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