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Private Forums

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Anonymous
Private Forums

Hi Everyone

I just wanted to post  a reminder about the private forum we have available-

Living with advanced cervical cancer- This forum is for women who are living with or beyond an advanced stage cervical cancer (stage 4). It provides the chance to speak to other women in a similar situation that have perhaps gone through more radical treatments or trial drugs. This group of women has often told us throughout the years that they would welcome a place to be able to help each other and talk about the things that matter that can be difficult to talk about in more public arenas. So if you're a woman going through some of the complexities of advanced stage cervical cancer, please do get in touch. And again if you are a user of this forum and have feedback about how this section of the forum could be improved please do let us know, my email address is [email protected] or you can PM me. 

How to use the forums? These two forums are private and therefore access needs to be given in order to use them or read posts. You will need to complete a brief registration form so that we can help keep these spaces safe and supportive for those that need them the most. The registration form and a bit more info about the forums can be found herehttp://www.jostrust.org.uk/join-private-forum-categories

We look forward to hearing from you.

Best wishes

Fran 

 

Tivoli
Tivoli's picture

Can I just say?

I completely understand the importance of these Private Forums and the need to go off into a quiet area and talk amongst yourselves.
No problem with that at all! :-)

I also fully accept that for some of you, having reached that point, you have no reason, desire nor interest in dabbling your toes in the kiddie pool. I feel much the same, having reached the "Post Treatment" forum, that's where I choose to spend most of my time, though I will occasionally look at "Treatment" or "Newly Diagnosed" I will very rarely travel as far back as "Colposcopy".

But that's OK, because people in the earlier forums are allowed to sit in and listen with the later forums, even if what we have to say might sound a bit scary at times. What bothers me a bit about the private forums is that once you have passed through that door, most of you never come back to say "Hi!" to the rest of us.

You might be having bundles of fun in there with everyone else who has qualified, but those of us on the outside just don't know. There you were last month, in our company, but a little scared, and now you've vanished!

Please! If you do qualify for the Private Forums, could you just pop back and say Hi to the rest of us once in a while so we know you're doing OK?
We don't want to hound you with PMs!
Thanks!
Be lucky! :-)
xxxxx
Tivoli

Petesdragon
Petesdragon's picture

There are very few of us active in the advanced forum..I think most  do pop back. However it can sometimes be very difficult to deal with issues outside of the advanced forum.. Many of the questions and worries can seem very trivial when you are facing far worse yourself or trying to support others that are. I got irritated the other day about something that was posted and I just thought "you don't know you are born". It was easier then to walk away for a bit. So I'm sure the advanced pop back when they feel emotionally able to.

Karen 

 

 

    • Stage 3 Glassy cell adenocarcinoma  1997 (negative smear tests).

Treated with Wertheim's hysterectomy, chemorads.

October 2017- new squamous cell vaginal tumour diagnosed,  probably radiation-induced. 

Total pelvic exenteration on 19th December 2017. 

March 18 Post-op CT scan shows healthy kidneys and successful urostomy and colostomy. No evidence of recurrence. Discharged by urology and colorectal surgeons. 2 down and 2 to go!

June 2018. CT scan shows 2 new pulmonary nodules.  

CT Scan Jan 2019. Nodules gone. No evidence of disease. 

Designerflo
Designerflo's picture

Hi all, 

I am so grateful for the private Advanced forum and all my sister's that are there to support me, I couldn't get through each day without them & I agree with Karen, some days are just too hard emotionally to keep ourselves buoyed up without trying to help others. 

I do pop back to post-treatment forum but often instead of commenting just use the heart function as a way of keeping in touch.

The issue I have with re-visiting & commenting is how can we support without putting a downer on the people posting?? I can relate to alot of people on the post-treatment thread, stage 2b ect & now here I am in the advanced & terminal. I often read people saying to others this is an easy cured, slow growing cancer (which mine is the most aggressive) & short of me commenting my experience, stage 2b, NO lymph nodes involvement and from stage 2b to terminal in 12months & frightening them all I do not see how I can make a positive impact. I do not think people should say it's easily cured, slow growing or anything along those lines as we all know there are exceptions to the rule & these need to be taken into account. 

I will continue to visit the forums & if I can impact someone's day in a positive way then I will comment otherwise hearts will be given. 

Flo xx

Designerflo

 

Oct 23rd Hysterectomy   Nov 25th Staged 2b Poorly Differentiated.

Jan 4th 2016 20 Radiotherapy, 4 Chemo. Feb 2nd Cycle of  10 Radiation & 2 Chemo started. 

Results July- NED!! Check up 9th Sept next MRI Nov 2016

Nov 10th 2016-Scar tissue in tumour site.  Area of concern on Liver, PET scan Wed 16th Nov.

25th Nov 2016 - Year Anniversary of initial diagnosis- 2 tumours in Liver, 1 tumour near stomach. Re-staged 4b incurable. Chemo starts 1st Dec Carbo/Taxol/ Avastin. 

Immunotherapy trial January 2018, 2 cycles but unsuccessful. Carbo/Taxol 6 cycles March 2018.

 

michellek123
michellek123's picture

Hi 

I'm from the advanced side aswell 

just wanted to say that I often have a look at the post treatment forum and can tell by some people's post  who will be joining us but would never say to that person it's coming back 

the ladies on the post and treatment forums all help themselves along and are doing a wonderfull job 

we grow very close on the advance side it's a very heartbreaking side to be on as flo says we are all sisters and it's so hard for us when we lose a sister to this battle 

the newbies that come over have a very gruelling treatment ahead of them and I'm sure like the few older sisters that are left will pop back on after they have finished what ever treatment they have 

I think that the ladies on the post treatment and treatment forums need positivity i also agree with Karen sometimes when I've visited and read some things I have to bite my tongue and not post something and I'm a strong positive person 

and you do a splendid job Tivoli on that side 

Maybe there could be a forum for the longtimers to come on and pop a quick post to say hey I'm still here that everyone can see for the positivity but no one can ask questions on that way no one will offend anyone and everybody can see that treatment does work 

there's a thought for the admin of Jo's 

love michelle xx 

 

Ll

Mmouse123

Hi Michelle 123

I was just reading some of these post and seen that u can tell by peoples post if their cancer is coming back can i ask how u can tell. I worry all the time and would like to know what to look for. Thank you.

:-)

Jan 2017-1b1 squamous cell

February 2017-radical hysterectomy path report showed parametrium spread and a parametrium  lymph node, restaged to 2b

March to May 2017- 5 chemo and 25 radiation

CD84

I just wanted to say hi Tivoli! 

I do pop back now and again to the other forums but often everyone’s questions have been answered brilliantly. I do poke my nose in if it’s somerhing I think I can help with though :) I don’t want to scare anyone with my story particularly either. 

MMouse the worry of recurrence is real and there everyday I know. After having a recurrence I‘ve got to say its so important to try your best not to waste time worrying because it won’t change how the future pans out. Easier said than done I know. I’m sure your oncologist has told you what to look out for but don’t bogged down in the worrying. We all need to get on with enjoying life :)

Cara xx

michellek123
michellek123's picture

Hi 

Mmouse 

i totally agree with Cara's advice 

I also put in my post I would never advise anyone it's coming back till the doctors have confirmed this and they join the advanced side 

this is the exact reason why I don't comment on the other forums needs to be positivity all the way you ladies don't need to be worrying about recurrence take everyday as it comes and enjoy 

love Michelle xx 

 

 

 

Meghan Herring

Hi all,

I hope you don't mind me popping in on here. I just wanted to let you know that in the next couple of months we will be releasing a large Support Services Survey to gain everyones feedback on the support services Jo's are running, and the developments you'd like to see. I will put it on the forum when it's released and would love for you to all feedback your wishes for the forum in it. Thanks so much. 

Very best wishes,

Meghan

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Moving forward from a cancer diagnosis