osophagus cancer diagnosis

Hi,

I have recently been diagnosed with oesophagus cancer stage 3 and have come across this forum while googling, since the middle of September, I have had a plethora of tests and have been very well treated by the hospital staff, I’m starting my FLOT treatment in 9 days’ time a regime of 4 rounds 2 weeks apart then hopefully followed by surgery and then another FLOT regime.

  • Hi Hilts and everyone,

    I hope your husband's consultant sorts out the nuisance cough. Be interesting to know what percentage of patients have this type of ongoing annoyance. 

    My husband sees the Consultant oncologist next week for his 'check up'. Fingers crossed he is doing well. He has been to the local gym for the first time since diagnosis. He has taken part in the 'Active Recovery' NHS program since diagnosis apart from during treatment/ operations!

    Fingers crossed we get to Tenerife at the end of March!  

    Also I thought I'd mention he was contacted by letter from the hospital to offer him a fourth jab which he has opted to take. It was because he was immunosuppressed when he had previous jabs.

    Very quiet on here which I hope is a good news as I think of you all on your respective paths. Sending healing hugs and caring thoughts.

    keeping the faith

    Milly

  • hi Hilts 

    on the  ittitating cough situation mine has all but gone since i started regularly rinsing out my sinuses with Neilmed saline sinus rinse dissolved in warm water every morning , my voice has also improved and is as loud as ever which is good as i am prone to roaring and shouting according to my friends , i just realised my irritating cough had gone after reading your post and i have been using the rinse for about 3 months  you can also use household salt dissolved in warm water and a syringe so i was told by an ENT consultant , might be worth a try , anyway take it easy and hope you are both well.

    Regards

    Douglas

  • Hi All

    My Husband had the Ivor Lewis op yesterday.  All went as planned they said.  Had to take quite a lot of his oeasphagus away the surgeon said. 
    Struggling to get on top of his pain at the moment, in particular his right shoulder blade, anyone have experience of shoulder pain post op. I know it's early days, but he was so distressed when he spoke to me earlier.  Feel so helpless.

    thanks

    Tracy

     

     

  • Hi Tracy

    yes the shoulder pain is common and was the only thing i remember asking about in intensive care and i was told it was directly linked to the surgery and it had all but disappeared by the time i was discharged    one thing to mention is the initial weight loss  which also means loss of muscle mass i am 2 years on now and just starting to regain mine  , anyway take care and feel free to ask about anything there is a wealth of post op non clinical knowledge on here.

    Regards

    Douglas

     

  • Hi Tracy,

    Firstly I'm so pleased to hear that your husband has had the operation and it has gone as planned. That is such a huge statement. I hope you are able to visit him - I wasn't at the time due to COVID restrictions.

    My husband said yes it's painful but the pain relief is good. He was on pain killers for a longer time than most due to having 2 further emergency operations. As we always say on here everyone is unique and pain levels vary in people. However it is a common feature of this type of operation. My husband is now off painkillers.

    It's very early days after a mahusive operation. Better to take all the pain relief offered. Take one step at a time - it's a long road but people do come out the other side. 
     

    i wish him and you a steady path to recovery. As Doug said lots of experience on this thread.

    keeping the faith 

    Milly

  • Hi 

    So pleased the op is over Tracy - recovery is slow and steady. I still have very slight shoulder pain and have lost a lot of movement in my right arm - but it doesn't restrict me at all - there are ways around everything   I really cried laughing the other evening - I tried a shift dress on as weight loss meant I may get into it again - it looked good!! But due to lack of arm movements, I couldn't get it off!  Ended up cutting it off  - would have made a great comedy sketch - just have to laugh!!

    Anyway - I have a question!!  I quite often still feel discomfort when I swallow - not all the time - feels like swelling in my throat!!  Anyone else had that??

    Seeing consultant next week and will mention it - but thought I'd ask. 

    Happy weekend

    Andi xx

  • Thanks everyone for the replies. 
    unfortunately no I can't vist because of the Covid. Makes things twice as bad not being able to visit. 
    long road ahead.  Keeping everything crossed, for good biopsy results.

    thanks

    Tracy

     

  • Hi Andi 

    i have had the same problem with the lifting your arms high enough to get a tshirt or jumper on and off for the first seven or eight months , i also had the dreaded bingo wings but now i am at the gym i have managed to sort the muscle loss problem , i am still working on the turkey neck if anyone has any tips let me know , anyway take care as always.

    regards

    Douglas

  • Hi Andi,

    Good to hear from you! You made me laugh re the dress!

    My husband has been part of the NHS Active Recovery Programme that has been on zoom. They do a gentle chair exercise one day and a slightly more energetic one on another day. Maybe worth asking the consultant if your NHS Trust does something similar for cancer patients? Do you swim? Doing gentle exercises in the pool with the support of the water may help?

    Your team know you so they would be the best people to ask re your arm and swallowing. I know some people need a small procedure to stretch the oesophagus sometimes due to scar tissue forming.

    You have come such a long way since your op and extended weeks in hospital. Well done! I guess if someone had told you when you were very poorly about your dress episode you'd have found it hard to comprehend that you'd be trying a dress on let alone cutting a dress off! Lol.

    Hope your appointment goes well and they give you some help/advice.

    keeping the faith

    Milly
     

  • Hi Tracy,

    Yes it does make it difficult not being able to see your husband. I must say the Consultant Surgeon and ICU staff were very good at keeping me informed but still not the same as actually seeing them. He did get his mobile back after a couple of days but the Wi-Fi was useless so only managed a FaceTime once during is extended stay. Hopefully your hospital's Wi-Fi is more reliable!
     

    The time will pass and he will be extremely busy with all the care they give. My husband can't praise the staff enough for their care and compassion. Yes fingers crossed for good biopsy results - it's a very tough time for you all. There are positive stories and my husband is doing well so far (fingers crossed). We are thinking of you and sending healing and positive thoughts your way.

    keeping the faith

    Milly