Hello
My husband (aged 72) was diagnosed with cancer at the junction of the stomach and oesophagus in May. He started FLOT chemo in July and has the 4th dose (if bloods ok) tomorrow. The 3rd infusion made him more tired than the previous two and he just felt like sleeping between the 3rd and 8th day, not really wanting to eat much and everything tasting "horrible". For the last few days he has started eating quite well and we actually went out to a friends house for tea. He is dreading tomorrow and wonders how much worse the 4th one will be. He has a scan 16th September and then surgery in October. His main worry at the moment is how can he ever cope with 4 more lots of FLOT after surgery! Is it much worse that pre-op? As his wife I feel quite helpless sometimes - if only I could find foods that he might want to eat. He is also unsteady at night sometimes and we have had some accidents not quite reaching the bathroom. For a proud man this is really undignified and he feels terrible that I have to deal with it. If there is anyone who has been through this and can share their experience it would be so helpful to me.
Hi and welcome to the online community
I'm sorry to hear that your husband has been diagnosed with oesophageal cancer and that the FLOT treatment is making him unwell. It's natural that he should worry that he won't be able to cope with more after his surgery and also for you to want to do as much as you can to help him.
I didn't have this type of cancer, so can't share any experiences of oesophageal cancer with you, but I noticed that your post hadn't had any replies yet. I've had a look through the older posts and think that this thread might interest you especially the reply from Anon613 as he has had FLOT both pre and post surgery. You could reply to his post and ask him further questions if you wanted to.
It might also be a good idea to start a separate post in this group asking for ideas as to what foods people with oesphageal cancer find easy and tasty to eat.
Could I also suggest that you join the carers group which is a safe and supportive place to share your worries and emotions with others who are looking after someone with cancer.
If you'd like to join just click on the link I've created and then choose 'join this group' on the page that opens. You can then introduce yourself after selecting 'start a discussion' or join in with existing conversations by clicking on 'reply'.
Finally, when you have a minute it would be really useful if could pop something about your husband's journey so far into your profile as it helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
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Hello Freyja, I am so sorry that both you and your husband have found yourselves having to deal with this awful condition, although my husband is a bit younger, he is 60, I think they are both at almost the same stage treatment wise, my hubby has recently finished his 4th treatment of FLOT, he too found each treatment more gruelling than the last, I hope he has been given all necessary meds to help combat side effects. He suffered bouts of constipation, followed by extreme runs, chemo made swallowing food difficult, which was tough for a time because he hadn't really suffered from this even before diagnosis. He also had pain in his jaw when eating and was very sensitive to anything cold, he wore gloves to help with this and avoided anything straight from the fridge. He made sure he was drinking at least 3 litres of room temp bottled water. He drank protein drinks and complan drinks when he couldn't face food and I made sure he ate what ever he wanted, when ever he wanted, so we always had lots of snack foods available, because if the food wasn't ready very quickly we found his appetite would fade again, (hope that makes sense to you). Fresh fruit smoothies, made with either full fat greek yoghurt or coconut water, fresh veggie smoothies, homemade soups, all went down well. I also found that ginger and turmeric shots helped to settle the sick feeling in his stomach. Believe me I understand that helpless feeling, seeing our proud, strong men suffering like this is truly heartbreaking, but stay strong, there are many people on this site who give great advice, so ask away. Sending my very best wishes to both you and your husband XX
Hello Luv Chox
Thank you so much for your reply. I am so sorry to hear about your husband too and that we are not the only ones having to deal with this horrible disease. I found all your suggestions very helpful. My husband is beginning to feel the effects of chemo (was on Thursday). He is glad to have stopped the steroids as they make him have constant hiccups. We have a date to see our oncologist 18th November, no date for surgery yet but I suppose we will know more after the scan on the 16th September. I have found that sweet things are quite helpful. Yesterday all that my husband could eat was treacle sponge pudding and custard! I too make home made soups with as many veg as possible. At this moment in the day roast chicken sounds appealing with roast potatoes but I am glad that he eats anything. We have started to plan a few things for three/four weeks time. Maybe go to London to see our daughter (we are from Devon). I will wait though to see if it is not too tiring. I you feel like a chat or let me know how you are doing I would be very happy to hear from you. Take care both of you Xx
Good Morning Freyja, My hubby had his last chemo before surgery on the 1st August, the two weeks following this were tough on him, in fact he is still napping throughout the day, but his appetite has returned and although his meal sizes are smaller, he is able to eat and drink as normal. My husband also comes from Devon, it is a lovely part of the country, we now live in a small town close to Cambridge, which is quite peaceful, but not as picturesque as Devon. I hope you are able to enjoy the sunshine this Bank Holiday, please ensure you take good care of yourself as well as your husband, maybe even try to nap when he does, housework can wait, your health and wellbeing is so much more important. Sending you both a virtual hug XX
Hello Luv Chox
How is it going with your hubby? I hope you both managed to enjoy the lovely sunny weekend. It's a week since the 4th chemo now and that was definitely the worst. My husband is beginning to eat a little more widely than custard and rice pudding but only small amounts. He just wants to doze and watch quiz shows! The worst this time round is the diarrhoea. We probably have shares in Imodium! I am sure you are right about looking after yourself. I am so tired with disturbed sleep and waiting for the next crises. I keep saying to myself I am not a trained nurse but I will obviously do what I can to make my man as comfortable as possible. He says that I should carry on working as much as I can (I manage the town's museum collections). Luckily much of my work involves research which can be done from home, so not in the museum itself. It is a good diversion but sometimes difficult to concentrate. If all goes well we have planned a small outing next Thursday which would have been the chemo day. I find that time sometimes seems to stand still and it's quite lonely not having someone around who is normally quite active and chatty.
Take care both of you
XX
Hi Freyja, Lovely to hear from you, so much of what you say rings true with me as well. Your work sounds very interesting and I agree the diversion from all things cancer related would no doubt be beneficial for your well being, but like you I also find it difficult to concentrate on anything else, even reading a book is impossible, I find magazines and trashy tv works for me, sort of chewing gum for the brain !! I hope you are able to enjoy your outing next Thursday, I expect your husbands energy levels and appetite will have increased by then, fingers crossed for you both. We received some good news from the hospital today, the chemo has shrunk the tumour, it hasn't disappeared but the fact that the last few weeks of suffering haven't been in vain is such a relief. So all in all, a good day. Have a wonderful weekend XX
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