Hello, I hope you are keeping well and enjoying life.

Things have been a bit hectic for me since we got back from our successful trip to London.

T has been sleeping a lot because he is tired all the time now. He wrote to the hospital in Southampton (who have told him he will get his ‘urgent’ heart surgery ‘some time’ in the next year) to ask if they will be monitoring his heart in the meantime. He got a rather abrupt and unfriendly answer to say that no they will not be monitoring him but if he becomes unwell he should report to our local hospital for emergency treatment.

He is losing all confidence in the team at Southampton now. Luckily he is seeing the local Heart Failure Nurse early next week and he finally got an appointment to see his GP the next day.

When he was first told that his only option for surgery was Transapical TAVI, (a very specialised and complex type of keyhole surgery) he was told that he was not ‘optimal’ for the surgery at that time because his Aortic valve was functioning ‘OK’ (apparently 25% performance is deemed OK!?) but if it was left too long there might be too much damage to his heart and then he would be unable to have the surgery. So the fact that they don’t want to monitor him is naturally a bit worrying.

T has been researching other options. He first looked into being transferred to another UK hospital but they all have long waiting lists for NHS patients. Although going private could probably expedite the surgery to a few weeks, the cost in the UK is prohibitive. He’s now considering going abroad for private surgery, which, including return flights for two and accommodation, is about half the price of having the operation done in the UK (still a lot of money though). I have told him he needs to investigate what the insurance cost will be as I’m sure it will be very high with all of his other health problems which all have to be declared. I want to be sure that if he needs a medivac flight to get home one will be available.

Naturally I am very anxious about all of this (the delay, the lack of ‘customer service’ from the team at Southampton, the difficulty of getting care from the NHS – due to years of underfunding from successive governments, etc. etc.) and I am pleased he will be seeing the two local professional people who know him and appear to care about him.

When I’ve managed to find a bit of ‘me time’ I’ve been trying to finish a Junk Journal I started in 2014 as well as making a box to contain it. It’s completely made from junk and rubbish and I’ve filled it with quotes that are meaningful to me (the delightful content). I’ve just got one more page to finish and a few tags to decorate and then I can mark that one as ‘complete’ too. Hopefully I will get it done before the end of the year as I’ve already noted on the box that it was started in 2014 and completed in 2025 🙂 Here is a little glimpse of the inside and the box:

Yesterday we had our very last session of the Arts and Craft group run by CarersIW. It’s a bit sad it has come to an end because it was a lovely group of carers and we all supported each other through difficult times. Often the room was filled with laughter. Yesterday we decorated cardboard gingerbread men for a community Christmas tree.

The group used to be a lot bigger but in recent months the numbers have dwindled and the decision was taken to bring it to an end. Very sad but I think it was the right decision. I have been invited to join another group on a different day. The Self Care Cafe is centred more on the individual and includes things like mindfulness, breathing, meditation, calming music and sometimes there is also a craft element. This week we made ‘natural weaves’. My effort is at the top of this post. The frame is made from driftwood tied together, the warp is made from paper string and the weft includes all sorts of bits and pieces collected from the beach and gardens and some extra bits tied on. It was a really lovely exercise to do and I was quite pleased with the result of mine. Everyone did something different and they were all lovely.

The weather in the UK got colder recently and I remembered some time ago (probably a couple of years) I purchased everything I needed (fabric and mechanisms) to make two Roman Blinds for T’s room. He has 2 large windows in his room one south facing and the other east facing. They already have curtains but the blinds will improve the insulation. I thought making the blinds would be a quick and easy task afterall it just involves sewing straight lines, but it’s turned into a bit of marathon.

Part of the problem is getting into his room, because he sleeps a lot I don’t like to disturb him but I also need daylight for measuring and fitting, there’s a bit of drilling and hammering involved, climbing up and down step ladders and quite a lot of groaning and swearing! Currently it gets dark at about 4pm so my window of opportunity to get the job done is limited! Sometimes he stays in bed until early afternoon! Today I should get the first blind competed and then I am hoping that the second one will be quicker as I now know what I need to do and hopefully won’t make as many mistakes. The blinds have blackout and thermal linings to keep the heat in during the winter and out during the summer. If I ever need more blinds I’ll pay someone else to make them. I’ve realised that now I am a ‘senior’ things that used to be quick and simple take much longer and seem more complicated!

My other exciting news that I will tell you about nearer the time or maybe after the event is that I have signed up for a 5 day Art Retreat in the south of France with my favourite artist next summer. It sold out almost immediately and I was lucky to get a place. I am so excited about this 🙂 ❤

That’s all for now, keep creative friends 🙂
Big love from me
AJ xxxxx ❤❤❤