Wednesday 22nd August

Just had a call from my nurse with the results of my PET scan and I'm in remission...!!!!!!!!!!!!!!!!! PHEW!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I'll be told more on Tuesday at the appt. So glad she called and I didn't have to wait until Tuesday... !!

I have been feeling ok, tired and my legs ache and ache. I try and walk everyday, but It doesn't help! I've also started with cramp in my right foot. Hopefully I'll start driving next week.

I didn't have a good day on Monday, I spent most of the afternoon tidying and searching for my car documents (been looking for 3 months), up and down the stairs... well i over did it... and hours later my temperature started. We were at Dave's niece's 8th B-day party tea... and I had a thermometer in my mouth! It topped 38.5 in the end.. and eventually after some tablets it came down to 36.7... Dave and I were fretting as we thought we might have to visit the hospital. (Car document update... they were in a box in Dave's wardrobe!!!!!!!!!!!!!!!!!!!!!!!!!! 3 months I have spent looking for them!)

Dave has got some work now so I'm home alone for 3 days... I'm trying not to do anything...

I'll update more on Tuesday after my appt!

bye for now
Ali
x

Sunday 19th

Hi everyone,

hope you had a good weekend?

I met up with my work colleagues on Friday night for my friend Sophie's leaving do... my first night out past 9pm! I was knackered when I got home at 11pm....... nice to see everyone... and nothing had changed.... just me! Sophie had a good send off... her new career after 3 years at Uni is a Midwife.....best of luck Soph!

I'm back at hospital tomorrow for my hickman line flushing. I get my PET scan results on the 28th. Fingers crossed its good news. I have been feeling ok... eating lots...OOOPS. My sleep pattern is nearly back to normal and I have a few naps. The tiredness is the worst and my calves ache constantly. I have also been getting cramp in my right foot.

anyway I'll sign off and say good night.
xx

Monday 13th August

Sat having a blood transfusion in hospital. Been here ages as usual.

Been feeling ok since I was discharged. Lots of hospital appts keep me busy! Tomorrow I have a pet scan, fingers crossed the bit that's left is "cold" (means inactive).

X

Monday 30th july

Is going home!! After spending 92 days out of 6 months in hospital.....I'm going to enjoy a glass of fizz later. Treatment went well and I have lots of appts coming up but none that involve an overnight stay.

Thank you for all your support and messages over the last 6 months, Its nice to know i have great friends and family who are thinking of me. I'm looking forward to spending time with Dave and my family and most importantly recovering.

Bye for now
Ali x

Sunday 29th

Still trapped!!

My levels are going up!! Phew! They were 0.01 for 6 days, I'm pleased to say today 0.1!!!!! Let's hope I'm home Tues/Wed.

I'm glued to everything Olympics.... Finally something to watch!!! The TV aerial isn't the best though, lots of interference!!

I've had more platelets this week, hopefully my body will cope better now. I was feeling very low. I have started to eat..... Drum roll....we had Wagamama's last night. I have a stocked fridge, so I'm munching my way through everything.

I'll sign off

X

Thursday 26th July

Day 16...

its dragging... my counts are still not showing any sign of going up. So I won't be going home as I thought tomorrow. Instead likely Monday. I'm so bored but also exhausted. Can't seem to get enough rest as the nurses are in and out of the room today, so I decided to get up, showered and dressed.

The meals on wheels is going well... although running out of ideas of what to eat!! I've lost around 6 kilos again... due to lack of appetite from the chemo. I'm just hating this hospital at the moment. Even the cleaner had a good moan about the food to me... !!

Just got to keep it altogether for a 4 or 5 more days and then I'm free!

x

Monday Day 13 - part 2

Hi,

Another update:

CT scan results show a small amount of lymphoma still there but majority has gone. He didn't seem worried as he said most patients end up with a little bit left.

They want to give me a PET scan in 3-4 weeks which is a more in depth scan and possible liver biopsy just to check what's left. I'll also have a repeat CT scan in 3 months.

With regards to my hepatitis, I'll go back to seeing liver my consultant again. But I'll also be under heamotology who will be monitoring my blood for it flaring up.

I'll be coming in as a day patient for follow up chemo, just 2 sessions in August. I'll be having platelets today. My neutrophil levels are 0.01 today, so I'm not going anywhere just yet, they need to be 0.3!!!!

So good news, but before I open the fizz just want to see what the biopsy results are.

Bye for now
Ali
X

Monday... Day 13

I had my scan last Thursday, not sure on results as yet. Finally came off the horrible anti biotics over the weekend. I hope my stomach returns to normal. Hopefully I'll also have my hickman line taken out this week, I'll be able to use my jacuzzi bath at home now.

I'm 5% battery use on the iPad so I had better publish my post.

I've got a few more things to write about so I'll let this charge and log on later.

Bye for now
Ali
X

Sunday

I thought I should update....

Been in since Wednesday last week, chemo wasn't started until Friday. Since then I've developed a bug in my hickman line, my temperature has been sky high for 3 days.. And then up and down! I had a bit of a cold before coming which hasn't helped matters.

I'm just having 2 pints of blood followed by more chemo and I'll be on 2 types of anti-biotics until infection has gone.

I had to cancel visits from friends this weekend, just wasn't upto it. I have been running to the loo or being totally out of it. The doctor said I'm looking much better, which is good news!!

Bye for now
Ali x

Wednesday

Hi,

they have a bed ready for me.... going down later on... They wanted me to come in at 5pm... I basically told them to get lost and I'll be there at 7pm... you probably think this is harsh... but first night your always sat about.....

Bye for now
Ali
x

Monday 9th July

Not much going on until I get my bed on the ward this week. I have to start ringing tomorrow. I have been eating and eating... stocking up for the chemo weight loss!

I bought a new wig last week, very similar to the one I have but a little easier to style as the fringe is shorter. My eyebrows and eyelash's have all dropped out now. I bought a brow stencil kit to draw them back in.... Hopefully a few weeks after my next and final treatment they will start to grow back. I look very strange... I'm sure people must look at me and think... something is missing.......!!!!!

The weather has been dreadful so I haven't had any opportunity to catch some rays... Hopefully in August summer will arrive!

I hope your all well and not working too hard! Some great NEWS....My cousin is going to be running in the Great North Run, her training starts this week in Dubai... good luck Ang in the 42*C heat!!!! If you haven't seen the link on facebook here it is for you all.

http://www.justgiving.com/angela-rollinson0

Angela will be running for the Leukaemia & Lymphoma Research Charity based in London. They are a charity who fund trials and research on blood cancers.

http://leukaemialymphomaresearch.org.uk/

Please help us achieve a great total for the charity!!

Bye for now
Ali
x

Sunday...

Hi everyone,

Totally forgot to update my blog on Friday... I was finally sent home!!

Been shopping and trying to be normal over the weekend. My legs are aching so best to take it easy tomorrow. I'm also tired as it takes me awhile to get used to my bed.... and Dave's snoring!!!

Sorry this is so short... nothing much to update on...

Bye for now
Ali
x

Monday...

Hi,

still in hospital I thought today was sending home day.... sadly not.

Hopefully won't be too long. Dave and Shaz are still not well.... Dave has tried to get anti-biotics as its going on 10 days now. My mum came to the rescue with meals on wheels on Saturday. Hopefully normal service will resume soon. 

Wimbeldon has started so I have something to watche at least. My work colleagues have got the fund raising bug! They have set a just giving site let me know if you want the details to support them. They are raising money for Lymphoma. One of the events organised is "Strip Club", the boys are having there legs waxed!!

Bye for now
Ali

Friday

Hi all,

I've had a rough couple of days, but feeling better now. I caught a bug off someone, luckily 2 x types of anti biotics are clearing it.

Shaz and Dave have both been unwell this week. Dave's meals on wheels ground to a halt on Sunday. The nurses have been making me toasties, but today I'm so hungry, so I've ordered Dominies and Dave is coming for 5 mins, to deliver it upstairs to me. Feel like I've lost my right arm.

I've had to cancel other visitors this week incase of infection.

I've had my last chemo today in my spine, hopefully not too long until I'm home!

X

Saturday...

Escaped from my cell to Costa downstairs, lovely and quiet. Had my toastie and latte. I thought I should update as it's been awhile....

Nothing much going on... I've had 2 spinal injections this week, the next big chemo starts at 9:00am Sunday when I'll have 23hr drug flushed through me followed by a 12hr sodium flush to get rid of it on Monday. I'll be on the toilet most of the time.

My next chemo is a 5 min injection on Tuesday, then I have another spinal injection.... Then that's all for this cycle. Hopefully I'll be home by the weekend...but you never know!!!!!! I may be trapped longer.

I've had lots of visitors this week, most visits involved food!!!! Karen brought bahjis on Thursday and Sophie and Fiona visited Friday, so HAD to order dominoes.....yum yum!! Dave ofcourse participated on both evenings. I think this evening is Wagamama's!!!!

My colleagues at Gecko raised an amazing total for race for life, thanks to everyone who donated. We all have generous family and friends!! So far the figure is £2,500 and it's still climbing. I'll have to post a photo later in my t-shirt. They got me one, so that I can join them next year!!

Just bought Shaz and I tickets to see Paloma Faith next January in Leeds... Can't wait for that. But before that it's the Almighty George in Oct!!! Going to dye my 4mm hair, bright pink so he notices me!!!!

I'll sign off and pop back upstairs, told my nurse where I was going, but she might think I've left the building!!

Xx

Saturday/Sunday

Hi everyone,

My treatment started on Friday with 4 chemos, over the weekend I've just had one each day, tmrw I'll have my first spinal injection and then the rest of the chemo throughout the week.

I was very sickly on Saturday morning, my body getting used to chemo I think. Lots of anti sickness tablets now.

I'm very bored today, tv and more tv. Just started watching the tennis. I might also have a snooze.

Not sure what time Dave is coming today, he has been over supporting the Gecko Ladies. They did the race for life today (photos below) Sharon, Cousin Cooper (dog) and Matt also went along to cheer them on. Thanks again for your support, the total raised was well over the target!

My food issues have been ok, I have had M&S salads for lunch, then Dave arrives with a meal later on. We bought a great food container that keeps things hot for hours, as hospital is only 15 mins away, it's working out well. NO MORE HOSPITAL FOOD!!

I'll sign off and post this to the blog.

X

GOT A BED!

finally.

Just having beans on toast before we set off. I thought I'd post a photo of me in one of my new head scarfs....

Much more comfortable than the silk one I have. I'll post a photo later of all my "luggage" I'm taking to hospital... SO much stuff.. but I am going for 3 weeks ish!

x

Thursday...

Hi,

Still waiting for a bed for just over a week now, must be busy!! I have been buying satin scarves from H&M... great for covering up my peach fuzz on my head. My eyebrows and eyelashes are always falling out now. I wish I had taken a photo of my eyelash's, a before and after shot. I hope they grow back thick and long.

I still haven't seen "others" walking around.... strange! If I don't get a bed today. I'll be back in Jimmy's tmrw for my Hickman cleaning/flushing, I see "others" then ofcourse.

Today its cold and raining outside... so I'll catch up on TV today. Yesterday I had a visit from Shelley, we went to White Rose for a coffee, it was SO busy!!

Bye for now
Ali
x

Sunday...

still waiting for a bed. They are fully booked, so will wait until tomorrow. I have been cooking food to freeze for Dave to do the "Meals on Wheels".  My fridge is full of hospital "things" but as time goes on I'm going to have to eat most of it as it will be out of date.

Today I'll be mainly on the sofa... very tired today and just  can't get warm. I might have to put the heating on!!!

Have a nice weekend!

x

Thursday...

I had my outpatient appt on Tuesday, my liver mass is now measuring 7cm.. it was around 13.5cm... some of the other nodes I had on my liver have disappeared which is great news.

I'm currently waiting for the hospital to call to say they have a bed. Its that time again....I have requested the first ward I was on (89), as they were able to microwave food for me.. FOOD is important!!! I have also bought a food container to keep things hot for Dave to do his "meals on wheels bit".

I have started to pack and gather everything together. My first bit of chemo this time is the spinal injections.... OUCH! Not looking forward to those.

I hope some of you will be able to visit this time..

Bye for now
Ali
x

Monday...

Hi everyone,

hope you all had nice weekends in the sun.. it was HOT HOT HOT! We went to my mums at the weekend and then had Sunday night staying over in Whitby. Stayed at a lovely bar that we always go to called the "Moon and Sixpence". We had the top room.... LOADS of stairs so you need to be fit! I was knackered going up and down! The fog and mist on Sunday afternoon was weird... very eerie..... the harbour was covered in rolling mist off the sea and you couldn't see from one side to the other.

Today we have come back to Leeds and set up some new patio furniture.... please visit us soon.. we have lots of seats now!!

Tomorrow I have my hospital appt at 3:30, I'll give blood and they will let me know when round 3 starts this week... usually its 24 hours for a bed if my name is down. I was hoping to go in after the Jubilee weekend.. but its looking unlikely now. This cycle will be around 3 weeks as before. As my scan was good I have now booked our flights to Majorca for October... can't wait... lets hope I'm well enough! Something to look forward to. 2012 has been a right off in my eyes... I haven't done half the things I wanted to do this year. I guess 2013 will be a better year, well I hope so.. fingers crossed.

Well better go and sign off..
Ali
x

Thursday...

today I have had my scan results and I'm pleased to say my tumour has shrunk to half its size!!! Amazing.. the lymphoma has responded well to the chemo.. I'm half way through and very pleased. I'm back at hospital tmrw for my hickman line replacement and then next Tuesday I will have my out patient appt when I'll find out the next start date for the next cycle.

I'm feeling ok.. I have been sat out for around 20 mins to get some vit D, as the weather has been amazing. Every day I sit outside on the deck under the umbrella relaxing and reading. This week I was very sadden by the news of Robin Gibb, love the Bee Gee's, so many people affected by cancer and it does hit home.

I have been wearing my new wig, which is very comfortable. I feel confident wearing it aswell which is important. My major battle at the moment is my eyelash's.... They are falling out and are sooo long and weird!! I have gaps in places. I have bought some false ones... but trying to resist putting them on just yet.

As I have been going about my "daily duties", in town or shopping at the supermarket, I don't see any other "cancer" patients about...... ie people with headscarves?? Can't just be me?? Where is everyone? Are they either at home or just wearing good wigs??? I obviously didn't notice anyone before walking down the street, but now I look out for "others".

I'll sign off as very tired today. Had a lovely visit from two school friends Rachel and Sarah this evening. Nothing changes does it with old friends.... all at school in 1985... and we can STILL talk for England!!!

Night everyone
Ali
x

Tuesday....

its hot! hot! today.. tried to sit outside to get some vitamin D... (factor 30 on)! Came inside... its sooo bright out there! Used to my dark room at Jimmy's. The cats are rolling around and loving the decking.

I haven't done much since Friday... my legs ache when I do anything... not used to walking I guess. I bought a new wig on Sunday in Leeds.. human hair, so its sits on my head much better. The synthetic wig was very uncomfortable and didn't sit quite right. See photo below.

The new WIG

Going to have lunch al fresco today when my sister comes over. I tried to convince her to have chips... sadly we are having salad.

Bye for now
Ali
x

Friday...

Delighted to say I'm going home... 18 days, nearly beat the 21 days on the last cycle. I'm home for around 2 weeks, then back in kicking and screaming on 30th/31st May for round 3, if my platelets are ok.

I'll sign off and finish packing.

Bye for now
Ali x

Thursday...

Still here, had my CT scan this morning. Hopefully results next Thursday. The bloods aren't back today so I haven't a clue if my counts are going up or down.. 17 days I've been here!!!!!! Dragging, I need more visitors the next time I'm in.

Just been looking at a break away to Majorca in October, will be nice to get away. It won't be too hot for me either and the hotel I've seen in Pollenca is on the beach, so not far to walk for a swim.

I'll update more later or tomorrow.

Thanks everyone for their comments, nice to see friends and family are reading my blog.

Bye for now
Alison
X

Tuesday...

Still here, not predicting when I'll be let out now!!!

Had a lovely visit from a work colleague today, Lindsay, we chatted for nearly 3 hours.....time flew by!! Lindsay was very kind and brought me some food. Sophie visited last week with a food parcel aswell, I need more of these kind friends on the next cycle!!

Tonight the nurse has covered the panel in the door for me....Too much light shines in from corridor, even with my eye mask.....I have issues!! Finally a dark room!! Only taken them 2 weeks to do it.

I'll say goodnight

Ali
X

Monday...

Still here, bloods still not right. I've had a platelet transfusion this afternoon. Obviously my body isn't ready for home...

I enjoyed 'New Moon' last night, I hope BBC or ITV have something to watch this evening!!!

Bye for now
Ali
X

Sunday....

Still here, levels aren't up, so another night in my cell. New Moon
(twilight saga) is on later, if I was at home Dave would be sat in another room calling me a teenager, so best to be sat here.

Dave brought in a picnic for us earlier, quiche, salad, coleslaw, etc. ....yum. So nice to eat food!!!! Last nights Wagamama's was lovely.... Tasty!!!

I did watch the Grand Prix today, I fell asleep after, must have been too much for me!!!

Anyway.... "I'll say goodnight" (Downton Abbey saying).

X

P.S. does anyone ever read this blog??????

Friday...

Still here, having blood transfusion tomorrow as I'm slightly anaemic. I've had 3 meals today!! I'll finally put some weight on. Having Wagamama's tmrw eve when Shaz, Dave and Matt visit, just hope the takeaway stays HOT!!

Will sign off as watching "What lies Beneath".... It's a bit jumpy!!!

Bye for now
Ali
X

Thursday....

Busy day..... Not! Nothing done and nothing to do. It's rain all day in Leeds. I've eaten today....3 meals. My body will go into shock!!

Starting a day late tomorrow with the injections to boost my counts. I hope and pray I'm home Sunday for the grand prix!!

Just about to watch "Two Greedy Italians" it's so nice to see beautiful Italy on the TV!!

Night
XX

Pizza later....

Just been weighed and I've lost in a week.... Hope your sitting down... 5 kilos which works out as 11lb!!!! That's why I'm having pizza later.

Crazy weightloss in a week!

X

Tuesday

Sorry I haven't updated for awhile. My chemo spinal injection is now tmrw (Wed) so I have a day off today. Yeah
!!!

Had lots of visitors yesterday, my Aunt Elsie, Uncle Godfrey and cousin Steven, the Nadine popped in, Ian and Jo had a tag team visit as they had Sam with them downstairs, then Chas (aka Shaz) and Dave..... Busy afternoon.

I'm feeling alot better and trying desperately to eat some cheese and biscuits, but I just can't get into them.... Craving Wagamama's.... Maybe at the weekend. Yum Yum...

A few photos below, Dave in the fetching outfit whilst visiting me,
the other is a beautiful Rose my Uncle bought me.

Bye for now
Ali
X

Friday/Saturday.....

Not having a good time..2 nights of hardly any sleep.

On the chemo machines from around 10am-3:00am, I'm knackered and trying to sleep as and when. This morning at
7am I went for a chest x-ray, I had shortness of breath and a temperature. Had the temp for over 24 hours, I've finally been put on anti-biotics.

They are starting my chemo at 2pm today, hopefully they won't need to wake me during the night.

I'm going back to sleep now!!

Bye for now
X

Thursday...

Starting in 10 mins with my first drug, yesterday I just had anti-body top up. My dreaded injection in the spine will be next Tuesday... Yuck! I'll hopefully be up and raring to go home 4 or 5 days after that.

The drug that I'm on for the next 5 days have various side effects... confussion, blurred vision, hair loss (none left).... I have to have eye drops in my eyes to help my vision. This cycle is a little easier than the first, although the drugs are new for me. Hopefully I'll be ok!!

Bye for now
Xx

Tuesday....

No beds were available this morning, so I decided to start packing just in case.... (later on thank god I did!!)

I attended a make-over class at the Robert Ogden centre at the hospital. It was good fun and nice to meet and chat to other patients. Most had finished treatment. We all got a fab goodie bag, with around £200 worth of cosmetics in.... Very swish!! See photo. We were shown basics of cleanse and tone and discussed "skin" and effects of chemo. Typically whilst I'm sat there, my phone had a missed call...... the ward asking me to come in. Raced home finished packing and headed to Pizza Express for the last super (my last decent meal for awhile).

I'm on a different ward, with a fantastic view of Leeds. The most important thing is that the TV works and the Internet signal is good!! Got the iPad with me this time.

Night everyone
X

Going in...

Just had the call, going for the "last supper" at Pizza Express. I'll be on ward 88 this time, I hope I get a TV!!

Will blog later.

Xx

Monday...

No bed for me today..... I'll call tmrw.

I have a beauty day at the cancer centre for a few hours tmrw afternoon. Make-up tips and advice on wigs.

X

Saturday...

changed my blog slightly and included a photo of me taken last night.

I also want to add this link to mine - its another Lymphoma blogger in American who recently was interviews for Fox News. He is now clear of the cancer and taking one day at a time.. He wants to raise awareness.

Fox News Interview

I have watched 2 films this week that weirdly mentioned LYMPHOMA... I wouldn't have even given it a second thought before. Also watching the London Marathon LYMPHOMA was mentioned a few times... by an actor who has recovered and the other was the Lymphoma Charity who had an actor from Holby City running for them.

Hope your having a nice weekend? Had my mum and dad here for lunch... they were on a flying visit to fix the "amazing" shower. It was leaking into the light/fan... but all sorted now.

Bye for now
Alison
x

Thursday pm

I've had my appt at the hospital and all good with my bloods. I will start ringing for a bed on Monday I know there is a long list.

Going to chill out now with my mini eggs...

X

Thursday morning...

its raining again... will it ever stop!!!?? Cats aren't happy!

I'm sipping Sencha Berry Beauty Tea and eating Chocolate Creme Oreo's (addictive). I've been feeling sickly since Monday (Oreo's help)... and soooo tired. I'm trying to have a snooze on a afternoon but it isn't working out yet!

Today at 2:30pm I have my hospital appt to have my Hickman line flushed and then at 3pm I'll see my consultant. Hopefully I'll be given a start date for the next cycle of chemo.

I've had lots of visitors from work this week which has been really nice... I showed off my new wig and bald head.... not many people can do that in one night! HHAHAHAHAHAHAHA
 

I look similar to this (not)

 I'll log back on later and update what the consultant says.

Bye for now
Ali
x

Weekend...

Dave mentioned that I haven't update my blog all week......I haven't really much to say or anything that's interesting....!!!!!

I had my appt at the day clinic at the hospital on Thursday and had my hickman line cleaned and bloods taken.. my levels are up which is a good sign.

This weekend we went to Hebden Bridge for lunch and to a nice tea shop where I bought Sencha Berry Beauty... it's my second bag in 6 months.... its very addictive. I'm still searching for Sencha Champagne.... nearly 4 years on... the only place to buy it is Dublin.. so anyone going over????

Today we have been upto my mum and dad's for my dad's 65th birthday... (officially a pensioner!!) We had a quick walk on the beach, the last time I saw the sea was New Year's day (4 months is a long time for me to not to see the waves). It was chilly but nice all the same. After a lovely lunch that my mum had cooked we had a walk with the dogs around Preston Park near Yarm, it rained on and off. This time last year the weather was amazing in the UK and was around 22*C, as I had come back from Portugal and it was warmer in Leeds.

This week I've got loads of sky+ programmes to catch up on and have various work colleagues popping over for a visit. It will be nice to see them all. I'll be back at hospital on Thursday for my hickman cleaning and an appt with my consultant, I'll hopefully be told when the next treatment starts.

I've just opened an Easter Egg.... I haven't been into chocolate that much... but Dave is helping!!!

I'll sign off and show you a few photos I took today....

Ali
xx

Monday/Tuesday

Hi everyone,

I'm home.... I was let out into the community yesterday at around 1:30pm, i've been chilling out at home... the cats didn't make a fuss of me...  tut tut..

I'm back in hospital on Thursday into the day unit for a check on my hickman line. Not much else will happen until next Thursday when I'll see my consultant and my bloods will be checked. I feel fine and taking all the medication that they gave me..

That's all for now folks....

Ali
x

Saturday......

Hi everyone,

Grand National Day - I think this is the first year I'm not in a works draw for the race.. 

I have just been told me that my Methotrexate level is back to normal... praise the lord!!!!!!!!!!!!!!!!!! I can now come of the litres and litres of sodium flush that has been rushing through my tiny bladder and kidneys for the last week. I only need my Neutrophil level to rise now. Its currently at 0.15 and needs to be 1. I'm sure tmrw is the day... or Monday. My platelets are low and are currently 48, if they drop to 20 I will need to have a transfusion. My Hemoglobin level has increased since the blood transfusion, which is good.. and my advice to you all is ofcourse DONATE BLOOD, no excuse.. it doesn't hurt at all! I have donated over 23 pints since I was 21. Sadley had to stop when the hepatitis started.

I know I will have to undergo all of the above on every cycle of chemo that I have... but I will be mentally prepared for it all I guess! Been a bit daunting every day.. wondering what was happening next etc. I do have a schedule but not all the anti-body drugs are scheduled for each day. The staff have been great and we have had a laugh. I have heard that most patients stay in their beds all day and don't want to be disturbed...very depressing, but I guess people cope with things differently. I ofcourse want to know who, what, where etc. The staff here told me I was refreshing as I like to talk and discuss how I feel etc.!!! Anyway next time I will have more books, DVD Box sets and a better mobile broadband signal... although since a new person has moved next door on Thursday its been much better.

My hair loss is crazy... I don't know where it comes from... I must have a lot of it thats all I can say! 

Have a nice weekend!

Ali

x

Hair Loss Friday......

Hi everyone,

My Orange dongle for the internet has decided to work today... very odd..

My hair is now falling out... I could make a wig!!!! Huge clumps in the shower this morning. I know I have alot of hair and it's to be expected with chemo to fall out, but it is still a huge shock. My sister has ordered me some scarves and a cotton cap to wear at home and on the ward when I'm back in 3 weeks time. I think I will persist with it falling out until I can't stand it much longer!!

Today I'm still on the flushing out drip... nearly a week of it...UGH!!!!! Getting fed up with dragging the stand back and fourth to the loo. Keep everything crossed for me that my level will be 0.1 today!! As then it can stop!! I'm still having various anti-fungal drugs and yesterday had 2 pints of blood. Hopefully my own blood will be a little better today. My mouth is still sore (mainly in the morning) and I have been given various mouth wash's to use. One numbs the mouth and the other leaves a coating on the teeth and gums. Hopefully it will do the trick.

Yesterday I also had my last chemo into my spine for this cycle... hurt like hell!!!! My normal consultant is away, so his stand in, had the short straw. It was the most painful thing I've ever experienced... My nerves in my legs were going crazy and I thought I'd lost my leg it hurt that much.... I'm hoping next time my consultant is here...otherwise I'll be hiding under the bed!!!!!

I think thats it...

Bye for now

Ali x

Duvet Dave

Dave bought me a new duvet cover...do you think its bright enough? club tropicana...

Thursday's Visitors

This evening I had 3 visitors from work...Debs and Sophie and "Critch" aka Johnny Critchley-Salmonson. We laughed and laughed, just what I needed. Critch turned up with alsorts of goodies for me, and I just had to share with you all.... Alsorts were in the bag. Johnny leaves Gecko next Friday for pastures new at Heineken HQ in London, he will drink London dry!!! I think he will feature on "Made in Chelsea" soon, so watch this space. I will dearly miss him and wish him all the best. Photo to follow Xx

Thursday

Hi, My hair is starting to fall out, will be a baldy soon. My mouth is in agony as the chemo strips away the red blood cells. Hopefully one of the blood levels with be ok today so that I can come off the drip. This is the drip I've been on since Friday at midnight. Today I have another spinal injection...I think after lunch. Julie - curry nice, but they forgot the naan bread... Tut tut. Lunch today is a jacket potatoe with beans. I'm going to buy a cheap toaster for next time, I can keep butter in the mini bar. Anyway will sign off, starting to get very bored now, its my 17th night here today. Bye for now Ali X

Wednesday

Hi everyone, Got a signal, just a quick update. I have another spinal injection tmrw, hopefully levels will be good enough to leave Friday, if not Saturday. I'm exhausted after 4 nights on the continuous drip. 1 litre at a time plus what I normally drink. Not much else to report, having hospital food this evening, first time in a week. I have ordered a lentil Dahl curry. Bye for now X

Friday

Wednesday/Thursday/Friday Technical issues!!! I think a machine in either my room or next door interferes with the signals with the Orange dongle and my network on my phone. Exciting news... I got a new bed! Finally! Somebody was discharged last night. I had my second injection into my back on Wednesday, it went ok as they went into the same holes as before. I had had a small dose of chemo on Thursday and then my next dose is on Saturday. Tonight (Friday) at midnight until 4am I will be having a litre of sodium fluid IV'd and then again 8am-12pm on Saturday morning before my next chemo, then the chemo is IV'd. Apparently they will make sure before giving me the chemo that my kidneys are working, so If I go to the loo I have to meaure in a jug my urine... (I guess they need to see 2 litres!?!?!?!?!) knowing me I will be constantly in the loo! Dave visited yesterday as I'm still not at risk we went out for a walk-about and something to eat at the other end of the hospital. It felt like another world.... shops! Well only 2 and a hairdresser's! This place needs a Boots Chemist or a Superdrug... I know most people are here to get better etc. but it should also be about the well-being of the patients. As I have now been an in-patient I think there should be more for patients to do. My next gripe is food... just can't eat most days... fear of throwing up all the time, anti sickness helps and on Wednesday they IV'd me something new which they said would make me feel drunk... 5 mins after they gave me it .. my eyes were like saucers and I walked to the out-patients for my spinal injection.. i was floating... it was very funny. I did entertain the nurses! My hair is thinning.. always falling out but not in the clumps yet. Maybe a few moew weeks. My last chemo drug is on Sunday and then its wait and watch my blood levels. I hope to be home for next weekend as it's Dave's birthday on the 19th. Today I have a few visitors coming so I will try and finish my book before they turn up. Bye for now Ali x

Network Issues

Sorry I haven't updated for awhile....the network is terrible most days in hospital. Even the Orange dongle has issues. Will update more later when I get a better signal. X

Monday/Tuesday

Hi everyone,

today is a day of rest...... I had my chemo into my spine yesterday....not pleasant and took 4 attempts...... I have another one tmrw... YUCK!

The food isn't getting better... I have ordered a jacket potatoe for lunch but I think I will have to ask Dave to bring me a goodie bag of some sort... or pizza later. When my blood count drops I will become neutropenic, which means I can't leave my room and have to eat certain things and avoid others...even black pepper!

My next chemo IV'd is on day 8 (Thursday) and its Vincristine, the nurse mentioned its a tough one and I would need rest for a few days before having it.... I took a sleeping tablet last night to knock me out but I have trouble sleeping on the bed... apprently its not the usual bed for the room.. so I have moaned and complained and hopefully they will swap it soon. I was awake most of the night. I will snooze today as they don't need to bother me with tablets and chemo.

Anyway looking forward to the snow coming... will give me something to watch out of the window! My TV aerial is terrible.. who ever designed and built this place should have thought about putting a large antenna on the roof and then linking an aerial into all the rooms... instead of patients buying and relying on a portable aerial that you constantly have to move around the room for a signal... its terrible!!

Bye for now
Ali
x

Saturday/Sunday

not much going on.. very quiet over the weekend. I have had various chemo drugs today and yesterday, feeling ok today. I was feeling ill all morning yesterday and just slept. I had anti-sickness IV'd last night which may have helped me this morning.

Just waiting for my lunch... Veggie Moussaka today. The food is hit and miss. I haven't eaten much since Thursday, but have plenty to snack on in my "mini-bar" when I feel upto it.

Tomorrow I have a drug called Cytarabine injected into my spine.. not looking forward to that! Then the next week or so is repeating the pattern of drugs daily or every other day until day 15. I think today is my day 4 or maybe 3 as they were delayed slightly. On top of the drugs I have anti-fungal and anti-body drugs before the chemo drugs and then after the chemo drugs they give you a flush... which i think stops clots in my hickman line.

Anyway... i'll sign off and post this. I may have to get some fake tan in a can soon.... I'm so pale... not left my "cell" since Monday....

Bye for now
Ali
x

Thursday/Friday..

Hi everyone, My Hickman Line is now in.......and its been all go with the chemo. I was sick this morning and have now been taking anti-sickness tablets. Otherwise I'm ok and taking it in my stride, there is various side effects that come with each drug, the nurses give me various pre-meds to cope with these. They are brilliant and are always on hand.

Bye for now Ali x

Wednesday.....

Not much happening today, had a couple of things injected into my line.... Had Sophie visit today with goodies, then my sister and Dave turned up with my weekly shop!! I will have my anti-body drug tmrw and Hickman line is booked for 1:15pm. Finally got tv working.... But refuse to watch Jeremy Kyle!! I'm updating this on ny phone as the dongle on the laptop isn't reliable! Night night X

Finally on the ward.......

........."checked in" to Ward 89, bed 34...... so I will be here for awhile. The nurse said there is a waiting list for beds... so feel very lucky to be here.

Visiting hours are 2pm - 8pm which is good. Not sure what happens this evening.. I think I just get a tag etc. My Hickman Line is still planned for Thursday, in the meantime I will be having the anti-bodies.

If you want to email me my address is alison_hughes030@yahoo.co.uk

Bye for now
Alison

Elvis....

....in the sun... just had to share this with you all...

Elvis under a kids umbrella keeping cool in the sun! I found this in the woods ages ago.. I knew he would love it.....(Smudge was too big to fit under!!)

Still waiting....

for the call from the hospital for my bed on the ward. My BIG suitcase is not packed yet... I may have to get on and do that.

I had a lovely weekend with my friend Louisa visiting, although a short visit, it was worth it... and we giggled and had a good catch up. Lets hope its not another 5 years or so!!! Very greatful for her traveling up from Athens/London.

Here are some photos....

JUST DOESN"T WORK DOES IT... STATUS QUO MEMBER?

Waiting......

Hi everyone,

My appt went well and my platelet count and other bloods are fine. I'm a little anemic... but I won't be eating a steak just yet thanks!!!

I'm now on stand-by for a bed, I will be in earlier than I thought as they want to start the "Rituximab":


MacMillan def:

Rituximab belongs to a group of cancer drugs known as monoclonal antibodies. 
Monoclonal antibodies recognise and lock on to specific proteins on the surface of cancer cells. This helps the body's immune system recognise the cancer cells and destroy them. Monoclonal antibodies are sometimes called targeted therapies because they target cancer cells. 


I can be on this treatment before the chemo, so might aswell get in and get started, and then have the Hickman line fitted as normal on Thursday. Weirdly I was originally told to start ringing for a bed on the ward next Friday. Apparently its not always guaranteed when treatment would start after the Hickman Line is put in. But my nurse called me yesterday after the appt and the Doctor has checked the patient list for next week and has told me to expect a call before Tuesday. I'm eager to get in and have everything thrown at me for 2 weeks!!!!!!


My friend Louisa is en-route up the M1... hope they don't call today and ruin our mini-reunion!! I'll have to ask for a twin room!!!!


Have a nice weekend

Ali
x

 

WIG-GATE

This is what I have to deal with every morning... driving me nuts!

BAD HAIR DAY

Well here it is... I have tried to get it on my head as best I could.... Tina Turner eat your heart out!

WIG IS MUCH EASIER TO CONTROL

The colour is amazing. I might get it cut around my face more.

More Good News....

....had another call from the IVF clinic and we have 5 sound embryos going in the chiller.....always said I wanted a swim team!!! Had a lazy day to day...... which means I never got dressed....I watched Spartacus all afternoon that I sky+. Just had a shower and got into some clean PJ's and resumed my butt back on the sofa!!

Got to the bottom of the sickness.... the evil anti-biotics..... I just realised I was on the same in hospital, but I was given an anti-sickness tablet at the same time. I'll ask about them tmrw if I can swap to something else.

My good friend Louisa is visiting on Friday/Saturday, we were at Boarding School (posh prison) in Harrogate together for 5 years in the 80's and we had a mini-reunion in Athens in 2007 (I think!). Really looking forward to seeing my old pal!!! It will be just like we saw each other yesterday. I CAN'T WAIT!!!!!!!!

Dave just said I should update more often.... but I really don't think people want to know what I eat or don't eat each day.....It will be more interesting in hospital.

I'll say good night
xx

Good News......

........received the call from the IVF clinical embryologists this morning to tell me that I had 8 eggs removed and 7 were mature eggs (whoop whoop) and that the ICSI (which is pronounced ick-see, stands for intracytoplasmic sperm injection) made 5 embryos this morning. I will get a call in the morning to let me know how many lasted the night, then they will go in the deep freeze! Lets hope they aren't partying for too long in the dish!

I have felt terrible again today… hope its the last day…. lots of sickness in the last hour. I hope the drugs will soon be out of my system!

Later on I will post photos of my wig… just trying to get it on my head properly without looking like Tina Turner!!!!!! I have a tight thing now thats like a cap to put on under the wig... but my real hair is too thick and curly!!!

Bye for now
Ali
x

IVF drugs and sickness

Hi everyone

Just a quick update, having my eggs removed in the morning. It's not been easy! Lots of side effects, mainly high temperatures, nausea and sickness. Had the last injections last night. Hopefully I'll feel normal later on in the week.

I have an appointment at my clinic on Thursday. It will hopefully to discuss the chemo etc.

Last about all that I have to report.

Bye for now
Ali
X

Race for Life

Hi everyone,

not much to write about this week. I have a scan on Friday and then next week is very busy! I can't believe in 2 weeks time I'll be on the ward starting chemo........ crazy!!!!!!!! I'm just watching an episode of "House" never seen it before, but they are talking about Auto Immune disease's..... oh and now bone cancer.... maybe I should turn over!

My colleagues at Gecko are raising money for Cancer Research and are running/walking Race for Life in June. I would have obviously been joining them if circumstances weren't as they are. I'm very proud of them!!

I would love you to share this link to your friends and family and help the group reach the target!! If I'm not in hospital and I'm well enough I'll be there to watch!!

http://www.raceforlifesponsorme.org/gecko-ladies

Thanks
Ali

Spa Time.....

... at 12 o'clock on Saturday my mum gave Dave and I a gold envelope...... she said "Right pack a over night bag with swimwear... your going away for the night..." So Dave and I looked at each other and say "Where!!!!" .... silence from my mum!!

After we got our bags in the car, we were presented a GOLD envelope with a postcode on the front....she said "drive to here, they are expecting you, have a nice time!"... so we set off!

Dave knew from the Leeds postcode that it was a hotel near Colton in Leeds, which is a Spa hotel. We arrived 20 minutes later to Thorpe Park Hotel and Spa..... nice surprise.. a night away from the house and the sofa...........that I have sat on for the last 3 weeks feeling bored, unwell, scared, anxious, happy and very emotional at times... so to be away from it all was a nice feeling!

We were booked in for Dinner, Bed and Breakfast and use of the spa. At the dinner table on the restaurant on Saturday evening... I nearly set the table cloth on fire!!! I was SO hot sat after being swimming etc. that I was fanning myself with a menu....after a few seconds....I thought to myself whats burning............I looked down at the candle and all 3 of my tissues are alight across the table! Dave hadn't even noticed..... It was an unreal moment and panic set in ...........AAAAAAAAAAHHHHHHHHHHHHH!!! Calmly I dabbed all the flames out.. the two woman sat to the side of us were watching "the show" and started laughing when I was shouting "OH NO! OH NO!" I eventually put out the flames.... and told our waiter about the incident... he just brought me another napkin to put over the burnt table cloth!!! It was very funny.. but could have been soooo much worse! We had a lovely relaxing night away and manage to keep our snuggy robes!! Thanks to my mum and dad!

xx

Dave's artistic app on his phone took this...

Posting a Comment

I have changed a setting which enables anyone to comment. It was set to only registered user before... should make it easier for you all........... I HOPE!!!

x

Second Chemo Schedule

First Chemo Schedule

RUSH HOUR

Hi everyone,

Dave and I have been rushing all over Leeds today..... appointment at Seacroft hospital (for 3 hours). Signing our lives away for the embryo freezing..... so much paperwork. Then rushed over to St James for blood tests, but the queue was 1.5 hours long! Nightmare as today was crucial for having those done! We are going to try again on Monday. Then myself and Sharyn went on a mercy dash to pick up all my medication down the M62 in Featherstone this afternoon. VERY LARGE BOX! (See photos)... Then went back to Leeds to meet Dave from work.

The medication is injections every evening, administered by Dave (!!).... very stressful with the first one this evening.. and we sort of got it wrong.....(just realised) hopefully tomorrow will be better!!! I will have a scan next Friday and then the collection of the eggs will be the following week.

I will be on ward for a "rest" and to start chemo treatment by the end of March.  I'll have to put a copy of the schedules up on here so you can all read what I have done each day..... I don't think I'll be far from my room put it that way!

Anyway I'll sign off and make a cup of tea... (well Dave will!) My sister and Dave have been amazing this past few weeks..(thanks guys)...driving me everywhere..... helping me with everything.  I think they will be very bored when I'm in hospital!!!!! Couldn't be without them!!!

Night
Ali
x

Verg large box

Very large box open

Everything that was in the box...

Short hair is a faff......

Hi everyone,

I'm not loving my hair today... apart from having bed hair this morning.. I can no longer tie it all back... I have to "style" my hair now... looking forward to the stress FREE wig!

Just wanted to share that Dave and I are going tmrw to start the process of freezing embryos.... which would mean my chemo treatment would start end of March. My consultant at The Haematology Clinic is willing to wait for me to have the fertility treatment done first as the chemo will blast all my chances of conceiving naturally in the future.

Just been speaking to my amazing support nurse at the Heamatology Clinic and they have booked my Hickman Line in for the 29th March. She is also amazing as she turned my decision round yesterday, from declining the fertility treatment to phoning back and telling them I'd like to go ahead. The treatment alone costs between £3k - £4k but the NHS are "fluffing" the cost!Very grateful!!!! Unfortunately my nurse Gill is leaving on maternity tmrw for 6 months. 

I will post this and let you know what happens tmrw at the clinic.

Bye for now 

Ali

x

Hair cut number 2

Hi All,

Had more hair cut off this morning in preparation of the chemo/wig. I feel very cold around my neck!!!! Sad day... i know it will drop out in clumps in hospital but at least it will be shorter clumps (See photos)

I have now left a message on the nurse's voice mail to say I'm ready to come in for treatment. I have an appt on Thursday so they might say bring your suitcase!!

I know a few of you are having problems posting comments... i think you just need to pick google account in the list and then you can type and post. I think this is how it works!!

Bye for now
Ali

Another wig...

I think I'm going for a short bob. Having my own hair cut in the morning to resemble this. I had good advice at the shop. Much better than the other place.

Samples have been ordered in different styles and colour. Which hopefully I'll be able to see this week.

Searching for the perfect wig.....

Had my appt today for a wig..... weird and wonderful. Tried a few on as you can see by the photos, but not many wigs have curl and body to them. Only found 2 that I liked at this shop. (more photos to follow)

I have another appt on Monday at another shop. Hopefully I will find sonething thats "more me"!!

Night
x

On the Ward

Waiting for the nurse 24/2/2012... not sure what is going on with Dave in this photo!

Thursday 1st March - Getting the diagnosis

Dear All,


I will try an update this as and when I have news, hopefully whilst I'm in hospital aswell.


I'm finding it hard work letting every know whats going on. I don't want to put it on Facebook as some of the things I will write about are very personal.


So are you ready.....here goes with my blog


Had a doctors appt today with my consultant who told me that after a week testing the sample they were still not conclusive on the sub-type of the Lymphoma.


So to cut a long story short they are going to be me on higher grade of chemo. Which involves lengthy stays in hospital at a time. I will be given my own en-suite room on a ward with a fridge and a T.V. I can take some personal things in to decorate the room, to make it more comfortable for me.


I was given a schedule at the appt detailing what happens on Day 0 - Day 15. Different types of chemo given on different days. I will be in hospital roughly every 3 weeks for 2 weeks.. some weeks will be less or more depending on how I feel during the 2 week treatment weeks. (All a bit confusing). On some days my red blood cells will drop and I will need to be monitored for infection, on these days its only close family that can visit. My immune system will be all over the place.


I'm happy to final start something as the symptons of the Lymphoma are not very pleasant. We are just waiting on a consultant from the fertility dept to get in touch as I'd like to freeze my eggs before treatment. If this is going to take a few weeks the doctors aren't really prepared to wait as they want to get on with treatment ASAP.


Well I had better post... hope you enjoy reading and find it useful. Sorry for spelling mistakes and grammar!


Love
Ali x