I’ve recently been diagnosed with Stage 2 adenocarcinoma and about to undergo 8 weeks of chemo then surgery. It’s all been explained to me and someone on this site likened the surgery to being as major as heart surgery.
What I’m struggling with right now is a sense of complete detachment, like I feel this is not happening to me but then other times I’m a weeping mess.
Unfortunately I can’t even see my family because of COVID restrictions so I’m feeling a bit lost 😞
Hi I know exactly how your feeling it's a very lonely place even though you have people around you you feel so alone. The shock you feel on diagnosis is awful . I found once the treatment started it was a bit easier I found all the thinking about it really difficult. Unfortunately there's not a lot you can do about it more so at the moment because of covid nothings open where you can go to be distracted for a little while. I know it's a very frightening time but you will get through it and surprisingly the time does pass quickly it's nearly two years since I had my op and it's gone by really quick. Sending you lots of hugs 🤗🤗🤗
Thanks for your reply Molly. I can’t wait to say I’m 2 years post op . Are you managing ok with your diet and eating ?
Yes you soon learn what you can eat and how much it's hard at first cos you don't have much appetite and it takes a while for your digestive system to get better. I now eat small amounts throughout the day it takes a while to get used to it but you will . Hope you're feeling a bit better I found it used to come over me in waves and I know it's horrible x
Hi Deeedals, I know how scared you are feeling as I was diagnosed eight and a half years ago. I still remember how it consumed me. My wife and I even went to London for an overnight stay before my operation but it just meant it was constantly on my mind in London instead of at home. It is major surgery and I won’t pretend you have an easy road ahead but it does get easier. We here the term “new normal “ a lot lately but in terms of eating, that’s what it will be, eating little and often. Now it just feels normal. I used to be a big eater and would eat a big meal but now I eat small portions I look at other people’s plates piled high and it makes me feel quite ill.
Good luck and best wishes, James.
Hi Deeedals - sorry you’re having to go through this and I can imagine how worried you are and how lonely you feel - it’s a long journey that needs to be taken a day at a time - I feel so sorry for people with all this COVID and how much harder it makes things - eating does change after surgery and it’s a learning curve - this forum has good support - wishing you all the best for your journey x
My surgeon and oncologist have told me that this surgery is the biggest surgery that is done. Bigger than heart or anything else.
What you are feeling sounds exactly how I felt two years ago when I was diagnosed.
I had many complications so it has been a very hard road but the good news is that it has all been worth it.
You will have lots of days that are really hard but keep going, keep going and keep going.
Wishing you all
The best. The people on this site are amazing and have lots of knowledge to help you along the way.
Oh bless you ! I was exactly like you, it wasn’t me they were talking to how could it be?
I had my op 8 yrs ago, doesn’t seem that long though. It’s not an easy journey but you will have support through it all, use all opportunities your given, I have had to have 2 lots of counselling since, they said it’s a form of grieving for what you’ve lost,, sounds strange but I guess in a way it is.
I still over eat, not very nice, but you sort of forget, I look at meals sometimes and wish I could eat that much lol. I remember thinking I would never be able to eat a pasty again and I got so upset , but the thing is I never ate them anyway !
Your emotions will be all over the place, but let yourself experience them, it’s a healing process.
The operation is major, a thing I never got to grips with really, was always being told off for not recognising it. The feelings your going through are all normal and I am sure we have all experienced them. You will look back on this in time and see how far you’ve come , I recommend keeping a diary , from now, it really does help, I am a Christian so I keep a prayer journal, I document all my feelings in it, when I feel particularly low I look back and see how far I have come. It really does help. Stay strong, you’ve got this, we’re all here for you and I am sure we will all be praying for you.
June x
Hi Deedals There is no doubt you are at the beginning of a journey and this is the hardest part mentally but as Molly says it does get easier once treatment starts. I can imagine it is hard for your family too when they can't be with you to help. Would it help if you could talk to someone or contact them personally through email. I would be happy to give you my details or you could contact an organisation like Macmillan or OPA who are very supportive in lots of ways. I am 12 years post op and still remember those early days before treatment began.
Hi there. Yes it’s scary at first but once you start chemo and everything else. You have more to think about. And just think about a your future. It’s the biggest elective surgery you can have. And it’s a hard road to travel. I had mine nearly 9 years ago. Thank god. You get used to your new normal. It’s hard without family around. Perhaps FaceTime. And alway have support here
Let me add my response to all the others. First, seek out someone who has gone through it. We are all more than willing to help and answer your questions. We've been there, done that. Second, listen to your doctors - don't consult Dr. Google. You'll only make yourself crazy. Third, be patient!!! Patience in all things is necessary to get through the protocols. Fourth, take all the pain medications you need. Don't think that you'll become addicted or anything like that. TAKE the pain meds all you want or need. Fifth, wake up every day and say to yourself "what should I be doing to make my chances of survival better?" And then go do that. That's all you can do.
I am 1.5 years out from surgery. Life is different, but you adapt.
Hope this helps.
Adding to comments from others, I think we are fortunate in the health service & care we have, but also lots of people like those on this site to offer support. Daunting though everything will be at this stage have belief that you will come through this. There may be some tough times during treatment, but also much better times to come. I also had stage II adenocarcinoma with chemo & surgery just over 2-years ago. Although it may be a big op, try not to worry about it as we have fantastic skilled & caring people in the NHS who will look after you well. I found that starting on treatment helped as I could look at milestone towards recovery, albeit small steps, & although it may feel a long way ahead I fond it helped. I also kept a diary in which I wrote my thoughts & found that kept some sort of perspective on progress. Wishing you the very best for the road ahead .
😘
Thank you so much for your reply and to all the others who have responded. It’s funny, I’ve never kept a diary before but I did start on the day of diagnosis and it does help. It’s good to hear you’re 2 years on and I take on board your comments.I am going to treat each step as a milestone. Thank you again
It is a difficult time we are going through, but take heart from the fact there are quite a few on this site who have gone through and had the same feeling your have. For me at 58 being told I had cancer a week before Christmas was a very hard thing to get to grips with. With the help of my wife and 2 sons we accepted it.....now on the 14th Feb I will be 9 years post op. There will be ups and downs but keep in contact with your surgeon and clinical nurse who should give you support. As said before, you will get to know what you can eat and how much, keep a diary, it will take time for you to adjust to a new way of life. Take each day as it comes and day by day. Best wishes our thoughts are with you.
Hi there, I am nearly 5 years from op. Yes it is like having heart surgery I was told.
I would break it down 1st the chemo and getting through that. Write your diary keeping track of how you feel, meds and times you have to have them. Make sure you have a thermometer to take your temperature. You will probably see a pattern of your good days and bad days.
Hand cream lip balm are good to have. Reading material colouring books and iPad to get you through your treatments.
I was told not to eat my favourite foods when on chemo as it can put you off them. It did for a while but i can eat them now.
Try keeping as fit as you can before and try build up your weight.
Don’t be afraid to ask questions on here. Any medical problems phone your CNS if concerned.
Best of Luck
Debbie
Thank you, that’s great advice x
Yes the very best you can make your fitness levels and well being will DEFINATELY Help
Walk as much as you can and log your steps to try improve daily by
This will help your lungs tremendously as will the little blow machine you will be given for home pre op
Enjoy all your favourite things to eat and drink as your taste buds will maybe be wonky for a while too
Hi Kiddy, it’s so true regarding food during chemo.
My husband suddenly couldn’t stand eating scrambled eggs during chemo and this remained until today (7 months post IL op).
I agree with all that has been said. It is apparently, the biggest op you can have. It is life changing but you adapt by taking one day at a time. I am 3 .5 yes post op now. This site is helpful, so is oesophogeal patients association. It is especially hard at the moment but try to speak to others when you can and use all sorts of media for distraction. Also like others have said, build yourself up as you will loose weight after
Forgot last night but now recall. One thing that helped me from spring 2017 at diagnosis through chemoradiothrapy and surgery, was keeping a record of the good things that happened that year. I kept photos in a cheap pocket book album but it could be written notes or audio or "souveniers" Harder in current circumstances I know, but looking for good things helped me stay positive. After surgery, a friend gave me a very pretty notebook "to record my progress". I did and it helped to look back at it on the not so good days. Hope all gos well for you
Hi Deedals, so sorry that this experience has to occur and your fear and shock of the pending surgery and outcome is reasonable.
However, the positive side is the surgery is your hope for a curable solution.
My husband had IL surgery 7 months ago and his journey at the onset seemed so slow. However, he is recovering well and learnt to adapt to the ‘new norm’. My husband weighed 89kg (5’ 11” height) and now he weighs 70kgs.
It is best that you use the time before therapies and surgery to stay healthy, exercise to maintain your muscle strength and if you are not currently over weight, it is ok to try to put on some weight now before the surgery.
Will be supporting you in my prayers, be brave and stay strong....better days are in the horizon! 🙏🏼🙏🏼🙏🏼
Thank you so much for your reply and kind words of encouragement x
Please contact OPA Cancer Charity as below and seek for Patient Buddy in confidence.
"One to One Support
We also offer patients the opportunity to be able to speak directly to a former patient and gain reassurance that life can again be very good.
From personal experience, we know that the first few weeks and months before and after treatment can be challenging.
Most patients find it helpful and encouraging to talk to someone who has experienced similar symptoms and has undergone the same course(s) of treatment. Our volunteers (all of whom are current or former patients themselves) are on hand and willing to offer you support, encouragement and reassurance.
Whilst The OPA does not offer counselling or medical advice, we offer general guidance and suggestions based on our own experiences. From questions to ask your GP, to tips on what to eat... plus a lot more.
We will be happy to put you in touch with someone local to talk to, or alternatively, you can contact our Awareness or Cancer Support Helpline on:- 0121 704 9860 or by email: awareness@opa.org.uk
or
enquiries@opa.org.uk "
Also if nearby please contact CLAN, Maggie's or MAcmilan charities for free counselling services for your emotional needs.
Yes I can totally understand how you feel frightened
That is actually very brave to say you are frightened !!
I hope you have been made aware that only around 20 per cent of patients are actually able to have surgery so you are a very lucky person
You are now on a new path in your life and I’m sure you will do the best you can to cope with it all
My best wishes not just to you but your family too
Fizzy35
Ps There is a LOT of knowledge and support on this site and also Carer Buddies available by phone / text or Email in your area.
Have you copies of all the booklets etc available free from the OPA ? Many ideas in them to help
Thanks for your input, since my first post I am just about to have my last cycle of chemo and the surgery is that much nearer. I have however, with help from people like you, my specialist nurse and my phone buddy Geoff come to terms with my fears and I’m ready for the next stage of my fight. Bring it on !
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