Im really struggling with MY fears to the point where I really believe I'm letting my husband down very badly. I'm hoping that some of you out there can help me be more positive and less scared and pessimistic.
Alan had his op last July. His 9 weeks of after surgery chemotherapy finished in December. We've seen the professor in December and March and all is considered to be well. A friend told me to think of it this way: the cancer was completely removed last July. The affected oesophagus was thrown in a bucket. Now that it's all over you don't carry that bucket around with you.
I understand and appreciate that way of thinking but I find it really hard to stay on that positive mind track. I'm so scared that it will come back or return somewhere else as a secondary cancer. I find it hard to think about the future, or plan for the future any further than about a month away. I have this stupid idea that being too positive will jinx things.
I feel that Alan is coping with this better than I am. He's commented on the fact that I seem distant. That makes me feel terrible as he's been through more than enough.
But changing my mindset seems easier said than done.
I think I was a bit thrown when we saw the professor for the checkup in a December, just after the post surgery chemotherapy ended. The professor had always been bluntly honest about the odds right from the outset: 1 in 3 chance. So in December, having been told that the cancerous oesophagus had been completely removed and that the accompanying removed lymph glands had shown no sign of cancer as a result of the pre surgery 9 weeks of chemo, we expected the professor to say that the odds had improved. His reply was that the odds don't change until 2 years, and then 5 years, after the operation.
That certainly threw me. Or maybe I've misunderstood?
I'm not keen on the idea of going to talk to Macmillan nurses or anything and I particularly don't want to have to tell Alan about the difficulties I'm experiencing when he is doing his very best to get on with life in as positive a way as possible. Through going to see a nurse or counsellor I think I'm frightened of having to explore my fear more than I'm already doing. And right now the fear is kept in check most of the time as long as I don't dwell on the subject.
Alan did have a T3N2 with no metastisation. The professor has said that the cancer was removed when the oesophagus was removed. He also said that the lymph nodes that had been affected had been totally removed and showed no cancer when examined after the op.
Alan returned to work 2 months ago and is working half days until he feels he can cope with full days. The professor is pleased with his weight (61kg) as it seems to have stabilised. The professor thinks it unlikely that Alan will put on any more weight but assured us that 61kg is good. He doesn't manage 6 small meals a day but he does always have a sort of half portion breakfast, lunch and dinner and he usually manages to squeeze in some cheese and red wine before he goes to bed.
The other positive is that Alan's brother(25 years older) had the same cancer 15 years ago and it's never returned. We don't know how far advanced the cancer was and his brother can't tell us as he now has fairly advanced Parkinson's.
I'd appreciate any positive feedback!
Written by
AlisonStobart
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Do not beat yourself up for how you feel, this is someone you care deeply about so it's not surprising.
That said, no point worrying about something you cannot stop, change or avoid so try and put it to one side, get counselling if you need Andover let your husband know you are finding it difficult but that you are trying to find ways to cope and go book something to do next year, book a meal at an amazing restaurant or something.
After my diagnosis and treatment I was a bit worried but Then I realised that I could be so busy looking at things that may happen I may miss the bus coming directly towards me so I consciously try and ignore the what ifs. I cannot control them, I look at the things I can do so I have something planned and booked all the way up,to aaugust when I get my fist annual scan, after that I am hoping travel insurance is cheaper so I can book a flight and go visit my brother in America.
Always here to listen if you want to rant about how crap it is etc some days are going to be black but please, please try and see the rainbow in today as well. It's not easy, it's can be very difficult but it is worth it.
Take care and find someone you can talk to and let your husband know you find it difficult but you are trying, he may surprise you as he may also be struggling and hiding it.
Now go book something for 12 months today, could even been a dentist appointment but think it would be better to have something to look forward to instead.
Your fear is perfectly normal. We all go through it (some more so than others) it is always there in the background. Every pain, cough, ailment, just brings it back to the front. Some mange it better than others (or appear to). Over time it does recede and get easier to deal with/manage.
All I can advise, is that you try to be as positive as you can, in the knowledge it will become easier to deal with. If he thinks you are getting down about it? That will add to what he is already having to manage and is already doing so, whilst trying not to alert you to his fears.
It sits very badly with me, that I was the bringer of so much carnage into my families lives.
I wanted it all to go away so that they could smile and relax and be "normal". Just as they were before cancer. I am now two years 'post op' and have still not achieved that. Things get better each day, but we are all very aware of how fragile life is for us all.
I guess, that most of us don't get to visit our mortality for so long and in such a shocking fashion. I had always considered that death for me would just happen. I would fall under a bus or, off a cliff - BOOM - gone and life would go on for everybody else. This is just so different, it lingers and gets into every thought and waking moment, and does so for so long. It changes us all.
I have opted to try and be better person now. Sounds very noble and righteous. I just figure if I can try and not do so many bad things and be more tolerant then that that would be a start. It helps me concentrate and not think about cancer all day and night. I fail almost every time I get behind the wheel of the car or dragged into a supermarket.
I am coming up to four years post op. The fear that the thing will come back hasn't gone away even thought they have told me that this is now very unlikely. My other half worries less than she did but still worries; of course. It's natural
Have you spoken to the OPA? Our helpline is there for you. It's on 01217049860.
Alison thank you for sharing this you are only human it would be strange not to worry and as someone in the same place as your husband I do.
You talk of a 1 in 3 chance of a recurrence. Remember the lifetime risk of cancer is 1 in 2.
So the chance of your husband having a recurrence is statistically less than you getting cancer . But you don't spend your time worrying about that and that statistic may help you worry less about him.
The fact his brother beat it must give you further reassurance.
What a wise friend to have, how well do I remember the thought of the cancer being consigned to a bucket. Your husband has been able to have surgery, which is all positive. Often what is not thought of is the enormous strain that the carers go through trying to get us over all the potholes and ups and downs in the road which are unpredictable. There are plenty of people who are in the same situation to talk to if it helps. None of us know the future and what it holds, never did I think that I would still be here looking back, given only 3yrs by the surgeon and now into the beginning of my 24th year, Travel with hope things look positive best wishes sally
Thanks to everyone who took time to reply. I'm very grateful. I'm more of an Eeyore type than a Tigger type so I have always had a constant battle with myself to keep negative thoughts contained. I am going to print off your replies and read them each time the negative demons start chattering away on my shoulders. As Bruce says, Alan has enough to deal with without me piling on more guilt through making it obvious how worried I am. Last year a friend asked if we would like to join in with a group of 10 to celebrate New Year 2018. At the time, just before Alan's operation last July, it seemed like an act of positive defiance accepting the invitation and paying the deposit. So thanks for the reminder Zantri. I will continue to make definite plans for Alan and myself.
Thankyou for posting, and highlighting the carers plight too, as I'm sure so many also share your thoughts and feelings.
My husband had the same grade as yours T3 N2, diagnosed last May. He suffered 2 internal bleeds from them, and had surgery (Ivor Lewis) in January this year, so we are still early into treatment.
Dave has suffered many complications (double pneumonia, sepsis, 5 weeks in hospital due to his digestive system going on strike, and scar tissue. He has had 2 stretches, but is still struggling to eat, so his weight is also suffering.
Like you, we have our days when we struggle, and are finding it difficult sometimes to move forward, despite trying hard to be upbeat and positive.
I guess all we can do is give ourselves targets, (as others have said), and try to take just one day at a time, and make it special, as we can't dwell on the past, and tomorrow hasn't yet come. I don't think fears will go away, but we have to try and push them to one side.
This site is full of kind and supportive people who understand what you are going through, and are always there to help.
Good luck, we will be thinking of you.
Lynn x
I do not think there is a magic answer to this. The whole process is not guaranteed for success, but it has been good so far.
You are doing the right thing in working out exactly what your fears are. I happen to think that talking to somebody about them is a good thing, but that is not everyone's solution. You could write them down in a private diary. Or on pieces of paper which you then, say, flush down the toilet to get rid of them in more ways than one.
It is not uncommon for patients and their spouses to go through some form of difficulties with each other after the treatment has finished, perhaps from overdoing things, doing activities before we are ready for it, risking the progress of a good recovery, being wary about confiding in each other because of not wanting to worry each other, and all of that sort of thing.
The carer invariably goes through an equivalent trauma with this kind of treatment, but not much attention is given to them. But do not underestimate the effect that it has all had on you. There is a kind of grief at the loss of your husband's health, and grief is the price of love, isn't it. So you have to work your way through that as best you can. Suppressing it all can make things worse in the long run. You probably have a reservoir of tears waiting to be released at some point.
I would always say that you are better to try and share some of your fears with your husband. He may want to do so with you because he will have equivalent fears too. And you do have a relationship to keep up, hopefully for many years to come. You do not have to be some kind of superwoman with enormous emotional strength to pull him through; you just have to be good enough, and my guess is that your husband is very proud of you for how you have coped. You are probably very proud of him for how he has coped too. So it probably is not a bad idea to tell each other that. It is something that you have got through together and have succeeded in what has been a great achievement.
Just like you and Lynn my husband had surgery and it was in May 2014 and it can leave the Carer feeling very frightened and difficult to be positive. The surgery is extreme but being able to have the surgery is an amazing positive as I do know two people who are not in that position. My husband wasn't able to have follow up chemo as half way through the pre op chemo he developed sepsis and I have to say that was a more scary time than the op. My husband does have his ups and downs and his surgeon has said the same regarding 2 years and 5 years but the best thing is to live for the day - certainly make lots of plans to focus on.I think in our position, and I have always thought this is that it would be great to chat to people in our position, talk about our worries and concerns because talking is so helpful. I like you have printed things off this site and often refer to them.
Hi being the patient i like to know how my family are feeling. They have gone through soo much and it helps not to bottle things up. My husband didn't' take the news of cancer well and has struggled for the last 18 months to go through everything with me, hold down his job and keep the house going. I had my op last March it was very complicated as i have another condition where my organs are not inthe same place. There was no knowing if i was going to survive the op. I got through this and post op chemo although finished early for developing reactions. I had another scare in March this year from a scan, but again we got through it. My husband has now decided to quit his job so we can bring forward the things we want to do later in our lives. He is only 52 so don't think he will retire yet. We can't plan too far ahead ,but live for today and enjoy whatever time we have left, hopefully a long time. Please speak to your husband he may have things he wants to say to you. Tell each other how well you are doing and keep being positive!!
We used an app called Headspace which did help us.
Good Luck
Debbie
Oh bless you Alison.
I can 100%relate to you from personal experience as the loving wife.
Can I recommend that you talk to your doctor about this. You need to have some support to understand and move on with this horrendous email experience your beloved husband has gone through.
Never Ever feel guilty about needing support or you will drive yourself crazy.
You went through the emotional trauma whilst your husband went through the physical trauma.
It is no wonder that you are strugglingcome come to terms with what has happened to him, your relationship and you.
There are Lots of us in your position and there is so much support out there Please be brave enough to reach out.
Sending you all the warm calming reassuring and understanding thoughts I have.
Take care Alison, you will laugh and smile again xx
2 weeks after my oesophagectomy my surgeon told me that he never says cure. He said it was a large tumour, that out of 48 lymph nodes removed 12 had cancer in them, but he was glad he did the operation as it relieved my symptoms! You can probably imagine how I felt. I did not think I would survive very long, and i still had the post-op chemotherapy to do.
Well, that was three and a half years ago, and I'm still here.
Go ahead and plan. I think surgeon's are a pessimistic lot. You say none of your husband's lymph nodes were infected. That's brilliant! Try not to let it worry you. Enjoy life.
Your concerns are quite understandable. But your surgeon was bound to point out the statistics on recurrence. I fear there has to be a degree of fatalism in coping with the aftermath of treating this deadly variety of cancer. Certainly that is how I and my wife and family attempt, not always successfully, to deal with that reality. I am coming up to 5 years since my surgery and am taking some comfort from that. But I confess that life is more tense than it used to be.
It has been almost 8 years since I had my Ivor Lewis ( In Australia ) . Things were not always smooth but I managed better I think because I have a very positive and supportive partner .
Wow Alison know exactly how you feel. Except my feelings like that were just over 4 years ago when my husband was dx'd with prostate cancer. I felt my world had been punched so hard it would never recover. My way of dealing with it was to obtain knowledge and be as proactive in every way I could to help the situation. My husband had a prostectomy and life went on and the fear gradually began to lessen with each PSA test that went by being undetectable. By the end of year 3 we both felt that we were at that point where we could allow ourselves to breath. 6 weeks later he was dx'd with upper GI cancer. Ops! Far more difficult to deal with. Not that Prostate cancer isn't difficult and can be a killer. However, the statistics and everything regarding timing of dx etc etc just all seem to read more difficult.
Cancer in the bucket is a very good way of looking at things. Counting blessings is another - no lymph node involvement is good. The fact the operation was a viable option is extremely good. Each clear scan from now on is another mark of success, a reason to breath just that bit easier.
My husband has a dreadful habit of saying 'I have cancer'. However, my daughter and I always correct him by saying he HAD cancer and that is now cut out and gone.
Will it come back? The answer is nobody really knows. A surgeon will always be cautious in his estimates because of medical facts and figures, because of the not having a crystal ball, because of not knowing how one particular patient will react or recover in comparison to another. We are all individual and some of those statistics the surgeon relies on will have had other underlying problems that didn't help.
How does all this help the likes of you and me? Positive thinking perhaps? It certainly can't hurt and many say positivity has a lot to do with being health and being able to overcome all sorts of illnesses.
Living for the day? Most certainly. Like the surgeon, none of us has a crystal ball either. Also, we are more likely to be run over by that double decker bus if our minds are elsewhere in worry.
Very seriously though. Plan for outings and treats. Makes the most of every day. Tell yourselves you've had one heck of an ordeal and you deserves to enjoy every single minute you can. Just make it count. The added bonus could be you are so busy planning and doing thing you don't have time to worry yourself into ever decreasing circles of fear.
Cancer or not. It's better to go out in a blaze of love and glory than to dwindle out in darkness and futility.
Hi Alison wow I could just change the name at the top and it's me !!! I always watched TV saying "why are they making such a fuss if ever that happens to us I will sit quietly with tears rolling down my cheeks elegantly" in reality when they told us my hubby had IT I sobbed rocking uncontrollably in the corner of the room, looking back they were more concerned about me than him.!! Joking apart I was exactly the same I spent my days between going to work and trying to be strong to going to my parents and sisters houses to let it all out. I tried to be brave in front of hubby and kids. Looking back I didn't do a very good job. Work were amazing and I could have as much time off as I needed. I went to the GP about 3 months in as I couldn't cope anymore and was given anti depressants and I am still on them 19months later. Things are good now hubby is doing well after 3 months chemo surgery and another 3 months chemo and he's just put on 3 kgs as we've been away for a week. I'm slowly getting back to near normal.
I saw some replies stating 2 years and 5 years are when statistics change what is this I've not heard about it we were never given any statistics.
Hope you soon start to feel better it's a long road but hopefully you will see the light at the end of the tunnel soon.
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