261/365 – Recovery from thymectomy in hospital 

I wrote yesterday about it being a year since my thymectomy and focused on the experience of the operation. Sorry if I scared or upset anyone who is yet to have it – that was my experience and it was a lot  better than I thought it would be. I must say at this point that I think it has made a positive difference as my symptoms are a lot more stable now. I would do it again tomorrow for the chance to be symptom free or have my condition stabilised. 

Today, I want to write about my experiences of recovery – I’m pictured above the night I got out of hospital tucking into a fajita.

I didn’t really wake up on day 2 (Tuesday) as I had barely slept. I was in a lot of pain by then and in the morning I was really struggling to breathe and felt like my lung had collapsed. I was still in intensive care and hitting the morphine, but it didn’t seem to be doing much. Before I was moved from intensive care, I had my first physio session. I still had the drains in at that point – two holes below my breasts that were attached by tube to a container. While it was really uncomfortable, he got me up to walk a little and I tried not to grimace at how fragile I felt. I clutched my rolled up towel to my gaping chest – it would protect me. 

The nurses would come around regularly to take bloods, blood pressure and temperature. I saw members of the surgical team on the first recovery day but can’t remember much of what they said – it was a quick check to see I was alright. I continued to beep and would panic anytime my alarm went off. I never saw my surgeon again. 

In the afternoon, I was moved out of intensive care. Before I could do that they had to remove my drip and the drains. That was quite a painful and freaky experience – I was able to feel two tubes being pulled out from the inside – but it was over in a flash.

I was put in a two person room with a tiny Italian lady, who must have been eighty with tight little grey curls. She hardly spoke a word of English. I’ve never wanted to know how to speak Italian but in those days I would have loved to know the basics. Although it didn’t stop us trying to communicate. Still, I was grateful for the silence in between all the nurse checks, meals, dr visits and medication taking. I didn’t have the concentration to read at that point – or much in the first week at all. I did however start watching Homeland to distract myself from the discomfort – after a few minutes into the first episode I was hooked.

From that point on, I had regular visits from Elaine and my mum and dad separately and they were less fussy about visiting hours. The first visiting hours started at 9.30ish until 12pm and then the evening ones were from 4-8pm. They would help me brush my hair, keep me busy with tales of their adventures around London, my mum would pass on all the family and friend well wishes (which were always lovely to hear) and, in the first few days, Elaine even helped me wash. 

That was my second day of recovery (Wednesday) and probably my worst. I had been given tramadol the night before and it made me feel as sick as a dog. I tossed and turned for the whole night, and when Elaine visited in the morning I had a fever. My gown was damp with sweat, but I still felt too ill to wash myself. She took care of me as I focused on standing up. She also brought the Italian lady in the next bed a cake and I was reminded again how thoughtful and kind she is.

My mum had the genius idea of buying me a neck rest and that was what helped me get my first decent sleep in hospital on my third night. I would thoroughly recommend taking one if, like me, you don’t  normally sleep on your back as after the thymectomy you will be unable to sleep on your side for weeks. I felt like a new woman when I woke after at least six straight hours – I could tell the sleep had pushed me over the worst of it.

My second physio visit was this day, Thursday, and he made me go for a walk with him around the hospital. I wasn’t sure I was ready for it as I struggled to breath going from the toilet back to bed. But we took it slowly and I tried to conceal that I was struggling to breathe as we walked and talked. After that, he dismissed me. I would be ‘grand’, he said. 

I got back into bed exhausted from the effort of a 10 minute walk and couldn’t help worrying about how long it was going to take me to get back to normal. 

My last two days in hospital were really quite peaceful and I would even go as far as to say I was a little disappointed that my break from the routine would end soon. The nurses kept me chatting, my appetite returned with vengeance, my friend Jo came to visit and made me realise how much laughing hurt now. I could hug properly again – despite being tender still – and I took to going for little walks around the hospital occasionally forgetting to do up my gown properly. 

I often remembered not to put weight on my hands just as I was about to – it felt like being stabbed in the chest. I had never fully appreciated how many things I used my chest for. 

The tests continued and I was stable – I was told I would get to go home on Friday morning. The night before my departure I binged on Homeland and then went to sleep to the sound of the woman in the next dorm doing her rosary beads and praying out loud in Italian. Around 1.30am there was screaming in the corridor – feeling protective of my roomate I got up to check. It was a man asking to be let out to go to the shop to get beer – if he is one of my new neighbours I’m glad to be getting out, I thought. 

My dad had gone home by now but my brother arrived just in time for my discharge. I was given a sack of drugs, a list of instructions and a hug by my Italian neighbour. I worried about her for weeks after and meant to go back to visit, but never made it. As my brother carried out my bag full of clothes I hadn’t worn, my mum and Elaine supported me out onto the Marylebone street which I was a little nervous about. Back to the real world meant people buzzing around me and chaos – I hugged my arms tightly around my chest. 

It was over and I was fine. My ptosis was still there so I knew I wasn’t one of those immediately cured types but I hoped for longer term remission. I still do as it can take up to two years. 

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