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The light at the end of the tunnel is a train

Last week was a busy and pretty crappy week for me health wise. I had to go and have blood tests done with the nutrition nurses and I had two hospital appointments; one with the gallbladder surgeon in Nottingham and the other with colorectal surgeon at St Marks. I was hoping to have at least one surgery date to write in the diary following these appointments but I came home empty handed on both occasions. Here’s what happened.  I began noticing over the last few weeks that I’ve started feeling really crappy. I’m feel lucky to have been at home for the last 6 months and I have been the most well I have been for years but it felt like things had shifted slightly recently but I couldn’t quite put my finger on it. But years of being sick means I know my body and I can tell when something isn’t right. I have been feeling permanently exhausted and having way more bad days than good. I’ve gone back to spending 2, 3 or more consecutive days in bed, unable to do anything but watch tv and sleep.
Recent posts

Holiday

I’m back from a week in Fuerteventura and it was amazing. This was the holiday I never, ever thought I would get to go on as the last couple of years my health has been so bloody awful. I couldn’t really talk about it much before we went as we were flying out to surprise Hubby’s brother. He had turned 40 a couple of weeks ago and his wife had booked for them to go on holiday as his gift. Almost a year ago when she booked I had joked that we could go out too and be the babysitters for my niece and nephew and my sister in law was up for it. But having been so poorly I didn’t think we would ever actually manage to go. That was until 6 weeks ago when we booked it after I had managed to stay out of hospital for a while (Do you know it’s over 3 months since I was last in? I can’t quite believe it myself!)  So we managed to surprise my brother in law and we had a fantastic week all together. And while I am grateful for the week in the sun with my family I have to be realistic and say that pre

Holiday booked!

You may know that me and Hubby really wanted to take the kids abroad this summer. But because of all my hospital admissions and how difficult it was to get travel insurance that dream died a death and we ended up in Whitby. Now don’t get me wrong, I know there’s plenty of people out there that would give their right arm for a weeks holiday anywhere, including Whitby, but for me it felt like I had failed again.  For the last couple of years I had got a bee in my bonnet about us having a holiday of a lifetime in Summer 2023. Both the kids were doing exams which meant that by the end of June they would be finished and we would be free to go away before the prices skyrocketed during school holiday times.  We first talked about going to South Africa as the netball World Cup was taking place and Big Girl said it would be  a dream come true to go. We thought we could team it with a safari and have an amazing time. But when we saw the temperature in July in South Africa we knew the heat would

St Marks update and Covid strikes again

Lots of people have been asking me if I’ve heard anything from St Marks after the tests I had done in July. Up until recently the answer was no. But last week I got an email from them to say I had a new appointment letter. When I opened it this is what I saw… I think Hubby is disappointed that it’s so far in the future but at least now we have something in the diary. I think I’m more relaxed because the last few months I’ve been pretty well. If I were in hospital here in Nottingham or at home in agony then I don’t think I would be too pleased at having to wait until February. But as things stand I’m happy to keep hospital appointments to a minimum and enjoy the run of good luck I’m having at the moment.  It does almost seem too good to be true that I’ve been out of hospital for over 2 months and at the back of my mind is that little voice telling me ‘You must be due an admission soon. You never stay out of hospital for too long’. I’m trying to ignore that voice and focus on having time

New line- second time lucky

I finally got a new Hickman line on Friday and I've made it home after 12 days in hospital.  I got all excited on Thursday afternoon when the nurse came to tell me that Interventional Radiology (IR) had just called to say that they were able to squeeze me in for a new line. There was a mad 10 minute scramble to get me in a gown and complete the theatre checklist before the porter arrived but then by 3.30pm I was down in IR. But when I got there they weren’t really prepared for what a difficult case I was going to be. They suggested having the line inserted with just local anaesthetic and no sedation.  Ha! Absolutely no bloody way that was happening.  I’ve had 15 Hickman lines in the last 10 years and each insertion creates more and more scar tissue in my chest wall from where the line gets tunnelled. The last line had to be inserted under a general anaesthetic because it was too painful so there was no way I was agreeing to have this one put in without sedation. Wanting sedation cr

The wrong size line

I’m on the M1 heading back to Nottingham after a road trip to St Marks to get my line repaired. But this is me, and as usual it wasn’t a smooth ride. More like a bloody shit show. So what happened? Let me tell you… After being admitted to QMC in Nottingham on Sunday with a broken Hickman line I was taken down to Interventional Radiology on Monday afternoon to get my line repaired. Firstly, I couldn’t believe it was happening so quickly and secondly I didn’t want to get too excited because, well it’s me, and usually things don’t go according to plan. And sadly I right to rein in the excitement.  When the doctor came to consent me for the procedure it was for a replacement, not a repair. I assumed he had made a mistake so I told him I was there to get my line repaired and was definitely not there for a new one. He looked at me and said “I hate to be the bearer of bad news…” and that’s a sentence that never bodes well. He then went on to say that they didn’t have any repair kits and that

Home for 36 hours…

I’m writing this post from A&E and I’m so sad and frustrated and pissed off. I only got discharged from St Marks on Friday and already I’m back in hospital. It feels like the universe is against me at the moment. As it is we’ve been trying for bloody months to book a holiday but either had trouble getting travel insurance or I’m never out of hospital long enough for us to feel confident we will get away. We were going to do a last minute booking and go next weekend but it looks like that plan has now been well and truly scuppered with this admission.  So why am I in A&E? Because my bloody Hickman line has broken. When I disconnected my feed I tried to change the bionector (as it has to be changed every week) but the bloody thing was stuck. This has happened before, lots of times, so exactly as I’ve done a million times before I gave it a bit of a tug. Normally this would loosen it and then I can change it as normal but this time the green part of the line came away with it 😱 a