Sunday 21 August 2016

Finally a bit more news.

Hey everyone,

I had planned to write this post on Friday eve but really there wasn't much to update at all. We then had a mad hour on Saturday morning and I finally have a bit more news. 

I spent all of last week waiting to hear a date. I knew my notes had been on my surgeons desk for a week already and thought that at any minute I would have a phone call or email with a surgery date. By Monday afternoon I hadn't heard anything, so I emailed his secretary to see if she had any news. I was gutted when she didn't. My notes were still there and she wasn't sure when he would next be in as he was incredibly busy & on call. I did have a bit of a wobble that although my health hadn't gotten any better the urgency and momentum behind my surgery had gone flat. I emailed some of the nurses but they were either not able to help or didn't respond. I felt pretty helpless and had no one left to ask for information. 

The rest of the week went by & on Thursday I decided to give it another go and emailed again. My surgeon's secretary got back to me straight away, which was fab, but again my notes were on his desk, although she thought he'd be in that afternoon. Friday I heard nothing. 

On Saturday morning as I was catching up on the Olympics, I got a package come through the post. The package contained a letter booking me in for a 'capsule endoscopy' at my OLD hospital. The one I am no longer under the care of. It's safe to say, I couldn't believe my eyes. I literally, did not know what to think. The capsule endoscopy appointment I had booked at my NEW hospital had already been cancelled as they no longer deemed it necessary, & here I had been booked in at my OLD hospital for one. The package also came with some bowel prep, which I don't need to take with an existing ileostomy & really wouldn't do me much good if I did. 
My parents and I were dumbfounded with what the hell was going on. Eventually we decided to try and get in touch directly with my surgeon who 5 minutes late confirmed that he had booked a date for my surgery 'as soon as possible' but he was going to be away for the coming week. I should hear on Monday, from his secretary, exactly when that date it, but I'm assuming it's soon. What my old hospital is doing booking me into procedures when they no longer run my care/treatment is beyond me and I've lost the energy to try and work it out. 

So finally I have some kind of progress. Although not ideal, delays aren't necessarily an issue. If Drs had looked at my notes & test results, decided I'm not as ill as they first thought & delayed things. Then that's absolutely fine. What's scary is having delays when my health is no different, my notes haven't been looked at & I was previously being treated with a level of urgency, which then seemingly stopped. I really felt like I'd slipped through the net and no one was able to help. Evidently this hasn't happened, but the lack of communication meant I was left in the dark, which is scary. My surgeon is brilliant and got back to us on his weekend, it's just such a shame that we felt that was the only option we had left to get any kind of news. 

I've learnt from the past that, unfortunately, you do have to get in touch or remind the teams behind the medics that you are there to get results. I now 100% manage my own care and treatment, I never leave it to others to just handle it, just because they say they will. They all probably think I'm a complete nightmare, but there have been enough times when there have been delays, admin errors and miscommunications that I now don't worry if I'm annoying, I follow every last thing up until it's done. It's definitely caused a huge lack of trust. Fortunately, none of this has anything to do with the actual care I receive. The majority of Dr's, surgeons, nurses & health care assistants I have had contact with have provided excellent treatment and care. I really do trust the judgment of my surgeon, new consultant and old consultant and have complete confidence in them. It's just such a shame that behind the scenes, things don't always run so smoothly. I'm sure this is not always the case and that there are brilliant people, working very hard, over stretched jobs, behind the medics, perhaps I've just been unfortunate. 

The stress and anxiety of waiting for that phone call, has definitely taken it's toll. I'm sleeping really poorly, with me sat wide awake most nights until 3 or 4am. The emotional roller coaster of having to go through this kind of surgery and life changing process is hard enough, let alone with the worry of getting your voice heard in the system. I've also had to deal with other seriously stressful stuff, the death of Harry dog & a housing deposit dispute from my old Cardiff house, which really haven't helped. Finally, this weekend, with a date set and questions answered, I feel I can take a breath and focus on getting through the surgery itself. 



Flowers from my Dad 

The week hasn't all been doom and gloom. Some incredible friends and wonderful family have really been there for me. Emily & Cara sent gifts, flowers, chocolate & activities to keep me entertained in hospital and I got out the house for an evening to see Cara & Wyn, who took the time to check in before heading on their holiday, which was so nice. I don't think they realise how much I appreciate it. My parents are also, as always, amazing. 
The Olympics has also kept me distracted and entertained, I've watched coverage pretty much 24/7 and loved every minute of it. The inspirational come back stories, showing sportspeople fight injury and illness to get back to Olympic level fit, has really spurred me on, to recover fully and quickly from this surgery. The likes of Siobhan-Marie O'Connor who won a silver medal in the swimming, despite having Ulcerative Colitis is incredible. I've found it so motivating and it has really boosted my mood each day. really don't know what I'm going to do with myself now that it's over. 

Hopefully, the ball is now rolling (a little faster) and I can get this surgery over and done with. 
Will of course, update soon. 
XXX


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