Hi, I've written a couple of times before regarding my hubby who is now two years and six months post Oesophagectomy. A few months following surgery in most things he was his normal self, although his physical strength had not returned and he did get very tired, which was understandable.
Then, a year ago he just seemed to give up on everything and was extremely low. At first the doctor treated him for depression but after several months of no improvement he was referred to a clinical psychologist who specialised in treating cancer patients. He explained to us that the reason my husband was like this was all down to the chemotherapy and the after effects of the surgery which effectively had changed his life. Because he didn't take things easy to start with to help his body recover it came to the point when enough was enough and his body shut down to force him heal.
Having these things explained was a great help to start with and slowly things started looking more positive. Now though, all is slipping back. He spends 80% of his time in bed, has no physical strength (which is becoming worse due to his inactivity) and just doesn't want to do anything at all, see friends, or go out. Also, he is so negative and doesn't even want me to do things to help out, He even seems to want me to give up on the things that keep me going.
This is taking it's toll and I just don't know what to do. It's like grieving for someone who is still alive. I don't know how to help him.
Has anyone else gone through this and is there hope please?
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carriagegirl
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I'm so sorry, I wish I could help. It sounds as if his physical weakness is making him want to just lie and think depressing thoughts.
I get very tired, and spend a lot of time on my bed, (I'm doing that now) but I always have my laptop open on my chest, which of course opens a world of interesting things. It gives a reason to want to go on, and suggests things I want to do when I have the energy.
Is it possible you could find something he's interested in on line, and put the laptop in front of him while he's resting? I realize it's not that simple, but you've got to start somewhere. Persuade him to look for something you need on Ebay, maybe he'll get hooked on it, as I am. I know what he really needs is physical activity, but first he has to find something he wants to do.
You really must think about yourself as well, you mustn't get ill and depressed. It must be so difficult for you. I'm sending you a E hug (if one can send emails, I suppose one can send E hugs)
I'm presuming the Doctors have ruled out any new physical reason for how he's feeling?
Thank you Jane. Unfortunately, he is not at all interested in using a laptop (he hates that sort of technology). He has always worked hard throughout his life and finds it difficult not being able to do the things he used to be able to do with ease. All I can hope for is that he will eventually get over this, it's just going to take a while.
I am pleased that you are doing well, and thank you for the hug.
I suppose that getting him to talk and to express his fears / anxieties is one if the issues that are important. And if it cannot be with you, then perhaps a counsellor, perhaps one at one of the Maggie's centres / equivalent? And it might be good if you want along as well? 25% of cancer patients need some form of talking therapy after their treatment, and 10% need medication for a form of depression as well, so it is not that unusual. But you yourself need to be strong and to cope with the difficulties as they have affected you as his carer, and I think you do need to be firm about that.
If he does not move about he will lose muscle tone, and it might even be that the right sort of physiotherapist might help.
It sounds as if he is depressed and that the depression needs treatment / action as a separate issue from any diet / eating problems. I would also check on basic things like vitamin and mineral levels as lack of iron / vitamin B12 can have an effect as well, although perhaps marginal in this case.
Thank you for your reply. The clinical psychologist has explained things very well to us and it is more a problem of severe fatigue rather than depression. He has had is blood checked and all is OK. I'm sure he will get better, it will just take time.
Fatigue is indeed an effect from this treatment, not least because the lungs have often had a bit of a bashing from the surgery and sometimes infection. Sometimes it is very small steps every so often that make the difference over time.
I've had this surgery 10 months ago, and I'm now well on the mend. There were times, though, when I really felt like giving in as I just didn't seem to be getting better. However, I couldn't bring myself to give in and let this thing beat me, and what I've written below is the way I managed to snap out of a downward slide. This is something I wrote during one of my many visits to hospital at the time:
A Lonely Place
Illness can be a lonely place. Even when there are people all around you; some working; some visiting; some being ill, maybe trying not to die, and some just passing by, it still comes down to you and your illness. You are being defined by it. Never mind what or who you may be, that doesn’t matter anymore. You may have loved… and been loved; you might have travelled the world; you may or may not have achieved great things; perhaps you’ve made children… you may be a child; you teach?; you look after the sick?;
None of this matters.
You are living in the land of the unwell, and the landscape is bleak. Colour has drained from this infertile soil. Nothing but pain and sickness grow here, watered by tears of helplessness, shame, even rage. Rage, though, is good. Be angry. Be angry that this illness, interloper that it is, is rewarded should it serve to diminish you
Rage and anger will anchor you here. For a while. If you can fight it, then do so with all the force your will can bring to bear. This ‘life force’ is inside you and it is a very powerful thing. It is your ‘will’ to live and get well that will see you home again. If you don’t or won’t fight it, this illness will maroon you here in this barren land until your will is forgotten and you slide away into the realm of darkness. Use your anger and your rage… scream if you must… but fight for it, for ‘your’ life, and keep fighting until the deed is done. It’s your life after all, and who knows, it may be the only one we get.
Don’t let this thing define you. You are not your illness, you are a person who has an illness. Be that person… not that illness.
I really feel for you carriagegirl, and I know from my partner's experience how much this hurts, and the toll it takes on your own reserves of will. My turn-around came quite suddenly one morning, when I had had enough of feeling sorry for myself. My 'Positive Mental Attitude' had gone missing somewhere along the way, but this day it returned, unbidden but very, very welcome.
So yes, there is hope carriagegirl, so don't despair. Remember too, to look after yourself. If you're the only one with a positive outlook then that's the way it is... just make sure you hold on to it, and hopefully, pretty soon, hubby will join you there.
Remember also that this is not your fault; neither is it his. The whole thing is a very traumatic experience that some of us, patients AND carers, recover from relatively quickly, others less so... but that PMA is the most vital component to recovery.
Spot on, It's like grieving for someone but they're still here. At the moment I cope by doing my own thing, there are times I feel a bit guilty about this but it helps me. I know in time he will be back and we can once again share our lives together.
I really do sympathize with what you are both going through. I went through four years of hell with depression after my oesophagectomy which just crept up on me without me even realizing it. I too didn't want to do anything or "couldn't be bothered", I hardly ever talked to my wife and was totally unaware that I was behaving like this. My GP did refer me to the local Mental Health Team. I had an awful time finding an anti depressant that worked for me but eventually did. The thing that helped me was finding a really wonderful counsellor, she worked with me for about 18 months and at times I wondered if I would ever get back to normal, but now I am almost back to my old self. I don't suppose I will ever be 100% better but I will sure settle for where I am now. Incidentally the best bit of self help I used was going out for a walk every day no matter how bad I felt. Also my wife suggested that we get a laptop and at first I had no interest in it but over a period of time I started using it and it really helped. I know it will be difficult but if you could try and persuade him to take that first step it may be a great help. Honestly there is light at the end of the tunnel. I wish you both the very best and will be thinking of you.
Thank you for your reply, it has given me a little hope. He was on antidepressants for some time but although his GP tried different ones they made him worse. Since he stopped taking them he does seem a little more responsive to somethings. At one stage he was going for short walks but he's now given up on that. The thought of him using a laptop made me chuckle, him and technology just don't go together. His first mobile phone went out the window :D.
I am glad you have recovered and back in the land of the living, so to speak.
I am nearly 3 years post op. I too, was 'fine' at first but it would appear that the 'trauma' of the chemo and op and associated problems finally caught up with me and I entered a bout of depression , something that I've never had, all these years, despite my pressurised job.
The prescribed drugs seem to have helped and I am fighting back from this negativism that sets in. I have also had counselling and I believe that my Christian faith which reminds me that we are living in a fallen, imperfect world with wonderful things to come....one day. Prayer and trusting in God has helped enormously I am pleased to say that it has been turned around.
Please understand that it is often the 'norm' to become negative and depressed, you just need the tools to fight back. Once you gain the ground don't slip back. Get out of bed and set yourself goals. Walk to the śupermarket, I study on an internet course and have to respond to questions over a set period... Do something that you like... Watch football or go to the Lake District but do something !
My best wishes and I hope things can be improved. We must all thank our God for each day that He gives us. Each day permits us to do something to improve ourselves, the world around us and especially to still be with our loved ones and reciprocate the love and thanks for all they have been through while they have been standing by.
Taking PPI's can deplete your magnesium levels, even although your blood serum levels for magnesium can appear to be normal. Your GP might say your magnesium level is normal but the blood serum level is not at all reliable (99% of your magnesium is in your cells). Depleted magnesium will cause low energy levels as well as have an impact on your nervous system and emotional wellbeing. Try taking some magnesium spray (taking as a spray is best way of getting in system rather than tablets). 5 sprays on each thigh of an evening would help. You can get magnesium spray from amazon, costs about £9 and would last about 6 weeks. Let me know if you want link.
Also people who have had op tend to be low in vitamin B12 (you need acid in your stomach to absorbe B12). Many people have been treated for depression when in fact they are just have low B12 levels. Again taking a good quality B12 supplement could be very helpful. Look for a tablet / lozenge that you dissolve under your tongue.
I'm sorry that things appear to be so tough at the moment, I do know exactly how you and your husband feel. This reply needs to be about you and your husband but, to be able to show that I understand your position, I'll describe, as briefly as I can, the last four years of my life.
In August 2010 my Mother passed away at the age of 82. Up to that point she had been one of the mainstays of my life, and I had the unenviable task of giving the doctors the go-ahead to turn off her ventilator.
In 2011, when my two boys had just reached three years of age, the doctors said that a swallowing problem that I'd had for a while was in fact Barrett's Oesophagus. This diagnosis was very shortly changed to Oesophageal Cancer. I was told that if it was left I would probably last around two years, but that a course of chemotherapy, followed by surgery to remove the area that contained the cancer, would vastly improve that number.
At the time I was a director of a small company; a job that I really enjoyed, and one that provided well for myself and family. The company had a number of problems brought about by the recession, and the timing of my illness couldn't have been worse. I managed to work through the chemotherapy, though it did get a little difficult when my hands and feet swelled up, and the skin started falling off. I later found out that the chemotherapy had no effect on the cancer.
In May 2012 I went into hospital for what was described as a long, but hopefully simple operation to remove part of my oesophagus, and an equally small part of my stomach. From what I can remember when I woke up, everyone appeared to be fairly happy with the surgery. Later that day though I was told that there had been a leak, and that the remains of both my stomach and oesophagus had become infected. It was described to me that I needed to have both completely removed, or within a short space of time I would be exiting the hospital dead. As I was on quite a bit of morphine at the time, I was quite happy to give my permission for the surgeon to do whatever he needed to do. I didn't know it until later, but the surgeon also rang my wife that night, around 10.30 pm, in order to get her permission to operate before I got too ill.
During that first week of May 2012 I had three operations; the second to remove what was left of my stomach and oesophagus, and to this day I'm not sure about the third. At the end of that week I was on HDU, with more holes and future scars than I could believe, and a hole in my throat which was created so that I could at least get the sensation of drinking something, even if it went nowhere other than into a stoma bag.
Once I got out of HDU, and onto a ward, I was able to get my laptop brought in for me. Although I watched quite a few films, I was also able to start doing some work too. Many people thought that I was mad to actually be doing work, even if it was only a little, so soon after such major surgery. To me it was my lifeline, the knowledge that I was still able to do some of my work, and be able to provide for my children.
I looked a bit of a state when I got out of hospital. I was fed via a tube straight into my bowel, and if I went out anywhere I had a special backpack to put my 'yummy' gunk into. Before going into hospital I reached a weight of 16 stones. Following the surgery I went down to around 11 and a half stone, and have never been above 12 stone 5 pounds. I was never a person with massive muscles, but now they are very small, and carrying anything heavy over a distance is very difficult. One week after getting home I started working from home, doing many of the things that I would normally do at work. It wasn't ideal, as I had no way of controlling anything properly, but it was the best that I could do, and it at least gave me the satisfaction of knowing that I was achieving something.
In November 2012 I went back into hospital for my fourth, and hopefully final operation, to reconstruct my food pathway. This time everything went fine, and once things had settled down, I'd be able to start eating again. As with the first stay in hospital, I was able to get my laptop in and start doing work; I feel that it helped with my recovery.
I was able to eat again, but I wasn't prepared for the way that my new 'plumbing' dealt with eating. Strangely enough I still have difficulty swallowing sometimes, but I think that's just to do with the way that my tube goes around my collar bone. The toiletry consequences of the surgery have had far greater effects on me and my family. To put it as politely as I can, food passes through very quickly and, with no stomach to aid digestion, diarrhoea is a constant companion. I can take imodium if I want, but all that does is causes constipation, and means that anything that I eat afterwards just stays there and causes significant discomfort. I'm not sure if this is something that I will ever truly get used to, but it's a system that works, and allows me to maintain my weight. One thing that causes me a lot of problems personally is odour. Again, to be as polite as I can, because what I eat isn't digested properly, the many visits to the toilet leave a lingering smell that I quite often feel ashamed of, even though I know that there are no alternatives, and is not my fault.
I returned to work towards the end of 2013. With the help of my co-workers I was able to arrange the offices so that I was virtually next door to the toilet and, in that way, I was able to work in the region of 40 hours per week. I had my own microwave, and was able to eat what I wanted, when I needed to. I'd reduced my hours down from what used to be up to 70 hours per week, to a much more manageable figure; though I still got tired. Without going into all of the details, the company unfortunately went into liquidation in February 2014. From a position where I had the satisfaction of knowing that I was contributing to the welfare of my family, I went to claiming employment support allowance, with a strong possibility that we might lose our home.
Please accept my apologies for the length and detail of the above; believe it or not there are a number of things that I've left out. I'm just trying to provide an indication of the past few years so that you might accept that I understand both yours and your husbands situation.
I suppose everyone deals with situations, especially very difficult one's like cancer and surgery, in different ways. I believe however that we all enter the chemotherapy and surgical paths for the main reason of staying alive for as long as possible. Although our reasons what wanting to live may vary, I believe that if we really didn't want to live we would not have chosen to accept the treatments.
I have to admit that I, especially since the loss of the company, have days when I'm depressed about the whole situation. There are days when I'd like to go out and scream at the top of my voice about how unfair the last few years have been. There are even days when I wish I'd just not bothered to have the surgery, and accepted the natural outcome. But there also days when I think, I love my family, I really want to see my children grow, God that is a beautiful pint of beer; the list is probably as long as this piece.
So I carry on. I tried applying for jobs in management accounting and administration. I believe, though the job centre doesn't really agree with me, that I'm right to include my health issues on my cv. The unfortunate consequence to that is that those replies that I've had back have been negative. One actually used the excuse that because I didn't take exams back in 1979, I wasn't eligible for a position as an assistant management accountant even though I have over 20 years experience.
And still I carry on. I'm now trying to set up a small 'work from home' business researching people's family histories, and creating family trees for them. So far I can't say that I've had a lot of success, but I need to try.
I can't say that I blame your husband for wanting to lay in bed for most of the day, I'd be lying if I said that I didn't feel the same some days. I can't blame him also for being depressed; our situations aren't exactly the most normal. I would say however, that your husband needs to be kinder to himself, and accept the new him. I look at myself now and think, I can eat more or less what I want (in small amounts), when I want, and I'm not going to put much weight on - how many people can say that? There are positives if you want to look for them - they may be very well hidden, but they can be found.
Best wishes to you both, and my thoughts are with you.
Your post and the responses reflect much of my experience since my op two years ago. The fall-out following the chemo, invasive operation, anaesthetics etc is still not fully understood and I believe that most of us do suffer suffer significant mental trauma without fully realising it at the time. I have had long periods when I have simply not wanted to 'do anything' and I have been so negative towards those dear to me. Only now am I starting to feel a bit more positive. This has coincided with returning to part time work and giving myself a sense of worth. I am 63 and had expected to have retired by now but I now feel that this would be a bad idea as I would slip back into an apathetic state. When we go through the treatment and surgery we need to be quite selfish as part of our drive to survive. When we come out of it I think we might understandably draw breath and 'enjoy' being cosseted. It is difficult to emerge from this partly because we are weak and diminished for a prolonged period. I realise I am not offering a solution but hope that your husband will feel some comfort in knowing that he is not alone in his experience.
I have just enrolled for adult evening classes in Mindfulness, partly as a diversion but also in the hope that it will assist in my mental recovery. Perhaps something similar might just provide a spark for your husband?
I hope your husband is improving I am now 4 years post op and this is the first year I feel my brain has worked.
I still get down and still take to my bed for a day to get my strength back. I also take iron and vitamin supplements and have learned to listen to my body and rest when I need to.
In the beginning I volunteered spoke to a cancer counselor and did a counseling course my self as well, I changed career and spent alot of time feeling worthless and wondering why we went through everything to end up as I did. I felt very guilty that I had A survived and B was not out there doing all the things I had been able to do before. My motivation was non existent.
But there is light and it took a lot of false starts and encouragement to get me where I am now, I have stopped looking for a full time job and accept part time. I took up a hobby and it has helped me find bits to do and I am trying not to compare now with before cancer as My life is so very different but alot of it in a good way. I have had to rethink my values and expectations and I have not downgraded them just changed what is important to me.
I now can accept people saying I am looking better and that I am over cancer, just not when they say things are getting back to normal, There is a new way of life the old one has gone and I have had to grive for it, I do sometimes still miss it but then there is alot of new experiences out there to look forward too.
Thank you Lizzy. I am so pleased that you are adapting to your new life. My husband is still struggling but a glimmer of light today - he drove for the first time in almost a year, this was a very big deal for him, especially as he used to be a HGV driver and had his own truck. Small steps and he will get there.
Seems all i read here is 4 years old posts. maybe no one looks here anymore I don't know.
My suggestion is get a puppy lol. We got 2 new ones in our lives and it helps me to take care of them during the day and its great to have them as companions. Even if im feeling down I still smile everyday watching them play. I had an esophojectomy 2015 and things can get pretty dire at times... is it really worth the effort!?
Tsuzuki, yes dogs and animals are a wonderful comfort. Dogs, cats, goats and horses are a big part of our lives. Unfortunately, my husband passed away in June 2015. Those animals keep me going now.
Thank you Tsuzuki. I'm okay, it's tough but as I say, I have the animals to help me through. I hope all continues to go well for you, and those two dogs of yours. x
Hi I am so sorry to hear of your situation. I know from personal experience how hard it is. My husband has an IL in 2012 and struggled to recover. I think it must be difficult to accept that nothing is likely to be the same as it was before. Some people are less likely than others to accept this, as was my hubby. The question we have to consider is, would we want to live with a lower quality of life? Yes we think - you are still alive, please try to appreciate it and make the most of it. My hubby says he is in pain and struggles to get through the day - he sleeps a lot. Which always leads me to wonder if modern science is always quite so good. I am sure there are others that have recovered far easier and appreciate their treatment, however I suggest that some are less likely to help themselves, which is a great shame and extremely painful for those who care and are witness to this. I often wonder if it had been myself in that position how I would cope, or even if I would go through this turmoil...........unfortunately I have no advice for you other than be strong and don't forget to think of yourself. Big hugs xx
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