Going home, staying in

After meeting with Mr E last Thursday I was due to be discharged the following day. I was so excited and Hubby even took one of my two bags home with him after the meeting so I wouldn’t have so much to pack up the following day. But then in the night I started to go hot and cold and was feeling really rubbish but I didn’t tell anyone as I was so determined to get home. But then first thing Friday morning I started vomiting and that was the end of my discharge dream.

I spent the next three days in bed, very, very unwell. My blood pressure was very low; at one point it was so low that I wasn’t allowed out of bed unless I had a nurse with me as I was feeling dizzy and on the verge of collapsing all the time. You know you’re in a bad way when the drs visit you at the weekend. Luckily the gastro registrar from the ward was oncall over the bank holiday weekend so he came to see me each day and delivered the news that I needed stay in a bit longer.

After the bank holiday normal ward rounds resumed and the ward sister asked me whether I honestly thought I could carry on the way things are until September. I cried and said that I didn’t think I could so she agreed to contact Mr E to see if he could bring forward the date of the surgery.

Unfortunately he only operates once a week and the next couple of weeks his schedule is jam packed. Then he’s away on annual leave, so the original date of the end of a July is the earliest he can operate. So now I think I’ve agreed to move the surgery to July but I’m not really sure. What I do know is that if things carry on as they are there’s no way I will manage to get down to Cornwall on holiday (and the thought of ending up in hospital down there is scary) and there’s not even any guarantee that I will even make it home before the surgery. The thought of being in here for another 6-8 weeks is enough to CCXX me but for now I’m literally taking it one day at a time.

Part of the biggest problem is controlling the amount of pain I’m in. Because I’ve come off all the opiates the team are reluctant to put me back on them but while things have been bad I’ve been having sub cut morphine. This is morphine injected just under your skin which the nurses are allowed to do, instead of in a vein because only the drs can do that.

This is what’s known as a sub cut butterfly and the nurses insert the needle into the yellow end piece and inject the morphine. It stings like hell but it only lasts a few seconds. I’m able to have this every 2 hours but usually after about an hour the pain is back so the gastro consultant has asked the pain team to come and see me.

The pain nurse came and suggested I try ketamine- yes really! I have had ketamine infusions at UCLH in the past but I’ve never had it as a regularly given painkiller so I didn’t know how I would react. I needn’t have worried so much- it didn’t do a thing. I was still needing to have the sub cut morphine on top of the ketamine so after 2 days they decided it wasn’t working and stopped it.

So now I’m on sevradol tablets which is what I take at home for pain. Now I’m not throwing up I’m able to tolerate tablets and getting off the morphine injections is a step closer to me potentially going home.

I did manage to have some ‘home leave’ this week which was bloody amazing. I managed to spend a couple of hours with my parents in their garden and then Hubby picked me up and took me to his parents where all the family was. I got to see my brother and sister in law and my niece and nephew who live in Liverpool as they were visiting during half term. I hadn’t seen them in over a year so it was amazing to not only be able to see them in person and to be able to hug them! I also saw all my other in laws and nieces and nephews as well as my own kids and my dog 🐶 I purposely didn’t go back to my house as if I did I knew I wouldn’t want to leave again.

I was out of hospital from 3.30-9.30pm and when Hubby dropped me back I was exhausted and in pain but my God I was happy. I didn’t realise how much I needed to wear proper clothes and be around other human beings. I’ve paid for the good times though and I’ve had what me and my friend Kitty term an ‘energy hangover’. I’ve barely been able to move since Wednesday and have struggled to get on top of my pain and get enough sleep but believe me it was worth it and I would do it again in a heartbeat.

Light at the end of tunnel

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 minute. Th

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.

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

More than just a bag lady

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