end he did mention “feeling somewhat beaten up” by the end I think I can see what he means now, but I m the incredible healing woman, I won’t be beat! Not by Lenny, I’m already winning!

Got to get back to the fun life we had before Lenny made his ugly appearance, haven’t had a drink since Christmas! No dance offs or proper fun really, We have the holiday to look forward to after this, timed well, and we didn’t even know!  Can’t wait to walk down to the beach and sit sleeping by the sea! Think we will all need it by July. I’ll have to buy some big hats and sun block, can’t sit in the sun after chemo, just another rule to live by! Its a long list!

I hope I m not too tired today want to enjoy the animals too with Lottie rather than miss it asleep!

Have a good weekend everyone

special birthday song for Mr Styles today :-)

http://www.youtube.com/watch?v=QL15Ya5fsgo

Gold Dust

Round two started yesterday, up early almost keen to get going to kick Lenny out, the bailiff mean business, you’re not welcome Lenny! I know you have packed a few of your things are we saw that you had reduced but you need to take the whole thing and get out of town please, we have a good leaving party for you as no one wants to see you again, sorry sounds harsh but you aren’t very popular­, and don’t bother anyone else either, best you leave the county/planet universe!

First need to remember what yesterday was for my family, a sad day before round two, We all miss Uncle Phil, so much fun, he would have told Lenny to do one ! I feel like I was looked after yesterday as it went so well, reckon that was you Phil and maybe Granddad doodling something next to you shading with a few different pencils taking his time and drawing a few pics of the chemo lounge ! Love and miss you both, but enough as already tears while I m typing, Well done Auntie and cousins, sorry I added to the upset/worry yesterday .But he was busy as you got the house Emma and Kieron we turned it around yesterday. Cant wait to see the new pad. X

Yesterday I was up early, and managed to get confirmation of the boys bike ride to support the Charity at the hospital, met Sara yesterday and they seemed pleased, saw the total was at at £75, this morning, thanks for the sponsors, cheered up to see that today. As to be honest I feel shocking today.  

Our boys sponsor page for the Bike ride published! http://www.justgiving.com/Tracey-Merryweather

I got My Lottie ready, she looked gorgeous always does, Nannie arrived and she was excited about helping nannie for the day and waved us blew kisses at the station, least I get to come home this time back to her for a cuddle

black eye nearly gone!

Decided to work the scarf, figured be a few baldies there, and the wig felt more odd, scarf needed an outing, build some confidence up

We got on the train, Keith bought first class ticket, so we could get a seat and make sure we had one for  the way home, it was a great idea, read my magazines from Sarah thank you sweetie, saved them for yesterday read my horoscope again, made me laugh

Gemini 22 May to 21 June

“You are in the mood to throw yourself into some work and your optimism lifts the mood of everyone around you. Now is the time to put your imagination into work on a five year plan that suddenly seems really achievable”

Really made me smile I do feel a bit like, best think about this 5 year plan!

Arrived at Hospital early, found the building we had to go to for chemo as was different last time, then went to eat my last tasty breakfast for a week or more, not sure how /what to expect this time , as i will have to say bye to taste buds, its a side effect of the chemo, it will be back just in time for ulcers and before next chemo on 24^th March three weeks time.

We went to boots to get a drink, bought a new lipgloss too “called take a chance!”

We were there early but when arrived impressed, well organised busy but good. I was in to see Professor D Linch, we were really happy with that and although he was running later would rather wait and see him.

http://www.atthelimits.org/oncology/?page=bio&subpage1=davidlinch

We were clled in about 11.30 and felt nervous, he was brilliant,we had a list of questions at the end and end he was more thank happy to answer

I wont be taking GCSF this time, when i go neutropenic it should be as bad this time if it is then next time and becomes a problem we will but the side effects sound nasty so I prefer not and will listen to whatever his advice is

The big results

Chances of these 4 cycles of chemo getting rid of it???

.....................80% chance I could be in remission after this OMG better than I thought,

25 % chance of it returning, lovwer than I thought, another answer that made me feel better,

He confirmed it had reduced in size but at the end of the 4 cycles so in June I ll have a PET scan, the radioactive one, and that will show up any cancerous cells, they glow ! lets hope Lenny is gone by then! And maybe I need some radio therapy and I can get on with my life again!

We then went to phamrist, loved how organised it was, Medication all waiting for me, and then we were sent downstairs to the chemo lounge as me and Keith called it, lots of blue recliners in a room full of people having chemo! Quite relaxed with amazing staff that really know their stuff, we were impressed

Had the chemo felt tired but couldn’t sleep. Met the Sara about our boys bike ride, and thanked us for the sponsors. Told her a few of our plans got some posters to put up for the boys at work etc so will circulate those.

All done by 5.30, not bad will be quicker next time as one of them is harsh the Ritiuximab , they give it slowly in case of reactions. We left in taxi for station, nice to be going home, want to see Lottie, and Mum and Mandy and Dad

http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Biologicaltherapies/Monoclonalantibodies/Rituximab.aspx

Mum picked us up from the station at Hitchin, went home Lottie was snuggled up with Auntie Mandy, bug cuggles all round, felt really good to see them, they looked tired probably had a more tiring day than us, Mum def with Lottie! Had already given them the good news about remission chances  Mum will come with me next time so Keith can look after ¸glad she wants to come.

Skyped Cousins and Auntie, they were ok, wanted to see they were alright, even all laughed, they were all crammed around the computer, laughing at each other J

Had a bath with Lottie and daddy put her bed while I rested, tried to eat then went to bed slept ok but up at 4am today, will sleep later if I can.

Love you Keith, Lottie, Mum, Mandy , Daddy I m going to be all fixed by the Summer I feel it , then we can have our holiday, I better organise the car, hope it’s as cool as lasts years! Going to need that holiday Prof Linch said I will feel a beat beaten up by the end of the 4 cycles, wont take me long to get ready with no hair to do!

todays theme tune for my Gregs Gold Dust DJ Fresh, cool video too

http://www.youtube.com/watch?v=RNuUgbUzM8U sponsored skip anyone! ? lol

Round two of chemo today and charity bike ride launch

Quick blog today, as off for chemo to UCLH
Yesterday I had lovely day with the family, nice dinner in the evening, before I cant eat again! thanks Mum, Dad and Mandy and of course Lottie who danced naked with wellies on for us all ! A real treat! lol
last supper! might make it a tradition before chemo

Toms total now standing at an amazing £630.10, thank you to anyone who sponsored, good luck to Tom for the 6th :-)

SPONSOR the boys for the Charity bike ride
We have our Boys bike ride sponsor page ready! please sponsor my brilliant husband and Daddy and team of Best man Damian and Cousins Colin and Kieron and Dave

http://www.justgiving.com/Tracey-Merryweather

Round two today, off to UCLH for second chemo, not sure what to expect today but know I m in safe hands

Home tonight Hope Lottie is a good girl today for my Mum and Dad and Sis xx

todays theme tune http://www.youtube.com/watch?v=0NFV8dHrZYM
One Day Like this, elbow :-)

WHO AM I!

Wednesday 2^nd March, lots to do today a few things to catch up, will go back again to where I left you,

Found out that I m stage 2 this is good news, its not gone everywhere, we already knew it was going to be a better result as the bone marrow test was clear.

• Stage 2 More than one group of lymph nodes is affected, but all the affected nodes are contained within either the upper half or the lower half of the body. The upper half of the body is above the diaphragm (the sheet of muscle underneath the lungs), and the lower half is below it.

Could be worse could be three or four, happy with that result, we caught it early, one person to thank, one person who listened at the doctors that I wasn’t well that it was too painful and not getting any better, Dr Lacy, thank you may just have saved my life.  We spoke yesterday and she is brilliant, helping me sort out a few things, there is lots to do and I m rapidly becoming a lymphoma expert, the Guru as you said Sal! X

Going to have a penicillin allergy test as they think i may not be allergic and that way I can have a better selection of antibiotics! Asked Dr Lacy yesterday and having the first test today with my blood at the Lister this morning

More bloods today to check we are ok for tomorrow, ROUND TWO! Chemo at the UCL

I started yesterday with a list of things to fix, number one, be brave and go out in the wig, had just the right woman for the job, Carla, she was brave and offered to go out with the baldie, like a normal day, off to the shops for a mooch, she arrived and I was very nervous, she looked lovely, beautiful.  Went out said bye and took a deep breath, no tears brave face on.

Got to Hitchin and went for breakfast, watched the world go by and no one looked, we laughed and kept smiling, even felt like pulling it off in the shop and scaring the life out of someone, going to be a good trick! Someone will have to come with me for that one, it will be hilarious!

Came home and felt ok, but hot, not sure I can wear it all the time, Cheryl will be for special occasions, she is going to be seriously hot to wear out! Maybe I need a mid length one, and excuse hey, payday will be the next wig treat!

Home for lunch and a knock on the door, always makes me jump, worried about seeing people, hence why i loaded pics on facebook, there you go take a good look, less to stare at when you see me, it’s all gone and its only hair, it will grow back, maybe better than my old hair who knows, but who cares, it’s really not a big deal , I’ll get used to the wig and scarf and not be worried, already feels normal when I’ m home, just going out to conquer!

Beautiful flowers from a beautiful friend, thank you Nessie/Noodles x

Sorted Lotties bedroom couldn’t get in there for toys clothes and sutff!!

Looks nice again now one more job off the list ! it’s a long list not sure can fix it all before tomorrow.

We cleaned Lotties room together, and felt shattered, annoyed me, I don’t like being tired, but had to rest, it’s a side effect and will be worse next week, will have be more rested next week so wanted to do a few thing this week before total wipe out again. If I don’t reply to texts or calls it’s because I’m resting, I do try to reply, but you will have to be patient with me, I can only take one day at a time, which goes against my normal super organised planned self, but lots of things have changed lately, that is a small price to pay be being well again. I will catch up when I can, going to off till the summer so we have plenty of time x

Fun raising update, Toms smashing it for me with the run on Sunday

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

TOTAL today £590.10 amazing, thank you to all the sponsors, all Toms friends and family and of course you Mr Barnett! Superstar, drinks when I’m better, maybe I need a book to write down all the outings I m going to have after I win this fight!  Cant wait to tell them when i go back Thursday for chemo.

Went to supermarket to try out the scarf look, felt more worried about that one, its obvious I have cancer in a scarf but its more comfortable, what to do, front it out!  Like everything else, I ll be ok, going with Mum and Mandy and she will kill anyone who upsets me, I scared of Mand when she is angry! We went round felt ok, though who cares what are they going to say, excuse me have you got cancer, I would reply yes but i m busy making a full recovery thanks, no sympathy please I m just me, although i have asked myself who I am lately as I don’t feel liek me, feel like a stronger better me, which is odd considering Lenny has invaded and is busy squatting in my chest! Well Lenny, your times nearly up, so make the most of you comfy space before you are destroyed. Thank you Mand and Mum for being brave as always we did it, feel ok about it already, Love you both so much, i wouldn’t go out with you with a scarf on Mand, you looked hilarious but the face you pulled dint help! You have a beautiful face Mand, you would rock the baldie look, and maybe you should try it! x

Really spooky this morning, when I got up the Gregs has put a dance off tune on facebook so today theme tune can only be one thing

Beenie Man, who Am I, listened to it over and over this morning, weird Claire hey!  Have you been reading my diary! Lol

http://www.youtube.com/watch?v=WI-xQ7IksUc

Keith put lots to bed while we went out, came home she was upstairs doing stories, so I cooked special dinner me and Mrs Lane chose this morning, this isn’t just food its M and S food! As the tag

line goes! It was two dine in for £10 a proper dinner, can’t believe how hungry you are when you haven’t eaten well for more than two weeks, more like two months. Set the table, lit some candles like we used to on sat nights, looked beautiful! It was odd not buying wine but found a good alternative! Not sure I can drink now, need my body in tip top condition! Chose a Neutropenic friendly dinner, its not easy! I m ok now but thought best to be careful.

Then went to bed, total wipeout till 6am not bad hey!

Today’s jobs

·         Lister for blood tests

·         Doctors pick up paperwork

·         Bank to do more paperwork

·         Post Office to post some more paper! Too many trees! Not sounding very environmentally friendly!

·         Home! Get ready for tomorrow

Big question, what to wear! Scarf  or wig!