Chemo and Radiotherapy

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Hi. I have just joined (abit late to the party!). This is my first post. I was diagnosed with oesophageal cancer in March 2021. I had difficulty swallowing but have never had acid reflux or any digestion problems It was such a shock. I had only been in hospital twice in my life and that was to give birth! I had chemo first which damaged my heart and then I was given a McKewns oesophogectomy (still dont know how to spell it). I had a leak in the join and was fed through a tube in my stomach for 8 weeks. I was in hospital for 18 days. They were very long days as no visitors were allowed due to COVID and the days weren’t broken up by food and drink. Anyway at home I was attached to a feeding machine 12 hours a day with regular swallow tests.I slowly began to recover and after a few months we were back to walking 5-10 miles regularly. After the feeding tube was removed I struggled to eat and could only manage soft foods for a while. I also had 14 throat stretches to enable me to eat more.2 years went by, 4 trips abroad including 2 cruises, another grandchild and lots of lovely weekends away. On my last throat stretch in March they took biopsies- and it was back. An operation was out of the question so I have had 5 days of chemo (a different chemo than the one I had before) and 25 sessions of radiotherapy. I finished all this last Friday and have felt absolutely rubbish ever since! I haven’t been out of the house and today haven’t even got dressed! Apparently this was to be expected  - not by me! I am on morphine for the pain, constantly feel nauseous and I am beyond tired and weak. Has anybody else experienced this? If you are still reading - well done. Sorry it’s so long.

  • Hi sallyann

    my husband has just finished the chemo/radio stint and has the same symptoms. Unfortunately his tumour is high up and inoperable so this is his only shot. He can’t wait to do all the things you’ve done like the holidays and cruises but it’s a slow old process. 
    He started off walking and going to the gym and then bang! Overnight the symptoms you described all came at once. He can’t even be bothered to walk into the garden. On top of the symptoms you state below, the radiotherapy has fried his neck and is an open wound. He lives on Fortisips but can’t swallow anything. Like you he’s on morphine and cocodomal daily. Luckily his had a peg fitted which does help keep him hydrated as he takes his water that way. In short the symptoms are normal and although your team will tell you to expect some fatigue, it’s nothing like you can imagine so you are not alone. Just keep on keeping on. Big hugs Gillian 

  • Thank you Gillian. There is no tiredness like this. I can’t even be bothered to go in the garden now, like your husband and I love our garden . My partner has been wonderful throughout this whole 3 year nightmare.I don’t know how people cope on their own .Sending hugs to you both and don’t forget to look after yourself as well. X

  • Hi Sallyanne

    i just finished treatment for breast cancer which was radiotherapy and chemotherapy I was fine all the way through chemotherapy but after three weeks radiotherapy about two weeks later I felt awfull l was  tied couldn t be bothered to do anything , I was to weak to walk up the stairs, l live on my own but got great support from my friend I gradually took short walks every day , took it easy slept when I felt tied and went to bed before 9pm every night which is not me, i was taking pain killers because my body was aching from head to toe.  l  soon got b ack to feeling  some what normal.  2 months after my treatment finished I found out I had oesophageal cancer which is a new primary. I am now having treatment which is chemotherapy and radiotherapy three weeks into radiotherapy I’m feeling exactly the same tied worn out and no energy to do anything I do try to have a short walk everyday but not walking like l used too, 

    Only advise i can  give is to just take it easy , take short walks , rest when you want and I did everything I wanted to do in the morning by the afternoon I was to tied to move. Treat it like if you have had an operation, it takes weeks to get over that.  Your body has been through a lot give it time to heal 

    jayne x

  • Dear Sallyanne. I have just read your post. You really have been through it. I hope the regular throat stretches mean that it’s been caught early, but even so, what a shock it must be for you. You must be feeling so frustrated especially with the intense lethargy and pain (but don’t worry about not getting dressed today - tomorrow is another day). I just want you to know that you have really struck a chord with me (and probably many others on this forum) and I hope so much that things get easier, you get your fitness back and you can beat this. Thinking of you and your husband. With love, Julie 

  • Thankyou Jayne. Wishing you every success in the future. Look after yourself x

  • Thank you Julie. Let’s hope the sun starts shining soon and we all start to feel a little better. Look after yourself x

  • Hi Sallyanne, 

    Thank you for reaching out and joining the forum, you are very welcome here/

    Your story is certainly a roller-coaster, and I am sorry to read that you have had a return of the cancer, and also this last bout of treatment has left you feeling absolutely rubbish.   

    You have been so strong over the past three years since original diagnosis, you have been through so much and come out the other side, having enjoyed trips abroad that at one point during that first journey you would have felt would be impossible, and although right now you feel beyond tired and so weak, I hope that you will find within you the inner encouragement to take the baby steps you need to attempt to get through this part of your journey. 

    The Macmillan support line is open daily, and their phone number is in my signature, please don't hold back from calling them if you feel like this in the morning.. they will listen and they will be there for you every step of the way. 

    I can't begin to imagine how tough this is on you, but you have stepped into the forum, keep chatting with us, we are here for you too. 

    Lowe'

    Call the helpline for free on 08088080000, 8am to 8pm everyday.
    Tomorrow is not promised but it always has potential. Aim for your potential!