Recently diagnosed

Hi Ceejyb458c4 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Sorry, meant to reply yesterday when I saw your post, but I currently have the plague it sounds like you're a fair way in. Time "wasting" in the beginning is, in my experience, pretty normal what with gp appointments, scans etc. My initial diagnosis took about the same and that was 25 years ago. Hand on heart, once your radiotherapy is done, you're on the road back to normality. The hormonal ups and downs, the fatigue it all passes. I know it's a huge shock, upheaval to you, work family etc but there is a light at the end of the tunnel, and the tunnel is shorter than you think. 

Heya  

I'm newly diagnosed aswell after having left lobe removed, everything does feel so slow, this all started mid July. 

that statically the next appointment I have will be in my favour and come back clear and yeah worried about nothing

I had  the left lobe removed and there was 45mm hurtle cell angio I was told on the 23rd October of the cancer diagnosis, I had a CT scan to see if it had gone elsewhere which was the longest week and a half of my life I was so sick with worry and after talking to Macmillan I phoned the ent department and the nurses where great and got my results it was clear and told me that day then letter turmed up a week after our conversation, which is crazy to me that the information was known and not told I was so ill with worry.

I am set to have a complete thyroidectomy set for begingng of Dec.

, I've reached out to Macmillan on the phone to talk which was very helpful especially the nurses that went through information and they signposted me to local groups and councilling peoples

It does feel like a huge shock this stuff happens to ther people the statics tell me that is going to be okay and each appointment proves me wrong.

But  I wanted to say that im sorry and this is  pretty shitty situation to be in and I feel the difficulties it's extremely overwhelming, I'm glad I reached out to Macmillan on the phone it helped ground me a little, and I have a 5 year old so one task at a time and he does pull me into the present and what I can do in the now and later can wait for a bit, not saying that's the right way or you should do this  but it's what I'm doing and that what I'm taking from things I'm reading and hearing is to be kind to yourself  xx (wow I was only going to say hello I rambled a bit, a lot sorry if it doesn't make much sense with all my jumbled thoughts, ) 

When I had it the first time my daughter was 5. Staying away after radiotherapy was the worst bit. But she's married now and doesn't even remember it. So, hopefully you will be back to normal very quickly. Good luck and everything x

Reading this has made me feel so much better knowing it is not as bad as I think and things will go back to normal. Thank you so very much!! I hope you are feeling better

Oh I’m so sorry! Mine all started in May, so I know what you mean about the waiting - it’s awful. Our timelines are very similar. I am waiting for confirmation as they are trying to squeeze me in, but it looks like I will be going in to have the left side removed on 1 December. They were looking at mid December, but we are flying to South Africa on 18 December. I haven’t seen my mom and sister for 6 years so desperately want to go. I an hoping to get confirmation tomorrow from the hospital.

My son is 11 and it is difficult, so I can only imagine what it is like with a 5 year old. What I am learning though is that they are more resilient than we think. It’s great that he pulls you into the present. I am finding it is so easy to go down a black hole.

It sounds like you are a brave strong person and just know that you have got this!! And don’t be sorry for rambling!!! It is great that we can connect with people who understand what we are going through and get things off our chest!

 I really hope they get you in so you can see your mama and sister x

Very wise words, and connection is definitely a positive and something to hold on to so when the black hole was is swirling, that's the time to reach out. 

I don't feel very strong or brave but it feels really lovely someone saying it xxx 

Have you heard of the Osbourne trust? If not  they are there to help support children during a parents cancer treatment my support worker from the hospital was talking about them and is making a referral for me, it seems it needs to be someone who is part of your treatment,  may help you and your son navigate this moment in your lives  x

I am actually going in next Wednesday for surgery, so plenty of time to recover.

No I haven’t heard of Osbourne Trust. Thank you so much for letting me know. I wonder if the specialist thyroid cancer nurse I spoke with would be able to refer me. I am going to ask her. Thanks again