More than just a bag lady

The plan was for me to be discharged either Sunday or Monday and I was so excited to get home especially as Big Fella has his birthday this week. But on Saturday night every time I turned over in bed I ended up waking up with pain in my chest around my Hickman line. I thought maybe I had caught it or pulled it in my sleep and didn’t think too much of it until on Sunday I started to feel pretty poorly.  Early afternoon I had to buzz for the nurse because I was coughing and coughing and couldn’t get my breath. It felt like there was a weight on my chest. The doctor came and ordered a Covid test and an ECG (both of which were thankfully ok). Usually Hubby and the kids come to the hospital on a Sunday to bring me clean pjs and we have an hour in the hospital restaurant together but I told them not to bother coming as I was still hoping to be going home the following day. I also thought that if I had a day resting I would start to feel a bit better but as the day went on I felt worse and wo

The highlight of my day, possibly my week, was leaving the hospital this morning for an appointment at the Treatment Centre, all of a few hundred metres away! I was diagnosed with endometriosis last year after a scan on my bowels picked up an ovarian cyst. For those who don’t know what endometriosis is it’s where tissue similar to the lining of the womb grows in places it shouldn’t. https://www.nhs.uk/conditions/endometriosis/ I didn’t realise I had it because any pain below the waist I always attribute to my bowel problems. The gynaecology consultant said that they would normally carry out a laparoscopy (keyhole surgery) to formally diagnose and see the extent of the endometriosis but because of all my previous bowel surgeries this wasn’t an option. So the decision was made to give me Decaceptyl injections to put me into an early menopause. Doing this stops the womb lining from growing and from contracting when you have a period and therefore helps to reduce the pain. I have the injec

This mornings ward round has left me devastated. I’ve been told that all elective colorectal surgery has been stopped while the hospital catches up on urgent cancer and other life threatening surgeries. Don’t get me wrong, I know that these surgeries need to take priority as it is literally life or death for the patients involved, but that doesn’t stop me from feeling gutted. The question is now whether I stay in hospital indefinitely until I get the surgery or whether I go home knowing that I will probably bounce back in within days or weeks.  The gastro dr is worried that if I go home they might not have a bed on the ward when I need to come back in. This would mean I would end up on a ward that doesn’t look after patients with Hickman lines or TPN and I would probably have to come in through A&E instead of coming in straight onto F22. As much as I want to get home to Hubby and the kids I am also a bit scared. When I was brought in a few weeks ago I was so terribly unwell and the

 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

 I’ve not blogged since March because I’ve been in hospital and not been up to it. I came into hospital mid March for a planned admission to reduce or come off completely my opiate medications. I had seen one of the gastro consultants in clinic who suggested that the high doses of fentanyl, codeine and morphine could be slowing my bowel down significantly and be either causing or contributing to the bowel obstructions and problems I had been having over the last 6-12 months. I knew that it wouldn’t be easy to come off them but I was willing to give it a go.  Within the first week I had stopped taking codeine and reduced my fentanyl patch from 100mg to 75mg. The plan was to reduce it in 12.5mg steps every 3 days when the patch needed changing (as the doses the patch comes in are 12.5mg increments). I found the first 2 weeks pretty easy, had no withdrawal symptoms and thought that I would continue to sail through. How wrong I was! Once I dropped below 50mg I started to really feel it. I

At the weekend I celebrated my 12th wedding anniversary. We can add this to the list of birthdays and other special occasions celebrated with me as an inpatient in hospital. As much as I remember my wedding day being one of the best days of my life it also brings back extremely painful memories. The year I got married was also the year that my health took a serious turn for the worst and only weeks before my wedding I was lying in intensive care. Most people would probably have postponed the wedding but we were getting married on the 10 year anniversary of us being together so I was determined that the wedding would go ahead. I remember friends and family coming into hospital with my wedding planning folder and we would hold meetings around the bed with me dishing jobs out to everyone. I had ordered my wedding and bridesmaid dresses in Nottingham and one friend even drove down from Nottingham to collect Big Girl, drive her up to Nottingham for her bridesmaid dress fitting and then brin

 Last week Hubby was granted special permission to enter the inner sanctum of the ward so he could attend a meeting with the surgeon. To make things easier and instead of referring to him as ‘the surgeon’, let’s call him Mr E. Incidentally, do you know why surgeons are called ‘Mr’ instead of ‘Dr’? It’s cause in years gone by they were awarded a diploma instead of a degree and the university educated doctors didn’t want the title of Dr to be bestowed upon them. In modern times surgeons can choose which title they prefer to use. But I digress... I had already met with Mr E the week before and had an opportunity to ask some questions but since that first meeting I had thought of more. And of course Hubby had questions of his own. Mr E spent more than 30 minutes on each occasion patiently explaining what he planned to do, the risks and the pros and cons.  To begin with no colorectal surgeon in the hospital was willing to take on my case. My gastro consultant has tried literally everything