Hi Milly 

So pleased your road trip was good - you give us all encouragement and I really thank you and everyone on here for that. 

I am still losing weight but feel it is plateauing now - I see my consultant, chemo nurse, dietitian, physio - and anyone else who wants to join - for a meeting on 9th   Last CT scan showed no visible cancer - yayyyy!!  Breathing still a bit difficult but can live with that. Getting my social life back at last. Just enjoying 'life'!!

Ian - keep keeping the faith - the NHS are miracle workers - it's a long and emotional journey - but there is always light 

Andi xx

Hi Andi,
 

Yes it was truly amazing to.do it, 2000 miles and four countries. We went up Aqilla du Midi in Chamonix  and saw climbers on Mont Blanc. 
This time last year I had broken my ankle, had an urgent appointment  for a suspicious mole and Kev was having his Picc line put in in prep for his post op chemo. Such a stressful time. My sister had to wheel me in for my hospital appointment but thankfully the mole  was fine.

I'm pleased to hear that you have a lot of input from health professionals to help with your recovery and absolutely delighted to hear that your last scan was ' visibly clear'. 
You have made huge progress after a very difficult post operative stay. In hospital. 

keeping the faith for everyone 

Milly

Hi

My dad had the operation last Wednesday and is due out tomorrow. I've bought some custard, ice cream and making some soups. He has been told get out and walk each day. Just wondering if anyone has some top tips. Like whats good to eat / avoid. He's also coming home with a feeding tube, a nurse has been to explain how this works and he has been shown how to use it, but does anyone have any do/donts that you don't learn from hospital? Any other wisdom from those that have been through this . 
 

Been reading through the conversation and although he's recovering well at the minute it sounds like it can be a very bumpy ride 
 

Many Thanks in advance. 
Sarah 

Hi Sarah,

My husband was in hospital for 5 weeks and as you may have read had several complications not from the actual operation but from a drain  being removed which resulted in internal bleeding and other complications then ensued. Consequently by the time he came home his diet was not as restricted and although the feeding Jeg tube was still in place it wasn't used. Everyone on here seems to have had different experiences but I know there are those who still had the feed put through the tube and came home in around 7 - 10 days who may help more with suggestions of food. High calorie is crucial I would say. I still put semi skimmed milk powder into full fat milk. Trifle and cream cakes, ice cream and anything he fancies is the main idea. He should have access to a dietitian who will give you a information sheet. Little and often is key but eventually he should be able to have a bit more each meal. I am amazed at what my husband can eat now. He had half his oesophagus removed and a third of his stomach. Others on here have had all their stomach removed. It's trial and error but soft foods are what they advise to start with but they do want you to get to a more 'normal' diet as soon as you are able to do so. 

Regarding walking every day again it's very individual. This operation is as big as they get so be led by your dad.,walking around the garden (if he has access to one) may be enough and certainly just getting home is huge. Normal daily routines can be exhausting so take it steady, small steps I think is crucial. I don't know your dads age or fitness pre op  so again it's very difficult to say. My husband has been part of an active recovery group since being diagnosed through the NHS which as been a real help. 

The good thing is even sitting outside will help your dad's recovery both mentally and physically. Your love and support will Play a huge role too. Look after yourself as well and access any help you can do including if necessary mental health as I know it's a very difficult diagnosis and operation to comprehend.

keeping the faith as always 

Milly

Hi milly

Not been on for a while but update on my son. Had 2 rounds of flot and latest scans showed metabolic remission apart from some sign on his lungs which they thought was inflammation.  Obviously best news we could have hoped for. However had a cough for a few weeks and breathing  ot good so a&e via ambulance whilst on holiday turned out to be pleural effusion, drained 1.5 litres but brown in colour and it has been sent off to see whether any cancer present or infection but worried sick. Finally getting to my question sorry, has anyone on here experienced pleural effusion and what could it mean. Sorry for rambling on

Hi meltra44

Regarding pleural effusion yes my husband had a large pleural effusion which they tried to drain several times. His was infected from pneumonia and developed into pleural enpyema. His fluid was continually checked for cancer cells. It's hard to comment or offer advice as each case is individual. The cancer team and upper GI team should support you through this difficult period until your son gets the results. Have they put him on antibiotics as a precaution? 

keeping the faith for your son and everyone 

Milly

Hi Milly

Yes he had an intravenous dose of antibiotics and they sent him home with some. I know it's hard to comment as everyone is different, just looking for some reassurance I suppose. Thank you for your advice just nice to discuss it instead of it going round and round in my head

Tracey x

Hi Tracy,

Yes I know that feeling and my default  setting was often the worst case scenario. However if it helps my husband recovered - he needed an operation to free his left lung. The old adage of one step at a time is true but easier said than done sometimes especially when waiting for results. It's 'limbo land'. Posting on here certainly helped me through some extremely difficult times. 
 

still keeping the faith

Milly

Hi Milly,

Yes I keep jumping ahead instead of waiting for results and googling which I know you shouldn't. I'm going to try and take a step back and be there for my son when he needs me to be and try not to interfere, well not too much lol

Tracey x