So I promised you a round up of what happened in ICU nad during my surgery. It will be a cut down version but here we go. I ended up going in a day early which I'll be honest is not a big deal but to someone scared out of their mind about going in for this op it absolutely killed me to miss out on last night at home. 

Everyone was incredible from start to finish. I went in a day early to have an infusion that would hopefully avoid too much bleeding which was our main worry. The next day my surgery was second on the list and I was away by 10am. There was a lovely surgical nurse who coordinated my whole stay and medications etc and I can honestly say she was incredible. I felt so safe and cared for. She offered to come with me until I'd been put to sleep and I jumped at the chance. She also gave us her mobile number in case we needed anything while she wasn't there, as well as updating my parents on how I was doing. Completely beyond the call of duty. 

All the team came to see me in pre theatre and reassured me and then I was literally in their hands. Thankfully the operation went very well with none of the problems we were concerned with. The tumour was removed, lymph nodes too, and very clever, delicate things were hooked up to other things and put back together by an immensely wonderful surgeon and his team. I was taken to ICU and was very in and out of it but but just so thankful to be alive. 

After that, it was my turn to put in the work to compliment the chance I'd been given. I was standing the day after surgery and casually trying to walk to a chair which impressed and terrified staff in equal amounts. I got rid of my pain button and didn't require any bonus pain relief for the rest of my stay, no one was amazed more than me by that. If you're a long term reader you know I've struggled a lot with ICU before and the team were well aware of that. This time however was so completely different. It was still major surgery but my body was so much fitter than at transplant that I could move, get up, walk about etc without it being the epic task it was before. I was tired from all the drugs and weak as eating isn't allowed but otherwise it felt far easier than I could ever have expected. I had a neck line, artierial line, as well as my picc line; also two nasal tubes one to drain and one to put medicine down. I also had a drain in my tummy which randomly drained fluid but occasionally liked to burst open over my legs and feet! 

All of these things left me pretty quickly (apart from my trusty Picc Line). The worst by far were the nasal tubes, they caught in my throat and made me feel sick, they also rubbed my throat when I talked and made me fairly miserable after a few days. I basically begged anyone mainly my surgeon if I could have them out, every day but they wanted to be absolutely sure I didn't need them. One day after many persuasion attempts my surgeon came in said "let's get rid of them" and literally there and then pulled them for me which I think made a couple of his colleagues feel slightly sick! After they were gone I felt so much better! 

The wonderful nurses do not get enough praise for what they do. Medically and personal care wise they are saints and made me feel dignified and like a person not a patient. The ICU unit was incredible, they even have a balcony for patients and it can take ages to get everything portable to go but they were always so keen I go out even for 10minutes to enjoy some fresh air. It made a huge difference to well being and often those who couldn't go out had their beds turned to face the doors and windows. It was my birthday two days after my op and the nurses wrote happy birthday on my white board, signed a card for me AND bought me a gift which was such extraordinary kindness. My dr came in all excited. I was on a plain liquid diet which is pretty boring and he told me how he knew it was my birthday, so he'd been to the shop, rejected things I couldn't eat for this or that reason then produced a chupa chup lolly because I could eat it and it's a flavour other than water! It cost not much but to me all the kindness of the world was in that lollipop, the thought that had gone into it. I was so touched. 

Liquid diet lasted a long time as my surgeon was rightly, ultra cautious. After clear fluids I was allowed other things like juice, ice cream, ice lollies, and soup. Then a few days after that soft foods like baby food fruit pots, rice pudding, yoghurt, and mash potato. I spent majority of my stay in ICU as I had a dodgy tummy and therefore needed a room of my own to move to. In the end I think I spent 4 days on an actual ward. My own room with my own bathroom was bliss! It also had amazing views of London as I was on the 5th floor.A great stepping stone to getting home too. A huge boost came from Lucky being allowed for a visit! I was delighted!

The doctors were really happy with everything and by some miracle I got home13 days after my surgery, that's one day less than a "normal" person and over a week earlier than I expected for me! 

I have to admit I was slightly shocked by the wound as it was placed differently and much bigger than I expected. I was upset but if I'd needed 50 cuts to save my life I would have had them. It had 36 staples which were fun to remove but I'm much more used to it now and know it will fade. 

As I mentioned last time my lymph nodes did contain cancer cells which isn't the best but were removed during surgery. My dreaded scan came back clear. The relief was palpable in the room! I am currently 3 weeks into my 9 week post surgery chemotherapy. It is far harsher this time as I was told it would be. I'm being given a special drug (again my wonderful team managed to apply for this when it hasn't been used in these circumstances before) which is boosting my platelets so I've had 3 weeks chemo without any break. This is brilliant but again, makes it tougher on my body. 

So that's my update for now. Just quickly, my brain is finding it very hard to focus on anything right now but I do have lots of post ideas and the dream is to have a few written and scheduled to post! I really miss writing here and I hope some of you miss reading! It feels a bit erratic what I post now but all I can say is this is what's going on now with me!