Arnys story so far

[Arnyspurs]

Hi All last Friday was the worst day of my life being diagnosed with this condition… I actually feel Alone … I have a great family support but I do not know to much about this disease I’m frightened senseless I’ve only heard the bad things and when my scan come next week I’m concerned what to expect… Thanks for listening Arny

[Ollies12345]

so sorry you have to face this, but I can say there is lots of help and if you can have surgery it can hopefully be a cure, dad had his surgery 7 years ago he’s had his ups and downs but on the whole he’s still enjoying his life. This forum is amazing so much advice on here am sure you will get some helpful advice. Sending warm wishes x

[Deeedals]

hi Arny, not the best day for you. I know my diagnosis date is imprinted on my brain forever 21.1.21. But you are definitely not alone, we’re all here with you and we’ve all survived our journeys in various ways and by various means. I had pre op chemo, surgery and post op chemo and whilst it was a tough time I’m more or less back to normal.

So take heart, we’re all rooting for you ❤️

[Arnyspurs in reply to Deeedals]

Thankyou

[Cavalier3]

hi Arny, I know how scared you are right now. There are so many positive stories here. I’m almost 4 years post treatment/surgery and loving a great life. I know people 24 years post surgery. Don’t read anything on the internet. Use this forum for help and take one day at a time.

[Arnyspurs in reply to Cavalier3]

I googled everything and I should have won’t be doing that Again Thanks for everyone’s support

[Cavalier3 in reply to Arnyspurs]

Let us know how you get on with your scans… this is the most stressful part of it all not knowing what you’re dealing with. There are many of us here years, decades down the line. Keep that in your mind.

[Arnyspurs in reply to Cavalier3]

Thankyou

[LarryLamb69]

Hi Arny, The news is a bummer to put it mildly, Unfortunately until you staging scans are all done and complete it is a journey into the unknown for everyone. If you get positive news about what level the cancer is there is loads of good everyday advice on here..such as eating bits, sleeping advice, exercise and general life tricks and tips. I am only 1 year post surgery and five months post my 2nd lot of FLOT chemo, ( most have chemo pre and post surgery and FLOT is the type of medication you have during it..a acronym)..but despite not living a 💯 normal life you can be not far off if all goes well..so there can certainly be a life to look forward to, and loads of help for that on here and front you Nurse specialist!!..all the very best

[Arnyspurs in reply to LarryLamb69]

Thankyou all the best to you my CT and pet scan are next Wednesday

[Sticky578]

Hi Arney, Like you, I too have been recently diagnosed with oesophageal cancer, what a whirlwind of emotion, very difficult to stay 100% positive when you start reading about it on the Internet. My specialist nurse gave me the details of this website, there certainly seems to be so many others out there that have gone down this route with very encouraging results. We are not alone.I'm under no illusion that the path to recovery will be long with many bumps along the way. Fear and intrepidation is natural but we'll get through this.

My first round of FLOT starts next week, not looking forward to it one little bit, one step at a time though.

Best wishes and stay strong.

Frank

[Arnyspurs in reply to Sticky578]

And to you Frank

[andyjw in reply to Sticky578]

Hi Frank - I had my FLOT treatments about 16 months ago and they were really effective in shrinking my cancer, even though they were pretty hard going!

My best advice is to take it very easy and avoid as much contact with other people as possible, to avoid catching any infections. Wishing you well for the future.

[Sticky578 in reply to andyjw]

Hi Andy, Thanks for your thoughts and advice. Trying to stay positive seems to be the name of the game. Maybe it might be a case of being easier said than done.

[Summerson]

Hi arny so sorry you are going through this I know how awful it is when you get this diagnosis, a lot of us on here have been where you are at the moment and it's horrible and you do feel so alone. I.m 6 years on from my op and there's a lot of bumps along the way but life is good and there's so many people on here who have survived years. Wishing you all the best everyone on here will help and support you. Take care x

[andyjw]

Hi arny I’m so sorry to hear you are going through this. I hope that following all of the tests, that the prognosis is good! I am now one year on from my operation, and there's been a few bumps along the way, but overall life is good, with several adjustments as I gain more experience of the effects and how my body reacts to the changes. Wishing you all the best for the future.

[Arnyspurs in reply to andyjw]

Thankyou Andy much Appreciated

[Smithyrat159]

Hi Arny, all good advice above from people who've been there and done that, no matter what you come across on your journey. Right now, at the beginning, to stop the whole thing from overwhelming you, I would try to only focus on what you can immediately control. 2 things ; prepare your body for what is to come by pushing yourself to be as fit as you can be ( it will help further down the line) and retain as much weight as you can ( you will lose loads). Secondly, allow others to help you emotionally; your family and friends want to help but don't know how so guide them by telling them what you want, a sounding board: a walk: quiet time etc etc. Also the specialist nurses are great and will be your best friends moving forwards. Good luck Arny, it's tough going but you can get through it as everyone on here can testify even though all our journeys will have been different. Let us know how you get on

[Arnyspurs in reply to Smithyrat159]

Thankyou very much I will let you all know what the future holds I’m starting to get the pain under my Rib under control Thanks again

[Magicwands]

I'm so sorry you are going through this, but you will get plenty of help and understanding on this website from people who have been in this very situation. I spent most of 2023 having treatment, and like you felt totally overwhelmed at the beginning. Some people say waiting for scans and results almost the worst stage.

Get as much info as you can from your surgical and oncology team, once you know what's happening, about your specific cancer and circumstances; that's what they are there for.

Everyone is here for you, so you are definitely not alone.

[Julieanne60]

Hi Arny. It is the worst day. I remember clearly, being told I had Squamous Cell Cancer, upper part of the Oesophagus, 10th May 2023. I feared the worst as the specialist who carried out the endoscopy a week previously, told me it looked likely I had cancer. All I could do to help my mindset was to go for long walks with my husband, every day. I tried to eat well and bulk myself up. I also read the positive stories on the OPA website, over and over again. For me, Chemotherapy started three weeks later for six weeks, followed by Chemotherapy and Radiotherapy for another five weeks (11 weeks in total). Thankfully I coped well and then the operation end of October. I am now 15 months on from the operation. I’m writing this from Austria on a skiing holiday.

Once you get the scan results you will have a clearer picture of the treatment you will be offered, and hopefully it will give you a sense of fighting back and taking control. I also had a loving and close family around me, but I chose to only tell them. For me, it was important to keep it private, but everyone is different.

Whenever you need to feel close to people who understand, contact this forum. We all have different experiences and different stories to tell, but we will always understand. Take care, Julie

[Arnyspurs in reply to Julieanne60]

Thanks Julie this has just knocked me for six and can’t wait to get a clearer path of where I’m going Thanks for replying I will know more from Wednesday onwards

[Julieanne60 in reply to Arnyspurs]

I will be thinking about you on Wednesday. I hope you can get through the weekend with a bit of a plan on how to make yourself feel a bit stronger. Take care.

[Arnyspurs in reply to Julieanne60]

Thankyou very much

[Tenerife70]

Hi my husband had surgery on 8th Jan, he is waiting for the next chemo treatment (had 4 sessions of FLOT) before surgery,) one of the hardest things was the wait for the results but once you know it’s amazing how you will be looked after and a plan put in place.

I do enjoy reading others stories and have asked for advice a few times now with very generous answers, I find it a bit comforting and helpful as I need to know how to help him if I can.

Good luck with your results and keep positive

Andrea

[Arnyspurs in reply to Tenerife70]

Thankyou Andrea