2K10 - See ya!

Hello there everyone, another guest blog coming your way - don’t worry it’s not Teenie, it’s Rona.  For those who do not know me I am one of Mairead's younger sisters. 

I never thought writing a blog could be so difficult. I have been sitting here for nearly an hour trying to figure out what to say…

Well, since it’s New Year’s Eve it seems only right to reflect on 2010.  Maireads shock diagnosis at the end of May changed everyone’s life.  Overnight everything had to be different. Thinking back on that time it’s almost as if we were all suddenly transported into this new world. Everything changed.  Initially it seemed impossible to envisage things ever getting better, my whole family were heartbroken and scared and I don’t think anyone knew what to do or how to move forward.  So I guess it seems easy to think back on 2010 with negative emotions. We have all been faced with difficult times, Mairead more so than anyone else. 

However, there have been some positive outcomes.  The way Mairead has dealt with the cancer and everything that comes along with it is inspirational. She has shown courage, strength and a determination to fight.  The love and support of family and friends has been truly amazing and we are all so thankful for this.  Additionally, we managed to raise over £10,000 for Cancer research UK, an amount that will most definitely have an impact to the work of this charity. Most importantly what has happened this year should hopefully give everyone a new sense of perspective. It has done so for me and I intend to make the most of 2011.

We are currently with Mairead in the hospital and shall bring in the New Year here.  As we normally spend the New Year with family in Skye it certainly feels different. Hey everyone in Skye – don’t miss us too much!

Teenie and Ruth are currently trying to persuade Mairead to put some make-up on. Mairead has agreed if Teenie does not speak for 10 mins, blissful. James and Ally are watching Step Up 3 and now all pumped up for a dance off – who do you think would win?

2010 may always be remembered as the year Mairead was diagnosed with cancer but 2011 will be remembered as the year in which she fought it.

Chemo terminated- not yet but soon!

Hi everyone, Helen here- writing this against my better judgment. Don't know if I can measure up to the standards already set!! Mairead wants you to know what's been happening over the last week.

Some of you may be surprised to know I am a fan of the Terminator movies.  It struck me recently that the effects of this chemo (CarboPEC-Taxol)resembles Schwarzenegger's character in Terminator One  - every time he seems to have been destroyed he comes back to get you again. In the same way just when we thought the side effects of this chemo were controlled they produced something new to deal with!

Just when it seeemed the pain and sickness were controlled on Monday we had low Potassium levels which initially caused an SVT (heart rate 160- not pleasant to watch or experience). As I write this more Potassium is going in to replace what's been lost due to the chemo's effects on the kidneys. The stem cells were delayed a couple of hours but went in successfully after being brought up deep frozen and thawed out in a tub before our eyes!

On Tuesday some of the side effects experienced from previous chemos got worse - numbness and pins and needles in hands and feet, and tinnitus and deafness so TV needs to be turned up!

On Wednesday the mouth and tummy pain started - due to inflammation throughout the gut. This remains problematic requiring increasing doses of painkillers and making eating and drinking very difficult.

On Thursday platelets plummeted to just 9 (should be at least 120) and had to be replaced.

This catalogue of symptoms was relieved on Friday with the arrival of Rona, Teenie and James with bags of presents and cards -  THANK YOU ALL SO MUCH!! We are staying at hospital accommodation next door to the hospital, including a flat run by the Karen Morris Memorial Trust (http://www.kmmt.org.uk/) This has made such a difference and we are extremely grateful for their kindness.

One of Teenie's first tasks was to give Mairead a Mohican haircut which was further enhanced by a Chanel bow as decoration. Unfortunately photos of this were vetoed.

Christmas day was certainly different. It started as semi-normal with Christmas presents, but then fatigue set in. The rest of us had steak in two sittings- with or without sprouts. One plus was the absence of the usual huge number of dirty dishes.

To get back to the Terminator- he was eventually totally crushed. Hopefully it will not be long before stem cells appear and this chemo is crushed too!

Tom na Gruagaich (a prize to the first to explain the connection to Mairead)

I (Iain Macleod- Mairead's Dad) am privileged to be allowed to write this guest blog as Mairead is just too weary and sick. She's sorry that she hasn't been able to reply to all the texts and e-mails.

The last few days have been pretty grim. Mairead has been getting intensive high dosage chemo, she is feeling rotten all over, she's tired but sleepless, she should eat but can't and has periodic bouts of vomiting.

The chemo is over but is still in her system. The stem cell transplant is on Monday 20th but will take a few days to kick in. Still to come are the  mouth ulcers, the inevitable infection as her system is left with no defences and more nausea, pain and distress.

She has just said that the stress of educating parents in blog access adds to her woes.

But.... but we have a lot to be thankful for- if one can ever be thankful for anything associated with cancer.

The cancer was found early, she responded well to the first chemo, the operation was successful, the hormone that the tumour exudes has dropped to below 2 (1,582 when first diagnosed), the medical care is sophisticated and dedicated and we live in a time and a society when this cancer can be treated.

Mairead's dedicated circle of friends have been extraordinary in their support. We can never thank them enough.

So many friends have been praying for Mairead. Again, we thank them.

One of my favourite psalms is 116- it begins in the old metrical version

'I love the Lord because my voice and prayers He did hear

I, while I live will call on Him, who bowed to me His ear'

Hickman Line: Mark 3

So I am definitely getting my third hickman line tomorrow morning. My third line in 5 months - I am not having much luck with these! I have said I want to be heavily sedated before it so fingers crossed I'll be talking nonsense and not realise what is going on. They have been apologetic about their mistake but this does not make me feel any better about the situation. I don't want to land someone in it, but it just doesn't seem fair! As you can tell, I am rather annoyed.

I have had an incredibly boring day. I was hooked up to chemo for 24 hours and it came down about 6.30ish. I'm supposed to be 'walking around' but it is quite difficult when you are stuck to a machine! This morning I also felt incredibly nauseous. I kept saying to myself, 'this will pass, this will pass' but it doesn't seem to make it any easier at the time! Mum and I spent the day listening to Elaine Paige's Radio 2 show (mum knitting, me reading) and started to watch Stardust. I can't believe it is 21.30 and I have achieved next to nothing. It is incredibly frustrating.

Mum has gone out for dinner with Auntie Winnie and Kate to Jamie Oliver's 15 Restaurant. I am incredibly jealous as the food in here is horrid. I have never been particularly fussy with food (except butter beans, I hate them) but I just can't face the food in here. A dietician came round today to discuss food and said how important it is for me to keep on eating. I kinda felt like saying, 'well do you wanna make the food half decent then?'. Obvs I didn't as she was very nice and understanding but it seems quite strange that they want you to eat but the food is rank! I think Mum is going to try and get to Waitrose tomorrow to get me some proper food. One thing I am not allowed is salad and I am gutted about this! That might sound a bit odd but I do love a good salad. It's strange the things that I am now not allowed to eat - and also the things that I crave! At this moment in time I could so go a Wagamama's...

I don't really have much more to add so I shall be off. I hope everyone is having a nice Tuesday - I can't imagine I'll sleep well tonight with the prospect of tomorrow looming!

It's been a hard day's night

Mum and I are currently working our way through all the Beatles tracks I have on my Itunes (which is loads). The last one to play was Daytripper which has always been my favourite. I was in the Concert Band at school (which was GREAT, I played clarinet, I don't care if anyone slags me for it) and one of the best pieces we played was Daytripper. The first clarinets got a great part! There's so many Beatles tracks I like and one that will forever remind me of Teenie is Lucy in the Sky with Diamonds. For a while this was her morning alarm which she would never hear but EVERYONE else would. It would then play on loop until someone went to shake her. I do not have good memories of this song but I still like it!

There currently seems to be a bit of a mix up with my Hickman Line... There are two lumens coming from my hickman but apparently this round of chemo needs three.. I've been told that they may need to take my current one out and give me a new one. As you can imagine, I am not very happy about this. Some days they will be running three chemo drugs at the same time and these cannot be put in the same lumen. The doctors are coming round soon for a ward round and I will definitely be voicing my concerns about the situation! The letter that was sent to Charing Cross says that I need a double lumen Hickman Line so Charing Cross haven't made the mistake. I wonder who has.. Hmmm..

Today seems to be going very slowly. Mum is knitting a jumper for James and I'm just reading. As I have been given steroids, my appetite is back and I think I've eaten the most since my operation. The problem is, there's hardly any shops around here! There's no M&S like the Beatson (gutted). The hospital is also right next to a prison.. Weird. Some folk have been asking for the address here and it is; Room 7, Dacie Ward, Hammersmith Hospital, Du Cane Road, London, W12 0HS (no flowers allowed on ward though!). Feel free to send a Christmas card! I forgot I would have a pin board and I forgot to take any pictures so currently it looks very dull. Jamie is coming down on Thursday so I am going to ask him to bring some down! One thing the booklet has said that if anyone is planning to visit, they are to send a text/call me beforehand so I know to expect people. Also, please don't feel offended if I tell you not to come because I am too tired. I'm not very good at saying it so if I do, it will be because I'm knackered! I hope that makes sense.

They've started the chemo now and I'll be getting lots of drugs over 24 hours, a day off and then the same again. This routine will run for seven days and then the bone marrow transplant will take place. I'm trying not to think about all the horrid side effects at the moment...

Think the doctors are on their way now, best be off!

On the road again

Good afternoon one and all. I am currently writing this blog on a train to London and I have no idea where we are at the moment... I can't even remember what the last station was! Well, I think we're about an hour away from Kings Cross and there is hardly any snow. Wherever we are, it's not nearly as pretty as Scotland. Before we left Hammersmith a few weeks ago, the specialist nurse (Janet) gave me a folder filled with information about the stem cell treatment. I'd kinda forgotten about this and just read it all there.. Man alive that is a lot to take in! It covers everything from diet to oral hygiene (brushing teeth can take up to 30 minutes, four times a day) to getting massages. It also discussed the more horrible parts about this treatment which I am really not thinking about. I'm unsure if it has been a good decision or not, to not think about what is coming ahead. I have told myself that we'll probably be in London for about a month and that it's going to be dreadful... Just so I'm not disappointed in case the worst happens!

It has been great being at home and I'm missing it already (even though it's only been a few hours). I've not really been able to do much in the past week due to the snow but it was nice being in my own room again. It's crazy how everything has completely shut down because of the snow. I've not had my blood checked all week as there have been no vans going to the labs. I just hope it's ok. I've been getting very fed up with the snow and annoyed that it's caused so much hassle. Maybe this is my inner Scrooge coming out again but I don't care. I also have a huge fear of slipping on the ice. I fell last year (whilst wearing wellies might I add) and smacked my head off the pavement. It was a rather embarrassing situation more than anything but I'm always very scared in case that happens again - particularly now because I'm so unsteady on my feet!

(For those wondering where we are, we have just stopped at Peterborough).

The past few days have been rather busy and I do feel very tired today. On thursday night Cat, ML and Will came round for dinner and some chat and it was good for a catch up. Friday was Teenie's actual birthday so we went out for dinner and watched Home Alone. It was quite low key, but we weren't able to do much because of the snow! My friend Stef and her boyfriend Tom have recently returned from 6 months in Vietnam and they came round on Saturday. I don't think I realised how much I had missed her until I saw her. Even though she has been far away for the past wee while, she has always been there and known exactly what is going on with me. For purely selfish reasons, I am glad that she is home. However, I know how tough things will be over the next few months but I know they will be fine. Of that, I am sure. On Saturday night my usual crowd came round for dinner and the X Factor. Mum made a turkey with all the trimmings and we had some crackers too. Dad even made us all play a game of Empires - I think everyone enjoyed it?! It was a lovely night and I am very lucky to have such supportive people around me.

It wasn't nice leaving home this morning but I am trying to remember that the reason I will be in hospital over Christmas is so that I will be around for the next 60 Christmasses (something a new friend has wisely said!). I suffer from cabin fever being in the house (and our house is pretty big) so I have no idea how I'll cope in an isolation ward. I'm saying to myself that it is just temporary and things will pick up as time passes.

I'm unsure if I'll be able to blog again when I'm on the ward (maybe James will do another guest blog?!) but hopefully I'll have the energy to write something down. Mum is staying with me the whole time and the rest are coming next week. Jamie is also coming for a few days next week, and Ruth and Ally are coming over New Year. I know I'll be entertained with all these visitors but I'm saying sorry now if I chuck them out because I'm tired! I hope everyone is having a lovely Sunday.

PS I watched the final of Australian Masterchef... IT WAS GREAT. Here's a snap of Mum and I's favourite food critic, Matt Preston..

SURPRISE!

Hello there! Myself, Rona and some friends have been planning a surprise party for Teenie's 21st for quite some time and the big event happened on Saturday. I think it went pretty well! Teenie said she knew something was going on but didn't realise it was a party. I thought we'd been pretty stealth about it all but anywho. Here's some snaps of the night..

These are only a handful of the pictures but I don't want to bore you all with even more! It was such a fun night and we were all so happy everyone made the effort to come despite all the snow. Teenie got lots of lovely presents so I think she was happy with the outcome! Rowan and Janice brought LOADS of amazing Christie's cakes which we didn't open until everyone had left... Whoops! In our defence, we didn't realise they were there. It was rather amusing when Ami put a cake in Rona's face... It won't let me upload the picture at the moment but I will do! There was some bubbly floating around so it was nice to have a wee glass of champers to celebrate.

We've had a very quiet few days at home... The snow has made it pretty impossible to do anything! Teenie and Mum have just taken Twinkle to the vet and they've been out for about an hour and a half.. The poor cat. Hopefully we will make it further out tomorrow - I need to do Christmas shopping before going to London!

So happy to be home

Hello! I am writing this from my bed at home in Uddy and I am so glad to be back! It has been a really busy few weeks and it's very nice to be home. When we came back last night the house was surprisingly tidy. Mum wasn't pleased though as all her flowers were dead and clearly nobody has done any washing in two and a half weeks... Teenie said she'd just been wearing different clothes every day.

Yesterday was a bit crazy. We booked our flights with BA at Terminal 5. I had another CT and MRI scan yesterday morning so the flight was for the afternoon. We went to the airport straight after my scans and it was heaving. We ended up in the wrong queue to start with (which someone told us to join) and then in a queue which lasted four hours.. We were not pleased when we got to the front of the queue to be told there were no flights and we couldn't get one until the next day. The staff were all pretty rude and unhelpful - they will be receiving a harshly worded letter from me! In the end, we just went to Euston and managed to get a train. We got home to Uddingston about 10.30 so it was a very long day. Here's a pic I snapped of Heathrow..

The week between the chemo and the apherisis treatment was quite nice. It was the first time since I'd been ill that I was actually able to go places in London. My good chum Clare was down for a few days so we went to see Harry Potter (which was pretty good) on Tuesday and on Wednesday went for a wander round Covent Garden. On Thursday we met my cousin Kate for lunch in Liberty's and a wander round the shops. I was quite surprised that we went to the big Topshop and I bought NOTHING. Very impressive. On Friday we made another trip to Charing Cross to go to the clinic and see Prof. On Saturday my friend Jemma came to Daphne's for the day to visit. It was great to see her and I managed to try on my bridesmaid dress! It fitted perfectly (well done Jem!) and hopefully by the time of the wedding I won't be bald or have a hickman line. On Monday I started the apherisis (stem cell treatment) stuff at Hammersmith. It was a long day with lots of waiting around and it was the same on Tuesday. I met the transplant doctors and they were both really nice. On Wednesday I had A LOT of tests (which they called the 'Work-Up Day') and a long chat all about the high dose treatment. They haven't sugar coated anything so I am expecting the treatment to be dreadful. It has a lot of horrid side effects and I've been told it's going to be a lot worse than any chemo I've had before. The doctor told me about some of the long term effects from the chemo (regarding fertility and the like) which had never really been discussed before. I don't really want to talk about it but let's just say it wasn't great news. They are also unsure if I'll have two rounds of it or not. Apparently recent studies have shown that two rounds are more likely to get rid of all the cancer but we're going to wait and see how I cope with the first round. The specialist nurse showed me around the ward and told me I'll probably be in for 3 and a half weeks. I've to stay in my room the whole time and I know I'm going to go stir crazy. She said I could decorate my room with tinsel and things but won't that be even more depressing?! We've also been told I'll be admitted on 12th December (two days after Teenie's 21st) so I'll get just over a week at home.

We did get some good news though - my HCG level has fallen to 2 (which is the lowest it's ever been). It has been going from 3-9 since the operation. They are unsure what this means and aren't reading too much into it but it is something positive!

While I was in London some friends have also been going through quite a tough time, I just want them to know that I'm thinking about them. It's crazy that so much has gone on in the past year.

I was going to say a bit more but now I can't really remember what... Think I'll just head to bed. Night all.