(that wig) Suits you Sir....or is that Madam?

Saturday was good, not the best start, as didn't feel great in the morning, but fortunately day got so much better and throughly enjoyed seeing and spending time with neighbours and friends. Thank you everyone ( ditto Steve).

Sunday I fully expected to carry on feeling brighter, better, and without 5litres of fluid to 'lug' about a bit quicker around the house... ( I only have two speeds, as my boys call it "dead man walking" and stop.
 
So you can imagine my disappointment, and frustration when I felt awful, no breath, no energy and weepy. This wasn't in my game plan.

No great improvement as the day progressed... certainly not physically, but at at least as last blog post's show that we did get out on the lanes for a walk, it does make such a difference to get outside in the fresh air every day.

Monday at 8:30am saw me calling Hospice Community Team, I needed to know what I could do to help the breathing, or at least improve it, and generally sort me out!

A few phone calls between hospice/hospital and us saw an appointment hurriedly made at the General with the lovely Dr PS ( you know the one who is always so keen to stick needles in my lungs for a drain?), as hospice felt that they needed to know a bit more of what might be going on.

Leg dressing done, and off we went around 12noon, so fortunate in the not too long a wait, and a chest scan was ordered. The staff in radiology are amazing, helpful and strangely know me on first name terms..

Scan done, back on the ward and Dr PS has a small ultra sound machine so was looking at fluid in the lungs. It doesn't seem to have changed much since the last one two weeks ago, the pleurodesis appears to be doing the trick, however as was pointed out later, that was the fluid.
I'm no scan 'reader', but even I could see the 'plaque or chewing gum or cancer' for want of a better word had been busy.

Moving on.....at least no lung drain, needed, and we had more information, discussed however that  there maybe a possibility that I had a PE ( pulmonary embolism , or blood clot), not such good news. The only way to be sure is by CT scan, and of course that's not without it's own risks.

The plan therefore was to start me on blood thinners, reduce the risk or disperse it hopefully, and head off to hospice for further chats/advice and a new drug regime.

We did take a detour to the harbour en route, needed a sandwich and time out, looking at boats...

 We do love those selfies....

At hospice, further talks on how they could help, it was originally suggested first thing this morning that I spent a few days in there resting, but thought I could be doing that at home, and its 'breathing' I really needed.

Consequently I am now on apixapin (a blood thinner) every day, methadone twice a day (2ml), to help suppress the coughing, pantoprazole twice a day to combat nausea and stomach acid.

I have had to increase the steroids from one tablet 2mg to three tablets, plus take two long acting slow release morphine tablets.  carry on small doses of oramorph (1.5ml) as and when I need it, ditto paracetamol.

It's a plan, and we need to accept and move forward, they did talk about having a 'little needle, cannula I guess) inserted into the top of the arm and a small handbag you carry around...  a morphine pump in other words. I'm not stupid, It may well come to that, but for the minute I'm going to try the oral route and see how I get on.

One of the sticky points, is the small doses of oramorph I have before sleeping is it wears off after a few hours, so at the point of waking, I am often short of breath, coughing and trying very hard not to panic breathe....

Whilst waiting for a prescription we took advantage of the beautiful gardens and hospitality that Clarkson House has to offer..

www.justgiving.com/fundraising/jill-luce1
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As a post script, I have linked in the Just Giving page, as it's less than a week before the crazy mad friend of mine, Sue Willis has her head shaved ... Monday morning 11am at Les Ormes ( Bonitsa's).

It goes without saying that we appreciate the donations we have had so far, ( and continue to receive with amazement) but please do not feel obliged in any way. Not sure if it's really because they are all interested in the shape of Sue's head?.

So many worthwhile charities to support, but we felt staying 'local' (and they have certainly helped me, and probably may well again in the future,) is Jersey Cancer Relief.

A little photo shoot (SC, is no Matt Porteous), and a lovely outside lunch, has a big difference to what could have been a 'sad' day into a jolly happy one... thanks ladies.


Two new trainee nurse for leg dressing duties......

 LOOK, growing hair already, she'll be balder than me!

Home made crocheted matching hats.... made by Bex!

 Yes, I've sewn bobble on now!!

Has to be a welsh one in there somewhere....

 Beanie.... on guinea-pig duty.... it's ok Steph, I was watching her.......