On the Bank Holiday Monday the kids both had plans so we went to Alvaston Castle Country Park with some friends and both our dogs. It felt very strange to be out without the kids but I’m guessing that this is going to happen more and more now the kids are getting older and wanting to spend their free time with their mates.
When we got home though I was absolutely knackered and had to go to bed for the rest of the day. On the Tuesday morning I woke up and felt ok so decided I would run some errands including taking 15 parcels to the post office. I’ve been selling all the clothes that no longer fit me and the kids on eBay so every few days I end up going to the post office with a pile of parcels. I had planned to pop to the shops but when I got back into the car I had to drive home because I suddenly felt all funny.
By the time I reached home I had to get Hubby to help me up to bed as my legs felt like jelly. I started feeling hot and cold, was shivering and my body ached all over. I did wonder if maybe I had Covid again or was coming down with a bad cold or flu. But after a couple of hours of sleeping I woke up feeling even worse and very, very nauseous. And then the vomiting started. And didn’t stop.
By this point Hubby was worried, quickly grabbed a few essentials and bundled me into the car. On the drive to A&E I deteriorated further and was still vomiting. When we arrived he had to go and get some help as I was unable to get out of the car. Luckily a nurse came to help him and after being booked in I was wheeled straight round to be assessed. It was here while I was lying on a trolley in a corridor vomiting into a plastic bowl that I saw one of the student nurses that I knew. She had done a placement on F22 and does overtime shifts as a healthcare assistant while she finishes her degree. She’s already been offered a job on the ward so once she graduates she’ll be working there full time. She’s lovely and she came straight over to see how I was. While I was chucking up she tied my hair up into a messy bun to stop it from dangling in the sick. This small act of kindness meant so much to me and made me cry.
At this point Hubby was kicked out of A&E as patients are still not allowed to have friends or family members in the department with them. I absolutely hate being left alone when I’m so unwell. I understand the need to protect vulnerable patients but I do think some discretion should be exercised. Hubby had to take me to the toilet before he left; I could barely walk and he had to help me wipe myself as I was so, so poorly. If he hadn’t been there then I don’t know what I would have done as the staff that were working were way too busy to take me to the loo so I would probably have ended up having an accident. I was still vomiting, had been given no pain relief or antisickness and had Hubby been there he would have been able to advocate for me.
So instead it was over 4 hours before I was finally seen by a doctor and because they had difficulty in cannulating me it meant there was a further delay in me getting any meds. The support assistant that first tried to cannulate me came with a green cannula. The different colours denote the size and you can see from the photo below that green is one of the biggest.
I know my body and I know my veins are knackered. They’re tiny, they’re not straight and they’re scarred from repeated cannulations and blood tests. So I know that there is NO WAY a green cannula will go in. Usually I have to have a blue and sometimes even a yellow paediatric one. But this support assistant thought he knew best, grabbed my arm and told me that he ‘would get a green one in’. I told him again that I had bad veins and that an anaesthetic consultant couldn’t get a green cannula in me and that I needed a smaller cannula. But he refused to let go of my arm and said again that he would get a green one in me and that I needed to calm down. So at this point I pulled my arm away and said very loudly “I do not consent”. He looked really angry so I tried to explain that I was happy to be cannulated with a smaller cannula but that I did not consent to being cannulated with a green. He told me that I was being dramatic and that I was silly and that he now wouldn’t cannulate me at all.
So I was left for another hour before someone else came to try and after trying twice with a pink cannula they then had two more attempts with a blue before finally getting one in. Finally I was able to get some morphine and antisickness after being in A&E for more than 6 hours. Now I was moved from the ‘Majors’ area and put into another area of A&E for patients waiting for a bed on a ward.
Most patients go from A&E to a medical admissions ward while they’re assessed. From there they are either moved to a specialist ward or discharged home. But because I have a Hickman line and am reliant on TPN feeds I have to be looked after by F22, the gastro nutrition ward. So the bed manager was trying to get me up onto F22 but the ward was full. So I ended up spending a total of 22 hours in A&E before I was moved up to the ward.
Luckily the vomiting stopped in the early hours of Wednesday morning after almost 12 hours of non stop puking. I really don’t know where it all came from as I had eaten nothing at all on Tuesday and barely anything the day before. I hadn’t slept a wink in A&E so I was exhausted when I got up to the ward. I was so grateful to climb into a proper bed, with a pillow, in my own room with my own bathroom. I know, I know, I’m completely spoilt! It’s like being in a private ward on F22 as out of the 19 beds, 15 of them are in private rooms. And then the other 4 beds are 2 double rooms. But I have to say I feel properly put out if I go up to the ward and have to share! It’s not so much sharing a bedroom that bothers me, it’s sharing a toilet/bathroom that I really don’t like. Especially when I need to have toilet wet wipes, barrier cream and tena pads to hand for every visit.
After all the vomiting stopped then everything below the waist ground to a halt. My bowels stopped working and I even stopped weeing for almost 24 hours. They did a bladder scan to see if I had any urine in my bladder. If there was a lot just sitting in the bladder then they would need to catheterise me to drain it off. Turns out there was hardly anything so the doctor decided I was probably dehydrated after vomiting so much so prescribed me some extra bags of saline fluid.
It took my bowel the best part of a week to wake up and when it did wake up it had a crazy 12 hours. But for the last few days it’s been a bit stop-start. I’ve been in huge amounts of pain so I’ve been having morphine injections. Because I’m still very nauseous and my insides hurt so much all of my medication is being given IV (IV means intravenously which is into a vein via a cannula).
Dr B isn’t on the ward this month- he does one month on and one month off- so I’ve been seen by the new gastro consultant and I can’t remember his name. Dr P, the other new consultant I’m under hasn’t been around either so we are no further forward on starting the biological treatment. They did discuss me at the MDT (Multi Disciplinary Team) meeting on Tuesday. At these meeting the surgeons, radiologists, gastro consultants and other specialists get together to discuss cases. They decided to restart me on the antibiotics I had been on a few weeks ago aimed at treating SIBO (Small Intestinal Bacterial Overgrowth) and I’m going to be on these long term, probably for a few months at least. They also decided to do a CT scan. They try to hold off scanning me as I’ve had lots of scans and X-rays over the last couple of years and they’re concerned about the amount of radiation I’ve been exposed to. Initially they were thinking of just doing an X-ray but then decided they would rather get the detail of a CT scan for the little bit of extra radiation.
So I had the CT scan on Wednesday which showed that there is inflammation in my J-pouch and the bowel surrounding it. In order for them to understand how bad it is they said I would need a sigmoidoscopy aka the camera up the bum. I was told I would be having this yesterday so went through all the paperwork that has to be filled out prior to a procedure and then had a lovely enema to make my bowel nice and squeaky clean.
If you’ve not had the pleasure of an enema before then you’ve not lived! You have to insert the tip of the bottle into your bottom, squeeze the liquid out of the bottle and then lie back and wait for the floodgates to open. Usually within minutes I’m running to the loo but this time even after an hour hardly anything came out. Which is very strange. Maybe there just wasn’t much to come out given the most I’ve eaten in 10 days is a cup-a-soup and a few bits of fudge. Or maybe my bowel is being really, really naughty.
But it will remain one of life’s mysteries as 2 hours after my enema the nurse said they’d had a phone call from endoscopy (the department that deals with all the up the bum and down the throat cameras) to say that they couldn’t fit me in. Now I have to wait until Monday as they don’t do them over the weekend.
I’m feeling a bit emotional today, not helped by the fact I watched DIY SOS this morning which always makes me cry! Big Fella has his last football match of the season and obviously I’m not there to watch it. And then this afternoon all of Hubby’s family will be going round to our house to have a BBQ and watch the Forest match. I love spending time with my nieces, nephews and extended family and hate that I’m missing out. I think this admission (and the one just before it) is made even harder because I’ve had 4 wonderful months at home. I feel like I’ve had a taste of ‘normal’ life and now I’ve come back down to earth with a huge bump. It’s like my illness has said “you’ve had your fun, now back to hospital”. It has to remind me that it’s still there and it’s the one that dictates what I can and can’t do in life. I hate the unpredictability of it and not being able to plan anything. I’ve got tickets to see Sandi Toksvig at the theatre next week and I really don’t know if I will be able to go. If I’m feeling ok then the ward sister might let me go out for a few hours but if I’m not having a good day then those tickets will be wasted.
I have no idea how much longer I will be in hospital but I’m hoping to beat my parents home. They’ve just flown off to Mexico for 3 weeks and I do miss them when they’re away. Don’t get me wrong, they’ve worked hard all their life and they deserve to enjoy their retirement but they do a lot for me, Hubby and the kids. So when they’re away we really notice. There’s nobody to do the ironing as that’s usually mums job, although Hubby doesn’t see the creases and just sticks the clothes in the wardrobe anyway! And Dad helps to taxi the kids about to their clubs or when they go to meet friends. This means that Hubby will be even more stressed than normal trying to juggle everything and keep his head above water.
For me this is the hardest part of having a chronic illness: seeing the effect it has on everyone around you. I know I can’t help being ill but I still feel guilty for the fact it makes our lives ten times harder. But then I’ve watched Deborah James (Bowelbabe) on tv and realised that I’m lucky to still be alive and be around to watch my kids grow up. Cause I reckon given the choice she’d take my life over hers right now. I think what she’s done to remove the stigma of bowel cancer has also helped people to have discussions about bowel disease too. Too often people are embarrassed to talk about bowels and poo and all the symptoms you get with these diseases but you shouldn’t be. If you have any changes to your bowel habit or if you’re ever in doubt if what you’re experiencing is ‘normal’ then please see your GP. If it’s cancer then early diagnosis saves lives; if it’s bowel disease then you can get started on treatment and if you’re lucky it won’t be anything to worry about. But better to be safe than sorry.
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