So today I’m still no better, the drs, nurses, my family and myself all feel that all the medication has been given the best possible effort and it’s not working for me, so surgery is the right option for me now.
I’ve seen my consultant and my specialist IBD nurse and they have explained the surgery and what’s going to happen now.
I’m still at the Hallamshire and I’m just waiting now for a bed on the urgent surgery ward at the Northern General. Once I get a bed Ill just be on a priority waiting list for surgery so it could be any time in the next day or so.
My IBD nurse has been to measure me for where my stoma will be fitted… It’s the big black permanent marker spot!
You can read a bit more about the type of surgery I’m having here
So it’s just a waiting game now! It could be any time in the next few days. I’m feeling an odd sensation of fear and relief. I’m scared about the surgery, about the pain and any possible complications. But I’m relieved that I can see the light at the end of the tunnel.
Surgery is a huge decision and I just want to make sure that I get across that I know it’s not for everyone. For ten years I have lived with this disease, I’ve tried the meds, I’ve lived through so many flare ups and hospital stays. I have cried too many tears and been through enough pain, humiliation and embarrassment. I have dealt with side effects of meds from moon face to palpitations, depression to insomnia.
And so now is the time to move forward. Get this bowel out and move my life onwards and upwards!
I’m still going to try and blog, but if I can’t then Ill make sure Timm updates you all to how things are going.
If anything changes later then Ill possibly update myself, but till then I’m going to try and rest up as I’m feeling totally wiped out and I need to prepare myself physically and mentally for the upcoming days.
Just wanted to add another quick post today…
Tonight three friends came to visit me and bring ‘girls night’ to the Hallamshire. I’ve been feeling so low and seeing their smiley faces and bags clinking with non alcoholic wine (real wine glasses and everything!) posh crisps, gossip and homemade flapjack just made everything a little bit better!
I feel so blessed to have such awesome friends. Thank you ladies, you have out a smile on my mardy face tonight!
I know I’ve said it before, but I will say it again, every message, every text, every funny photo or kind word, every night time game of scrabble, every piss take, every bum joke… It means the world. Thank you all so much.
Sunday in hospital. I didn’t sleep well last night, I was woken three times by doctors and nurses as they were concerned about my blood loss. They’re still wanting to wait till tomorrow though to give me the full amount of time on the IV steroids.
I can’t believe I’ve been here since Tuesday! People keep telling me to enjoy the rest but that’s so much easier said than done. I feel dreadful and I’m on the loo 12+ times a day. I’m constantly being prodded with needles or having blood taken and my concentration is shot!
I keep trying to read or watch a film but I just can’t stop my mind from wandering. I’m just wishing for tomorrow so Ill know for definite what the plan is. It’s the waiting that’s so hard. I’ve been really tearful today, a mix of the steroid side effects and just generally feeling down I think.
I’m on my third canula of the week so they can administer the IV but unfortunately my veins are starting to suffer and it took three attempts to get one in today. I’m starting to look like a pin cushion!
As there’s just not that much to comment on at the minute, if anyone has questions then please feel free to ask away and if I can answer, I will…
Feeling a bit disgruntled today as when I moved onto this ward there were signs saying visiting hours were 2-3.30 and 6-8. We asked as on the other ward it was 2-8 and were told the same applied on this ward. Timm also checked that the kids were ok to visit and were told it was fine.
Today Timm and the kids came at 4pm and we were asked to leave. Apparently patients have complained of being unable to rest so the visiting hours are now as signposted. But no one said anything before! We went and sat by the lifts as the kids and I were upset and went past so many beds that still had visitors by them.
I understand that the staff need to ensure patients are being cared for well but surely it has to be one rule for all?
I feel like complaining about all the times I couldn’t rest rather than just sucking it up as I have been! Maybe Ill complain about the man who has what sounds like chipmunks singing Country Road take me home in a techno style as a ringtone that goes off full blast 20 times a day. Or the man who keeps setting off the alarms when he tries to sneak off for a fag! Or perhaps the nurses who pranked one another today as one is leaving and sprayed shaving foam all over her and ran up and down the corridors shrieking!!!
Urgghhh sorry!!! Rant over! It’s just hard enough being here and when I’d looked forward to seeing Timm and the kids all day and then had to leave I was devastated.
In nicer news, Timm and the kids made me a photo album/scrap book with loads of family photos and nice messages in it. That’s cheered me up no end and no they’ve gone I’ve just had another look through and another little cry. Here’s a few snaps from it…
Looking forward to a visit from my awesome best mate Caroline tonight, she has been a star in helping out with the kids, visiting me and just generally being a fab support.
Tomorrow should be news day – finding out the plan to move forward. If I can’t post Ill get Timm to keep you informed!