CT results

Hi Maggs, this is indeed great news and for some folks this can be seen as a chronic disease.

Now to keep on living life to the full and do your best not to focus your eyes on the what if’s ((hugs))

Good news indeed keep positive

Really is good to hear positive things makes a great start to the new year

I know this was such a relief, but had some thoughts while laying awake. Hope ok to ask questions here? Like, what happens at the 3 month check, will I have this anxiety of results every time I have a check up? Might be selfish to be concerned and having these thoughts when others have to go through treatment! I’ve not had a proper talk with my consultant so don’t know what to expect.

Maggs

Hi Maggs, yes its fine to ask questions that's all part of the support and sharing experiences, at the check up you will probably have bloods done, a physical examination to check for raised nodes and a chat about how you are and that is it basically. If any concerns are raised or they or you think the disease is progressing then it would probably be appropriate to have a scan, but that will be discussed with you as they try not to scan to often and given your type of disease thats normally ok. 

As for results anxiety, yes no matter how hard you try a little but of what if kicks in, though with time it does get better, because if you feel ok you can tell yourself your fine so everything will be fine, I found it worked most of the time even when they thought I may have relapsed.

John  

Good morning Maggs, great advise from John and yes, this is your safe place to unload your thoughts.

Yes you will have the pre check/results anxiety, you are not supper woman so it will happen, we all have them to some degree and we all deal with them in different ways.

In 1999, when my journey started I was having 4 monthly clinics, bloods and a CT every year. I have to say that I quickly came to realise that all the stress in the world would not make any difference to what my consultant said, in fact I was making myself ill in the early days because of the stress.

One of my other consultants (Respiratory) is a good friend and he advised me to make a conscious decision to control what I could control and that was the overthinking, fretting and worry. He advised to take each appointment as it came and when things were not so bright just set my mind to deal with it and get through and out the other end. But when you had a positive appointment park all the thoughts and get on with life.

He also said that in 'his opinion' a positive - can do attitude adds 20% to the effectiveness of any treatment and recovery.

You are doing great, just remember to unpack into your note book and not have thoughts buzzing around in your head and we are always around to listen ((hugs))

Hi,

Thats great news and a really good start to 2020

Its a great group on here - always ready to help and answer questions based on their own experiences - we have all shared highs and lows together and had some amazing support from people we don’t know and will probably never know. 

Nicky 

3 Month check will be bloods taken and they will weigh you and have a chat with consultant.

What stage are you?

If they are happy you will stay on watch and worry.

First two years are a guide if nothing changes much you are fine to carry on watching and waiting.

They will probably extend the gap between appointments to 6 months or more.

Mine went to 12 months.

Now I am on 9-month appointments because 12 months felt like cast adrift.

Good luck.

Steve.

Hi Maggs

ive just seen my consultant today. I was weighed, asked about how well I was feeling, did I have any night sweats or fatigue. I had bloods taken.

i have been on watch and wait for almost two years. To start with the appointments were three monthly but I asked to be moved to six monthly for my anxiety levels!

Hi Steve, it makes me feel so much better about my condition knowing that you and others have been on watch and wait for a long time!

i am stage 3, I have swollen lymph nodes both sides and above and below diaphragm. Sometimes have night sweats, do have fatigue and shortness of breath, used to put it down to psoriatic arthritis, diagnosed at 27 with that. So used to getting on with life and pushing boundaries, this will be no different.

so many responses that have definitely put me more at ease with the (harsh) fact, that I do have cancer, but, it can be lived with, it will be a part of me from now on, but will not be me

 ps my name is Alli, feel that I can be 100% Alli and not hide behind the username

Alli- hi