Thought it was time for an update!
So, at my last post I had just met with my surgeon who revamped my tests plan & aimed for my surgery to be in August. A week after that appointment at 7:30am Mum and I arrived at the hospital ready for my investigation under sedation. The previous day, I had spent hours emailing and calling many different departments as my name was not on the surgery list for the following day. I was told it wouldn't be going ahead but fought my corner and chased it up enough that by 6pm they were able to confirm it would be going ahead after all. It turned out my notes had not been given to the correct people and no appointment had been made. I've grown to learn, unfortunately through far too many bad experiences, that you often have to fight and stay on top every aspect of treatment/referrals/admin tasks. Although this time it ended well, it definitely causes a huge amount of stress at a time when my anxiety is high and I'm feeling pretty rubbish.
Upon arrival the nurse couldn't quite work out who was having the procedure, me or Mum. When I popped my hand up, she looked a tad confused before asking my age. When I told her I was 24, she looked relieved, and replied "Oh good, because we don't do under 16's in here". Brilliant!
The area you wait in before the surgery was having building work, meaning that no friends or family were allowed in with you, whilst you waited to go through to the operating area. For me, this wasn't too bad. I wasn't particularly nervous, as no actual op was occurring, I knew exactly what to expect and sedations don't really scare me. For others going in, however, you could tell it was a really big deal. Some of them were having big surgeries and clearly needed their loved ones their before hand. I found it quite hard watching and listening to people try and keep calm, on their own. Once there and on my tod, I had to change in to a gown and have my obs done (blood pressure etc.), the anethetist popped in to go though the 'keeping me asleep' plan followed by one of my surgeons fellows who went through what the procedure would look like. I was only having an 'investigation' so there was nothing too complicated to go through.
I was the first one going in to the operating theatre, so I luckily didn't have long to wait. In the anesthetic room, I chatted away to the nurse who was shocked at how small my hands are and laughed at the nurse thinking I was maximum 16 years old, reassuring me that yes I look young, but definitely not that young.
The next thing I knew, I was awake and in recovery, lying on my side. I had my painkillers topped up, which I enjoyed a little too much and stayed there for around an hour before being wheeled back on to the day surgery ward. Here they like to make sure you can wee, check the op/investigation site to make sure any bleeding has stopped and generally make sure you're back on your feet and ready to go home. At this point I was super sleepy but ready to go, my surgeon was still in theatre so I wasn't able to speak to him but I was told everything had gone to plan, biopsies were taken and he got all the info he needed. A few hours later they set me free and I was able to meet Mum at the ward entrance again. I left a little confused at what the plan would be going forward, the nurse mentioned an appointment with a different surgeon, who I had never heard of, but they couldn't tell me much else. Recovering from the procedure I couldn't believe they originally going to do it with sedation rather than general anesthetic, I am still so incredibly happy that this decision was made.
In recovery, loving the painkillers
The following day, still not being able to drive following the general anesthetic, it was Dad's turn to drive me back up to the hospital for my pelvic MRI. For the second day in a row my eating was limited, so I was starving and grumpy but not phased by my millionth MRI. That, again, all went to plan!
Nearly two weeks on from this, not much has changed. My temperature goes up and down but doesn't seem to be peaking too high, which is good. I'm very tired, all the time, and have good and bad days in regards to pain. I seem to gradually be losing weight and my appetite is a little lower but I'm definitely still eating (nothing can stop my love of food). TMI Crohn's symptoms are the same, painful and horrible. Mood wise, I think I've got my head around it, I get frustrated and angry with the delays, lack of communication and admin errors but I'm doing okay. The surgery has meant I've had to cancel a trip to the Caribbean in October, which is truly gutting but I've started making lists (obviously) of things to do when I'm back on my feet.
I now just want it to happen, get it over and done with, playing the waiting game is not much fun but at the same time it feels really odd to be wishing for such a nasty, life changing, hardcore surgery to happen. I don't want it and want it, at the same time. There has been a lot of hassle trying to get answers about what is happening next and getting to speak to the right people, but on my last update, this morning, I was told that my surgeon had all the results on his desk and a plan was going to be made. For me, this is one of the worst bits, I hate the not knowing. He had previously said it would be August, but we are well in to the month and I've not had any news, so I'm not 100% sure yet when it is going to take place. Hopefully I will be told more in the next couple of days.
In the mean time, I'm sleeping, trying to keep on top of work and generally taking it very easy. I think it's hard for others to understand the on going, seemingly never ending process of this waiting. I'm not feeling better & it'll be months before I'm back to my old (hopefully better) self. I feel like a complete drag when people ask how I am and the response is no different to the last time, having no news is so annoying.
Unfortunately, we've also had some really sad news, with one of our family labradors, Harry, having to be put down. He had a very aggressive cancer, with a tumour on his face, so we knew it was coming, but in the end, it was much quicker than expected. I feel completely devastated, right now, it's the last thing I needed and think it has effected me a lot more given everything else that is going on.
The good news is, it's all up from here! Hopefully in the next few days I will have some news, my control freak ways will be satisfied and I can start to plan moving forward! The Olympics have also been a brilliant distraction and has given me the best TV to get in to 24/7, which is great. I've also gotten out the house to see Finding Dory (which was SO good) and a couple of hours at a leaving BBQ for my friend heading to the RAF, as well as light strolls with the dog, all things which have made me feel a lot better.
Will of course, continue to update xxx