FREE!

Well hello all! I am currently in a very good mood as I am writing this blog from the comfort of a coffee shop in Westfield.. Yes, I am out of the hospital! I was released on Monday afternoon after lots of sitting about - it couldn't come soon enough! I was allowed out on Sunday (as I had 4 neutrophils, hurrah) so we went to Daphne's for lunch. My subtle hint worked and she made an amazing Sunday Roast. On Monday morning my doctor came in to tell me that everything was grand (well I needed more Potassium and fluids) and that I would be free to head off that afternoon. The day dragged in but I was very happy to leave. It was also very strange. This round of high dose was so different to the last time and I was quite sad saying goodbye to some of the nurses! We got them a lot of cakes and things so I think they were quite chuffed with that. On Monday night we came over to the flat for dinner and just chilled which was lovely. I was so knackered and when I eventually dozed off, there was a fire alarm! I was not amused. How typical though?! Yesterday we went to meet my cousin Kate for lunch and it was great to see her. Jamie went back to Glasgow and my friend Ali came to the flat for dinner. I managed to get quite a good sleep last night which I'm quite surprised at, still feel wiped today though! We have clinic tomorrow and planning on getting the sleeper tomorrow night. It feels like we've been here for a lifetime so I am very excited to get home.

The Prof came in to visit last Thursday and it was great to see him. He was very positive about how the treatment has gone and said he wants me to come down to his clinic in about four weeks time. He wants me to keep my hickman line for a few more weeks in case I need anymore fluids and I can get it removed at home. I also need to have my other operation but he said he wouldn't consider that for about another three months. He said it should take about a year to recover from the high dose and for me to feel normal-ish again. He was giving me time scales for when I'll start to feel better but obviously each person is different. He said it's very important that I take things slowly and try not to push myself - I think I'll struggle with that! I said to him that I can't wait to be able to do a cartwheel again, which he looked a bit shocked at! All I meant was that I can't wait to have the energy to do a cartwheel again! I don't envision being able to do one anytime soon! I can't remember what it's like to have any kind of energy, I'm so excited to be able to stand for extended periods of time - how sad is that?!

I don't think it's really sunk in that this is my last round of high dose. It all seems a bit unreal. My consultant from Christmas time came to visit me on Friday (as Mum had brought him Tunnock's snowballs!) and it was good to catch up with him. He said that there would be no benefit in three rounds of high dose and that two should 'do the job'. I'm not even sure if that makes sense but it is a very exciting prospect. It feels very overwhelming that this could be it, I still don't think it has sunk in.

I've taken a few photo's over the past few weeks so I'll try upload these... This is me with Nadar (one of my favourite nurses) helping me shave my head. He was so lovely and looked after me so well.

These are the butterfly mobiles that Rebecca and the girls made for me - how cute are they?! Thanks guys. Also the scary Jamie face that Aileen made!

This is a picture of my bright and cheerful room!

This is a selection of some of my lovely cards - thanks guys :)

This is me posing with my last bag of Potassium - very happy at this prospect!

This is the mobile Jamie's Granny made me - isn't it lovely?! I adore it!

This photo was taken about ten minutes ago - posing with my amazing expresso. I was feeling pretty woozy and it has definitely perked me up. It's pretty warm in London today so I had to improvise with one of Mum's scarves and turn it into a turban type thing. This picture is for your benefit Clare! I hope you approve!

Anyway, I don't think this post has made much sense, I just wanted to let you all know that I'm free! Thank you everyone for your continued support and prayers through this horrible time. It really has not been pleasant but it has been such an encouragement to know so many people are thinking of me. We're hopefully meeting Dad and our friend Peter for dinner tonight so that will be nice. I best be off now, think that's Dad here! Laters!

Hello neutrophils...

I am writing this from my phone as the internet hasn't been working today. I apologise now for any spelling mistakes so will keep this brief! My doctor came in to inform me today that I have 1 neutrophil.. Yes big news! I had 0.1 yesterday so they took a huge leap today! She came into my room and didn't put on a white apron - that's when I knew I would receive good news! She said I was even allowed to leave my room.. Very exciting. I had a lovely visit in the shape of Aileen so when she arrived we went to the Costa downstairs for carrot cake. My mouth is still pretty sore but I powered through - mainly because I love carrot cake! I'm not sure exactly when I'll be allowed out but we're hoping for Monday (keep everything crossed). Today they've given me a lot of fluids and some blood so that should perk me up. I have eaten quite a lot tonight as my mouth is so much better. I cannot wait to have a good meal though! If I'm allowed out on Sunday we'll maybe get to Daphne's.. I would love that as she makes an amazing Sunday roast (subtle hint there..). Anyway I best be off, I feel like I want to say a lot more but I don't really trust my phone. Hopefully this post makes sense and I'll have internet access tomorrow (to check all my mistakes). Good night all.

The Sleepover Club

Mairead here! Thank you to my guest bloggers for doing a great job as always. Now, I don't know if anyone remembers an era of books called 'The Sleepover Club' - they were the same genre as Sweetvalley High and the like.. I remember LOVING these books and many an afternoon would be spent going to the library trying to get a new one. Back in the day, sleepovers were always so much fun. At Primary School I think every birthday party was a sleepover and everyone got so excited about them. Everyone, except me.. I was a total wimp and got the nickname of 'The Fader' as I would always be the first person to fall asleep and then ultimately the 'trick' would be played on me! I once remember waking up with my face covered in Vaseline and being very confused - that was not one of the funnest parties. Luckily, I grew out of this 'fading' malarky and managed to have more fun at sleepovers. It was always SUCH a huge deal to stay up the whole night though - I've never quite understood this. Everyone would turn up at school on Monday to compare and compete over who stayed up the longest. This was never me but I most likely exaggerated. In the ward last week, my sleep was dire and as I was so weak Mum had to stay in with me. This is definitely a different sleepover experience! One night I didn't get a single hours sleep and felt dreadful.. Not good. As mentioned previously, I do not cope well with sleep deprivation! Last week wasn't nice at all. I hate feeling so weak, and even though I am not aware when I fainted, it was pretty scary. It's not nice waking up to see a lot of scared faces surrounding me! I really don't like feeling so out of it - we seem to think it's one of the anti sickness meds I take called Nozinam so I've been very reluctant to take it since then.

Last week went past very slowly, I wasn't sleeping well and the mouth ulcers started to kick in. Rona, Teenie and Grace came on Thursday night which was good. They kept me entertained on Friday but I can't say I was much chat as I was so tired! On Friday night I was given platelets as my count went down to 9 (which is pretty low). I was also on an antibiotics for an infection and a patch on my arm for pain. We noticed around 9pm that I was burning up, my whole body had gone red (similar to when I had vancomycin, my other allergy) and I was itching everywhere. We called in the nurse who gave me piriton to try and stop it but didn't really do anything. She then gave me Hydrocortisone again calm it down and gave me my evening tablets. Teenie decided to stay with me that night, however, by 12am the itching still hadn't died down. We called a doctor who decided we should take off the patches for pain in case I was having a reaction to them (up until this point we had assumed it had been the platelets causing the reaction). By now, as I had taken so many different types of medication I was so drowsy and couldn't keep awake. Teenie got pretty worried as my breathing had slowed down (due to the amount of medication) and ended up staying up all night watching me! Bless her, she got such a fright. I tried to keep myself awake but literally couldn't. Mum came over first thing in the morning so Teenie could get a rest but it was a really horrible night and I'm now very paranoid about taking too many 'woozy' tablets at once. It really was a horrible evening and I'm so thankful Teenie was there to look after me.

We didn't do much the rest of the weekend, just blethered and watched a couple of films. I was feeling generally OK until the pain hit in again on Sunday night... I had had very severe stomach pain the previous week which is why I was given the patches. They normally take 12-24 hours to wear off so Sunday night wasn't fun. The stomach pain, combined with awful mouth ulcers, did not make a happy Mairead! I was given quite a lot of pain killers on Monday morning which take a while to kick in and I've also been given the patch again. It has definitely helped the stomach pain but made me pretty drowsy too. Rona, Teenie and Grace left yesterday and I was sad to see them go! It's been good having them here to give Mum some time off and I've missed seeing them! It is pretty isolating down here and I'm getting incredibly fed up. When I get a sudden burst of energy it is very frustrating as I can't do anything with it!

When Ruth was down she did a great job of brightening my room up a bit.. Here's some snaps of it at the moment (including the balloon from Mary & Co, the lovely flowers were made by Stef and some nice cards too).

One request I had for Teenie and Grace was a trip to Westfield - they didn't mind too much - to bring me some Krispy Kremes! I managed to eat one which was cut down into tiny bits so I didn't have to chew. Sooooo good!

Auntie Dianne visited on Monday and brought a poster Claire had made for me - thanks Claire, I love it!

I also received an AMAZING delivery of balloons from the Forster's! Thank you so much guys, it was such a surprise! The Sister came into my room and was so intrigued what was in the box. Here is a lovely snap of them. Thanks guys :)

So that is pretty much a guided tour of my room! I am sick of it now, cannot wait to get out. I have also written a long list of food that I want when I get out. I am still having waves of sickness but it is generally under control. As of this, I am hungry due to the steroids but the painful mouth makes it very hard to eat anything.

The Ward is very different this time. My last time at this hospital wasn't great and I think I was so apprehensive about this round of high dose in case it would be similar. However, this time around the nurses have not been as stressed or as understaffed. As I was in over Christmas the last time, they were definitely struggling with fewer staff and I felt like I was a constant annoyance. However, on Weston Ward most of the nurses have been incredibly attentive, will chat away to us all and have been very helpful. I feel it has really helped my mood being in a much more positive atmosphere and I am very thankful that it has gone reasonably well so far!

My white count is still at '0' so who knows when I'll be out. They say it takes 10-14 days after Stem Cell Transplant and my transplant was last Wednesday.. I'm saying to myself it'll probably be next Wednesday that I'll get out. Fingers crossed it's sooner though! Wishful thinking... If anyone has any ideas on how to keep myself entertained please let me know - I HATE daytime television and I'm finding it hard to concentrate on anything. Also, the tinglyness on my hands and fingers has come back FULL FORCE so apologies if it takes a while for me to text back (hand cramp ya see). Anywho, I now realise this has been an incredibly long blog so I best be off. Happy Wednesday!

High dose chemo : take two

Hi there - Mairead's mum Helen here. I've been instructed to update you as Mairead doesn't feel up to it today. I'm also going to explain why we're here having this horrible chemo and what exactly is involved.

We had hoped there would be no more chemo after the operation in October, but tests showed it was possible some cancer cells could have escaped and the only way to get rid of them is giving much higher doses of chemo than usual. Because the chemo is so strong the side effects are worse than normal. Of most serious concern is the effect on your bone marrow which is suppressed to the extent it stops producing cells - including those which help your body fight infection.

This kind of chemo is given at the Beatson, but their regime involves only two drugs. Prof Seckl recommended this 4 drug regime - CarboPEC-Taxol - so we are in London.

The stem cells went in fine on Tuesday - the rest of Mairead's stem cells collected in November were defrosted before our eyes and put in via a drip. The preservative causes a very distinctive smell - the nurses say it smells like popcorn - which seems to stay in the room for a couple of days. Although these cells apparently make a beeline for your bone marrow it takes them some time to start producing all the cells that normally come from there - the most important being the neutrophils which fight infection. Last time it took 10 days before they appeared. In the meantime, Mairead (neutrophil count 0.0) is stuck in her room which has a cold draft all the time as the air is continually sucked out to get rid of germs.  Both men in the family are now excluded - Iain has a cold so went back home today and James has a sore throat so his visit has been cancelled. Rona, Teenie and Grace (last minute substitute) are on their way for the weekend - hopefully germ-free.

Yesterday the tummy pain, which was problematic last time, flared up again necessitating a trip to the X-ray dept on a bed with a mask on - X-rays were OK. Knowing what medication works and agrees with Mai means it has been controlled a bit quicker this time. Today she has had good spells and bad spells. The dietician has sent up jellies and high calorie drinks as her mouth is too sore for any solid food.

We are in Weston ward this time - bit older so bigger rooms. Thanks to Ruth's posters (nurses love Zac), Stef's flowers, Mary, Iain and Alex's balloon and all your cards it is getting a bit more welcoming. Thanks for all the e-mails, txts etc which are such an encouragement. Also thanks to Daphne for bringing me an air bed as there are no chair/beds here. Felt I could not leave Mai alone after her keeling over episodes. Hopefully Mairead can do the next blog herself!

The Sound of Silence

I'm getting the hang of this blogging business (yes, it's Iain Macleod, Mairead's Dad with another guest post) and have been allowed access to again offer some thoughts on how things are going with Mairead's treatment.

Her chemo is finished now and she will get the stem cell transplant tomorrow.

She was very weak, silent, drained and immobile yesterday; indeed she fainted on her two excursions from the bed- possibly because of dehydration. But today she has been brighter, eating and Facebooking (is that a word?). She even got two questions right on University Challenge.

So far this high dose chemo seems to have hit her less hard than the last. In the next ten days though, until the stem cells start reproducing, Mairead can expect a good deal of pain although the staff will be able to use what they learned from her last treatment to get on top of it.

Ruth and Ali were here for a few days and really boosted her morale. Thank you.

I offered her black pudding tonight- she didn't fancy it! But she did have some mince (they never seem to cook that on MasterChef).

Mairead knows that some people who themselves are suffering sometimes read her blog and she says she is especially thinking of them.

I waited for the Lord my God
And patiently did bear
At length to me He did incline
My voice and cry to hear

Go Ahead

Mum has popped out to Waitrose so I am having an afternoon listening to Rilo Kiley. I am only two days in and sick of daytime TV.. A lady came round this morning offering foot massages - I've never had one before so I thought I might as well. However, I could not stop laughing.. It was so tickly! I don't know if I have incredibly tickly feet or it is the neuropathy (let's blame the neuropathy) but I just kept on giggling. In the end I think she got rather frustrated and just 'massaged' around my feet..

Today is supposed to be a day off chemotherapy but as it started late yesterday I didn't get unhooked until 2pm. I took a photo of the schedule if anyone wants a look.. I still don't really understand it.

Basically, I'm getting a lot of drugs and I am having to run to the loo constantly! I am already starting to feel a bit ropey, I'm not looking forward to it hitting hard. The last time I think it was about 4 days in so let's see how I am on Friday.. Mum and Dad's friend Peter popped in to say 'hi' today and Auntie Dianne is coming round tonight. Ruth and Ally are also coming up tonight and I'm looking forward to seeing them. It feels strange that a whole day has passed and I have done absolutely nothing. It is incredibly frustrating. The steroids are also being chucked at me quick and fast which means my sleep will be rubbish... I do not cope well being sleep deprived and if anyone is coming to see me in the next few weeks, be prepared - I will be very grumpy. I am trying not to think about the other side effects at the moment. I have nothing else to report so.. Laters!

Well oh well, we made it to London! It's been a mental couple of days but I'm on the correct ward now... When we arrived on Sunday evening my bed still wasn't ready so I went to stay in the hotel accommodation with Mum (after waiting 4 and a half hours to be told this!). On Monday we came to the hospital at 9am and waited to see the doc (who didn't come til after 1pm) to be told that my room still wasn't ready and that we couldn't go ahead with the chemo as planned as I wasn't given my steroids the night before. The chemo regime is very strict (it HAS to be given on a Monday as it is a 7 day cycle and the stem cells need to be given on a Monday) yet the pharmacy have apparently managed to work around this. We'll see.. The doc said I wasn't able to get the steroids until 11pm which would delay the chemo by a day at least. As of this, Mum and I decided to go to the cinema to pass the time and met my Cousin Kate for dinner which was nice. I was really unimpressed by this - the steroids were written up for me so the doctor on Sunday night obviously didn't read the chart properly which isn't very encouraging. I didn't know I had to have these steroids 12 hours before the chemo and if I did I would've made sure I got them! I still haven't been given the chemo regime but when I do, I'm going to make sure it's stuck to. I was very annoyed about the situation yesterday but I have calmed down a bit now! I just have to keep on top of them! The chemo was supposed to start at 11am today but didn't start til after 2pm. There is always so much hanging about- I am so bored already!

I'm on a different ward this time and the room is a bit bigger. The address is, Room 3, Western Ward, Hammersmith Hospital, Du Cane Road, London, W12 0HS (as some folk have asked!). I brought some photo's from home which I've stuck to the wall but it looks very bare! It feels odd that I'll be stuck in here for another three weeks at least. Here is a snap of the room..

My first chemo drug which is called Taxol. Fun.

Mum getting on with her knitting..

As I started the steroids so late on last night I had to stay on a different ward and I was in a room with two other people. One lady was on her phone at 6.45 this morning which woke me up - I was not amused! There are definite benefits to having a single room..

While sitting waiting to see the doc yesterday morning I amused myself by looking through all the Oscars dresses. They were all rather dull this year really. When I was diagnosed last May, doctors kept asking me when I started to feel a bit iffy. For some reason, the day of the Oscars really stands out (end of Feb 2010). When I lived with Ruth and Amy we would normally (well ALWAYS) keep Monday night free to paint our nails, drink tea, watch rubbish TV and go to bed early. Rock and roll I know. Anywho, last year we watched the Oscars coverage together and that's the first time I really noticed something was up. Mum gave me some medication (which didn't help) and that's when I started going to the GP a lot. It is very strange that so much has happened in a year - I never thought it would be anything like this. At the beginning of it all, my doctor at the Beatson said she thought it was a fast growing tumour. I guess it's silly to think about when it all started as I'll never know the answer, but it doesn't stop you from wondering!

I'm really nervous about the upcoming treatment. The last time it was so dreadful and I'm scared it's going to be as bad. The recent mistakes/last minute changes haven't helped me either. I'm just hoping and praying things go OK. I just can't wait for it to be over! Oh well, I'll play it by ear I guess (I now HATE this phrase, feel like it sums up this entire period!). Mum has popped out to Tesco so I'm just listening to music and faffing about on the computer. I've also started a really good book so I might try get that finished before the chemo really hits in. Let's hope that takes a while!