Feeling selfish for being nervous, op date looms!

Hi All,

I am feeling very selfish for posting this, My Dad has had his date for the op, which is next week, and i feel nervous, for many reasons. I also feel selfish for thinking like this as he is, so far, one of the lucky ones.

I am nervous because i have been reading a few posts recently about people going in for the op, all prepared, and then this being abandoned due to the cancer spreading and not showing up on scans. I am so worried.

My Dad is so ridiculously well at the moment, he is almost 5 weeks past chemo now, and he is almost back to feeling himself. His eating is better than it has been in months, he can eat everything, he is riding his exercise bike 10miles per day and walking my dog for me now that i am back at work. He often picks my daughter up from nursery and can more than cope with her on his own, and she is a very demanding 11 month old.

I am trying to be positive, as i have managed to all along, but the dread and worry is now creeping in that they will go inside and abandon the op.

I feel so deeply sad for those who are in worse situations at the moment and i feel terrible for this almost attention seeking post, but i can't help but need a little bit of reassurance.

I hope you are all well.

Amy xxxx

25 Replies

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  • Amy

    Do not feel selfish. You are not. You are being honest and that is never a bad thing.

    It is absolutely normal to feel what you do and like your Dad does. I got to feeling so well before my surgery, I would dream that I would be told I didn't need it and everything was fine again. During the day I would worry constantly that the cancer would spread between the chemo stopping and the surgery beginning. I was told that this is very unlikely as, once the chemo has started the cancer rarely spreads and the impact of the chemo is long lasting.

    Everything about this disease makes us question ourselves. That is part of the disease. Sometimes it feels worse than the physical disease itself. It gets into every moment of every day making us down when others think we should be up and up when we maybe should be down.

    Two years on from my surgery and there is not day that I do not worry about it. I just deal with it a little better but still appear to others to be grumpy when I am actually just scared. It sometimes think it would be great place if we could say what was really happening in out heads or see inside others heads.

    Getting over the surgery is a long road but you do get over it. My surgeon (the wonderful James Gossage) told me the day after surgery, that "I will get better every day". That was 100% true and I kept that message in my mind all the time.

    Good luck.

    Bruce

  • Hey Bruce, great to hear from you.

    Thank you for making me feel human, and for sharing your thoughts.

    I really appreciate, as always.

    I have just read a few posts recently where people went in for the op and the spread has been found whilst the surgeons are in there and then they have abandoned the op.

    As if there's not enough to worry about.

    But I am so proud of how far he has come and how well he is.

    Hearing from you definitely helps.

    I hope you are well.

    Amy x

  • I know that you are worried. It is a big change going from being able to eat everything to being able to eat a lot less post the surgery but your dad is doing the right thing with all the exercise and that will stand to him. Yes, the fear is there, I know that I had it but the operation gives your dad the chance not to look back.

    I am speaking as a 10 year survivor of this cancer who had this surgery but had her children after it. I am 43 at this stage but was 32 when I had the surgery, my girl is 5 and my boy is 6.

    Sending you virtual hugs,

    Aoife

  • Thank you Aoife, that is truly amazing! I hope to be able to tell a similar story for my Dad in 10 years time, he is currently 56.

    Amy x

  • Hi Amy,

    Don't feel selfish for posting. It's very understandable for being nervous.

    I'm glad your dad is doing well after chemo. That is really positive for his case. Please don't stress yourself out as it doesn't help anything. I had esophageal tumor removed 2 years ago. I was the lucky one as the tumor I had was benign (it's called schwannoma which is rare on esophagus), tumor was big (size of my heart) & was very close to my heart. Luckily I found best surgeon in the world for my case. I had 1/3 of my esophagus removed and my stomach pulled to connect. Within 2 months of the surgery I gradually resumed my workout routine. The point is I almost did not worry about my surgery before & after. No stress no worry, only the desire to build the strength to get my body & my life back to normal. I'm now 47 yr old, female.

    Try to keep positive but be prepared for the worst.

    Best luck to your dad op

    Kristin

  • Thank you Kristin, I am glad to hear that your tumour was benign. I hope you are doing well.

    You have a very positive attitude, it really helps.

    Amy x

  • Amy,

    Anyone would be worried, he is your dad & he is not well, must say he sounds like a very strong determined person who is not taking any of this lying down & that is a good thing. Attitude & physical health will work for him. As with any operation there are risks but your dad has given himself the best opportunity to ensure everything is sussesful. You are not going to stop worrying, it's not possible, but try & visualise him coming home from the surgery, a bit sore but smiling and maybe doing that a few times will help reassure you he is in safe hands.

    All the best for you and your dad, plenty of people on here have been through what your dad is going through. I did, it was not always easy but with family members like you who care, we find the strength to battle on so give your dad a big hug, tell him he has an important job as a grandad & smile. He knows you worry.

    Take care

    Z

    Xx

  • Hi Amy,

    It's so natural to worry. it's clear you are extremely close to your Dad, and I think the carer goes through the mill too albeit in a different way.

    As brucemillar says, you never really stop worrying as our lives have been affected by a horrible and life threatening disease, BUT your Dad has done everything he can with his excercise which will help. Dave, as you know is recent to surgery and had the op at the same hospital your Dad will. He did have many complications and has had a rough ride needing dilations, but he has walked every day with the dogs from about 6 weeks post op, and some days will walk 5 to 7 miles (in several stints), he has also started phasing back in to work 3 mornings which isn't bad after only 4 months!!

    Your Dad is young and fit, with a caring family, so I'm sure he will progress well.

    Take care, and if you need to chat, I'm on facebook so message me and I'll let you have my number.

    Lynn xxx

  • Hi Lynn, thanks so much for your reply as always.

    I hope that Dave is ok? I often think of you both, and wonder if you are ever walking on the chase when we are! I wonder if we have walked past each other. Such a small world I wouldn't be surprised.

    I just desperately hope the op goes ahead.

    I am trying to take each day as it comes and I just pray that they can finish what they go in for.

    Thank you for the offer of a chat. I may just take you up on that offer.

    Thanks so much. Best wishes to Dave.

    Amy x

  • Hey Zantri, he's extremely strong, positive and determined. So I hope this stands him in good stead.

    Thank you for your post, it brought a tear to my eye.

    I really appreciate your support.

    Amy x

  • Hi Amy,

    Please don't feel selfish, these are all natural feelings you are going through. you have armed yourself with lots of information about this and yes you will think about the worst scenario - I did the same. Just like your Dad my husband was in good health before the operation and he was only able to have 1 1/2 cycles. He ate well and was in good health pre the op. I remember the day well - it was 3 years go next week - a boiling hot day and I really did remain as calm as possible with Surgeon promising to ring me afterwards. The op lasted 8 hours - and yes a call from the Surgeon saying it had gone well. Your Dad sounds fit and healthy and ready for this and they will take extremely good care of him. The fact that he has reached this stage is great and I am sure positivity will carry him through. Keep us posted.

    Sue xx

  • Hi Sue,

    Great to hear that it's been almost 3 years for your husband. I hope he is doing well.

    Thank you for your supportive post.

    It really does help.

    Amy x

  • Hi Amy

    Wishing you positive thoughts for next week. It is reality hitting you but the op will be for the best. I remember it hitting us hard the week before would i still be here , how would i be after etc. I being the patient didn't break down till morning of operation. I felt well and knew i was going to be in pain and poorly etc. my husband and daughter were told not to hang around at the hospital but keep busy. It was a long 8 1/2 hrs for them. The moment the phone rang to say i was out was a relief.

    I looked good apart from the tubes etc. i did everything i was told. The critical care team were first class informing my family what was going on etc.

    He has done the right thing building himself up. We went for a meal the 2 days before and i remember eating 3 courses. It is different 14months on but recovery was good. Yes i had to have a stretch whilst in hospital but i eat small regular meals or snacks now.

    Just off to gym to meet up with some breast cancer ladies who i have met through Macmillan fitness.

    Good Luck

    Debbie x

  • Hi Debbie, thanks so much for your post.

    My Dad is very determined and just wants to get it done, he will do exactly as he is told so I hope that he can be a good patient!

    Glad to hear that you are doing well.

    It really help.

    Amy x

  • Amy, your dad sounds like he's being really brave. When you go and see him after the op., YOU WILL GET A SHOCK to see him all attached to lots of tubes etc., so give him your biggest SMILE and tell him he's AMAZING. Don't forget, the medics don't do the op if they don't think there'll be a good outcome. We're all thinking of you x

  • Hi Rsw1fe, he's the bravest! He really is.

    I could literally cry I'm that proud of him, he makes my heart burst.

    I love him so much and I just want him to be well.

    I am desperate.

    I will do anything.

    Thanks for your post, I will do just that!

    Amy x

  • Only me again Amy - you remind me so much of our daughters Emma and Zoe. Love their Dad so much and I would say hero worship him. I spent the day of the Op with them after taking him in early in the morning. Not only did the Anaesthetist come and see us but so did the Surgeon and totally put our minds at rest. As Rsw1fe says when you visit your Dad after it will be a bit of a shock but after the op recovery is run like an exact science - certain things to achieve gradually each day after the op. My husband said to me when he woke up -'I know it's gone now' and that just gave him more strength. Is your Dad having the op with or without the feeding tube ? xxx

  • Hi toots! Lovely to hear from you again.

    Thanks so much for your post.

    My Dad is defintely my hero, even before all this.

    He hasn't got a feeding tube at the moment, so far he hasn't needed one as his swallowing didn't ever get that bad. But he will be having the jej tube I believe.

    At the moment, the plan is just to remove the lower part of his oesophagus and pull up the stomach so not a full oesophagectomy.

    I hope you husband is doing well.

    Amy x

  • Hi Amy - sorry meant to say jej tube - he is having same op as my husband but he didnt have the jej tube - in Nottingham all down to which surgeon you have. Yes my husband is ok thank you. Do keep us posted and will be thinking about you and your Dad.

    Sue xxx

  • We are in Nottingham too, all my Dad's care so far has been at the City Hospital, they've been fantastic :-)

  • Hi Amy, I know exactly how you feel, my Dad has one week of tablets left then he will get a date for his op. He is suffering at the moment with hand/foot syndrome but still stubbornly continuing to go for walks and stay as fit as possible 😉 The op frightens me too as it is a lot to go through and my Dad is 69 although doesn't seem it! I think we both have very strong and determined parents and I'm confident they will both come through it ok albeit a bit battered and bruised! They both have grandchildren which is a huge motivation. I'll be thinking of you, let me know how he does xxxx

  • Hi Nat, great to hear that your Dad is nearing the end of his chemo, I dare say, he should soon be feeling much like himself. It was almost an instant change for my Dad and he now feel almost 100% well, 6 weeks tomorrow since his last chemo tablet!

    I am very worried about the op, but I am more worried that they won't be able to do it.

    I have my head around the fact that he is going to have tubes coming from here, there and everywhere, but I am petrified that they will go in and find something and cancel it, just due to this happening to others recently, I didn't know that could happen until reading it on the Macmillan forum.

    Although I suppose anything is possible with this nasty thing.

    I hope your Dad gets his op date soon too. There's hopefully light at the end of the tunnel for them both.

    Thanks again.

    Amy x

  • Amy

    I had very few tubes after the op. Yes you have to have some, but.....Withing 48 hours, I was able to get off my bed and walk (with some help) but I was able to do so - tubes'n'all. The nurses are brilliant, superb, fabulous. They want you up and walking and will push you hard to make sure you do. Lethargy is the enemy and aids infection and they know this well. Within 7 days I was free from all tubes and able to get up and walk without assistance. I didn't walk far, but the nurses had a regime for me, with goals for how far I had to, and how many times, I had to do, each day.

    I was 57 years old at that point. If I'm honest... Being told it was time to go home was frightening. I think that I became very dependent on the nurses and their encouragement and their constant presence. It makes you feel secure and safe. I walked unaided to my wife's car and she drove me home for two hours thru the London traffic.

    It's a distant memory now. But I not ones that I have bad feelings about. I feel tremendously honoured to have been with the medical team that looked after me so well.

    Bruce

  • Always great to hear that you were so well cared for Bruce.

    I'm sure the regime that they had you in was for good reason and I have assured my Dad that this will be the same for him and that he must listen!

    He has been told there may be three tubes, I think.

    But all for good reason!

    I just want this done now to its full potential. I just hope it goes ahead as planned.

    Reading so many positive stories is such a huge help and makes him more determined.

    Thank you.

    Amy

  • Feeding. Up the hooter.

    Draining. Out the middle.

    Pee. We know this one.

    I had two drains.

    None of these are painful. All of mine were put in while I was out for the surgery.

    After day 1 you don't notice them.

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