Kim Wainwright

Kim Wainwright

End to End Virtual Running LEJOG

Supporting

Total raised so far£0.00

Total plus Gift Aid: £0.00

Target£0.00

Raised offline: £0.00

My story

[p]19/01/2021 update[/p][p]Finally had an MRI last week to see if there was a reason for the deteriorating leg mobility and feeling. Have accessed my images from previous scans already, so went to find the new ones and read the neuroradiologist report.[/p][p]Looks like there is another area of concern. Exact words being "the possibility of a second intracranial tumour (? low grade glioma) should be considered". Initially I thought maybe this was the bit of tumour that couldn't be removed, but a) it was there on my very first scan before any operation, and b) there was no dural based recurrence or new tumour. Meningioma are dural based. Glioma are a whole different kettle of fish.[/p][p]Multi disciplinary team meeting happens every Tuesday morning, so hoping I get discussed so it's not too long before I hear something.[/p][p][br][/p][p]874 miles is a long way, even if you have 365 days to do it in...[/p][p]In a previous life I ran. Never very fast (apart from when it all came together in 2013 and I smashed my half, marathon, 5k and 10k times before a hernia repair in Jan 2014 derailed things), but I am built for stamina rather than speed. I could probably go End to End and back again on the fuel I'm carrying.[/p][p]But things went a bit wrong in 2020 - in more ways than one![/p][p]December 2019 saw me having my first ever MRI scan to rule out a tumour causing the pulsatile tinnitus that had got progressively worse over the previous couple of years and was now constant. They ruled out a tumour causing that, and found a tumour that caused it! Just a different one, in a different place.[/p][p]In the February I met Roger (the Lodger), and he wasn't hiding out in some corner of my brain, oh no, he was there in all his 74.1 x 56.9 x 39.9mm glory. The slowly growing lump on the top of my head was not the 'not worried about it unless it grows a lot bigger) cyst the doc suggested, but Roger infiltrating the bone.[/p][p]Then lockdown. [/p][p]I was scheduled for surgery at the end of April, one of many farmed out to a neighbouring private hospital to keep the beds free for covid patients. My autism allowed me to see everything with an 'oh, **** happens, let's get on with it, it's just something gone wrong that needs fixing, it will all be ok' attitude and I didn't dwell on what could go wrong.[/p][p]I was left at the door by my husband the morning of the 29th April. The operation was 4 hours, I was told, and I woke up mid afternoon. Ooh, this is interesting, I can't move my right leg... My right arm is a bit off too... Oh, and why can't I get my words out right? I think the morphine must have been in full swing as I found everything slightly amusing.[/p][p]The next morning I managed to pass the stairs test and got kicked out less than 24 hours after waking up, with a bit of tape stuck over the large horseshoe shaped incision round my head. Things very much became a tad less amusing after that. Although speech went back to normal quickly, my arm took a bit longer, but the leg was agony, a frustrating sort of agony, and felt like permanent pins and needles. Not the full blown tingling, but the bit in between numb and that point, like you want to shake the feeling back. Only I couldn't shake it. I couldn't lie flat due to the pressure in my head, had a semi-permanent headache, and spent two weeks trying to sleep upright on the settee. [/p][p]Things started to get better. The leg settled into a fuzzy numbness, but with a feeling something was wrapped round my ankle, and my first 3 toes felt like stone. But I was getting out and walking. Half a mile at first, but up to a mile. It was still lockdown, peaceful and warm, and as frustrating as the leg was, it was liveable with. But then it started getting heavy, and I was back to walking with the stick. And a patch of wound hadn't healed as well...[/p][p]Friday I spoke to a nurse. Saturday I went to have it checked, swabbed, bloods taken, and sent home with antibiotics just in case. Called back on the Monday to have another look, and didn't go home for a week...[/p][p]That evening, June 1st, saw the plate they'd replaced the bone with being removed due to infection. I was put on different antibiotics, and kept in for observation. The next day I was told I needed IV antibiotics. I was finally allowed out on the Sunday, though back in for a couple of days the following week to restitch a bit that was leaking, and launched into 6 weeks of oral antibiotics. They have annihilated my gut microbes!![/p][p]I walked in to hospital slowly with a stick, and left as if walking on air. I was soon able to start 'running' again, though it wasn't much more than a fast walk, in reality, and I was looking at a training plan for the half I always did in the October. However, after half a dozen 1-2 mile runs I thought maybe I'd been too optimistic as I was getting very tired. [/p][p]On the 26th July I completed the virtual Hilly Helmet Challenge (www.orangehelmetevents.org.uk/events/the-hilly-helmet-challenge) in aid of Brain Tumour Support - 4 and a quarter ish miles, with a hill. Wearing a safety helmet (as part of my skull was missing) and a home made Viking helmet on the top (I won best female helmet). Then things have just got worse again. A CT scan in August couldn't find anything, and blood came back fine, so it was just waiting until a new plate had been made (in Sweden, but didn't let me sing like ABBA), and they would take it from there.[/p][p]So that's where we are now. I've greatly reduced mobility in my foot, pain in my ankle, and if I don't concentrate I catch my toes on the floor. This has already led to a couple of falls and I am waiting for the day I go head first down the stairs. My plate is ready, but the hospital are now only doing urgent and emergency cases due to the rise in covid, so it's a case of sit and wait.[/p][p]But I'm stubborn, and can feel what residual fitness I have left raining away rapidly as I sit around not doing much. So I needed and incentive. And I miss the bling! [/p][p]I am again raising money for Brain Tumour Support, but adding The Brain Tumour Charity as well as they have an awesome Facebook group that has been so helpful, and where I learned everyone names their tumours lol, as well as Smile4Wessex, the charity of the neurological centre at Southampton where I am being treated.[/p][p]Luckily my tumour was a grade one meningioma, and most of it was removed, but don't think being benign means it causes less trouble than a malignant tumour. Mine was large, but I had no symptoms other than a tingly arm a couple of times before my op, which I learned were focal seizures. And even the smallest of tumours can cause catastrophic damage depending on location. I'm lucky mine was in an area of the brain dealing with movement and sensation, I don't think I could handle losing cognitive function...[/p][p]Life goes on. I'm not accepting this is the rest of my life, yet also trying to come to terms with the fact that removing something that was yet to make it's presence known had left me disabled. [/p][p]See you in Scotland!![/p]
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Supporters


May 1, 2021

Carolyn Ballard

Well done kim x

£5.00


Apr 30, 2021

Molly

Kim not creative myself so this would be my hell, I would rather swim 100 miles. Good luck 😉

£10.00

plus £2.50 Gift Aid


Apr 24, 2021

Sharon carter

Great idea

£5.00

plus £1.25 Gift Aid


Dec 18, 2020

Janis Brown

Best of luck in your journey Kim - take care and don’t do too much xx

£15.00


Dec 16, 2020

Martin Pearce

Good luck Kim, great causes

£50.00

plus £12.50 Gift Aid


Nov 30, 2020

Anonymous

£50.00


Nov 24, 2020

Phil Shorter

Great effort from a fellow M

£5.00

plus £1.25 Gift Aid

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