When I was told that I could start drinking, I was terrified. I’d lived with a hole in my Oesophagus for so long, all I could envisage was liquid flowing out of me like water running from a rose on a watering can! But I was blessed with a fantastic Consultant and medical team – each day they took the time to explain things, reassuring me that any liquid not flowing through my oesophagus into my stomach would go straight into my abdominal drains. So the very worst that could happen was my stoma bags would fill. Essentially, that was what everyone was looking for – empty bags were good, full bags…..not so good!
I’d had a good weekend – visits to the hospital café, ice chips on a Saturday night that I could now swallow! I had a real treat on Sunday morning. The HCA’s on the ward were lovely and on this particular day one of them offered me a foot bath. I’d never had a footbath in my life but who would turn down a pamper in hospital! The lady brought a lovely bowl of warm water and she’d even found some bubble bath. I sat in my chair, sipping tea feeling like the queen! It was such an incredibly kind thing for her to do, probably quite insignificant to her but to me it meant the world. She’d been able to take the time to do what she wanted to do – care for her patients. Sunday’s were always the best times on the ward.
I was feeling so much stronger now. The physios had provided me with an exercise bike and hand weights. The other patients must have found it very odd, seeing me cycling and weight lifting! I’d point the bike towards Dartmoor and it was quite pleasant. I was able to manage a few kilometres each day and even had to be told off for overdoing the exercise. At the weekend, it was quite normal for me to roam round the hospital corridors, bumping into familiar faces!
Monday 7thJanuary arrived and my weekly swallow test. The Christmas and New year break were well and truly over. The hospital was extremely busy, on it’s highest alert, with no beds available. As a result my test looked doubtful but once again, I was collected and whisked down through the hospital corridors back into the real world. It was busy! Visitors, patients, staff all walking around like little tiny ants. I arrived in the x ray department with spring in my step hopeful of good news. Surely the cotton thread hole had healed! It wasn’t my usual radiology team and in the room there was an air of seriousness. As I took mouthfuls of disgusting chalky fruity liquids, eyes were scanning the video frames of my swallow. There was very little chatter and when the test was over, there was no conversation except ‘Thank you, I’ll pass my report to your consultant’. Now, this was very unusual! In the past I’d always get a little progress report but today there was nothing. Had he seen something or had he not seen anything?!!
I arrived on the ward to lots of staff eagerly awaiting the news but I had nothing to give. As it was late in the day I didn’t expect to have a visit from my consultant but I couldn’t help but think that it was a good sign. It had to be. The nurses were full of optimism, certain the hole had closed! Around tea time one of my medical team popped in to see me. He told me that he’d had a quick look at the scan and he thought that the hole was still there but we needed to wait for the radiologist to speak with my consultant. Bugger!!!! When the night shift came on and did their rounds, they all asked what the results were and confusion set in, because they’d heard that the hole had closed but I’d been told it hadn’t! So the night was long and everyone was convinced that it was good news. With little coming into my drains, where else could it be going?
The next morning I was up early but my team didn’t visit me as they normally did. Alarm bells began ringing! But then my consultant appeared, looking as cool and calm as always. Unusually he sat on the side of my bed and talked to me as though we were friends. I knew something was up! He explained in detail about the report from my swallow test and then he said this: “I’m 90% sure the hole has closed”! I grabbed his leg and burst into tears!! But he remained calm and told me not to get too excited. He said we needed to be sure and the only way to do that was to start eating. Suddenly, excitement was replaced with shear terror. Eating would mean passing something through a very fragile, delicate part of my body that had already been through so much trauma and now I had to push something through it to see what would happen. He suggested ice cream, told me to take it slowly and said he would return later that day.
As he left a nurse came in. She was elated and screamed so loudly that the whole ward had guessed the good news! She brought some ice cream but could see that I was terrified. She sat with me as I cautiously took my first mouthful but there was a problem. I’d forgotten how to eat. How ridiculous! I struggled to get anything to my mouth and once the ice cream was in, I couldn’t swallow. The excitement of being able to eat was replaced with tears and once again I felt pathetic and useless. A little later I received a visit from a Speech and Language therapist and an Occupational therapist. They spent time with me, talking and assessing me all the time. I was asked to take a sip of water and aside from being a little shaky, I managed to do it. My swallowing was watched carefully and looked to be fine. So it appeared to be a psychological issue rather than a mechanical issue. The OT took my hand and told me that I could do it, to take my time and to swallow when I was ready. She said they would sit with me whilst I ate but was keen for me to try. So I picked up a spoon and the now nearly melted ice cream and I took my first mouthful. The ice cream was creamy and sweet, much sweeter than I remember ice cream being. I swallowed…….. and down it went. I felt it travelling down my Oesophagus, all the way, until it vanished……in to my stomach! 2 more mouthfuls and I was full to bursting but it was a monumental point in my recovery. After nearly 3 mths, I had swallowed my first solid food.
My consultant had told me previously that when the hole finally healed, things would happen really quickly – I’d be taught how to eat and drink again, be monitored on solids and I’d be home. I didn’t believe him. How could I spend so much time in hospital yet be home so quickly once the hole had healed? But he wasn’t wrong!! Everything happened really quickly! Within 2 days I was off the TPN and eating pureed foods, drinking tea, even hot chocolate! My body couldn’t handle anything of substance and it showed its objections by making my bowels work over time. My Nutrition nurse said it was perfectly normal and it was a good sign. She had been brilliant throughout my time in hospital – altering my TPN to what I needed, standing up for me when doctors wanted to change things – she was a true patient advocate and a lovely lady.
As the days went by, I slowly became more normal. My observations were good, my drains were removed one by one after careful monitoring and the day finally came when my last drain was removed. I left the treatment room with nothing but the PICC line in my arm and it felt strange. I took myself off to Marks and Spencer to treat myself to some nice tea bags and peppermint tea to settle my stomach, with no drains or tubes in sight. The pureed food was actually quite nice, weirdly moulded into shapes of what it actually was. A few mouthfuls and I was painfully full but I felt that I should eat more than I could. One evening I’d eaten so much, I was in terrible pain and I began to worry. After a visit from the on call doctor who diagnosed simple over eating, I was only given half portions, under strict instructions from my medical team! On Friday 11thJanuary, one of the consultant team told me that I should try and eat something with lumps in. This again would be another psychological battle but one that I over came and won. I was going into what would be my last weekend in hospital, unaware that on Monday 14thJanuary I would be discharged…..
Gallery of My Food – Yummy!