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