Disconnected

Six moths ago (well almost) , it was 18th August 2020. I had life changing surgery. Lockdown the first was quite easy for me because I wasn’t going out anyway. At the start of 2020 I was waiting to have surgery in early March. By mid February I was on my 4th lot of antibiotics since the start of the year. I put myself into a self imposed isolation. I didn’t want to catch a cold or anything else that would put off my surgery.

Well that plan didn’t work. When I had my pre-op it was discovered that my iron levels were far too low for me to have my procedure. My surgeon said it was all the kidney infections that had caused my iron levels to be so low. No wonder I was getting so tired all the time. I thought taking iron tablets would help but that wasn’t the case. It was arranged that a week prior to my new surgery date (3rd April) I would have an Iron Infusion. Similar to a blood transfusion.

However on the day of the infusion I went to the hospital. Very weird, security on the door stopping everyone who wasn’t there for treatment from entering. I had already discovered that the car park I usually use was out of bounds. Hospital staff only. This was the impact of the first lockdown showing itself. Corridors were very quiet. None of the normal activity. Eventually after being sent to the wrong place I found my way to Day Surgery Unit. Here I was prepped for my treatment, all the usual questions, blood sugar test, weight, height etc. The nurse went to collect the prescription. A few minutes later returning with my surgeon’s assistant.

It took a very short while to let the news sink in. My surgery was cancelled. Covid-19 had put the kybosh on that. With tears in my eyes I drove back home. No infusion for me on that day. The rest of lockdown I was still fairly weak. I stayed home and stayed safe. I knitted, I read. I took care of my mum.

Lockdown finally came to an end, my health was slightly better, I guess because I had been staying home not rushing around everywhere. I waited for the call. I was so worried that I wouldn’t get that call not in July or August or September, perhaps not before Christmas or even in 2020 at all. Why would they call me when there were all these people with cancer who needed surgery. Surely they would get priority over little old me. I don’t have cancer right now although my problems stem from the cancer treatment I had back in 2001.

My Dr disagreed, she said that my surgery was urgent, she would remind the hospital to get me in asap. True to her word, at the end of July I was told to go in at 7am 18th August. I put it down to the shock, but now realise it wasn’t that. I became very ill within days of receiving my appointment date. I could barely walk, or eat. My strength was virtually nil. I did hope that I would recover before my allotted date. No such luck! A few days before my surgery I was asked to go in at the earlier time of 6.30. We weren’t sure what traffic would be like or how long it would take me to lug my bag from the entrance to where I needed to be. (obviously the furthest part of the hospital from the main entrance). I couldn’t take anyone with me to carry my bag so I soldiered along, stopping at various seats to rest. I still reached my destination far too early. 5.45am! I don’t usually know that time exists.

Anyway. I had my surgery. At first I was horrified that my life was now changed for ever. No going back, it was so awful that I didn’t think I would ever learn to cope. I was in theatre for 6 hours and in hospital for a week. In normal circumstances I would have spent that week chatting to the other patients who came and went during my stay. Unlike me, I didn’t speak to any of them. I just didn’t want to. I was probably feeling very sorry for myself.

I came home and was still in a lot of pain as well as weak and not eating. It took several weeks before I could start to get my appetite back. Gradually my strength increased. I started sitting up instead of laying on my back most of the time. I had nobody looking after me. I was and still am carer for my mum. Lockdown may have finished but we still couldn’t have people in the house. Only our cleaner every 2 weeks fully masked up. My ex who was our support bubble is the only other person who visits.

My nurse would normally visit every day to make sure I was fine with my new reality and was able to cope with everything. She could only phone me to see how I was doing. Now almost six months later I have got used to all that my new life entails. The problems I had in the early days are now a distant memory (most of the time). I am getting used to the reordering system for my supplies.

Now I guess I should put you out of your confusion and tell you that at my tender age of under 60 I am now a bag lady. My bladder wasn’t working, it had not only shrunk but had holes in it. I wear a bag on my stomach (stoma) which I have to empty regularly throughout the day. I have a night bag which I attach to it with with a longish tube for night times. I have a strap which keeps the tube against my leg whilst I sleep. Not very often but occasionally like 4.45am today I wake to discover my bed is wet because I have become disconnected. The tube was still strapped to my leg but was no longer attached to my bag on my stomach.

It is times like this that I am glad I am single and don’t have a partner to disturb in the middle of the night, sorting out the bedding.

All things said and done although this is now my reality and it isn’t something I had ever thought would happen to me. I feel so much better now, than I had for a number of years. I still get extremely tired. I try not to do too much but I’m gradually getting stronger.

Life will never go back to normal for me but then I doubt it truly will for anyone now. I am leaning how to live my new normal.