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How I talked to my treatment team about wanting to try this

Started 10 February 2025 · 20 replies · 222 hearts · read 2.2k times

OsricSalisbury, UK · 10 February 2025
1.4 years ago

A question rather than an update: How I talked to my treatment team about wanting to try this

I have been sitting on this for a month.

Here is where I am. The medication side has been more or less as described, and the part nobody prepared me for is everything around it: what to say to people, how to plan a week, and how to tell the difference between a thing to endure and a thing to raise.

The thing that has surprised me most is how much of this is about other people rather than about me.

I will report back either way, because I have been helped by other people's follow-ups more than by their questions.

74

GrizelKirkcaldy, UK
#1

Different experience here, for balance. Mine did not improve and in the end I stopped, and that was the right call for me. Both outcomes exist.

11me too 9

PádraigGalway, IE
#2

The phrase that unlocked my appointment was asking what specifically she wanted me to watch for. It moved us from reassurance to a plan in about thirty seconds.

13

RenataKraków, PL
#3

No advice, just recognition. That sounds exhausting and I am sorry you are in it.

10

JonahFacilitatorCork, Ireland
#4

Reading the reply above, I recognised more of that than I expected to.

Noticing out loud that this conversation has drifted into comparison. That happens without anyone intending it and it does not help anyone. Let us come back to the person who asked.

27

GwionBangor, UK
#5

Can I gently push back on one thing? Not the substance, just the framing — you have written twice that you should be coping better. Who told you that?

11

QuinGuildford, UK
#6

Reading the reply above, I recognised more of that than I expected to.

My pharmacist was more use than anyone. Ten minutes at the counter, no appointment, no charge.

7me too 4

OllieCardiff, UK
#7

the reply above — yes, and the bit that took me longest to accept was the next part.

I am about four months behind you and I have been dreading exactly this, so thank you for writing it down before I got there.

9

SadieSalford, UK
#8

Yes to the burping. It is real, it is unbeautiful, and it does settle.

9

NanNeath, UK
#9

It got worse before it got better for me, which I wish someone had said. About ten days of worse.

10

RunaAarhus, DK
#10

Reading the reply above, I recognised more of that than I expected to.

For what it is worth, the trial data on this is thinner than the confidence of the internet would suggest. Worth knowing when you read the posts.

6

SableCape Town, ZA
#11

I am the person who had the frightening version of this. I went in, it was investigated, and it was not what anyone feared. Going in is the whole of my advice.

13

BramwellNottingham, UK
#12

the reply above said something I want to sit with for a second.

Coming back to this a fortnight later to say it settled. Leaving the update because I hate reading threads that stop.

12

OrlaithDonegal, IE
#13

Practical, boring answer: write the three questions down before you go in. I have never once remembered them otherwise.

12

OsricSalisbury, UK
#14

I did exactly the same and felt terrible about it. You have not done anything wrong.

10

GrizelKirkcaldy, UK
#15

I asked my nurse the same question and she said something I have repeated ever since: that the aim is to keep you on treatment, not to get you up the schedule.

8

PádraigGalway, IE
#16

Please do not read the comments under news articles about this. I lost a fortnight to that.

13

RenataKraków, PL
#17

What the reply above described happened to me too, in a slightly different order.

What helped was lowering my own expectations of the week rather than trying to hold the week together.

4

BroganCumbernauld, UK
#18

My experience was very boring, which I offer as data. Some of us just get a dull time of it.

10me too 1

JonahFacilitatorCork, Ireland
#19

Building on what the reply above wrote rather than answering the original question.

Two things, both boring. First, none of us can tell you what to take. Second, the conversation you want to have is with your prescriber, and we can help you write it down.

14

QuinGuildford, UK
#20

Yes. All of this. I had the same in my third month and I remember thinking there was something specifically wrong with me, which there was not.

13me too 4