Operation day

I apologise for the delay in writing this. The morphine fairies wouldn’t let me function !

After a restless night with very little sleep, the alarms around the house broke the silence at 0445 and we all dragged ourselves out of bed and into the car for the 66 mile journey to Oxford, watching the darkness slowly turn day as the morning moved on. I drove the journey there as it is to be my last driving for sometime. We arrived with 20 minutes to spare before admission time and even if I could have had a coffee, nowhere was open anyway.

It wasn’t too long before I was shown to a bed, where we were pretty much greeted straight away by the anaesthetist. We discussed the General anaesthetic but he also mentioned about creating a nerve block below knee while I was asleep, to provide adequate pain relief when I wake up.

I was then measured and fitted for my sexy new stocking, right before my consultant arrived to discuss the plan of action of the day ahead. Everything was moving ahead so quickly, like some kind of speed train, minus the breaks!

Having enquired several times about where I was on The theatre list, I was still unable to ascertain what time I would be going down as the theatre list was forever changing.

I was assured it wouldn’t be much before 1pm, so with this in mind I sent out Wayne and the girls for coffees and breakfast, giving me the perfect excuse to shut my eyes and catch up on the sleep I had missed out on the night before.

I was woken by the return of my family, just before after 11am followed shortly by the theatre Porter that has come to take me to theatre. Except I wasn’t ready. I wasn’t in my gown or anything. Theatres had changed the list, meaning was going earlier than planned. I didn’t mind this so much because it meant that I had less time to worry about things.

11:58 …. the last time I saw on the clock in front of me in the anaesthetic room before being put to sleep. I had said my goodbyes to my family at the doors and I was working out how long it would be before I saw them again, then it all went blank!!

My next recollection was being woken up in an unfamiliar room, bleeping sounds echoing around me and a nurse trying to rouse me. Disorientated and confused I managed to look down and see the evidence of what had been done to me as I was greeted with a purple cast. I wasn’t in any pain, and I certainly didn’t feel groggy. All I wanted to do was sleep.

I don’t remember too much about seeing my family after my operation. So don’t think they stayed all that long, as I think I was very sleepy.

I do remember the ward was awfully noisy. Lots going on around me. A young girl was in tremendous pain since returning from theatre and resulted in several medical emergencies and her subsequent admission to HDU.

Despite the traumatic surgery my foot had just undergone I was in very little pain. I remember lay there thinking I had it easy. But I was warned by one of the doctors that I would feel it once the block wore off. Even though I was pain free I still found it exceptionally difficult to get to sleep, so I stayed awake … chatting for my neighbour in the opposite bed.

One thing I hadn’t considered in all of this…. how on Earth was I going to get to the bathroom when I needed to go? The fullness of my bladder was screaming at me for relief. I called the nurse, and she presents me with a bed pan!!! I’m 38 years old and feeling the indignity of having to use one of these contraptions on my bed while trying to master the art of not overfilling it or allowing it to tip over as I lifted my bottom

I’m not completely incapable of using the bathroom. I may require some support and a assistance. Besides the very next day they had every intention of getting me up to show me how to get around the bathroom independent. I imagine it would have made life so much easier for the poor nurses in our bay on this first night post op!

With out The professionalism and support of all the wonderful nurses, doctors, porters and everyone else I don’t know what kind of a state I’d be in!

Night before admission

Here I lie in bed at 23:00 the night before my operation. I’ve showered in some awful chlorhexadine body wash, shoved naseptin cream up my nose 4 times today in the hope of cleansing the body of any harmful microbes that may be living on my skin, ready to attack when the surgeon opens me up. Contracting MRSA is not something I want getting into my surgical wound, so I have complied with all my pre op instructions to the letter!

My bag is packed, car fuelled and my emotions running high. I would be lying if I said I wasn’t totally petrified of what lies ahead. Not just the next 24 hours, but the next 4 months! My brain today has been in overdrive. Thankfully one of my lifelong friends paid me a visit today, which took my mind off things for a few hours. Laura has been a friend of mine for as long as I can remember, about 34 years I think. She is more like a sister to me than a friend, because despite living in Manchester she is always there for me. It doesn’t matter how long it’s been since we last spoke, every time we do it is as if we were never apart.

Everyone has been so supportive. I’ve been inundated with messages and phone calls today from friends, family and loved ones with their best wishes and messages of support, it’s actually overwhelming and I thank all of you from the bottom of my heart.

My husband has been a tower of strength, along with my lovely girls. When my world feels like it’s about to cave in on me, they have been there to hold it all together. Providing hugs, reassurances and plenty of cups of tea. My heartfelt thanks also go out to my mother in law Barbara, who had a very nervous and tearful Donna on the phone earlier today. Mom has an incredible way of putting everything into perspective and making everything better. In fact between My mother in law and husband, they have got everything planned over the next 7 days and I’m already truly grateful for everything.

Well I had better close my eyes in an attempt to get some kind of sleep, before the alarm pierces the silence at 4:45am. Im sure Wayne will update my nearest and dearest once he has any kind of news tomorrow following my operation and I will post updates as soon as I am possibly able.

Thank you every one for your kind words and support ….. Night Night!

Last day at work

So today was my last working day before my operation. I’ve worked in my local hospital for 20 years. Starting off as a fresh 18 year old Nursing auxiliary, then venturing off to college and university to become a registered nurse. In these 20 years I’ve made some incredible friends and met some inspirational people.

4 years ago something happened in my life that completely knocked me for six! But the love and support of my colleagues was overwhelming.

So today, as I walked the corridor for the last time before the op, I had so many hugs and well wishes from porters, volunteers, cleaners, nurses, ambulance workers and doctors. I feel so blessed to work in an organisation that feels more like a family. I fully admit I’m going to really miss work over the coming months, not the stress but the people; both the patients and staff that make going into work so worthwhile and rewarding.

See you all in roughly 6 months!

Pre- op Party

With a little over a week to go until my surgery. My friends, family and neighbours came together for my pre op party. With live music by Facta3 and plenty of food and drink, a great time was had by all.

I’m so truly blessed to have such wonderful people in my life. It’s these wonderful bonds that will give me strength during my recovery. I love everyone of you. Thank you for being there for me xxx

I do believe we broke our record yesterday with 46 people in our home.

Special thanks to Clive,Martin and my incredible husband Wayne (AKA Facta3) for agreeing to play last night and putting on a wonderful show.

I’ve got this!

Yesterday we arrived on our annual Blackpool trip. The roads were horrific with traffic, made worse by the diabolical English weather.

I drove the entire journey, as it distracts from the nauseating feeling I get as a passenger. We stopped part way to allow a comfort break and to get a late morning fix of caffeine. The one thing that struck me on this trip was how unsteady I was. More so than usual and as I stood waiting to pay for our coffee I realised it was like this since I had got up in the morning. I had almost crashed through the bathroom door first thing, like Bambi on ice! Had wobbles when using the stairs, both at home and in the service station and I almost went over in Costa coffee. Despite this, I fortunately managed to stay on my pins, and not end up giving the floor a hug!

This makes me wonder why some days are worse than others? Has this been steadily getting worse over the course of a few days? Or does my body just decide I need a challenge today? Well, I had several drinks, laced with alcohol and to my surprise towards the evening I felt more steady?? How does that even work?

I’ve been living with CMT all my life, but only really noticed since my teen years. I still don’t fully understand from one day to the next why some days are worse than others. What I can do to help myself. It’s almost like there’s a controller that sits in my brain ( a bit like the film inside out) and thinks “Ok, let’s make life a little bit interesting today” then has a giggle as they sit back and watch the day unfold. Sometimes this same controller decides he wants a day off, so flips the switch that says “Extreme Fatigue” to put me on my backside, while they go off for several days, leaving me overwhelmingly tired and a need to sleep. Then returning and allowing services to resume as normal.

I don’t think I’ll ever get CMT, I just need to learn that it is what it is, and take each day as it comes! But with each new challenge, I will always be the one that’s got this! It won’t ever beat me. In fact I stand in the face of CMT with my stubborn and independent personality and know that it’s really met it’s match! I’m not going to let this define who I am, I won’t let this get me down. I’m going to fight it and keep doing the things I love to do, even if it’s difficult or challenging, because that’s me!

Taking a tumble

Ok, so CMT causes me to fall over, this is a regular occurrence. I couldn’t tell you how often I fall as this varies so much. Sometimes I can go through periods when falling over is so frequent I could have 3 falls in a day. But then other times I can go a week or more with none at all.

The reason I fall is down to a couple of factors. The first being the instability and over mobility of the joints in my right ankle. This is the most painful of my falls and often leads to a sprained ankle and mega bruising. The doctors refer to this as inversion of the ankle. Having the structure of my foot transformed is going to improve this and hopefully reduce the amount of inversion injuries.

Another way I tend to fall is by tripping over my own feet. Sounds daft doesn’t it? But seriously, because of the foot drop I often catch my foot on the ground and fly!! This is where I obtain more visible injuries such as cuts and grazes to my knees and hands. Even though these injuries fade given a few days, my poor knees are battered with scars.

So walking for me is problematic and tiring. It takes so much concentration to navigate footpaths that have lumps and bumps. I find I’m watching the floor all the time and concentrating on where to put my feet so my ankle don’t twist and send me into a big ungracious heap on the floor. I also have to lift my legs higher off the ground from my knee, just to give me enough clearance of the floor, not to catch my feet. Often when I’m tired my walking suffers and I’m at greater risk of falling.

The majority of falls I am able to prevent, and they become stumbles rather than actually falling to the ground , stumbling into furniture or frantically trying to regain my balance as I wobble about trying to keep both feet to the floor. So when I say I can go through a period of time without falling over, that doesn’t mean I haven’t had a number of stumbles and near misses every single day.

This time last year was rather challenging. I had two quite significant falls within a 24 hour period. The pain was immense! Despite falling as often as I do, I have always got away with bad sprains, never a broken bone. Now those of you that has ever sprained an ankle will know just how bad that is. It’s murder! Last year I thought I had just badly sprained my ankle, yet went along to have it X-rayed. The hospital sent me home confirming it was nothing but a sprain. So I returned to my usual duties. Walking through the pain, I still went to work and continued on my 12 hour shifts. A week later I had a letter land on the doorstep asking me to go back as the X-ray had been reviewed and they had found a fracture in my ankle!

I was put into a cast boot, Given crutches and an appointment for fracture clinic the next day and sent on my way. Immediately I felt the pressure. I couldn’t drive, so my wonderful mother in law came to my rescue and brought me home.

The next day I returned to the fracture clinic and the lovely consultant explained I had chipped part of the bone off on my ankle. It was a stable break and I could manage without the boot if I wished. That came as a huge relief! At least I could go back to normal life after 24 hours of immobility. I guess in a way it gave me a 24 hour insight into what life would be like if I did have to go into plaster. Except when I have my op I won’t be able to weight bear at all! It’s going to be a long long few months!

Date confirmed! Planning Commenced!

Today I had a letter through from the Hospital, I was hoping it would contain my admission date, but alas, it was only a follow up letter from the discussions in the Pre assessment clinic with my consultant.

The not knowing when my op is going to be meant I couldn’t plan anything, both in my work life or my social and family life. This I have found particularly frustrating, so much so I decided to call the admissions unit today. I’m so pleased I did, as I was able to speak to someone that could give me the date of my admission; Monday 9th September! That’s only 5 weeks, this coming Monday! despite the fact I was kind of thinking it would be September, I still can’t help but think how soon that date is!

Now I can really start planning and organising and mentally preparing myself for the big day. Practical things, such as how much time Wayne will need off work in the early days and ensuring that all of my work is at a point that I’m happy to hand it over to someone else, that will be seconded into my post until I am able to return to work. Also, silly little things like, getting a non-slip mat to go in my shower and organising a key safe, so that when my family are away at work / and school, visiting professionals such as the district nurse are able to gain entry.

Whilst I was away in Liverpool back in May, attending the RCN Congress, I was speaking with a lovely lady on the Bloccs stand in the exhibition. Bloccs do some awesome plaster cast covers that are fully submersible in the water, allowing people to shower / bathe or even go swimming!! How cool is that? I was discussing this product with her, and mentioned my forthcoming operation and she offered to send me a sample. She asked me what plaster cast I’d be having and took my details. Several weeks later I was surprised to find the delivery of the cover waiting for me on my desk at work along with 3 sheets of stickers, a pen and some and some leaflets. Thank You Bloccs! This is going to be a valuable bit of kit in my recovery, meaning I will still be able to have a bath of shower without the risk of getting the plaster wet. Working for the NHS does appear to have some perks! Although these are not expensive to buy online, if I had needed too.

The Bloccs waterproof protector, supplied kindly by the lovely people at Bloccs!

Time to start writing a list of things to do and purchase between now and then! 5 weeks and counting!!!