I found your site via MacMillan. I have spent a while looking through posts. Before 6 weeks ago I'd never heard of cancer of the oesophagus, and when I was given the diagnoses of adenocarcinoma on 7th Nov and following Endoscopy, biopsies, CT scan EUS I have been given staging of T3N2 on 21st Nov. I have had a PET Scan and hope to get results tomorrow I've had discussions with surgeon and oncology and plan is chemo to reduce the tumour and then surgery. I am anxious but am trying and mainly being very positive ( although have some wobbles!) I am going through the myriad of feelings of shock / denial / thinking they must have made a mistake to thinking my back pain and head ache means it's spreading! The waiting seems to be unbearable and I am a little shocked still thinking I am actually possibly going to get "ill" before I get better. I am finding that scenario hard to get my head round. I am not fit as in athletic but I am always on the go and active. I am overweight, ( I'm 5ft & 11st) I've never smoked and not much of a drinker - I like Baileys and fruity cider and Pimms in the summer. But drink of choice is a cup of tea! I love berries and veg and probably eat too much steak, but eat fish and chicken and we have (other than bacon and good sausages) eat little processed or junk food. I'm 48 and wouldn't have put myself in the at risk category, except a couple of years ago I had spell of acid reflux which eased off following a months worth of PPI but over the last few years I have regularly thrown Rennies into the shopping basket! Since all this started ( early Oct ) I've had dreadful back ache and in last few weeks pounding headaches. If I keep busy I distract myself but resting at night is the worst
So that's me - I am determined to get through this and give support to others and take advice from those who have been there.
Michelle
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cheliZajaz
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Hi Michelle, I'm glad you've found this site, it really does help to talk to others who've had the same problems.
The waiting for results is horrible, and it goes on and on, But it's tomorrow already (if you see what I mean) so you'll get another result today. Good luck.
All you can do is let the time pass, and go with the flow. The hospital is really well organised, they've done it all before many times, and things happen really fast.
As for getting ill before you get better, I'm afraid that is how it works. It's a big operation, and it takes months to recover, but it's do-able, we've done it!
But why am I telling you all this, you've read all our posts, and you know all about it. I just wanted to say hello and if you've got any questions, anything at all, just ask.
When I was in your position, nearly seven years ago, I really wanted someone to hold my hand, so I'm sending you an E hand holding, and E hugs. (Sorry if that sounds silly)
No that that isn't silly. It's lovely. Because to be honest as much as I don't want to think about it, what goes through your mind ( as much as you try to stop it) is lots of what ifs and what happens afterwards, and it's comforting to know lots of people have got trough it. - thank you lots x
Hi Michelle, it normally comes as a massive shock when diagnosis is made, I was pretty much the opposite having been diagnosed with Barratts more than 20 years ago but even so when you are told that you have this it is still hard to come to terms with. I wish I had the support of this site when I underwent my surgery almost 7 years ago now but I did copious research on the Internet even watching the operation conducted in some eastern European country on line. I had ivor Lewis 7 years ago and was adamant that even though I was told I would be off work for u to 12 months that I would return to work much sooner. In fact I was in hospital for 10 days and went back to work one day a week after 3 months. It is a long journey and each of us takes a slightly different route but be assured many have trodden the route before and advice or experience is only a question away. Personally I would say gather as much info as possible and prepare as much as you can by talking to others if you feel you want a chat just say the word good luck today and remember yesterday is history and tomorrow has not yet happened so live for today. Best regards ray
Thank you. That's helpful to know. I seem to have tried in a short space of time read lots and see lots. I am by nature someone who tries to research everything (even seeing the scary stuff ). But for me it helps me prepare more, I have a busy working day today and so that will help me not dwell to much waiting for this afternoons phone call. Not 100% sure what they'll be telling me. I just want to start treatment so I can resume getting on with life! Thank you again x
The most worrying time of all at the moment, going into the unknown, but travel with hope, one step at a time. My journey started 23yrs ago something that at the time just seemed like a dream. Plenty of help out there . Best wishes on your journey sally
I have just been diagnosed with Barrett's and hiatus hernia. I am scared and fear the unknown - I am waiting for biopsy results. It has been three weeks since my endoscopy and I keep thinking if it was anything serious they would have let me know by now. I really feel for you but at least you are in good hands now and it is being treated xxx
Like you i was diagnosed last year with the same cancer. I am 55 now, 54 when diagnosed had lost 3 stone by choice before diagnosed. I started my journey,chemo Dec 2nd last year, had quite a few side affects but managed to put on weight. Lost my hair by 2nd dose of chemo. I was able to get a lovely wig in keeping with my own colour style from hospital wig service. Op March this year which is a big op but as long as you do everything you are told will get through this. The chemo after is harder, because your body is recovering , however ,it is moping up any signs of the cancer. Don't worry about your weight you lose after. I lost 3 stone am 5ft 4.
You have to adapt to your eating patterns and work. I am looking at going back in Jan slowly. Feeling more like my old self although body tells me when i'm doing too much. Get very tired and apart from walking, not started any exercise classes yet. Trying to get help with finding appropriate classes.
My advice to you is break the treatment down into bite size bits, concentrate on what you are going through now and not ahead. I wrote a diary of how i was feeling each day during my chemo to compare each dose. So you know what to expect on certain days.
You will get lots of information from your CNS nurse and hospital . Also look for the site OPA for the type of cancer we have. There is information and meetings if you want to go to.
Husband and friends , Family are a godsend. This site is great for finding out information. You are not alone.
Hi Michelle We all know how you are feeling right now ,total shock !! I was given the news 8 years ago in October,like you didn't even know what oesophageal cancer was.But after treatment and the operation ,here I am to tell the tale It's a bumpy ride to start,but gets a lot easier and life is so good in the end Lots of help out there from so many.Best advice i was given by my district nurse was,baby steps to start and they get bigger Good Luck all routing for you
I was in the same position as you exactly 10years ago. Never heard of oesophagal cancer!! I to didn't smoke or drink so it came as a big shock. The answer is to think positive and keep busy. I have a very supportive family and had loads of friends around for "coffee and cake" and hospital appointments were treated as 'days out' I had to travel 40miles to see my surgeon!! Since my op I've seen 4 grandchildren born, travelled to Spain, France, Madeira, Egypt and have just returned from India only last week. There is light at the end of the tunnel so keep smiling and most of all stay positive.
First a big hug - I know you'll need it - it's all such a shock. I am 53 and was diagnosed (T3N1) in Jan and had chemo then chemo with radiation then the surgery (I have squamous cell not adenocarcinoma). I was also considered fit and healthy - don't smoke, ate healthily, exercised regularly, slim and not much of a drinker either but like you - loved loved my tea.
I also had a lot of back pain (it's only getting better now) as a combination of the tumour and the tension and worry. Physio has made a huge difference. I barely slept during my treatment and struggled badly with severe neuropathy during my chemo and the chemo combined with radiation was even worse but I got through it and actually once you start to recover you get better quite quickly. I think keeping a diary is an excellent idea - I did face book posts as a kind of online diary and helped keep many friends all over the world up to date. It meant I had endless messages of support and a virtually non-stop supply of flowers, dressing gowns, and lotions and potions as gifts arriving. This really uplifted me and I was stunned at how wonderful and supportive everyone was. Also I had visitors as much as I could tolerate - the company really helped.
The best tip I can give you with the chemo is to try and exercise every day (a walk is fine) if you can. I used the cold cap for my head and hardly lost any hair. It hurts for about 10 mins then you get used to it and it was worth it - I never looked like I had cancer. Somehow you get through it. Also I bought 'lounge' clothes so I could be comfortable but still look decent. There are online sites that sell special creams (eg. defiant beauty) for cancer patients. I had chemo rashes (saw a dermatologist and she was amazing) and my skin was very sensitised so this really helped. Finally, the little I could eat during chemo I made sure was high in nutrition as it is the only thing your immune system has to fight the cancer.
I won't lie the surgery is the toughest thing I've ever experienced and I have ongoing issues but I have very little pain (just under 3 months) and I am able to go for a walk and even do the occasional exercise video (mild of course!). Most of my complications are to do with the fact I have a neck join which won't affect you as you have a tumour much lower down. I have a lot of down days but things are slowly getting better as I try to come to terms with the new me. But remember, everyone is different and some seem to have very little issues. The level of exhaustion is a shock but slowly gets better.
I hope it all goes well for you and don't hesitate to contact me if you wan't any info (I read and researched everything about OC including medical papers during the nights I couldn't sleep) as I had no access to a support group. I did go to one meeting quite far away and found everyone to be totally disinterested in engaging and to be fairly old too - just couldn't relate to them. I quickly discovered I knew a lot more about my situation and I was looking for both information and emotional support from someone who had gone through it but there was no such person but I managed to get through it anyway! You will amaze yourself at your strength - that human spirit that burns in all of us.
So sorry that you are joining our club, definitely one we would like to bar you from, but life has a way of throwing us a curve ball, and well we just gave to run with it. You sound positive and that's important. You do gave a rough journey ahead, but as you will see see from all the wonderful people on this site that have travelled the road ahead of you there is a light at the end of the tunnel and you will get there. I am 6 years post op and doing well. Like you l didn't smoke, drank little, was a vegetarian and fit and healthy, so know this cancer can happen to anyone.
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