More than just a bag lady

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...

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 t...

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 ...

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 s...

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 t...

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 ...

So I’m currently in St Marks hospital at Central Middlesex Hospital (CMH). It’s the first time in about 5 years that I’ve been an inpatient under St Marks but even then that was at Northwick Park Hospital (NPH) so it’s my first time at CMH. The last few years I’ve spent an awful lot of time as an inpatient at QMC in Nottingham and I’ve gotten used to the staff and routines there so being in a different hospital is a new experience. So how different is St Marks to QMC? The hospital:  CMH is in North Acton and all around are flats, shops and according to the sign when I drive past, Europes biggest industrial estate. There’s no A&E; only an urgent treatment centre. It has a small Costa and WH Smith in the main entrance and a restaurant on the 2nd floor that’s pretty small and serves a limited menu. Just across the road is a Greggs and an Asda is a couple of minutes walk away. Although it was opened 15 years ago it still seems like quite a new hospital with everything shiny and cle...

I’m sat writing this blog post in St Marks, the specialist bowel hospital in London. So much has happened in the last few weeks; it’s all been a bit of a whirlwind. But I finally feel like there is some hope at the end of the tunnel. Let me tell you why.  At the beginning of June I was admitted yet again to QMC in Nottingham with huge amounts of pain, my bowels not working properly and just feeling generally unwell. I had only been home a couple of weeks since the admission in May but I had been feeling so rubbish most of my time had been spent in bed. I had tried everything I could to stay at home but the pain had become so bad I was barely able to stand or take a few steps on my own.  I had expected to maybe be in for a week or two to get stronger pain meds and get back on my feet but I ended up being in for almost a month. They put me on morphine injections and ketamine but then stopped them when my heart rate dropped to 30 beats per minute and my breathing to 7 breaths a m...

I’ve just come home after another 2 weeks in hospital. To say I’m fed up and drained would be an understatement.  I started feeling poorly again about 3 weeks before I was admitted, around the middle of April. I was getting more pain, feeling more fatigued than usual and inside nothing was working quite right. Because I’m on the adalimumab injections I have to go for routine blood tests every few weeks but after my most recent one I got a phone call from the IBD nurse the next day. She said that all my liver results were elevated, that they needed repeating in a few days time and I couldn’t have my next injection until they had reviewed the results as if they stayed high I might need to stop taking them. But it wasn’t a huge surprise as my liver hasn’t been 100% for some time. Unfortunately being on TPN can cause liver disease/damage and a side effect of the adalimumab is also liver damage so I figured the two combined probably wasn’t good news.  It was around this time that I...

Last Thursday I had an appointment in London with a private colorectal surgeon. But that’s not really the start of the story; for that we have to go back 4 weeks earlier when I ended up in the clinic of Mr E, the surgeon in Nottingham.  I had received a NHS text reminding me of an appointment at the Treatment Centre in Nottingham. Thing was I didn’t have an appointment in my diary, nor did I have a letter. But I assumed that I had either misplaced the letter or forgotten to write the appointment in my diary (or both) so turned up on the said date. Usually I see my gynaecology team at the Treatment Centre every 3 months for an injection that puts me into chemical menopause to manage my endometriosis. I couldn’t remember when I had last had my injection but the 3 month mark had to be approaching so I assumed that the appointment must be for that. But when I went to the clinic they had no details of an appointment for me that day. It was only when I got my phone out to show them the t...