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Friday 9 August 2019

Writing again – My Year so far

It's about six months since I last wrote here, sorry about that, but I am going to try and use this blog more now. This is another update post, after this, I should be able to vary what I post about more, but when I write infrequently it is necessary each time I come back

Firstly and most importantly, my health. In January I mentioned having to go on Rituximab; this happened in February.  It was slightly scary at the beginning due to the severity of the drug, but in the end, I was very lucky not to have any bad side effects. And the really good news is that it worked. I have now been off steroids for a couple of months and my platelet count is still increasing. And I can feel my strength and stamina increasing.

Now for other things that have been going on this year so far. In February, days before I started my treatment we had a family dinner, after which I along with my brother and nephews decided to go on an observation wheel that was temporarily in Cheltenham. This was a wonderful experience because it gave a very different view of the town. In May I had a day visit to Bath which is one of my favourite cities and didn't disappoint this time, the weather was perfect too. In June I went with my parents on holiday to Seaton, Cornwall; although the weather wasn't perfect we had a good break and enjoyed the area including visiting Plymouth. The end of June was my birthday and I had a brilliant day celebrating with friends, shopping in Gloucester Quays in the afternoon then a meal in the evening.

I have also been enjoying my photography, luckily Cheltenham and my local area makes this quite easy. Also had some good cinema and theatre trips.


Plymouth, Seaton, Bath and Cheltenham from Observation Wheel

Friday 25 January 2019

Backwards and Forwards part 2

The last post focused on my targets for last year / this year. This post is more about what happened last year and what I would like to think might happen this year.
The year started well. Before this time last year I thought it would be the year I started to do a lot more travelling on my own, and maybe I could get some money from my writing whether it was this blog or fiction. But that stuff didn't happen. I had been feeling a little bit tired, but nothing too unusual when at the end of January I had a routine blood test at my GP. That evening I had a call from the GP saying I needed to get to A&E because the test had shown up a problem. As I mentioned in my post back in July, I have a condition called ITP which affects the number of platelets in your blood, most people have a platelet count of over 100, a safe level is 30, at this point mine was 11, in-case you don't know the platelets help clot your blood.


I was put on a strong dose of steroids for a few weeks and then came off them completely a few days before my check-up with a haematologist. That was bad for my body as when I came off them I was very ill, and the day of my check-up, I got a severe nose-bleed that wouldn't stop. We went to the appointment, but I ended up in A&E, and actually spent a few days in the hospital, while they first struggled to stop the nose-bleed and then gave me blood to improve my platelet count. It was now 9.


Since then I haven't been as bad, but there have been times when I have felt very ill indeed, lethargic and with very bad headaches (probably caused by the steroids.) They put me on a high dose of a different steroid and they have been reducing the dose since. Unfortunately when it gets down to the very low doses my platelets still slip to a dangerous level. The problem is that a scan showed that my bones were being affected by the steroids. Yesterday I had a check-
up with my haematologist, and they feel I need a different treatment. The next step will be to have some doses of Rituximab (a drug which is used for patients with ITP among other things), which will have to be given at the hospital either by injection or intravenously.


On the whole, it felt like a dark year, but there were good points too, like the family holiday in the summer and I do feel like I'm stronger emotionally through having been through this. Onto this year, even though nothing is certain yet (and I'm learning there are fewer certainties in life ha-ha), but my ITP should be manageable before the end of the year, I'd like to be able to do some of the things I was planning for last year. I would like to make another train trip on my own this year, somewhere quite local, and a hotel stay on my own. All small steps to becoming more independent, and being able to travel more, which is my big long term goal, there are so many places in the UK and beyond I'd like to visit.


Looe, Cornwall, town we visited this summer

Friday 18 January 2019

Backwards and forwards part 1

Here I am again, another year and still blogging, though I don't have a lot of ideas for posts this year yet, so if there is anything you'd like me to write about, let me know. For this post, I'm going to look back on last year, and then forward to this year. This post will be about my targets, there will be another more diary post soon.

To start with, how did I do with my targets for last year?
Living Life more – well that didn't happen as much as I would have liked, it has been put on hold by other things, so I'm not upset with myself that it didn't happen.
Giving into fear – this did happen in a way I didn't expect. Throughout the year of being ill, quite scarily ill at times, I learned to be not scared of how I was feeling. I'm also a lot better around needles/hospitals now. (more about this in my next post)
Writing – well, I only have this blog and there aren't as many posts as there could have been, but it's an improvement from other years, so yes progress.
Photography/picture editing – Yes, I did a photography course online in July which I enjoyed and learnt from, also I now have a new phone with a brilliant camera. I'm taking more photos, and I think they're better, could do more editing but I still do some.
Closer to God – Not sure if I made progress with this, although He has brought me through a tough year and that has had a positive impact on my faith.
Love Myself more/self-confidence – Yes, I'm better at this.

On the whole, I am very happy with how much I did achieve with my targets last year. So new targets for the New Year – although it's pretty much the same stuff actually.
Living Life More – I really hope at some point this year, I will be to go on more of the trips I'm planning, until then watch more carefully how much I spend on processions and save where I can for experiences later.
Not giving into fear – Continue to do this in my daily life and hope I get the chance to push myself in the areas I want to later.
Writing – Continue with this blog and do some fiction writing for myself (I'd rather on private projects to work on my skills than show anyone at the moment)
Photography/picture editing – Continue to do this, I'll improve by practice.
Closer to God – This is one I want to really work on this year, I need to be better at making time for reading the bible/prayers to start with
Love myself more – Just keep going, this has changed a lot over the last few years, and I'm happy, but mustn't go back now.

So same targets, but different achievements within them. Until next time.