More than just a bag lady

Now my bowels are moving, albeit sluggishly and begrudgingly, the focus has shifted onto what needs to happen to get me home. I need a new Hickman line inserting, my Picc line taking out and I need to move off IV medication onto oral. And of course I need my bowels to keep moving! I’m on countdown to my holiday in Cornwall and the reason this holiday is so important is that while we are away it’s Big Girls birthday. In the past I’ve been in hospital and not well enough to be discharged when our summer holiday has rolled round and Hubby and the kids have gone without me. It’s horrible but the way I look at is that there’s no point in the whole family missing out just because I’m in hospital yet again. But I cannot miss this holiday because if I do it means I miss her birthday and I think that would break me and Big Girl.  So on Mondays ward round these were the discussions I was having with Dr B. One of the other things that needs to be sorted out is the hospital needs to get in to...

I don’t know what to say...I feel completely and utterly broken.  I was full of hope that on this mornings ward round the consultant would come armed with a plan.  There is no plan.  I think I’m destined to be here forever.  The bowel obstruction isn’t life threatening so the surgeons won’t operate. The gastro consultant said there’s nothing he can do to help. I’m trapped in this hospital bed by a body that doesn’t work and an NHS that’s overwhelmed. I’m trying to find the light at the end of the tunnel but at the moment it’s pitch fucking black.  Well, that was 10 days ago and I’ve not had the energy to blog since. This bowel obstruction has completely floored me and I’ve been in so much pain. When I wrote the beginning of this post I had been obstructed for over a week and was hoping that the doctors would have a plan to sort things out, but I felt completely let down. When I told Hubby he was livid that the consultant had told me that “this is just the way th...

I’ve been quiet this week cause I’ve been really poorly. On Monday I didn’t feel good so decided I would have a lazy day and I slept for most of it. But then by Monday evening my pain had gone through the roof and I was in agony. I didn’t sleep a wink and by Tuesday’s ward round I was in the bed crying in pain. The doctor increased my pain relief and said we’d “need to ride it out”. But instead of getting better the pain just got worse and worse to the point that I couldn’t get out of bed and make it to the loo which is three steps away without the nurses helping me. And talking of the loo I realised I hadn’t opened my bowels since Sunday. So this was looking like another bowel obstruction. I spent Wednesday in agony and when the consultant saw me on Thursdays ward round he couldn’t believe how unwell I was. He said he would get straight on the phone to the surgeon and tell him he needed to ‘sort me out’ because this could not continue. The surgical doctors came to see me and decided t...

Yesterday around 4pm my cannula tissued (which for the non medically trained amongst us basically means the vein gave up and died). This was just as I was about to have my IV antifungal medication followed by my IV antibiotics. The nurse immediately requested a new cannula for me- it’s all done on ‘the pod’ which are their handheld devices that link to the hospital tinterweb. She specifically put that I would need a doctor or anaesthesist to insert it and they would need to use the ultrasound machine because my veins are so bad. I’ve been told by multiple doctors and anaesthetists that my veins are tiny, they’re not straight, they’re scarred from having multiple cannula insertions and they’re very tough so it makes inserting a cannula really, really difficult. It wasn’t until a few hours later that a clinical support worker turns up, minus the ultrasound machine, to try and cannulate me. Now I’m happy to let anyone have a go because you never know who will get lucky but after 5 attempt...

Despite my best efforts to save it my Hickman line had to come out. I was told that leaving it in could kill me so I didn’t really have much of a choice! This being my 12th Hickman line I’ve obviously had 11 removed in the past so I know the drill. Because it’s done in theatre one of the surgical doctors came late this morning to consent me for the procedure and even though it’s done under local anaesthetic an anaesthetist came to go through some questions ‘just in case’.  The porters came and took me down to theatre. Knowing that there can be a delay I took a magazine down with me and it was a good job I did cause the surgeon was running 20 minutes late. After they did all the safety checks where I have to confirm my name and date of birth a million times the surgeon was ready to start. He placed a blue surgical drape over my head and body which along with wearing a mask can make you feel a bit claustrophobic. The area around my Hickman line was left exposed but it did cover the m...

I hate eyes, looking at other people’s eyes, talking about eyes, basically anything to do with eyes.  As much as I really didn’t want to get my eyes tested I also didn’t fancy going blind so I put my big girl pants on and got on with it.  I had to go down to eye casualty and was dreading seeing people with manky eyes or with things sticking out of their eyes but to my relief everyone sat in the waiting room appeared to have normal looking eyes. Despite having an appointment I still had to wait for an hour and a half before I was seen by a nurse. She asked me some questions and did the ‘read out the smallest line you can see’ test.  She also needed to measure the pressure in my eyes and came at me armed with a handheld machine. I kept moving my head and blinking so it took her more attempts than she had anticipated. But the worse was yet to come- the eye drops. Every time she came near my eyes with the eye drop bottle my eyes accidentally closed or my head accidentally m...

In between yesterday’s games of Uno one of the oncall doctors came to see me. As a general rule seeing a doctor on the weekend is not a good thing cause it usually means you’re either a) really poorly or b) about to get bad news. I didn’t feel poorly so wondered what he’d come to see me about. He said he’d come to update me on my infection and I breathed a sigh of relief cause it’s only a line infection, right?  Er, turns out it’s not that straightforward.  Usually line infections are caused by bacteria and are treated with IV antibiotics through a cannula and also going directly into the line, known as a line lock. This is what has been happening over the last couple of days but on Saturday one of the nurses dropped into conversation that microbiology had just called and they wanted another drug to be given which was an IV antifungal medication. I don’t think she expected me to pick up on the fact it was antifungal and seemed quite surprised when I asked her outright if I had...

Today I’ve had a right laugh playing games on the ward with the nurses. In the week when the nurses have had a bit of downtime we’ve been playing Dobble, which apparently became a ward favourite during lockdown. Yesterday afternoon there was me, 3 nurses and the Deputy ward sister all sat playing and it was hilarious. If you’ve never played Dobble it’s a really simple premise but is fast paced and very competitive. I reckon it would be even better after a few sherbets! While we were playing yesterday somehow Uno got brought up and I was amazed that none of the nurses knew how to play. So when Hubby came in today with my clean pjs I got him to bring our Uno cards in so I could teach them. Meal times on the ward are ‘protected times’ meaning that patients should be left alone and not have drs and nurses coming in and out so they can eat in peace so it meant that the nurses had a bit of time on their hands. Out came the Uno cards and after a few practice rounds it all got a bit competitiv...

On Friday I had an Echo scan of my heart. This was to check if the infection I currently have originated from there or has affected my heart. Because a Hickman line sits in the vein that feeds into the heart I think the doctors are being extra cautious and dotting the i’s and crossing the t’s. I have to say it wasn’t a very glamorous experience- it involved me being naked from the waist up and although I was given a hospital gown to wear I had to have it open at the front so it didn’t provide much coverage! As is usually the way, it was a man carrying out the scan but I got the impression that he’d done so many over the years and seen hundreds of pairs of boobs that they were simply an inconvenience in being able to scan the heart effectively!  The scan lasted about 15 minutes and I had to move into various positions so he could check all parts of my heart. I’m assuming I will get the results on Mondays ward round. The worst bit of the whole experience was the fact it happened at 8...