[PatGParticipant]

Good morning everyone. After nearly a month now I hope to get a diagnosis next week, but oh my goodness, how many tests are there? Problem being that I am attending 2 Leicestershire hospitals (kidney and haemo)and I seem to be attending a hospital every other day. I just wish that they could have taken me in for a few days and got all the tests out the way in one go. (Sheesh – that sounds really selfish – sorry). I also feel really guilty (I am not safe to drive very far at the moment as my head is filled with all the things that go through your mind during this time) as my very good friend is taking me back and forwards to the hospital appointments. She is also my line manager at work and I feel doubly guilty that she is having to pick up stuff I am not able to do at the moment, never mind taking time out to get me back and forwards to hospitals! My partner is working some distance away at the moment so it would mean a day off and losing a day's pay if he took me for what in some cases has been a ½ hour appointment. I think I am at the stage now that I really don't care what the diagnosis is – just that there is one! I am truly hoping that I can come back on here on Tuesday and say OK – it's this and they are going to do that, then at least I can come out of this horrible limbo-land and start fighting. All my very best wishes go to everyone here on their individual journey. xx

[mhnevillParticipant]

Dear Pat

We all know whgat a horrible time it is waiting for diagnosis and, unfortunately, with Myeloma, it seems to go on and on!

Sorry you have had to join our group, but hope you find as much support from it as we all do. It is true, you do have to rely on your friends at this time. Aren't we lucky to have good friends and colleagues who are there for us.

All best wishes and welcome.

Mavis

[MicheleParticipant]

Hello Pat

I think I was very fortunate to have my MM diagnosis made very quickly owing to my brilliant doctor. I'd had 2 bloodtests done with a 5 week interval between the 2 looking for something else. When she saw the 2nd result (and a bence jones urine test that she'd ordered too) she immediately booked me in to see my specialist and 48 hours later I was having a bone-marrow biopsy and x-rays!

I was diagnosed within a week. They seemed to know immediately what was wrong.

Treatment started the next day, so as you can imagine, my whole life was turned upside down in a very short space of time. :-S

Let us know how you get on……..

Michele x

[BenzParticipant]

Michele,

Heartening to hear start of treatment so quickly. Was that your NHS GP who responded so quickly? That sort of response time to see specialist is fantastic.

Pat,

Hope you get to a finish or start point very soon. Best of luck.

Scott

[PatGParticipant]

That's really great Michelle. My NHS GP was great in spotting it from the blood tests I had for something else and although she referred me on a 2 week cancer referal, by the time the hospital contacted me within the 2 weeks, it was another 2 weeks before I saw a specialist who ordered all the tests. So far I have had ECG, kidney scan, kidney biopsy, skeletal survey, bone marrow biopsy, 24hr urine and still have to have an MRI and an abdo ultrasound, and numerous blood tests of course. I think the problem is that they are not sure it is Myeloma and think it could be Amyloidosis. My kidneys are certainly affected and are at 50% efficiency at the moment. The tests just seem to be so spread out, but at least it is getting towards the end now. I suppose the kidney complication is not helping as that involves me attending a different hospital.The notes seem to travel from one hospital to the other which makes me wonder why they do not make use of scanned documents and electronic transmission? Still, as I said earlier, I am close to getting a diagnosis now and at least then I will know what I am facing. I really do not like this in between time though. Staying positive is really hard and I feel that I have receeded into a little no-mans land where things are washing over me somewhat. Otherwise I think I would stress too much and I am sure I will need all my energies to fight whatever it is.
Thank you everyone for caring enough to share your experiences with me. I truly hope I can do the same for others. xx

[MicheleParticipant]

Nearly there then Pat.
You do seem to be having lots of tests done. No wonder you're a bit fed up!

But, look at it another way….they're being very thorough and at the end of the day if it helps them pinpoint what's wrong with you it can only be a good thing.

🙂

[PatGParticipant]

Asolutely! That's just what I was telling my other half when the MRI appt. came through this morning. He is getting all worked up about it, but that's pointless and such wasted energy. The more information they have, the better they will know how and what to treat I say. But yes, I am a bit fed up with all the tests and secretly a little bit scared. Roll on next week.

[Author]

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