Hi All

Bacardi - what an awful time you are all having, my thoughts, best wishes and prayers are with you for the next few weeks.  As you already know everyone is different, but my dad had his operation in August 2009 - it is a huge operation it is apparently a bigger op than a triple heart by pass. He was in ICU for 10 days and was getting better one day and then had a relapse and was back on oxygen the day after,  it was very hard for my mum, sisters and I to see our big strong protective dad in such a poorly condition, he too had a chest infection, fortunately he remembers very little about his hospital stay now.  We all react differently in these awful situations and Steve is spot on when he says there is no right or wrong wat to react.  Just go with your gut feelings, and take one day at a time,  I sincerley hope things improve very soon and you can then see light at the end of the tunnel, keep posting  and getting support and advice from everyone on here who has been through the operation ... it  was a huge comfort and support for me.  When I think now about that first month after dads operation it still makes me cry now ! and thats over one year later, just makes you realise how fragile our lives are......please try and stay positive

Janet x

Bacardiwoman, Watching and waiting is stressful in the extreme and the feeling of being helpless creates that anxiety.  Many of us here know how you’re feeling so can empathise with you as you wait. It wasn’t a helpful comment from the nurse about becoming immune to sedation, as I’m sure that your husband can’t feel excessive pain whilst under deep sedation and on ventilation, so you should put that out of your mind.  The situation can change hour by hour and it’s my sincere hope that he will become more stable.  Talk as much as you can to his doctors and I hope you’re finding support from the specialist Upper GI nurse or Mac nurse, as well as those caring for your husband in the IC room.  As both Steve and Jan have said, hold onto hope.

There with you.

Crystal xx

Thinking of you. Sending you lots of positive vibes.

It's REALLY frightening when they start coming round when you're there, I agree and understand what you're going though. I felt like running for the hills and never coming back. It's the hardest thing I've ever had to deal with... (and I've had a few things, My Mum died young (47) after 4 lots of cancer.  I cared for my brother with severe cerebral palsy - I'm not easy to spook, I can handle most things!) This really pushed all my limits!

Don't feel under pressure to be there too much. I did and my husband remembers nothing of me being there. I found the best thing for me was little and often visits, if you live near the hospital. Siting there too much only puts your blood pressure up and doesn't really do anyone any good.

Thinking of you. Feel free to send me a private message anytime.  I can give you my number or email - you can call or email me anytime.

Try and be kind to yourself. BIG BIG BIG HUG. You're doing GREAT. xxxxxxxxxxxxxxxxxxxxxx

Bacardiwoman, I've thought about you all day, as I sat in the hospital with my husband. I am really rooting for you and your husband. It is very tough. Maybe this, from one of Ed's friends, will help. "Cancer is so limited...It cannot cripple love, It cannot shatter hope, It cannot corrode faith, It cannot eat away peace, It cannot destroy confidence, It cannot shut out memories, It cannot silence courage - -" 

Peace to you,

Pilla xx

Hi

Thank you SO much for your comments.  They mean so much to know I have so much support from you all.  Bless you all.

Today has been a much calmer day.  He had another blip in the night when he had another blockage but since then hes stabilised and his oxygen is back down to 50% tonight :-)  The doctor came round after I left but spoke to his son and said hes almost back to where he was and they may try to reduce his sedation tomorrow and see how he reacts!!  Good news but terrifying too being as hes meant to be dependant on the ventilator.  Not sure I want to be around when they do that!  They had turned his sedation up today so he didnt really move or come round.  I feel I need to get over my fear of him waking up now.  Ive had lots of visitors today suddenly and lots of support and feel much calmer again.  Am hoping tomorrow continues to be calm but am learning from experience that you cant take anything for granted

Once again thank you all so much.  Love and very best wishes to you all as you fight your own personal battles xxx

It seems we have something in common, but really nice to know you are doing okay.  I was diagnosed with T3 N1 M0 of the eosophagus on Friday 13th August - I knew it would be a very ulucky day but I'm still laughing.  I had all the usual tests, 14 last month and passed my two fitness tests.

Funnily enough I live in Banstead, Surrey just a five minute bus ride from The Royal Marsden. It's early days for me and on my first course of chemo, with my second starting in 2 weeks time. It was a friend of mine who pointed the way to your story.

All I can say is "well done, good luck and keep smiling."

Hi Bacardiwoman

You can be sure I’ll be thinking of you today as the doctors reduce the sedation.  If you are there with him, or a little later on, be sure to talk to him and reassure and encourage him, telling him he will be ok.  All that sort of reassurance really does help.  It’s good that you have a support network there, as that is important to strengthen your own ability to cope.

Sending you calming vibes and fingers crossed that all is well today.

Love and Hugs

Crystal xx

Hi Jazzjohn

Welcome to the Forum and this particular thread, although I’m sorry for the reason that you’re here.  You’ll find quite a number of patients and carers at various stages of treatment, here and also over in the Gullet (Oesophageal) Group, so I’m sure you’ll get lots of help and support.  If you click on our photos you’ll be able to read our profiles.  Reading yours, it’s unclear what your treatment plan is – have the doctors mentioned the possibility of surgery, or perhaps chemo/radiotherapy?  I see you’ve had the fitness tests, which suggest surgery?  Anyway, if there is anything you need to know, or if you just need to chat, somebody will be around and able to help.

Keep in touch and let us know how you get on.

Crystal

Hi Crystal. Thank's for your response and hope you are okay.  It's early days for me - just 8 days into my first / two courses of chemo lasting 6 weeks. Then hopefully the operation up at "The Marsden in Fulham."

When I moved to Bansted, Surrey,  just 9 years ago I thought to myself . "Well, if ever I go down with cancer at least I have one of the best treatment hospitals virtually on my doorstep."

And here we are, as you surely know it's the kind of thing that happens to other people and will never happen to ones self. It was disovered by mistake after an MRI scan when I injured my foot. When it's all over I am gonna sit down and write that hospital neurologist a letter thanking him for his concern, understanding and making me laugh whenever we meet.

Morning

They turned the sedation etc down yesterday and HOORAH hes breathing on his own!  Still on ventilator and sedated but at least he is breathing again which is a huge relief.  He comes round when hes moved (doesnt like being messed with!!) but I remained calmer yesterday and even stayed whilst they did suction a couple of times on his chest! Very brave!  Have just rung and they intend to leave him on the ventilator today so fingers crossed he remains stable.

Good luck with your treatment John.  Its a long journey but people that have dealt with us at the hospital have all been brilliant and you do feel so grateful to them.

Love and good wishes to everyone reading xx