Oesophageal Patients Association

Here we go again

On January 9th 2012 my husband was diagnosed with esophageal cancer. Following numerous tests he had an Ivor lewis keyhole op which resulted in the addition of a good part of his stomach also being removed as the cancer had spread further than originally diagnosed. It has been a struggle to say the least, he is a stubborn man and insisted on leaving hospital before he should have, then had 3 bouts of pneumonia and then a further op for adhesion's to the intestines about 4 months later which almost led to his death. As the diagnosis for the latter took so long he lost a lot of weight and could hardly hold his head up when he was discharged from the hospital. He isn't one for sitting around and gradually got himself back into full time work driving an HGV around the country. Unfortunately this year we have had symptoms of its return which has resulted in the diagnosis of a tumour at the junction of the esophagus which namely a `adenosquamous carcinoma' which according to google is difficult to diagnose because of its nature and quite rare. Unfortunately I feel that he hasn't helped himself , my opinion is that his lifestyle contributed towards his original diagnosis which didn't improve. I cant help but be puzzled as to why he didn't value his life enough to change his ways and aim to improve his health. Now he is informed he needs to be tube fed to bulk himself up prior to chemoradio therapy, unfortunately he has refused that but will proceed with chemo very soon. Im unsure of the outcome but know that its going to be another struggle, sometimes its difficult to be positive.

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Hi Jestjules,

I'm so sorry your husband's cancer has returned. I can't even begin to imagine how you must be feeling. My husband has only recently been diagnosed and has just begun chemo.

He is proving to be a reluctant patient (which I can understand), but more importantly, also reluctant to listen to me when I urge him to drink more fluids and eat more of the liquidised food I prepare. I, too, get frustrated (and at times, I admit, rather cross) because I feel so helpless. I suspected these are the same emotions you are feeling. We want them to work with us (and the medics) in keeping up their strength as much as possible for what lies ahead.

Then I have to remind myself that he's a grown man and it's his body. Even though he has this awful disease, there's nothing wrong with his mind and he's still entitled to make his own decisions. Even if those decisions are not the ones I would have made, they are his - and I have to respect them and him.

This is probably not what you want to hear but - believe me - I do empathise with you. My husband is a stubborn man (as yours appears to be), and I have to admit that I admire the way cancer has not changed his inherent personality.

I'm not trying to dole out platitudes. We are just beginning this unwelcome and unwanted journey - and already I can feel myself getting short-tempered and cross at my husband and indeed others when things do not go according to plan. Already I'm tired - of coping, of putting on a cheerful face and of doing everything around the house because my husband can't help as he used to. Does that sound selfish? Probably. But then I remind myself (as should you) that I am only human, no longer the woman in her 20s/30s who brought up 4 sons, lived all around the world and had boundless energy (although I admit, not patience!!).

Be kind to yourself. You are allowed to feel angry and frustrated - as well as weak and tearful. This forum is a great place for "sounding off" and reaching out to others who know exactly how you must be feeling.

Thinking of you both and sending a virtual hug 🤗.

Best wishes, Kate x

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Hi Jestules ,

I really am so sorry to hear the cancer is back , not a diagnosis anyone having IL surgery and their families ever want to hear. My husband had IL this year and is stubborn too.

I sometimes wonder if stubborness in this case is not helped by the difficulty in accepting a completely new way of life and it's restrictions, and trying to return to "normal", which for most of us doesn't happen!!

Positivity is such a hard thing to do as a partner and as so many of us know, frustrations hard to cope with (especially where eating is concerned.

I can't add much more than Kate has already said except take one day at a time and try not too look too far ahead. Our thoughts are with you both ~ please let us know how treatment progresses.

Lynn xx

Kate ~ you are very much in our thoughts too ~ it;s not just the patients life that changes, but the carers too!!!

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Thanks Lynn,

You have described things so well. I, too, don't want to accept that life will never be as it was - for either of us. I guess that will take time - even though I really have difficulty coming to terms with it all.

I'm so grateful for this forum as it allows us to exchange experiences and express emotions that I, personally, would find hard to share with my nearest and dearest.

Best wishes, Kate x

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Thanks for your reply Lynn its encouraging to know that we are not alone. Friends and family offer their support but unless you have been in this position it is very difficult to empathise. If your husband looks after himself he is quite likely to get back to a relatively normal life but he will have to be sensible and learn to have a healthier approach to life. Take it slowly and you will get there.

Take good care x

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Thank you so much for your reply. I feel selfish for being cross with him but knowing that I am not alone is a great help. You are so right that although they act like children they are adults with minds of their own. In a rather ridiculous way refusing to eat and drink as much as possible appears to be a sort of control thing I guess, it was and still is the same here. The excuse that he doesn't like water infuriates me! Having watched the struggle he had previously I doubted that I would be strong enough to endure the treatment he had. I just get so irritated that he wont help himself as much as he could but groans in pain and refuses to take pain killers when he could be helped. Im not positive of the outcome but know I will have to be strong, Its extremely difficult to try and carry on as normal as possible, to take his abuse and convince myself its because he is scared but hey ho, I will stand by him and be there if he decides he needs me.

I sincerely hope that your husband will appreciate the effort form everyone trying to save his life and appreciates life once he is though his long haul ahead. Be strong, I know its difficult but you can do it and ......we are all allowed a melt down or two.

Sending a huge hug back

Good luck x

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Hi Jestjules,

Don't feel selfish at being cross with him - in fact don't feel selfish at being cross full stop. As I've already said, we've only just begun this awful journey and I'm already feeling tired, grumpy, cross and frustrated! Lord knows what I'll be like 6 months down the line. I just wish I could wake up and find it's all been a dreadful nightmare! I know it's not though and I know I've got to get on with it and support him through this as best I can.

It's certainly not helped by the fact that we have no family living close by - they are scattered far and wide, although they are being as helpful and supportive as they can, given that they all have jobs and families too.

Still, I keep telling myself that it is what it is, the situation isn't going to change and we've just got to get on with things as best we can. So, enough of my moaning!! I was trying to lift your spirits!! Enough of my self-indulgence!

Thinking of everyone out there going through the same awful disease or caring for someone with it.

Best wishes to you all, Kate x

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I completely understand and relate to your exhaustion and anger, it wont get any better for a while but be positive it WILL get better BUT it will take a while and required patience..........or vodak in the kitchen cupboard lol or both.

I did wake up once.......after the first diagnosis and thought I had had a bad dream and then reality kicked in. Reality is crap isnt it. We all need to support one another and i am really glad of the contact it is really appreciated.

I come into work to escape the reality and reluctantly go home to the gloom at the end of the day, maybe its my way of running away from reality well that and eating chocolate, the diet can wait!

Please Keep in touch Kate we can help each other, iv been through what you are going through, if you want to moan feel free, If i can help in any way just ask.

Julie xx

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What can i say other than i'm sending you big hugs and love over the ether.

Steve

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Thank you

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I'm on facebook if either of you want to chat on private message, it's sometimes more private. It's always nice to be in touch with people who TRULY understand, and also nice to be able to bounce off their good days too.

No pressure, but if anyone looks me up, I'm the one with pictures of greyhounds on as we help with the rescue. xxxx

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Thanks Lynn I will look you up. xx

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Thanks Lynn, I will too x

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I cannot really add much to what others have so wisely said, but I have a couple of thoughts.

The first is that developing cancer might, by some arguments, have some contributory factors like lifestyle - and driving a lorry is probably one of the occupations where stress, posture and lack of opportunity for physical exercise might increase the chances of illness for some. But it is not as simple as cause and effect, and one chooses a job and gets on with it. We want to recover and get back to where we were before. Stubbornness is another side of being single minded and determined but this cancer business (and recurrence) is a rotten chance from the throw of the dice rather than anybody's fault. We have to deal with it in our own individual way.

Recurrence does occur in cases where people adopt really healthy lifestyles. We never know what may, or may not have happened if only... if only...

Secondly it is a rotten prospect to have to relive the cancer treatment with all the bleakness of it all, and it is perfectly normal to feel angry about it. Where that anger gets directed is something that we do not really have control over. But there are many hours when he will have been at the wheel of his lorry thinking things over (or deliberately not thinking things over).

It is a hard thing, and a culmination of both your fears, but you will both have to face the treatment, again, and somehow you will have to work out a way of doing this, and for better for worse you are in it together, but you know this already of course so it may not be much help.

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Thank you

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Hi Jestjules ,

I am so so sorry to hear your news ,you must be utterly drained and devastated. You may have read , my husband Tony had IL keyhole Aug 24th and now having post op Chemo. Ever since his op he has had repeated dilatations as the lumen closes and he cannot swallow ....today he had his 5th one ...each time it closes right up and I get so upset and down about it. I’ve even made myself ill with stress and been off work. I hate the whole damn thing, the constant worry about his awful weight loss the swallowing the dumping syndrome, the knowledge that I’ve lost the man I used to know and am ‘forced’ to accept our new normal! And most of all the fear of it returning!

Most days I can carry on with work and put a false smile on my face and convince myself and others that all is well , but what I really feel like doing is ‘screaming and throwing things’ ....wont make the slightest difference but may make me feel better for a short while. It’s like being a part of some sick nightmare that I cannot wake up from.

We cannot sadly change these awful situations, your husband may still have had this recurrence even if he had totally abided by the specialists opinions. I know how you feel, there are days when I’m sick of feeling like I’m married to an ‘old man ‘ and like his carer and I get irritated and we niggle about things where we never before ,even after 32 years of marriage! Easy for me to say but bite your tongue ( I’ll try too !) you both need each other’s love and support even more now .xx

Keep in touch , I also regularly text Lynn x

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Oh Debbie I am so sorry but can totally identify to everything you say. What annoys me more is that, in my experience, men don't consider their health until it's too late and then we become their careers, and having to accept a life that we have very little control over. My husband went for chemo yesterday but hasn't even told me he went. I only know through other, I do know he has been told that if he continue to smoke the treatment won't work, as I look at him now....guess what....he's smoking,. Of course he knows best! I despair. It makes me wonder if all this modern treatment is as marvellous as they think, for some maybe but one thing I do know is that you have to willing to help yourself. Contact me anytime, a good moan helps.

Julie xx

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I think it is relatively normal for spouses to shield each other from their fears and to try and protect each other from what they think might be happening. It is not the ideal way of sharing the journey together, and sometimes it takes a bit of a crisis before things get better in that direction. But it is hard to achieve.

We do not recover at the speed we would wish, and this makes recovery difficult and puzzling, even without the thought that a fag might be the one luxury one cannot do without, and sometimes a suspicion that perhaps the whole thing will not lead to a cure anyway. And it does take a lot of energy to do anything - anything, let alone giving up smoking.

I do think spouses and carers need some kind of outlet to let off steam as it is the most frustrating and difficult thing of all, and without recognition.

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Hi I am 7 years down the line and as an ex patient and not a very compliant one at that. I can see now how awful it is for the careres who try so hard to help and entice us to eat and do what is good for us, I hated having liquidised food, even when it had all been individually liqidised. I wanted real food. Life does change and it took me a long while to accept it I still get annoyed at myself sometimes when i cant do what I used to find so easy. I am sure it not that he dosent value his life, its could be more that he doesnt want to feel less of a person than he was before, and wants things to go back to how they were, it is difficult to get your head round things. I felt inadequate for ages, (not sure inadequate is the right word).

My buddy who had the same treatment is also an HGV driver, I think the pollution had a bit to do with me and him getting ill, we lived in a very industrial area.

Lizzy

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Thank you x

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Hugs xxx

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