Kath Lewis

Well the cold has finally cleared up, but it left me with a nagging cough for a few weeks afterwards, and my ventolin use was higher than it has been for years. So my intention not to leave to big a gap when it came to my blog got scuppered, not many pictures either. I have also started my new Creon dosage, having been moved from the 25k capsules to the 40k capsules as I need to quite a high dosage with my meals. Therefore the new capsules mean that I need to take fewer units with food, which is definitely a plus.

My yoga is going well, and I seem to have got myself into a routine with it now, and Buddy has now taken to going asleep on the bed, thankfully, rather than trying to get in on it!! I have even treated myself to a new mat as my old one was getting a bit grubby, the nice surprise was that when I unrolled it, it had a lovely flower design on it:-)

I have however decided to cancel my gym membership, as much as I loved the aquaerobics, I am not getting there enough to justify the cost. You may remember that in my last blog I had spoken about my fitness tracker and that I had upgraded it so as I could use it in the pool, which may make it sound like it was now a waste. But I love it as it gives me a full record of my activity everyday and gives me the motivation to keep active. It is an excellent tool as it provides me with a picture of my day to day activity, and the contrast between good and bad days can be quite startling. It will also help me to provide both my nurse and consultant with more detail for my bad days, as the graphs help me to quickly find the dates in my diary I need to refer to for symptom details.

Unfortunately due to a bad day I missed the first local NET natter of the year, and boy was it a bad day, I was gutted to miss the meeting as it was also the first one in the new venue. So fingers crossed things behave themselves for the next one in April. I hadn’t been to good on the Friday before, and had had to cancel the hairdressers, although I did feel well enough in the afternoon to make some flapjacks for the meeting. I was very upset about being ill that Saturday as Ade had also been away with work in Germany for the week, and didn’t get home until late Friday afternoon, the last thing either of us needed was this. Starting at 2am Saturday morning, it turned into a long and painful day with no proper relief until about 10pm in the evening, I wont go into the gory details though…

My friend Bridgette was due to arrive for a few days Sunday afternoon, and I was hoping that I wouldn’t have to cancel her visit, we see little enough of each other as it is.   Luckily by Sunday morning, I was feeling a lot better, things were still sore and I was tired, but I didn’t need to cancel. It did take about 3 days for the pain to fully subside, but it didn’t stop us getting out and about, and we managed the obligatory visit to Trentham gardens for a spot of shopping!! I emailed my specialist nurse Sarah to let her know how bad it had been, and I know that next time this happens I really do have to bite the bullet, so to speak, and go in for observation whether I like it or not. So I have invested in some new pyjama’s just in case, as the last time I had new ones was 3 years ago when I had to go in for my biopsy.

After Bridgette went home we hosted a poker night, a small group of us used to play on a regular basis about once a month many moons ago. We thought the last time we had played was only a couple of years ago, as it turns out it was nearer four, and a couple of the guys didn’t know how things had changed for me. It’s funny how sometimes things fall by the way side, but it was good to play again although I was bit rusty and lost my buy in, I definitely need more practice!

We also had Arthur for a sleep over, his first this year. He said he wanted to watch the football with Moopa, but ended up baking cakes with me instead. He loved licking out the bowl and wanted them to bake quicker than they did, he kept checking the oven and was over the moon when they were done and cool enough to eat, with a cup of tea of course. He is mad about Minions too, and I can honestly say as much I like the films I don’t mind if I don’t see them again for a while!! Whilst he was with us, his mum and dad decorated his room, and were so excited to show it to him when we dropped him off. However Arthur was more excited about the cakes he brought home for them, and when he could have another one. They were chocolate and walnut muffins by the way.

I also got a lovely surprise from my daughter Ruth in Canada, she had shared an etsy site on facebook in early January which I had liked and mentioned that I loved the daisy picture that was on there. She ordered me a signed original, I love it and now just need to get it framed properly and on the wall, it made me cry as it was really such a lovely and thoughtful surprise.

My DNA results are also in, and it confirms that I really am half irish, 51% to be exact, which is good as my mother was Irish and I am very proud of my Irish ancestry. The rest of the break down is as follows: Western Europe 23%, Scandinavia 12%, Great Britain 7%, Finland/Northwest Russia 2%, Iberian Peninusla 2% (rumour has it that one of my grandmother somewhere down the line was Spanish, although I have yet to find a link in my family tree). As for the remaining 3% that seems to be split equally across South and East Europe and South Asia. There are no direct connections within my family tree on Ancestry yet, but I do have lots of other DNA matches to follow up on.

On a sadder note, in the last 2 weeks I have lost a couple of good friends to this disease. I had never met these brave strong ladies in person, but we had had plenty of chats and some good laughs. One of these ladies, my friend Karen, was also one of our admins on the NETS PALs forum on Facebook.  Having helped Derek and his wife Liz to get the forum up and running a couple of years ago she has helped a lot of people with this disease.  A very positive lady and a 10 year survivor, she will be very much missed. RIP Karen, we all miss you xx

“I’m not afraid of dying, it’s time I’m afraid of…” Interstellar 2014