Stupid rollercoaster!

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This flipping rollercoaster is rubbish! Had my '3rd round, check it's working' scan results on Monday. Immunotherapy has stabilised the disease...yaaaaay! 

However, slight inflammation of the sigmoid section of my colon (I've learnt so much stuff I never wanted to know about in the past 8 months) means a break in treatment.

Treatment has been signed off now, so I can no longer attend the Royal Marsden...bum! Back to the hospital that guessed a measly 18 months left for me...4 bloody months ago!

Feels like I got a lovely step forward and now too many back! I hate this ride.

Fingers crossed those sigmoid issue does not result in the  only treatment that's worked being stopped. 

Arrrrggghhhh! 

  • Hi JB 2022

    I've just read your profile. I'm very sorry that you are in this horrendous situation. My story is very similar. You can read my profile. 

    I understand totally, your pain,  worry, anger, despair and all of the other feelings that overtake and occupy all thinking.

    Just reading your post and was interested in what you said about a problem with your sigmoid colon.

    I don't post other than maybe respond to others now and again.

    I was diagnosed with serous adena carcinoma, an endometrial cancer.  High grade, stage 3a. Had a radical hysterectomy. Then I had 6 months of carboplatin. 9 months later it had spread to my peritoneum.  Told incurable. Had 4 more months of carboplatin followed by 4 and a half months of weekly paclitaxel  chemotherapy. 

    I have recently started a trial...targetted therapy.  Almost immediately,  I was in agony with pain from my sigmoid colon. I'm told it's probably one of my tumours putting pressure on my colon but now I'm wondering if it could be as a result of the treatment. Could you please explain more about your symptoms or what you have been told.

    Don't give up hope! I know it's extremely difficult to stay positive but I'm still here a year after being told there was nothing they could do. I'm praying for a miracle in this new treatment or any other that might come along. 

    Sending you my best wishes. 

    Helen x

    Helen 
  • Hi Helen,

    Isn't this horrible!? I am determined to hang around for waaaaaaay longer than predicted! 

    Symptoms started with diarrhea, only once every few days. I thought it was food related. Some bleeding, but told that was probably hemorrhoids. No internal pain. I ended up having to go to a&e when more blood turned up with diarrhea (first time). Had a CT which detected inflammation of the sigmoid. Now waiting for a camera investigation. We have so much fun, eh?

    I just want to be back on treatment and get some routine set to this stupid 'journey'.

    Thank you for replying...Good to know I'm not alone. This is the loneliest bloody illness!

    Jo

  • Hi  

    Sorry to hear about the break in treatment. Keep on keeping on, hopefully it's only stopped for a short time. Keep in touch and let us know how you're doing.

    A x

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  • Hi Jo

    Yes it's an awful journey...I don't like rollercoasters at the best of times! Smiley

    Hang on to the hope and keep in touch!

    Sending hugs Hugging

    • Helen xx
    Helen 
  • Hi Jo (JB,). You certainly are not alone. There are lots of us here who know exactly how you feel but what worries me is how angry you sound. Have you thought in asking for a referral to speak to a councillor, as it may help.

    I hope this is just a temporary set back and they can sort it out. Then they may find you another drug or Trial that will work for you.

    I know it is difficult once you have been in a Trial Drug hospital, to go back to the original hospital but at the end of the day, as long as you access the drugs you need, it really doesn't matter where you get them!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Hi Annette,

    I understand that I will be getting the same drugs, however my mental health has improved significantly since being treated at the RM. This is mainly due to the approach and outlook. I am somebody that needs hope, I will be referred back if a trial comes up. 

    I certainly am angry, the road to diagnosis was horrific. I definitely would not be in the mess I am if I'd been treated sooner. The main emotion is terror though, which I cannot shake right now. I spend most of my energy trying to feel hopeful and grateful. I need some routine because my treatment path has changed 3 times already and I only got diagnosed in October. 

    I am back to chasing appointments this week, the two week appointment booking needs to be booked in this week. So tiring! 

    Thanks for your reply, I will be back on an up soon. Moved bedrooms today, I now have a glorious view if the garden, my favourite part if our home...good start!

    Jo

  • Hi Jo,

    Again I certainly do know why you feel so angry as I was when diagnosed .

    After years of visiting various gynaecologists, I was always fobbed off with 'menopause '. Every symptom I had,  every ache, change of emotions etc, always told it was menopausal problems.  Asked for an hysterectomy on many occasions to be told it wasn't necessary. So when I was finally diagnosed stage 3a high grade endometrial cancer, I was so angry! I've complained to the hospital PAL'S to be told all procedures were followed as they should have been. Misdiagnosis. Delayed diagnosis, delayed treatment given incorrect HRT and even after surgery,  I believe I should have has radiotherapy and then chemotherapy to prevent recurrence but was not advised of this, so my cancer spread to my peritoneum where surgery is not possible and any treatment is palliative. So yeah....I understand where you are coming from.

    My oncologist was, in my opinion very negative, but I'm now on a clinical trial and HOPING, it is having a positive impact Pray

    Vent on here and get it out of your system. 

    Big hug!

    Helen xx

    Helen 
  • Hi Jo (JB2022) I certainly know what you mean about getting a diagnosis, as I'm sure lots of people on here, including myself, had to fight to get taken seriously. The GP I saw told me I was panicking for no reason, even after I told her my brother died of Malignant Melanoma in his early 40's. She told me to slap some cream on the lesion and forget about it!

    We just have to speak up because only we know how we feel. The appointment system is almost non existent these days, the GP's don't want to see patients any more! It is tiring but don't give up fighting for what you need!

    Good for you moving to a bedroom with a better view! Is that the one you painted or are you painting the other room now it is empty!

    Stay strong, we are all with you! Happy painting!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!