Tuesday, 26 October 2010

Horses and Zebras

I've been meaning to write a blog for the past week but really not been in the best mood. I didn't really want to write anything whilst incredibly grumpy! I am still very sore and yesterday was my first venture outside since getting home - I didn't manage to walk very far at all and was pretty annoyed with myself. It's nearly three weeks since my operation and I thought by now I would've felt more normal... Guess not!

So, we saw the prof last Monday afternoon and he basically confirmed what he had told us on Friday night - I will need at least one round of the high dose chemotherapy. As this chemo kills off all your bone marrow, we will need to use my cells taken from the Aepherisis. However, these cells are infected - typical! In order to 'activate' (unsure what other word to use) the bone marrow cells, you need to have a round of chemo so this either means I will need a random round of chemo to bring them to the surface or they will take them directly from my bone marrow (OUCH!). To be honest, I'm gutted about this. I was really hoping that the operation would be the end of it but now the problem is, we just don't know when this will end. I really hate the uncertainty of the situation, I just wish it was more straightforward. On Monday they also removed the 33 staples from my tummy. I was told this wouldn't be sore... Yeah right! Turns out only the middle of my stomach was numb so I felt most of the staples coming out. It's fair to say I was not happy with this! Dad flew home on Monday night and Mum and I came back on Tuesday. It was great to be home and be in my own bed. I forgot how annoying our cat Twinkle is though, I didn't miss her. I also had LOADS of Masterchef Australia to catch up on so that has kept me busy.

I found it strange that most of my hair, eyelashes and eyebrows started to fall out when we came to London. It was really frustrating me so I asked Ruth to come over and shave it. It took longer than we thought but Ruth being the perfectionist that she is, did a great job. I feel a lot better without the wispy hair but I do look a bit like an alien. Also, my head is constantly freezing! I do not know how Ally Meek coped being bald for so long.

I was supposed to have an appointment at the Beatson this afternoon but felt awful, so Mum went without me. It was to discuss my further treatment and whether it would be carried out in the Beatson or London. It looks like the decision is up to us, which is making me quite confused. There seems to be quite a few contradictions with the treatments in the different places so I am unsure how we will choose. We have a call with the Prof tomorrow so hopefully more will become clear then.

I was on the BBC News website the other day, and there was an article about a young girl who has cystic fibrosis. She also has a blog which I had a read most of, and a lot of what she said was very similar to how I feel. One of her blog posts really stood out and identified a lot of the emotions I have felt throughout this. If you want to have a read here it is... http://tor-pastthepointofnoreturn.blogspot.com/2010/08/cathartic.html - I think it was very brave of her to put this down for people to read (even complete strangers like me) as there are times I have felt similar, but have not wanted to talk about it. I know we are in different situations, but a lot of what she said has resonated with me.

My sleep pattern has been a bit strange lately so I'm going to try and have an early night tonight. I am aiming to be in bed for 10... But that never happens. Good night all.

Sunday, 17 October 2010

Raise it. Run it. Beat it.

Today was the day of the 10k which my siblings and some of my lovely friends ran. The above is the 'catchphrase'. I was so disappointed I was unable to go but it sounds like it was a great day. Rona has already put pictures on facebook and here's a couple of them...

Here's a pic of most of Team Mairead before the run.

I like this one - it's of Ally, Ruth and Teenie crossing the finishing line.

Teenie, James and Rona showing off their backs!

The back of Alice's T-shirt, which I love!

Most of the team after the run, looking a bit tired!

Some lovely members of my family who showed up to support all the runners.

Finally, the amazing cake that a very kind colleague of Ruth's made for the day (Thank you Keggers!).

I am very proud and also feel so honoured that everyone put in so much effort for today. I am incredibly touched by the amount of people who took part and I'm so thankful to have such great friends. I will definitely be at the next one!

When Ruth came down last Monday, she presented Mum, Dad and I with 'Team Mairead' badges. Dad has been wearing his most of the week. Cringe.

The Professor phoned Mum on Friday night to let us know he received the preliminary report from the pathology. It's a mix of good and bad news. The good news is that they managed to successfully remove the tumour from my bowel, the lymph nodes and the lesion on the liver. However, the tumour in the bowel appears to have ruptured during chemotherapy and some cells have most likely escaped. The problem is, we have no idea if the cells that escaped were live cancerous cells or dead cells. In light of this, the prof thinks it is most likely I will have to have the high dose chemotherapy as a precaution. He said he would think about this over the weekend and we would discuss it in full tomorrow. I know it is a positive thing that the tumour has been removed but on Friday evening I was so disappointed. I was so anxious before he phoned and was desperate for him to say that everything had been removed successfully. As with this horrible disease though, nothing can be predicted. None of us were expecting this to happen and once again, it is a change that I will just have to get my head around. Well, we'll just have to wait and see what he says tomorrow.

One positive thing about the past few days is that I am not in hospital. It's safe to say that there is nothing I miss about it! I've managed to get some pictures off my phone, which aren't desperately exciting but here you go. Since moving back home, I have noticed that James can pretty much fall asleep anywhere..

Here's one of Dad clearly having lots of fun.

Rona too...

When I came out of theatre, I had drains coming out everywhere and also three venflons in my left arm. When the last one came out, it created an almighty bruise. One which I have captured for your visual pleasure. Not entirely sure why as it is a bit rank.

Since I've been out of hospital I have not left Daphne's house. It's lovely and cosy so I am very comfortable here. Ruth, Ally and Jamie were here last week and kept me entertained. Andy also appeared on Friday which was a nice surprise.

There's not a TV here which I am surprisingly enjoying... I've spent most of my time reading the paper or working my way through some of the books I brought with me. I'm a big fan of Jane Austen and have just started 'A Weekend With Mr Darcy'. Most of these types of books are pretty rubbish but I read them anyway. I'm still pretty sore but the staples are supposed to be coming out tomorrow. Apparently it won't be as sore when they're out. Well, according to Teenie. We'll see...

One of the most annoying things that has happened since we came to London is that I've now lost most of my hair and eyelashes. I have no idea why as I finished chemo about 5 weeks ago! I think it makes me look really odd as I now just have wispy bits of hair, should I just shave it? Also, does anyone have any suggestions how I can make my face look a bit more normal? I hate not wearing mascara but with no eyelashes, I now have no choice. I'm unsure whether to just go for loads of eyeliner or if that will look odd. Any tips will be much appreciated!

The day before my operation Teenie, James and I started to write a list of things I'm going to do when I'm better. It's already two pages long and I've barely scraped the surface! I am really looking forward to having the energy to do all these things. I just hope it's soon.

Hopefully back in Glasgow on Tuesday, will probably write some more then. Good night y'all.

Thursday, 14 October 2010

London Baby

As you can see from the last post by my little brother James, I am currently down in London. It has been quite an intense couple of weeks.

We arrived on the Sunday (3rd October) evening and stayed with our friend Daphne that night. She has been amazing driving us to and from places and making great meals. Mum and I are presenting her with her gift tonight and I am very excited... We were due into the Prof's clinic at 9am the next day. He was running a bit late as there was a tube strike but we got in there fine. As always, he gave us a lot of time and attention and answered all the questions we had. He couldn't discuss the surgery in detail but was very honest about how the rest of my treatment would go. He said I should be prepared for a long and painful recovery but that I was in the best position for the surgery. He also said that if they have been successful in removing the tumours that my HCG should fall by half every 24-48 hours. That was the main thing really, it has to be monitored very closely. I had one taken right before surgery and others taken most days after. Furthermore, he mentioned that if the HCG didn't do this then it means there are still live cells and the tumour is still active. This would mean more chemo, but it would be a particularly nasty one which he called 'high dose chemo'. With this type you are stuck in a germ free room and not allowed to leave for 3-4 weeks. The side effects sound dreadful and I'm really quite nervous about this. However, we won't know if I need to get this until we get back the pathology which should probably be about 10 days after the operation. As it is nearly that time, we are desperately awaiting his call... We're going back into the clinic on Monday and I'm incredibly nervous. I'm far too scared to get complacent or optimistic about the situation as I don't want to be disappointed. My HCG has reacted the way we'd hope though. The reading before the op was 68 (so it had risen quite a lot since my last round of TIP) and the reading from Monday was 3. I'm just trying to keep positive about it all.

Later on that afternoon we met Mr Dawson and his team who would be operating on my bowel. He was an incredibly kind and friendly man who made me very confident in his ability. He explained to me that the operation would last about 4-5 hours, they were going to reverse the colostomy, join those parts of my bowel together, create an ileostomy (which he will reverse in 6-8 weeks if I don't need more chemo) and remove the tumour. He said the scar would run from my chest down to past my belly button. I don't think I realised it would be that long but it didn't really bother me. He really put me at ease with the operation, but he did explain to me how major this surgery was and that recovery wouldn't be pleasant. On Tuesday night I saw Mr Jiao (my liver surgeon) who popped in to explain the liver side of the surgery. He explained that it was quite straight forward (in terms of liver surgery) and his part would only take about 45 minutes. I thought that it was mental they could hack away at my liver and it be over and done with so quickly!

On Tuesday night I was terrified and that's when the nerves really kicked in. I've known the whole time that I would need to get an operation but it just seemed to fly in. It was an odd mix as I was excited for it to be over with yet really scared about the 5 hours I would be knocked out for.

So anyway, Wednesday came along and Mum, Dad, James and Teenie came in to take my mind off things. The nurses took me away to theatre about 12.30 and I was pretty freaked out. They put me under in the anaesthetic room and gave me an epidural to numb the bottom half of my body. It was a bit tingly but I don't think I really felt anything as I was so nervous! The next thing I remember was waking up in this odd room with tubes coming out from everywhere. All I was really aware of was a tube going into my nose and going through my throat which was incredibly painful. I was stuck in there for about 6 hours til they could find me a bed! I don't really remember much of that night but the next few days were awful. I did not anticipate how sore my stomach would be but it was just awful. It turned out that the epidural didn't work and neither did a lot of painkillers. I saw a lot of the Pain Nurse Specialists and none of them could come up with a concoction that worked. Teenie mentioned to one of the nurses that I had a high resistance to pain killers, particularly things like tramadol, which did nothing to relieve my pain. She mentioned that she had read some studies in ginger haired people having a strong resistance to them. Well, that's just great eh! As if being ginger wasn't enough. Anywho, they tried loads of different things (including Ketamine, bizarrely - apparently it normally works!) and eventually came to a medley of drugs that seemed to keep most of the pain at bay.

After the operation we spoke to the surgeons and it sounded like things had gone well. The tumour in my bowel had shrunk to the size of a walnut and the one in my liver was the size of a pea! The chemo had definitely done a great job. The physio was pretty tough and by Sunday I had managed to walk to the Day Room - it felt like quite an achievement!

Teenie and James left on Friday (as Teenie had her Grad Ball on Saturday) and Rona left on Sunday. Their departure made room for more visitors in the shape of Ruth and Ally on Monday and Jamie on Wednesday. As always, Ruth arrived with an array of treats and we sat about most of Monday and Tuesday reading through magazines and talking crap. It's been great having them here, the three of them have just been amazing.

I can't remember what day it was, but the first day I saw my scar I counted the staples... There is 33 in total! Pretty massive like. They're hopefully getting removed at the prof's clinic on Monday. I was released from hospital yesterday (Wednesday) which I was very pleased about. I thought it made more sense as I would get an actual nights sleep (away from annoying screamy lady) and I could get my tablets on time, which would hopefully make the pain relief easier.

We are staying at Daphne's which is lovely and relaxing. Ruth, Ally and Jamie came over today and we had a very nice afternoon. As I'm not able to really do anything (which I am very frustrated about) we've just been sitting about blethering and that is also the plan for tomorrow. The pain is still quite bad but I suppose that will just get better in time.

I feel like I've barely scraped the surface of my time in hospital but I realise I have written quite a lot! At the moment, all I can really think about is the pathology results. The prof said if he got them before Monday he would let us know. Anyway, I better go. Think I'm going to head to bed (one of the drugs I'm on makes me knackered). Thank you for all your prayers, messages and cards.

PS The 10k is on Sunday (which alas I cannot run) but my lovely friends are all running! Please sponsor them at www.justgiving.co.uk/team-mairead

Saturday, 9 October 2010

Mairead Macleod: Time Traveller. A guest blog by James and Teenie Macleod

Hey ya’ll, Teenie and I have taken it upon ourselves to give everyone an update whilst Mai is on a computer hiatus in hospital. So as you know Mairead went to London on Sunday for her operation on Wednesday. Teenie and I arrived on Tuesday on the four hour long train, me watching Its Always Sunny In Philadelphia and playing Plants Vs Zombies as Teenie listened to Harry Potter. Then as we arrived at Kings Cross Teenie could only really think about Mairead and was pretty worried, well that and the fact that platform 9 and three quarters was so close!
When we arrived at Charing Cross hospital we were surprised and happy to see that Mairead had her own room, it was a pretty sweet room which was made even sweeter with a gift given by Teenie and I. A gift enjoyed by Mairead, but adored by Mum aka Mamma Mac aka Notorious M.U.M.

By the time it came to the operation Mairead was very well informed of what would happen during and after the operation. However, as expected, she was very nervous beforehand. To try and lift her worries I informed her that she would basically travel through time, she would fall asleep and BAM wake up four or so hours later without even feeling it. I thought this was awesome, but I think Mairead had more on her mind. She headed off to the theatre at 12:30 after an emotional goodbye.

To pass the time Teenie and myself went to Westfield Shopping Centre but with a lot on our minds we didn’t stay for long and hung out with the parentals.  For some context of how we were feeling, Teenie went to a huge Topshop and only bought one small top… yeh.

At 5:55 we heard from the surgeon that the operation had gone to plan and there were no complications or surprises. We were told than we would be able to see her at 6.30.  After wandering around several wards we finally found where she was meant to be going, however she was still in recovery. We were given a room to sit in and told she would be there soon. After a very long 4 and half hours we were allowed into recovery to see her two at a time. She was, as expected, groggy and extremely tired but very happy to see us. We had been told that most people post op can be really confused and not even remember the next day, but Mairead was resilient as always and chatted normally. She was very tired but that didn’t stop her from wanting her blackberry. (loldad)

The next day Mairead was in a lot of pain despite all the pain-killers. She saw several doctors and anaesthetists (after much waiting) who finally were able to reduce the pain level but not eliminate it. She’s still not slept very much because the ward is very busy so A Cinderella Story, Princess Diaries 2 and Mamma Mia have been her company, and the Harry Potter audio book passed the time too.  
Today Teenie and I managed to get into the ward early to see her and say goodbye (we had to catch a train home). When we saw her she was still very tired and groggy…
BUT! This afternoon things are looking up, the physio came and she walked through to the day room which is a great step forward (pardon the pun).  So overall, the operation has gone really well and she is recovering slowly but surely.
At the end of our journey to London we saw a familiar face to both Mairead and all of Team Mairead. CHARLOTTE OFF BNTM!!!! Holla!  Teenie and Rona flipped out, which may have been related to the ripped dude in Abercrombie and Fitch, but I didn’t know who she was. This was a ridiculous thing because of course we all know that BNTM is (to quote Father Macleod) “moron TV”… and Susan was so much better than stupid Charlotte.

Mairead thanks everyone for their kind messages of support, prayers and the Chanel nail polish (holla!).  

p.s Teenie doesn’t know what the delorean is. Jamie will not be amused.

Saturday, 2 October 2010

Running around like demented ferrets

This is how Miss Goldberg described how manic the past week has been for us all! In short, it's been mental as plans have continually been chopped and changed. I had my PET scan on Thursday which seemed to go alright. They inject you with this radioactive dye and you're stuck in a room for an hour. They then take you through for the scan which is pretty similar to an MRI but not nearly as noisy! The past few days we've been in and out of Wishaw getting bloods taken and I had my scope this morning. Last night was not pleasant and my sleep wasn't great either. They give you a sedative during the scope which doesn't really seem to have affected me but the nurse said it could hit me later on tonight..

In other news, we're (Mum, Dad and I) flying to London tomorrow in preparation for the operation on Wednesday. Now that we actually have a date for it, I'm starting to get very nervous. Miss Goldberg freaked me out a bit yesterday as she said the recovery is going to be very difficult and long. She said I have to imagine her at the bottom of my bed shouting at me to do my physio and breathing exercises! Eeeek. I keep on thinking about all the awful things that could go wrong but I'm trying to think about the positive sides of it. I'm now just looking forward to it being over. I have so many questions to ask (which I've written down) and I'm hoping I get the answers when we go to the Clinic on Monday. We don't even know how long we'll be down for!

I presume I won't be updating this for a while and will probably be rubbish at getting back to people so I will apologise now! Thank you all for your kind words and prayers, you've all been very supportive. Anywho, I should go now. Speak to you all soon!