operation in April

It's a massive change for all involved and very impactful on partners. Be thankful that an operation was possible to keep your man with you. After a few months things will be better and you'll settle into a new normal. 

GeoFerret 

i could not agree more with your reply , I've got to have chemo ready for the operation in June July its very stress full  for al involved 

Good luck with your op. Keep positive and keep posting please. I haven't had a meeting yet about my biopsy and CT results. The waiting is a bit scary. My endoscopist told me I had a 3cm  oesophageal cancer. So suppose I just have to wait. How long did you have to wait for please?

GeoFerett

about 3 weeks before Biopsy results got a phone call on the Thursday see see team who confirmed everything 

then ct scan  fitness test pet scan then camera in belly button to see if in anything  was  hiding but all good   

now waiting chemo chat on 21 April 

Thank you so much. It's ok reading books and checking with Dr Google but getting feedback from someone who has done it is priceless.

Best of regards going forward. A hard journey but better than the alternative.

I have just finished my post op chemo.  I was first told it was cancer last May and I was in hospital a month as I did have complications with the surgery, but if it saves my life it was worth it.  

My husband has worked throughout, luckily his work have been understanding allowing him to attend important appointments with me and visiting in hospital and making the time up on other days.  I have gone to blood tests etc. on my own. 

it is hard and takes a lot of getting used to with the change to eating, dumping etc. but like most things it gets easier with time.  We now have air fresheners that I never used before! 

I hope the surgery goes well.

How long before you hear if you're all clear. Thanks for posting.

Hi GeoFerret 

I was told in my first follow up with the surgeon after leaving hospital that they got the whole tumour, mine was stage 3, and found cancer in 2 lymph nodes which were removed along with 46 others.  So at that stage I was clear, however it was not until I had my last round of post op chemo that the oncologist used the word cured.  It was great to hear although I know how important the follow ups are going to be.

Hi JacPop, thanks for your follow up post. I know it's been hard but what a good news story. I'm so pleased for you. 

46 lymph nodes sounds a bit outrageous?

Thanks for sharing your story and good luck going forward.

Dear Onos,

This is a very hard journey for the person with the diagnosis and all those who love them. Getting support in practical ways is very important. I organised extra help around house cleaning, we bought easy meals so we didn't have to do loads of cooking, etc. 

You're still at tte beginning of the journey and there are so many unknowns. Soon enough it will become second nature though. All the appointments will settle into a pattern.

My treatment plan was 4 rounds of FLOT chemotherapy,  6 weeks rest, surgery in January, 7 weeks rest, and now 4 rounds of FLOT.  The staging takes lots of time/energy/angst. I think I spent 4 weeks mostly sedated or recovering from all the tests. Now during 'chemo week ' I go in for bloods on Tuesday, spend Thursday all day getting chemo during which time I see the dieticians,  oncologist, etc. So that's efficient  and compressed. And Friday afternoon I've opted to drive into get the pump disconnected rather than have to wait for the district nurse. I like that being under my control. I also manage a a couple hours of work on the Friday. The following week I don't usually have much contact with professionals other than the odd call. In the beginning the supportive meds felt like a lot. Now they're just routine. Being ill felt like a full time job but now I'm starting to think of and do other things.  I have weeks left until chemo is complete.  All I'm saying is hang in there. It won't be hard forever. Treatment will end.  Yes there will monitoring but that will be every few months rather than this constant stream of appointments. 

Before surgery I was lucky enough to be part of the pre-hab programme at Royal Surrey Hospital.  Getting fitness up as much as is possible for surgery is key. I also did (and still do) nice things at the Fountain Centre - massages, etc. at the Fountain Centre which is on the hospital site. There's another charity I've found helpful - called Look better, Feel better. There are various supportive charities throughout the country.

I was fortunate enough to not need a feeding tube before surgery. They put one in during the surgery. It was/is needed, especially just after surgery and now during chemo. After surgery you start off with drinking clear fluids so you really need the feeding tube to live. This progresses to pureed foods, etc. Now during chemo my appetite is low. I have the J- tube in my abdomen. The nurses have been great supporting me with it. Setting the machine every night is also now just routine as is cleaning the area. I suggest buying sterile wound wipes that are alcohol free. My feeding tube will be removed after chemo and I'm okay with that as I was starting to get used the new way of eating just before chemo.

It might be worth getting financial advice from MacMillan. 

Sorry very long post but I hope it's useful.

Take care 

Suzy