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One year anniversary

  Today marks two important milestones: firstly my Hickman line is 1 year old and I have managed to stay out of hospital for a year too! I think this is the first Hickman line I’ve had that has made it to its first birthday, so this is quite a big deal. Most people have their lines in for years and years with no problems but in the past mine have blocked, split or become infected causing me to rack up a grand total of 17 lines in 10 years. But maybe my luck is changing… And the fact I’ve been at home without any inpatient hospital stays for a whole year is a milestone I didn’t think I would see.  2019-2023 was a particularly difficult four years where on average I spent more time in hospital than I did at home. And even when I was at home I was so ill I couldn’t get out of bed. There were some times during that period when I didn’t think I would live to see another Christmas because I was so, so unwell and I couldn’t see how I would ever recover. It was a long, hard slog and there were
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Take That and living life

It’s been a while since I wrote a post. Not because I’ve been poorly and in hospital but because I’ve been well and living life! Don’t get me wrong, I haven’t magically been cured and it’s not all sunshine and roses but things are probably the best they’ve been in years. I’ve managed to stay out of hospital (other than for appointments) for over 9 months now which at one point seemed like an impossible dream. I’m even daring to wonder if I will make it to the magical one year mark but it feels like I will jinx myself if I think about it let alone talk about it!  So what have I been doing? I’ve done what most people would consider the boring, everyday stuff that I so desperately wanted to do when I was an inpatient. I’ve been to the shops, sorted out some life admin at home, planted some flowers in the garden and planned a summer holiday. I’ve watched Big Fella play football, went to a gig with Big Girl and to the cinema with Hubby. I’ve sat down to family meals, had breakfast in Wether

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.

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