Aftercare

Hi Coco,

My husband had his operation at the beginning of December. He came out of hospital a few days before Christmas with a bag full of medication and Ensure drinks along with instructions to have a pureed diet.. We had  3 visits from district nurses to check his wound and remove stitches. His consultant rang him to check that all was going okay after a couple of days and we had a follow up clinic appointment 2 weeks after discharge. I've also had a lengthy, very useful phone conversation with  a dietitian because I was having difficulty persuading my husband to eat or drink.

We are both mobile and prior to the op had no care needs so knowing that there are people we can contact if need be has been sort of sufficient for us. The last district nurse who came was keen to book us in for weekly visits, but we didn't bother because chemo will be starting again very soon so we'll be seeing them weekly then.

I suppose it's difficult to know what will be needed until after the op and every case is different. Be assured that no one wants things to go wrong after investing time and resources into your husband. If you feel that you may need particular support, ask for it. We have been given contact details for a named specialist nurse and she would be my 1st port of call if I was struggling.

Please feel free to ask me any specific questions and I'll try to answer them. Remember to take care of yourself so that you can do your best for your husband,

Tiny xxx

Thanks for that info Tiny. 
I realise there’s no one answer but must admit I feel very uncertain as to how much I am going to be dealing with. Eating is obviously the big issue, but also wondered how mobile he will be. We don’t have a bathroom downstairs, will he manage the stairs easily or is it likely to be a huge effort ? Wondering if we should sort an alternative out ? 

Hi Coco,

My hubby had to show that he could manage stairs before he was discharged, he was taken off the ward by a member of the physio team on a couple of occasions to see how he got on with a flight of stairs between 2 floors of the hospital. Once he was home he took the stairs (and everything else) slowly because he was weak, but his stamina is improving now that he is eating better.

Thank you Tiny. It’s helpful to hear someone else’s experience. 

Hi Coco, I was 57  when I had the Ivor Lewis surgery in October 2016 and had lost a lot of weight. I had a jejunostomy feeding tube inserted into my intestine at the same time so I could get a nutritional supplements pumped into me. Your husband will need to sleep propped up to stop acid reflux, have a look on the Opa website and you will find out how to get a discount from Putnam's for a wedge pillow. ( There are others available on the internet) I also use pillows on top of the wedge and for about at least a year could only sleep on my back. The scars and ribs on my right side which gives them access to the oesophagus to perform a  major part of the surgery takes time to heal, and I can't sleep on my left side as the acid would just flow straight from the stomach into the gullet. Soft foods are the order of the day, I had porridge oats or cereal with warm milk and Stevia sweetener for breakfast most mornings. Poached eggs without toast maybe bread and butter to dip for lunch. Minced beef was able to make various meals, but it's important to eat small amounts often. Three meals a day go out the window, you have to eat by the clock until you gradually get an appetite back. I also liked coffee made with warm full fat milk fortified with powdered milk. I learned to avoid sugary foods and drinks as they caused food dumping syndrome. If I think of anything else I'll let you know, feel free to ask anything. Kind regards Frank.

Thanks for this info Frank. Had a difficult couple of weeks since hubby came home, we now have dumping syndrome and are trying to work out the best things he can have to eat that avoid that but he has little appetite and it’s hard to get him to eat much at all. 
He also developed gout the last couple of days in hospital and it’s been a battle to get treatment for that as hospital did nothing and we had to sort with GP when he got home. Plus had no follow up from any medics so feel pretty abandoned but finally spoke to a nutritionist today so hopefully we can make some progress. His weight loss has been alarming. No one answers their phones, found it all very frustrating. 
Hope things are going ok for you.

Coco have a look through the chat post named eating. I just commented on it as there may be some great advice in there from the main man Frank which may help you

Thanks Vinny, will have a look.

Hi Coco, my husbands surgery was 13th Jan he got home after 3wks with a chest drain still in place due to a leak (we had no at home care) but he deteriorated quickly & had to go back in. He was in another week getting plenty of fluids & came home again with chest drain which was finally taken out on Monday past. He has his feeding tube but is sampling different foods to see what he can tolerate. It’s a learning curve, some leave him in agony whilst some are easier. I wouldn’t say it’s the healthiest diet just now but he’s getting all he needs from his feed. It’s trying to get his to let me flush him as I see him sipping fluids but it’s not nearly enough. If you would feel more comfortable with a DN then don’t be afraid to request one. Also do you have a Maggies centre near you? Or Macmillan? Then can help get assistance with stair aids or a temporary comode for keeping downstairs? Does you husband have a feeding tube? If he’s loosing weight I would suggest asking for one, you can get temporary NG feeding tubes & it’s a lot less worry for you knowing he’s getting enough nutrients every day. If you have the number for your specialist nurse this is something she could arrange. We had to get a NG for my husband before his first round of chemo as he was very frail. He now has a  jejunostomy feeding tube. Xxx

Thanks Betty. My husband is without any tubes or drains, they took them all out in hospital before he came out. His mobility is ok and he can use bathroom normally. We finally see the surgeon tomorrow so hopefully get some answers then. There are  are so many factors when it comes to eating, he’s better than he was a couple of weeks ago but only just and still losing weight so think he may end up with a feeding tube. 
Hooe your husband is making good progress