August 2022 Catch Up Thread .

.    Xxxxxxxx

Thanks Court. 
I’m feeling very reflective now. Tomorrow is one year since my operation. It’s strange, I feel I should mark the cancer being pulled  out however I have the scans and bloods and a procedure to endure. 
It’s a very odd feeling. Think really I should forget about all of it. 
Sorry for moaning 

I hope all here are well and enjoying the weather.
If it’s good.

I get the whole celebrate it’s out aspect but I also feel really sorry for people as it’s also a memory of a really difficult episode in your life .

Sometimes we would wait a wee bit and do something enjoyable but not necessarily on the day . You are still going through some aspects in many regards and it’s not until the scans started pushing out that mum was able to enjoy more normality . Sometimes it felt it was living a good life between scans . But it did stop , it did get better and did not hold such a tight grip on her .

However you have come a long way and took a very difficult situation and used it to share and lessen the burden for others starting out . I think that’s quite incredible of people . So you should celebrate , not so much the removal but what you did in spite of it . 

That’s a hero in my books ,

Court 

Thank you so much Court. I found your words moving and encouraging 

It’s so true I’ve gained so much being part of this group. Sharing my challenges with others that have been through the same has given me an inner strength and my family I am sure have a brighter soul to share their lives with

Im actually tearful.
The community Champions are my Hero’s. 
Take Care everyone here

I have trouble enough keeping up with all the posts let along replying to sooo many as court and Karen do !  All the Champions are so dedicated. 

I only ever read on my phone and then I have to log in every time to reply to a post. I should find a way to remain logged in but it always kicks me off ! 

I’ll be hitting a few milestones in the coming months so I’ll be watching you Artsie !!  Meal and cinema with hubby after this Fridays consult with original surgeon ( since I already know the bowel and abdo results )… she better not throw in a curveball. Had enough of those this week !! Bloody Moderna !!! 
xx 

Thanks Park2170

I get logged out  too I think it’s security but I keep it on my bookmarks so I don’t have to search. 
I really hope that there’s no curveballs for us both. Enjoy the movie and meal sounds a great way to start August 

Hi everyone

My brother saw his oncologist in person for the first time since his stage 4 diagnosis last September. It wasn’t great news. His latest scan showed that the previously shrinking lymph nodes are now increasing in size. Not what we were expecting at all as he has been responding well to treatment. The oncologist says he’s not overly concerned as he can’t be sure if this is disease progression or the result of some interruptions in his treatment. He has stopped panitumubab as his skin has been awful. He has reassured him that whatever benefit that was going to give him was in the early stages of his treatment, and it’s now causing more harm than good. The interruptions in his treatment happened after his last scan so I am very much afraid that this is disease progression. He is to continue on his current capiri therapy till October then have another scan. He will take it from there if his disease is no longer responding to the current treatment. Paul is devastated about this news, and I just don’t know what to do to help.

oh and to add insult to injury to oncologist said he didn’t always comply with treatment. Oh my god he got a piece of my mind. Yes he’s a pain in the behind sometimes but I wasn’t having him say that.

sorry for the rant guys x

Glad it did . I meant them . You are great at encouraging others .

Court x 

I use my phone too Parky2170 that’s why there are so many typos . I think my phone has bookmarked it itself ! I have no memory of doing it but then my husband might have done it for me .

I just don’t have time for the iPad and can access my phone when I am waiting on my mother , which is often now ?
The forum just could not run without the people who are able to stay and share . They have the experience and the wisdom . It’s so important to get the support around people the first few weeks of a diagnosis. But then I notice once it’s over it’s another time people need a bit more direction .

We got some sunshine today ! Which is a relief as it was starting to look like Autumn here and I am just not ready yet !

Mum has been injured for a few weeks and I will be honest she has been harder to rehabilitate this time but today she is coming back out and it will be lovely for her as the sun is here too .

Take care everyone . I am heading out first thing for a coffee before the caring duties start !. You got to make it work !! 
Court 

Oh Lozberry Your brother has had a tough time and credit to him he has stuck with the treatment plan . Chemotherapy is such a tough treatment. We have to keep that at the front of our minds and he has had his share of tough times on it .

It is so disappointing to hear . Although his treatment was interrupted it could very well be that his nodes did get bigger but could actually have been bigger that this scan and on the way back down . That’s possibly why his oncologist is not too concerned at this point . Any time off chemotherapy my mum’s cancer grew . She did not stay stable , so I could see how it’s a bit of an unknown . She also mounted a response to using the exact same chemotherapy . Hopefully the next scan will show some improvement.

Do you track his CEA numbers . You might get a bit of feel from them how this is going ?

I found it to be another tool for back up purposes .

You are doing so well supporting him . I know these scans are painful for all of you . I had a clinic myself this week ( all good) but twice the called a lady with the same name as my mum and I jumped . It has a profound effect on us in different ways .

Always here for a chat ,

Court