More waiting

It’s been a tough time for sure. The tumour made a hole in my oesophagus and set up an infection in my lung. It was a miracle that I didn’t get sepsis but after a 2 week stint in hospital I am at home trying to recover. It means an operation is not possible now. I have a meeting in 3 weeks to decide what’s next but my options are limited and it’s hard not to think the worst. The consultant I have is very blunt and it’s hard to feel positive after he has talked to me. I have a stent fitted now which makes eating and drinking easier. It’s hard to feel any positivity at the moment and I am having some really down days. 

  • Oh, Nan! I am so sorry to hear that you have been having so much difficulty. I have been thinking of you and wondering how you were. I’m sure it is very difficult to feel positive at the moment, but hope it is possible soon. As you are able to eat I hope you will start feeling better. I also hope there I’ll be something positive coming your way. Know that there are people wishing you well.

  • Please do feel the strong best wishes coming your way.

    You have been having a tough time, but take each day at a time. Ask yourself how you feel physically, and when that is not too bad, do not let it be overwhelmed by thoughts about what might be. You can eat and drink a little better with the stent. Welcome it and make the most of it. It is positive.

    Keep talking, both here, and wherever you get the opportunity.

    Best of luck. 

  • Thanks for your support everyone. This infection has knocked me for six and I feel so weak. Hopefully in a week or so I should feel stronger. You are right about one day at a time -I am trying to second guess the outcome of the next meeting which I know is pointless. 

  • So sorry to hear this, Nan. Sending you strength and healing vibes. Well done for getting through such a tough time. Try to focus on recovering from this particular episode and building back some strength. You are a strong and courageous person and you can do this. Thinking of you.

    M

  • Sorry to hear this Nan You were good enough to respond to me when I was feeling low I hope you can take some of your own advice and focus on positive thoughts Thoughts are with you 

  • Hi Nan. I’ve just joined the group so there may be some background I’m missing so please forgive if my reply has missed something obvious. I don’t know where you are based, but I had an operation in similar circumstances to yours (from the limited information in your text). If the hole in your oesophagus had set up an infection in your lungs then it sounds like it may have been a fistula formed between the oesophagus and trachea. I had that and my surgeon performed a radical salvage  oesophagectomy with stomach pull up.(basically lopped out my oesophagus and used part of my stomach to make the new tube). In parallel, the cardio thoracic surgeon used slabs of my intercostal muscle to repair my airway. Now I’m not saying it wasn’t a big operation because it was. But it was successful. My surgeons were at Guys and St Thomas trusts (upper GI at St Thomas, CT at Guys). There may be other details I’m not privy to (and you absolutely don’t have to tell me) which explain your consultants response, but if you are not satisfied with their answer in 3 weeks time, you are completely justified in asking for a second opinion (and I would recommend asking the lovely people at G&ST). I hope you are feeling better in yourself. 

  • Thanks everyone. It really helps to get your support. I am definitely getting stronger and have even managed a short walk. Eating and drinking is a lot easier although the new diet is very restrictive. The nurse from the hospital rings regularly to check up on my progress and he is so positive and helpful. I think the bluntness of the consultant has really affected me and I dread meeting him in June. I really feel that he has given up on me. Our daughter gets married in August and I need to be well for that so that is what I am focusing on. 

  • You can do it Nan! Just focus one step at a time and get ready for your daughter’s wedding.