Mothering Sunday

I had been looking forward to Mothers Day, not for the usual lie in or breakfast in bed but because it was the one day of the week that I got to see Hubby and the kids.

Hubby had told me that they would be coming early, around 10am but then on Sunday morning I got a message from Big Fella saying that Hubby had forgotten to put the clocks forward so they would aim to get to the hospital for 11am instead.

Fancying some toast, me, Sue and Sarah (from side room 6) went down to the restaurant and met my friend who is on Fredrick Salmon ward. We had a little browse through the M&S mans wares and then did our walk.

As we were going round we got to our bench and couldn't believe it when we found that it had been replaced with a new one!

It was such a monumentous occasion that we decided to take a selfie of the 3 of us on the new bench.

Nearing the end of the walk Hubby text to say they had arrived so I made my way back up to the ward. Sitting on my bed were Big Girl and Big Fella and Hubby. Seeing them all I rushed in to have kisses and cuddles.

I was very lucky to get cards both shop bought and home made and some lovely gifts that the children proudly told me that they had chosen themselves. I suggested to Hubby that we went out for a few hours but he thought that we were going to stay on the ward. I was desperate to get out of the hospital though and persuaded him to make a trip to Ruislip lido.

I don't think he really wanted to go because he looked exhausted but he begrudgingly agreed so we set off (after I put some clothes on of course. I didn't go out in my pjs!)

Another patient had told me about Ruislip lido and it was lovely. It's a lake with a man made beach, park for the kids, a miniature train running around the perimeter of the lake and a cafe. It even had free car parking!

The kids were excited to go on the train so we did that first. It took about 15 minutes to get to the beach where we let the kids have a play then took the return journey back. While the kids were playing Hubby admitted that he was worn out and that the kids had been particularly difficult the night before. Big Girl especially has been quite challenging but I think she finds it very hard when I'm in hospital, more than Big Fella does. If you think about it I've spent 7 of the last 9 months in hospital on and off so it has affected the kids and the family as a whole quite considerably.

Hubby had packed a picnic so we sat and had that before feeding the ducks, riding scooters and getting ice creams. After a couple of hours I was completely exhausted so told Hubby that I needed to head back to the hospital. Before going back I decided that they needed to have a bit of a car cleaning session as it had turned into a bit of a mess over the last few weeks. After Hubby and the kids had filled 3 carrier bags of rubbish we set off.

On the way back I got a text from Sue to say that she had been discharged and was on the way home. She wasn't supposed to go until tomorrow so I couldn't believe that she had managed to get discharged at the weekend. I was gutted that I hadn't been able to say goodbye and felt that the ward wouldn't be the same without her.

We arrived back just in time to go to mass and the kids decided that they wanted to sit on the front row. We were close enough to touch the priest as he talked but Father Augustin is lovely and doesn't bat an eyelid if the kids get a bit restless and even waited to start the mass while me and the kids lit candles.

It was then time for them to go home and I was so sad. Big Girl asked when I would be coming home and although I was feeling better I still didn't know. I told her that I had to see Dr7 in the morning and see what he had to say. Hopefully it would be at some point in the next week fingers crossed.

I hate saying goodbye and usually walk to the lifts with them but after being out for the afternoon I was too worn out so had kisses and cuddles by the bed. The kids ran off to press the button for the lift while I said goodbye to Hubby.

I feel guilty knowing that he is struggling at home with the kids and working and keeping everything going at home and also helpless because I'm stuck in hospital unable to do anything to help him. I just desperately want to go home and for us to be a normal family again without the threat of another hospital admission hanging over us.

NB x

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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