The week just gone has been the busiest I’ve had for a long time, there was something happening everyday. It’s now Sunday and we are still busy but it’s more of a relaxed busy if you know what I mean!
Monday began with my regular trip to Rotherham to have my ECP, I was nervous again for no good reason other than I think I was worried about the whole week and how busy it was. As I have come to expect it was a lovely visit and I was well looked after by the staff, I even tweeted as much. They take an interest in each patient and what they’ve been doing or what they’ve done since last visit. I met some more ECP patients, the staff there have managed to create a very social environment.
On Tuesday when we arrived the nurses were discussing the tweet of the day, apparently someone had tweeted about how nice the nurses were on the ward. They didn’t know who it was who had tweeted it, so I confessed! It was great to see that something I had tweeted about a specific person/department had made its way back to them. Had a chat to the other patients and met a third who is a regular at Leeds like me. It was really nice to chat to her about Leeds and her own experiences. The weekend before she’d been away and had cooked dinner for 12 walkers, just shows what you can do with a terrible illness.
So with treatment done, I put my sunglasses on and covered myself in factor 50+ and we went home, all before lunch!
Tuesday afternoon was spent resting as best I could as I was very nervous about my clinic visit to Leeds, it had been exactly 2 weeks since I’d been home and the last 2 times I’d been home for 2 weeks I’d ended up back being admitted! This and the rest of the week was playing on my mind too.
Wednesday morning I was very nervous but I did my best to get up and get some stuff done, including booking my car in for a repair, which you would think would be an easy… However after explaining to the nice lady that my car indicates right all the time and it was not safe to drive, I was informed that I needed the RAC to confirm it was not safe so they would be round within 2 hours. I said ok and waited! My phone rang after about 15 mins and it was the RAC. I explained the problem and the technician was very helpful, he explained that there was a known fault. He also asked where I was. I explained I was at home and he said I would be ok to drive to my local Ford dealer, 2 mins away. I asked him to report this back as they wouldn’t listen to me, he said it would update but I needed to call them. So I called the lease agency again, explained what had happened and like magic my car was booked in for 8am the next day. This in itself I hadn’t thought through, Natalie and Lauren were going on the school trip in the morning so I had Ethan to look after until I took him to the child minders! Whoops. All sorted I would go slightly later and my mum would meet us at the garage and drive us home! Sorted.
My clinic appointment was praying on my mind, there was a fair bit needing to be discussed and also I had a late appointment meaning a rush to get to the pharmacy after clinic. My mum was coming with me as I have struggled with my last few, Natalie came to the last one and its good to have company.
After lunch my mum and I set off in plenty of time, it helps to get there early so they can take bloods and get results back before your allotted clinic time. My normal bloods were ok and my livers seemed ok, one had risen due to different drugs. I went through other things with the Dr and one of my drugs was reduced, it felt like a pretty good visit. I was due back on Friday for my AV medicine and the Dr was going to come and find me to discuss the bits we couldn’t sort today.
We were very quick for clinic and I made it home for tea with the kids which was nice.
Thursday was a milestone day for me, I was returning to work, I had come close to this before but I was taken ill with GVHD so was unable to begin, now I was in a position to start the long path back to full time work. First up though was taking the car to the garage and before that getting Natalie and Lauren packed off for their school trip to Harlow Carr Gardens. Once they were on their way myself and Ethan got ourselves sorted and I took Lauren’s car seat and the pushchair out of the car and fastened Ethan’s in. We drove the short distance to the garage, where we met my mum and put Ethan’s car seat into her car and then we all went in. This was Ethan’s first visit to a garage and he was very excited to see all the different cars. I sorted out the repair with the service chap, he was excellent and I said there was no rush for the car today so if they needed to keep it that was ok. We then had a sneaky look at the cars, I have to say I particularly like the new ford grand c-max. Plenty of kid space and lots of toys up front too
My mum drove us home and Ethan and I set about playing with his farm, rather than having your standard farm animals though we had a farm of dinosaurs! Eat your heart out John Hammond (Jurassic park reference)
At about 11 I fired up the old work laptop, and began the ritual that logging in from home. I had very mixed emotions whilst I did this and will blog returning to work in more detail. I did just over an hour and I was shattered and ready for my lunch, a little boy was ready for his lunch too!
Ethan had his jam sandwich, a packet of crisps and a chewy bar, I had a ham, cheese, cucumber and Kashmiri pickle sandwich and a packet of crisps. We then got his bag ready for his afternoon at the child minders so I could get some rest. Ethan kept saying he didn’t want to go but this is normal and he loves it when he gets there especially as Izzy one of his friends is there and Vicky the childminder is excellent too. She would then take him to school to meet up with mummy and Lauren after the school trip. My mum drove us the short distance to Vicky’s house and in he went happy as you like and I returned home for some rest. I didn’t really rest in fact I tidied up as I knew everyone would come in tired and the easier we could make the evening the better.
Everyone returned home after school and Lauren told me all about her school trip and that she was not with mummy’s group. She told me about all the flowers she’d seen and told me about edible flowers and buds. She even knew root vegetables and fruit.
Friday started early as I have to take some tablets three hours before my treatment to protect my kidneys so I was up at 6:30 to take those. Shortly after the whole house was up and it was a quick getting everyone ready so that when the grandmas arrived we were ready. Grandma without glasses was doing the school run and then looking after Ethan so that Natalie could come with me to the hospital. Grandma with glasses was driving us to the hospital. We arrived in plenty of time but were still waiting for nearly 40 minutes before we were taken through to the day unit. The nurse showed us to a new room they’d configured, this room used to be full of beds but now had only one bed and a whole host of chairs so they could take more patients. The sister explained that they were changing the way the unit operated and they were trying out different configurations to get the best system to work before they switched over fully in January 2013. It’s a credit to them that they are still able to deliver care whilst they do this, most businesses would shut down for a week, they simply can’t.
My treatment starts with an hours worth of hydration before the drug is given, again to aid protection to the kidneys. Natalie and I played cards, as we always do whilst the time ticks away. My drug was then given to me along with more hydration, this lasts for another hour. However after just 10 minutes I started to shake, so we buzzed the nurse and she stopped the treatment, did my obs which were fine and then went and got the Dr. We had a short wait for the Dr as she was seeing a patient in clinic at the time. When she came through the shaking had nearly stopped, she explained that I needed to continue as my viral count was still high. She prescribed some cover medicine to help, this made me drowsy. Whilst she was with me she explained that my liver counts had blipped and that I needed to increase my steroids to the maximum again and that she had arranged for my visits to Rotherham to go back to weekly. This made me very anxious and I felt very upset, thankfully Natalie was there to offer reassurance otherwise I think I may of broken down. Once my treatment was completed and the subsequent 2 hours of hydration were complete and I had been to the toilet about 100 times we went home.
I needed to collect my car from the garage as they had called to say it was ready, they had fixed the fault. We went home first and dropped some bits off before zipping to the garage to get my car, they’d even cleaned it which was nice.
Once we got back home Natalie and her mum got the kids into her car and went shopping as we had nothing in. My little sister came round to brother sit as I was still very shaken from the news that my liver numbers had blipped. I put the car seats back in the car before she told me to sit down and rest. We watched Flash Gordon which I am sure you’ll agree is a classic. It had just arrived from Love Film. When Natalie returned home we had pizza for tea before putting the kids to bed and relaxing for the evening.
Saturday was a big day in our house as we began potty training Ethan, now I am sure all parents will agree this is a very stressful thing to do. We thought we were prepared, some sweets for treats, DVDs to watch and 10 pairs of assorted pictured pants including Spider-Man and Thomas the tank engine. By lunchtime we had run out of pants and I needed to go and get some more, not only that the bread purchased the day before was off, it’s use by date was only a day after it was sold… Very naughty. Anyway I went with Lauren into town to find some pants and get some more bread. It felt very strange being out and about, it felt almost normal but at the same time I was very scared. Lauren was a little angel and did as she was asked and talked constantly telling me things she’d seen.
While we were out shopping I was shocked at how many coffee shops they were around the town hall, 4 to be precise but as someone tweeted me after I tweeted about it there must be a demand as they were all full.
Lauren and I had a successful shopping trip and returned triumphant with bread and pants!
Ethan slowly got the hang of the potty and on one occasion took himself to the potty and did a wee…
I made tea whilst watching Leeds Rhinos in the grand final, which they won. Before we put the kids in the bath and then bed. Natalie and I then did my IV before settling down to watch some Saturday night trash tv, lets face it there’s nothing on these days! We did avoid ‘strictly x-factor one hit wonders’ though.
Today more potty training was planned along with a trip to the farmers market, there was just one problem, the farmers market is next week! I got the wrong week so we went into town and opted for a coffee from one of the many coffee shops instead. We then headed home for more potty excitement. After lunch I took Lauren for a scooter and to get some more milk and bread. When we returned Lauren’s uncle Philip and Auntie Kirsty were at home with her cousin River. I’d not seen River for a long while and he has grown somewhat and loves his cars like Ethan. We all had a good natter and I lent Phil my spare iPad case as he’d recently joined team apple but not got a case at the time he got his iPad.
When they had left I quickly put on the dinner, roast ham etc, Natalie tended to potty duties. Once the dinner was done and eaten which is about now, we cleared up and have now chucked the kids in the bath so we can have some peace and quiet!
Like I said a busy week and next week looks like more of the same now I have an extra trip to Rotherham midweek.
Oh and we’ve lost Lauren’s homework!