Are there any ladies or groups for stage 4b cervical cancer I could connect to/with?

Hi LeoLeoRising and to everybody else on this helpful site which i have just signed up to today.

I was diagnosed with stage 4b cervical cancer in april 2019 on my birthday (I was 46 not a great birthday)

I have have been through  chemotherapy every 21 days for 6 cycles at my local hospital

A month later i went to clatterbridge in the wirral where i underwent chemo-radiotherapy.

25 rounds of radiotherapy and what was supposed to be 3 rounds of a different chemotherapy which i only managed 2 rounds of due to severe sickness and then followed by 3 rounds of brachytherapy (last one in january 2020 which i read in to far to much and worried my self sick. (i wish i had not read in to it so much because it really was not that bad at all. unneccessary worrying.

All the staff at clatterbridge were so caring and helpful.

Followed by 3 monthly scans.

(Yesterday )7.04.2021 i got the results from my last scan which i had recently and I got the news I was not expecting!

I have no signs of cancer. I never thought this would happen for me because of being staged as 4b.

It has been a long haul and i cannot stop thinking about that good news.

I feel like the world has been lifted from my shoulders and wish i had been more positive about the situation.

sitting around worrying all the time which i know is hard not to is one thing that i do regret and if i could go back now i would not waste my time worrying.

I shall now stay positive for the future.

I wish you all the best LeoLeoRising and stay positive. And everybody else that is going through or been through this.

Lots of love

J xx

Hi  Thank you so much for writing.  Your post made me cry.  It is the most amazing story and news and just lifted me for the day.  I am only just through the second of my six first chemo sessions and finding them very hard indeed and I am inspired by how much you went through to get to where you are now.  Sometimes (many) it feels like I am going through this for nothing and so to see someone actually cured at the end being at Stage IV is just amazing and exacty what we need to hear.  I truly believe many people are cured but the medical profession doesn't really push this fact or even mention it which is so sad and makes the journey so much harder.  Thank you again.  x

Good morning Carla04

I am sorry i made you cry but I want other people like yourself going through this not to worry yourself silly but try to just stay positive throughout and think ahead to your future I look back and really believe i made myself feel so low because of it and made myself believe I did not  have the get up and go to do things and i think if i had not been so negative I defintely would have been doing more things other than sitting around worrying.

I was told at first the only option for me was just chemotherapy but after it was discussed with the MDT after I was responding to the chemotherapy treatment here at home at my local hospital that they would offer me the chemo-radiotherapy and brachytherapy at the clatterbridge centre in the wirral.

I am so glad that i made this decision to go ahead with this because at one point I was thinking about calling it a day.and look now! I really cant believe it. Look for the positives and not the negatives.

Sorry I am going on now but I feel writing this makes me feel so much better aswell and knowing it is inspiring to others :-) 

You certainly are not going through this for nothing and just keep going, Take it one day at a time and stay positive as much as possible. I had days of fatigue and feeling sick but defintely worth it in the end.

I hope you have lots of support aswell as this is very much needed.

I remember starting my first chemotherapy session and thought it would drag on forever but in all honesty after the first couple of sessions i just learned to accept this is helping me and the time flew over and on the last one it was such a relief.

I hope your sessions that you have left go as fast as mine did and get you on the road to recovery.

Good luck Carla04 and if you ever want to message me here or privately please feel free :-)

Lots of love

Jane X

Don't apologise at all Jane.  I was so very pleased for you and just so grateful you wrote.  It lifted the dread from my shoulders for the whole day and I am still clinging to that now.  I think I have reacted much as you did to be honest and I find it very difficult to mix with other people or to find any enjoyment in anything.  I feel like my future has been taken and I am full of fear and dread.  I have been trying to do alternative things as well to help myself as this gives me some control but my oncologist is against it all so that is a battle.  I would love to keep in touch privately but have no idea how to do that as I am new to this site.  Did you do anything else such as change your diet? 

Carla

Carla04 what is it your oncologist is against?

I liked to drink fresh orange juice and drank as much water as i could manage and ate fruit like bananas and oranges. They say to eat three meals a day but sometimes i did not fancy that but then again other days I dont know whether it was just me but i needed as much sweet things like biscuits and chocolate but i am not sure if that was due to the steroids as normally i am a savoury person.

Try not to be full of fear and dread it really is not worth it

Lots of love

Jx

Hi Jane, thanks so much for sharing this, it has made me very happy!  I feel like the chemo cocktail I am on is still working after 7 rounds and as long as it is I am going to keep going!  They have said this is "incurable" but I don't want to believe that and your situation is exactly what I am aiming for!  I am a worrier and I too wish I had not spent weeks and weeks learning about the ins and outs of this disease and what COULD happen, and although I am pleased I have a very good understanding the worry it was causing me was getting me down.  I have minimised research now and am focused on enjoying life as best I can and already I feel better.  Thank you again for your words of encouragement, I'd love to stay in touch if possible?  I was diagnosed with the reocurrance on Sept 11th (9/11!) at the age of 47 so we seem to have lots in common. xx

Hi Carla, its great to connect on here, thank you for joining the conversation.  I am on round 7 of a chemo cocktail and although its hard my aim is to get this thing under control enough so I can have something else front and centre of my mind!  Like enjoying life again!  That's the plan anyway.  I met another lady on line who is stage 4 and been on maintenance Avastin for 4 years with minimum problems.  So great to hear the positive stories x  I dont know how to connect privately at the moment, but when I find out I'd love to connect with you more - perhaps we can champion each other through this, L xx

Hi laura, thankyou for replying to me

I am new here and didnt read in to your full history which i just have.

Just trying to navigate my way around :-)

I really do hope that the treatment works for you and it must be so hard for you and your partner to be both going through this.

Lots of love

Jx

Hi Yes really happy to connect.  Jane sent me a friends request so we need to work out how to do that.  She is my first friend!  I have been feeling so lonely on this journey (although my journey is much newer it appears than everyone else) and it is great to be able to talk to other people.   It is amazing to hear the positive stories and I just don't don't know why the medical teams cannot push this fact more.  No one is going to sue for a little bit of hope!  We all know it is an individual path but positivity is so important and is difficult at times.  I have been reading Radical Remission which is a great book and really inspiring.  It is by a doctor who became interested in remissions that medically they didn't expect and started to investigate them.  There are loads.  Hope to sort out the friends thing soon.  Carla

I am doing a clinical trial privately at Care Oncology Clinic - they are fabulous if anyone else is interested.  Lots of info on their website but basically they are using mainstream drugs that are safe to help kill cancer and stop recurrence and they hope eventually to bring this into mainstream cancer treatment.  In the meantime, they are running the trials and have been for about 7 years I think on all different types of cancer.  It is in line also with How to Starve Cancer book which is about how mainstream drugs and supplements and diet can help.   It all works with chemo and normal treatments not instead of.  

Thank you again for chatting and being my friend on here.  It is wonderful news about your situation and I truly am so very happy for you.

x