Surviving Oesophageal Cancer

Hi Jane & Nick,

So sorry to see your news. I have just posted on this site recently but have been reading posts for support for a while. Like you say you sail along fine and then something comes along and kicks you in the teeth. My husband too now has cancer spread to bones and lungs and some days it all does get a bit much. Some days (and I am sure you feel the same) I feel like I could stand outside and scream for about 5 minutes although not sure my neighbours would like it! Take care and you are in our thoughts. Keep strong and take as long off your work as you need - they will understand and it is important you look after yourself too. I have just stopped working too to care for my husband and also to get a break. I am still working from home so that I have another focus but it takes the pressure off.

Hi Happy Horse

Glad your hubby is home and doing okay. It takes time (up to a year to recover) but he will get there. My husband was really funny with food at first. When he first came home he ate sliced cheese and a couple of biscuits a day! He can now polish off a packet on a good day! I just kept lots of snacking throughout the day with lots of yummy things that he fancied whether it be nice yoghurts or fruit cocktail or whatever took his fancy. Take care.

G x

Thanks Mermaid!

My husband finished one bottle of ensure yesterday! And had half a small pot of rice pudding. That is the most he has eaten in 3 days. he was doing really well yesterday, the best he has been but then got a severe pain in his right shoulder? apparently this might be nerve damage from the op site? The nurse said it should settle but if not they can give him something to help. He was sick once after he had taken some paracetamol tablets which he hates. Hoping to get a liquid form from the doctors today.

T x

Hi Happyhorse

I am 13 months post op and still have similar problems, although my eating has now improved, it got to the point where I thought I would never be able to eat properly again. A friend of mine who has had the same operation has a fantastic apetite and he had his op in October. I had extreme right shoulder pain for at least 3 months after the op for the same positional reasons stated by Crystel. My friend and I have pain around the back scar, however I have found that swimming has had very good effect upon this problem, maybe this would be worth a try in time to come. I got some slow pain relesae pills from the doctor to take at night which helped, I did not think paracetamol was effective at all, there is much better pain releif to be had.

Happyhorse, My hubby too found swimming eased pain in the shoulder and back, he started this 6 weeks after operation - his wounds were fully healed though at that time, I noticed somewhere on this site that they give patients physiotherapy in New Zealand after the ivor lewis operation, that propably has similar effects to the swimming but for some reason (money?) they dont do it in the UK.

Nick and Jane, so sorry for your bad news, try and stay as positive as you can.

Karen

It’s two years today since I had surgery, so a small milestone that hopefully will lead to others. This time last year we were in Rome, not by way of celebration, but because we were on holiday, and as I was standing in St Peter’s Square admiring the Vatican, I suddenly realised the significance of the date that popped up on the camera. This year I’m here writing messages to people, so still an excellent way to mark this day. How do I feel? Great, and lucky to have met so many good people on the forums who genuinely care, offer support and share. I don’t post here as often as I would like, but I do read the threads and can see how all this goodness generates more good and provides a lifeline to many.
To All, I wish you a happy day.
Crystal xx

Crystal

I think you are an inspiration to us all - you have given me a lot of help already and I have not been on here for long. Just out of interest - your holiday to Rome - how did you go on with travel insurance and practical issues?? Did you have to make any special arrangements??

Tracey

Thanks for your kind words Tracey. We thought the best way to travel in this instance was by coach as it meant I could sleep when I needed to and avoid the hassle of the airports and baggage claims etc. It turned out to be a wise choice as we were transported everywhere and didn’t have to worry about a thing. The only special requests I made were at the various hotels where I asked for extra pillows and much less food Lol. There was only one dangerous moment when I was busy standing up on the coach looking out of the back window at the view when the coach had a run-in with a motorbike. I was thrown onto the floor and landed on the scar on my back. The motorcyclist was unhurt and I was bruised. It was my own fault because we all know to wear seatbelts on moving vehicles. Our insurance is an arrangement that we’ve always had through the bank and covers illnesses such as cancer. I believe there are several threads here about travel insurance. If you click on the green tags label to the left of this page and type in insurance, that will show the topics.
Crystal xx

Hi CrystalClear

Congratulations on your 2 years!!! What a big milestone and looking back you will have achieved a lot in that time and thank you for your kind words. We have had a rubbish day today where I have felt a bit overwhelmed caring for hubby. He has been home 6 days and I thought I was doing okay but just tired but I nearly walked out a shop without paying today which really upset me as I am usually on the ball. I will probably laugh about it tomorrow! There are things that are hard such as emptying commodes, etc which you don't think you will ever have to do for your other half but you just have to get on with it I suppose. Take care and enjoy your anniversary!

Hi Happyhorse

Glad to hear your hubby is eating a bit better. My hubby got various aches and pains after surgery and was always freezing cold for a few months. He would have loads of layers on, covers over him and the fire raging and the heating on too!!! It was like a hothouse. Your husband may also get referred pain (I think they call it that) where the pain is in a different area to the wound site but it is all to do with nerves. My husband has several tumours in vertebrae in his spine but rarely gets back pain but mostly gets shooting pain down his legs.

Hope you got on better with painkillers and I agree with the other poster that there are much better ones out there that will be better for him. Even Cuprofen which is taken 8 hourly and is just one tablet would maybe be better? The only problem if he gets a liquid one will be finding space for the liquid although my husband did take the paracetamol you dissolve in water so you could try them as you can get them at any chemist.

G x

Hi Crystal

Well done on getting to 2 years we hope you have many more. Unfortunately Nick will not be joining you in that milestone. They have discovered secondaries in spine, pelvis and liver and the prognosis is not good so we are taking it one day at a time. Nick worries about what will happen when it is so bad that he cannot walk ... if I'm honest so do I but I tell him that he can get road rage in one of those motorised wheelchairs. Well must go and get him sorted with the morphine.

Jane & Nick xx