Newly diagnosed

Hi there!

I had my op two and half years ago now and I can remember the waiting game for appointments and results.  Your mind always wandered - either that or i would spend time looking at Google. Big mistake. The information was so outdated. You are at stage 2 which is very positive and there will be light at the end of the tunnel with a curative plan if action.

I found that being positive was a great help. Being positive makes the battle to survive less difficult. I took each appointment as a battle to be won and didn't ponder on it after it had passed.

It is a difficult time just now but enjoy it with your husband .

Writing a diary and documenting the journey will be a great idea - I started one but was too ill to continue.

The Macmillan helpline would be helpful too just to talk and support you when you are low. I was lucky that my children were my focal point and I needed to be there for them as best I could. 

Everyone is unique and hopefully your journey will be easy. Just go with the flow and try to keep yourself busy. Whilst waiting for appointments etc I spent my time trying to get fit as I was so unfit  and unhealthy.

No one in this community will mind your rambling posts as we have been there and got the t-shirt and totally understand you.

So if you need anything just say.

Kind regards, 

Rfk2018

Hi Dee,

I just wanted to acknowledge what a frightening and lonely feeling time this must be for you. I'm a 59yr old woman, diagnosed with the same as you but stage 3 in March 2018. I live alone but I think no matter how close you are to people, it's impossible for them to know how this kind of diagnosis and daunting treatment prospect ahead feels. I had 8wks chemo, the oesophagectomy about 6wks after and then 20 radiotherapy sessions. I was also on a feeding tube for the first couple of months because of late diagnosis (I didn't have time or energy to spend being angry about that at the time, you sound similar maybe? It'd waste precious energy you need to face what's to come worrying about what could have been done earlier etc.)

This waiting, in-between time your in I think can be the most anxious and terrifying, nothing happening and so much unknown. I found it "better" when I was on the treatment train (as it were) because then I just had to turn up, accept the care (it helped me to think of every bit of treatment no matter how harsh as "care") and do my best to be as well as I could in between appointments. Even tried to get a bit fit (walks, not gym!) before the operation to help recovery time, it did the trick. That's looking too far ahead though. I really tried to just focus on the next thing rather than the whole picture. 15th must feel an age away but probably after that your treatment plan will be up an running and you'll be kept busy with that. I don't want to sugar coat anything but sometimes what we imagine (or have seen on the media) of chemo, big ops, radiotherapy can really fuel fear when in fact it's different for everyone. Some people have complications, bad reactions, others don't. That's why a step.at a time is best way to go. If there's anything you want to ask please do. I'm recovering well as many others do, slowed down by the pandemic but going through the treatment was worth it. 

I understand how frightening it is. I was knocked off my feet (literally for a while, kept banging into bookcase in my lounge, reeling with confusion.) In the end though just treating yourself with lots of care is the best possible thing to do for what's ahead. Your health is just as valuable as your partners and you'll need all your strength to get through it but you will.  Please don't think you're moaning. Airing your fears and concerns at a time like this and getting some emotional support in place is very healthy and wise. 

I really hope your fears subside and you get a treatment plan sorted and on your way through to recovery. Go easy on yourself and I wish you the very best.

Bernbe

Thank you so much for your reply x

Thank you so much for your reply and good wishes xxxx

Dear Dee, 

I'm so sorry to hear about your diagnosis. I also remember my diagnosis 34 months ago. It was frightening, and I went from knowing nothing to becoming an armchair expert in oesophageal cancer within weeks. 

I remember the waiting time between my endoscopy and biopsy results (2 weeks) being excruciating despite the doctor who gave me my endoscopy saying that in his opinion my 6cm tumour was malignant. I also remember being initially diagnosed with stage 4 cancer, but after exploratory endoscopic surgery they found my tumour was resting on my diaphragm and the cancer had not spread to me diaphragm and I was restaged to T3N2M0 and offered a curative treatment pathway of FLOT chemo --> surgery --> FLOT chemo. 

I also remember the wait between final staging (all the tests), preparation for chemo (an iron infusion) as I was very anaemic due to my bleeding tumour (pun intended)  and the start of my first dose of chemo  being very frustrating. I think it was about a month? And i was told the delay was due to no seats available in the chemo day wards. 

But bottom line is I completed the treatment and am still in remission. But you will need help especially after surgery. Lets hope that COVID-19 is under control by then and we can emerge from our isolation and see family and friends again.

Anon613, thank you so much for your reply, not long to wait now, just 5 days until my telephone oncology appointment and 10 days for the gynae rapid response appointment. Considering my diagnosis ( like yours, thought to be malignant at endoscopy) to final appointment on 25th has only been a month, but God it seems forever !