Acute fear and anxiety

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After being given the all clear a year ago from a single polyp which was monitored for 3 years,with no issues, I was thrown into the shock and nightmare of a return in several places in my abdomen in January. I finally start chemo on Monday with a first round on pills as there was no appointment for a picc line insertion until the 2nd April. I am suffering from terrible anxiety which is off the scale. My GP has prescribed me a low 2mg dose of diazepam to help me cope but today I'm struggling big time. I'm seeking reassurance from anyone out there. I'm 65, vegetarian, never smoked, or drunk excessively and have been moderately active, and up until now, reasonably sane and sensible. However this diagnosis seems to have robbed me of my sense of agency. I am unable to eat, spooked by every twinge, frozen with fear and not able to do much or take any pleasure or distraction from anything 

Yesterday I had another Pet scan as a "bench mark". My first and diagnostic one was 3 months ago. I think the waiting has really got to me. I first had to have a stent fitted in my left kidney as a lymph node had blocked it, then another wait for a biopsy to be done on my liver as apparently the chemo will contain targeted antibodies this way. 

However, I am an absolute mess. Just looking for some hope somewhere. The only thing that has been said is that " the lesions are small " 

  • Hi  

    I am sure you are still very sane but this is a tough process . I have watch my mum go through four recurrences and it pressed in on you from every angle for a bit . However I do think you maybe need to talk to your team again about the mental health aspects . 
    Our helpline staff would be happy to assist on 0808 808 0000. It’s completely confidential and can talk through some of the aspects .

    Macmillan has also teamed up with Bupa to offer six free counselling sessions .Our helpline staff have the details .

    My mum’s team have always sought to use a systemic approach in the early years . Stabilise the disease then look at adding in other surgical or targeted options . It’s been a good plan and she is now 14 and 3/4 years since initially being diagnosed as a stage 4 patient .

    I think it’s good you have opened up about feeling the fear that comes with this diagnosis. I had to get help from my GP in the beginning and I was not even the patient . The actual scanning is frightening and complicated by the delay in information coming through . Wading through the uncertainty is hard at the start , my mum still has a tumour burden but it was something she learnt to live with . Treatments are hard and strong people know when to build in extra support to get them through the process . 
    I can only encourage you to get back in touch with your Gp to see if there is a better way to get the anxiety stabilised too ,

    Are you still able to exercise just now ?

    My mum’s recurrences was small too . Around four to five one cm lesions . I used to sit and look ant my finger nails and think  they were similar in size and felt encourage there were options in terms of treatment .

    Always here to chat . 
    Take care ,

    Court 

    Community Champion Badge

    Helpline Number 0808 808 0000

  • Thank you so much for replying. I'm running on empty. Up until recently I have been able to get out and walk but recently I find I am losing my stamina and finding it increasingly difficult to go far. Today I find I just want to stay in bed and of course feel concerned about my declining energy. I also seem to get very shivery which I attribute to the stress levels, and wonder if anyone else has experience of this?. I'm on a wait list for counselling. My GP is aware and being as supportive as she can

  • Dear Lotus321

    I’ve read your story and the kind words that dear Court has shared and my heart goes out to you. 

    The C word seems to carry such a weight that’s heavier than it deserves. There is so much that can now be done to treat this disease, and so many reasons to be positive even if they seem out of sight just now. It’s good that you’ve been monitored regularly which suggests that this latest development has been caught early. 

    The treatment can be unpleasant, but each of us will respond differently and the nurses are aware of the various options they can provide to help us through it all. 

    The diagnosis is a shock. You’ve done the right thing to come here. Please share your story as it unfurls and folk here will help and support you. With love, with empathy, with practical advice, and the wisdom of experience. You are among friends. You are not alone. 

    Every blessing
    Wellspring
  • Thank you, I will come back to this forum. I've been resisting reaching out which has been all part of my issue with the fear and anxiety. Today has been a particularly tough day and I'm so very grateful for the connection  here. 

  • It’s totally understandable  . But despite how you feel you did reach out and that’s a start .

    Sorry today has been so hard and hope tomorrow is kinder to you .

    Court 

    Community Champion Badge

    Helpline Number 0808 808 0000

  • Hi Lotus 

    I feel for you. I was in a pickle and I needed time to process 

    For me I decided that I could try and keep my mental health and body as well as I could manage. The rest I’d hand that to the experts. There’s nothing I could do 

    I listened to apps on my phone for head space. Mindfulness, hypnotherapy or similar. I found this did give my head some peace. 
    I did gentle pelvic exercises daily and ate the best that I could 

    I remember the night before my prep I had the biggest take out as I knew the prep would take care of it 

    ( I had issue’s opening my bowels as I was close to blocking)

    Take Care 

    Best wishes 

    Ann
     ‍Art

  • All so helpful to hear from you all, heartfelt thanks. Just had my first infusion and been given a bag of so many different pills along with a complex timetable. The warnings and what to do in emergencies were of course necessary but horrible. I found when I left that my mouth didn't work properly and I could hardly speak which I am hoping is just from clenching my jaw so tightly during the process.

    I find my main worries now are centering around feeling and being sick, although I do hear that not everyone gets this. It is obviously individual.

    So much to take in, so overwhelming 

  • Ah,  When I left the hospital after the first infusion,  I completely lost my voice,  which was frightening!  However it returned after about 25 minutes,  so I think that's a common effect.  Next time: please wear a warm scarf around your neck to protect your throat from the cold.

    I also wasn't prepared for the fact that taking the first mouthful of food caused pain at the back of my jaws.  I found that for the first few mouthfuls of a meal I had to suck the food,  or only open up my mouth very slightly!  Has anyone else had this effect?

    There are loads of so-called "side" effects,  but most people only get 2 or 3 of them,  I gather.  So I hope you don't suffer from any more than that!  best wishes.

  • It came right after a bit which was a relief. Now home and managed to eat some weetabix and banana ( I did think I might need to buy some straws.)

    Now on sofa with a hot water bottle not sure what to expect next

  • Hi  Yes it is a known side effect called ‘first bite’. It helps to take a little bite first then carry on from there - I found that it only tended to affect me for the first couple of days after the infusion x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm