As I was wheeled in to a ‘normal’ room from the high dependency unit I heard a familiar voice, one that I never imagined I would hear again, and if I’m honest, not one that I particularly wanted to hear again! My first reaction was I must be hallucinating again! But after the initial few minutes of hearing her voice turned into hours, I came to the conclusion that, I unfortunately wasn’t hallucinating it! I’m going to call this person ‘Ms S’, she was a former resident at my place of work, and at that time, she had a very challenging and demanding personality, and this continued to be the case here in Edinburgh! I couldn’t believe my misfortune at having her as a neighbour, all I wanted/needed was peace and quiet to recover, and all I got was a buzzer happy, chronic complainer in the bed next to me!

It turned out to be the ward of small worlds as the woman in the bed opposite me (who I’d never met before) knew my partner, my best friend and was a cousin of my ex mother-in-law!

On the Monday (one-week post-surgery) the physiotherapists who had visited me on Friday returned. At their last visit they had helped me to stand (not very successfully!), today they wanted me to try take a few steps. As they helped me to my feet I was unsteady, but I was determined to take a step. With the physiotherapists either side of me holding my arms, I managed to walk from my bed to the ward door (about fifteen feet) and back!

Also on Monday I was visited by my best friend Jill, we have been friends for 25 years, and despite all the pain and trauma of the last week, I turned into an immature giggling school kid – as is the usual when we are in one another’s company! I think the immaturity and giggles started the moment I told her that she had sat on my ‘pee bag’!  It was great to see her and it really lifted my spirits.

Tuesday proved to be an eventful day! The speech therapist was pleased with the progress of my swallowing, she had been visiting every day trying me with different food and drink consistencies, and although I still had a feeding tube in, she decided I was ready to try puréed food. Now maybe most people would get excited at the thought of a meal after eight days of being fed through a feeding tube, but, some residents at my work are on puréed meals, and trust me when I tell you they are anything but appetizing!  So although it was a milestone, my stomach wasn’t celebrating at the thought!  Here’s a photo of that first meal. This picture was me finished with the dish, I couldn’t force feed myself anymore of it…and that wasn’t because I was having trouble with swallowing, I just couldn’t stomach it!  Another lesson learned for when I return to work to those residents who have to eat this every day!  And in case anyone was wondering what it was, it was corned beef hash!

pureed meal

 

Another milestone from that Tuesday was I had the catheter taken out! (Otherwise known to my friend Jill as a pee bag!) Once the catheter was out I had my first trip to the bathroom where I got to look at myself in the mirror for the first time.  But I couldn’t see myself, my vision was too blurred all I could see was the outline of my face but not any detail, it was a bit unnerving and made me worry that I might be left like that.  I raised my concern with staff and an appointment was made for me at the eye clinic.

 

And the final milestone for that day was I had my stitches taken out!  If you’re squeamish you might want to quickly scroll past the next picture!  But for those who aren’t faint-hearted, I decided to include a photo of my wound just after the stitches had been taken out!

photo 1 [2736]

 

When the consultant and his team did their rounds on the Wednesday they were really pleased with my progress and were talking about the possibility of me going home.  I was so excited at the thought of being back home with my partner Lindsay and our dog Dexter!  I told the speech therapist and physiotherapist the good news. Unfortunately, they didn’t share my enthusiasm, the speech therapist was concerned that I still had the feeding tube in and she had arranged for me to have a videofluoroscopy swallow assessment (a video x-ray of my swallow).  The physiotherapists were also concerned as I was still unable to walk without their assistance and they felt there was still much more to be done before going home could be considered. They said that they wanted to give me the best start at the beginning of my recovery so that I can become the best I can in my long-term recovery.  They went to talk it over with the consultant and, as a result, going home was put on hold.  At the time, I felt absolutely deflated and if I’m honest I was angry at them for over-ruling the consultants decision.  When I look back on it, knowing what I know now about the early days of recovery being crucial, I am grateful for their care and concern and completely respect what they did.

 

Thursday proved to be a busy day! Firstly, I was taken to the physio gym for the first time!  Only to be told all I would be doing would be standing in front of the plinth and stacking plastic cups on top of each other at different distances on the plinth.  I was hoping to go on a treadmill or something to improve my walking! (Again, with hindsight, I now realise the ridiculousness of my expectations!).  So with a slightly petted lip I set about building a plastic cup tower, only to discover that if I bent too far to try to reach the plastic cups (which had been moved out of easy reach) I toppled over.  And that was the point of the exercise, it wasn’t a simple case of practice walking and I’d be okay, my entire ability to balance was off.  Another point to the exercise was to test my coordination, and as I reached for the cups I would miss picking them up, my arm would either over/under-shoot the cup or go to the left or right of it, it took a lot of concentration to coordinate my movements.  At the time I had no understanding of why this would be affecting my walking.  If it was explained to me then I don’t remember, or maybe I didn’t comprehend what I was being told. I now have a better understanding of how, in order to be able to walk, your body continually needs to balance itself and coordinate limb movements.

 

After physio I had the appointment at the eye clinic.  The appointment was in the out-patient clinic on the ground floor, I was taken down in a chair and left, I felt very self-conscious sitting in front of the general public in my pyjamas and fetching white support socks!  The ophthalmologist told me the nerves had been damaged as a result of the pressure of my lying face down for so long during surgery.  The damage was quite severe and I was told it was an unknown whether it would improve, or if it did improve, by how much.  It was a wait and see situation.  In the mean time I was given a black eye patch so as the double vision wouldn’t affect my efforts to walk.

 

In the afternoon I had an appointment at the speech and language department for the video x-ray assessment of my swallow. Just before I went to it, I had been trying to adjust my feeding tube myself as it had been knocked during the eye tests.  I somehow managed to nearly pull it out!  The nurse had to take it out and I begged him to leave it out!  He said he would leave it out until I returned from my appointment, but because I wasn’t managing to eat the puréed food he would need to insert it again.  I explained to the speech therapist what had happened and she said that I was able to leave it out on the condition that I ate and drank enough and she would monitor my food chart.

 

During the assessment I was asked to drink barium liquid, I’m a fussy eater so it takes me some time to pick up the courage to taste anything new, so I asked if I could dip my finger in it first, as I couldn’t just take a sip without knowing what it tasted like!  To my relief it tasted nice!  I know I would still have had to drink it even if it tasted awful but it was the unknown of what it was going to taste like that I hated!  As I drank it, x-rays were taken of my swallow to get a better understanding of my swallow process.

 

The following day the speech therapist had a surprise for me! Instead of having to eat custard she wanted me to try something new…a custard cream biscuit! Proper food!  At first I coughed on the crumbs so spat it out but I tried again with more success!  I wasn’t quite ready to eat a packet of biscuits but it gave an indication of where I was at with regards consistency.  She decided I was able to try a diet of soft foods instead of puréed food!  She also had the results of my video x-ray. The results showed that I had weakness in my mouth and throat and a delay in my swallow (the weakness in my mouth made it hard to hold on to food and drink in my mouth and made it harder to chew food).   But the encouraging news was that over the last ten days I had already made huge progress with my swallow.   Hours after waking from surgery I was unable to hold a mouthful of water in my mouth and I choked as it went down the back of my throat as I had no swallow, so to come from that to being able to eat soft food and slightly thickened fluids in ten days was huge progress.

 

Later that morning I was taken to the physio gym.  I was trying to walk a figure of eight around cones, if the physiotherapists hadn’t been standing next to me I would have fallen.  It brought it home to me why I wasn’t ready to be sent home.  I had made progress in walking – as long as it was in straight lines!  We practiced walking and turning with crutches but I couldn’t coordinate taking steps and moving my arms with the crutches, so I was given a different walking aid.  Ladies and gentlemen let me introduce you to Mavis (so named by my work colleague Sharon!)

photo 2 [2738]

Mavis turned out to be an absolute blessing, we became inseparable!  She brought me a bit of independence, with the help of Mavis I was able to get up and sit in the chair next to my bed, I could walk to the bathroom instead of being taking in a wheelchair (although I still needed to buzz for assistance as I wasn’t allowed to go on my own).  On the Saturday Lindsay and her mum, Lesley, took me a wee walk around the hospital with the help of Mavis!  I was exhausted when I got back to the ward but happy with my little jaunt!

For the last two weeks I had needed assistance of some form to wash myself, it was a bed bath the first few days and then full assistance in the bath and shower. But on the Sunday the carer asked me if I wanted to try to shower myself and she would stand by in case I needed help, what an amazing feeling it was!  But even though I was sat down in the shower I began to tire so she needed to step in to help rinse me, but I was grateful that she let me try even though she would have known it would be more time-consuming, I felt she was helping to promote my independence.

On the Monday (two weeks after surgery) the consultant again spoke of returning to Dumfries, but this time they didn’t talk about going home they suggested a transfer to my local hospital.  I wasn’t too disappointed at not getting sent straight home, after I nearly fell in the gym and after a choking episode a few days ago, I decided I would rather wait a bit longer before going home because I didn’t want to put any worry or onus on Lindsay with regards falls or choking.  Instead I set my sights on a transfer and was happy that I would be a step closer to home and it would mean Lindsay didn’t have the daily five-hour round drive to visit me, instead it would be a ten-minute drive across town!

On the Tuesday and Wednesday my transfer fell through, I admit to shedding a little tear on the Wednesday but then I made myself look at the bigger picture, I had been there seventeen days a few more wouldn’t hurt!  By the end of the day I was told that the transfer was back on for Thursday, I was so excited I couldn’t sleep and I got myself up at six to pack my bags!  At 8.30am my transport arrived and I was saying my goodbyes I got tearful, the staff had been outstanding.  At my most vulnerable they had cared for me with respect, dignity and genuine care and I was so grateful for it all.

As I was ready to be wheeled out of the room the transport support worker asked me if the rollator (Mavis!) was coming with me and I said no it belonged to the hospital. At that point the ward sister stepped in and told me to take it and she wouldn’t tell if I didn’t!  I was so grateful as I had been worrying there wouldn’t be one available in Dumfries.  When we got to the lift at the end of the ward, the nurse who had taken care of me in the high dependency unit came running down the corridor shouting “wait”!  She gave me the biggest hug and told the transport staff to take care of me as I had been her star patient! Needless to say I started crying again!  And so it was with a thankful and somewhat heavy heart I said goodbye to ward 33, but I was looking forward to the next chapter in my recovery.

 

 

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10 thoughts on “Small World, Big Milestones and Goodbye Edinburgh! (part 7 of I’m a 40-year-old blogger virgin…!)

    1. Thank you Sonia, it’s been a surreal 15 months. I’m still having issues with my balance and fatigue but each day I am going from strength to strength! My motto is keep smiling and work hard each day to become the best Elaine I can be post-surgery. xx

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      1. You keep up the good work. Being positive really helps. It helped me after my operation last November to remove a brain tumour. I’m now back driving and back to work this week after being off for 10months. You’ll get there all takes time.

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      2. That’s fantastic to hear your improvement Christine! I’m waiting for an appointment to be assessed for returning to driving, so fingers crossed!

        Do you mind me asking how you have got on being back to work this week?

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      3. Only working 4hrs Monday Wednesday and Friday, I was exhausted after my shift on Monday and having to drive from Dumfries to annan didn’t help either came home and went straight to bed. Hope I feel a bit better tomorrow when I finish at 1o’clock

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  1. I have been diagnosed with an arachnoid cyst on october 30th and have been so worried about beginning the process to have my surgery arranged… Your story is inspiring… And has helped me alot… I also have some worries though because of my emotions towards having someone care for me until i can do so myself as i am a caretaker myself… Any words of advice… I am 29 year old single mother of five!

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    1. Hi Britney, I understand what you’re saying with regards being cared for. I was a care assistant and my trepidation was losing the ability to care for myself. But when the time arrived for me my feelings were not so important in the bigger picture. I was cared for with the utmost dignity and respect, which helped so much. I still felt embarrassed and emotional at the loss of my independence, but it really was small in comparison to what I’d came through.

      Do you have close family and friends to help with your children? I don’t have children so that was one less thing to worry about for me.

      Feel free to email me at anytime, my email is: evsmith@hotmail.co.uk

      Any questions or just need a chat, just message.

      Take care, Elaine

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