Andy's Story

Andy Blagden is a young man, married to Charlotte and has 3 children; Lauren, Katie and Nathan. (The children were 12, 9 & 2.5 years old at the time of diagnosis).
Andy was diagnosed with a tumour in his spinal cord in June 2013. The tumour was at spinal level Cervical 3 going down to Thoracic 2 (C3-T2). This is incredibly high up the neck and the only option was to operate. This in itself was not without risk but after a 15-16 hour operation the tumour had been removed. The outlook was good. Then Andy became ill....
Early September Andy contracted pneumonia and then sepsis, Andy's kidneys then failed and he was put on constant dialysis for a month and required a blood transfusion during this time.
Andy came through all this but he now lives with the consequences; paralysed from the shoulders down and unable to breathe without ventilatory support, this is his ongoing story of rehabilitation with the goal of getting back home to his family and his future.

Monday, 18 January 2016

Birthday celebrations!

Andy's birthday is 2 days after christmas and each year I've tried to make sure his birthday is celebrated separate to christmas because, after all, most peoples are but thats not to say it's not difficult to know what to get him for christmas and then for his birthday.

The last 2 birthdays have also been spent in hospital (2013/14) so this year, in itself, was already good and made better by being together. So I spent a bit of time thinking about it and then remembered a comment from a friend/work colleague about cooking a romantic meal for us when the time was appropriate so, hoping that she'd remembered too, I asked her if I could make good her offer and she said 'yes' so that was one present sorted. I told Andy it would be really, really good food and did he remember when i'd come home from work raving about the lunch meal we'd had and he nodded and said he did so he's looking forward to that, as am I!!

Something else I got him was inspired by my sister's present for our Dad. A stadium tour of his football team!. He also got a cinema gift card off his brother for his birthday and we got one of my sister and BIL for christmas too!
 His presents were a bit more activity based as they sometimes suit him better, some activities are just as 'join-in-able' for him as they are for me, apart from a chocolate tasting session in which case I don't think id be invited, haha! I also like presents that happen in the future as its something to look forward to and we can celebrate his birthday again!

In the afternoon we had a meal booked at a restaurant courtesy of a friend who had organised it. I hadn't told Andy about it as i wanted to surprise him and when we got there first he did question why we needed such a big table!.
It was lovely to be back together in our usual Sunday group and after the meal we headed back to our friends house for pudding. He hasn't been there for 2 years, since the operation, so that was good too and we got a chance to look at the foundations for their hydro pool that they've since had installed and one day, hopefully, Andy will be able to join in the benefits of that pool. These are the friends whose children did the epic swim fundraiser for Andy on the 21st December that raised around £800 towards the building fund. Please take a look at their blog and also their gofundme page for the swimathon.

www.jtandht.blogspot.com
www.gofundme.com/blags-swimathon

After that I took Andy back to his bungalow, did a whirlwind turnaround of dropping kids off home and sorting them ready for the babysitter and then went out again with Andy to see Star Wars. We went into one of the access boxes at Cineworld, which are lovely. They are at the very back of the auditorium and feel a bit like a box at the theatre. They are accessed via a private entrance which requires cinema staff to escort you and no one can see you but you can see everything which is perfect for us. Usually a trip to the cinema coincides with medications needing to be given so this offers privacy for Andy and space for the staff so works all-round.

A good birthday!!

The birthday meal.

Sunday, 10 January 2016

CHRISTMAS part 2

Christmas was wonderful. 
Being together was wonderful. 
My mum's christmas dinner was wonderful.

It was so very precious to be a family again. 
To be able to talk to him in bed,
To be able to talk to him in the instant I think about what I want to say no matter how silly or banal. For Andy to see his children open their presents in the morning and throughout the day. 
For the kids to be able to see their dad when they wanted to,
To not have disability as obvious as it usually is.

It was a busy Christmas day; we had stocking presents opening, we went to my parents church in the morning, we came back and had a light lunch followed by more presents, followed by Christmas dinner, followed by the remaining presents, followed by games, putting children to bed who didn't want to go to bed and the Downton Abbey finale episode. Well, Andy didn't watch it. By that point he was tired and was quite happy to go to bed whilst I watched it with my parents and sister. 

Boxing day was spent mooching around in the morning and then taking 4 kids for some fresh air  around Newent Lake with my sister and dad. Andy spent the day in bed, quite worn out from all the activities of the previous few days. I was quite happy for him to take a rest day as the next day was his birthday and I had plans.............. well we did have a vehicle after all!!






CHRISTMAS part 1

Christmas has always been an exciting time for us and I've never found it difficult to organise/sort-out/deal with until 2013. That Christmas Andy was in ICU, unable to eat or talk to us. I was really quite anxious that year and found it very stressful especially as the kids hadn't lost any enthusiasm for Christmas and yet I had none. I was back at work doing 24 hours/week and due to work Christmas Eve and Boxing day - 12 hour shifts each day. I was highly aware of needing to be there for Andy but also of the setting he was in as well as the children's need to have Christmas as usual.
We did Christmas day and it was amazing, all the family came through at some point and we created a 'present' mess all over his bay. I was exhausted and Andy was exhausted and slept all evening which had been my intention - to enjoy Christmas with him but knacker him out so he didn't and couldn't dwell on us going somewhere for dinner and festivities without him.

The following year, 2014, Andy was in Stanmore, breathing unaided for a few hours, able to talk a bit and eating a few spoonfuls. We'd been out to a shopping mall and bought Christmas presents together. The children and I had made arrangements to stay up in London or Hemel due to our wonderful friends and my cousin who have been so good to put me up most weekends for 6 months and we were able to spend most of the day with Andy in the hospital. Christmas dinner though turned out to be appalling for us all as somehow all the vegetables and potatoes and little extras associated with Christmas dinner were missing and we ended up with chicken instead, but it was excellent as we were altogether and the future was looking far brighter than the previous year.

So, Christmas 2015 was always going to be much better. I had quite a lot of festive feeling this year and even participated in decorating the house and Andy's bungalow too. My sticking point though was I didn't want Christmas in the bungalow as it's not spacey once we are a family in it and I didn't want to spend all day together cooped up in the bungalow, unable to have space, either from each other or the care staff, or to cook anything decent. It was beginning to make me feel claustrophobic at the thought of it!
It sounds a bit like it's all about what I wanted but it was also about what Andy wanted and what we felt the children deserved but it does come down to me to take the lead and sort it. I put the idea to Andy about having Christmas at my parents place, the adventure centre, with all its space and excellent kitchen facilities and he agreed, as did my parents obviously, that that would be brilliant, so, to cut a long story short, we got funding for Andy to have the essential equipment he needs hired to the farm for a few days and I organised with the care team where we were going to be and they sorted that out with the staff and so it was that we were able to go over to the farm for Christmas.

I must acknowledge the excellent work of some more good friends in the work they did for me to make my desire come true but that turned out not to be needed, it really shows the care and respect for Andy to give up a good part of their day to do something for me knowing it might not be needed in the end so THANK YOU to you guys for that.


Road trip with my sister, niece, nephew, daughter and friend!

I've blogged on here before about going up to London to collect a vehicle from the Barbara bus charity (see link on rhs) so that we can go out and about as a family, although this still involves Andy in one car and me & kids in another car or some other formula as the 'Charlotte' bus only seats 4 + wheelchair and we go out as 6 + wheelchair.

So I booked the bus with the charity but unfortunately someone else had it booked out on the 21st December so I couldn't take it on the 18th December after Andy's appt. (see previous post) and had to go up on the 22nd instead. My quandary then was when would I collect it as my week was getting increasingly hectic with work, other commitments and moving us all over to the farm on Christmas Eve for the Christmas weekend and getting up to London by myself so I could drive it back.

My solution came in the form of my lovely twin sister who drove me up to London with her 2 children and my Katie after my shift at work. We, surprisingly, made good time and arrived in London about 7pm after leaving Tewkesbury at 4:30pm. We arrived at Andy's at 10pm to drop the van there whereby an equally wonderful friend, Claire, drove me, in the wind and lashing rain, back to Tewkesbury to pick up my car and eventually go home for around 11pm.
I did wonder if getting the van was worth it and had debated not getting it at all because another equally wonderful friend had offered to take and collect Andy to and from the farm and I was feeling quite exhausted (in-fact a friend today commented that I looked a lot better today than before Christmas!!)
Anyway, my doubts were wiped away when on Wednesday 23rd we all went over to Andy's parents house for lunch,  Andy hasn't been to his parents house since before the operation so his parents were really pleased to have him there as well,  then shopping in Cheltenham to get the children some clothes, which is a tradition Andy had started a few years ago. It was a lovely day and the kids enjoyed spending our money and time with their dad doing something they'd wanted to do and it made me so very much at peace with having made the trip up to London to collect it. And the ensuing trip back to drop it off!!

Saturday, 2 January 2016

London calling yet again

Andy went up to London again at the end of November for an MRI scan of his spine as his spine/tumour care is being taken over by the Royal National Orthopaedic Hospital. They have 2 sites, one in Stanmore and one in central London. This had been discussed in his October stay with his consultant but unfortunately the machine had broken at the time so he was booked in for an 11:30am scan in London. I asked the spinal unit if he could stay overnight which they agreed he could providing his staff came too. The trouble is whilst they might agree he can stay the CCG (clinical commissioning group) have to agree to fund the staff going up to stay with Andy. This includes travel cost and hotels for the staff as he has 4 over a 24hr period although quite possibly includes the cost of the bed too as I don't imagine London would pay that cost, but i don't know. Anyway the CCG agreed to it which meant that Andy could travel up Sunday and be ready for the scan Monday.
The scan was scheduled for 11:30 but didn't happen until 12:30 as they couldn't get the contrast in Andy and so had to do it through an iv in the end. This pushed everything back and meant Andy didn't leave for home until 5pm, getting home at 8pm. A long day for all involved.

And then back up again to central London on the 18th for the results.

I went with Andy for the results and to meet the consultant, but decided to go up the night before and stay with my friend in Hemel Hempstead, who also helped me wrap the christmas presents I brought with me because I had no other hiding place, and then I drove to my cousin's to park my car  friday morning as she is on the tubeline and did some christmas shopping whilst awaiting his arrival in London. It was good fun going shopping although I must admit my tolerance of shopping has shrunk somewhat these last 2 years so was glad of the call to say he'd arrived.
The results were that there is fluid around the operation site that needs to be kept an eye on which they will do in London and hopefully as we go up to the spinal unit for check-ups they will also check him out then too. Andy left about 4pm and got home around 7pm and i moseyed around IKEA in wembley before driving home, getting home around 9pm but having got christmas presents wrapped and other presents bought.

Westonbirt Arboretum

First things first, I shall apologise for being really tardy of late and not updating the blog but this is because we've been busy. Very busy! So busy in-fact i've had to go onto Facebook to try to remember everything - LOL.


So, apart from living everyday life: school, work, seeing Andy, shopping etc etc the first thing of note is that we went to Westonbirt arboretum's Enchanting Christmas. We went with the charity that took us on a trip to Bletchley park that I realise I completely failed to blog about but which was epic.

So, the charity is called Egalite Absolue (www.egaliteabsolue.org.uk)which means absolute equality and they run a 'jumbulance' which, in their case, is a converted coach designed to take wheelchair and non-wheelchair users alike on day trips that they wouldn't otherwise be able to do. Anyway to cut a long story short Andy's parents had put us in touch with the charity which was organising a trip to Bletchley Park which all 5 of us plus Andy's PA's attended together in the same vehicle. The weather was atrocious which kinda put a dampner on Andy as he got cold (had he done as I said he wouldn't have got cold but that's another story........) but we enjoyed the trip anyway. I in particular enjoyed the trip, having enjoyed the film "The imitation game" immensely.
So, getting back to Westonbirt, I suggested to the charity a trip out to the enchanted christmas would be a good one to do so they came and picked the 7 of us up plus my parents (nd a couple of others)and we all rode down to Westonbirt. Again it was lovely to travel together and to do an activity as a family together, We looked at all the exhibits and afterwards ate chips and hot dogs whilst listening to christmas carols being sung and made sparkly pine cones for the christmas tree!!


The Jumbulance in action.
Westonbirt highlights.