Thursday, 14 July 2011

One step forward...?

Thank you so much for your comments on my last post. I've been such a bad blogger recently that I'm amazed anyone is still reading, and Sonja's comment in particular really reassured me.

I had another chat with the lovely consultant on Tuesday, and he finally gave me an opinion and said that given the size and position of the polyp, he was 60-70% in favour of continuing with the cycle. He said he personally didn't think the polyp was very significant, but that he had to give us information on all the latest research and let us make our own decision.

We agreed that I would start taking oestradiol valerate that evening, and they would pay close attention to looking out for the polyp when I had a lining scan 10 days later.

The next step was to organise my intralipids infusion, which they want me to have done within a week of starting the oestradiol. That was when it all got a bit frustrating again.

I suppose I was spoilt at XXXX clinic, where they do everything themselves - drug provision, hysteroscopy, IVIg, and anything else they consider necessary during your treatment. The decision about whether to have a hysteroscopy was made harder by the fact that the new clinic doesn't do them, XXXX clinic couldn't do it for me, and I would have had to shop around for somewhere, get a referral, and then probably join a waiting list.

The new clinic also doesn't do its own intralipid infusions. In one way, that's nice - because they use a company that can set up drips in patients' homes, all I needed to do was arrange for a nurse to come to my house and then I could have my intralipids in the comfort of my own home, while getting on with some work (which, by the way, is really picking up now and has been very busy over the last month).

But the way they did it this week was for the clinic to ring the homecare company and set up an appointment - without asking me when I was available. I then had a call from the clinic saying that it was going to be done on Friday morning.

Well, as it happens, I have a stand at an event tomorrow which I hope will lead to some more work for me. The stand was offered to me free of charge as a thank you for some other stuff I've done for the organisation concerned. Not only can I not afford to miss out on the opportunity to advertise my business, which is still in its first year in a highly competitive market, but I also can't let these people down at the last minute.

I told the nurse at the clinic that there was no way I could do Friday morning, and she told me to call the homecare company direct. The woman I spoke to said there was no other time they could do for me within the one week period, and I was then shuffled into a game of telephone tag with these two women. It culminated in me being told not to start taking the oestradiol on Tuesday after all. The new instruction was to start it this Saturday, and someone from the homecare company would ring me to arrange a date for the intralipids.

I got the call yesterday (rather inconveniently, while I was out on a job). My intralipids infusion is now booked for... Monday. Which by my reckoning is within a week of this Tuesday - so why didn't they offer it to me initially when I said I couldn't do Friday?

I then have a scan the following Monday at the satellite clinic, and depending on what it shows, they may want me to go up to the main clinic again so they can rescan for themselves and see what the polyp is doing.

I was a bit irritated by the further delay in starting the oestradiol - I'll have been on buserilin for six weeks now, and the night sweats and hot flushes are beginning to get more than a little bit boring.

But then there was a new development last night. If I wasn't on buserilin, AF would be due round about now - and sure enough, last night I started bleeding. This is odd, because the scan on Monday showed that my lining was pretty thin. But the consultant did suggest that if I came off the buserilin and had a bleed, the polyp might come away on its own.

So is all this waiting around going to result in the polyp disappearing of its own accord? And is it normal to have a second bleed when you're on buserilin? All intriguing questions, and I'll be on the phone to the clinic again later today.

I just hope the start of the oestradiol isn't going to be pushed back beyond this Saturday...

1 comment:

  1. Geez, I would be tearing my hair out - I so admire your calm tone, even if you're not necessarily feeling that calm! Praying for the polyp to come away, and for there to be no further delays in the process, and of course praying hard for an extremely favourable outcome!! And sending huge love and hugs, as always XXXXXXXXXX