Mixed Medics Making Up Minds

[GardenPixie]

So, last week I was able to post here that I finally had a diagnosis of PBC, and to be fair, it seems for now that still stands - keep taking the medicine.

However, ever since this started, the doctors had all been hinting and finally saying outright when I told them to stop messing and talk sensibly, that they suspected cancer. The problem was getting a proper diagnosis, none of the tests and scans showing anything they could consider conclusive. Last week I had an EUS and they were convinced nothing cancerous. However, they took biopsies of a couple of local lymph nodes which they thought might be a problem, but probably related to the pancreatitis Id had.

Anyway, this week I finally got a call from a specialist nurse who will be my point of contact from now on, finally!! Only waited 7 weeks for this. However, the news was not all good. Apparently I have caused some debate amongst the MDT lot, there is one lymph node some of them are still not happy about. So, feeling a bit like I'm back on the treadmill I was on before l stepped off for a breather last week. I wasn't totally surprised to be honest, I did feel that the new diagnosis was a huge and strange leap from their initial suspicions of cancer, so the niggle was there in the back of my mind. Anyway, Ive got to have another EUS concentrating specifically on that one node and getting more tissue from it, and they have finally decided I should have a PET scan too - which strikes me as an option they perhaps should have taken sooner, but I guess they are the experts.

I guess Im feeling glad they want to carry on checking every possibility, but also feeling a bit narked that Ive now got at least 3 to 4 more weeks of waiting for test appointments, test results, and the 50-50 chance of a diagnosis I didnt want but will have to deal with anyway at the end of it all. Just as everything was feeling positive because I least I knew what was wrong, it is all back up in the air. If it is cancer, it feels like a lot of time is being wasted.

On the positive side, I'm not going to let any of it drag me down, Im getting on with my gardening, already sowing this years veggie seeds, and enjoying just being outside in the fresh air again. Ive bought some young fruit trees that I will getting in next week when this predicted storm has passed, and even added a couple of roses yesterday, called 'peace' and 'blessings' apparently.

Now, if I can just throw off this flipping stinky cold Ive picked up too, life would be a breeze eh!

[Hidden]

Hi

How are you feeling tonight? The amount of messing about you've had is unbelievable. It seems to be happening more and more. Wishing you the best result, always here for you. Love and hugs Lynne xxxx

[GardenPixie in reply to Hidden]

The crazy thing is Lynne, Im sleeping better than I have done for years. Yes, in part its the inherent tiredness, but my OH can't believe im not awake and worrying every night, but that just isn't me. Yes, I will have the odd night like that, but generally at least I can sleep and I think overall i feel better for it and can feel positive and determined to face and fight whatever is chucked this way. So last night I came upstairs after dinner to sit in bed with my laptop for half an hour, checking in here and a few other bits before doing some reading and...that's the last I remember until about 3am when I woke up cold and clothed on top of the duvet.

Hope your night wasn't too bad xx

[Hidden]

Good aftenoon GardenPixie,

Sorry to hear of your situation. I am sure our lovely forum members will support you.

You can also call the nurse led helpline on 0800 652 7330 Mon-Fri 10 am - 3pm if you wish to chat.

Best wishes,

Trust9

[PoorlyLiver]

Good for you staying positive ... gardening is such therapy even in this weather. Hope you get diagnosis sorted soon .. and hoping it is the least of all possible evils. Seems nothing clear cut given the shillyshallying going on.