Waiting, worrying and thinking the worst

  • 11 replies
  • 49 subscribers

My husband went for an endoscopy last week.  He had had problem swallowing for about a month.

They took 8 biopsies and we were told straight away it was an established cancer which was about 30cm long!  We were both shocked and cried 

 CT scan was on Friday and its now the waiting game for the appointment to be told what’s what.   But to be fair so far it’s moved quick.  

Meal times are stressful, we have adapted meals so it’s things like rice and mince that will go down easily but evenings he get so anxious about eating it makes things worse.

I am trying to the positive and strong one for him but inside I am falling apart.  He lost his mum and sister to something similar and seems to have resigned himself to the fact he is going to die and it’s spread as his stomach as that’s tight and solid. 

I keep saying ‘our story isn’t over yet’ which actually makes me well up each time I say that. 

we have an allotment which at least keeps out mind occupied for a little while, but the sense of dread always returns. 

Being in this between phase is not nice.  Any words of advice or what to expect next would be gratefully received.  

  • Hi

    Yes, the waiting and worrying is awful. So glad your allotment is where you can escape, even if for a short time. That respite is golden for those of us caring for someone with cancer so advise you to keep it up - your fellow allottees may rally round (as ours did) if you need some help or need to cover parts of the plot. We did this as we didn't want to worry about the weeds as well as everything else. Have you been told whether there are any local support groups? Or a Maggie's? There is the Macmillan helpline as well.

    You should be offered a treatment plan and also be introduced to the specialist nurses. They are in my experience very responsive and supportive. Hope this helps. 

  • There is some wonderful stories on her which you should try and share with your husband to give him some hope. My dads oesophagus had spread to the liver and lymph nodes and we are currently on round 4 of chemotherapy, tumours have shrunk and no further spread and he is doing so much better than before treatment started. 

    There is some wonderful treatments out there and the consultants want the best outcome possible for everyone. 

    Keeping positive helps the mind and body I believe. Keep fighting!

    Please do not hesitate to reach out to us throughout your journey. Everyone on here seems to have experienced something which they can give advice to.

    Much love x

  • Hello

    I wrote on here back in Sept 2023, I was waiting and it was the worst experience ever, I took myself to a dark place, I felt consumed. A person Niki on here, reached out and her post just helped, she told me that once I had the diagnosis it would get better and weirdly it did, I was given the diagnosis and treatment plan and with that a life line, hope.

    It is a tough journey and everyone’s is different. I have an allotment but I made the decision not to plant this summer but I still visit  and pull the weeds! 
    As well as the other support groups there is also the OPA website that has a forum, all here for you both. 
    Take care 

    Jennie SparklesSunflower

  • Hello. My husband had an endoscopy last month and was told too it was cancer straight away. We were in the limbo stage for 2 weeks not knowing if it was operable. After the CT and PEat scan, we were told on the 29/04 that the cancer had spread to 1 lymph node and was operable. Since then it has been easier to deal with emotionally. My husband starts Radiotherapy on the 17/06 and his surgery is due in August. Physically he finds the tumour painful, eating takes time, and he tires quicker. I feel hopeful, but it's a long road ahead. x

  • # That should say PET scan

  • My husband has a rare cancer that doesn't respond well to chemo. However, he will be having chemo once a week with the radiotherapy, as this helps the radiotherapy be more effective.

  • Hello Kitty

    Do you mind me asking what rare cancer? 

  • I'm not sure JenJen. The oncologist did say, but it's hard to remember, as I'm not familiar with the different types. He did say it was a cancer usually seen in the bowel not the oesophagus, so there was a risk it may be a hereditary cancer. They have sent my husband's biopsies to Bristol for further investigation and answers. I hope it isn't hereditary, as we have two children. x

  • the waiting for results is hard. Take each day as it comes and try and live for the now.

    my husband cancer has spread to his liver. I know hock yous are feeling. Take care xx