Friday

18 days post spinal fusion.

We are leaving my parents and going home this weekend. Sunday to be precise. Paul has an 86 mile cycling commitment for his neuroblastoma charity on Saturday. He will drive to us on Saturday night, once he is finished, and we will all go home together on Sunday morning.

I haven't been in my house, surrounded by my things, my life, for three weeks. I am very nervous. My parents have looked after us with such love and care for two weeks, and I have wanted for nothing.

Paul is working from home next week, so he is in 24/7. The Bigs are back at school, so they are sorted day time. Niamh will fall in with whatever, as she always does with amazing grace. I know my fabulous friends will be round all the time. I know that I shall still want for nothing. But somehow, going home represents a return to a normal that I'm not feeling right now.

I need to acknowledge that I am a new normal I guess, and recognise how lucky I am.

On a physical level I am improving daily. I have been out for two 'walks' this week. On Tuesday, my dad drove me to the end portion of a little route my mum had taken the kidlets on, with their bikes and scooters. I probably didn't walk further than 250 yards, before being driven home (and then going for a nap!), but the act of being outside was uplifting.
On Thursday my mum took the Bigs to an activity at the library. This encouraged my dad and sister, together with Niamh, to take me out for a walk. I pushed myself to my limit yesterday, by the time we got home I was physically uncomfortable and ready to stop. I managed 0.8km.. In 34 mins.. I'm immensely proud of that. I was running 5k in 34 mins before Christmas. What a base line for improvement!
Lucy and I are already talking about my come back strategy.. Once I've ditched the walking sticks, I will need to learn to run again, and get back on my beloved bike.

Range of movement on day 18/ improvements from day 13:
* I am still shuffling with my walking sticks, but I am definitely getting quicker - on the stairs too. I am even brave enough to use just one stick on occasion.
* With the help of my 'handy grabber' (a long metal stick with a pincer hand thing on the end) I can now shower and dress myself. It is painstakingly slow, but it is something I can now do for myself. Apart from socks! Socks are so frustrating! Bebe is particularly good at helping me with my socks. Niamh is the queen of slippers.
* 'Log rolling' in and out of bed is so much easier. I am already forgetting just how stiff and awkward I was only last week.
* Bending to sit is still improving.
* I am still unable to bend forward because my back is too stiff. I can lean forward a couple of inches and then everything just stops. There is nothing else to give. We are still putting my food plate on a tin to raise it up for me to eat etc. Physio starts next Friday and I am eager to re-train my muscles into being useful!
* My wound is looking amazing, all 19cms of it - do I start referring to it as a scar now? The swelling is getting so much better. It is still bruised and tender, but the new pink skin is shining through. Being on my back, I obviously can't see it easily, so I have a million pics of it that I scrutinise regularly. To have such a thing on my body, and to not be able to see it, frustrates the life out of me!
* There is no change to my 'blank' skin. It is a horrible burning sensation.
* I am really down on my painkillers, which I'm thrilled about. There is no back pain as such now, my discomfort comes from a place of healing I think. My body has to get used to having metal in my spine and that will take some getting used to. Things ache and things are stiff, but there is none of the old 'catch' pain. I have experienced my first post op sneeze this week and it was a revelation. No pain! It used to cut me in half, and on a bad day, make me cry. Not any more!

I'll leave you with a pic of the crochet I have been learning this week. A gift to keep my hands busy. Plus a hideous pic of me wrapped up, post walk, in my mums big chair, choosing a necessary choccy biccy.. My sister took the photo and I told her it wouldn't make the final editors cut.. Well I guess it did!

Thank you for reading Clanettes. Thanks for your support x x x

Friendship

By my own design, I don't have many friends. I am far too judgemental, I find social situations awkward and I can't be bothered with drama. I find the whole thing exhausting. I will take you at face value - if you say no to something, or drop out of contact, I will accept that and move on.

So the friends I do have are pretty exceptional. The cream of the crop you could say.

Writing a post about friendship is quite dangerous really. How do I give credit where credit is due, without singling anyone out and potentially forgetting little things other people have done?!

Frankly I can't.

But what I can do is write down the many amazing things I have experienced through friendship in the last three weeks.

Friends will throw you a party, make cakes and a playlist for you. They will clean your toilet, and wash your floors, even when they aren't feeling very well themselves. They will light a hundred candles for you and pour their hearts into beautiful notes and cards. They will bring easter eggs to you in intensive care. They will drive to visit you in hospital, when driving on their own, and at night, terrifies them. They will calmly watch master chef in your hospital room, and make you feel valued, whilst hiding the twitch about their drive home. They will provide you with endless distraction whilst you recuperate. Treat you to heartfelt gifts, chocolate and send flowers. They will write you amazing texts to make you smile and they will lift your spirits.

I can't name you and shame you, but you know who you are. Thank you.
Love you x x x x

On the mend

Sunday
13 days post spinal fusion

I am definitely on the mend. It is a relief. Two weeks tomorrow is a long time, but finally I can definitely see, feel and notice small improvements in all aspects of me both physically and mentally. Phew!

As advised by the hospital, we took my bandages off permanently yesterday. There is no dressing on my wound now. My sister spent 20 long minutes soaking it all off and delicately peeling away the layers off to reveal a very neat incision.

My first tattoo was directly over the sight of incision and whilst I never mentioned it to the surgeon, I did wonder what it would look like afterwards. I am delighted! My surgeon is an artist! Such a neat, thin, straight wound. 19cms straight through my tattoo, but it has been precisely sewn back together and looks amazing (if cut in half!).

Since the bandages have come off, it was become very swollen, but conversely I have noticed an improvement in my core movement - the dressings were restricting me like a corset. I can now twist and bend a little further than I could before. Although it is scary with them off, I am constantly worried about nudging it and what my waistband will do to it.

It feels like I notice more numb ('blank') skin on a daily basis. The top of my thighs, buttocks and all over my back are just a swirling mass of skin with sensation mixing into 'blank' skin. When someone else touches my 'blank' skin, it feels like it should be 2 ins thick and muffled, but when I touch it, it is just skin. The boundaries between sensation and 'blank' skin seem to burn.. You know when it snows and you go outside without gloves and your fingers get so cold, that when you come back inside, they seem to burn as they warm up? That burning is the sensation all over my back, thighs and buttocks, as something touches the boundaries between my skin with sensation and my 'blank' skin. For example, pulling pants on, or sitting in a chair, burns until I am still. It is weird. I hope it settles down.

Paul took the kidlets to visit his sister and his dad in Cardiff this weekend, leaving me to recuperate on my own with my parents. Everyone needed a change of scenery. It has been quiet and restorative here. I have swung wildly between missing them like crazy and being relived at the peace. Before they went they had taken to putting on puppet shows for me, and I am eagerly awaiting their return tonight.

Range of movement on day 13/ improvements from day 8:
* Walking is still a slow shuffle with walking sticks, although I think I may be getting quicker. Stairs are definitely less of a challenge.
* I am now sturdy enough to shower myself, although I cant dress my lower half.
* 'Log rolling' in and out of bed gets easier every time I do it.
* Bending to sit is still getting easier, although it still gets worse as the day goes on
* I am still unable to bend because my back is too stiff. We are still putting my food plate on a tin to raise it up for me to eat without bending, and I brush my teeth using a pot to spit into etc.
* I have talk about my wound - it is swollen and bruised and tender and itchy, but healthy and neat.
* I have also talked about my 'blank' skin. I just hope it starts to improve, it is a horrible sensation.
* My feet are cold ALL of time. I have never experienced this before and can only blame the surgery, although I don't know why. Hot wallies rule the world!

All in all I am pleased with how things are on day 13. When I think about my fears beforehand, I have found the pain to be very real, but also very manageable.
I seem to have escaped all of the warnings that could have gone wrong during surgery, for the short term at least.

Most importantly, I have not felt any of the old pain from beforehand at any point and I am starting to dare to believe that I will actually get better and go on to be pain free.

Slowly, softly, surely, stronger, bigger and better.

Thanks for reading xxx

The Cavalry

I'm not sure that The Cavalry is the best term. We discussed it and googled many terms, but none of them are quite right so we settled on The Cavalry. But I think Honour Guard may have been a better term. Not honour guard as it is now a days, a bunch of soldiers forced to guard their leader, but as I imagine it would have been during the Roman invasion.

As an aside, if you ever get the opportunity to read the historical fiction books 'Boudicca', then you simply must, must, must. An honour guard to them was made up of family and best friends, sworn to love and protect each other until death.
I like to think I have 4 people in my honour guard.

Today I'd like to talk about my sister. Honour Guard and Cavalry woman extraordinaire.

Em lives a mile from my mums house, and as she is still unable to drive from her own surgery 3 weeks ago, she has walked down every day to help me shower and dress myself. As if by magic, she always arrives just at that frantic moment when you need back up the most. Like a sharp shooter, she surveys the situation, takes out the trouble maker, diffuses the ticking time bomb and enables everyone to get back to what they were doing.

There is nothing she hasn't turned her hand to this week : hair washer, sock putter onerer, breakfast maker, wound dressing changer, personal shopper, advise giver, nappy changer (not mine!) and smile giver.

You have been amazing this week Emooses. Washed me when I couldn't wash myself, supported Paul and M & D, and cared for my children. Love you xxxx

The Matron

After writing about The Pharmacist, I felt I needed to express my immense love and gratitude to The Matron. Finding the correct title was difficult, because it needed to cover and fit such a vast and ever changing role.

ma·tron
/ˈmātrən/
Noun
A woman in charge of domestic and medical arrangements at a boarding school or other establishment.

But after testing it out, I think it does fit.

When I went into hospital on the 25th, my mum without question came and stayed at our house. She took over my role and with the support of my dad, saw that the children went to school, that everyone was cared for, fed, watered, clean and in one piece, allowing Paul to concentrate on me. When school broke up for Easter, my parents whisked the children off to their house.

I have been out of hospital and we have been staying with my parents for a week tomorrow, with another week still ahead of us. My mum, The Matron, is just amazing.

Above and beyond all of your care, love and parenting of me and Paul, and all of your parenting of my kidlets. I shall forever be grateful for the extras- in the middle of the night, you have helped me limp to the toilet, you have cuddled me until the shivering has stopping, boiled the kettle and provided more hot wallies than I have ever relied on before and you have listened to my fears.

Love you Mummy xxx

The Pharmacist

Monday night.
One week post spinal fusion.

Pain governs my world right now. I used to think that tooth ache was the worst pain in the world. I now laugh in the face of tooth ache.
(Please please little old teeth of mine, this is not a contest, don't fail me right this minute, I'm attempting to make a point.)

My spine and my hips and my wound all ache to different degrees, most of the time right now. My wound is so swollen it is currently sticking out in a triangular shape (like I am growing a dorsal fin!), past my bum. Sitting is difficult to get comfy. If you had stitches in your finger, you would keep it out of harms way, you wouldn't attempt to rub it on the back of a chair, let alone put weight on it..

The hospital sent me home with 5 varieties of pill, none of them particularly effective (in my opinion), and my Dad took over the difficult job of pharmacist. It is difficult because I am like a junky constantly looking to score. The pills all differ in their qualities and in their quantities, so my amazing Dad set up a spreadsheet of pain relief to keep us both on track with what, when and why.

He spends all day clingy to the schedule, trying to eek out my pain relief to its maximum. I spend all day trying to sell my soul for an early hit 15 mins before its due, aware that 15 mins each time equals an hour by the end of the day... Which equals a looong night.

Lets not even get started on night times yet.

My pharmacist is doing an amazing job, even if I'm not over-flowing with immediate gratitude. Despite the pain, and my constant bargaining (whinging), I know what a brilliant job you are doing Daddy and I appreciate you so much. Love you xxx

Tuesday

8 days post spinal fusion.
This time last week I was embarking on my 2nd night in intensive care.

Paul returned to work today, and this morning my mum and my sister took me to the dr, whilst my dad stayed at home with the kidlets. My sister took pics of my first foray back out into the world - wearing my slippers.. Ha ha! The trip to the drs was exhausting, the car ride was so uncomfortable and I was relieved to come back to the safe cocoon my parents have created.

I went to bed when we got in (a nana nap!), and enjoyed listening to the children playing in the back garden through the open window. They played 'prince and princesses' (who apparently cuddle, but do not kiss!) and ran around. Blissful.

Range of movement on day 8/ improvements from day 5:
* Walking is still a slow shuffle with walking sticks
* I can now lift my arms above my head and I washed my own hair in the shower this morning! Go me!
* 'Log rolling' in and out of bed is still excruciating
* Bending to sit is getting easier, although it gets worse as the day goes on
* I am still unable to bend because my back is too stiff. The kidlets now know to go to the stairs and poke their heads through the banister so they are tall enough to kiss me, and we have taken to putting my food plate on a tin to raise it up for me to eat without bending
* My wound still ITCHES, and rather than feeling like it might burst, its starting to feel tight. I think this is a good sign of healing.
* I have noticed that I have a few 'blank' patches of skin around my wound, where I can't feel anything. I am aware of pressure, but no sensation. So scratching is frustratingly pointless!!

I leave you with some pics of bits and bobs from the last couple of days - plus my x-rays taken when I left hospital last Friday.. They make me shudder!