Awake and up all night

When I was in recovery from surgery, others who had been through it told me that recovery wasn’t linear and to expect setbacks at times and just go with it.

I learned to do that…some days were harder than others but those friends told me to focus on every single small win. One percent improvement is another step forward, and a positive thing, and they told me not to focus on the negative things…just say that’s the day done and tomorrow will be better.

Onward and upward is the way you’re going!

Sarah xx

Hi Sarah, I had my rheumatology appointment earlier and parked on Thorne Road no bother, and amazingly despite being 20 mins early, saw the consultant straight away, the other patients looked really happy for me lol, and he couldn't have been more helpful, so should start my IV Bisphosphonates soon...I wasi n and out so quick, I could still get to my hospice in time. It's easy to say my friend, but try not to let things like parking tickets get to you, in the grand scheme of things there not important, especially as you know your in the right, and it will be resolved soon enough in your favour. The courses have been a godsend, but  my dysphagia and CRCC, aren't helping, so hopefully we will find some pain relief I "my heart", can tolerate, or it's surgery, not something I ever wanted to do. I read about your catch up with friends, sounded wonderful, and was intrigued that you too research your Dr's, as do I, and can never understand why anyone wouldn't. I've sent you a PM, I  hope it's useful, but I will have everything crossed for you for Monday. We're on our way to the Lakes and I will be popping up to Glasgow for a day as well. XX

That’s a great appointment you had Eddie, and I’m so glad your consultant was helpful. I hope there’s something to be done other than surgery as I know that would be very difficult for you.

I’ve had some wonderful staff at DRI, especially in the stroke ward-they were all true angels in there. My consultant was also excellent and very thorough.

I research any new consultant or doctor I’m going to see. I want to know in advance how experienced they are, if they’ve had good patient reviews and I also like it if they have a kind, smiling face in any photographs!

Have a lovely little trip away Eddie-i haven’t been to the lakes for years but what a beautiful part of the country. Nice weather for driving today. Glasgow’s a great city-I probably prefer it to Edinburgh-and give Annette a little wave if you’re passing! 

Sarah xx

Thanks Sarah, I  hope there's something for me as well though coming off  alendronic Acid I feel a little better and my GI tract  seems to have settled.

You made me smile there my friend, looking for a nice smile when researching new doctors and consultants, not at the top of my list, but I always ask my GP, who they would see.

The Lakes have always been a family favourite, though no little ones today, two girls and me, and I'm sure I can do better than wave at Annette in Glasgow, which is my preference over Edinburgh.

love Eddie and family xx 

Update on the parking ticket saga Eddie. Appeal rejected. All the disabled spaces were taken and it was pouring rain. So we parked in a normal space, displaying the badge. Council told us today there is something on a sign somewhere saying that if there are no disabled spaces and you park in a normal bay, you have to pay. I never went over to the parking meter as the rain was so heavy, I was soaked, and I don’t like the electric chair getting wet in case it knackers the controls. So that’s the car park behind the Savoy. That’s three visits in 3 years to towns in our area and tickets every time. The only time we don’t get ticketed is twice monthly trips to the supermarket! No wonder our towns down here are dying.

I hope you’re feeling ok while you’re away-it’s much nicer if you’re feeling well enough to enjoy it.

Sarah xx

Well that sounds a little rotten my friend, and discriminatory, if it was me Sarah I'd  pay up, move on, and forget about it, there is/used to be a disabled parking badge which allowed you to park for free in many more places than the blue badge does, maybe it's worth looking into.

It's heartbreaking what their doing to our towns, our lot seem to be doing everything they can to ruin ours, we've gone from a tourist attraction to a no go zone.

I'm ok my friend, tired, but that's the meds, so have to put up with that, but we're getting on top of the anaemia, and hopefully the GI issues and haemorrhaging, I'm looking forward to a little pampering and being with my girls.

love Eddie and family xx 

Yep-we will pay online and be mindful in the future. No point in trying to fight it, so lesson learned and move on!

A little bit of pampering would be lovely for you and give you a boost I’m sure. I’ll give you an extra hug to send you on your way.

Sarah xx

Wise words my friend, and it might be quite a bit of pampering as it's forecast non stop rain,  ,  to you both.

love Eddie and family xx 

Hi Sarah, 7 years fantastic. I think the day we got our diagnosis will be clear in our memories for all time.

You mentioned about seeing your GP about a review of your pain meds. Can I ask please, do you find codeine based meds work better than paracetamol based meds? Were you initially on paracetamol?

Hope all is well with you!

Hi Annette

For me, codeine based meds are definitely the best. After my surgery in 2020 when my pain pump was taken away I was only offered paracetamol in hospital, but could have oramorph on request- thought it was crazy to be only getting paracetamol after such a major operation! I got far better pain relief meds when I was discharged after having my gallbladder removed and the main one was oxycodone. I was given paracetamol  and codeine along with it but didn’t need much or for long as I didn’t have much pain with that op.

Now, with this pain, I’m on 2 x 500 mg paracetamol 4 times a day as the base med, with 15mg of codeine 4 times a day added to that. I can increase my codeine each day when the pain is bad and I know the codeine is the one which helps most as I can feel the difference when I take it and get some relief for a while. I’m on propranolol too, which helps keep my anxiety on an even keel, which helps with my sleep. Before I saw the gp I never used to bother taking paracetamol for my pain as I didn’t think it helped but I wasn’t taking it regularly at all, and I never felt it did much good-likely because I wasn’t taking it regularly.

They always tell you to watch for constipation with codeine but it’s never been an issue for me with having a colostomy-it actually makes the output from that much easier! The only issue I have is the codeine tablets are tiny and easy to drop on the floor, whereas the paracetamol are big! I was concerned about taking so much paracetamol for so long, but the gp assures me it’s fine. It keeps the levels in my body up on a more constant level, but for me codeine is best. I wish he’d give me oxycodone which I’m sure would really help but doubt there’d be any chance of that! Might be a bit spaced out….

Sarah xx